13th week of Valcyte

Jasper, do you feel like you've done much detoxing so far?

Thanks, Lisa

Hey Lisa, no I haven't done really alot of detoxing but have done some and still continue to do it occasionally. For me my detoxing is mainly pectin, algin and clay. I take them until they stop working then I go off them for awhile. Of them all I take clay quite consistently, almost everyday. I do feel that it helps with digestive problems.

Ribavirin is a Th1shifter immune modulator on its own

http://www.ncbi.nlm.nih.gov/pubmed/9780043

Right now I am throwing it at my immune system hoping that it shifts my immune response more towards the Th1 side.

Anything that increases NCK (Natural Killer Cell Activity) also improves the Th1 response. My very first Natural Killer Cell Function Assay just came back, my results are right in the middle.

I subbed one pill of Valcyte (450mg) for one Ribavirin (2X200mg).

I am basically working on the theory there there is no retrovirus in play and that it is an immunodeficiency of a weak th1 arm that allows these viruses to stealth through the immune system.

Some observations so far :-

I did not wake up sneezing this morning.
I don't have respiratory symptoms so far today or they are a little less.

I have been using black pepper and SAM-e to keep my liver going daily. Definitely much less crashes from it.

How much black pepper?

About 1/4 tsp of black pepper 2X a day. You would be surprised, it really helps. Bioperine is quite easily standardised from black pepper so I am sure that just plain ground black pepper itself has quite a bit of it.

How do you take the pepper?

Well I actually have an encapsulator for 00 size gelatin capsules. I buy black pepper powder from the grocery store by the 1/4 gallon, really cheap. I eyeball it fill them up and take them twice a day. I do that for other spices as well, paprika and ginger mostly.

If it is true that PWCfs have trouble detoxing a certain number of psychotropic drugs especially stimulants and caffeine, the black pepper does speed up those detox pathways. Something else that I notice speed up liver detox pathways as well is DIM.

und...your being symptom-free is AMAZING. sounds like a fantasy!!!

Daff I guess you could say I got really 'lucky', a few thing had to happen my way for me and they did. I could cope with the Valcyte at the high dose long term and I was not co infected with anything else besides the EBV and HHV6. Even if I wasn't coinfected with anything else, it still took a long term hi dose therapy to get the CFS under control. I am not out of the woods yet, just cutting the dosage in half brings the symptoms back.

Maddie SAM-e's dosage is quite standard, it comes in 200mg tablets and it is either once or twice a day.

Most of the information I got about black pepper is from this website: http://delano.com/blog/?tag=piperine
You will see that it even lists all the drugs that they know that Bioperine works on, the research is quite extensive. I was very surprised.
You can take it on its own, it will cause a warming sensation in your stomach, but your best bet is to take it with food and supplements because it enhances uptake of many nutrients into the gut. Black pepper works in both the intestines and the liver, very interesting stuff. It's effect on the liver cytochrome enzymes are the most important to me.

According to John Martin's theory on stealth virus, it is very easy for viruses to evade the immune system because it is only a few antigen proteins that has to be presented to the lymphocytes to be able to activate them. My question is that, if say I take LDN or anything else that stimulate NCK activity, would the sheer number of cells mean that they will produce more antigens randomly produce the right ones ? Can the immune system learn or this is a lifetime deficiency ?

Whatever it is that is causing the ME/CFS is also causing the immune system to go out of whack. I know it is something that has already been established and repeated ad nauseum but what ever the cause of it, it is deliberately making the immune system malfunction on the TH2 side. This would also cause food in tolerances and sensitivities as the immune system misfires in the gut when it encounters incoming foods ? Not quite yet an allergy but definitely an immune response.

Having said that, I am experiencing the best summer I have ever had so far. I can train outside about 2 hrs a day 3X a week and I able to marginally tolerate the heat. Something that has always been very paralysing to me.

Nice to hear such great progress! I totally agree on the misfiring immune system causing food intolerances etc. Some docs do test thoroughly for these new intolerances but then assume that they are the reason for the whole CFS. I had a comprehensive panel done and while it is definitely possible for some intolerances to develop in life the sheer number discovered (and the onset of IBS after viral infection) was a clear indication to me that something threw the gut out of whack (some of the most intolerant stuff I had enjoyed my whole life without any issues). Now if the docs realized that they need to look for the reason for those sudden intolerances, allergies, MCS etc. then we would have made a giant leap forward.

Wow... i haven't read the thread, so i don't know how your condition was before the treatment, but this sounds quite impressive.

Glad to hear someone beat the evil beast, enjoy every day of it.

So it would seem that for the last 15 over years life has been playing a very cruel trick on me. I found out that I am intolerant to wheat, specifically Gliadin. This rite here could be the heart of my CFS issues. The trouble is that the way Gliadin interacts with my immune system is so insidious that I am not able to really tell sometimes. Kind of ironic, but if I stop eating gliadin it will stop screwing up my immune system.

What foods contain Giladin?

Is this any different from teh gluten intolerance most of us develop because of leaky gut?