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Posted 11/26/2014 4:31 PM (GMT 0)
Had my appointment today. Had to do a phone consult because of the snow. Had massive anxiety again. Told the doctor my anxiety is increasing a lot. He said it is still the lyme and I need to go back on abx.
Just took my first dose of it in a month.
I will see him in person in 2 weeks.
He said full dose for 1 week then 1/2 dose of abx then we will see.

The good news is I am hoping my anxiety goes away again.
Now it is very clear to me that this increased anxiety is the lyme and not some other thing. I actually feel it extra badly today.
darn. I hate this.
So the good news is maybe after a week or so back on abx I will start to feel better again.
Of course then the issue is, if I could do it that long and get anxiety back so easily, how long will I have to do the abx for and will it ever get better?

bummed and scared. Feeling anxious right now.
Posted 11/26/2014 5:20 PM (GMT 0)
Kate - I know you're worried...but you knocked it back once, and you'll do it again.
This does happen - symptoms come back...and you need another round of the big guns.

Hang in there...you may be feeling well within a week, again!
Posted 11/26/2014 5:50 PM (GMT 0)
Hope you see some improvement soon.
Posted 11/26/2014 6:03 PM (GMT 0)
Katebirch, It won't take more than about two or three days for the anxiety to go away. As soon as your antibiotic plasma levels go up the anxiety will dissipate. I have tried it three times and for me I feel better by the second day and it is gone by the third day.
Posted 11/26/2014 6:13 PM (GMT 0)
I wonder if it's partly the time of year making it flair up again also. So many people do better in the warmer, sunnier summer months.
Posted 11/26/2014 8:26 PM (GMT 0)
KB,

So sorry! I'm glad you are being treated. Which abx did he put you on?

My anxiety has only gotten worse on abx, not better! I have my appt on Monday. Not sure what changes will be made. But I stopped all my abx yesterday due to severe anxiety. I just couldn't take it anymore. I was on mino and flagyl.
Posted 11/26/2014 8:40 PM (GMT 0)
and also my fatigue is back. I have had some days and today is one where I am EXHAUSTED. Now that I have talked to the doc it is clear that this is all lyme. :(
I am back on doxy and malarone. not the rifampin.
I see the doc in 2 weeks and then he said we will probably try the abx for six weeks but not sure what then.
I like my doc so much and am so lucky to have him he really knows his stuff.
I slept all day today and am still exhausted. Took my dose of abx this morning- not so anxious at the moment but bummed and exhausted.
Bcause yes I believe the abx will knowck the symptoms back but then what happens when I get off them again? wIll I ever be fre of being haunted by lyme?
Posted 11/26/2014 10:25 PM (GMT 0)
How do I know if I will EVER get better?
If 6+months of abx could be undone in two weeks ( I should have called the doc in two weeks, but I was unsure at the times and let it go a month) what will it take to fully get this into remission?
I asked the doc and he said we just have to take it step by step- get me feeling better first and then see what has to happen.

If I have to do many more months of oral abx to get better but I actually DO get better that is fine. If I do months more of abx and then it jus comes back again that is tragic.

I also do not want to do iv abx, obviously. That terrifies me.
Anyway I am just so bummed today and feel like this stuff is not cureable.
I mean- I guess some people have to do abx for a year or something- right? And then they get better?

Any helpful enocuragment for me? I am really worried and depressed.
Posted 11/26/2014 10:41 PM (GMT 0)
Kate - It's still early for you...maybe all you needed was a few more weeks...it's trial and error.
Eventually, I believe it will be in remission...for good.
Posted 11/26/2014 10:52 PM (GMT 0)
Some people need 2 yrs of abx. I just spoke to a woman in Saratoga who said it took her 4 yrs, but she is now totally free of Lyme and has been off abx for over a year!

Like you, she tried to come off abx after about a year, but it came back! So she went back on abx and beat it!
Posted 11/27/2014 12:53 AM (GMT 0)
So I have decided I am going to work on my mind's response to it. I am working on the concept of non identification. To see the part of me that is the observer and is not affected by life's troubles.
So instead of going into each symptom with increasing worry, I could respond by just seeing it, and seeing the part of me that is still separate enough from it. I can still smile and love people and enjoy life, even if the symptoms blare on.
This is something I have been wanting to do for a while- to work on my mind's response to things. I generally have gone into fear mode a lot and worry about things and get wrapped up in them. Instead I just want to see the things, see the symptoms, and just say- yeah, so this bacterial infection isn't fully treated.
Yes my ear problems and anxiety and fatigue are the bacterial infection. But I just will treat it longer and eventually it will go away. In the meantime I still want to identify with the things in my life that are peaceful- the part of myself that is fine. I want to look at beautiful things and just let the bad stuff arise and go away as things do. So that is my intention with this new stage of things.

I think I really just didn't treat long enough. I need to treat 2 or 3 months past every symptom, but I only treated abot 1 month past about 85 or 90%. I am not sure why my dr did that, I know he knows about treating past the symptoms.
I think he and I weren't really sure that some of my symptoms were syptoms because they were subtle-- mostly the tinnitus 9 which could be lots of things) and the clogging ears ( which are bad again). Now it is clear to me that the clogged ears still show the infection. So now I know- and I see my dr soon so I will discuss with him about treating 2 or 3 months past any symptom. But I am determined to have a good response to this mentally! I want to still enjoy my life and my loved ones even while my ears are clogged and I have some anxiety and I know I still have lyme and I am on antibiotics. I don't want to let it lead me to despair- I want to say screw this stuff- yes I have it and yes it is annoying but the good stuff in my life is more prominent and I will notice that more.

Post Edited (Katebirch) : 11/26/2014 6:05:29 PM (GMT-7)

Posted 11/27/2014 1:08 AM (GMT 0)
Wow Katebirch, thank you for that. For some reason your comments really rang true for me just now. I guess I've been trying to do that but you just put it into words in an inspirational way. I hope this shift in minds response helps you. I think it's a great way to approach this infection.
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