Antiretroviral Trial

[undcvr]

As of this time 1 in 4000 pple on Rituximab will get PML. They still dont have a way to test and to tell if you will be one of those that will die from it. Rituximab kills all the B cells in your immune system, they are the one that keeps oppportunistic infections at bay. With no more B cells left, they become active again and attack the body. If you happen to have any one of those infections that are in your brain, well, good luck I guess.

Otherwise it would be one of the more promising ways to cure HIV.

 

[Daffodil]

hi all. thanks pinky

charles...i think rituximab helps cuz it reduces the viral load by killing off the B cells. i guess a lot of the virus lives in those. other than that, dont know much about it....

und..i thought rituximab kills people by activating the JC virus? maybe i am thinking of some other drug...

i have appt with cardiologist on march 7....perhaps he can shed some light on why my heart is acting so badly. i think he wrote some paper on HIV and the heart so maybe he will have some insight. would love to get back on AZT 600. this fog is just CRAP.

researchers still say i shouldnt need a lot of CNS penetration cuz of XMRV...wtf

thanks for reading

-sue

 

[undcvr]

No Daff, you are rite about Rituximab and the JC virus, but Rituximab is linked to several other viral infections as well once all the B cells are wiped out.

 

[Charles555nc]

I know my immune is so suppressed right now that I probably wouldnt survive Rituximab, so our hopes are...

-Prostratin
-Antiretroviral with good cns penetration/lower side effects
-any break thoroughs in HIV or FELV

Edit: Just got my test results back, Im positive for XMRV... I dont know whether to be sad or happy.

 

[mojoey]

Hey Charles,

Thanks for letting us know about your XMRV status. Wishing you the best of luck with that. I thought you were looking into gcmaf/DCA?

 

[redo]

Just a short note about Rituximab.

Although Rituximab may - in some (rare) cases reactivate latent infections, it isn't some sort of "extreme drug". It's an antibody, the antibody attaches to b-cells, and thereby the body has practically no b-cells for some months. It is being used for patients with moderate to severe RA who don't respond to other drugs. They don't have to wear a surgical mask to avoid getting normal infections after getting the drug. They are instructed to not change their habits after the infusion.

It's also been used in hundreds of MS patients.

A small CFS study has been published. And Cort interviewed the people behind the soon to be published study of 15 who got Rituximab, and 15 who got placebo. Seems like the results are good there as well (good job Cort!).

When looking at the 52 cases, it's important to note that Rituximab is the most used cancer drug for lymphoma. It's been taken on hospitals throughout the world for over a decade. Of course there are patients who would get PML regardless of the drug, and of course, all cases are not picked up by the health system. But - the 1:4000 risk is for Lupus patients. Lupus patients seems to be really overrepresented. When it comes to RA patients, the numbers are 3:100,000 (registered cases, unnoticed ones are not put into that number).

Also interesting to see how the drug can heal white matter lesions of the brain in MS patients.

 

[Daffodil]

hi all. i have been doing better the last few days. still sleeping 1/2 the day and homebound but less inflammation. not many more details to give...just feeling somewhat hopeful again. am still on the drugs with azt at 200 bid..a little chest discomfort but not worrisome.

turns out prostratin human trials will not begin until 2012 i think. i'm keeping my eye on GcMAF, CMX157 (several years still), prostratrin (probably several years still). wonder if elvitegravir would have any affect on XMRV..thats an upcoming HIV med.

i guess we can give up on the idea of something being fast tracked by the FDA for XMRV...most people still cant find it...

wonder if i can ever have a normal brain again :-/

just saw news on our local TV station, stating that study finds CBT and exercise therapy is most beneficial for CFS. lol. most of my relatives already think i'm nuts, so that should help!

sue
xoxo

 

[undcvr]

So with their Bcells completely wiped out these pple are still fully functional ?? No precautions needed at all ? I am assuming blood tests are required anyway, thats amazing ! I wonder what part of the immune system is making up for the compromised lack of Bcells ??

 

[August59]

Is it all B cells or just B memory cells or is there no difference?

 

[Anne P]

Hi Daffodil

I wonder if my experience with ME/CFS over the last almost 30 years and myriad treatments can be of some help in trying to work out what is causing the chest pain when you take AZT. From the beginning of my illness I have had symptoms of chest pain, chest pressure and heaviness, often unable to hold up a newspaper, sore chest rib muscles and diaghram. I have had stress tests and cardiac monitoring and apart from a mild and apparently harmless mitral valve prolapse there is no cardiac malfunction.

When I take some drugs they cause a reaction where these symptoms are much worse and I get laboured breathing as well. I believe that for me it is a neurolgical and immunological reaction rather than a cardiac problem and wonder if this is the case for you too.

 

[Daffodil]

anne thank you. this is exactly what my ID doc said..that he feels the cardiac problems are neuro related. maybe the affects of AZT on the virus in the CNS is doing something?

but the pain becomes so intense, i just know something very bad is about to happen. also, i have read about cases where people with HIV on HAART just die of massive heart attacks, despite all normal cardiac testing. on autopsy, their cardiac tissue shows striations or something....basially little holes..muscle damage...and after this long of untreated infection with IL-8 through the roof, i find it hard to believe there wouldnt be some atherosclerosis going on. our endothelial cells are all messed up...i dont know what i am talking about...but its just scary lol also, heart failure is the #1 cause of death among CFS patients.

about the rituximab, doesn't the body begin replenishing the B cells right away?

 

[redo]

I thought I shouldn't derail this thread, so I posted the reply here.

 

[Charles555nc]

O I just got an email that reminded me to warn others about seeing Dr Lapp and Dr Black of the hunter hopkins center because of my bad experience there:

I saw Dr Black (from the Hunter Hopkins Center where Lapp is) she was TERRIBLE. She talked like a cheer leader, provided zero information, burned through our 2 hours of 1 on 1 time rambling about all the things Drs dont know about chronic fatigue, the secertary misquoted the test costs then lied about it afterward to my face, and, in the end, she refused to prescribe antiretrovirals. I went there for ampligen treatment but was turned down because I had a positive ANA test. I cant speak for Dr Lapp, but the rest of them are scum, in my opinion. Theres actually alot of chronic fatigue centers who charge horrendous up front fees and use the same vague study on chronic fatigue to "prove" that their methods work. If you really try and cut through the bs- their wisdom comes down to, and I quote, "pacing yourself". Such wisdom for over 900 dollars.

Back on topic: Have an appointment out of state to try and get retrovirals officially next month. The drive will be an epic test.

 

[aquariusgirl]

I spent $3,000 seeing dr Lapp back in 2005. (some of that was covered by insurance.)
what a freakin' waste of time.
He couldn't even give me a cfs diagnosis. Told me to take coq10, change up my sleep meds & pace myself.
Ha, I should have stayed home.
I just spoke with another poster who had a similarly disappointing experience there.

 

[Charles555nc]

Its stuff like that, that meets my requirement for going to hell. Someone should really get their licenses.

 

[heapsreal]

I think most people can get all the advise they need here, just need to find a good doc who will work with you not for you and prescribe the tests that u want and treatments, basically someone to bounce ideas off, its called driving your doctor, if they understand cfs your halfway there.

cheers!!!

 

[Anne P]

Daffodil I too feel intense fear about what is really happening when my symptoms are extreme. We need answers so very much (the understatement of the year?).

Anne

 

[Daffodil1]

hi all i cannot log in with my usual name so if anyone has sent me a private message, sorry about not replying.

sue

 

[undcvr]

I spent $3,000 seeing dr Lapp back in 2005. (some of that was covered by insurance.)
what a freakin' waste of time.
He couldn't even give me a cfs diagnosis. Told me to take coq10, change up my sleep meds & pace myself.
Ha, I should have stayed home.
I just spoke with another poster who had a similarly disappointing experience there.

Doctors that treat CFS patients are a joke. We as patients should really keep tabs on them and hold them accountable to the patient. It happens in other areas of practice too, but especially in cfs, they have forgotten that they are doctors becos they want their patients to get better. They have forgotten what they actually got into this profession for. It has become all about the money.

It is time they become accountable to patients. How about NOT taking our money until we actually ARE better ??? Is that so radical ? At least that means they have to learn something while trying to get paid. Otherwise, the other way round, makes us, PWC, losers (both figuratively and literally) as well as time wasters. They cannot keep getting away with this.

 

[citybug]

Sue, have you tried wearing a 25-35 dollar heart monitor wrist watch and chest strap? I have less chest pain since monitoring, makes me sit down all the time or lie down. can do a lot of work while sitting and maintain low heart rate, soon as standing goes up, and walking sky high. I can see it relates to my brain feelings, but best is cuts down on that about to die feeling. Just reducing the number of heart beats saves atp I figure (and keep under aerobic threshold)
Some electronic things set off wierd numbers. On good days you can see it stays lower for longer.