Informing PANDAS dr and Cunninham of Lyme Dx

[dabel]

I was just thinking today that I hope everyone that is hopping over here from the PANDAS forum, due to Lyme diagnosis, is letting the PANDAS doctor and Cunningham (if they participated in the research study) know that their child has been diagnosed with Lyme. I think it is very important to do this so these other doctors will remove the blinders and rule out other causes of problems for these kids. I know that I would have appreciated Lyme to have been ruled out. If it was checked, or even mentioned, my one son would be 1 1/2 years in to Lyme treatment and we would have gotten him going when he was a willing to cooperate versus now where he has slipped so far I can't get him on board - not to mention the money we shelled out on IVIG and the steroids he was given which can make things worse. I know of one doctor that actually told the parents of one of his struggling patients that the Igenex tests were of no clinical significance! OMG! The kid was positive for Lyme, babesia, and bartonella!! This same doctor said that he only knows of two of his patients that had Lyme and the chances were very low for a child to have it. If that is indeed the case, those two children are mine and I know this to not be true. Anyway, I just wanted to encourage everyone to let the doctors know so that maybe the blinders will be removed and the children can get the appropriate treatment sooner. This information is very important to Dr. Cunningham also as they are finding high Camkinase II in the Lyme's kids as well.

 

It might not be a bad idea to let them know that the child is getting better too.

[NancyD]

Both Drs. L and B. know of my DD's LD diagnosis and I keep them informed about our progress. I have also emailed Kathy Alvarez. I wholeheartedly agree that this is important for many reasons!

 

Nancy

[sf_mom]

I have let them know. BUT, I often fantasize about a group letter from PANDAS parents now contending with Lyme/co-infections to let them 'ALL' know.

[Bill]

I have let them know. BUT, I often fantasize about a group letter from PANDAS parents now contending with Lyme/co-infections to let them 'ALL' know.

 

 

Me too. Last time we saw Dr. L. I basically asked her why the PANDAS and Lyme doctors were in different camps. Seems to me that any bacterial infection causing these issues is kind of the same problem. The type of bacteria involved and symptoms will dictate the course of treatment. I like the idea of getting rid of the current names (PANDAS, chronic Lyme) and moving to a more general term that cover all.

[dabel]

Bill - I am curious if Dr. L answered that question. It makes no sense that one infection could cause these types of symptoms but not another. Based on our experience they can all cause trouble in some! The treatment does need to be tailored to the bug though.

[KeithandElizabeth]

Dabel - Great point!!! I did email Dr. Cunningham's office about our positive lyme results and they seemed very appreciative of this information.

 

Bill - I walk around all day long talking to myself about how many of this big PANDAS doctors are missing these very important infections by just looking at strep. The scary thing about lyme is that is can ball up into a cyst with a year of antibiotics and a child may become asymptomatic until a new infection or stress brings the lyme out of cyst form. Hence, the importance of the cyst-bursting drugs.

 

Elizabeth

[tpotter]

I don't think that Dr. L. denies the presence of Lyme in these kids. We talked about it last time I was there, and I did not get the sense she questioned it. She asked who we were seeing?

[LNN]

I also let our doctors, including Dr C, know about our lyme/bartonella. I believe Dr L is quite open to testing thru Igenex and readily recognizes that lyme can play a role for some kids. I just think she feels this is outside her area and doesn't treat lyme on her own. Just my impression.

[norcalmom]

listent to swedo's talk last night on blog radio - toward the end I call in and ask how they are going to deal with co-infections in the new study. They will be testing for them. In the first round, she is going to try to isolate pure strep related, so sound liek if you have ANYTHING other than strep, you won't qualify for the study int he first round. Then next few rounds - she will take it on. Sounds like they are going to be using the spinal fluid to srceen for them - so far better than any blood testing!

 

I'm VERY interested in what percentage of these kids have co-infections. Swedo is very interested in broadening the scope of the defintion to PANS - and looking at how MycoP and Lyme involved.

 

http://www.blogtalkr...san-swedo--nimh

[cobbiemommy]

I, also, contacted Dr. K about the possibility of Lyme after we regressed following high dose IVIG. At first,he seemed skeptical. After we got all of our lab work back and emailed him the full diagnosis. He never responded back, but that would also make us one of the two in his practice. I had not thought of emailing Cunningham with the results. Thanks.

Cobbie

[philamom]

I also emailed the PANDAS doctors we have seen in the past, as well as Cunningham's office.

[dabel]

Norcal mom - I listened in on the Swedo interview last night and was so happy that someone asked about other infections. Thank you for asking that as it is so important as we have all found out! I was happy to hear her response as well!

Edited February 10, 2011 by dabel

[sf_mom]

The only bummer about spinal testing for Lyme it is widely known to be inaccurate.... they just don't find it there.

 

-Wendy

[lyme_mom]

listent to swedo's talk last night on blog radio - toward the end I call in and ask how they are going to deal with co-infections in the new study. They will be testing for them. In the first round, she is going to try to isolate pure strep related, so sound liek if you have ANYTHING other than strep, you won't qualify for the study int he first round. Then next few rounds - she will take it on. Sounds like they are going to be using the spinal fluid to srceen for them - so far better than any blood testing!

 

I'm VERY interested in what percentage of these kids have co-infections. Swedo is very interested in broadening the scope of the defintion to PANS - and looking at how MycoP and Lyme involved.

 

http://www.blogtalkr...san-swedo--nimh

It is very hard to find Lyme in spinal fluid. I rsearched this because we were pressured by our local hospital while trying to arrange for a picc line ordered by llmd to do a spinal tap on our son because they didn't believe my son's Lyme diagnosis. This was in spite of the fact that he had bells palsy and a very positive western blot and elisa. We decided it was not necessary or worth the risk of introducing another variable or infection in his spinal fluid thru the tap. I told the doctor that if they do a spinal and he gets an infection from it they can just blame it on the lyme disease and I didn't want to take any unnecessary risks with him. I have a friend who lost her sister due to a spinal gone bad during childbirth.She got meningitis from a dirty needle they believe.

Edited February 10, 2011 by lyme mom

[norcalmom]

She said they are testing blood, not just spinal fluid. She mentioned that two doctors - Carlos Pardo at John Hopkins and Ian Lipkin will be looking for other infections. I just threw it in my question since she had mentioned spinal taps on the kids in the study for anitineuronal antibodies.

 

 

She did say she is writing the Clinical Study- for PANS (Pediatric Autoimmune Neuro-phsychological Syndrome ) where they will look at other infections that cause pediatric neuro-psych symptoms in conjunction with immune reaction. This includes Lyme and mycoplasma.

 

Here are pardos and lipkins bios:

http://www.neuro.jhmi.edu/neuroimmunopath/lab.htm

http://156.111.235.11/pharm/cumc/profile.php?id=177

 

I haven't done any research on them, does anyone happen to know if either has done any lyme research?