My AZT + RAL Trial

[hensue]

Sue,
I have just seen this and been under the weather myself! I hope you do well and praying for you! I know how bad off you are and need relief. Keep us posted when you can.
Please take care.

 

[Knackered]

thanks, everyone

nothing happening yet...still severely fogged up and tired. trying to tell myself that after 17 yrs of tissue penetration with the virus, it's gotta take longer than 3 days, right?

witchywoman on patientslikeme.com said she felt improvement in a week!

i would feel a lot better if i had a positive serology test. then i would know what i was fighting.

out of the 3 patients that the wpi knows of who are improving on azt....2 of them have had CFS for over 18 yrs.

dr. lombardi had trouble with some lab equipment and had to get it repaired or replaced so if anyone's results are late, thats why.

love u guys
sue

I'm not sure I'd do what you're doing but I really do hope you start improving, if you start getting better there's hope for all of us.

When do you plan on getting tested for xmrv?

 

[starryeyes]

Thanks for sharing your experience ladybug. Wishing you all the best.

 

[Knackered]

thanks tee. i wish you the best also.

knackered....i tested negative for XMRV by PCR and culture but they are doing the antibody test on my blood now. it is being done in a research setting so it looks like it will take a long time.

today is especially horrible for me and i am feeling very discouraged. hope tomorrow is different.

i rested yesterday and am in bed again today.

love
sue

Hi Sue, I know you seem really desperate, and I REALLY hope AZT works for you, if it's shown to work for people I'm sure many others would consider it too. But even if it isn't so effective, from what I've learned by talking to people in the chat room/forum and reading articles on the internet I'm sure a treatment will be fast tracked for us all. So even if AZT doesn't work we've got something to look forward to shortly.

I know how you feel, we're all sick of feeling like crap, just a short wait and we'll all start getting better again.

Big hugs, Knackered.

 

[jackie]

Hi Sue...Please hang in there! These things can take time...but as long as your labs remain ok...give it time!

When they tried acyclovir 20 yrs ago they stopped after 30 days! I stuck it out and I'm seeing definite improvement. I continued on (nearly 4 years now)...because of small differences that began to finally snowball (and I would have missed those if I'd given up in a month!)

Just as our me/cfs symptoms can wax and wane, I think that the RESULTS we experience (from some of these meds), can also do that.....for a time. So don't give up!

Good luck! jackie

 

[Knackered]

if XMRV is the cause of CFS, shouldnt azt always work?

You'd be best asking Gerwyn.

 

[Cort]

Not necessarily. AZT was shown to be helpful in stopping the virus from replicating in a lab study but the body is a far different environment. Researchers can easily stop cancer in test tubes for example but doing the same thing in the body is much more difficult.

Of course AZT has a track record with retroviruses - so they think it could work - but they don't really know.

XMRV may not be doing its damage by replicating; as Dr Mikovits noted - it doesn't appear to replicate much; whatever it does it appears to do simply by sitting in the cell. I don't know if AZT hits viruses when they're not replicating.

 

[cfs since 1998]

Sorry to hear about the nausea ladybugmandy. Are you taking anything else? Are you still on Valtrex?

if XMRV is the cause of CFS, shouldnt azt always work?

Not necessarily. AZT was shown to be helpful in stopping the virus from replicating in a lab study but the body is a far different environment. Researchers can easily stop cancer in test tubes for example but doing the same thing in the body is much more difficult.

Of course AZT has a track record with retroviruses - so they think it could work - but they don't really know.

You are right that just because something works in vitro does not necessarily mean something will work in vivo, this is usually because many things aren't absorbed into the blood stream very well. We know from HIV research that AZT is absorbed and can inhibit HIV in the body. Since AZT inhibits XMRV in vitro at a similar concentration that it inhibits HIV, I think it is pretty good evidence that it will work in vivo, short of a real clinical trial. If it was some new drug that had never been studied in vivo then much more skepticism about that drug's efficacy would be in order. When a new drug is discovered to do something in a test tube, they first do a Phase 1 trial on healthy volunteers. The Phase 1 trial is done to determine safety and to assess how the drug is processed and absorbed into the body (pharmacokinetics and pharmacodynamics). Of course we already know about AZT's pharmacokinetics etc.

What are some reasons AZT might NOT work? My guesses are
1. XMRV doesn't cause CFS
2. Drug resistance
3. Coinfections have overwhelmed the immune system. If this were the case, I would think AZT would still work, but take a longer period of time, a year or more possibly.
4. XMRV or a coinfection is being harbored in a body tissue where AZT can't reach

XMRV may not be doing its damage by replicating; as Dr Mikovits noted - it doesn't appear to replicate much; whatever it does it appears to do simply by sitting in the cell. I don't know if AZT hits viruses when they're not replicating.

I am not convinced this is the case, but if it is, immune modulators would probably help. Anything from ampligen, isoprinosine, beta glucan/AHCC, even echinacea could help. We would need to get the immune system to kill the infected cells.

Personally I think Isentress (raltegravir) is the drug to keep a close eye on. From the a combination of HIV in vivo and XMRV in vitro I wouldn't be surprised if raltegravir and low dose AZT became the standard of care for CFS, at least in the short term until pharma "invents" some new drugs specifically for XMRV/CFS. I am actually finally about to start Valtrex in a few weeks and I am really itching to get my hands on some raltegravir and AZT, although I will probably wait until we have more solid evidence.

 

[Kati]

What are some reasons AZT might NOT work? My guesses are
1. XMRV doesn't cause CFS
2. Drug resistance
3. Coinfections have overwhelmed the immune system. If this were the case, I would think AZT would still work, but take a longer period of time, a year or more possibly.
4. XMRV or a coinfection is being harbored in a body tissue where AZT can't reach

I am not convinced this is the case, but if it is, immune modulators would probably help. Anything from ampligen, isoprinosine, beta glucan/AHCC, even echinacea could help. We would need to get the immune system to kill the infected cells.

CFS since 1998, of course you are guessing, but I would like to bring a bit more clarity:

1.One has to be patient in regards to drug effects. Some drugs take longer to work and some not.
2. Dosage: is 300 mg a small dose? Is it the most effective dosage for XMRV
3. Is it the right drug? We are making very premature assumptions at this time of the game!
4. Is the absorption maximal especially knowing the gut issues that CFS patients can have
5. Just like HIV do we need a combination of drugs in order to control XMRV?

We are very early research wise for XMRV. Drug companies and scientists are working hard to come up with a drug regimen that is efficient and safe for the patients. Clinical trials will provide answers in due time, but these have to be done in a controlled situation.

We are still at the point of finding out if XMRV is the cause. like you mentioned CFS since.. Once many more retrovirologists will be convinced and familiar with CFS, the ball will get rolling a bit faster.

As hard as it is to wait, unfortunately, we have to.

 

[Knackered]

of the 3 people who improved on azt, 2 had had CFS >18 yrs and noticed improvement in 2 weeks.

Improved to what extent? Had they tested possitive for XMRV?

 

[heapsreal]

ask your doc about maxolon or even phenergan for the nausea, try to make this treatment as comfortable as u can girl, keeping a keen eye on your posts, waiting for that paost on how you recovered.
cheers!!!!!!!!

 

[Hope123]

Sue, try some peppermint or ginger tea for the nausea before pharmaceuticals. These have no/ less side effects. I don't have nausea with my CFS but did have it before due to other reasons and good quality ginger tea helped me.

http://www.webmd.com/cancer/news/20090514/ginger-may-root-out-nausea

The good side to AZT is that it is an old drug, which means that trials can roll out faster than a less tested drug and we have a better idea of its side effects short and long-term compared to a new drug. Aside from higher doses, the toxicity of AZT on mitochondria is also dependent on duration of treatment. IIRC, 2 years was when they began to see mito toxicity though you should check this out with your doc, Sue.

Some docs who are very wise tend to use older drugs first because of their known track history although to others it might seem like they are behind the times.

 

[citybug]

Weren't some people taking valcyte taking some common antacid first? I can't remember details.

 

[MEKoan]

Ladybugmandy,

Do you feel up to making a list of your most severe symptoms so that it will be easy to see which of them improve over the course of your treatment? I think everyone's "About Me" got erased in the upgrade.

Thanks Mandy. Wishing you the best!

 

[jackie]

Mandy...Tagamet (or Zantac for lesser side effects/effectiveness) does increase blood levels of LOTS of drugs (a MUST to check out drugs interacting with Tagamet!) ...but may also help to decrease overactive t-cell activity (which may be activated in herpes/ebv viruses). Don't know if it would actually help your nausea. (I take regular old compazine when absolutely necessary...but I try to get by drinking the really strong imported "Ginger Ale"...the kind that you have to back away from when you pop off the cap!)

If you haven't already - check out the Thread for those taking Tagamet (for me/cfs)...some very good results (some not so good). And links to the studies.

btw, after looking at your symptom list...do you know what viruses have been checked? (other than xmrv, can't remember if you've already said...sorry!) Also, look at the symptom lists on the new Enteroviruses thread.

Of course (as the saying goes) "to a hammer - everything looks like a nail!" (or something like that!?:Retro redface....but your list is also MY list....it's just the night sweats that are now diminishing.

take care....jackie:Retro smile:

 

[starryeyes]

sure, koan

brain fog
swelling feeling in head and neck
neck pain
aching lymph nodes
fatigue
irritable bowel
some twitching
labored breathing
general malaise
low grade fevers
night sweats

I like this list actually, because I think it's concise compared to other lists and I feel that if someone doesn't have all of the symptoms ladybug mentioned they don't have ME/CFS as I know it.

 

[jackie]

I like this list as well, Teej! Some of the symptoms are very weird such as the sensation of head/neck swelling (it may be!...for me it's a strangulated/constricted feeling)...or general inflammation/edema?

And here's the REALLY strange thing for me...for years I assumed that I was running a low grade fever all the time - based on how I FELT (so hot! In fact, my husband would tell me that I had heat radiating off of the top of my head and everywhere else! But NO "normal" sweating - and if I place my hand on a pillow it heats up in a matter of seconds..and of course, that awful feverish feeling that we get, where your eyeballs feel on fire!) Suppose this may be part of the Autonomic Nervous system malfunctioning?

I gave up checking my actual temp with a thermometer several years ago...and it turns out my temp IS (and probably WAS, much of the time)...SUB-normal - about 96...although during viral re-activations I do get those low-grade (101+) and sometimes true "fevers". My "nightsweats" were pretty rare, but did occur...and now, not so much!
j:Retro smile:

 

[MEKoan]

Thanks much Ladybugmandy! Maybe you could track any improvement as a measure of each of these symptoms - and any others, of course.

Where are you now on the Bell Scale? Or, maybe, where were you 3 days ago would be a better question. Perhaps you can track any changes in that, too.

Thanks for keeping us in the loop! Fingers crossed for you but can't say I'm not more than a bit concerned :worried:

Jackie, I used to assume I had a low grade fever, too, and sometimes did in the early years, but it was as likely to be below normal as it was to be above when I felt "feverish". Now the only thermometer I have in the house is the one I use for the dog - and you know where that goes - so I don't take my temp any more. :tongue: Also, hardly ever sweat at all. Odd thing, this, very odd thing.

 

[starryeyes]

lol Koan!

Jackie, I've heard that our internal thermostat is broken. I think that's related to the Autonomic System.

I am now thinking that those symptoms describe my subset within CFS. We were just discussing this in Chat, and some PWC there who are XMRV + never had swollen glands. They also didn't have EBV like I did but they had shingles and Chicken Pox as adults. This fits with XMRV being the puppetmaster over whatever we've got.

 

[MEKoan]

Hey Teejkay,

Thermostatic instability is a big issue for me. If I am fatigued, I can't get warm even in a warm room under a blanket. If I get overheated in the shower or the summer, I must take pretty extreme measure to cool myself down because I don't really sweat.

Strange stuff!