Viruses

[JuliaFaith]

Been researching Valcyte anti-viral medication and seem to end up in the CFS category quite often. Symptoms seem very similar to my son's. Next visit, will see if doctor knows which of the 3 viruses son has shown to have (or had) are 'activated'. Seems important to look at this as the heart is affected as well. Long-term treatment has included "Cratoxy" which is for the heart.

 

Anyone else run into this?

[LNN]

I must be landing on some of the same sites. Valcyte scares me, as DD is just 7. But she seems to be getting worse, not better, 3 months after EBV symptoms suddenly appeared. On Sat, she asked to leave a birthday party after 15 min - she just didn't have the energy. I got her to stay an hour, but it's like the light is going out inside of her.

[lismom]

Im right there with you. With Lyme and coinfections plus HHV6, it seems near impossible for the body to fight this cronic fatigue symptom. It is the one symptom we're struggling with. Does the body have to lower the primary infections before being able to battle the herpes?

 

Anyone with good results with antiviral I'd love to hear it!

[JuliaFaith]

LLM - I am with you on the Valcyte much less for a 7 yrs. old. Sorry to hear your daughter is getting worse. My son may be too as he has very 'few back to baseline' days recently. Our only other choice right now is the GcMAF treatment which is really new and so not sure if it would be what son needs. Doctor seems to think he is doing well with the 'large' things but not improving with the smaller one (viruses). So you would think his body would kick in (immune system) and start on these viruses as well. None of the Valtrex, natureopathic etc. seem to be doing the job.

 

lismom - Really wonder what role the viruses are playing in all of this. Most people have them, but keep them 'deactivated.' Our kids seem to have 'activated' them and cannot get them deactivated. Their immune systems are just not ready to tackle these guys! Son is going on 2 yrs. of having flu-like symptoms with 14 months of lyme etc. treatment. Improvement has happened in all of his other areas except this one. Will visit doctor this week and maybe have more answers.

 

You know it is tough to beat when a ND prescribes something like Valcyte!

 

Thanks for your input.

Edited January 30, 2012 by JuliaFaith

[lismom]

I was reading a long study today for what has worked for some CFS sufferers and thought the supplements made sense. Some I have used, however not for extended period of time and one is very recognizable, resveratol. Each of the supps works towards helping the immune system but from different angles. What do you think? you may have to google one or two.

 

transfer factor classic by 4life (the author was specific on the original tf)

curcumin C3 by Bioperine

transmax resveratol by Biotivia (the author recomends the 500mg but I wouldn't start that high)

i26 HyperImmune Egg by Legacy for life (interesting supplement, works on gut)

[LNN]

I was reading a long study today for what has worked for some CFS sufferers and thought the supplements made sense. Some I have used, however not for extended period of time and one is very recognizable, resveratol. Each of the supps works towards helping the immune system but from different angles. What do you think? you may have to google one or two.

 

transfer factor classic by 4life (the author was specific on the original tf)

curcumin C3 by Bioperine

transmax resveratol by Biotivia (the author recomends the 500mg but I wouldn't start that high)

i26 HyperImmune Egg by Legacy for life (interesting supplement, works on gut)

 

Does transfer factor really work? I mean no disrespect with the question. But we used it briefly a year ago and I never had the sense it did much and it was fairly expensive if I recall. But interested in hearing if anyone has opposite experiences...

 

Likewise, we've tried curcumin without much effect. Not a dent in inflammation behaviors...then immediate response with motrin.

 

Not trying to be Debbie Downer. Just trying to sort out where to put very limited funds. Can no longer afford "nice to haves".

 

On the other hand, I've read Van Konynenburg's thoughts on CFS and methylation with some interest. Also wondering if anyone's tested for anemia or supplemented with iron? I feel like I'm overlooking something simple or obvious.

[lismom]

I was reading a long study today for what has worked for some CFS sufferers and thought the supplements made sense. Some I have used, however not for extended period of time and one is very recognizable, resveratol. Each of the supps works towards helping the immune system but from different angles. What do you think? you may have to google one or two.

 

transfer factor classic by 4life (the author was specific on the original tf)

curcumin C3 by Bioperine

transmax resveratol by Biotivia (the author recomends the 500mg but I wouldn't start that high)

i26 HyperImmune Egg by Legacy for life (interesting supplement, works on gut)

 

Does transfer factor really work? I mean no disrespect with the question. But we used it briefly a year ago and I never had the sense it did much and it was fairly expensive if I recall. But interested in hearing if anyone has opposite experiences...

 

Likewise, we've tried curcumin without much effect. Not a dent in inflammation behaviors...then immediate response with motrin.

 

Not trying to be Debbie Downer. Just trying to sort out where to put very limited funds. Can no longer afford "nice to haves".

 

On the other hand, I've read Van Konynenburg's thoughts on CFS and methylation with some interest. Also wondering if anyone's tested for anemia or supplemented with iron? I feel like I'm overlooking something simple or obvious.

 

 

 

No disrepect taken. I totally understand about limited funds. My oldest child(not ill)is being accepted to all the colleges she's applied to. Can anyone say scholarships? The one thing that stood out with the study I read, was these treatments were followed a minimum of 1 1/2 to 2 years. I don't know if the transfactor and curcumin work really for us because I only really gave it the amount of time I had with the number of pills in the bottle. I would like to hear others experience as well.

We did test for anemia right from the start of this. My sons first real obvious symptom was fatigue along with tics.Of course everything came back normal. We run blood tests every 5 months or so.

[rowingmom]

The bottom kind of drops out of my stomach to hear your story LLM, I'm so sorry.

 

Our LLMD started DD10 on Research Nutritionals Transfer Factor Multi-immune last May before we had gotten back any lab work (I think 4-life transfer factor is a little cheaper). She was to have blood taken and then start taking it right away. I found it really helped her energy (didn't help other symptoms though - pain, tics IBS), and remember thinking "maybe this is all we need". Ha. Anyway, she has not been off of it since, so now it's kind of lost in with all the other stuff. A couple of months later she started RN Lyme Plus transfer factor as well, didn't see much of a change, but we are still on that - want to boost the immune system as much as possible. We use curcumin every other day and I add a capsule with pepperine/vit D to it - can't really see a difference there either. We are GFCF low omega 6 to decrease inflammation. One thing I found to help our "coming down with flu" symptoms is COLD-FX (I'm in Canada). Three of those every few hours (with C and zinc) and we're good the next day. It's an extract of American ginseng and is supposed to increase NK cell production (which I think is what transfer factor is supposed to do). Stephen Buhner suggests in his book Herbal Antibiotics that garlic and oil of oregano have the widest effects of all the herbs he uses to attack bacteria, yeasts and viral infections, we take 1-2 raw cloves/day and 3-6 drops O of O. I know if I over-do garlic/oregano I herx. The one thing he does suggest for lyme et al. is Japanese knotweed (resveratrol). It's the knotweed, not the resveratrol that produces synergystic effects with other herbs/drugs and helps to distribute them further into the body. I have found a difference when I run out.

[JuliaFaith]

I keep wondering about arteminisin and its' anti-viral properties. Son has been on it two times now for a total of about 4 months. He still reacts with worse flu-like symptoms when he gets to 400 mg a day. Currently, he is on 200 mg a day and then 2xweek I up it to 400 mg. This is an attempt at giving him a few good days in between but there have not been those good days much lately no matter what dosage he is on. Can go up to 600 mg a day, but have yet to try it.

 

Also, has been on Quintessence (BioPure brand $88 - Andrographis; smilax, stephania root, Japanese knotweed, & Red root) for probably about a year now. In addition, he has been on Viressence (BioPure $70 - melissa; st. john's wort, oregon grape root, lomatium dissectum, golden seal, echinacea, ginko biloba, cilantro, & myrrh) for about the same time. Make a 'cocktail' with these 2 liquids, along with Artemisinin, and Lipo Health, & grapefruit juice. These are mixed and then put in 'jewelry cleaning machine' to make them quickly absorbed in the body. I make a 2-day batch and put the extra in the refrigerator. I believe this mixture is treating several things at once, not just viruses. Sure gets expensive!

 

From what I have read, some of these mixtures seem to be partially based on Buhner's work.

 

Then we add Valtrex in there and it appears we have about covered everything possible. Except for detox, 60 chlorella a day & salmon oil. I believe the chlorella might have anti-viral properties as well.

[NancyD]

Laura,

 

I absolutely love Transfer Factor. We have been using 4Life for many years (and now we also use Research Nutritionals Transfer Factor LymPlus). Transfer Factor Classic and Querciplex are two supplements I could not be without. I find it makes a huge difference in being able to prevent or reduce infections. We take up to 3 Transfer Factor Classic pills bid. Same with Querciplex.

 

Nancy

 

 

Does transfer factor really work? I mean no disrespect with the question. But we used it briefly a year ago and I never had the sense it did much and it was fairly expensive if I recall. But interested in hearing if anyone has opposite experiences...

 

[LNN]

Can you tell me about the querciplex?

 

I am chasing my tail on this virus thing. DH made the mistake of asking me where we were at with things and it was like popping a zit - I just burst out a mile a minute on all the thinking and researching I'm doing and how circular it felt and... and then I watched his eyes glaze over.

 

I know we have a virus issue. Fatigue and anxiety are huge. I know something was there before the virus. I know lots of data points. But I have yet to find an underlying puzzle piece that ties it all together. With DS, it turned out the pyroluria was that cornerstone thing. Fix that and everything else fell into place and is now responding so much better. I am on the hunt for that same cornerstone for DD and am beyond frustrated that it isn't any of the things we looked at for DS.

 

I come back to histamine and methylation. In the past 3 months, DD has had allergic reactions to omnicef (not surprising - she is allergic to amox, as is DH) but also oregano capsules and andrographis. Beuhner says only 1% of the popultation is allergic to andrographis. Her behaviors can be very agitated and swing rapidly. Ever have a cat who rubs against your leg looking to be pet then twitches its tail when you reach down. So you stop and it walks away and then suddenly from across the room it comes and shreds your leg for no apparent reason? That's dinnertime with DD lately...unless I give her a motrin at 3pm. If I do that, she gets anxiety but not fear aggressive. It keeps pointing to inflammation and histamine. It feels like she has a block that's keeping her immune system from fighting the EBV the way it should.

 

Anyone ever done any supplementing with SAMe, ATP or methionine? Feels like these might address both energy and homocysteine/histamine. Also, anyone every treated for issues with ammonia or the Krebs Cycle? Just trolling for ideas.

[SSS]

Laura, here is my .02 cents.

I think if it were my daughter, and she didn't have to be on antibiotics, but had the EBV affecting her to the degree of not being able to complete days of school from profound fatigue

(poor thing!) and naturals you've tried haven't had an impact, I think at this point,

I would give Valtrex a trial. And add in L-Lysine -

These 2 things aren't the home run for everyone, but are for a good number.

[SSS]

P.S.

I also like what I read about Research Nutritionals ATP fuel (but no experience)

and I assume you have had a thyroid panel run on her?

Hang in there-

S

[LNN]

S-

the l-lysine looks intriguing - TQ! Costco puts the Valtrex @ $228 for (30) 500mg pills - (our $6500 deductible means we pay oop for many months- I know you feel my pain). The generic pill is only $80 but it's for the 1 gram dose. Anyone know if the pill can be split w/o losing effectiveness?

 

Have never done thyroid panel but it - and adrenals - are on the list for doc on Thurs. along with new EBV & CBV titers so we can see which direction the titers are moving. Also going to ask about the resveratrol, ATP, anemia...going to be a jam packed 45 min visit.

 

The ATP and l-lysine are in line with my gut - find the basic, underlying "system" issue - the block(s) that are keeping her body from dealing with the EBV/CMV the way her peers do (50% of 5 yr olds have had EBV, 95% of adults have had it - why is it kicking HER butt and no one else's? That's the root issue I want to find and treat).

 

Thank you ALL for your support and ideas. It means a LOT!

[MichaelTampa]

S-

the l-lysine looks intriguing - TQ! Costco puts the Valtrex @ $228 for (30) 500mg pills - (our $6500 deductible means we pay oop for many months- I know you feel my pain). The generic pill is only $80 but it's for the 1 gram dose. Anyone know if the pill can be split w/o losing effectiveness?

 

Have never done thyroid panel but it - and adrenals - are on the list for doc on Thurs. along with new EBV & CBV titers so we can see which direction the titers are moving. Also going to ask about the resveratrol, ATP, anemia...going to be a jam packed 45 min visit.

 

The ATP and l-lysine are in line with my gut - find the basic, underlying "system" issue - the block(s) that are keeping her body from dealing with the EBV/CMV the way her peers do (50% of 5 yr olds have had EBV, 95% of adults have had it - why is it kicking HER butt and no one else's? That's the root issue I want to find and treat).

 

Thank you ALL for your support and ideas. It means a LOT!

 

Another underlying reason can be nagalase enzyme levels too high. Viruses create nagalase so you vitamin D binding protein (that binds vitamin D with macrophages) is not created in the body. Supplying this protein, by injection, or now available homeopathically to tell body to make it, can solve the problem and kill the viruses allowing nagalase levels to eventually return. This protein is known as GcMAF, for use with injection, but recently available as homeopathic, much more affordable and no injection, through BioPure in Europe as Homeo K MAF. If someone is caught in that vicious cycle, it's nothing lysine is going to fix up.