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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31. October 2011 at 7:29 pm
I have been traveling to CA then MO to be seen by Lyme specialists. I live in TX north of DFW and would appreciate information on a doctor closer to me. I have been diagnosed with three co-infections along with Lyme. Would also like to find a group to chat with for support purposes.
Thank you for your help in these areas.
Kay
1. November 2011 at 11:16 am
DFW info is on its way, Kay. You should be able to find both an LLMD and group support. Thanks for asking.
27. October 2011 at 10:38 pm
Could you please send me any info you may have on Oregon lyme doctors. I live on the south coast. Thanks for doing what you do.
28. October 2011 at 5:09 am
OR Lyme info is being sent shortly, Florence. Thanks for asking.
21. October 2011 at 5:10 pm
Hi, do you have any information on Lyme specialists in the San Francisco Bay area? Thanks!
21. October 2011 at 7:01 pm
SF Lyme info coming up, Amy. Thanks for asking.
19. October 2011 at 4:45 pm
Was bitten by a tick Aug 1 2011 ( found it attached to scalp). Didn’t give it much thought. Aug 29 I began to present with severe hip and knee pain, and horrendous muscle spasms. After a week of pain I went to an Urgent Care facility, was given pain killers, muscle relaxers and PT. A week later (when pain didn’t subside) I was placed on Prednisone. The following week I developed flu-like symptoms and extreme fatigue. After 7 days I went to my GP. Four tubes of blood and three days later my white count came back as extremely elevated and was placed on a 10 day regimen of Levaquin. Within three days I felt as though I was having an allergic reaction to the antibiotic. After several phone calls to my GP and a return visit, I was then placed on yet another course of Prednisone. Extreme fatigue and the need for sleep increased, as did a constellation of additional symptoms. Oct 13 I returned to the GP again for more blood work. Lyme came back negative (not surprising after all the meds I was on), white count was still elevated as were my lymphocytes. In addition I tested positive for mycoplasma pneumonia. He and I discussed antibiotics (he wanted to place me on Erythromycin, I insisted on doxycyline). I started yesterday. Am having extreme headaches and gastrointestinal issues at his point. Bottom line…I need a Lyme literate physician. I’m in CT but would go into NY if necessary.
19. October 2011 at 5:55 pm
Leslie, your GP sounds like an accommodating doctor. Your GP also sounds like he/she doesn’t know much about Lyme. Prednisone, or any steroid, makes Lyme worse. Also your allergic reaction may have been a Herxheimer reaction, normal with Lyme. Your GP should have recommended herbs and probiotics to support your liver, kidneys, and gut. And you don’t say if you were tested for the common Lyme co-infections Babesia, Bartonella, and Ehrlichia, but I’m guessing not.
CT Lyme info is on its way. Please find someone who knows how to test for and treat Lyme. Thanks for asking.
19. October 2011 at 8:14 am
I am constantly tired, starting right after I get up. I don’t get a clear head – drowsy and off balance. Went to many different doctors, but no ideas what it is. A few days ago a friend of mine told me about a possible lyme infection. How can I check if this is it?
It started 3 years ago with slight imbalance (no, it is not vertigo, was all checked out), and now it is terrible. I am not aware of any tick bites, but I was in Vietnam when the the first slight drowsiness occured, I was also in the countryside, and maybe I got a tick bite, who knows. How can I find out? I am desperate and will check out anything, there has to be an answer.
I live in Munich, Germany right now. Do you know a doctor familiar with this?
Thanks for giving me some ideas on what to do
Honey
19. October 2011 at 12:15 pm
I’m sending the info I have, Honey. You may have picked up another vector-borne illness besides Lyme when you were in Vietnam. Thanks for asking. Let us now what you find out.
16. October 2011 at 10:00 am
Hello I am looking for a good Lyme specialist in either Manhattan or Westchest county, ny.
Thank you,
16. October 2011 at 10:02 am
NYC Lyme info coming up, Derin. Thanks for asking.
15. October 2011 at 4:57 am
Any good Dr’s on Long Island in New York for Lyme testing?
15. October 2011 at 10:41 am
There are Long Island Lyme doctors, Frank. I’m sending you info on how to find one. Thanks for asking.
14. October 2011 at 11:13 am
Hello…. I have tested postive for Lyme and Anaplasma and have been treated by my primary care Dr. for 5 months with Doxy. My lab test keep getting higher. They cut the medicine down from 400 mg daily, 200 mg in the a.m. and 200 mg in the p.m. to 200 m.g daily 100 mg. in a.m. and 100 mg in p.m. I saw an infectious disease Dr. who said I should have never been on that high of a dose of doxy for that long a period of time. He told me to stop it immediately. It’s been a week since I stopped the medicine and can feel some symptoms come back right away, neck and back pain, swollen glands. He recommends 30 days of iv treatments with Ceftriaxone (Rocephin). I really would like to go straight to an LLMD but I cannot seem to find any information on how to find one in NJ. Any help would be appreciated.
Thank you
14. October 2011 at 1:08 pm
Sorry you’re not getting the results you expected, Kelly. You should know that many infectious disease specialists don’t believe in longterm antibiotics for Lyme. Many LLMDs, on the other hand, do prescribe 400 mg of Doxy a day, sometimes 600 mg, depending on your size. 30 days of Rocephin should help, but again, it may not be enough to get rid of the Lyme. I’m sending you NJ Lyme info. Find a Lyme specialist and get another opinion. Thanks for asking.
13. October 2011 at 8:56 pm
I have what maybe a tick bite or a black widow bite on my upper stomach. It started out as a quarter sized redness that was tender and after two days is is sore and the size of a baseball. I live in southern Maryland. Would you have any info on Maryland Lyme you could send me? Thank you,
14. October 2011 at 10:19 am
Maryland Lyme info coming up, Jim. Thanks for asking.
7. October 2011 at 8:58 am
My 17-yr-old son has come down ill again. Just like last year, the symptoms start at the end of September, right when college starts. I know he loves his classes, so he’s not willing himself to get sick, but perhaps the stress pushes his immune system over the top. He was treated for these same symptoms last year by his naturopath. He was diagnosed at that time with two “infections”: one, pneumonia; but the other they couldn’t nail down despite lots of tests (mono, Epstein Barr panel, etc). His symptoms are: extreme fatigue, loss of appetite, sick stomach when he tries to eat, headache that lasts for days, stiff neck, fever and chills…so many of these are indicative of Lyme. He also had a slightly enlarged spleen last year, which his naturopath was concerned about, and which his Kaiser PCP dismissed. I don’t believe my son was tested for Lyme last year, and before a test was done, his symptoms went away. The flare up last year lasted about 3 months, which caused him to have to drop out of college. (He grad’d from HS at 16.) So, I’m hoping to get him into his naturopath today or tomorrow and will ask that he be tested for Lyme and the 3 major coinfections. Nevertheless, I live in Vancouver, WA (NOT Vancouver, BC), just across the river from Portland, OR. I’m much, much nearer Portland, OR than Seattle, WA, so if you have Lyme-specialists in Southwest Washington or Portland, OR area, I’d love to have the list. I just discovered this blog, and you are warm, friendly, and helpful. Thanks so much for doing this.
7. October 2011 at 5:58 pm
Could be Lyme and Babesia, Deb. OR Lyme info is being sent ASAP. Your naturopath sounds helpful but may not have enough knowledge to treat Lyme and any coinfections. Glad you asked.
16. October 2011 at 4:22 pm
Deb K, I live in the same area and my daughter and I go to a lyme literate doctor that is an MD and ND. I can’t post the name, so I don’t know how I’d get it to you. He was the one who suggested we get tested. I hadn’t even thought about Lyme disease since it’s not noticed out here as much and I never came across it when searching for help for my daughter for 10 years.
My daughter tried the Running Start program at the college when she was 16, but couldn’t finish it due to fatigue, which was from Lyme disease that we didn’t know about until a year ago. So I think the stress does contribute to our kids not being able to do it, the commotion and a lot of people, lots of reading, etc. I wish your son the best in beating it.
16. October 2011 at 5:00 pm
Thanks so much, Sharon. You can send the doctor’s name to me at pam@lymediseaseblog.com and I’ll see that Deb K. gets it.
7. October 2011 at 8:55 am
Can you please help me find a LLMD in San Antonio TX. I have had Lyme for over three years. I have a doctor in Houston TX but I have moved to San Antonio to be with my daughter. I am tired worn out and need help. It has taken a toll on everyone and I need my life back. PLEASE HELP!!!!!
7. October 2011 at 5:42 pm
San Antonio Lyme info is on its way, Michele. Hope you can get your life back on track. Thanks for asking.
19. September 2011 at 9:21 pm
In May I was in North Carolina for a conference after visiting a friend and hiking in the woods, found a couple of ticks that had bitten me and removed them. I didn’t have the bullseye but the bite site from one of the ticks is still visible all these months later, making me think that I didn’t get it all when I removed it. About 3 weeks later while traveling in California I came down with what was diagnosed as a viral syndrome – fever, headache, body aches, sweats and chills, but no respiratory or digestive track symptoms. After being sick for a couple of days I became dehydrated and passed out a couple of times and ended up in the emergency room where I received 3 liters of fluid by IV and was discharged after several hours. It was about a week before I felt well enough to fly home to Tucson. I had been suffering from some neck and shoulder pain from arthritis (had an MRI that revealed stenosis in my cervical spine) and have been getting physical therapy for that. But now it seems like the neck pain is getting much worse and I’m having some trouble concentrating, a variety of other symptoms like fatigue and other aches and pains. So I’m wondering if I might have Lyme and what tests I should have done to find out. It seems much better to get tested and treated if I do have it or a related disease before it gets worse. I live in Tucson, Arizona and so if there are lyme savvy specialists around here, it would be great to know about them. Thanks.
20. September 2011 at 8:08 am
I’m sending you AZ Lyme info, David. I agree. You don’t want your condition to continue on longer if you indeed do have Lyme. Most people don’t know that Lyme usually comes with one or more co-infections (Babesia, Bartonella, and Ehrlichia), so you’ll want to be tested for those too. Thanks for asking.
8. September 2011 at 5:23 pm
Can you give me the name of a specialist around the Jacksonville/St Augustine, FL area? Thanks!
8. September 2011 at 8:43 pm
Nancy, FL Lyme info is being sent shortly. Thanks for asking.
8. October 2011 at 2:46 pm
I would also like the name of a specialist who could diagnose and treat in Jacksonville, FL. Thank you
10. October 2011 at 2:41 pm
I’m sending FL Lyme info, Charlotte. Thanks for asking.
4. September 2011 at 11:21 am
My daughter just moved to Northampton, Mass from northwest Ct. The 1st Dr. she saw said it could be Viral Meningitis, and then an ER Dr. said it could be Ehrlichiosis, and started her on Doxy right away. What specialists are there in western Mass?
4. September 2011 at 12:02 pm
MA info is being sent ASAP, Bill. Thanks for asking.
26. August 2011 at 7:48 am
I have symptoms of Lyme’s disease. My doctor is doing a blood test and I don’t have the results yet. After reading about other’s experiences, I feel I may need a doctor specializing in Lymes. Do you have the names of any in the St. Paul/Minneapolis metropolitan area? Thank you!
26. August 2011 at 1:17 pm
MN Lyme info is being sent ASAP, Joanne. Thanks for asking.
22. August 2011 at 9:42 pm
We live in Northern NJ in a very wooded area. Lots of ticks are around us. Our 18 year old son was diagnosed with ITP because he has a dangerously low platelet count.. his own immune system is killing his platelets now. Could lyme disease be a cause for his immune system to go haywire like this?
23. August 2011 at 11:46 am
Katherine, Lyme messes up the immune system big time. I’m sending you NJ Lyme info so you can find a Lyme-literate doctor. I think it’s worth getting another opinion. Thanks for asking.
24. August 2011 at 12:39 am
My 16 year old son has been complaining of memory loss, dizziness, seeing black spots with quick movements, not feeling like himself, feeling like in a dreamlike state,occasional “flutter in his veins or pulsing”, joint pain at times, fatigue after sports that never caused fatigue before,headaches at times,and diificulty remenbering and learning.This has been going on for the last 3 months, approx. He had a battery of tests that all came back neg. including the Western Blot test. Could you give me MD info for further testing for Lymes in the Northern NJ area. New York or Conn. are all convenient locations for us. He does remember having a reddened and then scabbed area behind his ear 3-6 mos. ago. thank you. Frances
24. August 2011 at 3:31 pm
NJ/NY/CT Lyme info coming up, Frances. You’ve got lots of good resources to choose from. Thanks for asking.
13. August 2011 at 9:05 am
I’ve had severe fatigue, swollen lymph nodes, glands, shortness of breath, sore throat, hoarseness, neck and lower back pain, headaches, dizzines, muscle aches. I had pale stools, now I have continous diarrhea. I have been to doctors and they ignore most of these symptoms because I had a massive heart attack 1 year ago. They keep testing my heart and everything comes back good. One doctor even noticed my liver is enlarged but ignored it due to almost normal liver functions in the blood tests. About 2 months ago, I found 19 wood ticks on me (eastern South Dakota) when I was working in the tall grass and trees. I live in Western South Dakota and need a doctor in this area that is knowledgeable about lymes. Could this be lyme disease?
13. August 2011 at 4:23 pm
You could have Lyme, Dave. Or another tick-borne illness. I’ve sent you SC info. Thanks for asking.
9. August 2011 at 7:26 pm
I am looking for a doctor in the Brunswick, GA area. Jacksonville, FL, or Savannah, GA would also work.
Thank you for your time.
9. August 2011 at 7:27 pm
I’ll send you GA & FL Lyme info, Bonnie. Thanks for asking.
1. August 2011 at 11:05 pm
Could you send me information on specialists in the Atlanta area? My doctor wants to send me to rheumatologist but I’m thinking I should consider a lyme disease specialist. Thanks for any info you can send.
2. August 2011 at 10:47 am
Good move, Jeanne. I’d check a Lyme specialist first. GA info is being sent. Thanks for asking.
1. August 2011 at 6:43 am
your blog is very interesting. My son has unexplained dizziness for the past 3 weeks and extreme fatigue but no joint pain. Dr doesn’t think it is Lyme; but I feel we should do further testing. Seems like there are many tests that are inaccurate. I live in Westchester county; could you recommend doctors there and places to get an accurate test? Thank you
1. August 2011 at 1:42 pm
NY info is on its way, Maureen. I agree. Better to check out what’s going on with someone who knows how to diagnose Lyme. Thanks for asking.
29. July 2011 at 7:26 am
Hi,
Would you please send me information on doctors in Wisconsin that have a lot of experience with Lyme disease.
Thanks,
David
29. July 2011 at 11:11 am
WI Lyme info is on its way, David. Thanks for asking.
28. July 2011 at 7:53 pm
Do you know any specialists in Atlanta or Georgia? After 10 years of searching for answers to my problems I finally got blood work done for a Lyme test and it came back positive, plus my CD57 count is very low. I’m having a hard time figuring out the next steps and a doctor who will take this seriously. I have 24 symptoms of Lyme’s Disease and am in a lot of physical and emotional pain.
Please let me know if you know of any specialists in Atlanta or Georgia. Thank you so much!!
29. July 2011 at 10:50 am
Now that you know you have Lyme, Libby, you next step should be to find a Lyme-literate doctor to treat you. GA info is on its way. Do your home work to find someone compatible, even if it means you have to travel to see him or her. There are no shortcuts in Lyme treatment. Thanks for asking.
28. July 2011 at 12:53 pm
My 85 year old mother has suffered (severely) from ehrlichiosis for four years. Diagnosis took about 2 years, and only now does she realize that all of the other ailments diagnosed (and treated) in the meantime were not causing her many symptoms.
Do you know of any specialists in the northern NJ area?
Many thanks.
28. July 2011 at 3:06 pm
I’m sending you NJ info ASAP, Gail. These mothers! They never listen. (Mine’s 90). Thanks for asking.
25. July 2011 at 10:36 pm
Do you know of any specialists in wilmington, nc? Thanks for any help you can provide. We are concerned about our 4 year old son.
26. July 2011 at 10:39 am
I’ll send you NC info, Heath. If you can’t find someone in your state, let me know and I can send you info for elsewhere. Thanks for asking.
24. July 2011 at 5:48 pm
Had bulls eye rash and flu like symptoms. Treated with Doxy for 2 1/2 weeks. Per doctor, Lyme titer test was neither negative nor positive. Referred to infectious disease specialist, but feeling that a lyme disease specialist may be more appropriate? Looking for names of lyme disease specialists in Iowa.
24. July 2011 at 6:07 pm
Iowa Lyme info is on its way, Sharnel. A second opinion is a good idea. Thanks for asking.