The first month was hard with a lot of herxing, but the past six weeks or so I've been much better.
It's like a better version of my pre-treatment symptoms. Some dizziness and fatigue, and occasional moderate joint aching. So, some symptoms still there, but much improved.
I know that most LLMDs will treat until two months past the end of symptoms, but am wondering if these mild symptoms continue (as they have) should we just call it a day, or should we continue with treatment? I absolutely hate being on the pills.
When I was first diagnosed, my (non-LLMD) Doctor said that there is typically a post-disease inflammation period that takes a few months to resolve. Maybe that's what's going on now? What have you guys found is typical with the resolution of lyme arthritis symptoms?
Thanks.
Posts: 63 | From Catskills, NY | Registered: Mar 2012
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posted
I would stay with treatment until you are symptom free for two months. This stuff relapses.
I wouldn't take the risk to have to go through it all over again.
Posts: 845 | From Northeast | Registered: May 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Sorry to say but everything your non-LLMD told you is erroneous. There is no post-disease inflammation period. The non-lyme doctors have been taught this, but it isn't so. They call it "post lyme disease syndrome."
Instead, lyme is like every other disease. It needs to be treated until all symptoms are gone and then a little extra. Just like when you take antibiotics for any other infection. They tell you to finish the meds even if you are feeling fine.
You have done remarkably well, noticing quite a bit of recovery in just 3 months. Better to be sure the lyme is gone by treating until all symptoms are gone plus 2 more months.
If you don't do so, you may find it extremely difficult to get back to your present condition the next time you start treatment. This is what has been reported by many, many lyme patients who were in your circumstances and decided to stop treatment.
The end point for lyme treatment comes from the Burrascano Lyme Treatment Guidelines. If you have not read and studied them, I strongly suggest that you do.
You don't know how fortunate you are that you are responding so quickly and effectively to your lyme treatment. You are definitely in the minority for noticing so much improvement in such a short time.
I know it is tough to stay on the pills. Be thankful that they are working for you and stay the course. If you stop treating now, it might take IV medications next time to get you well.
Posts: 9931 | From Maryland | Registered: Dec 2007
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