Topic: Help--LLMD rx'd Mepron with nothing to else to prevent resistance! What to do?
Rumigirl
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posted
I finally got my LLMD to rx Babesia treatment again. However, since I can't tolerate zithromax, due to getting bad tinnitus from it, the PA rx'd Mepron with NOTHING to keep it from being resistant to the Mepron!!! I asked for Biaxin or Bactrim DS with it for this reason. (I don't know if I'd have the same problem with it, but I was willing to try).
But she said that they felt it was fine to take it without anything else, and that it didn't create resistance. She said, every LLMD does it differently. But I have NEVER heard anyone else say that, and I don't believe it.
I know Dr. H is adamant about not creating resistance by either taking meds in too low a dose or without other meds to keep from creating resistance.
I didn't totally realize until afterwards that I came away without anything to oppose/augment the Mepron. I asked about doing Artemisinin, and she said that was ok (or cryptolepsis or sida acuta, which she hadn't heard of).
Now I don't know what to do---the last thing I want to do is create resistance ever after to Mepron! But I really need Babs treatment! And I'm not due to go back for 2 months.
Plus, I had TWO visits recently, because I went back 2 weeks after my first visit to beg for Lyme treatment via IV, which they wouldn't give me in the previous visit (not any Lyme treatment at all!!).
What should I do?? I'm so fed up with trying so hard to get the drs to give me what I need and coming up short. I know the PA is also concerned that I am on so many meds. In terms of tx, I have been ramping up slowly on rifampin and doxy, will add rocephin, and Mepron (except for my worries about taking it without a macrolide). I'm also on various other meds to help keep me alive and functioning a little.
I did once before take Mepron with just Artemisinin that they rx'd, but I'm concerned. I want to get over Babs, not just dribble some Mepron on it. This is a well-known LLMD, but he is not thorough enough at all. I just don't have a lot of choices in who to go to now.
[ 04-26-2012, 10:55 PM: Message edited by: Rumigirl ]
Posts: 3792 | From around | Registered: Mar 2008
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posted
I don't have anything to add about taking Mepron without Zith, other than what you already know. It's always taken with Zith or something else to prevent resistance. I've been on Mepron/Zith going on two and a half years. Recently, my hearing has been compromised, and my doc did not want me off Zith, for that reason.
Also, Rifampin reduces the concentration and efficacy of Mepron. It's contra-indicated to use them together. I used them together for a month (could only handle that time on Rifampin), but that was after two years on Mepron, and we weren't as concerned about the absorption of Mepron.
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Rumigirl
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In the worry about them rx'ing the Mepron with nothing else, I forgot about rifampin interfering with Mepron!
It's ridiculous: the LLMD two visits ago did muscle testing on me and decided from that that Bartonella was the main infection that was up, along with Babesia, and he thought that Lyme wasn't. So he wanted to put me on rifampin only (and nothing else, as I have had tendon damage twice from quinolones).
I was really upset, as I had been off treatment for nearly a year, and have been just barely hanging in there with daily severe migraines for now 8 months, plus very intense pain everywhere. I knew that Lyme and babs treatment were what I desperately needed. His muscle testing was quite inaccurate on the Lyme (I have done and taught muscle testing for decades as a practitioner, so I know. He didn't press down on my arm on what turned out to be Lyme).
I begged for doxy for my + Anaplasma, but he wouldn't give me anything for Lyme--just gave me low level doxy for Anaplasma. I made a second appointment with his PA to beg for rocephin and more comprehensive babs tx (at great expense). No go.
But now I have the rocephin rx'd finally, but Mepron with rifampin and nothing else!! I feel like I'm completely on my own here. I want to go to another LLMD, but don't have much choice. And I just spent $1,150 on 3 visits to this LLMD's office! Which should be reimbursed, but never is.
I don't know what to do about the Mepron with nothing else! I am holding off for now on that.
Posts: 3792 | From around | Registered: Mar 2008
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posted
Looks like you've been 'round this rodeo a few times...
I don't understand why your supposed LLMD is adverse to prescribing medications under traditional ILADS guidelines? My thought would be to find a different doctor. You've spent a lot of money, and you still don't have a complete well thought out plan.
Since you have expertise with muscle testing, I would definitely decide for yourself, what pathogen to tackle first. Have someone muscle test you, or go to someone who does electrodermal testing.
Then I would call or e-mail your LLMD and request that Zith be added to Mepron. It's also used for lyme at 500 to 600 mg/day. My LLMD not only has me on Mepron/Zith , but also Tindamax. You could always add GSE instead for a cyst buster. Later on you could consider adding something else for lyme, like Ceftin.
Another thought is what dosage of mepron was prescribed? Your LLMD may start out on one tsp. bid, but you need to work up to two tsp. bid to be effective. Hopefully you have been covered for that too.
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Rumigirl
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I can't take zith, because I got screamingly loud tinnitus from it that never went away. But I wanted to try Biaxin instead, even though it has an ototoxic profile, too.
He has several times put me on a specific abx without anything to prevent resistance. He doesn't believe that it's a problem. But I think that's crazy. No one else advocates that.
They put me on 1 tsp Mepron three times a day last Friday. But I don't want to do it without something to prevent resistance!
They did that once before with me with just Artemisisin with it. This time they didn't even suggest that!! I'm so fed up with this. I've worked way too hard and spent way too much money to put up with this. This LLMD seems to care and is compassionate, but doesn't care enough to be thorough!!
Oh, and I've never been put on a cyst buster in all my years of on and off treatment with top LLMD's, in spite of asking for it lots.
Posts: 3792 | From around | Registered: Mar 2008
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posted
I would take Arteminisin, Nutramedix Quina, or Crypolepsis, or two of the three. It's my understand that herbs tend to help prevent resistance but I don't know if that's accurate.
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Rumigirl
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Yes, Biaxin is what I asked for and didn't get!! This LLMD is really bad about giving ONE abx for a pathogen, especially when I've had a reaction to one of the usual ones given, like zithromax.
Maybe if I take two of the herbs with the Mepron? I'm just not sure if that's adequate. Thank you.
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posted
Rifammpin is prescribed with Mepron all the time. If there are any issues with Babesia rearing up, they increase the Mepron. This is used by many Ilads doctors.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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Rumigirl
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That's good. But ILADS drs don't usually rx Mepron without anything like zithromax (which I can't take, unless I just try it again) or Biaxin. Any other feedback, suggestions? Thank you!
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Rumigirl
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Up for one last try. I have an email out to my LLMD's office, but I don't think that they will do anything differently until the next visit in 2 months. In the meantime, I am holding off on the Mepron due to this.
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Tracy9
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My current LLD prescribed Malarone without Zith and I asked for it. I also get bad tinnitius from Zith so I asked for Biaxin and he gave it to me. He has me on an oral along with Rocephin anyway, and it's been over six months so I thought it was time to change that one up anyway. He agreed. He is very easy going and responds well to patient input. But he did not originally put me on anything to go with the Malarone.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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He did, however, immediately understand about adding the Biaxin or Zith to the Malarone.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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nonna05
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Looking for all the cyst buster's///????
It's amazing what you have to find out ,to stay alive...It would be nice to do more than that.
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Have you considered ordering the meds you want on line?
I would spend the next 2 months getting myself another doctor and would not go back to this doctor. I would make this a priority. You are throwing good money after bad.
Here is a thread that lists some websites for meds:
sammy
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Member # 13952
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So right now you are supposed to be taking Doxy, Rifampin, Rocephin, and Mepron? Right?
Maybe the Doxy will help prevent resistance, it was used to treat Malaria and can be used at times to prevent Malaria infections.
I would still add an herb like cryptolepis because you really want to get rid of the Babesia.
Adding Biaxin on top of all those other antibiotics might be a bit too much to handle. (Unless of course you are crazy like me and just want to jump right into the fire and run full speed ahead...)
Rumigirl
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Member # 15091
posted
sammy, I think that is probably why they didn't rx the Bactrim DS or Biaxin, that it would be too much. But by the same token, they don't even seem to think that it's a problem to take Mepron by itself or just with an herb. They rx'd it that way for me before when I was on fewer tx meds (but still plenty of meds period, which the PA is concerned about).
I'm not as concerned about the Bart right now myself. But the LLMD is. Sure, I do need to tx it, and maybe it is more of a factor than I have been appreciating. But my sx scream babs, and Bb, and the tx of those two always helped me tons. And I am just coming out of a crisis of daily migraines and pain that kept me up all night long for 8 months straight!! The LLMD and PA didin't seem to get it!! (How hard is that to understand??).
Yes, TF, I did think about ordering the meds without an rx, but where that is reliable---from a veternarian website? I don't want to order them from a website that I can't trust. Trusted Canadian websites require an rx. Sammy does have a point about maybe too many meds though.
And, yes, I DO need another LLMD. The problem is that there aren't a lot of good choices. I have an appointment for one LLMD, but not until October!! I could press them for a cancellation (I've already been on the cancellation list for several months). There are no easy answers! Other than to go back to my rife machines, which I may do. But I hate to add too many things to the mix, because then it's hard to know what is causing what when I have reactions/herxes.
Thanks, guys!
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