Antiretroviral Trial

[Daffodil]

hi 5150! some people with CFS take it for 6 months, some 9, some a year...i guess its similar to the valcyte protocol. i guess staying there would be a problem..i can stay with relatives but once they find out i could have a contagious retrovirus, things would get weird to say the least lol

in michigan, lerner didnt have an infusion room...i was going to have to get the drug at the local hospital...but things might be a little different with dr. peterson...so if he takes my case, i will see how much it would cost there.

another option is WPI...maybe they will be doing things like that, too.

in any case, it will cost 50 - 60K at the very least...with no guarantee it would help, and if it does, no guarantee i wont relapse. and it could bankrupt my mom. so it would be a huge decision, to say the least.

knowing that there is another med to try does give me something to hope for, so it helps in a way, even if i cant do it.

hope you are hanging in there....and thanks for the message!

sue
xoxo

 

[Daffodil]

about my energy level..its not improving any further really. the improvement has stalled at maybe 30% or so..some days 40%. but i obviously still have an active brain/CNS infection...

 

[taniaaust1]

in any case, it will cost 50 - 60K at the very least...with no guarantee it would help, and if it does, no guarantee i wont relapse. and it could bankrupt my mom. so it would be a huge decision, to say the least.

Id think that anything which isnt proven and isnt known the likihood at all of it working and which could bankrupt your family ... just isnt worth those odds till more is known about it. Think about how you'd feel if you did take that high risk and it didnt work. It would make the depression you get now at times far worst. Try to look after yourself both physically AND mentally.

I really hope you dont go for those shots in the dark out of desperation.

 

[mojoey]

I would contact the stem cell clinic(s) in India and see if any of them know of open-minded physicians. Another option is contacting Indian doctors in the U.S. such as Sudhir Gupta (who works with the HHV6 foundation and is well connected in India) and seeing if they know of anyone.

 

[undcvr]

I think Mojojo is rite. I would consider India not because it is more 'open-minded' exactly but just that it is easier to get away with more stuff in other countries that are not as heavily regulated as the Western countries ( read: less developed ) and cost wise, it will not bankrupt you that's for sure. Coming from East Asia myself I have some reservations but I also think that the Indian medical industry is vastly under-rated. I know that they can easily get you Vistide if you wanted it ( read: just keep asking and asking for it ).

 

[Live And Let Die]

Daff,

Give Famvir a shot.

 

[mojoey]

Live And Let Die What is the rationale for that if Valcyte didn't help?

 

[Daffodil]

und..you're from east asia? i didnt know that..where from?

joey...that is an excellent piece of info you gave me, thank you. there is also dr. bhakta at the wpi...she might have some connections also. india would definitely be a lot cheaper....but things would be very complicated there for me..long story.

what if dr. peterson thought i was a good candidate for vistide? then it wouldnt really be a shot in the dark, right?

the likeihood of them finding hhv6 in my spinal fluid is remote, especially now that i am on valcyte...so i guess antibodies would be the only clue. and i never had them higher than 1:640.

all i know is, i am not going to sit here and wait anymore. i need my brain back. i cannot exist this way anymore. after 19 yrs, its really strange that i havent gotten a tumor yet..but it cant be that far off.

at least things seem to be moving forward with CFS....cant wait to hear people's experiences at the WPI clinic

 

[heapsreal]

@Live And Let Die What is the rationale for that if Valcyte didn't help?

Theres a rumor that famvir has a wider range of action then is known about. Apparently it was quicker and easier to get famvir to market for herpes 1 and 2 as well as shingles. To market it for ebv and cmv would have taken more studies, money and time which big pharma didnt wait for as the longer it takes to get to market the longer it takes them to start earning money off the drug. In the book, reviving the broken marrionette, the author mentions that it has some effect against retroviruses(this was written before xmrv was known about), i havent been able to find any other info referring to this but maybe the author has some info. It is also effective against hep B. Several people on this board have had their hhv6 and or cmv titres come down with famvir. So anecdotally its seems it maybe effective, plus its cheaper and alot less toxic then valcyte. I believe famvir has helped me with cmv, although taken a backward step this year, my recent dosage increase seems to be helping again. Maybe and probably famvir and valcyte work in different ways so u can attack these viruses from different angles, the shot gun approach.

cheers!!!

 

[Daffodil]

in april of this year, i had a t and b cell gene rearragement test. there was no clonality detected in the B cells but with the T cells, it says "atypical DNA fragment pattern present that is not diagnostic of a clonal TCR-gama gene rearragement. This may represent an emerging clonal process which cannot be resolved from this data...."

so i wonder if i might be pre-cancerous...or pre-pre-cancerous!

 

[heapsreal]

daff, our first line of defense against cancer is our nk cells, so being that most cfsers have poor nk function i would say most of us are in some sort of pre cancer state or have a higher risk factor for cancer.

cheers!!!

 

[Live And Let Die]

I only say give famvir a try because it seems you havent tried it before. I don't have a profound reason. It's less toxic than Valcyte and cheaper I think. Valtrex did virtually nothing for me at doses between 1-3 grams a day but famvir at 500mgs 3x a day has done something.

Also, if you have having severe anxiety, I suggest trying to treat that. I know how horrible it is and I'm not saying to start popping pills for everything, just saying it might help. No need for added uncontrolled stress.

 

[Daffodil]

thanks guys. ok, i am going to ask my doc for famvir

who knows, maybe the valcyte will do something later.

this T-cell situtation has me worried...and i am always worried anyway...and this severe fog doesnt help. i cant think and the same thoughts keeps ruminating in my mind....like i am some weird zombie.

i was talking to my uncle and if it turns out i need cidofovir, he says he thinks it would be cheaper at offices where they can do infusions w.out my having to go to hospital....and wpi has an infusion room. maybe i should just stick with them and not send my papers to dr. peterson. i dont know....they both seem like good options.

sorry..i am stuck on cidofovir and can think or talk about little else. whats wrong with me!

(if a nice american man with insurance out there wants to marry someone with CFS for a while, please let me know LOL)

on second thought, you dont even have to be that nice

 

[Daffodil]

i am feeling pretty horrible brain-wise and woke up every 20 min last night due to severe neck pain / cramping. could be a good sign from the valcyte...but i had a horrible neck feeling before the valcyte, anyway...so who knows. my mattress isnt really sagging but i feel i need a very hard one at the moment...even the slightest sagging makes my neck much worse.

i have also noticed 2 small circular patches of scaley skin - one on my right middle finger and one in the middle of my right palm. i also have itching on my right underarm. i used to have severe itching on both underarms but since i stopped azt, it is only on the right one and less severe. i think it is from the raltegravir. i looked up lymphoma and cutaneous lymphoma can also show up like eczema so now i'm a little worried about that.

i am confused as to whether i should be more aggressive about going somewhere to get cidofovir or whether i should just wait it out with the valcyte and possibly famvir. and if i wait, how long should i wait?

i have heard that people's natural killer cell function improves on ampligen, AV's, and ARV's, but i wonder how much it improves. for example, a very healthy person might have 75% on the LU30 test (normal 8 - 170) and a person with CFS might have 2%. i have heard that, with treatment, this can jump to 15 or 20%, but can it jump back to 75%? does anyone know? it might depend on how long we have been sick...

i have contacted a few people who took ampligen but they are unaware of their test results.

 

[Charles555nc]

I just read a study that shows that Valcyte fails miserably vs cmv. I tried some valcyte with the GcMAF because of what I read on the forums about KDM recemmending it with GcMAF, and potential virus reactivation. I remember now why I stopped taking it in the first place.

I was feeling about 50% better on GcMAF, but have relasped some gains past the 3rd week. I guess I will continue it for 3-4 months just to mark it off my list. I do seem to have a greater tolerance of NAC though, some vitamans I just couldnt tolerate before. Also I can not and could not keep using Low dose naltrexone, so that hasnt changed.

So I started researching vistide and dr peterson...

Edit: I couldnt do amipligen because I have a positive ANA test...avoid the hunter hopkins center at all costs.

Edit2: Famvir premanently stopped my night sweats after two weeks of treatment, didnt touch my other symptoms tho.

 

[*GG*]

(if a nice american man with insurance out there wants to marry someone with CFS for a while, please let me know LOL)

on second thought, you dont even have to be that nice

Hey, how you doing?

GG

 

[undcvr]

Edit: I couldnt do amipligen because I have a positive ANA test...avoid the hunter hopkins center at all costs.

Charles, if you have a positive ANA test doesn't that mean you have Lupus ? It opens up a whole new set of drugs for you many that docs won't prescribe for CFS. Its also a whole different ball game from CFS

 

[heapsreal]

I just read a study that shows that Valcyte fails miserably vs cmv. I tried some valcyte with the GcMAF because of what I read on the forums about KDM recemmending it with GcMAF, and potential virus reactivation. I remember now why I stopped taking it in the first place.

I was feeling about 50% better on GcMAF, but have relasped some gains past the 3rd week. I guess I will continue it for 3-4 months just to mark it off my list. I do seem to have a greater tolerance of NAC though, some vitamans I just couldnt tolerate before. Also I can not and could not keep using Low dose naltrexone, so that hasnt changed.

So I started researching vistide and dr peterson...

Edit: I couldnt do amipligen because I have a positive ANA test...avoid the hunter hopkins center at all costs.

Edit2: Famvir premanently stopped my night sweats after two weeks of treatment, didnt touch my other symptoms tho.

Hi Charles, do u have a link to that study showing valcyte works poorly for cmv? I was under the impression that valcyte was indicated for cmv and is off label for hhv6.

cheers!!!

 

[undcvr]

Yea Charles, I agree with Heaps. If you came across this study, it was probably a recent one and because the CMV is a strain that has become resistant to Valcyte, otherwise Valcyte is the go to drug for all CMV cases.

 

[Charles555nc]

Valcyte fails miserablely vs cmv in liver transplant patients:
http://www.ncbi.nlm.nih.gov/pubmed/16213344

Also, Ive read Valcyte is more virus-static than virus killer.

Exciting news:
I just read an article explaining that Raltigravir works on a dna protein used by retroviruses and dna viruses like herpes viruses. But like you know, it doesnt penetrate the cns...
http://www.hivandhepatitis.com/recent/2010/1022_2010_e.html


Question for Daffodil:

Have you looked into foscarnet as an alternative to vistide for CMV infection? Perhaps it is easier/cheaper to obtain? Perhaps not.

Thanks for giving me a new lead to track down Daffodil, since it looks like GcMAF wont be the cure I was hoping for. I think having a positive ANA, just means I am "not typical" cfs.