Letters From Our Readers - Comments & Suggestions 03-05-08

I found out what my fibromyalgia of 25 years is – it's Lyme disease, a bacterial infection I acquired from a known tick bite in my foot in 1981. I had no symptoms at the time, so when the sore shoulder muscles, etc., started three months later, I had no clue it was from the tick bite. I only found out two years ago, when I became very chemically sensitive and went online to ask why and someone told me. I blood tested positive and went on antibiotics and within a week, the “Fibro” pain went to zero!

So a bacterial infection invading nerves and soft tissue can cause a myriad of symptoms. It's a systemic disease mimicking so many other conditions. If you would like to, …post this on your site so others can get themselves checked out for Lyme, too, if they want to. – Robin

Note: For more information, or to ask questions about Lyme and Lyme testing, you can visit ImmuneSupport.com’s busy Lyme Disease Message Board. If you’re not yet registered to contribute, you’ll be prompted to do so; it takes only a moment. (We host 16 message boards - from AIDS to Worship - in our Community space.

An Active Participant in My Recovery

If I’d had the knowledge I have now in the beginning of my sufferings with Lupus and FMS, my whole life would have taken a different path. Now, though it has been many years, I have learned to overcome the worst of my obstacles, and accepted the things I cannot change.

I have changed my eating habits, dropped 40 lbs, and become an active participant in my own recovery. I would love to help others with my knowledge and experience… I feel I have a lot to offer to others who suffer unnecessarily with chronic pain etc. I know full well how life-changing, and devastating, it all can be.

I said I would never jog or walk again, I am; I would never feel good again, I am… I am trying to share my own story of health, healing, and being an active participant with good doctors, and most importantly, self-care. – Jane

Note: One good place to share ideas, tips, and doctor suggestions is the ME/CFS & FM Message Board. See these three permanent strings in particular – "Please Post Your Good Doctor Here" (this includes hundreds of messages, so include state or city in your message title to make searching easy), “What Worked for Me” and “Tips for Managing Daily Life.”

Lyrica^R and Vision Problems

My rheumatologist put me on Lyrica last summer. It did help with pain and endurance, but I developed several side effects – the most important one being that my vision became blurry. I had been checked at Baskin Palmer at the University of Miami for a thorough vision screening, which was perfectly normal less than a year previously. I stopped Lyrica, went for thorough vision rechecks, and they found retina problems and cataracts. There was no problem before. These have not resolved since September 2007.

I also developed sharp nerve-like pain down the front of my calf. This resolved after stopping Lyrica. I thought others might want to know. – Jeanette

Lyrica^R and Headaches

Just to let you know that Lyrica so far has been the best med, for FM patients. It works for RLS (restless leg syndrome) and I can sleep better. It is so frustrating because it is very good, even though it doesn't take the whole pain away, but I get some relief. However, I wake up with bad headaches the next day.

I've suffered with migraines for 15 years. So that's the problem I have with Lyrica. It makes me very angry that the only thing so far that has helped me triggers a headache. I know that very soon we will have another medication available that will be much better. God bless, and don’t lose hope. – Helena

Don’t Dismiss Guaifenesin Protocol

I have been a long-time subscriber the FM Newsletter and I just wanted to say, "Keep up the good work!" I have many other resources for finding information on my condition, but yours is the only publication that I've found to have "one-stop shopping" so-to-speak. I can read your newsletters and get information on just about anything I need info about! You're also always current on the latest advances for the disease.

There is one note I would like to make, however. I read the transcript from your Live Chat with Dr. Charles Lapp on Feb 1, 2008, and something he stated alarmed me. When asked his opinion regarding Dr. St. Amand's Guaifenesin Protocol, he said, "I have not been a fan of guaifenesin for treatment. He suggests that [phosphate] in muscles may cause fibro pain. There is no real evidence for this. Double blind studies of guaifenesin in CFS/ME and FM have NOT shown any benefit, and that is my personal experience also."

Dr. St. Amand does suggest that phosphate build-up in muscles may cause Fibro pain, but his research goes much, much deeper than that. I have been on the Guaifenesin Protocol for over six years now, and I'm not sure where I would be without it. I went from being basically homebound and almost bed-ridden, to being able to maintain a reasonably normal life with minimal FM flare-ups since beginning the protocol.

This improvement was apparent within a few weeks of beginning the protocol and has consistently continued throughout the past six years. I have also met MANY others with FM on the Protocol who have similar stories. While it is true that not everyone seems to benefit from the protocol, from what I have seen and heard, it's much more of an effective treatment than Dr. Lapp would suggest.

For anyone with FM who is seriously in need of a vastly improved quality of life, I would strongly suggest that they get Dr. St. Amand's books and check out his website… Do not simply dismiss the protocol as a possible treatment! – Elissa

Note: For more information about the Guaifenesin Protocol and links to Dr. St. Amand’s books and website, see: “An FM Patient Counselor's Primer on the Guaifenesin Protocol" and “Q&A Session with R. Paul St. Amand, MD - Dec 7, 2007.”

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This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat or cure any condition, illness, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it with your professional healthcare team.