Letters From Our Readers - Comments and Suggestions 8-08-07

I wanted to tell you about a program at Cedars-Sinai hospital in Los Angeles that changed my life. It is their Fibromyalgia Rehab program run by Dr. Stuart Silverman. It is a six-week program that meets twice a week for about four hours. You meet with a physical therapist, occupational therapist, and a psychologist. It provides the patient with tools to better manage their pain and their life. It really changed my life and gave me the motivation to start to reclaim my life as my own, not the disease’s. I found out about Dr. Silverman on your website and did more research about him and found out about this program. Since going through the program in January, I am now better managing my time, participating in light exercise, and psychologically engaging in my life again. – Erin

Note: We’re delighted to have another occasion to highlight Cedars-Sinai Medical Center’s highly regarded Chronic Pain and Fibromyalgia Rehab Program, which offers complete assessment, treatment, and self-management services for patients with Fibromyalgia, chronic pain, and rheumatoid-related diseases. For more details and contact information, see “Cedars-Sinai Medical Center Fibromyalgia Rehab Program – A Pioneer in Los Angeles.”

Treating Lyme Disease Resolved Fibromyalgia

After living with FM that was diagnosed after contracting Lyme disease in 1987, I spent 17 years trying to get treatment. All of the conventional treatments for Fibromyalgia were doing very little, and my pain and cognitive symptoms were worsening. After reading articles on your website, specifically by Dr. Garth Nicholson [see also the article in this issue titled "Lyme Disease & Chronic Fatigue Syndrome - A Patient-Researcher's Perspective"], I suspected that I had chronic Lyme disease. I was referred to a Lyme-literate doctor - and after 31 months of a combination of antibiotic treatments my FM/Lyme disease was resolved…

I am now back to the level of health I had 20 years ago… During the antibiotic treatment my doctor recommended that I use a probiotic to maintain intestinal flora destroyed by the antibiotics. I began using jarro-dophilus [a supplement containing probiotic bacteria] and discovered that not only did it prevent gastric symptoms associated with antibiotics, but it also resolved my IBS symptoms as well. It is now an addition to my daily regimen of supplements. Since Lyme disease does relapse in many patients, I also added a regimen of cat's claw (samento) as well as a garlic supplement to enhance my immune system and I have had no further relapses.

Anyone diagnosed with CFS or FM after contracting Lyme disease should consider the possibility that it is being caused by the Lyme disease bacteria and…should seek treatment from a Lyme-literate physician. A list of these physicians can be obtained through the Lyme Disease Association…

This disease has been discovered in 49 states, so anyone who spends time outdoors or who lets their animals outside runs a risk of contracting Lyme. Educate yourself on the disease and symptoms. Clinical tests available are only 60% accurate. If you think you have Lyme, don't give up until you can find a doctor to treat you. I am living proof that long-term antibiotic treatment does work. – Sheryl

Note: To access the Lyme Disease Association’s automated doctor referral system, based on a list of "Lyme literate" healthcare providers, go to http://www.lymediseaseassociation.org/referral/ You will need to register and select a password to log in.

Change Is the One Constant

I've had FM since 1993. The one "constant" is "change." Just when I think I've got this crazy condition figured out and have a working treatment - BOOM - everything changes. The "tried and true" no longer works and I am back to pain and relentless fatigue. I really enjoy your newsletters. It helps me feel connected and not as isolated. – Sue

Dramatic Difference With Provigil^R

I was diagnosed with FM in 1998. The pain and exhaustion resulted in drastic life-style changes for me, including leaving my high stress job, selling my home and moving in with my mother. I took a position that was well beneath my skill set but that offered no stress. These changes allowed me to have enough energy to maintain employment but left little for anything else. When I was prescribed Provigil^R, the difference was dramatic. [Provigil - generic name modafinil – is a drug approved by the FDA for prescription to treat narcolepsy and several other conditions associated with excessive daytime sleepiness; widely used off-label.] A good deal of my “fog” was lifted and I was no longer in danger of falling asleep at the wheel.

In addition it lifted my affect, allowing me to actually wish to attend a social event occasionally. Provigil has kept me from unemployment! Unfortunately, my insurance carrier considers it “off-label” use, and I have to pay out-of-pocket for it. I consider that money part of my entertainment budget. – Linda

IBS and Fibro

Your recent feature “Irritable Bowel Syndrome (IBS) Concurrent with Fibromyalgia - Surprisingly Frequent” is a very important article and was very well presented. It covered the multiplicity of causes, symptoms, and possible aids. I am currently treating my IBS by making sure I get a good measure of fiber, usually through fruits and veggies, and by monitoring my bowel activity. I never allow more than 24 hours to go by without using a natural laxative to help me obtain a regular bowel movement. I find that motility is more problematic than anything else. I’m hoping that these studies will learn to a more helpful way to control IBS for Fibro patients. – Anon

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Note: This information has not been evaluated by the FDA. It is generic and not meant 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.