The more you know about lyme disease and its treatment, the better you will be able to assess a doctor's competence or incompetence.
You can learn a lot by reading LymeNet posts, attending lyme conferences, reading the Burrascano Lyme Treatment Guidelines, and similar documents and sources of information.
You can ask for opinions about a doctor in lyme support groups (see "Support Groups" on left side of page) and on LymeNet "Seeking a Doctor" section. You always have to evaluate the knowledge of the person giving you the opinion. Do they know an awful lot about lyme disease and its treatment, or are they new to lyme and just happy to find a doctor who won't say their illness is all in their head?
I really dislike RateMd and similar sites because I have found that when a lyme patient gets angry over the cost of treatment, they go to these sites and really trash the doctor. Also, patients who behave outrageously or don't show up for appointments or other misdeeds trash doctors rather than taking responsibility for the breakdown in the relationship.
And, as a general rule, if a patient is happy with their doctor, they never think of going to these doctor rating sites and telling the world about it. So, the ratings can be lopsided.
So, you have to come up with a lot of ways of getting info about a lyme doctor. Are they recommended by state lyme associations, have they published medical articles with other big names in the lyme community, are they being proclaimed as a success by their peers, etc.
I know some of the top lyme doctors on the east coast. I don't know anything about the docs in your area or I would be happy to send you some names.
Over the years, have kept hundreds of patient emails to me regarding their lyme doctors. I give them out to folks who ask for doctor input. Try to find someone who is doing this for lyme patients in your area.
If you give your name and address to some lyme support groups, they will generally notify you of any lyme conferences or if they are going to have a special speaker in your area. If your state has a state lyme disease assn, give them your name and address also.
I really learned so much by going to my first lyme support group special speaker meeting at which Dr. Burrascano was speaking. It was a real eye-opener and turning point for me. It made everything that I read in the Burrascano Guidelines come alive, and the important principles were made very clear to me. I even got to submit a question about my case and Dr. Burrascano answered it from the podium. That's how I learned that my lyme doctor was incompetent. (I had had some doubts, but this made it clear.)
So, become an educated patient. With this disease, you can't just put yourself in the hands of the doctor and wait to get well. You have to become an educated, active participant in the healing process.
And, the doc is the key to getting rid of this horrendous disease. I can't emphasize that enough.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
We try to match a patient to a doctor, as in whether someone needs antibiotics, and at what degree - oral, bicillin shots, IV, and which doctor(s) handle which treatments.
Whether someone will just be doing antibiotics and needs to see someone who specializes in that, or whether complementary medicine is needed or desired.
Then what kind of complementary medicine, as that is a vast subject too, as in what the doctor knows and uses.
Also whether someone detoxes very well or not. For someone who does not detox well, they need to see a doctor who knows how to handle that.
Another issue would be how much testing the doctor does. I tend to vote for more rather than less, to learn as much about your body as you can.
Also how the doctor manages co-infections - there are various opinions about that.
We are all different and so are the treaters. So I'd say the issue is getting a good match.
I think communicating with other Lyme/co patients in your area/state about doctor care is a good idea. All states have an online discussion site - yours would be http://health.groups.yahoo.com/group/illinoislymePosts: 13117 | From San Francisco | Registered: May 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I sent you the doc's name and lots of info about him.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I don't have any patient comments on the doctors in IL. There are a few states where I DO have the comments.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I went through a few docs before I settled on my current one. I also listened to TF. Eventually I chose one based upon my most debilitating co infection, and went to see the doc best known for treating it (really glad I did).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
I am new here... I had CDC positive WB back in July, positive for Anaplasma, mycoplasma pne., CNN, ebb, hhv6, and Fry labs showed possible Bart.
I am currently seeing a Lyme literate CRNP. I'm in Lancaster, PA. If you know of any highly recommended LLMD in PA or near, please let me know.
I'm an RN- can't work, drive, feel like I'm dying. Go to ER monthly with no resolve or help, obviously. I'm desperate and afraid. I'm 50 pounds overwt now, lay in bed pretty much all day, have 2 yr old little girl that I can't play with or take care of. We are sleeping on my Dads couch bc I can't be alone with her, take care if her myself.
I posted message under doctor topic, but saw your post and was interested in any info you may have for me. Thanks do much ! I also think more tests the better. In 7 months iv basically just been on doxy n azith. I don't know what to do!
Posts: 3 | From Lancaster, Pa | Registered: Jan 2013
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Luvluver88,
You are in the right place. Your post sounds like my story.
I have a 3 yr old son who has to go to daycare because I am in treatment and can't care for him like I would like.
Just wanted to let you know that you are not alone.
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Robin has it right. There are too many unknowns and too many aspects of tickborne diseases for any one doctor to be able to handle them all. And I don't personally believe anyone who says that have a 95% cure rate. If they say they improve the patient situation in most cases, that could be true.
But acute treatment is the only one that might have a high positive result. Chronic cases are a different situation altogether. And often patients do not want to know that there is no cure to a chronic disease. Look at all the things lyme people have done to try to be cured....the list is endless and we are still chasing new approaches.
Posts: 2888 | From USA | Registered: Mar 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Luvluver, I had undiagnosed lyme disease for at least 10 years before a doctor figured out what I had.
Still, I got rid of it with a top notch lyme doctor. (First, I had 2 lyme doctors who were unable to restore me to health. I had to move on from them.) It is nearly 8 years now since I completed my treatment. I have been symptom-free for over 8 years. I praise God for this every day.
Many doctors treat lyme disease, but my experience has been that only a few know enough to actually GET RID of this disease for a person.
So, I tell everyone that the doc is the key to getting rid of this disease. There is no standard ABC treatment for lyme. So, you are depending on the doctor's expertise to get you well.
When I see all of the illnesses you have, I believe that you need one of the best. I have sent you some names of doctors who should be able to help you regain your health.
Posts: 9931 | From Maryland | Registered: Dec 2007
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
TF is symptom free with the best lyme doc, but I have been to the best and am not symptom free. I feel that it sets up unrealistic expectations to think that everyone who sees the "best" will end up like TF.
Do not take any one lyme patient story as what happens to all lyme patients.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
What I have noticed on this board is that many people switch llmd's if they haven't gotten better in a few months or a year.
Regaining health after tick borne infections takes such a long time and requires much patience.
If you know you are seeing one of the better llmd's (ILADS) than you need to stick it out for a long time. There are times that another set of eyes can pick up on something that has been missed, but bouncing around from llmd to llmd does no good.
I agree with what Poppy says above...not everyone has the same experience. Not everyone has parasites (yes, its true), the same coinfections, viruses, and most important of all...the same body constitution/chemistry.
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Seeing the best lyme doctor you possibly can gives you the best chance of regaining your health.
I have at least 3 friends who went to the docs I recommend (all follow the Burrascano protocol) and they also got rid of their disease. One had it all her life (50 years) and still got rid of it completely.
No one is saying that every single person can get rid of lyme disease by going to a top doctor. Even Burrascano says that some people will have to take maintenance antibiotics the rest of their lives because they can't get to cure.
I have one friend like that. She takes antibiotics the first week of every month. She will do this for the rest of her life. She is very happy with her quality of life doing this. She went to my lyme doctor but has very little money, so he had to use treatment she could afford. No IV, expensive meds, etc.
Posts: 9931 | From Maryland | Registered: Dec 2007
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