Hello everyone- I haven't posted on here in a while.
(I had written this to a fellow member and decided to share it as well.)
Sorry for the looong delay in getting back with you.
Well as with many things some of the items I was taking seemed to begin to slightly lose their effect.
I had been suffering immensely again and wasn't sure where to turn.
I have however am on something that is helping quite a bit; so I wanted to tell you about it.
Keep in mind, I am severe- suicide severe often. So if something works for me, I can't imagine it not working for someone else really.
In 2006 I had a NeuroSPECT scan at UCLA, where they found low blood flow and signs of low grade inflammation. The pictures are actually on this site, I posted them--do a search!
I am taking (1/4) of 1MG of Melatonin each night, I am taking (1/2) Eskalith 450MG at night, (5) 300MG Neurontin, and I switched back from Paxil and Wellbutrin to Parnate (MAOI)--I'm currently at 40MG a day. I am also taking low dose Naltrexone (5MG) which is something you might really want to look into. Do a search for it. It interacts with the immune system. It is supposed to reduce inflammation by reducing iNOS, and increase Natural Killer cell (NK cell) activity which is routinely low in people like ourselves.
My doctor had me taking Famvir each day but I couldn't tell any improvement so I went off of it.
ALSO- one other thing I have noticed helped a LOT is called [Imunovir / Isoprinosine] (search for it online). It is expensive unfortunately. I have been taking 6 pills a day, 500MG each pill=3,000MG <in divided doses>. It is not available in the United States but you can order it off of 'Life Extension Drugs' website. That has helped me a lot. I ran out so I'm waiting for a refill, and then I will combine it with what I'm already taking. It works as an antioxidant increasing Uric Acid, but also stimulates NK cell activity- which like I said above is routinely low in people like ourselves.
I am CURRENTLY trying to find other countries to order the Imunovir / Isoprinosine from. I have been told it may be sold in France--for a very low price. Approx. 10 Euros per a box of 40 pills. That is MUCH lower than what it costs online. I'm looking for ways to possibly order it from the UK if they have it available. Some of you life in the EU, so if you have some information on the drug -I WOULD GREATLY APPRECIATE IT!!!-
Then I'm also trying to work on getting in to see an Environmental Allergist in southern California- and look into P/N therapy. Provocation, Neutralization therapy. I have heard many others say it helps a lot(???)
THEN I also plan to get tested for the XMRV because I also have Chronic Fatigue as well... I will do that through the Whittemore Peterson institute, VIP-DX...
As I'm sure you have read, XMRV might be highly implicated in these type of Neuro-Immune illnesses.
I know of someone whom was involved in the study in Reno when they were testing people. The study has made big news, even featured on Dr. OZ show, and published in the top journal in the world called 'SCIENCE'.
Anyway, this one guy, about my age tested positive, and I asked if he had trouble with chemicals, and he said, 'absolutely.'
So I do think it could be implicated. IF I were to test positive for it, AZT has been tested effective in blocking replication of the virus in studies so it is possible to take it for a while- although it is a quite toxic drug. It might be possible to put it into remission if the immune system was allowed to recover somewhat.
Aside from that, simply avoiding foods that bother me, trying to have a 'clean' place of toxic chemicals, and eating a lot of fruits and vegetables to reduce inflammation seem about like the most effective things I have found.
I have tried nearly EVERY type of supplement under the sun. You name it, and I've pretty much tried it. I've spent thousands of more dollars than I would like to admit to. I have hundreds of bottles of different supplements I have tried so I've really tried A LOT of different things!... A LOT of trial and error (hundreds if not over a thousand); so my recommendations come with a LOT of reading, and trial and error.
I hope this helps. I'm also currently looking into how to combine and make my own Imunovir/Isoprinosine so I don't have to buy it. I have tried a few things and read about a few different people experimenting with substitutes after studying the patent of the drug- but no luck THUS far, but I'm determined.
Hang in there, you really should try some of the things I mentioned. I really don't want to go into the HUUUUUGGGEE list of items I have tried... it would take so much time and I would be bound to leave many things out.
Keep your chin up- if I can do it, so can you. I've been suicidal and even partially attempted once. I've been hospitalized in the psyche-ward twice. I've broken down to family and friends hundreds of times, and I've been will with this for 11 years now.
Don't give up- Don't give up.
-Jason
BTW- If there is anyone out there looking for possibly a roommate, I would love to find someone also with this condition I could share a place with; as we would both have the same, or near the same requirements.
I live in Southern California, but I also go back and forth between Colorado, Arizona, and Wyoming.
My number is 909-363-5379, email is This email address is being protected from spambots. You need JavaScript enabled to view it.... Don't hesitate to contact me.
