Discussion in 'General ME/CFS Discussion' started by saint, May 9, 2014.
Can you please tell me where Dr. Demerleir is located? I never came across his name. I never heard of GCMAF. Have you used it?
Didn't get the Valcyte. Drugstore going to see if the coupon will take money off next week. We have $5,000 deductible on our insurance. Insurance plans are getting worse, with high deductibles.
Wondered if anyone has tried iodine as an antiviral.
i took valcyte and valtrex, high dose, for 3 years and had no improvement really.
dr. kenny demeirleir has clinics in brussels, norway, and reno, nevada. he is heavily involved in research. he and his colleagues have published papers showing the autoimmune nature of CFS.
i have used gcmaf for a few yrs. it has helped me.
I believe you mean Brussels, Belgium. (Says the future MIL of a Belgian-American )
Genentech Foundation has a very generous patient assistance program. i have been their recipient for 2 different drugs. They will go out of their ways to help.
I used large doses of very good quality, high strength olive leaf extract for months and in my case it wasnt of any help at all (I get a lot of viral problems eg reactivity herpes and viral symptoms.. Ive had severe EBV and carry CMV). Good olive leaf extract isnt cheap either thou of cause far cheaper then what you want to take.
If you can get to see Doc Pridgen, he gave me the meds for free (may God bless him). You can look him up and email him. He's using Famvir & celebrex. Tough on stomach but I keep taking vitamin A & zinc to heal, and drink the real ginger ale - with real ginger in it.
Thanks for that bit of info! I will contact them. What drugs do they assist with?
If you can make the trip, Doc Pridgen gave me meds for free (he is very kind man). I had to travel to Alabama which actually cost less than the Valcyte prescription!
This is why I like sharing experiences. If olive leaf didn't work for you, then I guess you do need the 'bigger guns' - Valtrex, Famvir etc. so I'm not going to waste money on.
I'm still curious about iodine. Bought some at Vitacost - pretty cheap - been taking that at doses far higher than stated on box. Lugols tore my stomach up - but this stuff tastes like water. Dr. Sircus recommends on his website. It isn't cheap to get sick.
Thanks for sharing that. Where do you get immune modulators from?
@saint I guess you missed where I said I was homebound so traveling to Alabama is out if the question.
If the doc lived next door to me, then I could see him I guess.
Sorry - did miss that. I too am homebound. I "bottomed out" and was at the end of my rope.
Begged dr. to put me in hospital because I was so weak I couldn't stand it. I was so wiped out. On oxygen. I was pretty desperate so my husband agreed to take me. I was bedridden for years - but did make small gains when went to fibro doc & he ran blood tests & I found out what I was dealing with.
Traditional docs are pretty useless when it comes to treating these disorders. I eventually had to switch to a home-care service (some docs smart and re-instituting house calls but you have to search to find one) to get basic meds, but had to cancel many times when going to fibro doc. Just did not have enough energy to travel the 1 hr. ride.
If you get too bad, call 911 - my dr. called for me a few years ago when I couldn't breathe & they came to house and brought me to hospital in ambulance - so no energy output to drain from my empty tank. At least they'll send you home with some pain meds - not good for liver, but some cases necessary to survive.
Although - you still have to be careful in hospitals...lot of money crunches on entire workforce = rising hospital errors. That's why one doc told me there is such an explosion of fms/ cfids - stress, everybody working 2 jobs... those with money & political clout are out of touch with the realities of Joe & Jane Average.
Maybe you can look for a home-care service in your area. At least you might find a doc willing to work with you & prescribe you the meds - and Doc Pridgen will work with your dr. if you want to trial the Famvir protocol. I had suggested to Holtdorf that they do house-calls because the people they are dealing with are usually too sick to leave the house. They just forwarded it to doc who works with them - he is a good dr. - but wish he made house calls.
Maybe if we, as a group, petitiioned these holistic docs, they would agree to make house calls. It's such a hard road, that few understand, unless/ until they've been there. I hope you find the help - I know how bad this gets.
Anybody want to start a petition?
@saint I cannot read what you wrote because I can only read 2 or 3 sentences in a row without have a break in the text. I was commenting on Valcyte and why I couldn't see Prigen. That was all.
I've been sick for almost 20 yrs. I'm well aware of what is out there and what I can do.
Sorry. I was trying to help you.
I understand but as I said, I've been sick for over 20 years, I've been here and other forums for a long time. I know whats available.
Thanks - will look up Gcmaf & also see what this docs protocol is.
I hear you. I have been sick a long time myself.
I am getting the pridgen drugs from my dr this week hopefully - has it worked for you?
You can also try a Google Site Search
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