LLMD stands for Lyme-Literate Medical Doctor. Any kind of licensed medical doctor can be called an LLMD. They don’t all belong to the same medical specialty.
Earning the unofficial LLMD designation comes with practicing medicine according to the diagnostic and treatment guidelines of the International Lyme and Associated Diseases Society (or ILADS).
There are also LLNDs, which is Lyme-Literate Naturopathic Doctors, for people with Lyme who chose to go that treatment route.
Why is it important to see an LLMD?
It’s natural to think that any medical doctor should be able to diagnose and treat Lyme disease. Or at least refer you to a doctor who can. But unfortunately Lyme diagnosis and treatment is a political hot potato, at least in the United States.
One group, the Infectious Diseases Society of America, believes Lyme can be treated with 2 weeks of antibiotics. If you have symptoms after that, you have something they call Post Lyme Syndrome, read as “it’s psychological; you still can’t have Lyme”
ILADS, on the other hand, recognizes the complexity of Lyme and the associated co-infections that also come with it.
Guess whose guidelines most regular doctors follow? Most hospital Emergency Rooms follow? And most medical insurance companies follow?
You can download and read both the ILADS and IDSA guidelines here.
Many doctors know little or nothing about Lyme. If you present with symptoms that they know, they’ll test, diagnose, and treat for that. If your tests come back negative, they’re clueless what to do next (but that usually doesn’t stop them from giving you some other medication to try). You could be in for a long, expensive, frustrating journey of misdiagnoses and mistreatments. It’s a sad story that’s happened to thousands of people with Lyme.
If you think you might have Lyme, whether or not you remember a tick bite, and you want your symptoms taken seriously, you should see an LLMD.
How to find an LLMD
It would be great if there were public lists of LLMDs … but there aren’t unfortunately. Most LLMDs try to keep a low profile because some of them have been reported to their respective state medical license boards for the “unorthodox” long-term use of antibiotics to treat Lyme. Some have been heavily fined. A few have lost their licenses to practice medicine and have had to move to other states.
So you won’t find any public online Lyme forums where you can ask for or talk about Lyme doctors by name. Instead you have to ask for LLMD names for where you live and forum members will private message you with the information.
We provide that service here too.
If you’d like to find an LLMD near you, just leave a request as a comment below and we’ll send you information on how to find one.
Please take your symptoms seriously if you think you have Lyme. Treated early, you can get rid of it. But once it becomes chronic (or persistent, as they call it), it can cause you months, if not years, of trouble.
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20. February 2012 at 3:17 pm
Hi, for the past 6 years I’ve had a bad headache, now i have them everyday (for 4yrs)I’ve been diagnosed with fibro, acid reflex, IBS, memory loss speech loss, bipolar, you name it. Every time they put me on a new medicine, i get sicker, i can’t take plus it doesn’t work. I do not know if this is lyme or not. But i’m tried i get a new symptom all the time. About 3 months ago my ears started ringing and won’t stop, plus 3 weeks ago my stomache started hurting and burning. I have a wonderful doctor; he hasn’t yet checked for lyme. I see a neuro, head doc,g astro too. I live in West Virginia and I know I have pulled ticks off me before even when I lived in GA. I would like to find a LLMD.
Thanks
Sherrie
20. February 2012 at 6:45 pm
Sherrie, I’m sending you WV Lyme info ASAP. If you have Lyme, the doctors you’ve been seeing don’t seem to know much, if anything, about how to test for it. Which means they probably don’t know how to treat it adequately either. Please find a Lyme specialist to get another opinion, even if you have to travel further than you’d like. Thanks for asking.
20. February 2012 at 5:34 am
pleas send me info on how or where to find a LLDR. I live near to Springfield MO.
20. February 2012 at 8:13 am
MO Lyme info coming up, RT. Thanks for asking.
19. February 2012 at 6:12 pm
I would love to have info on a LLMD in New Mexico or Colorado! Like the rest of you have I have been diagnosed with everything under the sun and nothing is getting better!
20. February 2012 at 8:07 am
Caitlin, I’m sending NM and CO Lyme info shortly. Thanks for asking.
19. February 2012 at 6:04 pm
Please send me a list of LLMD near Buffalo NY. If there is better treatment somewhat farther away, such as elsewhere in New York State or in Pennsylvania, please send that also.
Severely debilitating muscle pain and other symptoms for five years, but never experienced the lyme rash or marks. Would like to see if an LLMD could help.
Thank you. And thank you for putting up this website, it is a great help.
20. February 2012 at 8:03 am
NY Lyme info is on its way, Michelle. Thanks for asking.
16. February 2012 at 10:42 pm
Would love to have the name of a LLMD in Houston or Texas.
17. February 2012 at 2:46 pm
TX Lyme info it on its way, Lorri. Thanks for asking.
16. February 2012 at 4:11 pm
Hello Pam,
Thanks for your blog. I have had many symtoms as all the other folks and just always feels like I have the flu with lots of aches and pains in my joints and mucles. I have been bitten by a tick last fall but my problems all over with depression and anxiety and mucle fatique many many years and have been to numerous doctors that say I have osteo arthris, rhemeutoid arthris etc….. I live in the southern Maine area and would like some help on seeing a specialist or LLMD.
Thanks in advance for your info.
16. February 2012 at 5:45 pm
ME Lyme info is coming your way, Connie. Yes, do find someone who really knows how to diagnose and treat Lyme. Thanks for asking.
15. February 2012 at 4:24 pm
I used to be a very healthy person until about 6 years ago. I got what I thought was the flu, but was more sick than ever before, with high fevers, chills, aches, on and on. I have never completely recovered. My primary care doctor has sent me to different specialists as different symptoms appeared, who have diagnosed me with many different things, lots of medications for each one, but still little to no relief. I have GERD, gastroparesis, ibs, esophagitis, severe headaches, dizziness, passing out, Sjogren’s, now heart problems (diastolic dysfunction, frequent tachycardia, PVCs, PACs, one ecg showing prolonged qt, and many more), severe cataracts at 54, continuing problems with my eyes including vitreous detachment of both, early macular degeneration, retinal wrinkles, floaters, distortions, blurriness, continuing to have to upgrade my eyeglasses, sleep apnea, osteoarthritis degenerating my shoulders, cervical and lumbar spine, neurological problems of poor focus, problems concentrating, terrifying memory loss (I have a fear of early dementia). The neurological problems have all been exacerbated by a head injury last May from a car accident when I passed out at the wheel – I have no recollection of it. That accident also gave me a separated shoulder and some herniated discs in my neck, but I’m lucky it wasn’t worse. My employer terminated me while I was out on medical leave from the accident, so I now have no income, and no medical insurance. My house is in foreclosure, I’m in the middle of a divorce, and on and on it goes. Most people don’t get how sick I feel all the time, because ‘you look ok’. I’m exhausted constantly and take provigil every day to help with that. Then take ambien at night to try to sleep. I have anxiety now, depression, and frustration. It would be easier if I was told I had cancer, as people seem to be able to understand that you feel horrible if you have cancer, but not this. After all these years, and nothing concrete for people to understand, you feel like it must just be all in your head. “You’re normal, everyone is tired, most people don’t sleep well, everyone gets aches and pains” etc etc. Sorry this got so long, but I’m just so tired of it all, and guess I needed to vent for a minute. I’d love to find an LLMD in the Sarasota/Venice, FL area. Thanks for this website, and all the info you give. I’m hoping I can somehow get the tests taken using the TAP program. Thank you
15. February 2012 at 9:46 pm
Jan, you need to get an opinion from a doctor who really knows how to diagnose and treat Lyme if you have it. I’m sending FL Lyme info. Hang in! And thanks for asking.
15. February 2012 at 11:03 am
Hi,
I have a friend very ill with pain, anxiety, and depression over the last 3 years. He has been to more doctors than he can remember. He had a tick bite three years ago. We think it would be a good idea for him to see a Lyme’s doctor. He is in Portland, Oregon. We would greatly appreciate any names you could provide.
Blessings,
Carole
15. February 2012 at 11:22 am
OR Lyme info coming up, Carole. Thanks for asking.
14. February 2012 at 2:39 pm
Hi there Pam,
Thanks so much for being willing to help. I would love a referral for a good LLMD in San Francisco (or in the Bay Area in general).
14. February 2012 at 2:55 pm
Bay Area Lyme info coming up, Sally. Thanks for asking.
13. February 2012 at 10:08 pm
I live in Ocala, FL Is there a LLMD in this area? I have been struggling with ongoing and continuing illnesses for years. No MD has been able to come up with any diagnosis. Please send info ASAP.
Thanks. Carl
14. February 2012 at 9:33 am
Carl, FL Lyme info is being sent as requested, ASAP. Thanks for asking.
13. February 2012 at 1:54 pm
I live in Cedar Rapids, Iowa, are there any Lyme Disease Doctors near me? I’ve struggled for years with exhaustion and been treated for so many things that haven’t helped. I am at my breaking point and believe this may be my problem. I am so physically depleated that I’m scared I may have to quit my job which I can’t afford to do. I do home daycare so I’m self employed, so no short term disability to help at all. Please help me!
13. February 2012 at 3:15 pm
I’m sending IA Lyme info ASAP, Heather. Hang in. If you have Lyme, it is treatable, even if you’ve had it for along time. Thanks for asking.
13. February 2012 at 9:41 am
Hi I live in Kings Park N.Y DO YOU HAVE A LIST OF LLMD DOCTORS IN MY AREA
13. February 2012 at 1:04 pm
NY Lyme info is on the way, John. Thanks for asking.
12. February 2012 at 10:59 pm
I grew up in CT and had many tick bites as a child and young adult. Am now in my early 40′s (feel like I’m in my 80′s some days!) and Dr is saying RA although I am suspect because I don’t think my symptoms fit the criteria for RA. After reading all the Lyme disease info I think Lyme disease is what I have – every symptom I have is on the list. Just had blood test for Lyme the other day and am waiting on results. Could you please send a list of LLMD’s in the Seattle , WA area or as close to here as you can find? Thank you!
Jayce
13. February 2012 at 7:36 am
WA Lyme info is on the way, Jayce. Don’t be surprised if your Lyme test comes back negative. If it was the CDC test, the usual one used by most regular doctors, it reports a lot of false negatives. Thanks for asking.
12. February 2012 at 4:46 pm
Would love to have information on LLMDs and LLNDs in the Dallas/Fort Worth area. Have had “CFS” for 18 years and suspect lyme and probably mycoplasma as well. Is treatment ever effective in chronic cases this late in the game?? Thank you so much for getting this information out there:)
12. February 2012 at 8:47 pm
Linda, I probably had Lyme for over 40 years before I was finally diagnosed. Yes, treatment is effective even “late in the game.” ! I’m sending you TX Lyme info. Thanks for asking.
12. February 2012 at 1:59 pm
Thank you for your service with this website. Could you please send me info about Lyme doctors in the Atlanta area?
Best regards,
MJ
12. February 2012 at 8:38 pm
GA Lyme inf coming up, MJ. Thanks for asking.
11. February 2012 at 12:58 pm
I live in Utah. Please send me a list of doctors trained in diagnosing and treating lyme disease. Bill
11. February 2012 at 1:55 pm
UT Lyme info is on its way, Bill. Thanks for asking.
P.S. Comments on this site are moderated, meaning they don’t show up until they’ve been approved.
11. February 2012 at 2:23 am
My dear friend is ill with symptoms that sound much like Lyme Disease although her doctor did a spinal tap and it came up negative. They are thinking she has ALS. I have read that spinal taps are not always effective in diagnosing LD. She lives in Wilmington, Delaware along the woods and deer frequently visit in her yard. I just can’t accept she has ALS. Dr’s aren’t even sure that is what it is but that is what they are calling it at this point. Any thoughts or suggestions?
11. February 2012 at 1:52 pm
Sandee, your friend should see a Lyme specialist to see if that’s what she has. Lyme mimics over 350 diseases, including ALS. You’re right. Spinal taps are a poor (expensive, dangerous) way to test for Lyme. I’m sending you DE Lyme info you can give to your friend so she can find a Lyme doctor. Thanks for asking, and for being such a caring friend.
10. February 2012 at 12:22 pm
Hi I am looking for an infectious disease doctor specializing in lyme disease/bartonellosis. I live near Fredericksburg, VA and have been sick for more than 2 years being shuffled from doctor to doctor. THanks
11. February 2012 at 1:33 pm
Lori, in infectious disease doctor may be a poor choice for the proper treatment of Lymeand co-infections. Makes no logical sense at first blush. But many ID doctors follow the Lyme guidelines of the Infectious Diseases Society of America (IDSA), whether or not they are members. The IDSA says Lyme can be treated with 2-4 weeks of Lyme. They do not believe there’s chronic Lyme.
I’m sending you VA Lyme info so you can find a doctor who knows how to diagnose lyme correctly and treat it adequately if you have it. Thanks for asking.
10. February 2012 at 12:37 am
Hi, I’m from California and just got diagnosed with Lyme through a positive Igenex test. I am looking for an LLMD in Northern California. Could you send me information about doctors or groups in CA? Thanks so much!
10. February 2012 at 8:13 am
Ca Lyme info is on its way, Bethany. Thanks for asking.
9. February 2012 at 2:14 pm
Hi. My niece and grandniece live near Wilmington, N. C. they have been diagonised with lyme disease, but do not seem to be getting a lot of help from the Dr. they are seeing. Is there a LLMD in that area, that I could pass along to my sister-in-law? I know she worries about them. Thank you. Pat
9. February 2012 at 4:03 pm
I’m sending NC Lyme info, Pat. Thanks for asking, and for being such a thoughtful aunt/great aunt.
7. February 2012 at 6:00 pm
I have spent the last years trying to figure out my varied symptoms and think it’s worth talking to a LLMD and LLND. Any names of these practitioners would be really helpful. I live outside of Washington, DC on Maryland side.
Also, my 15 yr old son has been diagnosed with high-functioning autism. I’m feeling that he has whatever I have. Has anyone had experience with misdiagnosis of children?
Thank you!
8. February 2012 at 12:57 pm
Many parents do have children with Lyme who’ve initially been misdiagnosed, Ketaki. I’m sending you Maryland Lyme info so you can find a Lyme specialist for you and maybe your son. Thanks for asking.
7. February 2012 at 5:17 pm
I am a caregiver consultant and I have a client who was diagnosed with Lyme several months ago. We’re looking for a LLMD in our area, Denver, CO and specifically want to know if there are any LLMDs at Denver Health. Any help you can provide will be appreciated. Peace & Blessings
8. February 2012 at 11:57 am
I’m sending you CO Lyme info, Nadine. You should be able to find your client an LLMD. Unfortunately there’s not an abundance of them anywhere. Complex disease. Sticky politics around definitions, diagnosis, and treatment. Thanks for asking.
7. February 2012 at 1:40 pm
Please help me find a LLMD in Wisconsin? I suspect that I was infected last summer. Symptoms showed up later in the fall. No rash. Getting worse now. Thanks for your help.
7. February 2012 at 4:00 pm
WI Lyme info is being sent soon. Thanks for asking, Diane.
7. February 2012 at 2:14 am
Please help me. My 15 year old daughter contracted Lymes in October 2011. We were fortunate to confirm it just 2 weeks after bite. I feel we are playing beat the clock. We need to strengthen her immune system. She is already extremely fatigued and her sharp mind has dulled. Very frightening. Please help.
7. February 2012 at 11:32 am
Linda, is your daughter being treated for Lyme? If not, you need to find a Lyme specialist for her ASAP. If you tell me where you live, I’ll send info on how to do that. Thanks for asking.
6. February 2012 at 4:52 pm
My wife was diagnosed with Lyme a year ago and seems to have lingering symptoms. We live in the Washington, DC area and are interested in contacting a LLMD in our area, College park, MD.
My mother has an array of symptoms which could be attributed to Lyme and no other diagnosis has been made yet. her doctors don’t think that there is any reason to test for Lyme as it is not the season for that disease.
Could you please also send a list of LLMD in the Cincinnati, OH area?
Thanks,
Jeff
7. February 2012 at 11:05 am
MD and OH Lyme info is being sent shortly, Jeff. Thanks for asking.