From Our Readers – Comments & Suggestions – 12-08-10

5-HTP is the Only Thing that Has Helped My IBS-D

I have had IBS, mostly diarrhea, for years and it really affected my life and what I could do and where I could go. I used to do a lot of volunteering for our children's school and had to stop because I could not be depended on because I had to have instant access to the restroom. Any time I have traveled I had to take otc meds and that would mess up my system for a week after returning home. Even taking the otc meds wouldn't stop the diarrhea in most cases.

I also have fibromyalgia so found in our public library (and eventually bought) a book by Dr. Rodger Murphree called Treating and Beating Fibromyalgia and Chronic Fatigue Syndrome. He has treated thousands of fibro patients, and has a website; just Google his name or “treating and beating.” There's a ton of info on his website about treating fibro and the other fun extras, like IBS, that go along with it.

His main protocol for treating IBS is for his patients to take 5-HTP for 2 weeks. [ 5-Hydroxy L-Tryptophan, which promotes the body's healthy production of serotonin]. Go to the website to get the details, and of course talk to your doctor (although he/she might not know what you're talking about). The 5-HTP that I bought (not from his website) has helped me dramatically, although it took a little longer than the two weeks he recommends.

I had actually given up on it and then realized that I wasn't running to the bathroom all the time. 5-HTP raises your serotonin levels and since there are actually more nerves in your gut than in your brain, it not only calms it, but treats for good the serotonin deficiency. It might not work for everyone, but it has been the ONLY thing that has helped me. I have tried everything. I occasionally have flare-ups (usually from a bad diet or stress) but it is not a daily thing any more. I don't take the 5-HTP any more except before traveling or if I want to make sure I won't have problems, like before going out to a special dinner or something. I just take it before leaving and I've been fine so far. – H


Register Now for Bruce Campbell’s Winter Online ME/CFS/FM Coping & Support Course

Enrollment is now open for the Winter 2011 term of Dr. Bruce Campbell's online CFIDS & Fibromyalgia Self-Help Course. The term begins Jan 10, 2011, and registration closes Jan 3.

The course is a 6-week international e-mail discussion group that focuses on solutions – practical strategies for managing common problems of CFIDS and fibromyalgia. Course topics include managing symptoms, pacing, controlling stress, handling feelings, and improving relationships.

The cost of the course, which includes a copy of "The Patient’s Guide to Chronic Fatigue Syndrome and Fibromyalgia," is $30 plus shipping & handling. (Already have the book? Registration to take or re-take the class without buying the book, $20.) Visit our website to learn more and to register:

The program awards partial scholarships for a limited number of low-income participants each quarter. Scholarship applications will be accepted until Dec 13, 2010.

Bruce Campbell, Director
CFIDS & Fibromyalgia Self-Help Program


Two Drug Trials for Adolescent Primary Fibromyalgia

There are two upcoming trials of drugs for symptoms of teens with Fibromyalgia:

• An upcoming national trial of duloxetine (Cymbalta®) in teens with fibromyalgia ( study ID: NCT01237587). So far it is listed as starting in February 2011 at 33 study sites.

• And a notice of a trial of milnacipran (Savella®) in fibro teens was recently posted. It will be based in Albuquerque, New Mexico and maybe other locations?  See – D


Men with FM – Heart or Fibro Flare?

Here's a letter I found on the Men with Fibromyalgia site []. It's titled "A letter from the Knights of Fibromyalgia", and it starts like this:

"Suddenly, in the middle of doing some small task, sharp shooting pains begin in your chest that start traveling down your arm and it is very hard to breathe. Your first thought is a  heart attack. You go to the ER and they say you are fine, it is nothing. The next day or a week later it happens again. Again they say you are fine but this time they give you a referral to a psychiatrist…. What I have just described is a very common Fibromyalagia flare up." This is written by the moderator of the MenwithFibro Forums, and I thought other men might share his experiences as a man with FM pain. – J


What is Flupirtine?

Q: Can you tell me anything about the drug flupirtine? I saw a clinical trial of flupirtine, a nonopioid pain drug, to treat MS in Germany. It sounded interesting. – Y

A: We wondered too, and found this recent abstract – “Flupirtine in Pain Management: Pharmacological Properties and Clinical Use.” It says based on small studies so far, “flupirtine effectively reduces chronic musculoskeletal pain, migraine and neuralgias, amongst other types of pain. In addition, flupirtine produces, at recommended clinical doses, muscle-relaxing effects in the presence of abnormally increased muscle tension. Its analgesic and muscle-relaxant properties were comparable to tramadol and chlormezanone, respectively, in two prospective trials in patients with lower back pain.”

We also found some great information on Adrienne Dellwo’s Fibromyalgia & Chronic Fatigue blog ( about an FDA-approved trial of Effirma (oral flupirtine) as a fibromyalgia treatment. She explains a bit about how it works – e.g., lowering glutamate levels – and notes it appears easy to tolerate, a plus for fibro patients.


HRT Might Not Help FM Pain, But It Might Help Interstitial Cystitis

Re: "Hormonal replacement therapy does not affect self-estimated pain or experimental pain responses in post-menopausal women suffering from Fibromyalgia"

I report this only from my own recent experience. As so many things for us with these conditions, it's a longer story.

I've been on Cimetidine (generic Tagamet) for six months, prescribed by my infectious disease specialist for its off-label immune modulating effects to treat shingles. I don't have Fibro but I do have ME/CFS and IC, and with this crazy dys- or up-regulated immune system, for 20 months I've had shingles and been on the highest dose of Acyclovir possible. It has helped with that, but even more-so it's helped with IC. Potential side effects (of course "rare," but those of us with these conditions always seem to get the "rare" ones!) of Cimetidine are breast swelling and return of periods in post-menopausal women, which I've experienced and researched to learn that it's becasue it increases extradiol.

That would explain why my might sweats have improved, too, but the hormone-related side effects were significant enough that we had to cut my dose of Cimetidine in half twice (though my doctors and pharmacist said they'd never had anyone else have these side effects be so pronounced). Even at the lower dose I seem to be still getting the IC relief. It may not be helpful for others, but I've looked for a forum to share this with people with IC as something to try. If you do try it and have those side effects, be sure to check with your doctor (and perhaps the research) if you have had or suspect you might have had endometriosis, for the estradiol may increase the risk for endometrial cancer. – C


Long Term Antibiotics and Lyme

Re: “Lyme Disease, Its Cause, Symptoms and Treatments: An Interview with Professor Garth Nicolson”

Note: We’re not sure, but we believe the following letter may relate. to Professor Nicolson’s recent article. As we read it, he seems to suggest that the success of different types of antibiotics used depends on the mix of co-infections, which can be complicated. However, as this reader suggests, the ILADS site and the information it provides is well worth reviewing. 

I have been receiving your newsletter for a long time and have, thus far, respected the information you provide and always look forward to reading them. With all due respect, I was disappointed in your choice to print this particular article on Lyme disease. I, and both of my daughters, have been living with Lyme disease, bartonella, and babesia and know, first hand, that the article you printed is false in its entirety.

Lyme and its coinfections devastate lives and it is my hope that one day no one else will suffer from these illnesses. I also know, first-hand, that long term antibiotics work and have made our lives so much better. (Your readers need to know this.)

My request is that you would contact and print the true facts about Lyme from the Lyme specialists themselves at the International Lyme and Associated Diseases Society site ( – L


Do New FM Diagnostic Criteria Leave Something Important Out?

Re: Drs. Bennett & Clauw Debate Abandonment of Tender Point Test in Revised FM Diagnostic Criteria”

As a past RN educator, author on the subject and patient with fibromyalgia, and chronic myofascial pain, I am concerned that the proposed diagnostic criteria are not complete. Omitting the presence of myofascial trigger points (MTrPs) also MPS could cause another decade of misdiagnosis or under diagnosis of FM. Why are we not considering this subjective and objective assessment in screening for FM?

Dr. I Jon Russell, MD, PhD, tells me that MPS (CMP) is not the same as FM, and I agree, but neither are irritable bowel syndrome, Raynaud’s, headache, irritable bladder, etc, which are considered in the new criteria. Myofascial pain and dysfunction is the first complaint in FM, and should be considered specifically in the proposed diagnostic criteria.

Dr. Robert Bennett, MD, FRCP has also written to me: “There have been several important recent advances in the scientific study of myofascial trigger points; in particular their biochemical mileu, electrophysiological properties, magnetic resonance elastography (MRE), activation of pain related brain regions and role in initiating central sensitization. Most importantly there is one study confirming my long held clinical impression that most FM tender points are in fact typical myofascial trigger points.”

Dr. Bennett’s astute observations come as no surprise to me. Research suggests that the tender point model has outlived its purpose, however a hands on exam is more important now than ever. When I speak to FM groups, I find while they have tender points they are not all specific to the model, and they report MTrPs. One need not have the knotted up piece of muscle fiber in a taut band of muscle directly at the area of pain or paresthesias, because MTrPs have specific pain referral patterns. Someone well trained in Travell and Simons would know to trace back from the referral area to the primary MTrP. This might explain why MTrPs were missed when the tender point model was erected.

Why is this information important to central sensitization? Peripheral pain does change our brain. Science shows the loss of the normal orchestration of bio and neuro chemicals in FM. Meditation and deep breathing, T'ai Chi, etc. help calm the brain, but only direct manipulation, either manual or needle, will affect MTrPs. Unlike MTrPs in the acute injury patient, they are resistant to treatment in FM and can be activated by non-traumatic events. I feel, ignoring MPS (CMP), could cause a kaleidoscope of other central and autonomic effects….

If patients, physical therapists, pain management physicians, physiatrists, chiropractors, and body workers understand how to locate and treat MTrPs, shouldn’t we expect our specialists to assess and make appropriate referrals? I was told my sleep study was normal even though I moved my legs 187 times and never once reached stage III or IV in four hours. Should we expect a sleep study on all FM patients, and most importantly, the ability of the clinician to interpret results?

I am not suggesting identification of MPS. will answer all the questions; centralization lends to pain from a light touch and other sensitivities. But we must not let any stone go unturned or lead the clinician and patient down a rough road of confusion and frustration. Researchers need to understand what MTrPs are and how they relate to the FM patient as a peripheral pain mediator to a central sensitization disorder and the relevance disordered sleep, RLS and its cohort PLM.

The new criteria are refreshing, but are not complete, nor is education for the physician who is expected to use it as a tool. What happens after diagnosis? Will there be continuing education (CEU’s) as part of using and interpreting the needs associated with this tool?…

Thank you for your time, your consideration, and your dedication to the fibromyalgia patient. – C


B-12 Deficiency – Is This a Common thing?

Q: Through blood tests, my doctor discovered I had a shortage of B-12. I now go for shots once a month. I went for an EMG nerve test due to the fact my little finger on my left hand seemed to be getting numb at times. The nerve tests were fine. They then discovered low vit B-12. Is this a common thing? I am 77 years old. Would like more information on B-12. – G

A: Here is one excellent overview of the almost countless possible effects of vitamin B-12 deficiency by Dr. Dana Myatt, NMD (“Could a common B-12 deficiency be causing your symptoms?”)

She notes that “Deficiencies of B-12 can cause neurological changes including numbness and tingling in the hands and feet, balance problems, depression, confusion, poor memory and Alzheimer's-like symptoms. Long-term deficiencies of B-12 can result in permanent impairment of the nervous system.” Dr. Myatt also cites recent research finding that B-12 sublingual tablets (delivering B-12 directly into the blood stream) can be as effective in treating deficiencies as injections.

If you search on "vitamin B-12" articles and abstracts in the website you will pull up many pages of links. We hope this helps and that you will feel many benefits from resolving your B-12 deficiency.


Doctors Add Foot Exams to Free Shoes for Needy

Re: The letter “Gently Used Shoes for Haiti” on the Soles4Souls Project

As a nurse who tends to diabetic foot sores and other foot problems among the homeless population in the “tenderloin” district, I suggest other medical centers start charity programs like this, whether it's in connection with or not. [See “Free Shoes and Medical Screenings for the Chicago Homeless.” – N


Publicity about Laura Hillenbrand's Book is ME/CFS Publicity Too

It has been a long time since Seabiscuit, but Laura Hillenbrand apparently has done it again with her new book, Unbroken, and every story about it includes something about her ME/CFS. For example, in this Washington Post article, the title is "Laura Hillenbrand releases new book while fighting Chronic Fatigue Syndrome."

It gives good details, like that because she doesn't go anywhere outside her house for long periods, she's afraid she dresses "strangely." "Things move on. The world changes. And I don't know it." – L


H. pylori and FM, ME/CFS and MCS

Re: The report on “Helicobacter pylori seropositivity in fibromyalgia syndrome” featured in this issue.

I think many cases of FMS as well as ME/CFS are caused by intractable persistent infection. The agent may vary. In some people the immune system will not give up its attack on the infectious agent, causing a range of immune reactions on the gastrointestinal and nervous systems. For many people the immune system settles down and the infectious agent co-exists with the host.

People with ME/CFS and FMS and MCS are the unfortunate people with immune systems that will not give up the fight. Remove the infectious agent and if it is the only one causing the tirade the patient will have relief from their ME/CFS, FMS or MCS. It could be HHVx, XMRV, CMV or bacterial agents such as mycobacteria, and now we see H Pylori is one them too.

That is to be expected because H Pylori is a pandemic persistent infection. Unfortunately for many people I doubt H. Pylori is the only persistent infection causing them a problem. – I


New Lyme "Multi Test Method"

The December 5 LDRD Newsletter headlined a new “multi-test method for the assessment of acute and chronic borrelia burgdorferi (Lyme) specific immune response.” Here’s a link to information on the test developer’s site – – S


Article on Doctors and Thyroid Testing

Seen on the Hunter-Hopkins facebook Friday, Dec 3 – a link to this article: “Why your doctor says your thyroid is ‘normal’”

It begins this way, which rings true to my experience: "I get requests on a regular basis to help people get their thyroid hormones balanced. Most of them are women as they are generally more susceptible to hypothyroid. By far the most common complaint I hear is, “My doctor said my thyroid test came back normal but I don’t feel normal.” When they go back to their doctor to insist they are not “normal,” they are sometimes written a prescription for an antidepressant as the doctor quickly scurries out of the exam room."  – C


Note: This information has not been reviewed by the FDA. It is generic and anecdotal and is not intended 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 in collaboration with your professional healthcare plan.

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