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Help! My alternative Dr. is listening, but needs more Info.!

Messages
6
Okay,
So I have been misdiagnosed with MS. Then told I had Chronic Lyme and co's by some and M.E./CFS by others. I suffered terribly, but oddly enough- what happened next was a miracle to me. They say that every cloud has a silver- lining and I found one! ...... But it's too bad how I found it.

You see, I was attacked ( raped ) by a man. So, I went to the E.R. I was prescribed P.E.P. ( HIV Prophylaxis). They gave me Isentress, Viread and Truvada. Well, Within days- I was NO LONGER SICK!! I was AMAZED and began to look into it. I also went to the Health Dept. and got on a free Prep program that consisted of only Truvada. But, much to my dismay, I started getting ill again. And, after researching- I knew it was the Isentress above all else that had helped.

Well, the good news is that I have consistently tested negative for HIV. But the bad news is that because of it- I cannot get on a program to get a precription or the drug for free. So..... I found an alternative Dr. who is wonderful! He believes me, but doesn't know much about it. He wants me to send him articles about other patients who have used it, and any proof he can see. We talked candidly- and he said he would have to check my liver enzymes etc. and learn more about dosage/ side effects etc. He came right out and said that he doesn't wanna get screwed for trying to help me out. But he actually believed me and listened to me!

So, please help with information, and he wants to know of any Dr.'s he can consult with that already have made this discovery too. Please Help. I really need help with this before he will prescribe it to me. He says we have to be safe doing it. I NEED MORE MEDS NOW. But he won't prescribe it until he understands it better.
 
Last edited by a moderator:

Wishful

Senior Member
Messages
5,684
Location
Alberta
Just a warning: many ME victims respond wonderfully to some drugs...for a short time, and then the drug just stops working and may never work again. That doesn't mean that it's not worth trying that drug or similar ones, but just be aware of this annoying aspect of ME.
If that drug does only provide you with one temporary remission, at least it's showing you that it is possible to get better, rather than being permanent degradation of your body. That knowledge helps me keep going.
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
@Goldilocks keep going on this, and put it out there in any way you can (if you are able to as I know it means baring your story and everything which will be hard to do)
It's wonderful you have such a good supportive -and sensible -doctor. That is a great blessing.

I wish I could help you but have no experience of these drugs.
I very much hope you find some people to come forward soon with their experiences and stories for your doc. My best wishes to you.
 

Hip

Senior Member
Messages
17,824
And, after researching- I knew it was the Isentress above all else that had helped.

Might also be worth looking at the tenofovir, as this paper says:
Tenofovir may show a supplementary effect on MS activity compared to others antiretroviral drugs, since it is administrated in the form of a prodrug containing fumarate, which is the active ingredient of dimethyl fumarate recently approved for the treatment of RR-MS.

You can also get fumarate in the form of the supplement ferrous fumarate.

Tenofovir also has fast-acting anti-inflammatory effects.



You might like to break up your above post into short paragraphs, as many ME/CFS patients have trouble reading continuous text.
 
Last edited:
Messages
28
Okay,
So I have been misdiagnosed with MS. Then told I had Chronic Lyme and co's by some and M.E./CFS by others. I suffered terribly, but oddly enough- what happened next was a miracle to me. They say that every cloud has a silver- lining and I found one! ...... But it's too bad how I found it.

You see, I was attacked ( raped ) by a man. So, I went to the E.R. I was prescribed P.E.P. ( HIV Prophylaxis). They gave me Isentress, Viread and Truvada. Well, Within days- I was NO LONGER SICK!! I was AMAZED and began to look into it. I also went to the Health Dept. and got on a free Prep program that consisted of only Truvada. But, much to my dismay, I started getting ill again. And, after researching- I knew it was the Isentress above all else that had helped.

Well, the good news is that I have consistently tested negative for HIV. But the bad news is that because of it- I cannot get on a program to get a precription or the drug for free. So..... I found an alternative Dr. who is wonderful! He believes me, but doesn't know much about it. He wants me to send him articles about other patients who have used it, and any proof he can see. We talked candidly- and he said he would have to check my liver enzymes etc. and learn more about dosage/ side effects etc. He came right out and said that he doesn't wanna get screwed for trying to help me out. But he actually believed me and listened to me!

So, please help with information, and he wants to know of any Dr.'s he can consult with that already have made this discovery too. Please Help. I really need help with this before he will prescribe it to me. He says we have to be safe doing it. I NEED MORE MEDS NOW. But he won't prescribe it until he understands it better.
How long have you already been sick?