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"The wonderful thing about your
site is that sadly for many of us that are sick cannot get insurance or a
doctor. If not for your encouragement and advice it
would be worse. I respect your mission to help us who need it
so dearly. If you polled how many sick have no doctor, it would be
surprising. I am thankful for your time and I know you are
doing the work of God."
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2. BACTERIAL PROCESSES SEEM KEY TO CFS REMISSION
An interesting study has found that individuals with FMS have significantly lower blood levels of ATP (Adenosine triphosphate) than individuals without the condition. ATP is a molecule which is essential for storing and transporting energy within the cells. The chemistry is complex, but according to the Life Extension Foundation site, there are several supplements which can support the body's natural production of ATP.
"One case report suggests that supplementation with D-ribose, the 5-carbon sugar that forms the base of ATP, may be helpful (Gebhart B et al 2004). Additional nutritional supplements appear to support the production of ATP, including the following:
Magnesium and malic acid. Magnesium is essential to healthy muscle function. The enzymes that liberate energy from ATP require magnesium to function properly. A review of studies on magnesium and malic acid found that blood levels of these two nutrients vary considerably in people with fibromyalgia, but multiple, controlled studies have found magnesium and malic acid to be effective in relieving the symptoms of fibromyalgia (Holdcraft LC et al 2003).
Vitamin B6. Pyridoxine is required to boost the action of magnesium and malic acid in the creation of ATP. Vitamin B6 supplementation may be considered for patients with fibromyalgia whose vitamin B6 levels are abnormally low."
July 2008. "Platelet ATP and cation concentrations were measured in 25 patients affected by FMS and 25 healthy volunteers through a chemiluminescent and a fluorimetric assay, respectively. RESULTS: Significant lower ATP levels were observed inside platelets of FM patients. A trend towards higher calcium concentrations together with significant increased magnesium levels were also reported in platelets of patients by comparison with controls. CONCLUSIONS: This preliminary study suggests that disturbances in the homeostasis of platelet ATP metabolism-signaling and calcium-magnesium flows might have a relevance in the pathogenesis of FMS."
4. WHAT IS CFIDS/FMS/ME?
http://www.pandoranet.info/faq.html
5. LIST OF FIBROMYALGIA SUPPORT GROUPS BY STATE
http://www.fmaware.org/site/PageServer?pagename=community_supportGroupDirectory
6. ACID & FIBRO
From a reader--
"You indicate that acid promotes disease. I was just telling this to gals in my fibro class, some of whom are still drinking sodas and I am telling them that getting off soda changed my life. I was hardly ambulatory from joint pain, but got off soda completely and it helped. I still have joint pain, but reducing acid is key. I also take a pill to reduce acid. Prelief is a supplement that my urologist gave me to reduce acidity and possibly help my interstitial cystitis. Anyone can take Prelief. It safely reduces body acidity."
7. BUY GENERIC OTC BRANDS CHEAPLY
From a reader--
"The best way to buy generic benadryl (dyphenhydramine) is to either buy the 100 capsule bottle at Walmart, or ask the pharmacist to look up dyphenhydramine in his supplier list and see which large bottle is cheapest. I used to work in a pharmacy as a pharmacy technician and most people don’t know to do this. There are 3 huge wholesalers who supply pharmacies and all the OTC meds are in there in large bottles, and it’s very, very cheap. Nobody sells these OTC, you have to ask for a special order, but there is no extra charge for this. EVERY pharmacy has the ability to do this with their wholesaler catalogs. I can usually buy 100 dyphenhydramine for about $3.50. Same goes for dymenhydrinate, or any other OTC."
8. LYRICA
Reader 1--
"I tried Lyrica – NOT! I had
a terrific hangover and could not function at all
works wonders for me. you have to take
the directed dose everyday im on
50mg. 4 times a day. it takes the stiffiness
away that you have when
you get up in the morning and reduces pain. i dont
know what id do with
out it. i that provigil for the tiredness and i have
percocet for any
major flare ups happen. things in life trigger flare ups to
so i have
the percocet for them. you cant help jthe major stress in llife so
i do
still have a flare up now and then . but i dont have the constant
pain
stiffness soreness i had before i started lyrica. i suffered for
5
years with awfull pain . my family doctor would give me predizone
and
davocet which didnt help much and it took about 4 days for the
steroids
to kick in. i hope you give it a try . i did gain 6 pounds in a
year
and a half which isnt that bad. depression meds but weight on to .
do
you streches excrise and watch what you eat and you will be find.
i
know the more you strech and move the better you
feel."
"I tried LYRICA, it did take alot of my pain away for 3 months before I realize it was making my fatigue worse, I was feeling very tired, & dizzy, was having trouble breathing at night and other symptoms. When I stop taking the LYRICA I felt much better, more in control of my mind."
Reader 4--
"I recently was put on Lyrica. The relief from pain was instantaneous and complete. Then I discovered I'd gained 15 pounds in 3 weeks. I no longer it take."
Reader 5--
"At the moment I'm taking a break from Lyrica. My body just got completely warped with bloating. Maybe the last 7 months have at least broken the pain cycle. I'm back on Tramadex as of this morning and I'll add Tegratol at night in another few days. I haven't given up on the Lyrica, but I have to "deflate" for a while. Maybe I'll lose back some of the wt I've put on as a result."
Reader 6--
"I started the Lyrica again. The pain was too much yesterday. I'll just have to deal with being a bit lumpy."
9. FEEDBACK ABOUT FIBRO & FATIGUE CENTERS?
Please respond directly to Doris ronhoyt@comcast.net--
"I am wondering if any of your readers have tried going to a "Fibromyalgia and Fatigue Center?" They have half a dozen or so around the US. They are not covered by my insurance and they are spendy, but I am thinking of trying them out. Just wanted to know if anyone you know has had success or NON success with them. PLMK or feel free to give out my email. - Doris"
10. SEROQUEL
From a reader--
"I was prescribed seroquel for a sleep disorder. It is a very strong drug. It is used for bi-polar and such. It did help me sleep, but I had a "hangover" with it, and can't deal with that. I have Fibro, and was prescribed this by a Physchiatrist. That is always their answer to everything. Dope them up. No, I did not like it at all. I have a very high tolerance with drugs, and this one was different, so I know it was strong! I did find I have sleep apnea, and now use a C-Pap. I sleep much better, along with taking Lyrica, 300 mg, at night."
11. HHV-6, CFS & AIDS
From a reader--
12. CIMIC
From a reader--
"I'd like to tell you that after coming off my homeopathic meds last year November, which had helped me so much for general all-over joint and muscle pain, my pains had come back, and I went back onto them about 2 months ago and have really found that my pain has diminished greatly. My major problem which is back pain is still there, and I don't think will ever go away, but all those joint and muscle pains throughout my body really have diminished to the point that I don't think about them at all! I've said before that all homeopathic remedies are prescribed for the person and that one remedy is not specific for all (as with many medications) but mine - Cimic - really has helped."
13. RATE YOUR DOCTOR SITES
From a reader--
Click here: Doctors are 'in' for online evaluation - ajc.com - http://tinyurl.com/6laoav
Sites are below.... WEB SITES FOR OPINIONS - SECOND AND OTHERWISE - ON MEDICAL PROFESSIONALS
Web sites that rate and review doctors, and sometimes other health professionals, have sprung up in recent years as patients have extended the consumer-empowerment movement into the health care field. Here's a sampling of sites:
www.RateMDs.com - This free site for consumers was launched in 2004 by the founder of RateMyProfessors.com. It provides a 1-to-5 rating scale in four areas: staff, punctuality, helpfulness and knowledge. Consumers can add anonymous comments and join a member forum to chat about a doctor.?
www.DrScore.com - Founded in 2005 by a doctor, the site allows consumers to rate doctors anonymously using a 1-to-10 scale. Only aggregate ratings are posted. Safeguards make it impossible for patients to skew results by repeatedly rating a doctor. Doctors can subscribe to detailed reports that analyze the data provided by consumers.?
www.Healthgrades.com - Healthgrades began as a pay-based service, but about 90 percent of information on doctors is now free, including doctors' education, training, insurance plans, group practice information and aggregate numerical patient satisfaction ratings. The site does not post anonymous consumer comments. Some physician profiles include videos of the doctors explaining their approach to health care. Consumers can order a physician quality report, which includes additional information such as board certification, malpractice judgments and fee information, for $29.95.?
www.Vitals.com - A free service for consumers that provides three types of information on doctors: consumer ratings and comments, credentials and experience, and doctor-peer reviews. Doctors can contribute information on themselves to the site. The site also helps consumers select an appropriate doctor for specific symptoms or conditions.?
www.Nursesrecommenddoctors.com - A free service for consumers that enlists nurses to provide anonymous ratings and reviews of doctors they work with or who have cared for them or family members. Nurses rate doctors using criteria such as communication and rapport, competence and experience, and whether the doctor treats his or her staff with care and respect. The site lets patients and doctors provide input as well.
14. DOM'S SUPPORT GROUP
DOMINIE'S FIBROMYALGIA & CHRONIC FATIGUE SYNDROME HOMEPAGE