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The Hammer - Vistide and Dr. Peterson

Messages
26
Hi,

I'm also a paitent of Dr. P. I've had 2 VO2 Max tests... Both were low. The first was 17% and the second was 19%. It was explained to me (whether I fully understand it is the question) that it was a form of mitochondrial myopathy-or lack of metabolizing oxygen as we can all relate. I was also not able to reach my max heart rate either time. My lung compacity was there, but the rest of my body failed. I recognize the burn feelings in my legs from my more fit days...The lactic acid burn. I also find it interesting that with my second test (both tests he also had my NK cells checked), and although I was 'feeling better' than the first test and my VO2 went up, my NK lytic activity was decreased.) I know they can vary quite a bit, but I still thought it was interesting :) Yes, I agree that deconditioning is a factor, and he also agreed when I asked that very question. But, I don't think it accounts for the amount that puts us in this category. I've never had a VO2 done a day or two after the initial test, but I can guarantee you my results would be much lower. There is definitely a crash and burn cycle. What has really helped me is to know my anaerobic threshold. By knowing this, I am able to watch my heart rate so that I don't enter the aerobic stage and reduce my flares and crashes. :D
 

hvs

Senior Member
Messages
292
Hey, everybody. I was looking at the forum because of the recent news-of-impending-news and it occurred to me that I never gave a final report on my vistide experience.
Yes, I'm healthy. I have no weariness whatsoever. No cognitive impairment. No infections of which I'm aware. I am not sick.
One lingering pest is orthostatic intolerance, what seems to me to be mild POTS. It is so mild relative to what so many people face: I am never in danger of fainting, never even tunnel vision or the like. ...Just a perceptible decline in blood pressure and an unnecessarily rapid heartbeat after a period of being upright. I could be standing talking to a friend or lifting weights--the activity doesn't matter--and eventually I'll get that low blood pressure feeling and want to sit. I guess POTS is a not uncommon after-effect of viral infections. Often it goes away after period.
Don't ask me the relationship between my defeat of the herpes-virus infections and the real possibility that XMRV is the driver for so-called "cfs." Did beating down the herpes virus flip my immune system into a state that could put the xmrv into latency? Did it simply allow my body the "personnel" to tackle the xmrv? No idea.
 

acer2000

Senior Member
Messages
818
Hey, everybody. I was looking at the forum because of the recent news-of-impending-news and it occurred to me that I never gave a final report on my vistide experience.
Yes, I'm healthy. I have no weariness whatsoever. No cognitive impairment. No infections of which I'm aware. I am not sick.
One lingering pest is orthostatic intolerance, what seems to me to be mild POTS. It is so mild relative to what so many people face: I am never in danger of fainting, never even tunnel vision or the like. ...Just a perceptible decline in blood pressure and an unnecessarily rapid heartbeat after a period of being upright. I could be standing talking to a friend or lifting weights--the activity doesn't matter--and eventually I'll get that low blood pressure feeling and want to sit. I guess POTS is a not uncommon after-effect of viral infections. Often it goes away after period.
Don't ask me the relationship between my defeat of the herpes-virus infections and the real possibility that XMRV is the driver for so-called "cfs." Did beating down the herpes virus flip my immune system into a state that could put the xmrv into latency? Did it simply allow my body the "personnel" to tackle the xmrv? No idea.

So did you test positive for XMRV too? Those are some good questions, nonetheless...
 

hvs

Senior Member
Messages
292
I tested negative according to the first version of the VIPdx test, though I was well into my recovery by the time I got the test. My spouse, though, tested positive, alas. Neither of us have been given the antibody test. I don't hold out much hope that I don't have it.
 

TheMoonIsBlue

Senior Member
Messages
442
Vistide Experiences

Is Dr. Peterson the only Doctor prescribing Vistide?

Anyone know if WPI is/will/has given this drug to anyone?

Does Vistide address the whole slew of herpes viruses-EBV, HHV-6a, CMV, etc., so opposed to oral AV's, a person would only need Vistide as opposed to multiple medications such as Valtrex and Valcyte (or others).

How long does treatment last?

Any idea if Vistide could address XMRV :Retro redface: (I know I know, I have to ask the impossible question!)
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,098
Location
australia (brisbane)
bump this one up, interesting. The only thing is its given intravenously(i think) so would need to go to the docs a couple of times a week. Maybe could be used in conjuction with oral av's as well.
The other thing that i have heard dr petterson use is immunoglobulin injections, any info on this sounds good.

cheers!!
 

Daffodil

Senior Member
Messages
5,875
i am gonna try and revive this thread since i am on vistide. it is still concerning me that everyone i have spoken to who did the treatment says that their infusions took 4 -5 hrs while mine only take 3. my doc is giving me 1 L less saline than Dr. Peterson does. he says he doesnt want to "over hydrate". i have had 2 infusions so far.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,098
Location
australia (brisbane)
i am gonna try and revive this thread since i am on vistide. it is still concerning me that everyone i have spoken to who did the treatment says that their infusions took 4 -5 hrs while mine only take 3. my doc is giving me 1 L less saline than Dr. Peterson does. he says he doesnt want to "over hydrate". i have had 2 infusions so far.

Daff if u continue to drink through the infusion it can help alot in rehydrating you, its just slower by mouth compare to by vein. with 3 hours for an infusion im sure u could drink a couple of litres of water or gatorade etc, also taking NAC before the infusion can help protect the liver too. Need to chill more sue, do all these things and u will be right.

cheers!!!
 
Messages
16
Dr. P is now a PI for the Chimerix study, you have to have a high viral load of CMV or EBV, as manifested by quantitative PCR (i.e., not just antibody but actual high numbers of virions as measured by PCR) to be eligible for the CMX001 study. I was negative, and not sure if many PWC's will be positive.
 
Messages
15
Location
Northern CA
Is there a way to contact Dr. Peterson regarding his Vistide protocol?
I'm a patient of Dr. Peterson and two months into Vistide treatment. Every 2 wks for 6 mos. He feels it's not as hard on the body as Valcyte. I took Valcyte for 1 yr. It knocked down the EBV & CMV, but not HHV6. CMV came back quickly. He says it works 70% of the time & I was in the "failure" group, so he highly recommended I start Vistide since I have a double Clonal T Cell Rearrangement as well. I get 3 liters of saline during the Vistide treatment, and 3 doses throughout the day of Probenicid. They inject 4 mg Zofran (for nausea) after Probenicid if you need it (I do). I also have a script for Zofran to take later if I need it. I feel real crummy for a couple of days after, but then am back to my usual crummy self, Lol! Dr. P says you feel sick a few days verses feeling sick all the time as with Valcyte. I've found that to be true. It's a rugged treatment for sure, but I'm tolerating it. After a few treatments I noticed I was able to do some stuff I hadn't be able to in nearly a yr. and a half. I washed some windows! There are labs done 3 x a wk. to check kidney function (rather a pain, but important!) I had one that was "off" this week with very low potassium levels. I felt like I was fading away but after a couple days rest and lots of gatorade, bananas, V8 Splash, etc. It bounced back to normal. He starts with a half dose the first 2 wks, back to back, then every 2 wks. for 6 mos.
 

Rooney

Senior Member
Messages
185
Location
SE USA
Yes, a great report, Jane.

Did you feel better on Valcyte when it knocked down you viruses, better than before you started it?

Also, is the first dose of Vistide an indication of how well a person will tolerate it?
Many thanks
 
Messages
15
Location
Northern CA
Yes, a great report, Jane.

Did you feel better on Valcyte when it knocked down you viruses, better than before you started it?

Also, is the first dose of Vistide an indication of how well a person will tolerate it?
Many thanks
Rooney,
I didn't really have a great response to Valcyte. The first 2 mos. or so are the hardest. Dr. P. told me he sees people "turn the corner" and feel better in 4 to 6 mos. I started to turn that corner with my EBV & CMV levels going down, cytokine levels decreasing and feeling better, but then it just sorta stopped working. At that point he started talking about switching to Vistide. I resisted because I knew it would be hard for me to make the trip 4 hrs each way 2 x a mo. for infusion. Obviously easier to stay home and take a pill. By the end of the year the Valcyte wasn't working anymore and the side effects were just making me feel bad. It was getting harder for me to do anything. So, I'm not a very good "valcyte story" and I know there are many! I had a friend who took it the same time I did and had a great "classic" response. She is still doing well nearly a year later.

Regarding Vistide, I'm still on the first leg of the journey. With the first dose they did it at a slower rate and watched me very closely to make sure I was ok. The nurse followed up the next day to see how I felt. I did fine and my kidney tests were fine following the treatment. So, I think the answer is that they do have a very good idea of how you will tolerate it with the first dose. I had labs done 3 wks. ago to see if its lowering the viral levels, but don't have the result yet. I should know a week from Monday. I think that was after 5 or 6 treatments.