posted
I was on Mepron for only 2 weeks and had to stop. I have a consult with my LLMD tomorrow but want to be prepared with every bit of info I can get.
I could hardly eat at all and the stomach problem continues though I stopped Mepron 3 days ago. The worst side effect was dizziness, a symptom I didn't have before Mepron. I'm extremely sensitive to medications--a few months ago I lasted exactly one day on antibiotics for H. pylori. Side effects were beyond terrible.
I've been horribly ill for 7 months, unable to work, unable to drive, unable to do anything. I've just finished S's babesia book and he lists horrible side effects on every single babesia medication. He says 30% of people are unable to handle treatment because of medication side effects. Do they just die? Do they stay sick? What on earth can I do?
I know what the recommended treatments are, but I want to know whether anyone gets results from any alternative treatments that don't require drugs? Help!
posted
I hope things go well with your LLMD tomorrow.
I had terrible herxes on some drugs. You will feel worse before you feel better. Herxes can be reduced (and should be, IMO), with proper detox. You and your LLMD have to determine the answer to whether it's a side effect, herx, and how it can be managed, and whether you need more detox.
Good luck!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I've dealt with Lyme since I was first diagnosed over 10 years ago, so I've been doing lots of detox. I think some of what I've been going through with this is herxing, because my symptoms got worse. But I think some of it was side effects of the drug. I've never handled meds well, and it's only gotten worse as I've gotten older. When I was treated for Lyme in '07 I lost 30 pounds. I don't think I could handle that this time around.
Sorry about the mistake of putting in the doctor's name. I know we're not supposed to name doctors, but since he's written a well-known book I thought it would be different. I'll know better next time.
Posts: 143 | From Maryland | Registered: Oct 2006
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Peggy, I agree with what sixgoofykids said.
I have had a very bad case of Babesiosis. For me lack of appetite, dizziness, and nausea (to name a few) are symptoms from the disease.
Good luck with your consult.
Posts: 4681 | Registered: Oct 2000
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Ditto. I got much more dizzy when I started treatment. I also lost weight because I had no appetite. If it was not for the fact I had to eat 23 grams of fat with the Mepron I would have lost a lot more.
I took artemesinin for almost a year without an antimalarial drug and only got worse and worse.
Before I knew I had babesia when the doctors gave me something that also hit babesia (such as plaquenil), I got dizzy or had a headache and blammed it on side effects, quitting the drug.
You might try Malarone to see if that is easier on your stomach.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Maybe you should ask your doctor whether you can go down to lower doses and build back up slowly. I did that with azrithromycin and was able to build up from a half dose to full dose in two weeks.
Posts: 705 | From WA state | Registered: Jul 2011
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posted
You asked about alternative remedies and so far I have found only one that has helped. It is a tincture of Venus Fly Trap. After 12 bottles of Mepron I have been able to stop the stuff so far with no relapsing. Venus Fly Trap has natural Malarial fighting properties. (I don't work for any company making tinctures) I hope maybe this can work for you as well. For me Babesia has been the worst nightmare of my life and I hope you get better soon.
Posts: 63 | From dc | Registered: Sep 2010
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posted
i'm not sure how far the search engine reaches back, but i think there should be information here on artimisinin for babesia.
it is an herbal medicine, which i know of one LLMD who uses it in cases where abx are not tolerable - it would also be what a traditional chinese medicine doc might prescribe for it.
not sure that many LLMD's would prescribe it, if only because they cannot prescribe herbs, but it's worth researching for yourself imo.
it's what worked for me with chronic babesia, after prescribed meds (mepron, zithromax, clinda, quinine and plaquanil) had been attempted and failed.
as with any herbal medicine, you would need a high quality source and proper dosing and treatment support in order for it to work.
artimisinin may have a broader effect as well, perhaps it lowered my "load" of organisms which in turn allowed babesia to be treated.. who knows.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
Thanks, Mo. I've done a lot of research on artemisinin. What dose did you take? A book I just finished named 3 LLMDs who recommend very high doses, 900-1800 mg/day. Dosing depends on body weight. I took it for 2 months with no results, but I was taking only 100 mg 3 times a day. I was using Allergy Research Group.
Peggy
Posts: 143 | From Maryland | Registered: Oct 2006
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unfortunately, i'm highly symptomatic with acute ehrlichiosis with severe head pain, so i can't be too reliable in returning posts or detailed in explaining my protocol, but here's a few basics:
i used Holley Pharma artemisinin, read their research at the time re use of artimisinin in cancer and malaria, as well as vet research on the life cycles of babesia - how it spawns from the liver.
i did riamet twice with amazing effect, only to relapse within three weeks.
because art becomes half as potent in your body by the third day, i chose to pulse it.
100mg, 3x a day, for 4 days on and three days off.
after three days off, it is documented that artemisinin regains all of it's strength in your system, and i believe the time also gives babesia enough time to spawn again, and get it in the bloodstream.
over time, the goal is to lower the load to the point that your immune system can handle it. it took me four months.
i was also doing a tremendous amount of work through nutritional and other means to support my immune system and treat lyme.
i have had no babesia symptoms, after suffering for about 2 years with it badly, i have been free of the disease since 2004.
bpeck had allot of good posts here from which i gleaned allot.
it can be done. and your way may not be this way...but there is a way
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Byron White formulas, A-babs, is what I'm on. It seems to work, weird herxes for sure. Doesn't affect liver like mepron, biaxin and art.
Good luck.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
I too am very sensitive to meds. Spend many years taking doses that LLMD's deemed "normal". Wasn't until I cut way back and took what I could tolerate that improvement came.
Sometimes, taking 1 tsp every other day or once a week is where you start. Overloading an already sensitive person was not the answer for some people.
Posts: 366 | From Louisville KY. | Registered: Nov 2003
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
My youngest son who couldn't take mepron started coartem. My oldest son going to college will switch from mepron to malarone for ease. We all 3 take Zhang's artemesia 2 ten days a month.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
Mo--thanks so much for taking the time to write up that amount of info when you're struggling with Ehrlichia. I really appreciate it.
Jackie51--thanks for the endorsement of BWF. I've done some research about it here but it seemed about 50/50 in terms of results for people who posted about it, so I was discouraged. It's on my list of things to try, but not as a first resort--because of the expense and the number of people who reported they got no results.
ktkdommer--do you recommend the Zhang's; do you think it's working? It's hard to tell because you also mention medications. I've read several reports here about Zhang's but all mention the high expense, and several say that even after several months they saw no results.
Thanks so much to all. Since I had to stop the Mepron I seem to be on Lymenet most of the time when I'm not sleeping.
Peggy
Posts: 143 | From Maryland | Registered: Oct 2006
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