posted
Excuse any repitition, I've posted about a similar question in the past. My healthcare situation is a convoluted mess at this point, so I'm hoping some of you can offer your opinions, while I'm making some choices.
I'm being treated (for babs) by a very non-LL NP, who somewhat reluctantly agreed to a phone consult with an LLMD (with whom I have an appt in 5 weeks). Per LLMD's instructions, my NP Rx'd a heavy duty regimen for 5 days (Mepron, Ketek, Flagyl, Mino, and another, whose name escapes me at this moment). After the initial 5 days, my NP instructed me to continue only the Mepron.
Since monotherapy with Mepron is unusual, I've verified this with my NP several times (even referencing Dr B's guidelines directly), and NP asserts that Mepron alone is all that is needed, as I took so many other meds initially (with 3 mos of doxy prior). This is despite disagreement from another non-LLMD in her office.
I've been on Mepron alone, with misgivings, for a month. Has anyone else been Rx'd Mepron alone? I am concerned about resistance.
Would stopping the Mepron until I can verify with the LLMD in 5 weeks create more chance of developing resistance?
On top of that, this particular NP tells me that I can't have Lyme, because of a negative Quest WB, and in spite of a positive PCR! (I thought a positive PCR was significant?)
I've already switched NPs, but the LLMD is out on vacation now, so until the new NP can verify treatment with LLMD in a few weeks, I need to make the choice to continue or discontinue the Mepron.
posted
sorry you are going through this. what a bummer. sounds really confusing. if you truly have babesia then like Heather said the artemisinin with Mepron would be good.
sounds like you are uncomfortable with your current LLMD situation and need to get treated by someone you trust.
If you do not like this NP then by all means get yourself to someone you feel you can trust. It makes a big difference in how you feel about treatment.
good luck and hoping it untangles itself soon for you! -pip
Posts: 446 | From California | Registered: Jul 2004
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
It's my understanding that mepron is normally given with abx [zithromax] so the babs does not build tolerance against the mepron. Artemisinin is also very good when used in conjunction.
Normally, mepron is pulsed, three weeks on, and one week off.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Mepron is for treating babs, a parasite. Our llmd says it is important to take the whole month without missing a dose. Babs reproduce faster and treatment will be compromised if you are not faithful taking it. It is my understanding that the abx was for lyme/bart and other bacteria. Mepron can be helpful in reducing the lyme load too.
We have always taken mepron and abx together, treating two different creatures was my understanding.
A positive PCR means you have the DNA for lyme in your blood. You have to have lyme. Our bodies don't make antiboodies (WB) all the time. The positive bands on a WB are more significant than the number.
I tested positive on ELISA and PCR but only the bands specific to lyme on a WB. I have lyme.
posted
Sus, Is Mepron in pill form or IV? It's pretty expensive, right?? I am waiting for results from babesia test...convinced I have it in addition to the lyme and HME. Thanks, Betsy
Posts: 107 | From VA | Registered: Mar 2005
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posted
Sus, you could add artemisinin without the NP, because of the resistance danger. If you have already shown the NP Dr. B's guidelines, with no effect, then it looks like you are on your own until you get to the LLMD.
(Note to Betsy: mepron not done IV, usually as liquid or pill. The pill is a lower dose of mepron, and is called malarone.)
[This message has been edited by lou (edited 18 July 2005).]
Posts: 8430 | From Not available | Registered: Oct 2000
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Oh what a conundrum! I was there, but not exactly where you are. I had to stop taking mepron/zith due to extremem herx after exactly 4 weeks. Stopped completely. I can not restart for 3 months. I am in month 2. I may have to push it back even further b/c of surgery for endometriosis.
I read A LOT about resistance. Two LLMDs told me I could stop completely b/c I hadnt been treating for very long.
Atovaquone (Mepron) plus azithromycin (Zithromax) -- Preferred regimens for severe babesiosis. Atovaquone should not be used alone. Resistance may develop; always use in conjunction with another anti-Babesia agent, preferably azithromycin.
I wouldnt risk it. But I am NOT a doc. Some docs will do a phone consult and maybe help you with this terrible decision. I know of one that might do this. It will cost $150 buks for 1/2 hour, but it was the second opinion I needed to know that I wasnt doing long term damage. E-mail me if this is something you want to do.
posted
Sus, i second what trails and the others have said. You need zithromax with mepron and stopping would not be a good idea due to the resistance thing.
There is a free drug program for Mepron from the pharmaceutical company that makes it. You can e-mail me to get the info about this.
Posts: 446 | From California | Registered: Jul 2004
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liz28
Unregistered
posted
I take ketek, the latest generation of zithromax, with high doses of mepron and artemisinin. I'd read on Lymenet that even when you are on the best medication for babs, it takes time to get rid of, and so far that has proved true. I've been on the abx for nine months, and it works perfectly. Unfortunately, I've had babs for so long that there are many generations to kill off, and I have a relapse every month.
So far, there have not been many posts on Lymenet on just how long your are supposed to take these abx, but I'm figuring at least 1-1 1/2 years.
posted
Dr. J told me last week that my daughter will need to be on mepron/zith for 3 months without interuption for babesia before he would even CONSIDER a possiblility of taking her off it. pc Posts: 687 | From PA | Registered: Oct 2004
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
Sus:
You can take Mepron alone, without a macrolide. The studies that show Mepron resistance were done mostly on animals. The one human study that I know of had very few patients in it. However, the ILADS Guidelines suggests taking a macrolide with Mepron, based on the few studies where 20% of those using Mepron alone developed resistance. This is still being studied and is not 100% conclusive that a macrolide is necessary.
I take Mepron without a Macrolide because I have a terrible time with oral abx. I know the Mepron is working (sans macrolide) because I do get a herxheimer reaction from it. I did take Mepron with Zithromax for many, many months. I went off both in April (due to severe gastrointestinal problems from Zith) and the Babs came back in June.
I now take Mepron and Bicillin. I do not take any breaks on the Mepron. My MD is LL and has read all the papers on Mepron. He believes that it can work alone for some patients but, he does not think pulsing it is a good idea. That is just one MD's opinion. There are many opinions about this.
Hang in there. Find a LL Dr., if only just for a second opinion. I recently got a second (well, a fourth) opinion from a supposed Lyme expert (LLMD) who told me I don't have Lyme or Babesiosis, despite my positive blood tests and clinical symptoms. Go figure. These MDs, LL or not, are not omnipotent and are not always on the same page about diagnosis and treatment. I am a tad concerned that an LLMD was able to suggest such a strong Rx combo via a phone consult with your NP, without seeing or speaking to you.
Hope your appointment offers some answers to your concerns.
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