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/ [43]

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 [44]

(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/ [45]

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

floxiehope.com/my-story/ [46]

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 [51]

Published on Oct 21, 2014

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 [54]

 "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 [56]

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.

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

 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/ [61]

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

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/ [63]

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 [64] and the google play store [65]), 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 [66], 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 [67] 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 [68] – 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!

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 [70]

(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.

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 [72]

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

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 [74]

 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 [76]

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 [77] hypoperfusion [78]:**

• 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 [76] 

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/ [80]

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 [82]

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 [82]

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 [1]

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

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

www.galaxydx.com/web/2015/webinar-understanding-bartonella/ [86]  -- 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