riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
My migraines are starting to come back, and I'm NOT happy.
I finished treatment for Bartonella two months ago, and have been on Bicillin injections ever since, once a week. I also had to wean down the Topamax I have been successfully using to control the migraines, because it was throwing off my electrolyte levels.
We thought this would be OK, because I hadn't had a migraine in 10 months. And, it seemed to be, until a couple of weeks ago. But I had a really bad respiratory flu that seemed to throw everything out of whack, and now the migraines are back full force.
I've been switched to Zonegran to replace the Topamax, but I'm still ramping up on that, and can't tell yet if it will work. Meantime, I'm wondering if the once a week Bicillin is not strong enough, or whether something else is going on.
Any thoughts? I sent off an email to my LLMD, to see what we can do. I just wonder if anyone found Bicillin helped with migraines, or if I need to add something else in.
These migraines STARTED in the middle of treatment for seronegative Babesia. I never had ANY improvement during months of treatment for Babesia, only continuous worsening, and during that time had some permanent damage to my optic nerves, so am thinking Babesia is not the culprit.
posted
I don't think that 1 shot of bicillin a week is enough for anything. Dr B says 3 to 4 a week for lyme. But bicillin doesn't have much effect on Bart envivo anyways. Do you think that you may still have it?
What do you think got rid of the headaches to begin with, was it Bart Tx? You were treating Bart for a long time weren't you? Was it 10 months? I wouldn't be surprised if you still had it even tho the test was negative. It's such a ***** to get rid of!
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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riversinger
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Member # 4851
posted
Hi Micul,
I agree, once a week is low, but my LLMD, a big name in ILADS, commonly uses this dose, though sometimes he goes up.
I wasn't having the migraines for a long time before I started the Bart treatment, because the Topamax was so effective. Topamax, however, only treats symptoms, not the cause. Usually if you go six months without a headache, they wean you off anyway. We waited longer, because we didn't want to upset things, especially with a bad SPECT. The electroltye problem pushed our hand.
I treated Bartonella for 7 months, and had two negative tests before we stopped treatment. No guarrantees, though, with these infections, so Bartonella is one thing I worry about.
I'm on Bicillin twice a week. I can't make a correlation with migranes because "Thank God" I've never had that Sx. It's weird how they started with Babs Tx for you? I would like to say That I don't think that 1 shot a week is enough tho.
I was hoping that I could only do 1 a week, but I quickly came to the conclusion that it wasn't going to be enough. I think that even the people that have been on them for over a year are still getting 2 or 3 a week.
What else are you taking...Tini or flagyl for cysts I hope? It sounds like your headaches are back just because of stopping the Topamax. Hope it works out for you
Posts: 132 | Registered: Jul 2005
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
I was on Bicillin once a week and noticed after a couple of months the migraines had dramatically decreased, practically to zero.
After about 9 months of weekly shots, went off abx. and relapsed within a couple of months.
Out of all abx treatments so far, felt best overall (energy, etc.) while on weekly Bicillin shots.
riversinger
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Member # 4851
posted
Hmmm..... Tabby, I'm glad to hear the Bicillin worked for you on your migraines. Are you thinking about starting again?
It seems like the consensus, here and on my support group, is that once a week is usually not enough. I'm hoping that my LLMD will either up my dose, or add something like a macrolide or cyst buster, but haven't heard back yet.
Porsche, how could you tell that once a week wasn't enough for you? You ARE lucky not to have the migraines, believe me!
I only went 2 weeks on one shot because I wasn't getting much of a reaction at that dose. I had emailed another lymnetter about her shots because she said in a post a few months before that Her Dr believed that one a week was sufficient. But she wasn't making much progress after 2 months on just one, so she went to two a week.
From all the posts that I have read on bicillin over the last year, it seems pretty clear that one is just not enough. Two may not be enough either, but It's all that I'm willing to do at this point. I wish that one was enough. It would make it so much easier. I don't think that Dr B would be having his patients do 3 a week if he didn't have evidence that it was needed?
So you're just on one bicillin shot a week, and that's it? No other abx?
riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Hi Porsche,
Yep, just the Bicillin. I have a genetic problem with extremely aggressive treatment, so even if my doc would, I could never take as many meds as you. I could add one of them, and possibly do an increase in dose with Bicillin, but not everything at once.
I found I need to tread a fine line between something aggressive enough to make improvement, without tipping me too far into the territory of extreme toxicity.
posted
I did one shot of bicillin a week for six months. Nothing else rxd at the time. I herxed the most on this abx, but also made the most progress by far. I skipped a week or two (maybe three) sometimes to slow down the herxing, progress was not compromised.
Perhaps dosage depends on germ load, size and weight of patient, immune system status? Just guessing.
Once I discontinued the bicillin, there was no relapse, thankfully.
Riversinger, I remember talking to you when I first started the bicillin. The herxes were almost intolerable, you may remember.
Sorry to hear you are having a hard time.
Can you tell us what you took for the babesia that started these migraines? Perhaps there is a clue there.
Posts: 925 | From California | Registered: Sep 2004
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Hi Dolpin Lady!
Yes, I remember talking to you when you were doing Bicillin, though I didn't remember your dose. Glad things have stayed good for you. You went through a lot to get there.
I just heard from my doctor last night, and I am to increase the Bicillin to twice a week, and add Zithromax. We'll see how that does. I wish I thought it has been herxing, but I really don't think so.
As far as what I did for Babesia, I tried Artemesinin, Mepron and Zith, and IV silver. Each one worse than the last. I don't really know if the meds caused the migrianes, or if it was more a matter of not treating the infection that was really causing them.
Very hard to say, as the AEDs have been apparently controlling them all this time. My concern, though, is not to have any more damage to my brain or optic nerve by not treating the correct infection.
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