Ehlers-Danlos Syndrome (EDS). Connective Tissue Issue NOT Autoimmune. Overlaps With Other Things. Dots to Connect.

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Mardy Ross's picture
Mardy Ross
Title: LumiGRATE Poster - Top of the Totem Pole
Joined: Feb 16 2009
Posts: 1933
User offline. Last seen 11 hours 41 min ago.

This is our primary topic at Lumigrate on Ehlers-Danlos Syndrome / EDS, which will also then lead into covering POTS (postural orthostatic tachycardia syndrome (in other words POTS is "when you change position your blood pressure and heart rate go wiggy and cause a lot of symptoms, including a feeling of doom / anxiety syndrome") AND a bunch of other things, as EDS / Ehlers-Danlos Syndrome is yet another one of 'overlapping conditions'.

And I will say that, as I edit this in 2017, on September 21 (the equinos), after 7,330 people had read it in it's original form since it's creation October 31, 2014 --  I believe currently that EDS / Ehlers-Danlos Syndrome has been an increasingly common condition for many years and generations, and is really one of the biggie conditions in the 'overlapping' model of disorders identified and labeled (and marketed or not to the public) by mainstream, organized medicine. 

<THANK YOU, SO VERY MUCH, TO THE GENEROUS SUPPORTER WHO HAS GIVEN SOMETHING TO ME FOR THIS DAY'S WORK in order to EDIT and IMPROVE the  TOPIC FOR ALL READING IN THE FUTURE! ~ Mardy>

The PayPal link made it super easy for them to become involved.  www.paypal.me/MardyRoss

You can contact me at area code 970 prefix 462 then 8662 as well (and I text).  I like to keep it simple. Of course I'm on Facebook

As usual for my topics, I've made this simplified at Lumigrate if you're wanting to learn about EDS / Ehlers-Danlos Syndrome, in that there are not a ton of "short attention span" topics to go looking around to find and then go through. Rather, the topic is EXTENSIVE and intended to be "one stop shoppin'" for those who want to dig in and learn from what I have found to be resources worth pointing out and encouraging YOUsers of Lumigrate to use!                   

This topic is certainly not meant to be 'done' in one sitting; think of it as a 'class' or 'seminar' / learning experience.   I suggest people make a point of having 'study time', and think of your health as a class that you're taking --- every day, for life.  Change your schedule and routine based on your priorities if you're not already dedicated to daily ritual of learning about what is going on with your health, and that of those you love. (This includes our pets and other animals too.)

Initially when I created this topic, I started with the story, below, and then symptom list, which you'll see immediately under the story from CNN. 

The CNN story is about a woman who is now a researcher in this area at MIT, and her journey as a young person through today having what she now knows to identify as "Ehlers-Danlos Syndrome / EDS" and "POTS / postrual orthostatic tachycardia syndrome".  However, it is important to note that NOT everyone with EDS / Ehlers-Danlos Syndrome is "elasto-girl" (or boy); there are many forms of EDS / Ehlers-Danlos Syndrome, as you will see, below. 

August 2015: I'm editing this in at this point in the topic because as I warmed up with, above, I've always saw 'overlap' of symptoms among so many specific and similar disorders that the "overlapping conditions model was essentially a foundational concept at Lumigrate.com within the first year of the website.  The YOU model" is foundational to Lumigrate's content, as well as functional medicine, where you're looking for underlying contributors and working at that level to correct things.  Furthermore, to overview, Lumigrate's foundation includes holistic and traditional approaches where mind, body and spirit are recognized (to make up the whole / hole in holistic).  (Crazy English language and spelling, eh? - grins.) 

I'd seen the overlap before creating Lumigrate in 2007-2009, and it was in the first year of putting information in the forums that I found a graphic of the overlapping conditions at a fibromyalgia nonprofit foundation's website that clearly was member-supported in order to not be under the control of the funding from the business sector. 

I was so thrilled to see it! It verified what I'd been saying to the experts on our 'team' at the clinic collaboration in my city in western Colorado which formed and lead me to leap on Leap Day 2008 out of mainstream medicine to "outside the box".  I'd been an occupational therapist since 1996, working since December 20, 1996 as an insurance-based mainstream medical provider. 

This "setback" in the short run, lead to advancements for me in the longer term, because I would turn to Facebook and the Internet and start interacting increasingly with people from around the world using Facebook.  Currently as I edit this in 2017, it is staggering how great the Facebook places can be for helping people learn and, if they persist with their efforts on Facebook, learn and improve their well-being level, or that of the other or others they are learning in order to help.

The information I focused upon in late 2014 and early 2015 convinced me that, essentially, we potentially all have 'the stuff' inside of us that's messing with our well-being, and it's basically one thing we're not so much made aware of currently which has been taking many separate routes as manifestations.  And it could be in people's best interests to get onto that sheet of music, so to speak.  

I'm editing in this link, which is from 2013, where a mainstream source is connecting two of the overlapping conditions -- something many others would have done, myself included, long before that.  www.ncbi.nlm.nih.gov/m/pubmed/23444824/  In this case it's taking FIBROMYALGIA and linking it to EHLERS-DANLOS SYNDROME.  

By late 2014, because of my Facebook study time, I had "become aware" of EDS / Ehlers-Danlos Syndrome and put information on Lumigrate, via this topic thread. I was realizing how I had been missed-diagnosed, mis-diagnosed, under-diagnosed, etc.  And I also would laugh hysterically looking at my own cover photo on Lumigrate which NOBODY had ever pointed out to me and said 'Mardy, look at your bendy-ness, hyperextension, strange joint angles in your cover photo....'  So you can share in the humor and awe of it, here it is:                          

I was 'connecting the dots' that the EDS / Ehlers-Danlos Syndrome powers-that-be were now positioned with funding and newly established businesses moved or created on the East Coast, outside Washington, DC. 

It was appearing to me that "they" (mainstream medicine's education / marketing / publications / education entities) were going to turn the 'spotlight' off of the now has-been buzz word of 'fibromyalgia' and shine it onto the new upcoming buzz word of EDS / Ehlers-Danlos Syndrome.  Therefore, it was very interesting, indeed, for me to see the prolific EDS / Ehlers-Danlos Syndrome advocate on Facebook, Contessa Courtney, post this link on August 6, 2015.

Contessa had been the one who happened along into a group about MTHFR gene mutation on Halloween weekend 2014, when I was a regular student and contributor at that time, having just learned of MTHFR gene mutation earlier in 2014.  I was trying to figure out what's valid and what's smoke and mirrors or 'buzz' about MTHFR.

Anytime something new comes along that has been known about for a long time but was obscure and now it's "all the rage", or as one provider said "sexy", my radar goes up and my fine tooth come comes out to scrutinize.  And I put on my detective hat and get out the magnifying glass in one hand and my 'connect the dots' pencil in the other.  Lots of money is made by these 'waves' and people rushing to try the new things, or pay the advisors for their time or their books or websites and so on. So, for your information reading this at Lumigrate, EDS and MTHFR have gotten that treatment from me.  Just sayin'.  So I hope this helps YOUsers reading this thread navigate these areas with a "grate / Lumi-grate" outcome.

Now, back to that story at CNN which I originally set up as the place to start learning about EDS before feeling the need to come preface it with my cautions and perspectives shared immediately above.

The link to the story (and the image with the lead-in information to picque your interests to go and start learning there is: http://ireport.cnn.com/docs/DOC-1081221 

About a year ago I came across the form my mother filled out to admit me to kindergarten. They had asked for a list of medical issues and my mom dutifully filled out every idiosyncrasy - easy bruising...
IREPORT.CNN.COM
 

There's a very streamlined, good overview of EDS / Ehlers-Danlos Syndrome at this link, with very good graphics to explain the biological processes, photos of the various outward symptoms of the skin, etc: www.mthfrheds.com/ (something I found in a secret Facebook group that I'm fortunate to be in).

ORGANIZATIONS re: Ehlers-Danlos Syndrome (EDS) and History Overview

A link to the Types of Ehlers-Danlos Syndrome page at Ehlers Danlos Network dot org, where there's a short video which talks about funding for research, NIH efforts, etc. 

www.ehlersdanlosnetwork.org/typesofehlersdanlos.html

 


List of symptoms is at this resource, please go.  As I typically do, I'll provide some of the information here for YOUsers to see why it is being recommended to go, AND hopefully encourages YOUsers to take my advice to take the time and use the energy to go and learn at the source I suggest.  
http://forum.notcrazy.net/index.php?topic=9571.0

Is it Ehlers-Danlos Syndrome (EDS)?
FORUM.NOTCRAZY.NET
 
For YOUsers ease, and to encourage you to know how good the information is at the above resource, here's a sample of what you'll find (which, since I have different formatting options, I have formatted to make it easier for YOUsers here to read and get the eye pop and etc...: 
 
World-renowned EDS expert, rheumatologist Professor Rodney Grahame (University College London) points out that, in America, almost 650,000 cases of EDS are missed ANNUALLY, based on studies that suggest almost 95% of cases presenting to clinics are missed, most often diagnosed with other things (RA/fibro/ME/CSF, thyroid issues, etc.).


This means that statistically there is a good chance that you have been misdiagnosed.

SYMPTOM LIST 

Do you or your family members  have any of these?

  FAMILY HISTORY IS VERY IMPORTANT AS IT IS A GENETIC ILLNESS
 
and because many symptoms do not manifest until later in life (so if an older relative has a related history it can be significant). 


Migraines, motion sickness, allergies, hay fever, asthma, excema, varicose veins, Irritable Bowel Syndrome, gastric reflux, nausea, gastroparesis (GP), hernias, diverticulitis, bendy joints or hyperflexibility (NB - joint hypermobility is not essential - many with EDS are rather stiff in the joints and muscles it now seems), soft skin, easy bruising and bleeding, frequent nosebleeds, slow wound healing, thin translucent skin that you can see the veins through or unusual scarring especially on the lower legs. Unusual stretch marks. PEM - post-exertional malaise, dyscognition or "brain fog" ....which may be episodic.

Positive Gorlin's sign (ability to touch your nose with your tongue - see top two rows of these pics http://www.bing.com/images/search?q=Gorlin's+sign&qpvt=Gorlin%27s+sign&FORM=IGRE)

Frequent ear infections and sore throats.

Joint pains, TMJ (Tempero-Mandibular Joint dysfunction - i.e. a sore jaw that hurts to chew, speak  or open your mouth), RSIs (repetition strain injuries)

Scoliosis, kyphosis, pectus scavatum.

Vascular and cardiac issues like aneurysms and mitral valve problems (MVP) and Chiari Malformation

Intolerance of heat and cold (possibly due to circulation issues or low blood volume)

Insomnia and unrefreshing sleep.

Associated conditions

Gastroparesis 

IBS (Irritable Bowel Syndrome....possibly due to an over-stretchy gut? ) - this can manifest as  constipation, diarrhea  or both, alternating.

Rheumatoid Arthritis, Hashimoto's Thyroiditis are  also often associated with
EDS / Ehlers-Danlos Syndrome.

Also POTS/OI (Orthostatic Intolerance and Postural Orthostatic 
Tachycardic Syndrome which may manifest as fainting, dizziness, heat and alcohol intolerance etc.


Fatigue conditions and FM/ME/CFS of course  - the "fatigue" can be severely debilitating and may get worse as you get older.


Overcrowding of teeth (orthodontic work needed), periodontitis and weak, crumbly teeth.

Unstable joints/proneness to sprains, dislocations, subluxations and hyperextension. Stiff joints and muscles, joints that click, early onset of osteoarthritis, chronic degenerative joint disease, muscle pain, frequent tearing of tendons or muscles.

Reynaud's phenomenon, Dupuytren's contracture, carpal tunnel syndrome 

Costochondriatis (a sharp strong chest pain, muscular in origin
 
 
Neuropathies.

Eye Issues
Nearsightedness is common, but so are other eye problems like intermittent blurry vision, blue sclera, droopy eyelids. 

EDS / Ehlers-Danlos Syndrome is also associated with pregnancy complications such as post-partum haemorrhage and miscarriages
and possibly with "growing pains"

Frequent infections
Photophobia - sensitivity to light
Hyperacousia - sensitivity to noise
heightened sense of smell
( these 3 likely due to the effects of excess adrenaline secretion)

Symptoms often get worse after meals (post-prandial exacerbation of symptoms) - likely because of the diversion of blood to the digestive tract after meals leaving less available for other functions.

Other Signs

Ganglion cysts  - rounded hard lumps eg on the wrists.

Petechiae (tiny red dots of blood just under the skin that appear for no apparent reason due to capillary fragility).

Piezogenic papules  - small fatty raised nodules on the inside of the heels http://www.bing.com/images/search?q=piezogenic+pedal+papules+pictures&qpvt=piezogenic+pedal+papules+pictures&FORM=IGRE

skin tags (Acrochordon) small longish pedicles of skin overgrowth on various parts of the body, esp the armpits; the wiki description is good but not their pic http://en.wikipedia.org/wiki/Acrochordon)

keratosis pilaris (small pimply red rash on upper arms that comes and goes  http://www.bing.com/search?q=keratosis%20pilaris%20pictures&PQ=keratosis%20pilaris&SP=3&QS=AS&SK=AS2&sc=8-26&form=AARBSS&pc=MAAR)

Pomppholyx http://www.dermnetnz.org/dermatitis/pompholyx.html

A youthful facial appearance (few wrinkles) is common in EDS.... however it sometimes goes with an aged appearance to the back of hands and Acrogeria http://en.wikipedia.org/wiki/Acrogeria
 
 
Acrogeria (also known as "Gottron's syndrome"[1]) is a cutaneous condition characterized by premature aging, more especially in the form of unusually fragile, thin skin on the hands and feet (distal extremities).[1] The prefix "acro" stems from the Greek akros which alludes to "extremity, tip" while the suffix "geria" comes from the Greek gerônwhich means "elder".

YOU do NOT need to have ALL these symptoms to have EDS, and few will have them all, but your family members may have some and you will have some others.

SIDENOTE - Anyone researching the lucrative "youthful appearance" field may want to study EDS genes and collagen because EDSers tend to look so young for so long! A youthful face with no fillers ! .....Madonna?
Likewise anyone researching the anti- aging field may want to study Ehlers-Danlos veins and genes as most of us feel 20 years older than we are much of the time for some reason so our bodies may have the answer to why people have less energy as they get older ..... just a thought.
 
Note from Mardy added January 20, 2015: Via the website's woman creator doing MORE outreach on Facebook in the MTHFR Gene Mutation group, posting a photo of touching tongue to nose and asking how many people in the group can do that, a conversation about tongue tie began which had her even saying 'this might be another thing that is associated with EDS that I wasn't aware of'.  Turns out there was some evidence of it that people turned up and there was just an overall great batch of information that was presented by a few 'good researchers' in the group.  
 
So using what they set up, I created a new topic on Lumigrate about Tongue Tie, that I think is VERY interesting as it's woven as holistic functional myofascial / tissue therapy provider website information out of Wichita, Kansas, layered with a great conventional speech therapists website out of Australia. And then examples of how the conversation level in the group can be so helpful, with encouraging people reading to look at their tool of Facebook and if they're using it to help with their education about these kinds of symptoms for themselves or loved ones/ children. 
 
AND I have a link set up there to bring people to this topic as well so if you're wanting to go back to the TT topic, ^^^ that's the link to get you back if you wish to take a link. ~ Mardy
 

 
See why I set up the link AND encourage you to go and see what ELSE they have?  Great information! AND, I note that many things on this list are similar to the symptoms list for the physical / body symptoms of pyrrole disorder, or pyroluria. So, more overlap? Or chicken / egg.... ????
 

 


AND the same NotCrazy dot net's information on POTS, which is closely related and thought to be caused by the EDS / Ehlers-Danlos Syndrome: 
http://forum.notcrazy.net/index.php?topic=9775.0

 
POTS - Postural Orthostatic Tachycardic Syndrome
FORUM.NOTCRAZY.NET
 

 

And from a Facebook group where I was being educated by an activist about EDS / Ehlers-Danlos Syndrome and the interrelated POTS, there was this from someone who I'll keep anonymous when placing their words on Lumigrate.  I thank those who contribute by being 'activists' in groups educating others about resources and things that have worked and not worked for them in these complex health situations where the consumer/patient has to SO be DOING the YOU model's approach. (And I thank the woman who had then seen what I was saying in comments and further facilitated my learning and sharing / educating of others -- it's a chicken and egg, spiraling upwards for beneficial gain for all with information situation!) 

My EDS symptoms have improved on Dr. Amy Yasko's Simplified Protocol. In particular her CoQ10 spray which has carnitines, and I take additionsl l-carnitine to help stabilize my joints. I know these two are important, because when I ran out my joints started loosening again. My reading eyesight improved also on her protocol. My TMJ doesn't bother me anymore (not gone but no numbness and no locking). My organs aren't prolapsing anymore, so I no longer need surgery to put a sling in to hold them up.

My rheumi was shocked, as he has never seen an EDS patient improve like me. He suggested I stay on her protocol and try upping my mito support since coQ10 and carnitine are mitochondrial supports.

When I started, Dr. Yasko hadn't published her own Simplified Protocol, but I found a list in her forum for "minimum supplements for adults with fatigue" and I used the starred ones *** Dr. Rich Van Konynenburg... Plus a couple of others. Dr. Rich passed away, so this list is Dr. Yasko's advice on how to do a simplified Yasko in the style of Dr. Rich Van K/Dr. Nathan. I switched to Dr. Yasko's Simplified Protocol as soon as she published it. I highly recommend following her advice on lithium. 
http://www.scribd.com/mobile/doc/113616573

http://knowyourgenetics.com/.../Simplified%20Protocol.pdf

http://chronicdiseaserecovery.wordpress.com/.../mthfr.../


Proactive Patients/Consumers

(And Their Mothers or Others as Advocates)

YOUsers of Lumigrate often don't know that one of the things that started me on this journey with the website was because I had started giving my patients with complex, chronic conditions a three ring notebook at their first visit / assessment with me, and we'd work on 'the occupation of being a health care consumer' in our occupational therapy appointments.  OTs can help people with strategies to increase their compliance with taking medications and supplements in accordance with how their provider has suggested and prescribed, following the advise of their providers about diet, and paying their bills and 'activities of daily living'.  

Many people only have OTs after a surgery and think all they do is hand out long handled gadgets and offer to again do with them what the PTs had done previously --- "no thank you, honey, I did that earlier today, why do it again with you?" I'd be told SIMPLY because the PTs were not trained nor thinking about letting the patients know that they ALSO had the OTHER kind of therapist and it would be bad for our productivity if we spent the time preparing to work with them and then had no billable time. Yes, there are many ways, small and large, that our medical system is just so ineffective, but I digress. 

I have not had the staff and time and funds to develop the videos, the website, the expert teams we've had in the past AND the ideal way of teaching and producing a system to sell to people to have them be able to ideally organize their medical records.  And also, there was a movement toward electronic and away from paper and we could only do one or the other, really --- so it seemed like it should just go to the back burner. But I've put considerable effort into this over the years off and on with ultimately nothing showing 'for it' on Lumigrate. 

And while I was creating the website, I realized that I wanted to not create any 'wheels' that were already out there, but to link to them and encourage our YOUsers to learn about them from Lumigrate. An example I remember from early on was the book FibroWHYalgia, by Sue Ingebretson.  She did such a marvelous job on a book that was so similar to what I had considered writing OR doing a website and my gut or intution told me to do the website. And I was relieved and overjoyed to see that the book that I'd envisioned was out there already! Yay for the patients today, they don't need to wait until tomorrow.... 

Well, the same is true for this presentation which you can download in PDF format about how to be a proactive patient.  I'd tried a number of different binders and folders and methods and came up with basically the same system that they have shown in their presentation.  A REALLY schnazzy powerpoint too with the photographs and using the zebra analogy and concept throughout, and other animals which makes it a visually appealing presentation by Shani Weber and Heather Butler-Pierce.  Here's the link : 

ednf.org/sites/default/files/Shani%20Weber%20and%20Heather%20Butler-Pierce.pdf

(They provide their emails at the end -- SASOEDS @ yahoo.com for Shani, and heatherbutlerpierce @ yahoo.com.)

And here's the link to the 2014 Annual Conference where you'll see the whole lineup --

www.ednf.org/2014-annual-conference

it is a VERY impressive list and everything that was presented is provided in video or PDF format.  "The Empowered Patient: Ways You Can Get the Most From Your Medical Team", by Shani and Healther is up fairly high in the list.  There are a few things that I differ with them on, however and want to point out that I'd change in this presentation,  

On the slide about keeping up with your maintnenace health issues like ANYONE else would, they just say 'get your vaccines' basically, rather than 'make a vaccine  plan after researching about vaccines and your condition and genetics, and then follow your vaccine plan'.  

As you'll see at Lumigrate's topic on vaccines -- vaccine plan and vaccine rights is included and, it's up to YOU to decide what you think is right for YOU.  Here's the link to the forum where the 'take-charge', proactive, be prepared for medical visits information is found at Lumigrate's forums: 

www.lumigrate.com/forums/be-prepared-medically-impaired-happens-all-ages/being-prepared-medical-visits-problems-best-l   (You'll see award-winning author, Martine Ehrenclou (Critical Conditions and The Take-Charge Patient) with topics in this forum.  Since becoming an expert at Lumigrate, she's gone on to much success in patient proactivity and advocacy, with KevinMD having published recent topics on data mining of medical information. In the presentation by Shani and Healther, I noticed some things that they include that have to do with consumer-focused medical records which might be things that Martine would look at in this presentation and say "I'd present that different".  I would say that I'd suggest wording added such as ... "if you're comfortable with using electronic medical records services".  

I'd really like to see the Lumigrate YOU! Model be included in future versions of their presentation, I hope they might learn about it and perhaps include it, because we're just on the same page / wavelength, and I was so pleased to have this NEW resource to provide related to patient proactivity. 

I also don't prefer the use of the term 'alternative medicine' ... it makes it 'beta' to the 'alpha' of organized, typical, allopathic medicine. But that's rather a detail, the vaccine part is something I really want to point out here before YOU go and learn from this EXTRAORDINARILY GOOD presentation.  Tons of resources they provide as well in the slides. 

I'm really impressed they include this, actually, and found with myself that I simply didn't have time to go, nor the money for the copays out of my health care budget, and the 'energy' to seek out things that were maybe going to just complicate things more for me that day or week didn't appeal to me so much.  You're trying to BALANCE LIFE and also be as 'normal as possible'.  But I have reflected and thought 'I'd hit my deductible, text X showed diverticulosis, so why didn't I ask my primary care doctor about a colonoscopy that year'... then I'd remember! Oh yeah, I was already taking so much time away from work to go to appointments I really couldn't get to it, it was on the list. 

Previously, I referred to the mysterious illness show on Discovery Health Channel about a young woman named Lynn and her incredibly proactive and appropriate mother (and other family members on her team of support) which was on  "Mystery Diagnosis". The link for that is the next one below, and I noticed they have a whole tab for it at one of the nonprofit organizations' websites that I link to, above.  

This show was very thought- provoking for me, as I had similar symptoms at about the same age as Lynn, just not as pronounced and they didn't get worse the way hers did, they seemed to get better when I went to college; POTS symptoms I'm referring to. What changed when I went to college? The first year I was eating in a dormitory. What did they put in their foods that were not like what I had control over (as I helped cook the meals or prepared my breakfasts, lunches and snacks independently from about age 8) ... salt!  

When I was doing the cookin' at home, which was half the time with my mother as we prepared dinner together every evening, we didn't use much salt.  I remember my sibling once making me eggs -- it was not usual for this to happen but that day it had worked out that way, and I couldn't eat them because of the amount of salt, which was the amount I would today put on eggs.  I've had to learn to like salt, don't ask me what THAT is about.   (But I also started getting UTIs frequently and the antibiotic catch 22 started which contributed to plumeting my wellness in my early 20s. What was that about? Sugars! And likely alcohol, but I thought I was doing well to not get the 'freshman fifteen'.  What did I know, it was 1978, I was 18. Oh, hindsight being 20/20.

Did I think of the change in salt being a good thing at the time? No! I just thought I'd 'outgrown it' as I had the growing pains or other symptoms. I'd started on birth control pills my senior year of high school because I was in a serious relationship, my first (which lasted seven years, half of which in marriage, unfortunately the vaccine required by the State of Colorado due to my low titers for rubella was 'the' vaccine that lead to vaccine reform in the US due to the high percentage of adults who were injured -- with symptoms of 'autoimmune disease' specifically the injury rate was 5%! 

The blood sugar continued to be an issue but I'd not seen the symptoms as two separate causes; all that time -- years and years, I was attributing EVERYTHING to blood sugar being low because that was the ONLY thing a medical provided had 'stamped with approval' and said 'yes, this is something you have and yes it is causing your symptoms'.  I continued asking about my low blood pressure and if that was why I was always cold all the time, had fatigue. Nope, everyone said you can never go wrong with low blood pressure.  

I remember specifically the very good RN that kind of ran the show at the student health center saying that to me.  I was there a LOT --- I'd had free health care before but it was a long drive so I didn't go much, and required my parents to line it up and they were distracted with their lives not mine so much -- because they were doing what needed to be done for the income and their investments and planning for retirement AND had symptoms of all these things which were quite advanced by the time I was a teenager.  

As a teen, the only testing that was given to me was for blood sugar and that was even bungled by the first clinic I was taken to by my parents. Then when the problem was still going on maybe a year or more later, they figured to try a second opinion. Since a blood sugar problem was found then I changed diet and the symptoms didn't change, yet I was not taken for more testing.  

I've even asked at about age 40 for a tilt table test, and for sleep disorders testing and in both cases I was given referrals to specialists who somehow only did a small portion of what I now believe should have been done, so I went missed-diagnosed. But I did get the glucose tolerance test of five hours since as a teen it was still dropping at hour number three with the beginner test, requring me to be jabbed all over again to get those extra two vials at the end; that was maybe one of the things that made me start to realize the allopathic system was messed up.

Why not just do the 5 hours to start with? And to see at the end of three I was right on the line for normal and low and be told 'it's normal, nothing to worry about' and have it be the parent and I who said 'it was dropping at hour three, let's FIND ANOTHER DOCTOR, go outside the network of providers at the clinic free to my father's employers' families --- that was Gates Rubber Company in Denver, Colorado, which had the first socialized medicine in the US, apparently, back in the 1950s at least and it maybe went back farther than that. He was hired there in the mid 1950s. 

Maybe there are some good things about going undiagnosed for so long, at least they didn't do interventions from the insurance-based, allopathic medicine world and I have been able to get a lot of things reversed and maintained a relatively good quality of life. But still, it's unfortunate -- it did really affect my functional capacity in my growing years, which seemed to be the ones where I had the most symptoms of POTS. More of the EDS / Ehlers-Danlos Syndrome symptoms started at the time the POTS seemed to subside. I had my first ankle sprain at 18, doing something simple and considering I used to run up and down and across mountains every day and never sprained anything, as well as walking on smooth surfaces (I sprained walking on a football field in daylight); just part of the Medical Mysteries of Mardy. 

Nothing is more tragic to me than seeing the people who are having problems when they are young and don't have proactive parents or for whatever reason have not taken it upon themselves to look via the computer and other resources and DIY.  Are we teaching our children at a young enough age to be proactive patients ? Should this not be part of their life skills that parents teach at home (forget about the schools and let's not get into that whole aspect and debate).  

I highly recommend spending the time to watch this if only for seeing the way the mother proceeded and the results that came from her efforts! No matter what a person's challenges are they're addressing, or helping someone as an advocate, this is a story that can be quite a good 'pep talk'! And to all the parents and other family members out there advocating on behalf of those you are responsible for, kudos, and I hope that what I've provided here in the PDF link, above, might give you some GREAT ideas about how to be even more effective! 

"Mystery Diagnosis" which examines real medical mysteries through personal interviews and reenactments, will take you through Lynn's life beginning at age 15...
YOUTUBE.COM

 Now, you might ask about all the various imaging  studies there are, and it turns out that there are advancements about that and that is a whole are to look into for people and decide what to try and obtain.
 
Here's something out of the Canadian press, about Ehlers-Danlos Syndrome / EDS which includes some information about UPRIGHT MRIs rather than the patient being supine, as this upright position will show different things with blood flow.
 
Sidenote: Head forward posture when sitting, and slumping / slouching is a symptom of these conditions. And this is something that I have had 'plague me' as well.  Is it 'low tone' of the neurological system such as we learn about as occupational therapists? I remember, likely since it applied to me, that my Intro to OT professor had said that with the growth spurt of children to teens, the muscles lag behind the skeleton in terms of not being strong enough when they have grown long enough to match the skeleton, and that is why teens tended to slouch. So there I was in my early 20s thinking 'but I'm still slouching'.
 
I ended up also finding out that people with a head forward and thus jaw forward and mouth slightly opened posture can be compensating for difficulties getting air into and out of the body because of structural problems of the head (as in sinuses) and throat/ neck area. Again, the way things overlap --- lots of dots to connect.  
 
It was about seven years ago that Jess Covey started to notice that something was wrong.
THEWHIG.COM|BY NURUN.COM
 

 


 

What I referred to above about Lynn's mother's proactivity, and the team around Lynn operating effectively to go from bafflement to solutions is represented in the Lumigrate YOU! Model, which I'll add here for reference: 

 
                           
 
 
 
 
 
 

When creating a new topic on a new subject the challenge has always been how to categorize things so that they're accurate with our progressive systems of medicine that Lumigrate is about, as that is different in the various kinds of medical models and systems.

Yet most people who have been steeping in the conventional, western, typical, organized medical system which is 'allopathic medicine' think with other terms as historically that's what we've all been taught and how many websites and books are organized. Why?  Because that's what our insurance or nationalized health care endorses think in those terms when looking for information.

Keywords and Searching helps with that, but it's also nice to have things bunched together into forums where people can look at what all's in the forum once they find the forum title overall to be one they're interested in, or they Search and find a topic at Lumigrate which brings them into that forum. 

Rather than starting a new forum for 'connective tissues', I opted to tuck this into the autoimmune forum and be clear with the title that Ehlers-Danlos Syndrome is NOT an autoimmune system condition. It is a connective tissue disorder.  

And there are many forms of it, which in all but one -- the most common one, too -- have had genetic mechanisms / explanations found.  That most common one is the "hypermobility type".  

"If you can't connect the issues, think connective tissues" is a saying which applies brilliantly to EDS. So therein lies the complexity. Allopathic medicine is reductionistic and teaches people to be 'convergent thinkers'. Our education systems that were in power in recent generations have increasingly reduced how we problem solve, and that includes the programs that providers go to in order to become clinicians. So that is leaving the field of health care open to innovative thinkers and growing appreciation of types of medicine where convergent thinking is done, clinical reasoning and problem solving.  

People are flocking to programs to become naturopathic doctors, homeopaths, chiropractors, etc., and the public is increasingly turning to them for assistance. And some medical doctors and osteopathic doctors are seeing the problem and going 'outside the box' of the conventional system of medicine to hang out shingles and have people reimburse them out of pocket the same way they would if they were going to a naturopath, homeopath, acupuncturist, etc.  

A MUST WATCH and look at the PDF of the slides is a presentation prepared and presented by Dr. Heidi A. Collins, and MD who presented in July 2014 at the EDNF Learning Conference in Texas (NF = National Foundation).  The presentation's video starts with your seeing dots on the screen, a few of which are connected. What is it that you'll see when all the dots are connected? Read along here and you'll see what ends up being revealed --- or watch to the end, and you'll find out! 

This is a nicely paced, easy to understand 50+ minutes of YouTube video which also has the visual 'power point' information she presents in the video available to download at the organizations website (which is identical to how we did our videos in 2008/9 at Lumigrate, so obviously I like that format!) 

When you get to the end of the presentation you'll see a connect-the dots of an elephant. The presentation's structure is built upon this concept of dots and connecting the dots. At about the half hour point into the presentation, she works in the fable of the blind men and the elephant -- each one grabs a body part of an elephant and thinks it's a snake or a big leaf, etc. but only when you see the whole thing --- or go around and feel the whole thing -- can you know it's an elephant. 

She also brings in about zebras all having unique stripes, no two are the same.  The zebra, and the stiff zebra, are marketing / branding images of the Ehlers-Danlos gang, same as the butterfly is used by fibromyalgia, etc. She shows how they do cluster into different types of zebra appearances, and some are more common than the others BUT still, no two are the same ever. It's a very effective analogy. 

She starts with the many types of connective tissue and I think this is imperative for people to get under their belts. You're going to encounter physicians and other clinicians who will try to tell you what they believe or know it is and it's going to differ from what Dr Collins is educating you about.  YOU become an educator to the providers.  YOU presenting at their office by phone or in person or email and asking about it, sending them resources about it makes you part of the activist circle that will help many patients be helped sooner than later by raising awareness and then providing something of educational value that YOU tell them is your recommendation.  I hope that this might be considered something you'd suggest to to them as it will give them a consolidated bunch of topics that I think are a good offering of resources for study. 

It's been since the 1990s that I was in the coursework at Colorado State University to become an occupational therapist if I was good enough and have some luck to get into the program, which I did for the 1994-1996 class, but I'm pretty sure I was not educated that some of the things she identifies as connective tissue were included in the information then.  Like adipose tissue --- it makes sense that it is a connective tissue, but do we think of it that way? Blood cells. This is a very good presentation. 

So she starts with that and gets those basics down at the start, and it might seem like it's a bit technical to some non medical professionals, who hopefully find this presentation and watch it and learn from it, and tell their patients and other providers about it (which as ALWAYS been one of the goals of Lumigrate. Print this out, take it to your next meeting with whatever type of provider and let them know 'there's something I found that I thought you might be interested in and benefit from knowing about --- as you'll be better able to help me if we can both learn some things that get us more on the same page together .. and you'll be able to help all your other patients as well going forward. And in the mean time, is there someone you recommend referring me to as I want to get going on addressing this now." 

She makes the point that people need to have healthy lifestyles in terms of diet and exercise. I definitely perked up at this because so many people with chronic pain conditions for whatever the causes are overlook the importance of exercise and activity -- BUT I saw so many therapists who didn't understand what was causing a condition so then they couldn't properly design the exercise or therapeutic activity care plan and the patients would be hurt (temporarily) by what was done in treatment. Then they'd no show for their next appointment and not give feedback to the clinic, so they would then say 'we don't want that kind of patient' and not understand that they could benefit from that kind of patient and not have their productivity and income affected by them negatively if they were doing better/ proper treatment.  

100% of the patients who were referred to the clinic where I was in 2005-2008 who had chronic pain had improvements if they were coming to me for OT and then I got them set up with the right PT for their needs and preferences, as well as in many cases going to the pain management specialist / psychologist who fortunately also opted to come into the new, big allopathic medical building when it was established and opened in late 2004. I started with exercises --- to do with proper breathing -- on day #1, and teaching the patient to get mentally centered and be able to tap into that inner voice inside of them, their inner wisdom and intution, as well as get good at 'pacing' and 'self monitoring'.  

I was teaching them from the start that THEY were going to be the ones deciding how long they'd do an activity or how many repetitions .. I'd set the cap only, which was an unbelievably low two minutes when we went to the gym to get going on walking or using an arm bike, or doing some simple exercises with dumbells (of very light weight but focusing on technique).

The PT that I'd have in mind was hopefully available to meet them quickly and then I'd do the work to get the PT orders from the doctor by faxing. And then the patient would see the PT from there out for that program's increasing AND for working on any body problems such as things being out of whack with the joints and tissues.  PTs have a lot of great skills, knowledge and can be one of the more frequented providers on a team for a patient with these complex chronic conditions, which are often baffling. And often misdiagnosed or missed disgnosed. Or only partially diagnosed.  

I, to this day, have never had a provider suggest that my symptoms -- which are many --- are that of Ehlers-Danlos Syndrome / EDS. But I've been figuring it out over the years. I had recently created some new information on Lumigrate about CRPS / Complex Regional Pain Syndrome after learning that some of the people with CRPS were having symptoms that seemed to overlap with what you'd think of as Ehlers-Danlos Syndrome. I had been working on content recently that was much about MTHFR gene mutations (very common by the way), pyrole disorder / pyroluria (also incredibly common and about as unheard of or unthought of to talk to patients about as Ehlers-Danlos Syndrome), and chronic Lyme disease / neuroborreliosis, which is about to become a flood of awareness in American and beyond, I think.  Again, VERY common that people have it lurking within and yet very few are aware that their symptoms, however slight or great, have something to do with Lyme lurking.

So then this begs the question --- what about that 'fibromyalgia' diagnosis, and the 'chronic fatigue syndrome' with and before that. Chronic Epstein-Barr Virus (CEBV) was the original late 1980's diagnosis when I lived in Fort Collins and the provider told me there was a wave of what was affectionately called 'yuppie flu' / CEBV there at that time.  This is not visible anywhere on the Internet, and I've verified with one other person from that area that I met via Facebook that they had heard the same thing when they were diagnosed around that same time. The infamous Lake Tahoe outbreak was a few years before that -- not that it was infamous then, but it is now.

I bring this all into this topic to hopefully  help people start looking in that 'divergent way' (in terms of convergent versus divergent thinking), and approach your own situation or those you are researching on behalf of anew.

Just yesterday in a Facebook group I noticed someone saying what their symptoms were and then in the same 'breath' attributing it to something and it was clear to me that they had figured out in the past what they thought had caused the symptom that lead to a diagnosis -- but with newer information you could take apart their case history and put things together a WHOLE different way and the person would then benefit by seeing more of the underlying, functional causes and perhaps do a better job today and going forward with how to address things and hopefully get better level of health and well-being. 

This presentation by Dr Collins does a wonderful job around 39 minutes in of saying that the symptoms can get better as you age, and hopes that young people hear the message to take care of your body as best you can witih lifestyle choices today.  

Many of the body systems were gone over that would be producing symptoms -- dental, ocular, gastrointestinal, cardiovascular, neuorological. Dysautonomia is mentioned specifically and it was a particularly interesting part of the presentation, I thought, as there are some forms it gets broken into: structural and functional, focal and generalized.  Things like POTS, neurocardiogenic syncope, neurally mediated hypotension, and orthostatic intolerance  of upright positions were brought in specifically here.

She shows a great graphic of women in corsetts with the fainting couch of the old days that we heard about in our novels and history books. "People can have as many as they damn well please" was worked in here which was coming off of something she presented prior to his point in the presentation -- applying it again to reinforce this important point she was hoping to make with the audience.

At 45 minutes she gets into the issues such as gluten intolerance, histamine intolerance, gut-related immunity dysregulation and how the dysbiosis occurs which affects the flora in the gut, and thus the immunity.  (Remember, we've always taught people at Lumigrate since year 1, 70% of your immune system is in your gut.)  So that's how the 'leaky gut syndrome' occurs, she and others believe, though naturally there are varying opinions, she points out.

At 47 minutes she addresses other things such as pulmonary (asthma -- maybe your connective tissues in the lungs are the problem, not what everyone's thought, particularly if you've not responded well to treatments.). Pelvic prolapse, endometriosis, painful / irregular periods. Endocrine abnormalities. Psychiatric/ behavioral health aspects -- OCD, ADD/ ADHD, autism, anxiety / panic, depression, all can have much to do with Ehlers-Danlos Syndrome / EDS.

Even the proprioception issues, which affects your body parts knowing where they are in space, apparently can affect the mental state, she points out. Yes, that makes sense --- when I think back to my lack of great coordination, I was not very successful jumping rope on the playground, being able to get up onto the top of the bars where the cool girls sat perched like birds up on the highest of the three -- I'd be on he low one trying to just figure out how to hook a knee over the bar (which I was able to do) and then twirl around the bar (which I was not able to do).  And the President Kennedy Physical Fitness Test that we had to do every year in school, which I was never doing that well at, despite that I was a VERY active girl living on mountain property and doing a lot of house work, outdoors work, hiking and etc.  The things that 'never added up' ..... 

In thinking back I hope this example will help those reading.  Two things occurred and stand out from my 18th year of life.  I could not motor plan to learn how to dive in swimming class in college, which was going to lead me to getting a lower grade on my report card, and necessitated me meeting with the professor independently and she couldn't figure out why I couldn't do it.  I told her maybe it was from seeing someone get badly hurt and filling the deep end of the pool with blood when I was waiting for the pool to open for us to free swim when my mother was going to college in order to become teacher -- in the summer one year we had the BEST summer going along with her and being at the pool while she was in class.

So based on that it was maybe psychological, she passed me with the A that I think I deserved for how hard I tried in her class. I'd badly sprained my anke one month into the semester and could not swim for a while, which was excused as long as I attended and watched from the bleachers. Why did I sprain my ankle so badly? I was walking in daylight on a football field with my future father in-law, it was homecoming and I'd come home from college and my boyfriend / fiance was in the game as he was a year behind me in school.

Why did it swell so badly, why was the injury so great, why did it take so long to get back to being able to get it the pool and out of PT working on it at the student health center? Why did that same ankle and leg get so bruised twenty years later when I rolled it in a hole in a dark parking lot, requiring over $10,000 in care that left me with problems that almost ended my OT career working with skilled nursing and hospital or clinic patients at that time? Fortunately a new PT was hired where I worked who was from Canada and he knew Mulligan techniques and he found what was wrong -- my fibula had not connected back correctly and my ankle needed to be taped in a very particular way every second it had weight on it for up to six weeks, maybe four. Did I get off the hook at four? No, it was six before it was re-attached and stable enough. Today, would that PT say "you have symptoms of Ehlers-Danlos Syndrome, or EDS"? I don't know, but I hope so. And if not, I hope he soon encounters the information about Ehlers-Danlos Syndrome / EDS.  

I hope that all clinicians who work with patients, as you can see in this presentation outlined by Dr Collins, become aware and then EDUCATED about Ehlers-Danlos Syndrome / EDS and they can tip the patients off, who then are, as we teach here with our cornerstone concept, the one responsible for looking into it and finding the providers who can help them find their best level of well-being. I'm doing my part, and I hope by using Lumigrate to educate others, it is helping to create the ripples and waves that ripple out so that this becomes as well known as it is occurring in those it impacts! 

Hyperlink : www.youtube.com/watch

Regular link: https://www.youtube.com/watch?v=H0jaF6Rnuv4&feature=youtu.be

And here's what is said there about the video, note the link to get the PDF of the slides:

Published on Aug 9, 2014

Dr. Heidi Collins' general session, "If You Can't Connect the Issues, Think Connective Tissues," at EDNF's Learning Conference in Houston, Texas on July 12, 2014. A PDF containing the slides for the presentation is available on http://www.ednf.org/2014-annual-confe....


Since you've learned in this thread and from Dr Collins' presentation in particular how Ehlers-Danlos Syndrome is NOT 'autoimmune', I thought I'd give you an example of a paper that says it is. It's written by a US Army doctor, and was in a peer-reviewed journal from the conventional, organized, standard medicine world, albeit from the osteopathic realm.  It seems that the medical doctors ruled and then absorbed osteopathic and then the insurance companies starting recognizing chiropractic and that sometimes gets included in clinics that address people from an insurance-based perspective.  I'm not sure of all the politics behind that, nor history, but I thought I'd just point it out and mention it. 

I think the article at the link below had some really good information in it overall, in addition to showing how there are these 'differences' of how to categorize things going on.  Most notably, it refers to benign joint hypermobility syndrome as thought by some to be on the continuum with the other conditions, just a less severe case.  

www.jaoa.osteopathic.org/content/106/9/531.full


 

An article from NCBI NIH dot gov ... www.ncbi.nlm.nih.gov/pmc/articles/PMC3512326/

 


 

And an altnernative healer who has worked with the EDS National Foundation: 

www.serenityspamaumee.com/acupressure/


 

Facebook Groups: 

stiff zebras https://www.facebook.com/groups/455374384560623/

EDS articles and info
https://www.facebook.com/groups/588817404473821/

EDS/POTS Australia and International
https://www.facebook.com/groups/598876153485778/

good Australian Doctors
https://www.facebook.com/groups/287952358017187/

Good European Doctors
https://www.facebook.com/groups/372374862916395/

Good North American Doctors
https://www.facebook.com/groups/1438285386415297/

 

 

Live and Learn. Learn and Live Better! ~ Mardy

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

Mardy Ross's picture
Mardy Ross
Title: LumiGRATE Poster - Top of the Totem Pole
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User offline. Last seen 11 hours 41 min ago.
Know about "Floxing" from a class of antibiotics contraindicated

There are other resources about this, but this is one that I liked to get things started. NOT that I agree with everything or exactly what this woman suggests to people near the end of the article. And the commenter, who should be credited for being proactive, tracking down magnesium oil and using it, is now thinking that she's a fan of 'essential oils' when in fact she's really a fan of topical application of a mineral rather than supplementing it by mouth through the intestines.

The bigger point is that they're ACTIVE and proactive, and learning and doing new things AND telling others about it and helping the movement grow. And this is but one article in the Articles Authored By You at the website Surviving Cipro. The author shows clearly how she was initially angry at her provider for not knowing what is on the internet about the medical conditions she has and the drug he prescribed; but it was not officially contraindicated and that's what the providers go by.  

She then said she realized she had not looked into it and realized it was ultimately a step that could have been done to prevent the problem.  This is so critical, we HAVE to check what our prescribers are doing or have someone help us with that if we are unable to. It truly is a time when someone who has the tools of the Internet and some experience can rapidly figure out if a provider is going off course. 

And she refers to her intution telling her to not take the ones after she'd spoken with the doctor but he wanted her to take through a certain amount rather than starting and stopping too soon. I remember when a doctor was prescribing some antibiotic for me and it just didn't sound right. I questioned it.  I was reassured this was the new way with the new medicines.  And I was fine the days I was on the medication, which was only three. Then the first day after it was like I was in orbit or just only half here or something. I wasn't tired or anything like that, I felt drugged and not in a FUN way, like I was watching my life going by me and I was only half in my body. 

So here's the link, I hope that it is a good resource for people to be aware of, and as I said that's a starting point if anyone is wanting to look into that aspect more, there are a lot of other resources online. 

www.survivingcipro.com/articles-authored-by-you/cipro-magnesium/


 

And another resource I found on Facebook (as you'll see, below, the invitation was made to freely share it, so I am taking them up on that, they said without crediting the writer so I am abiding by their wishes, but THANK YOU to all who work to educate and make it a priority to get the information circulated and aren't being proprietary.  I hope you know how honorable that is in my eyes.) 

WHY bother to get an EDS (Ehlers-Danlos Syndrome) diagnosis? How will that help me ?
20 GOOD REASONS

  1. it is genetic so you may want to know for your kids/ grandkids who may get it worse than you - and to avoid passing it on if you plan on kids
  2. there are associated cardiovascular risks so you need to have an echocardiogram every 5 years - for all types of EDS esp to rule out aortic arch issues.
  3. it is a great relief if you get a diagnosis because, when you understand it, it explains all your symptoms logically and you do not feel like you are crazy, depressed, anxious or have social phobias - EDS has physical reasons for all these.
  4. they estimate that one in every 100 people have it but are just undiagnosed - if we all get diagnosed and the huge numbers with EDS are realised we will get more research and a possible cure.
  5. there are great symptomatic management strategies for it once you now what you are dealing with - and getting a correct diagnosis is a basic right.
  6. you can connect with others who have it too which is a great relief and a good source of information
  7. there are pregnancy risks such as post partum haemorrhage and miscarriages which you can be on the alert for
  8. there are dental issues like poor teeth, dental crowding and periodontitis that you may want to take extra care over - EDSers often need more local anaesthetic for dental procedures for example.
  9. sometimes it helps you realise what other symptoms you DO have - eg you may not know what brain fog is until you read about it as I did and it clicks - "oh yes, that is those days when I lie in bed all day and can do nothing and feel like i have a hangover for no reason"...same with heat intolerance - why you are worse in the heat, photophobia (sensitive to light) , hyperacousia (sensitive to noise) etc
  10. there are many eye issues associated with it such as near sightedness and detached retina so you may want to let your optometrist/ophthalmologist know about it.
  11. it can help if you are giving up smoking to know that nicotine is a stimulant and part of the reason you feel bad is that smoking seems to mask some of your EDS symptoms so you feel better when you smoke....ditto for caffeine which is a vasoconstrictor so if you are addicted to cola drinks.....
  12. some of the symptoms - brain fog , crashes, can feel like depression when they seem to hit "out of the blue " - these can be relieved by treatments such as rehydrating with electrolytes, wearing compression garments etc and maybe you do not have depression after all....
  13. It can help explain seemingly unrelated issues involving multiple body systems. Also why an injury can "move" from one joint to another (e.g. you splint your wrist, and it may cause problems in the neighbouring joints - eg. thumb and elbow because all the joints are susceptible to overuse injuries.)
  14. you can get appropriate management with knowledgeable healthcare providers (e.g. physios who know about hypermobility and what kinds of treatments to do/exercises to give) and learn joint protection strategies. And you can avoid unnecessary treatments and tests.
  15. EDS can pre-dispose you to allergies which can lead to a risk or possiblity of anaphylaxis.
  16. EDS is now being linked to MCAD - mast cell activation disorder - which for many is treatable with new protocols that bring great symptomatic relief (eg Zyrtec/Zantac Combo)
  17. Another one of the symptoms is dysphagia (or difficulty swallowing) and choking on fluids, food or sometimes just your saliva- this of course can also be potentially very dangerous indeed.
  18. This point is from Dr David Chorley: "Oh and I just thought of a real life example from my own medical practice (yes I'm a doctor who knows about EDS) : A significant number of EDS patients have blood clotting problems, so I have initiated my own protocol (!) of screening teenage EDS girls for Protein C+S, Anti-thrombin III, Factor V Leiden and homocysteine. Out of my 150 EDS patients I have found about 10 with defects. This is huge because if a young woman goes on Birth Control Pill with a clotting disorder she can have a stroke or myocardial infarct."
  19. Anyone with EDS should totally AVOID fluoroquinolone antibiotics which can cause damage to connective tissues like tendons and ligaments.
  20. AORTIC DISSECTION IS OFTEN MISSED AND MIS-DIAGNOSED AS A(sometimes fatal) HEART ATTACK (as sadly happened with actor John Ritter). WHY all types of EDSers need an echocardiogram at least every 5 years - to check the aortic arch

http://www.thedoctorstv.com/videolib/init/1548

 

(Please feel free to copy and share this widely without acknowledgement - Except for Dr David Chorley's excellent point; he would like acknowledgement to remain included please.)

Someone with vascular type added this useful comment too:

The comorbid conditions are much easier to look for/into if you have an EDS diagnosis. Doctors (especially in the ER) will take you more seriously with anything if you have an EDS diagnosis. I'm 25 and I have osteopenia, but no-one would have thought to give me a DEXA scan except my geneticist who knew about my EDS.

No one would have thought that I had grade B erosion of my esophagus except that I was throwing up blood. I had to ask for a tilt table test to diagnose my POTS myself. My cardio didn't think it would matter. An ER takes me more seriously when I have blood in my urine, knowing that I have EDS and possible vascular type. There are so many benefits to a diagnosis and unfortunately a lot of them are in how doctors themselves treat you.

Also, EDS presents certain amount of symptoms. While others are not too common with EDS. The blood in my urine can be either vascular EDS or is caused by something else (according to my geneticist). I have an increase in CK levels - probably not due to EDS. I have slowing on my EEG and elevated pulmonary pressures, again probably not due to EDS. But without a diagnosis/geneticist/EDS specialist I would not know any of that. So now I can get other things diagnosed as well.


 

More Sources About Floxing

The Best Image EVER to show what we hope antibiotics do and what this class of antibiotics can and DO do, is found at the website by artist and activist Billiam James -- The Myth of Floxing .....

www.billiamjames.com/myth-of-floxing/

and a nice site for people to share their stories about damages done to them from taking these medications:

floxiehope.com/my-story/

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

Mardy Ross's picture
Mardy Ross
Title: LumiGRATE Poster - Top of the Totem Pole
Joined: Feb 16 2009
Posts: 1933
User offline. Last seen 11 hours 41 min ago.
PT / Exercise / Activity and FUN w/Ehlers-Danlos Syndrome (EDS).

ANYONE who knew me in my career as an occupational therapist (OTR) has known that I was aware of the treatment for visual processing problems from before I was an OT / occupational therapist .  Had I not taken it upon myself in my late 20s to get the vision therapy my parents knew about (due to my mother being a teacher specializing in working with the learning disabled elementary students at our local elementary) but did not have it in them to do what it took to get me to therapy, even in summer vacations (truly inexcusable unless you peel the onion of what my mother had, undiagnosed), I'd not have been able to do well enough on grades to get accepted into a challenging program that sets the bar as high as the OT program at Colorado State University did in my day (and maybe still does, I don't know). One in six who applied were accepted and the average GPA on most recent 45 credits was 3.74 the year I got in.

In year two of my new career as an OT, I was fortunate to wander into a career fair and was turned away from going over to the high tech side, where I wanted to get into HR, as I had done some HR in my previous job and was good at it.  I am good at looking at cases and making assessments about people's abilities and disabilities and what would be good work for them (and not), too. I can "size people up" in ways that are usually fairly accurate, if not surprisingly accurate, I've been told. 

So I was milling around on the general side and saw a booth about a driving school, and I'd not learned in my schooling or my internships about driving rehabilitiation or the process to take away driving privileges. But in my second year as an OT / occupational therapist I'd had a doctor simply write an order based on his opinion without seeing the patient try driving, which had then made the patient feel he'd not had a fair shake. He was not anywhere near safe to drive, I could tell that, but it would have helped the patient to SEE THAT by failing in a simulator, for instance.

So, based on my approaching their booth that day at the career fair, I ended up becoming the first of three directors of rehabilitative driving services they had before removing the program with the economic downturn of 2008/2009.  I had more vision therapy in the first year of my OT career in my mid 30s because I was having difficulty filling out the small boxes of logs for billing on treating OT patients, and my company sent out the big manager who was supposed to make it so they could fire me.

She happened to know of Dr Lynn Hellerstein in the Denver area, and so I made an appointment. Lynn (as we became professional friends) was a "grand pooh bah" of vision development, and I made more improvements as she and her staff were more experienced that the ones I'd gone to in Fort Collins in the late 1980s. My eye muscles had gotten fatigued first from their small size when I fell into a severe case of chronic fatigue immune deficiency syndrome, it was called at that time. So, the silver lining was I then had a big problem with vision (from brain function) that was getting in the way of functioning for all tasks, and I then pursued an eye doctor I found in the yellow pages saying 'vision therapy' in the ad. 

At MasterDrive, I told them about the big light board that helps you get your visual processing responses improved, and they purchased it.  After that, at other jobs or contracts, I'd suggest things like the equipment that you see in this video. I even had someone write a software program we'd put through a projector to the wall that would do what some of this equipment is doing! And then we'd not have the opportunity to use it. Money wasted in a way, but also maybe not -- maybe it was helping me progress professionally whether used or not; maybe it was showing at an esoteric level where I was going and so I would eventually be finding this information others are do-ing now!

So I very MUCH appreciate how much work it took to get the equipment in this video produced AND to have a clinic come together with enough funding to purchase it and the space to house it, and the staff to staff it, etc. 

Gyms in PT clinics or gyms in the community as for-profit gyms could be looking at this and perhaps see new opportunities. I encourage you watch this, it's very easy viewing and likely could give YOU ideas of what you might do in your own community or home gym even.  Show it to a qualified therapist, you should be able to come up with things to do that would be this type of treatment, but your own little / beginner way.

That's better than nothing! As our fictional Yenta at Lumigrate used to say in her stories as a sign-off .. "It can't hurt!"  (You can find Yenta in a forum in the chronic pain / fibromyalgia section of our forums at Lumigrate if you're interested.. she's a hoot of a wise old woman character for sure!) 

Yenta's write made this Peace Fleece tie blanket and sent it to me at the holidays in 2010.  In 2011 this photo was taken in Fruita, Colorado at the Recreation Center with a woman who was from that community, and who I'd realize after learning of Ehlers-Danlos Syndrome / EDS perhaps could have benefitted from a topic like this one!  Thank you to Yenta, and to this lovely woman posing with our 'awareness raising' tool.

 

www.youtube.com/watch

Published on Oct 21, 2014

A physicians meeting on October 8, 2014 led by Jan Dommerholt, PT, DPT, MPS, DAAPM that discusses EDS in the context of physical therapy, and how PT and exercise can be tailored for better results for those with EDS. The meeting was followed by a tour of the PhysioFitness facility; for more information, visit www.physiofitness4u.org .

From the Services tab at PhysioFitness4U dot org:

 

Services

PhysioFitness is uniquely positioned to meet the challenging needs of a wide range of patients. Individuals with Ehlers-Danlos Syndrome (EDS), for example, will learn how to stabilize their joints and move safely without pain. While we are known for our excellence in working with patients with EDS, we provide the same level of expertise and quality to a variety of other physical therapy diagnoses, such as:

  • Ankle sprains, strains and injuries
  • Arthritis Back pain
  • Carpal tunnel syndrome
  • Cerebral palsy
  • Chronic headaches
  • Fibromyalgia
  • Foot pain
  • Golfer’s elbow
  • Hand and wrist pain
  • Hip pain or problems
  • Knee sprains, strains and injuries
  • Migraine headaches
  • Motor vehicle accident injuries
  • Myofascial pain
  • Neck pain
  • Osteoporosis
  • Plantar fasciitis
  • Pre- and post-operative rehabilitation
  • Rotator cuff injuries
  • Sciatica
  • Shoulder injuries
  • Spinal injuries
  • Sports injuries
  • Tennis elbow
  • Tension-type headaches
  • Temporomandibular joint (TMJ) disorder
  • Whiplash injuries

For athletes interested in improving their performance, speed, or agility after an injury, PhysioFitness offers multiple options.

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

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Marfan dot org on EDS / Ehlers-Danlos Syndrome

Marfan dot org had a good overview of EDS / Ehlers-Danlos syndrome and then had links to download more information for the two more common forms, which is the hypermobility and then the vascular. Since this thread was framed as being about EDS and Marfan is overlapping with it, I figure it's good to have more about Marfan at this point.   

www.marfan.org/ehlers-danlos

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

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Hypermobility Associated with Gut Problems - Research Funded Too

 "Groundbreaking" research has been done that has connected hypermobility with gut problems.

You'll see that Ehlers-Danlos Syndrome /EDS was worked in as an example in this article.  As I've said elsewhere in this topic (in the original portion, above) since studying EDS / Ehlers-Danlos Syndrome intensively in late 2014 when I became aware of the new resources about it, the funding in late 2014 on the East Coast of USA that 'came together' and how they're developing things indicates to me EDS / Ehlers-Danlos Syndrome is the "next big thing". 

The above-mentioned gym, headed by a PT that's branding on Ehlers-Danlos Syndrome /EDS, and then in their website, says they 'also see' people with a whole list of VERY well known disorder labels -- fibromyalgia, autism, Parkinsons.  Dots....  Connecting the dots..... 

The light of the mainstream and what they want people to know about is starting to come OFF of other things and ONTO Ehlers-Danlos Syndrome / EDS is my observation.  Follow the money, think about who all is involved, and read the tea leaves, as well as between the lines. Be an educated consumer.  

Think about this: With all the things to study all these years, with all the funding and our knowledge today of the medical research industry and how it's been increasingly corrupt within organized medicine's increasing collusion with other organizations, AND all the people who have these horrendous problems with their gastro-intestinal health who have hypermobility, and anyone who has this in their families (or patient caseloads) seeing the connection of the two --- WHY would it take until 2014 to have this kind of study results to publish out to the people?

Don't be duped. I bolded the highlights I thought most important Lumigrate YOUsers see, including who funded the study. Always follow the money, and think about 'all that'. 

And then they, of course, end with relating the need for more money to come up with treatments, hopefully in 5-10 years. How long do you really THINK they've studied this and it's not been published for the public? A while, it appears they're likely with things long ago in R&D related to this --- their kind of medicine for symptom management would be my first guess, not for the underlying problems.  Though sometimes you can find evidence of BigPharma having gotten patents for things that would indicate they know how to solve issues but they're wanting to have the patents on them and then perhaps get around to developing them, or not, when and if they decide it's time.  Let me guess, there'll be a 'run' or 'walk' for 'the cure' to keep people thinking the research still hasn't been done to find the reasons and cures.  Anyone with abilities with the Internet can easily find there have been people who have cured themselves of just about anything so --- why would you contribute to fundraising to organizations who are misleading people? 

What about just going the route of being an educated, involved consumer or provider looking for underlying causes, and figure out what's causing it then solve the underlying reasons it occured -- if possible.  Reverse symptoms.  These are overlapping conditions, and when you look at it from far enough distance, 'everyone has it'.  

The number of people who would not have any kind of symptom is very low, and that would indicate they're in the complex chronic pain / fatigue / illness continuum somewhere -- in other words they're at the far end opposite of dead from "whatever" and they're totally well.  Maybe the more we realize how many things have the same underlying reasons for different symptom constellations to develop, the faster we -- the people who are unwell, not the research and medical community --  will find their heads together in a way that can solve things.  I hope so.  Perhaps Lumigrate will play a small part in that. Better yet, bring in the medical people who have the ability to see it, too. Many treatments that many people have successfully used have been out there, and Codex is an increasingly known factor that threatens what people will be able to purchase and utilize. (If you don't know about Codex, I have information about it on Lumigrate as well, just use the Search bar.) 

So allopathic, organized medicine will look at this one way, and the System will try to control it their way. Functional medicine, biological providers, traditional and holistic providers will see this another way. And there will be patients following on both sides. Which way are YOU going to see it? It would be nice to think we'll have the freedom to decide what we want to have for treatments (or not if we opt not). I guess we'll just have to see what comes.  In the mean time, the light on EDS shone again here. Make notes. 

Here's the link. 

www.medicalnewstoday.com/releases/275642.php

And here's a bit of what you'll find at this link: 


 Scientists from Queen Mary University of London are carrying out groundbreaking research which, for the first time, investigates the link between hypermobility (double-jointedness) and gut disorders.

They want to know why hypermobile (double-jointed) patients with flexible joints and stretchy skin are more likely to have digestive problems and stomach pain.

The study focuses on connective tissue which is found throughout the body and acts as scaffolding, supporting and binding all the other organs and tissues.

The researchers have observed that:

  • connective tissue may form "the missing link" between hypermobility and gut disorders;
  • patients with joint hypermobility, who have a genetic defect in the connective tissue, may also be likely to have abnormal connective tissue in their gut.

This was the first study to investigate the association between the two conditions. It was funded by the charity Bowel & Cancer Research.

The findings provide hypermobility patients with a possible explanation for their symptoms and reassures them that gut disorders may be a key part of their disease. It also allows doctors to treat patients holistically, rather than focussing on organ-specific pain.

Qasim Aziz, Professor of Neurogastroenterology at Queen Mary University of London, led the research. The clinical research fellow who collected the data was Dr Asma Fikree, also from Queen Mary.

"Patients with hypermobility disorder often suffer chronic abdominal pain and a range of gut symptoms. They are frequently misdiagnosed, undiagnosed or wrongly diagnosed and have poor quality of life," said Professor Aziz.

"Our research has demonstrated that there is a potential association between hypermobile joints and gut symptoms. This observation allows us to provide a better explanation of symptoms to our patients and tailor our treatments more effectively."

He hopes that physicians throughout the world will be made aware of the association between the two conditions, and that diagnosis and therefore appropriate treatment will become more routine.

The findings are published in the journal Clinical Gastroenterology and Hepatology.

Professor Aziz's research team studied 708 patients who suffered from a range of conditions including Irritable Bowel Syndrome and reflux disorders for which there is no cure.

One of them was Lara Bloom, 33, who has Ehlers-Danlos Syndrome, a genetic condition which affects the joints. As well as being hypermobile, she suffers from constipation, stomach pain, bladder problems and gynaecological issues.

"The symptoms began when I was 13 but no one picked up that my flexible joints were connected to the gut problems.

"It was put down to growing pains, hypochondria, not having a very high pain threshold. I was 24 when I was finally diagnosed," said Lara, now 33 and living in Hertfordshire.

"My diagnosis brought a lot of relief. After 13 years of chronic pain, there was finally a reason and I knew I wasn't going mad and I could live a long life."

The aim of the Professor Aziz's research project was to investigate the importance of connective tissue and its relationship to functional gastrointestinal disorders (FGID) where no apparent cause could be found.

In a large epidemiology case-control study, scientists compared the prevalence of hypermobility in patients with and without gut disorders to discover whether they were linked, and if so, how.

A total 708 patients were split into those with gastrointestinal (GI) disorders (eg, Irritable Bowel Syndrome), those with organic diagnosis (eg, stomach ulcers), and those with a reflux disorder (eg, acid reflux disease).

The prevalence of hypermobility was highest in those with Functional Gastrointestinal Disorders (FGID) (38%) and reflux disease (40%), as compared to those with organic GI disease (26%) and patients without GI disorders (26%).

Hypermobile patients were also found to be more likely to have postprandial problems (ie, after eating), bladder problems and stomach pains.

Professor Aziz is now seeking funding for a large-scale project to investigate further the links between hypermobility and gut disorders so that more effective treatment can be developed, hopefully in the next five to 10 years.

"A lot more research is required to understand the scientific basis of this link," he said.

 


And one might hope that there will be further study on what's going on to cause these issues to occur, now that the association has been confirmed by science (I doubt any knowledgeable patients were surprised by these findings).  

Live and learn. Learn and live better! ~ Mardy

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

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Cervical Pain /Headache / Migraine; Ehlers-Danlos Syndrome (EDS)

 Contessa Courtney is someone who I have learned so much from on Facebook in the last few moths, which inspired me to create this thread which has had 833 reads as of now as I add this comment on.  Here's a very recent one about head and cervical pain with Ehlers-Danlos Syndrome(s), a connective tissue disorder. 

 

PAIN

Castori et al 2015
Connective tissue, Ehlers-Danlos syndrome(s), and head and cervical pain.
Castori M, Morlino S, Ghibellini G, Celletti C, Camerota F, Grammatico P.

Am J Med Genet C Semin Med Genet. 2015 Feb 5. doi: 10.1002/ajmg.c.31426. [Epub ahead of print]

Abstract
Ehlers-Danlos syndrome (EDS) is an umbrella term for a growing group of hereditary disorders of the connective tissue mainly manifesting with generalized joint hypermobility, skin hyperextensibility, and vascular and internal organ fragility.

In contrast with other well known heritable connective tissue disorders with severe cardiovascular involvement (e.g., Marfan syndrome), most EDS patients share a nearly normal life span, but are severely limited by disabling features, such as pain, fatigue and headache.

In this work, pertinent literature is reviewed with focus on prevalence, features and possible pathogenic mechanisms of headache in EDSs. Gathered data are fragmented and generally have a low level of evidence. Headache is reported in no less than 1/3 of the patients.

Migraine results the most common type in the hypermobility type of EDS. Other possibly related headache disorders include tension-type headache, new daily persistent headache, headache attributed to spontaneous cerebrospinal fluid leakage, headache secondary to Chiari malformation, cervicogenic headache and neck-tongue syndrome, whose association still lacks of reliable prevalence studies. 

http://www.ncbi.nlm.nih.gov/m/pubmed/25655119/


 

Per Contessa Courtney who posted this on Facebook:

"I would question the statement about lifespan in EDS- with so few people ever diagnosed with EDS how do we know who/how many have died young from it without ever getting a diagnosis?" and went on to discuss something with a cousin that had to do with vascular. 

Live and Learn. Learn and Live Better! ~ Mardy

 

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

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Deliciously Ella:Bedridden with POTS, She Left Convention 4 Diet

I'm so glad one of Contessa Courtneys groupmates posted her story and a photo of an article a neighbor brought her about a young woman named Ella who tried conventional medicine's approach, as you'll read below in the information at the link to her website's 'philosophy' page (which is the 'about').  By changing her diet, she changed her health status and went on to complete schoolings and now has agents, managers, more agents, and a cookbook that was to have been published early in 2015.  I enjoyed looking around her blogsite / website at the photos of her, you can see the symptoms of Ehlers-Danlos Syndrome with the mechanics of her hands.  I remember having photos taken of me for a brochure in 2008/9 when starting Lumigrate and my assistant used one camera while I was shown working with another video camera and tripod.  

I remember thinking that I looked freakish with the way my hands looked, and find it so interesting I was almost 50 at that time and had no idea the problems that plagued me as a young woman were POTS symptoms (and I still have symptoms, I suspect I have the vascular form of EDS if one were wanting to find labels from convention/ mainstream).  I know that it was of benefit to me that my family ate better than the average American family in 1960-1980, when I was spending my 'formative years' with them. I have focused on food as medicine since day #1 on Lumigrate, and wanted to add this topic into this thread within the EDS/POTS/Marfans information rather than having it separate in the food forum in the nutrition section at Lumigrate. 

Here's the link, please take it and go see the wonderful things Ella has provided in the way of recipes, and all the places in the press she's gotten exposure, products, and etc.  deliciouslyella.com/philosophy/about/


 

Hello and welcome to Deliciously Ella! I’ve been writing this blog for just over two years now and love it more than I can possibly say; I hope you’ll love it too.

I started the blog as a way of dealing with a relatively rare illness, Postural Tachycardia Syndrome, which I was diagnosed with in September 2011.

The illness had a pretty devastating effect on my life – I literally couldn’t walk down the street, I slept for 16 hours a day, had never ending heart palpitations, was in chronic pain, had unbearable stomach issues, constant headaches and the list goes on – it was anything but fun! I tried healing through conventional medicine for about six months but it had little effect on my symptoms and I was still bed-ridden 95% of the time.

So I decided it was time for something new and began researching holistic, natural healing approaches, which is how I started eating like this. Overnight I took up a whole foods, plant-based diet and gave up all meat, dairy, sugar, gluten, anything processed and all chemicals and additives, which was a pretty drastic change.

I literally never ate fruit or vegetables before, my diet instead revolved around Ben and Jerry’s ice cream, Chocolate, peanut butter and jelly eaten with a spoon, pick-n-mix and lots of cereal and pasta – I was a sugar monster!

So everything you see here is part of my learning and healing process, I’m not a trained chef by any means – everything is self-taught and the result of lots of failed experiments! I also totally understand how daunting the idea of changing your diet so radically is, but it’s single-handedly the best thing I have ever done. Knowing that I’m giving my body the love and health that it needs is an incredible feeling, and even better – everything tastes so incredible now! I’d take a batch of raw brownies over candy any day!

Eating this way has allowed me to take control of my illness, stopping the constant pain, restoring my energy and giving me my life back again. It really has healed me, and just eighteen months after starting this lifestyle I’ve been able to come off all my medication and I feel so incredible, better than ever really! I’d never have believed that I could come this far simply through diet; it is just incredible – better than any drug ever. I’ve learnt more on this health adventure than I could have possibly imagined too and I really want to share all of this information with you. It’s my way of turning something negative into something really positive. If I can spread health and happiness with anyone then this is a success!

More than anything I want the blog to show how easy and delicious healthy food is – it’s so much more than bland salads and iceberg lettuce! It’s all about sumptuous desserts, delicious dips, raw treats and rainbow bowls of incredible veggies, all made with nature’s most natural ingredients. Everything here will nurture and love your body, leaving you feeling incredible. This way of eating is absolutely not about deprivation and starvation but instead it’s about embracing a positive, healthy way of life! Take a look at my food philosophy for more on all the awesome benefits of this lifestyle.

I graduated from St Andrews with a Masters in Art History in May 2013 and I’m back home in London working on a lot of awesome projects! I realeased my best-selling app earlier this year, which I’m always working on (it’s available on the iTunes store and the google play store), I’ve also just finished writing my first cookbook and it will be being published January 2015. I also teach cooking classes, host supper and brunch clubs and I’m training as a naturopathic nutritionist at the College of Naturopathic Medicine, so as this blog grows so will my knowledge of health!

Have a wonderful day,

Ella x

Contact:

Please have a look in the FAQ section for all your questions, I’ve answered all the most common questions there in detail so I hope you’ll find all the information that you need! It covers everything from measurements to equipment, plant protein, supplements, nut allergies, organic food, alcohol, loosing/gaining weight, eating healthily and socialising, starting a blog and everything in between! I’m also aiming to answer all your questions in detail throughout the lifestyle question, so if you don’t get a reply to your comment then I have taken it on board to include in a post in this section.

If you’d like to get in touch my email is ella@deliciouslyella.com – I love hearing from you all so much and am always inspired by your stories and beyond appreciative of your amazing support! I do get an incredible number of emails though, which is so amazing, but trying to reply to them all is quite tricky so if it’s a question about the way I eat or anything mentioned above then please have a look at all the sections of the blog before sending it, thank you!


Live and Learn. Learn and Live Better! ~ Mardy

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

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20 Reasons to Bother Getting an EDS Diagnosis

WHY bother to get an EDS (Ehlers-Danlos Syndrome) diagnosis? How will that help me ?

20 GOOD REASONS


1) it is genetic so you may want to know for your kids/ grandkids who may get it worse than you - and to avoid passing it on if you plan on kids

2) there are associated cardiovascular risks so you need to have an echocardiogram every 5 years - for all types of EDS esp to rule out aortic arch issues.

3) it is a great relief if you get a diagnosis because, when you understand it, it explains all your symptoms logically and you do not feel like you are crazy, depressed, anxious or have social phobias - EDS has physical reasons for all these.

4) they estimate that one in every 100 people have it but are just undiagnosed - if we all get diagnosed and the huge numbers with EDS are realised we will get more research and a possible cure.

5) There are great symptomatic management strategies for it once you know what you are dealing with - and getting a correct diagnosis is a basic right.

6) you can connect with others who have it too, which is a great relief and a good source of information

7) there are pregnancy risks such as post partum haemorrhage and miscarriages which you can be on the alert for

8) there are dental issues like poor teeth, dental crowding and periodontitis that you may want to take extra care over - EDSers often need more local anaesthetic for dental procedures for example.

9) sometimes it helps you realise what other symptoms you DO have - eg you may not know what brain fog is til you read about it as I did and it clicks - "oh yes, that is those days when I lie in bed all day and can do nothing and feel like i have a hangover for no reason"...same with heat intolerance - why you are worse in the heat, photophobia (sensitive to light) , hyperacousia (sensitive to noise) etc.

10) there are many eye issues associated with it such as near sightedness and detached retina so you may want to let your optometrist/ophthalmologist know about it.

11) It can help if you are giving up smoking to know that nicotine is a stimulant and part of the reason you feel bad is that smoking seems to mask some of your EDS symptoms so you feel better when you smoke....ditto for caffeine which is a vasoconstrictor so if you are addicted to cola drinks.....

12) some of the symptoms - brain fog , crashes, can feel like depression when they seem to hit "out of the blue " - these can be relieved by treatments such as rehydrating with electrolytes, wearing compression garments etc and maybe you do not have depression after all....

13) It can help explain seemingly unrelated issues involving multiple body systems. Also why an injury can "move" from one joint to another (e.g. you splint your wrist, and it may cause problems in the neighbouring joints - eg. thumb and elbow because all the joints are susceptible to overuse injuries.)

14) You can get appropriate management with knowledgeable healthcare providers (e.g. physios who know about hypermobility and what kinds of treatments to do/exercises to give) and learn joint protection strategies. And you can avoid unnecessary treatments and tests.

15) EDS can pre-dispose you to allergies which can lead to a risk or possiblity of anaphylaxis.

16) EDS is now being linked to MCAD - mast cell activation disorder - which for many is treatable with new protocols that bring great symptomatic relief (eg Zyrtec/Zantac Combo)

17) Another one of the symptoms is dysphagia (or difficulty swallowing) and choking on fluids, food or sometimes just your saliva- this of course can also be potentially very dangerous indeed.

18) This point is from Dr David Chorley: "Oh and I just thought of a real life example from my own medical practice (yes I'm a doctor who knows about EDS) : A significant number of EDS patients have blood clotting problems, so I have initiated my own protocol (!) of screening teenage EDS girls for Protein C+S, Anti-thrombin III, Factor V Leiden and homocysteine. Out of my 150 EDS patients I have found about 10 with defects. This is huge because if a young woman goes on Birth Control Pill with a clotting disorder she can have a stroke or myocardial infarct."

19.) Anyone with EDS should totally AVOID fluoroquinolone antibiotics which can cause damage to connective tissues like tendons and ligaments.

20) AORTIC DISSECTION IS OFTEN MISSED AND MIS-DIAGNOSED AS A (sometimes fatal) HEART ATTACK (as sadly happened with actor John Ritter).  WHY all types of EDSers need an echocardiogram at least every 5 years - to check the aortic arch
http://www.thedoctorstv.com/videolib/init/1548

(Please feel free to copy and share this widely without acknowledgement - Except for Dr David Chorley's excellent point; he would like acknowledgement to remain included please. please note tho that as it has a link to the John Ritter article if you press share it will ONLY share the John Ritter link not the full text - to share the text you need to actually copy and paste the actual text)

Someone with vasculat type added this useful comment too:

The comorbid conditions are much easier to look for/into if you have an EDS diagnosis. Doctors (especially in the ER) will take you more seriously with anything if you have an EDS diagnosis. I'm 25 and I have osteopenia, but no-one would have thought to give me a DEXA scan except my geneticist who knew about my EDS. No one would have thought that I had grade B erosion of my esophagus except that I was throwing up blood. I had to ask for a tilt table test to diagnose my POTS myself. My cardio didn't think it would matter.

An ER takes me more seriously when I have blood in my urine, knowing that I have EDS and possible vascular type. There are so many benefits to a diagnosis and unfortunately a lot of them are in how doctors themselves treat you.


Also, EDS presents certain amount of symptoms. While others are not too common with EDS. The blood in my urine can be either Vascular EDS or is caused by something else (according to my geneticist). I have an increase in CK levels - probably not due to EDS. I have slowing on my EEG and elevated pulmonary pressures, again probably not due to EDS. But without a diagnosis/geneticist/EDS specialist I would not know any of that. So now I can get other things diagnosed as well.

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

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Diagnostic Test for Many Symptoms of 'The Stuff We Have': QSART

This is an interesting test to me, in part because it's relatively simple.  It's good to have things to gauge progress when people are reversing symptoms of 'the stuff' that we (virtually) all have, which manifests in a myraid of ways and making it difficult for us to see what's really gone on until we have kept "peeling the onion layers away" to get near to the core, where the root cause / contributors are.                                                                 

In some cases, people have insurance and providers on their 'team YOU!' that would only believe someone's had improvement from doing some 'outside the box' treatment protocol by having "before and after" tests to compare -- objective data.  Versus "I'm feeling better and seem to be sweating".

Here's the link to a nice topic at the ClevelandClinic's website, from their neurological institute related to QSART testing.  And an excerpt of what is said there so YOUsers can see readily why I'm suggesting a trip on the link.   

my.clevelandclinic.org/services/neurological_institute/neuromuscular-center/diagnostics-testing/qsart


The QSART is a test that measures the autonomic nerves that control sweating. The test is useful in assessing autonomic nervous system disorders, peripheral neuropathies and some types of pain disorders. The test requires a mild electrical stimulation on the skin called iontophoresis, which allows acetylcholine, a naturally occurring chemical, to stimulate sweat glands. The QSART measures the volume of sweat produced by this stimulation.

On the Day of the Test

The technician will discuss the steps of the test and any questions you may have. You will be asked to remove your shoes and socks. The technician will wipe the skin on your leg and wrist with acetone, alcohol, then a tissue to wipe it dry. Four electrodes filled with acetylcholine are then placed on three areas of the leg and one on the wrist. The iontophoretic stimulators are turned on and sweat responses are measured. The test takes approximately 45 minutes. A mild burning discomfort may be experienced at the site of the stimulation during the test. Please wear loose clothing on the day of the test.

 


 Live and Learn. Learn and Live Better! ~ Mardy

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

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POTS, EDS, MCAS (Mast Cell Activation Syndrome) Prelim Research

Patients with postural orthostatic tachycardia syndrome (POTS) and hypermobility often describe symptoms suggestive of mast cell activation. Herein, we describe a new, unique phenotype, characterized by the co-segregation of three disorders: POTS, Ehlers Danlos syndrome (EDS) and mast cell activation syndrome (MCAS).

Participants with diagnoses of POTS and EDS were recruited from throughout North America through a patient support group and evaluated by questionnaire and supporting documentation. A formal diagnosis of POTS by a cardiologist included confirmation via tilt-table test. A formal diagnosis of EDS required assessment by a dermatologist, a Beighton score of ≥ 5/9 and a diagnostic skin biopsy. A questionnaire for MCAS was based on diagnostic criteria and validated symptoms as reported by Akin, Valent and Metcalfe (2010).

 

15 participants completed questionnaires with required documentation. All eligible participants were female. 12 of these people had formal diagnoses of POTS (80%), 9 were diagnosed with both POTS and EDS. 6 of 9 patients with both POTS and EDS had validated symptoms of a mast cell disorder (66%), suggestive of MCAS.

 

From these pilot data, it appears that a mast cell disorder may frequently co-segregate with POTS and a collagen disorder such as EDS. 

Those are the highlight paragraphs which have a button to click on and go read more . The link ...

www.jacionline.org/article/S0091-6749(14)02927-3/fulltext

 

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

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Dysautononia Information Net (DINET) dot org. POTS Info is Grate

 I found the information at this link extraordinarily good and wanted to bring it to YOUsers here:

www.dinet.org/index.php/information-resources/pots-place/pots-symptoms


 

Postural Orthostatic Tachycardia is a syndrome. As such, there is a collection of symptoms that distinguish it. The symptoms are widespread because the autonomic nervous system plays an extensive role in regulating functions throughout the body. Many of these symptoms, such as low blood pressure,* may present only after prolonged standing. Symptoms will vary from person to person. The following is a list of symptoms reported by patients. When possible, we have included the percentage of patients that research reports have experienced a given symptom.

Symptoms presumed to be related to cerebral hypoperfusion:**

  • Lightheadedness  77.6 % (Grubb, 2000)
  • Fainting or near fainting 60.5% of patients report near fainting (Grubb, 2000)
  • Generalized weakness 50% (Low et al.)


Symptoms presumed to be related to autonomic overactivity include the following:**

  • Palpitations 75% (Grubb, 2000)
  • Tremulousness 37.5% (Low, Opffer-Gehrking, Textor, Benarroch, Shen, Schondorf, Suarez & Rummans, 1995)
  • Shortness of breath 27.6 % (Grubb, 2000)
  • Chest discomfort and/or pain 24.3 % (Grubb, 2000)


Sudomotor symptoms include the following:**

  • Loss of sweating 5.3 % (Low et al.)
  • Excessive sweating 9.2 % (Robertson, 2000)
    Loss of sweating and excessive sweating are more common in patients with elevated norepinephrine levels (Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007).


Symptoms that may reflect dysautonomia:**

  • Delayed gastric emptying 23.7% of patients report gastrointestinal complaints, including bloating (Grubb et al., 1997)
  • Bloating after meals (Grubb et al., 1997)
  • Nausea 38.8% (Robertson, 2000)
  • Vomiting 8.6% (Thieben et al., 2007)
  • Abdominal pain  15.1% (Thieben et al., 2007)
  • Diarrhea 17.8% (Jacob & Biaggioni, 1999) (sometimes with alternating constipation)
  • Constipation 15.1% (Thieben et al., 2007)
  • Bladder dysfunction 9.2% (Thieben et al., 2007) (this may include Polyuria(Jacob & Biaggioni, 1999) (excessive urination)
  • Pupillary dysfunction 3.3% (Thieben et al., 2007) Pupillary dysfunction may or may not be responsible for some other reported symptoms, such as: Blurred Vision (Grubb, 2000) and Tunnel vision (Low et al.).


Generalized Complaint symptoms:**

  • Fatigue 48% (Grubb, 2000) (which can be disabling) 
  • Sleep disorders 31.6% (Low et al.) (can cause unrefreshing sleep and an increased need for sleep)
  • Headache/migraine 27.6% (Grubb, 2000)
  • Myofascial pain 15.8% (Thieben et al., 2007) (characterized by regional muscle pain accompanied by trigger points)
  • Neuropathic pain 3% (Thieben et al., 2007)


Other symptoms reported in research that are not categorized above include:

  • Dizziness (Grubb, 2000)
  • Tachycardia(Grubb, 2000)
  • Exercise intolerance (Grubb, 2000)
  • Clamminess (Grubb, 2000)
  • Anxiety (Grubb, 2000)
  • Flushing (Grubb, 2000)
  • Postprandial hypotension (Grubb, 2000) (low blood pressure after meals) 
  • Blood pooling in limbs (Grubb, 2000) (can make legs feel heavy and appear mottled and purple in color) 
  • Intolerance to heat (Grubb & Karas, 1999)
  • Feeling cold all over (Grubb & Karas, 1999)
  • Low blood pressure upon standing (Grubb, Kosinski, Boehm & Kip, 1997) (Some physicians feel orthostatic hypotension is a separate entity from POTS)
  • Cognitive impairment (Grubb et al., 1997) (may include difficulties with concentration, brain fog, memory and/or word recall)
  • Narrowing of upright pulse pressure (Jacob & Biaggioni, 1999)
  • Cold hands (Low et al.) (and often feet & nose)
  • Hypovolemia (Low et al.) (low blood volume)
  • Chills (Low et al.)
  • High blood pressure (Low et al.)
  • Hyperventilation (Low et al.)
  • Numbness or tingling sensations (Low et al.)
  • Reduced pulse pressure upon standing (Low et al.)
  • Low back pain (Mathias, 2000)
  • Aching neck and shoulders (Mathias, 2000)
  • Noise sensitivity (Stewart, 2001)
  • Light Sensitivity (Stewart, 2001)
  • Disequalibrium (Sandroni, Opfer-Gehrking, McPhee & Low, 1999)


The above are symptoms reported by POTS researchers. Other symptoms sometimes reported by POTS patients include:

  • Arrhythmias (irregular heart beats)
  • Chemical sensitivities (May have multiple chemical sensitivity and can be very sensitive to medications - may only need small doses)
  • Easily over-stimulated 
  • Feeling full quickly
  • Feeling "wired"
  • Food allergies/sensitivities (some foods seem to make symptoms worse)
  • Hyperreflexia
  • Irregular menstrual cycles
  • Loss of appetite
  • Loss of sex drive
  • Muscle aches and/or joint pains
  • Swollen nodules/lymph nodes
  • Polydipsia (excessive thirst)
  • Weight loss or gain
  • Feeling detached from surroundings
  • Restless leg syndrome

POTS symptoms can vary from day to day. They tend to multiply and become exaggerated upon upright posture. Blood flow and blood pressure regulation are also abnormal while supine or sitting, but these abnormalities may not be as apparent and may require orthostatic stress to become evident (Stewart & Erickson, 2002). Some patients do report symptoms occurring while sitting or lying down. Heat, exercise and eating can exacerbate symptoms. Women sometimes report an increase in symptoms around menstruation.

If you are suffering from some of the above symptoms, you need to seek professional help. Please do not attempt self-diagnosis.

*Some of the above symptoms are specifically related to orthostatic hypotension, traditionally defined as an excessive fall in BP (typically > 20/10 mm Hg) on assuming the upright posture. Not all patients will experience a drop in blood pressure upon standing. Some physicians define orthostatic hypotension as a separate entity from POTS.

** The hypothesized origin of symptoms and their frequency came from the "Postural Orthostatic Tachycardia Syndrome: The Mayo Clinic Experience" by Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007. 

PLEASE GO TO THE LINK TO SEE THE REFERENCE SECTION and naturally, they can update the information at this topic.  I have provided the information here at Lumigrate so YOUsers can see why I suggest this website as a resource not just for this topic -- this is how wonderfully done the topics are!  Again: www.dinet.org/index.php/information-resources/pots-place/pots-symptoms 
 
Live and learn. Learn and live better! ~ Mardy

 

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

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Mardy Ross
Title: LumiGRATE Poster - Top of the Totem Pole
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In the Fringes Blogsite - Very Nice Information, Well Written

Someone in one of Contessa Courtney's Facebook groups focusing on EDS / Ehlers-Danlos Syndrome had posted this link as a resource on a thread that someone started regarding what happens with hips and other body parts during sexual activity, or 'intimacy' as the groupmember had delicately called it.  That was was a good conversation starter, and I was glad I saw it.  Sex is an "occupation" just like anything that occupies time, as I learned as an occupational therapy student in the mid 1990s (in my mid 30s). As such, we are to go forth and assist people as occupational therapists with all functional tasks and occupations of time, and that would include sexual. And in my career it really never came up.  No pun intended on that, either.

I worked from 1996 to 2008 doing occupational therapy work formally, and I had the least experience in acute rehabilitation where you'd normally see that being brought up, or in outpatient when those patients progress to being home and continuing at the outpatient level.  I did have about 10 months part-time experience with an experienced, older OTR who mentored me a lot about 'neuro' OT at the outpatient level.  I don't recall sex ever coming up.  

For what it's worth, my contribution to the comment thread was to have people check out the EDS / Ehlers-Danlos Syndrome conference videos from 2014, because a PT presented about the new 'gym' that they had with the new EDS / Ehlers-Danlos Syndrome hub on the east coast of the United States that is "branding itself" as focused on EDS / Ehlers-Danlos Syndrome -- and then "also serving autism, fibromyalgia, MS, Parkinsons, (and the overlapping conditions I referred to at the top of this initial thread/topic).

They were "all about" stabilizing joints and the trunk / "core stabilization", plus had really cool fancy hi tech stuff to have people engaging in that plus had the brain getting more connected.  Equipment that, in the past, I asked for or told clinics I'd ideally love to have for the type of work I was seeing helping in my low-tech ways. 

I also mentioned that I'd gotten into in-line skating ("Rollerblading") at age 31, and that had helped my hip muscles get stabilized, so my hips stopped going out of joint if I had them flexed and abducted a bit. Bending over to put on shoes, or pick something up from the floor when seated was often causing my hips to 'start to go out of joint', or so it felt. 

Ultimately, I wish people ALSO not just treat the symptoms but continue to look for the underlying causes and solutions that might be known to some and not others.  I am, and I am bringing things to the pages of Lumigrate that I believe might be the right thing for people's next step in learning, making opinions, and becoming proactive if they decide something is right for them. 

Live and learn. Learn and live better! ~ Mardy

inthefringes.wordpress.com/eds-2/

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

Mardy Ross's picture
Mardy Ross
Title: LumiGRATE Poster - Top of the Totem Pole
Joined: Feb 16 2009
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User offline. Last seen 11 hours 41 min ago.
Hyperextending Knees Affects Your Spine -- But WHY Hyperextend?

I saw the article shared, below, in Contessa Courtney's group today and was working on this topic, overhauling it and improving it, thanks to supporters who wanted to see me working on it for their and others' benefit in the future. 

I had edited in the photo where I'd been so blown away after learning that EDS / Ehlers-Danlos Syndrome and then looked at the cover photo on my Facebook and could not believe nobody had ever said 'Mardy, you've got EDS / Ehlers-Danlos Syndrome maybe, looking at that photo'. 

      

          Me, Mardy Ross, 2009 (May, I believe) - Corona Arch area, Utah

I guess it's as well, I saw a photo of a woman's daughter -- someone who had met me in the live world in 2012, and we'd had a pleasant conversation. She ended up having a fit what I'd shared privately and diplomatically in the interest of helping her identify something her daughter may have, and she ended up unfriending me and more.  I'd even said how the girl could be a model and many models have..... UGH.

Poor kids, with parents with those types of behaviors.  And therein is a hint, by the way -- in my opinon.  Behavioral issues seem to be part of the constellation of symptoms you see across the family members of those who have Ehlers-Danlos Syndrome / EDS.  "Don't judge me..." for saying that.  And I'm not "judging" them, I just am saying to raise awareness.

So please read this one.  Go to the website spine health dot com of course, is my highest recommendation. But keep in mind they're maybe not getting to the underlying reason, and then the reason under that, like I have pointed out here.

I added bolding belwo to make things "pop" for the YOUsers of Lumigrate.

www.spine-health.com/blog/how-hyperextending-your-knees-affects-your-spine


How Hyperextending Your Knees Affects Your Spine

By Jonathan FitzGordon - Updated October 2015
 

The human spine degenerates—such is the nature of being alive. For many different reasons, from the moment we are born we are basically falling apart.

Aging is the most natural of our degenerative processes. As life goes on, our bones slowly dry up, becoming brittle to varying degrees.

Hyperextending Your Knees
Hyperflexing your knees may damage your spine. See Good Posture Helps Reduce Back Pain

Injuries and their compensations, illnesses, genetics, and other factors also affect how the spine holds up through life. These are all things that, for the most part, are outside of our conscious control. Posture is something within our control, and hyperextending the knees is one of the most common postural mistakes. My take is that poor posture is responsible for a good deal of spinal degeneration—and it tends toward a particularly insidious degeneration, because the subtle wear and tear from years—a lifetime—of bad posture and movement patterns often catch up to us later in life.

In an attempt to simplify the workings of a complex body, I like to say that the bones hold you up, the muscles move you, and the nerves tell the muscles to move the bones. In holding you up, the bones bear and transfer weight by stacking one directly on top of another. A well-aligned skeleton allows the muscles to work as little as possible to hold you up, which frees those same muscles to function as they were designed.

The movement of almost any joint in the body affects other joints both near and far (there is only one bone in the entire body, the hyoid, that doesn’t affect other joints with its movement). The optimal functioning of the spine requires all of the joints of the body to be working harmoniously together. This is easier said than done.

Hyperextension is the movement of a joint past its normal range of motion. In the case of the knees, this means that the shin bones are moved backward into an obtuse angle with the foot and ankle.

Ankle Alignment

When standing, the shin should be at a right angle to the foot. See Identifying Incorrect Posture

The shin, when standing, would like to be at a right angle to the foot. If weight is going to pass down through the spine to the pelvis, legs, and feet successfully, the femur bone needs to be situated directly above the tibia so that the tibia can be directly on top of the ankle (talus bone). A hyperextended knee joint moves these bones backward, diminishing the possibility of successful weight transfer. The alignment of the spine is highly dependent on the position of the pelvis, and it is very difficult to align the pelvis properly if the knees are hyperextended.

When the knees hyperextend the tibia, fibula, and femur move backward at the knee and the femur moves forward at the top of the thigh. This forward movement of the thigh pulls the pelvis with it, often, but not always, tucking it under. The spine is pulled out of alignment accordingly and the result is often a very subtle compression at the back of both the lumbar and cervical spine.

This is the insidiousness mentioned above. The hyperextension of the knees—or the misalignment of any joint, for that matter—does not have to be excessive; years and years of the most subtle misalignment will add up over time to compromise the whole skeleton, but especially the spine.

Spend some time today feeling your own posture and looking at people’s knees when they stand and walk.

Learn more:  PLEASE GO TO THE LINK AND INTERACT WITH THE TOPIC AND THER OVERALL WEBSITE, it's a cool one!

www.spine-health.com/blog/how-hyperextending-your-knees-affects-your-spine



My input at this point is this is a good basic article, above, from a point of view that is not taking into considering what is going on in the nervous system of a person who is hyperextending.  The nervous system needs to fire correctly to have all the things in balance for contracting, relaxing, and maintaining.  Winged scapula are a feature seen in people with EDS / Ehlers-Danlos Syndrome.  Winged scapula are a symptom of sensory integreation disorder, more recently called sensory processing problem / disorder. 

My mother screened all third graders in my elementary for over a decade and all but one, so about 999 out of 1,000, had some or more evidence of impairment of the neurological system that would cause sensory integration symptoms. 

That student is someone I knew, and I've intermittently checked in with as she also was learning about many things to do with living a good life.  The one totally unique thing her family was doing compared to other families was living a lifestyle that was taught by Grange and was with far more wholesome, unadulterated foods and drinks than anyone else in our area in those days.  Hence that helped me more fully appreciate that effect of diet and looking for the traditional roots way of eating and drinking for wellness. 

Much like the Westin A. Price Foundation teaches.  That's a great Search word for the Lumigrate Search bar if you're so inclined... I've provided some topics and links to get people started of course. 

Live and learn.  Learn and live better! ~~ Mardy

<THANK YOU, SO VERY MUCH, TO THE GENEROUS SUPPORTER WHO HAS GIVEN SOMETHING TO ME FOR THIS DAY'S WORK in order to EDIT and IMPROVE the  TOPIC FOR ALL READING IN THE FUTURE! ~ Mardy>

The PayPal link made it super easy for them to become involved.  www.paypal.me/MardyRoss

You can contact me at area code 970 prefix 462 then 8662 as well (and I text).  I like to keep it simple. Of course I'm on Facebook

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

Mardy Ross's picture
Mardy Ross
Title: LumiGRATE Poster - Top of the Totem Pole
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Veterinary and Human Medicine Collaborations Leading the Way

I was thankful to see someone who originally I knew as a 'biofilm focused activist' on Facebook and the overall Internet and live world sharing about this free webinar about understanding bartonella. I'm also thankful to see that as of this additional comment, 7,840 reads of this topic have occurred.  I like to be contributing to the fund of knowledge out there for people, and Lumigrate's content is totally free.  You can't even sign up at this time for newsletter or any of those previously-working functions. 

Recently the mainstream and the non mainstream health-focused people I've kept tabs on appeared to have gotten very focused on 'chronic Lyme disease'.  I began covering Lyme on Lumigrate in the forums when I saw this occurring, I believe it was 2014 -- perhaps it was 2013.  As I went along learning in this 'rabbit hole' about health, I started being more concerned about bartonella being overlooked and being called a 'co-infection' that often is present if someone has Lyme.  It is referred to as "Lyme and Company" by some, myself included at times. 

Ultimately, as a health information tutor / teacher / navigator assistant, or formerly as an occupational therapist in mainstream, allopathic medical (1994 to 2008 this was my focus in education and practical application as a worker in the field before starting Lumigrate full time with my efforts in March 2008, the website launching a year later), the greatest challenge for educating people is their personality issues which cause a multitude of limitations.  And I was seeing that as having a part to play from bartonella.  Naturally, nutrition always would be a factor with people. 

I'd seen someone in 2016 I'd been working with (who hadn't done any testings of their bodily fluids and was just operating off of symptoms) being fine one minute and go into deranged monkey mind and having their mind take them away to an undesirable-for-me place after eating Thanksgiving dinner.  On a previous year at Thanksgiving weekend I'd been able to show the parents of a child who life-long had been in the mainstream system having behaviors of significance that had them in therapies and special schools when older that the meltdowns occurred always just after eating. NOT saying these people certainly had bartonella if they were properly tested for it being in them, but I was definitely seeing a constellation of information that tied together.  And MOST PEOPLE studying and teaching or providing assistance professionally to people seemed to be missing some of the 'dots', and focusing only on some of the 'dots'.

In 2015 I was connected to O'Rio Grande, the dog I now own as of fall of this year.  He basically has lifelong had similar symptoms to many of mine, and congruent on a lifeline with relative age.  This fascinated me. 

Photo, below -- O'Rio at the doorway of his former home after two years of rehabilitation (of the home and of the dog).  I/we started with diet.  Water.  Food.  Quality.  And we cleaned, and changed products used inside and outside, and on the dog and on the people who touch the dog.  This does not snow his hypermobility, but typical of his father's breed (border collie), he's with interesting ways of bending.  He'd very long bodied and long limbed -- sounding familiar to human "Ehlers-Danlos Syndrome" or Marfans? Around the time of this photo, change was in the air for me as Mardy PopIns and for the home and owners, and I offered, and they understood the difficulties of avoiding mercury as he and I share that 'element of sensitivity', and gratefully allowed me to take him with me from there and into the present and future, as long as our paths will be intertwined.   

 

And Thanksgiving 2009 I'd get a young cat which was essentially the result of a cat hoarding situation where I could provide foster care, who everyone always immediately said 'no, that's your cat for good, Mardy.'  I'd eventually come to realize this little 10# teacher is supposed to be teaching me something, that's how the strange circumstances all occurred that year so that I'd end up with her.

Photo, below -- she was hypermobile and would often lie in a way to extend her hind legs behind her, or hang out on the back of the recliner as in the photo, which gave her deep pressure in her trunk / core (which is significant 'clue' when thinking about sensory processing, POTS, and so on.  Think of the 'squeeze machine' that Dr Temple Grandin invented just prior to her college years from seeing her aunt's cattle ranch's machine to hold cattle for vaccination and perceiving how it calmed them.)

           

She had similar symptoms to mine, too, at those ages.  I'd immediately gone to addressing diet with her, and noticed that her symptoms often came on and seizure-like symptoms would occur when I got her onto the 'ideal diet'.  I'd be baffled and desperate as she went 'totally off the charts crazy' in winter 2012, and the veterinary office I finally found who knew what she had but couldn't see her for 10 days suggested a remote-working professional who was very adept at nutrition, that was her initial profession -- health food industry.  She had amazing abilities for reading situations with animals and their owners and former owners and situations and expanded my mind leaps and bounds on what is possible with our minds. 

And I'd learn that the cat and I were seeming to her to be very similar.  She'd be euthanized in spring of 2013, before I found the solutions to help her, and then just two years later, after I'd learned more and with fierce determinism to get to the truth about what's hurting 'the innocents' and the adult humans who have the ability to learn and change on their own independently (therefore not part of the innocents).  And then things would start shifting to where I went into the Mardy PopIns era, beginning Christmas 2014 -- coming up on three years.  And at house #3 as Mardy PopIns, I'd connect with O'Rio -- the canine part of this story of similarities. 

I believe what has caused us to be ill -- or well if an animal or person is so fortunate to fall into that rare category these days -- is very complex, has many components and beyond the obvious with nutrition and the easier to understand science of chemistry and nutrients in the body is the harder to understand science of energy of elements in chemicals, coming from foods, our bodies, many things in our modern world and from the Earth itself. 

I believe collaborations between human and veterinary medicine are leading the way, and I'm so pleased to have been guided to be part of the process with that, via the cat and the dog who taught or teach me still so much.  I see how it's just easier and more fun to see it through cats and dogs! And as a person who grew up with cats and dogs -- and a commercial kenned my parents operated from before my birth until I was school-age, and knowing what the dogs, cats and people were consuming in those days based on what was believed was good nutrition -- I see how we got so messed up. 

These speakers put together very good presentations.  They are dry as a bone in terms of their speaking personalities, however.  So perhaps think of this as being in college -- you really need to take this class and the professor is a good one but not fun and interesting.  But the information you'll learn might immediately make a difference in your life. 

I suggest going to 57 mintues or just prior to that and starting there for a while to see why I'm so impressed with this webinar, and then back up and start at the start or start another time from the start. 


Free Webinar: Understanding Bartonella

Webinar recorded July 10, 2015

Bartonella infections are increasingly implicated in complex chronic disease syndromes, yet are extremely difficult to diagnose accurately. The purpose of this webinar is to raise awareness about Bartonella; its prevention, diagnosis and treatment. Medical, veterinary and public health professionals will benefit from attending this webinar.

Speakers include subject matter experts Edward Breitschwerdt, DVM and B. Robert Mozayeni, MD.  Please note that the content is highly technical and designed for an audience of medical, veterinary and public health professionals.

Learning objectives include the ability to:

  • Describe the epidemiology of Bartonella;
  • Identify populations most at risk for Bartonella infection; and
  • Explain the process for accurate and timely diagnosis of and treatment considerations for Bartonella

Our mission is to educate as many people as possible about the increasing medical importance of Bartonella.  As an advocate for One Health, please share this free webinar link with others who may be interested.

onehealth logo_final a jpg (1)

 

Many thanks to the One Health Commission for sponsoring our Bartonella webinar!


www.galaxydx.com/web/2015/webinar-understanding-bartonella/  -- PLEASE TAKE THE LINK TO GALAXY DX dot com to see this at their website, I've provided this 'nutshell' so you can see WHY I am ENCOURAGING taking the time, making the effort, using the energy (and spending no money since it's free -- and it is truly free, you don't have to sign up and give your information or anything). 


Having shared this on my Facebook page, and planning to share it into a group for further discussion, possibly, I'm providing some highlights of the discussion.  I'd simply set up the link with the same suggestion I put above here, to start at 57 minutes and how this is about collaboration of the two medical realms AND I mentioned the psychiatric aspect that's focused on at 57 minutes and 60 minutes being where dysautonomia and POTS and so on are brought into the discussion. 


Might want to look at the nutrients that are needed to have healthy collagen, vessels & healthy adrenal function. They also have properties that are not only anti bacterial, but also anti fungal and anti parasitic . This essential nutrient, when unbound, causes high histamine, which is found in mental instability and also in those when raging .

Can you guess what nutrient is found to be unbound (meaning low bioavailable) in people that not only have autoimmune disorders but who are also walking Petri dishes? It's copper. 

And when there is an imbalance in copper, you will also have an imbalance in iron --  hence the red blood cell involvement ... For those of you with tick-borne infections, EDS, mast cell activation disorder (MCAD) & POTS, its NOT the bugs --  it's the deficiencies and  high unbound essential nutrients in your body that allowed the bugs to have a happy home.

TO BE CONTINUED -- please check back! 

Live and learn. Learn and live better! ~~ Mardy

__________________

Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!

This forum is provided to allow members of Lumigrate to share information and ideas. Any recommendations made by forum members regarding medical treatments, medications, or procedures are not endorsed by Lumigrate or practitioners who serve as Lumigrate's medical experts.

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