posted
Hi all. Believe I got infected in 2009 - symptom slowly progressed over the years. Joint pain, sleep problems, muscle/tendon pain, inflammation, foggy brain/memory issues, blah, blah... everything on the list, check it off, I've got it. I'm really miserable and desperate for help. 20+ doctors have no idea what is going on with me, all tests negative except for Lyme (Lyme antibodies). Last doctor also treating for Candida (though didn't test for it). However, I've not been happy with his style - very vague and don't instill a sense of security that he knows what he is doing, or has treated many chronic Lyme patients.
Anyone have a recommendation for MI, OH, IN, IL, WI (states around the Great Lakes)? I'm willing to travel within reason. I'm in Southeast Michigan.
Thank you - and bless you all
Posts: 4 | From Ann Arbor, MI | Registered: Nov 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Hi, and welcome to LymeNet! Until others come along who know the good docs in the states you mentioned, I suggest you look at Support Groups on the left side of the page.
Contact all of those near you and ask for the doctors who are getting people well.
Until you get to a doctor who specializes in lyme, you will get virtually nowhere. You want one whose entire practice is lyme, or at least 50% of the practice is lyme. That is how a doctor gets expertise in this hard to treat disease (which is really a number of diseases).
I got well once I asked a lyme support group for a doctor who followed the Burrascano protocol.
If you are not familiar with that protocol, it is here:
To get rid of lyme, as you will see, requires combinations of antibiotics taken together. The dosages required are shown on page 18 and following.
You need at least one antibiotics that can attack the cyst form of lyme. Flagyl (metronidazole) and Tindamax (tinidazole) are two that kill cysts. See pages 12 and 13.
So, when asking for a doctor, ask if he follows Burrascano, if he believes in and treats all the coinfections, if he gives antibiotics in combination and at high dosages, and if he will prescribe a cyst buster like Flagyl or Tindamax. (Many won't.)
If possible, you want a lyme specialist who has treated hundreds or thousands of lyme patients.
With Burrascano style lyme treatment, I started feeling better in a few months. And, I was symptom free in 8 months, even though I had had lyme, babesiosis, and bartonella for at least 10 years.
We all roamed from doctor to doctor until we found out about lyme support groups, lyme websites, and lyme specialists.
I went from doctor to doctor for 10 years before one thought to test me for lyme.
So, now you can make great progress! We will help you here all we can!
The doc is the key to getting rid of this horrendous disease. Can't emphasize that enough. The doc is the key!
I sent at least 5 of my friends to Burrascano style lyme specialists and all of them got well. That can be you if you persevere and ask around and find out all you can about the lyme specialists in your area.
Expect a wait to get in with the best doctors.
Read and STUDY the Burrascano protocol. Then, you will be able to tell if a doctor is giving you good treatment or not. This is why education is a must with this disease.
I wasted 2 long years with a doc who gave me lousy treatment. Then, I studied Burrascano and decided to go hear him speak.
When I did, it was obvious that he knew so much more than my current "lyme doctor" (recommended to me by a lyme support group leader).
Then, I called another support group and asked for a doc who did everything Burrascano said to do and that is when I hit the jackpot.
So, if your brain can handle it, study the protocol and especially the meds that must be used to treat lyme and the various coinfections.
If you ever feel that you know more than your doctor regarding lyme, then it is time to move on to a new doc.
By finding out all you can before going to a lyme doctor, you will be able to avoid the bad ones and avoid waiting months for an appointment just to find out that the doctor doesn't know enough to help you.
If it turns out that there is nobody any good in your area, be prepared to travel further. Many lyme docs here in the east will do telephone appointments with their patients so you only have to appear in person once every 6 months or once every 3 months. So, that cuts down on travel quite a bit.
Let us know how it goes!
Posts: 9931 | From Maryland | Registered: Dec 2007
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Hi cdemetri So sorry you are miserable. . . We will try to help you.
Here is a link to a support group in Ann Arbor. Contact them and request LLMD's in your area. Ask for personal references from other Lyme sufferers and any feedback they can provide about them.
As TF stated, finding the best doctor is the difference between getting well or wasting your time and money and health.
posted
Thank you to all who responded! Any/all information is very helpful. This is a new journey and I'm glad to have finally found the cause for all these vexing health issues! And it is also a bit overwhelming trying to sift through good information vs. poor advice. I've contacted my local support group leader and will be reaching out to the suggested physicians/networks.
I can't thank you enough for being so supportive!
Posts: 4 | From Ann Arbor, MI | Registered: Nov 2017
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I am from the Ann Arbor area as well. Though I have probably had Lyme for 7 years, I am pretty new to this journey.
I started seeing a doctor an hour a way, and although has says he's treated hundreds of patients, his treatment plan is very narrow and aggressive. He's a 100% antibiotics guy and does not seem to necessarily line up with Burrascano.
I have no doubt that he has cured people, but I have realized in this journey so far that not every LLMD is going to be right for you. Find out as much info as you can and explore your options thoroughly.
I still feel like I am drowning in a sea of information to weed through and I just want a doctor I feel will be able to work with me well.
Good luck. Let me know if you find anyone you like!
Posts: 9 | From Michigan | Registered: Apr 2017
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posted
@Kamaji, I hear you. There are so many different approaches and it is hard to know which will be successful! I did read up on the Burrascano guidelines, and they make sense to me. I also watched the PBS documentary "Under Our Skin" which was VERY informative (and, pretty freaking scary).
I am approaching this like I do cooking -- look at a bunch of different recipes for the dish I want to cook, and then see what suits me out of the various parts & pieces. I have started the supplements in the Burrascano guidelines - I figure it can't hurt anything but the pocketbook - and will discuss the rest with my LLMD at my appointment tomorrow.
Posts: 4 | From Ann Arbor, MI | Registered: Nov 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Believe me, "Under Our Skin" is NOT a PBS documentary.
Instead, it was produced and directed by Andy Abrams Wilson after he watched what his sister went through when she contracted lyme disease.
The film presents the medical controversy that has enveloped lyme disease for at least 30 years now.
Posts: 9931 | From Maryland | Registered: Dec 2007
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