So much for feeling better

[dolfnlvr]

June was great--July is shaping up to be really crappy!!!  I've been off Mepron for almost two weeks now because I ran out and needed appt with LLMD to get refill.  I got the refill, but I can't take it yet because my liver supplements haven't come in yet, so I'm still on hold.  Meanwhile--all my babesia testing came in NEGATIVE.  Yup..negative.

I am so flying frustrated at this point I don't know what to do with myself!!!  All of my blood work (ALL OF IT) has been negative.  Lyme, babesia, bart, ehrlichia etc etc etc.  I've spent at least $5,000 in tests and meds and I really don't think I'm treating anything that I actually have.  The doctor, and as you know, DOCTORS, have supported my choice to treat for Lyme and co-infection because the symptoms were so "tick bourne illness like" and my risk factors are out of this world--though I don't remember having a deer tick, or any other tick on me in over two years.  

I felt better on the Mepron--which is indicative of Babesia, or Malaria, and since I haven't been out of the country or in an area prone to Malaria since 1999--and since when I went then I was on anti-malrial prophylactics we will assume I am "clear" of that bug.  BUT--my bloodwork and antibody tests show absolutely no sign of babesia ever being in my system.  

So--was the Mepron a coincidence?  Nothing else has changed since two weeks ago--I stopped the Mepron and the supplements (N-acetyl cysteine) and feel like dirt.  I guess if I start up again, then I know that in some way or another, either the Mepron or the liver supplements are doing something.  BUT--barring that, I guess I'll sign off the site and float in no-man's land, because no one has any answers.

Haha funny side bar though.  THe shrink they sent me to because this was "all in my head" told me last night that he can't find anything psychiatrically wrong with me, and I seem psychologically sound.  He can't figure out how any of this could be tied to psychological factors--so even the cop out copped out!!!!

This really *****.....

A

[Ricobord]

Well, I guess you can always hold on to the shrink's statement that your issues are NOT psychological!  A psychiatrist is a medical doctor, so you have an official opinion that your symptoms are biological, not stress.

I totally understand the frustration.  I have hit a few low points in the last 7 months of treatment.  Hang in there...if it is any consolation, a few months of my recent past are just a blur now.  It will get better!

[mojogal]

We have all been there so no need to apologize I know most of us hope to help others so they don't have to go through all the misdiagnoses, painful unnecessary tests and frustrations with doctors who don't get it. If I didn't find an LLMD, I don't even want to think where I would be. So hang in there and keep us posted.

[dolfnlvr]

Sorry for the horrible post earlier.  I sent it from my iphone, and the autocorrect is horrible.

I got the ResBid in the mail last night and re-started the Mepron dosage, so we will see if that makes a difference again.  If so, then I won't be as frustrated I guess.  Yesterday was just a really bad day which followed a string of pretty bad days and I'm just tired of not knowing what the heck to do.  And, like I said, even the shrink can't find anything wrong with me--haha, which is funny, because like I told him, I'm sure I could make a list for him :-).

Thanks again...I appreciate your support.
A

[mojogal]

It took my friend many tries to get a positive babs test so if you felt better on the Mepron, there is a high chance that you are doing the right thing.
Don't give up due to negative tests.

[dolfnlvr]

So far the meprobamate is being covered by my prescription plan. The cost to me is very low so I'm not screaming on that front as yet. The dr has told me to take artemisinin for one week per month ALSO so I will when it comes in. My rescind came in last night so I started taking the meds.  Now I'm worried it won't work and that June was a fluke. Here's to hoping I'm wrong.

Thanks for the pep talk. I'll stick with it for now. I really pray that this is a step in the right direction.  

[Ricobord]

And if Mepron is too hard on the wallet, you could try Malarone. Or even Artemisia or Artemisinin.

[JackieCalifornia]

Ditto what Rico said.  If you feel worse OFF the meds, then they were doing something good.  

IIRC, babs is not a quick cure; I think we were on it for quite a few months.  So I'd do the whole course and then see, if your doc is up for that ... and you too, of course.

The GOOD news is that the treatment was having a positive effect.  That's the breadcrumb on the trail you maybe should focus on.

Hang in there.  That's an order!  ;)

[Ricobord]

Sorry to hear you're so frustrated. I think your Mepron experience is a good indicator that you do indeed have a parasite.  It can take many months to cure Babesia, and because it can cause symptoms in really low concentrations, it is entirely possible to repeatedly test negative even when infected.  

Some patients don't respond to a particular abx.  I heard about a guy who didn't even get better with 6 months of Rocephin (very rare), but then he showed improvement with Bicillin shots.  He did those for 18 months.  He is now cured.   You might ask about a different protocol.  You might also need to wait for the Babesia to get knocked down first, before you see Lyme improvement.  This is not uncommon.

Hang in there!  At the least, I hope you stick with the Babesia treatment for awhile.