You could drive yourself nuts trying to read everything out there about Lyme. We cut through the noise to provide you with the best, up-to-date info.
A good place to start:
1. The International Lyme and Associated Diseases Society
ILADS Brochures – to read online or download.
Treatment Guidelines – by ILADS, Joseph Burrascano, M.D., (one of the first doctors to treat Lyme), and the Infectious Diseases Society of America (IDSA).
2. Lyme Tests
No Lyme test is 100% accurate, but some are more reliable than others. The standard CDC ELISA test that many doctors use is notoriously inaccurate. For more on this, read the ILADS’ Position Paper on the CDC’s Statement Regarding Lyme Diagnosis.
For reportedly more reliable tests, check out these companies. Also make sure to test for Bartonella, Babesia, and Ehrlichia, the three most common co-infections that often come with Lyme.
Perhaps the most widely used test by Lyme-literate physicians is the IGeneX IgM/IgG Western Blot:
IGeneX, Inc.
797 San Antonio Rd.
Palo Alto, CA 94303
Tel. (800) 832-3200
http://www.igenex.com/
NOTE: If you live in New York State, you’ll need to take special tests. Ask about which they are.
Medical Diagnostic Laboratories also offers a Lyme IgM/IgG Western Blot.
MDL Medical Diagnostic Laboratories
East Gate Business Center
133 Gaither Drive, Suite C
MT. Laurel, NJ
Tel (877) 269-0090
http://www.mdlab.com/
3. Lyme-Literate Doctors/Support Groups
Your best bet for finding a doctor who knows how to properly diagnose and treat Lyme is to join a free state Lyme support group. Because doctors fear losing their medical licenses if medical licensing boards find out they’re treating too many patients for Lyme, they prefer not to have their names on public lists. So it’s the convention on most online support groups to use a doctor’s last name initial. However, group members will email you full names if you post a generic request in forums or on message boards.
Yahoo! Groups State Lyme Support Groups
Copy and paste the following URL into your browser (with state name added) – http://health.groups.yahoo.com/group/fullstatenamelyme/ – NOTE: Enter the full name of your state followed by lyme, no spaces. You’ll need to login to your Yahoo! account to join a group or register if you don’t have a Yahoo! account. The California Lyme Disease Association runs all these Yahoo! Lyme groups.
MD Junction Lyme Disease Support Group
The MD Junction Lyme group has many members who are very knowledgeable about Lyme. Their experienced moderators are always helpful and caring.
http://www.mdjunction.com/forums/lyme-disease-support-forums
4. Info on IV Infusion – PICC Lines
Some LLMDs have their patients with chronic Lyme do IV antibiotic treatments at home. It can get complicated (and expensive) finding the supplies and home nursing help to do infusions right.
Linda Slocum, a fellow Lymie, has written a free 58-page e-book on Infusing for Lymies. You can download it from our PICC line page.
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1. January 2012 at 9:27 pm
thanks pam for the resourceful website and support.
i’m looking for llmd/nd in the brattleboro, vermont or fall river, massachusetts area when you a get a chance.
wishing you a happy, healthy new year.
2. January 2012 at 11:14 am
VT Lyme info is being sent ASAP, MJ. Thanks for asking. Health you in the New Year too!
28. December 2011 at 7:24 pm
Hi, just wondering if you can give me some info on lyme specialists near Naugatuck, CT. Much appreciated, thanks.
28. December 2011 at 8:59 pm
CT Lyme info coming up, Ben. Thanks for asking.
26. December 2011 at 8:06 pm
Lookoig for llmd in clarksville,TN. Have late Lyme for four years just tested positive along with rocky mountain fever.help please.
26. December 2011 at 8:32 pm
Glad you’ve got diagnoses, Tara. TN Lyme info is on its way. Thanks for asking.
25. November 2011 at 7:34 pm
Eye doc told me I have a cotton wool spot in my eye today. He said one of the possible causes was lyme diseases. I have a few other symptoms, but wonder if I’m being an internet hypochondriac… Know of any specialists in the Seattle area?
27. November 2011 at 12:40 pm
WA Lyme info coming up, Jessica. Thanks for asking.
23. November 2011 at 2:37 pm
do you have name(s) of physicians in New Jersey who specialize in diagnosig and treating Lyme disease?
thanks
23. November 2011 at 10:30 pm
Kathy, I’m sending NJ Lyme info ASAP. Thanks for asking.
20. November 2011 at 7:31 pm
My father has all the signs of Lyme but tests are normal. He is in upstate NY and is being stonewalled by many doctors. We are seeing [doctor's name removed] in [city removed]. Is he a good lyme specialist? Are there other things that can help with lung function/breathing when chronic lyme has affected his nervous system? Thank you!
21. November 2011 at 3:04 pm
Amy, the doctor you named is a respected Lyme specialist. Sorry I can’t publish the doctor’s name; it’s an online convention to protect Lyme doctors from being harassed by medical boards for the “unorthodox” treatment of Lyme. You need to ask your doctor about lung issues. Often breathing problems are due to the Lyme co-infection Babesia. Thanks for asking. Good luck!
17. November 2011 at 4:46 am
My dear friend has been told she has Lyme Disease. She would like a second doctor opinion. Also she needs a doctor closer to her home. She lives in Lake Wales, Florida. Thank You for your
help.
Terry
17. November 2011 at 11:30 am
Terry, I’m sending you FL Lyme info. Unfortunately if your friend does have Lyme Disease, she’ll have to travel to Tampa or Orlando for the nearest Lyme specialist. Thanks for asking, and for being a caring friend.
10. November 2011 at 1:41 pm
Hi,
I’m looking for a Lyme literate Doc in the Los Angeles area.
Thanks in advance.
10. November 2011 at 1:42 pm
LA info coming up, Linda. Thanks for asking.
10. November 2011 at 8:23 am
Hi Pam.
Would you be so kind as to send me info on Michigan Lyme Info. We have a family member who is dealing with a lot of neurological problems right now. He was treated for Lyme disease about 20 years ago and now I’m wondering if maybe he is having a recurrence. Doctors so far have not been able to help.
thanks.
10. November 2011 at 11:08 am
Derek, Lyme can recur. I’m sending you MI Lyme info so your family member can find a Lyme specialist and get tested.Also he/she may not have been tested 20 years ago for the common co-infections that come with Lyme. Thanks for asking and for doing important leg work for your family member.
14. December 2011 at 9:55 pm
I am also in MI and am looking for a good lyme dr. Can you also send me some MI Lyme info.
Thanks!
15. December 2011 at 12:22 pm
MI Lyme info is being sent ASAP, Mari. Thank you for asking.
9. November 2011 at 1:35 pm
My son has had treatment for Lyme disease but has chronic lyme. He still can’t sleep and has muscle pain and fatigue. He has had to go back on oral antibiotics several times but doesn’t seem to get well to where he can function normally Is there a doctor in FL that can continue treatment with therapy and see if he needs more treatment. Didn’t know if we need to take him to NY to see a Dr that can get him to where he can sleep and get relief from the symptoms that don’t seem to ever go away.
9. November 2011 at 1:44 pm
Donna: I’m sending you FL Lyme info. Sometimes you do need to change Lyme doctors if treatment is not working. They all have different philosophies and treatment protocols. Thanks for asking.
4. November 2011 at 10:36 pm
My daughter (adult – 35 yrs.) is very ill. She’s extremely fatigued – sleeps 14-18 hrs., no appetite, slurred speech, difficulty concentrateing, she’s afraid to drive (if she could even stay awake long enough to go any where). She has many other symptoms that correspond to Lyme Disease (and other things of course). They have tested her for everything under the sun includeing Lyme and it has all come back negative. My question is – could it still be Lyme if the test comes back neg.? Are there more tests that they can do? Is there a Dr. in Maine that is Lyme-literate?
Thank You
Ruth
5. November 2011 at 9:48 am
I’m sorry your daughter is so sick, Ruth. Most Lyme tests are unreliable, especially the CDC ELISA and Western Blot tests. Lyme-literate doctors will often treat on clinical symptoms alone because of this, although the tests from IGeneX and MDL are more conclusive. i’m sending you ME Lyme info so your daughter can find a doctor who knows Lyme and and can hopefully help her. Thanks for asking and for being such a caring mom.
31. October 2011 at 8:49 pm
My sister was recently diagnosed with Lyme disease. After reading the info on the website I want to be proactive with her treatment. Please refer a Lyme Specialist in the metro Atlanta area. Also she is having severe muscle and joint pain, what is the recommended treatment for the pain?
Kenya
1. November 2011 at 11:30 am
Kenya, I’m sending you GA Lyme info. Your sister may have to travel to find adequate Lyme care. Thanks for asking and for being such a caring sister.
16. November 2011 at 5:43 pm
Pam, my daughter lives close to Brunswick, GA and it is pretty clear that she has Lyme and the co-infections but we do not know who to see locally. Could you send me the name of the two doctors in GA or any in Jacksonville, FL or the surrounding area? Thank you, Kathleen
17. November 2011 at 11:10 am
Kathleen, I’m sending you GA and FL Lyme info shortly. Thanks for asking and for being such a supportive mom.