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Posted 5/9/2013 7:41 PM (GMT 0)
I've been in treatment for about 14 months now, and, all-in-all, I felt like I was making progress. I even thought I was "cured" a few months ago because I'd had maybe 2 weeks of feeling normal. Hah. Well, my LLMD started me on Malarone, which was new for me, about 5 weeks ago in combination with Clindamycin, which I had been taking with no bad effects. As soon as I started the Malarone, I felt like hell, so I called him and he said go down from 2 pills daily to 1. When I saw him last week, I told him my mood was still really in the tank and my heart felt like it weighed twenty pounds. He said to go down on the Malarone even further to half a pill a day. He said that I was probably herxing from the Malarone which was attacking the babesia and causing these neurological symptoms to worsen. I had been taking Deplin to help my mood and it worked, at least initially, but now it does nothing. No matter how mild the method of herx, nothing I've tried has made me feel anything but worse.
I am so down today and I haven't had a decent day in 6 weeks. It's even hard to talk. My daughter and son, who are both grown and could help so much with just a kind word, are too self-absorbed to be of any support, even though I believe they know I would do anything
for them. I get the feeling that my illness is raining on their parades most of the time, and who wants that, right?
Right now, at 3:39 PM, after sleeping for 9 hours last night, I am so tired I can hardly type. I'm afraid to nap, though, because when I do, I wake up feeling like I'm in hell.
I know so many of you are far worse off than I am, and I do pray for
all of you writing on these boards, but I'm not young and strong any more, and on days like this I feel like all is lost, I'll never feel better and even if I do, that hellish mood will come back and crush me yet again. Sometimes I feel like I don't even have Lyme, that my brain is just wired all wrong, like I'm a freak, even to my own family.
Posted 5/9/2013 8:17 PM (GMT 0)
I am sorry you are having such a hard time. I can relate to your post.
I also have Babesia and it flares every 5-7 days. The emotional symptoms of my herxes are starting to become worse than the physical ones.

I have not started treating it yet, insurance hasn't approved the Mepron.

I can assume these feelings are from the die off, or just the beast of the disease itself. I read that once the physical symptoms get under control, the last ones to go can be all this tough emotional stuff!

I too feel like a freak who cannot control my day to day thoughts. I can be angry, anxious, depressed, I just don't want to be around anyone to see me like this. Talking on the phone is hard!! Somedays I feel very happy, and I cherish those.

Try to up your detoxing. These neuro toxins seem to really "hang on". And this constant up and down feeling of these moods makes it tough.

I am interested in what others might have for advice. Take care. Know that you are not alone. I am trying to do research on how to get myself through this.

I hope you get some relief soon :-)
Posted 5/9/2013 9:05 PM (GMT 0)
My heart breaks for you. I have been there, done that. But it really does get better. Once you can get the brain clear and think positive, the physical stuff gets easier to deal with and then little by little you start living again.

Can you take a short cat nap? It really helps me to just laydown and do deep breathing for like a half hour. It clears some of the toxins and refocuses the brain. The neuro stuff is definitely the worst. Hang in there. We are all in this together somehow.
Posted 5/9/2013 9:31 PM (GMT 0)
I don't really have advice for you, but I wanted you to know you're not alone...

Some days I think I'm not sick, just imagining things - but then my symptoms are very real and prevent me from having a normal life (even a very creative mind could not invent those bizarre symptoms - lol). Those little creeps really mess with your mind...

Take care Missyouall! They say it gets better!!
Posted 5/9/2013 11:51 PM (GMT 0)
There's a really good song by fun http://www.youtube.com/watch?v=HMkb2_OJUZ0
the first 20 seconds of the song is horrible but you've got to get to the chorus to see why I love it.

It gets better, it gets better, we'll get better!
Posted 5/10/2013 12:05 AM (GMT 0)
Missyouall,

I am sorry to hear how sick that you are right now. The only advice that I can give is to experiment and find out what the best ways of detoxing are for you.

The sleep issue is a huge one for those with this illness. It is common to have endocrine gland dysregulation and neurotransmitter issues. When my daughter was so sick, she had very strange sleep behavior. She only rarely was able to go to sleep before about 4 A.M., and then would sleep for 10-12 hours. When she finally woke up she felt as though she had not slept at all. It was as if her sleep had no restorative value at all. I know that it was terrible for her, and I know that it is terrible for you.

Hang in there because there will be better days ahead!

Don
Posted 5/10/2013 12:57 AM (GMT 0)
I just want to thank you all for your kind words and suggestions. Isn't it strange that we can be consoled and encouraged by virtual strangers rather than by those closest to us? That's why this forum is so wonderful and so necessary. I take all your words to heart and I am sorry for your struggles as well. On a long grey day like today, I am so glad I had all of you to turn to. Thanks again

Opugirl, can you give me the name of that song? I can't get it to come up through the link you provided.
Posted 5/10/2013 1:12 AM (GMT 0)
It definitely sounds like herxing. Herxing causes severe depression and anxiety; especially with babesia. The only thing to do is to detox as much as possible & in many ways as possible and just keep telling yourself to fight through this and that "this too shall pass". The fact that you were seeing good days is a GREAT sign that you're healing. Babesia is a tough one-hard to treat and severe herxing. Conquer it and you'll be so much better!

I was herxing severely for the past 4 days and was in a really bad place emotionally. Woke up this morning and the herx had lifted and I was in good spirits. The herxing really messes with our psychological state.
Posted 5/10/2013 1:41 AM (GMT 0)
Mystery aillness, what us the gentlest detox method you know of? Every one I've tried has made me feel worse, even mild dry-brushing.
Posted 5/10/2013 1:46 AM (GMT 0)
Its called it gets better by Fun. Although apparently, I just learned, its about doing it for the first time. LOLOLOL. I'm such a dork...just pay attention to the chorus. I'm not a perv I swear!!

Post Edited (opugirl) : 5/9/2013 7:49:53 PM (GMT-6)

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