Quotes- Recommendations Posted Online
July 2016- These quotes were taken from a public internet site where patients help new patients find a Lyme treating doctor. What is sent to new patients privately by other patients is much worse in many cases. This is one reason this site ( www.LymeDoc.org ) was created- to stop this inaccurate information from being passed around to new patients.
These comments (all but one near the end- marked as such) were posted publicly by just one person and just in the past few weeks. This has been going on for years. This can't possibly be good for Lyme treating doctors, would certainly be bad for their reputations and puts a serious dent in their business practices. I've highlighted some of the more concerning comments in purple font.
Patient requested a doctor in Florida- The response is below.
My recommendation would be that you come north to the D.C. area. ONce you go south of D.C., there are few to no good lyme doctors. The doc I recommend will do 2 months of telephone appointments before you need to come again in person, so you would only be flying here once every 3 months.
Virginia Lyme doctor needed- The response is below.
Sorry, in all the years I have been helping lyme patients here on LymeNet, nobody has told me of a good lyme doctor in that area [Virginia], including Richmond area.
I am afraid you are going to have to travel to the D.C. area to get good care. And, the good lyme specialists do NOT take insurance. So, it is expensive to be seen by a good lyme doctor--like $600 for the first appointment, plus a few hundred more for tests.
One person told me of a doc in the Richmond area who was treating their daughter's case of lyme with just "cleansers." So, that seems to show you that there isn't really any true lyme treatment going on in that area.
There are many parts of the country where no lyme doctors exist. So, at least half of all lyme patients go out of state for their care. Many have to fly.
If you want the name of a very good lyme doctor who is right outside of D.C., let me know. You would not have to travel there often. He will do telephone appointments for 2 months after each in-person appointment.
I am sorry to have to tell you this bad news. This is the way it has always been. Hope there is some way you can make a trip to the D.C. area. This doc can see you quickly.
Your insurance will reimburse you for part of the cost of the doctor visit and blood tests. And, it will pay for the prescriptions and routine blood tests that the doctor will do monthly. So, the big expense comes at the first appointment, and you can put that cost on a credit card and pay it off slowly.
If you have lyme disease, you cannot afford to just let this go as the disease will just continue to progress.
Request from person in Tennessee- The response is below.
That is a bad area for lyme patients. And, if she needs a doc who can handle advanced cases, she definitely will have to travel a good distance--like to Maryland or D.C.
Request from someone in Florida- The response is below.
In my opinion, Florida no longer has any good lyme doctors. There is another S Florida lyme doc that I strongly recommend you stay away from completely.
I recommend that folks in Florida travel to the D.C. area to get good lyme treatment. If you are willing to do so, let me know.
The doc I recommend can see you quickly. He will do telephone or Skype appointments monthly so you only have to travel to the D.C. area once every 3 months.
With lyme disease, the doc is the key to getting well. Can't emphasize that enough. Many doctors treat lyme but very few have ever cured anyone.
Request from patient in New Jersey- The response is below.
Unfortunately, many doctors treat lyme disease, but there are very few really good lyme doctors who treat properly and know enough to cure a person.
I do NOT recommend the NJ lyme doctors or the Philly or NYC ones. Connecticut has one good lyme doc that I know of.
I am in Maryland and I recommend a doctor right outside of D.C. You would only have to go to him in person once every 3 months. The other months, he will have phone or Skype appointments with the patient.
I know that right now all you want is a diagnosis. But, the way it goes is, you need a really good lyme specialist to get a good diagnosis. The first appointment is the extremely expensive one. Say, about $600 for a one hour appointment.
So, when you get to the point that you are willing to pay the big bucks to see a doctor who specializes in lyme, to once and for all find out if this could be lyme, then perhaps you would be willing to travel to see someone good.
At least half of all lyme patients go out of state for their care. Many have to fly to their doctor's office.
If you want the name of the doc in Maryland that I recommend (near D.C.) let me know and I will send it.
Request from patient in MA- The response is below.
There are very few lyme doctors and even fewer pediatric lyme doctors--very few of those. So, be prepared to travel beyond Mass and NH if necessary to get to someone good.
Request from PA patient- The response is below.
I sent you what I have. You could get better care if you traveled to the D.C. area.
Request from Texas patient- The response is below.
Texas is not a good place if you have lyme. Be willing to travel out of state to see a good doctor and get treated properly.
I am sending you the patient reports I have on Dr. W. in Texas.
If you want the name of a good lyme doc in Maryland who can see you quickly, let me know. A number of folks from Texas are seeing him.
He will do Skype or telephone appointments after the first in person appointment, so you will only have to travel to Maryland once every 3 months.
Because of the sorry state of affairs in Texas, many folks from Texas are coming to the East Coast for testing and treatment for Lyme disease and it's co-infections.
If you don't go to a really good doctor, you will treat for years and will NEVER get well. You can treat for the rest of your life.
I will send you the Maryland doctor's name now.
Request from Virginia patient- The response is below.
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.
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.
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.
Request from SW USA- The response is below.
Since you are willing to fly anywhere to get good care for your daughter in Texas, I suggest you fly to Maryland. I do not provide a list of doctors. I just recommend ONE doctor--the best one available right now. If you want that name, let me know.
New Jersey Doc Needed ASAP- The response is below.
The doctor that I recommend is outside of Washington, D.C. Let me know if you want the name. I do NOT recommend the NJ lyme doctors or the Philly or NYC ones. I don't know enough about CT doctors, so I can't help you there. But, I know Maryland!
A NEW patient is trying to be helpful by recommending doctors to other new patients after seeing previous comments above...
I can send you a recommendation for a LLMD that is out of state. You would have to do an in person visit initially, talk on the phone or Skype for 2 monthly appointments, and see him in person again after that. So in person first time, phone/skype the following month, phone/skype the next month, in person the next month. Repeat.
Patient misquoting Dr. B- many, many examples- this is just one.
Here are a few points from Dr. B's guidelines:
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
[My note- From what I remember, Dr. B. does not say you must use IGeneX in his guidelines.]
And it continues... one person still promoting a couple of doctors by trashing the others.
"You are not in a good area for lyme doctors. Once you go south of D.C., there are VERY few lyme docs and no really good ones.”
"A lyme specialist is one whose practice is either 100% lyme disease or at least 50% lyme disease patients. That is the only way the doctor can develop expertise with this complex disease(s)."
"I doubt any western Pa. or Ohio doctor is as good as the doctors we have in the east. I hope you can come here to Maryland or the D.C. area…"
"Just know that the best lyme doctors are often not taking new patients or they have extremely long wait lists--like one year."
Here are a few points from Dr. B's guidelines: "You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif."
"There is nobody in New Jersey that I recommend. This is based on numerous lyme patients in NJ telling me that they have tried all that are there. How far are you willing to travel to get good care?"
"Unfortunately, there are no really good lyme specialists south of Washington, D.C. Are you willing to travel to the D.C. area to get good care? If you want an immediate appointment, I can give you a doctor who could see you right away.”