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Homemade Isoprinosine/Immunovir

S

starcycle

Guest
I tried some inosine today, and seemed to feel better from it, with slightly less fatigue and a seeming reduction in swollen gland feeling. I got a little nauseated this afternoon though, not sure if it was from that or something else. I think I'll try it again tomorrow.

Aside from possibly being an immune modulater, the uric acid formed from the inosine is supposed to be a potent scavenger of peroxynitrite, which, if true, I would suspect to be the cause of immediate small improvements rather than any changing the immune system, which I would suspect could take longer. But that's just a guess.

My WBC is chronically low (<3.5-4) ever since first having the chemical injury that started all these health problems, but I haven't had it tested since this immune aspect of the chronic fatigue happened. I was getting it tested every 3-4 months to track the thyroid levels (I developed hashimoto's a couple years ago also, from the immune problems related to the chemical injury), but since getting CFS I don't know if I'll get tested again. If I don't start improving I think I'll just let the thyroid worsen until it kills me rather than live with this level of CFS for the rest of my life. It's just not worth it. If I do get tested again while on the inosine, I'll try to remember to post the results here.

If you want to raise NK and cytotoxic T cells, the medicinal mushrooms might be good to try (reishi, maitake, shiitake, cordyceps, etc.) Those are known to raise NK cells. I also found this yesterday on medline, a chinese herb called Tai Zi Shen (Pseudostellariae). I think it might be worth a try.

Evid Based Complement Alternat Med.. [Epub ahead of print]
Polysaccharide of Radix Pseudostellariae Improves Chronic Fatigue
Syndrome Induced by Poly I:C in Mice.

Sheng R, Xu X, Tang Q, Bian D, Li Y, Qian C, He X, Gao X, Pan R, Wang
C, Luo Y, Xia Y, Dai Y.

Department of Pharmacology of Chinese Materia Medica, China
Pharmaceutical University, 24 Tong Jia Xiang Road, Nanjing 210009,
China, yuedaicpu@hotmail.com.

Radix Pseudostellariae is used as a tonic drug in traditional Chinese
medicine with immunomodulating and anti-fatigue activities, and the
polysaccharide is considered as the main active component. The purpose
of this study is to examine the effect of the polysaccharide isolated
from Radix Pseudostellariae (PRP) on mouse chronic fatigue syndrome
(CFS) induced by intraperitoneal injection of
polyriboinosinic:polyribocytidylic acid (poly I:C), a double-stranded
synthetic RNA. It has shown that the fatigue symptom of mice lasted at
least 1 week as evaluated by forced swimming time. PRP (100, 200, 400
mg kg(-1)), orally administered 3 days before poly I:C injection,
showed dose-dependent anti-fatigue effects. In addition, poly I:C led
to evident alternations in neuroendocrine and immune systems of mice,
such as reduced spontaneous activity and learning ability, declined
serum level of corticosterone, increased weight indexes and T
lymphocyte numbers in thymuses and spleens, and increased
CD4(+)/CD8(+) ratio but decreased proliferation ability of T
lymphocytes in spleens. PRP alleviated the abnormalities caused by
poly I:C, and restored the function of hosts to normal conditions. The
findings suggest that PRP is beneficial to CFS, and the underlying
mechanisms of action involve neuroendocrine and immune systems.
 

Hysterical Woman

Senior Member
Messages
857
Location
East Coast
Welcome Starcycle

Hi Starcycle,

Welcome to the forums. That's for posting your information. Could you share with us what kind of chemical injury you had that started you down this road?

Take care,

Maxine
 

Marylib

Senior Member
Messages
1,155
for Maxine

I can't tell you about immune system tests before or after isoprinosine since we can't get those tests here. I guess maybe a white blood cell test, but mine was normal last time. Don't really have access to others.
 

Hysterical Woman

Senior Member
Messages
857
Location
East Coast
Marylib

Hi Marylib,

Thanks for responding. It is a shame that you can't get the tests there, and even tho we have them here, many can't get them because of the cost.:(

I was able to get some immune blood work done years ago when I was still trying to work, and the values were definitely scrambled - especially NK cells, CD4's, 8's, etc.

It would be interesting to know if Dr. Cheney actually did immune system testing for his immunovir patients and then with the inosine patients. Otherwise, how would one know if their immune systems are actually getting better?

BTW, I have always wanted to travel to New Zealand! But unless I gain the ability to stop time, get a "cure", and win the lottery, there is probably not much chance of me doing that now.

Take care,

Maxine
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
By the way, I had a problem when I was trying to enter my address. It wouldn't let me continue. I had to select a different country and then select US again. Then a box came up to select my state, after which I was able to proceed with my order.

Hi Cfssince98,
someone else from the US tried to order some isoprinosine from goldpharma, but didn't know how to proceed when it wouldn't let her continue (after selecting US as her country).

I don't know if its a bug in their software, or that they don't deliver to the US. If you find out let us know as I'm sure many people from the US would prefer those prices if possible.

garcia.
 
S

starcycle

Guest
Hi Starcycle,

Welcome to the forums. That's for posting your information. Could you share with us what kind of chemical injury you had that started you down this road?

Take care,

Maxine

Hi Maxine - toxic fumes from a carpet + gas stove exposure did it to me. Mercury poisoning was ultimately found to be at the root of it.
 

Hysterical Woman

Senior Member
Messages
857
Location
East Coast
Starcycle

Hi Maxine - toxic fumes from a carpet + gas stove exposure did it to me. Mercury poisoning was ultimately found to be at the root of it.

Hi Starcycle,

Sounds like a nasty toxic "cocktail". I am always interested in the toxicity aspect of this illness. I was working at a hazardous waste disposal facility when I became ill.:(

Thanks for sharing your story with us. Please keep us informed as that what you are trying and what impact it has on you.

Good Luck,

Maxine
 

cfs since 1998

Senior Member
Messages
604
Hi Cfssince98,
someone else from the US tried to order some isoprinosine from goldpharma, but didn't know how to proceed when it wouldn't let her continue (after selecting US as her country).

I don't know if its a bug in their software, or that they don't deliver to the US. If you find out let us know as I'm sure many people from the US would prefer those prices if possible.

They deliver to the US as I just received my order a few days ago (took a little over a week I think). So it is apparently a bug/glitch. Just select a different country and then select United States again. It took me some time to figure out...it didn't say they didn't deliver to US anywhere on the site and since they have a conversion to US dollars and US option on the shipping address, it didn't make sense, so I just fooled around with it until I got it to work. Someone should probably email them and tell them it doesn't work right.
 

Hysterical Woman

Senior Member
Messages
857
Location
East Coast
cfs since 1998 - another side effect

Hi CFS Since 1998,

You had asked me earlier about what side effects I was having with the inosine and I responded to that question. However, there is another one I forgot to mention because I am getting so used to it, but it might be important so I bring it up now - sores/ulcers inside of my nose (I know, disgusting).

I first had sores/ulcers inside my mouth when I started taking olive leaf. They were annoying and I mentioned it to my local CFS friend who sees Dr. Cheney. She said she had the same thing when she started immunovir and that she complained to Dr. Cheney about how uncomfortable it was. He asked her to hang in there with those symptoms because it meant that the immunovir was "working". So I also tolerated that side effect hoping that it meant the same thing for the olive leaf. After about a week on olive leaf they went away, but would come back every time I increased the olive leaf dose. The last couple of times I increased the olive leaf, the ulcers/sores didn't come up in my mouth, but inside my nose.

When I started the inosine, the ulcers/sore came back in my nose. They go away and come back but don't stay very long. I am not sure if they are more prevalent when I am on the 4 pill dose week as opposed to the 2 pill dose week because I try to ignore them when they occur hoping that the inosine is helping.

I have no idea if the ulcers/sores come from the ebv & cmv in my heart tissue is working it's way out of the body? Guess guess guess - the name of the game.

Good luck with your continued experiments and let us know how you are doing.

Take care,

Maxine
 

Hysterical Woman

Senior Member
Messages
857
Location
East Coast
Prevention of patients obtaining immunovir??

Hi cfs since 1998 and all,

Beckster posted on another thread that the new proposed health care reform bill would prevent patients from ordering drugs from outside the U.S. How would that impact those of you who are getting immunovir?

Do you guys think this will really happen? I wouldn't pretend to be able to understand what is currently going on in the health care bill debates.

Thanks,

Maxine
 

Hysterical Woman

Senior Member
Messages
857
Location
East Coast
Isoprinosine is not FDA approved and it therefore would be excluded from the drug formularies of all US insurance companies. I have very good insurance and Dr. Cheney used to prescribe isoprinosine to me. I still had to pay for it out of my own pocket by ordering from Rivex Pharmaceuticals in Canada, as did all of his other patients.

Cheney now uses inosine in his protocol rather than isoprinosine. He settled on using inosine because it is quite cheap and his patients are supposed to take 500mg sublingually twice a day as a pretreatment for his cell signalling factor protocol because inosine evokes a positive heart function response measured using echocardiography. Unfortunately, a lot of his patients have found that inosine taken sublingually causes severe headaches. This came as a surprise, because isoprinosine taken orally had no such side effects. That is a definite indication that inosine is not identical to isoprinosine.

So CFS_since_1998, please keep us posted on your findings, as the addition of DMAE to inosine may prevent these headaches and be generally more beneficial than inosine alone.

I will even bring some DMAE powder to my next appointment in January for Cheney to mix with the inosine to see if the echocardiography response is the same, better, or worse. I will then post the results here.

Hi Minimus,

If you could, please update as to whether you were able to take some DMAE powder to your appointment with Dr. Cheney to have him run it with the echocardiogram.

Thanks!

Maxine
 

dsdmom

Senior Member
Messages
397
I Unfortunately, a lot of his patients have found that inosine taken sublingually causes severe headaches. This came as a surprise, because isoprinosine taken orally had no such side effects. That is a definite indication that inosine is not identical to isoprinosine.

I just started Imunovir today and it is giving me a horrible headache. I did not even take the full dose - has anybody else had this issue? Does it go away? I feel icky too - like glands hurt and I just feel sick. But the headache is the worst part.
 

dsdmom

Senior Member
Messages
397
Hi cfs since...
Any update on your progress with this? I just read your blog (very impressive) and posted a comment that I'll repost here...could you take the 2 ingredients you have found to a compounding pharmacy and ask them to put them in a capsule form at the right ratio? I don't even know if they would do that or if a capsule form would be ok...just trying to figure this all out. I spoke w/ Nancy Klimas today and she thought that the gluten in the imunovir is what caused my terrible headaches. If that's the case, I can't take it. I guess they used to make a gluten-free version but don't any longer. This is so frustrating since I really want to be able to take this so am trying to figure out if there's a way to make it myself like you have...

How have you measured out the grams?
 

cfs since 1998

Senior Member
Messages
604
Hi cfs since...
Any update on your progress with this? I just read your blog (very impressive) and posted a comment that I'll repost here...could you take the 2 ingredients you have found to a compounding pharmacy and ask them to put them in a capsule form at the right ratio? I don't even know if they would do that or if a capsule form would be ok...just trying to figure this all out. I spoke w/ Nancy Klimas today and she thought that the gluten in the imunovir is what caused my terrible headaches. If that's the case, I can't take it. I guess they used to make a gluten-free version but don't any longer. This is so frustrating since I really want to be able to take this so am trying to figure out if there's a way to make it myself like you have...

How have you measured out the grams?

I wasn't aware there was any gluten in immunovir. Does the form you were taking come in capsules or tablets? If your form comes in capsules maybe the gluten is in the capsule and you can empty them out and take it that way?

I still think the headaches might be from a herx/brain inflammation type thing. Is it the same type of headache you get when you eat gluten or is it a different type of headache?

I am not taking the "homemade substitute" because I found there were side effects of the DMAE component which I didn't have with the actual drug. This side effects I had were mainly restlessness/inosmnia and anxiety. It also tastes sour because of the tartaric acid which is in the DMAE.

Be aware that if you do this you are a guinea pig. I would have an NK cell function assay done before and after to see if its actually doing anything, since it's not quite the same substance as the one in immunovir.

As far as measuring, I simply dissolved the components in water. I think I made a few days worth at a time so that I wouldn't have to use odd fractions of teaspoons. If you want help with the measurements you can PM me. If you need capsules (eg for convenience) I suppose you could call compounding pharmacies and ask, I do not know whether they would do it or not. Yyou might be able to do it yourself if you got the correct size empty capsules.
 

dsdmom

Senior Member
Messages
397
The Imunovir is in tablet form, so I can't empty it out unfortunately. I spoke with the distributor today and he said he was unsure why they switched to manufacturing with a gluten filler, but that it had extremely small parts per million of gluten in it - should be fine for many people but for some it is not. The headache is similar to what I get with gluten - in fact I had horrendous headaches for a long time and when I cut gluten out (among other things) they improved greatly. Of course there is the chance it is not related to gluten at all and I may find that out when I try inosine.

In the meantime I guess we are going to give LDN a try first. I had my follow-up call with Nancy Klimas today and went over my blood work - NK tests and all. She wants a repeat of them in 4-6 months so it will be good to have it monitored.

I really hope that I can eventually take imunovir - but only time will tell.
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
The Imunovir is in tablet form, so I can't empty it out unfortunately. I spoke with the distributor today and he said he was unsure why they switched to manufacturing with a gluten filler, but that it had extremely small parts per million of gluten in it - should be fine for many people but for some it is not. The headache is similar to what I get with gluten - in fact I had horrendous headaches for a long time and when I cut gluten out (among other things) they improved greatly. Of course there is the chance it is not related to gluten at all and I may find that out when I try inosine.

In the meantime I guess we are going to give LDN a try first. I had my follow-up call with Nancy Klimas today and went over my blood work - NK tests and all. She wants a repeat of them in 4-6 months so it will be good to have it monitored.

I really hope that I can eventually take imunovir - but only time will tell.

My personal opinion is that the headache is not related to gluten. The tablets I have are marked as being "Suitable for people with ceoliac disease", so as the distributor said it must contain only a tiny amount of gluten.

Headaches are listed as a possible side effect of the medication, e.g. see here:

http://www.medicines.org.uk/emc/medicine/1235/SPC/Imunovir#UNDESIRABLE_EFFECTS

Inosine doesn't have the same effect on the body as Imunovir, so if you don't react to inosine it won't tell you anything.

My advice would be to give imunovir another try. This time maybe start at a very low dose and build up slowly. Also drink plenty of water.
 

nsdn

Senior Member
Messages
183
Thank you very much @heapsreal . Have you proven that it is good? The payment method is Western Union or Coingate. Is this store legit? Thank you.