Jemal
Senior Member
- Messages
- 1,031
Sorry for the late response. I'm really in dubio what to do with this disease. Instead of going to the doctor asking for doxycycline I'm researching the option to consult prof. de Meirleir. I wanted to do this a while ago, but since it would take BIG chunck out of my saving money and the ongoing XMRV research hold it off. I'm going to give it another couple of months, at least untill the blood working group comes out with their data. Depending on their conclusions I'll take a decision.
I know where you are coming from. I am also waiting for some more news from the BWG, before putting effort and money in getting tested for XMRV and such. It would be nice to know if I got this virus, but nothing is really proven at the moment and I wouldn't be able to get a treatment from regular doctors. I have considered visiting De Meirleir as well, but I have been reading a lot of patient stories and I am not sure what to think of him. On some points he seems to be very far ahead of the game... on other points I am not so sure. And I detest having to pay for everything. I am Dutch of course
I do feel XMRV is somehow the silver bullet to this disease (playing a big factor), but we'll see.
I'm also taking B12, ALCAR, ubiquinol, fish oil and Vitamin D. Unfortunately it helps only marginally, if anything at all. Btw, the Dutch recommended daily amount of vitamin D (5g/200IU per day) is very outdated. According to new scientific insights you need at least 2000IU-5000IU a day. Although a vitamin D bloodtest would be the only reliable measurement to base a supplement scheme on. http://www.vitamindcouncil.org/ is a great site with info regarding vitamin D from the world's leading scientists of vitamin D.
Yeah, I know the recommended daily amount of Vitamin D in the Netherlands is outdated. But my symptoms got worse when I took larger amounts of Vitamin D, so I am just taking 100% of the recommended daily amount at the moment and I feel that is helping.
I had a minor Vitamin D deficiency by the way, discovered by the internist I was seeing. I got supplements and got retested: I was no longer deficient.
(now I am always wondering how accurate these tests are, because I know some tests prove nothing, like some B12 tests).
I quit taking Fish Oil, but I see it popping up a lot on the forum lately. I guess I will start taking it again to see if it makes a difference. My biggest problem was that I had a closet full of supplements and it was getting ridiculous: I was taking like 10 - 15 different supplements and vitamins. About 6 months ago, I kicked out most of the supplements and starting experimenting with 1 supplement at a time to see what helped. I am aware you need to take combinations of vitamins some time, I am taking some Zinq, Calcium, etc to support the other supplements.