Antiretroviral Trial

[Cloud]

Dr Peterson uses the NKC9 Lytic Unit 30% test (VIP) which tests NK cell function/effectiveness.

 

[Rrrr]

i see my doctor tomorrow and plan to discuss anti retrovirals. and hope to get the pre-treatment labs/blood work done tomorrow.

does anyone have a good list of all the labs/blood work i should be requesting from my doctor?

AND, DOES VIP TAKE MEDICARE? (i'll calll to ask)

best,
rrrr

 

[Daffodil]

Rrrr...i think you can get a complete panel....CMCP or something its called?...at VIP

sue
xoxo

 

[Rrrr]

thanks, sue. and they do take medicare. which covers 80% of the cost of the tests.

 

[Sushi]

thanks, sue. and they do take medicare. which covers 80% of the cost of the tests.

Does this mean that Medicare covers 80% of the XMRV tests too?

Sushi

 

[Rrrr]

last i talked to them (pre-assay test), medicare only covered $51 of the $400 test. things may be diff now....?

 

[Sushi]

I called today about the anti-body assay--they said may be available in 2 weeks, but didn't know the price.

Sushi

 

[Daffodil]

hi all. just wanted to report that the brain inflammation feels markedly less today. fatigue still intense. i am starting to sleep nights now but also sleep 1/2 the day. experiencing some mild asthma (this hasn't acted up in ages). nausea has been awful and has been affecting sleep and diet. today was a little better. may start anti-nausea med; will talk to doc.

sue
xoxo

 

[grant107]

Rrrr, I had the test done in Feb and asked the costs be paid by Medicare. I, also, gave my credit card number, in case it was not covered. So far my credit card has not been charged but I guess it could still happen.
Jean

 

[cfs since 1998]

hi all. just wanted to report that the brain inflammation feels markedly less today. fatigue still intense. i am starting to sleep nights now but also sleep 1/2 the day. experiencing some mild asthma (this hasn't acted up in ages). nausea has been awful and has been affecting sleep and diet. today was a little better. may start anti-nausea med; will talk to doc.

Thanks for the update. How is your tachycardia?

I think AZT causes nausea. Tenofovir also causes nausea. Did you end up starting tenofovir too?

 

[citybug]

Is elastase a marker of inflammation? Those changes sound promising.
Cheney says his patients start sleeping a lot with stem cells
About the mulvs I just saw some scattered mentions here and watched a video that was taken down. I think it's an area where there will be more work later.

 

[Daffodil]

cfs since.....yes i have been on tenofovir for 1 1/2 week now and it has made a difference. the nausea is definitely a problem but over the last 2 days, has lessened a little. the tachycardia is gone (i haven't actually been checking but i don't feel weird anymore).

kdp...yes elastase is a marker of inflammation.


sue
xoxox

 

[energyoverload]

sue,

i'm happy to hear your labs are improving! sorry to go off topic but have you tried methotrexate or rituximab infusions, dr klimas says rituximab maybe quite useful...i'm so desperate to get some sort of improvement - but i'm XMRV negative by culture :S i could go ARV route possibly, it seems like they are starting to get some slow improvements, but it will take a while to get well of course.

thanks, stay strong

jake

 

[Daffodil]

hi energy....i cannot do anything IV...they wont do it here and i cannot afford it in the states. i have been negative for XMRV on 3 tests: PCR, culture, and the old serology, but i was so sick i didn't care.

today, i felt the return of some energy.

definitely slow improvement but a world of difference from the way i was (which was hell).

sue
xoxo

 

[rsagall]

NeedyMeds

All the information on pharmaceutical patient assistance programs plus hundreds of other programs is available for free at www.needymeds.org. Each workday over 13,000 people visit our site. We have all the applications on the website.

Our information is ease to access, updated regularly, and free. We gather no information about our users.

You don't have to pay to apply to these programs. Most are easy to apply to and respond quickly.

We also offer a free drug discount card. No registration is required and anyone is eligible to use it. The average savings is 50% with occasional savings of up to 80% or even more.

Rich Sagall, MD
President
NeedyMeds, Inc.
P.O. Box 219
Gloucester, MA 01931
richsagall@needymeds.org
www.needymeds.org

 

[jimbob]

I can attest to needymeds, it worked for me. It was a simple process and was completed pretty quickly. Thank You rsagall. Jim

 

[Daffodil]

continuing to improve slowly. have a little more energy, a little more brown power. there is no question the medicines are working.

sue
xoxo

 

[Tembo]

Thats so exciting Sue - Im so happy to hear that. I hope you go onwards and upwards from here!

 

[Tembo]

How is the nausea going Sue?:Retro smile:

 

[gu3vara]

Great news Sue, seems like the rough start is finished and it's finally paying off