Viruses

[JuliaFaith]

Still looking for any ideas on virus treatments (mainly the HHV-6; CMV; Epstein Barr).

 

Son has been on Valtrex for at least a year but these viruses just will not go away. Now we have a choice to make, both of them are very expensive.

 

First is the prescription Valcyte (used for cancer/HIV) which is another anti-viral which means it keeps the viruses from reproducing as much (is my understanding of it). The cost is going to be about $2500 for the first month and insurance will pay for it after that.

 

The second idea is this GcMAF treatment which is from a blood product and is supposed to help decrease the negalase which helps get the immune system restarted. This is being tried by BetterHealthGuy.com and he is blogging his treatment. It sounds a bit scary to try on a 14 yr. old but he is having some success. Cost around $900/month. Treatment can take 8-20 weeks of treatment.

 

Did get some great ideas (Famvir, Engystol, & Viragraphis)on here before (thank you!) and brought them to the doctor. She said that they all would be pretty much like the Valtrex son has been taking. Any new ideas out there would be greatly appreciated. Thank you.

[LNN]

My DD7 is fighting IgM EBV and CMV - having a very hard time with fatigue and intrusive OCD. Motrin has done wonders. She's also on artemisinin - just finishing 3rd 5-day pulse before taking a week off.

 

There's a guy in the CFS world - Rich Van Konyenburg - who has research supporting methylation/glutathione issues that shows promise. About to put kids to bed - will post the link tomorrow.

 

What sort of methylation/glutathione support have you done to this point? Anything for ATP or methionine? The stuff Jodie posted on the GcMAF looked promising, but not sure about using on a child...guess it depends on what avenues you've exhausted. Very hard decision.

 

Will log in tomorrow - very interested in what you've done so I can learn about helping DD.

[smartyjones]

julia -- you see something related to klinghardt, dont' you? have you researched/discussed pleo sanum remedies? i don't know where klinghardt stands now but when i was first researching, i found some info he had written about them - specific to strep.

 

we used them earlier in our treatement of strep. we switched drs (from the one that was a big proponent of them to someone he recommended) when we went on to investigate lyme and other infections -- the other dr uses different companies, so we stopped pleo.

 

now, ds still showed signs of strep after using pleo for about 8-9 months, but he was also on the new remedies for another year or so before he showed clear of strep. we are still treating for a remaining infection. i don't know klinghardt's opinions of pleo for other viruses but some time ago, he did recommend it for strep.

 

we have treated for cmv, ebv and hhv6 with our current dr. ds is doing quite well, still treating for another infection. i'd rate him about 90-95% -- main issue still being inappropriate overreactions.

 

 

 

[Christianmom]

My son has HHV6 and if my notes are right, he was give "ultra olive leaf" by Research Nutrition for that. Two per day. Can't say if it is helping yet. He's only be on it for a little over a week. He will be re-tested next Friday.

[JuliaFaith]

My DD7 is fighting IgM EBV and CMV - having a very hard time with fatigue and intrusive OCD. Motrin has done wonders. She's also on artemisinin - just finishing 3rd 5-day pulse before taking a week off.

 

There's a guy in the CFS world - Rich Van Konyenburg - who has research supporting methylation/glutathione issues that shows promise. About to put kids to bed - will post the link tomorrow.

 

What sort of methylation/glutathione support have you done to this point? Anything for ATP or methionine? The stuff Jodie posted on the GcMAF looked promising, but not sure about using on a child...guess it depends on what avenues you've exhausted. Very hard decision.

 

Will log in tomorrow - very interested in what you've done so I can learn about helping DD.

A parasite protocol is what really started getting rid of my sons's fatigue (been thru most of this twice now). Then after that, treating his nasal staph pretty much got rid of the rest of fatigue (unless he is flaring).

 

Most of his 'minimal OCD behaviors' (except maybe bedtime) were gone by the 3rd month of treatment (After CORE, gut healing, parasite protocol). He has not tested for Bartonella which may have something to do with this.

 

Son is also on Arteminsin which affects him greatly. Have him on 200 mg a day and pulsing 1-2 days a week at 400 mg. He really feels bad when we get up to 400. Does this treat viruses? Seems like it might.

 

He did take a Glutamine supplement for about 4 months in the beginning of treatment. We did try the B12 shots recently (to help son with fatigue and just feeling good), but he broke out in an ugly looking rash so had to stop. Dr. did not know why he had the rash so now dh uses them (and loves how he feels!-came home smiling after work 2 weeks into using them and is going to continue for now).

 

Best wishes on healing your daughter. Will be interested to hear about the CFS information. Thank you for your input.

[SSS]

Julia, sorry to sidetrack- you said you supplemented glutamine- dd and I both tested for a heavy need of it- I bought some, gave her one, she had a horrible flair/reaction-horrible.

made me think of all the glutamate threads we have seen and how too much glutamate is an issue, and seeing improvement with glutamate blockers.

I'm confused why we are showing a 'need' for it, and will never supp glutamine ever again.

 

I am/have been on bio-med boards for children on the spectrum-

some do viral protocols with naturals, using up to 3 different things at once

(OLE, virastop, Eldaberry, Enhansa curcumin, etc.)

to try and 'pull them out.'

Some will do the Valtrex or Famvir type prescription, but state it is necessary to use full dose- if not, it will allow the viruses to grow stronger, need full dosing to adequately surpress,

and watch out for yeast. And that addressing the virals like this can also pull metals.

 

I have also read threads of some parents using the GMF (sp.?) shots-

as the immune system wakes up, it can start killing off, some flairs.

Some are having mixed results-

[JuliaFaith]

ds still showed signs of strep after using pleo for about 8-9 months, but he was also on the new remedies for another year or so before he showed clear of strep. we are still treating for a remaining infection. i don't know klinghardt's opinions of pleo for other viruses but some time ago, he did recommend it for strep.

 

we have treated for cmv, ebv and hhv6 with our current dr. ds is doing quite well, still treating for another infection. i'd rate him about 90-95% -- main issue still being inappropriate overreactions.

Is 'pleo' a homeopathic med? My son has never had strep but has had a T&A and still gets sore throats. He is on alliopathic, natureopathic, & homeopathic meds/supplements right now, so we are covering all of that at the same time. You would think all of that would work.

 

What did your son take for his cmv, ebv, hhv6?

 

So glad to hear your son is doing so well! Enjoyed reading your posts on the PANDAS forum.

 

Thanks for the input.

[JuliaFaith]

Julia, sorry to sidetrack- you said you supplemented glutamine- dd and I both tested for a heavy need of it- I bought some, gave her one, she had a horrible flair/reaction-horrible.

made me think of all the glutamate threads we have seen and how too much glutamate is an issue, and seeing improvement with glutamate blockers.

I'm confused why we are showing a 'need' for it, and will never supp glutamine ever again.

 

I am/have been on bio-med boards for children on the spectrum-

some do viral protocols with naturals, using up to 3 different things at once

(OLE, virastop, Eldaberry, Enhansa curcumin, etc.)

to try and 'pull them out.'

Some will do the Valtrex or Famvir type prescription, but state it is necessary to use full dose- if not, it will allow the viruses to grow stronger, need full dosing to adequately surpress,

and watch out for yeast. And that addressing the virals like this can also pull metals.

 

I have also read threads of some parents using the GMF (sp.?) shots-

as the immune system wakes up, it can start killing off, some flairs.

Some are having mixed results-

Cannot remember if you are using ART testing? I have every supplement that is not from dr. dispensary ART tested before using it on my son to make sure it is pure. Do not need any add'l metals, bacteria etc. after working so hard at clearing them out.

 

Also, if you are doing ART testing, from what I have read, many things can disrupt their ability to diagnose well, i.e., fatigue, illness etc. Son's dr. has another person 'assisting' with the testing if it is the first visit, she is not well, etc. There are also different levels of experience (levels 1-4).

 

Interesting comment on the dosage for Valtrex. Son is take 1/2 tab 2xday at 500 mg each. Will check dosing.

 

Detoxing has been going on for over a year and hair testing has shown more metals etc. coming out thru the hair which is a good sign son is getting rid of them. Son only tested 'needed' for glutamine for ~4 months. What are glutamate blockers?

 

Are you referring to the GcMAF shots? If so, that is one of our choices right now. Have been following BetterHealthGuy.com blog on his experience. At $900/month for at least a few months of treatment (and maybe more) it is rather expensive. A bit invasive with blood from other people too.

 

Thank you for your input.

Edited January 21, 2012 by JuliaFaith

[SSS]

Hi, sorry, I probably wasn't clear on the Glutamate- there were some in depth threads on the PANDAS board about glutamate-MomwithOCDson really has

a handle on it- I understand the amino acid glutamine has to do with the lining of the gut, and when I look online under amino acids, glutamine deals with anxiety somehow-

But, excess glutamate is an 'issue' somehow tied together, which I can't figure out.

 

We do not do ART, but have found a gifted Zyto/biofeedback type practioner, who has been extremely informative and helpful along with all the lab testing.

 

Anyway, I ponder the use of prescription anti-virals for us, too.

In a current book I am reading, this particular LLMD uses full dose Valtrex as part of his protocol, since nearly every, if not all,

Lyme patient has the extremely high EBV going on- seems to help these patients.

 

I won't be considering the GMFA shots- I feel we have done enough blood products with our 2 HD-IVIG's

we did last year.

[JuliaFaith]

I understand the amino acid glutamine has to do with the lining of the gut, and when I look online under amino acids, glutamine deals with anxiety somehow-

But, excess glutamate is an 'issue' somehow tied together, which I can't figure out.

This makes sense, since my son had a stomache ache/nausea for a year before we started with this dr. Anxiety, also was one of his symptoms at the time. I wonder if those with excess glutamate do not have stomache/anxiety issues?

[LNN]

What sort of methylation/glutathione support have you done to this point? Anything for ATP or methionine? The stuff Jodie posted on the GcMAF looked promising, but not sure about using on a child...guess it depends on what avenues you've exhausted. Very hard decision.

A parasite protocol is what really started getting rid of my sons's fatigue (been thru most of this twice now). Then after that, treating his nasal staph pretty much got rid of the rest of fatigue (unless he is flaring).

 

Most of his 'minimal OCD behaviors' (except maybe bedtime) were gone by the 3rd month of treatment (After CORE, gut healing, parasite protocol). He has not tested for Bartonella which may have something to do with this.

 

Son is also on Arteminsin which affects him greatly. Have him on 200 mg a day and pulsing 1-2 days a week at 400 mg. He really feels bad when we get up to 400. Does this treat viruses? Seems like it might.

 

He did take a Glutamine supplement for about 4 months in the beginning of treatment. We did try the B12 shots recently (to help son with fatigue and just feeling good), but he broke out in an ugly looking rash so had to stop. Dr. did not know why he had the rash so now dh uses them (and loves how he feels!-came home smiling after work 2 weeks into using them and is going to continue for now).

 

Best wishes on healing your daughter. Will be interested to hear about the CFS information. Thank you for your input.

 

So I'm a bit confused - it sounds like you've gotten rid of a lot of viral issues and you haven't tested for Bart. I mentioned the methylation stuff assuming that fatigue was a major issue, as it is for us. But doesn't sound like that's the case.

I'm not sure I understand why you feel you only have two expensive options left. Sounds like the artemisinin is doing something. Why not test for/treat Bart? What are the issues you feel you can't conquer without Valcyte or GcMAF?

[LNN]

Stumbled onto this forum while looking for fatigue info - a discussion today on Valcyte...

http://forums.phoenixrising.me/showthread.php?15815-valcyte-die-off-or-adverse-reaction&p=235106#post235106

[smartyjones]

julia -- your inbox is full!

 

so is your son not experiencing anxiety now?

 

 

[MichaelTampa]

Julia - I had heard the GcMAF is human derived, did not know if it was from blood or otherwise. You've heard it's from blood? I am using it, it has helped a lot. My source is 660 euros (about $900) for 800ng which they are saying is an 8 week supply, I am using it a bit faster but surprised to hear your source saying $900 for a month. Wondering if it's a different more expensive source, or perhaps larger doses.

 

S&S - I took L-Glutamine for several months (in a product that had 3 other things) and it was incredibly useful for repairing esophagus and stomach lining, I think that is its common use. I hear there are warnings about it being to excitatory and all that, really I had used it before I heard the warnings, so it was no decision for me as I knew then it wasn't causing problems and was helping a lot.

[momofgirls]

Michael/Julia

I've read just a little about the GcMAF shots being used to boost the immune system but am wondering what their effect on autoimmunity might be. Do either of you have the additional information on how it would work for a PANDAS patient?