posted
I have not yet been tested or diagnosed with Lyme.I have been dealing with symptoms of chronic lyme for a cpl years now. My current MD wrote a script for a blood test, but i would have to go to labcorp or quest. Iwould like to do the igenex test but I'm having trouble finding a lab that will draw my blood to send out for the test. ideally, id like to find a LLMD that take amerihealth insurance..
Posts: 17 | From Jersey City, NJ | Registered: Mar 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Sorry to say but there is nobody in New Jersey that I recommend. Many doctors treat lyme disease, but very few are really good at it and can cure a person of it.
So, I hope you are able to travel to see a good lyme doctor. If you are willing to come to Maryland once every 3 months, let me know and I will give you the name of a very good lyme doctor.
It IS difficult to find a lab that will draw blood to send to Igenex. And, even if you find one, it is best for you to do the mailing to Igenex yourself to ensure that the blood does not sit around.
Blood labs are not used to having to follow the Igenex requirements. So, they can do it wrong or just refuse to do it. That is why most folks get their blood draw for Igenex testing when they first go to a lyme specialist.
This way, everything is done correctly, including selecting the correct tests.
Very, very few lyme specialists take health insurance. But, if you have "out of network" coverage, then you can see a lyme specialist and send the bill in to your insurance company yourself. This way, you will get some reimbursement.
Just know that it costs hundreds of dollars for the first appointment with a lyme specialist. The one I recommend costs $600. I know one in NJ who charges $400.
The first appointment is extremely expensive because the specialist will spend at least an hour with you. The followup appointments are not nearly as costly because that is just 1/2 hour with the doc.. So, for that reason, you don't want to switch lyme doctors if you can help it. No sense paying that high fee for a first visit over and over again.
So, I hope you can see the wisdom of going to a doc right off the bat who knows enough to get you back to normal if not cured.
You can look at the Burrascano Lyme Treatment Guidelines to learn more about lyme disease and the infections that always travel with it, called coinfections.
On pages 9-10 there is a list of common lyme symptoms. The more of these you have, the more likely you DO have lyme disease.
Then, look at pages 25-27 and see if you have symptoms of any of the coinfections.
Make a very complete list of symptoms. Take that to your first lyme doctor appointment.
Lyme is diagnosed based on medical history, symptoms, results of lyme tests, and response to a trial of lyme treatment (antibiotics). You will see that stated by Burrascano on page 7.
As he says there, none of the lyme tests are reliable, so even if you get a negative test result, you can still have lyme. That is why you want to go to someone good right off the bat.
A good doctor knows to consider symptoms and give a trial of antibiotics to see your reaction.
Igenex testing is $200 for just lyme tests. For a complete test panel including the coinfections, it is $600. If you happen to be on Medicare, Medicare will pay. Otherwise, you must send in the money with the blood samples and then afterwards seek some reimbursement from your insurance company. Don't expect to get a lot of reimbursement.
A good lyme doctor wants to test you not only for lyme but also for babesiosis, bartonella, and ehrlichia. These are the 3 most common coinfections that lyme patients get along with the lyme. In Maryland, every person with lyme also finds out that they have babesiosis and bartonella. They call these "the big 3" because they are so prevalent.
So, you can see the money you will have to spend just for testing.
Let me know if you want the name of the lyme doc in Maryland. And, welcome to LymeNet! We will help you here all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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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.
Btw - please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme. Thanks.
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