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Lyme, Brain Scan & Spinal Tap

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Posted 1/10/2014 12:49 AM (GMT 0)
I had a Brain Scan that shows demyelination from some disease. My neuro said it is not MS but did not say what else it could be. I do have a lot of symptoms and am not being treated for anything right now. We are just waiting to see if things stay the same or progress.
My question is why could they not find out more from the Spinal Tap. If they could rule out MS why could they not look for other things in the fluid they tested? Wouldn't they be able to see if this was Lyme related?

Thanks!
Posted 1/10/2014 1:10 AM (GMT 0)
In my opinion, the fact that they "are waiting" even when delyelination is present in the brain scan tells me that you may be dealing with a medical professional with little knowledge on the disease. Most rather put you on antibiotics now "just in case" than to wait and let things get worse.

Please get yourself to someone who is more familiar with tick-born-diseases. You will be glad you did.
Posted 1/10/2014 8:35 AM (GMT 0)
hi sueg, I agree with healing. They don't need to be waiting on anything. yes, there are all kinds of tests that can be done on spinal fluid, tests for specific bacteria, viruses, and fungal infections.

A lyme test can be done off spinal fluid. anyone else chime in for more info.

I would def get a llmd and have more testing done. jackie
Posted 1/10/2014 5:27 PM (GMT 0)
I agree with the masses on here...find a doctor soon that knows their stuff! I have funky unspecified matter in my brain and my neurologist put me on LDN (low dose naltrexone). That coupled with the IV treatments my brain is stable and when I go back in May for a follow up MRI and visit I know that the inflammation would have gone down :-)

But yes...find a neurologist that knows their stuff.
Posted 1/11/2014 3:20 AM (GMT 0)
I am checking to find a LLMD in my area. I will make an appt. to see him and have tests done. I wonder if any of you have Chronic or Late stage Lyme--I think that is what I would have, because whatever I have it has been here many years and only showing neurological symptoms the last 6 months. Weird!

On another note, I was on a high dose of abx for an infection 1500 mg each day of Cephalexen for 10 days and felt so good for about a month or more. Such a coincidence...........
Posted 1/11/2014 3:31 AM (GMT 0)
Curious to know what neurological symptoms did you have for your doc to do a brain scan? I have tingling in my neck and down in my hand but also dizzy/vertigo that really makes me feel bad. I bet alot of people are diagnosed with MS when in fact they have Lyme. My ins isn't the best so I haven't had any tests like that. I've been dealing for 15 yrs now but thank God I had Ayervedic medicine for about 6 yrs plus to help me along with the symptoms. Wish I had all the money back that I spent trying to find out what's wrong.
Posted 1/11/2014 3:56 AM (GMT 0)
I have had days of extreme fatigue, aches, and sick all over feeling for years. And I was told that all of that was Fibromyalgia. Then back in the fall I started to have numbness in my fingers, leg, and lips, weakness in my arms, daily headaches, vision problems, extra heartbeats, constipation, urinary trouble, depression, dry mucus membranes, memory issues,
trouble swallowing, and other things. I thought I was going downhill fast! So I asked my Rheumatologist to refer me to a Neurologist.
I don't have a diagnosis for anything yet and the neuro doc said some patients never get any further than this. But I figure that it's worth checking out the Lyme road....
Posted 1/11/2014 4:03 AM (GMT 0)
Also I wonder when treatment for LD is finished will the brain demyelination disappear? And is healing a real possibility?

Thanks
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