13th week of Valcyte

[heapsreal]

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

possibly. I think it might be why alot of us feel better on low carb diets as essentially they are low in gluten. I have had one doc say i wasnt gluten intolerant and another said on a sliding scale that i had some problems with gluten, this was after blood tests. I know i feel alot better with no carbs or gluten.

cheers!!!

 

[undcvr]

You know it's not just wheat, right? A positive gliadin test means avoidance of all gluten.

Madie

I am beginning to find out what foods gluten and gliadin is in foods. It makes sense though, I have always felt better if I don't eat anything. But now that I am specifically avoiding gliadin I feel so much better. This intolerance/sensitivity is the base from which my other CFS symptoms start including throwing my immune system out of whack.

Coupling this with the Valcyte and I can lead a 90% normal life. Kinda crazy.

 

[undcvr]

I should also mention here that my sensitivity/intolerance to wheat has not shown up in any commerical tests, that has what made this process so frustrating to me. I came back negative to Celiac's, Gluten and Gliadin commercial tests. Yet I know I am affected by it.

This has made be very interested in taking the ALCAT test and see what other foods I react to.

It has been a month since I have been trying to avoid wheat products, it has been very hard. I am basically experiencing the 'I don't eat and feel much better' syndrome.

This is where the real problem for PWCFs/ME lies I think, that a whole subset of us are missed by mainstream doctors that do not fully understand what is happening to us.

 

[mellster]

Hey undrcvr, I took the Alcat test and was baffled by how many intolerances showed up. Not for Giladin, but moderate intolerance for gluten which did not show up in celiac panel. I am having a hard time following the diet with so many exclusions (esp. gluten), but I think it might be worth a shot. cheers

 

[heapsreal]

I should also mention here that my sensitivity/intolerance to wheat has not shown up in any commerical tests, that has what made this process so frustrating to me. I came back negative to Celiac's, Gluten and Gliadin commercial tests. Yet I know I am affected by it.

This has made be very interested in taking the ALCAT test and see what other foods I react to.

It has been a month since I have been trying to avoid wheat products, it has been very hard. I am basically experiencing the 'I don't eat and feel much better' syndrome.

This is where the real problem for PWCFs/ME lies I think, that a whole subset of us are missed by mainstream doctors that do not fully understand what is happening to us.

Have u thought of reactive hypoglycaemia? trying eating just meat and see what happens, because there is no carbs in meat u shouldnt get reactive hypoglycaemia but a steadying of your blood sugar. Just a thought.

cheers!!!

 

[undcvr]

Yea I suspect that I am one of those that will show up with moderate intolerances to Gliadin that is not full blown Celiac's yet that is why it is so hard to pick up. I also suspect that I have some kind of reaction to Lectins. I have started to avoid foods comtaining Lectins too just to be safe.

I don't know about reactive hypoglycemia but I do know that I respond very well to a low carb diet in general. It is just very hard to do. I eat 2 eggs about 3 times a week, drink my own home-made yogurt and drink milk. Mostly try to avoid beans, grains, nuts and seeds. When I do eat foods I take alot of Betaine and Pancreatin enzymes to defend my disgestive system. It's been ok. A decent change and difference.

Changes like this to my lifestyle and eating habits I can cope with if it means being symptom free.

 

[redo]

Some questions still bother me:-

If, like i think, I have been recovering even before the Valcyte, why is it that only the highest dose of Valcyte works for me ? The lower doses did nothing. Same for Valtrex.

Once I go off the Valcyte, what then ? A relapse ??? So this isnt even a recovery at all, just some bizzard cosmic joke of a temporary succor. And I'm the punch line. So not funny.

I haven't read the whole thread. I am really foggy at the time. Anyways about the Valacyclovir, here's how I think it works:

I think what happens when you take Valacyclovir is that you "whip up" a little bit of an old EBV infection. Not enough to make you ill, but enough that the bodys immune system recognizes it, and activates much of it's antiviral defence system. And by doing that the body fights /all/ viruses better. So, I am thinking that most likely you're better as long as you stay on it. If it lasts even after quitting, perhaps.

Montoya whom have done Valacyclovir studies has stated that he believes it's the immuno modulatory effects of the drug which is doing good, rather than the 'normal pathways'.

 

[chloe]

why do you respond to only higher dosage of Valcyte or Valtrex?

Im responding to this old post of yours, but likely you've thought of this ---- your profile says you're a
guy, so I assume your weight might be a bit more. Many medications are dosed by mg/kg. So if you weigh more in kilograms, the corresponding dosage you require may be higher.

There can also be sex differences in dosages required, but in the context of infectious disease --- I'm not
aware of any direction per se, i.e., whether males may require more per kilogram, or females more per kilogram.

Sorry to belabor this dumb issue, but just started to read this thread. You might consider getting the
Customer Service telephone number for the pharmaceutical company from the pharmacy that dispensed
the medication.

I have the Customer Service number for Novartis that manufactures Famvir (888) 669-6682. Thought I had number for Valcyte, 'cause I talked to them today, but now can't find it. But you should be able to get these phone numbers with little trouble.

Best
Chloe

 

[undcvr]

I haven't updated this thread in awhile and some of that were posts that I put up awhile ago. As some ouf you might already know I have dropped the Valcyte dosage in half since then. I have been experimenting with various different combinations of drugs and rite now I am only on Valcyte and LDN. So far all is well.

No CFS for awhile now, quite a few months. I am aware of the body weight issue and that is not it, I am of average height and weight. I was thinking that it is more possible that the doctors totally got CFS wrong and underestimated it. Montoya lengthened his treatment period from 6 to 9 then 12 months.

 

[Daffodil]

this is so great. perhaps long term, established hhv6 (and/or ebv) infection needs a higher concentration of medication to knock it down. however, i know someone who was on 6 valcyte a day for years under lerner and still very ill. its all so confusing. he did respond a little to vistide though (till his inurance cut him off)...i guess it all depends on the strain you have..or something

 

[undcvr]

Hello, just thought that I would update this thread with how I am doing. I am still doing fine. I had one of the best summers I ever had in terms of physical exertion and activity. As I got busier with physical work in the fall I have been able to work decent hours each day. I am feeling fine, I am feeling good I am feeling lucky, in some ways.

I am still on the Valcyte and LDN, I read about what sickofcfs is taking and decided to add Valtrex too. Not much of it but some.

The only concerning thing that happened recently was in late summer when I was being physically active on a daily basis, at one point it seemed that I was coming down with something but it wasn't the feeling of just falling sick, it was the all too familiar feeling of being hit with something more, something EBV/CFS related. When I recognised those symptoms, I immediately dropped everything i was doing and started to take all the AVs, ARVs and supplements that I had at higher doses. I made sure I hit it hard and fast. I think it worked, the CFS symptoms that started was kind of vague-ish and did not last long. I recovered without it dragging out very long.

All in all, with some bumps and dips along the way, my recovery has been up. The amount of supplements that I take daily has been dramatically reduced, less of them seem to work more. I am on a simple OTC thyroid glandular supplement for energy and that works well. It's been a long time since I have experienced the slow burning grind that I associate with my CFS so much, an illness that just seems to go on forever and ever without ending.

I may not be able to get off the meds, but I am living a life so yea I feel 'lucky'. When it comes to CFS, I find that even simple things help alot. When I am under alot of stress, I stop eating foods with wheat or lectins. I generally have a low carb diet, low on refined sugars and hi in protein. I find this very helpful. Besides being careful about this I generally find that I do not have to be much more cautious in the things that I have to watch out for.

 

[undcvr]

On and off I have had CFS for about 15 years. I don't exactly consider my CFS mild but it was never really severe either except for very short periods of time when I initially contracted it. But I do know that the only reason why my CFS never really got out of hand was because of the number of supplements that I would hit it with and for very long periods of time. This is the one protocol that really saved me and made me more ready for AVs when I did go on them I think.

 

[undcvr]

I just want to mention on my thread that even before all the testing results come out, I am very sure that Dr Lipkin will not find anything, not even a HGRV to link all PWCFS and that Rick Vank's methylation therapy does not work.

CFS is a chronic low-grade illness it can be caused by virtually any pathogen if your immune system is stressed badly enough at the time of infection. The environmental factors pull the trigger for it to progress into ME/CFS.

 

[heapsreal]

Maybe like in the Dubbo study, its the initial severity is the main predictor, if infection is severe enough then this can cause immune supression itself which can then keep the infection going as well as cause adrenal fatigue etc. I know in my case i had multiple seperate infections over a 6 month period that would have been enough to keep my immune system down.

I think lipkin will find plenty of infections but just not sure if he will be able to nail it down to a single cause. If i had to describe it now i would call it a secondary immune defiency from a chronic infection of any kind??

cheers!!!

 

[undcvr]

Yea Heaps I agree with you. Many many pathogens out there can all cause the CFS and are all low grade chronic infections that were ust never caught soon enough and they spiraled out of control. But I find one single cause of it is really a fantasy of any kind, much less a retro v i think. The big question though is how to separate the ME/CFS subset into the viral and bacterial side. How to tell that for anyone in particular which infection taking root the strongest and how to get at it because at anyone time so many of us are all multiply co infected. How to raise the immune system up safely enough so that it can respond to treatments.

 

[Daffodil]

then why did the HIV drugs increase my NK cell function? do you think the severity of the mono triggered some kind of endogenous retrovirus in me?

und..have you had your NK cell function tested?

thanks!

 

[undcvr]

I have had my NKC activity tested only once, it came in right in the middle.

I am not sure why the ARVs increased your NKC activity but if they are working for you and are not causing alot of side effects, I would keep them up.
I am just trying to entertain other scenarios thats all. Like if an infection goes in and makes the immune system malfunction, bascially causing an auto immune malfunction. Then the initial infection that triggered the symptoms have already long left but the immune system is still malfunctioning.

Other times I wonder if what is happening to our immune system is just an illusion. That whatever caused the malfunction has already left the body long ago but still leaves the immune system to function wrongly. If that is true then CFS is really an 'environmental' illness and no amount of genetic tinkering might help it. It would need to be treated globally and macro-ly. Those who still have the symptoms are those that could not force the immune system to work normally and over time it just gets wilder and wilder ?

How else do you explain protocols that are supposed to help on healthy pple backfire on PWC, sometimes with disastrous results. And it could also explain why I am somewhat healthier in general compared to some of the pple here, because whenever I felt a relapse coming on I would hit it hard with all the supplements that I have and take them for long periods of time. On hindsight could be also have shown how deeply the infection had dug into the immune system ?

Maybe like in the Dubbo study, its the initial severity is the main predictor, if infection is severe enough then this can cause immune supression itself which can then keep the infection going as well as cause adrenal fatigue etc. I know in my case i had multiple seperate infections over a 6 month period that would have been enough to keep my immune system down.

cheers!!!

If this is true and considering that it is a low-grade chronic infection then it explains that what I have been doing is correct. That whenever I feel the full effects of the CFS coming I would take massive amounts about supplements to stop the symptoms getting anymore severe and support the immune system.

 

[heapsreal]

i think the nk function is initially low as the immune system is tiring, as the viral load comes down and less stress on immune system then nk function improves, i think the nk function improvement is a secondary thing. I noticed nk function improvement with av's as my viral load came down. cycloferon also noticably increased my nk function further. HIV drugs must be working on some type of infection, arent HIV drugs also active against herpes viruses as well??

cheers!!!

 

[undcvr]

I am not sure what to make of NKC activity. For pple with CFS that is viral based it is pretty straight forward, you take an AV and the NKC comes back up. But I noticed that for those whose CFS are bacterial/fungal based and when they take LDN, it can make all the symptoms that have been initially suppressed flare up again. In that sense it is not quite rite to call LDN a TH1 shifter. It might do that in the longterm but not in the short term. In the short term it does not shift at all but instead causes the immune system to draw into itself on both sides weakening whatever TH1 effect that you might already have.

Also those with bacterial/fungal based CFS that are coinfected with viruses may not respond to AVs at all and they could in fact make them worse. I wish we could do some research on this and gather data it would be so helpful in helping pple decide what meds to be on and avoiding pitfalls.

 

[undcvr]

Tamiflu

I think I stumbled onto something. Taking Tamiflu together with my other meds seem to help keep even more of my symptoms away. I am taking it long term, month to month. Amantadine isn't doing much but the Tamiflu seems to be making a decent noticeable difference.

Anybody else noticing this ?