Antiretroviral Trial

[Daffodil]

a couple of researchers have told me that they think i should be OK on just the 2 drugs.....but i dont feel OK. i feel like it isnt even touching my brain at all. maybe this disease needs a HUGE amount of the drugs to get into the brain - especially for pepole with a MEGA swollen brain!!!

no one should even be reading my thread since they cannot even find the damn virus in my blood yet!!!!

i cant believe 10's of thousands of people are probably reading this, including doctors. thats just wild.

 

[redo]

The health system is totally absurd. You know, even if I were seriously considering a euthenasia (which I have), even then patients should not be allowed to get "salvage theraphy", because "it might be harmful"... I mean, who cares. They pratically never say "given the situation", it's right to do an attempt...

It's not like we have the best of options just waiting for us. And many ducks seem to think it's perfectly fine to do nothing.

Speaking of treatment. Do you know of the list mikovits put together with nsaid, some natual supplements etc?? I can't find it. (I know it's not a miracle cure, but it is something)

 

[Daffodil]

you are right. its madness.

i remember the list but don't have it. i am just sick to death of ordering expensive supplements and then throwing them out. its all i do!

 

[redo]

If anyone else knows of the list, then please post. I gotta find something, even if it's small.. Best of luck with the road ahead daffodil. I know it's not easy, believe you me.

 

[redo]

(Just in case you haven't seen it)

Here's snyderman's cytokine/chemokine profile:
http://i51.tinypic.com/30ixk3t.png

Source, last page here.

 

[Daffodil]

thanks a lot redo. i hadnt looked at that closely before. it looks like the inflammatory markers dropped at the 6 month mark? am i reading that right?

sue
xxoox

 

[Daffodil]

just got word that in thailand, azt 200 mg BID is an approved dose for HIV...so perhaps I can try that.

raltegravir was recently shown to penetrate CNS

 

[redo]

Seems to me that he started treatment on the 24th of January, and the cytokines begun falling at (around) the end of May. So, I'd say it took around four months until they begun falling with him, and it kept on falling for some time...

 

[Daffodil]

ok thanks redo. thats what i originally thought. what the hell is going on with me.

now i am thinking i am scared of AZT. i was reading that even on very low doses, there have been cases of cardiac tissue damage and even death.

whats worse? this disease or a chitty heart? fk.

 

[redo]

If you want my layman's 2 cents, I don't think you have developed heart issues as a side effect of treatment, but that it's rather a inflammatory reaction. You can try to Google the names of the cytokines you have abnormal levels of. Google the name and heart and see if you come up with something...

I don't say that it IS that way, but I am saying I think it's that way...

 

[Michael Dessin]

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.

Whoa Daffodil...please dont think that way, I know the suffering is relentless but keep the image in your mind of all the things your going to do when you get better!! Any images that will motivate you to keep trying and pushing forward.

One note, if your not on anti-inflammatory supplements/meds please get on them as it will relieve inflamation throughout the spinal cord and brain. Try to stay away from steroids as they weaken the immune system and try a supplement that you can tolerate

Mike

 

[Daffodil]

ill have congnitive impairment always even if i am put on the right meds. its going to be just like with HIV. i will never have my brain back

 

[Michael Dessin]

Daffodil
Why do you believe that!....Thats simply not true with ME/CFS or HIV.

The patients who respond to treatment with HIV, even end stage AIDS to be more exact get full function of their brains back even after they are in full blown dementia.

The same is true with ME/CFS, nearly all of the cognitive function can correct itself once the cause issues are corrected...so its not permanent!!

Im not just talking brain fog correcting but way beyond...all of the obscure neurological issues we have can be corrected, the hardest issue is finding the right treatment for these corrections to take place.


One note...ME/CFS is very different than HIV/AIDS so comparisons are not logical.

 

[heapsreal]

daffodil from reading your post you seem far from having cognitive impairment as your spelling and your general written skills are easy to understand and u grasp difficult to understand knowledge on a broad range of subject matters on cfs. I do believe u have them but the way u write on here i believe any cognitive problem at this stage would be reversable.

cheers!!!

 

[Daffodil]

I'M POSITIVE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! i just got my VIP results.

18 YEARS OF SEARCHING - OVER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAH all those relatives telling me im depressed..imagining things..lazy..dont want to work...faking....need to get married..need to have a kid....need a shrink......

VINDICATED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

[ukxmrv]

Congratulations Daff!

Welcome to the club for people who don't want to be in it - but the alternative is even worse.

 

[leaves]

Congrats! Great you know!

 

[maryb]

Congrats - but you so knew didn't you:victory: I just pray you can get sorted now.

 

[TheMoonIsBlue]

I'M POSITIVE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! i just got my VIP results.

18 YEARS OF SEARCHING - OVER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAH all those relatives telling me im depressed..imagining things..lazy..dont want to work...faking....need to get married..need to have a kid....need a shrink......

VINDICATED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

That is so wonderful, Sue! Congratulations! Screw all the non-believers you've had to deal with over the years. This is great news about your positive results as you may be become eligible for clinical trials, or other new treatments, once they are offered to the XMRV+

P.S. Did you have the new Serology test that is supposed to detect not just XMRV but other Human Gamma Retroviruses/MLV's? I think this could be good news for a lot of people who maybe haven't been able to get a positive for XMRV in the past, there could be so many different variations and hard to detect.........your VERY long wait has indeed resulted in VINDICATION and finally a real answer. You've perservered for so long and it has paid off!

 

[Daffodil]

thanks so much, guys. it does feel weird being so happy about having a retrovirus and i still dont know if i will ever be well...but i am just so glad to fnally have something in black and white. my mother is very unhappy about the results but she does not know how the illness feels!

this is the result of the new serology test. in the past, i was negative with the old serology, as well as by PCR and culture.

it is my understanding that the new serology casts a "wider net"...so i could have XMRV and/or the other related ones. but they are still calling it "XMRV Serum Antibody Detection"....shouldn't they call it "HGRV" or something?