March 12, 2007
Looking for Info on DeprenylR
Q: Has anybody out there tried DeprenylR thoroughly enough to make a statement of pros and cons? I have bought the medication but am hesitant to start without prior feedback. I’d like answers from real patients only, not doctors or researchers please! – FR
A: The best and fastest way for you to find out what other patients have experienced is to post your question on our message board. (For those who have not heard of it, this prescription drug is said to inhibit breakdown of dopamine. It is FDA approved for use in Parkinson’s disease, and in patch form for major depression, has been termed a nootropic or ‘smart drug’ by some, and is sometimes used “off label” for other indications.)
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What Happened to CFIDS?
Q: I do not understand the idea behind the new name. Many years ago, I was diagnosed with "CFIDS" (chronic fatigue immune deficiency syndrome). At least at that time there was "immune deficiency" in the name given for my condition… I am battling an immune disorder. Neither chronic fatigue nor ME really describes my condition. Hasn't anyone thought of putting "immune deficiency" back into the name? There would be a lot more respect for people like myself if my condition were described as immune deficient. - Sharon
A: Although CFIDS became a popular name in the late ’80s, it has never been the official name for this illness. Research papers, insurance coding methods, and the Social Security system recognize CFS and ME but not CFIDS. The reasoning behind the recommendation of ME/CFS is both practical and logical. It simply has the best chance of being accepted by both the medical and governmental communities. ME/CFS is intended to be a transitional name to be used to help people make the connection and understand that ME is CFS. Eventually the CFS will be dropped and ME will hopefully become the official name.
It’s also important to note that the names of most diseases do not accurately define the intricacies of the illness. The goal of the name change effort is not to find the perfect name but to find a name that is respectful and does not trivialize the seriousness of this illness.
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Need Info on Quaifenesin Protocol
Q: Here in England I am on the Guaifenesin Protocol and buy from your company. What I don’t understand that there is no mention about this protocol anywhere that I can see. Are you aware of the City Of Hope Study that Dr. St Armand is doing? – Mrs. C
A: If you go to ProHealth’s website - http://www.immunesupport.com/ - and type “guaifenesin” in the search box (in the upper left under “Search Our Site”), you will pull up a number of articles on guaifenesin and the Quaifenesin Protocol from the archive. The most recent ones, from the past few months, are:
“An FM Patient Counselor's Primer on the Guaifenesin Protocol” by Claudia Craig Marek, medical assistant to FM specialist R. Paul St. Amand, MD - http://www.immunesupport.com/library/showarticle.cfm/id/7514
“The Guaifenesin Story: A centuries-old bark extract used for clearing the airways – now key to a popular FM symptom-reversal protocol” - http://www.immunesupport.com/library/showarticle.cfm/id/7244
“City of Hope Embarking on Three-Year Study of Inflammatory Gene Activation in FM Patients” - http://www.immunesupport.com/library/showarticle.cfm/id/7428
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Help! I Need Emergency Intervention
Q: Nine years of learning and understanding more about FM/CFS than any doctor I have seen has not made anything about this illness any easier for me. I have declined each year to the point of giving up… I feel that there must be organizations that can provide emergency interventions to help people like me who are suffering severely… What do we do when we have succumbed to this illness out of no choice and have no one or nowhere to really turn to for true help? …There seems to be help available for people with financial issues with other diseases and illnesses, so why not FM/CFS? …I hope you can tell me at least if there are advocates that I can turn to. – AJ
A: Your letter expresses a need shared by so many others, and obviously solutions are in short supply. It is not an easy question to answer. We are focused on turning up and encouraging the kind of “emergency medical intervention service” you need, and perhaps, by publishing your letter here, we will get suggestions from all over the country on resources such as area clinics and programs run by specialists as well as Medicare coverage and other sources of financial aid.
The biggest hurdle we face in trying to help individuals find this kind of assistance is that these types of services are almost always provided at the state, city, or county level and vary greatly from one location to another. There is one national program that is working to provide information and referral services for local areas. It’s called 2-1-1 and works just like calling 911 for emergency help and dialing 411 for directory assistance.
2ll service is currently available in all or parts of 41 states, plus Washignton, DC, Puerto Rico, and parts of Canada. It serves 65 percent of the U.S. population and is constantly being expanded. Operators at 211 centers are trained to help assess the needs of callers and provide appropriate referrals. To learn more about this service and to find out if it is available in your area, visit the 2-1-1 Web site: http://www.211.org
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What Should I Say to My Doctor?
Q: I was diagnosed with FM about 10 or 12 years ago… I believe I have ME/CFS but I cannot get past the FM diagnosis. When I am shopping around for a good FM doctor in my area, I always ask them are they knowledgeable about FM and CFS and I am always told yes. But when I get into see them, I find that they are just the same as other doctors who don't really take it seriously. What can I say to the doctors to get them to listen to my symptoms without jumping the gun all the time? …How do I get them to diagnose me with ME/CFS if they won't even listen to what I am telling them? I am running out of doctors in my immediate area. – Teri
A: You don’t say what kind of doctors you are seeing. Although a good rheumatologist should be able to treat both FM and ME/CFS, if you’ve been that route with no success, you might try an infectious disease specialist about the ME/CFS. One effective method to get your doctor to pay better attention to your symptoms is to give him/her a printed list that he/she can review with you and include in your file. (Most of us comprehend information better if we see it as well as hear it.) Keep your symptom descriptions as short as possible and put them in list format so your doctor can read them quickly and easily. Finally, try posting your question on the message board to see if other patients have found ways to better communicate with their doctors.
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Seeking SytrinolR Studies
Q: Are there any recent studies regarding the effectiveness of Sytrinol?R
A: For those who may not know, SytrinolR is a plant-derived dietary supplement proven to promote healthy cholesterol levels. The latest research we could find was published in 2004 and 2005. You can find an article reporting on the results of those studies at: http://www.source-1-global.com/index.php/cat/Sytrinol-Home/cat_id/31584
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Note: This information has not been evaluated by the FDA. It is not meant to prevent, diagnose, treat, or cure any disease, condition, or illness. It is very important that you never make a change in your healthcare plan or regimen without researching and discussing it in collaboration with your professional healthcare team.
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