Lyme Doctors

[matis_mom]

I light of all the Lyme talk lately, could people share info on good LLMDs? I know there are many other forums and websites specific to Lyme Disease, but you guys are my family here dealing with PANDAS, so I'd rather get it from you all.

 

I would love to have a recommendation for someone in the Northern Virginia / Washington DC area. I have gotten a few recommendations but it seems they are all ridiculously expensive and have long waiting lists.

I any case if I get the OK from dh, I will go ahead and get the Igenex testing done now to save time.

 

Isabel

[sptcmom]

ILADS gives me a few docs in my area in NJ but they all have bad reviews except one. Dr David Dornfeld- DAN doctor and Lyme literate in Middletown/Shrewsbury in NJ. He is not accepting new patients since his associate moved to another state but he's gettng a new associate in October so things should improve.This doc has fair to good reviews for his people skills and very knowledgeable, excellent DAN doc, PANDAS literate, and overall not a bad deal if you want local followup care or immediate care in NJ. There is another one in the Flemington area. Will ask the Pandas mom near there and post later.Flemington guy doesn't take insurance but Dr Dornfeld does.

[lyme_mom]

I light of all the Lyme talk lately, could people share info on good LLMDs? I know there are many other forums and websites specific to Lyme Disease, but you guys are my family here dealing with PANDAS, so I'd rather get it from you all.

 

I would love to have a recommendation for someone in the Northern Virginia / Washington DC area. I have gotten a few recommendations but it seems they are all ridiculously expensive and have long waiting lists.

I any case if I get the OK from dh, I will go ahead and get the Igenex testing done now to save time.

 

Isabel

Dr. Paul Beals is excellent. He is an ilads family doctor and holistic MD with over 35 years experience. He treats PANDAS with a lot of success but he does not use IVIG. He treats a lot of kids. He uses the right combination of antibiotics along with nutritional and other holistic approaches. http://www.nihadc.com/practitioners/dr-paul-v-beals-m-d-c-c-n.html. Maryland office is his private practice and is MUCH cheaper (4106046344). Extremely smart, knowledgeable and compassionate.

[tpotter]

So, is Dr. B. not an LLMD?

[lyme_mom]

So, is Dr. B. not an LLMD?

Being Ilads means you are a lyme literate doctor or LLMD. Ilads is the International Lyme and Associated Diseases Society, considered the most respected organization for lyme specialists. All the good lyme doctors are members of this group.

[dcmom]

Ok- I am thinking of getting the girls tested. We are moving to NJ- I guess I am thinking of Dr Brian Fallon or Dr Jones (CT). Any thoughts?

 

As far as the igenex testing- I would prefer to get it done prior- I know I can order the kit- do I have the blood draw done at a local lab, and will most do this testing for you?

 

thanks!

[MichaelTampa]

From the Tampa area, I really think the only choice is Dr. Michael Cichon. He is the one I went to, and things have gone quite well so far.

[lyme_mom]

Ok- I am thinking of getting the girls tested. We are moving to NJ- I guess I am thinking of Dr Brian Fallon or Dr Jones (CT). Any thoughts?

 

As far as the igenex testing- I would prefer to get it done prior- I know I can order the kit- do I have the blood draw done at a local lab, and will most do this testing for you?

 

thanks!

Not sure about which labs will draw for igenex. We did them at lyme doctor's office. Jones or Fallon are excellent but it may take a while to get in. You could get in with Beals in DC or MD faster before you leave.

[philamom]

Ok- I am thinking of getting the girls tested. We are moving to NJ- I guess I am thinking of Dr Brian Fallon or Dr Jones (CT). Any thoughts?

 

As far as the igenex testing- I would prefer to get it done prior- I know I can order the kit- do I have the blood draw done at a local lab, and will most do this testing for you?

 

thanks!

Martin Fried, MD

Colts Neck, NJ

 

Our Quest lab draws the blood (drawing fee) and then you ship it Fed Ex. Igenex requires it to be shipped out on Mon, Tues, Wednesday. The package from Igenex includes the free shipping label.

[philamom]

Ok- I am thinking of getting the girls tested. We are moving to NJ- I guess I am thinking of Dr Brian Fallon or Dr Jones (CT). Any thoughts?

 

As far as the igenex testing- I would prefer to get it done prior- I know I can order the kit- do I have the blood draw done at a local lab, and will most do this testing for you?

 

thanks!

Martin Fried, MD (GASTRO doctor who treats Lyme. He has info on his web site).

Colts Neck, NJ

 

Our Quest lab draws the blood (drawing fee) and then you ship it Fed Ex. Igenex requires it to be shipped out on Mon, Tues, Wednesday. The package from Igenex includes the free shipping label.

[MichaelTampa]

Regarding IGeneX testing, there have been threads in the past where this has been discussed, there is no clear-cut answer. For most people, where a few hundred dollars is a noticeable amount of money, I would recommend going basic with western blot--igg and igm, and that's it. The lyme doc can order more if that makes sense at the time. If you're really really desparate for quick resolution, things are horrible, and you can afford more, like the antibodies for borrelia and coinfections, sure, okay, but I would not recommend in most circumstances just because I think the western blot is the best chance to confirm a real problem with lyme. I think there will be too many false negatives with the other tests, making them more of a "waste of money" in most cases.

 

Yes, you will need to find someone to draw the blood for IGeneX testing. Some doctor's offices do this, and there are independant labs that do this to. Some people have been able to get Quest or LabCorp to do this for them, others have not. I had it done at Granite Labs for a $15 lab draw fee.

 

Understand you're talking about kids, but, for anyone else reading this, for adults, I'd recommend the LabCorp CD57 "HNK1" test. (Quest doesn't do it.) With insurance, this is likely to cost about $10 so the cost-benefit on this one is a pretty easy decision for most circumstances.

 

Michael