Middle-of-roader LLMD needed

[eljomom]

I have been on pandas forum for dd7 for over a year. She still has tics, and some ocd, after a year of sudden onset, which was preceeded by minor symptoms. On low dose zith. for 7 months. Had only w.blot igenex. was "negative" but still had some + bands. pandas doc said "move on. not lyme" last week another of my kids, who has had some off and on throat clearing, sep anx and ocd over the years, started with major eye blinking, stretching, scrunching tics last thursday. she had been doing some evening up/touching stuff for a few months. and my son is doing the touching too. all 3 of them get tick bites over the years. my oldest has had less tick bites...she is kid #4, who had a year of one major tic that resolved.

 

the latest child with issues has also complained of headaches off and on for over 3 years, and occasionally her chest hurts, throat, etc. finally convinced ped. to run w.blot, and only IgM Band 23 was positive (Labcorp). I am NOT one to be on the extreme end of treating Lyme without some sort of positive testing. I know, I know, it's clinical. But I do feel that some kids are being treated/overtreated with major drugs without ONLY a clinical diagnosis. And with Lyme symptoms mirroring so many other things, I hate to say, I'm not comfortable with that. I also know that there may be times when a kid was bitten years ago an untreated, and that regular Infectious Disease docs ONLY follow CDC guidelines, and don't believe in Igenex.

 

So I am looking for any recommendations for a ped. Lyme specialist who is middle-of-the-road. I have only heard of Dr. Levin in Falls church, VA and Dr. Beals/Debbie McCabe in D.C., and I am not totally comfortable with either of those options. Are there any other docs who are medically based (not over the top integravite/holisitic) anyone can recommend? I live in Warrenton, VA, so VA/MD/DC is within drive for us.

 

Thanks.

[SSS]

God, I am in the same boat. I don't have advice, but I will tell you where we are at-

my pandas dd6, we did a labcorp. WB, and only IgM p23 came back positive.

Feedback from other lyme people (another board I lurk) said 'it is lyme.'

Dr. Jones has written: this 1 positive band is lyme.

Me, I want to Igenex test now-

but..........

I think it's lyme.

I am going to make an appt. with an LLMD, and get Igenex testing, and co-infections, bartonella might (probably?) be at play here.

G/L

would love to hear how you progress with this/decision.

Sarah

[eljomom]

S&S---your sig line sounds like my dd7. camk 168. high antineuronals. chronic unchecked.

did IVIG help at all? do you have tics too (not just ocd)?

wonder what llmd you will see.

will keep you posted.

 

 

God, I am in the same boat. I don't have advice, but I will tell you where we are at-

my pandas dd6, we did a labcorp. WB, and only IgM p23 came back positive.

Feedback from other lyme people (another board I lurk) said 'it is lyme.'

Dr. Jones has written: this 1 positive band is lyme.

Me, I want to Igenex test now-

but..........

I think it's lyme.

I am going to make an appt. with an LLMD, and get Igenex testing, and co-infections, bartonella might (probably?) be at play here.

G/L

would love to hear how you progress with this/decision.

Sarah

[philamom]

I just wanted to chime in to mention that Dr. J does a very thorough evaluation. He would not recommend treatment with bands present without clinical symptoms. :-)

[SSS]

We will have to drive to the bay area, CA

I called an excellent LLMD office yesterday- I can get in possibly Monday (office of 3 practicing Dr.'s, rotate between them) SF Mom has helped me tremendously.

 

Here is my problem: My DH is tired of the 'chase' we have been on for over 2 years, and the $$$$$ in our chase.

Monday would be ideal for us, because he is off work, I can get sitter for other child, it is before school starts, and it is an all day deal. He and I can take daughter. He does want her treated (of course) but he wants a THIS IS IT.

I would prefer to have an Igenex in my hand with more indication.

And of course, this appt. is pricey, so I would like it to be a not wait and see thing.

 

*sigh*

 

My daughter has verbal tics. Coprolalia. Fevers that come and go. Anger. We are not in a good space right now- The 1st IVIG, we had a terrible time after it was done- herx? The 2nd IVIG, the first 2 weeks were glorious. Then slowly started to back track. Yes, I do think they pulled us out from the very darkest days, but we are not 'fixed'.

[lyme_mom]

If you meet either dr Beals or Debbie McCabe you would be impressed. There are many misconceptions about Lyme literate doctors but if you see one of them you will see how very good they are and that they are appropriately cautious. I would not seek a "middle of the road" llmd but one with a track record of getting rid of Lyme-Beals - Debbie McCabe and dr jones in new haven have successfully treated patients for years.

[lyme_mom]

If you meet either dr Beals or Debbie McCabe you would be impressed. There are many misconceptions about Lyme literate doctors but if you see one of them you will see how very good they are and that they are appropriately cautious. I would not seek a "middle of the road" llmd but one with a track record of getting rid of Lyme-Beals - Debbie McCabe and dr jones in new haven have successfully treated patients for years.