Antiretroviral Trial

[Daffodil]

hi all! on a bit of a downhill slide again. i can feel the brain swelling up again and have not been able to sleep much the last 2 nights. also, have been having indigestion - a feeling that none of my food is being digested at all. just feel so bloated.

still, i now know the meds have got to be working because the good days i had were better than i have felt in several years. still a very, very long road ahead.

sue
xoxo

 

[redo]

The reason I brought up cortisol is because it helps with people who experience a inflammatory reason when undergoing HIV treatment.
So I guess it could also be helpful for the symptom flare when doing XMRV treatment.

Inflammation is a central part of CFS, so I guess it could become even more central when the body is getting inflamed from the inside when undergoing treatment.
I am thinking about doing some 5-15 mg for a little week. Begin low and see if it helps, and adjust upwards if it doesn't. And drop it after a week if I don't see any effect from it. That's what I am thinking about.

 

[leaves]

Hey Sue,
Maybe you can start the enhansa and quercetin with bromelain ( if your doc agrees) for the swelling? Xoxo

 

[ukxmrv]

Sue, that's really unfair! To have a short goodish period and then that taken away by a return of the swelling etc. Really happy to hear that those days were better than in years! Gives me a lot of hope - for the both of us!

 

[Daffodil]

uk no no dont be sorry for the downturn. i fully expected it. this is how we improve, i think. i think its going to take years with just ARV's....i have just been sick too long. they will have to come up with something better.

thanks leaves. i will ask my doc. i am sort of scared to ask him for anything...sometimes i get the feeling that he wants to stop the meds...but i will not do that now!

 

[energyoverload]

Hey Sue,

My brain can't seem to remember - are you currently taking Raltegravir in addition to AZT and Tenofovir?

Thanks,

Jake

 

[Daffodil]

hi energy. sorry i didnt know i had a question here. yes i am on all 3 drugs.

yesterday i went to walmart (against my better judgement) and shopped quite a bit. i remembered a lot of things i had to buy w/out repeatedly checking my list. that would have never happened before. in fact, sometimes i would walk into a store, not remember why i came, and walk out!

so...definitely still pretty sick and but small changes occuring.

sue
xoxo

 

[leaves]

yay Sue,
So happy to hear about these little changes.
Also... you sound ...different.. more 'chill'
is that just my interpretation or do you feel better in the emotional domain too? Could it be because of reduced inflammation? lower viral level? Did you introduce a new supplement?

Anyhow, hang in there!

-Hugs-

 

[Daffodil]

hi leaves. no i havent started anything new. i dont want to sound too thrilled yet. there is less inflammation most days, that is for sure. but if i push myself even a little, my heart races and i feel close to collapsing. i honestly thought yesterday's trip to walmart might end badly because i wasn't well to begin with, because i cleaned the toilet the night before. the chest pressure and ache was there, as well as intense malaise.

so...still a very very long way to go. just small changes that are now making the illness tolerable.

sue
xoxo

 

[Daffodil]

no one seems to be noticing my other thread so i am reposting here...LOOK at the powerpoint presentation that is on dr. deckoff-jones blog!!!!

http://treatingxmrv.blogspot.com/

 

[Peggy]

AZT and mitos/heart

I hope I'm not repeating myself, but I wanted to ask if you had done any mitochondrial testing (Dr. Myhill's Acumen tests, or the metabolic analysis profile test) or heart testing (i.e. impedence cardiography, 24-hour Holter monitoring to see if you have Lerner's cardiomyopathy signs, Cheney's echo protocol, etc.)?

It seems important to ask since you're having the heart symptoms. In theory, because of its mitochondrial toxicity, AZT could make ME/CFS heart issues worse. So I think it's esp. important for those considering these drugs to know if there are any patients on AZT who have known mito or heart issues related to ME/CFS who might be experiences positive or negative changes in those symptoms (or mito/heart testing).

I think I might have asked about this already but since AZT continues to seem like an important drug in this regimen (the poster presentation you posted definitely indicates this too!), I wish we could know more about how it affects the mitos/heart in ME/CFS.

 

[Daffodil]

peggy i spend a lot of time worrying about this now. my chest discomfort has been getting worse. i just grated some carrots last night - thats all i did all day - and today my chest has ached all day. i wouldnt be suprised at all if i have a heart attack.

i went to lerner for almost 2 yrs in 2008 and 2009. i had repeated holters and echos. i had mitral regurgitation but i think thats all that showed up. i will have to dig the tests up.

i think i will ask my current doctor once again if he would refer me for a cardiac workup. he didnt seem to think this was necessary but i am really starting to worry.

i wonder if there is somewhere i can get the mitochondrial testing done here in canada?

thanks for posting
sue

 

[BrightWorld]

Sue,

You're so brave to attempt this. I also push until my alarms go off that if I go further, I will be in the hospital. Something that has helped me with extreme detox causing heart issues has been making sure my electrolyte levels are okay. It seems like the body can get out of balance in a hurry when in detox mode.

For a quick solution, I mix 1/8 tsp. Sea Salt and 1/8 tsp. Salt Substitute (potassium) in a 16 oz bottle of water and sip on it. That usually takes some of the edge off. Might be worth a try. Be careful.

Best wishes,

BW

 

[Daffodil]

thanks BW! what about gatorade? would that be good?

 

[heapsreal]

hi sue, might seem like a silly question but does iburofen help your chest pain? sometimes with viral infections can dry out the layers between your heart which are normally lubricated and this can cause pain, like pericarditis. Also there are alot of muscles around the ribs which could easily cause alot of pain, maybe fibromyalgia too, anti-inflammatories also may help with rib pain. If something is directly affecting your ticker it should show up on an ecg. do u take any pain meds for it, tramal is a good one but depends on the meds your already taking. Maybe even a chest x-ray as the same thing can happen to your lungs where the lining around your lungs, its like 2 layers on top of each other, dry out and rub causing pain and because im having a brain fart, i cant remember what its called, ah got it pleurisy.

cheers!!!!

 

[BrightWorld]

thanks BW! what about gatorade? would that be good?

Sue,

If you can tolerate the sugar, Gatorade would be easier. I don't like to feed the yeast/virus beastie any more than I have to, so I prefer to mix my own brew. :Retro tongue:

Another something simple to do - that's kind of easy to forget to do when you're fogged to the max and nailed to the bed/couch- is to hydrate well given that we (PWCs) have low blood volume. I force myself to drink 32 oz. of the unsweetened electrolyte mix every morning. This is actually an old Dr. Cheney suggestion that I've used for a long time. I think he called his brew- Gookinaid, or something like that. Or maybe it was someone else's brew that he recommended.

BW

 

[Daffodil]

hmm sounds like a good idea. you are right...when i am very foggy and weak, i dont even seem to get that thirsty so it is hard to keep up with hydration.

i have gotten so many suggestions on things to try ... i will forget the vast majority of them i am sure. i feel so out of control with the fog.

still, i am better on the drugs.

thanks
sue

 

[citybug]

hi daffodil,
I have some of the same heart symptoms, but not racing. Chest pain and paying for a little cleaning. My gyno suggested trying advil or aleve 3X a day for a week in case chostochondritis (also have some estrogen cream, and some doxy for week each to test other options).
I also think I need to replenish minerals and fluids. I went to a cardiologist and he told me to exercise, and try therapy. I was positive on Lerner's 24 hour monitor but not for his viruses a few years ago, and on impedance testing.
I think antiinflammatories are worth a trial, they help keep xmrv from reproducing. Even if you don't stay on them, if they worked you would know more. Anyway be careful, I say don't push too hard on good days.
heapsreal what is the heart layers lubrication thing called?

 

[heapsreal]

hi citybug, peri-carditis is the infection that can cause problems between the layers of the heart.

 

[Daffodil]

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)

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