You need to be evaluated and treated by a Lyme-literate doctor (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.
Scroll down for financial help, etc., available from several sources.
The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistance program to provide assistance for initial Lyme-related lab tests to patients who demonstrate true financial need. I think coverage is up to 75%. View on www.lymetap.com
Read the books written by the top LLMD, Dr. H titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". They are an excellent source of information.
Also "Cure Unknown" by Pamela Weintraub. Check your local library or buy it used on Amazon.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Sorry but I don't know of anybody good in or near Long Island.
Good lyme docs are few and far between.
Also, none of the good lyme doctors I know take insurance. They just can't because it would cause them to lose money.
They will have to spend a LOT of time with you at your first appointment to try and figure out what to test you for and possible treatment.
A lyme specialist spends at least one hour with you at the first appointment, and generally 1 1/2 hours because tick-borne diseases are so complex. They have to ask you a LOT of questions to figure out if it could be lyme and its coinfections. But, insurance will not pay for that time.
So, many people in your situation get their church or family to pay for that very expensive first appointment.
I hope you can find a way to get to a good lyme specialist.
Look at the list of symptoms on pages 9-10 of the Burrascano Guidelines. The more symptoms you have, the more likely that you have been suffering with lyme disease and its coinfections.
If you were improperly treated for lyme and bartonella back in 2009, then it is extremely likely that these are your diagnoses. See what Burrascano says in the following quote:
"Undertreated infections will inevitably resurface, usually as chronic Lyme, with its tremendous problems of morbidity and difficulty with diagnosis and treatment and high cost in every sense of the word." (page 3)
Posts: 9931 | From Maryland | Registered: Dec 2007
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Yeah it is crazy so few doctors who know anything despite the number of cases.
I have a large number of the symptoms (at least 2/3) when I did Dr. B's checklist it was an eye opener.
If anyone knows of a doctor who is somewhat reasonably priced anywhere near LI that doesn't take insurance that would help. I can try to make it happen even if I have to travel.
Posts: 5 | From Long Island NY | Registered: May 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Can you travel 150 miles from Long Island into Pennsylvania? I know a doc who could see you right away.
$900 for the first appointment. It is a 4 hour appointment with the doctor himself. After that, routine appointments are $175 (generally you have one appointment per month).
The other lyme specialists that I recommend in your general area are either not taking new patients, or have a 1 year wait to get in. And, they all cost more than $900 for the first appointment.
Let me know if you want this doctor's name.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
It would be hard, but I would appreciate the info so I have the option if nothing else pans out in the next couple of weeks.
That is expensive but much more reasonable than the one I looked into upstate NY (who is probably booked up anyway), because the routine appointments are very fair.
Not sure if you would know the answer but according to Dr. B's guide if I do get treated it sounds like it could be IV. Do you know if that would be possible despite the distance and without insurance?
Posts: 5 | From Long Island NY | Registered: May 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
OK. I sent you the name. I truly hope that this all works out for you and you will no longer be disabled--just like the doc I am recommending to you!
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thank you so much for the help! It means a lot, I truly hope so, ..fingers crossed.
Posts: 5 | From Long Island NY | Registered: May 2017
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey moto from LI,
Welcome to Lymenet. Sorry to hear of your situation. Let's see if we can help.
I am sharing below a large list of Lyme treating health care professionals names and contact info for you to consider.
Narrowing down your choices by contacting their offices and reading their websites in advance may help pick someone more in line with your needs.
Some do take insurance and some charge MUCH less than others and it has nothing to do with their abilities.
If you go to www.MarylandLyme.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 treating Lyme & TBD's in your state (or any state). You may want to review options in states near-by also.
There is also a page with support group information, one for alternative medical professionals, educational conferences across the country, labs and their contact information, one for mental health providers, MTHFR and Morgellons providers.
There is also a list of TBD with how to diagnose (testing), a list of symptoms for each disease and treatment info with links to the treatment guidelines.
Here is a "Help For You" page that hopefully you can find some cost-saving tips to help you out.
posted
Thank you Tincup for taking the time to help. I will start going through the information you sent.
It has been great getting help on here, at the risk of sounding dramatic it often feels like I am figuring everything out on my own even though I do have people who want to help.
Hopefully now I can get on the right track!
Thanks again!
Posts: 5 | From Long Island NY | Registered: May 2017
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