Wednesday, August 13, 2008

A House of Cards

Living with CFIDS is like living in a house of cards. For the past 7 months, I've been building my house, bigger and higher, feeling better and thinking I was finally in control. Now it feels like my house of cards has collapsed around me, and I don't even know where the breeze came from.

I pretty much hit bottom yesterday. I woke after 10 hours of sleep still feeling exhausted and weak, still with terrible pain in my knees. I called my doctor's office, like I'd planned to, hoping to discuss my lab results with my doctor. Instead, a nurse cheerfully told me all my blood tests were normal, and the doctor thought it was "just CFIDS." I told her I was getting worse and I didn't think it was just CFIDS. I said I wanted to try doxycycline (abx used for Lyme). She relayed my message to the doctor and came back to the phone to say, "The doctor says she is not going to prescribe doxycycline."

A panic had been building in me for the past few days as my symptoms got worse and worse, and it exploded out of me at this news. I started to cry and tried to explain to the nurse that the Lyme test was unreliable. I got no where and finally hung up in frustration. I immediately called back to the receptionist line and asked for an appointment.

When my doctor walked into the exam room a half hour later and saw me there, she was furious with me. From her perspective, I was second-guessing her decision, professing to know more than her, and had also been rude to her nurse. By this time, I was sobbing uncontrollably. I tried to explain that I only wanted a chance to talk to her directly, to understand the details of my lab results, and to discuss options, like we've always done. She gradually calmed down, and we did just that, but I was devastated that I had harmed our previously good relationship. I realize now I should have asked for an appointment from the start and bypassed the whole phone/nurse situation.

Bottom line of our lengthy discussion was that we have no idea what's causing this severe crash and knee pain. Not only was my Lyme PCR test negative (it's known for false negatives), but there was also no indication of any infection in my bloodwork. Everything was perfectly normal, in an eerie deja vu from my first year of being sick when no one knew what was wrong with me.

The best possibility is probably that some sort of virus has triggered my CFIDS to worsen...but then why not any signs of infection? She finally agreed with me that the risk of leaving Lyme untreated is too great (despite Lyme now being less probable)and said I could try 1 week of antibiotics to see if they have any effect. If not, then we agreed I should probably see an Infectious Disease specialist.

So, here I am, once again waiting and resting. As I expected, yesterday's emotional upheaval made me even sicker today, and I still feel bad that my impulsive behavior pissed off my very supportive doctor. But, having talked through possibilities and options left me feeling less panicked and more peaceful.

Now, I'm trying hard to let go of any pretense of control, giving in to the need for complete rest (it took me all day to store up enough energy for this little session on the laptop). Now, I begin at the beginning again, slowly and carefully picking up my cards and stacking them up again.

9 comments:

  1. Oh Sue, I am so sorry. I'm glad you were able to repair things with your doc. They are so sensitive about patients asking for specific treatments, etc. You know that CFIDS can be cyclical, and that there can be lots of triggers for worsening. And sometimes we never know the trigger. Take care of yourself, and rest. Hang in there. I had a rough day yesterday too, but we have to keep on keeping on.

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  2. Anonymous7:39 PM

    Don't give up hope. It's devastating when you've been better and you get some bug or flu or "just" a relapse. Don't give up hope.

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  3. I'm so sorry Sue. Please don't feel bad that you could have handled the situation with the doctor differently. We all feel that way in retrospect about things, especially in a stressful situation. The positive is that, in the end, you got the treatment you wanted to try with a promise of a referral if you don't respond to the antibiotics. And, you repaired the relationship with your doctor. So, aside from you're feeling so sick right now, you did get accomplished what you needed to. Keep us posted.

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  4. That sounds so awful. I can totally relate, having watched this happen over and over with Terri. Is your doctor an LLMD? You may need more than a week of antibiotics before you see a change, even if it is Lyme. I do hope that you feel better soon! I know it's so scary.

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  5. Sue, I'm so sorry! Don't feel bad about the confrontation at the doctor's office. With CFS, we have be our own advocate. It's good that everything worked out with the doctor in the end. Please let me know how the antibiotics work and how you're feeling. I hope your weekend goes ok.

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  6. I'm so sorry to hear about how badly your feeling and what happened with your doctor. I wish you speedy healing. I got so frustrated dealing with the doctor I had through my insurance that I ended up seeing a doctor who specializes in chronic illness and lyme. My old doctor also kept dismissing my symptoms. I wish you speedy healing and a sense of peace.

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  7. I'm so sorry to hear how badly your feeling as well as what happened with you doctor. I had a lousy doctor through my insurance and got tired of him constantly dismissing my symptoms. I found a doctor who specializes in chronic illness including lyme and who agreed to treat me clinically. I had to pay out of pocket though. It sounds like you did the right thing and good for you for advocating for yourself. I wish you a speedy recovery and a sense of peace.

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  8. Your house isn't all the way down, I just know it. I recently ended up with thrush in my throat/mouth and before I was able to get to the doctor, I was sure that I was just as sunk as ever. But the doctor helped me to see that this yeast problem is lots better then the systemic ones I've dealt with in the past. So I wasn't going as downhill as I had thought. With the strength you've shown in the past several months - you still have a foundation and a couple of stories up on that house, it just doesn't feel like it right now. Hope you find the answer to your problem soon. Praying.

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  9. Hi Sue,

    I'm sitting here reading your article shivering because it sounds so familiar. Living with CFS is like "the perfect storm." You think things are turning around, then BAM!

    All I can say is that there are people out there who feel your pain and are probably the only ones who really understand.

    God bless!

    Annabelle

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