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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Antiretroviral Trial

shannah

Senior Member
Messages
1,429
Interesting find Jenny! Like you said we don't know if it would actually make a difference to anything though. But it might make a good experiment for anyone willing to try.

Glutamine very rapidly intensifies pain level in me. Can't stand more than a couple of doses before it's through the roof. I've always wondered though if it's like other things that seem to be partially effective - that you get increased symptoms and inflammation before it gets better. Just never been able to hang in there for any length of time to see.
 
Messages
93
Hi Heapsreal and Cloud,

I'm positive for active HHV-6, EBV (now domant) active Lyme and CMV. I have been taking Famvir and Immunivor for three months and I'm totally convinced that they have been a miracle for me. I'm now able to work without having to take naps and the fatigue and brain fog has cleared.
(I also tried Valtrex with no improvement)

I have added Valcyte for the HHV-6 and CMV starting two weeks ago at 450mg daily for a week, to 900mg. and finally now to 1800mg daily which I will take for 21 additional days. So far blood work has been a okay, but the 1800mg is making me feel kind of lousy.

Any advice for treating for CMV my doctor and I would appreciate, Cloud, I like the idea of a conference
call to Dr Peterson and my doctor, but with their schedules, it may be impossible.

Kind Regards,

Roger
 

Daffodil

Senior Member
Messages
5,875
am seriously thinking about stopping AZT. feel like pressure on heart is increasing..chest discomfort, ache....very worried.

thing is..heart problems started after RAL...but that is not listed as a RAL side effect...so i guess i will try stopping AZT..but maybe i should try small dose of atenolol instead. i dont know what to do.

there is a lot of literature on how AZT can damage cardiac tissue..but can it happen this quickly?
 
C

Cloud

Guest
Re: Glutamine discussion,

It seems to me that anything that will keep the inflammatory Cytokines down without causing detrimental immune suppression or other untoward side effects, would be a good thing. I believe immune modulation/anti-inflammatories will be a primary aspect of Tx in the future.
 

grant107

Jean
Messages
92
Location
Ormond Beach, Fl
Daffodil, I have not started the arvs yet but I am concerned about the drugs causing cholesterol and triglyerides to increase. My cholesterol is already high. Have you had an increase?
 

Daffodil

Senior Member
Messages
5,875
grant...i get regular bloodwork: creatinine, uric acid, sodium, potassium, ALT, Alk. phosphatase, bilirubin, CBC......so i guess i dont know..?

i am not well. cardiac problems still bad. even walking around the apt. is difficult. also, feel feverish. have no idea whats going on.

still haven't stopped AZT
 

Daffodil

Senior Member
Messages
5,875
hi moon. thank you for asking. today has been very difficult indeed and i feel back to square 1. i oscillate between planning my suicide and trying to convince myself that this is temporary and perhaps i will improve later. still keep thinking about a way out but there is none.

started small dose of atenolol today without talking to doc..i had some at home. will maybe see doc this week. it helped my heart but seemed to make my fog worse..but that may be unrelated.

i was reading about FeLV....so it seems antivirals only help a little. and if this virus is like FeLV, then we will need something else....i dont know why researchers still want ARV trials if this virus is like FeLV....

sue
xoxo
 

Daffodil

Senior Member
Messages
5,875
what kind of human being can take this???? they still want to debate whether we have this virus....we are dying!!! and whats the future even if they do believe us? dimentia....this cancer, that cancer...being treated like a leper....lonliness..isolation...HAART....cardiac problems....muscle wasting...metabolic disorders....and thats AFTER all the decades of illness that we have already endured!!!

WHAT KIND OF HUMAN BEING CAN TAKE ALL THIS?????

WHY AM I HERE???????
 

citybug

Senior Member
Messages
538
Location
NY
I've been thinking maybe we're here to fight this. K. Bakers testimony today that got cut off said we feel like we are in the last 2 months of life all the time. No wonder we are desperate for treatment.
 

glenp

"and this too shall pass"
Messages
776
Location
Vancouver Canada suburbs
We got to keep going and fight for this - so it won't happen to those that follow- have to save them-- we cant let it go on and on

We can make a difference for those to come. Make our life worth it
 

Charles555nc

Senior Member
Messages
572
I had an appointment with Laura Black at the Hunter Hopkins center to apply for the ampligen study today.

Apparently, there was a mis communication and they thought I was a regular appointment, so she was gonna sell me on their supportive therapies of: pacing and rest. Thats right, 3 hours at 300$ an hour and the solution she suggested: constantly taking breaks and resting (o and take some vitamin c as well).

3 hours of dumb f**** questions like, what did you major in college? Where were you born? Why? "To treat the whole person". To me she was "running up the clock" with that touchy feely garbage. Its not like I dont already pace myself and rest my life away. I think she thought because she was a woman and a doctor I would just pay money for her stupid unhelpful/unoriginal spin on chronic fatigue syndrome. I really pissed her off with my, how is that relevant?, type questions and Im glad. To be honest Ive gotten a couple consultations from other chronic fatigue docs and they really dont have much to say except suggestions like, dont be stressed out, rest when you need to, and other dumb as hell common sense things.

If not for her helping me sign up for disability and getting applied for the ampligen study I would not have paid my bill and I wouldve tried my best to make her sensitive self cry. Doctors charging huge fees for sick ppl and giving them no answers- Im sure theres a special place in hell for ppl like that.

Only interesting thing she said was that she had been invited to the whitemore institute and that she was not impressed with their science-which she said they could not replicate reliably. She seemed especially cocky that they would fail, although she said she thinks CFS is definitely retrovirus related.

http://en.wikipedia.org/wiki/Feline_leukemia_virus#Approved_US_Treatment
Daffodil you mentitioned FeLV, do these two treatments in the above link warrant further investigation? Even though they are for cats...
 
C

Cloud

Guest
We got to keep going and fight for this - so it won't happen to those that follow- have to save them-- we cant let it go on and on

We can make a difference for those to come. Make our life worth it

Exactly! This is a huge part of what keeps me encouraged through the toughest times. I rarely doubt that we will overcome this thing in my lifetime...but at my very lowest, I can still hang onto the idea that our struggles are going to spare the same for many who follow. It would be really hard to see one of my kids get this. And if they did, I would hope their time spent in this hell could be minimized. What we do now, is an investment for our kids and all those who follow. I would not have volunteered for this pioneering position, but here it is. I guess we all have to use our own bag of tools for coping, but from a brother on this journey....big hugss for you Sue.
 

Daffodil

Senior Member
Messages
5,875
FeLV: both US and European treatments seem appealing to me!

cloud....how can this woman act to stupid towards CFS patients and at the same time believe there is retroviral involvement?
 

Daffodil

Senior Member
Messages
5,875
thanks for hugs. thing is, my life was really bad even before this disease. i think most people in the position i am in, have done themselves in already. i still don't really understand why i am not doing it. strength or cowardice...not sure which

now that harvard didnt find the virus using mikovits' methods, there will no clinical trial forthcoming. God knows how many years this will take