I haven't been on the boards for quite a while and often wonder how so many of the special friends I've met are doing. I continue to pray for every single one of you to recover and get much needed and deserved relief from this unbelievably difficult illness.

I don't know if any of you remember my story, but I was sick about five years prediagnosis and then tested pos via DNA for Lyme through Igenex and PCR pos for Ehrlichiosis HGE as well. I was diagnosed JUly 2002 and did orals for about 4 mos. but kept getting sicker so went on IV rocephin. Improved only on monster dose and had to stop it due to severe gall bladder attack, which I got removed about four months later. (I have done well without mine.) During that time I was on claforin and sicker than ever. It wasn't a herx, it was a relapse. So ultimately ended up with a new LLMP after my first who treated me for about a year got cancer and left his practice. I was put back on IV rocephin earlier last fall, but was very ill- in the hospital in SF for 5 weeks.

So, all that brings me to now. I'm very discouraged and frustrated. I feel I have been in the trenches so long and can't give up my life dreams. I still wish to return to the city I made my adult home and be back in my grad program again but realistically I have to acknowledge I'm having problems even showering without major fatigue, dizziness etc. Doctors seem perplexed by me. I have a couple of odd or more unusual things I'll list below that continue to baffle the doctors, even my great LLMD.

Anyway, I feel I'm not getting better because I suspect I have undetected Babesia infection. My LLMD says it may be time to switch from IV rocephin to do two orals (high dose flagyll and zithromaz). This is because he feels we are targeting the wrong places in the body and that I have a lot of both peripheral and autonomic neuropathies (can anyone explain the difference to me?) ANyway he has ordered a second Babesia test by says flagyll is good for cyst form of Lyme and zith would get the Babesia. PLus it may cause real die off because it is intracellular. I took mepron and zith last year but could only stand it for 5 weeks. I developed real panic feelings, depression, nightmares etc. and had a headache from hell, which is a long standing problem for me.

So, I am back here seeking guidance from all who know so much more than I and might be able to help me prioritize what I need.

Here are some of my questions (and if you can contribute to even one of them, it is appreciated):

1) I'm supposed to switch to oral flagyll and zith and stop rocephin. I'm told all together are too toxic. I'm about to go to the lab for another Babs test on Tuesday. Does anyone know if taking flagyll/zith impact the test? Would it be better to take them before or after the test?

2) ALso, how do I taper up on these meds? I am concerned about nausea and vomitting. Is it bad to taper up (less effective at killing the bugs)?

3) Since I couldn't tolerate mepron, is my LLMD correct in saying that flagyll can take care of Babesia? I hadn't heard this before.

4) Is anemia related to Babs infection? I have other symptoms that are Babesia like. I have very dramatic head sweating and sweat no where else on my body, just my head. It is so dramatic I have to take a dish towel out with me if I go somewhere- it looks like someone sprayed me with a shower nozel.

5) Finally, I've been told I have arguille/Robertson pupil in my eyes. Does anyone know anything about this or know someone else who has it or had it?

Thank you for taking the time to read my post and thanks for anything you might be able to contribute to my questions and the stage of treatment I'm at.

I get so discouraged- I can't take being sick like this for so long but I have to believe it really is Babs and not just Lyne, then maybe I really can feel significantly better. I've never wanted anything more in my life.

Sorry I don't have all the pieces of the puzzle. But I can't help but wonder why your 'LLMD' wouldn't just treat you for Babs if he suspects it, regardless of what the test results say??? Isn't that what LLMD's do?

I mean, I've tested twice negative for all co-infections at two different labs, yet my LLMD is treating me for Bartonella because I show all the classic symptoms. I think that's why my response to meds has been so positive, bc my LLMD initially started me off with Bart treatment.

I've had some pretty rough herxing experience with my meds and had to stop. My LLMD had me ramp up by either cutting tablets in half, or emptying out 3/4 of capsule and build my doses by 1/4. Every LLMD is different about this, so I suggest you speak to them first before doing.

I've heard both sides of the coin as far as taking abx before the test, so I can't help you with that, or your other questions.

Healthy thoughts to you. There IS a light at the end of the tunnel.

zithromax alone or with flagyl will not address babesia. babesia is a parasite and cannot be treated with an abx alone..it's needs antimalarial medicaitons....if you have a prblem with mepron you can always try clindamycin and quinine along with artemesinin...many have found very good results with this combo...the sweats adn the nausea etc..sound like it could be babs..I wouldn't bothter to wait for another test...TESTING IS INACURATE!!! An llmd should be treating empiracally...not by a test, positive or negative....

how3ver, your syptoms could also be bartonella. The reason i say this is because you can also have the horrible sweats adn nausea with bartonella..but baronella is also known to cause problems with your eyes..and since you are having problems with your eyes of unknown origiin it makes me wonder....another test that will probabaly not show anyting, but your llmd CAN treat you for bartonella anyway...

THAT CAN be treated with abx of usually a quinoline like cipro or levoquin with doxy or a macrolide like zithro or biaxin, or rifampin with doxy, or septra ds with a macrolide....

either way, i wouldln't wait for a test to start treatment...you sound like you need help now....

yes, can be from what I understand through treatment of my son.

I'd never heard that either Flagyl or Zith, or the combo, deals with Babesia. That doesn't mean that I know it doesn't... just haven't heard that it does. Antibiotics deal with bacteria, Babs isn't a bacteria.

I always tested negative for Babesia - but suspected I had it. So got some artemesinin (not just artemesia) and treated myself. I think it made a big difference for me. So far as I've been able to research it, artemesinin is very safe. (see below for details)

Ask your doc why he would not treat empirically for the Babesia, with real Babesia meds. Maybe there's a reason, or maybe he's just busy and missed something.

About Flagyl "ramping": yes, definitely do that! Take several days to get to your full dose. Starting suddenly can be very unpleasant.

Dan

Next 6 days: 10mg/Kg daily (all at once)
(73Kg x 10 = 730mg so I took 8 x 100mg pills each morning)

There isnt much I can add, but I sure can emphasis with the headache part. Headaches ( severe) have also been one of my issues and is one of the reasons I am not on abx as of now.

BUT as well as headaches are known in lyme and bartonella, they are also known in babesia and it makes me wonder also if you might have that. ALot of LLMD's are not even looking at tests as a definitive diagnosis for this and no- as otheres have said, zith and flagyl won't get babesia.

There's been quite a few people surface lately on here to say that they have been sick for two years, three years, even while on abx, only to go on babesia medicine empirically and have much, much improvement.

My suggestions, and only suggestions would be:

pulse therapy
Or even diamox or other classes of drugs to keep the brain pressure down while trying to get the bugs out of there

Again though, I cant really add much to what others have said, but I can sympathize with you and I, also, believe that you have a coinfection.

I do hope this gets better for you, and soon. You have suffered enough
Crime

Read my In a Nutshell post and cut and paste and print out the Romanian abstract to share with your doctor.

Note the HUGE % decrease in Mg at early onset.

Babs. Maybe. But not necessarily.