For Your Information
CFS/FMS News March April 2003
Chronic Fatigue and Fibromyalgia Support Group
of South West Florida
Meeting Third Saturday of the month, 10:30AM to Noon at the Cape Coral Hospital,
In the 'New Café', 636 Del Prado Boulevard, Cape Coral.
March 15th - Dr. William Dakos - Fort Myers Center of Fibromyalgia, on guaifenesin.
April 19th - Round table discussion.
Handouts on Chronic Fatigue and Fibromyalgia are available at every meeting. A therapist leads round table discussion. Information and support is shared by all. Perfume and scent free due to sensitivities. Programs announced as available.
Newsletters are published every other month.
If you received this newsletter in the mail it means we do not have your e-mail address.
Visit our very own web site at www.CFS-FMS-FL.org !!!!!!! thanks to Ken Schneider.
Roxann Barber
Cape Coral, Florida 33904
Local and Group News
Our meeting for March will be with Dr. William Dakos of the Fort Myers Center of Fibromyalgia, 2017 Maravilla Lane, Fort Myers. 939/7017, discussing his treatment protocol for Fibromyalgia with guaifenesin. In September member Peggy DeWane told us of her experiences with this treatment, and we discovered several other members are currently undergoing treatment with good results so far. It should prove to be a very informative event. For a reminder I am reprinting the article on guaifenesin from the November newsletter.
Our 5-week yoga class for Fibromyalgia has been completed with good results for all. We did so well that the Health and Harmony Center has decided we can start with the regular beginner's class or the gentle yoga for seniors. More on this in the yoga article below.
Awareness Day, May 12th is promoted by the Fibromyalgia groups and now being taken up by some CFIDS, GWS and MCS groups. Activities are designed to make it easy on our energies. We can easily participate with posters, T-shirts, bookmarks and buttons, letter writing and e mailing, and many other activities to stir up publicity in our home town. More below on how you and I can help.
Visit our very own web site at www.CFS-FMS-FL.org !!!!!!! thanks to Ken Schneider.
My praises to whoever thought up SpellCheck!
Love and Hope for All, Roxy Barber
Cape Coral, FL 33904
Reversing Fibromyalgia with Guaifenesin
Reprinted from November meeting
Our March meeting will be with guest speaker Dr. William Dakos of the Fort Myers Center of Fibromyalgia, 2017 Maravilla Lane, Fort Myers. 239/939-7017
Guaifenesin is a drug traditionally used to treat gout and relieve mucous. Dr. Paul St Amand M.D. discovered guaifenesin's use as a treatment for Fibromyalgia. It eliminates excess phosphates, which are believed to build up in tissues and interfere with energy production. This is a lifetime treatment and one stipulation is eliminating all substances containing salicylates.
Thanks to Peggy Dewane for passing this along.
From Dr. St. Amand's book What Your Doctor May NOT Tell You About Fibromyalgia
Guaifenesin is quickly absorbed from the gastrointestinal tract and is rapidly metabolized and excreted in the urine. Guaifenesin is also known to lower uric acid levels. No serious side-effects have been reported. (Physicians' Desk Reference)
The symptoms of Fibromyalgia appear to worsen until the kidneys catch up. The main method for eliminating excess phosphates is through the urine. The mechanism by which Guaifenesin purges the body of phosphate resembles a spigot that drains the kidneys offending substances.
The patients individual pain threshold will usually determine the perceived intensity of the reversing attack. In general, for every two months on Guaifenesin, we will reverse one year of Fibromyalgia.
Guaifenesin…..has one and only one enemy that completely blocks its effectiveness. Its foe is a chemical compound known as salicylate…..salicylates exist both as natural and synthetic compounds. Natural Salicylates are produced by plants. Synthetic salicylates are made in laboratories, such as aspirin.
Some web sites that will give you valuable information on treating Fibromyalgia with Guaifenesin and lists of salicylate-free products:
R. Paul St. Amand, MD and Claudia Marek: www.fibromyalgiatreatment.com
The Guai Group: www.geocities.com
Tesa Marcon: www.netromall.com
From an article in Health Watch Newsletter 2001 Treatment edition, Vol. X, No. 2
“Treating Fibromyalgia With Guaifenesin”, by R. Paul St. Amand, M.D.
“Our hypothesis is that an inherited, abnormal renal retention of phosphate and secondarily calcium, leads to an intracellular excess of both. Cells and their power stations, the mitochondria, malfunction and produce inadequate ATP, the currency of energy. An energy deprivation syndrome develops and affects susceptible, widespread bodily functions.”
“Treatment reverses Fibromyalgia in less time than it took to develop. This accelerated process reproduces previous pain and emotional symptoms, sometimes intensely ….symptoms gradually lessen.”“Salicylate or salicylic acid…..block the effect of guafenesin. No adverse reaction ensues but no benefit is attained.”
The article mentions several products/herbs to avoid when using this treatment. These items are not normally bad for you, but must be avoided if using the guaifenesin treatment. Out of bounds are hair products, skin products, lotions, herbal remedies and vitamins. “ Our warnings do not apply to foods, cooking herbs and spices though they do harbor salicylates. The content is insufficient to block benefits if cumulative, extraneous sources are not added.” Many pain medications, aspirin, (some anti-inflammatories are ok), aloe, ginseng, menthol, almond, grape seed oil, castor oil, camphor, rosemary, geranium, St. John's Wort, rose hips, quercetin, Ben Gay, sunscreens, Pepto-Bismol, Listerine all contain salycilates. This part of the treatment requires a diligent commitment on the part of the patient.
Dr, Amand warns, “Our therapeutic approach is not for the weak of courage….It takes confidence and strength”. Something most of us have in us, and use to survive every day!
Update on Yoga classes
Our special class of Yoga for Fibromyalgia ended with many in the class feeling stronger and more confident. None of the sessions was strenuous and I personally never had sore muscles after. I did however start breathing better and standing easier on my own. (It is hard for me to stand still, my head, and neck and shoulders feel so heavy, but after just a few sessions I noticed myself standing straighter with no pain. I was even caught in the check out line at the grocery last week and felt fine after waiting on my feet for a half-hour.)
It was decided from our group that most people could tolerate the yoga movements with proper training. The special class is not being offered again, but you are encouraged to start with a beginner's 5-week class and then move into a yoga basics class when you are ready. It is important to speak to your instructor about your condition and to never push yourself beyond your own abilities. I started in a yoga basics class last week and had to shorten up a few moves, and even sit out a few. But instead of it being embarrassing, everyone was encouraged to do only what they were comfortable with, even the 'normals'!
I encourage you to try out this relaxing form of movement exercise. The 5-week beginner classes are offered several times a week for starting out. If you already know yoga join one of the basics classes. Call 239/433-5995. The Health and Harmony Center at the Olde Iona Schoolhouse, 15951 McGregor Blvd., Fort Myers. 239/433-5995
Fibromyalgia Awareness Day needs YOU!
Started 7 years ago by patient and advocate Tomm Hennessy, Jr., president of RESCIND, Inc. as a yearly reminder to the public and health officials that people like you really do exist despite the invisible nature of your symptoms. May 12th honors the birthday of Florence Nightingale, the English army nurse during the Crimean War who was a pioneer of the Red Cross movement. Nightingale herself was many times bedridden with symptoms similar to ours, yet went on to inspiring accomplishments, including the founding of the first School of Nursing.
Awareness day is now a world wide event, increasing awareness of these debilitating diseases and allowing patients and organizations to educate the general public, healthcare professionals, media resources and government officials.
Ready-made packages are available for you to easily get involved. Get your mayor to proclaim on official Awareness Day, or other elected officials, with form letters and addresses provided on varying websites. Send press realeases and sample letters to the local media, write letters to congress or local legislature.
Contact any of your favorite national FMS or CFS organizations for more information. Or contact the NFA-National Fibromyalgia Association, 2238 N. Glassell Street, Suite D, Orange, CA 92865. Or visit any of the websites below. I will be gathering more information on this as we get closer to the date and put it on our web site, www.CFS-FMS-FL.org and our next newsletter. Below are some web sites to visit with links and info.
www.fmaware.org/may12/may12_2003overview.htm FM Aware Magazine
www.fmaware.org/may12/procletter2003.htm for a sample letter to officials
www.fmaware.org/may12/proclomation2003.htm for a copy of the proclamation
www2.whidbey.com/FM/ Many activities, links, and addresses to write to.
www.abcnews.com/sections/living/DailyNews/fibromyalgia980408.html
heatlthweekend@foxnews.com Fox on Health is asking for story ideas. Fox News airs a two hour weekend health broadcast. E mail and request they cover a story on Fibromyalgia or related illness.
www.oprah.com/email-oprah.html Tell Oprah your story!
See a Doctor from Home!
Health-care Web site www.eCureMe.com offers eConsult Live 24 service, a 24 hour center, with real time consultations with physicians using camera equipped instant messaging software. $4.99 minute, most visits are 10 to 45 minutes with follow up visits available.
Research in the News
All research reported here is for educational purposes only and is not a recommendation to try the treatment. Do more research on your own. Most research items are still in the study stages. As of today no known cure is available for either Chronic Fatigue or Fibromyalgia.
Ciguatera Toxin is a potent neurotoxin from fish being found in the blood of CFS patients, according to the National CFIDS Foundation of Massachusetts. The research was announced in November 2002 at a symposium in Japan. “Ciguatoxins are… some of the most potent biological toxins known. They produce dramatic neurological manifestations, such as peripheral sensory or motor symptoms (including parasthesias, pain, burning, tingling, numbness), central nervous symptoms such as headache, autonomic dysfunction and also affect multiple body systems (gastrointestinal, immune, hepatic, cardiovascular) and the muscles. Many CFS patients in the study had higher levels of the toxin than the patients with cancer, hepatitis or acute ciguatera poisoning.” Press release found at www.ncf-net.org/library/nuerotoxinPR.html
The research was presented by Dr. Yoshitsugi Hokama, a world expert in the area of fish toxins. The research into CFS and ciguatera connection was funded by the National CFIDS Foundation. To date all tests from patients with CFS have come up positive for the toxin in high amounts. Testing is available at a cost of $100 with results sent to your physician. There is no proven treatment, and Cholestyramine is mentioned as not helping. They hope to have a proven treatment sometime this year.
Warning from the editor; although this sounds like wonderful news, I am having trouble finding information about this research. If anyone has more information please let me know.
Botox for pain. Botox injections (botulinum toxin type A) are being used for relief from chronic incapacitating pain. The toxin produces prolonged muscle relaxation and can be targeted to specific muscles. Studies have been done on Botox for Myofascial pain syndrome. In one study 70% of recipients received good to excellent pain relief lasting 2 ½ to 3 ½ months. 10% were free of pain at the yearly follow up. Reactions are mild. Botox works by blocking a nuerotransmitter and stops muscle contraction. It is also being used to treat migraine. It is very sensitive poison and is possible to develop immunity if persistent injections are needed. Since Botox works by paralyzing the targeted muscle for up to 3 months, the benefit can also be a risk, once injected there is no going back. I found some reports on the Internet of injections sites causing unrelieved pain for Firbromyalgia patients, due to careless injection practices. The rather high cost for this treatment is covered by some health plans. It has been in use for over 10 years, and the name gained popularity as the wrinkle reducer used by cosmetic surgeons. From Doctor's Guide to the Internet at www.docguide.com , and www.pulse24.com/news_Features/Pulse_on_Health/ , and www.drlamb.com/magicbotox.htm
Book Review
From a review found at www.chronicfatiquesupport.com by John W. Addington
Dr Jay A. Goldstein, director of the Chronic Fatigue Institute of California specializes in the care of patients with CFS and related illnesses. He wrote the book Betrayal of the Brain. Now a patient of his, Katie Courmel translated it in lay terms with A Companion Volume to Dr. Jay A. Goldstein's Betrayal of the Brain. Dr. Goldstein has a unique approach to individual diagnosis and treatment. Believing CFS and related disorders are nuerosomatic disorders Dr. Goldstein says the afflicted “do not feel, think, or function properly because the brain does not handle information properly….how the brain, the immune system, and the hormonal system simultaneously regulate the function of each other is 'out of whack' in various ways in patients with nuerosomatic disorders.”
Dr. Goldstein describes the disorders as having abnormally low levels of certain neurotransmitters such as norepinephrine and dopamine, and high levels of the neurotransmitter Substance P (pain). The brain then is unable to assess the relevancy of the information it receives and becomes overwhelmed. He believes this state of brain disorder has come about in one or a combination of the following factors. 1. Genetic susceptibility; 2. Childhood periods of feeling unsafe. (causing elevation of Substance P and hormones to fluctuate); 3. Viral infection; 4. The outcome of the first three, impaired flexibility of the brain.
For both diagnosis and treatment he uses medical histories and the use of drugs, administered one at a time, each known to target specific biochemical pathways. This is a very individualized diagnosis and treatment. Some will give results in seconds, some 45 minutes. Then he can prescribe in a more specific manner for individual symptoms. This requires an average of 3 office visits, but could take up to a year. Courmel says 50% get dramatic improvement after the first day, 25% the second day and 20% 'eventually'. Leaving only 5% he is unable to get improvement for.
Dr Goldstien also uses natural treatment such as Acetyl-L-Carnitine, vitamin B-12, DHEA, Ginkgo Biloba, Ginseng Saponins, Gotu Kola, Honey Bee Venom, Kava Kava and St. John's Wort. These last two he feels work the best.
For more information contact Chronic Fatigue Syndrome Institiute of Orange, California
www.drjgoldstein.com 701 N. Glassell Street, Orange, CA 92867 714/516-2830
Educate Yourself
Over the counter pain medications, prescription pain medications, soft drinks, antibiotics, food additives and alcohol are linked to chronic disease and infection by attacking the gastrointestinal tract. Over time the mucosal lining breaks down allowing bacteria, virus and fungi to enter the body and create optimal conditions for chronic disease and infection. Many natural solutions exist to help fortify the GI tract from damage, including acidophilus products that replace the friendly bacteria of the gut, colostrum which repairs damage, and avoiding as many of the offending products as possible.
Self Help classes for CFIDS/FMS on the web
This is an on-line, work at your own pace class providing coping strategies particularly chronic illnesses such as CFS and FMS. It is an e-mail discussion group offered 4 times a year with groups of 15 to 20. It uses a book for text. Groups are facilitated, by trained volunteers, with a constructive, solution oriented discussion. You receive a lesson each week (for 8 weeks) and have 7 days to complete it. Lessons and responses are sent to all group members. Pacing, realistic short term goals, stress, emotions, relationships, relapses, and developing your own self management program are all discusses. Read more about it at http://cfidsselfhelp.org/course.htm
Reading List/Web Surfing
Check your local Library for all kinds of reading; CFIDS, FMS, and related disorders, spiritual, self-help, history, nutrition, yoga, art, and just plain good reading. You name it, they got it. And if they don't they will get it for you on inter-library loan. some libraries give away donated magazines, and some libraries offer a special book delivery for people who cannot travel.
BOOKS
What Your Doctor May NOT Tell You About Fibromyalgia by Dr. St. Amand
Betrayal of the Brain by Dr. Jay A. Goldstein
A Companion Volume to Dr. Jay A. Goldstein's Betrayal of the Brain. By Katie Courmel
WEB SITES
Visit our very own web site at www.CFS-FMS-FL.org !!!!!!! thanks to Ken Schneider.
www.fibromyalgiatreatment.com Guaifenesin treatment with R. Paul St. Amand, MD and Claudia Marek:
www.geocities.com Guaifenesin treatment, The Guai Group
www.netromall.com Guaifenesin treatment, Tesa Marcon
www.fmaware.org/may12/procletter2003.htm for a sample letter to officials for Awareness Day
www.fmaware.org/may12/proclomation2003.htm for a copy of the proclamation of Awareness Day
www.ncf-net.org National CFIDS Foundation
www.docguide.com Doctor's Guide to the Internet
www.pulse24.com/news_Features/Pulse_on_Health/
www.drlamb.com/magicbotox.htm Dr Lamb on Botox
http://cfidsselfhelp.org/course.htm CFIDS self help course
www.muhealth.org/~fibro/fm-md.html Good article on Fibro
www.eCureMe.com on line doctor visits
http://fmscanberra.helingwell.com Austrailian site
http://ahmf.org Alison Hunter Memorial Foundation for kids with CFS, good description of CFS and related disorders, unkind and unfair treatment by medical establishment in Australia
www.tertius.net.au/~gossamer Not Done Yet, another kids with CFS site, this time a survivor, inspriational and with a daily journal.
http://tignor.com/food/ Food Can Make You Ill, food intolerances, allergies and related issues.
http://cfs.inform.dk CFS Information International
www.niad.nih.gov/factsheets/cfs.htm Government produced info on CFS
Laughter is the Best Medicine
Bliss
My face in the mirror
Isn't wrinkled or drawn
My house isn't dirty
The cobwebs are gone
My garden looks lovely
And so does my lawn
I think I might never
Put my glasses back on!
Disclaimer
The Chronic Fatigue and Fibromyalgia Syndromes Support Group is a self-help program to present ideas and exchanges with the members. None are to be construed as medical advice. This newsletter does not dispense medical advise not is any endorsement intended. No responsibility will be assumed for any specific medical hypothesis or product, and will assume no responsibility for any treatment or activity undertaken by readers.
Contact
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Mail to (or bring to next meeting):
Roxy Barber, 4114A S.E. 18th Ave., Cape Coral, FL 33904