Hi, I too am looking for a LLMD in your area as well. How did it go? Were they able to provide you with a diagnosis? I too believe I am suffering from lyme disease and "lyme brain" and need to find someone around me. I live in bucks county about 8 min from newtown PA. Would you recommend either of those 3 doctors you visited? Also me email is mhfinances (at) yahoo (dot) com
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ok ty for the heads up. I got into it with these guys before I actually had called them personally because they told me that I was over posting in different "unrelated" forums. Turns out they were all related and I had my posts put back up turns out they wanted me to violate my rights of HIPA which I told them I would not do. My posts quickly returned to their forums lol. But thanks for the heads up I wont post my email anymore. BTW I did contact ILADS which you suggested and am awaiting an answer...I did notice the person who is the treasurer of ILADS practices medicine about 2 hours outside of philly I might try and make an appointment with her.
I have had brain fog forever and found Lyme Lesions in my brain after a brain MRI. It is very scary and frustrating not being able to come up with name or remember where I put things. I know a doctor in Northern VA if you cant find one in your area. I went to my first real LLMD Monday. The others were just regular doctors that werent helpful.
I hope your appointment went well. My first consultation was 90 minutes and it was wonderful to talk to someone who validated everything I said, and even asked great, detailed questions to clarify my symptoms. Before that I only got blank stares or looks of doubt and annoyance.
I also had brain fog and they found about 20 brain lesions in my MRI. I have follow up MRIs scheduled in April. I'm really hoping one or more has healed. But there's one upside...when my husband complains about something I did, I just remind him that I have brain damage. ;)
Did your Lyme doc order a SPECT scan? I've read that it is more diagnostic of and sensitive to the *swelling* that Lyme causes in the brain, where MRIs look for *lesions* such as in MS and are not all that helpful in diagnosing Lyme. fwiw
Yes it was so wonderful. It was 3 hours and we didn't scratch the surface so I am going back on the 30th. What did they tell you to do for your lesions? Do you have memory, balance, muscle weakness issues as well? They told me a small part of the white matter will never come back and it is scary.
I use the same excuse on my fiancee, LOL, I cant remember, I have brain lesions. Well we need to laugh at something. What meds are you on?
Thanks for your comments because it is awful to be looked at like your nuts for people who don't believe or understand.
They didn't say anything in particular, other than that some people's lesions do heal, others' do not. They encouraged me to get the follow up MRIs to check and see, as a decreasing number of lesions or even a stable number is further confirmation that we're on the right track.
They did put me on Meriva Curcumin, which is a natural anti-inflammatory. I did some research and in parts of the world with a lot of curcumin in the diet, rates of Alzheimer's disease are noticeably lower. I'm going to take this supplement for a while in the hopes it will help my brain.
I did have memory issues (still do somewhat), and balance issues only occasionally. I would find myself off balance when I was turning a curner and my shoulder kept hitting door frames and walls. It would also happen if I stood up and turned to walk at the same time. That only happens rarely now, after 3 months of abx. Every time a doctor would check my gait during an appointment, I could always walk just fine, because I would focus on it and go in a straight line. It would happen at home when I was thinking about something else, and shifting my balance. I call it a clumsy or "tippy" feeling. I've seen other people talk about the "drunk walk."
I have not had any muscle issues, such as pain or weakness. Whenever I needed to squeeze a doctor's hand or push back with my leg, I always "passed" the test. Although I have felt so tired I couldn't really do anything.
This animated cartoon will make you both laugh and cry.
OMG, that cartoon was exactly how I was treated when I was in Texas, over medicated and looked at like I was nuts.
In my Texas support group, a doctor in Houston who also had Neuro Lyme, with the lesions etc wrote me and said that I had to get treated and there were no LLMD's in San Antonio before my family doctor kicked me out (true) she gave me doxy only because it helps skin problems which I had. That low dose, not a Lyme dose, got me much worse and the symptoms recycled every four weeks. That is when one day, I could not open the fridge, or cabinet, I was so weak. I was all alone and felt so helpless. Now in FL, I went to my first real LLMD as I said and it is so wonderful to no be thought of as nuts.
With healing thoughts and wishes.
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