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Letters Sharing Insights and Needs 10-18-06

  [ 240 votes ]   [ Discuss This Article ] • October 18, 2006

LA Lyme sufferers misdiagnosed with CFS for 12 years
I have been following your letters and catalogs for several years, ever since my son was diagnosed with CFS in 1994 after having been ill since 1992. He was 12 years old at the time he first became ill. Most of his initial symptoms have subsided but he still has a rash that began on his neck and has now spread to his face and back. I also have symptoms of problems (swollen glands and tinnitus). On a hunch I have been tested for Lyme Disease, and he is being tested now. My tests came back positive and I have no doubt his will as well. I attend a Lyme Disease meeting in Los Angeles County and find that most longtime attendees believe that CFIDS, Fibromyalgia and other autoimmune diesease are different manifestations of Lyme Disease. My question to [other readers] is, have you ever been tested by a Lyme Disease expert? – Anonymous

One man’s suggestion
I have been suffering with CFS for 10 years or better. It would be silly to go on about all the doctors who want to say your nerves are bad and put you on antidepressants and or other "nerve" treatment plans because they don't recognize our illness as real. However, I would like to share a bit of encouragement to all of you to learn more about testosterone. I use a gel-like cream that you rub on daily, and why yes, I may have gained a little bit of weight - but I feel like I have restored some vitality in my life. Am I cured? No, but I do unequivocally feel much better. Stress will kill you; lack of sleep as well, but trust me this stuff has helped me beyond belief. If you are willing to open your mind to a new treatment, and can find a great doctor to work with you, try it! - Robin

The need for CFS/FM-aware physical or exercise therapists
I seem to be stuck at a point where if I do too much physically I experience a relapse response after just 5 minutes standing at the sink washing dishes… If I could get [the proper] therapy I know I could extend this exertion time perhaps significantly. However, I am limited to a specific chain of physical therapy centers, and by their own admission they are geared up for sports or car accident injuries or stroke victims. After my most recent visit, the manager told me that nobody there knew what CFS or FMS were, much less how to approach them properly. – A long-time reader

Success stories for patients with recurring infections?
I have read several success stories regarding treatment for CFIDS on this site, but none of them have mentioned whether or not the patients had severe immune dysfunction. I've had CFIDS for 18 years with chronic infections (disabled for the last three) and it would be extremely encouraging to read about people in my situation who have managed to recover their health. I'd love to hear about patients who have been successfully treated for immune dysfunction in CFIDS and recurring infections such as HHV-6, mycoplasma pneumonia, Epstein Barr, etc. It seems like while you can treat the individual infections, it is very difficult to correct the underlying problem, which is of course why drugs like AmpligenR are so invaluable.* I'm sure that others would be interested as well, since they often post on the [] message boards. – Lila

Note: See our recent Pharmaceutical Drug News item on this potential CFS drug’s progress through the clinical trial process: “Ampligen® Takes Another Step Toward Market,” at

Articles that should be “must reading”
I read every article [including the following, appearing in the October 4 and current issues of the CFS newsletter] and found them to be extremely helpful and informative. “One Man's Meat” is something I think way too many people don't understand. I have read posts on many medical bulletin boards where people are talking about all kinds of meds, especially for pain and mental health. They seem to be dominated by a few people who took a drug and found it to not help them or have adverse side effects or withdrawals. (Half the time because they never told their doctor and went off cold turkey, then blame the drug.) Your "Know Your Prescription Drugs” goes hand in hand with that, making it clear how important it is to be an educated consumer about the meds we take and how to go about gathering that information. Also, as someone who has recently been doing a lot of studying of the brain, I found your article on “The Placebo Effect” to be very interesting, informative, and educational. As someone who has dealt with chronic pain and talked to many others in the same situation, I know many people have trouble finding good pain management doctors and clinics. That article was very helpful with references to look to for help. Thank you for these articles and I know they are going to help a lot of people. I wish this newsletter was must reading for everyone. - Karen

On the Name Change – Us vs. those who wish to “discredit” CFS
Regarding the CFS “name change” issue, I would be interested to hear how medical specialists for ME/CFS view this concern. My own specialist is the world renowned Dr. Bruce Carruthers.* And I seem to remember reading an article by him where he said, while agreeing that the label CFS is trivial sounding when the illness is anything but trivial, he was of the opinion (at that time, anyway) that we needed a clearer idea that pointed to a “proper” naming of the illness… Even in the UK, where CFS is called something which sounds serious, they are still plagued by the “deconstructionist movement,” led undoubtedly by insurance companies and their underwriters to discredit the illness all together. I don't know that successfully changing the name here… would even put a dent in their armor. However, having said that, I would so prefer to have a decent-sounding name to give to those who ask or need to know. And I do like the idea of using Dr. Ramsay's* name rather than one symptom - so annoying. My vote (at this time) is for Ramsay's Syndrome – Beverly *

Bruce Carruthers, MD, was lead author of the Canadian Consensus article “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Case Definition, Diagnostic and Treatment Protocols,” which was published in Journal of Chronic Fatigue Syndrome 2003, Vol. 11, #1: pp. 7-115. Just recently, in August 2006, he published a perspective on the various definitions of ME/CFS and the process of discovering its cause (abstracted at )
Dr. Melvin Ramsay, a physician who practiced in the Uk, first defined and was the recognized authority on CFS/ME from 1955 until his death in 1990.

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