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Letters from Our Readers – Comments and Suggestions 8-15-07

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A Powerful Quote

I recently read this quote from Dorothea Lange and wanted to share it because it seems relevant to others with ME-CFS. She had polio as a child (a disease with symptoms similar to ME-CFS; some researchers believe that ME-CFS may actually be a variation of polio), but managed to recover and became a very important photographer – probably best known for her photographs of migrant workers. This quote acknowledges the profound impact that invalidism has on one’s life, but also offers hope that it need not be all negative. – Lila

Dorothea Lange quote:

I was physically disabled, and no one who hasn’t lived the life of a semi-cripple knows how much that means. I think it perhaps was the most important thing that happened to me, and formed me, guided me, instructed me, helped me, and humiliated me – all of those things at once. I have never gotten over it, and I am aware of the force and power of it.

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Naturopath Found Lyme Disease

I have struggled with fatigue for over 10 years and I am only 28. It has become debilitating these past three years. I had been from doctor to doctor, and many health care providers. It wasn’t until just a little over two months ago that I had a drop of blood from my finger looked at by a naturopath, and he said it was one of the worst cases of Lyme disease he had ever seen… I had all of the symptoms for years and years, and finally discovered I have Lyme.

[Under a microscope] I saw the spirochetes swimming around the red blood cells. I am currently waiting to see what other bacteria are in me… I had been diagnosed with CFS/FM and only just now found out I have Lyme disease, so please send out this message to others. – Anon

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More Thoughts and Information on Lyme Disease

Thank you for posting [“Lyme Disease & Chronic Fatigue Syndrome – A Patient-Researcher’s Perspective.”] It was very detailed and in-depth about almost all aspects of Lyme disease and co-infections. I wanted to add, from a USA perspective, that there are two other Lyme diagnostic labs in the USA:

n MD Labs in New Jersey [Medical Diagnostic Laboratories, LLC, http://www.mdlab.com/html/testing/available_tests.html#tick] and

n Stony Brook Lab in New York [the State University of New York-Stony Brook Laboratory for the Diagnosis of Tick Borne Diseases http://pathology.path.sunysb.edu/labs/ticklab/TICKLAB.htm]

Adding onto the list of over 300 other illnesses mimicking Lyme disease are: Parkinson’s, multiple sclerosis, ALS/Lou Gehrig’s disease, Alzheimer’s/dementia, Fibromyalgia, Chronic Fatigue Syndrome, almost all mental illnesses, Bell’s palsy, irritable bowel/bladder; GERD, and the list goes on.

…I went to a talk by Dr. Scott Taylor, DVM, and he has an in-depth article that is shown in one of the links in this article. [“Lyme Disease (Borreliosis). A Plague of Ignorance Regarding the Ignorance of a Plague.”] He is the reason I chose to have a western blot igm/igg blood test taken. Both were positive for Lyme disease, meeting CDC requirements. I’m a statistic now! Again, thanks for publishing this in-depth article. Many of our Lyme Disease Network (http://www.lymenet.org) members are from UK/England – over 100 folks anyway. – Betty

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Two High-Priority Patient Needs

I want to say how grateful we all are for the resources you provide for us. When I get calls from people who are looking for help, Immunesupport.com is always recommended as a resource to stay on top of the latest news and treatment help.

I want also to express my concern for those who are caught between a rock and a hard place with no appropriate doctor to help them with severe pain issues and the many, many other issues ME/CFS/FMS people deal with. Many have no financial resources at all and can’t try a lot of supplements. What I would like to see is a resource designed specifically for them – a place to come to find out the basics. For example, “How do I get help for a migraine?” is a question I see and hear a lot. Of course, pain issues are complicated and pain specialists frequently don’t have a clue. It’s hard to believe at this point in time, but it’s true.

And then getting doctors to believe that CFS and FMS are real disorders puts patients in a position of not being able to get the help they need. If the extrapolation is correct and about 80% of people with ME-CFS aren’t even diagnosed, that doesn’t say much about the education available for doctors. I’d like to see a package put together for patients to be able to take to doctors and put in their hands.

If their health care provider sees that the information is validated by the CDC, then they just might read it. – Nancy

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One thought on “Letters from Our Readers – Comments and Suggestions 8-15-07”

  1. smr7sadie says:

    There are 2 Canadian Documents being distributed to Canadian doctors at present by an advocacy group, National ME/FM Action Network.You may find these documents at http://www.mefmaction.net – under the “patient” menu – choose “Consensus Documents”. These documents provide clinical case definitions for medical practitioners and given that American doctors were involved to some extent in these documents, perhaps you may persuade your doctor to read it.

    I have been very fortunate in that my family physician is very supportive even to the extent of co-operating with an American physician. I consulted with an American doctor at a Fibromyalgia and Fatigue Center and have been following their program for 7 months during which I believe that my quailty of life has improved significantly.

    Thanks to ProHealth for access to their newsletters which have helped and continue to help keep me up to date.

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