Lyme testing...false positives...31 epitopes neg., doc names

[eljomom]

It's been a downer day for me. Put Christmas stuff away, and am faced with the reality of life again. Choosing what to do next for my daughter---pandas, rule out lyme, etc.

 

In my reading, I am wondering if the LLMD's take seriously (and more importantly, test for to rule out) cross-reactivity that can cause false positives on Western Blots? From looking at some of the pandas posts with Lyme results, it seems sooooo many have 41+, 58+, 31+ . All of which I am now wondering if they are cross reactive with something that is making our kids have pandas symptoms, and maybe not really Lyme?

 

Igenex ran the 30-31 epitope on IgG (which was 31-) and IgM (which was 31 ++). BOTH were negative, which he said meant that the 31++ was really negative, and that it likely was from cross-reacting with another bacteria or virus.

 

So now, daughter's results are (only posting bands that weren't negative):

 

IgM

 

41 IND (was + on Quest taken prior)

58 +

66 +

83-93 IND

 

IgG

 

30 +

34 IND

41 ++

58 +

 

Finally, I would like any and all feedback (you can PM me if you'd rather)---positive or negative---about any of these docs for Lyme....do they check for all things that could cause positives other than Lyme? Maybe versed in autoimmune issues (pandas)...not over-the-top with herbals?

 

Dr. Elizabeth Lucas

Dr. Letitia Short

Dr. Vinitsky

Dr. Warren Levin

Dr. Stewart (in Leesburg, VA)

Dr. Beals

Dr. Debbie McCabe

Dr. Robert Duca (Dr. of Chiropractic)

 

Thanks so much.

Edited January 1, 2011 by eljomom

[sf_mom]

Dr. Beal's/Debbie McCabe: They are a Dr. and nurse team that work together. Debbie handles all Pandas/Lyme pediatrics while Dr. Beal's oversees things and treats adults. I understand Debbie is versed in both Pandas/Lyme and is currently helping many from the forum. Hopefully, a few individual's that are seeing her will either post or PM you.

 

They do test for all things. With your daughter results it would be prudent to test binding immune complexes, co-infections, provocation DNA testing for Lyme and viruses. They do not go overboard with herbal stuff... not even sure they recommend herbals.

 

-Wendy

Edited January 1, 2011 by SF Mom

[RNmom]

Dr. Beal's/Debbie McCabe: They are a Dr. and nurse team that work together. Debbie handles all Pandas/Lyme pediatrics while Dr. Beal's oversees things and treats adults. I understand Debbie is versed in both Pandas/Lyme and is currently helping many from the forum. Hopefully, a few individual's that are seeing her will either post or PM you.

 

They do test for all things. With your daughter results it would be prudent to test binding immune complexes, co-infections, provocation DNA testing for Lyme and viruses. They do not go overboard with herbal stuff... not even sure they recommend herbals.

 

-Wendy

 

I can validate this post as we see Debbie McCabe for Lyme and PANDAS. I sent you a PM as well

[philamom]

Feb 28, 2011 - Tentative Speaker - Dr. Elizabeth Lucas, MD - Dr. Lucas is a Board-certified Internist who practices just North of Baltimore, MD. She attended Medical School at the University of Oklahoma and did her residency at the Greater Baltimore Medical Center. She has been in practice for more than 15 years, beginning her career in Western Medicine and gradually adding more and more integrative medicine. She now specializes in functional medicine, nutritional medicine, and homeopathy along with traditional medicine in a holistic approach to Lyme and tick-borne diseases. She is a member of ILADS.

 

This is part of an email I received from our local lyme chapter.

[lyme_mom]

Debbie is a nurse who knows a lot about Lyme and pandas. She has dealt with both personally in her family so she gets it. Beals is a holistic md w 35 years experience who also is very knowledgeable about Lyme and pandas. Both are members of ilads i believe. Beals treats tons of kids without Debbie and has probably treated more kids in his long career than most family doctors. They work well together but he also works on his own because he is after all a very experienced holistic md. We use Beale and we are done with our Lyme treatment. I can't say enough good things about him. I also have met Debbie and know of her work and she is well respected at national integrated health associates in dc. Neither Beals nor debbie will treat for Lyme if no benefit is seen within two months. Worry more about untreated Lyme than treating something that turns out not to be Lyme. Both Beals and Debbie would require patients to take probiotics and watch for yeast issues. Both will look for other causes of the symptoms including nutritional deficiencies and heavy metal toxicities. Most Lyme patients have multiple infections, nutritional deficiencies and some level of toxicity. This is why an integrated approach to wellness works best. I think Debbie and beals have seen a huge connection between pandas and Lyme which many if the pandas doctors do not get yet exactly for dr b. I am sure that there are cases where the Lyme treatment actuallys treats something else but what does it matter if the patient gets well? Most parents care more about the outcome than the diagnosis. For example the Lyme protocol treats mycoplasma and erlichia so you don't really need to test for these things if you are already treating for Lyme. I am sure there are other infections treated w the Lyme protocol.