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From Our Readers – Comments & Suggestions 09-28-11

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Several Studies Provide a Fix on the Optimal Vitamin D Level

“Why should you keep your vitamin D level around 50 ng/ml? Four different sources, using four different rationales, and four different lines of reasoning, all lead to the same conclusion.”

Vitamin D Council Newsletter, Sep 19, 2011 (

Note: According to the rest of this article, the four studies included: 1) our closest primate relatives – chimpanzees – living in the wild average 40-60 ng/ml; 2) lifeguards average 40-60 ng/ml; 3) nursing women providing generous vitamin D in breast milk average 40-60 ng/ml; and roofers who get lots of summer sun averaged 40-60 ng/ml both summer and winter. Presumably because their bodies stored enough excess D in fat and muscle in summer to sustain levels in the winter months, and when enough is stored, the body “turns on enzymatic machinery to get rid of excess.”


Is Increasing Physician Interest in FM Drug-Driven?

Re: “Listening to Lyrica: Contested Illnesses and Pharmaceutical Determinism”

This is a great example of drug driven medicine. The presence of a real drug defines the disease. INCREDIBLE! One of the main causes of iatrogenic disease [harm caused inadvertently by medical diagnosis/treatment].

Imagine if you could go to your doctor and ask them advice on how to prevent diseases for which you suspect you are at risk. The response would be totally inadequate. On the whole, doctors are very bad at prophylaxis and health advice. That is because “health” is outside the drug box. If you go to your doctor and tell them what you want, as I did recently you might get an angry reaction. (I wanted a prescription for vitamin D because here in NZ, our “wise” government dept. of health has deemed vitamin D a restricted medicine). The doctor knows nothing of ME/CFS and certainly thinks vitamin D is only needed for osteoporosis.

Doctors want you to know nothing, they don’t want you to consult WebMD or the Internet in general. This situation is dire. Some doctors I know do take a role in educating their patients; they recommend the Internet but they are a great minority. It is time this changed. Educating people about their health and what to do to prevent disease would reduce iatrogenic illness and death as well as reduce the massively rising “health budget”. – I


Green Tea EGCG and Fibroids?

Q: I have fibroids and have read recently that a new test is being trialed in the UK where I live. I try to use other methods than surgery or what they are trying at the moment – laser zapping. The newspapers reporting the trials also said that research had proven that epigallocatechin gallate in green tea [EGCG] has helped to shrink and stop the growth of these tumours. I have ordered some from your site, but I noticed that your description does not show any news about this or on the research section. Just wondered why. I still am going to give it a try as I am desperate. Your comments please. – S

A: Thank you for your intriguing question. There is indeed research pointing to green tea EGCG’s potential as a support versus early-stage fibroids – enough to make it a sensible consideration for someone with fibroid problems.

Specifically, we found this report on 2 studies in 2010 at Meharry Medical College (“Green Tea EGCG: A Natural Treatment for Uterine Fibroids”), which concludes that “EGCG, an extract from green tea, may induce apoptosis (cell death) and reduce proliferation of uterine fibroid cells by affecting gene expression…. Though unlikely to shrink larger developed fibroids to a great extent, it may have a role to play in earlier stages and in prevention of these benign yet troublesome growths.” However, the report also cautiously states that “more research is needed before firm conclusions can be drawn on this topic.”

To read about studies of EGCG and tumour cell growth, see “Health Benefits are Brewing in Green Tea.” Remember, pharmaceutical drugs tend to take over the body’s jobs or address symptoms of problems, while nutritional supplements may provide what the body can use to support its natural functions.


Terrible Itching May Have Been Thyroid Medication

My father suffered for months from a fierce itch which I did my best to research because his doctor was not helpful. His description was … burning itch which was worse at night and felt like something crawling on him. At one point his doctor diagnosed him with scabies and he went through that annoying treatment. He is 89, so the odds of him having contracted scabies were really low. I began to worry he had one of those dreadful conditions that I don’t know whether to believe in or not (morgellons or “bird mites”?).

Nearly a year later I was at a social gathering and overheard a woman talk about an itch that sounded like the one plaguing my father. Her doctor also had her undergo treatment for scabies, but the itch persisted. Finally she went to another doctor who suggested it was a side effect from her thyroid med, which was Levothyroxine (synthetic thyroid). She was switched to Armour and the itch which had nearly driven her mad for months subsided (took two weeks). It turned out that my dad also had been put on Levothyroxine around the same time he started itching. By this time his itch was finally lessening (or he was growing used to it!) and he was afraid to change things. – S


Looking for Fibro Friends & Support? Try

No matter what life limitations you may have, you can find a way to belong and connect through ( You can find area groups, or post a link to start or sponsor a group. Just type in your topic or interest (e.g., fibromyalgia) and the areas you’re looking in – zip code, town, or distance from you. This will pull up information about groups and their events. I found an invitation to join a new fibro book club; another one for 50-ish people with ‘invisible’ conditions wishing to meet new friends; a bring-your-dog-for-fun park meetup group; and a large ‘Game Night Club’ group who get together to play board games – right under my nose. And you can get a weekly calendar email for news and reminders. – J


Consumer and Physician Guides Compare Benefits & Risks of GERD Treatments

“New plain-language publications from the U.S. Department of Health and Human Services’ (HHS) Agency for Healthcare Research and Quality (AHRQ) compare the benefits and risks of treatments for gastroesophageal reflux disease (GERD), a digestive condition that affects millions of Americans and can be treated with medications or surgery. The publications are based on an updated evidence report also released today.”

Agency for Healthcare Research & Quality news release, Sep 26

Note: To read the report on acid reflux (heartburn) medication research for consumers, click HERE.  And scroll down to listen to or download the audio version. It explains GERD, and explains how Rx medication, surgery, and OTC drug treatments work, as well as the side effects & research findings for each.


The Search for Fibro-Friendly Underwear Continues….

Re: “My Search for a Fibromyalgia-Friendly Bra”

Last month HealthCentral chronic pain patient expert Karen Lee Richards wrote about how clothes cause FM patients pain. She received so many comments about attempts to find a bra that doesn’t hurt that they helped motivate her to give that particular search just “one more try” – which produced at least one good idea.



Create a YouTube Presence for Your Support Group and Raise Awareness Too

See what CFS Solutions of West Michigan did at <a target="_blank" href="

“> There’s information about this active group on its Facebook page at!/cfssolutionswm?sk=wall – R


“Broken of Britain” Disability Campaign

The Broken of Britain ( is a non-partisan UK-based disability campaign blog for people with invisible illness and/or physical & mental health conditions, and their families and friends. Our Facebook page is at!/thebrokenofbritain?sk=wall

The Broken of Britain


Supplements that May Help Those with Fibro Fatigue

Re: “Eight Supplements that may help those coping with Fibromyalgia Fatigue” by Karen Lee Richards

I’ve tried all these supplements – for long periods of time – and the only effect they’ve had has been on my wallet. – G

The ProHealth Fibro Energy Formula is a wonderful product as it contains a lot of these recommended supplements such as CoQ10, Alpha-Lipoic Acid, Acetyl-L-Carnitine, 7-Keto DHEA, B-12, B-5, and Panax Ginseng. I love this product and keep a stock of it as I use it every day (and can really notice it if I’ve missed it). – M

Supplements that helped me: The malic acid with magnesium [Ultra ATP+] has changed my life. I feel so much better now that I have been taking it for a few weeks. I have more energy and less muscle & joint pain. And it is very inexpensive. D-Ribose is also an excellent product but a little pricier. I buy it when I have a big project to do and it’s worth it; it really helps provide more energy. – G


ME/CFS Alert Episode 6 – Interview with Andrea Whittemore

In the latest MECFS Alert video [Episode 6], Andrea mentions in the interview with Deborah Waroff that her ME/CFS started in 1988 in Incline Village. She talks about what she has taken, and mentions that she has been taking something new in tablet form that the WPI collaborative docs came up with as a possibility for her. She says she has been taking it for about 18 months and it seems to have begun helping though it’s still premature to name the therapy.

She took IV Ampligen for 8 years, beginning in 2001 but had been getting progressively worse & having seizures. Now she’s better  – down from 8-10 hours a day on oxygen to 1-2 hours, with fewer seizures, and is able to walk again without relying on a wheelchair. – C


Note: This information has not been reviewed by the FDA. It is generic and anecdotal and is not intended to diagnose, prevent, treat, ameliorate or cure any illness, condition 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 team.

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