posted
Hello All, Help Please!! I took Doxy for three months. Got MUCH worse, but never got better. Took Artemisin (sp?) for four months. Took Zithromax and Mepron for nine months. Got to feeling much better, fall from well, but great improvement. Then took Biacin and Fagyl for four months. Again continued improvement. Once stopping meds started getting worse, downhill a lot! Have been taking Cipro for almost a month. No change with it. No better but continuing to get worse. Afraid I'll lose all the progress I made this past year. Dr just says to stop Cipro for 5 days and then start again. I'll do it, but don't know what good it will do. I'm afraid! I couldn't handle getting so much worse again. After being torturous ill for SO LONG. Take care, Beth
Posts: 72 | From California | Registered: Mar 2004
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
This is just my opinion as someone who has been living / trying to cope with lyme and treatment for a lilttle while.
My personal theory is -
If I start a new abx and I get progressively worse the abx is not working....
and I need a new one.
For me herxes aren't a progressive worse kind of thing... their nature is different.
If you think this is also the case with you, I would ask your dr. to change your abx...
explain to him that you really feel this is NOT a herx and you would like to change meds.
(My best guess is that the 5 days off cipro is because he is trying to see if it is a herx)
There are a ton of abx to choose from... did you plateau on the others?
If they were still working maybe you could ask to go back one of those combos that helped prevously.
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hi Beth,
Just from scanning the list of your medications and when you felt better, it looks like you felt your best when you were on Babesia treatment, more so than on a couple of the antibiotics that target Lyme/Ehrlichia or Bartonella or whatever.
So do you think that maybe there is another coinfection that hasn't been diagnosed? Or maybe the Babesia wasn't quite wiped out and you feel worse when you go off Babesia treatment?
Maybe you can sit with your Lyme doctor, and chart which medications you felt better on - and which diseases those were for - and which medications you didn't feel better on and which those diseases were for.
I don't know if it helps, I just know with all the illnesses I've had, I have to be my own detective and figure out what makes me better and what makes me worse.
Take care, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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I did well with the Mepron and Zithromax. Took it for nine months and had my 1st and now greatest progress!! I told my DR that I was afraid of going off them, but he assured me I had taken it long enough. Then we did the Flagyl and Biacin. Once stopping the 1st two I did start to regress just a little during the time it took me to get the other two covered/paid for. Once I started the two knew ones I once again make great progress. After so many years of only getting worse year after year, I was thrilled. Since stopping the 2nd two I have regressed a lot. The Cipro has not effected me at all. I asked the Dr and he said to stop the Cipro for 5 days and then resume. Nothing again. I'm so concerned about finding a way to retain what progressed I have made.
Thanks so much for your responses!!!
Take care, Beth
Posts: 72 | From California | Registered: Mar 2004
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Hi Bethanie!
So glad to hear that you have had so much improvement!!
I'm with Azure Wish. It sounds like maybe Cipro isn't the treatment you need. Most likley your doctor is targeting Bartonells with it. Possibly you don't have Bartonella, or maybe the Cipro isn't effective in your case. Hard to say.
But Cipro is not effective for Lyme. And it sounds like you have Lyme, since you did well on the Biaxin/Flagyl combo. It can be used for Babesia, at least according to some doctors, but is more likely to be hitting the Lyme.
Is there a reason you stopped taking Biaxin/Flagyl? Seems you were doing well on it. If it was still helping, there isn't necessarily a reason to stop. There are also other possible meds to try, though cost may be an issue. It sounds like you haven't tried any Cephlasporins, such as Ceftin or Omnicef, and there is also Bicillin injections as an option.
There is no reason to let things go downhill. It is possible that you are herxing from the Cipro, but if you were improving with the other treatment, why change? A month is a pretty good trial, and in my experience, even though the herxes can be fierce with Bartonella, you should also see some definite improvement as well.
posted
Hi Riversinger, Thanks for your response. Sorry to take so long to reply myself I have been feeling horrible. He did try to treat the Lyme at first, but then we figured out I had Babesia. So all the meds I mentioned have been to treat that. Except that a couple months ago he thought I might have one of the other co-infections. Cipro, in my opinion, has proven I don't. I REALLY wanted to stay on both combos. After 9 months of one and then 45 days of the other, dr insisted I had taken enough and it was time to stop. I had not plateaud, I had increasingly become better and better. Now I've gotten worse for the past 3 months. Losing a lot of the ground I made last year. So scarey! Take care, Beth
Posts: 72 | From California | Registered: Mar 2004
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It might help if you gave us a brief list of your major symptoms. Which ones improved and which ones came back or got worse with the changes in meds. That is the way I try to figure out if the meds are doing hubby any good.
I am also inclined to believe that you could still have Babesia.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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liz28
Unregistered
posted
Hi, I'm actually not sure what you are treating, either. But if you are in CA, you might want to contact Dr. H for a consult on babesia, if that's what you have.
I've done best on the Dr. B protocol of cephalosporin/macrolide/cyst buster for Lyme, and a babesia treatment modeled on the treatment for plasmodium vivax, or relapsing malaria. But I still haven't tried all the options yet. The ones I read about the most are:
chloroquine/primaquine/artemisinin (the official treatment for p. vivax malaria, but also prescribed for much shorter time periods than babesia patients usually need)
quinine/doxycycline/primaquine
mepron/macrolide/primaquine/artemisinin
There's no guarantees with any of these, and they all have side effects. Flagyl is a terrific Lyme drug, but it has two problems: it can cause side effects worse than the disease, such as cancer and nerve damage, when taken over long time periods, and it can suppress the co-infections without curing them.
Take a gander through Lymenet and note how many people relapse the moment they go off mepron. I'm honestly not sure whether this is because of mepron's ability to generate drug resistance, or whether it isn't the best possible drug for babesia, or whether babesia has adapted to antibiotics by developing a dormant form, which is common with malaria.
There are trials in the works of a new drug combination for malaria, chloroquine/primaquine. Apparently, malaria figured out a way to neutralize the effect of chloroquine, which was once the safest and most powerful malaria drug on the market, but primaquine makes the drug effective again:
Right now, I'm taking mepron, primaquine, artemisinin and ketek for babesia, and ketek with omnicef as Lyme maintenance (and at least four types of daily liver support).
The babesia is a million times better, but it's definitely still around, in part because I've developed drug resistance by taking mepron for too long. If it's still active in two months, I will explore the other drug combinations listed above. The next step would probably be to go back and do IV rocephin for the Lyme, without co-infections getting in the way.
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