Antiretroviral Trial

[Daffodil]

randal.....i am sorry the drugs are so hard to take. i also became sicker on them but stayed on them anyway because the illness without the drugs was intolerable also. i do have some dizziness but the nausea is a little better now. i think its been about 3 1/2 - 4 months for me on the meds. i think my NK cell function is lower than yours.

lately i have felt discouraged and depressed. although i am certainly better than before the meds, and i have had moments where i felt much better, overall, i am still very sick. also, the brain inflammation and fog is still very much there. it is less of course, but not as much as i had hoped for by now.

i am really starting to worry that i will be left with a lot of the cognitive impairments that many HIV patients have, even with treatment. i have heard people say that ampligen gave them their brains back fully, but since that is an IV medication, it probably reaches the CNS much better.

sue

 

[randalbond]

Sue, I won't be able to look thru the whole thread again, but have you tested for EBV, CMV, HHV, etc., plus bacterial infections? What are your resutls? Maybe, XMVR is not a prime target for you now, given the results of your tests? What about Lyme? If you're so ill, it'll be important to test for all of these. But I do know all the problems involved - finding a doctor, who believes in chronic Lyme, him agreeing to test you, the cost of treatment, etc. The thing is I personally know a few people who were or currently are treated for different infections and a few went into complete remission, one after being treated for Chlamydia Pneumoneae (and he posted a famous thread "I am cured" on another forum. I talk to a girl who receives a treatment for chronic Lyme (IV infusions) an she is gradually feeling better and better, I met another person treated for chronic Lyme (previously diagnosed CFS by NHS and left to dry for several years) and now, after being housebound, is going out. So, as you can see it's possible to feel better, even much better without treating XMRV. I do suspect that it may be true in your case as well.)

 

[Daffodil]

hi randal. thank you for the suggestions. i actually have been tested for everything under the sun: mycoplasmas, lyme, all the herpes viruses, etc., all at the best labs. i was on valtrex and valcyte for 3 years and have tried antibiotics too. i have had immunophenotyping done, which strongly suggests viral infection....so i am sure i have xmrv. also, the antiretrovirals are working - i am 100% sure of that - but it is very very slow going. i probably do have some permanent damage after 18 yrs of this and am concerned i will be left with cognitive impairment like so many with HIV and HTLV. but there is improvement from before. i am defintely on the right track with these drugs.
sue
xox

 

[Daffodil]

hi all. just wanted to post an update. i still dont really notice much change from the last post. i have had a dry, hacking cough for several weeks now that refuses to go away. that seems to be making me weaker.

i am at approx. 4 months now. i email some researchers for reassurance, but am usually told that they just do not know whether i can expect more improvement or not. dr. lombardi, however, feels that i will improve and just have to wait because i have been sick so long. he sounds very optimistic. dr. jeckoff-jones speculated that perhaps as the cells harboring XMRV die, we will hopefully improve further.

i have been fighting severe(!) depression and still have pretty bad brain fog so i have not posted much.

love
sue

 

[guest]

hi all. just wanted to post an update. i still dont really notice much change from the last post. i have had a dry, hacking cough for several weeks now that refuses to go away. that seems to be making me weaker.

i am at approx. 4 months now. i email some researchers for reassurance, but am usually told that they just do not know whether i can expect more improvement or not. dr. lombardi, however, feels that i will improve and just have to wait because i have been sick so long. he sounds very optimistic. dr. jeckoff-jones speculated that perhaps as the cells harboring XMRV die, we will hopefully improve further.

i have been fighting severe(!) depression and still have pretty bad brain fog so i have not posted much.

love
sue

Hang in there, Sue! Over these many years the body made adaptions to the infection and these adaptions don't change very fast, especially in the brain. It will take some time to clear out all the infected cells. Keep us updated please.

 

[boomer]

Hi Sue,
You mention you have a dry cough. I have had this problem on and off for many years and my problem is gerd. I don't cough when I am lying down and I don't cough at the beginning of the day. If you find that you cough more on a full stomach or after a meal or that you get sore throats and feel inflammation in the throat or chest area you may have touches of acid reflux too. Staying away from the worst foods and taking nexium have cleared it up for me - at least for the moment. I am just mentioning this because I know a lot of people don't associate ongoing dry coughs with acid reflux. Take care.

 

[ukxmrv]

Sue,

For the severe depression (and only if you can) please keep posting here for support.

There is a large group of people who care about you and wonder how you are getting on.

Yes, there is the occassional bad apple, who jumps in without reading the entire thread, but many more who think of you fondly and hope you are OK.

 

[Rrrr]

Sue, we are sending you loooooooooooooooooooove and oodles upon oodles of support. Have you considered stem cells?

xxxoo
Rrrr

 

[Cort]

Are you trying antidepressants? My stepmother became depressed but after a trial of antidepressants she snapped right out of it -- it was amazing to see. Of course depression is hard on the immune system as well - which you want to keep as strong as possible. If you're not taking antidepressants I suggest giving them a try. People with chronic illnesses have a much higher rate of depression than normal - no surprise there!

 

[jimbob]

Hang in there girl, I know what you're going thru. You're damned if you do and you're damned if you don't. I'm going back on Ral to see if I can at least get those 5 good weeks again. I've just got to get past worrying about drug resistance, auto immunity and whatever else keeps getting thrown out there.

 

[Daffodil]

thanks a lot, guys. your support always makes me feel better. i am on cymbalta but it isn't doing anything..i keep taking it just to avoid withdrawals. i have tried most of the antidepressants out there over the years. paxil helped dramatically but wore off in a year. lamictal helped a little but i developed a skin reaction and had to stop. i may try the drug again at some point. i am going to try to see a therapist even though i will have to pay out-of-pocket cuz its getting so bad, but the traveling might be an issue. also, i am in such a fog, with little short term memory and no insight, i wonder if therapy can even help!

i just have to wonder..if XMRV can infect the neurons and i have a lot of neurons infected by now (most?), how on earth can i ever recover? but then people on ampligen recover brain function.....ugh. i ruminate on these things all day and most of the night. over and over and then sink deeper into depression. and then beat myself up over kissing an obviously sick person and contracting this. i cannot stop these thoughts..i cannot let go of it, i dont know why.

most of this board has heard me harp on this for yrs now....:-/

 

[katieann]

I recently went on a trial of Savella with diastrous results. I may have already mentioned it here, I just don't recall. AT any rate, within a week I was starting to have neurological symptoms I hadn't had for a few years. Scared teh hell out of me. As soon as I stopped the trial, I immediately got better. Just be carefull , and mindfull of how your body is reacting to them.

 

[Daffodil]

ty katieann

boomer..thanks a lot for suggesting acid reflux. i actually used to have that many years ago and this cough sounds like it might be that. the cough does lessen markedly when i lay down. i will defintely ask for nexium on tues when i see my doc. that was a very helpful post..thank you. what a relief it will be to stop coughing. the CFS seemed to be getting a bit better until this damn cough started

sue
xoxo

 

[Daffodil]

so....i am thinking...in 10 yrs we will probably have some sort of HIV cure, at least for some people, right? i mean..they are doing so much now, trying to find one and they are going to try to activate all the latent cells, and then there is the CCR5 gene therapy stuff.... and so it shouldn't be more than 5 - 10 yrs after that, that we will have an XMRV cure...right? that doesnt sound too far fetched, does it?

geez..i hope XMRV doesn't turn out to be the next cash cow for big pharma once HIV is cured...

?


hope you guys dont mind my using this thread for my private ruminations...

 

[Daffodil]

there is still a lot of docs, dr. lombardi included, who think you can never get rid of a retrovirus once its in there...but i just don't buy it. they thought a lot of things were impossible before they came to pass.

 

[ukxmrv]

Your ruminations help me think things through as well!

 

[boomer]

When my acid reflux acts up I can feel pretty sick and slightly feverish. I generally don't feel well- nausea etc. Elevate the head of your bed. Stay away from wine, chocolate, spicy foods etc. Gaviscon is the best. I know this sounds strange but floss teeth regularly to discourage inflammation in the throat (no one ever told me that ) take aloe vera for inflamed esophagus and throat. Good luck. xxoo A

 

[Daffodil]

ty boomer. uk..im glad!

i wish i could just relax for once. i am annoying the researchers too....one recently told me to "please stop" asking questions no one can answer...:-/ ...i need some hardcore horse meds for anxiety!

 

[gu3vara]

I'm sorry things aren't going as good as you'd wish on antiretroviral. Personnaly I believe a lot more in GcMaf and Ampligen than ART right now. Even the discoverer of HIV (Luc Montagnier) now thinks that given the right environment and ingredients and immune system can kick out HIV by itself. So why not XMRV...? That probably involves that cells have to be killed rather than healed of the viral infection because it's corrupted.

I personnaly think I'm well on my way of healing from CFS so I feel really optimistic these days. I'll report on my improvments in the weeks to come because it's a bit too soon to draw conclusions yet (though I feel a 180 in my condition these days). But it's not conventionnal at all and certainly not scientific....

 

[Daffodil]

thanks gu3vara. i am so happy to hear you are doing better.

wow. i just looked up luc montagnier and he did indeed say that. how weird! thanks for telling me that.

personally, i am not sure how close we are. i get hopeful when i read research articles but then so many docs tell me "no way". how wonderful it would be if we could really be free of this one day.

i also think ampligen is better. 3 people with first hand experience said they had a clear mind by the 4th month. my brain is still fogged up, and sometimes, almost as foggy as it was before.