Antiretroviral Trial

[pinkytuscadaro]

Hello Daff,
I had a hysterectomy because I have the BRCA mutation that causes breast and ovarian cancer.
After the surgery I was very low in testosterone and had my np add testosterone to my bioidentical hormone replacement.
I did not react well to the testosterone and so the dose was lowered. I am now on low dose testosterone along with progesterone and estrogen.
I do not react well to DHEA either. My DHEA level has always been high but dropped to almost 0 after the hysterectomy.
I guess my question is do you think the testoserone is bad to supplement at low levels if one has xmrv?
Of course they say we need a little for energy, lobido, muscles....etc
That is why I am taking it.
Pinky

 

[Charles555nc]

Hey Daffodil,

Ive still been taking the tenovir, the last dose I took caused my entire body to be in pain at a 9 out of 10 scale for the past day. It is slowly subsiding but I was wondering if you have experienced anything like this?

I felt like I got beaten half to death and left on the side of the road. Every muscle and joint ached to the point I wanted to scream constantly.

Could this be a side effect of the medication? Immune reconstitution syndrome? Herxheimer reaction? When should I take another dose?

It would be nice to get your input.

 

[Daffodil]

alice..thank you for your kind wishes and support how are you these days?

pinky..i am afraid i have no idea about hormone replacement at all, but perhaps someone else can chime in. there is a fellow named gerwyn who is/was a microbiologist and seems to know a lot. he posts here: http://www.mecfsforums.com/index.php

perhaps you can ask him?

charles....i didnt know you had begun ARV's...or maybe i just forgot. i did not have any bad reaction to tenofovir but i added that after RAL and AZT. i think i felt a little better after i added it. how long have you been on tenofovir? sorry...fog.

------

wanted to mention that i am again decreasing my AZT to 400. even at 500 this stupid chest pain and malaise is too much!! i sleep the entire day and wake up feeling like someone is standing on my chest! wtf.

i stopped AZT before and think i got worse...the CFS is always better on the drug, especially the fog...but i swear i am going to end up with a heart attack.

i guess i will see if i backtrack on the 400. i wish there were still some docs who replied to my emails. my doctor doesnt seem too worried about my heart and i have no idea why...he is a very prominent doctor.

i keep asking him to just call someone who knows about MLV's..there are people who might be able to guess at resistance issues, people who have been studying MLV's..they would talk to him i am sure....but i dont think he is going to call. :-/

i heard dr. brewer starts with just 2 drugs, RAL and TDF....

sue

 

[Daffodil]

ok so its been 1 1/2 days since i have been on 400 AZT and i can feel my fog returning.

 

[ukxmrv]

Oh no Daff. Hard to find the rigth dose there. Really appreciate your posting the successes, failures and everthing inbetween.

 

[Daffodil]

hi all. just wanted to let you all know that after reducing the AZT to 400 mg, i can feel my brain getting fogged up a lot again...like i can actually feel the infection spreading. i am also feeling hot and getting more night sweats. and my lymph nodes hurt a little and feel fuller.

before, on 600 mg, i had begun reading books again - albeit light reading - but it felt so wonderful. it was like my brain was slowly reverting back to 18 yrs ago.

this is really toruture, to go back to being a zombie again. i dont know where to turn. i have emailed everyone i can think of but no one has any suggestions.

 

[heapsreal]

why dont u alternate your doses of azt from 400mg for 2 days to 600mg for 2 days etc. nothing to lose but your marbles, lol. and we have all lost them, so they think???

 

[Daffodil]

oh heap.....i wish i could....but i will just get resistant in a few months if i do that, i am sure.

maybe elvitegravir or apricatabine will have some better CNS penetration? BLAHHH.

what a mess for me. its DEEP in my BRAIN

with 600 mg AZT...I WAS STARTING TO READ BOOKS AGAIN!!!!!!

kill me.

 

[TheMoonIsBlue]

Hi Daffodil

This is an older article, (about AZT in magnesium deficient mice)

http://www.ncbi.nlm.nih.gov/pubmed/15371632

Could you ask to have your magnesium level tested? Also if someone could chime in, is there a blood test to determine a persons Carnitine level? (Acetyl-L-Carnitine)

Here are two articles about AZT and Carnitine:

http://www.ncbi.nlm.nih.gov/pubmed/18504416

http://www.ncbi.nlm.nih.gov/pubmed/12215207

I just don't know what is safe to take with ARV's so would definitely ask a doctor.

Does anyone know if ARV's induce deficiencies in any particular vitamins and minerals? So many medications do deplete specific ones (i.e. I think prescription NSAIDS deplete Folate, Birth control pills deplete B-Vitamins, etc.)

 

[Daffodil]

hi moon. i read that vitamin E, L-carnitine, L-Taurine, hawthorne extract, Corvalen, etc..might help the heart and some of these are supposed to help while on AZT.

However, my chest pain is so severe on the drug and it even hurts to pick up a magazine for too long...i have to wonder if i am one of the rare people who develop congestive heart failure on this drug.

i am in the process of trying to get in to see a cardiologist but this will take several weeks. i am really at the end of my rope. i keep upping the AZT dose when the brain inflammation becomes unbearable and then lowering it when my chest pain becomes unbearable.

i really am starting to think all the virus lives in my brain and i need massive dosage to get up there.

i'm really starting to believe i will end up dead before a new medicine is ready for us. sorry to be melodramatic :-/

 

[pinkytuscadaro]

Sue,
You are not being melodramatic; all of us who have been ill for a # of years feel the way you are expressing from time to time.
Things are changing for those with CfS/XMRV lets just believe together that we will get through this and in the not so distant future this illness will be treatable if not curable.
Love,
Lynny

 

[omerbasket]

I wonder: Are there any methods in order to take a drug which does not reach the brain very good and to make it rich the brain good?
I can think of two ways:
1) Would injecting it to the CSF do so? And would it not be fatal or very dangerous?
2) Perhaps put it right into the brain? I don't remember what was the patient's problem, but in Israel a patient came in to the ER in a very critical condition and he suffered from some problem in his brain. Normally it would have probably been the end of that patient, but the doctor was allowed to start an experimental treatment this time: As far as I remember, what he did was to take a known drug, which is taken oraly or by injection or something like that, but at this time he just injected it threw a catheter to the patient's brain (the patient was obviously anaesthetized). As far as I remember, that worked and the patient's life were saved.

Now, I guess that no doctor would do that here - but at least as something to consider for studies - are these two suggestions make any sense, because of the problem to cure the infection inside the brain?

 

[Daffodil]

thanks pinky. omer..i have heard of that too but as you said, no one would do anything like that for me.

honestly, im starting to wonder whats wrong in my brain aside from xmrv....very few seem to have fog this severe and they didnt find much xmrv in the brain of the monkeys. the 2 researchers i have contacted seem confused by my brain issues.

maybe my only hope is to try to stay alive until cmx157 becomes available and if i do have xmrv up there, that would do it.

 

[glenp]

I dont have it near as bad as you Daffodil but maybe minocycline would help you a little. I was able to add numbers again, moreless stop vaso restrictors and my soar head was much improved

glen

 

[omerbasket]

thanks pinky. omer..i have heard of that too but as you said, no one would do anything like that for me.

honestly, im starting to wonder whats wrong in my brain aside from xmrv....very few seem to have fog this severe and they didnt find much xmrv in the brain of the monkeys. the 2 researchers i have contacted seem confused by my brain issues.

maybe my only hope is to try to stay alive until cmx157 becomes available and if i do have xmrv up there, that would do it.

Sue, did you have other tests for your brain, like neurological tests and CT and MRI? Perhaps even things like fMRI, SPECT and PET scan? Perhaps these tests might help understand what's the problem here.

 

[leaves]

Id you try leaving out gluten, dairy and other food allergens?

 

[katieann]

hi und. i am very glad to hear you have found some relief. my antibodies to the herpes viruses were never very high at all. in fact, they usually did not show activity...but i just didnt know what else to do.

i take some fancy liquid fish oils...magnesium when i remember...and a liver supplement. i find that if i add any more stuff, i just cannot keep up cuz of my fog.

i do have other things i should take but i keep waiting to get some more energy.

sue
xoxox

Sue, have you been tested for teh HTLV's?

 

[Daffodil]

hi leaves..yes i have tried that and just got worse.

omer..i had an MRI a few yrs ago..normal except for 1 bright spot..and SPECT several years ago was normal too. it wasn't a functional SPECT though...just a regular one.

my recent IL-8 was about 1900 with normal <14...and that is common in neurodegenerative diseases...

i guess it is likely i have a retrovirus up there, since the AZT helps. as in HIV, some people are unlucky enough to get AIDS dementia or HIV-related cognitive problems, while some have none....so i probably just have a lot more virus in my brain despite what the researchers say...and i need CNS penetration.

i wish i had some other options as to what to try.

 

[pinkytuscadaro]

Daff,
I was wondering if you took the RV's with activated b6 if that would help them to cross the BBB?
I know when you take singular aminos they say to take them with b6 to make sure that it crosses.
Also Alpha lipoic acid crosses the BBB, maybe taking the RV's with ALA in a low dose would help?
I say low dose because I took ALA every 4 hours the other day(I am also on RV's) per Andrew Cutlers instructions on mercury detox and I had a headache for 2 days.
Also do you think you have any mercury issues?
Wishing you a Happy Valentines Angel.
Pinky

 

[Charles555nc]

Hey daffodil,

What is your opinion on Rituximab? Its being studied for use in chronic fatigue syndrome, although the study still doesnt seem published. I think if I had it available I might be scared to try it because of the risk of Progressive Multifocal Leukoencephalopathy...although I think thats more related to people who have other main diseases.

"Bennett reports on 57 cases from 1997 to 2008 in which patients with anemia, rheumatoid arthritis or lymphoma developed the fatal brain disease after taking rituximab. They died an average of two months after being diagnosed. The study was published in the May 14 issue of the journal Blood."

57 people isnt alot for such a widely used drug though. Scary as hell, to have the potential to destroy white matter.

Whats your take on it, Daff?