Answers!

[JenniferG]

Had a 1.5 hour phone consult with Dr. T today.....found out SO much. He is ordering more labs but it seems one of the reasons why abx aren't working is because part of the issue is viral not bacterial. My 3 have all had hand, foot and mouth 4-5 times and live with herpetic lesions on their mouths. He said this is all viral and that it's the same in respect as their bodies not recognizing the fact and making antibodies to the virus.....like chicken pox. Talked about a bunch of other things, got A LOT of questions answered. Not just a refill of abx.

 

Thank you! Thank you! Thank you!

[minimaxwell]

Dr T told me the other day that he is using acyclovir (sp) on some kids and having success. So glad he is helping you.

[mdmom]

I posted this another another topic today, so forgive me if you are reading it again.

 

Our LLMD found high IGG parvovirus in my son - he said that he often finds high viral loads in PANS kids. My son started taking Valtrex (acyclovir) BID last fall. Just days after starting it, he showed improvement in behavior, mood, energy level. We call it the magical blue pill.

 

Glad Dr. T. was a good resource - I talked to him last week and I am always impressed by his knowledge and willingness to help.

[Kimflow]

Does anyone have a list of viruses that are tested for with kids wiht Pandas/lyme?

 

So far, I think we have only tested for EBV. We have labs to be drawn soon and since we are still struggling with the PANDAS symptoms, I want to ask to add some of those viral titers to the testing to see if that gives us further information.

 

In addition there was some discussion on her regarding high lymphocytes indicating viruses. It seems that most of our kids have high histamines, low neutrophils, high lymphocytes from what I have been reading on this board.

 

Sometimes I feel like I am spinning my wheels but I can report happily that I think the LDN so far at the beginning dose is improving mood, verbalizations. I read that as you get to the upper limit on dosing, then you begin to experience immunmodulation.

[sf_mom]

All three of my children are positive for Coxsackies 'Foot and Mouth'.... one even has heart related issues with extremely high titers and are not sure if its the Lyme, Coxsackies or both. They are also positive for EBV and HHV6.

 

We have used a rotation of natural anti-virals that have been very helpful like viragraphis, engystol, lomatium, andrographis, olive leaf extract, V-C 'specifically formulated for Coxsackies' by Byron White, etc. We have not yet stepped it up to pharmaceutical anti-virals but may in the future. We did not even have the sores that are typical indications Coxsackies until we treated aggressively. Even though our entire family is dealing with Lyme et al, we feel the viral aspect was a big part of successful PANS treatment. We did notice herx like reaction when treating viruses.

 

Wishing you all the best with your continued investigation and treatment.

[JenniferG]

All three of my children are positive for Coxsackies 'Foot and Mouth'.... one even has heart related issues with extremely high titers and are not sure if its the Lyme, Coxsackies or both. They are also positive for EBV and HHV6.

 

We have used a rotation of natural anti-virals that have been very helpful like viragraphis, engystol, lomatium, andrographis, olive leaf extract, V-C 'specifically formulated for Coxsackies' by Byron White, etc. We have not yet stepped it up to pharmaceutical anti-virals but may in the future. We did not even have the sores that are typical indications Coxsackies until we treated aggressively. Even though our entire family is dealing with Lyme et al, we feel the viral aspect was a big part of successful PANS treatment. We did notice herx like reaction when treating viruses.

 

Wishing you all the best with your continued investigation and treatment.

Have those been "prescribed"? Olive Leaf particularly. How is it dosed?