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has any one tested neg. thru igenex?


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I see the troops have been called out.

 

"Regarding steroids, my daughter had three long tapers and we saw a huge amount of improvement but the improvements never lasted because we did not know she had Lyme"

 

So, the regression was due to Lyme? how do you know? Could it be an autoimmune response? Steroid improvement in PANDAS is considered temporary....so....just because of the regression after "huge improvements" doesn't mean the child has Lyme. Really??

 

 

S&S...many do not realize what happened to their kids until it is "too late". Meaning the strep was taken care of by the immune system and the antibodies have subsided. That happens, you know? A positive swab is great..but....your child gets strep and the process has begun....but, you don't know it. Only after weeks, or more, or weird behavior do you do something. By this time, the strep is gone...in some cases...but, the autoimmune process is in full swing.

 

Shouldn't you "herx" with Azith??

 

Jill...there is no answer for that!

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I see the troops have been called out.

 

"Regarding steroids, my daughter had three long tapers and we saw a huge amount of improvement but the improvements never lasted because we did not know she had Lyme"

 

So, the regression was due to Lyme? how do you know? Could it be an autoimmune response? Steroid improvement in PANDAS is considered temporary....so....just because of the regression after "huge improvements" doesn't mean the child has Lyme. Really??

 

Well I'm no rocket scientist but since my daughter was positive for Lyme and bartonella I am going out on a limb by saying the regression was due to Lyme/bartonella. Once we started treating for those infections her symptoms became much worse and were accompanied by physical joint pain, headaches, and vision disturbances. It took a good while for the combination of antibiotics to work but they did and she improved. For the record she was CDC negative for Lyme and positive only through igenex (igm). You are out of line to suggest that we do not know for what we are treating.

 

 

S&S...many do not realize what happened to their kids until it is "too late". Meaning the strep was taken care of by the immune system and the antibodies have subsided. That happens, you know? A positive swab is great..but....your child gets strep and the process has begun....but, you don't know it. Only after weeks, or more, or weird behavior do you do something. By this time, the strep is gone...in some cases...but, the autoimmune process is in full swing.

 

Shouldn't you "herx" with Azith??

 

Jill...there is no answer for that!

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We actually had the problem with strep and also Lyme. Both are possible, it happened to us.

When we started Azith. a Scarlatina rash broke out- we had strep in the body coming out.

But at 4 weeks on Azith., everything exploded again. Strep exposure, Lyme cycle, I don't know, no strep around that I knew of, still at treatment dose.

We went through all the expensive pandas procedures.

All I am saying is Lyme is real for us. Verified through testing and clinical dx.

Our pandas treatments never held, so we looked at Lyme.

We are seeing progress on the 2 antibiotics used for Lyme, and Lyme herbs.

I absolutely KNOW pandas is a real standalone disease/disorder.

I don't think anyone is implying it is not, but it gets percieved that way?

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Not what I said... I believe she would respond with tics and OCD if exposed to strep. Her cam k was low but within the pandas range and antineuronal titers were normal. She did not have elevated strep titers. We really had no idea what we were treating in the beginning. What I am suggesting is that without being treated for her Lyme she would not have improved with steroids and ivig as we tried.

 

 

so..Momofgirls...your child does not have PANDAS?

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WRONG ladies. Again the conversation is derailed to the comfort zone of " I thought it was pandas until I figured out it was Lyme."

 

Not the topic here. This thread is the opposite to that point. Who was negative for Lyme and just pandas, so that would not be any of you who are having success with Lyme treatment, right? You must have Lyme/co., so that is why the original author specifically said they didn't post on the Lyme board!!!

 

It is soliciting response from those who deduced Lyme was NOT an issue for their pandas kids, by whatever means they choose to reveal here.

 

These are not "anti-Lyme" posts!!! Mine is not anti-lyme, go read it. These are pro-pandas posts. Again, I would ask....if it is such a problem to have a pro-pandas thread, why are you all not compelled to adamently share similar information with similar vigor on the TS, OCD, ADHD, ASD, and LD forums? Why is this just something that has to be tolerated without a word said or your branded "anti-Lyme" on the pandas forum??? Somebody please answer that.

 

 

Many of theses posts are absolutely ani-Lyme testing and anti -Lyme doctors. You can re-read them yourself. These posts continuously try to rip apart Lyme testing and the doctors that treat. Pandas is a clinical diagnosis given all the time and I respect the doctors treat for it but it has failed many of us. I have more evidence to treat for Lyme than strep and it has nothing to do with some cross-reactive antibody from strep to Lyme.

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I absolutely KNOW pandas is a real standalone disease/disorder.

I don't think anyone is implying it is not, but it gets percieved that way?

 

It is absolutely implied, no question, by some. I have seen several posts on the Lyme board about those of us still living in the world of "so-called 'pandas'"

 

I don't have the time or desire to make confronting that notion on the Lyme board my crusade. But, I do think us PANDAS parents should be able to have a place to work our problems w/o the overt and covert insults about our kids' choices and treatments. And that post about multiple ivig's by SF mom was outrageous and completely outside the realm of this topic.

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WRONG ladies. Again the conversation is derailed to the comfort zone of " I thought it was pandas until I figured out it was Lyme."

 

Not the topic here. This thread is the opposite to that point. Who was negative for Lyme and just pandas, so that would not be any of you who are having success with Lyme treatment, right? You must have Lyme/co., so that is why the original author specifically said they didn't post on the Lyme board!!!

 

It is soliciting response from those who deduced Lyme was NOT an issue for their pandas kids, by whatever means they choose to reveal here.

 

These are not "anti-Lyme" posts!!! Mine is not anti-lyme, go read it. These are pro-pandas posts. Again, I would ask....if it is such a problem to have a pro-pandas thread, why are you all not compelled to adamently share similar information with similar vigor on the TS, OCD, ADHD, ASD, and LD forums? Why is this just something that has to be tolerated without a word said or your branded "anti-Lyme" on the pandas forum??? Somebody please answer that.

 

 

Many of theses posts are absolutely ani-Lyme testing and anti -Lyme doctors. You can re-read them yourself. These posts continuously try to rip apart Lyme testing and the doctors that treat. Pandas is a clinical diagnosis given all the time and I respect the doctors treat for it but it has failed many of us. I have more evidence to treat for Lyme than strep and it has nothing to do with some cross-reactive antibody from strep to Lyme.

 

I'll speak for me and you speak for you. I sent a tick to Igenex in 2006, years before I knew what pandas was and before Lyme was a hot topic. I've spent serious coin and tested four times. Does that sound like someone who doesn't take Lyme seriously? I stand by what I wrote, my post was not anti-Lyme. It wasn't pro-Lyme either. It was fair without an agenda.

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I absolutely KNOW pandas is a real standalone disease/disorder.

I don't think anyone is implying it is not, but it gets percieved that way?

 

It is absolutely implied, no question, by some. I have seen several posts on the Lyme board about those of us still living in the world of "so-called 'pandas'"

 

I don't have the time or desire to make confronting that notion on the Lyme board my crusade. But, I do think us PANDAS parents should be able to have a place to work our problems w/o the overt and covert insults about our kids' choices and treatments. And that post about multiple ivig's by SF mom was outrageous and completely outside the realm of this topic.

 

****Well, I felt like Momof3girls, that the Lyme testing, diagnosis, and treating Dr.s are ripped apart unfairly, too, I guess that is why I posted on here, that has not been our experience.

I usually do stay over on the Lyme board now, but cross over sometimes, like you do, too?

I care about the people here. Never have I identified like this before.

And I will say, had it not been for Lyme being talked about and shared, we would never in a million years found out, very scary for me.

 

Original OP, Dan, sending you PV's and good thoughts- I know how brutal it is to wait, and I hope it is very clear for you, and that it is negative.

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And that post about multiple ivig's by SF mom was outrageous and completely outside the realm of this topic.

 

I was talking in the context of Lyme. Not PANDAS. Why would this upset you? You are having success with PANDAS treatment? You believe in your choice of treatment? My post was not intended for you.

 

I like to request the thread be locked. This discussion is no longer helpful to the forum and it makes us ALL look bad.

 

-Wendy

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I absolutely KNOW pandas is a real standalone disease/disorder.

I don't think anyone is implying it is not, but it gets percieved that way?

 

It is absolutely implied, no question, by some. I have seen several posts on the Lyme board about those of us still living in the world of "so-called 'pandas'"

 

I don't have the time or desire to make confronting that notion on the Lyme board my crusade. But, I do think us PANDAS parents should be able to have a place to work our problems w/o the overt and covert insults about our kids' choices and treatments. And that post about multiple ivig's by SF mom was outrageous and completely outside the realm of this topic.

 

****Well, I felt like Momof3girls, that the Lyme testing, diagnosis, and treating Dr.s are ripped apart unfairly, too, I guess that is why I posted on here, that has not been our experience.

I usually do stay over on the Lyme board now, but cross over sometimes, like you do, too?

 

 

That's wrong too and you should stand up to folks that do that. I mean, if someone is going to go on the Lyme forum whenever PANDAS is mention and go on about how all lyme is really pandas and how the way you are treating your children is going to cause permanent, life threatening harm, and LLMDs are quacks who just don't know, yadda, yadda, yadda....by all means, you should stand up to them and say "This is where we come to discuss Lyme. If you don't value and validate that as a legitimate topic on its own merit, this forum will unlikely be valuable to you."

 

There have been folks on this board who have pontificated that perhaps there is no "true OCD or TS" and it's all pandas or infectious-based. I don't think those folks are going on the TS and OCD board continuously talking about pandas in an extreme and relentless manner; that would be rude and likely unwelcomed. There needs to be some understood respect that when you are in someone's house (or forum) you don't constantly criticize or you're likely not to be invited again. We are all guests here, but you get the analogy. If that doesn't seem reasonable, I ask you again, why don't you feel compelled to spread the word across all 6 boards and only compelled on this one?

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WRONG ladies. Again the conversation is derailed to the comfort zone of " I thought it was pandas until I figured out it was Lyme."

 

Not the topic here. This thread is the opposite to that point. Who was negative for Lyme and just pandas, so that would not be any of you who are having success with Lyme treatment, right? You must have Lyme/co., so that is why the original author specifically said they didn't post on the Lyme board!!!

 

It is soliciting response from those who deduced Lyme was NOT an issue for their pandas kids, by whatever means they choose to reveal here.

 

These are not "anti-Lyme" posts!!! Mine is not anti-lyme, go read it. These are pro-pandas posts. Again, I would ask....if it is such a problem to have a pro-pandas thread, why are you all not compelled to adamently share similar information with similar vigor on the TS, OCD, ADHD, ASD, and LD forums? Why is this just something that has to be tolerated without a word said or your branded "anti-Lyme" on the pandas forum??? Somebody please answer that.

Gosh, I hope that this was not directed toward my post in part! This thread is getting pretty heated. My point is that my kid absolutely started with pure Strep:PANDAS as evidenced by huge hx of Strep + and PANDAS symptomology, then symptoms subsiding with abx, many times over. I was trying to get the point across that although much more recently my kiddo tested + for Lyme and Bart, the treatment with abx at least, is the same and we have covered all bases. I do not doubt that IgeneX tested accurately, but I do question the interpretation to some extent. In addition, there is significant concern by some researchers that those who test + for Bart may be testing with a false + for Lyme. If anything, I do not wholly buy the Lyme + results. HOWEVER, MY SON IS CONSISTENTLY NORMAL AND HEALTHY FOR THE FIRST TIME IN 2 YEARS!! This stands alone. PS: I AM a part of the PANDAS community on this forum, first and foremost. Please don't send me packing because I shared my son's IgeneX results!

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And that post about multiple ivig's by SF mom was outrageous and completely outside the realm of this topic.

 

I was talking in the context of Lyme. Not PANDAS. Why would this upset you? You are having success with PANDAS treatment? You believe in your choice of treatment? My post was not intended for you.

 

I like to request the thread be locked. This discussion is no longer helpful to the forum and it makes us ALL look bad.

 

-Wendy

 

 

It was shoe-horned in the thread to scare people who you deem not to take Lyme seriously enough. It was random, irrelevant and so far removed it is at best gossip. It bothers me because it shouldn't be done. Why do you find it necessary to post these collections of Lyme stories on the PANDAS forum but none of the other boards?

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