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Thanks again Pacific Mom for all your posts... as result, many of my friends children originally diagnosed with PANDAS have since tested positive for Lyme and seeing results with the antibiotic protocol. My friend's son who has had 3 IVIGs was recently tested for Lyme and came back positive for Bartonella and Ehrlichia. He just hit his 4th week on Biaxin 500 m.g./Rifampin 300 m.g. at 50 pounds and the Herxing really kicked in with symptoms never witnesses before. Thankfully, my girlfriend gets the concept and she's holding steady with treatment. We are very hopeful he'll see recovery.

 

I have since tested two of my children, older DS who has been treated for PANDAs for almost a year now has came back positive for one of the double bands via Igenex and thankfully has no co-infections..... we'll be seeing Dr. Steve Harris on August 9th. It turns out Dr. Harris's office is about a mile from our house. If I had only known. We have been following a Lyme antibiotic protocol for several months now and feel it has helped our son's successes tremendously. We are anxiously awaiting my DD results in the next couple of days and will move forward with testing her twin brother in the near future.

 

THANK YOU, THANK YOU, THANK YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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I think its extremely important to rule out Lyme and LLD can easily get you started on a decent antibiotic protocol. Remember the testing must be done through Igenex and you must test for co-infections.

 

 

 

SF Mom - found your post from my earlier email. Now that i've read a little more, it makes more sense to me (when I first read it, I was a little overwhelmed lol). I'll request the lyme testing, and go from there.

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SF Mom,

 

Wow… your post gave me a lump in my throat. I am always sad to hear about any child dealing with lyme or coinfection, but happy to hear that you and your friends are finding further pieces to the puzzle of your children’s illness. I’m not sure if you were previously aware just how endemic N. California is for lyme and other similar infections, but I imagine you all are now.

 

So glad you are seeing improvement on new antibiotic protocol. Yes, it is the COMBINATION and proper dosages that are key to kicking these infections. That’s why it is imperative for people to be under the care of a doctor who understands this. At the end of the day, people can put any label they want on the symptoms found on this forum, but what matters is that the infectious agent(s) are kicked into submission.

 

You are fortunate to be in the care of Dr. Harris – one of the best lyme doctors in the country. After your appointment I hope that you will post back your thoughts on how you see all the pieces of the puzzle coming together for your children. I am curious as to what Dr. Harris’ thoughts are on strep as it relates to people who are positive for lyme/co’s. I think that in many cases lyme/co is the underlying infection, and another infection/stressful event comes along and triggers the onset of symptoms (it’s what happened to my daughter). So it can be deceptive. I have asked Dr. Jones about this on various occasions, and would love to hear Dr. Harris’ thoughts.

 

You know I have come and gone on various occasions to this forum beating the lyme/co’s drum, but it’s just that I see it in so many people’s stories. I wish that all PANDAS docs, and Dr. Cunningham, would make the Igenex testing a standard part of the workup – the information would be so valuable.

 

I don’t want to highjack this thread – so I will check back periodically to see if you have posted an update. I sincerely wish you all the best in figuring everything out.

 

Mary

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Just to clarify -- Igenex testing - do they automatically test for coinfections, or do I have to request that specifically?

 

 

 

SF Mom,

 

Wow… your post gave me a lump in my throat. I am always sad to hear about any child dealing with lyme or coinfection, but happy to hear that you and your friends are finding further pieces to the puzzle of your children’s illness. I’m not sure if you were previously aware just how endemic N. California is for lyme and other similar infections, but I imagine you all are now.

 

So glad you are seeing improvement on new antibiotic protocol. Yes, it is the COMBINATION and proper dosages that are key to kicking these infections. That’s why it is imperative for people to be under the care of a doctor who understands this. At the end of the day, people can put any label they want on the symptoms found on this forum, but what matters is that the infectious agent(s) are kicked into submission.

 

You are fortunate to be in the care of Dr. Harris – one of the best lyme doctors in the country. After your appointment I hope that you will post back your thoughts on how you see all the pieces of the puzzle coming together for your children. I am curious as to what Dr. Harris’ thoughts are on strep as it relates to people who are positive for lyme/co’s. I think that in many cases lyme/co is the underlying infection, and another infection/stressful event comes along and triggers the onset of symptoms (it’s what happened to my daughter). So it can be deceptive. I have asked Dr. Jones about this on various occasions, and would love to hear Dr. Harris’ thoughts.

 

You know I have come and gone on various occasions to this forum beating the lyme/co’s drum, but it’s just that I see it in so many people’s stories. I wish that all PANDAS docs, and Dr. Cunningham, would make the Igenex testing a standard part of the workup – the information would be so valuable.

 

I don’t want to highjack this thread – so I will check back periodically to see if you have posted an update. I sincerely wish you all the best in figuring everything out.

 

Mary

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You have to request co-infection panel specifically based on where you live. Once you get the requisition form from them, you can call them and they will assist in filling it out for Lyme and co-infections required. Unfortunately, they do not accept insurance but in the long run ruling in/out Lyme could save you a ton of money. Make sure you stop antibiotics one week prior to drawing blood for tests. Lyme bacteria's have the ability to roll up in a cyst form to avoid detection/treatment

and why the cyst busting drugs associated with treatment are extremely helpful.

 

-Wendy

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Best to see an LLD local to you. Dr. B is not an expert in treating Lyme, yet.

 

Since we have a big lymes thing going...

we are seeing doc B on 7/29...i have my igenex test...will he address this and follow a lymes protocal...

or do i have to still see a lymes specialist?

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as result, many of my friends children originally diagnosed with PANDAS have since tested positive for Lyme and seeing results with the antibiotic protocol.

 

I have since tested two of my children, older DS who has been treated for PANDAs for almost a year now has came back positive for one of the double bands via Igenex and thankfully has no co-infections.....

 

 

i thought i posted earlier today but looks like it got lost . . . hopefully didn't end up on some other thread...at any rate. . . .

 

SFmom -- did your children or those you are speaking of have Lyme symptoms that are not crossover pandas symptoms?

 

i know you know quite a bit about strep. i guess it doesn't really matter b/c the issue is to treat all the infections, i just think about for future thougths for others -- my ds had clear strep indicators and pretty classic pandas symptoms. only due to a friend who has Lyme, did I first have him tested with a western blot, which was completely non-reactive. 6 months or so later, i thought he should be doing better than he was and asked a dr if we should revisit Lyme. he referred us to someone else who diagnosed Lyme and a few other infections, not tick-borne. just curious if you have thoughts to share about the Lyme/strep connection.

 

re: herx. previously, i had always heard of herxing relative to yeast. recently, at a lyme dr talk, the dr stated that the spirochete bacteria (or it's actually a bacterium - ?)(pls excuse if i don't have the science correct) is the only known one that wil produce a herx. i believe pacificmama posted something of the same. has anyone heard of anti-viral meds inducing such a reaction?

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Is Dr. Harris also helping PANDAS kids that do not have Lyme or only Lyme? SF Mom: have you done the lyme testing or are you doing it with Dr. Harris? Please let me know how things go in August. I am considering making the drive to see him. Just not sure as I have driven and flown my son to so many doctors, that I am now very choosy in who I take him to. Maybe I will get the testing done first and see where to go from there. Is it hard to get a lab to draw for it? Is the test expensive?

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At the end of the day, people can put any label they want on the symptoms found on this forum, but what matters is that the infectious agent(s) are kicked into submission.

 

I am curious as to what Dr. Harris' thoughts are on strep as it relates to people who are positive for lyme/co's. I think that in many cases lyme/co is the underlying infection, and another infection/stressful event comes along and triggers the onset of symptoms (it's what happened to my daughter). So it can be deceptive. I have asked Dr. Jones about this on various occasions, and would love to hear Dr. Harris' thoughts.

 

Mary

 

 

pacificmama - i'm curious, do you have any further thoughts of your's or Dr. Jones about the lyme/strep relationship to share ?

thanks

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I'll keep you posted on Dr. Harris. I am doing the testing through Igenex via my pediatrician with a schedule appointment for Dr. Harris. He is about a 12 week wait. It is about $1,100 for Western Blot and co-infection panel. The test expense can be submitted to your insurance but they don't take insurance up front.

Edited by SF Mom
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