Antiretroviral Trial

[taniaaust1]

thanks guys. sorry..was having another episode :-/ i have them less now. its been so long, the disease is mostly a part of me now.

people who spent years as a prisoner of war...or in a concentration camp...how do they come to terms with what happened? cuz thats what this has been like for me. its that bad.

I hope you have a psychologist or get some kind of counselling around your thoughts around this illness, the self blame etc. (with my brain I cant remember if you have one or not).

We seem to be predisposed to this illness in some way (genetic?), its really not due to something we've done. Maybe you wouldnt have got sick so early had you not done what triggered it off, but you probably would of still got sick anyway. It would of happened some time and isnt something you probably could of ever avoided.

Be kind to yourself. Keep working on thinking postive and getting rid of false negative thoughts.

 

[Daffodil]

thanks tania. its next to impossible to find free therapy here, i have been trying for years. i finally found someone adequate but i am too sick to travel that far now. besides, at this point, i would need a therapist who specializes in brain injury or something. ha! good luck with that if you're in toronto and have CFS.

yesterday i had a long day where i had to run several errands. i slept very deeply but today, from the neck down, i dont feel too bad. however, from the neck up, it is MURDER.

my whole brain is so swollen i feel like killing myself. and no matter what anyone tells me, i know that the XMRV (or whatever virus it is), has decided to live deep in my brain tissue. i know it!

what the heck am i supposed to do?? i cant take 1200 mg of azt. i wont be able to find anyone who will inject it into my spine..no one even believes in this damn virus yet! and i dont have enough money to travel all over the place and see various fringe doctors. and CMX150 wont be available for several years yet....ill be lucky to have a brain left.

this is just like HIV dementia. i have been reading about it. the people are well otherwise, but the brain has the virus. this is exactly what i have.

I'M TOTALLY SCREWED!!!!

 

[Daffodil]

sorry if i sound completely self absorbed..i just cant think past my own suffering this is so bad

 

[glenp]

minocycline

I am not sure if I mentioned it to you or not Sue, but have you tried minocycline? My worst symptoms are in the head - head pain, migraines, cognition and sleep. I took 6 months of minocycline, ending the end of december and it helped my head quite a bit. During that time I rarely had to take the vaso restrictors.

glen

 

[ukxmrv]

Daffodil,
Sorry to hear how much pain you are in. Funnily enough here I am in London and no good or free therapy to be had as well. It's funny how few therapists can cope with or offer real support/advice to long term chronically disabled patients. We know more than they do usually.

You don't sound as if you really need them though. More like friends to offload on and people to support you and listen. Feel free to do that here. The swollen brain sounds awful.

Most of all you need proper medical care and help. For ME and XMRV we just don't get that. The suffering, uncertainty we go through is hard to tolerate all the time, let alone most of the time. We need a cure and we need treatment.

 

[Daffodil]

thanks guys, for reading/listening. i know i am not alone.

glen....i am glad minocycline helped you. i thought about trying it after reading about it in HIV. not sure if you read the recent study that showed it didnt help, but i dont know how much i believe studies anymore...

http://www.natap.org/2011/CROI/croi_110.htm

 

[Daffodil]

hi all.

T and B cell gene rearrangement results were negative.

energy is still much better. yesterday i made french onion soup from scratch, did dishes, and wanted to go out (but i didnt). so things are very different in that respect....BUT.....you know what i'm going to say.....the brain swelling is still in full swing!!!

i was always afraid this would happen. after reading all the stuff about valcyte, ampligen, etc etc, every single person and every single doctor said that the brain is supposed to clear first if the treatment is working. this is so agonizing, because the brain fog is the only thing i care about really. it has plagued me and destroyed my life for 19 yrs.

dr. mokovits said something about some small mutation in XMRV causing the cell tropism to be endothelial(?)cells in the brain...so maybe i have that strain??

i have contacted every doctor i can think of and no one has any suggestions..just that i might have another infection. dr. mikovits hasn't answered my emails.

i dont even the think the blood cytokin profile means anything cuz maybe its all different in the brain.

it feels very weird to want to go out from the neck down, but feel like going to bed and crying from the neck up!

 

[lansbergen]

BUT.....you know what i'm going to say.....the brain swelling is still in full swing!!!

it feels very weird to want to go out from the neck down, but feel like going to bed and crying from the neck up!

Maybe lowering inflammation of the cranial nerves could help with the brain problem.

You might try creme with benzydamine on your neck and face.

 

[heapsreal]

Maybe trying to increase cerebral blood flow with gingko or other vasodilating drugs could help with brain fog or even increasing the availablitiy of the retro drugs to the cns. Also other things to help build neural network like phosphatidylserine and other phoso lipids etc, Also a low dose of a benzo to calm your nervous system down as i think cheney has mentioned this and found it can increase energy in cfs patients.

cheers!!!

 

[undcvr]

Daff, I was wondering what yoir thots are on using an immunosuppressant to counteract our overstimulation of the immune system in CFS ? I have been thinking about this alot actually and the last time at was at my doctor's we both actually came to the same conclusion separately while talking about it.

I have always believed that CFS is a CNS overstimulation problem that is why I am not trying to avoid all stimulants and it also explains why sedatives help. But if the immune system is still over responding to even the smallest stimuli, I am wondering if an immunosuppressant drug can help.

There are several ironies to this issue. Immuosuppressants like Rapamune and Rapamycin are also used as life extending drugs in animals, especially pets.
And the other is that Resveratrol the very popular advertised as life-extending herb is also an immunosuppressant.
Rapamycin is being considered as a breast cancer drug.

So maybe the word immunosuppressant isnt the rite choice of words at all.

I feel that if we can calm down our overactive CNS and immune system we can go a long way to mitigating CFS relapses.

 

[Daffodil]

thanks, all. i just think i have an infection...and i dont want to cover it up....so thats why i am not trying other things like anti-inflammatories etc... i am hoping to treat the infection....or something....i dont know....i just dont know

 

[omerbasket]

thanks, all. i just think i have an infection...and i dont want to cover it up....so thats why i am not trying other things like anti-inflammatories etc... i am hoping to treat the infection....or something....i dont know....i just dont know

Are you talking about the XMRV/HMRV infection?
Because if you are - as far as I understand Dr. Mikovits is saying that anti-infflamatories can help because infflamation helps XMRV replicate, and therefore reducing infflamation should, I think, reduce XMRV's replication. I don't know if it would be very effective or not, but it seems that it should reduce the replication rate of XMRV to one degree or another.

 

[Daffodil]

omer ur right i didnt even remember that..its true with HIV too, i think. i will ask my doc if he could recommend something...if he lets me on another med.

thanks
sue

 

[heapsreal]

I dont think normal anti-inflammatories like celebrex or ibuprofen type drugs are going to work against viral type inflammation, cortisone/prednisone possibly would but then it would lower our immunity. I would be interested to know of any anti-inflammatories effective against viral inflammation as well. What type of meds are used for inflammation in HIV??

cheers!!!

 

[undcvr]

I disagree think that most antiinflammatories will work against viral infections even if it is indirectly. This is the conclusion that Dr Peter Hunt came to with Valcyte and EBV i think. I think that it is the same rationale when people take asprin for the flu virus or when it works against viruses as well.

On top of that taking COX 1 n 2 inhibitors regularly isnt a bad idea.

 

[heapsreal]

i have taken some strong anti-inlammatories over the years for lower back problems, i cant say any of them helped my cfs symptoms at all. Even toradol which is very strong had no effect on cfs symptoms.

 

[heapsreal]

i have taken some strong anti-inlammatories over the years for lower back problems, i cant say any of them helped my cfs symptoms at all. Even toradol which is very strong had no effect on cfs symptoms.

I think its going to take drugs that effect inflammatory cytokines to get the sort of inflammation down from a viral cause. Things like immunovir or cycloferron are a possibility through their ability to stimulate interferron. I dont think cox1 and 2 is going to work on cytokines, but not 100% on this.

 

[Sushi]

I think its going to take drugs that effect inflammatory cytokines to get the sort of inflammation down from a viral cause. Things like immunovir or cycloferron are a possibility through their ability to stimulate interferron. I dont think cox1 and 2 is going to work on cytokines, but not 100% on this.

From my and one other patient who are on LDN, we had near normal anti-inflammatory cytokines. My IL 8 was slightly raised (40) but I would have expected much more. LDN is supposed to do that, but it is nice that our tests conformed to the supposition.

Sushi

 

[Daffodil]

energy continues to be good, maybe every other day. still need lots of rest but get bursts of energy. today, i made quiche and now want to clean the kitchen floor. my brain is still all messed up. neck pain, severe fog continues.

 

[Daffodil]

another good energy and bad brain day. heard from a fellow who says his seizures are down 75% on the arv's