Antiretroviral Trial

[aquariusgirl]

didn't cansado do ampligen at one point....? important to know ppl's txt histories to understand how they are reacting to current txt protocols...

 

[Daffodil]

so i communicated with an ID doc, who said its unlikely its a co-infection in my brain cuz why would only the brain be affected? i feel good from the neck down.

what do i do now? why is my brain still so foggy and swollen? the back of my neck..there is a churning pain....like a ball...right at the base of my neck, where it meets my spine. something is in there.

my brain is still being damaged despite the meds. what will i do now. what if it is really the retrovirus that has somehow infested my brain and mutated and its like in HIV people who have CNS infections that cant be controlled? oh noo no no

 

[Daffodil]

hi all. i stopped AZT about 4 or 5 days ago. i woke up today with worse neck pain, spine pain, brain swelling. I feel feverish and i am sweating profusely. i also feel my malaise returning.

what do i make of this? if its xmrv deep in my brain, the AZT and the other drugs should have helped my brain a lot more than they did. if it is a co-infection with a herpes virus, why did stopping azt make me worse? azt has no affects on herpes viruses. if its a herpes virus that is making me THIS sick, why can they never find it in my blood? why are my antibodies not very high?

the AZT was helping my energy levels greatly. i do not think the other drugs are doing anything. the only thing i can conclude is, that i have a retrovirus that has not been identified.

i will still try to get a spinal tap....but i am sure all they will find is increased pressure and evidence of a mystery infection. i really think now that i will end up dead - and not in a quick, painless way either.

 

[ukxmrv]

Sending a hug to you (((Daffodil)))

I also get some neck pain and especially when I am feeling "virusy" but not the swollen brain.

Don't understand what the AZT is doing to make you feel different things on and off it. Co-infections does sound likely and is it one that we don't know about yet?

Too many unanswered questions and I'm sorry, Daffodil that you are stuck with this horrible disease.

 

[Daffodil]

{{{{uk}}} thank you for your compassion.

i wish i could stop worrying. what is going to happen is going to happen. no amount of anxiety will make a difference in anything...but it is so hard.

 

[Daffodil]

i am so depressed i just ate 4 pieces of cake. now i'm nauseaus

fk

 

[ukxmrv]

Charcoal tabs help me with excess cake

Hope it was a nice cake though!

 

[Daffodil]

charcoal tablets???

the wpi clinic is open but i wish they had a neurologist..its a neuro disease! i hope they get one.

i sent my papers off to peterson. someone told me not to get a spinal tap cuz the trauma wont be good for the illness...but the swelling and pain seems to be spreading down my spine. if i have a herpes infection that can be treated, i want to know.

anyway, it will be like 1/2 year before anyone helps me and i will be dead or insane by then!!! arghhhhhhhhhhh

 

[undcvr]

Activated charcoal tablets work like clay, for a small amt they have a huge surface area. Supposedly they form a negative charge in water in our gut and attract and bind toxins to it so that it can be removed. This can be anything from bacteria, viruses to most metabolic by-products in the body like ammonia which has a strong positive charge. I take clay every once in a while and do feel that it helps.

 

[Daffodil]

wow. neat. i have heard of that for people who overdose and stuff...didnt know you could buy tablets.

are you still doing well on the valcyte? i hope i have the right person..my memory....

despite the mess in my head, my energy today wasn't as bad as it thought it would be. i am sicker and need naps, there is no question, but i still had some energy today and did a fair bit of cleaning.

i spoke to someone and apparently, there isnt anyone else that they have data on, that had this weird cytokine shift after taking the ARV's. no one has an idea about what it means. i have had doctors suggest neuroendocrine problems, glutathione/methylation problems, co-infections, etc.

how wonderful it would be, if this head situation wasnt directly related to the retrovirus....if it was another infection or something more treatable.

i have heard from actual patients on the ARV's who say their seizures have all but stopped and their spine pain is gone....so maybe it could be something else in me....

i have a head and neck MRI scheduled for august but i will keep trying to get in sooner.

 

[Daffodil]

wow. how strange. are you going to do some chelation treatment?

i wonder if there is any data of mercury levels in HIV patients..i cannot find anything. have you eaten a lot of sushi or certain types of fish lately?

i would defintely ask a doctor about that! since you feel OK, maybe it isnt that serious and can be reversed easily. I am sure there is a connection with the infections we suffer from our ability to deal with metals.

i may have a lead on a spinal tap...nowhere close by though, but still, a lead.

i asked at the hhv 6 foundation and was told that taking antiretrovirals is considered so outside the mainstream right know, no neurologists they know of would be willing to help me.

even if a doctor doesnt believe in the retrovirus theory, surely he/she wouldnt demand i stop the drugs if they are helping me!? ugh.

and what if i get a spinal tap and they use the wrong lab and the tests dont reveal anything? someone told me no lab found his CMV until the sample was sent to wisconsin viral research.

WHATS IN MY HEAD!!!~!!!!?

 

[*GG*]

the wpi clinic is open but i wish they had a neurologist..its a neuro disease! i hope they get one.

Perhaps they will get a Neurologist eventually. I saw 1 for a couple of years and he was rather useless, good at prescribing meds (which did nothing, except the painkillers), so I don't see this as a big deal.

GG

 

[Daffodil]

yea but they need one if they want to do spinal taps, dont they?

 

[Daffodil]

hi all. i saw my infectious disease doctor yesterday. i argued with him for a long time but he refused to put me on cidofovir, regardless of any spinal tap evidence i bring him.

he says that if i strengthen my immune system, it should take care of the hhv6 itself, which i don't think is true...many times infections have to be treated directly.

the cidofovir patent expired in 2010 i think, but there is no generic yet....and cmx001 wont be out for a long time i am sure. i called chimerix. they have stopped providing the drug on a compassionate basis because they have expnaded their trials.

obviously, i cannot afford getting the drug in the states, so its back to square one.

 

[undcvr]

Your doc is an idiot, did you show him the Montoya/Lerner studies ? For those of us with CFS we just cannot clear it by ourselves. Montoya even suggest chromosomally integrated HHV6 that is rampant in the cell but wont show up on commercial blood tests.

Sorry to hear that Daff, maybe u can go to the doc Cloud saw ?

 

[heapsreal]

hi all. i saw my infectious disease doctor yesterday. i argued with him for a long time but he refused to put me on cidofovir, regardless of any spinal tap evidence i bring him.

he says that if i strengthen my immune system, it should take care of the hhv6 itself, which i don't think is true...many times infections have to be treated directly.

the cidofovir patent expired in 2010 i think, but there is no generic yet....and cmx001 wont be out for a long time i am sure. i called chimerix. they have stopped providing the drug on a compassionate basis because they have expnaded their trials.

obviously, i cannot afford getting the drug in the states, so its back to square one.

Hi Daff,
Is cmx001 the oral version of cidofovir that Dan Peterson is using. Maybe they might make a generic in India soon???

cheers!!!

 

[Daffodil]

it makes no sense that my doc would say that. even after HAART, they have to directly treat CMV and JC virus in patients....the immune system doesnt take care of it.

hi heap....peterson isnt using cmx001 i dont think....its not available yet....the cidofovir patent expired in 2010...i think gilead made some deal with india cuz there are no generics.

cloud saw peterson

i was up all night last night cuz the burning and pain in the back of my neck was so bad. usually i am able to sleep so this was odd. i'm really scared.

 

[5150]

hi sue,

please try for the mri early as possible.

another thought: do you have any chiropractic needs in your spine? i've found that what happens in the spine can help the neck, too. vertabrae alignment seems so simple a thought here, but who knows? covering bases...

anti inflammation protocol too. that seems to be a hard one to get right. <--suggestions anyone?

 

[5150]

p s

our immune systems take care of very little, in my experience. lucky to keep infection out of a scratch. your doc does't "get it" about your disease.

 

[undcvr]

I don't get it, if cloud saw peterson and if peterson gave him/her vistide, what is the rationale for not prescribing it for you ?? You both have exactly the same diagnosis.