Wednesday, March 14, 2012

C. Pneumonia Treatment Update

I think I mentioned in my last post that I started antibiotics (Minocycline) a week ago Monday. Per my MD's instructions I started at 1/4 of a pill since the bacterial load in my body is so high right now.

Even 1/4 of a pill caused an intensification of symptoms. I increased it on Saturday. By Sunday I found myself in group therapy with Eeyore, Debbie Downer, and Emo. You can imagine what went on in that group. I was experiencing all this negative self talk. My mood was the darkest its been in a long time. I believed that day that there was nothing to look forward to in life anymore-that all there is, is more pending losses and what's the point of it all anyway. I could have cared less if I had a fatal heart attack.

Monday was a weepy day. I turned on the tv and saw Hillary Clinton was speaking. Upon realizing she would not be President I burst into tears. I cried at most commercials especially those involving dogs, and I sobbed at the Bachelor finale (yes-I did watch the Bachelor). I thought I would never be in a relationship again and what a failure I am, etc....

I was concerned at how bad I was feeling so I did some research and discovered that its all herx related. My lymph nodes have been sore and I've been having lots of heart palpitations, some shortness of breath etc.-all consistant with a C. Pneumonia herx. So I was encouraged by that.

I'm tolerating the Minocycline surprisingly well. The dark mood seems to have left thank goodness. I know it will likely return next time I increase the Minocycline.

I'm hopeful about this treatment. I firmly believe that cpn is my primary infection. I also started taking phosphatidylcholine by BodyBio. It helps clear toxins and also slows down the progression of neurodegenerative diseases. It is helping. I feel like I'm on the right track in terms of treating this illness. I just have to figure out how I can make it to my MD's office 2 hours north of where I'm staying.

Chelsea's ultrasound went well. The lymph nodes have decreased in size rather than increased as would occur in lymphoma. She is getting more lethargic (from the cirrhosis) which is heartbreaking. I'm hoping the new diet and liver supplement will give her more time. We'll repeat her labs at the end of the month.

It has been an expensive few months. My savings account has been drained from everything. I've had many unexpected expenses ($2000 for Chelsea testing, food, and supplements; $900 for a new crown, $500 plus for 4 new tires; and so on). In addition I'm paying for Cobra at almost $900 per month. I need the extra coverage right now in case I need surgery. It looks like I'm also going to need another epidural for my back.

I'm trying to stay present in today. The future is overwhelming. I have no idea where I'll be living, how to make friends while battling ME, how to deal with the isolation and stigma this disease brings. I get frightened at what lies ahead so I'm taking things one day at a time.

4 comments:

  1. I was so glad to hear from you after such a long silence. I'm sorry things are so tough for you right now. Even though things are going rough, I know you're hanging in there the best you can. I hope some positive things lay ahead for you. It's time! All my love, Toni

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  2. I am really touched to find your website, and am so sorry to hear of your incredible loss and struggle. I can relate to a lot of it actually. I am wondering how your doctor is if you're willing to share that. I'm looking for a new doctor who specializes in CFS, and being in southern California I'd rather stay West Coast if possible.

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  3. Thank you Toni. It's always so nice to 'see' you. I too hope for positive things ahead! I hope things are going okay for you...

    Anonymous-Thank you for stopping by. My doctor is wonderful. I feel lucky to be working with him.

    If you want to know his name and contact info-send me an email at cfswarrior@gmail.com. I'll be glad to help in whatever way I can...

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  4. Hang in there.... I'm so sorry things are so hard right now. Praying that today is better than yesterday and that tomorrow will be even better!

    Blessings to you,
    Elaine

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