Antiretroviral Trial

Sushi

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I don't do well either if glutathione is added to the IV. Perhaps because they typically give too much. Maybe a tiny bit wouldn't bother me.

Sushi
 

Daffodil

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hi all. thanks:)

been tested for lyme many times...

sushi....hard to know if feeling bad is a good sign...cant win!
 

Daffodil

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hi all. i am about to abandon this thread. i am still on tenofovir and that's it.

so after improving on the ARV's after a year and a half and then declining again, my condition has now worsened even further. i was at the ER last night for 12 hrs with chest pain radiating into my left arm and palpitations, which had been going on for a month or two. i had nausea too, and shortness of breath.

my bloodwork was abnormal with slightly elevated WBC, calcium, D-Dimer, and some other things. my routine bloodwork was always been normal before...the doctor suggested pericarditis. I told him about the CFS and retrovirus (i always have to since i have to list the drugs i am on). he seemed open minded and understanding.

they did EKG, chest X-ray, and chest CT. finally, the doctor decided that my D-Dimer elevation was probably due to inflammation from the disease and not blood clot formation. he suggested advil for the pain and that i follow-up with my GP and a cardiologist, and that i get an ECHO.

i am running slight fevers and something feels different this time, as if something is spreading to my heart...?

i have to wonder if this has something to do with the IV vitamins i took....but i dont see how that can be...i took the myer's 3 times and the glutathione 4 times.

if i am able to make it through this episode, i will go to NYC to see dr. enlander and see if i can start GcMAF. the odds seem against me now but i hope i can keep fighting.

thank you all for reading:)
xoxo
 

Daffodil

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thanks merry. i would just hate to die now, when we are so close! i think a lot of people die of myaocarditis in this disease. its hard to know what to do cuz if i just sit here, i could die..but if i start gcmaf, the inflammation might kill me!

anyway, i would rather die fighting...so i am going to NYC.

xoxooxo
 

Rrrr

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daffodil,

this is a wretched illness!! i'm so sorry you have to go thru this unending hell.

if there was glut in the IV: i can not do glutathion (sp?) in any form without it really making me super sick. for a week or two. i also get really sick from regular old vitamin IVs. for days afterwards.

nowadays, i can't do anything new (no new meds or supplements) without getting sick. i'm intolerant of anything new.

but i am on gcmaf + nexavir, and that is helping. tiny doses of gcmaf (0.10 cc per week) (or twice a wk), and it IS helping me. i'm now able to go on walks after 3 yrs of not walking. (i've been sick 22 yrs.) but i did go thru a hard patch on gcmaf + nexavir, too. for 6 wks. everyone is different. some did not go thru that hard patch, others did, and still otehrs got worse. and others better.

i have not been reading your thread lately, so i'm not sure where you are at, but if you ARE up for trying something new, i'd suggest LDN or gcmaf and/or nexavir. nexavir does not seem to make folks much sicker, and it does have some good studies that say it helps. http://livingwithchronicfatiguesyndrome.wordpress.com/2010/10/25/nexavir-kutapressin-for-cfs/

xxoo
rrrr
 

Daffodil

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hi rrr. thank you. i have been on nexavir before, yrs ago..it helped a little and then stopped. i am wondering why KDM gives it..is it only for people showing signs of active herpes viruses?

you seem sure the gcmaf is doing something...that is beyond awesome.

i really want to know what happens to NK cell function on gcmaf....no one talks about that. surely someone must have had this tested?
oxoxo
 

heapsreal

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Hi Daff,

With Pericarditis its common for pain to increase with positional changes like leaning forward or reclining back, the hi white blood count maybe indicating infectious cause of pericarditis. I dont think the myers cocktails would have effected you in this sort of way. Dr lerner has said that infections in cfs/me can infect the heart.

Im glad the doctor you saw was not a moron and listened to you and didnt treat you differently because u have cfs/me.

take care
 

Rrrr

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hi rrr. thank you. i have been on nexavir before, yrs ago..it helped a little and then stopped. i am wondering why KDM gives it..is it only for people showing signs of active herpes viruses?

you seem sure the gcmaf is doing something...that is beyond awesome.

i really want to know what happens to NK cell function on gcmaf....no one talks about that. surely someone must have had this tested?
oxoxo
i don't have signs of active herpes viruses. and i think the nexavir helps me. or gcmaf + nexavir is helping. not completely, but enough to allow me to go on walks again. that is amazing enough.

let me know if/when you go to see enlander. i hope to, too. getting there is the hard part.

rrrr
 

Charles555nc

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You could try what Im on Daff, if other stuff isnt working. I got a revised list of stuff (some I had to remove). But Im back up to 215 lbs and can do 25 push ups at once :) If your having heart problems try potassium once or twice a week, but start slow- I heard on another thread that cfs ppl are largely deficient in potassium...

Sorry to hear of your troubles.
 

dannybex

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You could try what Im on Daff, if other stuff isnt working. I got a revised list of stuff (some I had to remove). But Im back up to 215 lbs and can do 25 push ups at once :) If your having heart problems try potassium once or twice a week, but start slow- I heard on another thread that cfs ppl are largely deficient in potassium...

Sorry to hear of your troubles.
Hi Charles,

That's great you're continuing to improve!

Would you mind starting a new thread listing what you're currently taking (and perhaps what you started out with and have changed)? I've lost a lot of weight the last year or so, due to methylation problems, and also adrenal burnout, but would be very interested in your 'protocol'.

I'm sure it would be inspiring to many others as well.

Thanks in advance,

Dan
 

Daffodil

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thanks all. i dont think i have the brain power to add a supplement..i am really out-of-it at the moment, can't even breathe too well. always feverish. am trying to think of a way to get to NYC without exerting myself but i dont see how. even lifting my left arm brings on more chest pain. dont have the energy to even shower let alone going to an airport, hotel, arranging things, buying food, etc etc. can't be done. ugh
xoxox
 

globalpilot

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This is why I started taking liposomal GSH ... my GSH is always dismally low. I'll get it tested in the next few weeks again and see if the liposomal is raising it. But yes, if it can stop replication of these viruses, it's a great thing to consider taking.

http://www.ncbi.nlm.nih.gov/pubmed/8911579


"This would be in agreement with data obtained in cells exposed to herpesvirus type 1 (a DNA virus) or to Sendai (an RNA virus), showing that the suppression of virus replication by GSH is related to the selective inhibition of envelope glycoproteins. These results suggest a potential role of GSH in combination with other antivirals in the treatment of virus-related diseases."


interesting. all these years and i ignored glutathione lol
 

maryb

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Daff - I don't know whether anyone has replied to your request for help/companion to help to get you to NYC. If not maybe think about starting a new thread so we can keep it on the front page so everyone will see it. Hope someone can help you get there.
 

taniaaust1

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I hope you continue with this thread as its always good to be able to easily follow up what you are trying even if it isnt retroviral drugs.

If you are too currently sick to fly, there are other things you could try in the meantime even if you just work on seeing what simple things can help certain symptoms rather then trying to actually treat the actual illness, whatever that is. One never knows when one will find something which will help a little and at times it is a simple thing.

My latest (only a month ago) was finding out that over counter anti-inflammatory seems to improve me a little and before that only a few months back.. finding out that selenium (helps to lower copper and I had high copper on hair analyses) and molybdenum (which I found I had deficiency of) has helped some things for me. After 15 years of this illness.. every now and then I do find something which helps a little one of my symptoms.

Keep on searching for things to help but keep in mind that there may be simple things out there you may not have tried yet. Hopefully the bigger answers will come soon.
 

Tony Mach

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hi all. just wanted to report on my AZT+RAL trial. Have been on AZT 300 mg/day and RAL 400 twice a day for almost 2 months, with 1 week off the drugs after 1 month.

Things seem to improve a little initially but have now worsened completely. severe fog/swelling, malaise, perspiration, feverish feelings are all back.

June 3rd i will ask my doctor to either add Tenofovir, or if he refuses, to replace RAL with Tenofovir 300 mg/day. Also will ask to increase AZT.

Was going to send blood for RNase L, NK cell, and cytokine testing but now not sure...perhaps i will wait because cost is high and i am changing drugs.

i have tachycardia, which started after the RAL. severity correlates negatively with CFS improvement....if i am a little better, the tachycardia increases.

have heard of other negative responses to RAL...

please keep in mind i have not yet tested positive for XMRV.

sue
xoxo
Hello Sue/Daffodil,

is there a summary somewhere what you have been taking (when/how much) and how your lab results and symptoms where affected by it, and what the side effects were. Reading through 1538 posts (now 1539) in this thread is a bit too much for me. If someone could supply a link that would be just dandy.

Best,
Tony
 

Daffodil

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hi charles. wow going back to work? omg.

are you on gcmaf as well?

no updates..still doing very poorly. still on tenofovir and some supplements. d-ribose seems to have helped the chest pain. am planning to try gcmaf soon.

xoxox