From Our Readers - Comments & Suggestions 04-14-10
April 14, 2010
Witch Hunt of Dr. Sarah Myhill UK by General Medical Council
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 (www.drmyhill.co.uk). 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 - www.ipetitions.com/petition/witchhuntofdrsarahmyhill/. 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 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.
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 has been using a new DNA test for early Lyme detection for 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.]
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
Great Glutathione Article I Found Online
Here’s a link to an article by Dr. Mark Hyman on glutathione (“Glutathione: The Mother of All Antioxidants”) that I thought was really important and explains in a simple way why Dr. Cheney, Rich van K, Dr. Teitelbaum, Dr. Myhill, and others all think glutathione is especially important for ME/CFS patients. This article explains why it’s important, and gives tips on raising our bodies’ glutathione production with foods and supplements, and exercise. - D
New Help for Post-Shingles Neuropathic Pain
Re: the article "Capsaicin patch for long-lasting post-shingles pain relief now available"
Thanks for posting this article! I sure intend to get my doctor to try this, because I have really bad pain from shingles. I have CFIDS and fibro, and seem to be one of those who gets it more than once. - K
Low Vitamin D & Leaky Bladder
Re: "Vitamin D and Pelvic Floor Disorders in Women"
My ears perked up when I saw this article on low vitamin D and urine leaking problems. I don’t know if there’s any connection, but when my doctor tested my vitamin D last week he said I was seriously low. And I’ve been having some urine accidents when I cough or wait a little too long (too young for this!). I’m hoping that getting my D up where it needs to be might help here. I'll let y'all know. - W
Calories Burned with Different Activities?
Q: How do I find out how many calories are burned with different types of exercise? - G
A: We found a really good Exercise & Activity calory calculator in our Weight Loss subsite. You select the activity (choose from 8 speeds & types of walking, for example, including walking with crutches), then enter your weight, and the time spent, and it will give you calories burned! There are also a few activities of daily life, like light cleaning, meal preparation, and sweeping.
Looking for ME/CFS Recovery Story
Q: There was a story within the last few months of a physician that had contracted Chronic Fatigue Syndrome and his story of recovery. I save most all of my ProHealth newsletters, but have been unable to locate this story and it was very inspiring to me. I also wanted to send to friends and family and his description of symptoms was very well written. It wasn't a main 'headline' article. I believe he may have been a physician at Stanford? Please send if available. Important. - A
A: Probably you're referring to a story by Bruce Campbell, PhD - "Rebuilding Life in the Face of Loss." Dr. Campbell directs the nonprofit CFIDS & Fibromyalgia Self-Help program - including moderated online discussion courses and a large free online library of helpful articles (www.cfidsselfhelp.org/library). If you're interested in joining the Summer Self-Help Class, registration closes May 31 and classes start June 6.
If you ever want to find an old ProHealth newsletter, go to www.ProHealth.com; look up at the top in the SUBSCRIBE TO OUR FREE NEWSLETTERS box; and "click here to preview." That will take you to our HealthWatch newsletter archives. In the pulldown box, select which archive you want to see (ME/CFS, FM, or Wellness). There's a link for each back issue.
More on Possible FDA Approval of Xyrem® (Sodium Oxybate) for FM Sleep, etc.
Re: Letters expressing Strong Opinions on Possible Xyrem Approval
• It will be great if and when Xyrem is approved for fibromyalgia. I have used it for some time now. It was the only drug that really helped without all those awful side effects found in all those other drugs that are supposed to help. What I don't understand is the cost. Why would something that was sold in health food stores for such a small amount of money before being banned, now cost upwards of $1500 (depending on your dose)? You would think that after being on the shelf for so many years that the cost would not have tripled in the last 4 years alone. Part of it might be that Jazz Pharmaceuticals doesn't have any competition, being the only manufacturer of sodium oxybate, and I know they have had intensive clinical trials leading to the FDA application for approval, but really, tripling the cost of a drug in only 4 years time. Something is wrong here. Perhaps if drug companies didn't try to attain billions in profits, so many more people could be helped by them. - P
• My sleep doctor prescribed Xyrem, and taking it was one of the worst experiences of my life. I had a weird reaction and was unable to sleep for days. I slept no more than 2-3 hours per night and gave up after a week of waiting for the drug to help me. Users should be aware of this possible side effect. - B
HIV Drugs for XMRV?
Re: “Raltegravir Is a Potent Inhibitor of XMRV, a Virus Implicated in Prostate Cencer and Cronic Fatigue”
• That out of 28 HIV drugs, 4 cause XMRV to not replicate...that is huge… I do think that the focus will be on the nation’s blood and the prostate cancer before it dwindles down to us (except among our own researchers).- S
• For me, it’s a done deal. As far as I’m concerned, XMRV causes CFS. I was bedridden and suicidal 2 weeks ago, after almost 18 yrs of this disease. I took AZT 300 mg and now, I am up and about, about 25%-30% better. PLEASE do not take this drug without being followed by an infectious disease doctor. - L
Canadian Ban on ME/CFS Blood Donations Raises Questions
• About … Canada banning blood donations from chronic fatigue people. That raises a lot of questions:
- Is it okay for Fibromyalgia people to donate blood?
- Does the Red Cross know something about XMRV that they are not telling us?
- How would they know if someone is "CFS positive"? (Since most of us don't ever get a real diagnosis, there is no test for it.)
- And in general, what about XMRV in the general population; those millions of people who do NOT have CFS but carry the XMRV - won't they be contaminating the blood supply?
- And therefore, should we just assume that the blood supply is contaminated? Should healthy people refuse to get blood transfusions unless they are going to die for sure without it? - S
• The Red Cross probably doesn't know a lot that they're not telling us, just erring on the side of caution, which is always a good idea. They would only know if someone is ME/CFS positive if a person told them so, pretty much as with any other disease. They would probably just add this to the list of people they don't want to donate blood for fear of contamination. On the plus side, it raises a certain amount of awareness as to the seriousness of this disease, don't you think? - M
Photos for Reference - Lyme Ticks in Different Stages, and Rashes
Ticks: This one in particular is really good, as it shows what they look like from nymph stage to adult to bloated adult. I have pulled so many off my dogs over the years before I knew about Lyme... http://media.wiley.com/assets/152/38/0-7645-5318-6_000300.jpg
Rash photo references:
• Lyme: www.lymediseaseassociation.org/PhotoAlbum_Rash.html, and www.lib.uiowa.edu/hardin/md/lymediseasepictures.html
• Bartonella: www.lymediseaseassociation.org/PhotoAlbum_RashBart.html
• Others: www.lymediseaseassociation.org/PhotoAlbum_RashOther.html
"Healthy Fat Cocktail" to Support Cells & Mitochondria
Re: Article on NT Factor "Repair Damaged Mitochondria and Reduce Fatigue"
This idea of replenishing the right lipids/essential fatty acids to support cell membranes is interesting. Dr. Myhill says she’s experimenting with healthy recipes (made in a juicer) to deliver healthy fats & oils in the best mix for membranes outside and inside the cells. She suggests a 4 to 1 mix of omega 6 to 3, and lists the 6-to-3 ratios in different plant oils. Hemp oil by itself is closest to 4:1, but some people have allergy problems with it. - N
Note: This information has not been evaluated by the FDA. It is generic and anecdotal, and is not meant to diagnose, prevent, 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 in collaboration with your professional healthcare team.
ProHealth offers a wide range of nutritional supplements for optimal health.*
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