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Letters From Our Readers – Comments & Suggestions 12-05-07

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Low DHEA Made Life Flat

In April 2006 I learned that my DHEA* levels were very low – 68. The scale used is somehow different than the one of the previous letter writer [“High DHEA Revealed” from a migraine patient whose blood testing revealed her DHEA level was so high it constituted a “cardiac risk”].

My levels had dropped off over the winter months and I felt very flat emotionally. I couldn’t experience joy, though I was on anti-depressants. My experience of the world felt flat and gray – as if it lacked three dimensions, color, and “texture.” I was on Kauai for a vacation when my doctor called to tell me the results of my blood tests. It was a relief to understand why I wasn’t enjoying Hawaii, a place I love. My doctor had me take 25 mg. of pharmaceutical grade DHEA. I recently stopped using it when I learned that some doctors recommend going off DHEA for periods of time and then getting retested. – Sue

* Note: DHEA is a human hormone naturally produced in the body by the adrenal glands. It circulates in the blood stream and is converted into other hormones like testosterone and estrogen. The body’s production of DHEA reaches its peak between the ages of 20 and 30, and then rapidly declines. By the age of 80, production of this hormone is at only 5% of peak.

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Negative Side-effects of ZanaflexTM

This is in reference to “The other side of ZanaflexTM [a letter describing one person’s negative experience with the drug tizanidine (brand name Zanaflex), a short-acting muscle relaxant that works by blocking nerve impulses to the brain and may be used “off label” for pain].

I was taking two Zanaflex three times a day, and at first I thought they were helping. After about a week, I noticed that my cognitive ability, short-term memory, and the ability to make good decisions was greatly hampered by this med.

After having been off of them almost two years, I’m finding out all the things I missed while taking these “zombie” meds, because that is what in effect you become. You don’t know what is going on around you, what you should be doing, and any spouse living with someone like that is going to go crazy. You really cannot work outside the home because driving while taking Zanaflex drastically slows down your response time, and at work, you will be far less effective doing any kind of paperwork because you stream two thoughts together. It was the most depressed I’ve been when I was taking Zanaflex because I couldn’t really be responsible for my actions or words. I think it must work on the brain chemistry in a way that definitely forces the muscles to relax, but the end result was that I could no longer perform my job with a high degree of skill, and I was asked to leave the company. I haven’t taken any since, and I recovered my cognitive abilities soon after quitting this drug. Good Luck to anyone who takes it and don’t have a high responsibility job! – Carrie

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Information on Multiple Chemical Sensitivities Wanted

Q: Do you also have an MCS edition? There is obviously a crossover between them all. – Dorothy

A: We do not have a separate MCS edition of Treatment & Research News. But we know many ME/CFS/FM patients also have MCS and/or PTSD, IBS, IC, RLS, and other “overlapping illnesses.” (Most of the research and clinicians we cover in the ME/CFS & FM editions – from Dr. Pall, Dr. Bell, Dr. Pellegrino, and Dr. Clauw to research reporter & MCS patient Cort Johnson – are addressing MCS as part of this constellation of overlapping disorders.) We try to find relevant materials to share on these illnesses, including research abstracts, but we also try harder when readers like you request extra coverage, and we invite you to bring our attention to anything you come across that can be shared with others. Just click on “Send us a letter” in your newsletter’s ‘Letters From Our Readers’ section.

Meanwhile, a rich source of information is our ME/CFS/FM Message Board http://www.immunesupport.com/chat/forums/index.cfm?B=FM, where you can search on ‘MCS’ and pull up hundreds of postings. If you’re not a registered user, registration takes but a moment and you’ll be able to participate using an anonymous username.

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Separate Thyroid Message Board Would Be Helpful

Q: A number of people on the ImmuneSupport message boards think having a thyroid board would be quite helpful. I…and another message board user on the Arthritis Message Board…have been answering some posts of people who ask questions about their thyroid problems. Many of us do have more than one autoimmune disease. I participate in other boards and find it very helpful to get the information needed about thyroid health. Thanks for your help on this matter. – Anon

A: Thank you for your suggestion. This is a particularly good time for suggestions and feedback, as we’re currently reviewing the structuring of our message boards and chat rooms to determine the configuration that will be most useful for users. We’ll give your suggestion serious consideration.

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Educating the ‘Earth People’

I don’t care how old, healthy, happy, or crazy a person is, it never fails that when I say I have CFS, they say, “I think I do too!” At that point I give them pamphlets with info on CFS and FM. I use this to educate the “Earth People” who haven’t a clue about our illnesses. You know I have to laugh at this response. It never ceases to amaze me! – Yellowstrawberry

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More Flu Shot Thoughts

I think that the only responsible thing to do regarding [the decision on whether to have] flu shots is to know, in detail, how one’s immune system is, what dysfunctions it might have, and the implications for such things as flu shots. In these illnesses (FMS, CFS/ME) there is a general “laissez faire” on the part of both doctors and patients in not doing the essential work of knowing in detail all the dysregulations and abnormalities that are present in each particular patient. We cannot continue to make decisions regarding treatments on hearsay, hunches, symptoms, feelings, etc. Each patient (with a good specialist) has the responsibility to know, exactly (every six months, at least), all their detailed analysis. Patients with other illnesses (Rheumatoid Arthritis, Lupus, HIV, renal disease, etc.) would never accept not having their tests up to date and knowing, exactly, the results. Why do we? – Clara

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

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