From Our Readers – Comments & Suggestions – 11-03-10

Alert: Ask that Medicare Drug Plans Cover Fibromyalgia Prescriptions

On Tuesday, Nov 2, the American Pain Foundation issued a call to action urging all US fibromyalgia patients and advocates to make their voices heard BEFORE NOVEMBER 30 regarding the need for Medicare coverage of prescription drugs for FM pain (currently not offered).  Any interested party may submit written/e-mailed comments for consideration in an Expert Panel's review of the US Pharmacopeia's Medicare Model Guidelines. For more info and an e-mail link, click HERE


Is There Caffeine in NT Factor to Pep You Up?

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

Q: I… had side effects when trying NT Factor at the recommended doses and was wondering if anyone else experienced the same side effects. My pulse rate was constantly too high and I couldn't relax. I reduced the dose down to 1 a day and have been able to tolerate that, but I'm not sure it is doing much good.… Of course the manufacturer does not list the adverse effects. I was curious about exactly what the NT Factor ingredients contain but could not find out. Must be caffeine in there to pep you up? – C

A: Take a look at the information on the NT Factor product in ProHealth's store [Mitochondria Ignite with NT Factor]. For any ProHealth product, you can click on the LABEL INFO tab to see details on all the ingredients  For this one it looks as though the ingredients include lipids (special fats), "good" bacteria, and food for the good bacteria. No stimulants that I can tell.

But I decided to e-mail Prof. Nicolson on the side effects question []. This is what he wrote back – "There are very, very few side effects using NT Factor. This all-natural product does not contain caffeine and has been administered over 2 million times to adults and children with only a small handful of reported adverse effects. Since patients with reported adverse effects were taking other drugs and supplements at the time, it is difficult to assign an adverse event to NT Factor in any of these small number of cases. Of course, adverse events can and do occur with any drug or supplement, and the rate of adverse event reports with NT Factor are certainly well below most other drugs or supplements. When and if such events occur, it is best to immediately discontinue taking the drug or supplement and report the event to your physician." – M


Chronic Lyme, ME/CFS & FM Overlap

I found this article in the ProHealth library – "Late and Chronic Lyme Disease: Symptom Overlap with Chronic Fatigue Syndrome & Fibromyalgia" [by Sam Donta, MD, published in 2002]. Still today, I believe, as the more recent reader comments state, "this article does a great job of explaining the pathology of Lyme disease," which is so little understood. "Best report available." – H

Note: Dr. Sam Donta, MD, is a much published infectious disease specialist and Lyme expert based in Boston.


US Prescription Drug Disposal Day Saturday, Nov 13

Communities across the the US will accept unused and unwanted prescription drugs anonymously at designated sites on Saturday, November 13. Visit and click on your state & county or zipcode to see a map marking collection site(s) nearest you. – American Pharmacists Association

Note: As explained at, it is important not to dispose of drugs in household trash, down the drain, or by flushing. Huge amounts are getting into the water we drink and into the fish and other life in our waterways. If there's no disposal site convenient to you, your pharmacist will have suggestions.


Fibromyalgia as Amplified Pain

Re: Article on "Fibromyalgia – Ultimately a Disease of Amplified Pain."

Good article. I thought the info in this article was helpful and easy to understand. After 30 years of FM/CFS, I pray for a cure. Please PLEASE keep looking. – M

This article is one of the absolute BEST at describing the way I perceive my Fibro pains. It started a whole new line of thought for me and others. – S

This article settled so many questions/conditions that are going on with my fibro now. I seem to be able to experience intense pain in places that are not nor have ever been injured! A recent flare sent me screaming to my doctor: A)this was a before now never experienced situation and B) the pain was to me life threatening not to be ignored.

Now I know on a conscious level that there is no cause to the pain and it can happen! I am frustrated by the "it can just happen" aspect of the situation but at the same time a large part of my coping skills are holding the belief that this too shall pass. Now I know a "phantom pain" can cause just as much havoc as the real thing! Unfortunately learning to calm myself in this new situation is going to be a rough one to learn. – W

Great article but…it short of left me hanging. I've had Chronic Fatigue Syndrome with limited Fibromyalgia until the past few years where now it gets worse (more excruciating and lasts longer), which would make sense reading the information here whereby the pain memories are stored. That would mean that as more time goes on, the memories from the past FMS episodes would also be stored! YIKES! So where are the treatments? What is one to do? I have been able (in the past) to treat it acutely but I've been on Lyrica and pain meds and Celebrex since May of this year this time, and whenever I try to wean down, I get zonked again! This is NO FUN which anyone suffering from ANY kind of pain knows.

But how is the best way to treat this? I have found my blood sugar levels feel all over the board but when testing they aren't, which explains to me that the insulin and possibly cortisol (or adrenaline) that affect insulin excretion are probably the culprit making me feel hungry, weak, shaky, etc. So how do I stabilize this time? I'm not really sure what to do as it seems it's so much worse now than it ever was in the past. A follow up article on effective treatments would be great.  ; ) – S


Giving Up Gluten & Grains Helped My FM Symptoms

I recently read…a great article about gluten and grains. Please take time to read it (link below). It really helped me to make logical sense as to why gluten and other grains can cause a myriad of problems in humans. Because almost all of our processed foods have one grain or another mixed in, I believe we have just been overdosed. For me, giving up the offending grains has made quite a significant difference in the severity of my symptoms. I hope that this might help others who have to deal with this frustrating dis-ease. – D (

Note: This article on digestion and improving digestion was excerpted from The Paleo Solution: The Original Human Diet (grain- & dairy-free), by nutrition researcher Robb Wolf.


Thinks Most FM Patients with Fatigue Just Misdiagnosed

Re: "Fatigue in Fibromyalgia: A conceptual model informed by patient interviews"

It's because many, if not most people diagnosed with fibromyalgia have ME/CFS. Just that they are referred to a Rheumatologist, they get diagnosed with FMS. – I


International Study of XMRV in ME/CFS

Re: Article, "Norwegian study finds XMRV in 50 of 80 ME/CFS Patients Tested."

It would be interesting to know more about this new international study that is just commencing. I wonder how one could be part of it. Does anyone know? – T

Note: To date we haven't heard more, though the European Society for ME ( says Dr. Johnsgaard will give information about the Lillestrom results at the Nov 28 XMRV/MLV seminar with Dr. Mikovits in Oslo.


Discounts for the Disabled

FYI, for those who have been officially labeled “disabled” this website may be of use to you. (

There is a [$25 annual] fee. I read about this in the June 2010 Costco magazine ( In the article an example of one discount someone received was when the site owner and his wife moved to smaller home to accommodate his wife’s disability. The county recorder notified them that they were entitled to a property tax discount because the move was to replace the residence of a person with disabilities. – Q


More Reasons to Pay Attention to Food Dyes

Others might be interested in this article suggesting food dyes can cause ‘an unrecognized form of allergy’ in children – and maybe the whole family? ( After Googling on “food dyes and children” my husband and I decided we needed to be much more conscious of dyes in products we eat and drink. – Y


Mixed Responses Regarding Implications of Amydala Retraining

Re: “Can Amygdala Retraining Techniques Improve the Wellbeing of Patient with Chronic Fatigue Syndrome: A Clinical Audit of Subjective Outcomes in a Small Sample."

Those of us with ME/CFS [and fibromyalgia] may have understandably mixed responses to this study, for it could be so easily misused to continue fostering the idea that this illness is a psychiatric condition – and stop research funding into biomedical causes and cures. I follow the studies and do the practices of body scan mindfulness meditation pioneered by Jon Kabat Zinn at U Mass medical school, which sounds quite similar to Gupta's approach, and has been shown in many scientific papers to assist in treatments for pain, prostate cancer, breast cancer, and psoriasis, among other conditions.

But it is not a replacement for biomedical treatment and cure. No one would suggest that research into those diseases is immaterial simply because the patients have received some benefit from this applied body-mind treatment, though that has dogged those of us with ME/CFS for 20 years.

Let's hope our advocates, researchers, CDC and NIH have learned better in those years, too, and continue to pursue complex multisystem biomedical factors as well.

I also hope that this study will follow up with the participants 6 months, 1 year, 2 years, etc. from now to learn if those who have or are planning to return to work are able to maintain the gains they perceive right now, if and to what extent they experience relapse. A few notions here deserve clarification, such as "80% of pre-illness activity."

This brings up something that would be helpful not just in this study: a common ability/disability scale employed by all researchers. How ill were they? (Unable to work, socialize, exercise, participate in family gatherings, care for their homes, themselves? Or some but not all of those?) Does 80% of pre-illness activity mean a 40 hour work week instead of the 50 hours they used to work? Or 24 hours instead of 40? Running 3 miles instead of 4? Or walking instead of running? Hosting two family holidays for 15 people instead of 3 a year, and being able to go on vacation without relapse? – C


My Sure-Fire Nontoxic Way to Get Rid of Cockroaches

I take boric acid and peanut butter, make a paste with it, and put it in caps from milk bottles or any other caps you have handy. I put it behind everything in the house, from kitchen to bedrooms/library. I have a library of over 10,000 books, can't afford roaches!

It works like a charm, the peanut butter draws them and the boric acid kills them. I have not had a roach (except for those big outdoor kind now and then) for a good 30 years in my house! But I change the caps with fresh peanut butter and boric acid about every six months. Just be sure your pets can't get to it. I do not believe it’s harmful to animals. Good luck! – S

Note: We looked up boric acid and learned that if ingested it appears to be "deadly to all insects" including (mixed with different attractive substances, such as sugar) ants, silverfish, termites – and might it be possible, even fleas & bedbugs? Wikipedia says boric acid is generally considered not much more toxic than table salt weight for weight, but can be poisonous if eaten or inhaled in large quantities, so to be safe do not place tasty insect bait where children or pets will find and eat it.


This information has not been reviewed by the FDA. It is generic and anecdotal, and is not meant 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 with your professional healthcare team.

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