Antiretroviral Trial

[Daffodil]

thanks. i have always been negative by PCR, for everything i have ever tested for. as for HHV 6, i have been tested several times - not only antibodies and PCR, but i did the $500 culture antigenemia test too - all negative. i am just praying it might be lurking in my CNS...but who the heck knows ....my IgG antibodies have been usually 1:320...many times lower and one time, 1:640. thats all i got. and 3 yrs of valcyte+valtrex didnt help at all. so thats why i cannot be so conifdent that vistide will help. as of now, i wouldnt bet on it.

maybe i will know more in a few weeks...

monotya uses IFA, not ELISA.

 

[taniaaust1]

tania...there is something called "anemia of inflammation"

oh I didnt know that. Thanks Daffodil.

Thanks too for your comment Charles (I dont have sugar due to having issues with carbs and hyperinsulinemia and actually have been told I have to eat meat 3times daily due to it helps to balance insulin)

Daffodil. I hope you dont ever delete this thread. anyone who trials any new treatments and its recorded is valuable knowledge out there whether it worked or didnt much.

 

[taniaaust1]

hi und. well ARUP labs does interferon gamma but quest wont send it there and they wont take blood from canada

i was just reading that HHV6 causes decreased IgG3 and HIV causes elevated IgG3.....so maybe if its decreased, i could have active herpes virus? i dont know....sounds like a waste of money i guess. most CFS patients have decreased IgG3 anyway so what does that mean if they have a retrovorus?

I wish they did some studies on HHV6A and ME/CFS... there seems to be so little info on that and that was highly suspect.

 

[PokerPlayer]

Hey all,

Where do you get all these tests performed? And how do you get a doctor to perform them? Anybody know of anyone on the west coast of the U.S. that could do all these immune system tests? I would love to know things like my NK cell and HHV6 tests would look like

 

[mellster]

Hey PP,

Most docs can do these tests as standard labs like LabCorp or Quest provide them - some labs are better than others but you should be able to go to any doc on the west coast and ask them to write you a lab slip for these tests. You will likely then go to a lab near you and have blood drawn and your doc gets the results faxed/mailed. Some labs let you retrieve the results online if you register with them.

 

[Daffodil]

hi all. so as you know, i have been on raltegravir and azt while on vistide. since in thailand, they use 200 mg azt BID for people who are 60 kg or less, and i am 63.5 kg, i decided, as my doctor suggested, to just take 200 mg BID. but 2 days ago, i thought i would see what would happen if i increase it.

as you might remember, when i tried AZT in early 2010, 200 mg BID did nothing but 300 mg BID started causing tachycardia and these weird headaches, after which my brain begain to clear for the first time in 19 yrs. i was euphoric. but my chest pain became so bad, i couldnt take that dose and went back to 200 mg, after which my fog returned. i went back and forth for several months until nothing happened even with the higher dose.

well 2 days ago, i decided to try the 300 mg BID dose again and, as before, i am starting to feel a weird headache coming on again.

what does this all mean? i have NO idea. none of the doctors i have spoken to have a clue either. of course, this only serves to strengthen my fear that i have a retrovirus in my brain that needs loads of AZT cuz the other meds arent touching it.

its the only explanation that makes sense to me but there is nothing i can do!

i need some real answers already

 

[undcvr]

Daff how is your daily functioning capacity ? How are you able to be active at all day to day without being fatigued later ?

 

[Daffodil]

hi und. i am not active at all. i need at least 1 nap a day and the most i can do on an average day is make a meal and maybe do a load of laundry. there are some days i can do a little more and some days less.

for a while there, i thought i was recovering but declined some....BUT i am still a lot better than i was before the ARV's. at that time, i would feel like i was dying after getting out of bed to go to the bathroom. i'm sure they saved my life.

 

[ukxmrv]

I'm really pleased that you have had some benefit from the ARV's Daffodil.

Really gives me some hope!

You have been so brave to get this far. That student (?) researcher on Dr Jamie's thread doesn't know what it is like to be so disabled with shrinking options on how to treat a disease.

I used to belong to a group for another illness. There were doctors and researchers on that one who were always the most keen to try experimental treatments. I saw firsthand how they acted.

 

[Charles555nc]

Hey Daffodil,

My NK cell numbers panel came back normal, is there a place that offers natural killer cell activity test? My doctor said there used to be a place called immunoscience that did a test like that but got shut down by the fda.

Really want to try alpha interferon, but I got to prove a nk cell deficiency of some sort before he will prescribe it. I turned out positive for coxsakie virus, which the doctor who treats cfs patients with alpha interferon says its usually there with cfs, and he uses interferons to treat both. Cosakie virus is an entero virus I believe...

My Iron was high at 153, but my docotor refused to consider doing anything about it until it was at least 200. I had wanted to try Exjade.

 

[Daffodil]

hi charles and uk

my azt headache stopped yesterday and nothing came of it.

charles..yes you can get the NK cell functional assay (LU30) at either UNVEX or Quest Labs. Make sure you indicate that the blood has to be sent to the Nichols Institute on your Quest requisition or they will probably mess it up, like they did once with mine.

i'm off to niagara tomorrow for 5h vistide infusion. feeling like absolute hell right now. decided to go ahead and get bloodwork on thursday at quest: nk cell function, t cell gene rearragment, hhv 6 IgG antbodies, and TNF-a. lets see what they say.

the phlebotomist at the lab who took my blood for routine bloodwork today was surprised that my blood was unsually thick and very hard to draw. she asked me if i felt particularly ill. wonder what that means!

i was just reading about how SIV is found in brain tissue of monkeys despite there being undetectable virus in spinal fluid or blood. at a presentation, dr. mikovits made a comment about how she thinks the brain tissue has the retrovirus even though dr. natelson's spinal fluid samples didnt have any XMRV.

and there is something about CD8+ lymphocytes that carry the virus to the brain...and they found high concentration of these in the brains of SIV-chronically infected moneys too...and the monkeys had behavioral problems and didnt do as well on tasks etc

lol guess we are out of luck if we need brain biopsies to figure out whats wrong with us!

 

[Charles555nc]

Sigh...

So do I tell my doctor the name (NK cell funtional assay) and the code (LU30) or do I have to contact Quest Labs?

Nichols Institute, got it. I will tell quest when the blood is drawn.

He might be prescribing me Nexavir since he couldnt do much else in our phone conversation today.

Daff,

Should I send my doctor this info...http://www.nicholsinstitute.com/TestDetail.aspx?TestID=2742

Quest diagnostics at nicols institute...but can I get the blood drawn anywhere as long as I have the codes? Or do I have to go to quest labs for quest diagnostics...

I hate that me and my doctor dont know the exact protocol for that labwork.

 

[undcvr]

hi charles and uk


the phlebotomist at the lab who took my blood for routine bloodwork today was surprised that my blood was unsually thick and very hard to draw. she asked me if i felt particularly ill. wonder what that means!

Hey Daff if your blood is very thick and hard to draw blood from, it is in a state of hypercoagulation. This is a very very dangerous state to be in, it can lead to all sorts of complications. You think of going on some kind of blood thinner. I know many pple with this condition are on Heparin shots. That really helps. Like I have said elseplace on this forum I took Asprin at high doses to get rid of that condition. It is very related to pathogens too and the condition/symptom has to be treated directly to relieve the illness. If not asprin then some kind of enzyme therapy.

When your blood is thick like that, you are basically in the midst of a relapse, you cannot be feeling very well or energetic because your heart is having trouble pumping all this thick blood through your system.

Please consider that.

 

[Daffodil]

hi charles. well my doctor is a world famous doctor and still got the codes wrong lol. i was not happy.

i think you can go to any Quest lab blood collection centre and on the requisition, make sure it says SEND TO NICHOLS INSTITUTE and the number 34184X...and the name "NK cell functional assay". with all that info, i dont see how they can mess it up. the doctor should have Quest Diagnostics requisitons in his office. that would be the simplest way.

 

[Daffodil]

und...thanks my blood has never been thick intil today. in 2007, i had some sort of test for that (fibrin??). if it continues, i will certainly talk to the doctor.. my phone appt is in november (at $150 for 10 min, i dont do it too often lol)

und,...do you wonder if maybe, since acyclovir and other herpes drugs do have SOME affect on HIV, that maybe thats why you need a very high dose of valcyte? maybe the drug is actually acting on your retrovirus!?? maybe you dont have too much retrovirus so you can get away with just valcyte??

hell i dont know. i have about 5% brain function - like a tiny tiny hole that is open up there - with which i can think. and all i do is ruminate on this...over and over and over.

i have such a deep sick feeling this is going to end so badly for me. i think dr. mikovits thinks the CD8+ lymphocytes carry the virus to the brain and then its get all in the tissues and is not even in the spinal fluid...and it just sits there causing all kinds of inflammation and neuronal death....and it just gets worse and worse. i can visualize it. i know this is what is happening to me. i deny it all the time and go to my stupid vistide appts but deep down, i know what it is. its not a herpes virus inside my head. i can feel it. other people dont have as much (or any) virus in their brains and can think perfectly - even write books - with CFS, but for me, its totally different.

ok sorry . i am really fked up right now. i am nasueaus sick and have to be up early, take a 2 hr bus, a cab, walk across the border for 1/2 mile, and get infused while i am sick as a dog but pretend i am happy and make small talk with the nurse, and then vomit all over the place...and for what?

o God..this has to be over soon. it just has to.

how can it be...a one second decision...ruins your whole life. your whole life would have been so different in every single way. a split second and suddenly a lifetime of hell. it is so unreal.

the other day i saw a couple walking with their dogs. they were happy...it was twilight and the neighborhood was charming...a homey area....and they were just together, walking home...talking to the neighbours...and i looked at them so longingly, like...OMG...what a FANTASY that life would be. but WTF...that would have been so EASY To have. not a fantasy but a certainty..just one of the many little things that bring joy to one's life...that i wouldnt even have given a second thought too...but now...its TOTALLY impossible. something so simple...so easy to attain.....ITS OVER!!!

now its nursing homes and cancer drugs and pills and pills and doctors and hospitals and trying to survive and crying and o God


i'm gonna regret this post in the AM

 

[jstefl]

Daffodil:

I suffered a pulmonary embolism three years ago. "Thick Blood" can be a very dangerous condition. I have been on Warfarin ever since. Once a month I get a INR test to see how things are going. I often have to adjust the dose of Warfarin one way or the other. The test is very simple to do, and if you have any concerns, I would strongly suggest that you ask for one.

My problems started with a pain in the kidney area that eventually moved to the chest. I went to my doctor when the pain started, and he missed it completely. I waited until things got really painful, and went to the emergency room in the middle of the night. They were able to fix things, but this a serious, potentially deadly condition.

John

 

[gu3vara]

Regarding the thick blood, I would ask a doctor considering the treatments you are already taking, I would be carefl about possible interactions. I took natokinase enzymes for thick blood and a couple weeks on it I had to decrease it cause my blood was flowing too much when I had any small cut, so it was really working. Omega3 in high dose would help to.

I would stay away from the rat poison warfarin is possible. You are already on some toxic meds...

It essential to have fluid blood to cure yourself imo.

 

[undcvr]

Daff no one really knows what it means too given the fact that 1. you have never experienced it before and 2. this is happening in the midst of your Vistide therapy but chances are it is more than meer coincidence.

It has happened to most pple with ME/CFS at one point or another of their illness/ recovery. The main thing it to Treat it. Treat the excessive fibrin and hypercoagulation.

Many pathogens have been known to throw up fibrin to evade the immune system, AVs and ABXs while you are on treatment. They hide from the treatment you are on making it less effective and even prolonging the treatment timeframe. It also puts your blood in a dangerous and unhealthy state and you don't ever want that.

There are even OTC treatments for it. Asprin or if you cannot tolerate it then Pancreatic enzymes that are enteric-coated. High doses of omega 3 ( EPA mainly ) will help too. I took high doses of asprin for over a year and found that it did help me.

Again you should really really treat this symptom.

 

[Sushi]

The lab the does the most sophisticated testing for coagulation problems is Hemex. They have a panel called ISAC (?) which is aimed at the kind of hypercoagulation often found in ME/CFS patients.

I took their test and was put on low molecular weight heparin injections for about 6 months followed by nattokinase which I still take.

"Thick" blood is a potentially serious condition and one that ought to be investigated as it can lead to serious stuff.

Or, maybe you were just dehydrated, but this is something to watch.

Best wishes for today, Daf.

Sushi

 

[Dan_USAAZ]

Curcumin is very good at thinning the blood. It is also purported to have other cardiovascular and anti-inflammatory benefits.