Dr. T and Dr. B PANDAS/Lyme cases

[Iowadawn]

Hello all.

 

We are really tossing around the idea of going out east. The old tmers on the forum are a bit familiar with our ds13 PANDAS/tickborne infections (B,B,&. We have never had, what I would call, a "thorough" medical workup and wonder if turning over another stone with one of these docs should be in the mix. What does Dr. T have to say about congenital lyme. A question for the PANDAS/Lyme parents. I know he has been pretty cool to it in the past. Our son's case has been incredibly difficult. We have been to Dr. K. We see a LLMD here in Iowa. I am tired of thinking. Help me out. Thanks. Dawn

[LNN]

I think the answer depends on what you hope to do or change in your treatment. We can all suggest lots of tests - but what do you want a doctor to do with the info? Each doctor has his own approach and focus.

 

When you say your son is "complicated" it makes me think of topics like methylation, pyroluria, yeast, amino acid imbalances, mold - all that "new agey" stuff so near and dear to my own heart - that are often at play in the Pans kids who don't respond quickly or fully to typical Pandas or lyme treatments. For my kids, their answers are in this new agey mix and IMO, neither of the docs you mention dip their toes in this pond very often. Even my own LLMD, who's totally into all this other stuff - sometimes gets focused on one or two issues du jour (like if he's seen a lot of issues with parasites in his patients, we end up discussing parasites that visit). So I usually need to scour the internet and "cram" before our appts, making a list of topics I want to explore, tests I want to run, and I sort of back seat drive during the appt. Sometimes he goes along, sometimes he tells me why he thinks my ideas are off base. But together, we work on an evolving plan. I long ago gave up on the idea of walking into any doctor's office and expecting them to have all the answers and tell me what to do.

 

So if you're wanting to pursue more conventional Pandas treatments to see if you've been missing something, I think Dr T is probably the most open to novel tests and theories but may lack the lyme experience (my impression is that he is still skeptical of ILADS protocols and testing - someone tell me if I'm wrong).

 

Dr B will probably order blood work to explore an immune problem and justify the IVIG if that's your plan but probably isn't going to have more experience with lyme than your current doctor. Just my impressions - haven't spoken with either of these docs in over 2 yrs. So I could be way off base.

 

If you don't think your LLMD is getting to the bottom of things, you may want to broaden your list of docs and look into integrative doctors - Bock, O'Hara and others - or look for a local DAN to collaborate with your LLMD. I'm not trying to dis either of the doctors you mention. They've certainly helped a lot of Pandas families. But your lyme dx changes the landscape, so if it were me, I think I'd travel to a doc who has experience with more than Pandas in order to justify the airfare. JMHO

[norcalmom]

Agree with LLM - and had to laugh a little when she said she gave up long ago walking into a drs office expecting answers and being told what to do. THOSE were the the days! I feel like I am a general contractor. And I have my team of specialists...and sometimes I wonder if the tile guy really can do the plumbing like he said, or if I should get a real plumber...

Speaking of which -

 

LLM-

Can you tell me where Bock and O'Hara are located, and their full names? My last visit with LLMD he recommended I find a homeopath to consult with on DS -(sometimes the tile guys doesn't want to do the plumbing!)

Thanks!

[NancyD]

LOL re your general contractor comment. How true that is!

 

Ken Bock Is located in Rhinebeck, NY. We have been seeing him for almost 10 years so if you have any questions feel free to email me. He treats my DD16 for PANDAS/Lyme/Bartonella//MTHFR/etc... and me for Lyme/Bartonella. He's an excellent medical detective!

 

Agree with LLM - and had to laugh a little when she said she gave up long ago walking into a drs office expecting answers and being told what to do. THOSE were the the days! I feel like I am a general contractor. And I have my team of specialists...and sometimes I wonder if the tile guy really can do the plumbing like he said, or if I should get a real plumber...

Speaking of which -

 

LLM-

Can you tell me where Bock and O'Hara are located, and their full names? My last visit with LLMD he recommended I find a homeopath to consult with on DS -(sometimes the tile guys doesn't want to do the plumbing!)

Thanks!

[bulldog24]

there is Dr.J in CT. he does it all.

[LNN]

Agree with LLM - and had to laugh a little when she said she gave up long ago walking into a drs office expecting answers and being told what to do. THOSE were the the days! I feel like I am a general contractor. And I have my team of specialists...and sometimes I wonder if the tile guy really can do the plumbing like he said, or if I should get a real plumber...

Speaking of which -

 

LLM-

Can you tell me where Bock and O'Hara are located, and their full names? My last visit with LLMD he recommended I find a homeopath to consult with on DS -(sometimes the tile guys doesn't want to do the plumbing!)

Thanks!

Love the general contractor/tile analogy!

Here's Bock's site: http://www.rhinebeckhealth.com/rhc/index.php Nancy's your best source of info.

 

Here's O'Hara's site: http://ihealthnow.org/ and a Youtube video that gives you her perspective on treatment.

 

You can search YouTube for more videos by both doctors that are longer/more indepth. Neither are homeopaths. They're integrative - from the DAN world. Both require a plane trip into the NYC area and then a rental car. I don't know either doctor other than by reputation. But they're on my short list if we ever had to add another doctor beyond our LLMD. On the west coast, there's Klinghardt in Seattle or you can PM SFMom. As for homeopathy, I'd PM Stephanie2.

[EAMom]

Hello all.

 

We are really tossing around the idea of going out east. The old tmers on the forum are a bit familiar with our ds13 PANDAS/tickborne infections (B,B,&. We have never had, what I would call, a "thorough" medical workup and wonder if turning over another stone with one of these docs should be in the mix. What does Dr. T have to say about congenital lyme. A question for the PANDAS/Lyme parents. I know he has been pretty cool to it in the past. Our son's case has been incredibly difficult. We have been to Dr. K. We see a LLMD here in Iowa. I am tired of thinking. Help me out. Thanks. Dawn

 

has anyone in N. CA (or in the West) thought about seeing Dr. Schweig in Petaluma CA?

http://pandasparentsymposium.blogspot.com/p/sunjya-k-schweig-md-integrative.html

[norcalmom]

I sent my nephew there before there was anyone down here to do IVIG. HE was new to the whole pandas thing at the time - he was brought into it because his nurse practicioners son had pandas (tic mainly I htink) and was trying to raise money for an IVIG (stanford would not perform ) she finally got it, and I think he is doing much better (he's older). search for amyjoy's postings - thats the mom/nurse practicioner. (sp??). She (and Dr Schweig) ran the recent pandas symposium in SF. (I was out of town)

 

I did have a phone consult with him a couple years ago, and he attended the Texas Symposium last October. At that time last year he had only treated a small handful of pandas kids and I felt like he was still learning pandas stuff, and I wanted more of an expert. I'm sure he has alot more knowledge now, and he is an extremely caring physician. Att he time - if I was going to do IVIG I wanted an immunologist, we had done one in Chicago, and were thining about a second and I was searching all over for pandas docs closer to home. My nephew did have very successful IVIG done at his office in Petaluma. And if you have insurnce issues, it is very well priced (as far as IVIG can be anyhow!)

 

He's very open to treating and testing and supplements as well as herbal remedies (with out without antibiotics)...he treats Lyme, but isn't a specialist. He did run our original Lyme and mycoP panels (at my request- but he concurred very quickly, and added a couple other tests on there too). I'm not sure if AmyJoy is still on the board I don't see her post anymore...but you can call there and talk to her - or Dr Sweig...amy has alot of pandas info and as a pandas mom, is more than happy to help in anyway she can. and she seems up on all the integrative stuff as well. I knowher son was getting relief from chiropractic adjustments for his tics prior to getting his IVIG.

[norcalmom]

ANd thanks for the Doctors names LLM, Nancy D and Bulldog!

 

My friend who runs a cardiac rehab program (she's a cardiac nurse) swears by this guy - michael gandy. He's and herbalist / accupuncturist, and she calls him her "witch doctor". I've been toying around with seeing him. He may not know pandas but may be able to help boost DS's immune system. I believe that there's something to be said about herbs and accupuncture helping your body heal itself.

 

Has anyone seen a practicioner like this? Here's his site:

 

http://www.livelongerlivestronger.com/chinese_herbs.html

[cobbiemommy]

We were seeing a LLMD in Missouri and had previously seen Dr K. When we went to Dr. B, he was able to get us into a spot with Dr. J. Dr. B does a very comprehensive immuno workup. We discovered a lot that made so much sense; like low IGg and Immunodeficiency related to strep. Dr. B is willing to work with other docs (especially if he is familiar with their practice). He leaves all of the Lyme meds to Dr. J, but they will communicate about cases.

 

The websites for the Jeffrey Modell foundation and the Immune Deficiency Foundation recommend seeing an immunologist when there are illnesses that won't go away with conventional treatment. That is why we picked Dr. B. Is he perfect? No. Is he very good at what he does? Yes.

 

We were able to rule out a lot of disorders with his testing as well. Things like Celiac, HHV6, methylation issues. If you ask for a specific test and he is familiar with the methodology/logic he is very open to the testing. If nothing else, he rules things out. Dr. B will do a very complete history, so come prepared. He will also listen intently to your perceptions and opinions.

 

I am sure Dr. T is a very good doc, but Dr. B fit us best because of ongoing infection that would not resolve with conventional treatments.

 

Cobbie

[tpotter]

PM'd you

[sf_mom]

NorCal and EAMom:

 

Here are some names in our area and a lot closer than Petaluma.

 

A few of us are seeing Dr. Song but she is no longer accepting new patients but perhaps if you had a referral from LLMD she would consider taking you. I understand her associates are just as good and still accepting new patients.

 

http://www.wholechildwellness.com/

 

Dr. Wayne Anderson and he is located in Marin and little closer than Petaluma.

 

http://www.wayneanderson.com/

 

Better Health Guy: Is very helpful with Zyto machine and will work any Dr. and make herbal recommendations

 

http://www.betterhealthguy.com/joomla/index.php

 

EAMom: If you are looking for an integrative Dr. that understands PANDAS I would start with our LLMD in Redwood City. He is helping many PANDAS kids that do not necessary have Lyme but other chronic issues and is very versed in Detox/Methylation/Biofilms, etc. I think you know his name.

 

There are others.... We have a lot of good choices in the Bay Area.