Columbia University school of Med has a Lyme department and are sometimes conduction clinical trials. Their website has some great info as well.
LD is nothing to mess around with. I had the neuro Lyme and still have resistant Lyme. It can definitely kill you. Dr. Singleton is very good, as is the Reumatologist, Dr. Leila Zackrison in Fairfax, VA. I went undiagnosed for 2 years and was on abx and various other meds for 3 years. Saved my life. And just as an FYI, one of the reasons that many Lyme specialists do not accept insurance is because the world of medicine (and the Center for Disease Control) still don’t get it. Dr. Burrascano is also an outstanding expert in the field. Because the average medical world still doesn’t accept the diaganoses and treatment for those with severe LD and/or chronic LD, in many cases insurance cannot be accepted since there is still so much flack from the medical/insurance world. But that is changing and even Social Security acknowledges that Lyme Disease/Resistant/Chronic LD, when documented, are now being approved for disability.
When a person is bitten by a deer/lone star tick that is infected w/LD, not everyone (maybe 50%), Do NOT get the typical “bulls eye rash.” And the rash does not necessarily appear in the location where bitten – although some infectious disease specialists will debate that. If you are bitten by a deer/lone star tick, note the date on paper or your computer, wait 4-5 weeks, take notice of any flu-like symptoms (or any unusual symptoms) and then request a Lyme Test - usually the Western Blot (if a blood test is done sooner, this could result in a false positive or false negative due to the cycle). While the WB (and most other blood tests) are not 100%, if you wait 4-5 weeks until after you are bitten, the results will probably be more accurate due to the life cycle of the Lyme spirachetes. Very involved. AND, the symptoms vary from person to person. So it’s not always the swollen, painful joints or a flu-like feeling. Mine started out with a pain in my right hip, and multiple UTI infections which I never had in my life and would never have connected. And the idea that the lyme carrying tick must be embedded in your skin for 24-48 hours in order to transmit the disease is not accurate. Those of us who have suffered from very serious LD know. Again, it’s an ever-growing disease that can be absolutely devastating. If one gets the bull’s eye rash (can be anywhere on body - not necessarily at the place of the tick bite), you are lucky, and probably 2-3 rounds of Doxycycline will do the trick because you’ve caught it in time. However, many do not get (or see) any type of rash and may go for years being misdiagnosed or undiagnosed… Hope this helps.
Ok so like another poster I am wondering if I have Lyme, RA or something else. I have achy achy joints - all of them from the neck down… I am tired all the time, but I always push through, because I have to.
I get headaches but didn’t think anything of them. I have been having some residual nerve pain, but I can’t tell if it’s from my back surgery from last year or something else.
I have an appt to go and get a blood test in September( that’s the earliest they had an appt.)
I have never had a rash, but I am outside constantly with my dog and working around the yard, so who knows whether I got bit or not.
I have complained of these symptoms with my dr for awhile now and he’s kind of blown me off. But I think I am going to insist on a Lyme test when I see him.
Dr. Singleton is simply amazing. He gave me and my daughter our life back (with a little help along the way from Dr. Jemsek).
I had lyme. I was on antibiotics for a year including IV tetracycline for 6 weeks. I also had babesia. Yuuck.
That was four years ago. Fine now accept for sinus issues related to allergies.
Had sinus surgery today. I will feel better in a while.
I had to put a horse down because of Lyme. Best we could figure it went to his brain. NOT GOOD!!
Some people think Lyme is not serious but it IS!!:eek:
LookmaNohands, I had babesia too. That’s one nasty disease and treatment. But, Lyme was the worst.
I got lyme disease and babeosis when I was living in PA. I didn’t get treatment till I moved home to Oregon ( basically stopped being able to function) and I was treated by this doctor.
http://www.ohsu.edu/xd/health/services/providers/bryantr.cfm
I’m better now. 
