Antiretroviral Trial

[mojoey]

hey fancymyblood,

daffodil has answered this question ad nauseum this thread, so i'll try to spare her answering this for the 50th time. She has a level of conviction..she's done the harsh anti-herpes-viral treatments to little avail and has a classic immunolgoical profile, so she thinks all signs are pointing at a retrovirus.

i'm glad things are looking up again daffodil

 

[omerbasket]

Sue, a couple of things:
First, I wonder - have you performed any tests after a significant times on the drugs, that you can compare with the same tests that you have done before taking the drugs? It can give you a clue as to if the drugs are working (and not yet showing it clearly clinically) or not.
Second, if you would like to take 3 drugs instead of two, you might consider taking adefovir, which had been shown by a study to be effective in vitro against XMRV.

 

[Daffodil]

omer..thanks. i am thinking about adefovir. the only biomarker clue i have that the meds have helped, is that my elastase has normalized. it was very very high before. you can check this thread for the tests i have done..i always list the results.

sue
xxo

 

[alice1]

This is such great news Sue.So happy to see you right that you feel GOOD.
May it only continue.
xo
al

 

[ukxmrv]

Hope so as well, Sue. Keep us posted please. Feel like I am sharing this journey with you and I worry about how you are getting on

 

[Daffodil]

thanks so much, guys. alice..sorry i havent kept in touch...will call soon

uk....thank you. i feel very hopeful now. wish they knew a little more about whether resistance can develop..will do anything to keep from going back to that hell.

-S

 

[Daffodil]

hi all. still doing OK. pushed myself much too hard today going out and running errands. became very overheated and tired.

i was thinking of re-starting azt but at 1/2 dose (300 mg) so i asked my ID doc. he advised me not to, as a sub-otpimal dose could create resistance in the area the azt targets (or something like that).

2 doctors have so far advised against adefovir, saying it is similar to tenofovir but less potent...so there wouldn't be much point in it.

my liver enzymes are always elevated now, though not by too much. i am very concerned about this. i know i have a slightly fatty liver now. if my enzymes keep rising, and i want to avoid liver damage, i will have to stop the drugs - which, of course, is not an option.

i expressed my concern regarding raltegravir and tenofovir not getting into the CNS in enough amounts but he did not seem concerned about that.

i was hoping to have more treatment options in the near future but i think it might take a very long time.

anyway, if nothing else, my antiretroviral treatment is proving to me that ARV's will be the key to our recovery.

sue
xoxo

 

[Mala]

I'm very glad to read your posts Sue. You are an inspiration to me.

 

[Daffodil]

aww thanks mala. that makes me feel good.

i am feeling a little bit of a decline today....i did A LOT yesterday. i know this is up and down so i am trying not let it get to me (but it still does lol)

also, its different this time around cuz i am not on the azt...

love
sue

 

[heapsreal]

hi sue,
you seem to be alot better off azt, i think you should hold off and it will probably help your liver also.
Now!, did u ever take that NAC like i told u too!!!? It will fix that liver up, atleast protect it from the drugs your taking.
We should be use to the ups and downs but i think the ups give us so much hope and the downs are sort of rubbing salt into the wound, i hate the downs.
thinking of you,
cheers!!!

 

[Daffodil]

hi heap! no hehe i forgot to order the NAC. i am so tried of taking horse pills!! but i will get it. i take something called Liver Longer..recommended to me by 2 docs...but i dont think it is doing much....

thanks

love
sue

 

[Daffodil]

hi all. still doing OK.... i think this might work!

 

[Berthe]

Hi Sue,

Glad you are feeling better. What is this liver longer thing?

Love,
Berthe

http://www.onwilliglichaam.blogspot.com

 

[grant107]

Sue, I read that adefovir combined with tenofovir will increase tenofovir and could cause too much tenofovir in the body.

 

[illsince1977]

hi all. still doing OK.... i think this might work!

Wow, this is amazing. I'd jump up and down and do a dance if I could! :victory::Sign Good Job:
I'm so happy you're having some good days for a change!

 

[Daffodil]

hi berthe....Liver Longer is a supplement you can purchase. i think it increases bile production or something...its supposed to help protect the liver. i dont know if it works but some bodybuilders take it..i assume because they take steroids...?

grant..thanks! i do not plan on adding adefovir.

sue
xoxox

 

[katieann]

Hi Sue,

Can you summarize the ARV's you are currently taking, with dose? I was up to page 6 when I figured you could link me to the most current info you have provided here somewhere...

~ k

 

[Charles555nc]

2nd appointment with Dr Laura Black at Hunter Hopkins Center-who still talks/acts like a spoiled 12 year old. Example: She dropped a file and yelled out : "I feel like such a RETARD". This is after I told her I worked with special needs children in my last job.

She promised to help me with my disability claim by doing a tilt table test and a bike exam. Secretary lied about the bike exam cost, was charged 900 for that test alone. Pasted out during the tilt table test, orthostatic intolerance. Had a blood pressure reading for 170/120 for the bike exercise test with the loud nurses taking my blood pressure every couple mins then not telling each other the results, so when the other nurse came back into the room they asked/yelled "WHATS YOUR BLOOD PRESSURE". So now Dr. Black wants me to see a cardiologist before I can try ampligen. Another possible problem with me getting ampligen: I had a positive ANA (anti nuclear antibody) reading, now they are doing the more accurate/reliable test to see if this is true. If I test positive for ANA again then I wont be eligible for the ampligen "study".

Also frustrating: these old women who act like little girls dont even let me finish a sentence before they interrupt and act offended when I ask direct questions. They also just walk away sometimes when Im in the middle of talking and someone calls them.

I hate these people, wish they would burn in hell for the disrespect/overcharging they have shown me, and would have nothing to do with them except for ampligen and their help with my disability claim. Now it seems they may not even be helping me with EITHER ONE, since my bike test and tilt table test results are "non standard".

I got some rest and my chest around my heart area seems sore today.

Can anyone PLEASE PLEASE PLEASE, give me the name of a doctor who will reliably prescribe anti retrovirals for chronic fatigue syndrome? I will travel long distances if I have to...charlesbeutt@gmail.com

Im thinking of getting a free hiv test and hoping for a false positive so I can try the retrovirals...probably sounds pretty stupid.

 

[Daffodil]

thanks guys. charles..i have sent you a message.

thanks susan

kati..i am on Raltegravir 400 mg twice a day and Tenofovir 300 mg once a day. I was on AZT 300 mg twice a day but i developed too many cardiac issues and had to stop it a few weeks ago.

i am actually not doing too well right now but we are going to have some renovations done (we had put this off for years due to my illness but i had to do it now...sick of living in a sty). i have pushed myself too hard choosing flooring. also, my mom is having a health issue, which is causing some stress..... so it will likely be a few weeks until i can rest properly.

there is also a small chance i have declined due to stopping AZT, but am guessing this is not the case.

it is clear that i need almost just as much rest as before, in order to keep the improvements moving forward.

dr. lerner always told me not to exert myself at all until i was 75 - 80% better and he was right. improvement is very fragile for me...but i have been sick a very long time and was a severe case when i began treatment.

sue
xoxo

 

[eric_s]

I got some rest and my chest around my heart area seems sore today.

That's "interesting", Charles. I sometimes have this too, especially today. I have no idea what it is. I have been travelling the last 2 days and it was quite tough, physically. Too much walking around and carrying luggage. Even though for a healthy person, it would not be much. Now this morning, since waking up, i'm having this feeling in the chest area. And it happened before, when pushing myself too hard while travelling. When i'm at home i never let things go so far, i always get enough rest and don't do so much physical activity for extended periods of time, so i don't get it then.
And sorry, Daffodil, for getting off topic in this thread.