From Our Readers – Comments & Suggestions 12-09-09

Great Free Educational Videos for Caregivers

I care for my mother, who had a brain tumor, and this new site – – really helped me. They call it “a visual education center for family caregivers.” I found a lot of videos using real caregivers and patients who talk about everyday situations. There are videos on stroke and Alzheimers, and topics like falling, fear, infection control and lifting. – M

Info on Low Dose Naltrexone for Multiple Sclerosis

I’ve been doing a lot of research for myself on Low Dose Naltrexone for OA and FM, and finding many with Lyme, multiple sclerosis, and other health issues are benefiting with LDN therapy… I just watched a couple of YouTubes of Mary Boyle Bradley, who is an LDN advocate with major personal experiences with MS. She wrote the new book: Up the Creek with a Paddle: Beat MS and All Autoimmune Disorders with Low Dose Naltrexone. Very inspirational videos – [e.g., Several covering her presentation at the second LDN Conference at the National Institutes of Health.] – J


New, Better Lyme Test?

Hopefully. See “2-Tiered Antibody Testing for Early and Late Lyme Disease Using Only an Immunoglobulin G Blot with the Addition of a VlsE Band as the Second-Tier Test.” [About a new test that combines the IgM and IgG antibody tests and could work better for early stage testing.] There is a good explanation of Lyme testing at – V


Happy Dance Video for Breast Cancer Awareness

A friend of mine sent me this (Pink Glove Dance Video) in an email from one of the Medline Reps who makes the new surgical pink gloves. It’s a Breast Cancer Awareness video made at a hospital. It’s so genuine – and, well – it just makes me happy to watch it. Maybe it will bring a smile to your day as well. – C


Note of Caution on Silver Supplements

Here’s a link I found on ProHealth’s Alternative Therapies Message Board – it’s a Harvard Medical School warning about taking colloidal silver supplements. Just FYI. – E


ME/CFS Validation on Good Morning America

Dr. Donnica Moore stated very clearly on “Good Morning America” that the XMRV retrovirus discovery is “a game changer” for neuroimmune disease patients, and that people can no longer dismiss CFS as all in our heads. I’m sending this link to my unbelieving family. Maybe now they’ll believe! – P


Help Finding Doctors Who Treat Chronic Pain – Worldwide

When I was searching for pain sites I found It has an international Physician’s Location Directory that helped me identify some doctors to check out in my area. There’s no info on specialties, titles, etc. so it’s up to you to do the vetting. – K


Recommend This Book on Aging

Have you read anything by Joan Chittister? I bought her book called The Gift of Years – Growing Older Gracefully and it’s really wonderful. She’s a Catholic nun, but writes more from a spiritual quest perspective honoring all religions it seems, and this book is so good. I’m setting up a reading time [at a local elderly daycare center], as I thought some people there might enjoy hearing it. Check it out on Amazon, I think they let you peek in the book! – S


Could This Be Post-Injury Fibro?

Q: I had a car accident nearly three years ago and have since been suffering with lower back pain, shoulder pain, acute left arm pain, pins and needles in left arm, hand, leg and foot, fatigue, regular disturbed sleep – and wondered if this is Fibromyalgia. I need a diagnosis to know where to start to try and feel better as I have two small boys aged 4 and 2-1/2 years old and a loving husband who can’t bear my suffering and misery as I am only 32 years of age, can anyone give advice on what I can do to improve my everyday life? – D

A: According to Fibro expert Mark Pellegrino, MD: “D first needs a diagnosis, such as post-traumatic fibromyalgia or whiplash-associated disorders or both or not. She may be right about the fibro, but it has to become “official” and then the proper treatment can follow. If possible I recommend that she see a physiatrist (no bias on my part at all….).”

Note: Dr. Pellegrino is an MD with a specialty in physiatry. See the American Academy of Physical Medicine & Rehabilitation Website to locate MDs who are Physiatrists – via a linked listing by state, city and Zip code, at To learn more about this specialty, read Dr. Pellegrino’s article, “Physical Medicine & Rehabilitation (Physiatry) – A specialty particularly suited to diagnose and treat fibromyalgia.”


The Dec 3 Dr. Oz Show on CFS & XMRV

Re: Comments on a YouTube video of the Oz Show segment

I have a good feeling about this. Although they didn’t describe in detail how debilitating CFS is they did show how this retrovirus gets into our cells and doesn’t leave. The woman doctor on there was good and the patient was very good I thought. I think it was less than 10 minutes long, but I’m so hopeful that now we will be recognized as ill and not crazy. I wish he had been able to devote the whole show to this. But I guess after all this time beggars can’t be choosers and this was a start. I only hope that every doctor who doesn’t believe in this disease can watch this… – T

It was Great! Until the very end when they brought up Exercise and how important it is for us? It’s like they kinda get it but ummm NOT! Although he did that, I do believe that the show will scare the bejesus out of millions of people. I guess time will tell. Also the woman they had on there has tested positive for the virus; she said she was in a group of people tested. Could these peeps be from the WPI institute? – K


Where to Get Tests for the XMRV Virus

Q: How can I get tested for XMRV?

A: That we know of so far, two US labs are offering tests directly to patients by mail. They are:

1. VIP Diagnostics Lab in Reno
2. Cooperative Diagnostics LLC in South Carolina

Note: Reflecting the early stage of the research, the labs emphasize that these tests are not meant to be diagnostic and are not to be taken as evidence of presence or absence of a disease.


Atypical MS and XMRV

Many MS patients have, or have had, “probable,” “possible” or “Atypical” MS diagnoses in the course of our years of testing and history. MS is also known as “encephalomyelitis disseminate” and is very close (if not often identical) in presentation to “myalgic encephalomyelitis.”

Those of us who receive an Atypical MS dx do so because we have documented clinical abnormalities and neurological deficits that are highly suggestive of MS, but that do not fully fit the current diagnostic criteria.

The Whittemore-Peterson Institute is also including Atypical MS in their research, and in [the recent] CFSAC meeting, Dr. Peterson’s research did show that 3 out of the 3 Atypical MS patients tested did show positive for active XMRV. – C


Chaplain’s Words Helped Me Rethink My Anger

Dr. Katherine Piderman is staff chaplain at the Mayo Clinic in Rochester. Reading her insights on “Forgiveness: How to let go of grudges and bitterness” helped me to stop defining my life by how I have been hurt. That was like a whole foreign way of thinking for me! My hurts seemed so special, but then I started noticing how some other people who were hurt pretty bad still were getting past it & having a better life. – N

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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