I'm trying to find LLMD's near me. Have not had much luck yet. I found a psychiatrist who said she knows of a neuro LLMD at a nearby hospital. She told me to call her on monday to get his info. I'd like to find another LLMD in addition to him though- just in case.
Testing for both has been negative but I had the classic bullseye rash then all the symptoms started. I have been treated with antibiotics more than once when I relapse. It has helped each time. I will probably never know for sure.
From my experience the neuro's I saw knew very little about lyme. Your symptoms sound very similar to mine. Since you live in an endemic area it is far more likely to be lyme. I had to travel to your state for treatment.
I will be seeing neuro soon. His office will call me on monday to set an appt. He's ordered blood work and a brain MRI so far.
I've already have a lumbar spine and cervical spine MRI ordered by my ortho b/c this is first was thought to be a sciatica type issue.
My symptoms started off mostly on the left but have moved all over to both sides of my body. My hubby works at a med school so I'll first be seeing a Neuro there. My hubby emailed him yesterday and he called us right away! I told the Neuro of my symptoms- he said it does not sound like either MS or Lyme. But he ordered blood work and a brain MRI and will see me as soon as he can. I also got the name of a neuro/LLMD from someone else that I will likely consult for a 2nd opinion if need be.
I'm also going to an internal med doc Jan. 12th from U-Penn. I'm sure she'll do some blood tests too. I'm just getting started. I'm dtarted wit hthe Ortho only b/c it seemed like sciatica at first.
Wonko- YES! I'm def in a Lyme hot spot. We have like 4 deer out side on a daily basis. You'd think we have a dog from the looks of our front yard but it's all deer poo according to my hubby.
Patsy10- What were you dx with- Lyme or MS or are you still not sure?
How did your symptoms present? In MS, the symptoms are caused by lesions that are unlikely to initially cause bilateral symptoms. So if you get aches, pains, and sensations like burning on both sides, or if it changes sides, that is less consistent with MS.
Have you been though any testing yet? It is not uncommon for Lyme patients to have lots of that "weird stuff" going on, but still look good on tests. The blood tests for Lyme are not that reliable and miss a lot of cases, though a lot of doctors don't know much about that.
From your profile I see you are in Bucks County, which is endemic for Lyme disease. You don't need to recall a tick bite or red rash. I now live in MD but think I got infected while living in Philly.
You may want to read more about Lyme on the ILADS (International Lyme And Associated Diseases Society) site and the Columbia Lyme and Tick-Born Diseases Research Center. There is also a very eye opening book called "Cure Unknown" by P. Weintraub and a documentary (with clips online) called "Under Our Skin." All of this stuff is easy to find online and are a good place to start learning more about Lyme.
I have all of that. There are numerous symptoms that overlap between MS/Lyme. I have all of what you listed and have repeatedly tested negative for MS. Have you had MS ruled out?