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Letters From Our Readers – Q&A Session 3-28-07

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Is it Guillain-Barre or Epstein-Barr?

Q: I am really confused. My doctor sent me for blood work and said I tested positive for the Guillain-Barre virus. At least, that's what I think she said. Maybe it was the Epstein-Barr. Which one do you get with ME/CFS that causes the flu-like symptoms, horrible neck and shoulder pain, lack of control of body temp when it gets cold, trouble walking, memory problems, vision problems, and on and on and on? I know I have FM. I've had it for over 20 years, but this is so different… – Nona

A: Since Guillain-Barre Syndrome is not diagnosed by a blood test, but rather by a ‘nerve conduction velocity test’ and sometimes a spinal tap, your doctor probably said Epstein-Barr virus. Also, EBV can cause the flu-like symptoms you describe. You can find more information about Guillain-Barre Syndrome at the NIH Web site: http://www.ninds.nih.gov/disorders/gbs/gbs.htm and more about Epstein-Barr virus at the CDC Web site: http://www.cdc.gov/ncidod/diseases/ebv.htm

Your question also highlights something we all need to remember. As patients, we sometimes feel intimidated by doctors, and hesitate to ask too many questions. The fact is, we are consumers paying doctors to provide a service for us. We have every right to ask questions and to expect complete and accurate answers. Because of the cognitive functioning problems that accompany ME/CFS and FM, sometimes questions don’t occur to us until we’ve left the doctor’s office. In those cases, call and ask for clarification. If you’re not sure what questions to ask, go to the National Institutes of Health’s “Questions Are the Answer" site. It is one of the most helpful patient tools we’ve seen.

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ME/CFS, FM and Surgery

Q: I read your information often. However, I haven't seen anything on having surgery with Fibromyalgia, Chronic Fatigue Syndrome, sleep disorder, and restless legs syndrome. I am going to have a pelvic floor construction. In a case like mine where the surgery will be done below the waist, I would rather have the epidural and also be in a very light sleep so I don't know what is going on, as that alone will cause me to have a flare-up. With the Chronic Fatigue Syndrome and my age (59 years old/female), can my immune system stand up to a surgery such as this one? – Kathryn

A: There is an excellent article on this subject in the ImmuneSupport.com archives: “Guidance for Fibromyalgia Patients Having Elective Surgery”

Other patients have reported that following Dr. Robert Bennett’s recommendations in this article made a big difference in their post-surgical pain and recovery time. They advise printing several copies of the article and giving it to all doctors, surgeons, and anesthesiologists involved. And don’t just assume they’ve read it. Make sure they explain to you in detail what steps they’re going to take to reduce the intensity of any post-surgical flare-up.

Also talk with your doctors about your immune system concerns to see if there are additional preventative measures you can take. Even under the best of circumstances, people with ME/CFS and FM generally have a longer post-operative convalescence period than most. So allow yourself plenty of extra time to recuperate and don’t push yourself too soon. We wish you the best in your upcoming surgery.

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How Can I Find a Doctor?

Q: I am looking for a doctor in the State of Maine who specializes in the treatment of Fibro & CFS. Please provide name, number, and address if possible. I was diagnosed with Fibro/CFS after an accident in 1995. I would like to find a doctor who can help me. I do not have any pain-free days now. – Susan

A: For information on finding a doctor and a link to the Co-Cure “Good Doctor List” go to http://www.immunesupport.com/community/referral/ Co-Cure hosts a listing of doctors who have been recommended by patients – grouped by state or country.

Calling or visiting a local support group is another good way to locate a specialist in your area. Other patients often provide the best referrals. You can search for a support CFS/FM group at: http://www.fibromyalgiasupport.com/supportgroups/ – and the Centers for Disease Control offers a similar state-by-state CFS support group list http://www.cdc.gov/cfs/support/supus.htm

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How Can I Contact Researchers?

Q: Please can you advise how we could contact some of the doctors/researchers mentioned in your articles (e.g., Kenny De Meirleir), so as to find out if it were possible to take part in their studies? It fills the reader with great hope to see such studies, but can be deflating to find no access to these people or, more realistically, to doctors who may have the knowledge of their work and be able to offer treatment. – Leon

A: Indeed, knowledgeable physicians are still in short supply in many areas. Most CFS/FM researchers are clinicians who draw subjects from their own practices or the area where they practice. For example, although the research of Kenny De Meirleir, MD, is recognized worldwide, he is located in Belgium. Another very active researcher – Daniel J. Clauw, MD – conducts research at the University of Michigan. To track trials recruiting in your area, you can search the ClinicalTrials.gov site – which lists both federally and privately supported studies. Search on condition and city/state or research center.

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Note: This information has not been evaluated by the FDA. It is not meant to diagnose, prevent, treat, or cure any condition, illness, or disease. It is very important that you never make a change in your healthcare plan or regimen without researching and discussing it in collaboration with your personal healthcare team.

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