Lyme Disease and the Cunnigham Study

[EAMom]

AND its true my older son is currently 100% with no TICs/OCD and even his stomach issues have resolved within the last week due to the addition of a cyst buster antibiotic 'I think'. However, I will add that we never followed Dr. K's antibiotic protocol. We went up and down on the azithromycin 250 m.g. to 500 m.g. Intuitively, I knew my son always did better on the higher dose of 500 m.g. and we kept him at that dose since last Feb. In May, I was getting nervous by the higher dose so decided to replace 250 m.g. of Azithromycin with 600 m.g. of Omnicef (so he was then on a combo of antibiotics) and my son began to shed his remaining symptoms of mild infrequent throat clearing and rubbing his nose (30 days in total). Because we were almost 5 months post IVIG I strongly felt that the antibiotics switch helped tremendously and indicated 'something' was still present.

 

 

I have been asked this questioned many times privately. I do believe the hdIVIG helped our son tremendously... I have never said otherwise. After his third hdIVIG to OCD stopped almost over night. BUT, we were always 'kind of following' a LYME like protocol in terms of antibiotics. So now it is difficult to say what worked. The IVIGs or the antibiotics. For my girlfriends son the IVIG treatments were very helpful for about 8 weeks and then he would start to regress and it was the right COMBO of antibiotics that have brought him to the 90% range in the last 8 weeks.

 

 

But just b/c a child gets better on a high enough dose (or a different combo) of antibiotics post IVIG doesn't mean lyme is necessarily a player...it could STILL just be PANDAS (take Worried Dad's son for example, who finally got better on Saving Sammy doses of Augmentin XR) or a PANDAS/Pitand where the new antibiotic is finally "getting" some other long term infection, if not strep hiding out somewhere.

[momofgirls]

I re-read your post pmom and you did say that there is no proof any of it works. You also said pandas is not lyme and lyme is not pandas. You did aknowledge that a pandas flare could be exacerbated by lyme. I am suggested that anything could trigger the initial auto-immune response. I am sure that will be a debate too but again no one really knows. I really don't begrudge your conviction and feel this is all a beneficial discussion so no hard feelings here. It does seem that certain people have been really harsh towards wendy for posting so much about lyme. I do think you have implied that she is sending parents down the wrong path in testing for lyme.I think faith even called her irresponsible. I rarely post on here because I am always questioning my own decisions and am not completely confident in this stuff but so far my daughter has really been helped. I just feel its important for parents to get the whole picture.

[P_Mom]

I said "undetermined" path....not wrong path. We need to be careful not to put words in each other's mouths.....we need to read all posts carefully.

 

"I just feel its important for parents to get the whole picture."-Mom of Girls........

 

My point exactly!!!!!

[KeithandElizabeth]

I disagree!!!! Lyme can be one of the microbes that can cause PITANDS symptoms. My son initially only had PANDAS symptoms with strep throat and then we found out that he had lyme disease. I believe that lyme, mycoplasma, bartonella and or strep can cause PANDAS or PITANDS. Just because is your initial trigger, it does not mean that there is not an additional underlying infection.

 

I have to say that many families are not doing well with the typical PANDAS treatment and finding out what else could be causing these PANDAS symptoms and having an additional treatment option can save the lives of many children and their families. It has saved our family when we were in despair!

 

So, in my mind these are not separate illnesses and lyme is JUST one other microbe that can create OCD and TICs and basically PANDAS symptoms. Why are we having such a hard time with this topic?

 

I have to say that I finally have my son back and I only have this forum and its information on PANDAS and then lyme disease to thank. So lets keep up the great debates so that many other children can be helped, whether it be that they discover lyme disease, or strep only, or mycoplasma.

 

Elizabeth

[P_Mom]

"I disagree!!!! Lyme can be one of the microbes that can cause PITANDS symptoms"

 

Nobody disputed that...we all agree on that!

 

EAMOM....I have said that before regarding improvement on high dose,multiple antibiotics post IVIG. It doesn't rule in Lyme...*nor rule it out.

Edited August 17, 2010 by P.Mom

[momofgirls]

This whole journey is and undetermined path. We are just saying to check for lyme. There are kids diagnosed with tourettes and if they are advised to test for strep is that an undeterminded path?

 

I said "undetermined" path....not wrong path. We need to be careful not to put words in each other's mouths.....we need to read all posts carefully.

 

"I just feel its important for parents to get the whole picture."-Mom of Girls........

 

My point exactly!!!!!

[P_Mom]

Yes, it is an undetermined path... still..... but,perfectly reasonable to check for strep in a Tourettes/OCD case. I NEVER said not to check for Lyme....which is also an "undetermined path." I have said to check for it multiple times in my posts...my kids have been checked numerous times. But, it is easier to check for strep than Lyme. Some of these Lyme tests can really put a family out.

[momofgirls]

Yes check for lyme but check properly. My daughters western blot was negative twice when tested through quest. It was positive via igenex because the CDC has removed fingerprint bands from the western blot used by quest, lab corp etc...these bands were removed because a vaccine was in development. They knew if the bands remained on the basic western blot then anyone who received the vaccine would appear positive. Therefore a disclaimer was added to the bottom of the test stating that lyme is a clinical diagnosis and lab results alone are not enough to rule out lyme. It says something like that anyway. Igenex test includes the fingerprint bands for lyme.

I know its expensive but compared to the cost of psychiatric care and special tutors its worth it. I think if you start with just the igenex western blot it costs about $300.

 

 

Yes, it is an undetermined path... still..... but,perfectly reasonable to check for strep in a Tourettes/OCD case. I NEVER said not to check for Lyme....which is also an "undetermined path." I have said to check for it multiple times in my posts...my kids have been checked numerous times. But, it is easier to check for strep than Lyme. Some of these Lyme tests can really put a family out.

[momofgirls]

Last post on lyme...for now. I'm tired but for the record, I do not believe all pandas is lyme. I do think a lot more than we know may be complicated by lyme or even lyme by itself. Did anyone else notice the map buster posted showing the distribution of pandas cases? The northeast seemed to be loaded with pandas cases. Faith I hope you have read some of these posts and given it some thought. I hope you test your son for lyme via igenx because I've read some of your posts and frankly lyme seems very possible for him. You do live up here in the northeast don't you?

[EAMom]

At home (I don't think he posted it) Buster plotted against Lyme density (or whatever you call it), as well as against population density....he found that PANDAS cases correlated with population density...but not Lyme density. There are lots of PANDAS cases in the Northeast partly b/c there are lots of people living in the Northeast (I also suspect there are more educated parents/doctors diagnosing PANDAS in the Northeast who make it to this forum).

Edited August 17, 2010 by EAMom

[ajcire]

I have been typing and deleting fully aware I shouldn't post to this but what I got out of Faith's post goes back to a time when sfmom referred to getting our children back to 100%. Sure people will say they didn't go do ivig just because of something they read here but those posts play on people's emotions and fears. I remember reading it and taking from it that if I didn't try ivig I was not giving my child 100%. Is that what sfmom meant to say? Maybe not. In fact, my child is so very mild that I remember asking what about a kid like my kid and the response I got was basically that a good mother would not accept anything less than 100% and that I would see differences I didn't even realize were pandas related after ivig. (Yes, not in so many words but that was the gist of it). I think the frustration comes not because sfmom is looking into lyme or even talking about it but more because she had 100% confidence in ivig and didn't hold back on suggesting it was the only route to go for a cure. I know it would be foolish to make a decision based on a message board but take a tired worn out parent who doesn't know what else to do... now watch them spend $10,000 (or more from what I am understanding) on IVIG only to find out that well, it might have worked better if...... YES, medicine changes all the time, when we know better we do better but I think it's important than to not post our believes with such conviction when the reality is that nobody really knows.

 

 

 

I was very appreciative of some lyme suggestions I received from Lymemom at one point regarding myself. Where I live, lyme is certainly a real threat. I feel confident that I don't have lyme but I definitely appreciated the advice and I most definitely took advantage of her wealth of information and used it to help me ask questions to a dr. I put my trust in. Lyme information being given itself is not the concern.

Edited August 17, 2010 by ajcire

[justinekno]

I get that if you have a clear documented strep history, the symptoms plus a PANDAS range Cunningham test, then you can feel pretty comfortable that you are dealing with PANDAS. BUT didn't Dr. Cunningham acknowledge that Lyme can produce the PANDAS range on the CAMKinase tests? If so, how can you tell which is which if you only have the symptoms and a high CAMkinase number? I know she thinks that there is the possibility of strep still being the culprit with these kids and the strep tests just aren't showing it but that's still not proven yet. Wouldn't this scenario be when you would want to rule out other infections?

 

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.

 

[P_Mom]

HEY...SOMEONE GETS WHAT I WAS TRING TO SAY!

 

Thanks, Ajcire...well said...now, Off to Fla. (armed with PenVk, Augmentin, and Steriods....you knever know! )

[thereishope]

I need a brown hair emoticon with gray roots showing Hey...we gray young in my family

 

 

 

Why isn't there a grey haired emoticon?

[Kayanne]

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.

I just realized another reason why I can justify NOT exploring Lyme in my daughter's case...our asymptomatic Cam K score was low--112 it overlapped with normal.

 

PMom, didn't one of your sons have the same score?

 

I don't begrude anyone posting about Lyme, sometimes, I just wish the TONE was less severe. It is the same tone that was taken a while back about IVIG. Sadly, I think a lot of the hard feelings from back then have been dredged up again--from both sides.

 

We are all parents trying to do the best for our children, and any information is appreciated. We PANDAS/PITANDS parents have to appreciate that not ALL cases of OCD and TS are caused by infection, and the tone of the recent Lyme posts have been very definitive (borderline insistent) that Lyme is the underlying cause of it all. IT IS VERY POSSIBLE TO HAVE THE SAME SYMPTOMS WITH DIFFERENT CAUSES -- just google the term "chorea" and see how many different kinds there are.

 

Many of the people who come to this forum are scared, worried, trying to find common threads about their children...trying to glean if they will get better, and taking a hard line approach about tests and treatments just adds to their anxiety. It is OKAY to tell people to get an Igenix test for lyme, it is OKAY to tell them to try to get everybody in the family cultured, it is OKAY to tell them about the things we have learned that have helped our own children. However, we need to also take a step back and respect when a parent states that they believe they have explored a certain possible trigger, or they don't want to try a certain treatment.

Edited August 17, 2010 by Kayanne