posted
Hello, I'm a MN native. Looking for LLMD in MN. I have many Lyme symptoms and have chronic abdominal pain and nausea. Recent weight loss is very concerning. Regular MDs not responsive and I'm full of anxiety and depression.
Thanks for any help.
Posts: 1 | From Minnesota | Registered: Sep 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
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Welcome to LymeNet! You are wise to ask for a doctor here. And, you are absolutely correct that regular doctors are not going to help you.
You need to get to a doctor who specializes in lyme disease and get his opinion as to whether you have it or not.
I am not from your area, so I don't know the doctors there. So, until others come along, get in touch with the lyme support groups in your state and nearby states.
See Support Groups on the left side of the page. Contact as many as you can and ask them for names of doctor who are getting folks well.
This is what I learned in my over 13 years in the lyme world: Many doctors treat lyme disease, but only a very few know enough to get rid of it for a person. You want to find one of those few.
Otherwise, you will treat and treat for years or even your whole life and the disease will just keep coming back.
Also, with lyme, there is no substitute for an educated patient. The easiest way to educate yourself on this disease and its treatment is to read the Burrascano Lyme Treatment Guidelines found here:
Look at the list of common lyme symptoms on pages 9-10. Make a list of all that you have. This is very important as lyme is primarily diagnosed based on symptoms.
So, take your time and make a very good written list. Take that to your first lyme doctor appointment.
Also, read through small sections of the Guidelines as you have time. The more you can understand about how lyme is treated, the better off you will be. You see, you need to be able to evaluate any treatment that a lyme doctor gives you.
You need to be able to tell if it is good treatment or lousy treatment. Before I read the Guidelines, I wasted 2 whole years taking antibiotics from a doctor recommended by a lyme support group.
I only got a little better, and each time I stopped the meds, in 2 weeks I became as sick as I was in the beginning. Taking antibiotics for 2 years is no small thing. But, my treatment was WORTHLESS. I don't want you to make the same mistake.
So, below I will summarize the key points in the Guidelines regarding how you must treat lyme disease in order to get rid of it.
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.
I had chronic nausea and abdominal pain until I finally got diagnosed and got good treatment. Most lyme patients also have anxiety (we call it lyme anxiety) and depression. The anxiety alone puts you in a living hell.
If you cannot find a good doctor in your area, write to me and I can give you the name of a good doctor in Maryland that you can trust to give you proper treatment. And, you will only have to fly here in person once every 3 months. He will do telephone or skype appointments the other months.
Please do a lot of looking into any doctor you are thinking of seeing. Don't want you to spend the big bucks on a doc who really doesn't know enough about lyme diease to get you well. That is all too common.
If you find that there is nobody good in Minnesota, then be willing to travel. At least half of all lyme patients go out of state to get good treatment. Many fly.
But, with a good lyme specialist, you can regain your health. The doctor visits cost money, and good lyme docs do NOT take insurance. But, your insurance will pay for the routine tests and prescriptions. So, be willing to pay for expertise.
Put the very high cost of the first appointment on a credit card if you need to, and pay it off over a number of months.
We will help you here all we can. I really believe that in the middle of the U.S. the docs are not as good as the ones we have on the east coast, because we have so much lyme here in the east. Our doctors get a whole lot more experience with the disease and get to practice on so many more cases.
And, when I refer to a lyme specialist, I mean a doctor whose entire practice is just seeing lyme patients, or at least 50% of the practice is just lyme. Also, it takes a smart doctor about 10 years of experience treating lyme before he is able to handle most cases of lyme. Before that, he will only be able to handle simple, recent cases.
This is a very complex disease (or, really a number of diseases--called coinfections) and it is very difficult to cure.
So, give it your best shot. Find the very best lyme doctor you can possibly afford and be willing to do what it takes now. As the disease progresses, it becomes more difficult to cure.
I finally went to a lyme specialist who followed the Burrascano protocol (my third lyme doctor) and I became symptom free in 8 months and finished with treatment in 13 months.
That was over 11 years ago and I am still symptom free, enjoying my life. I have the same life I had before lyme disease.
I had undiagnosed lyme disease (and babesiosis and bartonella) for at least 10 years before a doctor finally tested me for lyme. So, I was sick for 10 years going from doctor to doctor looking for help. Still, I got well.
The doc is the key. Remember that. The doc is the key to getting your health back.
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.
Unfortunately, LLMDs are far and few between. You need to go where they are.
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":
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