I don't know how many of the old gang are still here, but I'm back after almost two years of blissful reprieve from Lyme symptoms. It was a great run, but alas, bad things are flaring up again.
I got symptom-free from my last relapse with a spectracef/minocycline combo. I was on it for close to 10 months, and I thought I had fully licked it. Now, my neuro symptoms are back. They include: - tinnitus - ear pressure - headaches - inability to sleep - muscle spasms in legs - facial and arm tingling/quasi-numbness (a brand new symptom for me!)
Since I've been out of the loop, I don't know what current thinking is on the best abx for neuro-Lyme (I'll need something that passes the blood-brain barrier). I'm inclined to just get back on spectra/mino, but recognize that the Bb left in my system could be resistant to it.
Please drop me a quick line if you have suggestions for what abx I ought to try. My doc is not LLMD. I'm in Utah, so none of those here. But he's a great, open-minded guy who has followed my requests for abx in the past.
Thanks very much in advance!
Jeff
[ 29. January 2007, 09:58 AM: Message edited by: thomps14 ]
Posted by bettyg (Member # 6147) on :
also, i'll pm you with some other info! private message. Posted by Michelle M (Member # 7200) on :
Sorry that you're back, but welcome.
Good old doxycycline is a good start. Minocycline is a good crosser. Also, very high-dose amoxicillin in conjunction with Probenecid to keep blood levels high is said to cross the blood-brain barrier in the presence of infection.
How about coinfections? Were you tested?
Good luck; great news that you have a good duck!
Michelle
Posted by thomps14 (Member # 3334) on :
Thanks for the responses. I actually never was tested for coinfections, but didn't worry about that too much after being symptom-free for so long.
Which coinfections are most likely to yield the symptoms I'm having?
Jeff
Posted by 5dana8 (Member # 7935) on :
sorry to hear about your recent flare of neuro- lyme
here's some links on abx's that cross the blood brain barrior:
Ditto with MichelleM -I would also look into treatment of the co-infections. There is some info in the newbie links but more to be found if you go up to search and type in babs, bart ect.. Sorry I don't know exactly which ones contribute most to neuro symptoms.
Hugs & healing Dana
Posted by Lymetoo (Member # 743) on :
Hi Jeff! I'm sorry you are back.
Why don't you ask your dr to give you a trial run of zith and artemisinin? That would give you a clue as to whether or not you're dealing with babesia.
The next one you could try for would be bartonella. I believe that one needs levaquin or cipro.
Do you think you could have been reinfected? Any pets in the home??
Have you taken Biaxin for the Lyme?
again, welcome back Posted by thomps14 (Member # 3334) on :
Good to hear from you again, Lymetutu!
Should I think about JUST doing zithro and artemesinin, or should I do that alongside something targeted specifically at Lyme?
Zithro is an abx, right? Sorry, I'm a bit rusty on this stuff!
I think there is very little chance of reinfection. I live in Utah now and have no pets. Haven't seen a tick of any kind in four years (don't miss them!).
I did do biaxin when I was first infected. It didn't seem to do much for me.
So nice to "hear your voice" again!
Jeff
Posted by bettyg (Member # 6147) on :
quote:Originally posted by thomps14:
Which coinfections are most likely to yield the symptoms I'm having? Jeff
jeff, in the newbie links i sent you early this am, look for betty's lyme brochure; click on there and it shows all the LDA's co-infections symptoms and treatments for EACH of them ok! Posted by micul (Member # 6314) on :
Mino and Spectra was a good combo. I don't think that there would be a problem in using it again, but what might (or probably did) have happened is that you didn't use a cyst buster long enough. You didn't say if you used Flagyl or Tini or Plaquenil at all, so maybe you weren't even put on one? If so, then the cysts were left to reinfect you with lyme. You have never gotten rid of it if you still have cysts in your body.....They are a ticking timebomb.
You could also have a coinfection that wasn't treated properly. The problem with testing that theory with abx is that you can't really pinpoint which one it is. Babs and Bart are both succeptable to Zith. Now would be a good time for coinfection testing since you have been off abx for a while.
Posted by psano (Member # 7785) on :
Thomps,
I hate to hear stories like yours, and I'm determined not to let the same thing happen to me. I have to ask, while you were off of abx, did you do any preventative treatment, i.e., herbs, rife, etc?
This illness is so devastating that I don't ever want to experience it again after my MDs tell me I can quit taking abx.
Posted by thomps14 (Member # 3334) on :
Hi Psano. This is my second major relapse, but I have enjoyed good stretches of really good health in between. And the good news (at least for me) is that the first relapse was nowhere near as bad as the first illness! I'm hoping that holds with this new one too.
After my last round of abx treatment, I kept up on some supplements for awhile -- mostly vitamin B and magnesium. Eventually, though, I felt so well and normal again that I went back to normal life and virtually no supplements (other than basic vitamins). I don't know whether that was a mistake, but it was such a relief to just live again and not be preoccupied by health concerns!
If I have any regrets it's that my LLMD never seemed too concerned about coinfections, and I wonder whether that's what I'm dealing with now. And now, with no LLMD anywhere near me, it's a little overwhelming to think about how I can address that.
Wishing you a return to health -- and PERMANENT relief from Lyme!
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