My symptoms have fortunately been fairly mild since I got bit at the end of May, 2009. The fatigue, joint/muscle pain, and anxiety comes and goes and moves around, and I have days when all I have is mild pain in my neck and right hip joint. I get flares every 2-4 weeks.
I took Ceftin 500mg 2x/day for 3 months, and never felt like I had an obvious herx, but I had several flares and was definitely better by the end of the 3 months. I got worse again within 2 days of stopping.
I took Buhner herbs for 1 month, felt bad at first and then better by the end of the month.
Then I got diagnosed by an LLMD and started doxy, 100 mg 2x/day for the first month, and then double that starting 2 weeks ago. I had an obvious herx starting the 3rd day I was on it--everything hurt so much I stayed in bed for 3 days.
Then I went back to having up and down days where the pain and fatigue are worse or better, but not too horrible, and helped by sleep. I do have days when I just have a little pain in my neck and hip joint, but no days where I feel completely fine.
How can I tell the difference between a flare, a herx, getting worse, and getting better? I feel like I don't know which way is up sometimes.
I am sure I have Lyme, and I know I am doing the right thing in getting treated by an LLMD, and due to the initial herx, I think doxy is doing more than my previous treatments, but I don't know how to tell if I'm making positive progress or if nothing much is happening.
Or maybe I am just uneasy because I took the Ceftin for several months, and when I stopped, I was just as sick as before, as if I hadn't done anything.
Thanks for any advice or encouragement!
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
I don't have any advice but I know exactly how frustrating this is. My LLMD does a antibiotic cocktail, which works better for me than one antibiotic alone. I definitely got worse off the one antibiotic when I stopped.
-------------------- Lyme, Bart, possible Babs Currently on IV Doxy, Bactrim, Zithromax, Nystatin, Mepron Been on nearly every antibiotic since 10/09
Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
For me, getting better and finding out what is actually helping requires a daily journal of symptoms, what I was taking, activities, naps, etc.
Otherwise, you'll lose track of what is working, or assign ups or downs to the wrong things.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Sometimes it can take awhile to figure out which antibiotics are the most helpful.
Usually with Lyme, progress is slow, over time.
If you are better off today than when you first started the Ceftin, that means you've had some progress.
I would say to give the Doxy a couple months before you judge if it's helpful or not. After just one month, you could still be herxing.
The Ceftin on it's own was probably not enough, because you didn't treat all the forms of Lyme at once. With your LLMD, eventually he will probably add something to treat other forms of Lyme (like the cyst form), so that when the antibiotics are pulled away, you won't relapse.
"The Lyme Disease Solution" by Kenneth Singleton is a good book to explain some of this technical stuff, about the different forms, etc.
I would recommend it. You'll probably find it cheapest at www.amazon.com.Posts: 4590 | From Midwest | Registered: Jun 2008
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