starting cycloferron

[heapsreal]

I think in the States u might have to ask Dr Nancy Klimas as i know she does this testing, maybe she can point u in the right direction. The other test which u should get is a lymphocyte sub set test, this will include cd56 lymphocytes which is also a nk cell( i think cd57 is a part of cd 56 which they use for lyme diagnosis), but this just gives u the number of them, but maybe used as a guide as if they are higher then pre cyclo u knows its atleast increasing nk numbers, we just dont know their function.

cheers!!!

Heaps I cant get tested for NK cell function here in the US ? What is the name of your test ? I cant get tested for CD57 cell count either. That is supposedly the cells where the virus hides.

 

[Sushi]

Heaps I cant get tested for NK cell function here in the US ? What is the name of your test ? I cant get tested for CD57 cell count either. That is supposedly the cells where the virus hides.

VIPdx test CD 57 count and function.

Sushi

 

[heapsreal]

how is everyone on the av's going. Im dosing on a mon/wed/fri at 2 tabs a day, im feeling quite good but i have also been back on famvir since november so i think its the combo thats helping. Good the hear how everyone else is going.

cheers!!!

 

[undcvr]

I dont understand how Famvir is helping you. I just read up on some literature again and most of them say the samething, that Famvir is less effective than Valtrex is against HHV6. Do you know anyone else who prefers Famvir to Valtrex ?

 

[heapsreal]

i dont have hhv6 but cmv/ebv and my lymphocyte numbers come down when on famvir, others on this board who had hhv6 had their titre levels come down when on famvir. I dont think there is much actual research out there on it but i believe its more effective then valtrex, valtrex is normally just used for ebv. There is some info out there where famvir lowers the viral load of hep B and in the cfs book 'reviving the broken marrionette' it says that famvir has effect against retroviruses and this was before discovering xmrv. so i think famvir has a broader range of action then what is documented.

cheers!!!

 

[undcvr]

If you have ebv and cmv then you should really consider Valcyte. It took care of my ebv in the first 3 weeks and it has been 'not detected' ever since. Do you know how long they were on the Famvir before their lvls came down ? Mine has not changed since I started the Valcyte.

 

[heapsreal]

I dont know how long it took for them to bring their levels down, i know some are on both valcyte and famvir, hopefully they chime in and tell u more. I dont think they have been cured but have definately improved. As for valcyte and me, financially its to hard, im in australia and it would cost me 15000 bucks for about 6 months or that could be 3 months i cant recall. in australia we cant get titre levels measured so i go off lymphocyte subset test, while on famvir it took about 3 months for them to start coming down and within 12 months they were almost normal, then i switched to valtrex because it was cheaper and i went backwards to where i was pre famvir. Now im back on famvir since november and starting to feeling better, get blood test results soon so will see how its going.

cheers!!!

 

[undcvr]

Speaking about NK cell activity, these 2 products are supposed to improve NK activity: AHCC and Arabinogalactans from the Larch tree. They have been tested quite abit for this activity. If you want to try the AG (Arabinogalactans) for NK support, the the AG with low molecular weight. The one with a higher molecular weight is used more as a fiber. Since I remembered this I will be going on it again.
I also just remembered that I was feeling at one of my better times before when I was taking alot of mushrooms, Coriolus, Maitake and Reishi. I think I will start taking them again.

 

[undcvr]

Heaps, my Cycloferon vials have arrived, how the heck do you open them ? The glass at the neck is so hard I have tried snapping it but it wont come off. I have tried twice now, both times the glass broke into little pieces and fell into the solution. Is there some sort of device to snap it at the blue dot ? Can you pvt msg me about it please ?

 

[heapsreal]

easiest way is to have the dot face u and snap away from u, some wrap it in a face washer or light material, use a short quick action. there are ampoule breakers u can buy online, maybe the chemist. The ampoules are quite crappy though i must admit. Let me know if u get a rapid improvement within a few hours like a reduction in inflammation, brain fog clearing. I have heard from others who have said they have felt worse, maybe because their immune systems are kicking in. The tablets work but not that sudden brain fog clearing like injections though, more milder.

cheers and good luck

 

[Hip]

Heaps, can you tell us: how does the cycloferon by injection compare to the cycloferon oral tablets? I believe you have tied both.

 

[heapsreal]

Im on the tablets now and i take 2 tabs every mon/wed/fri morning on an empty stomache and wait atleast a half hour before i eat. The injections do seem stronger or have a strong anti-inflammatory effect i feel , as within an hour or 2 brain fog seems to clear up. There are injection protocols where the injection frequency is slowly spaced out over the course, but for simplicity i would do 1 injection 2 days in a row to start with and then 1 injection every 3 days, from what i have read its main action of increase interferon production lasts 72 hours, so every 3 days should keep interferon levels above normal, although i find the anti-inflammatory effect on brain fog only seems to last the day but as the treatment go's on brain fog lessens anyway.

I think it if u were comfortable with injections, i would start with those for say 10 injections so this would last 4-5 weeks and then change to tablets, after awhile u get sick of jabbing yourself, lol, so tablets become more convenient. I have been on them for a few months now, so might look at taking a break from them soon, only because immune modulators are suppose to be used in an intermittent fashion to keep them working, so i might take a month off. I will definately want to be on them through the aussie winter which is june to august as the last few winters i have picked up a few bugs. SO good to keep things like this in mind.

Hopefully a few more using post in here telling us their experience, i have heard from a few that felt worse, maybe from some type of die off symptoms, so be interesting to see if these symptoms kept up. Plus i have heard from others who have said they have found a difference. I think they have an added benefit if your on some type of antiviral or antibiotic treatment as it would enhance that treatment, plus if u have been tested for poor nk function as this is where interferon is suppose to help the immune system.

So keep in touch with your experience and others who have tried it, let us know how u have gone and if any improvement in blood work too.

cheers!!!

 

[energyoverload]

EBV/CMV/HHV6 Viral Titers

Heaps,

I just got my EBV/CMV and HHV6 results back. I had them done by PCR at really what I'd call a pretty much average lab in London (they don't specialise in viruses but i'm sure it's still accurate nonetheless - www.tdlpathology.com).

Do you think this is a good indicator that Antiviral drugs like Famvir and Valaciclovir would not have any benefical effect in my case? I'm wondering how reflective these tests are of any potential benefits that could be gained from antiviral therapy?

Basically it reads:

EBV DNA by PCR (quantitation) negative (No evidence for Systemically active EBV infection)

CMV DNA (PCR) - Lightcycler <600 copies/ml <600 = negative
CMV DNA not detectable respectively below the detection limit.

Herpes Virus 6 by PCR - Not Detected.

Thanks for any advice heaps, you seem to know your stuff in this area!!

Jake

 

[heapsreal]

probably not but worth it at this stage,keeping an eye on cmv levels if u get alot worse. cycloferon is worth a try as its cheap and can help with other possible infections. Try getting tests for bacterial stuff like mycoplasma and chlamydia pnuemonia as these are know to cause some problems. also a full hormone labs, testosterone total and free, estrogen/E2, dhea and cortisol to start with.

cheers!!!

 

[undcvr]

Energyoverloaded, there maybe something wrong with your test, at least with hhv6 anyway. May I ask the name of the test for that, IFA, IgA, IgM ? Most pple, up to 90% of the population would test positive for hhv6, just that the numbers would be low to indicate a past infection. It is actually quite rare to be negative for hhv6 whether you are healthy or not.

 

[garcia]

Energyoverloaded, there maybe something wrong with your test, at least with hhv6 anyway. May I ask the name of the test for that, IFA, IgA, IgM ? Most pple, up to 90% of the population would test positive for hhv6, just that the numbers would be low to indicate a past infection. It is actually quite rare to be negative for hhv6 whether you are healthy or not.

undcvr, energyoverloaded tested with a pcr test, not antibody. Talking of which I looked up the HHV-6 foundation site and this is what they recommend on pcr versus antibody tests:

http://hhv-6foundation.webs.com/faq.htm

Dr. Jose Montoya, an infectious disease specialist at Stanford University, uses IgG antibody tests done by IFA to determine whether patients qualify for antiviral treatment since PCR DNA tests are insensitive. (This virus is found mostly in the tissues and not in the blood, so it is more productive to look for indirect evidence of HHV-6 in the form of unusually elevated antibody levels).

Should I get an HHV-6 PCR DNA test? Since the HHV-6 virus tends to hibernate in the tissues rather than circulate in the blood, it is very difficult to find viral DNA in the blood. Unlike viruses such as herpes simplex where it is very easy to detect viral DNA in the blood, HHV-6 is considered a “low copy number” virus. Therefore, unless the infection is acute, (as in post-transplant encephalitis) it will not show up in most laboratory tests because the copy number will fall below the level of detection.

 

[undcvr]

Also another problem I ran into here is if you did test positive for hhv6 with the IFA, the results are open to interpretation byt doctors since it is an indirect test. RT-PCR DNA is effective in detecting EBV. It worked for me.

Also the IFA test does not distinguish between hhv6 a and b.

 

[energyoverload]

thanks guys for all the info. the hhv-6 foundation website is very informative, and it does seem as you suggested that PCR is not the most reliable measure of hhv6 infection. Especially seeing as most of it resides in tissues and in the brain, with very little in the blood.

I've decided to go ahead with Famvir anyway, I think it's worth a shot, I don't have much to loose as the antiretrovirals have done practically nothing for me in over around 9 months of treatment. I have now ditched them and will spend the dosh on Famvir instead. Some generic brands are not too expensive. I'm going 250mg 2x daily to start off with, my liver and kidney tests are all normal and will have them checked monthly.

How are you guys who are on Famvir/cyclo etc. getting on? Any slow but steady changes?

Jake

 

[Bethinoz]

I started Cycloferon on Thursday! A bit scary taking a yellow tablet from a box with Ukraine writing but willing to try just about anything. This has coincided with starting on penicillin to kill strep A infection discovered in blood test. Feeling moderately better and have been able to light exercise on top of working 4x8 hour shifts a week. Feeling hopeful that I'm on the climb!

Beth

 

[undcvr]

Hey Heaps, do you think Cyclo can be admininstered Subcu ?