I have a direction to go now. Can you read this for me?

[trintiybella]

She has 166 on Cam Kinase. Tested possitive for Bartonella.

I am attacking the bartonella and covering ourselves for strep too, just incase. (we have no indicators of strep other than 166 on Cam Kinase) She is on Bactrim and Azith.

 

I want to attack parasites because I saw her fall asleep with black walnut oil. I was thinking she just had parasites, but from what I have been reading...It could be parasites linked to the bartonella somehow. I want to deal with cytokine cascade too. And her C677T Single mutation.

 

I want to detox big time. I want to go after viruses too. She can not take a lot of supplements and concoctions that Klinghart gets into. It won't work for us. Need to get her stable first and then MAYBE it will.

 

Thing is I need help and our current doctors don't talk about probiotics, parasites etc...

 

Here are my choices, and I have to research and decide who will help me with the above mentioned list.

 

Dr. Schulaman in Brooklyn

Sophia health institue

Dr. Lashore-recommended by Dr. J.

Duke Children Hosp.

Paul Grant

Susan Swedo

Julie (associate of Buhner

Greg Lee

Dr. Bock

 

Will you please give me your opinion? Thanks again so much for all of your help. I truly would be so lost without you. You never judge or belittle the numerous confusing posts that make, and it means a lot to me. Having lyme myself makes it really hard to focus at times and help my girl, so thanks!

 

[peglem]

I do not know anything about those doctors, but just wanted to say that the CamKII activity is not specific to a strep trigger. However, I think most of the abx that would be used for bartonella would also be effective against strep, so maybe you don't need to worry about strep right now.

[trintiybella]

It is so tricky. No positive way to know its strep in our case. I guess we will just treat it and be on safe side. Thanks

[LNN]

I don't know anything about most on your list. I would avoid Duke as most there don't support Pandas or anything integrative. They are certainly IDSA oriented regardlng lyme and being in NC. won't have treated a lot of it - certainly not chronic lyme. Swedo is not a practitioner - she's a researcher. So aside from participating in the IVIG study, I don't see how she'd be able to treat your child.

 

Of the rest, I only know of Bock, who would certainly be a good choice, as would Dr O'Hara in Wilton, CT. Both are DAN doctors who understand PANS and the need for integrative care. Yet, if lyme/bartonella is your major issue, you may also need an LLMD on the team. Have you or your DD been to an LLMD yet?

 

Regrading MTHFR - while it is important, it may not be your only methylation issue. For that, you do want to add methyl-folate (not folic acid) and methyl B12. You need both to avoid a methyl trap. Very low doses to start. My DD takes 67mcg methylfolate every OTHER day and 1000 mcg methylB12 daily (methylB12 is poorly absorbed, which is why her dose is high compared to the methylfolate). But you may also want to consider additional mutations that can interfere with detox and/or make certain supplements a bad fit.

[trintiybella]

We see Dr. J. in Conneticut, but he does not speak about probiotics, detox or parasites. I really need to address those things. So right now we see: Doctor J. , Doctor T., Scott S. and Doctor B. (psychiatrist) None of them deals with what I am looking for. She is possitive for lyme and bart and has Cam Kinase of 166. which Dr. T. thinks is PANDAS but there are no other markers for PANDAS. That is what we have to go on. I need someone to pull all of this together for me.

[LNN]

Peglem is right. Elevated CamK does not mean Pandas. It does mean high cytokines and possible autoimmune response (i.e. PANS). Lyme can elevate CamK - even Dr Cunningham has said this.

 

Since you have positive lyme and Bart results, I'd see Dr M, who's 30 min north of Dr J. He's an excellent LLMD and does test/treat parasites, viral infections, PANS, lyme & co, metals, stool testing, guidance on probiotics, good knowledge of detox and balancing herbs and abx, some methylation. He has a very long waiting list. Call for an appt and ask to be put on the waiting list. He gives priority to kids. I'll PM you his contact info.

[trintiybella]

Thanks so much. I appreciate that.

[tpotter]

ART (Klinghardt) practioners actually do treat the detox, parasites, etc. (getting the body prepared) before using the heavy guns. Just to let you know.