posted
I'm having a rough time...2+ years in treatment with no improvement on the following protocols:
tetracycline (3 months)- no improvement
Biaxin / plaquenil (4 months)- supressed some sypmtoms while on it but not curative
minocycline (1 month)- doc took me off to try ketek and Bactrim
Bactrim - possibly had an allegy as had mouth sores after one week
Ceftin / Ketek (1.5 months) - took me off for more aggresive treatment with IV
IV Rocephin (3 months)- no improvement
IV azithromax (2 months)- supressed some symptoms while on it but not curative - had to go off because of severe CNS toxicity
IV Doxy (3 weeks)- could not tolerate / could not function
oral doxy / rifampin (3 months)- no significant improvement
levaquin (6 weeks)- some breif improvement but developed tendon pain in knees and achilles
My doctor in NY is now pulling treatments out of
his hat because he is as perplexed and frustrated
as me. I had Lyme and Bartonella but I feel like
I've probably kicked the Lyme with just the
Bartonella remaining. All of my syptoms are
neuro (fatique, horrible headaches, tingling in
face and various body parts, pinprickles in head
and body, anxiety , mood issues, neck pain /
cracks, random pains in head..I could go on).
I'm at the end of my rope! I've also been
doing the Cowden protocol and a few other adjunct
therapies - all to no avail. The doc is now
thinking mino / plaquenil / malerone and if this
doesn't do much then try Bicillin shots. Maybe
even retry Bactrim to see if I really am
allergic. I'm scared as hell that this is
it...what do I do next - will I ever get
better?? I am (was) a serious athlete and my
doc told me yesterday that I need to stop doing
any exercise for 3- 6 months (increasing my
heart rate and body temperature for extended
periods of time increases my symptoms). I 'm
willing to do this but still scared this won't help. I don' t know what to do!
Posts: 98 | From cambridge ma | Registered: Oct 2005
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Nicollette,
You have all of my symptoms and are an athlete as well. I have only treated w/Rocephin IV so far.
Exercise also exacerbates my symptoms and I have not done so since November 17th. That was a very sad decision for me because being fit is part of m nature.
After researching many, many hours, I really think that it is Bart that is kicking my butt too....especially the neuro psych aspects.
Dr. S in Florida has a free 5 minute consult on his website and will call you personally. He is very knowledgble about Bartonella-cutting edge knowledgable.
He will give you suggestions for free but if you decide to see him, it is very expensive.
Best, Rhonda
Posts: 3975 | From usa | Registered: Aug 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Your pm box is full!
Posts: 3975 | From usa | Registered: Aug 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
If you feel it's bart and can't take Levaquin, how about Rifampin?
I know I made great strides after treating my bart. Cleared my cognitive symptoms and GI symptoms right up.
Right now I'm on Rifampin (after three months Levaquin), mino, plaquenil, tindamax (one week per month), malarone (1 per day), Artemisia, Lariam (1 every five days). I take four of the Cowden herbs and a bunch of supplements/probiotics, too.
Except during tindamax week, which is when my herx falls, I feel pretty much back to normal.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I cleaned out my mailbox.
Posts: 98 | From cambridge ma | Registered: Oct 2005
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Peacesoul
Unregistered
posted
I've only been on abx (zithro/doxy/flagyl) a little over 2 months and I feel no improvement at all. I know it's too soon to tell, but what I found odd is I'm not sure if I'm not feeling well from the abx or the lyme.
I too was (am) a person who worked out. I lifted weights for over 8 yrs and now I'm not able to. I tried 4 weeks ago and boy did I pay for that. I used to be able to work out with heavy weight w/out problems. I can say for sure that's the abx though. I've been sick for 13 yrs and working out used to make me feel very well. I hate that I have no energy to work out.
Since you're not doing well so far on all these abx, have you looked at other things like diet, detox etc? Just a thought.....
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tailz
Unregistered
posted
Go to www.antennasearch.com and find out how close you are to cell phone towers in your area.
I'm a little better but by no means cured. Microwave sickness from power lines and nearby cell phone towers seem to be triggering my bugs.
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