From Our Readers – Comments & Suggestions 04-21-10

Do You Doubt Yourself About Fibro?

…When I was 16 years old (in the 50’s) and complained to [my doctor] about my severe monthly cramps and all the other horrible symptoms I experienced, he said all of it, including the pain, was just in my head. There was “no such thing” as PMS then! He said I should just relax. (If only he could have felt what I was feeling.)

Well I’ve got news for him! Just because “they” don’t believe it’s real doesn’t make them right and us wrong. Never doubt what your own body is telling you. Who would know better than the one suffering from the condition?

In the beginning of this I did wonder if CFS was real. I don’t know why I have these diseases, what caused them, how to cure them, but one thing I know for SURE is that they are real physical illnesses. I was there when it started and remember that it hit me suddenly and never stopped. The pain and disabling symptoms have slowly worsened over time after an initial small remission in the second year.

I didn’t make myself sick and I cannot make myself well by just willing it to happen, any more than with any other disease. People who doubt this is real will never get it (unless they get it). – G


New Early Lyme Test 100 to 1,000 Times More Sensitive

I read in an email from the Lyme Disease Research Database that Dr. Sing Hang Lee and other doctors at Milford Hospital in Connecticut have been using a new DNA test for early Lyme detection for about a year. They usually order the new test for “patients with Lyme disease-like symptoms.” They published an article on the test [in the April issue of the American Journal of Clinical Pathology]. For those who may not know, it is extremely important to get Lyme infection diagnosed & treated ASAP.

The LDRD’s report says this test is so sensitive it “eliminates the false positives that are problematic in the traditional Lyme tests, specifically the Western Blot and the ELISA…. Patients and physicians interested in information on this DNA test may call George Poole, manager of Milford Medical Laboratory, at 203-876-4496.” – T


Mayo Report on Low Vitamin K & Non-Hodgkin Lymphoma Risk

I just read a Mayo Clinic report that many people they diagnosed with non-Hodgkin lymphoma had diets very low in vitamin K (“Vitamin K May Protect Against Developing Non-Hodgkin Lymphoma”). I was interested because my uncle got non-Hodgkin last year, and he was famous for never eating anything ‘green.’

So I searched and found an article in the ProHealth library on how vitamin K is so important for some immediate-survival jobs (blood clotting) that when you don’t get enough your body will cut the supply going to other long-term survival jobs like bone building and immune function (“A New Vitamin K Analysis Supports the Triage Theory” ). I’m having a big green salad! – H


Healthcare Reform Act Events & Dates in the Next Year

Karen Lee Richards has put together a very helpful explanation of what will take effect, and when, in 2010-2011. For example, as of June 21 people I (who haven’t been able to get insurance because of a pre-existing condition) can now get some through “a temporary high-risk pool.” And folks who fall into the Medicare drug cost doughnut hole this year can get a $250 rebate. (See Health Care Reform Act: Provisions that Take Effect Within the Next Year.) – M


Mail Test Kit for Diabetes & Trial for Those Just Diagnosed

Anyone who’s had a family member with diabetes, or – if you’re like I was and want to know if you might have early signs – you can order a screening test kit from Diabetes TrialNet. You take the kit to a local Dr. or lab to get a blood sample, and send it in for analysis. You can order a kit by e-mailing or calling one of their 20 centers ( in the US, Canada, Finland, UK, and Italy). If you live near one of the centers, you can go there & be screened directly.

Three of the centers (in Connecticut, California, and Colorado) are conducting a special study for people just diagnosed with Type 1 (“Metabolic Control in New Onset Diabetes” ). They’re “testing whether early intensive glucose control – beginning within 7 days of diagnosis & continuing through the first 2 years – will help people retain their own insulin production for a longer period.” – V


How to Be an Advocate for UK Patient Advocate, Dr. Myhill

As many of you will know and love Dr. Myhill and have been greatly helped by her treatment protocol, I thought you would like to know of the witch hunt, and that they are trying to take away her license to practice due to her web site ( A complaint has been made and no patient has been harmed. Please help in our campaign to support her as you may know this is not the first time and we won last time, so let’s support this great Dr., guys. – S

Here is a link to her open letter, explaining how we all can help before April 29. And here is a link to a petition in support of Dr. Myhill – They’ll appreciate comments from all over the world.

Note: ProHealth has consistently found Dr. Myhill to be among the top few clinicians in the world in terms of ME/CFS/FM/MCS patient knowledge, research, education and health support basics – always with a spirit of utmost generosity. In our view she is a truly holistic practitioner, blending a cutting-edge knowledge of nutritional as well as traditional medical science.


Vitamin D Info Explains a Lot

I know there are skeptics out there about the role of D3, but for me it makes perfect sense. I was born to parents who were ill with fibro/CFS and severe RA. I ALWAYS felt the need to just sit in the sun, in fact, each morning I would run out and lie on the hood of my Dad’s brown Chevy Impala and ‘cook’, even at 7am. Then I could function. I never knew why I did this ‘til recently it clicked. I needed the D!

My Dad also told me after suffering years from RA, that one of his SMART docs gave him a script for D3. It changed what was left of his life. In the 70’s, he was considered the worst case of RA and was in all the medical research journals at the time as well as a fixture in the Hospital for Joint Disease in New York. He was also employed by a major [vitamin D-fortified] milk company and wouldn’t dream of consuming it. I feel the same way today. So I must supplement.

…I began to see a naturopath… and the two supps we agreed on were D3 and B12. Both of which changed me overnight… This [article] is a long read, but answers all the questions we WOMEN seem to have… (“Is vitamin D deficiency casting a cloud over your health?”) – M


Views on Fibro & Breast Feeding

Re: “Two Viewpoints on Fibro and Motherhood – The Doctor and the Mother” – specifically Dr. Pellegrino’s observation that most of his FM patients with newborns have turned to bottle feeding, particularly after the first pregnancy, owing to sleep deprivation with associated pain & fatigue, and ability to have the partner more involved in nighttime feedings.

Disappointed…. A Lactation Consultant or La Leche League Leader will be able to help you find ways to provide your baby with the best form of nutrition and keep your own body healthy and comfortable at the same time. Many mothers with many kinds of health challenges have breastfed their babies. Don’t discard the idea of breastfeeding just because of Dr. Pellegrino’s comments, do your own research and make an informed decision about the best choice for you and your family. – F

Didn’t breastfeed, one less fibro aggravator. I was diagnosed with fibro when I was pregnant with my first child at 29. I tried breastfeeding with my first child, and I went into flare up and excruciating pain more than what I had during the third trimester. My baby was extremely hungry and crying and this entire situation created more stress which aggravated the fibro more, to the point I couldn’t hold my baby properly to feed him due to extreme muscle fatigue and pain. The nurse recommended bottle feeding, as my milk had not started production properly and I was not functioning well enough after an induced 14 hr labor. Bottle feeding proved to be easier for me as I could get more sleep and rest, having my husband help with night feeds, and my baby was satiated and settled into a routine quickly. – I


Study Confirms IBS Runs Strongly in Families

The Mayo Clinic is apparently the first to do a big study that gets a hard fix on how often people with IBS also have relatives with IBS. [See “Familial Aggregation of Irritable Bowel Syndrome: A Family Case-Control Study”] They interviewed the living relatives of people with a diagnosis of IBS – and we are three times more likely to have a blood relative with IBS than people without IBS. They didn’t find any differences between male & female frequency, and there’s no connection for husbands/wives of IBS-ers. – L


Cholesterol Problems – Is It “the Sugar, Stupid”?

An article in the April 21 issue of JAMA [“Caloric Sweetener Consumption and Dyslipidemia Among US Adults] by nutrition researchers at Emory University found from a national health & nutrition tracking study that average daily US added sugar consumption is more than 21 teaspoons. I think this means it’s not counting natural sugars in fruits and veggies, etc. They say that’s about 50% more than 30 years ago. The higher-added-sugar consumers had much lower ‘good’ cholesterol and higher triglyceride levels. – W


FM ‘Rehab’ Training Helped In Practical Ways

Re: “An exploratory study of long-term health outcomes following an in-patient multidisciplinary program for people with fibromyalgia syndrome”

This 10-year follow-up after health, coping (and presumably cognitive behavioral?) training didn’t seem able to stop FM pain or need for drugs. But on the plus side it seemed to help with important quality of life factors like social support, anxiety, and paid employment. – P


Canadian Data on FM Patient Comorbidities & Costs

Re: “Clinical and economic characteristics of patients with fibromyalgia syndrome”

The University of Montreal has done an analysis of FM patients’ health and medical service use and costs in Quebec’s provincial health plans that provides some hard facts on the burden FM patients face. The statistics show that more than 87% of 16,010 FM patients in the study had co-morbidities and their average number of comorbidities is 3.8. Average annual doctor visits, 25.1. – K


Helpful Arthritis Today “Supplement Guide”

If you want to know about supplements to consider, the Arthritis Today website has a little Supplements fact sheet. There’s also a Lab Test Guide that can help explain the basic types of arthritis tests. – Y

Note: This information has not been evaluated by the FDA. It is general and anecdotal, and is not meant to prevent, diagnose, treat 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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