Antiretroviral Trial

[Daffodil]

{{{charles}}}

 

[Charles555nc]

Just wanted to sum up what Im doing while I feel less foggy today,

Zinc gluconate- half a pill twice a week
Benicar- one pill every 3 days- less fibro and joint pain. having some heart racing on it tho.
Alpha Lipoic Acid and EDTA chelation- i tried them seperately and they dont do anything, but together I have a large bowel movement and feel much better (dont take chelation same day as zinc) Less brain fog, better digestion, better nerve sensitivity.
Sulbutiamine- Natural anti depressant, only thiamin supplement supposed to boost your thiamin levels in your brain and cns. Thiamin deficiency is ridiculously destructive. Possibly mild anti infective
Yugols Iodine- 2 or 3 drops a day, or 4 or 5 drops twice a week. Anti infective.

Diet- No sweets, no diet food or drinks. Drinking only bottled water. So mostly salads and lean meats.

Checking into exjade- iron chelator, and alpha interferon on this coming Tuesday.

 

[undcvr]

I thought deckoff jones was one of the few pple that first encouraged CFS pple to be on ARVs ?

I think that alpha interferon is a great therapy.

 

[Daffodil]

und..no this was a comment written by someone else, in response to her blog

 

[Daffodil]

well i have asked about 7 times now..maybe 8..to have this thread deleted and they wont do it. interesting.

 

[SOC]

well i have asked about 7 times now..maybe 8..to have this thread deleted and they wont do it. interesting.

Daffodil, they're not going to do it because all the posts in the thread are not yours to delete. I strongly recommend you take time to delete your posts individually if you don't want that info available.

It appears you can only delete back 2 months, so that won't be that hard to do. Any posts earlier than that may have to be deleted in a different way or by a tech person.

I guess this is a lesson to all of us not to post any information here that we wouldn't want to see in the Chicago Tribune, ERV's blog, Bad Science, or anywhere else.

 

[Daffodil]

yes i was very very careless and i sort of knew i was being careless..i was so depressed i didnt care. i know they cant delete others's posts..i was just asking for mine. but anyway maybe it is better for me to somehow go through the 128 pages on my own cuz there is a lot of good info on this thread, even for me.

this fog is making me completely insane.

 

[SOC]

yes i was very very careless and i sort of knew i was being careless..i was so depressed i didnt care. i know they cant delete others's posts..i was just asking for mine. but anyway maybe it is better for me to somehow go through the 128 pages on my own cuz there is a lot of good info on this thread, even for me.

this fog is making me completely insane.

I think many of us have posted things here we wouldn't want in Trine's articles or ERV's blog. We all need to be more careful if that type of person is going to be here trolling for information to pick out of context.

You don't have to go through 128 pgs. I believe you can only delete the posts since Aug 8 or so. That wouldn't be too bad. It appears the older stuff is going to have to stay until Dainty is back, according to kurt's earlier post.

If you're really concerned about anything recent and you're willing to PM me your password, I'll log on as you and delete as many of the recent posts in that thread as I can. My best suggestion, though, is that you bite the bullet and do it yourself so you know it's done properly.

Sorry you're in this situation, Daffodil.

 

[Daffodil]

thanks SOC. i'm a little calmer now. every now and then i get in a panic and feel like i am buried underground. its awful.

i have decided to make a consultation appt with a neurosurgeon during one of my trips to the US and ask him about my neck MRI issues and see if there is any way that that could be contributing to the brain fog. i have asked 3 infectious disease doctors whether they think these disc issues could cause that and they said they doubt it, but that i should consult with a neurologist. i could see a neurologist here, but i have had such bad experiences with them in regards to CFS.... and my neurosurgeon appt isnt until feb/2012. anyway, it would be good to get this cervical thing ruled out somehow.

in a few weeks, i am also planning to get HHV6 IgG antibodies, T cell receptor gene rearrangement (was borderline abnormal last time), and TNF-a testing. its odd because every lab wants frozen blood for cytokine testing but VIP/UNVEX does it on ambient samples. ARUP labs is the only one i can find that does reliable interferon gamma testing but i cannot get blood to them so i will have to leave that test out. i also dont want to pay for a full cytokine panel at UNVEX.

thanks for reading
xoxo

 

[Daffodil]

so i think that something called IgG subclass 3 might give me a clue...maybe i can have that tested too.

 

[undcvr]

That is gamma globulins and different from interferon gamma, you know that rite ?

Also I don't think there is a commercial test out there that does interferon gamma testing only gamma globulin testing.

Check it out and make sure.

 

[Daffodil]

hi und. well ARUP labs does interferon gamma but quest wont send it there and they wont take blood from canada

i was just reading that HHV6 causes decreased IgG3 and HIV causes elevated IgG3.....so maybe if its decreased, i could have active herpes virus? i dont know....sounds like a waste of money i guess. most CFS patients have decreased IgG3 anyway so what does that mean if they have a retrovorus?

 

[SOC]

...ask him about my neck MRI issues and see if there is any way that that could be contributing to the brain fog.
.
.
.
...in a few weeks, i am also planning to get HHV6 IgG antibodies,...

FWIW, based on my daughter's and my experience, I suspect neurological infection with HHV-6 to be the culprit in our brain fog. HHV-6 is neurotropic and our cognitive symptoms improved dramatically after treating HHV-6. It might take some time (and possibly higher doses) to get at a neurological infection.
Good luck!

 

[Daffodil]

SOC thank you so much for that message. so many have tried to help me..but its always the simple HHV6 thing that gives me the most hope lol

xoxoxox

 

[Tristen]

Yes, one can test IFNg levels. Mine tests high. I'm HIV-

I believe that for myself the brain fog is caused by inflammation (secondary to an immune response to CNS infection). Some anti-inflammatories will reduce symptoms, but of course tx the infection would be best. More CSF (spinal fluid) studies coming up soon.

 

[Daffodil]

tristen..which spinal fluid studies? please let me know.

may i ask where you had your IFNG tested?

thank you!

 

[Tristen]

tristen..which spinal fluid studies? please let me know.

may i ask where you had your IFNG tested?

thank you!

Dr Peterson and Bond Uni in Australia, are gearing up for it

My IFNg was done with Redlabs....not sure if you can still get that done through VIP (or whoever they are now)

 

[Daffodil]

thanks tristen. o yea..i forgot...VIP/UNVEX does it but then i have to pay for the whole panel. it might even be cheaper that way. but something is weird..every other lab takes only frozen blood and only UNVEX takes ambient. i am wondering how they can be accurate

 

[undcvr]

Hey Daff yes my EBV tests were all PCR DNA RT (Quali) and the results were 'detectable'. So it was an infection I could actually see and know that it was active. It was also an infection that came and went in spurts of relapses and stress usually triggered it coming back.

HHV6 though is hard to test for with PCR DNA, no commercial lab does that test to my knowledge. Montoya uses IFA IgG or IgM can't remember and his cut off to an active infection is 320. Bearing in mind that anything above 40 is already high.

If you test for EBV using titers only, I would assume that anything above 320 could also be interpreted as an ongoing infection.

 

[Tristen]

Hi Tristen,
Have you been diagnosed with cfs/me as well or have fatigue as a symptom of HIV as well as other symptoms etc. I may be reading your post wrong, does it mean you have HIV or HIV neg(HIV-)

Its been awhile since i had them tested but my IgA immunoglobulins tested high and IgM and IgG was not very far off being high. these improved when i went on antivirals.

IgG (6.6-14.9) IgA(.7-3.6) IgM(.3-1.4)

pre av's 11.3(IgG) 4.3 (IgA) 1.3(IgM)

on av's 9.6 (IgG) 3.8 (IgA) 1.1(IgM)

Hi Heaps, great looking improvements. Yea I meant HIV negative. I have me/cfs. Fit the CCC and CCI perfectly. NK cell function stays between 1-4. Elevated IL 1b, 6 & 8. Also elevated TNF, RNaseL, and Elastace.

All of these Immune values improving after AV's seems to be a fairly common story. True that HHV6 is hard to detect. It's continually in and out of hiding. I've tested negative 3-4 times over the last couple years, not sure that's even enough. I haven't done the EBV PCR, but feel I really should after reading some of these posts.