Antiretroviral Trial

[citybug]

I watched a video online of Marcus Conant talking about HIV. He said they had 28 drugs now so wasn't worried about resistance if people started drugs earlier (which reduces contagion).

Maybe later we'll have more for xmrv, also the mutation is slower.

Sue, do you think there could be a cycle where you feel really terrible right before you feel better? Maybe the cytokines increase inflammation, then accomplish something? The resting makes sense to me.

 

[Charles555nc]

So while I was on the bike test at my last appointment, my blood pressure went to 170/120. It slowly came down over 30 mins. Since then I've had heart pressure and palpatations and tingling in a massive area of my chest. My back pain went off the charts also.

I was so very concerned that I might suddenly die of a heart attack (i'm 30) that I went back on benicar- I took when I was on the marshall protocol-which is supposed to reduce inflamation. After the last two days- it seems to have really helped my heart and back pain.

What started this mess? I started rapidly deteriorating after being on lysine, glutamine, vitamin A, and B1 for about a week and a half. About three pills of lysine and glutamine and a pill each of the others, a day,-so nothing massive. I lost alot of weight, passed out, rage attacks, severe back pain, unable to sleep. After I passed out, I went off of everything but zinc and started recovering and sleeping better.

I dont know whether this sudden scary down turn could be immune reconstution syndrome from the lysine and glutamine. I actually was getting better and better the longer I was off them. Until the bike test, which had my chest hurting in a really scary way.

I looked up heart problems and immune reconstution syndrome and heres an article I found:

http://www.mayoclinicproceedings.com/content/83/11/1275.full

Guy recovering from aids (increasing cd4 cell count from HAART) dies because of massive inflammation from his recovering immune system despite all the advanced cardiac techniques available. They think it might have been residual cmv infection that caused the massive over reaction. His spinal skeletal muscle, lungs, and heart were largely effected. I had severe back/chest pain...

 

[Daffodil]

citybug..regarding the cytokines and eventual improvement..yes i always think that...but i still cant seem to be ok moodwise when i am ill. it feels so bad, like the illness is back 100% all over again and i just get so discouraged.

there would be no cytokine reaction with HIV this long into treatment, but perhaps this virus, being more tissue-bound, is different? maybe it takes a lot longer to be suppressed...i just cannot tell.

it is a week or so before my period and once again, i feel horrid. all inflammation is back...brain fog is terrible...IBS acting up....and chest pain. ARGHH

i dont remember anyone who has improved, on any treatment (ampligen valcyte, etc etc) ever tell me that there is this much fluctuation. usually the improvemen is slow but keeps moving forward. i do not know why i am so different.

i am so worried that stopping AZT will ruin everthing.

love
sue

 

[illsince1977]

Did the chest pain precede treatment? My recollection, which is decidedly bad these days, is that it started after you began Tenofovir. Do you see it as part of your CFS presentation that you hoped would resolve if treatment was effective in reducing inflammation, or as a side effect of the ARVs?

Excuse my confusion. I'm always confused about everything lately!

So sorry you're not feeling well. You're still my hero - not that it's any consolation! My thoughts are with you.

 

[citybug]

Quote
http://www.mayoclinicproceedings.com...3/11/1275.full Guy recovering from aids (increasing cd4 cell count from HAART) dies because of massive inflammation from his recovering immune system despite all the advanced cardiac techniques available. They think it might have been residual cmv infection that caused the massive over reaction. His spinal skeletal muscle, lungs, and heart were largely effected. I had severe back/chest pain...

This article made me think, maybe the chest pain is inflammation, like the brain. Maybe the benicar idea (I haven't taken it, not that familiar) is a good one, taking anti inflammatories along with the ARVs. I wonder if any docs have checked that out. Also maybe it's good that our titers change slowly. That poor guy in the article, at least he was being checked out, seems he had multiple events and they couldn't do anything. Maybe I better check CMV.

Sue, the patients doing chelation seem to go through a very bad time to me.
I just read something about hormones but I can't find it.

 

[heapsreal]

cycloferon i am using has effect on the immune system and is used for HIV and CMV and is said to have anti-inflammatory effects, maybe this is why its used with ARV's and AV's in eastern european countries.

 

[Daffodil]

im really sick.

 

[leaves]

Sorry to hear it sweetie. You know by now that you fluctuate quite a bit. You will feel better, hang in there and be kind to yourself.

 

[Daffodil]

hi all. thanks for the kind wishes. i received my MIP results so i am posting them here:

MIP-1a: 1571.3 (normal range: 169)

MIP-1b: 3264 (normal range: 304)

 

[Daffodil]

hi again. still in a decline and feel pretty bad. lots of inflammation, particularly in neck and head. very worried that this won't work without the AZT because i think all 3 are needed to penetrate all tissues...but no one knows for sure.

if anyone out there is seeing klimas, does anyone know how she is thinking of treating this? she said she would not be using AZT....

thanks
sue

 

[Charles555nc]

My ANA levels came back positive, but hemispherix still hasnt made its mind up of whether I will be able to try ampligen. I am not holding my breath, I dont think I have any chance of trying it.

My tricylcerides are in the 500s and my blood pressure is still high and my body is attacking itself...

Im still desperately pursuing a doctor (practically any location) to try the antiretrovirals...charlesbeutt@gmail.com. Please.


-Charles

 

[Daffodil]

i woke up today with the realization that the azt was definitely helping a lot. the kind of brain fog that i woke up with is more like how it was before i started treatment. the swollen feeling in my neck is back and there is some cramping like before. my eyes also feel watery.

this is very unfortunate. not much i can do but wait.

wonder what would happen if i take a whole bunch of cardiac supplements and then get back on the AZT. i think i would have a heart attack...the chest pressure and tachycardia was getting really bad on the AZT.

but what if that means it was working??

ugh. this is awful.

 

[redo]

hi all. i had blood sent to nevada after about 5 months on the ARV's. just got some results from VIP. NK cell function and XMRV/MLV serology are still pending.


after 2 months on ARV's RNase-L Activity Assay was 115 (normal <50).............it is now 138
after 2 months on ARV's, elastase was 134 (normal <140).........................it is now 28

this time, i also did a cytokine panel, (MIP-1alpha, MIP-1beta, TGF beta, still pending).


IFNG Interferon Gamma: normal
IL10 Interleukin 10: normal
IL12 Interleukin 12: 455.2 (normal: <240)
IL1B Interleukin 1 beta: normal
IL2 Interleukin 2: normal
IL4 Interleukin 4: normal
IL6 Interleukin 6: 28.5 (normal: <24)
IL8 Interleukin 8: 1930.3 (normal: <14)

---------

If anyone knows anything about IL8 and its significance, i would really appreciate any opinions as to what this could mean. thanks!

Do you have any earlier IL-8 measurements?

As I am sure you noticed, Snyderman got a spike in the IL-8 levels when he was on ARVs.

It could be that the spike in cytokines are what could be from a cytokine release.
Http://forums.aboutmecfs.org/showthread.php?5250-Starting-Raltegravir&p=114035&viewfull=1
(I know it says if RAL is used alone, but I wrote release and not storm

High pro-inflammatory cytokine levels can cause inflammation.

 

[Daffodil]

hi redo. thanks

i did always go up and down on the meds...a lot of inflammation for several days, followed by 2 days of bliss. but since i stopped the AZT, i have only declined. also...it feels different. the illness has a quality more like before i began the meds.

there are some supplements that might help when one is on AZT and dr. deckoff-jones took Actos before she started the ARV's. if my doctor lets me try Actos, and i load up on those supplements, maybe i can give AZT another shot....but it was pretty scary with the heart symptoms.

but can AZT affect the heart that quickly? i was on it less than 6 months.

maybe it was a kind of IRIS.

maybe i dont even have XMRV but a related retrovirus and AZT is the only drug that works on all retroviruses!

ARGH....too many unknowns and i am at the end of my rope again!!

 

[redo]

I know how you feel. It's not easy to know what to do. Doing nothing is a choice just like doing something is a choice. It feels so hopeless to try to get that simple thing through to people, especially in the medical field. Having no choice over my own health, except the right to deny a treatment, feels unworthy. And going on for years and years without some kind of plan except waiting isn't the way I want to go.

I can only tell what I think, and take it for what it is. I think the (pro inflammatory) cytokines are bouncing up as a result of the ARVs, but I have no way of knowing for sure. I think a lot of the symptoms, including the heart symptoms come from that. Cytokines can vary from day to day, and they can (among other things) rise/decline as a result of exercise. Some think that's the reason for the PEM.

I am trying to find out what to do myself. I might very well do a course of Rituximab. The B-cells produce cytokines, so "booting" the B-cell system might be a way out of this.

 

[redo]

I just want to add, with RA people get a spike in various cytokine levels as a result of the Rituximab, but they get a decline in immune complexes. The spike is measured some weeks after infusion, so I don't know of any data on it further down the road.

 

[redo]

Have you tried Aspirin daffodil? That has helped me somewhat in reducing what I would desribe as inflammation symptoms (non pain related, but heart and brain)...

Do you remember where I can find Mikovits' recommendations for "supportive/supplemental" treatment. I remember she mentioned that some things might be helpful, and she made a short list, but I can't remember where.

 

[Daffodil]

hi redo. thank you for caring do you have a doctor whom you think will prescribe rituximab?

i expected a spike in cytokines but not 6 months into the game and not like this. i'm really bad right now and no one can tell me anything. what a place to be.

out of 28 HIV drugs only 3 worked. what rotten luck. God forbid they fast track something. Even if they do, i dont even feel like i will survive!

xox

 

[Daffodil]

you know whats weird? i still really want to kill myself, but i want to claw my way out of this CFS mess before i do. its just caused me so much trouble, i DESPISE it.

 

[redo]

I have asked, but got a no. It's not easy to know what to do. I can't continue life like this.

Getting a spike some months in is what snyderman experienced. I guess you've seen the graph from the last column in his power point presentation (if not, then check .

I think you're flare is the same as randalbond has experienced, only with differences in the symptom expression.
http://forums.aboutmecfs.org/showthread.php?7189-My-experience-with-ARVs

I think it's a cytokine release problem, and a autoimmunity because the virus gets more active. As you know, it's just a hypothesis... But that's what I think.

I agree. God forbid they should fast track something... Ten years down the line, then maybe... That's how they operate. And I doubt they have people working on it around the clock. I think it could be done quicker if it was just prioritized...