Antiretroviral Trial

[Charles555nc]

http://www.hss.edu/professional-conditions_tnf-inhibitors-used-in-hiv-positive-patients.asp

Tnf-alpha linked with progression and upregulation of hiv disease.

What now Baccarat?

Also, we were discussing pentoxylline specifically, which lowers tnf-alpha and il-2, but is not a "blocker" per se.

"Wallis et al[11] found that pentoxifylline decreased plasma HIV RNA levels in a group of untreated HIV+ patients with pulmonary TB, but had no proven effect on TNF-a, CD4 cell count or patient survival."

I agree that, immunosupressants are almost never the right choice in medicine imo and even less in chronic disease.

 

[Daffodil]

if i had know BWG was negative and neurons could be infected....i would have found some way to go to ottawa. i didnt know it was going to be this earthshattering. dr. brewer says that since many healthy people might carry the virus, then maybe something else is needed to get sick too (like a co-infection??)...

i just cannot believe this. if my neurons are infected, what will i do? no it cant be. it just cant be happening

 

[Daffodil]

thanks sickof. i am sorry i always post my emotional crap here. i dont really have anyone else to talk to about this but my mom. i am always too anxious. and i am just so sick of living like my head is in a vice. its been 20 yrs. i just thought there was alight and the end of the tunnel but it keeps getting further and further away.

 

[gu3vara]

thanks sickof. i am sorry i always post my emotional crap here. i dont really have anyone else to talk to about this but my mom. i am always too anxious. and i am just so sick of living like my head is in a vice. its been 20 yrs. i just thought there was alight and the end of the tunnel but it keeps getting further and further away.

I think it's pretty encouraging that Andrea is doing well while she's been sick for nearly as long as you. There is still hope of getting better. Whether it's from ampligen, gcmaf or any other treatments WPI has in their sleeves (let's hope so). I hope those options will be more affordable eventually.

 

[mellster]

I am saying this as an almost complete layman (with some medical background) - when I heard Levy talk about silencing the immune system I shook my head. There is a reason why the immune system goes into overdrive, maybe it encountered serious danger an is throwing all resources at it and while it is possible that it might get stuck in overdrive, the more likely reason IMO is that it hasn't cleared the danger yet. So, even without knowing the exact pathogenesis I strongly believe that strengthening the immune system (in combination with targeting specific reactivating pathogens if necessary) is the way to go without any further insights into the cause of ME/CFS. The sooner it gets rid of the reactivating pathogens, the sooner it will quiet down when it considers the work done. That may also explain why people do better when eradicating viruses in AV therapy that - by conventional wisdom - even in large quantity should not have caused all the different severe symptoms the PWC experienced. Maybe that helping hand caused the body to calm down again, reducing the various inflammatory responses.

 

[Joopiter76]

Does anyone know how ARVs work in people who already developed AIDS (including co-infection). How long does ist take for the ARVs to work in this state.
I guess not so well. But this may be the reason why in ME/CFS ARVs sometimes dont work so well.

 

[Daffodil]

thanks sickof. just so hard to live with this head thing, especially knowing it might be analagous to when people with HIV-associated cognitive impairment have undetectable virus in blood with HAART yet have the disease progressing in their brain. that's what it feels like to me and i know there is no treatment for that. and its an unbearable feeling. so i am not sure this is much hope for people like me if they cannot even help HIV patients with it.

 

[Ecoclimber]

Daffodil I wouldn't worry this soon as it seems that your feeling came on with your recent changes in your medical protocol. If you are really worry or concern, you might consider a scan such as SPECT scan to see if something is really happening which might alleviate some of your concern.

 

[alice1]

hi daffodil,
i know pain meds have been mentioned so i was wondering if you've tried them for a bit of relief.
big hug.

 

[Daffodil]

thanks alice. i had a SPECT scan many yrs ago...took a ton of begging to get one ordered but it was normal. this was many years ago, though. but my fog was very bad then, too. i think its a functional SPECT thats abnormal for many CFS patients.

how are you doing?

 

[Daffodil]

i have been looking at my cytokine patterns again..from april 2011 and how they flipped after i took ARV's. maybe HGRV infection prevented my body from producing certain cytokines and then when treated it, everything got flipped. HIV can also inhibit production of certain cytokines ...people with low CD4 counts and HIV have a different cytokine pattern than people with high CD4 counts and HIV. i dont even know if what i am saying makes sense i am so foggy

 

[Daffodil]

hi heap. no i havent noticed anything. maybe a little worsening but not sure. it could be from the azt too, which i restarted at the same time i started vistide, cuz i had to stop tenofovir. on some days i am again able to go to the store like i used to when i was on azt a while before.

my nk cell function jump is a good sign but again, i am sure it was from taking azt for so long. i wonder if it would hold up after i stopped azt.

we just had a movie on about SARS in toronto...i was reading how some SARS survivors also ended up with CFS. very interesting. my doctor worked with SARS.

xoxo

 

[Charles555nc]

Got my cfs doctor appointment tommorrow, so I looked up on new therapies. You might want to consider these, Daffodil

http://www.plosbiology.org/article/info:doi/10.1371/journal.pbio.1000598

Statins useful against cmv infection

http://www.ncbi.nlm.nih.gov/sites/e...tation&defaultField=Title Word&term=Mackenzie[author]%20AND%20Cholesterol%20manipulation%20by%20West%20Nile%20virus%20perturbs%20the%20cellular%20immune%20response

WNVirus shut down by statins

10When different statins were tested,and simvastatin [Zocor] exhibit the strongest in vitro anti-hepatitis C activity, lovastatin[mevacor] and fluvastatin [Lescol] had moderate inhibitory effects, and pravastatin{pravachol] had NO antiviral effect (So the type and dose of statin are likely effective) (Delang L, Paeshuyse J, Vliegen I, Leyssen P, Obeid S, Durantel D, Zoulim F, Op de Beeck A, Neyts J. Statins potentiate the in vitro anti-hepatitis C virus activity of selective hepatitis C virus inhibitors and delay or prevent resistance development. Hepatology. 2009 Jul;50(1):6-16. In this study, A combination of statins with interferon-alpha (IFN-alpha) further increased activity. The authors' Conclusion: A combination of specific HCV inhibitors with statins may result in a more profound antiviral effect and may delay or prevent the development of resistance to such inhibitors.
(Zocor (statin) inhibits hep c)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2211926/

Statins reduce hiv-1

http://www.co-cure.org/Chia.htm

Alpha/Gamma interferon very effective against chronic entervirus infection. Article states entero virus could result in chronic inflammatory state, like cfs.

 

[Daffodil]

thanks so much charles

at the moment, my doc wont let me take anything other than what i am on. he doesnt even want me on vistide but i am going through a nYC doc for that. he wont even give me methyl folate.

good luck on your appt and please tell me how it went.

sue
xoxo

 

[alice1]

hi daffodil,
how many infusions are you suppose to have?? and did ths ny doc give you a time frame as to when you may start to feel a change?
xo

 

[Daffodil]

hi alice. well, the people whom it has helped, have told me that they felt a change in 2 - 3 months. dr. ablashi of the HHV6 foundation said 2 - 3 months, too.

i dont know if i have any hope left.

{{alice}}

 

[Charles555nc]

Hey Daffodil,

Got alot of lab results back at my appointment:

Antibodies to hhv6: high 11.0

Antibodies to epstein barr: high

Chlamydia pneumoniae Igg: high 1:256

Mycoplasma pneu Igg: high 110

Low Testosterone 173

High iron



Next labs:

NK cell panal for possible interferon usage

By request: coxsackie virus a and b (supposedly seen alot in cfs)

Interesting Article about iron and ms--
http://articles.mercola.com/sites/a...eresting-Novel-Surgical-Treatment-for-MS.aspx

Relevance to us- viral/bacterial cns infection that causes ms, by sequestering iron and causing a build up in veins that supply blood to the brain. Perhaps an iron chelator, desferoxamine or exjade, both of which show anti viral activity against hiv (read xmrv) could hit the virus and remove iron from the veins at the same time.

Perhaps like those ppl with ms, we have some infection in our cns like the back of your brain (where you said you felt something growing and I have sharp pain) is being blocked by excess iron or iron deposits. Iron serves as a growth factor for most infections, bacteria/viruses. So maybe once it get desposited, fuels an infection that cant go away until its addressed- not to mentition the decreased blood flow to the brain.

 

[alice1]

i'm curious to know if anyone has had the dopler ultra sound on the jugular veins.there could be blockage just like ms.

 

[Charles555nc]

Btw Daffodil, methyl folate is available from vitamin stores, so you dont have to get it from your doctor.

Checked this thread like 100x times in the last two days...

Hope your doing ok Daffodil!

 

[Daffodil]

hi guys. alice....someone on the cfsexperimental yahoo group had that test..if you like, i can find out who. i cannot remember her results. was it iron that is clogging the veins of MS people? i cannot remember.

charles...thanks for telling me about methyl folate. i just got back from my 4th infusion trip. it wasn't easy - a lot of nausea despite 2 doses of anti-nausea med. my brain feels absolutely saturated and somewhat painful. lymph nodes are aching. no telling if its from the drug or just the traveling.

in general, i would guess that i have been worse since starting vistide. i will continue.

hope you guys are doing better!

sue
xoxo