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Need input on new protocol (incl. question about Mepron)

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Posted 8/11/2013 3:43 PM (GMT -5)
Hello all,

I had my follow-up appointment with my LLMD and would really appreciate your input on my new protocol.

I just completed my first round of treatment (Septra, Omnicef, Minocin, and Flagyl; M/W/F with 2 weeks on, 1 week off, with Flagyl Th and F of the 2nd week), and the doctor gave me my new protocol for this next round of treatment, which will be 4 weeks at a time (2 weeks on, 2 weeks "off" - see below) for 4 rounds before I return for my next appointment:

Omnicef - 600 mg 2x/day
Septra - 800/160 2x/day
Mepron - 2 tsp 2x/day
Artemisinin - 800 mg 2x/day
Flagyl - still Th and Fri of Week 2
Coartem - week 3 (still MWF) - 3 tabs 2x/day

Any thoughts at all about the structure of this new protocol? They said that it is a bit more intense, but I felt like the last round was intense! It seems that they are really going after any babesia, which I am glad to see even though I am afraid of the unknown when starting this next round. I need to learn a lot more about mepron, artemisinin and coartem before I start next Monday (8/19).

Also, I am quite stressed out about the cost of Mepron -- $700 after insurance! One bottle will last for 21 treatment days, but I'll need 24 days...seriously?? (I'm not going to spend $700 more for 3 days of treatment, but who knows I may need to be on this for longer than I think.) The pharmacist said that the capsule form of mepron is much cheaper, but my doctor's office said that the capsules are more potent...would really appreciate any comments/advice on this. I plan to call the doctor's office tomorrow to ask if I really need the suspension or if I can do the caps after all...

Thanks so much for your input.
Posted 8/11/2013 9:19 PM (GMT -5)
Yelloworange, from the quick search that I did on the internet, I saw that there is no generic version of Mepron so I imagine that may be one reason why it is so expensive.

Canadadrugs.com says that "This drug (Mepron) is quite efficient for people who are intolerant towards trimethoprim-sulfamethoxazole (Septra). I am curious why the doctor would put you on Mepron when it may be similar to Septra.
Posted 8/12/2013 5:39 AM (GMT -5)
Mepron is completely different than Septra. At 2 tsp twice a day, one bottle will last 10.5 days. You will need 3 bottles to go 24 days and that might have to take it longer than that. Some folks are having to do many months.
Posted 8/12/2013 7:37 AM (GMT -5)
Hi,

I was started on Malarone for Babesia with my first lyme doctor. I was on pretty large doses for 6 months but I kept getting worse.

My doctor now has me on the Mepron at 750mg 2x daily and I'm improving but it is hard to tell when I am on multiple meds.

How did you get up to 800mg 2x on the artemisimin? I couldn't get above 600mg and had terrible brain fog.

Oh yeah, I have been on the Mepron many months but no side effects.

Thanks,

Anna

Posted 8/12/2013 9:16 AM (GMT -5)
Anna, what dose of Malarone were you on? I am taking Malarone 250/100 1 tab twice daily along with 300mg of clindamycin and 1 tab of Interfase Plus (cyst buster) twice daily. I, too, have not seen improvement in over 4 months being on this cocktail. I know my LLMD works up slowly with meds.

Patty
Posted 8/12/2013 10:10 PM (GMT -5)
Thank you all for your replies. Georgia, the bottle of Mepron is 420mL (I think they make a smaller bottle too, not sure) so with only taking it 6x/week (twice each on MWF), I need it for 24 days -- 4 tsp X 24 days = 96 tsp or 473mL...so I definitely need more than one bottle just for this round. The very good news is that I called my prescription benefits hotline and asked about the mail pharmacy pricing...apparently I can get the Mepron for a fraction of the retail price if I get it via mail. Such a huge relief. Hopefully this is not too good to be true...but that's my bartonella worrying coming through!

Anna, I thought that that dose of artmesinin seemed high, but sure enough that's what they said...good to know that for you the brain fog was an issue. That is definitely a symptom for me right now, so I hope it doesn't get much worse. When they gave me this new protocol they said they were "opening things up a bit," but that I could call and we could adjust things as needed.

Does anyone know if resveratrol is okay to take while on this protocol? I want to fight the quinolinic acid. I'm supposed to stop taking alpha lipoic acid but it seems like resveratrol would be okay.

Thanks again

Post Edited (yelloworange) : 8/12/2013 9:23:06 PM (GMT-6)

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