posted
I have not yet been 'officially' diagnosed, only scoffed at by one neurologist, shrugged at by a neurosurgeon (who of course wants to cut on me), dismissed or otherwise not dealt with by two orthopedists, another neurologist, and the GP who had treated me the first time and I had hoped would be my savior....not.
My question is, until I finally find a LLMD and get the hell outta this, which drugs (or natural treatments) have people had success with alleviating the following symptoms?
Tonight -trouble chewing -trouble swallowing (almost choked) -suddenly overwhelmed, sensory overload, -felt like some kind of psychotic episode -seemed like everyone was yelling/arguing (they weren't) -thought I was dying...was I?
I really feel like my world is coming down around me. I've got 3 kids and they don't know what is happening to Daddy...and I had so many plans for them this summer.
Any real and helpful advice appreciated.
PS > So far I am taking: -Neurontin 300-600 mg -Xanax 0.25 mg -and one night only (tonight) I took two Valium 10 mg (skipped the Xanax).
Sincerely, LocalMan
[ 14. June 2007, 11:00 AM: Message edited by: LocalMan ]
Posts: 212 | From Eastern CA | Registered: Apr 2007
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Cobweb
Unregistered
posted
After I had a spect scan-, my LLMD put me on IV rocephin.
I made the rounds of specialists,too, but didn't get any real help until I went to an LLMD.
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
High-dose amoxicillin has been helpful for my neuro-symptoms, though it took me sometime to build up to an effective dose.
Also, you should read Buhner's Healing Lyme book; he has great research and has a core herbal protocol and suggestions for neurolyme that have been truly helpful for me.
Supplements like huperzineA/gingko, vinpocetine, and lecithin can help, but in my opinion I recommend them in conjunction with appropriate medical abx treatment.
Hang in there! It can take sometime, but treatment truly works for neurolyme. Here is hoping that you will find an llmd as soon as possible
Posts: 2557 | From home | Registered: Aug 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Here's some links on antibiotics that cross the blood brain abrrior which can hit neuro lyme better:
Hope you can find a LLMD soon. In my 20 years experience with lyme they are the only ones who know how best to treat neuro lyme.
Hope you can feel better soon Dana
none of the above is medical advise...just my 2 cents
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Sorry to hear your plight, but as you know, we've all been there.
I'm no doctor, but you sound like you have many Bartonella symptoms (coinfection). And IMHO, Rifampin is most effective on Bartonella. For me Levaquin did not touch it.
Some Rhodiola (an herb) might help with the anxiety - it's sold at many health food stores. You might want to try it twice a day on an empty stomach.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
High dose doxycyclene got things under control. After all the specialists told me I was nuts I convinced my PCP to try abx. One month at 300 mg a day, month 2 at 400 and month 3 at 500 did the most good of any treatement regimen so far. Even convinced an ID doc that I have lyme disease based on the improvement with doxy despite negative tests and history of EM.
Doxy knocked out alot of major symptoms and kept me functional. Surely your PCP will treat you with doxycyclene...so much potential benefit and next to no drawback. Improvement itself would be more reliable confirmation than any tests. They treated you originally, perhaps not enough, but they treated you.
I also had an MRI that suggested UBOs secondary to vasculitus or demylenating conditions possibly associated with lyme disease or lupus. That helped convince my PCP, but not the nueros.
My PCP (same guy) also treated me when I had the rash five years prior, so the records helped. Good luck, Mike
Posts: 87 | From Yorktown VA USA | Registered: Jul 2005
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