Dan
I was offically diagnosed with L.D. about 13 months ago. However, I can remember years before this feeling symptoms consistent with the disease.
I have take LARGE quantities of antibiotics since being diagnosed......they have had mixed results. Overall, I'm somewhat better but certainly not normal.
I'm frustrated, tired and confused. I don't know what to think......am I going to need to be checked into the hospital for I.V. drugs????? I think I might welcome this option if it brings healing.
I'm currently taking Biaxin and Ceftin in the AM and PM. My Doc also has me taking probiotics (which I often forget). I've been on this current regimen for approx. 2 months. I have about another month or so to go yet until this course of drugs is supposed to be done.
In the past I have taken Doxycycline, Amoxicillin and Ceftin.
My chief complaint from the disease is the exhaustion that often hits me. It's really tough to be the father/husband/etc. that I need to be when I'm feeling so tired and bizarre.
Any thoughts on my situation?
Thanks,
Sam
Your current treatment: the fact that it has a definite ending date, rather than "until you're well", indicates a possible problem - or a misunderstanding. You should be treated until you are symptom-free, and then for a period of months beyond that (my non-MD opinion, of course)(said opinion is based on lots of reading, research, and advice from actual docs).
See about making your treatment open-ended: discuss it with your doc; check out Dr Burrascano's Diagnosis/Treatment Guidelines, 2002 (ILADS site) ; if need be, consider another doc.
Make sure you're getting a cyst-buster (like Flagyl) in the mix periodically.
Consider Babesia treatment if you have any of the symptoms - forget the tests for it, many people are testing negative but improving with treatment. I used artemisinin, it doesn't have bad side-effects/dangers of some other treatments.
Also, keep up with those probiotics. It can make a difference in your energy - it's a long-term thing and can be subtle, but it's important. For me, just eating a lot of plain yogurt- good, live stuff - was sufficient.
Dan
[This message has been edited by danq (edited 09 July 2004).]
I believe that mine was dormant for many, many years before my initial attack.
Rosemary
My case sounds just like yours. It started with the lyme flu last summer. However, like I said in the first post, I feel that I've had it for much longer.
Sam
I would be OK and then not OK. This went on for a long time.
Then I was fine for about a year and a half.
Several of us came down sick at work.
I have yet to recover.
It is complicated. The bottom line is how to get ones health back.
quote:
Originally posted by danq:
Your current treatment: the fact that it has a definite ending date, rather than "until you're well", indicates a possible problem - or a misunderstanding. You should be treated until you are symptom-free, and then for a period of months beyond that (my non-MD opinion, of course)(said opinion is based on lots of reading, research, and advice from actual docs).See about making your treatment open-ended: discuss it with your doc; check out Dr Burrascano's Diagnosis/Treatment Guidelines, 2002 (ILADS site) ; if need be, consider another doc.
Make sure you're getting a cyst-buster (like Flagyl) in the mix periodically.
Consider Babesia treatment if you have any of the symptoms - forget the tests for it, many people are testing negative but improving with treatment. I used artemisinin, it doesn't have bad side-effects/dangers of some other treatments.
Also, keep up with those probiotics. It can make a difference in your energy - it's a long-term thing and can be subtle, but it's important. For me, just eating a lot of plain yogurt- good, live stuff - was sufficient.
Dan[This message has been edited by danq (edited 09 July 2004).]
Listen up, Sam! Dan has given good advice!
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oops!
Lymetutu
Thats kind of what happened to me. Tweleve years ago, I used to get numbness in my big toes, 10 years ago, I started sweating under my underarms profusely- and Im tiny ( and a woman)
It took me 13 years from the appearance of the numb big toe issue and the sweating under the arms to come out with neurological lyme- furious neuro lyme.
Oddly enough, I got rid of the sweating problem COMPLETELY on antibiotics and can now not worry about that problem. Too bad I can't still look at anyone even though I no longer stink as I can't see straight.
By the way, I agree with what others stated- what do you mean when the antibiotics run out? They don't run out until the lyme runs out in your body.
Otherwise, its still lyme, you're still sick and youre still infected.
I fought Lyme for 7 years. Then no problems for 10 years until the combination of a stressful 2 weeks in Russia and on the job stress brought it all back again.
This time around has been worse than the first time around in my opinion.
So yeah, it was dormant in me and then came back fighting mad!
Mel
What symptoms made you feel like you had Lyme longer than one year?
My LLMD feels I was first infected in 1975. We had tics.. I woke up one morning with a huge rash on my breast. Our dog died months later without us ever finding out what was really wrong with her.
I had weird medical problems at intervals over the years but it was in July 2001 after having lost 150lbs that I just started to go downhill. A year later and 14 docs later I got dx with Lyme and with a positive serology from Igenex.
I was put on Ceftin 1500mg and Biaxin 1000mg. It took 4 months until I started to show improvement...but I did improve. Right now I consider myself 90% better.
Judith
Help with meds. http://www.freemedicineprogram.com/
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