has any one tested neg. thru igenex?

[momofgirls]

I do not understand your logic....strep and Lyme are infections both of which could trigger tics and OCD by the same immune response. Many pandas kids are infected with Lyme and that is why we post on this board. To separate based on what our kids are infected is not efficient because the information impacts so many. The Lyme board was created because some parents felt the Lyme topics complicated the pandas board unnecessarily. Any of the posts where i have cautioned use of steroids and other more aggressive pandas treatment were directed to those that had not ruled out Lyme. I would never try to 'persuade' someone out of a pandas diagnosis but only instead suggest they make sure they know with what infection they are dealing.

I really do not not understand why this is even a debate.

 

 

yes, please find us anti-lyme moms on the Lyme forum trying to persuade people out of a Lyme diagnosis.

[PowPow]

I think the issue is: (and here I am adding to the confusion)

when a parent posts on the forum that typical PANDAS treatments are not working--- then your kid might have lyme! If their WB is neg - try IGENEX. If the IGENEX if IND or NEG- you might still have it. How is anyone supposed to ever rule it out?

Maybe PANDAS or PANS or PITANDS treatments just are not working. You may treat the lyme (or myco p or strep or viruses, whatever) and your kid may just be still sick. I think this is a chronic, autoimmune condition. Some kids may be refractory to the current treatments.

If your child has an infection, by all means treat it.

I know that everyone on here has the best intentions for all our kids. However, the huge amount of doubt and stress that is added when a parent is afraid to give their kid what could be a life-saving (I am not exaggerating here!) dose of steroids is too much.

I speak as the parent of 3 children being treated for PANDAS. One was a clear cut strep case, one unknown trigger & one who had Lyme and Babesia WA-1.

I am adding nothing to the conversation-- I just wanted to point out that to the average poster on the forum-- this lyme testing question never ends! When would someone be satisfied with a negative test?

Edited October 16, 2011 by PowPow

[smartyjones]

anyone notice that the original poster of this question, a relatively 'new' person with 98 posts -- that everyone claims to be concerned about the 'new' people getting misinformation or correct information - has LONG since left the conversation admist all the bickering????

 

 

dandd -- i hope you got some support and answers you were seeking!

[momcap]

This thread is so far off topic. Sorry danddd! But let's face it, there is an ever-growing subgroup of PANDAS kids being diagnosed with lyme. My child has been diagnosed with both. I am certain he has both. His lyme western blot is positive. He has lyme symptoms. He's getting better on lyme treatment. But I am also confident he has PANDAS. His ASOs have been in the 500s for 2 years since having scarlet fever, with a baseline of 27. His CamK was 176, and his anti-dopamine 1 was four times higher than normal. He has obvious and severe exacerbations from strep. Something was always wrong (lyme?), but I can tell you the exact day things went from bad to really really bad (PANDAS?). I am praying that the lyme treatment will be sufficient PANDAS treatment. I've heard of some PANDAS children who have healed on antibiotics alone. So far it is working (no more vocal tics, huge decrease in OCD and germaphobia). But we take everything one day at a time.

 

I don't doubt PANDAS as a stand-alone diagnosis. I haven't read any posts on either forum say it isn't in the many months I've been here. I don't think that issue is being debated at all anymore, unless I'm totally missing something? But I have to ask the question - where am I supposed to post? I benefit from both the lyme and the PANDAS forums. Every once in a while I feel like I have something of value to contribute both here and there. But I feel unwelcome to post anything here because of my child's lyme diagnosis. I often write a post and then delete it because I'm not sure. I think I understand the aversion to the one particular post in this thread that contained third-party information, but there is a much bigger argument going on here and I don't know where that leaves people like me, who really do want to benefit from the information available for both disorders.

 

I HATE this line that is being drawn in the sand between lyme and PANDAS because I'm on both sides. I'm feeling forced to pick one side and keep all information about the 2 separate. But how can I separate the information when the illnesses are working together in DS8? I don't know which symptoms are from lyme, which ones are from PANDAS, and which ones are a combo caused by his particular collection of illnesses.

 

I still think we can all benefit from sharing our experiences.

[philamom]

Yes, I also feel my child is dealing with both PANDAS & Lyme, and I'm addressing it from all angles. I watch my daughter react to strep and I listen as she complains about the constant tingling in her arms and legs, most likely from the lyme. She was in the PANDAS range on the Cunningham test with all 4 anti-neuronal titers elevated. I just want to see all of our children healed - Period!!! They don't deserve this!

 

And sorry- I thought the original post was just asking if Igenex ever comes back negative. dandd- however your tests come back, I still hope you feel comfortable coming to this forum to seek answers, opinions, advice, exc. Hopefully, we are much kinder next time .

[PhillyPA]

Good morning Sunshine! Woke up. Grabbed some coffee and sat down to read this thread.

 

I have PM'd you on this Dandd. I will say that when in doubt go with the research scientists. I love research scientists. Especially the M.D./Ph.D kind. If you have lost faith in doctors, the research scientist will amaze you. It is these research people who really know their stuff.

 

Igenex test results have been researched by at least one research scientists that I know. The results were that this particular Lyme doctor/researcher does not use the Igenex lab. I have pm'd you his name and can do your own research.

 

Good Luck!

[sf_mom]

I was upset by the first response to this thread that implied Igenex was not a valid means of testing. I'll send you a PM providing some researcher name who doesn't like or believe Igenex testing. With probably some disclosure everyone is positive when tested by Igenex. I'm guessing on the PM message.

 

You are potentially deterring individuals from pursuing the very necessary treatment they need to get their child well. Igenex is only one of the first pass indications that might get them to the right Dr. for better evaluation and hopefully a treatment that "might" work. You know I've got people contacting me (and other Lyme parents) that have been sitting on positive or boarder line Igenex results paralyzed by information from PANDAS parents. For many of these people the PANDAS treatments have not worked at all (no positive result from hdIVIG), they are told to hang on or do more PANDAS treatments by some of you privately. "Potentially" more time will be wasted for theses children's recovery and that is sad. I am absolutely perplexed by this position. For some, not all it is so much more than just strep. This has happened not just once or twice but many, many, many times and I am not the only one getting these PMs requesting help. There a lot of people that read these forum and do not post.

 

I am personally suffering from severe forum fatigue. I can no longer handle the amount of time it takes to help these parents that are confused, scared and their kids are not getting well. I would love to move on. My family is getting well. I have a strong supportive community dealing with the same issues. BUT, when I get these message, I can not move on because it is child's well being.

 

The Lyme et al issues should no longer be a debated. I am pleading with you to stop and be supportive of an alternative directions and testing whatever the direction rather than debunking specific tests that could potentially deter again. I PROMISE you I will be happy to leave the PANDAS forum, if you can get on board helping rather than debating. It is those very boarder line Igenex results that have gotten many of us on the right path to recovery and you can call it whatever you disease you like. It is true, Lyme may not be the right path for everyone but it just might help some.

 

I did post the third party story because I thought it was warranted for those of you to understand how tragic this might be for a CHILD truly with Lyme. AND, you are upset by that... I get that but that is just one of many tragic stories of what can happen when Lyme is not properly diagnosed. I see the children in wheel chairs. Please, Please, Please stop. Suspend belief, start helping and will happily leave the PANDAS forum. Its a promise.

 

-Wendy

 

Edit: Additionally if any of you would like to continue the debate with me personally I ask that you do it privately... You are welcome to PM me with your frustrations or even call me. BUT, I would like a truce on the topic and once again request the thread be locked.

Edited October 16, 2011 by SF Mom

[PhillyPA]

Wendy, forgive me, I just skimmed your post so if I am saying something that doesn't ring true, it is my fault.

 

Let me make my position clear so as not to agitate parents of kiddos who have done well on Lyme treatment. I am a believer in Lyme disease. It is a very real and potentially devestating disease.

 

I only offer to the group a blip of research on this particular subject. Everyone can take research and pick and pull whatever they deem fits their situation. However, to not offer up research information(privately) that I am aware of, seems counter productive to everyone's search for answers and the truth. I am sure everybody's truth will resonate within their soul, so take it for what it is.

 

Wendy, I am sorry that you are exhausted. I don't mean to add to it. But - I must speak my truth.

[sf_mom]

I take no offense. I want your help in only pointing people in a direction that "might" help. I speak my truth too.

 

Edit: I will say it again. "It is those very boarder line Igenex results that have gotten many of us on the right path to recovery and you can call it whatever disease you like. It is true, Lyme may not be the right path for everyone but it just might help some"

 

-Wendy

Edited October 16, 2011 by SF Mom

[Johnsmom]

Maybe ACN should create a new group called Lyme/Pandas forum. This debate has kept me from posting on the PANDAS forum because I know SOMEONE from the Lyme side will hijack it!

 

 

 

 

 

 

I was upset by the first response to this thread that implied Igenex was not a valid means of testing. I'll send you a PM providing some researcher name who doesn't like or believe Igenex testing. With probably some disclosure everyone is positive when tested by Igenex. I'm guessing on the PM message.

 

You are potentially deterring individuals from pursuing the very necessary treatment they need to get their child well. Igenex is only one of the first pass indications that might get them to the right Dr. for better evaluation and hopefully a treatment that "might" work. You know I've got people contacting me (and other Lyme parents) that have been sitting on positive or boarder line Igenex results paralyzed by information from PANDAS parents. For many of these people the PANDAS treatments have not worked at all (no positive result from hdIVIG), they are told to hang on or do more PANDAS treatments by some of you privately. "Potentially" more time will be wasted for theses children's recovery and that is sad. I am absolutely perplexed by this position. For some, not all it is so much more than just strep. This has happened not just once or twice but many, many, many times and I am not the only one getting these PMs requesting help. There a lot of people that read these forum and do not post.

 

I am personally suffering from severe forum fatigue. I can no longer handle the amount of time it takes to help these parents that are confused, scared and their kids are not getting well. I would love to move on. My family is getting well. I have a strong supportive community dealing with the same issues. BUT, when I get these message, I can not move on because it is child's well being.

 

The Lyme et al issues should no longer be a debated. I am pleading with you to stop and be supportive of an alternative directions and testing whatever the direction rather than debunking specific tests that could potentially deter again. I PROMISE you I will be happy to leave the PANDAS forum, if you can get on board helping rather than debating. It is those very boarder line Igenex results that have gotten many of us on the right path to recovery and you can call it whatever you disease you like. It is true, Lyme may not be the right path for everyone but it just might help some.

 

I did post the third party story because I thought it was warranted for those of you to understand how tragic this might be for a CHILD truly with Lyme. AND, you are upset by that... and I get that but that is just one of many tragic stories of what can happen when Lyme is not properly diagnosed. I see the children in wheel chairs. Please, Please, Please stop. Suspend belief, start helping and will happily leave the PANDAS forum. Its a promise.

 

-Wendy

[sf_mom]

The parent who asked the question of this topic suffers from Chronic Lyme. The child's PANDAS treatment are not helping as hoped. This could easily be congenital Lyme. They will be "LUCKY" if Igenex provides any indication of LD. There are equally tragic co-infections with LD that can be passed congenitally. A child with congenital Lyme often does not make antibodies to the bacteria because the body does not recognize the bacteria's as foreign. Sometimes, these individuals may need to pursue alternative testing to determine if Lyme et al is involved. I should know. This is a serious illness with serious consequences if treated improperly.

 

I am trying with all sincerity to get people to stop debunking the notion of Lyme et al's involved with PANDAS children and specific tests that are "helping" to determine if its an issue. A responsible LLMD will do further testing to determine if "Lyme is more likely or less likely". The information being passed along privately is really hurting some by created doubt. Some of these children are tragically positive for Bartonella and Babesia both known to cause OCD. These parents are still hanging their hat on the PANDAS treatments working. This is the sad state of affairs.

 

Again, I will happily go away if everyone can get on board. This is not sarcastic nor passive aggressive on my part. I would like a truce on this topic and debate and to start helping to point people in the direction of "maybe" pursuing a treatment that will help when PANDAS treatments are not. I do not wish Lyme et al on any family. I do not want to be here posting either. I am sorry if you are annoyed by my posts.

 

-Wendy

Edited October 16, 2011 by SF Mom

[P_Mom]

"You know I've got people contacting me (and other Lyme parents) that have been sitting on positive or boarder line Igenex results paralyzed by information from PANDAS parents. For many of these people the PANDAS treatments have not worked at all (no positive result from hdIVIG), they are told to hang on or do more PANDAS treatments by some of you privately. "Potentially" more time will be wasted for theses children's recovery and that is sad. I am absolutely perplexed by this position. For some, not all it is so much more than just strep. This has happened not just once or twice but many, many, many times and I am not the only one getting these PMs requesting help. There a lot of people that read these forum and do not post."

 

 

SFMom....just want to clear something up that I believe you may be missing. We have heard numerous times of the pm's you get from people needing help.....confused by PANDAS posts, etc. What I think you are missing is that many of us PANDAS parents get the same kind of pm's. Pm's from people totally exhausted from the Lyme posts.....pm's where they were wrongly led down the Lyme path and their kids did not get well.....some getting worse. PM's thanking us PANDAS parents who continue to post our stance on Lyme and our endeavor to help them keep their sites on PANDAS treatments. Pm's from parents paralyzed by posts from Lyme parents.....sitting on PANDAS treatments that could save their kids life because of posts from Lyme parents. Many, many have had failure with Lyme treatments....they don't all publicly post. And pm's from PANDAS parents who have said once they posted their PANDAS strory....their personal message indicator lit up like a light bulb from LYME parents urging them down the Lyme route and to hold off on life saving treatments such as IVIG and especially steroids. Wasted time for these kids recovery...and, yep...very, very sad. I, too, am perplexed by this position. When people post on the PANDAS board...they are looking for PANDAS advice. When the Lyme folks jump in...that is when they get all confused and hung up. The Lyme forum is a click away if they want Lyme advice. Right? Many, many of us get pm's....you are not the only one, as you stated, so, please don't think that pm's aren't going around to us PANDAS moms that aren't so, um, Lyme freindly. C'mon....neither one of us is naive enough to think otherwise. It goes both ways. So, I ask that you respect the PANDAS forum (yes, you can still send your pm's...nothing we can do about that)....and I, for one, will respect the Lyme forum....which I have been doing.

 

Thank you.

 

 

(See above in Johnsmom's post. She doesn't want to post here because she knows it will be hijacked by a Lyme parent. That shouldn't be. Lyme and PANDAS were separated to avoid just this. This is what we are talking about!)

[P_Mom]

PANDAS16.....sorry to everyone...but, that make me laugh. "Frankly my dear...I don't give a damn."

 

SFMom...I am truely sorry, but, I, for one, will not jump on board with your beliefs. Sorry. And of course, you don't have to jump in my boat. I feel I will be doing more harm then good if I do "get on board."

 

 

"This could easily be congenital Lyme. They will be "LUCKY" if Igenex provides any indication of LD. There are equally tragic co-infections with LD that can be passed congenitally. A child with congenital Lyme often does not make antibodies to the bacteria because the body does not recognize the bacteria's as foreign. Sometimes, these individuals may need to pursue alternative testing to determine if Lyme et al is involved. I should know. This is a serious illness with serious consequences if treated improperly."

 

 

 

These are the blanket statements made by LLMD's, and subsequently Lyme parents, that I was referring to in my earlier post. If you pay attention...these sweeping statements are made all the time in the Lyme community. Where is the research to back this up???? There is NONE. No research studies or good hard evidence that the above is even true...just a lot of "my LLMD said"......"this book said"...etc. Again, I believe it is an attempt to come up with something to explain the unexplainable.

[PhillyPA]

Here is a thought...What if it is not pandas or lyme? What if it is NMDA encephalitis? Or auto-immune encephalitis? Or Wilson's disease? Or the 30 other main stream diseases(this includes Lyme and pandas) that have neuropsych implications with organic cause.

 

Check everything out. Leave no stone unturned.

[PowPow]

So- help me PhillyPA-- who do you find to test all this? we did get wilson's checked out; treated for CDC+lyme & babesia (Quest labs); the gamut of every available PANDAS treatment.

 

I want no stone unturned. How do we find a doctor willing to turn over every stone & also who even knows what the stones are?

 

Can you tell me some more (or even direct me) to other possible diagnoses?

Edited October 16, 2011 by PowPow