Antiretroviral Trial

[heapsreal]

hi omer. cancer always pops up in my head lol....also, an integrative doctor i showed my cytokine results to, suggested some kind of tumor test "MMP-9".

i have been looking for old information about montoya's original valcyte trial..i think the HHV6 antibodies spiked in patients after a certain amount of time on the drug...but i cannot find out when this is supposed to happen. does anyone remember?

i think i do feel worse on valcyte...my brain fog is horrible and the old familiar neck pain and cramping, along with radiation into the right shoulder and upper back....but maybe i was this bad before..i just cant be sure about anything.

i would love to have regular herpes virus antibody testing but i can't get any reliable testing here. my doctor said they recently stopped doing HHV-6 antibody titre tests here. i used to sometimes send blood on dry ice to Specialty Labs but i dont know what happened to their HHV6 titre test...it is no longer on the test menu.

thanks for reading!
sue
xoxo

Hi Sue,
Another alternative for testing herpes viral titres is to get a lymphocyte sub set test. CD8 lymphocytes are commonly elevated in herpes infections like ebv,cmv,hhv6 etc, it wont tell u the specific infection but can be used as a guide. It should be relatively easy to get the test as its commonly used in HIV and other immune compromised conditions.

cheers!!!

 

[Daffodil]

omer...thanks i may have missed it...but i couldnt find the info i was looking for in the video. i think dr. montoya said that at some point during treatment, the antibodies spiked, indicating that perhaps the immune system was now "seeing" the virus. i wanted to know when that happened...but its not too important since i cannot easily get that tested anyway.

heap..thanks for telling me know! unfortunately, my CD8 was normal/low after a year on the HIV meds...and i think it has always been within normal limits the few times i have tested it.

i keep remembering how good the AZT felt many months ago, when it really started to open my brain up. it was like a miracle..like someone had turned the lights on after 19 yrs. just heaven. i felt like i could take on the whole world. but this didnt last more than 2 days, and then it stopped working.

i cant believe people without this disease feel like that everyday and just take it for granted! it was like seeing for the 1st time..incredible.

 

[jstefl]

Sue:

I have been reading your posts for a very long time, but haven't replied in the past.

I admire your desire to get better, and live like those without this disease. I think that you will see many improvements with the Valcyte, but it will take a little while yet. I took Valcyte for 8 months, and that was the the best thing that I have done so far. The improvements from Valcyte became really noticible for me in my fourth or fifth month, and kept getting better.

Valcyte really improved my heart and took out most of the brain fog. It also greatly reduced the headaches that I was having. I still have some remaining problems with fatigue, but Valcyte made life tolerable for me. Without it, I really don't know what would have happened. Now, I can do things without having to fight thru the pain and the fear of how I would feel the next day. I need to pace myself carefully, but my world has become much larger than it was before Valcyte.

I hope that good things come your way also.

John

 

[Daffodil]

John thank you i am so glad the valcyte did so much good for you!

the problem is for me is, i took the drug for 3 yrs and it didnt really help me. it seems to me that if it was going to help, it would have helped more back then....but i just dont know what else to try. i'm totally at a loss.

i know that some are trying GcMAF but i dont want to stop the HIV meds yet. I wonder if Dr. Mikovits has any new idea about treatment, now that she is working towards that.

my gut feeling is that i will not get any relief unless they come up with an xmrv med that gets into the brain....just hope to God i am wrong.

it just seems odd...i know that Raltegravir and Tenofovir's penetration into the CNS is not that good but some does get in. and, even though I am not on a very high dose, AZT gets in there well. so why isnt my fog/swelling going away??

 

[maddietod]

I have pretty much come up with my own theory as to what causes cfs and am kind of using it to help myself while on the AVs. Some how it starts in the CNS, it starts with us being very easily overstimulated, this stimulation spreads and stimulates our organs and glands too much. Then they fatigue and crash. All organs except the gut, our gut becomes understimulated if our CNS is overstimulated. I can kind of make sense if u think about the fact that our brain, CNS and gut were formed from the same cells while we were still embryos.
Our gut becomes understimulated and it results in gut issues.

Immune system is over stimulated and shifts towards Th2, it starts to attack everything, organs, gland, etc, the autoimmune issues.

When this happens, reduce histamine levels in the body.

It is all about our bodies and personalities being prone to overstimulation i think.

Do you think it might be helpful to take an antihistamine, like benedryl, in the mornings? I don't use any medications, so I'm curious about other ways to test this idea on myself. I definitely overstimulate easily.

 

[Daffodil]

hi madie. i dont know anything about antihistamines.....are they sort of like steriods?

 

[Daffodil]

im thinking that the pain and burning in the back of my neck could be xmrv and not herpes viruses cuz with hiv encephalitis, i think most of the hiv hangs out there as well

for people who cannot take high doses of AZT (hiv dementia requires about 1000 mg a day), they sometimes directly inject the drug into the spinal canal. i wonder if the WPI would consider doing that?

 

[jstefl]

Sue:

It is so hard to know what to do when there is no good information out there. I went to the HHV-6 conference in Baltimore three years ago, and heard Dr. Lerner say that he kept patients on Valcyte until they got better. At that time, he had at least one patient on Valcyte for 6 years! I have heard that that patient may still be on Valcyte. Why does it work more quickly for some than others?

Why do ARV's work better for some than others?

How many different types of CFS are there?

What meds are being developed that we haven't heard about lately?

When will we get medication for enteroviruses?

I keep thinking that things could be much worse, we could have a fatal disease for which there is no hope. We could be suffering a lot more than we are, or be dying a very slow and painful death. Our plight is bad, but certainly not as bad as it could be. I see more to be hopeful for than ever before, and I see us getting closer to having real answers. When I went to the Reno conference two years ago, XMRV was unknown. Now at least it is a hot topic of discussion.

Hang in there a little longer, and you will be rewarded!

John

 

[Daffodil]

thanks john, i can always use a pep talk

there are a lot of things on the horizon....cmx157...and other things....look at this new brain delivery system for drugs:

http://www.cchmedicalpolicies.com/medicalpolicies/policies/mp_pw_a053521.htm


just not sure i have that long left to wait

 

[jstefl]

Sue:

I got an email from an old friend two weeks ago asking about CFS. After getting an MRI, he was found to have a brain tumor. I'll take the CFS any day over a brain tumor.

When I go, I want to go feeling that I did everything in my power to have stayed a little longer. I can see that same determination in you. I believe that you are doing your best, which seems to be pretty darned good, and that success will come your way. You have a head start on most of us, so you will probably get there sooner.

Remember, attitude is everything.

John

 

[undcvr]

I have pretty much come up with my own theory as to what causes cfs and am kind of using it to help myself while on the AVs. Some how it starts in the CNS, it starts with us being very easily overstimulated, this stimulation spreads and stimulates our organs and glands too much. Then they fatigue and crash. All organs except the gut, our gut becomes understimulated if our CNS is overstimulated. It can kind of make sense if u think about the fact that our brain, CNS and gut were formed from the same cells while we were still embryos.Our gut becomes understimulated and it results in gut issues.

Immune system is over stimulated and shifts towards Th2, it starts to attack everything, organs, gland, etc, the autoimmune issues.

When this happens, reduce histamine levels in the body.

It is all about our bodies and personalities being prone to overstimulation i think.

"Do you think it might be helpful to take an antihistamine, like benedryl, in the mornings? I don't use any medications, so I'm curious about other ways to test this idea on myself. I definitely overstimulate easily."

I do take antihistamines too and I feel that it helps. At one point going thru relapses I would wake up every monrning and sneeze, everyday for months. I also think that for PWC the histamines also come from our foods or maybe our gut is too weak resulting in food intolerances and sensitivities that leak through our gut and into our bloodstream where our immune system recognise it as a foreign object, over attack and produce histamines to it. Another theory is that the histamine IS in the foods that we eat themselves. It probably is, I am not sure, but I do know that taking Betaine and Pancreatin daily and alot helps me very much.

Overstimulation begins in the CNS so try and defend that system too.

Daff, do you think the induction dose of Valcyte helps ? Valcyte didnt do anything for me either at the regular dose. I had to double it and I am taking a few more AVs too not just Valcyte.

 

[Daffodil]

hi und. maybe i will look into antihistamines. i am not sure if the induction does helped but i did take it. my liver can't handle a larger dose...and with dr. lerner, i had to stop the medication altogether because of liver enzyme issues. that's why i stopped seeing dr. lerner and just took the valcyte on my own. i am sure i will have liver issues soon. i actually forgot about that till just now lol

i do remember dr. lerner having patients who were on larger doses...and i remember a woman who was on valcyte for 6 yrs too....she is the wife of the boss of the mother of a friend of mine.

i need a good old fashioned spinal tap (or 5). if a known virus is found, the gov't here will have to help me - i think. i would love to try cidofovir.

 

[jstefl]

Sue:

Have you had the Valcyte levels in your blood tested?

I had a conversation with a doctor who told me that he had a patient on Valcyte, and that it was not getting into the blood like it does with most people. He had to give his patient an intravenous version of the drug.

John

 

[Daffodil]

hi john. yes, the last time i was on valcyte i had the levels tested and they were adequate.

if only i had been more religious, none of this would have happened. i wouldnt have kissed that azzhole and gotten this. this is just my fault. my whole life is ruined now and i did it. o God why

 

[jstefl]

Sue:

We all got it one way or another, and many of us may have spread it to family and friends without knowing that we did.

Spend the rest of your life looking forward, not back.

John

 

[TheMoonIsBlue]

hi john. yes, the last time i was on valcyte i had the levels tested and they were adequate.

if only i had been more religious, none of this would have happened. i wouldnt have kissed that azzhole and gotten this. this is just my fault. my whole life is ruined now and i did it. o God why

You didn't do it. There are prostitues that have possibly had sex with thousands of men, and people who routinely have unprotected sex with people they barely know, and people who shoot up drugs into their veins, and they don't get this illness. I mean seriously, there are people living such...depraved lifestyles....and they don't get sick! And I mean seriously, how many young people get mono? Many. 99.9% don't get this illness. And how many people kiss people who knowingly have the flu, or are ill? Or even have sex with them? A lot! They don't get this illness.

You could have been a nun, living a nunnery, and have gotten this illness...because of Genetics.

It is nothing but Genetics- and Genetics, we have no control over. None of us. Please don't play the blame game. <Hugs>

 

[Daffodil]

thanks guys. sorry..was having another episode :-/ i have them less now. its been so long, the disease is mostly a part of me now.

people who spent years as a prisoner of war...or in a concentration camp...how do they come to terms with what happened? cuz thats what this has been like for me. its that bad.

 

[ukxmrv]

Sometimes Daffodil, I feel as if I have been in a war for the last 28 or so years but no one else knows about it.

 

[Daffodil]

uk...me2. unreal.

i dunno...my cytokine profile is completely different now...i wish there was someone who knew all about cytokines. i just have a little money left now, so i am reluctant to seek out help in the US cuz the next trip will likely be my last chance.

 

[Daffodil]

lol yes. i can very much relate. even if i get well one day - big if - i am worried i might spend the few good yrs i have left being bitter about everything that has happened to me. i might just focus on all the loss. its just been so brutal! i mean..i know i will be ecstatic to experience clarity again..but i wonder how long the happiness will last.

re: intereferon gamma, i read this:

Cellular effects of IFN-gamma are described, including up-regulation of pathogen recognition, antigen processing and presentation, the antiviral state, inhibition of cellular proliferation and effects on apoptosis, activation of microbicidal effector functions, immunomodulation, and leukocyte trafficking.

i also read that as HIV progresses to AIDS, this cytokine becomes low...and during immune restoration on HAART, it gets higher (but not sure if they meant higher than normal).