My AZT + RAL Trial

[MaryAnn]

Thank you for keeping us posted and our prayers are with you. It would be amazing. if now you have turned the corner and just continue to health.

 

[shannah]

Yes Sue they do NK Cell Counts in Ontario (although my GP told me it's not usual). My son has had it done to monitor results while on Immunovir.

 

[V99]

I must have missed this thread.

Wow. I would say you have got a lot of guts to do this, but what real choices do you have. Still got alot of courage though.

I really do hope this works.:Retro smile:

 

[Hope123]

You can ask for CD4/ CD8/ CD3 and also include any other immune/ inflammation labs you have had in the past that have been abnormal. Of course, I realize you are limited by whether your doc will order them, lab availability, and cost. Even if your counts have been low normal, if there are big changes with the AZT, that says something. Cytokine testing, esp. IL-4/Il-5/IL-6/IL-8/LT-alpha is tricky but if you are able to get that, it would be cool. (BTW, for everyone reading, the past stats were about 15% of CFS sufferers have below normal CD4 counts.)

For example, I have all the above CD counts below normal, elevated IgE, moderately elevated ESR, in addition to low normal NK cell activity/ count and my doc helps me monitors them.

 

[cfs since 1998]

after i left the doctors office and gave 5 vials of blood, i went to a mall and browsed around for a couple of hours!

Wow, I can't imagine browsing at the mall "for a couple of hours" let alone after having 5 vials of blood drawn! I can barely prevent myself from passing out after losing that much blood.

on another note, i had emailed a virologist to ask a few questions. here are the answers:

Quite interesting. Thanks.

 

[knackers323]

hi Sue, ever since I got sick I have had this hot feeling that I think you are describing. the worse I am and the more I have to push myself the worse heat gets. glad to hear your doing well

 

[garcia]

Yes Sue they do NK Cell Counts in Ontario (although my GP told me it's not usual). My son has had it done to monitor results while on Immunovir.

Shannah that is interesting. Do you know what happened to his NK Cell count when he started taking Imunovir?

 

[garcia]

Thanks a lot for the update Sue, we are all watching closely. Great that you browsed a mall! I think there should be a new test for ME/CFS called "the mall test". Subject is let loose in a mall for a couple of hours. If they browse/shop then they are doing well. If they collapse into a heap due to over-stimulation then not so well.

 

[natasa778]

Interesting as nightsweats are very common in autism - and you described sitting down rocking in despair and feelings of something creeping about in your head? (gosh how horrible hope that goes away and you tell us about it in the past tense!! all fingers crossed). I am also interested in what you describe as "heat" - do you mean to say you get hot/hyperventilate easily, more than healthy people?

so glad to hear you are feeling improvements!!! may I ask what other things you have tried in the past and if anything brought any benefits before?

 

[omerbasket]

Sue,
Your case is absolutely fascianting!
It would be HUGE, not just for you but for many many others, if you would continue getting better (or even if the current improvments will remain - although we definitley all hope that you'll just keep getting better and better).
I would not be surprised if there would be some ups and downs in your situation in the future (close one too), so I think we should be ready for this and not get depressed when the downs come (Especially you, Sue, but your case is improtant for all of us personnally, not just because we want you to be healthy but also because we would like ourselves to be healthy).

 

[oerganix]

lol@ mall test

did you guys read dr. goff speculating that the virus doesnt really appear to be replicating in blood cells? i wonder if its just replicating in brain and other organ tissue. clearly is must be replicating if AZT is helping me. i am very sure i am not imagining the improvements!

One of the researchers using monkeys reported, at the Infectious Diseases conference, that they were finding XMRV in the lymphoid and reproductive tissues, after infecting the monkeys.

Re: the HEAT. I get that, too, but no longer get night sweats. Just sort of a "hot flash" but not so hot as to really be called a flash, more of a surge or flush I don't turn red or feel hot to the touch by others. I think it's part of the hormone imbalance.

Thanks for sharing this trip with us. Best wishes to you.

 

[alice1]

Shopping in a mall is a great sign..lol.
We all love to hear how well you're doing.
xo

 

[Cloud]

why isnt anyone reading this thread? isnt it big news that i am recovering on azt?!?

lol

Oh I'm watching, hoping and cheering for you! I too understand taking extreme chances and believe it takes a long stay in the abyss of severe illness to understand such actions. I did that with Vistide. I have my own issues with trying the poke and hope method with an anti retro viral at this point in time, but I fully understand your reasons and appreciate you sharing your progress with us. I would suggest frequent Comprehensive Metabolic Panel labwork. I'm excited about your progress......Onward!!

 

[shannah]

Shannah that is interesting. Do you know what happened to his NK Cell count when he started taking Imunovir?

Hi Garcia,

His NK Cell Count did go up while on Immunovir. From the records here, I see it went from:

Prior To Starting Immunovir: 0.1 LO - Percentage 4.3% Reference Range 0.14 - 0.54 x10E9/L (Canadian Testing)
After 2 Months Of Starting Immunovir: 0.16 Percentage 6.0%
After 17 Months: 0.18 Percentage 7.0%
After Being Off for 18 months or so: 0.09 LO

I think he was on it close to 2 years starting in 2004 and he didn't seem to be quite as exhausted as he normally is. The doctor didn't feel the gains were significant enough to keep him on and wanted to try other things. In hindsight though, it obviously was doing something - more so than the other therapies that didn't pan out.

shannah

 

[alphahusky]

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.

I agree, for the most part with the symptom list (I know, I'm 2 weeks late in replying to this). But while I had a low grade fever for the first 6 years (99.9), after I went vegan (I didn't stay vegan, but was for a while and then vegetarian- during pregnancy and when breastfeeding I do eat meat, though, or I wouldn't get enough food) it dropped back to my "normal" from before ME/CFS, about 96.8 on average (though I've been in the 95s). I am severely hypothyroid, though, and I know that has something to do with sub-normal temps.

 

[kurt]

lol@ mall test
did you guys read dr. goff speculating that the virus doesnt really appear to be replicating in blood cells? i wonder if its just replicating in brain and other organ tissue. clearly is must be replicating if AZT is helping me. i am very sure i am not imagining the improvements!

With HIV patients monitor viral counts over time and so can correlate improvements with lowering viral load. And I believe they monitor several levels, not just HIV load. Is your doctor monitoring viral or immune parameters?

Clearly the AZT is doing something, and given the low replication rate of XMRV, your rapid response is very surprising.

 

[Rrrr]

ladybug,

how do you feel today?????? please tell us daily -- or as often as you feel comfortable -- how you are doing. we are hanging on your every word.

also, can you tell us more about the CFS symptoms that you feel have lessened? how, in what way, do you feel better than usual today, for example?

and is the nausea now completely gone?

and one more question: would you say that you are one of those CFS folks who is usually highly sensitive to most meds? folks like me can't take most meds. (we have to start at a sprinkle dose, literally.)

warmly
rrrr

 

[Rrrr]

ladybug,

also, i just joined patientslikeme.com to read witchywoman's posts (you wrote earlier that she also is using AZT for CFS and having great results), but i only see one post from her. am i wrong?

however, i do see the charts she is keeping on which she tracks her progress, and they are STUNNING.

this website has charts on which patients track their progress, and looking at witchywoman's progress is nothing short of a miracle. 2 wks into her antiretroviral medication treatment of AZT (300 mg daily), almost all her cfs symptoms begin to drop dramatically. a few months into the treatment and, by and large, her symptoms just stop.

it is very worth signing up for this website just to see the charts she is keeping: (http://www.patientslikeme.com/patients/view/70657)

rrrr

 

[Forebearance]

I'm so happy for you, Sue! Fingers crossed for more improvements.

LOL about the mall test, Garcia! Most malls have lots of mold toxin in them, so if I could be in one for several hours without collapsing, that would indeed be a triumph.

Wow, alphahusky, you beat me. I only had a low grade fever for the first three years of my CFS. My hot flashes have gone away since I've tinkered with hormones and avoided mold.

Forebearance

 

[Rrrr]

hi all,

thanks, sue, for your update today!! we sure hope yr improvement continues!!!!! tho i imagine a few days of plateau are to be expected. i wonder if another drug to consider trying at the same time as AZT might be LDN (low dose naltrexone), as i know a few CFS folks who are experiencing great success with that, and i also heard it is being used for HIV/AIDS.

THANK YOU SO MUCH FOR KEEPING US UPDATED.

warmly,
rrrr