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My child just tested possitive for bartonella. Ugh!!! I don't get it...she was sick day one in the hospital. There were no ticks around???

 

Where do you live? (NJ?) I was under the impression that much of the Northeast is "ticky".

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My child just tested possitive for bartonella. Ugh!!! I don't get it...she was sick day one in the hospital. There were no ticks around???

 

Wow! So glad you are finally getting some answers! Maybe it's congenital?

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It was Igenix but she was agitated and sick from day one in the hospital. What, were there tics in my bed or something???? I don't get this.... So should I trash the PANDAS diagnosis? and IVIG? I heard IVIG is dangerous if you have Lyme.

 

Now did the sinus infection on the MRI mean nothing and the swollen gland under her ear at ten days old mean nothing???

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It is very possible that the Bartonella is incidental and not causal to your child's problems. So, she may have had PANDAS/PITANDS or whatever for longer than the Bartonella.

However, if it is definitely positive, you really need to treat it.

A good LLMD is a great place to start. As far as IVIg being dangerous with lyme, I am not sure. I have read and been told different things by people who are in the know! I do know that our LLMD said that the timing of restarting antibiotics for Lyme after IVIg for PANDAS/PITANDS was critical. We never were able to get our child for IVIg at that point.

She clearly had lyme and was treated, but never got the all-clear from the LLMD. She refused care for a year, so we never did labs to the point of it being completely resolved. She just had IVIg a week ago and so far, we are very pleased at the results.

It is very hard to coordinate between doctors, esp LLMDs and other doctors. Some traditional doctors find some LLMD's a bit too off center for their tastes! I really feel like I had to pick one doctor as my fearless leader (hehe) and then carry on.

Good luck!

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It was Igenix but she was agitated and sick from day one in the hospital. What, were there tics in my bed or something???? I don't get this.... So should I trash the PANDAS diagnosis? and IVIG? I heard IVIG is dangerous if you have Lyme.

 

Now did the sinus infection on the MRI mean nothing and the swollen gland under her ear at ten days old mean nothing???

 

Wilma, this may not be a NEW infection but something she has had for a long time, even possibly from birth. By "got it from you", it means if a mother has it, they can pass it on to their child from birth

 

This does not necessarily mean there is no PANDAS,especially if you have already had an evaluation/testing that confirm that. Also, remember that the tick-bite infections are classified as PITAND as well. PANDAS is PITAND specifically caused by strep. People can have Lyme/PITAND as well as PANDAS

 

Thankfully you are getting answers.

I hope effective treatment will make things much better

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My child just tested possitive for bartonella. Ugh!!! I don't get it...she was sick day one in the hospital. There were no ticks around???

 

Wilma - If your daughter is like most on this forum she gets neuropsychiatric symtpms with ANY infection (hence - PITAND)... so the sinus infection was probably part of it

 

Also - you and your doctor need to reevaluate IVIG in light of the bartonella diagnosis. You need to get advice from a LLMD and coordinate that with the PANDAS doctor. My son is currently being tested (again) for lyme.. but the lyme doctor told me that we should continue with IVIG every 8 weeks because of my son's immune deficiencies. It really depends on your child's individual case.

 

I think the big thing here is that you FOUND SOMETHING that is contributing to your daughter's problems, which means that you have something to focus on now!

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Wilma, WOW, this is some news!

Though I am sorry to hear about the Bartonella in your daughter I am, too, happy you have some sort of direction as to what you are after.

 

I think you see Dr L. She did the "western blot" for my dd. Did you do Igenex on your own? How long did it take for the results?

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Wilma,

 

I know you've been through so much and just when you start to get your arms around Pandas, to have bartonella thrown at you must feel like a punch in the stomach. But it does make sense from what I can gather and from what others have said.

 

I know your daughter has had trouble with bactrim, which is commonly used for bartonella. You've also described other times when your daughter hasn't reacted the way it was expected to many drugs and treatments. So I want to mention something just for you to think about and possibly explore before you go any further with any treatment...

 

25% of the population has a gene variant - HLA DR4 - that makes it very difficult for their bodies to properly rid themselves of the toxins that are produced when bacteria are killed. This gene variant, and the high number of people who carry it, is the reason the Lyme vaccine was pulled from the market after only 2 yrs. Too many people had adverse immune reactions because they carried this gene (I can't begin to explain why - just repeating what I learned and probably screwing up the explanation). IF your daughter has this gene variant, it could be part of the explanation for why her body struggles to rid itself of toxins produced when she takes antibiotics.

 

Also, everyone produces a hormone - MSH (melanocyte stimulating hormone) that is a key hormone in controlling inflammation (a huge issue in Pandas and many if not all autoimmune diseases). Lyme patients often have very low MSH levels, which might cause large amounts of inflammation in your daughter and worsen her pandas and/or bartonella symptoms.

 

I don't fully understand it well enough, but these two factors could be part of the explanation of why some lyme kids (and maybe even Pandas kids) do well with IVIG and some don't. (thinking that if IVIG is a mega-assault on the lyme, you're going to get a major herx and if your body can't shed the toxins, you end up in a worse place for longer than expected).

 

I don't think Dr B uses either of these tests, but he and/or Smith may very well be knowledgeable about them and I would expect many of the LLMDs use them. You may want to ask them to run these two tests (HLA and MSH) before you make any treatment decisions (I would wait for some period of time after stopping the prednisone, as that could effect the MSH results). It could help you learn about how well - or poorly - your daughter is able to handle aggressive treatments. (tests must apparently be run by Labcorp and not other labs to get meaningful results)

 

This may do a better job of explaining:

http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html

 

I hope this is a positive turning point for you!

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