who to see: Dr. T or Dr. B

[frikfrak]

Hi,

 

Did already posted that I had my 1st appt. with Dr. T in one month but now I'm wondering if Dr. B would be better.

 

I only ask because of all the blood work that's going to be needed and also the money for the appt.

 

I think Dr. B takes insurance, yes?

 

I can only afford one of them, where do you think I should put my money?

 

FYI: son been seeing LLMD (currently on #3) since 2009, only worse.

 

His Mom

[Guest]

As a sick patient I had to hound Dr. T's office constantly to get anything done. After a very bad reaction to antiviral which sent me to ER, they said they would send labs 1 month ago, I haven't heard a thing. I've called and emailed multiple times without any response. I gave up b/c I'm actually too sick to do this stuff. It also took 3 months to get my initial labs done, it was a mess.

 

Any one else know what to do about this or had this problem?

 

He is brilliant and kind though, but I'd say the rest is unprofessional. I think one of the most important aspects of finding a doctor is the staff! I've seen so many doctors (in my 10 years of being sick) and the only ones that I recommend and who've helped me, have amazing office staff that get things done and cater to a sick patient.

 

I guess what I'm saying, since it seems like the doctors relatively have a similar treatment approach is, #1. Look at the staff, #2. Look at insurance acceptance.

Edited June 4, 2013 by Guest

[LNN]

It depends on what you're looking for in a doctor. They are very different people with very different mind sets and treatment options. Since you've been on the lyme trail for so long, you've obviously done all sorts of abx combinations and supplements. So I'm not sure what else Dr T could offer that your LLMDs haven't offered already. Dr B could offer IVIG if that's the direction you feel you want to follow. Dr B is certainly staffed better but I understand that his staff plays quite a gatekeeping role and getting in contact with him personally can be just as frustrating as trying to contact Dr T.

 

To throw a monkey wrench into things, I'll toss out a third name for you to consider - Dr. O in CT. (Or Dr M in CT if you're looking for an LLMD who has a number of Pandas/lyme patients). The reason I'd recommend Dr O is that she comes from the autism world and she takes a whole body/support approach. Whereas Dr T is focused on the causation and Dr B is focused on suppressing the immune response, Dr O seems focused on supporting the things that have gone wrong in the system so that the body can play a major role in healing itself. It's a strategy we followed with Dr M with great success. The reason I say Dr O first is that it seems you may be looking for someone who is not an LLMD, but both of them believe in integrative approaches.

 

I don't mean to dis either Dr B or Dr T but given your backstory, I had to put Dr O's name out there for your consideration. You can PM me if you want contact info, or if others who see her chime in, they can probably give you better details.

[Hopeny]

We see Dr B, dr o and now dr m. Could you give a brief refresh of your history and what treatments you have tried? Eg have you tried abx, combo abx, supplements etc? Just trying to get a sense of the protocols you have followed. My dd has pandas/Lyme. From posts I have read, though i am sure he is brillant, i did not get the sense that dr t knows Lyme well do we have never seen him

[Guest]

I don't mean any disrespect either guys, but coming from a very sick patient, there should be more professionalism and there is no reason to be so understaffed.

But I just wanted to mention I mean no disrespect towards the doctors, it just may be a factor in your decision. An important factor for me.

[frikfrak]

Hi,

 

Well I'll try and make this as short as possible.

 

My son is 23, diagnosed in Dec. 2009, Lyme, all bands positive and RMSF. Found babesia in 2012. Treated with LLMD (2 of them) over the next 2+ years with oral abx and IV doxy for 9 months. Now on 3rd LLMD. All of which have tried numerous abx, combos, IM bicillin shots. zitho/omnicef/rifampin/amoxicillin/Bactrim DS/flagyl/tindamax/LDN/Mepron/Malarone/mino/plaquenilvaltrex, more I can't think of, various combos of these.

 

Nothing has worked, kept getting worse. Bout of OCD back in 2010, laughs ALL day, uncontrollable.

 

Currently still laughing, playing with top button of shirts-before that played with deck of cards.

 

Currently on Augmentin XR/Nystatin/Malarone/Flagyl/Biaxin....actually doing alittle worse, laughing more.

 

Complete personality change early on, symptoms came on overnight which is why we took to doc in the first place.

 

Recently been told to look into PANDAS so here we are now. This seems to fit much more than lyme because he is all mental, nothing physical, never physical.

 

doesn't speak, lost, confused, totally out of it.

 

On lots of supplements. Obviously were missing something since he's been on all this and nothing.

 

All LLMDs we've seen are very well known. Like you all, spent tons of money and still nothing.

 

Decided to see Dr. O on advice from this forum. Called and left message, hoping for an appt. ASAP.

Hoping for the best as usual, but not going to lie, hard to stay positive.

 

His Mom

[smartyjones]

i recently saw dr o speak at a TACA conference, specifically about pandas. if you haven't, you can google her and see some excerpts from lectures she has done in the past. that could help you get a feel for her.

[Hopeny]

Ok thanks for the history, due to the Lyme issue I would consider dr m in ct, though for full disclosure we just started with him. Out first llmd did only abx. Dr m seems to really get Lyme, what the symtkms are, and how to get rid of it. Dr o is also great, ideally would try to do both. Ain't going to be cheap though. Thats why we dont take vacations. For dr o there is an incredibly long form on the website you need to fill out before they will make appt, giving you the heads up on that as you may want to start it. Good luck

[Christianmom]

I was curious which doctor's you have already tried. With positive lyme bands, I can't see have a PANDAS doctor can help you. Dr. T in particular, though he is very, very kind, knows nothing about lyme treatment as by his own admission.

 

It seems like most of the drugs your son has been are drugs that a PANDAS doctor would try. I'm not sure what a PANDAS doctor can do for you unless you are looking for IVIG or PEX. And if you son has lyme, IVIG and PEX will most likely only give temporary relief.

 

Any good lyme doctor should be very familiar with treating PANDAS. If the one you have isn't, I would get another one. My LLMD sees PANDAS as a co-infection of lyme because so many of his young lyme patients also have PANDAS.