Dr. Beal

[Wilma Jenks]

I went to a Lyme meeting today and the lyme people never heard of Dr. Beal. Isn't he a pretty well known Lyme specialist? These people seemed 2 know their stuff too! I was surprised.

[kmom]

He's not as high profile as those in documentaries or he would have charged you 5x the price to see him. Altho some charge that much and aren't that high profile! From what I know, he attends conferences w/ the more famous LLMD's but he isn't the one giving the presentations.

 

So I take it you are back to the Lyme trail? Did the people at the meeting think you should investigate Lyme too? Did you learn a lot of info at the meeting?

[Wilma Jenks]

My child's psychologist wanted us to go to the meeting, because it was all about microbes, and she felt it had a lot of similarities to PANDAS. I absoulutely keep thinking of the Lyme component. I need 2 really feel sure that it is not an issue before the IVIG... but how many times do you keep testing and looking for the Lyme? Seems like it could go on for ever. And Dr. Beal said you may never know for sure. It is not clear cut and very confusing for me. I don't think my girl is going to let me draw blood too many more times. She is at the end of her rope. Don't blame her of cours. I really have to pick and chose the labs I do at this point. Advice always welcome.

[tpotter]

Wilma,

 

I can't send you a PM (your full.)

 

Personally, I think it doesn't hurt to do both. We are getting Lyme tx, but are also doing IVIG, because there's no question that the whole response in my kids is autoimmune.

[matis_mom]

My child's psychologist wanted us to go to the meeting, because it was all about microbes, and she felt it had a lot of similarities to PANDAS. I absoulutely keep thinking of the Lyme component. I need 2 really feel sure that it is not an issue before the IVIG... but how many times do you keep testing and looking for the Lyme? Seems like it could go on for ever. And Dr. Beal said you may never know for sure. It is not clear cut and very confusing for me. I don't think my girl is going to let me draw blood too many more times. She is at the end of her rope. Don't blame her of cours. I really have to pick and chose the labs I do at this point. Advice always welcome.

Wilma,

We had been treating my ds for PANDAS for two years and were getting ready to do plasmapheresis. Something kept bugging me and we went for a second opinion with Dr. Bouboulis. He ordered a tons of tests, among them a Western Blot (just through Labcorp). Much to our surprise, ds had 4 bands positive (5 needed for an "official" positive).

Keep in mind we started this journey with an LLMD who was 100% sure he had Lyme AND Pandas, but all bloodwork was negative (even through specialized labs, and they kept running them) and so we stopped the Lyme treatment and just stuck to the PANDAS part. I wish I had known back then how unreliable those tests are!

Could you do a trial treatment and see how she does before proceeding with IVIG?

[Iowadawn]

My child's psychologist wanted us to go to the meeting, because it was all about microbes, and she felt it had a lot of similarities to PANDAS. I absoulutely keep thinking of the Lyme component. I need 2 really feel sure that it is not an issue before the IVIG... but how many times do you keep testing and looking for the Lyme? Seems like it could go on for ever. And Dr. Beal said you may never know for sure. It is not clear cut and very confusing for me. I don't think my girl is going to let me draw blood too many more times. She is at the end of her rope. Don't blame her of cours. I really have to pick and chose the labs I do at this point. Advice always welcome.

 

 

If you do the IVIG, this is a time to have blood drawn without another poke. The doc can order the labs and then the nurse, or whomever will get the blood after the catheder is in and before the IV. We have had this done for this very reason. An idea. Dawn

[lfran]

Wilma,

 

If blood tests are becoming a problem, there are a couple of urine tests you can do. One is usually done after provocation with antibiotics or herbs (the DOT BLOT) and the other is done without antibiotics, I think (PCR). Igenex runs both of them -- you can call them and ask.

 

Like the blood tests, they don't always show positive -- I think only 30% of people with Lyme show positive, but it's noninvasive and not *too* expensive. They like 3 samples, to maximize catching the antigen, but you can do one or two -- we did two, at $70 each for the dot blot. Not sure what the PCR cost is.

 

My DS9 took the urine dot blot after a course of antibiotics and came up positive, even though his western blot had only a couple of bands show. (Actually, one of the two samples was positive, but that's considered enough).

 

Just a thought for an alternative test route.

 

 

My child's psychologist wanted us to go to the meeting, because it was all about microbes, and she felt it had a lot of similarities to PANDAS. I absoulutely keep thinking of the Lyme component. I need 2 really feel sure that it is not an issue before the IVIG... but how many times do you keep testing and looking for the Lyme? Seems like it could go on for ever. And Dr. Beal said you may never know for sure. It is not clear cut and very confusing for me. I don't think my girl is going to let me draw blood too many more times. She is at the end of her rope. Don't blame her of cours. I really have to pick and chose the labs I do at this point. Advice always welcome.

 

 

If you do the IVIG, this is a time to have blood drawn without another poke. The doc can order the labs and then the nurse, or whomever will get the blood after the catheder is in and before the IV. We have had this done for this very reason. An idea. Dawn