posted
I am looking for a doctor for my wife. Her bite was about 6 months ago and was just tested positive. Our primary Dr just started her on her second two week cycle of doxy but it doesn't seem to be doing much for her symptoms.
Looking through the forum here I see some post about DC and northern VA. I was hoping there would be some or one doctor closer to the Hampton Roads area or Richmond, VA. If we have to drive to DC so be it, it's worth it, but closer would be better.
Does anyone have suggestions?
Posts: 2 | From Suffolk, VA | Registered: Jul 2016
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Can you travel to MD? If so, I can suggest a good LLMD.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
See Support Groups on the left side of the page. Contact all of them in Virginia and neighboring states. Ask them who are the good lyme specialists in the area.
This will take time and a lot of effort.
The other approach is to ask me for the name of the doc I recommend near D.C. I know he is good because I have been keeping up on the good lyme doctors for at least 12 years. I have about 6,000 emails from lyme patients and many talk about their doctors. That is how I amass info on the doctors in my area (who has gone bad, who has retired, who has improved, etc.).
From what I know, your area doesn't seem to have anyone as good as what we have around D.C. There is nobody I know of around southern Va.
Once you go south of D.C., the lyme doctors are few to nonexistent. So, nearly everyone comes to the D.C. area for treatment.
You would only have to drive here once every 3 months. You would do monthly telephone appointments in between.
It is worth it to drive here for good treatment. The doc is the key to getting rid of this horrendous disease. I can't emphasize that enough.
The doc is the key. Many doctors treat lyme, but very few know enough to get rid of it for a person. Very few. So, the vast majority of patients don't get cured. They just treat for year after year. Your best chance of getting cured is to go to the very best lyme doctor you can afford, regardless of location.
At least half of all lyme patients go out of state for their care, and many fly. Many states don't have any lyme doctors.
I had undiagnosed lyme disease for at least 10 years. I went from doctor to doctor until finally an endocrinologist decided to test me for lyme. (This is how bad it is out there.)
My primary would only give me 30 days of doxy. So, that is the normal course of events when you test positive.
I called support groups and went to 2 lyme doctors so-called who had regular medical practices and took insurance. They didn't know enough to get me well. After 2 years of that, I then switched to a doc who followed the Burrascano Guidelines. He only treated lyme disease 100% of the time. (That is how a doc develops expertise. This is a true lyme specialist) He didn't take insurance. He was expensive. In 8 months, I was symptom free and in 13 I was finished with treatment.
He tested me for coinfections and treated me for the ones I had (babesiosis and bartonella). The insurance-taking doctors had never done that. You cannot get well until you treat every single tick-borne disease that the bite gave you.
So, that is how I learned about lyme doctors. I have been well for over 10 years. I have the same life and the same brain that I had before lyme disease. I stick around here just to help folks get through the lyme doctor learning curve. I send them straight to the best doctor so they don't have to spend years treating with a doc who doesn't know enough to get them well.
Get her to a lyme specialist asap. The primary has no idea how to treat this complex disease. And, everyone in this area who has lyme also has babesiosis and bartonella. The ticks around here carry all 3.
So, if you want the name of the doc I am recommending to everyone on the east coast from Pa south, let me know and I will send it to you with lots of info also.
If you have not yet done so, please look at the symptom list on pages 9-10 of the Burrascano Lyme Treatment Guidelines. Use that to make an extremely complete list of your wife's symptoms. You need to take this list to your first lyme doctor appointment.
The symptom list is a major part of diagnosing and treating the patient. These show the doc which diseases she likely has. (Nobody has just lyme.)
Be prepared for an expensive first appointment and extensive testing to look for coinfections.
The more you can read in Burrascano prior to your appointment, the more you will be able to understand what the lyme specialist is saying to you and the approach he is taking to treatment of this complex disease.
An educated patient is essential with this disease. It will help you in so many ways. I know the Burrascano Guidelines are not an easy read because they were written to doctors, but it will give you your education on this disease. It is the education you do not want, I know. But, you will reap the benefits over and over if you understand a little of what is going on.
Welcome to LymeNet! We will help you all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Thank you for the reply, it was very informative. Could you please send me the info on that doctor? Looks like we have a drive ahead of us, but from what we've been seeing it is worth it.
I've already printed out those Guidlines for us to read. I have read through most of it already.
I am not opposed to traveling to MD either. What's 5 hours vs 4 hours? I would like all the resources I can in this matter.
Thank you both for the info.
Posts: 2 | From Suffolk, VA | Registered: Jul 2016
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Your wife needs 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. She needs 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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