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spinal tap this week.

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Lyme Disease
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Posted 4/29/2017 3:14 PM (GMT -5)
I have been diagnosed with both Lyme and Sarcoidosis. They are checking my spinal fluid to see if either or both are causing the lesions in my brain. Does anyone know about this? I am a bit nervous about it.
Posted 4/29/2017 3:30 PM (GMT -5)
Honestly - I wouldn't get a spinal tap. You've been diagnosed with Lyme disease.

Lyme can cause lesions on the brain...so why not treat the Lyme infection?
I've read that the treatment for Sarcoidosis is steroids. That won't be good if you have lyme disease and co-infections because it will suppress your immune system.

So, you need to decide what the spinal tap will tell you...and will it make a difference on how you treat? If not...then why do it?
Posted 4/29/2017 3:31 PM (GMT -5)
How was the Sarcoidosis diagnosed? symptoms? or?
Posted 4/29/2017 4:12 PM (GMT -5)
about 7 years ago, I had nodules removed from my lungs and was told it was sarcoidosis. I was led to believe it was not a serious disease, usually went away on its own. Actually, today I would not accept that. After I was treated for Lyme and the symptoms returned, I had a brain MRI and was sent to a neurologist. One who really seems to know her job! I am going along with the spinal because I want to find out all I can. My life is miserable and almost useless so I want to find an answer if I can. I know steroids are not good, especially since I have bad osteoporosis. Once I know what all I am dealing with, then I can make my choices. Thank you both for your input.
Posted 4/29/2017 4:44 PM (GMT -5)
From what I understand, spinal fluid rarely shows Lyme even when it's firmly entrenched in the nervous system. It does raise the risk for Lyme complications though. If you have Lyme, it's a risky procedure with not much added value. If it shows that it's in your spinal fluid, you will continue treatment. If it shows that it's clear, will your dr stop treating? Lyme is a seriously evasive bacteria.
Posted 4/29/2017 4:50 PM (GMT -5)
Chick - I think the spinal tap is to see if it shows Neurosarcoidosis -


"Blood tests are not very helpful in diagnosing the condition. A lumbar puncture may show signs of inflammation. Increased levels of angiotensin-converting enzyme may be found in the blood or cerebrospinal fluid (CSF). However, this is not a reliable diagnostic test.
MRI of the brain may be helpful. A chest x-ray often reveals signs of the sarcoidosis of the lungs. Nerve biopsy of affected nerve tissue confirms the disorder."

www.nytimes.com/health/guides/disease/neurosarcoidosis/overview.html

Ryman - what does the LLMD say about the Sarcoidosis?
Posted 4/29/2017 4:58 PM (GMT -5)
You may want to see if you can arrange for an extra 5ccs of spinal fluid to be sent to Thomas Grier. He may be able to examine it under a microscope for spirochetes, which would be very interesting information for you to have:
https://www.youtube.com/watch?v=p-7GIinA9GY
Posted 4/29/2017 5:02 PM (GMT -5)

Girlie said...
Chick - I think the spinal tap is to see if it shows Neurosarcoidosis -


"Blood tests are not very helpful in diagnosing the condition. A lumbar puncture may show signs of inflammation. Increased levels of angiotensin-converting enzyme may be found in the blood or cerebrospinal fluid (CSF). However, this is not a reliable diagnostic test.
MRI of the brain may be helpful. A chest x-ray often reveals signs of the sarcoidosis of the lungs. Nerve biopsy of affected nerve tissue confirms the disorder."

www.nytimes.com/health/guides/disease/neurosarcoidosis/overview.html

Ryman - what does the LLMD say about the Sarcoidosis?

Ah, I see. Well that's a different story then. I can understand why you are getting it done.
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