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13th week of Valcyte

Grape Funk

Senior Member
Messages
113
Location
USA
Heaps, i notice you say your lymphocyte tests are always high range, or above. Do you ever get checked for the Total White Blood Cell count? Is it low on range? Cuz my lymph are low, along with WBC , and EBV chronic

Undcvr, are you taking the 1800mg still, or down to 900 now? and how long has it been since you started the Valcyte? i saw you were not sure what you were going to do when decision time came with the 1800mg "time expiration limit"
 

Grape Funk

Senior Member
Messages
113
Location
USA
Btw, as undcvr mentions, i always wondered if say, EBV, or hhv6 could infiltrate our genome, and we are doomed, essentially, perpetually
 

heapsreal

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Messages
10,089
Location
australia (brisbane)
Heaps, i notice you say your lymphocyte tests are always high range, or above. Do you ever get checked for the Total White Blood Cell count? Is it low on range? Cuz my lymph are low, along with WBC , and EBV chronic

Undcvr, are you taking the 1800mg still, or down to 900 now? and how long has it been since you started the Valcyte? i saw you were not sure what you were going to do when decision time came with the 1800mg "time expiration limit"
My total lymphocyte count was high and they also do sub sets like cd8 and cd4 etc etc and cd8, cd3 were still slightly high in my last test in january, total was within normal range. cd8 is common in the herpes viruses like ebv/cmv etc.

cheers!!!
 
Messages
171
Location
London
heaps are you still on famvir? I've been on 500mg BID now for around 10 days and am getting major die off. I take it this could be a good sign? :)

Jake
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
yes 250mg twice a day, probably be on it forever, lol, but didnt get any die off from it though. As being a good sign, im not sure, atleast its doing something i suppose time will tell.

cheers!!!
 

orion

Senior Member
Messages
102
Location
UK
heaps are you still on famvir? I've been on 500mg BID now for around 10 days and am getting major die off. I take it this could be a good sign? :)

Jake

Hi Jake,

I'll be watching your progress with interest. I still haven't decided whether to try Famvir or Valtrex.

Can you tell me what symptoms you're experiencing?
 

undcvr

Senior Member
Messages
822
Location
NYC
I am averaging 1350mg a day. 450mg more on days that I am stressed more and I take the other AVs as well.
Famvir has never worked for me. Either way my insurance will not pay for both Valtrex and Famvir so I will not be taking both at the sametime.
My total WBC count has always been chronically low.

I am down to my last 2 bottles of Cycloferon and will finish them within the week.
 

undcvr

Senior Member
Messages
822
Location
NYC
Btw, as undcvr mentions, i always wondered if say, EBV, or hhv6 could infiltrate our genome, and we are doomed, essentially, perpetually

Actually Hip's blog here on PR sums it up the best. Basically a million viruses out there (in us) that we dont know anything about.
 

undcvr

Senior Member
Messages
822
Location
NYC
I am officially sick with all the attendant symptoms. This time it may actually be the flu instead of some gross ebv parody of it that is only beginning to settle down in me and to last for months and years, grinding away at me on the inside. Also it feels different. Although my throat is sore, so it could still be ebv mono or strep. But this time it really does feel like a different kind of falling ill. It feels like it is more on the surface and not deeper inside me. And also the Tamiflu is working. If it is ebv mono then I am scared becos I did not drop the does of the Vacyte since I have been on it.

I have had a flu shot this season but it is late in the season and I had it in Oct. Also many doctors believe that the flu shot is essentially useless or of limited effectiveness since the viruses would have mutated away from it since then.

Disclaimer: My experience will not be the same as most of you. In a way I brought this on myself. I went for a 3 mile run over the weekend.
 

Grape Funk

Senior Member
Messages
113
Location
USA
undcvr, when i was in so calleed remission bout 3 years back(80-90%) i would still get crashes and they would be on a friday after a tough week of workout of running a total of 15 miles a week/ plus 2 hr sport workout on top of that each day. It was like PEM extremely bad on Friday to the point where i had to curl up in a ball all night, but by the forthcoming of Sunday, i was totally fine and active to do whatever again. It was crazy, and had flu like symptoms just like u noted. I will say this tho, i kept doing this cycle until i pushed my self to the point where my body could not sustain the pressure, and i relapsed for months on end, with all original acute onset symptoms lasting for months. Have been housebound since. Be easy

Also wanted to note EBV was my culprit(main) as well/ still is
 

undcvr

Senior Member
Messages
822
Location
NYC
I am attending the Natural West Expo at the Convention center in Anaheim. It is huge. Just walked thru the supplement section on my first day here and noticed some trends. Candida and detox are very big concepts in natural wellness. The sell huge kits for Candida detox and treatments.
Sometimes I wonder if cfs/fm everything is just because the detox system of our body has broken down and all the toxins have moved in to set up home in us. If heavy metals manage to slip into our genes they can cause all sorts of problems during dna synthesis.

And it is not just heavy metals too, toxins ( PLASTICS ), drugs, environmental (mold), sensitivity to foods. Assaults and insults to our body everyday of our lives and at some point we just break down.
 

undcvr

Senior Member
Messages
822
Location
NYC
This convention weekend has been very stressful on me. While the Valcyte is keeping my EBV down, I am beginning to notice how generally weak I am in general anyway. Thankfully it is a Natural Health Wellness expo with lots of immune boosting samples to try.
 

undcvr

Senior Member
Messages
822
Location
NYC
April would be my 5th month on Valcyte. Just got home from the doctor's today and he gave me a prescription for Viread and Isentress together with the Valcyte. So that means that apart from the Valcyte, I am taking the 2 ARVs and Valtrex, Amantadine and Tamiflu. Hmmm ... I am beginning to feel abit stressed about this. Not sure how I feel about taking so many anti-virals at the sametime.

I do admit that being on the Valcyte for so long and on such a hi dose, so far so good. I do feel that I have improved definitely but at times of stress, I still feel that there is something missing. Holes in my immune system that lets things in.

Basically April the 3rd was my 5th month on Valcyte and by May the 3rd it will be my 6th. I don't know what will happen then, does anybody know what Montoya does after the 6th month ??? Please tell me. Honestly I dont think that I will be able to survive without the Valcyte, not even at a lower dose. That was what the ARVs were added for. But that is provided they helped against XMRV which I never tested for.

Oh well, at least as long as the ride lasted, it was a great one and I enjoyed it thoroughly. But to be sent into the darkness again so soon after I stepped out of it seems so damn unfair.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
dont some arv's have effects against herpes infections? Also have to remember that if its a retro virus hanging around, its the thing thats lowering your immunity and allowing these herpes viruses to reactivate in the first place, so controlling the retrovirus should strengthen your immunity against herpes infections. My 15 cents worth anyway.

cheers!!!
 

undcvr

Senior Member
Messages
822
Location
NYC
Yea they do and I kind a pushed for the ARVs myself anyway. But the fact that he actually gave them to me in the end dismayed me. Its that he thinks that XMRV could be the main culprit. I have nothing against that, its that the the recovery rate from the ARVs that we have now for XMRV is so low.
 

undcvr

Senior Member
Messages
822
Location
NYC
Baths

I just want to clarify something. At this point I have added the ARVs for less than a week. I have not felt anything yet. I am functioning, functional but not at peak health. It is just that at times when I have a relapse, the trough is very very mild.

One thing I just cannot seem so shake is the sneeze that I have everyday within hours after getting up in the morning. It feels like I still have the flu in someways I reported about this months ago as i can recall.

I have being using treatment modalities for other illnesses with some success. I have been taking baths with various ingredients in the bath water. The idea is to use your entire skin organ as a detox organ and pull out toxins into the bath water. One of them is a bath for cancer suggested by Klinghart or Schulz, I cannot remember.

2-4 oz 35% food grade H2O2
Lugol solution, 15 drops, basically for the Iodine so u can you can use green black walnut hulls or seaweed for this too

2 lbs sea salt
1lbs epson salt
1lb baking soda

Soak for 3 hrs. Altho I have never ever even made it to an hr ! As the water cools top it up with hot water so that the temp is slightly above your body's temp. This makes sure that toxins flow out into it by osmosis.

I have tried other bath ingredietns too: Pectin, Clay, Seaweed, Brewer's yeast, yogurt.
 

undcvr

Senior Member
Messages
822
Location
NYC
Wikipedia entry on XMRV states that the Dr Ian Lipkin study on XMRV is already out in the Science journal.

"At the meeting, it was announced that Ian Lipkin would oversee a multi-centre, multi-stage trial that would culminate in blinded testing of 150 CFS patients and 150 healthy but comparable donors by laboratories at the Whittemore Peterson Institute, the NIH and the CDC.[39] The journal Science reported in 2011 that the preliminary phase of this project yielded inconclusive data. Although four patients tested positive at two of the sites, no patient was positive after repeated testing."

Anybody know anything ?
 

undcvr

Senior Member
Messages
822
Location
NYC
Ive been here before

Its been about a week since I went on the ARVs. At the beginning I felt nothing but I am beginning to feel sick, weak and generally very blah. My hands are cold all the time, no amount of sleep can make me feel better and lots of hair fall out when I shampoo. My nasal passages are almost always congested now and I have difficulty breathing for much of the day. Surprisingly I do not have trouble falling a sleep yet. This is the one symptom I am missing this time round.

- I have been here before. It has happened numerous times to me in the past when I take supplements that are supposed to help me or for detox. I think I am herxing. I call it the 'slow grind' where nothing I do or take makes me feel any better and I have to just wait for the whole experience to pass. This time though, it is much milder and shallower than anything that I have experienced in the past before. I am not sure what it means. It is my cfs symptoms being triggered and I am going into a relapse or is this what they call IRIS or a 'healing crisis' ?I do remember though that each time in the past when I have come out of this cycle i did feel much better, i think. Can't remember some of those experiences were so fuzzy and so out-of-this-world.

I thought that I was gettg better since coming back from the West Coast but I guess not.
 

undcvr

Senior Member
Messages
822
Location
NYC
I think I am just surfacing from a detox/IRIS/herx trough cycle that started about a month ago. It has been awful during these periods my short term memory disappears, I have trouble sleeping at nite for no reason. intestinal issues flare and all my symptoms seem to come at me at the same time. I cannot tell if the addition of the new ARVs brought it on, it may just be a coincidence.

But I am a bit excited about this. The last few times they happened I was able to identify them and it seems like they take shorter amounts of time now to complete. They used to be super cycles that just went on and on, at least 6 months to a year. There was no head or no tail at as i wud quikly dovetail into the next cycle. I think that taking the supplements to support detox really helped. I am not talking about supplements that trigger or exacerbate detox but those that help the body faster handle the detox chemicals when it is already happening.
 

undcvr

Senior Member
Messages
822
Location
NYC
I am beginning to this that the reason why this most recent relapse was so mild was becos of the heavy detox protocol I started. It was the only thing that I changed significantly over the past few months. Oh that and the ARVs, how can I forget but really the more I think about it the more it has to be the pectin especially. It induces a very specifc reaction in me.