Lyme Disease and the Cunnigham Study

[justinekno]

She is also looking into Lyme being transferred in utero. She was not aware of the possibility until recently. It's so nice how open she is to new ideas and theories!

 

Madeleine Cunniham did tell me last week that Lyme does test in the CamK range. She is conducting futher research into this with other LLMD's. To be continued..

 

[philamom]

Wendy-

I just want to again say THANK YOU for posting your experiences with us!!!! I appreciate hearing what has/hasn't worked for YOUR children. I never felt pushed into any treatment by you or any parent on this forum. We have gone thru 3 IVIG's with shedding of symptoms with each one. I am SO glad I did them! Is my daughter 100%--NO, but it's way better than before. Is the reason she's not at 100% due to underlying Lyme, new Lyme infection, co-infections...that's what I'm searching into. Please Wendy--DON"T be discouraged to posting on this forum. I so appreciate opinions from all angles! Everybody's experiences to help complete the puzzle--I can decide how to put it together!

Melinda

[justinekno]

I agree. I think you take what you want away from this forum. I read everyone's posts, do my own research and then bring it all to our dr(s) for the ultimate decision on what our next step should be. It is an evolving process and I am still trying to understand what my son's overall diagnosis should be. I thank this forum for stirring up the Lyme debate as I would have never connected my own inproperly treated Lyme diagnosis (bulls eye rash) prior to conceiving my son. Who knew that was "part" of the puzzle. It may be the whole puzzle, we are still traveling that road but I'm hopeful that it's one step closer to healing, which like the rest of us, is our ultimate goal. I hope everyone keeps posting and doesn't feel pressured into stopping because I really appreciate the various ranges of views and experiences.

 

Wendy-

I just want to again say THANK YOU for posting your experiences with us!!!! I appreciate hearing what has/hasn't worked for YOUR children. I never felt pushed into any treatment by you or any parent on this forum. We have gone thru 3 IVIG's with shedding of symptoms with each one. I am SO glad I did them! Is my daughter 100%--NO, but it's way better than before. Is the reason she's not at 100% due to underlying Lyme, new Lyme infection, co-infections...that's what I'm searching into. Please Wendy--DON"T be discouraged to posting on this forum. I so appreciate opinions from all angles! Everybody's experiences to help complete the puzzle--I can decide how to put it together!

Melinda

Edited August 16, 2010 by justinekno

[PacificMama]

Like Wendy, most people here are well intentioned parents who only hope to help their children, and maybe along the way help other parents do the same. A public flogging seems a little harsh. I admire Wendy's honesty in saying: I'm constantly learning... it's an evolution.

 

I'm sorry that some people are sick of the lyme postings. All any of the lyme parents wanted to say was "consider there may be other infections involved, so please take the time to rule them out, or rule them in".

 

Wendy, regardless of how things play out for your family, know that you have helped many people here.

 

Mary

[Kay]

Here is my 2 cents. I understand the frustration of thinking you are all set with the treatment you are doing and then you read a post and there is one more thing to think about and one more doctor to contact and one more blood test to be run.

 

It's unsettling, BUT, without all of us posting our different ideas and our different treatments and different causes, where would we be? If someone had not been brave enough to post the first Pandas blog, I would not have found this site and the doctors we were dealing with were not thinking Pandas ever and I doubt it would have ever come up.

 

I know it can be confusing and I feel your pain but like others have said. I read it all, I pull from what I think fits our situation and then I bring it to our Docs and say, what do you think?

 

I had thought way back Lyme for us when this all started. She was tested twice with negative results (quest) (we live in Lyme in the woods, yikes!) So I put that away and went on with the Pandas because she fits that so well right up to the exposure of strep from a friend and her biggest exacerbation of all.

 

She has high Igg Mycoplasm Pneumonia and I am still battling with trying the Biaxin for that. I have picked brains all over the place (on here) trying to see if we should do it. I get yes, yes, yes from everyone and it has still been months before we think we have finally decided to try that as well. Same goes for the Lyme. I finally got the test kit the other day, and here is the great thing about this kit. You call up and order what you want they send it, there is no money sent until you send it back, so if we decide for some reason not to draw for that there is no loss of money, you can wait and decide for when you are ready.

 

We are right now at about 70% with augmentin xr, most days are good. We still have a ways to go, is it the mycoplasma? Could it be the Lyme? I will only know once we test and try treatments. Afraid of messing with stuff that is why it has taken us so long to decide to do something different.

 

I thank everyone here for all their post because like I said before without them we might just accept that 70% and I do not want to.

 

A word about post that are in favor and or not in favor of anothers post. That is why we are here. We learn from the post that make us question one way or the other. One person is confident while the other may not be and ask the questions the rest of us want to but can't. So ALL post have a purpose in my world.

[Chemar]

She is also looking into Lyme being transferred in utero. She was not aware of the possibility until recently. It's so nice how open she is to new ideas and theories!

 

Madeleine Cunniham did tell me last week that Lyme does test in the CamK range. She is conducting futher research into this with other LLMD's. To be continued..

 

 

 

we have a family at our church that have learned, after years of misdiagnosed illness, that the mother had Lyme all along (probably 20+years) and that the 2 kids (now teenagers) likely got it congenitally from her

[Megs_Mom]

It's always interesting on site where parents are looking for answers for their children. It can be very passionate, and sometimes controversial, especially when we are bucking the conventional advice, and looking for new answers for our children. One of the things I love about this site is that a lot of ideas are tossed out there. We are VERY slow to try new things, because we are in pretty good shape right now. But we can't stop searching for answers, and I appreciate so much, hearing about the paths that others are on.

 

I often reject that information due to other experiences we have had. And then sometimes, a year later even, I may go back to it and think about it with a new perspective. We evaluate everything with a careful thought of "will this harm her in any way" - it makes us slow to the best answer sometimes. But when we do reach it, we do so with confidence that it is the best thing to try at that time. There was a time that I was scared to death of antibiotics. Now I thank the heavens that we found a doctor brave enough to try this for my daughter - and for the best friend that kept encouraging me to take a risk, and who helped me evaluate that risk through research and facts.

 

I don't think I ever take information here at face value. There was even one post recently that I wondered if it was a salesperson! But over time, you learn to evaluate the posts and take some value from each one.

 

 

My best friend and I were just talking about this forum, and how open it has been to other illnesses beyond strep. I think we are both looking for a infection/inflamation based neuropsychiatric illness - and we find both support and answers here. We are both used to being yelled at on another site, for suggesting that a child with sudden onset OCD might have PANDAS. We have learned not to take it too seriously, and to try to help the best we can, without being too emphatic. We don't know it all, that is for sure - but each answer that we have been blessed to find has made our homes happier places.

 

Thanks for sharing - your passions, your doubts, your fears. It's what makes this forum a home.

[thereishope]

Gee, I wonder what post that was But, no that was not a salesperson. I can assure you.

 

 

 

I don't think I ever take information here at face value. There was even one post recently that I wondered if it was a salesperson! But over time, you learn to evaluate the posts and take some value from each one.

 

[Megs_Mom]

Gee, I wonder what post that was But, no that was not a salesperson. I can assure you.

 

 

 

I don't think I ever take information here at face value. There was even one post recently that I wondered if it was a salesperson! But over time, you learn to evaluate the posts and take some value from each one.

 

I knew you would comment! Yep, I figured that was just a really passionate parent, sharing. We all have our own way. Some days, I just feel really OLD! Why isn't there a grey haired emoticon?

[momofgirls]

Faith you seem so outraged by Wendy's posts on the lyme and pandas connection. Do you begrudge her for leaving no stone unturned in seeking help for her kids? You've been quite a consistent skeptic on this forum for some time and that is fair enough. We all debate on here everyday but I am grateful to people who have shared all of their experiences as personal as they may be. I don't think wendy ever said ivig did not help her son. She is now just advocating that all parents rule out ALL infections before assuming strep is the only issue. Makes sense to me. And you go on to say that 'pandas is not lyme and lyme is not pandas'. Hello!!! Parents talk about exacerbation due to viruses, allergies, and strep exposures all the time. What do you think would happen to a kid with pandas if they get lyme disease? The key here that wendy is trying so hard to get accross is that lyme treatment is intense and requires and experienced lyme doctor to undetstand the complexity of co-infections. Treating these infections layer by layer with multiple antibiotics is much more complicated than prescribing the prophylactic abx typical given to a kid with pandas. I can attest to the fact that 250mg of azyth won't cut it alone.

Wendy's son is doing fabulous and I don't think it is fair of you to judge her for being aggressive and brave in this battle. I'm the friend that lives 20 min from lyme connecticut and I may have to fly to SF to break her fingers yet for posting on this forum because I know it takes a lot out of her. She believes in what she is doing and is only trying to share what she has learned. I hope Wendy's kids don't have lyme but if they do I know she will kick it too!

wendy,

you give a lengthy response, i'm not sure I totally understand, but I'll try. my feeling is that I don't understand if your child is so much better, why are you taking the chance of giving him other abx and such. You have been very vocal and adamant about ivig and pandas here on this board. I think what I am saying is that you may be jumping the gun on this and sening alot of folks scurrying around for no good reason. Lyme is not pandas. pandas is not lyme. I dont' care what anyone thinks re co-infections, yes, they could be at play. But my point is that you have given out alot of information re ivig, even when I was questioning it. and now you are going into this lyme thing and feeling like there is something else for your kid or someone else's kid? please forgive me, but there is enough information about lyme here on the forum for those that would like to persue it. I feel you are now giving out alot of staunch information re lyme, the same as you did for ivig. Is your child recoverd or not? i still don't know... I am still way confused as to what your child's dx is and if ivig is the proper treatement? how do you even know that ivig does not make it worse? you are correct in saying to check out other things before doing ivig, but you did not say that months ago re ivig. I think parents should not send others on a wild goose chase unless they are sure of what is going on. sure, everyone give ideas and ask for advice, but I am left very confused on your children's cases and your beliefs about ivig and pandas. 98% better? you need more than that? i'll take it, pass it over here please. All these meds you are comfortable giving your child? how do you know it is not the problem? Its one thing to try things on your children but I do wish you would be more responsible and not steer others that way until you know for sure what and how these meds fare on your child. I mean no disrespect, but there are alot of desperate parents here, and many are willing to follow the crowd, especially when they believe the person who says it knows what they are talking about.

[P_Mom]

Lyme IS NOT PANDAS and PANDAS IS NOT LYME. Dr. Cunningham spoke of it...they are two, distinct conditions! Could a child with PANDAS have a flair if they contracted Lyme?? Sure....but it does not make the two conditions the same. PANDAS is not the flu, either.

A PANDAS flair is the consequence of strep...and myco, and the flu...etc.

 

I think, before posting with such conviction on what is going on here with our kids (thus, sending newbies and vunerable parents on a undetermined path)) one should go through all the testing to determine what is indeed going on. I think that is what Faith is trying to say.

 

We went through it already with IVIG.....

 

I am NOT begrudging anyone for doing all that is necessary to help their kids and find out what is wrong.......

 

Not everyone can afford the VERY COSTLY IVIG and Lyme tests......but, many are spending their last dimes to get them.....all without adequate proof it even works...or that Lyme is even involved!!!! Some have sold homes......

Edited August 17, 2010 by P.Mom

[dut]

SFMom - IMHO, please keep posting.. I do understand peoples' frustration - you think you've got IT on the run and then someone throws another spanner in the works.. myco, allergies, Lyme.. but if it weren't for those spanner throwers, all of our kids would be suffering in silence or relegated to SSRI's.

 

I'm happy with vocal parents, I don't need to believe or blindly follow all advice that I'm given, I can choose to sift through and take only that advice that I feel applies to my situation. I also get the issue of newbies being sent on wild goose chases but there's the excellent pinned threads for the basics and these more involved discussions can only add to the knowledge base.. nobody, not even the experts have the answers, so until somebody does, I'm happy to hear all comers.....

Edited August 17, 2010 by dut

[momofgirls]

This illness is tough for families emotionally and financially. I think we can all agree on that but pmom are you suggesting that there is no proof that ivig is not at least beneficial in treating pandas? Is it always a cure? No of course not but there is plently of evidence that is does work. If it doesn't then maybe think about a chronic infection preventing the ivig from doing its job. That is Wendy's point. Are you implying that appropriate lyme treatments are not proven necessary in the treatment in chronic lyme? If everyone on this forum waited for 'proof' our kids would be grandparents by the time all of the research was complete and nicely documented. By the way how do you know that a neuropsychiatric auto-immune disease is ONLY triggered by strep? No one knows.I personally view it as an auto-immune response to an infection not specfic only to strep. Again know one knows how it starts in each child. Even Dr Cunningham is the first to say that they just don't know. I believe her research began with strep but didn't she recently say that she believes lyme could trigger a high cam k? Maybe I misunderstood but I asked Dr Cunningham that question last year...if there was anything other than strep that could trigger the response. Her answer was...it is possible and they have not studied all infections in relation.

IVIG and lyme testing is expensive yes you are right. I don't think Wendy is trying to scare people into these tests and treatments intentionally but there are a lot of kids on this forum who are not well. I bet those parents want to hear about how to properly rule out all infections before assuming strep is the only microbe at play. Obviously if a parent is satisfied with their childs progress and don't think lyme is at play...then don't test for it but I was on the fence a few months ago. My daughter was doing really well after ivig but not ALL better. I had her tested and she was positive for lyme. Adding the additional antibiotics have made the difference. I have never found a tic on her but living in Connecticut made me wonder. It has been almost a year for us in treating this disease and we have made mistakes and learned from them but my daughter is doing really well now. She is not perfect but getting closer. I want that for all of us and so does Wendy. I don't think others should be offended by that kind of conviction.

 

Lyme IS NOT PANDAS and PANDAS IS NOT LYME. Dr. Cunningham spoke of it...they are two, distinct conditions! Could a child with PANDAS have a flair if they contracted Lyme?? Sure....but it does not make the two conditions the same. PANDAS is not the flu, either.

A PANDAS flair is the consequence of strep...and myco, and the flu...etc.

 

I think, before posting with such conviction on what is going on here with our kids (thus, sending newbies and vunerable parents on a undetermined path)) one should go through all the testing to determine what is indeed going on. I think that is what Faith is trying to say.

 

We went through it already with IVIG.....

 

I am NOT begrudging anyone for doing all that is necessary to help their kids and find out what is wrong.......

 

Not everyone can afford the VERY COSTLY IVIG and Lyme tests......but, many are spending their last dimes to get them.....all without adequate proof it even works...or that Lyme is even involved!!!! Some have sold homes......

[P_Mom]

My gosh...I NEVER said IVIG was not beneficial to PANDAS! Geez......

 

There are many studies to date that document that prolonged courses of antibiotics in Chronic Lyme do not improve symptoms. Sometimes...the Lyme is cleared and the autoimmune response remains....hence....continued symptoms. Can it be beneficial? Sometimes. Worth a shot.

 

Only triggered by strep? Please read my post again. I mentioned, myco, flu, strep, ETC!

 

I am not begrudging her (Sf Mom's ) conviction (I even stated that) only presenting another side. Isn't that what this forum is for?? Is my conviction the one being "begrudged?"

 

Maybe we all need our fingers broke!!

Edited August 17, 2010 by P.Mom

[EAMom]

Kayanne...I completely agree that I wouldn't be concerned about Lyme in your dd, as she significantly improved with a longer (not just a 5 day burst) course of steroids (and antibiotics). I would think if Lyme were a factor, the steroids would have made things worse, not better.