Getting sick of it :(

[Ephedra]

I feel so much worse with this medication I've been on (Biaxin and Mepron)..  And nearly every medication that I've been on so far..  I'm only hoping that means the medication is working..  I just can not help but think that they are doing more harm than good..  I just feel like I'm poisoning myself with these medications..  Anyone else??  How am I really suppose to know?  I don't like to pester the doctor unless it's more of emergency... But I've already asked for labs a few months ago and I was denied.  A part of me wants to give up on it.  I'm healthy apparently, so I would think that my immune system should clear up any infection that I have.  I'm not wanting to give up on it.  But I just do not feel well, and I feel like these medications are doing bad things.  I'm not one to just jump and assume that this is a herxheimer..  I'm open to all possibilities..  

Anyone been on Mepron??  It kind of seems like that is when things started getting bad.  

I'd appreciate any thoughts!!

[bdonahue7]

I was on mepron for 2 weeks last month. By the end of it I could hardly function physically and emotionally. I had to take a leave of absence from my job of 18 years. I don't think I'd ever felt so depressed, thank goodness that eased up after stopping mepron for 2 or 3 days. I know how you feel like the drug is slowly killing you...since then I have started IV abx and finally feel like I may be on an up swing. This is the 1st time I've felt this since staring treatment in Oct. 2013. Best of luck!

[Ephedra]

Thanks!  That helps a lot!!  

[mojogal]

I finally had to switch to malarone. You need too keep an eye on your RBC on this med. within 1 week I would up in the hospital and had to have blood transfusion from the anemia.

Good luck.

[Ephedra]

Wow that's interesting!  Thanks!  Too bad my doctor apparently don't know that.  

My insurance will not cover Malarone...  

[cave76]

A friend of mine just started Mepron and Biaxin so I sent him the package insert for Mepron.

http://www.webmd.com/drugs/drug-1374-Mepron+Oral.aspx?drugid=1374&drugname=Mepron+Oral

(There's a reason those package inserts are called Terror Sheets LOL. They list every possible thing that might happen for CYA reasons. But I'm sure you can read past that and understand.

Oh, and the study done for Mepron used many advanced stage HIV patients.

"Adverse Reactions: Because many patients who participated in clinical trials with atovaquone tablets had complications of advanced HIV disease, it was often difficult to distinguish adverse events caused by the drug from those caused by underlying medical conditions. There were no life-threatening or fatal adverse experiences caused by atovaquone tablets."

Just be sure you know what an anaphylactic reaction is.

Have you gotten what we lovingly call Biaxin Mouth yet? I remember that all too well. Sorta a metallic taste in your  mouth.

You sound as if you're very sensitive to medications.

[mojogal]

I belong to so many FB Lyme support groups and you are the only one who's insurance covers mepron so congrats.  Since mepron has malarone in it, you may want to check on your RBC occasionally.

Good luck.

[cave76]

My insurance covers Mepron and almost every thing else a doctor could order.But I can't get it in Oregon, which isn't my insurance company's fault but a certain person in Oregon (and high up Kaiser Permanente) who has made doctors here afraid to treat for Lyme.

http://lyme.kaiserpapers.org/oregon.html

[Ephedra]

Yes, I always read through some of that stuff..  And I didn't really see anything that stuck out as being too much of anything to worry about.  And even if I did, I would take it with a grain of salt.  Because as you probably know, in these studies 1 in 10,000 could have an issue and it would be included in the side effects..  The ones that that the percentages are always more helpful.  But I am still open minded..

And yes, it does seem like I am sensitive to medications..  I just don't know why??  No MTHFR, not too many obvious issues with detoxification...  I could be looking at rare side effects, and wala..  I get more of the rare side effects than the common ones, I think...  I don't like to pester the doctor all of the time, especially with these "rare" side effects..  I don't mind dealing with side effects as long as they are not permanent!  There are some medications that can cause permanent damage, to the eye for example..

[Ephedra]

And yes, I have gotten Biaxin mouth.  It's just bad in that I'm coughing up phlegm with an even stronger taste of it..  Making me feel sick to my stomach..  blahhh

[Ephedra]

That's interesting!  I know it is a little odd, Malarone is half the price of the Mepron.  But they would not cover the Malarone.  

Doc sent in the Malarone.  And it was denied coverage, so we were just going to assume that the Mepron would not be covered as well..  Until I put on my thinking cap.  They covered higher priced medications than the Malarone before..  It didn't have anything to do with the price!  I thought maybe it had something to do with the CDCs recommended treatment for Babesia, which is Mepron.  But I guess not, if it is not typically covered.

I have been watching my RBC count slowly drop over the course of a year anyhow.  So, I'm sure this would probably not help anything.  

Thanks!  

[mojogal]

Really smart thinking.

My friends are on disability, maybe it's just Medicare that won't cover it.?
My friend couldn't get either med even with the Doctors help.

Heard that from several others too. I don't know why.

[Ephedra]

It's medicare that covers my prescription drugs, including the Mepron.  But I think there may be different plans and different carriers.  To be specific, it's Aetna medicare part D that covers mine.  However there are some drugs that you would think should be covered, that aren't.

Just hoping it covers IV Rocephin.  It shows no restrictions when I look up the coverage, but I'm not relying on that.

[mojogal]

My Lyme brain forgot they we all could have different insurance companies.

When I had to take it I wasn't on Medicare yet.