Antiretroviral Trial

[heapsreal]

What do you think of this drug, Daffodil?

Pentoxifylline
http://livingwithchronicfatiguesyndrome.wordpress.com/

Wow, its an aussie drug and i have never heard of it or from anyone who has used it. Most good ideas in australia get shipped overseas where they can make more money from it though.
Interesting all the same.

cheers!!!

 

[dannybex]

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

Sue, you can have "high" b12, but it can be "functionally low" or "trapped" according to Rich Van K and others. You might want to ask him about that in the methylation section. I recall that Jamie Deckoff Jones and her daughter were doing better with b12 and methylfolate.

 

[citybug]

hi, I have been reading Stphen Buhner's Healing Lyme. There are summaries of studies on herbs and ones that relate to specific markers IL-...
Stephania (only specific types) help with brain inflammation. Says it is hard to get but maybe easier since book came out. gaianstudies.org lists some herbal practioners.
I wish he would collaborate with WPI and test some on us.

 

[undcvr]

Go to planetthrive.org for a list of Stephen Buhner's herbs. I have used most of them before. They are great herbs to use in general anyway.

 

[Charles555nc]

Methyl folate is good stuff, great for your nerves/brain. Unfortunately its also a pretty big growth factor for bacteria, co infections... I only take it occassionally, like once a week at most.

Kinda how I take sulbutiamine, which is supposed to have anti viral/anti depressive effect.
Thiamine disulfide as a potent inhibitor of human immunodeficiency virus (type-1) production - Shoji S et al, Biochem Biophys Res Commun. 1994 Nov 30;205(1):967-75.

Appointment on the 28th and Im ask for trying (not at the same time):

Alpha Interferon
Deferoxine (DFO)
Lower Dose Low Dose Naltrexone (.5mg from 4.5mg)
Pentoxifylline

 

[undcvr]

Hey Sue, just dropping you a note to remind you to take lots of salined liquids while on the Vistide so that your kidneys wont be so burdened moving it out.

And salined means plenty of potassium too not just sodium. Perferably, keep the ratio of those electrolytes at 1:1 in your body and the saline drinks you mix up.

 

[Daffodil]

thanks, everyone i really appreciate it.

just got back from my 3rd infusion trip. i always felt something right away with the drugs i tried in the past (except abx). i felt twitching..or surges of energy...headaches..something. but with vistide, i feel nothing....:-/

 

[undcvr]

Well maybe from a contrarian point of view it is a good thing. I mean of all the things that you have tried in the past, they did help you some but not very much. Maybe they gave you some hope at the beginning only to taper off after awhile. From that point of view Vistide is different because it is doing 'nothing' rite away.

So maybe just give it sometime then so see how it goes. Are you taking it at the full CMV dose ?

 

[Daffodil]

thanks und. yes the full dose.

maybe it will take much longer to know....

xoxo
sue

 

[Charles555nc]

OK this is like the 10th time Ive checked this thread looking for updates/new crazy treatments that just might work.

Trying MSM 4 or 5 grams a day. Having to shop around for a lawyer who will actually take my disability case.

 

[Daffodil]

LOL sorry...i havent updated because nothing is new. i am still all fogged up and tired. i have done 3 infusions so far. the fog might be a little worse but i am not sure...but probably. dr. ablashi at the HHV6 foundation told me it would take 2 - 3 months if it works, and a patient told me that too. but i am very very worried and impatient at this point.

charles..i cannot believe you are having trouble getting disabiity for CFS! i thought almost everyone at least accepted it as an illness by this time! damn. i'm really sorry to hear about this added stress for you. people are idiots.

there are some people with HIV whose virus is undetectable in blood but in their central nervous system the infection is rampant and no meds help. maybe i have some weird mutant xmrv in my brain. then i'd be totally screwed. azt helped it for a few days a lot....ugh...what can this mean

i need a xanax

 

[Charles555nc]

Appointment today,

Got results back for Ra, connective tissue disease, lupus, ANA, and turned out negative for all.

Asked about getting tested for TNF-alpha and Il-2 (supposed to be high in chronic fatigue) but the rheumatologist said that was more a research center type test.

I told him about testing positive for XMRV and he had nothing to suggest other than keep up with research and that I should try Lyrica for the fibro pain. That Dr. Semble runs his office like a factory tho its kinda funny. First appointment I show up at 8am and theres 4 other people waiting with me. His nurses bring us all back to different rooms and he asks me all the questions I already filled out on the admission form then jumps between the rooms doing the same, then he did a physical exam, then jumped between the rooms, then gave me about 3 minutes of discussion time.

27th or 28 I have my chronic fatigue doctor annual appointment...really curious about pentoxifylline, iv DMSO, and deferoxine.


WOW just found this, Daffodil:

http://clinicaltrials.gov/show/NCT00000646

Basically researchers are trying to prove that TNF inhibits AZT, causes cachexia, and increases HIV expression. Another good use for Pentoxfylline it seems.

http://gateway.nlm.nih.gov/MeetingAbstracts/ma?f=102192220.html seems to already have verified the results of the first study i posted.

 

[Daffodil]

well, now that xmrv is probably not the virus we have, things are looking very bad from where i stand. i was counting on my brain fog being caused by hhv6, since most doctors have assured me that they think xmrv is likely not directly causing the brain problems...they say that the brain problems are a result of co-infection or inflammatory cytokines.

now, the possibilty i have always feared - that the brain and CNS is actually badly infected with a retrovirus, which would need special medication - seems like the reality.

anyway, i will continue with the vistide. i have been experiencing night sweats and a feverish feeling, but that happened with the azt too (which i restarted with the vistide) so there is now way to know which drug is causing this.

 

[Daffodil]

how could mikovits do this...keep telling us not to worry..that she was 100% sure. she kept telling us the politics would go away very soon, like she knew something was coming to show the truth. but there was nothing. how could she do this

 

[Charles555nc]

My personal belief is that not so many people would have a type of reaction to antiretrovirals if something wasnt there. Maybe an xrmv mutant and, to be sure, and there is also a coinfection of some sort assisting it (perhaps manipulating our body to produce tnf alpha or Il-2).

Xrmv is already slow growing, perhaps lowering tnf alpha would further reduce it.

Also isnt there some type of chemical coming down the line that can splice viral dna off our dna?

Have hope Daffodil, and dont push vistide past the point where you know its not working for you.

 

[Daffodil]

charles....thank you. i just dont see how it can be xmrv. and the blood working group checked for the lo-alter mlv-related viruses too and did not find them. the tre enzyme that can take hiv off the dna is about 20 yrs away from being marketed...and that is just for hiv...and they havent even been able to cure a mouse yet using tre.

i think azt and viread works to some extent on what we have..so maybe some of us very sick people can be kept alive for a while longer..

God only know whats in my brain now...literally.

 

[Daffodil]

i just read a paper i hadnt seen before: http://www.virologyj.com/content/8/1/443/abstract


so it can infect neurons!!! maybe my brain really IS saturated with it!!! that totally explains why low dose AZT worked for a little while and then stopped O M G my worst fear of all COME TRUE. there won't be any way out now for the patients who have severe brain fog (like me) until they find a way to get a whole bunch of drugs into our CNS....OMG

and can we even get rid of it from the neurons??? would treating it kill the neurons??????

 

[Charles555nc]

I read a big article about the build up of calcium intracellularly with hiv, cmv, herpes viruses. Maybe thats why edta chelation works wonders for me (binds to heavy metals and calcium). You ever thought of a calcium channel blocker like Verpamil, Daffodil? I might want to try that, myself.

Also read that Dr Cheney recemmends inosine for viruses...idk know much about that supplement.

There are ways of getting at viruses in the brain even without antiretrovirals, Daffodil.

 

[Daffodil]

From Dr. Mokovits:


Sue
There are XMRVs different strains, we know that now and have already found them..now we know why we have struggled because the sequence of the virus was incorrect..now we can sequence all the strains and find the right drugs for each one...there is more hope today than yesterday..not less..

 

[baccarat]

TNF-alpha inhibitors risks

Highlights some of the risks linked to TNF-alpha blockers>
http://www.uptodate.com/contents/tu...risk-of-bacterial-viral-and-fungal-infections

If we have an elevated TNF-alpha it must be for a reason, most likely the immune system is trying to kill off something there without succeeding.
From Wikipedia:
"TNF, being an endogenous pyrogen, is able to induce fever, to induce apoptotic cell death, to induce sepsis (through IL1 & IL6 production), to induce cachexia, induce inflammation, and to inhibit tumorigenesis and viral replication..."

In my mind, blocking individual cytokines/chemokines without first understanding the complex workings of our immune system is like introducing a trojan horse in the system.

Good luck.