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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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danddd

has any one tested neg. thru igenex?

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Pandas 16: I am sorry you do not see my other post. It clearly states I do not think it is all Lyme and there are ways to build a case that makes Lyme 'more likely or less likely' outside of just testing via Igenex. I actually believe Igenex testing can be very misleading to some. Two of my children were clearly serologically negative and still had Lyme.

 

Regardless this thread has taken a turn for the worst. I do not appreciate the personal attacks regarding our family's story being relevant to the topic and owed an apology. But, that is my perspective. I often do not like some of the discussion about steroid use over on Lyme forum but I never attack those PANDAS moms posting their stories because it has worked to get their children well. There no longer needs to be the debate if Lyme is issue for many PANDAS children. There are far too many children now being successfully treated for Lyme et al that were once being treated for PANDAS. You can call it whatever you like but the PANDAS Dr. would be well severed to pay attention to some of the protocol's used by LLMDs ensure those with just PANDAS or other chronic infections have sustained recoveries i.e. detox, biofilm treatments, testing for mineral deficiencies, viral component, etc.

 

As you know..... and I know you did the research. Strep has an L form and it exist in Biofilms along with many other bacteria's. As for DNA swapping, I'll let you do the research on that.

 

I couldn't agree with this statement more "If your child isn't improving on one treatment regimen under one diagnosis, keep testing and searching until you find the treatment(s) that work best. Nobody really knows all the answers yet, including the "medical experts" specializing in both PANDAS and Lyme".

 

 

-Wendy

 

You need to read more carefully. No apology nor etiquette lessons are warranted from anyone here. Neither Pandas16, PMom nor I were referring to your post about your family that you since deleted. We were refferring to the utter nonsense you chose to insert in this thread that you "got in a PM from someone else who spoke to some mystery doc about someone else's kid" AND was completely off-topic to boot. Your choice to insert that misinformation about a common PANDAS treatment on this forum on this thread was passive-aggressive and the cause of the thread's "turn for the worse." You state the disclaimer in many of your posts you do not think it is all Lyme/Co, but what you post afterward implies it is....over and over and over. If that is not your intention, then there is nothing I can say to help you avoid doing the same thing in future posts.

 

 

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Please try to raise the level of discourse. Mistreated Lyme is tragic. The story I posted is one of many. You would only need to sit in our LLMDs office for one hour to see how tragic it can be for some individuals. Please try to support the fact that not everyone has seen the successes you have had with PANDAS treatment.

 

I understand you don't like what I have to say. You can put me on ignore. BUT, you are right I will continue to post when I feel it relevant and how I feel is relevant. Just like you will. So, lets move on and start doing what is really important and that is to help others to have successful treatments for their children too. Sometimes that will mean moving beyond PANDAS and immune modulating treatments.

 

As for my supposed disclaimer that "I do not believe it all to be Lyme". It is true, I do not believe it all to be Lyme. There are many 'we' have helped go beyond PANDAS treatment that did not have Lyme but perhaps worms, staph, mycoplasma, strep, huge viral component, KPU. These people know me a little bit better than you and know when I make that statement like that it is not just a passive aggressive on my part.

 

-Wendy

Edited by SF Mom

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Mistreated PANDAS is tragic!! Making a newcomer afraid of steroids because of "lyme" is tragic! I have NO DOUBT your story is one of MANY. I have been there, done that...and it IS really tragic...you are right. LLMD's office's full of people who are suffering from something and any LLMD I know of (not all , I know) will say LYME and pump you full of Lyme treatments. yes, the stories are abundant, but, there is nothing to prove these negative people have Lyme. Clinical symptoms? Ok....is Lyme the only reason for these symptoms??? COULD the possibilty exist that PANDAS kids cross react with Lyme tests??? Crazy thought...huh? Could the possibility exist that not all PANDAS kids will see 100% remission of symptoms WITHOUT it then being Lyme?? Possible?

 

Have you ever supported a strictly PANDAS diagnosis? (without it then being worms, etc)

 

I really don't expect a response.

Edited by P.Mom

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I would like to hear of the many kids you know of that have been diagnosed PANDAS but then successfully treated for Lyme. Successfully to me means no symptoms...no meds...no regression when off antibiotics...no reactions to strep...nothing. Now, that is success.

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Danddd....I am sorry this post got crazy. Worried Dad...you know I have the utmost respect for you ...but, I will beg to differ that the clinical symptoms of Lyme and PANDAS are blurry. Suddden onset....a totally different child after documented strep.....predominant OCD, tics, anxiety, etc.....suddenly....very unique to PANDAS...not your "typical" Lyme symptoms. Yep.....I already know about the many that disagree. Perhaps many Lyme folks (kids) are misdiagnosed...and are actually PANDAS??? (even when PANDAS treatments are not 100% effective) Isn't that a crazy thing to think?

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Making a newcomers with positive "lyme" results feel it is o.k. to move forward with month long steroids tapers is potentially tragic too!

 

COULD the possibilty exist that PANDAS kids cross react with Lyme tests??? Possibly, but there are some very good test that don't look at antibodies that are more conclusive if Lyme is an issue. My point in an early post. Igenex testing is only an indicator.

 

Could the possibility exist that not all PANDAS kids will see 100% remission of symptoms WITHOUT it then being Lyme?? Yes obviously possible... see my prior post. Perhaps the strep is wrapped up in biofilms and releasing low level toxins.. hence very low level symptoms... We don't know all the answer yet.

 

Have you ever supported a strictly PANDAS diagnosis? Yes, of course.

 

Our experience is that our LLMD was very conservative and didn't immediately announce it was Lyme. As you know, we did a ton of testing. However, our LLMD did say initially to me 'Lyme or not' he thought he could help turn down our son's hype-immune response. I do know not all LLMD are created equal and can understand why you might have that impression. I have also heard the opposite where they are too quick to say its not Lyme and missed proper diagnoses.

 

-Wendy

Edited by SF Mom

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COULD the possibilty exist that PANDAS kids cross react with Lyme tests??? Possibly, but there are some very good test that don't look at antibodies that are more conclusive if Lyme is an issue. My point in an early post. Igenex testing is only an indicator.

 

 

 

What are these tests? PCR? If you read about it...it is not so great of a test. What other ones? How many on the Lyme forum are treating their kids based on these "other tests?" Not many...I gather. Most are treating on clinical symptoms or a positive (IGM)..or even negative...regular old western blot....regardless IGENEX or not. ( for those that are IGG positive....I am not referring to you)

Edited by P.Mom

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Please try to raise the level of discourse. Mistreated Lyme is tragic. The story I posted is one of many. You would only need to sit in our LLMDs office for one hour to see how tragic it can be for some individuals. Please try to support the fact that not everyone has seen the successes you have had with PANDAS treatment.

 

I understand you don't like what I have to say. You can put me on ignore. BUT, you are right I will continue to post when I feel it relevant and how I feel is relevant. Just like you will. So, lets move on and start doing what is really important and that is to help others to have successful treatments for their children too. Sometimes that will mean moving beyond PANDAS and immune modulating treatments.

 

As for my supposed disclaimer that "I do not believe it all to be Lyme". It is true, I do not believe it all to be Lyme. There are many 'we' have helped go beyond PANDAS treatment that did not have Lyme but perhaps worms, staph, mycoplasma, strep, huge viral component, KPU. These people know me a little bit better than you and know when I make that statement like that it is not just a passive aggressive on my part.

 

-Wendy

 

No, I don't think I will move on. YOU have an ax to grind on this board. YOU have an agenda. You are only concerned about misdiagnosed Lyme as PANDAS? Why don't you share your story and philosophy with the clinical symptoms presented on the OCD, TS, ASD, ADHD and LD forums too??? Aren't those all clinical symptoms of Lyme? Don't you care about those children??? I find these posts of yours disingenuous and frankly, undermine the legitimacy of Lyme Disease by your extreme and relentless posting of this nature. But if that's your goal, by all means, keep it up.

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I have read countless times that negative strep titers do not necessarily rule out pandas. Many have posted that some kids don't make antibodies to strep but still may be infected. How is it any different when Lyme moms make similar statements about Lyme. These anti-lyme posts do a real disservice to parents on this board trying to figure out what is wrong with their child. Lyme may not be an issue for all of these kids but it seems more and more are finding out every week that it is. Many parents have posted great improvement once addressing Lyme and co-infections and some of you seem to continuously try to discredit them. It's sad because Pitands kids infected with Lyme may never have a chance to get well if infections are not treated properly. 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. We waisted an entire year on ivig and steroids. I only hope others can learn from my mistakes and that is why we continue to press parents to test for Lyme.

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What are the definitive tests for pandas? Just a positive swab following an episode?

What about the ones (us) who never had a positive swab?

Our pandas diagnosis was only a clinical one, based on what I told the Dr., and a positive response to a trial of Azith.

(which could have been based on other bacterial infections)

Did the CamK, another test that doesn't tell me, yes, it is strep induced only.

I don't want to get into drama, I really don't, but pandas is a clinical dx.

How can it be outrageous that Lyme is sometimes diagnosed that way, too, when the tests don't come back saying 'positive'?

And my personal Bartonella and Lyme PCR did come back black and white positive.

But when that doesn't happen, you can get the dx from an expert, if it is deemed you fit.

Jus like pandas

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We were one of the families that were not getting a sustained benefit from IVIG and steroids.

 

All I can say is that I have know idea where we would have ended up if there were not other options to consider. I think that most of the infections, including strep and staph, can be addressed with 1 or so years of antibiotics, but the scary thing about lyme is that it is not easily treated with one antibiotic and the scarier thing is that my children both had the Lyme coinfection, Babesia, which is only really treated with an Anti Malaria drug. I am so very thankful for this forum and for the experiences of other parents because both of my children have seen such vast improvements with lyme treatment.

 

I have never really understood this debate. I think we all agree that it is important to get rid of strep and I think it is just as important to treat the lyme. We have been treating ALL of our infections!

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I have read countless times that negative strep titers do not necessarily rule out pandas. Many have posted that some kids don't make antibodies to strep but still may be infected. How is it any different when Lyme moms make similar statements about Lyme. These anti-lyme posts do a real disservice to parents on this board trying to figure out what is wrong with their child. Lyme may not be an issue for all of these kids but it seems more and more are finding out every week that it is. Many parents have posted great improvement once addressing Lyme and co-infections and some of you seem to continuously try to discredit them. It's sad because Pitands kids infected with Lyme may never have a chance to get well if infections are not treated properly. 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. We waisted an entire year on ivig and steroids. I only hope others can learn from my mistakes and that is why we continue to press parents to test for Lyme.

Here's a tidbit of our experience: Preschool son dx with classic Srep:PANDAS at age 2. Relatively managable until he has T&A just before 4th birthday. 2 wks after T&A MAJOR acute episode 9/2010. High titers ASO & Anti-Dnase. Starts treatment with Augmentin, BID. 6 wks. after acute episode gets Myco walking pneumonia. These titers have never decreased (the "old" have stayed high, the "new" are within normal range). 1/2011 discontinues Augmentin and starts on Omnicef, BID, as he plateaued. Significant decrease in symptoms lasts until April 2011, when he starts to demonstrate bigger "valleys" with more sigfnificant symptoms. Interestingly, Myco titers are still high at this point, but after testing every 4 months for over a year, his Strep titers plummet to normal. July 2011 tested for Lyme and Bart thru IgeneX. PRIOR to results, starts Augmentin, BID and Azith 1 x D to treat the Myco. Tests come back + for both Bart and Lyme. No change in treatment as the abx utilized are an appropriate treatment for all of the above. Within 2 weeks after starting this abx protocol, by mid August, my son is practically symptom free and continues to do very well. So, I guess I just wanted to share simple facts from my kiddo's story. Every child is different, but this worked for us. IgeneX is a quality, regulated lab. I do not think that Dr. B would utilize it if it wasn't. More information is good, isn't it? There seem to be variances of interpretation of what constitutes Lyme + between different doctors as well as the CDC. For us, regardless of the outcome of testing, the treatment remained the same and it's working.

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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.

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