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Suffering From Late Stage Lyme. On Medication. Neurological Symptoms Getting Worse. Is This Normal?
Question: Hi, I have been totally disabled for 1 year now . For starters I have late stage lyme? ( positive bands 23 and 41 igm. last month)
Every time I try to take Biaxin/Plaquenil it makes my neurological symptoms way way worse. Is this normal? I cannot tolerate this. I also was diagnosed with "aggressive MS" (spinal tap +10 bands ongliclonal and 3 Brain lesions, 1 spinal cord lesion). Its been almost 5 months since the MRI and tests and I have to wait full 6 months for the repeat MRI to decide if its MS, Lyme or Both. Healthcare here in Boston is not so good these days. The symptoms that have crippled me are extreme pressure in my head, ears, eyes, weakness all over but bad in legs, jaw is very hard to open and close. I have a lesion on my right brachium pontis part of my brain and a couple others. I have the reports and most lab work. Any ideas? At BWH hospital MS clinic I saw a dr. who said he wants to wait 6 months and repeat tests before concluding its MS. He also thought I might have scaloderma and Migraines My other Drs dont think scaladerma is correct. They think aggressive MS. Primary said "sed rate is fine" and no rash.This morning my blood pressure is 108/91
Symptoms are very uncomfortable every day. For some reason I get attacks that are much worse. These attacks last a few hours to a few days. I have increased head, eye, ear pressure and throat pain, jaw weakness, trouble speaking (very low voice, slow and slurring like I am drunk or something) Its very scary!
Every time I try to take Biaxin/Plaquenil it makes my neurological symptoms way way worse. Is this normal? I cannot tolerate this. I also was diagnosed with "aggressive MS" (spinal tap +10 bands ongliclonal and 3 Brain lesions, 1 spinal cord lesion). Its been almost 5 months since the MRI and tests and I have to wait full 6 months for the repeat MRI to decide if its MS, Lyme or Both. Healthcare here in Boston is not so good these days. The symptoms that have crippled me are extreme pressure in my head, ears, eyes, weakness all over but bad in legs, jaw is very hard to open and close. I have a lesion on my right brachium pontis part of my brain and a couple others. I have the reports and most lab work. Any ideas? At BWH hospital MS clinic I saw a dr. who said he wants to wait 6 months and repeat tests before concluding its MS. He also thought I might have scaloderma and Migraines My other Drs dont think scaladerma is correct. They think aggressive MS. Primary said "sed rate is fine" and no rash.This morning my blood pressure is 108/91
Symptoms are very uncomfortable every day. For some reason I get attacks that are much worse. These attacks last a few hours to a few days. I have increased head, eye, ear pressure and throat pain, jaw weakness, trouble speaking (very low voice, slow and slurring like I am drunk or something) Its very scary!
Hello!
Welcome to healthcare magic
I have gone through your reports and history. The features favor multiple sclerosis. The MR faeures suugest that the lesions are most likely to be demyelinating plaques also presence of oligoclonal bands favor MS. Negative serology would make lyme's unlikely.
Odd point is that inspite of just 3-4 lesions, you are pretty much disabled and the absence of contrast enhancement say that these lesions are little older (?burnt out) and atleast not active. I would have expected better recovery in your case.
Just get your NMO antibodies done, as the lesions are more periventricular rather than classical pericallosal, neuromyelitis optica would be my other differential
The symptoms are due to brainstem lesion and should slowly improve with time. For your jaw and body stiffness, you may need a small dose of antispasticity medication. Consult your MS specialist he will optimise your treatment.
If you have some more issues, feel free to ask.
Best Wishes,
Dr. Neeraj Baheti
Welcome to healthcare magic
I have gone through your reports and history. The features favor multiple sclerosis. The MR faeures suugest that the lesions are most likely to be demyelinating plaques also presence of oligoclonal bands favor MS. Negative serology would make lyme's unlikely.
Odd point is that inspite of just 3-4 lesions, you are pretty much disabled and the absence of contrast enhancement say that these lesions are little older (?burnt out) and atleast not active. I would have expected better recovery in your case.
Just get your NMO antibodies done, as the lesions are more periventricular rather than classical pericallosal, neuromyelitis optica would be my other differential
The symptoms are due to brainstem lesion and should slowly improve with time. For your jaw and body stiffness, you may need a small dose of antispasticity medication. Consult your MS specialist he will optimise your treatment.
If you have some more issues, feel free to ask.
Best Wishes,
Dr. Neeraj Baheti
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Thank you very much. I will get this NMO antibodies test. neuromyelitis optica is probably the only thing we havent looked at, so thank you for this advice.
I am very happy with this opportunity to have a good Neurologist review my case.
I am very happy with this opportunity to have a good Neurologist review my case.
Thank you.
In future if you have any more queries, i will be happy to address.
If you don't have any more queries, please close this thread.
Best wishes,
Neeraj
In future if you have any more queries, i will be happy to address.
If you don't have any more queries, please close this thread.
Best wishes,
Neeraj
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
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