posted
I was just diagnosed this past Tuesday (12/20), and the more I read about this illness, the more I'm realizing I may need to see a specialist to be properly treated. I have read that a lot of LLMDs do not accept insurance, but I don't have money to pay out of pocket, so.. If there are ones who do take insurance (preferably Medicaid, as that's what I have), or do probono cases, or some other way for someone in my position to get proper treatment.. I'd be glad for any information. Thanks to anyone who can help.
Posts: 2 | From Maryland | Registered: Dec 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I'm sorry but I think I know nearly every lyme specialist in Maryland, and I can't think of even one who takes insurance.
They have to spend so much time with a lyme patient that, if they took insurance, they would lose money on each lyme patient.
Try calling the lyme support groups in Maryland and any in nearby states. See Support Groups on the left side of the page.
Perhaps they will know of somebody.
If not, then ask if they at least know any lyme friendly doctors who take insurance. A lyme friendly doctor is one who has a regular medical practice but will also treat a lyme patient long-term.
I went to such a doctor when I was starting out. I wasted 2 years taking his antibiotics. He didn't think coinfections were important, so he never bothered to test or treat me for them. He only gave me one antibiotic the entire 2 years I was with him.
So, I won't give you his name.
Read the Burrascano Lyme Treatment Guidelines to find out how lyme should be treated. The document is here:
I got well once I switched to a lyme specialist who followed these guidelines.
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires at least 2 different antibiotics taken together to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections the patient has (including babesiosis, bartonella, ehrlichia, mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. If possible, you want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. He was the most successful lyme doctor on the planet. They came from every country in the world to be treated by him.
Welcome to LymeNet! We will help you here all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I don't know of any Lyme doctors who take insurance (particularly Medicaid) in any of the states you were asking about.
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.
Unfortunately, LLMDs are far and few between. You need to go where they are. None in DE.
Also, most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
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
Btw - I know you are new to Lymenet, but 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.
To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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posted
Well.. crap. Thanks for the information, guys. There is a Lyme group in my area which I have reached out to and am waiting to hear back. I will make sure my doctor reads the Burrascano Lyme Treatment Guidelines next time I go in, which is in a couple weeks.
Posts: 2 | From Maryland | Registered: Dec 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Too bad it isn't that simple. Your doc will not do what Burrascano says to do. That is because the Infectious Diseases Society of America has taken a stand opposite what Burrascano says to do.
The IDSA has miseducated ALL of our doctors to believe that lyme is RARE and EASILY cured (like with 2 weeks to 28 days of doxycycline, low dose).
Now, read the points I listed above about what Burrascano says. He says that lyme is worse than an epidemic and it is extremely DIFFICULT to cure. And, that lyme is a combination of numerous diseases, each of which has it own distinct treatment.
So, if you didn't know it before, lyme is embroiled in a major medical controversy and there are 2 camps or schools of thought--our lyme specialist are in one camp, and the rest of the doctors are in the other camp having been educated by the IDSA.
That is why, with this disease, it pays to become an educated patient. YOU have to know what good treatment looks like and YOU have to find someone who will give it to you.
First, you have to find a doctor willing to treat you until you are symptom free. It can take a few years to become symptom free. And, if you are not with a doc who is an expert on this disease, you will likely never become symptom free.
Lyme is so complex that it generally takes a smart doctor about 10 years of treating it before he is able to cure many people of it. That is the amount of expertise that he must develop.
There is no ABC formula for treating a lyme patient. Far from it. You will see in Burrasacano that there are many antibiotics to choose from--many.
So, the doc has to figure out for each patient what combo of diseases the person has and what medications he can take (without allergic reactions or unbearable side effects) at high doses.
This is a matter of trial and error. Just giving a person doxycycline is NOT enough.
If the person has difficulty detoxifying, the doc has to know how to detoxify a patient. Some patients are extremely sensitive and get hives, get sick from many or most foods, etc. during treatment as the diseases are being killed. So, the problems that occur as you treat lyme are many.
Study Burrascano over and over. Do all of the things he says to do that can be done on your own. So, take the supplements he says that are required and do the weightlifting exercise that he required. Eat the diet he requires while you are on the high-dose combinations of antibiotics.
Lyme depletes your body of so many things. that is why you need to take supplements--especially magnesium, and in large doses generally.
Lyme weakens your immune system like AIDS. That is why you have to do the one continuous hour of weight lifting every OTHER day. Burrascano found that that particular exercise is able to eventually get the immune system back to normal working order.
If you don't do the exercise requirement, you will likely NEVER get rid of lyme. That is what Burrascano says and that is what my lyme doctor told me at my first appointment.
I did the weightlifting and I was amazed at how it helped me. It was a real struggle, but I persevered.
If you don't obey the diet rules, the long-term antibiotics will give you yeast (thrush) in your mouth which will go into your stomach and intestines with each swallow. So, you must avoid sugar, flour, fruit, etc. while treating lyme.
There is so much that depends on the patient--obeying all of the rules laid out in the Guidelines--if you are ever to get well. So, start reading.
Ask questions here all you want.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
The explanation poster TF gave you is a very good one - please heed her advice!
You MUST go to a Lyme-literate doctor who follows the Burrascano Guidelines (="gold standard" for Lyme treatment) and has considerable years of experience in getting many patients well. Otherwise, you will be wasting time and money going from doctor to doctor who aren't Lyme-literate and most probably will get worse.
Here is a link for you to read about "Two Standards of Care":
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
So sorry you are having such a difficult time.
I want to mention you do NOT need to have IGeneX testing, but it is a good lab and I do recommend it. Medicaid should cover regular tests thru any doctor.
Just remember, a negative test does not mean you don't have Lyme disease.
Here is a "Help For You" page that can help with the cost of labs, medications, grants to assist those under 25 with Lyme related costs, free cell phones and more.
If you go to www.MarylandLyme.org and look at the menu on your left you will see DOCTOR REFERRALS.
You can find Lyme treating health care professionals there, listed by state and country. It also has links to help find alternative doctors, chiropractors, specialists in Morgellons and MTHFR.
We aren't allowed to put docs names here, so initials will have to do. In MARYLAND- Dr's RB, SC, CH, LS, and KW all MAY take some insurance. Others may too, I'm just not up to date on every practice. It would be worth you giving them a call and if they don't ask if they can help you find someone who will.
You can check other places like VA, DC, PA, etc. while there.
The Lyme Doc site also has a listing for good labs, links to find a naturopathic doctor, acupuncture and oriental medicine doctors too.
Holistic dentists, experts in mold, and even places to avoid are listed there.
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