posted
Hi! I used to work outdoors near Old Lyme, CT and think I contracted Lyme 20+ years ago.
A non-Lyme-literate, CA doctor ruled it out in 1998 after I received only .84 on the ELISA and a positive 41 KD on the Western Blot.
But I have a long list of wide-ranging symptoms. I need to find a great doctor and get to the bottom of my health issues.
I live in CA now, but used to live in NY and CT. Recommendations for an MD or DO in any of those states would be much appreciated.
Posts: 8 | From California | Registered: Jun 2017
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I'm a bit confused as to why you are asking for LLMDs' (Lyme-literate doctors) names in NY & CT when you live in CA? It would make sense to establish treatment with one in CA or are you planning on moving back to either NY or CT?
Please clarify - thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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posted
I'm thinking of moving back to NY anyway and enjoy visiting there.
I want to increase the odds of getting in to see the right doctor by casting as wide a net as possible.
I'm wondering if the particulars of Lyme disease vary a bit by region and if doctors in CT are most likely to have seen cases like mine.
Posts: 8 | From California | Registered: Jun 2017
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sharon's Friend...
Welcome to LymeNet! California has possibly the most Lyme treating professionals of any state and NY has good choices too.
Please go to www.VirginiaLyme.org and look at the menu to your left you will see "DOCTOR REFERRALS".
Click there to find the names and contact information for health care professionals in many fields who are treating Lyme & TBD's in all of the states.
Here is a list of tick borne diseases with how to diagnose (testing), a list of symptoms for each disease and treatment information.
There are indeed a lot of "Lyme-literate" doctors in CA. Some of them are pretty pricey. And they are not all equally well versed in Lyme. To make the most of my limited savings, I've been hoping to keep trial and error to a minimum.
It's not easy to know which doctors here have actually cured people who may have had untreated Lyme for decades.
I believe that word of mouth helps a lot in selecting any doctor, when it's taken with a grain of salt and additional homework is done.
An ENT doctor who happened to have a relative with Lyme advised me to look for a doctor who has been having some success in treating it. Her relative had seen a few doctors connected with prestigious medical schools without getting any better.
I thought I might try his latest one, Dr. P, since what she tried seemed to be helping him. But I waited too long to call. She is on the VirginiaLyme list. But she is no longer at that medical office.
Does anyone know if Dr. P is accepting new patients and where?
If you've been treated by anyone in CA, NY, or CT that you highly recommend or might have concerns about, I could use the input.
Much appreciated.
Posts: 8 | From California | Registered: Jun 2017
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posted
I have info about CA - am pming you -
Posts: 13117 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sharon's Friend,
You are very welcome! Sorry you missed out on Dr. P. Thanks for letting me know. I will adjust the list as needed. Too many states and names for me or anyone to keep up with!
I remember when we only had 3 Lyme docs for the entire country! Much easier keeping track back then.
Yes docs at prestigious medical schools can really stink!
Many patients think because they have a famous name behind them they should be excellent, and that is far from the truth! I know, I tried them all on at one time or another and what big toads they were!
I see Robin409285956 has PM'd you. Hoping that will help. She is in that area, so that may help with some comments too..
Good luck to you and lettuce no if we can be of help. Feel better soon!
posted
Thank you for the questions and help, Robin123!
Thank you for your understanding, Tincup! I imagine you've been through a lot trying to find the doctor that's right for you. Did you ultimately succeed? I hope you're feeling much better.
If you've had any personal experience with Dr. P in CT or Dr B in NY, please PM me, especially with regard to diagnostic talent. I've had them on the east-coast version of my short list for awhile.
Posts: 8 | From California | Registered: Jun 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
All the reports that I have say that Dr. P. in CT is really good. However, he has a 1 year wait for a new patient appointment.
I know a person who got a call due to a cancellation about an hour after she set up her appointment for 1 year in the future! So, instead of having to wait a year, she only waited about a week.
So, miracles do happen.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey back at ya..
I am not sure which Dr. B you are talking about? Sorry! As for Dr. P- very good in my opinion.
Sorry too that I don't "PM". Can't keep up and too tough for my tiny brain to learn how to do it.
I do hope you find someone you'll be happy with though. I do!
posted
Thanks for the clarification. PM sent for CT.
Lyme Disease is a clinical diagnosis made by a Lyme-literate doctor (LLMD) based on medical history, symptoms, test results, etc. You should be tested through IGeneX Labs in Palo Alto, CA. They specialize in tick-borne diseases.
The ELISA test is unreliable.
You need to be evaluated and treated by a LLMD. Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
LLMDs are far and few between, unfortunately, so you need to go where they are. At least half of all Lyme patients travel out-of-state to get proper care. There are a few good LLMDs in NY, but they are in the upstate area.
Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and "How Can I Get Better?". They are an excellent source of information.
Read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.
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