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Letters from our readers on Discoveries to Share - 11-08-2006

  [ 320 votes ]   [ 1 Comment ] • November 8, 2006

Mirapex™ – starting on low dose may be key
I have been using Mirapex™ for a month now, and it has made a great difference to me.*… I would say my FM pain has reduced by 50 percent at least, although it does not get rid of the fatigue. I cannot comment on whether it could make you sleep better at the moment, because I am on a very low dose, but… I am waiting to find out if it will help the higher the dose goes. I also get restless leg, and it is wonderful to be able to go to bed without your legs feeling extremely uncomfortable and rigid.

Having spoken to many people [via the message boards] it would appear that the people who benefit from Mirapex™ are the ones who start off on a very low dose, and have it titrated [adjusted] until they’re satisfied with the outcome. Many others have been put off because they were put on a lot higher dose from the start, which then had more serious side-effects. – Charlie

* See “Critical New Piece of Fibromyalgia Puzzle Found?”


Benefit of testing for Rickettsia/The Marshal Protocol
I was diagnosed with Fibromyalgia/CFS some years ago. Then, after changing my doctor – who did many blood tests on my first visit – I was told that I actually have three strains of Rickettsia bacteria. I am now being treated with antibiotics using “The Marshall Protocol”* [to rid the body of Rickettsia and similar tick, flea, and lice-borne bacteria-like organisms that colonize within the cells, too minute to be seen with an optical microscope] - which will kill off the parasite that is causing all of these problems, and hopefully I will go into good remission. Anyone who thinks they have FM or CFS should ask for a blood test for Rickettsia. This could be causing all the problems. – Val

* See “The Marshall Protocol for Treating Chronic Fatigue Syndrome: Interview with Trevor Marshall, PhD,”


San Antonio researchers on the cutting edge
Like most FM patients, I have tried a plethora of medications, supplements, and techniques. Some good, some bad, most of no significant value. Fortunately, you keep plugging away, trying to find something that will at least help someone. Please keep at it, keep it coming. I appreciate every doctor and scientist who contributes [and] am fortunate enough to have met and done a study with one of the top Fibro researchers here in San Antonio – I. Jon Russell, MD, PhD. - Ramona

Note: Dr. Russell, director of the University of Texas Clinical Research Center, announced recently that his team has submitted for publication to the journal Pain an article titled “Discrimination of Fibromyalgia patients from normal controls using the levels of cerebrospinal chemicals.” These tests, he says, distinguish the spinal fluid of FM patients “with an accuracy of 90 percent.”


Try cutting pain by cutting sugar
I’ve had FM for nine years and I’ve recently discovered that my pain is greatly reduced, and sometimes eliminated, if I avoid eating any refined sugars (including honey). I wonder if any number of foods could negatively affect different people. If so, each person would have to test for themselves to discover such problems. – Peggy


More on good doctors
I realize how fortunate I am to live in the New York/Connecticut area. As a result I was a patient of Dr. Jay Goldstein [now retired] way back when, and am currently a patient of Dr. Derek Enlander and several others. I'd like to recommend another FM/CFS expert in New York City – immunologist Dr. Susan M. Levine. – LB Note: For FM physician contact information by country, state, and city go to the “Good Doctor List” link at

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Article Comments Post a Comment

Mirapex for Fibromyalgia? Maybe Lyrica instead?
Posted by: onajourney
Nov 9, 2006
Mirapex can be a miracle drug for some and a wrecking ball for others. I too started on a very low dose of Mirapex and increased the dosage slowly over a 6 month period. I loved it - pain was gone! What I didn't realize is what the side effects were doing to me until it was too late. I am the example of a worst case scenario - lot's of energy, no pain, but...extreme sleep deprivation, loss of concentration, loss of memory, hallucinations, gambling addiction, falling asleep while driving. As a result I had two accidents (not car accidents - thankfully) that have permanently affected my lower back and I am now permanently disabled. However, I have started taking Lyrica and that has worked wonders with the pain but without the same side effects. Unfortunately it makes me sleepy so I'm still not driving far from home but I'm hopeful that too can be resolved. Please do not stop taking Mirapex simply because of this comment. All I ask is be aware of any and all changes in your behavior, sleep, concentration, etc. It is my understanding that I probably have a compressed nerve/spine in my neck that prohibits the Mirapex from working, however, this diagnosis/theory has not been confirmed for me.
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