posted
I've been treated for 5 years so how can I still have such bad neuro problems? They were better while on abx most of the time.
I had a really bad episode Monday (in another post)and ever since I have felt rotten. I can't stay up long without feeling like I'm going to pass out and like my leg will stop working again.
Yesterday, I couldn't remember how to do our monthly sales tax. I got very upset over that. It's a very simple form.
For those that didn't read my post about my episode, I couldn't speak or walk and I passed out. The ER dr said it was from lyme after doing a CT of the brain and some blood work.
He wants me to see a neurologist. Neuro sx are the only ones I'm having right now. The profound fatigue I've always had is gone. I have a more normal tiredness which feels really good.
Anyway, my first thought was no way am I going to see a neuro. As the week has gone by and I'm not getting any better other than I can walk and talk now, I am wondering if maybe I should.
I'm bad to always say it's lyme. It makes me wonder how I could still be this sick after all the abx I've had. Could it be something else? Since the CT was clear though I'm doubting it.
I've been having what I call brain vibrations when I try to sleep. Very weird. I would never tell a dr that though, they would have me committed. Would this be from lyme or a co? Anyone know?
Sorry this is so long. Any opinions would be greatly appreciated.
Sapphire
Posts: 495 | From KY USA | Registered: Dec 2004
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
Are you currently treating and/or seeing an LLMD?
That to me would be the first step, to check with your LLMD to see what he/she thinks about what's going on.
Also, just wondering what the weather has been like in your area when these sx hit. We just had a blizzard go through here, and I've been feeling weird both before and after (though oddly not during) the storm.
Any changes like that can wreak havoc.
When you were in treatment, were you treated only for Lyme or also for any coinfections? If the cos were missed during treatment, they could certainly be rearing their heads now.
I wish I had some better answers for you. Hope you soon feel better.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
Thanks Starfall for your thoughts. I'm a bit better this morning. That isn't saying much though.
I'm not seeing an LLMD anymore. I was just too sick to travel so far. I saw Dr. C for 3 years and I have improved tremendously but right now I can hardly see it.
I was doing bicillin shots till Sept. when my dr moved and I haven't had one since till just recently. She wants me to go back to see my LLMD. I'm just too sick and don't want to go back on abx.
I've decided to do the AI so I won't be going back on abx and just hope that I don't continue to go downhill till I can get started on it.
I have been treated for lyme and cos but think I may still have bart.
We have had some crazy weather for sure but I don't remember what it was like when this hit.
I think right now I'm just going to ride it out and hope it gets better. I don't feel like trying to convince a new dr I have neuro lyme. I'm pretty sure it's the lyme anyway.
Thanks again!!
Sapphire
Posts: 495 | From KY USA | Registered: Dec 2004
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
I'm sorry you are going through this! It sounds like some of my neuro symptoms. And sorry to say it sounds exactly like Lyme. That would also be the result with Occam's Razor. You have had Lyme, you have treated Lyme, and you just haven't finished treating the Lyme.
According to ILADS' treatment guidelines, one should treat for at least 3 months AFTER the LAST symptom of LYme has gone. But at least you have gotten this far! You are almost there!
According to what you have said, you just never completed ILADS' treatment per the guidelines, so it makes sense you are still suffering from the most difficult-to-treat part of Lyme, neurological infection.
I hope that you can find a LLMD closer to you, and go back into treatment. The longer you wait the more of your old symptoms, or new ones, will likely return or begin.
You will want to get antibiotics that are the most effective at reaching the brain and the rest of the CNS (Central Nervous System). Those are very hard to reach with antibiotics, and some don't reach it at all.
IV Rocephin is known for doing this very well. I forget at the moment what some others are.
Also, if you have Bartonella still, that can make treating the Lyme to completion difficult or impossible. Some infections make other infections more difficult to treat.
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