Just because a doctor belongs to ILADS does not make him/her "Lyme-literate". They only refer doctors to people, but don't know anything about them. You need to get names from personal references and by checking the FL Lyme Support Groups.
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":
Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". They are an excellent source of information.
Read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Hi, Kansascity. Welcome to LymeNet.
I hate to contradict my buddy jory, but he and a lot of others do not know how the ILADS doctor referral system works.
It's no good!
See what I wrote to another person who had the same idea:
Requesting a list from ILADS is a bad idea. Did someone here tell you to do that? They just send out the name of any doc who has registered with them saying they treat lyme. So, the doc may have never treated a lyme patient in his life. Doctors take advantage of the ILADS referral service to get themselves some patients!
See Support Groups on the left side of the page. Contact the ones near you. Contact as many as you can to find out who is getting people well.
If you don't take this advice, you will regret it.
I have been helping people find good lyme doctors for 13 years. I know what ILADS does. They do NOT know these doctors.
So, they will send you the names that are closest to your location. Your choice.
Once you go south of Washington, D.C. there are few to no good lyme doctors. So, I suggest to all of these folks that they come to D.C. and see the #2 lyme doctor in the east.
For 2 1/2 years she was not accepting new patients, but now she has opened her practice to new people again. This would be a wonderful opportunity for you to see someone who has the best chance of getting you back to health.
You only have to appear in person once every 6 months, so that isn't much travel at all. The other months, you will do telephone appointments with the doctor.
Let me know if you want more info including prices and a description of how she treats. jory is a happy patient of hers.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Good to know, TF and hopingandpraying. This was my first attempt at helping out in this section and it's humbling to say the least - I'm new at this and if you'd like to share resources so I can be of better help please send a pm.
Kansascity, you're in good hands in this thread!
Posts: 289 | From Montreal, Canada | Registered: Mar 2017
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
QUOTE- "Sorry to say but there is no longer anyone good in the state of Florida. The one good doctor retired a few years ago."
Sorry! That is absolutely false.
Go to www.FloridaLyme.org and look on the menu to your left and you'll see "DOCTOR REFERRALS". Click there.
It will give you a choice of a number of health care professionals along with their contact information.
You can find them for every state (that has them) and some other countries too. It also gives you many suggestions on what to do if there are none or only a few.
posted
Hi Tincup! It would be great if you could share some recommended doctors in Fla or Tn, I want to start compiling lists of docs by state so sending out information is easy. I saw your site link to lymedoc, are all docs listed there at the same level? Which are morgellons-literate? Any help is appreciated!
Posts: 289 | From Montreal, Canada | Registered: Mar 2017
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
You have to look at the LymeDoc site and click on the state's name to get a list for that state. There are names, specialty fields, phone numbers, locations and a web link under each providers name for more info.
This is an up-to-date list, saving people who don't feel well lots of time and effort. Unfortunately, I continue to see lists that haven't been updated in years- even decades, but this list has been checked carefully and within the past year. I get regular updates from some of the docs as time passes and make changes as necessary.
Morgellons is on the menu there in its own category on the menu. It goes to the Morgellons website where they can recommend doctors as they are more familiar. They have a scientific conference each year and typically get additional names for their list that I don't have access to.
There are also a few listings in various states saying those docs treat Morgellons, but the best way to find one is thru the Morgellons site.
And no, of course not- all docs are not at the same level, just as none of us are. Some need short term care and others more extensive care. Some need an appointment immediately, some must wait on a list to get an appointment.
At the site we give choices and as many as possible at one time with no waiting and no personal opinions that can either be fairly accurate or far from accurate. The names are in alphabetical order as to show no preferences.
People need to check to see what docs & other professionals are in their area and might suit their own needs. If none, they can check it out and arrange an appointment in another near-by state just by clicking another link.
As I'd mentioned before, some take insurance, some have lower costs than others and since all that changes on a regular basis, the patients need to call the offices to see the current info.
Some there are supportive professionals (Lyme literate chiropractors, herbal docs, mental health, dentists, etc.) because that is what is needed at any given time.
You are certainly welcome to share the LINK to that site, but you must go around Robin Hood's barn to do it because LN doesn't allow it to be displayed here.
Hope that helps. Thanks for wanting to assist here.
posted
Good stuff. I don't know why I didn't see that when I looked. I'll post on this topic in the other thread.
Posts: 289 | From Montreal, Canada | Registered: Mar 2017
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