Discussion in 'XMRV Testing, Treatment and Transmission' started by Daffodil, May 29, 2010.
I am also going to ask my doc for an LDN prescription - might help the fibro pain.
ive done LDN for several months. it helped a little and then stopped.
with HIV dementia, when its deep in the brain, you need 1200 mg AZT...or one of the meds that get into the brain. thats why AZT only helps a little..i need more and i cant take it. there are no other meds...they dont even know whats living in my brain. cidofovir is for CMV and HHV6 but my antibodies arent even high and i have no exposure to CMV. i am just so desperate to be doing this and wasting all our money. i will have nothing left for later. what a fool i am. i know it wont work..but i cant take this anymore. i just cant take it. its too much. if the lipkin study is negative, i will suffer so much before i die..it will take years to find another pathogen. i dont want to live like this anymore
What will cross the brain barrier is ALA..alpha lapoic acid.It helps remove metals from the brain plus it's very good for the liver.
It's worth a shot Daffodil.It may give you some relief.
Also if you want to remove chemicals from your body if you're feeling too toxic take activated charcoal.It'll clean your stomach and colon
from meds.Hang in there.
Ive been saying for awhile that chelation- edta suppositories and ALA have helped me, but need to be repeated at least once a week. Should take zinc glucanate the next day to replace the zinc u lost in chelation.
I think theres even a couple articles saying that chelation has an effect on retroviruses. http://forums.phoenixrising.me/show...ion-of-retroviruses-by-metal-chelating-agents
If the vistide doesnt work after a couple months, you should definitely try BHT as well-its been studied for use against herpes viruses and aids. Im only a week in, but Im thinking clearer and my hormones seem to be coming back a bit. Ive also cut out all simple sugars and diet sodas, so those both seem to have really helped.
Edit: I feel completely recovered for 3 days on LDN, and then crashed and felt worse than ever-completely uncontinuable.
thanks for the suggestions, guys. i should apologize for my recent emotional posts..this AZT and/or Vistide is really doing a number on my brain. the swelling feels as severe as possible. almost impossible to bare. i am pretty sure its AZT working cuz i have only had 1 Vistide dose.
i think my NYC doc recommended alpha lypoic acid too....it sounds very familiar.
Lipoic acid also good for the liver and helps raise glutathione.
i would really like someone to chime in with opinions. also, i am half asleep so please forgive me if i dont make sense.
ok...so..i have been on azt for several days now. and my head is feeling really bad...like when i 1st took AZT....and i know this will last many days and then be followed by improvement in my head, but not complete resolution. the improvement is dose-dependant. when i increase the dose, i get better.
now..i declined after stopping the AZT last time. so i know that AZT is working and the other drugs (raltegravir and tenofovir), not as much if at all.
so this indicates the following possibilities:
1) my brain is literally FULL of another retrovirus and not XMRV. Evidence for: AZT helps and it seems to be dose-dependant. (I cannot safely increase the dose) Evidence against: none.
2) my brain fog/inflammation is being caused by HHV6. Evidence for: high-ish HHV6 IgG antibodies...but not that high. change in cytokine profile in plasma after ARV therapy, possibly indicating co-infection. Many patients report brain improvment after administration of anti-herpes drugs. Evidence against: very little or no help from Valcyte + Valtrex, 3 years.
3) my brain is full of XMRV. Evidence for: dr. mikovits says she would like to test brain tissue first for xmrv. so she clearly feels brain is a major reservoir. and she has told me its probably deep in my brain tissues. The Ila Singh study is wrong and the raltegravir and tenofovir arent working because Ila singh used the vp62 clone of xmrv for testing the drugs, which is not found in humans..so the drugs she tested againt xmrv might mean nothing for us (except for AZT). spinal fluid cytokines could markedly differ from plasma cytokines (indicatinig the XMRV cytokine profile is still there in the spinal fluid, despite changing in plasma).
Evidence against: most other researchers familiar with XMRV say they do not think the brain is a major reservoir.
Several of us have suggested chelation treatment and even linked it to studies showing efficacy against HIV and that it reaches the CNS. Im trying ALA, EDTA, and just ordered thiamine disulfide (in one study it suppressed HIV in certain blood elements by 99.7%, dont think its really chelation)
Lets put that to side right now, I think you may be mixing too much at a time.
I had dreadful night sweats for 3 years before I was put on Famvir for 2 months which completely cleared that one specific issue. I wasnt on famvir, and a bunch of other stuff. Its almost impossible to tell whats working and what isnt. If I was still on Benicar and antibiotics, I'd be dead. Why? They worked for months or years, and then made me ridiculously worse after. Its important to know what is sabotaging you.
You'll do what you want but my suggestion:
Try Vistide and chelation. Forget the AZT for now. Its incrediably toxic drug, and Vistide is harsh too. ITS TOO MUCH, Daffodil.
Alpha Lipoic Acid (ALA) 100mg once every 3 days (dont take any vitamins the same day). Should probably wait a couple days after Vistide to not overload your kidneys. Take zinc gluconate to replace zinc. Zinc is incrediablely low in HIV infected individuals, and Zinc Gluconate is supposed to help with allergies/autoimmune issues.
EDTA (detoxamin) 1500mg suppository, once or twice a week. (Makes a HUGE difference for me)
Thiamin Disulfide- supposedly the only thiamin to increase brain levels of thiamin, also shown to suppress HIV (article also mentitions ALA). Going to experiment for myself on the dosage.
Non chelation treatment: BHT, its working for me, slowly and surely. Im regaining some skin color (from corpse white to getting reder) and better sleep/hormones. Not sure if the diet improvement or BHT or both. BHT is shown to work against "lipid coated viruses". http://www.advance-health.com/bht.html
Diet: All sugar and diet foods/drinks must be completely eliminated. Suppressed immune system-> auto immune disease-> huge food allergies.
General article again: http://www.autismcalciumchannelopathy.com/HIV_and_Autism.html
We care about you Daffodil and are giving you some extra options. Explore them! I can give out my phone # if you want to discuss these things.
One last check list and Ill never mentition chelation again
1. Much cheaper than drugs
2. Good for everyone, even healthy people. I tested positive for arsenic poisoning after having chinese food. Doctor said it was quite common. The level of contamination by heavy metals and other toxic elements are staggering in food (mercury in fish, lead, cadmium from inhaling smoke/exhaust etc etc).
3. There are tons of articles about chelation stealing minerals from viruses/retroviruses and killing them, inactivating them, or disolving them outright.
4. Suppressed immune system have dangerous levels of biofilm, some biofilms are natural in the intestines, but overgrowths are probably 100% in suppressed immune systems. Chelation like EDTA helps remove the outer coating of biofilm so the immune system can get a handle on overgrowths.
5. Chelation helps or eliminates most heart problems.
I know I shouldnt double post but whatever IM CRAZY.
I think more and more thats it's two issues going on.
1. XMRV or something closely related. Causes alot of stuff distinctly like HIV. Mineral depeletion or excesses. Zinc, magnesium deficiencies and copper/iron excesses. Exhaustion, confusion, forever suppressed immune system.
2. Something that protects retroviruses. Maybe chemical allergies/food allergies. Maybe a herpes virus strain. Something that causes a block to improvement from traditional anti HIV medications and treatments.
LDN works great for Aids. Sucks for XMRV.
I tried 4 hiv medications, I got way worse- not herxheimer.
Benicar works for autoimmune diseases, failed for me after 8 months of working.
I took glutamine (read it was good for aids) and didnt sleep for 3 days and passed out in front of my mother.
Lysine made me worse also (supposed to be great for any virus problem).
Selenium (also supposed to be great for viruses) produces MS symptoms- weakeness in my hands and legs, bad coordination.
Valcyte/Valtrex made me feel a bit better for 2 weeks and then cause worsening of my symptoms.
NAC made my symptoms worse. Great for aids tho.
Didnt notice any lasting improvement from Hyperbaric Oxygen. Read that its good for Aids tho.
A huge list of antivirals that punish, not help, the situation.
i think u need to find something to help u get some respite from your symptoms like a good pain killer, possibly some type of narcotic, doesnt have to be used all the time, so u can try to avoid dependency if your concerned about it. But having this respite from the pain is going to allow your body to rest and make u feel alot better and reduce your stress levels(cortisol) which arent good for xmrv.
daffodil i also think it's worth doing the ala and getting a good pain killer would give you some relief which you need.
great advice guys!
Daffodil, I forgot if you are xmrv+, I looked on first page, but didn't see it. I can hear the desperation in your posts. Sounds like you need to get some relief.
I have the pressure in my head 24/7 and it's awful. I also have really horrible and constant pain. You need to have a break sometimes. I agree that a strong pain pill might be needed on occasion or whatever might work for you, maybe an anti-inflammatory.
I am waiting a while until they find if the arv's really help us. I believe a retrovirus is in play, but we don't have a lot of info to know how to treat it yet. I am using symptom relievers that help a little now. There is a lot of good advice about detox on here too. Best wishes to you.
hi all. thank you so much for your concern. just got back from 2nd vistide infusion. this time i took anti-nausea medicine so it went more smoothly. i also took some benzos. still had nausea but no vomiting...kept myself in a twlight sleep sort of state. lol exhausted now too. day after infusion i sleep all day.
re: NK cell function assay (LU30): at 2 months on ARV's it was 2, at 5 months it was 5, and at a year it was 7.5. Normal is 8-170.
on august 22, before i began Vistide and about 2.5 months after stopping AZT (i was still on ralteravir and tenofovir), i had the LU30 test done again. at this time, i was not feeling well. i was sure that stopping AZT made things a lot worse for me, and i still do...but the results say 60.
as far as i know, 60 is the value a healthy person would have. something very interesting going on.
i emailed dusty miller. a very nice person. he says he could easily found out which retrovirus i have but his hands are tied cuz his funding request was rejected and ethics committees arent letting him test CFS patients' blood. what kind of BS is this? can't we all get together and do something? he makes it sound like he has the interest and wants to help us.
alpha-Interferon treatment of patients with chronic fatigue syndrome.
See DM, Tilles JG.
Department of Medicine School of Medicine, University of California at Irvine Orange 92668, USA.
Thirty patients who fulfilled clinical criteria defined by the CDC for Chronic Fatigue Syndrome were treated with alfa 2a interferon or placebo in a double-blind crossover study. Outcome was evaluated by Natural Killer (NK) cell function, lymphocyte proliferation to mitogens and soluble antigens, CD4/CD8 counts and a 10 item Quality of Life (QOL) survey. Although mean NK function rose from 87.8 +/- 19.6 to 129.3 +/- 20.7 lytic untis (LU; p < .05) with 12 weeks of interferon therapy, there was no significant change in the other immunologic parameters or QOL scores. When the 26 patients who completed the study were stratified according to their baseline NK function and lymphocyte proliferation, 4 groups were identified: 3 patients had normal NK cell function and lymphocyte proliferation when compared to normal, healthy controls, 9 had isolated deficiency in lymphocyte proliferation, 7 had diminished NK function only, and 7 had abnormalities for both parameters. QOL scores were not significantly different for the four groups at baseline. After 12 weeks of interferon therapy, QOL score significantly improved in each of the seven patients with isolated NK cell dysfunction (mean score, 16.3 +/- 7.9) compared to baseline (39.7 +/- 12.1; p < .05). In these patients the mean NK function increased from 35.1 +/- 11.7 to 91.5 +/- 22.7 LU (p < .01). Significant improvement was not recorded for QOL in the other three groups. Thus, therapy with alpha interferon has a significant effect on the QOL of that subgroup of patients with CFS manifesting an isolated decrease in NK function.
PMID: 8675231 [PubMed - indexed for MEDLINE]
thanks charles. im not even sure if its possible for NK cell function to go from 7.5 to 60 in a couple of months...?
Sue, have you listened to the interview with Annette Whittemore on the other thread? Apparently one of the WPI's patients improved substantially in six weeks (she was in a wheelchair when she first got there).
Perhaps your doctor could consult with one of theirs and get some feedback that would help you.
Here's the thread:
thanks a lot, danny. i will watch it now.
dr. mikovits told me that the NK cell function can go up that fast...so this looks like actual proof the HIV meds worked. from 7.5 to 60 in a few months is very impressive, even if it took a year and a half on the drugs to do it.
of course, it would be nice if i actually felt a lot better too! lol
This is interesting because many non PwME folks who Tx with IFN Alpha 2a, report side effects similar to CFS. Granted not all of them know the difference between Chronic Fatigue and ME/CFS, but some of this has been reported by prominent ME docs as well. I know a lot of people who have treated with this drug, but only a couple of them have ME. I would really like to see more on this.
Be nice too if they showed a graph measuring the QOL score and NK function improvements side by side to spot correlation, if any. I didn't think they were directly connected, but maybe.
Very interesting study. Thanks for sharing.
My own experience with interferon inducers, not interferon itself has improved my lymphocytes cd8, cd4 etc and nk function.
i am not too well and my brain feels awful. i am very depressed. i watched the annette whittemore video but she didnt really mention how long that very sick patient had been sick. that makes all the difference. maybe it was only a year. andrea is doing well but maybe it is because the infection didnt spread as far because of the 15 yrs (i think) of ampligen she did...and maybe HBOT and other things. nothing is clear.
i am just hopeless. and so tired of trying. everyday i feel as if its too late.
sorry...i know you guys are going through the same thing.
Separate names with a comma.