I met a man yesterday who's sister was treated for two weeks for Lyme disease, and that was a number of years ago. Now she is sick and can barely eat or walk. She can read a book in a day, but doesn't know anything about what she read the next day. Her husband is fed up with her. That's all I know about this young woman, but my heart goes out to her, because I was there.
What I want you to know first, and most importantly, is that Lyme disease is treatable with high doses of antibiotics even in late stage. I am living proof of it. I went undiagnosed in late stage for seven and a half years, in terrible pain, with fatigue that sucked the life out of me, until I didn't recognize pictures of my children. Then I was treated for twelve years before the Lyme finally went into remission. Now I am medication free.
It was life in hell, and yet I looked good. I have photographs of me with my daughter of five, where I look happy and perfect, when in fact I could no longer read and lived with excruciating pain and fatigue. How do you explain that to doctors? How does a husband or wife make sense of that? They don't and they can't. It takes faith to understand and treat a patient with Lyme disease, unless the individual is partially paralyzed or completely debilitated, because it can't be seen, and lab tests are often unreliable.
It wasn't until I had the sweetest, tiniest, ferrel baby kitten that I had an epiphany about what happens in the body with Lyme disease. The kitten lived in the woods behind my daughter's apartment. The mother cat had begun bringing her kittens down to the parting lot where people brought them food. Somehow this kitten's tail had been denuded of skin and hair, and my daughter caught it and took it to the vet. He removed the tail and sewed her up, and then my daughter brought her to me for care. The kitten was covered in fleas! And it was too sick and fresh from surgery to have a flea bath.
My youngest daughter was still home at that time, and we began to pick fleas whenever we had a free moment. We laid the kitten on her back, on the palm of my hand, and chased fleas through her calico fur. By the third or forth day the kitten began to relax and sometimes fell asleep. When that happened the fleas rose to the surface of her fur we assumed to leave the body and lay eggs but it gave me an idea about Lyme disease.
Lyme bacteria can attack the body and then withdraw. When the body is under attack there can be all kinds of symptoms depending on where the attack is being made. When it withdraws the symptoms leave, or at least improve, depending on the damage done. It made such sense of something that was very hard for me to understand over the years, because I could be so sick that I could barely move at times and in terrible pain after awhile, and then the fatigue would lift and I could get up and go about my life, or go to a party or whatever. How do you explain that?
I believe that Lyme is not like other illnesses that descend and wage battle until either they or the survivor win. Think of the body as the world during a world war, battles going on here and there, moving, changing tactics. Lyme is like that. It can be in a joint or the bladder, and then it might be in the brain or leg bone. It can affect the heart and the rate of digestion one day, and cause vertigo the next.
The spirochete, Borrelia bergdorferi, that causes Lyme disease does not travel through the blood stream like most bacteria. It taps it's way through the cell wall and moves through the tissue, even bone and ligaments. It actually felt like my bones and tissue were being drilled through, especially at night, or even while watching a movie or at rest. Once I reached late stage what I assume was this movement created terrible pain that could descend or withdraw with stunning quickness.
A number of years ago, I interviewed a Lyme support group about their late stage symptoms. One thing they had in common was restless leg syndrome. They kept an eye on fellow parishioners for those who couldn't sit still in church and took them aside afterwards to see if they had other Lyme affects. They used a good check list. I recommend going to the website Lymepa.org and reading the article 'The Basics.' It concludes with an excellent check list. Do not be concerned about having all the symptoms. It took years before I had a large number of the listed symptoms manifest in my body.
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