Update & Dr Request

[justinekno]

Well it looks like we are looking at Lyme and PANDAS. My son's IGenex test came back positive for Lyme. Thanks to some suggestions from this board, I started investigating whether my son could have gotten Lyme in utero. I had Lyme (classic bullseye rash) a few years before he was born but I was treated with only 2 weeks of Doxycyline. My son is currently on Biaxon but we need to see a Lyme dr to start an antibiotic regimen for chronic Lyme. Does anyone know of a Lyme dr in the New England/NY area? If so, can you please PM me? I did request names form the ILADS website and have left messages with those dr.'s but no response yet. Thank you.

Edited August 13, 2010 by justinekno

[JTs-Mom]

I sent you a PM.

 

Well it looks like we are looking at Lyme and PANDAS. My son's IGenex test came back positive for Lyme. Thanks to some suggestions from this board, I started investigating whether my son could have gotten Lyme in utero. I had Lyme (classic bullseye rash) a few years before he was born but I was treated with only 2 weeks of Doxycyline. My son is currently on Biaxon but we need to see a Lyme dr to start an antibiotic regimen for chronic Lyme. Does anyone know of a Lyme dr in the New England/NY area? If so, can you please PM me? I did request names form the ILADS website and have left messages with those dr.'s but no response yet. Thank you.

[Kay]

Well it looks like we are looking at Lyme and PANDAS. My son's IGenex test came back positive for Lyme. Thanks to some suggestions from this board, I started investigating whether my son could have gotten Lyme in utero. I had Lyme (classic bullseye rash) a few years before he was born but I was treated with only 2 weeks of Doxycyline. My son is currently on Biaxon but we need to see a Lyme dr to start an antibiotic regimen for chronic Lyme. Does anyone know of a Lyme dr in the New England/NY area? If so, can you please PM me? I did request names form the ILADS website and have left messages with those dr.'s but no response yet. Thank you.

 

 

Lymenet.org will send you a list of doctors in your state...They do ask that while using their discussion board that you do not post the name of the doctor there ever for the doctors protection so I guess we should do the same here. I see a lot of people send pm's when there are request for Lyme dr. name following the same protocol.

[justinekno]

I will check out Lymenet.org. Thank you. I agree with not posting dr's name on the board. A PM would be great!

 

 

 

Lymenet.org will send you a list of doctors in your state...They do ask that while using their discussion board that you do not post the name of the doctor there ever for the doctors protection so I guess we should do the same here. I see a lot of people send pm's when there are request for Lyme dr. name following the same protocol.

[KeithandElizabeth]

I am sorry that your son has lyme, but I think this is fixable and the lyme treatment will be so very helpful.

 

I personally do not think that lyme and PANDAS are separate, but that lyme is one of the microbes that can create a psychiatric response. Our son had lyme and we never knew it and he had every single PANDAS symptom. So, I think that for him... he was fighting lyme and babesia so hard that he could not handle the strep and whenever he got strep, he had an exasperation PANDAS wise.

 

There are some great lyme doctors in the Northeast.

 

You may want to make an appointment with a few of them and see who you can get into first. I would also PM lymemom about doctors.

 

Elizabeth

[tpotter]

Does anyone know if Dr. B. is Lyme Literate? He is currently having us test our boys (we're waiting for the kit from Igenex), and he seems to know so much about all this stuff. Thanks.

[justinekno]

We see him and he is knowledgable about Lyme although when it becomes complex (i.e., chronic Lyme) then he does defer to a LLMD as is our case.

 

Does anyone know if Dr. B. is Lyme Literate? He is currently having us test our boys (we're waiting for the kit from Igenex), and he seems to know so much about all this stuff. Thanks.

[justinekno]

I tend to agree with your view. I keep hearing how there are great Lyme dr's in the N.E. which makes sense since Lyme started here but I can't seem to get any to return my calls or answer their phones or they cost ridiculous amounts of money which aren't covered by insurance. It's so frustrating. I just want to help my son!

 

I am sorry that your son has lyme, but I think this is fixable and the lyme treatment will be so very helpful.

 

I personally do not think that lyme and PANDAS are separate, but that lyme is one of the microbes that can create a psychiatric response. Our son had lyme and we never knew it and he had every single PANDAS symptom. So, I think that for him... he was fighting lyme and babesia so hard that he could not handle the strep and whenever he got strep, he had an exasperation PANDAS wise.

 

There are some great lyme doctors in the Northeast.

 

You may want to make an appointment with a few of them and see who you can get into first. I would also PM lymemom about doctors.

 

Elizabeth

[Phasmid]

Just wondering how Lyme disease and PANDAS would not be separate entities if many children don't have Lyme, but have all PANDAS symptoms?

 

 

I personally do not think that lyme and PANDAS are separate

[KeithandElizabeth]

Our son initially had only symptoms with strep and when we treated the strep, his symptoms would go away. Then there came a point when he was just in a constant exasperation without relief. I DO NOT think that everyone has lyme, but I think that for us, the lyme was preventing our son from completely healing.

 

I think that many microbes can result in PANDAS or PITANDAS. Some kids may just have strep as their only issue, but other children may have mycoplasma as their issue and then some may have lyme as their issue. And then there are many children who may have multiple infections. One of my thoughts as to why Dr. K often refers to difficulty in treating PANDAS after the age of 10 is that the older child has a higher possibility of having multiple infections that are harder to eradicate with just IVIG and one antibiotic.

 

I am guessing these multiple infection triggers that can create "PANDAS" symptoms are what is leading to the name change from PANDAS to a broader spectrum of bacterias/viruses that can lead to the same symptoms.

 

Elizabeth

[laurenjohnsonsmom]

There are lots of Lyme literate docs in the NE but few treat children.

 

Good luck on your search and please keep us posted on your progress..

[Worried_Dad]

I agree, Elizabeth. Just watched Dr. T's presentation at the AO conference on DVD, and he basically said the same thing, calling them "PANDAS-like illnesses." Essentially, he believes that a number of infectious triggers can cause the same spectrum of symptoms, GAS being one of those... and that's part of the reason PANDAS has remained embroiled in medical controversy. Not every case that presents like PANDAS turns out to be primarily or exclusively related to strep... or even related to strep at all.

 

That being said, I do believe that PANDAS is one distinct "subtype" of these awful pediatric neuropsych disorders. Doctors like Dr. Swedo and Cunningham and many others have done extensive research to establish the connection to GAS, identify the mechanisms by which it triggers the autoimmune response and the attack on the basal ganglia, etc. In our case, we started with an LLMD who initially suspected Lyme: he's the one who ultimately diagnosed our son with ARF/SC and later PANDAS. He clearly considered Lyme and PANDAS to be distinct disorders... although he always cautioned us that there could be secondary infections / co-infections involved as well.

 

Frankly, I'd be ecstatic if the medical establishment wound up saying "PANDAS is just one subcategory of a much broader PAND / PITAND constellation of disorders that exhibit overlapping symptoms" as long as that translated into acceptance of the diagnosis, adequate treatment, and insurance coverage for our kids!!! What drives me nuts is hearing folks like Dr. K confide that this "medical controversy" largely amounts to political infighting, stubborn pride, and experts on both sides arguing over "a few words." Argh....

 

 

Our son initially had only symptoms with strep and when we treated the strep, his symptoms would go away. Then there came a point when he was just in a constant exasperation without relief. I DO NOT think that everyone has lyme, but I think that for us, the lyme was preventing our son from completely healing.

 

I think that many microbes can result in PANDAS or PITANDAS. Some kids may just have strep as their only issue, but other children may have mycoplasma as their issue and then some may have lyme as their issue. And then there are many children who may have multiple infections. One of my thoughts as to why Dr. K often refers to difficulty in treating PANDAS after the age of 10 is that the older child has a higher possibility of having multiple infections that are harder to eradicate with just IVIG and one antibiotic.

 

I am guessing these multiple infection triggers that can create "PANDAS" symptoms are what is leading to the name change from PANDAS to a broader spectrum of bacterias/viruses that can lead to the same symptoms.

 

Elizabeth