Babesia--new med--MEPRON????

[dolfnlvr]

Lovely.  My LLMD appt yesterday left me feeling about as flat as a tire can feel after being slashed with a razor sharp implement.  *sigh*  

HHV-6 Clean
EBV-Clean
Strep Titer--Still High, but not HIGH HIGH

So, it's none of those, which is good news, I know--but NO ANSWERS and still feeling exhausted, drunk and dizzy most of the time.  

My amoxicillin levels came back at over 20 somethings which is apparently nice and high, just where she wanted them to be at or near IV levels though acheived by an oral dose--but, no Herxing, no improvement and no sign of, well, anything, just like I said in my last post.

Good news (though of little solace these days) she believes me that I don't feel good and that this is not "all made up in my head."  She thinks possible co-infection like Babesia, but I tested negative for the Eastern strain so she was stumped.  She ruled out Bart because I have no Bart symptoms--no shooting stabbing pain, no numbness, none of the Bart stuff--but she ran a panel along with the Erlichia, Myco, etc etc etc again just to be sure.  She also ran a west coast strain test for Babesia, apparently it is showing up along the east coast with increasing frequency--without people traveling to the west to "pick it up" so she's running a hunch.  We'll see.

Meanwhile, she wants to lower my amoxicillin  a bit and has ordered a script for Mepron for 1 tsp 2x day for week one then 1 1/2 tsp 2x day after that with a fatty meal.  She also wants tme to take a supplement called Resbid to "keep my liver happy."  I go for CBC, Complete metabolic panel and Mepron (Atovaquone) levels in three weeks to keep an eye on my inerds.  

Gotta say--I worry about doing more harm than good over time with all these serious drugs.  Who knows anything about this new regimine?  Anybody on or been down this road?  Apparently I'll be drinking "yellow paint" for a month.

BTW  $660 for the iGenex run for all the co-infections, esp. the western Babesia.  OUCH!!

[Ricobord]

Yes, I have Lyme + Bart.  The only signs I had of Bart were lots of neuro and gut problems, and anxiety.  I tested well into the "not negative" range at IGeneX, which made sense given how long I'd had it (6 years).  They say antibodies peak at a few weeks after infection and then slowly decrease.

Apparently, there are many strains of Bart out there that do not show up on the b.henselae test.  Burrascano called them BLOs, Bartonella like organisms.  He said they look like Bartonella, and respond to the drugs used for Bart, but don't show up on tests.

In Pamela Weintraub's book, "Under Our Skin," she describes the time her son was disabled by fatigue.  The famous Lyme ped Dr. Jones said it wasn't Lyme.  Eventually a doctor figured out it was mycoplasma.  I think you've said you were tested for that.  I really don't know much about it.  My doc did mention that if I turn up with it or with chlamidia pneumonia my treatment will take longer.

[mojogal]

You got it from now on I am calling them brain boo boos. LoL

[JackieCalifornia]

I promise not to smack you for calling them 'lesions.'

I however will deploy the highly technical term 'boo-boos'.

:)

[mojogal]

Barts to me is a nightmare, it seems hard to treat and can hit us all in different ways and hid in my body as Lupus, Hoshimotos, those brain lesions (Jackie, I say lesions just because I don't know what else to call it), vasculitis, I had vision problems and muscle weakness and on and on, if babesia is easier to treat or there is a more direct way to get rid of it, than all the better. Us folks with Babs, I think rico has it too, am I correct rico? It can cause all sorts of misery. Dolfnlvr good luck to you and hang in there it is a wild ride.

[Ricobord]

A problem with Babesia is that it can make you sick at a very low level of infection.  Malaria infects blood cells at a fairly high level, wheras Babs does not.  It is pretty easy to find malaria. But I have read it can take up to ten smears to find Babesia. Most labs won't do that many. Even at IGeneX, some people with Babs come up negative.  It is good that your doc is looking at that, as hidden Babesia is often a reason for little to no improvement with Lyme treatment.

In my case, I tried herbals to see if they made any difference.  They didn't so I never took mepron. We have concluded I don't have it.

The whole trial and error aspect to Lyme+ treatment is a further indication to me that this is one complex, tricky set of bugs.

[JackieCalifornia]

Bartonella didn't lift it ugly little head for us, but from everything I read, it's a significant piece of misery.  Babesia is a Thing That Can Be Killed in a straightforward fashion, but babs (from what I read) is murkier and more of a tussle.  I'm glad your doc is paying attention.  Hang on!  Keep us posted.

[dolfnlvr]

Cool, thanks!  

I'm glad the Bart was in the panel though, because I'm reading that cats carry that as well.  I have three barn cats, all of which had conjuntivitis last year, right before I did--which is a symptom of Bart/cat scratch.  The whole, do you have cats question never came up though, so I never thought about it...but we definitely fought with the pink eye around the farm last summer--and in July-BOOM I get hit.  

Totally glad Bart was in the mix now that I read up.  

What a wild ride this is.  

[JackieCalifornia]

Yeah, docs are finally figuring out that ticks can't read maps and just go wherever they like.  Duh!

I had Lyme and babesia, and my LLMD treated the babs first, with Mepron (aka atovaquone) and Zithromax (aka azithromycin).

It worked.  After the babesia was gone, I felt 80-90% better.  After all, babs is in the malaria family, and it's pretty common knowledge for over a century now what misery THAT is.

Go for it!