Feeling worse

I don't understand how this is all working.

I am feeling worse today and yesterday.

I had had a few good days and now I am worse than previously. My ear rining is back full force and my body feels toxic. I feel awful and overwhelmed.

I  feel like I need to talk to the doctors once a week not once a month.

I don't know if the malarone is having a bad effect on me.

I inadvertantly took one day off rifampin and one day on and now I don't know if I should take it again today or take a break.

I need to get my liver checked per doctors suggestion but I do not even know where to get that kind of blood test and want to just get on the liver help if I can.

I seem to feel worse in many ways thn before I even started treatment. Except the anxiety is a little better. sometimes.

I am trying to power through this but my thoughts are discouraged- I miss my healthy self so much. I feel worse than before treatment which is so weird. I mean not totally, but in some ways.

How do I even know if I am getting better? I don't feel better. Been treating for 51 days so far.

I thought I would be feeling way better at this point.

I knwo a lot of it is toxcitiy in my body.

I have to take my rifampin now or else take the day off. I just started feeling so bad again yesterday. Today is worse. 

Post Edited (Katebirch) : 6/7/2014 3:25:55 PM (GMT-6)

Yeah, I am sticking with the rifampin. I took it again today. I still wonder if I should pulse it 4 on 3 off like the doctor said, but I do feel that one day on one day off seems wrong. ugh.

I would do acupuncture but I am so scared of needles! Is there anything non needle like ( like acupressure?) that works?

I do not think I am detoxing enough. I think about that all the time. I ordered that tree of life detox kit but am still waiting for it. there is  asauna place about 15 mins away but I havent gotten there or to get a massage yet. I don'texercise enough. I try but I don't right now. I drink as much water as I can, take liposimal gluthione, . not sure what else.

Sometimes I wonder about just taking a day off the antibiotics once a week or every two weeks to give my body a break?

I am not sure what else to do.

I hate the malarone so wonder if I should just switch back to the plaquenil? anyone have an opinion on that?

And also I wish I had more faith that this is temporary. I mean when I feel this bad this far in it feels like this is the ret of my life. IT better not be, I find myself longing for any time in my life before I was sick. I want to be healthy for me and for my husband and child. It is so sad to be sick. And so unfair- for all of us.

I don't understand why this dumb infection does this- gets a little better then gets worse. Seems so weird. I also wonder if the herx thing is a hoax and the doctors' way of pretending we are getting better when we aren't?

I know people who had lyme way worse than I did but in different presentations. I had a close friend who had it in his knees realyl bad but he had no mental symptoms. Another guy I know got the bells palsy thing and joint pain- and he said he cured it with two months of doxy and has been fine since. The first person cure it with two or threee months of iv antibiotics.

But I don't understand why I have such a werid presentation in my head- and ears- and mind. And why it isn't just getting better every day, a little bit better. When I first started treatment the nurse told me I would feel worse for maybe two weeks and then she sai- but the good thing is then you will start to get better and better!

not so much.

I can't figure all this out.

But--- I found a tick bite and small rash on my leg september 2013. Never saw a tick ( and I did tick checks many times a day even before that and at that time too).

Got on doxycycline right away(with serapeptase and Grapefruit seed) but stupidly only managed 10 days of it.( I was confused and wasn't sure it was even a tick bite and the rash went away the next day). Did 2 weeks of nothing, then got sacred about lyme so did 2 weeks of samento/banderol and then 2 weeks of amoxicillan ( plus samento banderol serapaptase and gse). then I thought I was okay. Had no symptoms. Did nothing for 6 months. Then I started having panic attacks. that was my only symptom even at that point, and also fatigue, extreme fatigue and lethargy and depression. 

At that point I had not even taken a test because the doctors I saw- even though they knew about lyme- said the tests were inacurate and not worht taking. I think that was the worst bit of info they gave me- and wrong too- because I should have gotten the igenex test long before that.

So I started suspecting lyme at that point and got on doxy and found my current llmd- and made an appointment, an on the phone the receptionist told me to get the igenex test. So I go that and it was positive. Then I had my llmd appointment on April 18th and got on-- minocycline, plaquenil, artemesia, cryptolepsis, nac, mthp something or other, norival. Then after a month I added the rifampin, and at the most recent appointment he switched the plaqunl to malrone ( which I hate).

Oh, and my ear ringing and ear pressure staretd some time in April- really I had the ear pressure first, and then after the ten days of doxy I did just before I strated my current protocol the ear ringing started and has not gone away.

And then the general feeling of unwellness that I now have has just continues. And when I started the rifampin I had a ramping up of the panic attacks. And now I still have some anxiety but am not sure of the level as I stay home as much as possible right now. ( I am a stay at home parent and don't have a job at the moment). I am still scared to go out much so I guess I have anxiety- but it is not as bad when I am just home with my family. And my ears still have pressure and ringing and I just generally have a feeling of malaise that is hard to descrive, but it keeps me home a lot and away from going out and socializing.  A lot of mental issues and physical issues in my head region.