I was fortunate to connect with a very experienced and successful Lyme advocate in the United States who knows the ropes from the inside of the Lyme community. Currently beginning therapy using bee stings, she has been fighting the fights one has to go through with insurance and disability and the providers, and has regained her abilities to communicate and she's just a 'ball of fire' from St. Louis, "the middle" of the United States.
Recently she suggested this website, CFS/ME (+ Lyme) Recovery Path --
You'll see it has information about several of the people you'll see in the documentary that has "lit the fire" under the Lyme issue and made the public and providers aware in massive numbers, which is then driving a lot of progress over the last handfull of years or so.
They also have a recipe for making fermented cabbage (aka saurkraut). And this is all done with fun photos, lots of humor and positivity. I hope you go AND find it as relevant and enjoyable as I have. Here's the link:
http://www.cfsrecoverypath.com/about-me/
You'll see the tabs you have to choose from are:
Home, Start Here, The 7 Steps, Tools, Treatments, Techniques, Lyme, About me
The Start Here begins with stating it is possible to get better, don't let anyone tell you otherwise. "So let's get started." You've many 'noticed' that I said the advocate woman, above, regained her cognitive abilities. This is one of the challenges of providing content on the Internet (or any method): Depending on where someone is in the disease process, their brains are varying in terms of what they can handle.
Lumigrate's intended for people to have advocates helping them if they cannot do the mental work of a topic, and to be something that might be of value to their providers if they were to connect the provider up with the information. So unfortunately our content is sometimes too difficult for people to use indepedently. Joe at the CFS/ME + Lyme Recovery Path has things geared more simply, things are easy to read, short paragraphs, LIGHT and bright and positive.
After the 'let's get started', they/Joe then address the load of information at the website and where to start. Joe recommends people start by reading the First Seven Steps to Healing (on a link there), and then he suggests the Facebook group, subscribing, and then coming back to learn about specific Tools, Treatments, Techniques. So he's spelling it out for people very clearly.
Obviously, I suggest you GO to the above link, it's to the About Me, which I want to provide here, below, so YOUsers can see what he's About! I noticed that Joe is collaborative, he's 'sharing the pie', by suggesting others who reinforce what he provides. That's one thing I've 'noticed' about providers and look at when I'm sizing them up: Are they collaborative, or is it a one way street to their website and they don't want you to think there's anyone else. Coming from a place of 'abundance' versus 'lack thereof' is something all people do, so I suggest finding those who are abundant, and generous.
You'll see he has come to the US to work with Dr Klinghardt and his clinic, and clearly that is taking commitment, energy, money, and it is wonderful to see someone documenting how that went for them. I found Dr Klinghardt's videos, some of which I've transcribed parts of, given written overviews of with the times he discusses so people can find the information, to be very generous. He's one of the providers in Under Our Skin, and in YouTube videos of presentations is shown teaching providers (and others who come to the conference) how to do what he does. The videos are there for all to learn from. Supply and Demand and competition can make providers with operating costs become territorial and proprietary, 'holding their cards to their chests' so to speak.
One thing I would like to mention: While there is information provided in stories and content about ticks biting, that is only one of the ways which people get Lyme/borrelia. That's a major issue with people seeing information is thinking that it doesn't apply to them because they've not had a tick incident. I've covered that in topics at Lumigrate, and try to weave that in frequently.
The number of people who are unaware that these types of 'bugs' are contributing the symptoms they're experiencing is massive. And it wasn't until 2010 that I was learning this type of information, which was the benefit of having the original plans for Lumigrate's content provider team fall apart with the falling apart of the local clinic team: I struck out and networked on Facebook and found MD Marc Spurlock to collaborate with providing content at Lumigrate and sharing things on Facebook, etc. When he first told me about it, and connected me with ITC Pharmacy, in my home state of Colorado, I asked the co-president and founder about Colorado and Lyme and I got the impression they weren't aware of the other ways besides tick bite that people get Lyme/ borrelia.
They were pharmacists, preparing and purchasing products to sell to consumers with patient education about that, and not diagnosticians and so I'm not being critical, I'm intending to show how much growthin is happening on the topic of Lyme/borrelia as it relates to CFS/FMS/etceteras.
Because it's ultimately, as you see in other topics here, the progressive, neurodegenerative disorders -- MS, ALS, Alzheimers, Parkinsons, Lewy body, lupus and on and on, which research is increasingly being connected to borrelia AND other things, such as foods consumed that have glyphosate ("Roundup" is the brand name people usually know), and in combination with aluminum that gets into the system in various ways. So even the Lyme providers are continuing to learn these many new things as they are able to be exposed to the information, and it's just as we have in the Load Theory topic by Dr Spurlock here at Lumigrate in the forums: many things adding up.
So, about Joe (and then please GO to the link and see his photo, look around the website if this has piqued your interest.)
About Me
Welcome. My name is Joe and I’m from Australia. I’m a writer, aspiring social entrepreneur and slightly above average table tennis player.
Getting a Diagnosis
I was diagnosed with Chronic Fatigue Syndrome (CFS/ME) in 2003 and added Lyme to the mix in 2012. I’ve been evolving ever since. These conditions have been my greatest teachers and fiercest foes. And after 6 years of just getting by I made a commitment in August 2009 to do whatever it takes to get better. Here’s how I arrived at my diagnoses:
- Extensive testing to rule out other conditions and matching my symptoms to the Canadian Clinical Criteria originally led to my diagnosis of CFS/ME. (2003)
- A PCR test from Red Labs & a clinical interpretation of various immune markers resulted in a new diagnosis of Lyme. (2012)
- A strong response to antibiotics further indicated Lyme as well as a secondary diagnosis based on symptom picture and Autonomic Response Testing. (2012)
Getting the Right Treatment
So far, So good. I have experimented with many different treatment approaches around the world and made great improvements along the way but still fluctuate between 65-85% wellness levels. So there is still room for improvement . Every day, week, month and year is a new lesson. I have to agree with the words of Herbalist Stephen Buhner “There is nothing like a good chronic disease to raise our awareness.” Practitioners I have worked with include:
- Dr. Braham Rabinov (Integrative Medicine) & Dr. Don Lewis (CFS/ME Specialist) in Melbourne.
- Niki Gratrix (Naturopathic CFS/ME Specialist) in the UK/US.
- Dr. Kenny De Meir Leir (CFS/ME Specialist & LLMD) in Belgium
- Various different Panchakarmas and consultations with Ayurvedic Doctors in India.
- Katie Dahlgren (N.D) & Dietrich Klinghardt (M.D) both alternative Lyme specialists in the US.
In sharing what I have found to be the leading Tools, Treatments & Techniques in recovering from CFS/ME & Lyme I hope to empower you to walk your own path of recovery, to inspire you to believe its possible, to arm you with the knowledge it takes and hopefully to make you smile along the way.
You can contact me at joe@cfsrecoverypath.com.
Onwards & Upwards!
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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!
