Babesia Infection

[louris]

My MD has diagnosed me as being infected with babesia.  He wants me to start on azithromycin and Mepron.  The Mepron is hella expensive.  I don't have pharmacy benefits.  Is there an alternative that I can discuss with him?  Thank you.

[Lizz]

Louris, just curious, did you test positive for babs or was it by exam/clinical impression?

[Maz]

[user=290]louris[/user] wrote:

He wants me to start on azithromycin and Mepron.  The Mepron is hella expensive.  I don't have pharmacy benefits.  Is there an alternative that I can discuss with him? 

Hi Louris,

Flagyl or tinidazole are both anti-protozoal meds used for babesia, as well as bactrim or septra or plaquenil. Like malaria, babesia is a protozoan infection and plaquenil was originally designed for malaria, but found to help those with rheumatic diseases, too (as do the others, interestingly!). Zith can also be taken concomitantly with the above, although not sure of the septra or bactrim with zith…you'd have to check that. My LLMD prefers tinidazole to flagyl, as it's been shown safer in mice studies (linked with some forms of cancer in animal studies).

Interestingly, the zith, doxy or mino and flagyl or tinidazole combo is very similar to the chlamydia pneumoniae Wheldon protocols (see here) that Dr S in GA/TN uses. When I showed my LLMD Dr S's protocol, he remarked that it was also very similar to a Lyme protocol (doses vary).

http://www.cpnhelp.org/treatment_protocols

Tinidazole is sometimes better tolerated than flagyl, although it varies between individuals. I've talked to people who had more tolerable herxing on Tinidazole than Flagyl and vice-versa. Parisa's hubby did great on IV flagyl, for instance, and one of our RBF volunteers is doing better on Tinidazole.

A lot of this is trial and error based on inidividual tolerance, but if you don't do well on one anti-babesia med, there are some other excellent alternatives, thankfully. So no worries. 😉 Here is another  LLMD's babesia recommendations:

http://www.lymebook.com/antibiotic-treatment-for-babesia-bartonella-ehrlichia-co-infections

All the best, Louris, figuring this out with your LLMD. You're not alone with the cost of Mepron…some ins carriers cover it and others don't, so it can be very pricey. Also, Mepron (aka “liquid gold”) can have side-effects, which some put down to herxing, but the depression associated with it, I personally question as more of a drug-side-effect.  Here's a couple threads on the Mepron depression topic on LymeNet:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/54783?  

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/81841

Peace, Maz

PS Louris, this was rather timely. I was just kindly sent this link from another Lymie re: Mepron and the patent running out on this drug. What this means is that cheaper generics may soon be available on all the drugs listed at this link. Of course, the question of generic efficacy may come into questions, but nevertheless, there may soon be a cheaper Mepron generic option:

http://www.modernmedicine.com/modernmedicine/Modern+Medicine+Now/Patents-soon-to-expire-for-many-brand-name-drugs/ArticleStandard/Article/detail/617015

[louris]

Lizz,

A combination of both.  He based his conclusion on my history of symptoms, his evaluation, and the IGeneX test results.

Maz,

Thanks much.  I posed the question, regarding if there were any alternatives to Mepron, this morning (this doctor takes a time-limited number of patient calls in the morning) and he was a bit curt about it.  That seemed a bit out of character for this doctor (even though I've only worked with him for a short time).  Therefore, we didn't push the subject.  He really seems to favor this medication (and no, I don't think he is cozying up to GSK).  A little bit the problem with Bactrim and Septra is that I might have a sulfa-drug allergy.  There's a longer story to this, but it harks back to my days of UC and sufasalzine and what really may not be a true allergy yet the “sulfa-drug allergy label” has stuck with me since.  I don't think this doctor is going to be the one to want to test the possibility that it may not be a true allergy.

That is most interesting that the medication in question comes off patent this year.  Might you know, is this a calendar year thing where it is covered until the end of the year? 

Thank you.

[Lizz]

Louris, sorry to be such a pest but I am trying to sort this out for myself. On the Igenex, could you tell me what was their number of test that you were positive on ?

Babesia is such a specific diagnosis. I want to get further Igenex testing but as you know it is pricey. If you don't mind, the test number would really help. Thanks!

[Parisa]

Louris,

I know paying out of pocket is really hard especially when it seems like treatment is open ended and you don't even have the actual proof of positive lab work.  My husband's babesia testing came back negative but he had alot of clinical symptoms and we decided to treat anyway.  That was a very wise decision for us as treating the babesia has been crucial to his recovery.

We first treated with artemisin, zith and mepron.  Unfortunately, that didn't quite do it and six months later we really went after it again with malarone, IV Flagyl, then malarone/IV Zith and then we followed up with IV clindamycin and qualaquine.  I'm knocking on wood here as I tell you this but my husband hasn't had any babesia meds now for about two months and he hasn't relapsed.  I'm hoping we have finally tamed that beast.

If you go on the forum at Lymenet, there is a poster by the name of Groovy 2 (member no. 6304).  He had a really bad case of babesia and then was unfortunately reinfected so he has done several protocols.  The last protocol that he did was a primaquine chloroquine protocol which he swears by – he did think though that some people might need to bring down the load a bit with some of the other babesia meds.  I don't believe Groovy2 is exactly rolling in the dough and I think he ordered some of these meds from online pharmacies or got them from Mexico.

[Kim]

[user=48]Lizz[/user] wrote:

Louris, sorry to be such a pest but I am trying to sort this out for myself. On the Igenex, could you tell me what was their number of test that you were positive on ?

Babesia is such a specific diagnosis. I want to get further Igenex testing but as you know it is pricey. If you don't mind, the test number would really help. Thanks!

Lizz,

You can go to the Igenex site (igenex.com) and look at the section, “what tests to order” and it explains what tests and test numbers are for babs.  The FISH test is one.  You can also call them.  In the past, they have been very helpful.

kim

[louris]

Lizz,

I don't know the exact number of the test.  He ran babesia microti and babesia duncani (WA-1).  I was positive on the babesia duncani.  If you go to the listing with the CPT codes, it looks like test number #720 for the duncani and #200 for the microti.  I'm assuming this is what he ordered as the results sheets list IgM and IgG results.

Parisa,

Well, if this round of the three to four months of Mepron (assuming that's how I proceed), in combination with zithromax and artmemisin is his plan doesn't do the trick, perhaps it will be available as generic if I have to go back on it at some point in the future.  I read one account stating that the lifespan of a red blood cell is four months and that it is wise to treat with the Mepron/Zith combo for five months.  Any insight on this?

Thanks.

[Lizz]

Thank you , Louris. I talked to the owner of Igenex, Dr. H, who interpreted the tests I had already took. He recommended I take a babesia series test and gave me the number. It's expensive. I just wanted to see what tests others were taking to compare price, etc. Thank you for the info and I hope you make progress on the new meds!

[Parisa]

Louris,

I'm hoping you'll be one of those people who can treat with a simple round of Mepron, however I do believe you should treat at least 4 months.  Don't go off if you feel like it is still there after Mepron, switch over to malarone or some other protocol.  When you go  off, you should have a back up prescription because Babesia unlike Lyme is fast moving and you can be flattened in a couple of days.  Also it builds resistance fast and you don't want to give it that chance.

There are different strains out there which is why some respond differently to mepron, malarone, etc.  My husband made more progress on the malarone than he did on mepron but he was also doing IVIG so that kind of clouds the results I suppose.

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