July 17, 2007
I Need to Find a New Doctor
Q: Help! I may need to move to Dayton, Ohio. Who can treat my CFS there? – April
A: There are several places you can check when looking for a doctor who treats CFS:
n Co-Cure has a “Good Doctors List” organized by country and state.
n Support groups are usually good resources when looking for a doctor recommendation. You can get contact information from ImmuneSupport.com’s Support Group Directory.
n And you can ask for recommendations on the ImmuneSupport.com Message Board.
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Want To Know More About Martha Kilcoyne's Protocol
Q: (We received two questions about Martha Kilcoyne’s article “Formerly Bedridden Chronic Fatigue Syndrome Patient Climbs Mt. Kilimanjaro”, which focused on Step One - Understand Your Version of CFS - in the eight step protocol she believes helped her recover.):
I found the article interesting, but wanted more information, too; i.e., did she recover simply by pacing her activities? I think I do a good job of that already, but recovery eludes me. What, if anything else, was involved? Thanks. – Pris2000
I enjoyed the description of keeping a log of each day's activities and symptoms, etc. However, I must say I was hungry to see what protocol Ms. Kilcoyne used to achieve her current healthy state. Even a small portion of the protocol she followed would have been great to see. I guess I'll have to read the book! Intriguing, but frustrating article. – Bretz
A: (Martha Kilcoyne answered) Thanks for your interest in my eight-step protocol. Step One – Understand Your Version of CFS – is the first tool I focused on to get well. After a year and a half of searching for someone to tell me how to get well and of feeling so helpless and not in control, I finally had the epiphany that no one else COULD tell me how to get well. Until medical science figured out this thing called ‘CFS’, the path to regaining full health would be to actively manage those aspects of the illness that I DID have control over. And, for me, living with CFS was unacceptable.
So I decided to place full trust in the millions of years of evolution that produced my amazingly resilient immune system and I began to provide my body with all the tools that it needed to self-heal. And I did that every day, 24 hours a day, non-stop for a year. Unfortunately, in the beginning, this approach made me even more of a recluse than I liked, but it paid off. Slowly and steadily I regained my full health. I’m not going to pretend that this was easy. It took determination and a lot of support from those around me to stick with it.
As you already know, there are no ‘silver bullets’ or ‘quick fixes’ to defeat CFS. And following just one or two steps in any protocol is not going to regain your health. It’s a dedicated, full-time, full-court press – if you like sports analogies. The rest of my protocol, which is heavy on proactive self-management, is in my book – Defeat Chronic Fatigue Syndrome: You Don’t Have To Live With It. I hope that you too can regain your full health. - Martha
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Cracked Tongue and Eye Pain
Q: …After first being misdiagnosed with Lupus, I was then diagnosed with systemic Fibromyalgia (severe), Chronic Fatigue Syndrome, Irritable Bowel Syndrome, acid reflux disease, sleep apnea, degenerative disk disease, migraines, major depressive disorder and post-traumatic stress disorder… My throat is sore most of the time (due to the CFS) but something very strange started to happen. I developed geographic tongue. My tongue began to "crack" and was very sore with a burning sensation. It went up into the back of my eyes and caused severe eye pain as well. I am now being treated for glaucoma. My eye doctor tells me there is "no pain" with glaucoma, but I have very painful eyes! I was on the drug TopamaxR for about six months for migraines. I wondered if some of these problems could have been caused by this drug or if you have heard of any of the same symptoms from some of your readers? Of course, I am also on a host of other medications as well. – Judie
A: As for your tongue problems, most Western medical doctors don’t regard geographic tongue or cracks on the tongue as something to be concerned about. The burning sensations that sometimes accompany geographic tongue are usually treated with antihistamines. Chinese medicine, on the other hand, considers the color and texture of the tongue to be a significant diagnostic indicator. What the cracks indicate is dependent upon the color of the tongue, the location of the cracks, and when the cracks occur. If you’re willing to try Chinese medicine, a licensed acupuncturist should be able to help you learn what might be causing your problem.
The eye pain is a much bigger concern. Ortho-McNeill Pharmaceuticals, Inc., manufacturers of TopamaxR (generic name topiramate), issued a warning indicating that the drug could cause a number of eye-related problems, including vision loss, pain and glaucoma. For more information about this warning, read “Potential Vision Issues with Topamax.” You don’t mention how long you have been off of the Topamax. Any pain caused by the drug should go away within a week or two after you quit taking it. And your eye doctor is correct in saying there is no pain associated with glaucoma. Eye pain when you are having a migraine is not unusual. (See an illustration of “The Pathways of Migraine” http://www.helpforheadaches.com/lwfiles/illus-pathways.htm to see how part of the trigeminal nerve goes to the eyes.) If you are continuing to have eye pain even when there is no migraine, your eye doctor should be looking for another cause. If he/she is not, it might be time for you to consider looking for another doctor.
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A Mono and FM/CFS Connection?
Q: (Judie also asked) Are you aware if there is any connection between mononucleosis and Fibromyalgia/Chronic Fatigue Syndrome?
A: Mononucleosis is one of any number of infectious diseases and viruses believed to trigger Chronic Fatigue Syndrome or Fibromyalgia. However, there is no known direct causal relationship. At one time it was thought that the Epstein-Barr virus (the virus of mononucleosis) might be the cause of CFS, but research was unable to find a direct connection. (Dr. Martin Pall has written a well-regarded book on his theory about the connection - Explaining "Unexplained Illnesses" - and you can read his answers to ImmuneSupport.com Chat Room visitors' questions about it in this issue.)
See also the groundbreaking new research report from the Dubbo, Australia CFS research team, "Gene expression correlates of Postinfective Fatigue Syndrome after infectious mononucleosis." The abstract contains a link to full text of the article.
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Note: This information has not been evaluated by the FDA. It is generic and is not intended to prevent, diagnose, treat, or cure any illness, condition, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.
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