Antiretroviral Trial

Sorry to hear of your extreme struggles Daffodil. Yea, we are all going through our own difficulties, but that creates no reason for you to need to apologize for expressing yours. We are all in this together.

I only watched Part 1 of that video with Annette, and the treatments I heard mentioned, other than ARV's, have been in use for many years. Immunoglobulins have been used for 20 years without those kinds of success stories. Some success stories with AV's, but not that dramatic. Have they learned how to tailor the treatments for better response? Use of ARV's? What is Andrea on?

hi trsiten..i am not sure. i just wish we were getting the whole story..all the details about things...not bits and pieces. its not fair..we are in agony.

xoxo

I got a notification message that suggested I try a lower dose of LDN.

I cant believe I didnt think to try that.

Gonna ask for .25mg dosage from my doctor. From 4.5mg.

For three days I felt completely cured on my first try of LDN and then super crashed...seems like its worth another try at it, at a much lower dose.

completely cured? thats so wild. i didnt have that experience at all on ldn!

i am so worried. a top researcher said i was wasting my time with vistide and can do "real harm" to myself :-/

i dont even know what i am doing anymore. my fog is so bad i cannot even remember most of my reasoning to try this drug now. i am like a zombie!

i will do it for 4 months and see if anything happens i guess.

when my doc ordered the HHV6 antibody test....it came back as optical density ratio..ODR...of 14.27...with normal being <1. this was IgG. what the heck is ODR?

I haven't read this yet, but thought I would pass it along:

http://medicalxpress.com/news/2011-09-low-dose-naltrexone-ldn-body.html

GG

Updates Daffodil?

its becoming more and more obvious to me that AZT is the only drug that works for me. i was maintaining for several months after stopping AZT but eventually got sick again. now, because of the vistide i am on and having to stop tenofovir with vistide, i had to restart azt just over 2 weeks ago. just as before, i am starting to feel just a tiny tiny bit of a lift from the azt - just the start of a lift, really. this is accompanied by a very heavy, exhausted feeling just like before, too. i am sleeping very deeply and waking up sweaty like the last time.

also. my brain swelling has been even worse since i began the azt, which always happens long before i start to feel better.

i am also convinced the RAL isnt really doing anything...but not convinced enough to stop the drug.

now i wont know for a while if ths vistide is helping or the azt is helping or both. but...if my fog improves more than it did on the azt the last time i took azt, then i will know the vistide has done something.

this is horrible news because azt will cause my face and body to look sunken in...awful. but i suspected this all along. even dr. deckoff-jones was thinking of starting azt again but not sure if she has.

apparently, in hiv, azt most often causes an increase in HHV6 titres..so that MIGHt be at play too. in some cases, it also causes a drop in titres. some doctors believe that stopping hiv progression actually allows hhv6 to increase.

lost so many years now, and no end in sight....i am absolutely miserable again!

I agree with you about your conclusion with RAL, it did not do anything for me on its own either, but doctors had always warned about that and we were always told never to take it by itself or at a lower dose than suggested. But I think that together with the Vistide it can still work, that was how I felt about it taking it tgt with the Valcyte.

Are you able to get yout doc to take your HHV6 titers with a much more commercial test ? IFA IgG ?

Since you don't hv HIV It probably won't turn out the same that HHV6 titers will go up if you take AZT.

Daffodil, I have a couple of questions for you. Please excuse if you have already answered. What all infections have you tested positive for? Lyme? Other?

Have you ever responded to any antibiotics? I suspect, if you did, that you have co-infections that were reduced by the antibiotics.

How was your brain swelling diagnosed, or are you describing a feeling in your head?

May I encourage you. Do NOT give up now. We are, hopefully, on the edge of a breakthrough in cfs causes and treatment. Now if they can just find the answers before I get too old. Ha!

Paula

thanks guys. yes i have been tested for lyme several times...always negative. they cannot find any other infections in me...only high-ish IgG titres to HHV6. i am very encouraged that und is doing so well on high dose valcyte, even without HHV6 titres being that high.

und...you dont have CMV, right? sorry i cannot remember.

my mycoplasma pneumoniae IgG is a little high too, but a few antibiotic trials never worked for me, with no herx or anything. nothing happened at all on them. they were the first thing i tried.

you are right gowest..it is not the time to give up. the day-to-day is just so ughhhh

thanks for the support....it really helps

love
sue
xoxox

I cut a 4.5 mg Ldn tablet in half and took it. Felt good without my body feeling like someone took a baseball bat to it the next day. Going to try .5mg every day, from my doc and work my way up, month by month.

Still on Bht occasionally and edta/alpha lipoic chelation.

Disability claim got turned down for the 2nd time, so its time for a hearing and hiring a lawyer...

Sue, such a long struggle you have had. I have been a lurker for a long time. But I have to say something.

Who is managing your treatment? I am rather surprised, as a nurse, that someone would give you ATZ. However, I have been sick so long and my brainfog is so debilitating, I feel that was another lifetime and I know medicine has advanced since I was working.

I'm sure it has to be difficult to sort out just what is doing what for your health.

I don't mean to be intrusive here, but do you think any of the medications you are on could be causing your symptoms, especially the ones with the fullness in your head?

I do wish you the best of luck. We are all desperate. But I worry about your health and what effect the ARVs have had on it.

Like I said I haven't been able to read all the pages here, so please correct me if I am misunderstanding what you have written.

You take care, you hear?

Barbara

thanks, barbara. my doctor is a prominent HIV specialist and he is monitoring my bloodwork. i had to beg for months for azt. i made it clear that i would commit suicide soon because the agony was unbearable. i also asked for a very small dose to start with...so he finally gave in. the drug helped a little right away.

when i start azt, my brain fog gets much worse and stays that way for a long time, before it starts helping. higher doses help more. currently, i am on only 200 mg BID. i dont know whats in my brain - a retrovirus probably - but my brain is saturated with it.

its also possible that i have HHV 6 in my brain and the AZT is making that worse, which can happen. who knows.

i also worry about what i am doing to my body but from where i stand, i have literally no choice.

love
sue
xoxoxo

Try BHT for the hhv6, its made my mental status better. But make sure to take a couple days break from it each week (like the weekends). I started with 500mg of BHT a day and it helped right away.

Still on the no sugar and edta/alpha lipoic acid chelation. actually lowering the amount of zinc from one pill a day to one pill every other day.

My seeing a doctor at Asheville Intergrative Medicine for experimental treatments doesnt seem to count as seeing a specialist in disability lawyers eyes.

Sue, I wish you the very best. Sometimes we are just backed into a corner.

They make you jump through hoops to get disability which is ridiculous. Have you gone to a regular doctor just to humor them. I found going by my symptoms and not even mentioning a label as well as the daily impact me/cfs has had on my life really heped. Even I was surprised, well okay not that surprised, to look at that list and realize how this has eaten up my life. It was startling, to say the least.

You probably already know this. Good luck with the disability.

What do you think of this drug, Daffodil?

Pentoxifylline
http://livingwithchronicfatiguesyndrome.wordpress.com/

wow. i have high IL2 and very high TNF-a. perhaps someone could email dr. mikovits and see what she thinks of this drug! i would do it, but i am pretty sure she is sick of seeing my emails LOL

Daff can you remember the tests that did for your IL2 and TNF-a results. What the name of the tests were ?

hi und. i think it was called Inflammation Panel......Inflammatory Profile..Inflammation Profile?...i cannot remember....it was at VIP Dx but their test menu is no longer on the website.

i can send you my results again, if you'd like...