Dom's FMS/CFIDS Newsletter
February 10, 2011
A Christian-based newsletter about Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (M.E.) - sharing thoughts, research and experiences.
FIBRO STORY CFIDS STORY INSOMNIA STORY HELPFUL THINGS I USE PREVIOUS NEWSLETTER ARCHIVES
TOPICS IN THIS ISSUE - scroll down to read: 1. READERS WRITE - 2. XMRV SHOCKING - 3. DR. PAUL WHITCOMB - 4. IS FMS A CENTRAL NERVOUS SYSTEM (CNS) OR AUTOIMMUNE DISORDER - 5. LAURA HILLENBRAND (AUTHOR WITH SEVERE CFS) - 6. MALE WITH FIBROMYALGIA - 7. SLEEP - 8. SOYA KEFIR - 9. CANDIDA & METHYLATION CYCLE - 10. MEDICAL RESOURCES - 11. IS YOUR LAPTOP CAUSING YOU TO LOSE SLEEP? - 12. SLEEP DISORDER RUINS PLANS - 13. PEPPERMINT OIL FOR IRRITABLE BOWEL SYNDROME (IBS) - 14. LOW DOSE NALTREXONE (LDN) - 15. LYME DISEASE - 16. CLEAN UP YOUR EMAILS - 17. AMPLIGEN - 18. MONO CAUSED FIBRO
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1. READERS WRITE
"Great receiving your newsletters www.fms-help.com/newsletters.htm again....missed you terribly much!"
"Thank you for the newsletter... it is a great help to me."
"I have had FMS since 2000. I live off pain pills and depression meds. Your story www.fms-help.com/fibro.htm has let me know there is some help!!"
"Thank you for your ongoing faithful work in helping others."
2. XMRV SHOCKING
From a reader--
"This xrmv story www.fms-help.com/012811.htm (Topic 3) is truly shocking!!!! We are use to being lied to...some of us are luckier than others....we know the story behind the story.... Thanks for keeping us up to date!!"
3. DR. PAUL WHITCOMB
From a reader--
"http://www.naturalnews.com/008526_fibromyalgia_chiropractic_care.html - Dr. Paul Whitcomb discusses chiropractic care for fibromyalgia. I am interested to know if there are people that has tried his procedure at his facility...and found it beneficial...It sounds too good to be true!?"
FROM DOM: Dr. Whitcomb lost his license a couple of years ago. FYI, his son threatened to sue me for posting some negative comments from readers who had been to his clinic, so I removed them from my 2005 newsletters. You can read about Dr. Whitcomb at http://fibrofriends.typepad.com/fibro_friends/dr_paul_whitcomb/ and http://www.casewatch.org/board/chiro/whitcomb/complaint.shtml.
4. IS FMS A CENTRAL NERVOUS SYSTEM (CNS) OR AUTOIMMUNE DISORDER
From a reader--
"Re: question at www.fms-help.com/020511.htm, Topic 10) - I believe this is a neuro immune disorder. I think the neuro part is where our nervous system is attacked by a virus or bacteria. I don’t think it is autoimmune where your body is attacking itself ( like lupus, RA, etc). I think the immune part is having a weakened immune system."
FROM DOM: Excellent answer! If you want to compare symptoms, my fibromyalgia story is at www.fms-help.com/fibro.htm and my chronic fatigue story is at www.fms-help.com/fatigue.htm.
5. LAURA HILLENBRAND (AUTHOR WITH SEVERE CFS)
From a reader--
"I sent you the NY Times link [see www.fms-help.com/020511.htm, Topics 15 & 16] but did not mention there were several comments after the article where readers shared their experiences; heart-wrenching as expected but always a reminder for me that I'm not alone."
FROM DOM: YES! The readers' comments below the articles were wonderful! Many who have CFS felt validated, and those who didn't understand it, finally did.
6. MALE WITH FIBROMYALGIA
From a reader--
"I am a male in my mid-20's diagnosed as having a pretty bad case of CFS, Fibromyalgia, and Depression. I was energetic, happy, and on top of the world when my problems started about two years ago. Since then, my life has been a living hell as some days I can barely get out of bed."
FROM DOM: See my MEN WITH FIBRO page at www.fms-help.com/men.htm, and also a list of things I use that help me be more functional www.fms-help.com/what.htm.
7. SLEEP
From a reader--
"Sleep is my biggest problem. I sleep a lot but never get relief from the fatigue due to constant awakenings and no deep sleep."
FROM DOM: I'm sure most readers can relate to this problem! Insomnia will wreck your immune system. I have had a severe sleep disorder since I was 16. See my insomnia story at www.fms-help.com/insomnia.htm and things I tried for sleep at www.fms-help.com/sleep.htm. For a list of what I use now, see www.fms-help.com/what.htm.
8. SOYA KEFIR
From a reader--
"SOYA KEFIR – IMPLICATIONS FOR ME/CFS AND FM – UPDATE - Dr. Kubow et al of the School of Dietetics and Human Nutrition, McGill University, Montreal wrote in our Fall 2008 and Fall 2009 issues of QUEST on the implications of Soya Kefir on CFS and Fibromyalgia pain. Dr. Kubow advises that The Wykanta site no longer is selling Soya Kefir. Please direct your enquiries to:
Stomo-phlebo
Centre Stomo-phlebo Montreal, 3545, Berri, Montreal, QC H2L 4G3 Canada
Delivery can be made to the pharmacy of your choice.
Telephone: 1-800-823.7573
If you live in the U.S.A. or elsewhere, please contact Stomo-phlebo at info@stomophlebo.com.
Soya Kefir is a patent-pending powdered extract of a soy-based Kefir drink newly developed by KCLM Research that has shown remarkable improvements in clinical studies of individuals suffering from pain and fatigue. It is formulated to concentrate the bioactive components of Kefir in an easily consumable form.
Ed. Note: For more information or questions on Soy Kefir, please contact KCLM Research in Nutrition or call at 1-877-693-1121 or visit www.soya-kefir.com]"
FROM DOM: A lot of fibromites have soy allergies, so I don't know how effective Soya Kefit is, but everyone is different. I use a probiotic daily (acidophilus). It's on my list at www.fms-help.com/what.htm.
9. CANDIDA & METHYLATION CYCLE
From a male reader--
"Below are some links I think you might find interesting. It sums up allot of info I have previously either found in my own research or discovered through observing my own symptoms and treatments. I have FMS/CFS. I have tested positive for XMRV, Chlamydia Pneumoniae, and Mycoplasma. Now Candida Yeast has been the hard one to prove and the only test that showed me anything was an Organic Acid Test done at the Great Planes Lab. For me Candida is a major factor. Once I stopped listening to the doctors, started listening to by body, and started treating Candida I have seen drastic improvement. The diet is so important. NO sugar, carbs, grains, vinegar, peanuts, mushrooms, all dairy, and many types of teas. I suspect these foods may feed mycoplasma as well.
11. IS YOUR LAPTOP CAUSING YOU TO LOSE SLEEP?
From a reader--
12. SLEEP DISORDER RUINS PLANS
From a reader--
"Today is a good example of this crappy FMS. I slept too late yesterday, and so did not sleep well last night. But today I had planned at 10:30 to go to a local church for a luncheon, but I am feeling tired and it's 8:00 am. By 10:30 am I'd be too exhausted to even go anywhere. I have friends who say that if they only sleep from say 10:00 pm to 1:45 am like I did last night, they can still do some things in the morning and early afternoon--but they do not have FMS. I just will have to miss my luncheon, but as this luncheon only happens 5 times a year that's annoying. But if I'd go, I'd be so groggy....etc."
FROM DOM: My sympathies. Been there, done that. My insomnia story is at www.fms-help.com/insomnia.htm. Fortunately, I am managed better now for sleep than ever before in the past 40+ years www.fms-help.com/what.htm.
13. PEPPERMINT OIL FOR IRRITABLE BOWEL SYNDROME (IBS)
NEW YORK TIMES
January 21, 2011, 1:16 pm
More than a third of American adults use some form of complementary or alternative medicine, according to a government report. Natural remedies have an obvious appeal, but how do you know which ones to choose and whether the claims are backed by science? In this occasional series, Anahad O’Connor, the New York Times “Really?” columnist, explores the claims and the science behind alternative remedies that you may want to consider for your family medicine cabinet.
The Remedy: Peppermint oil.
The Claim: It relieves symptoms of irritable bowel syndrome.
The Science: The symptoms — abdominal pain, bloating and frequent trips to the bathroom — sound like a bad case of food poisoning. But for millions of Americans with irritable bowel syndrome, they are a daily reality.
By some estimates, the condition strikes as many as one in five adults, and it can be difficult to treat. Many patients cycle through prescription drugs, fiber supplements, laxatives and even cognitive behavioral therapy. But for those looking for a natural alternative, peppermint oil may be an option. A cross between watermint and spearmint, the peppermint plant has been used for centuries as an herbal remedy. It is thought to have the ability to relieve some gastrointestinal problems by blocking the flow of calcium into muscle cells in the intestines, which in turn reduces muscle contractions.
In a report financed by the American College of Gastroenterology and published in the journal BMJ, in 2008 scientists conducted an analysis of previous studies comparing peppermint oil with placebo in about 400 patients. Ultimately, they found that only 26 percent of patients treated with peppermint oil — typically administered twice daily in capsule form, for a period of one to three months — continued to show symptoms of I.B.S. after treatment, compared with 65 percent of those who were given placebo. The scientists concluded that the evidence was compelling enough that more studies should be conducted, and that in the interim, “current national guidelines for the management of the condition should be updated to include these data.”
To see the full report: http://well.blogs.nytimes.com/2011/01/21/remedies-peppermint-oil-for-irritable-bowel/
FROM DOM: I use therapeutic grade essential oils for relieving various miseries in my daily life. Read my favorites list at www.fms-help.com/oilsstore.htm - this page also has the link to my essential oils store.
14. LOW DOSE NALTREXONE (LDN)
From a reader--
"Please see the following from Dr Tom Gilhooly re the above as it mentions Fibromyalgia--
I have been involved with LDN prescribing for seven years and one of the reasons I was happy to prescribe this low dose version of the drug naltrexone, was my long term experience in addiction medicine. I have used full strength naltrexone as an addiction treatment for over 20 years. Our practice still provides medical cover for four addiction services which brings me into daily contact with patients with an addiction problem.
On occasion there are patients in the addiction services who would also be suitable for the immune-regulating properties of low dose naltrexone. I have now seen several patients with fibromyalgia who claim that the use of illicit drugs such as heroin was principally self medication for pain relief. Fibromyalgia is a well recognised medical condition but the management of this is difficult and it is certainly feasible that some patients would become disillusioned with standard medical treatments and seek their own solutions. Heroin may be a nightmare drug in many ways but it does provide very good pain relief. Knowing both the difficulty in treating fibromyalgia and the power of heroin, it was not surprising to find a number of patients who had decided to use this as their treatment of choice. This combination does also present a unique treatment opportunity. If the patient can be successfully detoxed from the opiates, they could potentially use LDN as both an immune modulating treatment and as an opiate blocker.
Naltrexone is an equal mixture of right and left handed molecules each with different actions. The right handed molecules, dexoLDN, act as opiate blockers occupying the opiate receptors without stimulating them. This is known as an opiate antagonist activity and in low doses it provokes an increase in natural opiates known as endorphins. It has been proposed that this is the mechanism of action for LDN and indeed has been used by some clinicians as an addiction treatment, as the increase in endorphins could reduce the craving for opiate drugs. The left handed molecule LevoLDN, has been shown to have direct immune modulating effects. This is the most likely mode of action in immune related conditions such as multiple sclerosis and fibromyalgia. The mode of action in addiction patients is almost certainly from the dexo portion of naltrexone where the opiate receptors are completely blocked, preventing heroin or other drugs from working. The problem with naltrexone as an addiction treatment is that the opiate blockade also blocks the activity of endorphins which often leaves the patients feeling flat and sometimes depressed which leads to poor compliance and retention in treatment.
In patients with both opiate addiction and an immune related condition, LDN has a unique double action which can be utilised if the patient wants to detox from opiates. I recently had an opportunity to treat a patient with both fibromyalgia and heroin addiction. They were keen to detox from heroin and also to try this new treatment for fibromyalgia. A recent double blind study of LDN in Fibromyalgia carried out by Jarred Younger in Stanford University has shown improvements in both pain and fatigue. The patient was an inpatient in one of the drug centres and we had the opportunity to detoxify them from opiates and have a four day gap before starting the LDN. This gap is vital as any residual opiates in the system would be displaced by even the 1mg dose of naltrexone. I have tried this in the community and it has backfired as the patients were not completely honest about their opiate use which led to severe withdrawal symptoms. Fortunately, on this occasion we were able to verify the opiate-free period and things went smoothly. Not only did they manage to start LDN successfully, they also declared that their first night on LDN was the best night's sleep they had had for 16 years! The patient now has a new and hopefully effectively treatment for LDN, and they also have an opiate-blocking drug which will prevent opiate abuse. - Jayne Crocker - www.LDNNow.com - Dr Chris Steele MBE, talking about LDN - LDNNow are a political/pressure group of individuals dedicated to getting Low Dose Naltrexone (LDN) accepted into modern medicine and trialled for the myriad of uses it shows benefit for."
FROM DOM: I have reported on LDN (low dose naltrexone) in several past newsletters www.fms-help.com/newsletters.htm - use the Google box at the end of this page to search. My other thought about immune modulation is the immune balancing powder that I used for 8-1/2 years. This is a safe, non-drug alternative that does not interfere with any meds you may be taking. Write dombush@bellsouth.net for info.
15. LYME DISEASE
From a reader--
"I have Lyme Disease and have had it for about 8 years. I need a doctor badly as I am developing large knots on my wrists (soft tissue) that are beginining to affect me with every day work around the house as well as writing and typing. They are extremely painful, in addition to all my other symptoms. Do you know of any really good Lyme-literate doctors in my area? Any help would be very much appreciated."
FROM DOM: Many symptoms of FMS are also symptoms of Lyme disease. Here's a place to find a Lyme-literate doctor: http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74.
16. CLEAN UP YOUR EMAILS
FROM DOM: Are you tired of those >>>> marks in forwarded emails, but want to pass along the info to friends? Download EmailStripper for free from http://www.papercut.biz/emailStripper.htm. I use it all the time to prepare this newsletter.
17. AMPLIGEN
From a reader--
"I was wondering exactly what you use for sleep now. My situation is an unbelievable living nightmare. At this point I just don't know where to turn. If I take ANY meds for sleep I get a severe hangover (not groggy) but sick flu-like feeling for the whole next day accompanied by sometimes severe headaches and vomiting. If I don't get at least 7 or more hours of sleep I can barely make it from the bed to the couch! First I guess I should tell you my CFIDS symptoms. I became ill over 25 years ago. I have what feels like a swollen brain, deep ear pain, severe unwell flu-like viral feeling through my whole body, sore throats, tender and sore lymph nodes, headaches, been hit my a mac truck fatigue, severe drug intolerance, severe sleep disorder, fibromyalgia, joint pain, and the list goes on. I have tried every drug known to man for sleep and CFIDS. I have even been in the ampligen study many years ago and the valcyte study that made me worse. The good ole docs have put me through every test there is. So that is my situation. You sound like your situation is manageable. I am mostly house-ridden with no hope for improvement. I have gotten worse as the years go by. Yes I have prayed, done the natural route too. I try the positive thinking but it's hard when your life has been taken away. I have tried some or all of the natural sleep aids. I didn't have any luck with those either. Have you talked with anyone this sick with this disease? I don't know how I can make it through each day. It's rough! The only hope is ampligen approval or a treatment for the viral part of it or immune treatment. But how much longer must I wait? I am [in my late 50's]. I may die without having a chance to live! No, I'm not depressed from anything but this illness. There are so many things I want to do!"
FROM DOM: I can sure empathize with this reader. I lived like this for years! I am 59. Thankfully, I am now "managed" fairly well for my FMS/CFIDS (not "cured"). A list of things I use is at www.fms-help.com/what.htm. It has been a long, long journey (29 years) since I became ill in June of 1982 www.fms-help.com/fibro.htm. Each of us is unique in what might help us. See Topic 5 above about Laura Hillenbrand - I think this reader will find commfort in her CFS story! Sometimes just knowing that someone else has experienced what we have is a comfort! To learn more about ampligen (mentioned in past newsletters), use the Google box at the end of this page.
18. MONO CAUSED FIBRO
From a reader--
"I read your 100 tips for Fibromyalgia patients www.fms-help.com/tips.htm. I have had fibromyalgia for 26 years. They think I got it after having Mononucleosis when I was 21."
FROM DOM: I fully believe FMS/CFIDS is a viral disorder. I have had FMS since June 1982 (I was 30 at the time and working in a law office in Gainvesille, FL) www.fms-help.com/fibro.htm. I developed CFIDS 5 years later in 1987 www.fms-help.com/fatigue.htm after a lengthy viral illness. I am now 59 and managed better for my symptoms than ever before. I still have to watch my stress levels very carefully, but I am functioning again (read: working). A list of things I use is at www.fms-help.com/what.htm. My circadian rhythm is still out of sync with the rest of the world, but that's okay with me, because I have a job that accomodates it and set my own hours. I have learned to say NO to things that will push me over the edge again, even if it causes social misunderstanding. I try to brace myself for criticism, because people truly don't understand the devastating nature of this illness and never will unless they have FMS/CFIDS themselves. As a Type A workaholic, I am pretty sure that I would not be very sympathetic with people who have these strange symptoms, so perhaps that's why God let me experience it - so that I would be more compassionate toward those who are weak.
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Your fibro friend,
Dominie Bush
100 Tips for Coping with Fibromyalgia &
Insomnia
II Corinthians 1: 4 - "[God] Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God." Visit Dominie's FMS/CFIDS Homepage at www.fms-help.com for Fibromyalgia and Chronic Fatigue Syndrome sufferers and their families.
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DISCLAIMER: I am not a medical doctor. I am a fibromyalgia / chronic fatigue syndrome survivor. The purpose of this website is not to diagnose or cure any disease or malady, but is presented as food for thought. This information cannot take the place of professional medical advice. Any attempt to diagnose and treat an illness should come under the direction of a physician. No guarantees are made regarding any of the information in this website.
