My AZT + RAL Trial

[alphahusky]

Yesterday my doctor talked positive about Ral, not AZT. But he said when the pregnancy is over, he is willing to get more aggressive. However, he said he's waiting for "the dust to settle" after the three negative studies, though I did talk to him about cohorts, etc. He didn't disagree, he personally believes I have XMRV he just wants to wait until the testing is more accurate but he seems open to trying anti-retrovirals once I test positive.

 

[alphahusky]

hi everyone. thanks a lot for the great suggestions. i will ask for more bloodwork.

my heartrate seems to be less today. i measured it a few times and it was in the mid-80's. my fear is that the fact that it is slowly normalizing now that i have been off the Raltegravir for a while and even though i restarted AZT yesterday, will prompt the doctor to tell me not to take Raltegravir at all.

i hope that doesn't happen because I feel pretty bad right now and the RAL helped so much. even after 2 days i could feel the malaise and fog just dissipating. it was so wonderful.

if worse comes to worse i will suggest half the usual RAL dose.

i wish there was a way to know if the cardiac problems were related to viral "die-off" or immune reconstitution or something, because the CFS was really getting much better.

love
sue

I think Gerwyn said the heart stuff is more likely due to AZT. Maybe the combination made it so bad. My doc wouldn't do AZT, but he is open to RAL in the future.

 

[jimbob]

thanks for posting that video Kati, it just assures me even more about Ral. I really hope I hear back from Merck soon!

 

[Rrrr]

hi all.

alpha....i just dont think 300 mg AZT would be that harmful, especially in light of the fact that i was on it for over a month before the tachycardia started. also, i stopped it and the heart thing continued. my bloods were normal, too. i wouldnt be surprised if low dose AZT had a bad effect after a year or 2 of taking it though.

i asked my doc if i can restart RAL and he said yes - weird!

i must say..i feel really strange. my legs feel funny...and the restless leg thing at night is really intense. i cannot sleep one minture. i have tried stretching, massagiing my legs, even hitting them!. also, my heart doesn't feel quite right and is still tachycardic.

MS has always been a fear of mine so of course, i keep thinking i am developing that. my brain MRI is scheduled for June (canada :-/). i will pester them and get in sooner on a cancellation, though.

oh well at least i get to take RAL again lol

love
sue

congrats on the RAL!!! why is yr doc being so good about this? and what does he/she say about the restless legs and heart issues???

rrrr

 

[Kati]

Rrr...i have no idea why he is being so good about it. i dont even have a positive XMRV test. and this is canada too. it's like divine intervention or something!

Sue, it's because people without a retrovirus and false illness beliefs don't respond to antiretrovirals. You are just one step ahead of science, that's all.

 

[natasa778]

Just had another thought on why RAL might be causing problems - Kidney clearance?

Quite a long shot but worth considering imo. Especially as it would be a simple explanation and relatively easy to remedy... (sorry if it has been discussed here already)


First a question: is RAL in the form of potassium?

If yes could taking it simply be causing electrolyte imbalance (same as taking pure potassium supplement could). This is for example very relevant if kidneys are not clearing well, for whatever reason...

have a look at this

"...potassium supplements or food high in potassium tend to have rapidly increasing potassium levels because their kidneys cannot get rid of it fast enough (nb: this could be down to either something else you are taking, or "just" part of overall ME-linked health issues...). They should stop taking the potassium supplements and change their diets. In some cases drugs that speed up the excretion of potassium are needed. Those with abnormal heart rhythms may be given calcium intravenously..." http://www.medicalnewstoday.com/articles/153188.php

does this sound like a plausible explanation?

If yes I wonder if it would be worth taking some calcium and/or magnesium alongside RAL... how do you do on those supplements anyway? Anyone you can consult with on this?


Also restless leg/muscle twitching is another sign of electrolyte imbalance (fluctuating potassium levels could be involved...)

 

[jackie]

sue..not sure which viruses you have (or have been tested for...sometimes even "normal" testing won't show the ones we have)...but the enteroviruses can most certainly affect the brain (as well as the heart - which is why it's important to keep any tachycardia in check, if possible. I take atenolol and that works for me). Also the herpes viruses (vzv/shingles for example). And one can be affected by shingles - without seeing the classic rash! (the virus can be in lymph nodes as well as the dermatomes)

For what it is worth...my cognitive/memory probs are very much improved (from not even being able to read, write or string a few sentences together! just 2 yrs. ago) and I have had brain/heart involvement with my viruses. So...if an improvement can happen to me, it can happen to you!

I was despairing and had given up hope, as my impairments were pronounced enough to be labeled "MCI" (a possible pre-cursor to dementia and alzheimers) by my Neuro - until I dramatically improved...and the dx was removed.

Don't give up and hang in there!....jackie

 

[dancer]

Jackie, was there a particular catalyst for the cognitive improvement?

That's been the MOST distressing issue for me, and continues to be "stuck" at very low function for me.

 

[SunnyGal]

Jackie,

Can you elaborate on why you say it's important to keep any tachycardia in check? I have lots of viruses (positive for many via blood work and many more via energetic testing) and I have brain and heart issues as well. Fatigue is my other biggest symptom which my docs all say is from the viruses.

I take propranolol for my tachycardia which works well but I often skip it (forgetfulness) and often wonder how bad that is to let my heart rate go up some.

Also, what treatment did you do to gain your improvements? (Sorry if you've already posted about this.)

Thanks for any insight, Sunny

sue..not sure which viruses you have (or have been tested for...sometimes even "normal" testing won't show the ones we have)...but the enteroviruses can most certainly affect the brain (as well as the heart - which is why it's important to keep any tachycardia in check, if possible. I take atenolol and that works for me). Also the herpes viruses (vzv/shingles for example). And one can be affected by shingles - without seeing the classic rash! (the virus can be in lymph nodes as well as the dermatomes)

For what it is worth...my cognitive/memory probs are very much improved (from not even being able to read, write or string a few sentences together! just 2 yrs. ago) and I have had brain/heart involvement with my viruses. So...if an improvement can happen to me, it can happen to you!

I was despairing and had given up hope, as my impairments were pronounced enough to be labeled "MCI" (a possible pre-cursor to dementia and alzheimers) by my Neuro - until I dramatically improved...and the dx was removed.

Don't give up and hang in there!....jackie

 

[jackie]

Hi Dancer! (sorry everybody if I'm hi-jacking...i'll be brief!) Well, I started on long term acyclovir (meaning for life) about 4 years ago at a starting dosage of 1,200 mgs per day titrating up to 2,400 within 6 months. I stayed at that dose for another 1.5 years...and then "bit the bullet, so to speak!, ramping up to my present 3,200 mgs per day. I didn't stop, or taper or even take a break. I determibned to get on it and stay on it - until I could no longer see any improvement (many times I thought I had lost my mind, of course...and second-guessed myself constantly as to whether or not I REALLY was feeling any progress)

But I strongly believe it is paying off, now! At the "two year mark"....I began to notice a difference in the way my brain functioned. I found I could read again (previously a voracious reader!), and last year I discovered that I could also WRITE! I can mentally multi-task a bit (and this was beyond me, before)

The best part is that I can once again engage in a "lively discussion" (my name for a friendly argument!) with my husband...and win! (Arguing with me was like shooting fish in a barrel, before.)

And because I still have most of the PHYSICAL symptoms that I've always had with me/cfs (pain, sore throat, swollen glands, gastrointestinal, chronic re-activated shingles (most important), pem etc.)...I know that this improvement isn't simply that I'm in a remitting stage (not very likely anyway...as I've been sick for so many years). I conclude it must be the antivirals, in my case.

My goal is to be able to lower my dose to around 800mg, eventually. I wanted my brain "back"...I can live with the other "stuff"! So much for the "brief" post! (maybe sue can use this info as well, though)

hope this helps....jackie

 

[jackie]

hi sunny (i'll say very quickly) I wish I could give you the scientific explanation for the importance of treating any tachycardia...but I just know that my doc keeps telling me that (in laymens terms) the viruses "like" the heart!...and it's necessary to keep it running smoothly....and seemed to indicate it was NOT a good thing to go untreated. He prescribed atenolol.

In comparison, my Cardiologist only told me to take the meds if/when/as necessary (more for my "comfort", was the impression I got from him!) next time I go for my apt., I'll ask for a detailed explanation and bring it back here! jackie:Retro smile:

 

[dancer]

Thanks, Jackie.
And Sue, I continue to be grateful for your updates and hope that you feel better.

 

[jackie]

Sue, thanks! me too!...I meant to add this to my last post.

I started with Acyclovir (specifically) because it's all I could afford (now I'm glad of it!).

My docs say that in the "early days" of AIDS they discovered that when they added acyclovir to patients the death rate dropped (as the AV suppressed the co-infections...such as the uncontrollable Herpes and CMV (which often caused blindness and encephalitis)

If you continue to have difficulty - do you think your doctor would consider a trial of acyclovir for you? (even though the valtrex did no good?) Did you experience wonky liver enzymes or bad side effects? (I'm lucky, as other than occasional skewed numbers, some queasiness that I got use to, and the inconvenience of 8 pills per day, I've done pretty good)

I realise that for some people, once you start...you may always need to stay on it, at some dose (one of the large studies showed that after two years on acyclovir...the symptoms returned when it was stopped. Even at my high dose I still have chronic shingles that never go away)

BTW...I'm very interested in the info posted here regarding IRIS (which I'd never heard of before). What do you think about that as a possibilty in your case? Also, did anyone try you on Interferon? (my insurance won't cover a penny of it...or I'd like to!) Maybe you will get some help when you have your neuro appt./mri.

good luck & take care...jackie (glad that the RLS is calming a bit!)

 

[SunnyGal]

Thanks for the info, Jackie. That's about the same impression that I got from my doc. Important to control the tachycardia and dose it to my comfort. I was shocked the other day when I checked and my heartrate at rest was 123 and I'd been thinking I felt fine. I think I'm too out of it to realize I need some beta blocker sometimes!

Sue, I've been following your progress daily even though I don't post and wanted to say a big thank you for sharing your experiences with us. Hope you start feeling much better soon!

Sunny

 

[Recovery Soon]

I was under the impression that anti-retrovirals (like AZT and RAL) prevent the virus from inserting itself into healthy cells.

Therefore I don't understand how it's possible for a patient to experience quick results (like those posted here), as the infected cell count is still just as high as it was prior to taking the anti-retro's.

Is this correct?

Thanks.

 

[Rrrr]

Sue,

How are you feeling lately?

thinking of you,
rrrr

 

[grant107]

Jackie, I am so sorry you have chronic shingles. I am just recovering from shingles. This is the second time I have had shingles but I am much sicker now than i was the last time. I take valtrex which is a more efficient way of getting acyclovir in the blood stream plus you only have to take it every 8 hours. In the past I found valtrex helped the CFIDs at first but needed to be stopped and restarted for the best results. This result may be due to other factors. Maybe I'll stay on it and see if I improve,

I also take topral for tachycardia. I've only had tachycardia for the last three years. After an attach I am wiped out for about 24 hours.
Jean

 

[mojoey]

Hey Sue,

Thought you might find this interesting. http://www.pabluster.com.ar/english/default.shtml

About the combination of AZT and mistletoe to inhibit HIV. Supposedly the combination has compounded benefit because mistlehoe has both immunomodulatory and inhibitory effects. I know of one product called Immunovira by Healthy Directions, an herbal blend whom the founder claims to have an inhibitory effect on XMRV. I simply don't buy that any herbal products will be able to put XMRV into latency on their own, but I think combining with reverse transcription inhibitor drugs is definitely worth exploring. I will contact her for more information on Monday.

 

[gu3vara]

I think 1 month of healing for each year of sickness probably a reasonable theory. Be we don't know if it's the right cure now unfortunatly. Those antivirals meds are stopping the disease from spreading, but the healing must be done by the body and it takes time. We will all get there someday, that I am sure of, don't give up

How long were you sick btw?

Maybe taking something that act actively to repair the damages (especially the gut) like colostrum and digestive enzymes would speed up the process. Colostrum contains growth factors that can promote healing, it has been studied. Just a hint.

 

[dancer]

Hi, Sue,
so sorry you're feeling discouraged today. I know what you mean when you have a little tantalizing taste of what brain function USED to be like... but the brain power slips away again. Argh.

I also know what you mean about feeling like you can barely remember what normal used to feel like before ME/CFS. But even the glimmer means that the brain HAS the capacity of recovering. Grab hold of that hope. HUGS!