Letters From Our Readers - Comments & Suggestions 11-28-07

Re: “ME/CFS & Chronic Infection of the Gut – Notes on Dr. Kenny De Meirleir’s Presentation in Perth.” This is an interesting article, but nothing really new, in that stealth, or chronic infections are a major contributor or cause of CFIDS. There is a comment I would like to make, and that is, Chlamydia pneumoniae cannot be cured, or removed from the body with just one antibiotic, azithromycin! One of these days our mainstream medical society will wake up and realize that it has three life forms that repeat and infect us continually: elementary bodies, replicating bodies, and the cryptic form of this bacteria.

One antibiotic only sends it further into hiding, making us sicker in the long term. Chlamydia pneumoniae has been proven to be linked to: multiple sclerosis, Chronic Fatigue Syndrome, cardiac disease, interstitial cystitis, prostatitis, Crohn's disease, inflammatory bowel disease, Alzheimer's disease, asthma, arthritis, Fibromyalgia, chronic refractory sinusitis, macular degeneration, and others… Dr. Charles Stratton of Vanderbuilt University proved this! But, no one seems to want to listen. (Hmmm, kind of like H. Pylori or washing your hands before surgery!) Hopefully, one day a "light bulb" will go off. For what it's worth, perhaps someone will benefit from this statement. – Slevah

Note: To read more about Chlamydia pneumoniae and Dr. Stratton’s research, see: "Chlamydia Pneumoniae in Chronic Fatigue Syndrome and Fibromyalgia"

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

Taking Responsibility for Ourselves

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

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.

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.

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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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.