Antiretroviral Trial

[dannybex]

Sue -- here's a good page on Ehlers-Danlos, written by a woman who has recovered:

http://www.ctds.info/eds.html

and this page on diet changes that helped her:

http://www.ctds.info/ehlers_danlos_diet.html

 

[Daffodil]

thanks danny. i was reading that these degenerative disc changes are common in people with our disorders, perhaps something to do with our alignment being out of whack. putting pressure on the discs. maybe we are so tired we sit a certain way, walk a certain way or have lack of movement or something..?

oh well...i was excited that maybe i had found the real cause of my brain fog, but i guess not.

i will try to get an appt with a neurologist anyway. i just hate seeing a new doctor here in toronto...its usually the same story...they tell me CFS isnt real and i resist strangling them.

canada also has some sort of spinal surgeon crisis where you have to wait a year for surgery.

 

[Tristen]

Some years back there was a lot of info making the rounds about "Chiari Malformation" as a potential cause of me/cfs. But since your Foramen Magnum appears normal, that would be ruled out.

 

[Charles555nc]

Dont even get side tracked Daffodil, ...I had 0 herniated disks, then got sick and developed 3 in three differents areas, some of which move around or go away over the years. They get better when I get better, and I ve had alot of mris.

I really would not put any stock into someone getting cfs "cured" from herniated disk surgery. Its like people who just go on a "Special diet" and get cured. Makes you doubt that they had cfs in the first place.

In theory, herniated disk could press on nerves and blood vessels restricting blood flow to brain, and thereby producing nerve pain and brain fog, but thats not cfs related.

Any update on how the Vistide is making you feel?

 

[Daffodil]

hi charles....thanks

i think i may be a little worse today...yes...definitely a little worse in the neck/head area...

how are you doing?

sue
xoxo

 

[mellster]

Agree with Charles - due to the variety of symptoms in CFS/ME it is likely that you have to either take AVs/ARVs or arm/modulate your immune system with products. While there may be a few cases that resolved from tackling one single issue/organ I doubt that it is the case for 95% of CFS/ME.

 

[Daffodil]

thanks mell

 

[aquariusgirl]

sue

why not post yr spinal MRI results or whatever tehy are on on a forum for spinal/neurological problems.

aq

 

[Charles555nc]

In a moment of desperation, months ago, I order some BHT because its being researched for herpes viruses/aids. And it just arrived a week ago, I totally forgot (no surprise).

Idk if its placebo yet, but my rapidly worsening mental problems (brain pain, difficulty organizing thoughts, things not feeling real etc) seems to have improved a bit.

My Lab prescription showed up in the mail. But I dont see hhv6 or cmv on the test list. Gotta call Monday and ask again for those two tests.

I believe God is keeping me one inch from death for the past 2 or 3 years. Its scary living like this.

Edit: Also cut out the 2 diet sodas a day which were my only "desserts"

 

[Daffodil]

just wanted to say i am so glad for the commeraderie on this board, it is a lifeline for me. it is scary living like this, i agree.

there are now a few people who think they might be feeling worse several months after dropping AZT from the regimen, me included. since i started ARV treatment, i have suspected that AZT was doing the bulk of the work...so now i am really wondering if it isnt another retrovirus altogether that is causing the CFS.

but then again, there is someone doing well on just raltegravir and another person doing well just on tenofovir...

i'm starting to feel like, if i ever do get better, there won't be much time left or anything in my life left to enjoy...how will i even relate to anyone? everyone i know has spent the last 20 yrs evolving, building families...and i have been just dealing with this.

sorry to be depressing...but the science is just moving so slow, its ridiculous.

 

[Daffodil]

when i started the HIV drugs, i noticed that my head felt worse and my index finger, thumb, and big toe twitched a lot. i was worried this meant that the infection was spreading in my CNS (i had read that when HIV infects the CNS, the index finger and thumb twitch) but as it turns out, i think it signaled that the drugs were going to help me - that they were hitting an infection.

i am now experiencing the same thing with cidofovir.

i heard of one other patient who had to stop cidofovir after 6 weeks because of kidney and liver issues. so now i am always worried that i won't be able to finish the protocol. i have been nauseaus on and off since the day i did the infusion too....so that cant be a good sign. ugh...i hope to God i can stay on this drug.

i wish my doctor let me do the 2 L of saline after the cidofovir but he only wants me to do 1L before and 1L after. to compensate, i tried to drink a lot of fluids afterwards....but then ended up vomiting them all out. maybe i should insist on 2L. i was reading the vistide product info and it said if the patient can tolerate 2L , they should get 2L after the infusion. and i know peterson does 2L too...but my doc said he doesnt want me to get "over-hydrated"..??

cmx001 has fast track status by the FDA now, for other applications..so maybe it wont be that long before thats available...

 

[undcvr]

Daff if u want to drink lots of fluid and if u want it to stay dwn u cant just drink water, it has to be slightly saline, about 1/4 - 1/2 salt with every cup of water. It will pass thru the gut better and will be retained in the body.

Good luck.

 

[Daffodil]

thank you! und!!!!!

 

[heapsreal]

drink gatorade or some other type of electrolyte drink will help.
daff are u taking any sort of liver support like NAC etc?

cheers!!!

 

[Daffodil]

hi heap. no i am taking nothing but protandin...a glutahione thing...a good doc told me to take it. i guess i should find out what to take for the kidneys,..i am just too poor sick and weak to bother with anything to be honest. i can barely remember to take the meds i am taking now.

my fog is so bad i cant think straight. i was thinking the nausea is from the cidofovir but its probably from the AZT i just got back on. the AZT helped so i wont know till much later if its the AZT helping or the cidofovir, assuming i feel better and i can stay on the cidofovir.

dr. deckoff is starting to feel worse it says on her blog and she might go back on AZT. people are trying other drugs too like epivir..i think dr. chia is prescribing epivir. its all a shot in the dark!! ugh.

thanks for reading
sue

 

[heapsreal]

have to give cidov time, and go through the die off thing too. the waiting is a bugger, but keep the klono or valium on hand for symptoms, dont suffer if u can avoid it.

cheers!!!

 

[Daffodil]

 

[Daffodil]

i believe i have made a big mistake starting cidofovir. the AZT is making me very nauseaus and starting to give me headaches, the same kinds that happened before..when it started to clear my brain and then stopped working. i think i have a retrovirus saturating my brain and nothing will work until / if they find out what that virus is. i think i am dead.

i will continue with the cidofovir.

 

[alice1]

Daffodil I'm so sorry you're going through all this.Talk with the doc who's giving you the infusions before you take any more meds.
Sending you a big hug!!

 

[undcvr]

Daff u shud really try LDN once at least sometime.