Discussion in 'XMRV Testing, Treatment and Transmission' started by Daffodil, May 29, 2010.
Tough weekend for me, Updates>?
sorry to hear about the tough weekend. still bad here. no changes. spoke to someone who knows a few patients who did well on vistide....she says one of her friends took 10 months to feel improvement and was on it 2 years! 2 researchers told me i should know in 2-3 months whether its working or not.....cannot afford 2 yrs of the drug.
Cutler also says ALA must be taken every 3 hours for at least 3 days or else it can redistribute mercury in the body. So you have to get up 2-3 times during the night to take it (during the 3 day chelation period), then stop for a week to 10 days, then start the whole process over again.
Here's a good link:
"Basically, ALA must be taken no less often than every 3 hours, around the clock."
"Taking it less often means running a higher risk of regression or damage. Taking large single doses or once a day doses can result in permanent neurological and other damage."
I'm sure others disagree with him on this (like those who take it for neuropathy or diabetes), and I have no idea if he's correct or not -- but he's quite adamant regarding the need to take it at low doses, but every three hours.
She not trying to chelate anything tho, which is why I did not provide that info and recemmended low dose...
I cannot tolerate it in chelation doses myself since I got sick.
Make sure to take it with food and lots of water.
i think i am developing anemia cuz my RDW has been high on 3 bloodtests now, and its getting higher on each test. also, my MCH is high too, albeit just a little. wonder if i will have to stop vistide...am waiting for reply from doctor...
doc says he isnt worried about it
Daffodil, besides vistide infusions, what other medications are you now taking, if you don't mind saying? Are any of these helping you, as far as you can tell?
Anything working for anybody? Sigh.
Ive started Nexavir injections and my natural killer cell panel through Quest came back normal. ill have to check it first to see if they did the right test. Hate Quest.
I guess Ill have to wait for alpha interferon.
kravits..i am also on azt and raltegravir. i had to stop tenofovir because you cannot take it with the vistide. i do feel the antiretrovirals have helped me, but i believe i have a central nervous system co-infection that is keeping me from recovering; either that, or i still have some retrovirus in there.
the antiretrovirals made my natual killer cell function go from 2 to 60.
i am starting to get an inkling that vistide will help me but i may have to stop the drug. i was up all night last night vomiting from the infusion and/or probenecid. i vomited about 7 times i think, and couldnt eat or drink anything for about 18 hours. i am severely nauseaus right now too.
i will ask my doctor to prescribe a much stronger anti-nasuea med than i already take but i understand that persistent nausea could indicate probenecid allergy.
i know someone who ended up with renal insufficiency thanks to vistide ..ugh. its such a shame i cant just get cmx001 and not have to go through all this hell.
charles..may i ask what exactly your natural killer cell function is?
Basically slept a week of my life away and got the feeling it wouldnt pass this time. Yesterday I took my usual chelation protocol, one selenium pill 200mg (I usually dont take because of MS like symptoms), one gram of vitamin c (trying to prevent deficiency) and Nexavir.
This morning, without sleeping, I went and did 3 chores.
Did the selenium reverse a deficiency? Or did the Nexavir actually work? (I took a double dose because Im crazy impatient)
According to quest, my nkc function assay, FC lU30 is 19
Which on a scale of 8-170 is considered normal.
Idk seems like the right test but I wish the results were different
charles....how long have you been on nexavir?
about the natural killer test....i dont know why the normal range is given as 8-170 because i read somewhere that healthy people have 60-80?
19 is certainly not as bad as some people have!
1st Nexavir injection Daffodil yesterday.
Im confused are you saying that 19 is not that bad, or really bad?
Halloween, coming up.
I got the whole zombie costume down pat
Daff you can try taking lots of Ginger for nausea and using Seabands for nausea too.
thanks guys. whats seabnds? charles...i dont think 19 is that bad.
sometimes i wonder if i should just put myself back on valcyte and wait for cmx001 to come out. but valcyte didnt do anything for 3 years before and probably wont now. ughhhhhhhhhhhhhhh
this nightmare just keeps going on and on and on and on.....
If you were to go back on Valcyte you would have to be on the high dose and would have to wait longer than I did to feel anything. I am saying this because your HHV6 titers are twice that of mine and at 900mg 1X a day Valcyte did nothing for me.
Can you tolerate it at 900mg 2X a day for 3-6 months. Very few pple can from what I understand, along with that will come a barrage of side effects which i managed away with supplements. The other option could be high dose Valtrex (6-8gm)or Famvir (3-4gm) ? Take that for awhile and wait and see.
I stumbled onto something that worked for me by accident, Tamiflu longterm, 1 cap 2X a day. This works even after having had the flu shot for the season. Strange. This is cheap and low in toxic side effects, something to consider.
tamiflu lol thats so weird. my old doctor suggested i try tamiflu years ago so i went out and got it but never tried it.
und...i am just amazed that these things work for you. i know someone who took 6 valcyte a day and it still didnt help him. i don't get it.
i cannot tolerate more than the regualr valcye dose....in fact, my liver enzymes become abnormal even on the regular dose, but i just ignored it the last time.
1:640 for HHV6 is not even considered very high. i spoke to someone who researches HHV6 - a really nice french fellow. he told me many healthy people have that titre. i wonder if the drugs are targeting something else entirely in you. who knows what it is....
i have been experiencing night sweats daily.
this week, i am sending blood in for the cytokine panel. probably another big waste of money. my brain feels the same. my body doesnt feel awful, but my brain is totally a mess. how can this be??? it's as if my brain is a completely separate entity from my body.
honestly, right now..i am not very hopeful at all. if it is an HGRV, it wil be years before i find out.
I had night sweats for 3 years and they stopped 95% after I did two weeks of Famvir. Oddly enough, didnt touch my other symptoms.
I think I might try Tamiflu, I mean its over the counter right?
I know you said you sometimes forget to take vitamins, daffodil, but I think its important to prevent deficiencies 1 gram of vitamin c, 200mg of selenium, and some zinc, every 2 weeks might probably help.
And you still havent tried chelation, edta, alpha lipoic acid, or exjade all of which have demonstrated anti retroviral effects. I personally would love to try exjade an iron chelator but my iron was only a little high and now its a little bit lower. Cant convince anyone to prescribe it for me.
And theres always tindimax if you think your lyme tests are false negatives (tests are max 30% accurate)
tamiflu is not over the counter! in fact, there are often shortages of it because its used for ...sars? h1n1? one of those..cannot remember. the govt tends to hoard it.
i keep hearing about people who ended up with kindey damage from vistide..one even almost went blind.
now WTF do i do!!!???????????? arghhhhhhhhhhhhh
Come on Daffodil,
You know what to do, you try the vistide for 3 months or however long your supposed to take it to know a difference, and if you dont feel any better and your labs arent any better, then you try something else, interferon, nexavir, vitamins, whatever.
Dont hurt yourself on something expensive and doesnt help. You know that.
Im up at 5pm for the first time in 2 weeks lol.
i cant pay for interferon....done nexavir...foscarnet is even more brutal...vitamins wont work; this is a very very old, established infection....maybe i can just get back on valcyte and wait for cmx001 to come out. the nausea has been so bad since i got back from the trip thursday...i have to think about something else while i eat cuz if i think of food, i will throw up.
i am very impatient, living in this coffin now 19 yrs.
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