Questions on PANDAS specialists

[Eliself]

Hi everyone, my last post didn't get any responses so hopefully someone can help with this one. For those who don't know, I am 15 and diagnosed with PANDAS and Lyme. I recently went to see my LLMD for the first time. I'm now taking cefdinir, azithromycin, and bactrim to treat the Lyme. (Still waiting on babesia and bartonella tests, but will probably treat regardless.) The LLMD is not familiar with PANDAS.

My parents and I have been talking about going to see a specialist. We live in Minnesota, and there aren't any really knowledgeable doctors here, so we'll have to travel. I know the closest is Dr. K.

I am wondering:

1. Is it worth it to travel for a specialist?

2. What specialist would you recommend and why? What treatments do they typically use?

3. What doctor(s) would be best for someone with Lyme? We already have a local LLMD who we are planning to stay with, but I think it would be helpful to have a doctor who acknowledges Lyme.

4. If we're treating Lyme, do we need to treat PANDAS separately too?

 

I looked at the AE alliance website and found the name of Amanda Moen, MD. She is a neurologist at Gillette children's and is local. Her profile says:

"AE experience:

Antibody-negative AE

NMDAR encephalitis

Other antibody positive AE

Her professional interests include anti-NMDA receptor encephalitis, neuroimmunology, leukodystrophies and other metabolic and genetic neurological disorders."

 

Do you think this doctor would be worth a try?

Thank you in advance for any insight and hope you're all doing well.

[marmcglynn]

I don't have a lot of knowledge regarding Lyme, but we traveled to dr. K from Wisconsin and it has been worth it. Some of our appointments after the initial consultation have been over the phone. This makes it more doable. Good luck!

[poppy]

Have you tried Newbridge Clinic? They are in the twin cities area and have expertise. Functional medicine model.

[Eliself]

Marmcglynn- Thank you! What kind of treatments did he prescribe? I've heard he has a terrible bedside manner- is that true?

 

Poppy- Yes, I have been going to Newbridge Clinic since October. She is very knowledgeable and has treated many PANDAS kids. She is more on the natural side, but seems willing to try anything. I think I'm hoping to get an opinion from someone with a bit more PANDAS knowledge. Thank you!

[ryan]

We determined late middle school that our 2 kids have PANDAS. We had great difficulty identifying an M.D. familiar with PANDAS and spent a number of years attempting to convince pediatricians to treat our kids. About 2 years ago, we attended the Midwest PANDAS conference in St. Louis and finally located a physician willing to take us on. She has been PHENOMINAL and has treated both my kids for PANDAS and Lyme Disease (we discovered my daughter had Lymes about the same time we uncovered the PANDAS. Our St. Louis M.D. uncovered Lymes for both my son and myself). She is in the St. Louis area and we live in Wisconsin. She has kept both of our kids on a prophylactic dose of penicillin to stop them from getting strep while aggressively treating their lymes. Immediately proceeding our initial appointment she ordered an array of tests (including blood, stool and urine tests) to look at a broad range of markers – never assessed by any of our prior physicians. Additionally, 1 week prior to each of our quarterly appointments she orders a complete set of labs to assess our overall progress and rework our med/supplement plans.

 

Unfortunately she is now closing her practice and we have had to locate a new physician. Fortunately, with her help we have identified a new physician who should be able to pick up where she left off. He is in Ohio, but we will make it work, because we truly believe a knowledge base regarding both PANDAS and Lymes is optimal – given the progress we have made since identifying a PANDAS/Lyme M.D. neither one of my kids have had a PANDAS outbreak and a number of their Lymes symptoms have dissipated.

 

Our St. Louis M.D. advised us to search the directories of the following resources to identify a new physician:

http://www.pandasnetwork.org/research-resources/us-providers/

 

http://www.medmaps.org/clinician-directory/

 

http://ilads.org/ilads_media/physician-referral/

 

We searched the sites for M.D.’s and came up with the following options:

 

WISCONSIN

Dr. Kyle Van Dyke M.D., Edgarton, WI -- Listed on PANDAS directory

http://www.wisconsinhyperbarics.com/kylevan.html

 

IOWA

Dr. Jon Ahrendsen, MD, Clarion, Iowa -- Listed on MedMaps & PANDAS directories

http://www.iowaspecialtyhospital.com/doctors/jon-ahrendsen/

 

ILLINOIS

Dr. Anju Usman M.D., Naperville, IL -- Listed on MedMaps & PANDAS directories

http://www.truehealthmedical.com/the-practice

Dr. Miroslav Kovacevic M.D., Hinsdale, IL -- Listed on PANDAS directory

http://webpediatrics.com/practice.html

 

Dr. Donald Raden M.D., Highland Park, IL -- Listed on MedMaps directory

chicagointegrative.com

http://www.chicagointegrative.com/raden_bio.html

 

Dr. Georgia Davis M.D., Springfield, IL -- Listed on MedMaps directory

http://www.georgiadavismdspringfieldil.com/

 

Dr. Lisa D. Crutcher M.D., Sycamore, IL -- Listed on MedMaps directory

http://rmg.nm.org/find-a-doctor/find-a-doctor-profile?id=2549

 

OHIO

Dr. Phillipp DiMio, Cleveland & Columbus Ohio areas -- ILADS Physician,

Our St. Louis M.D.shared: "I am a fan of Dr. Phillip DeMio MD in Ohio who is, leader in ILADS, and takes a very functional/integrative approach like me, only has been doing it longer.”

www.drdemio.com

 

After going through this process we have decided to go with Dr. DiMio in Ohio, an 8 hour drive. If he can truly pick up where our St. Louis doctor left off we believe the traveling is well worth the time and cost.

 

Finally, I can tell you that PANDAS falls under the classification of encephalitis, so the doctor you noted may very well have some insight to provide. If she is geographically close, check her out while you check into some others that may understand both issues.

 

Good luck!

[LNN]

I'm sorry - I don't know your history, since I'm not on this forum very often anymore. But I've been a Pandas mom for 8 years, with my now 14 yr old son having battled strep and Lyme (fully recovered now) and my 12 yr old daughter currently fighting some chronic infection - possibly Lyme and Bartonella. Here is my personal experience -

 

when my son was treated only for strep, with one antibiotic, he could never sustain remission. He had a tonsillectomy, plasmapheresis and IVIG over the course of 2 yrs. But then we found Lyme and he was treated with combo abx (a variety of augmentin, azithromycin, rifampin, tindamax, omnicef - 2-4 different abx at once). It took 2.5 yrs of Lyme treatment, but he fully recovered his health and no longer struggles with any Pandas/Pans mental health or neurological issues (previously had tics, OCD, anxiety, rage, adhd, brain fog, muscle pain). He's been symptom free and off all meds for 3 yrs. About once every winter, he'll catch a bug that's going thru school and feel a little "off" - maybe a hint of OCD or an eye tic. He'll take 10 days of one antibiotic or some antibacterial herbs (depending on how physically sick he feels, fever etc). And it all goes away in that first week. So he may have a tinge of Pans left if he gets a bacterial infection, but for all intents, he's back to 100%. In his case, a Pandas specialist (we saw 2 without lasting success) couldn't get him well. But his LLMD (who has since become a Pans specialist as well), treated the Lyme and that took care of the Pans.

 

My daughter's case is more complicated and I'll skip the long story. But the short answer is she's having the same experience. Treating with one abx didn't make a dent. Treating suspected Lyme/Bartonella is making a big difference. Combo abx (azithromycin and bactrim for her) make an important difference. But she also sees big gains from treating inflammation (herbs recommends in Stephen Buhner's books on Lyme and co-infections). Her anorexia lost it's hold on her, her panic attacks have stopped, her brain fog is much better on most days.

 

So in my opinion, treating the triggering infection - whether it's strep or Lyme or something else - is what you need to do. Pandas is strep triggered. Pans can be Lyme triggered. But the mental health symptoms go away only after you get rid of the triggering infection. In my experience, few Pandas specialists understand Lyme well enough to be of much help when it's part of your picture. But LLMDs end up helping with the Pandas/Pans whether they call it Pans or call it neuroLyme - it's pretty much the same thing from a practical standpoint.

 

Also, Dr K does NOT believe that Lyme is an issue in Pandas and he is unlikely to be much help if Lyme is in your picture.

 

If you have an LLMD you like, maybe ask him/her if they'd be willing to do a phone consult with our LLMD for some insights into how Pandas impacts Lyme treatments. Our LLMD is on the board of ILADS and our state board of health's Panda Advisory Board. And he's been treating both conditions for many years. He's generally willing to consult with other doctors over the phone (tho I'm not sure if he charges for this - I never needed to ask). PM me if you want his contact info.

 

Good luck!

[maybaby]

We saw Dr. K once. He does not treat lyme. We did not really click with him. My DD begged me not to take her back to him.

 

We have seen Dr. R in Illinois for the past 4 years. He is fairly new to the world of PANS and lyme (started 2 years ago). He is an integrative psychiatrist who began treating patients with PANDAS/PANS/LYME/etc. after finding that a lot of his patients weren't getting better on traditional meds for anxiety, OCD, etc. He is great at researching the latest medical options and working hard to find the source of the problem. He is very responsive, and does do conference calls.

 

I have looked into Dr. Usman, but that last time I checked she had a 9 month wait list. Her rate was $550/hr. I'm not sure if she treats lyme.

 

Hope this helps.

[maybaby]

We determined late middle school that our 2 kids have PANDAS. We had great difficulty identifying an M.D. familiar with PANDAS and spent a number of years attempting to convince pediatricians to treat our kids. About 2 years ago, we attended the Midwest PANDAS conference in St. Louis and finally located a physician willing to take us on. She has been PHENOMINAL and has treated both my kids for PANDAS and Lyme Disease (we discovered my daughter had Lymes about the same time we uncovered the PANDAS. Our St. Louis M.D. uncovered Lymes for both my son and myself). She is in the St. Louis area and we live in Wisconsin. She has kept both of our kids on a prophylactic dose of penicillin to stop them from getting strep while aggressively treating their lymes. Immediately proceeding our initial appointment she ordered an array of tests (including blood, stool and urine tests) to look at a broad range of markers – never assessed by any of our prior physicians. Additionally, 1 week prior to each of our quarterly appointments she orders a complete set of labs to assess our overall progress and rework our med/supplement plans.

 

Unfortunately she is now closing her practice and we have had to locate a new physician. Fortunately, with her help we have identified a new physician who should be able to pick up where she left off. He is in Ohio, but we will make it work, because we truly believe a knowledge base regarding both PANDAS and Lymes is optimal – given the progress we have made since identifying a PANDAS/Lyme M.D. neither one of my kids have had a PANDAS outbreak and a number of their Lymes symptoms have dissipated.

 

Our St. Louis M.D. advised us to search the directories of the following resources to identify a new physician:

http://www.pandasnetwork.org/research-resources/us-providers/

 

http://www.medmaps.org/clinician-directory/

 

http://ilads.org/ilads_media/physician-referral/

 

We searched the sites for M.D.’s and came up with the following options:

 

WISCONSIN

Dr. Kyle Van Dyke M.D., Edgarton, WI -- Listed on PANDAS directory

http://www.wisconsinhyperbarics.com/kylevan.html

 

IOWA

Dr. Jon Ahrendsen, MD, Clarion, Iowa -- Listed on MedMaps & PANDAS directories

http://www.iowaspecialtyhospital.com/doctors/jon-ahrendsen/

 

ILLINOIS

Dr. Anju Usman M.D., Naperville, IL -- Listed on MedMaps & PANDAS directories

http://www.truehealthmedical.com/the-practice

Dr. Miroslav Kovacevic M.D., Hinsdale, IL -- Listed on PANDAS directory

http://webpediatrics.com/practice.html

 

Dr. Donald Raden M.D., Highland Park, IL -- Listed on MedMaps directory

chicagointegrative.com

http://www.chicagointegrative.com/raden_bio.html

 

Dr. Georgia Davis M.D., Springfield, IL -- Listed on MedMaps directory

http://www.georgiadavismdspringfieldil.com/

 

Dr. Lisa D. Crutcher M.D., Sycamore, IL -- Listed on MedMaps directory

http://rmg.nm.org/find-a-doctor/find-a-doctor-profile?id=2549

 

OHIO

Dr. Phillipp DiMio, Cleveland & Columbus Ohio areas -- ILADS Physician,

Our St. Louis M.D.shared: "I am a fan of Dr. Phillip DeMio MD in Ohio who is, leader in ILADS, and takes a very functional/integrative approach like me, only has been doing it longer.”

www.drdemio.com

 

After going through this process we have decided to go with Dr. DiMio in Ohio, an 8 hour drive. If he can truly pick up where our St. Louis doctor left off we believe the traveling is well worth the time and cost.

 

Finally, I can tell you that PANDAS falls under the classification of encephalitis, so the doctor you noted may very well have some insight to provide. If she is geographically close, check her out while you check into some others that may understand both issues.

 

Good luck!

I forgot to mention that my post above is in response to Ryan's list of doctors.

[Eliself]

Thank you everyone! Ryan I think I know of someone seeing the St. Louis doc. Too bad they are closing their practice! Thanks for all the info.

LLM- thank you for sharing your experience! I will pm you. Maybaby- Yeah, I don't think we'll be seeing dr k! I've just heard too many not so great things about him. Doesn't seem like a good fit. Thanks for the info. Who is dr r? What treatments has he prescribed?

[maybaby]

Dr R. refers to one of the Illinois doctors listed in the above posts. For lyme, he'll prescribe antibiotics and/or herbs (mainly Beyond Balance herbs).

[PAN-PANDAS-LYME-FAMILY]

Maybaby I am looking for a pediatric llmd.  How did things go with Dr. Demio?  Does he treat with a combination of antibiotics and supplements?  

[jmiullo]

maybaby,

How has Dr. DeMio worked out for your family?  We live in FL and i suspect my ASD 13 year old who has been treated with antibiotics for past 2 years for PANS/PANDAS has Lyme and I am working to figure out who might be a good MD (that is also open to alternative treatments) to see.  It's like finding a needle in a haystack.  Your feedback on Dr. D or anyone else you may have seen or heard of, is much appreciated.

Edited September 18, 2018 by jmiullo