Need reassurance

[dcmom]

So- I want to investigate Lyme further . I made an appt with Dr B in MD. Googling his name brings up info about cases and disciplinary actions against him. I know about the witch hunt fir Lyme docs, but the details of the cases sounded very fringe (at best) to me. I didn't want to wait, or pay for DrJ in CT if I don't need to.

 

For those who have seen him, can you fill me in on some details and what you think...

 

Thanks

 

Eileen

[smartyjones]

So- I want to investigate Lyme further . I made an appt with Dr B in MD. Googling his name brings up info about cases and disciplinary actions against him. I know about the witch hunt fir Lyme docs, but the details of the cases sounded very fringe (at best) to me. I didn't want to wait, or pay for DrJ in CT if I don't need to.

 

For those who have seen him, can you fill me in on some details and what you think...

 

Thanks

 

Eileen

 

 

i have not seen him as a patient but i attended a lecture he did on lyme. i very much liked him and felt he was certainly above board. he answered my personal questions both during the lecture and after. he did discuss the aspect of multiple infections causing trouble. one of the things that stuck with me that he said was to the effect of. . . okay, so many people say it's not lyme, fine -- then WHAT is it that is causing these people's ill health -- find out and treat it!

 

we are on a more alternative treatment path, but i have him as my plan B if we needed to change from that path.

 

i'm sure others with more experience will chime in.

[sf_mom]

DCMom,

 

Good choice... Many love Dr. B and Debbie M and I'm sure you'll get a lot of support by others.

 

You have to remember Chronic Lyme does not exist, the labs are bad, the tests are too sensitive, the bands cross react with other viruses or illnesses.... frankly, its not Lyme. Dr. J in CT, Dr. B in MD, Dr. J in MD, Dr. H etc. etc. etc. are all under investigation. Just google Dr. J in CT. Dr.'s that do accept insurance you can hardly find their names when googled. There are insurance minders that constantly visit these offices as patients. Our Dr. would not even comment on my twins potential diagnoses until we had conclusive results. Igenex is constantly being investigated but remains a licensed and regulated lab for years now.

 

Just posted yesterday on the PANDAS forum

 

He also said that myco p, strep, and Lyme are implicated in this "syndrome"---which he looks forward to the change in name, as pandas limits people to the strep as onset, and he doesn't believe this to be such a big indicator as other viruses, bacteria can be too. He did look at dd's Igenex results, and the Western Blot from Labcorp, and said we should be "very careful" with Igenex's results. That the FDA had been at their door a couple times this year, etc.

 

AND, yet our kids are getting better when these results are positive via these labs and treated by these Dr.'s in spite of all the controversy. We are here posting about it often because for many it is truly MCIS and not an auto-immune disorder. You will know within the next 6 months if the Lyme protocol is working appropriately for your kids and gain confidence in the Dr's, treatment and recovery process.

Edited January 21, 2011 by SF Mom

[JTs-Mom]

I had considered Dr. B also, but I also googled him and came across the same info. I know others have been happy with him, but it made me nervous about him. I always check the state medical board records for any doc I am considering. You may want to check out the Maryland Board of Medicine. https://www.mbp.state.md.us/bpqapp/

 

It's really hard to know. Some have raved about Dr. C in PA, but I took my son to her twice and was not pleased with her treatment approach. At some point, I think it's just trial and error until you find someone you are comfortable with. Unfortunately, that can sometimes mean a lot of different doc appts.

 

Good luck!

[dcmom]

JT Mom

 

have you found a doc you like?

[Tamistwins]

What do other people feel about Dr.c in pa, I was thinking of making an appointment. Are there other docs someone can recommend close to nj?

Ty

[dcmom]

Dr C has a 6 mos + waiting list

[matis_mom]

Hi,

I am taking my two PANDAS/Lyme/What else kids to Dr. Beals. I really like him. He is very approachable and he knows what he is doing. Some Lyme doctors I've been to can be very overwhelming. Dr. Beals will listen to you, take in all the symptoms, run tests if he feels they are needed. His approach, as far as I can tell, is to treat and see how it goes. Some may tear their garments at this, but the fact is our kids need to be on antibiotics one way or the other, so may as well try and see if you can deal with this (whatever it is that they have) once and for all. My son had elevated ASO, some positive bands for Lyme. My daughter's bloodwork is completely normal, but he took the time to talk to her and he saw how her fears are completely irrational and totally affecting her. He did not have us run a thousand labs, he started treating her and she is doing better. If it wasn't for him who knows how long my daughter would have had to wait to get treatment, how much worse she could have gotten. He thinks Bartonella is the root cause for her, since she does not have many physical symptoms.

He is also very reasonably priced, and does not push a ton of pricey supplements on you. I know this may be irrelevant to some, but for me, it's part of the mark of a good doctor. I don't get the feeling he's into it for $, like I got with our first Lyme doc, who would only prescribe for exactly 30 days, and then every single time we went back added a few hundred dollars more worth of supplements.

Go, it's very much worth it.

[dcmom]

Thanks! That is just what I wanted to hear . We have an appt 2/9. I do really want to try the antibiotic cocktail approach to see if we can have some longer term improvement.... (we also have indication of Lyme exposure via Igenex).

[philamom]

Dr C has a 6 mos + waiting list

I put my dd on the waiting list the end of July...have not heard back yet.

[JTs-Mom]

I'll send you a PM with some info.

 

JT Mom

 

have you found a doc you like?

[tpotter]

I also found the same info, and it was a very major concern to us. In the end, after getting everyone's feedback, my DH and I decided that we would go ahead and try him, stick with the abx/cocktail approach (he has prescribed some additional supplements, too that we have agreed are necessary...B12, probiotics, D, etc....but mostly based on blood tests.)

 

We like the fact that he is willing to dx clinically in addition to lab work, and we didn't get stuck having to have all the expensive testing done, when it might have been false, anyway.

 

He is very reasonably priced (at least out of the Stevensville office,) and like I said, we just decided we were going to go the abx route only, unless something else made sense to both of us.

 

We have refused to do one or 2 things he suggested, gave our reason, and he wasn't thrilled, but it was ok.

 

So, I would definitely still go.

[matis_mom]

Thanks! That is just what I wanted to hear . We have an appt 2/9. I do really want to try the antibiotic cocktail approach to see if we can have some longer term improvement.... (we also have indication of Lyme exposure via Igenex).

NO WAY! We will be there at 10:00 and 10:30! We might get to put a face to the (screen) name!

[lyme_mom]

So- I want to investigate Lyme further . I made an appt with Dr B in MD. Googling his name brings up info about cases and disciplinary actions against him. I know about the witch hunt fir Lyme docs, but the details of the cases sounded very fringe (at best) to me. I didn't want to wait, or pay for DrJ in CT if I don't need to.

 

For those who have seen him, can you fill me in on some details and what you think...

 

Thanks

 

Eileen

I can tell you that you will have trouble finding a better doctor than Dr. Beals and we have worked with him for the past two years and really know him now. He is a wonderful, compassionate and extremely intelligent doctor. He loves his work and is passionate about it. I think the reprimand from the Medical Board may stem from a procedure they used to do to clean the blood for certain cancer patients. I am sure it never hurt anyone-the medical boards love to go after doctors who think outside of the box. Dr. Jones has been attacked for years and not one person ever accused him of hurting a child. I have a story for you that I think refers to the procedure that might be related to the reprimand. I happened to meet a family member of a former cancer patient of Dr. Beals one while I was getting an IV vitamin drip in his office. This man told me that they had been going to see Dr. Beals for over ten years b/c he had done such a great job with his father in law who was diagnosed with some blood cancer. Johns Hopkins wanted the father in law to participate in their program for cancer patients and the father asked if he could speak to someone who had participated in the John's Hopkins Univ cancer program from the previous year. All patients were no longer living so this man found Dr. Beals and figured he had nothing to lose to try a holistic MD b/c he sure wasn't going to live long if he did the Hopkins program. The man I met told me that his father in law went on to live another ten years and his quality of life was great and they were enormously grateful to Dr. Beals for this. He did some blood cleaning treatment on him which I am pretty sure they no longer do. He said that Dr. Beals and this man became friends over that time period. That is the kind of person Dr. Beals is so do not worry. I would not have a problem doing anything that he recommends. He addresses lyme with more than antibiotics. He heals the gut, detoxes heavy metals (so important b/c lyme hides in the body behind heavy metals avoiding antibiotics), fixes nutritional deficits (through oral and iv vitamins and minerals-believe this help ALOT! My daughter who is ten has done the Myers IV vitamin cocktail numerous times and loves how much energy she gets from it). Nothing he recommends will hurt you and he is actually kind of conservative and is also very sensitive to cost. Like someone else said, he LISTENS and decides with you what will be done. This is rare. He is also the least expensive llmd that I am aware of at 250 for the first visit. He doesn't spend as long as some other llmds might spend with you -some spend a couple hours, but then their fees are enormous. Beals gets the job done though and his first appt is adequate for an hour or more.

[philamom]

I would like to get a second opinion for my dd with Dr. Beals, but concerned about the billicin injections. Even though I feel it would be a temendous help, my daughter would not allow it. And it took me over a year to get her to tolerate needles, so not sure I want to walk that fine line. Are the injections always part of his protocol?

Melinda