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Hello- well, it is a big question, I think.

My dd tested high EBV, HHV-6, CVM.

We have her on 1 Famvir a day. For my viral issues, I am taking 1 OLE, and drops of Beyond Balance IMN-V.

There is a bio-med board I frequent, and the belief there is that if you dose the anti-virals too low (like Valtrex or Famvir, say) it could cause more harm than good. Our Dr. seems to think just the one dose of Famvir for dd is enough, and as I don't want to tax her liver, but I do wonder- she just recently had a nasty canker sore in her mouth for a long time- and this is the girl who never gets 'sick' no colds, coughs, etc. I have done viral protocols with her in the past with naturals, and had month long full body breakout die off.

I don't appear viral, either, that I know of-

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Sorry, the natural anti-viral protocol I did with her 2 years ago was high dose Enhansa (curcumin) with a large vitamin C push- she broke out in a chicken pox rash that moved down her entire body for 30 days while on the protocol- they did not itch, yes she was vaccinated for chicken pox, I took her to Dr. in the middle of it, all he could say was:

Hmm, looks like chicken pox!

After the rash went away, I tapered her down off the Enhansa.

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The most aggressive anti-viral protocol we have used over the last year was Engystol (3 x days) and Viragraphis (2 x day). Our entire family is dealing we a heavy viral component. We did try Olive Leaf Extract (high dose) and Oil of Oregano and they did not fully eradicate viruses after a years use. Both herbs, OLE and Oil of Oregano created herx like reaction so assumed they helped 'at the time'.

 

Viragraphis is mostly Andrographis: Andrographis is the herb believed to have saved India from the 1918 Flu epidemic: http://en.wikipedia.org/wiki/Andrographis_paniculata

 

You can find both products from Pure Formulas on-line. Typical treatment timeframe is 3 to 6 months per one of our LLMDs. Each of our family members broke out in some type of viral response 3 to 6 weeks after starting anti-viral protocol which consisted of mouth sores, face sores, leg sores... mostly canker sore 'like'. This is just antidotal information, so please take it how you like. Both of the LLMD we see have found a huge viral component in PANDAS like children. One of our Dr.'s does ART testing and every prior PANDAS child he sees has had a viral component and most often it was XMRV plus some other viruses. Again, some Dr.'s believe like worms or mold, viruses need to be dealt with to make full advances with Lyme treatment. Our experience was that treating the viruses was as critical to our continued success as specific combinations of antibiotics, KPU, Detox, etc.

 

Our twins can not take pills so they take: Andrographis drops, Engystol and IMN-V 'Beyond Balance'. Two of our children appear to be viral free/or lower load and are no longer using anti-viral protocol.... However, we will not hesitate to retreat for a shorter period if there is an obvious virus in the household.

 

Edit: XMRV is expensive to test for at $600.00 and often results can be unreliable. It is also my understanding that many viruses are smaller than antibodies potentially crossing BBB (you can research this on-line, Texas A & M notes, etc.) and it is also difficult to filter out viruses via blood product or IVIG. I personally believe it is especially important to treat ongoing for viruses while doing regular IVIG treatments.

 

-Wendy

Edited by SF Mom
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Just have a quick moment...my son has been on valtrex since the beginning (1/2 morning - 1/2 night) and another, I believe, just by the name of it is: Viressence by BioPure (liquid - also since the beginning of treatment). Has not tested worse as far as I know but not sure if any better in this area either. They are listed as "microbials" on treatment sheet which includes other herbs as well. Have a quick appt. today, will ask about it.

 

**Went to doctor today and she thinks that HHV-6 is a continuing viral problem for my son. This is after ART testing for the past year. Son will be doing a blood draw and she has them checking for HHV-6; EBV; & CMV. Interesting to hear about the XMRV too. Thank you for sharing Wendy.

Edited by JuliaFaith
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  • 2 years later...

I have to say almost 3 years later we are still dealing with some viruses. For me, my EBV was still very high and showed as an active infection.

 

I had little patches of raised skin. I went to the dermatologist and she said that she couldn't possibly burn them all off. They are very small and not noticeable unless I point them out. However, it is very common to have them with Lyme et al. They were consider viral tags and are almost completely gone now. What has helped me was regular 35% food grade hydrogen baths (please read proper dilution on-line before taking bath). Hydrogen bath will also help with any topical strep 'perennial' or staph. I have also been doing HD IV Vitamin C and ozone treatments. The combination of those two therapies has almost completely resolved the tags. I am also doing heavy metal chelation as viruses like to cling to heavy metals. I will rerun my titers at the one year mark in November of 2014. I am hopeful we have gotten at root of the problem.

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We have been given Valtrex for my daughter's high HHV6 titers. I haven't started it yet because we are also making several other changes and I like to do one thing at a time. I did some research when her HHV6 came back so high. There is a Dr. Montoya at Stanford that has done a few studies on chronic fatigue, HHV6 and anti-virals. It seems that Valtrex doesn't work as well on HHV6 as the drug Valcyte. I talked with our Doctor about that when he gave us Valtrex. He said he likes to start with Valtrex because it is much cheaper and it has less side effects. Then if there is no response, he will switch to Valcyte. However, from the studies I read Valcyte has a very good success rate and the side effects can be controlled by starting at a very low dose and slowly increasing. I guess we will start with the Valtrex though since that's what he wants. Probably be another week or so though.

 

Dedee

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I started this post when my DD was dx'd with EBV. We did 2 cycles of artemisinin (6 weeks of 5 days/wk then a week break in between, then another 6 weeks, I think). Didn't help much. We then tried l-lysine 500mg 2x/day - viola. Within a week, she was off the couch. Within 3 weeks, she was ready to go back to school 6 hrs/day. After 6 weeks, she returned to school full time.

 

I love l-lysine. It's my "go to" for canker sores and any onset of cold symptoms. It doesn't always work. Sometimes the cold comes on full bore anyway. But sometimes, it stops the cold in its tracks. I have a 50/50 track record against colds. it was awesome against EBV.

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Two years later, after Valtrex, Valcyte, homepathy, naturopathy, my son ended up doing GCMAF which got him out of the viral symptoms. They do have some new products that may be easier to take than the shots we did. www.gcmaf.eu Six months out from treatment and he is holding steady at a new,much higher baseline. Will be interesting to see his blood work we just did.

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I will add the l-lysine back in with all the other stuff *sigh*. I have a couch kid right now unless I make her go outside. Clearly, her blood work shows she is a viral kid. I took her off it after a short stint about a year ago, and now I do not recall why :unsure: .

 

LLM, any brand recommendations? We have the Now brand, 1000mg which I break in half. Kiddo is 12 and about 75lbs.

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Adding that lysine at 3ish today tipped her over the edge to a herx style reaction. She had been on the antiviral protocol since Sunday, but 2 hours after the lysine, her vocal tic came on strong and she was upset. Another hour or so after charcoal and she was better again.

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We lowered DS16's Valtrex and he was a wreck, fatigued, etc. JUst upped it back and he is slowly coming back (but very noticeable in just 9 hours). He did not respond at all to l-lysine, but neither did I .

 

We are also doing Reishe for the viruses. He also has low WBC that they think may be from the Bartonella (or BLO).

 

Waiting on the Sidaacuta and Hawthorne. Anyone ever try giving these in capsules?

 

T.Anna

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