Jump to content
ACN Latitudes Forums
  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

colleenrn

Question for Dr. Latimer's patients

Recommended Posts

My brother has an appoitment tomorrow with Dr. Latimer for one of his children (other child has appt. in a few weeks). He is considering cancelling the appoitment b/c he recently began to wonder if his 4 year old could be dealing with Lyme as her Western Blot showed bands 41 and 23 positive. I am asking this question for him. Does Dr. Latimer address/test for Lyme? My brother's children also have strep issues and seem to have PANDAS, so I am thinking he should keep his appt. with Dr. L, but looking for any input.

TIA.

Colleen

Share this post


Link to post
Share on other sites

Hi Colleen,

I believe she does.

 

Deanna

Share this post


Link to post
Share on other sites

My brother just talked to Dr. Latimer's office. They said Dr. L refers Lyme patients (or possible Lyme pts) to Dr. Charlotte Babey-Morel at Georgetown. They will give him until noon to decide if he wants to keep the appt. with Dr. L or cancel.

Colleen

Share this post


Link to post
Share on other sites

She had us do the Igenex after the regular (LabCorp) western blot was only 41+. Igenex was "negative" so it's a done deal to her, although some people here say the IND's on the IGenex might mean positive. We saw Barbey-Morel too, and she follows CDC guidelines only. JUST fyi...

Share this post


Link to post
Share on other sites

LYME/PANDAS/ DR Latimer pt chiming in here....

 

my child had confirmed (labcorp!) lyme and PANDAS (well- no confirmed strep-- but it all fits)and Dr Latimer is receptive to it. My child was diagnosed with lyme before we saw Dr. L. Dr Brian Fallon studies lyme & OCD specifically and she is familiar with his research. Unfortunately he does not see children (or did not when I checked a few years ago)

for my second child who has strep-confirmed PANDAS she asked if we wanted to test for lyme and we declined.

 

so that is not very helpful. I think she wlll definitely test for it like eljomom said- but she is not going to send him off to a doc that will find lyme in every pt. he of course, is free to do that, if he wants. I know someone else who saw the above mentioned ID doc at georgetown and had the same experience- cdc rules only and those bands will probably be ignored.

this is a hard call for your brother. Good Luck with the decision

We went to a GREAT LLMD in Fairfax Va (a rheumatologist) who really helped us with the lyme and understood PANDAS. She told me that we had to beat the infectious part of the disease and then deal with the auto-immune component. SMART lady:)

I will be happy to give more info if you PM me.

Share this post


Link to post
Share on other sites

My brother has an appoitment tomorrow with Dr. Latimer for one of his children (other child has appt. in a few weeks). He is considering cancelling the appoitment b/c he recently began to wonder if his 4 year old could be dealing with Lyme as her Western Blot showed bands 41 and 23 positive. I am asking this question for him. Does Dr. Latimer address/test for Lyme? My brother's children also have strep issues and seem to have PANDAS, so I am thinking he should keep his appt. with Dr. L, but looking for any input.

TIA.

Colleen

 

 

My son has seen Dr. L. I think that she is more lyme aware now but I was the one who pushed for Lyme testing last Spring. She ordered through Quest (neg). I did my homework and found another Doctor that ordered through Igenex (pos). She seemed honestly surprised that the results were so different. At that point, she suggested we see Dr. J. in CT. What gets confusing is that she also stated that yes, she's seeing quite a few kids with Pandas and Lyme - but - she never tested for Lyme until I brought it up.

 

So, as others have stated, worth it to see her for the Pandas but you do need to rule out Lyme as well. My son did not improve with PEX and it's likely the Lyme is the reason why not. I am confused why she's not more on board with the Lyme since the end result mimics PANDAS often causing neurological issues (she is a neurologist). A good Lyme doctor will probably effectively treat for both anyway.

 

I guess my final opinion would be to keep the appointment but be ready to pursue lyme testing as well (assuming money is not an issue). If money is an issue, I might rule out lyme first.

 

bill

Share this post


Link to post
Share on other sites

My brother has an appoitment tomorrow with Dr. Latimer for one of his children (other child has appt. in a few weeks). He is considering cancelling the appoitment b/c he recently began to wonder if his 4 year old could be dealing with Lyme as her Western Blot showed bands 41 and 23 positive. I am asking this question for him. Does Dr. Latimer address/test for Lyme? My brother's children also have strep issues and seem to have PANDAS, so I am thinking he should keep his appt. with Dr. L, but looking for any input.

TIA.

Colleen

I would not go to dr Latimer to be tested or screened for Lyme because she is not a Lyme specialist. If there is even a possibility of lyme your brother should go see Dr Paul Beals or the nurse Debbie McCabe at NIHA because they are Lyme and Pandas experts. They often run together so they understand both.

Share this post


Link to post
Share on other sites

My brother has an appoitment tomorrow with Dr. Latimer for one of his children (other child has appt. in a few weeks). He is considering cancelling the appoitment b/c he recently began to wonder if his 4 year old could be dealing with Lyme as her Western Blot showed bands 41 and 23 positive. I am asking this question for him. Does Dr. Latimer address/test for Lyme? My brother's children also have strep issues and seem to have PANDAS, so I am thinking he should keep his appt. with Dr. L, but looking for any input.

TIA.

These PANDAS experts have a lot invested in their treatment approach to "PANDAS" and are not clued in to the widespread rates of Lyme in children as a Lyme specialist is. It would take years to get up to speed about Lyme for these doctors but I agree that they should try if they want to be sure they are not missing TBDs. Even when PANDAS doctors test for Lyme they don't know how to interpret the results. Good that you encouraged her to test for Lyme but she is in the washington area where lyme rates are extremely high so it should be the first test these doctors order.

Colleen

 

 

My son has seen Dr. L. I think that she is more lyme aware now but I was the one who pushed for Lyme testing last Spring. She ordered through Quest (neg). I did my homework and found another Doctor that ordered through Igenex (pos). She seemed honestly surprised that the results were so different. At that point, she suggested we see Dr. J. in CT. What gets confusing is that she also stated that yes, she's seeing quite a few kids with Pandas and Lyme - but - she never tested for Lyme until I brought it up.

 

So, as others have stated, worth it to see her for the Pandas but you do need to rule out Lyme as well. My son did not improve with PEX and it's likely the Lyme is the reason why not. I am confused why she's not more on board with the Lyme since the end result mimics PANDAS often causing neurological issues (she is a neurologist). A good Lyme doctor will probably effectively treat for both anyway.

 

I guess my final opinion would be to keep the appointment but be ready to pursue lyme testing as well (assuming money is not an issue). If money is an issue, I might rule out lyme first.

 

bill

Share this post


Link to post
Share on other sites

We used to be a patient of Dr. L and she is the one who suggested the Igenex testing on ds12. It came back highly positive both CDC and Igenex wise. She really did not know what to do with it. She said he Augmentin XR would cover it. That is not the case. And, the long steroid taper she uses can be one of the worse things to do for positive Lyme. We sat on it for 7 months before getting a LLMD opinion and wish we had gotten it sooner. I firmly believe if you suspect a child has Lyme, let an LLMD treat that and find one that will partner with your PANDAS doc. They are both specialists in their own right.

Share this post


Link to post
Share on other sites
Guest pandas16

LYME/PANDAS/ DR Latimer pt chiming in here....

 

my child had confirmed (labcorp!) lyme and PANDAS (well- no confirmed strep-- but it all fits)and Dr Latimer is receptive to it. My child was diagnosed with lyme before we saw Dr. L. Dr Brian Fallon studies lyme & OCD specifically and she is familiar with his research. Unfortunately he does not see children (or did not when I checked a few years ago)

for my second child who has strep-confirmed PANDAS she asked if we wanted to test for lyme and we declined.

 

so that is not very helpful. I think she wlll definitely test for it like eljomom said- but she is not going to send him off to a doc that will find lyme in every pt. he of course, is free to do that, if he wants. I know someone else who saw the above mentioned ID doc at georgetown and had the same experience- cdc rules only and those bands will probably be ignored.

this is a hard call for your brother. Good Luck with the decision

We went to a GREAT LLMD in Fairfax Va (a rheumatologist) who really helped us with the lyme and understood PANDAS. She told me that we had to beat the infectious part of the disease and then deal with the auto-immune component. SMART lady:)

I will be happy to give more info if you PM me.

 

 

 

 

 

If scientists are right in currently estimating that about 90% of cells in the body are microbes, then wouldn't dealing with the infectious part be illogical? Seems like there will always be an infection of something somewhere no matter what. Shouldn't the real question be why that infection is triggering an autoimmune response?

Edited by pandas16

Share this post


Link to post
Share on other sites

My brother just talked to Dr. Latimer's office. They said Dr. L refers Lyme patients (or possible Lyme pts) to Dr. Charlotte Babey-Morel at Georgetown. They will give him until noon to decide if he wants to keep the appt. with Dr. L or cancel.

Colleen

Never heard of this doctor. There are just a handful of ilads trained lyme specialists in DC and I would not go to anyone who is not a member of ilads if you really want to be sure that you are not dealing with a TBD. Dr. Beals, Dr. Jemsek, and Dr. Jaller, are three of the main lyme literate doctors in the DC area. Beals is holistically oriented which is a plus. Jaller may be too but I don't know. I hear he takes insurance though. Dr. Sivieri, another holistic MD, is also well thought of as a lyme specialist although he may not be a member of Ilads. The best way to find a doctor, aside from a good reference from another patient, is to email Barbara at Ilads.org for a list of members in the area. There are some doctors who specialize in lyme/tbds and do not use antibiotics but we did not choose that route. Whatever your brother does, he should not go see an infectious disease doctor unless it is Jemsek. Most id doctors deny chronic lyme exists.

Share this post


Link to post
Share on other sites

[quote name='pandas16' timestamp='1302718494' post='109736'

If scientists are right in currently estimating that about 90% of cells in the body are microbes, then wouldn't dealing with the infectious part be illogical? Seems like there will always be an infection of something somewhere no matter what. Shouldn't the real question be why that infection is triggering an autoimmune response?

 

interesting point pandas16. i think the key may be in the balance of the microbes.

 

like, yeast -- we all have that in our body - even candida -- it's not really that the yeast in and of itself is troublesome -- it's when it gets out of balance and takes over. yes, perhaps it is the same for many other microbes. do we actually even totally clear strep? it's proven that we don't with herpes viruses, yes? so, just from my experience and research, etc -- i think the infections are important -- perhaps it is the imbalance that is triggering the autoimmune reaction - ?

Edited by smartyjones

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...