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Can PEX help if IVIG didn't?


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I can appreciate how hard this a as been for your family. I just wanted to say, wow! Your child has had two IV IGs. That is very impressive! That's a feat many if us here in the US are trying relentlessly to do. You have done amazingly well with your resources and I find your story very inspirational. I also wanted to say, enjoy and celebrate every day that your child is well. Maybe the tics won't come back. If they do, we all know you will come back fighting for the next treatment or direction. But give it a chance. Maybe he will begin on a path to healing. I also thought llms suggestion on the book was a fabulous one.

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When DD was weaned from her bartonella abx, I was also afraid of relapse. For this reason we began the full Buhner bartonella herbal protocol (minus l-arginine). DD is now doing better after 7 months off abx that she was when she discontinued them in April.

 

I have tweeked her protocol a little and added very low doses of an herb for babesia (also addresses viral and other protozoan infections), which resulted in another gain in executive function and just plain happiness.

 

If you have trouble finding treatment with a medical doctor, can you find an herbalist that might help? Buhner's book on the mycoplasma and bartonella coinfections is the best one out there for using herbals to treat these infections.

 

Even if you find an herbalist that is not up to date with Buhner's suggestions, they can help you find the herbs and teach you how to make the tinctures and/or decoctions. This information is all summarized in the book as well. Info on sourcing the herbs is contained in the book as well, but the sites all appear to be in the US.

 

I know these herbs work. Both DD and I herx on them at high doses, and my whole family now uses knotweed for headache/inflammation.

 

If you can't find help with the mainstream, try Buhner's herbs. They have been nothing but helpful for us. His associate is available for consults if you want to make sure you are heading in the right direction, and she might be able to help with buying herbs in Europe.

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I will do my best. You must also know that most of the antiviral, herbs ecc., even some vitamins are impossible to be find here. I just don't have engough confidence even to try homeopathy - because most of the doc's don't know anything about pandas and homeopathy is here still not developed engough for me to risk.

 

 

He is now taking only abx (augmentin) and probiotics and Flax seed oil.

 

 

 

 

One step at the time -I've got a list of most of the usual testings that You do In USA (got it from FB),

 

first we will do is to talk to our infektiologist to see which tests are available here, check for Lyme , bartonela ecc.

 

Hope something will give some results..

 

he is doing litle bit better - but the fear of tics comming back just paralises me so I can't even enjoy the good days

 

I was thinking about giving him B-complex; and can You please recommend a good antiviral I can give it to him?

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Croatianmum, Have you tried homeopathy? It treats at the cellular level. Since we started, we are doing extremely well. My children each had 1 PEX and about 7 IVIGs. They helped, but not held onto the gains. We did treat for lyme and many co-infections (my younger son was dx clinically for lyme, bartonella, babesia and erlichiosis, as well as other infections, and my older son was finally diagnosed by blood test as having bartonella...I used Galaxy Labs 3 draw test after his emergency open heart surgery). Another thing to do is to really treat the gut, because 70% of the immune system is there. My older son uses an Ayurvedic dr, who uses diet, herbs and spices, while my younger son and I are doing homeopathy. Our expenses are way down, and we are doing quite well (my older son...as long as he sticks to the diet :-)

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Be careful with B complexes. Many of them contain unmethylated versions that children with MTHFR deletions can not properly use, or that will cause reactions.

 

We are using low doses of l-methylfolate, sublingual methylB12 and P-5-P - every other day. Overdosing can also cause problems.

 

I'm so sorry for the fear you are feeling, it isn't fun and does take the joy out of life. Just know that you are doing the best you can under the circumstances. Keep up the researching and GOOD WORK!

Edited by rowingmom
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Be careful with B complexes. Many of them contain unmethylated versions that children with MTHFR deletions can not properly use, or that will cause reactions.

 

We are using low doses of l-methylfolate, sublingual methylB12 and P-5-P - every other day. Overdosing can also cause problems.

 

I'm so sorry for the fear you are feeling, it isn't fun and does take the joy out of life. Just know that you are doing the best you can under the circumstances. Keep up the researching and GOOD WORK!

Yes I want to echo this about the B complex, if your son has the MTHF mutation you need to be very careful as most B complexes contain Folic Acid which can exacerbate PANS symptoms. We use a b complex that has a tiny dose of LMTHF 5 instead of Folic acid (only 200 micrograms) a few days a week and give sublingual B12 on days when DD does not take the B complex.

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thank You all - so what do I do about b-complex? we were never tested for HMHF mutation (don't even know what it is).

 

From what I've read, I undrestood that B12; B3 and aspecialy B6 are good for the tics. Do I buy them separately - is it better?

 

And about homeopathy - I'm not shure that homeopathy is developed in our coutry as is it in USA or in some other even european countrys. I can try to find someone good - but - what do I ask for? I'm definitly shure that no one of them here has never heard about PANS/PANDAS!

 

So, what do I ask for? Something for his immunesystem? Something agains strep and viruses?Or what? The same thing/questions is with herbs..

 

And a question about the gut - my son had allreday had candida in his gut; we were treating it with Plymicol. Now he is on low dosage of abx so I'm only giving him a good probiotc. Is that engough?

 

sorry for so many questions - but I would really like to know the answers.

 

Thank You all for Your help

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