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From Our Readers: Comments & Suggestions – 6/04/2014

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My experience with Dr Clauw’s Magnesium treatment

Re: Daniel J. Clauw, MD, on the Effective Treatment of Fibromyalgia – An Update

Both my husband and I were in the initial double blind studies Dr Clauw did at Georgetown. With the first injection I experienced increased pain, accompanied with a feverish hot feeling on the same side of my body the injection was given. I also experienced generalized mild flu-like symptoms. Symptoms lasted about a day. My husband had no symptoms.

Following 2 weeks of 2 injections per week I began to see improvement. Suddenly my pain levels decreased and my energy level began to rise. With each subsequent injection the pain level dropped and the energy increased. My husband continued to have no symptoms. At the end of the course of injections I returned to the most normal life I’d had in years.

By the end of the study I informed the doctors that my guess was I had been getting Magnesium and my husband, placebo. I was correct. 20 years later I have continued using Magnesium Sulfate injectable, but more like 1 per week, sometimes 1 per mo, and periods of time that I did not take the injections. Decreasing the dosage increased the symptoms in time. Stopping the injections brought a gradual a return to severe pain and inability to function normally in my daily life. The time it took to deplete my body and return to the pre-magnesium pain and energy levels depended on personal factors in my life and the rate my body was using up magnesium.

I have been through several repletion series, 2X week for 12 weeks, all but one time was successful. It turned out the doctor who gave the injections during that period was using a very small needle and not doing the deep muscle injections. I should have paid attention. I have never had a problem from the long term use of Magnesium Sulfate injectable and consider it the most successful part of my treatment protocol. I am utterly grateful to Dr Clauw and if we still lived near him we would have him as our doctor. – MSRnlds



Re: VIDEO: Running with Fibro

Just watched your video and was inspired to say the least. I have had this MONSTER (fibro) for about two years. I have gained over 901bs and feel so ugly on top of my terrible pain and all the awful things that come with it.

I want my life back!, this 45 yr old has alot of Spunk left. But I am scared, scared of failure. But as a Mother Of 4, 3 which are teens I NEED to be there for them, I NEED to do this FOR MYSELF!

I feel as though I am slowly withering away and it frightens me. You have motivated me more than ANYONE else because you suffer with this Monster as well. THANK YOU, thank you and I hope you inspire many others as you did me. – Coronitas45


What else for fatigue?

What else should one take for extreme fatigue? – ldylarke

Editor: I personally take three supplements to combat fatigue: CoQ10 (Ubiquinol), NADH, and high-dose Vitamin B-1 (thiamine). The combo works very well for me and I can definitely tell a big difference if I stop taking one of them.

Here are articles I wrote about NADH and high-dose thiamine:
“Running on Empty? Fuel Up with NADH”
“How I Found My Long-Lost Energy” (B-1/thiamine)


Reducing Inflammation

Re: Inflammation Relief and Recovery

To reduce systemic low grade inflammation as in fibromyalgia or ME the best thing to take is without doubt, EPA/DHA 3 grams daily.

This combination modulates NFkB, the primary initiator of inflammation. In addition the EPA is a strong ligand for PPARalpha and PPARgamma. The peroxisome-proliferator activation receptors play a major role in reducing inflammation via lipid metabolism.

Do your homework on this field, it is worth the effort to read the research and there is plenty of it free on the internet, just search the key terms:
EPA/DHA, NFkB, inflammation and PPAR.

You can also improve the treatment by adding vitamin D3 5000IU daily. – IanH


Anti-Thiamine Factors

Re: How I Found My Long-Lost Energy

Perhaps one of the reasons that patients are requiring varying high dosages of thiamine in order to be effective, is that they might be eating food that contain or are contaminated with anti-thiamine factors.

There are indeed quite a few anti-thiamine (thiaminase) compounds, including foods or herbs like Horsetail (silica), Red Fern, Blueberries, Chicory, Red Currants, Beets, Brussell sprouts, Red cabbage.

Also molds found in cereal grains, including wheat and corn and their by-products contain strong thiaminase enzymes. And another reference noted that “thiaminase enzymes are most often ‘found in colored plants’…’the anti-thiamine activity is bound to phenolic compounds’. So perhaps if one eats a lot of foods high in salicylates and/or phenols, then it may be helpful to avoid some of those foods.

Finally, Dr. Derrick Lonsdale M.D., considered by many to be the country’s authority on thiamine, found that if he gave high-dose thiamine for several months to a year, that it caused some of his patients to develop deficiencies in folate and B12. – dannybex


Stimulants for Fibromyalgia

Re: Treatment-Resistant Woman with Fibromyalgia Experiences Marked Improvement with Dextroamphetamine

Stimulant medication has significantly improved my fibro sxs. ADD (inattentive type) was diagnosed after my fibro dx and has changed my life in many positive ways. I am sure I have always had ADD. My hope is for more research to address the strong association between attention deficit disorders and fibromyalgia. My experience of talking with many fibro patients in the past 9 years as a Disease Mgt registered nurse has been apparent to me that many patients likely would also fit in the spectrum of ADD or ADHD. I was in my 50’s when I was diagnosed. The work that Nadeau and Quinn have done for girls and women with attention deficit problems is huge. Their chapter on Fibromyalgia in “Understanding Women with AD/HD” gave me the information I needed to successfully live and work well with fibromyalgia and ADD. I am so anxious to see the medical community embrace this association and offer the appropriate treatment and help for all those who need it.Thank you so much for your article. – sdi

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