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Does anyone know of good llmds near montgomery and bucks county PA?
Unfortunately, I think most of us have to travel outside the area to find a decent LLMD. I'm near Pottstown and have to travel 3-1/2 hours each way to see mine.

I'm currently on Dr Corson's waiting list - it's a year long.

Dr Daly, in York, has at least a 10 month long waiting list.

I did see Dr Schuchman in Chadds Ford, once. He did my testing, but since my WB wasn't CDC positive, he refused to treat me. You might have better luck if you're WB is positive. He does take insurance tho, which is an added bonus.

There are some good Drs in Ny and Nj. Check the "Great Doctors and Clinics" thread on this forum.
Thank you Nyxie63 for your reply. I have been tested three times by the Quest labs and have gotten negative results for Lyme. Did you get tested by Igenx ? Does Dr. S in Chadds Ford use Igenx. I am not sure how I get my GP to get me restested using the Igenx kit. I have all the symptoms and remember the bulls eye rash I had 5 years ago.
Any information you can provide me would be helpful !!
It's a wide-spread opinion among a lot of lyme folks that Quest pretty much stinks as far as lyme testing is concerned. Even for the best labs, the testing isn't 100% conclusive.

Dr S in Chadds Ford uses MDL for all his testing and mine were done through them. He believes that Igenex gives "too many positive results". Still, MDL is a good lab by most accounts. He'll also run PCRs for co-infections as well as Elisas. And he bills this to your insurance company. Mine were completely covered.

One way to get around the GP is to order a kit from Igenex and then go to a walk-in clinic or medical treatment place and have them draw the blood.

Just remember, a negative WB doesn't mean you don't have lyme. In my case, the only lyme-specific band (out of 8 total that showed up) on my Wb was an IND band 23 on the IgM. My LLMD dx'd me through symptoms. Lyme is a clinical dx anyway, so positive test results are nice to have, but aren't really the determing factor.

Did you tell your GP about the bullseye rash? Maybe they can put you on abx until you can get in to see an LLMD?
Thanks Nyxie63. I did tell my GP about the bulls eye rash about 5 years ago and was treated with short term antibiotics. However, he does not seem to know much about chronic lyme. Who was the LLMD that diagnosed you based on your results..was it Dr.S in Chadds ford? Do you know of walk in clinics that will do the blood draw and process the IgenX kit? How much does the testing through IgenX cost if Insurance will not cover ? I am currently on Abx (biaxin) for a sinus infections and that seems to help with some of the symptoms.
Thank you for all the information that you are providing me ..this is so helpful !!! I am not sure how I go about getting my insurance to cover this. I guess once I am diagnosed it should not be a problem ...but I need an LLMD to diagnose me.
[QUOTE=lyme100;3498406]
Thank you for all the information that you are providing me ..this is so helpful !!! I am not sure how I go about getting my insurance to cover this. I guess once I am diagnosed it should not be a problem ...but I need an LLMD to diagnose me.[/QUOTE]

Hi there :) I hope you find a good doctor relatively close to where you are- traveling to a LLMD every month is no fun. :( Definitely see if your LLMD is in your network- I know a lot aren't, but there are some. I had Anthem when I first started seeing my dr., and it recently switched over to Cigna. Thankfully the doctor I see is a GP, and in network- and so far, I haven't had any problems with coverage for treatment (even bi-monthly lab work).

Best of luck to you!
[QUOTE=lyme100;3498406]Thanks Nyxie63. I did tell my GP about the bulls eye rash about 5 years ago and was treated with short term antibiotics. However, he does not seem to know much about chronic lyme. Who was the LLMD that diagnosed you based on your results..was it Dr.S in Chadds ford? Do you know of walk in clinics that will do the blood draw and process the IgenX kit? How much does the testing through IgenX cost if Insurance will not cover ? I am currently on Abx (biaxin) for a sinus infections and that seems to help with some of the symptoms.
Thank you for all the information that you are providing me ..this is so helpful !!! I am not sure how I go about getting my insurance to cover this. I guess once I am diagnosed it should not be a problem ...but I need an LLMD to diagnose me.[/QUOTE]

Dr S was the one who ran the testing, but Dr H in Hyde Park, NY is the one that dx'd me.

I think some place like UrgentCare or another "doc in the box" place can do the blood draws for you. Shouldn't cost too much and your ins might cover it.

I'd say start off with the Igenex WB series (IgG and IgM). It runs a little under $200 for both tests.

Just to let you know, my LLMD doesn't take insurance. I have to pay for the office visit and any supplements out of pocket. They're aware enough of people's cost restraints to run any non-lyme testing through my ins co's lab of choice.

Seeing a dr who didn't take ins was a hard decision to make, considering I'm not working anymore and our finances are seriously stretched. It's been less than a month since I got my dx and have started treatment, so I'm still trying to figure out the out-of-network reimbursement thing.

Hope you find a good doc soon. Please keep us posted. :)
Thank you so much Nyxie63, Ticker and datgrlstef !!!!!! You guys are so supportive ...I appreciate all of the help !

Ticker : I am in SE PA, can you share the names of good LLMD's in NJ. I realize that I am going to have to travel to get the right treatment.

For now, I guess I am going to have to pay for the treatment myself.

I got to Dr. Rax's (NY) web site , but there were no phone numbers to contact the clinic. I am not sure if it is still operational. I saw a few posts indicating he was really good.

I called Dr. Z 's office in Fairfax, VA as well, waiting to hear back from them. Just need a good LLMD I can see soon !!

Convinced I have a relapse of lyme, my symptoms match up well to the list that has been published. Have an appointment with the neurlogist tomorrow to review results of my MRI. Not sure if she is lyme literate and if I am going to be shuffled from one specialist to the next.

Does freeze dried garlic really effective as a supplement ? I would like to order some good supplements to keep me going ... Any recommendations ?

THANK YOU TO ALL !!!
Hi there and welcome . Dr. Kenneth Singleton is in Towson Maryland . It might be a couple hours drive but worth it. He will do tests from IGenex and go from there. He does not take insurance but from my view, even though I'm broke,, it has helped tremendously. He just wrote a book, "The Lymes Disease Solution" which is also helpful. good luck to you.
Hi lyme100. Dr. R. is in Manhattan.

The Lyme doctors I know of in NJ who come highly recommended are Dr. Emilia Eiras in Jackson and Dr. Leslie Fein in West Caldwell.

Good luck!
Thanks ticker and nyxie for your help and advice !
I have decided to go with a doctor who came highly recommended by the local lymePA group and I was able to get an appointment for next Thursday. Going to Dr. M in Rockville, MD.
Was not able to get an appointment with any other LLMD before that.
Can't wait to get better soon !!
Good luck! Let us know how it goes.
[QUOTE=ticker;3505882]Good luck! Let us know how it goes.[/QUOTE]

Ticker and all of the helpful folks on these boards,

A lot has gone on since I posted ..... but I finally have a Lyme diagnosis.
I went to Dr. M in MD and got my bloodwork results from Igenx during my phone appt this evening. Do not have results in hand, but Dr. M indicated that my IgM bands were CDC positive. I am currently on 100mg Minocycline and have an in person appt in May.

Dr.M also discovered a nodule on my thyroid during examination and since have had an ultrasound - is a multinodule goiter and am currently waiting for results on the biopsy.

I am so glad that I went to an LLMD and got my bloodwork to the right labs. All my testing from Quest had come back negative and had I stayed with my GP would still be suffering without a path forward. It was worth it to travel to MD and to deal with insurance not covering the costs etc to atleast have some resolution to my symptoms. Atleast now I know I can get on the path to getting better ........

This board has been such a fabulous resource and you guys have been so helpful. I am so grateful ....THANK YOU ALL.:)
Congrats on getting in to see Dr M! May you be on your way to wellness! :)

Btw, where did you get your thyroid biopsy done? I've had 3 so far and am facing #4 in a few weeks. Usually get it done at Phoenixville hospital because I like the way they do things there.

And good luck on your biopsy results! May it be benign! :)
Btw, where did you get your thyroid biopsy done? I've had 3 so far and am facing #4 in a few weeks. Usually get it done at Phoenixville hospital because I like the way they do things there.


Thanks Nyxie63 for your kind words and advice so far !

I got my biopsy done at Central Montgomery Medical Center only because it is closest to where I live.
Do you have multiple nodules as well ? I hope it comes out benign as well.
lyme100,
I also have multiple nodules. A huge one in my left lobe I've named Herbie. :D A few smaller ones in the right lobe. Had an "iffy" biopsy on Herbie last time, so probably due for another one. Did have some good news in that my nodules are apparently shrinking. yay!

Thanks! :)
Nyxie63,
I am so happy that your nodules are shrinking. That is good news !
How long have you been battling lyme? Do you have any co-infections?
Which LLMD do you go to?

I was just diagnosed with Lyme and Bartonella. I go to see my LLMD in MD on May 13. Have been battling really bad headaches and sinus infections. I am currently only on oral Minocycline, 100mg.

Thanks
lyme100
Lyme100,
Thanks! :)

My LLMD (Dr H in NY) thinks I was first infected some 30 years ago. :eek:

Apparently, I'm tick candy. :D :mad: :rolleyes: Been bitten so many times, I've lost count.

I had a bad bout of what we thought was mono when I was 14 and had some minor, but annoying, symptoms ever since. About 3 years ago, things started to get stirred up. I was bitten yet again last summer by 2 deer ticks and that's when my symptoms really started to get bad. The doc thinks I kept getting reinfected over the years and my immune system finally couldn't handle the bacterial load.

All my testing for co-infections have been negative, but I'm being treated for babs and bart anyway, due to symptoms. I've only been in treatment for a little over 2 months now. See the doc again on May 12th.

My doc's really aggressive, so they pile on the meds. LOL! Unfortunately, I tend to have reactions to most meds anyway, so it's been interesting. First I was on doxy and plaquenil. Couldn't handle the doxy. Then they tried Mino, Malarone, and Levaquin. Nope. Had really bad side effects from those (couldn't even keep the levaquin down). So now, I'm on zith, ceftin, plaquenil, and nystatin (for yeast). So far, so good. *knock wood*

I'm hoping to beat the lyme down a bit and then try the mino/malarone/levaquin regimine again.

At least you're on a maintenance dose for now. That's something.

Did the headaches start shortly after you started the Mino? If so, you might want to mention that to your LLMD. Mino can cause bad side effects, migraines being one of them.

Are you keeping a daily symptoms log? I've found that really helps to keep track of what happened when. I call it my "brain in a book". LOL! It's a really good way to see what's improving, if any med is causing side effects, and what's getting worse or staying constant.

Keep us updated on how your LLMD appt goes. Get copies of all your testing (friendly reminder). ;)
Hi Rich, welcome to the board!

Lyme symptoms do wax/wane and migrate around the body. Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress. It is important to be tested for these by a Lyme lab such as IgeneX in Palo Alto, CA. Lyme and Babesiosis can cause heart palpitations like you describe.

In my opinion, seeing a knowledgeable doctor is the most important thing you can do. Many doctors do not understand these diseases and undertreat them. Dr. Kennth Singleton in Towson, MD comes highly recommended. Are you closer to NJ?
[QUOTE=ticker;3591865]Hi Rich, welcome to the board!

Lyme symptoms do wax/wane and migrate around the body. Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress. It is important to be tested for these by a Lyme lab such as IgeneX in Palo Alto, CA. Lyme and Babesiosis can cause heart palpitations like you describe.

In my opinion, seeing a knowledgeable doctor is the most important thing you can do. Many doctors do not understand these diseases and undertreat them. Dr. Kennth Singleton in Towson, MD comes highly recommended. Are you closer to NJ?[/QUOTE]

My symptoms have not been too bad lately so it is hard to convince some people. I was told it could be psychosomatic.

I am about 25 minutes west of Philly and have an appointment with Dr. L. in MD, not far from S. It will cost me out of pocket, but what can I do.
Ticker - can you offer an advice to me here in westchester co., ny? started 5/10 with neuro symptoms, tested pos for lyme - 3 weeks amox - little improvement - then 2 more weeks doxy - not much better - what now? help!!
-Steve





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