My AZT + RAL Trial

[Rrrr]

ladybug,

don't forget that dr. nancy klimas warned us a few times (as did dr. bell, i think) that the early tests could easily be inaccurate. that is what happended with hiv. still, this is a big let down. i get it.

i am routing for you!!!!

Rrrr

 

[citybug]

I think the interview with Dr. Chia on Phoenix rising said can react to oxymatrine in first weeks then long period where don't notice more improvement, 6months? and also the artesunate takes similar story. and somewhere, was it cheney? said levels can be improving but the patient can't tell at all, probably looking at complex immune tests that are not easy to get access to.
For safety checking liver enzymes, and is there anything else good to keep watch on for safety?

 

[heapsreal]

i agree kdp, i think sue has to give it time, though waiting is frustrating, antiviral treatments are the same, it takes more then a month to see results and longer too make significant improvement. I think just getting that initial improvement is a good sign, like a diet, u always loose alot of weight in the first 2 weeks, then it slows down to a pound a week etc.

How quickly to HIV patients respond to azt???

 

[goldiland]

Sue,

I don't think you should let yourself get too disappointed by any of this. I posted to you before that the XMRV test is not accurate to date and there could be multiple reasons why it either detects both false positive and false negatives. Klimas has specifically told all her patients not to get tested right now. Klimas is also doing some new cytokine level testing that evalutes trends in 14 cytokine levels. I'm not sure if this is a commercial test as of yet, but you might want to find out because I think you are on the right track that cytokine levels really dictate how lousy we feel and lowering them is a significant key to feeling better.

I wish yoiu well... we've all been to the place where you are now with trying to figure out if something is working, whether you need to add something else, whether you need more time, etc. For my own two cents, you know your test results better than anyone and need to make your decisions based on what the evidence tells you. So if AZT or another retroviral drug is ultimately not your answer based on the evidence, there are other drugs and immune modulators that people are successfully using.

 

[Hope123]

Yeah, I agree with the other posters that the tests are still not validated yet. You might want to think about tissue biopsy if you are eager for confirmation; this has some risk as any time a cut is made, even with a blood draw, there is risk of infection/ bleeding but biopsies are done commonly for diagnosis and if it is superficial, like a lymph node biopsy versus an organ biopsy, the risk isn't overly great. Problem is that you might need a lot of samples to catch the bug and looking for XMRV is not common -- you might need to contact Prachi Sharma at Emory to ask how she stained those monkey tissues.

Re: timing. Looking at the antiviral and rituximab trials, there is a lot of variation in when people get well. For rituximab, it varied from six weeks to 26 weeks until people really saw improvement among the three cases written about. Don't know why but I guess it could be a function of bugs involved and differing immune systems of individuals.

My doc, who has a large HIV practice, tells me HIV+ folks respond clinically within a few weeks to 3months of so, often dramatically. She tells me that they are testing tenofivir and ratelgravir as a preventative medicine among people who are healthy, NOT HIV+ but high-risk (sex workers, promiscous, etc.) in Africa and now expanding this to trials in the US. It's early yet but she thinks this speaks to the relative safety of these drugs compared to early HIV meds that they could use it in non-HIV+ folks.

VIP dx has cytokine testing but I don't know how accurate it is if it takes several hours to get to the lab.

 

[alice1]

Hello sue.
I think it would be so good for you to call Dr Klimas and tell her your story.
She may be very willing to help you out.
oxox
al

 

[goldiland]

Sue,

One other thing to consider and I think someone else also mentioned immunovir on this post.... I will say from personal experience that it had a significant impact on reducing my cytokine levels and my symptoms and function greatly improved ( I mean from probably a 4 to an 8). It is certainly not cheap but is well worth a six month trial. Klimas is having very good success with this immune modulator and is using it as a first level treatment .... many have had significant increases in NK function and decreases in viral titers to Epstein Barr and HHV-6. She is definitely not opposed to using Valtrex and Valcyte... we've discussed antivirals numerous times.... but she is reluctant to use those types of drugs because there is the potential for drug resistance. If and when a virus is finally implicated in CFS, she does not want her patient base to be drug resistant which is what happened to many of her early HIV patients.

Regards,
Gregg

 

[Rrrr]

i think alice1 had a great idea. can you call klimas and talk with her? i wonder if she consults on cases?

 

[leaves]

Dunno about phonecalls; she will want to run labs. But otherwise I think it would work. Its pretty easy to get an appointment with her (takes 2 weeks or so) and she is very hands on. I like her!
And Gregg; are you still on immunovir? are you still an 8?

 

[goldiland]

Sue... Klimas is impossible to get in touch with outside of scheduled appointments.. I've been her patient for over 10 years and it is one of the few bad things about Nancy. You can certainly try to call her assistant and give it a go... her name is Marta Gonzalez and her number is 305-243-3291. Dr. Lina Garcia is also an option... she is a young physician at UM in the immunology/CFS group and has access to Klimas. I've been part of some of the CFS studies that Klimas's group is running and Lina heads most of them up. Her number is 305-243-1568.

Leaves is right that getting an appointment at her CFS clinic shouldn't be a long wait.... she basically has physicians that she has trained herself and acts as advisor/consultant on each case. I see her at the University of Miami and the waiting list for new patients is a year, so clinic is the way to go. The only problem with the CFS clinic is that I believe it is out of pocket.

Leaves, I was on immunovir for about six months and went off in March 2009... I am still an 8, hoping for even more. I still have daily symptoms but compared to many of us, have no right to complain. Klimas now has me on immpower (AHCC), CoQ10 - Ubiquonol 200 mg and wants me to start taking a glutathione precursor (MaxGL) once I get up to 300 mg of CoQ10 in another month. I've also been on Xyrem for about a year and a half and as I've gotten better, I've been able to a) reduce the dose to once a night and b) often been able to sleep well on my own without Xyrem. I think I posted some info on immunovir on one of the threads regarding Klimas but feel free to contact me if you need more info.

Regards,
Gregg

 

[Cloud]

So does Dr Klimas order the Immunovir from Europe herself and dispense it from the clinic? It appears quite a hassle and expensive to obtain it by myself (even with a script). Any good links comparing Immunovir to Inosine?

 

[leaves]

No from compounding pharmacy in Canada

 

[Hysterical Woman]

So does Dr Klimas order the Immunovir from Europe herself and dispense it from the clinic? It appears quite a hassle and expensive to obtain it by myself (even with a script). Any good links comparing Immunovir to Inosine?

I think CFSSince.... found a place to order it from that wasn't too expensive. I'll see if I can find his post.

Hysterical

ETA - it was heapsreal who found the source - see discussion here:

http://www.forums.aboutmecfs.org/sh...de-Isoprinosine-Immunovir&highlight=immunovir

 

[Ecoclimber]

thanks david but i dont feel like there has been any progress in a while. the improvement happened very quickly and now i still feel pretty sick. its like its stalled. i just feel like something else is needed.

Dr. Goff, one of the top retrovirologists AZT: He said he would only take AZT if he knew XMRV was rapidly replicating in him. (AZT attacks the virus during replication; if the virus is not replicating much then AZT is not going to touch it). At least in the blood we don’t have any evidence that XMRV is replicating much. IIn fact it appears not to be replicating much. Is it replicating elsewhere? No one knows.

 

[garcia]

So does Dr Klimas order the Immunovir from Europe herself and dispense it from the clinic? It appears quite a hassle and expensive to obtain it by myself (even with a script). Any good links comparing Immunovir to Inosine?

Yes there is a thread on this forum on Imunovir containing a discussion of the relative merits of imunovir & inosine. CFSince98 wrote about the comparison on his blog. The upshot of the discussion was that I felt that imunovir was much better than inosine. I think CFSince98 feels the same (certainly he was of the opinion his "home made version" was much better than plain inosine).

 

[cfs since 1998]

Yes there is a thread on this forum on Imunovir containing a discussion of the relative merits of imunovir & inosine. CFSince98 wrote about the comparison on his blog. The upshot of the discussion was that I felt that imunovir was much better than inosine. I think CFSince98 feels the same (certainly he was of the opinion his "home made version" was much better than plain inosine).

Thanks for linking to my blog. However those posts are old so I will briefly summarize my thoughts as of now. Inosine is one of the ingredients of isoprinosine, but only about 25% (the other 75% is a salt of dimethylaminoisopropanol), it doesn't make much sense to substitute inosine in place of isoprinosine, although inosine can raise uric acid and might help ME/CFS in that manner. A homemade substitute using inosine and DMAE is possible but I found the side effects too much. I think the prices at goldpharma make getting isoprinosine from them the most appealing option if you want to try this. Personally I decided for myself that the immune boosters like astralagus, AHCC, beta glucan, echinacea, etc., might be good enough. Isoprinosine is a good drug but not all that strong.

 

[Cloud]

Thanks everyone.....I'll check out the other thread and link. The only reason I would consider Inosine over Immunovir is because it's cheap and over the counter, whereas, Immunovir is expensive, and requires a script. I'll look into Goldpharma as well, and some other sources. If they require a script, I may not hassle with it.

 

[Cloud]

No from compounding pharmacy in Canada

So the Canada pharmacy must not require a script for the Immunovir? I would be very surprised if Dr Klimas would give a patient a script to obtain a drug from outside the USA?

A search for Immunovir on the Goldpharma site finds nothing.....but I got this searching Isoprinosine:

Isoprinosine tabl bt 30x500mg 30 Tablets us$ 13.35 buy ISOPRINOSINE TABL BT 30X500MG
500.000 mg inosine pranobex (UNI-PHARMA ΑΕ)

 

[dsdmom]

Not to turn this into an imunovir thread, but when I was just at Klimas' clinic, she said that generally likes to keep patients on imunovir for about a year and then switches them over to inosine because it is cheap. she said she was not convinced that the inosine worked as well as imunovir which is why she has patients on it to start but then she believes some patients don't want to stop taking it for fear that they will feel worse again but they switch to inosine at that point because it is cheaper.

 

[leaves]

Hi Cloud,
yes: dr klimas sends prescription to Canadian pharmacy. The inosine you found in goldpharma is the right one. Cheap eh half the price of the canadians and u don't even need a prescription...