A while ago I posted that the hubby was having what appeared to be a major babesia relapse. This is after a year and a bit of bicillin, 10 months of mepron/zith/art, and 4 months of bartonella tx.

He'd been off the mepron/zith/art for 2 months almost to the day. He'd been doing great -- exercising daily, cheerful, hopeful, fixing things around the house that had been unfixed for years.

I still think the relapse may have started with the flu. The hubby thinks it was all babs. He ran fevers of about 100F for 4 days, had a sore throat, a mild cough, ached all over, very weak. When this went into the second week, and he was having lots of rage and depression, headache, muscle ache, and heavy sweats every night from 3-5 am (and some during the day) we both thought "babesia".

He tried one course of Riamet. I think this may have worked better if he'd started on it the instant the babs restarted; as it was, it might have helped marginally but the single course wasn't enough and we didn't have more.

He started back on Mepron/ketek, and within 6 days many of the sx had resolved. He's now mostly dealing with fatigue and headache. Sweats are completely gone, mood is infitely better, cognitive function is back.

I did ask the doc about the clindamycin/quinine tx, but he said given the abx we've already had and some other factors, he wants to re-treat with mepron/zith for now, and will be changing abx in about 6 weeks (dunno what; he's looking into a new combo and a drug that's just now on the market -- the new tinidazole).

The doc has seen several such relapses. The bad news is that they occur. The good news is that within 2 weeks on Mepron/ketek, the hubby was doing quite well, and was at a point that it took him 5 months to get to the first time around.

So we're disappointed but hopeful.

I'm editing to add that the mepron/zith/art were apparently very successful in my case -- I've been off babs tx for 6 mo, and not even a whiff of a relapse. My treatment has been similar but not identical to the hubby's. I'm doing quite well now, on the home stretch, but am doing a retreatment for bart (I never made it through my original bart tx). We've had LD/Co for almost 2 decades.

I want to warn anyone who goes through this, and their significant other/caretaker/family: The relapse kicked of a very scary depression that was partly the babs itself, and partly the despair of having to go through this again. Hard on me, hard on him. Although the word "hard" covers it the way "tall" describes Mt. Everest.

I hope we find a way to deal with this other than mepron -- the expense is horrific -- but life is livable again.

That sense of hope, which sometimes feels absurd, has been the most necessary and most fragile part of our long, battering trek to recovery. It's easier for me to sustain, because I'm a Celt and a fantasist and connect only loosely with the real world. It's harder for the hubby, who is a realist and a scientist and a Westerner, all of which are very fine traits on a practical plane but of no use at all when you want to keep Tinkerbell's light from going out.

Clap, everybody.

Wow, I am so pleased that you are feeling better, and that hubby has improved!

I can sure relate to that awful sinking feeling that takes over when a relapse is beginning. I do think it is the gift of hope that fades at that time, and it is so difficult to keep up the confidence in treatment when it doesn't seem to be working.

Thank goodness that hubby's recovery period this time around was short in comparison. He is lucky to have you hold his faith when it slips through his fingers. Keep up the good work!

Much love,
Melanie

I too had major depression and rage due to relapse of symptoms after 4 year remission. It is very hard on loved ones. I feel for everyone in our lives!

Thank you for bringing us up to speed in your without a doubt fascinating life.

So happy, you and your hubby are better.

I been on mepron-zithro-art then mepron-art-ketek-lev-bici for a total of 9 months and my babs symptoms are gone for the exception of the night sweats and of course the full blast headache on my cycle (maybe this is caused by lyme- don't know). I would like to let you know that when I started the lev my night sweats stoped for 2 weeks and then they came back with the same intensity. Later on when I add the Ketek the night sweats turned into night drips for 4 weeks and is where I am right now. The ketek also gave me horrid headaches, full blast herxes for two weeks and I am having yeast problems.

I am wondering if the night sweats can be caused by something else?

I really know what you mean by:
"That sense of hope, which sometimes feels absurd, has been the most necessary and most fragile part of our long, battering trek to recovery." I am just spechless after reading this note, can't describe any better what it takes to regain our health.

How do you get the riamet?

Lots of hugs,
Lymster

Hang in there Tinkerbell! We all love you!!

Keep up the good work! Good to see you!!!

------------------
If you get the choice to sit it out or dance...

Glad to know it is working for your husband.

I hate bugs.

knowlege is power, but with Lyme ignorance can also be bliss.

babesia is usually not known to be a relapsing organism. hope this was not a new bite.

make sure you got your seasonal ground spraying, etc.

be well....

Even though this book makes for very heavy, non-earthy reading, you might want to check it out. It's called "Man's Search for Meaning" by Viktor Frankl, which is the handbook for spirituality in overwhelming life circumstances. Plus, it's only 200 pages long, and you can get it used for just a couple of bucks. I clung to it for the first two years I had Lyme, and don't know how I would have survived without it.

Glad you mentioned the pricey side of mepron. I've been on it seven months, and am resigned to the possibility that I may always have monthly babesia flares. Would it be possible for your husband to just take mepron once a month, when he expects a flare? They aren't pleasant, but they are predictable. I've found that just four days of well-timed, high-dose mepron with ketek can squelch the babs.

[This message has been edited by liz28 (edited 27 May 2005).]