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TOPIC: From hopeless to hopeful--what is helping me...

From hopeless to hopeful--what is helping me... 10 years 6 months ago #1

  • javan999
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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.)

You may have seen me post a similar message under different subjects--but I've been diagnosed with all of these different conditions. I've been diagnosed with MCS, Chronic Fatigue, Neuroimmune illness, Fibro, Depression/Bipolar, ADHD, allergies, etc. Seeing that I've been diagnosed with and suffer from all of these things; hopefully some of what I'm doing might be helpful for some of you as well.

I was asked if some supplements I was taking 6 months ago were still working and I replied to the individual that unfortunately they lost of a lot of their effect--HOWEVER, I found better treatments.
I had been suffering immensely 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.
<br /><br />Post edited by: javan999, at: 2010/01/27 12:47
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Re:From hopeless to hopeful--what is helping me... 10 years 6 months ago #2

  • Maff
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Hi Jason,

Great to have you back on the site and thanks for posting such extensive information!

It's good to hear you're much more positive and have found a lot of things that are making a difference for you. Like you say, NK cell deficiency/dysfunction is a significant and consistent problem in the illnesses we suffer from so treatments aimed at this area can often be very helpful by all accounts.

What have been your experiences with other antidepressants. I have tried all the SSRIs and SNRIs with no effect whatsoever, tricyclics (amitriptyline) knocks me out and wipes my memory even at low doses - so I gave up. I have often wondered if an MAOI would be beneficial however as their mechanism of action is the most potent and I have a lot of problems they theoretically would help with.

Anyway thanks again for your posts.

For anyone wishing to see Jason's SPECT scan it can be found in this blog post:

SPECT Scan of Multiple Chemical Sensitivity (MCS) Patient Brain
If you are going through hell, keep going - Winston Churchill
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Re:From hopeless to hopeful--what is helping me... 10 years 6 months ago #3

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Thanks Maff-

I appreciate you putting up the link so that people can check out my NeuroSPECT scan that I have had posted on here with your help.

It might give an idea as to what many of the people on the site's brain looks like if scanned.


Hey Maff- I saw several posts put on concerning 'retraining' the brain to not be sensitive to MCS... Do you know much about it; such as if it works?
That all comes as a bit of a shock--as if it worksthat is great. I also saw that one person used antipyschotic to get well and I'm wondering what antipsychotic he might have been taking.

Concerning your question about medications I have been on.
I have been on a total of either 27-28 different psychotropic medications. I can without a doubt say the MAOI- Parnate has worked the best. I have had some of the least amount of usual side effects. Blood pressure issues are basically the only possible issue for people taking it--and serotonin syndrome. However if you are not combining other antidepressants with it, that isn't really a worry--AND, I have learned through personal experience that if you are having a hypertensive attack you can take 'Tenex' a blood pressure medication to bring it down.

I had experience with this about two weeks ago- no joke. First time ever with Parnate, and I have had about a year an a half experience with it. It went up really high, I got very scared--kept measuring it and it got up to 171/80, 175/85, and then 183/92... and climbing. I had had some Tenex my doctor had prescribed for me for other reasons, and I took one and half. I had my friend take me to the ER with a horrible headache and stomach cramps.
To my surprise, when I got to the ER, and they checked it, it was down to 138/70, and a little while later 112/60. The Tenex seemed to work in bringing down the blood pressure and the Tenex is VERY inexpensive. Few cents a pill, literally.

I know that sounds scary but I cannot actually say enough positive things about Parnate. They are tested and over 50 years old and so they have a known long term safety profile. They have much less side effects than Tricyclics.
I've been on nearly all the SSRI, nearly all the SNRI, Wellbutrin, stimulants, most of the mood stabilizers, many of the antipsychotics, Tenex, a few Tricyclics, and two of the MAOI, Selegiline and Parnate. (I might be forgetting some, lol--I know there are 27 to 28.)

But whenever I talk to people I suggest MAOI... I never much had any luck with the other ones, but with Parnate it has helped a lot!
I wear a necklace around my neck with important medical information saying that the MAOI--and telling any medical personel to not mix drug combos and all that...

Anyway--I hope that helps.

Talk to you soon.

Jason
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Re:From hopeless to hopeful--what is helping me... 10 years 6 months ago #4

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One other thing i wanted to point out about the medication/drugs I am taking... Believe it or not I REALLY am actually quite anti-drug. I think if there is a way to avoid drugs, and another option can be found that is more naututral--then that way should be pursued.

However--as I am sure you are aware; that is not always possible.
I do want to point out however that the drugs I am on I tend to feel pretty good about in particular.

First the Parnate (MAOI) that I mentioned has been on the market for approx. half a century. If it was causing long term effects for people it would have been pulled from the market permanently... especially after the patent ran out and there was not a lot more money to be made on the drug. Not to mention with the POSSIBILITY of interactions with specific foods and certain drugs--the medication already had two strikes out against it. Even the slightest thing would be enough to yank it from the market- yet when Dr. Krammer wrote the book 'Prozacs backlash' he warned that the new drugs were more dangerous and advocated using the older anti-depressants instead.

If it was found to be causing liver problems, or dementia, or cancer, or heart attacks it would have been yanked; but the truth is it has stayed on the market for so long because it works when other things do not.

I also wanted to point out the benefit to low dose Naltrexone. I am not sure if you have articles posted about this already (would not be surprised if you do, you are often very knowledgable)--but this is a real treatment option for many people especially if they have Fibro. It is VERY safe, especially at low doses, and very inexpensive. I have been taking it and have been quite happy with it.
A famous doctor I follow is Dr. Mercola... Mercola.com. He is quite anti drug as well and thinks drugs are a last option; and believe it or not, he was the one I first heard about the treatment from... describing it as very safe, very inexpensive, and improves
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Re:From hopeless to hopeful--what is helping me... 10 years 6 months ago #5

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(Continued from above...)

It improves pain, inflammation, and often times function in Fibro. and M.S., as well as Chronic Fatigue. It is said to reduce Glutamate levels in the central nevous system by lowering iNOS and lowers oxidation, falling right in line with Dr. Martin Pall's theory. It works as an anti-oxidant and improves immune function.
It is safe and comes out to costing about 50 cents per day out of pocket without insurance.

The other 'drug' I wanted to talk about is the Imunovir / Isoprinosine. In reality it is closer to being a health supplement than a drug. Even studying the patent of the drug--the make up is nearly just, Inosine and DMAE--both of which can be picked up at the health food store. Unfortunately I have tried this and not gotten the same benefit as the manufactured stuff. The main component is Inosine however which increases Uric acid levels.

The Neurontin is a compound that is thought to increase GABA in the brain, the low dose Lithium is found naturally in food and water and protects the brain and the Melatonin is picked up from a health food store.

-Jason
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Re:From hopeless to hopeful--what is helping me... 7 years 1 month ago #6

  • Maff
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Hi Jason,

I've just been looking over old posts from the site as I am working on a new version and came across your fantastic thread here which I never properly replied to. If you are still out there then I just wanted to say a huge thank you for all the great information you provided and the insights into how it all helped you. Apologies for not getting back to you at the time, I think I was in the thick of doing my nutritional medicine degree...

I wonder if you ever tried the brain retraining programs? I continued to get many positive reports about them long after you posted on the subject. I believe the theory they are based on is sound and the techniques employed certainly target the central hyperactivity of the limbic system which is highlighted.

Interestingly on the MAOI front I actually tried one of the modern ones a year or two back - Moclobemide. It inhibits MAO-A and MAO-B just like Parnate but is reversible so doesn't require the dietary restrictions and other precautions associated with Parnate and Nardil. I must say Moclobemide had a very rapid onset of action for me (a few days) and no side-effects other than it ended up being a bit too stimulating so after about 6 weeks I was having a lot of trouble sleeping and getting agitated. From experience I know this was just the drug working as intended however - I react the same way to lots of things including herbs and nutrient supplements. Like you found though, this MAOI was much more effective and side-effect free for me than the whole range of SSRIs/SNRIs and tricyclics I'd tried in the past.

Lithium orotate unfortunately gave me the same problems with over-stimulation. I had hoped this would have a balancing effect rather than a stimulatory one.

I'm very interested and encouraged by what you had to say about isoprinosine when you wrote these posts. It is a 'drug' I have read a lot about for over a decade as all the ME/CFS specialists have used and recommended it at some point. I have tended to shy away from immune-modulating drugs and supplements as I had a very bad experience with EPD injections which are supposed to neutralise allergies and sensitivities but just left me in bed with flu-like illness for a week after each injection and rapidly made my gut dysbiosis a whole lot worse. Bad things can happen when you tinker with the immune system! I believe isoprinosine is much gentler and safer than EPD and other forms of immunotherapy however and will think again about giving it a try.

Just to let you know I have now been MCS-free for 9 years! I credit my recovery to strict avoidance of chemical exposures for a number of years and addressing adrenal fatigue, particularly with DHEA.

I sincerely hope you're doing well and once again thank you for sharing this great information with us all!

Take care,

Maff
If you are going through hell, keep going - Winston Churchill
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