Antiretroviral Trial

[mojoey]

Nope never. Both HHV-6 and ebv titers were active but low, so he thought ampligen was more appropriate for me

 

[Daffodil]

thanks, joey. my ebv and hhv 6 titires are lowish too. ampligen would probably cost the same for me as vistide. wonder if i am making a mistake. only thing is, ampligen would require me to start all over with a new doctor, and travel to NYC twice a week. maybe i will do vistide for 6 months and see what happens.

may i ask what your ebv and hhv 6 titres are?

did you ever have a spinal tap with peterson?

thanks a lot
sue

 

[heapsreal]

daff keep going down the vistide line, like u say u will have to start again with a new doc which can be a hassle in its self and possibly keep ampligen up your sleeve. I could be wrong but it seems that some on vis are able to sustain a certain level of improvement where ampligen seem to make greater improvement but dont seem to sustain when off treatment, but i could be wrong. Also up your sleeve is the b cell depletion therapy too. Money aside, vis isnt your final option and maybe more treatments to come from all the new research in cfs.

good luck,
cheers!!!

 

[Daffodil]

thanks so much for the pep talk, heap. you are a wonderful friend

i just dont want to have to try so many treatments that my mom loses her condo and we end up destitute!

sue
oxox

 

[mojoey]

I recall your titers being much higher than mine. My highest ever was 1:160. Ebv and hhv6 are both 1:80 with focus labs. I also had low level coxsackie and mycoplasma. Never did spinal tap (no idea why not)

 

[Daffodil]

hi joey. thanks. actually, my hhv 6 titres were almsot always 1:160 or 1:320...they were 1:640 only once. my ebv was rarely elevated with lerner. i had them tested before too many times, and i think they were the same as yours.

the way i figure it, ampligen is working on the CFS virus (retrovirus or whatever it is) plus the other awakened viruses. so, since i have already had improvement with the HIV meds, those meds must have worked on the CFS virus...and my CNS infection is likely a herpes virus....so thats why i want vistide.

i realize i am making a LOT of assumptions with my reasoning lol

 

[Daffodil]

hi all. i just received some test results from my NYC trip. my doc sent my blood to MDL for HHV6 antibody testing. negative is <0.75. if i am reading this right, looks like my IgG is 14.27. dont remember it ever being quite that high before, but its always been tested at labs where the results are given as a ratio.

i also have high mycoplasma pneumoniae IgG antibodies as usual (2.59 with normal being <0.91 - Quest labs). looks like he tested CD19+ and other lymphocytes. seems to indicate inflammation and it also looks like my NK cells are still low. i cant really understand these results. i will speak to my doc on monday.

i'm worried that my NK cell function will never be even close to healthy again. i have asked a few docs and no one knows yet, if they can recover to normal/healthy levels.

i'm waiting for my cystatin C resutls. i believe this is a kindey function test. hope its OK. Mary Schweiter couldnt take Vistide. her liver enzymes rose sky-high after the 3rd dose. ugh. i need to be able to take that drug!

if all goes well, looks like i will begin treatment on August 23rd or 24th.

thanks for reading
sue
xoxo

 

[Daffodil]

have noticed in the last few days, less energy and some chest pressure. my NYC doc noticed increased heart rate. still on atenolol. need long nap in the middle of the day lately and cannot do much. small downturn.

 

[heapsreal]

Daff, you have done abx for myco in the past? Cant remember if it helped u or not.
cheers!!!

 

[Daffodil]

hi heap! yes, i have tried abx...no herx, no nothing.

xoxoxo

 

[Charles555nc]

Copy letter for letter of my "positive" ana test
from hunter hopkins:


--------------------------------------------------------------------------
Antinuclear Antibodies Direct
Ana Direct Positive Negative
Anti-dsDNA Antibodies
Anti-DNA (DS) Ab Qn <1 uIU/ML 0-9

Negative <5
Equivocal 5-9
Postive >9
-----------------------------------------------------------------------------

I dont know what to make of it.

Edit: Wow posting messes with spaces and formatting...

 

[Daffodil]

hi charles..i cant help with this, either. anyone out there know what this means?

 

[Charles555nc]

I showed the test results to my father, an internist, and he didnt know what to make of them either.

I have an appointment with a rheumatologist, september 1st.

I feel really really bad tho...i keep calling and seeing if there are any cancelations. I get really worried I might have to go to the emergency room.

 

[Daffodil]

charles..im really sorry to hear that. i have been there many many times..for years. it is not pleasant. i forgot..where do you live?

sorry...fog is very bad

 

[Charles555nc]

Im in winston salem, north carolina, in the US of A.

I got two doc appointments- rheumatolagist for auto immune testing and chronic fatigue doc for requesting herpes virus testing.

 

[Daffodil]

ohhh you are near duke and cheney. interesting!

wonder if you can ask at WPI, whether they know of any docs in your area who might be open minded re: xmrv...

 

[Daffodil]

well get THIS. i went to NYC and had some tests done, which were ordered by my doctor there. so there really weren't that many tests - around 8 - and he uses this lab that either does the tests in-house, or sends the blood away to various labs around the country. so, my bill comes to $2612. i am paying out-of-pocket so i paid it and then had my blood drawn.

so a few days ago, my mother recently asks me to get an itemized list of charges from the lab, for income tax purposes. turns out the lab had over-charged me by hundreds of dollars!!

they just threw in some extra orders on my statement, that were NEVER MADE!!!

now..i KNOW this sort of thing is common practice in the US...over-charging insurance companies by many thousands and getting re-imbursed only some of it, etc etc...but to do that to someone who has traveled to another country, saved their pennies to get these tests.....someone who is desperate and ill....W T F is THAT!!?? have they NO ethics at ALL!???

i have no problem at all with my NY doctor - he is trying to save my life, afterall, and i know his charges going in - but that lab makes me sick.

i have been fuming over this all day. it took days of calls and pestering to get some of the money refunded, with no explanations. my stress level is through the roof over this...dealing with uncooperative people over the phone really makes my head/fog worse. i wonder how much they over-charged me when i went to them once before in 2007 and paid them several thousands.

no wonder the US healthcare system is so screwed up. its just everyone trying to steal as much as they can from everyone else!!! what a RACKET!!

 

[liquid sky]

It is common practice in the US to charge private paying customers much more than insurance companies for the same tests. They should not charge for tests not done obviously. I learned a long time ago to watch each bill and make sure it is itemized. Labs try to make up for non-paying customers by charging ones that pay more.

Sounds like you caught them in some outright fraud.

 

[Charles555nc]

When I went to the hunter hopkins center, the secretary lied about how much my tests would cost until after they were done (and I almost had a heart attack) and my 2 hour meeting with the female Doctor was her rambling about what we dont know about chronic fatigue syndrome, reading from a binder, and then quoting that one study that says sick people should pace themselves.

Gotta believe hell is made for such people.

 

[Daffodil]

i wish there was some way to get some of these people audited. wasn't quest labs just ordered to pay like 241M because of a lawsuit contending that they had overbilled medicare? ha! why dont they sue every lab? Labcorp paid 49M for the same thing i think.