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Posted 3/8/2014 1:33 AM (GMT 0)
I was diagnosed with Neurological Lyme in September. After IV antibiotics for 28 days I felt 100xs better. I still had one symptom, stuttering. The ID dr told me I was cured and that I should see a speech therapist. I felt he was wrong. I seen speech pathologist and he said I had other neurological damage and I should seek a 2nd opinion from Neuro Dr. Neuro dr said I should see a psychologist :(
A week later my Lyme tests come back positive with active infection. I have no faith in drs. They're here to help us but show no interest in our problems. I feel like giving up. I am tired of appointments, searching for info and just thinking about this disease.
Posted 3/8/2014 1:49 AM (GMT 0)
oh, no! you stopped the antibiotics just after 28 days? you are supposed to take them 2 months after the symptoms are gone. =(
Was it a LLMD you went to?
Posted 3/8/2014 1:57 AM (GMT 0)
Hi I would stop seeing the ID doc and try a llmd. I know people who have needed abx for 2 years. I have also relapsed every time I stopped them. You need longer treatment and possibly you should try oral if it is easier for you. Good luck.
Posted 3/8/2014 1:59 AM (GMT 0)
Hi Simplyfrustrated,
I'm so very sorry that you went though all of that! shakehead But that is exactly why we don't suggest - and even try to discourage - members from seeing ID docs! That's all the treatment they "deem" is necessary - whether the person still has symptoms of an active infection or not! And if it comes back, they tell you it's PTLDS - Post Treatment Lyme Disease Syndrome - or some BS.

You need to find a LLMD or LLND that has had ILADS training to treat you appropriately.

If you let us know what kind of information you are seeking, I bet we could be a big help!!
Posted 3/8/2014 2:15 AM (GMT 0)
Hi Trav seems kind of strange for these ID docs et al. to say the disease is "Post Lyme Syndrome" etc. when it is actively attacking your central nervous system, doesnt it ? If your speech is effected disease is effecting your brain. I also had speech problems, memory problems and vision problems which medication has helped to correct.
Posted 3/8/2014 2:17 AM (GMT 0)
Yeah, it's pretty crazy for them to be saying that it's "post" anything when there is still an active infection going on - but it's about politics, not helping people, so anything goes.
Posted 3/8/2014 2:17 AM (GMT 0)
oral antibiotics did nothing for my symptoms. The IV was great. I thought I needed more but he said I was cured so I felt defeated. I want to see someone who is familiar with this disease, totally and completely. I live on Staten Island in New York. Do you know any GREAT LLMD?
Posted 3/8/2014 2:18 AM (GMT 0)
Someone here will be able to help you. Id try to get help as soon as possible.
Posted 3/8/2014 2:22 AM (GMT 0)
If you would send me an email, I'll be working on those requests tomorrow. I'm about to sign off for the night now. Please be sure to tell me in the email that you are looking in Staten Island. Thank you!!
Posted 3/8/2014 2:37 AM (GMT 0)
I live on long island and am seeing an llmd in the city. I will send you the info. I also got an email from a link traveler sent me. I will send you those docs as well. So sorry this has happened.
Posted 3/8/2014 2:43 AM (GMT 0)
Thanks so much.
Posted 3/8/2014 11:48 AM (GMT 0)
simplyfrustrated - you will have to allow your email to be seen in order for me to email you the info - I can't post names on here, ok?
Posted 3/8/2014 6:31 PM (GMT 0)
Biaxin is working well for my neuro issues. Doxy and Zithro did not help at all.
Posted 3/8/2014 6:45 PM (GMT 0)
when referring to "neuro" lyme - is that when the brain is affected? or does neuro lyme mean anything that has to do with the CNS (like nerve pain and tingling?)
Posted 3/8/2014 7:39 PM (GMT 0)
Neuro Lyme almost always means the CNS and PNS symptoms. Usually the brain is affected by toxins, although there can be swelling of the brain and some symptoms like that, which isn't due to toxins, but the infections.
Posted 3/8/2014 9:59 PM (GMT 0)
thanks for the clarification Traveler!
Posted 3/8/2014 10:07 PM (GMT 0)
:-) You're welcome!!
Posted 3/9/2014 12:53 AM (GMT 0)
As for me Neuro Lyme took my hearing away in my left ear (but with prednisone, returned). It has made me stutter which I never had. Along with Bells Palsy, vertigo, sensitivity to light, couldn't read, ringing in my ear, couldn't focus, brain fog, low grade fever, ect. I didn't have those aches and pains most people have with Lyme but all my symptoms were debilitating. With the picc line most of the symptoms are gone. I still have the stutter under certain circumstances, I find it hard to concentrate, and I forget things. I have other symptoms but there not major as of right now.
Posted 3/9/2014 2:06 AM (GMT 0)
Hi Chapelle,
I never realized that I didn't post my email, sorry. I have since updated my profile. Thanks a lot.
Posted 3/11/2014 1:36 PM (GMT 0)
ITs ok, but now my computer won't let me send you one! There is some weird pop up thing stopping me, I am so sorry. I didn't forget about you! I activated my email, so if you could just send me a "hello" then I will be able to reply back with the info!! my apologies again!!!!!
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