This is topic Question about Borrelia relapses: Who, What, and How. in forum Medical Questions at LymeNet Flash.

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Posted by James1979 (Member # 31926) on :
My dearly beloved friends,
Who here has treated with abx for at least 2 months past the no-symptoms mark, yet still had a Borrelia relapse? I'm interested in hearing personal examples. If you so desire, you can share your co-infection examples also, but I'm mostly interested in hearing about Borrelia.

Here are the questions I am interested in, if you feel kind enough to share:
1) Were you 100% symptom-free at the time of stopping abx?

2) How long did it take before your symptoms started coming back?

3) What do you think was the main factor that contributed to your relapse? (examples: co-infections, didn't treat long enough, heavy metal toxicity, "I don't know", etc).

Thanks to everyone who responds.
Posted by CherylSue (Member # 13077) on :
Hey, I relapsed even taking RX meds and slid back from 90 to 40%. After 7 months of a relapse, I switched LLMD's again, and am now on additional meds. Slowly, I'm getting better.

BTW, we used to share the same LLMD. That doctor was good, but recently some posters suggested another one to me in Illinois, and I think this one is adding something extra.

Hope you are finding success. Everyone is different.
Posted by shazdancer (Member # 1436) on :
1) I was initially treated in 2001 by mainstream docs. I was treated with doxycycline for 2 months, and when that didn't work, with Ceftin for an additional month. Never tested for coinfections. Gained back about 75% of original health and was told the classic "you'll continue to get better over the next year."


2) I never quite regained 100% health, but after a year I began to slowly slip. In 2002, I had head pressure and mild depression. In 2003, I was also noticing pain in the soles of my feet.

In 2004, I majorly relapsed with more symptoms than I had had before, including tinnitus/hearing loss, peripheral neuropathy, pain that prevented me from walking more than a few steps, sensitivities, migraines, emotional lability, and fevers/night sweats. (And since I had moved to a low-risk area and rarely went out, it was most likely a relapse, not a re-infection.)

This time, I worked with an ILADS doc to treat Lyme and Babesia. Unfortunately, I was damaged by the relapse: permanent mild-moderate hearing loss, peripheral neuropathy, fibromyalgia-like symptoms. But my brain has come back to where I could ace grad school and successfully begin a new and challenging career. [Smile]

3) I think I wasn't treated long enough initially, was never tested or treated for Babesia, and was misdiagnosed and wrongly treated with steroids (which probably exacerbated things).

Incidentally, when my son became ill, I had him treated immediately by an ILADS physician, and though it was rough going, he has no lingering effects two years later. Woo-hoo!

Posted by James1979 (Member # 31926) on :
Thanks a lot for the replies, ladies!

Does anyone else have stories about when they thought they were 100%, and treated for 2 months past no-symptoms, but then they relapsed after stopping abx?

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