Thursday, December 06, 2012
The Phases of Lyme
I finally started reading this book today. Although I knew it to be an excellent resource, I just couldn't find it in me to read it while I was really ill. I think, at the time, I just couldn't handle the information. I was too scared. But now that I've emerged from this illness, I think I can look at the topic more objectively.
Pamela Weintraub is a medical journalist who contracted Lyme disease in the early 1990s, along with her husband and two children. So far, I've only read the Foreward and Introduction, but one statement really rang true for me and so many others with Lyme:
"When the head of infectious disease at Northern Westchester Hospital put his imprimatur on the diagnosis, we had an explanation for Jason's illness and an inkling as to what might be wrong with the rest of us, at last.
Our nightmare had just begun." (p. 2)
Doesn't that sum it up?! "Our nightmare had just begun."
This got me thinking about the whole process you go through from first symptoms to cure/remission. In my opinion, Lyme sufferers go through 4 phases.
Phase 1 is when you are trying desperately to figure out what is wrong with you. The doctors can't find anything conclusive, you have testing done, and nothing jumps out at even the specialists. They might even tell you it's stress or anxiety! You fight back. You research things on your own. You come up with the possibility of Lyme disease, and you send your blood to Igenex. You discover that it IS Lyme! You are so relieved that you have figured this out, without even the help of the local medical community. Now, you can start treatment and get your life back!
Not so fast.
You enter Phase 2.....the real beginning of the nightmare! You search for a physician who will treat you. No doctor around will touch you with a ten-foot pole. They don't believe your Igenex results. You search for a Lyme-literate medical doctor. You contact Lyme groups for information. You finally find a doctor, but he is in another country! You get on a waiting list....and you wait, and wait, and wait....helpless at this point. And you wonder how you will manage to get to appointments when you're feeling so weak and horrible. Not to mention how you are going to pay for this treatment. It's all so mindboggling, as you try to figure this out in your Lyme-fogged brain.
But the story continues.....Phase 3. You get the logistics all ironed out, and you begin treatment. You're afraid because your doctor is so far away. What if you have side-effects from the medication? What do you do if you get worse? You experience your first herxheimer reaction and you get really scared. You read, and read, and read. Looking things up on the internet practically becomes an obsession. You search for websites and blogs. You connect with other Lyme sufferers who can encourage you. You have your ups and downs. But slowly, over time, you start to improve. You get a little better with each passing month. You gain more confidence in your LLMD (who family and friends, and certainly your GP may think is a quack), and you're so grateful to have found him.
And then comes the last phase.....Phase 4. You actually recover! You realize that you haven't herxed in a few months, and your symptoms have just faded away. You are sleeping so much better, and the pain is gone. It's a miracle! And now it's time to come off the medication. You can hardly believe that you made it through, but you did. And now you try to take the best care of yourself that you can, to keep your immune system strong so you don't relapse. You get back to your job, your friends, and your favourite activities. You begin to enjoy life again, and are forever thankful for everyone who helped you along the way, and for your LLMD.
After all you've been through, you are forever changed. You truly have a new perspective on life.