I went through the standard procedure when diagnosed: general dr took my blood, yes you have Lyme, here's your doxycycline (doxy) and you're fine. But I wasn't fine. The doxy was vicious on my system. The dr didn't warn or educate about antibiotics. I was constantly having yeast infections, a common side effect as the doxy eats away at the good and bad bacteria. I also wasn't educated about the Infectious Disease Society of America (IDSA). They're a group of doctors who tell the insurance companies and the drs how to treat infectious diseases. Their take on Lyme Disease is you're sick for 3 months. Afterwards, if you have any symptoms, it's all in your head. Seriously. I was warned about this from a friend who has Lyme Disease and I thought there's no way a dr will believe that when I'm coming in the office with a sheet full of symptoms. But that's what the drs did. I went to 2 infectious disease drs who told me that I was making it up to get attention after 3 months on doxy and no change to my symptoms. The neurologist was my favorite when he did certain neurological tests, he told me I was faking the pain as I was crying from the tests. I had multiple blood tests to see if I had fibromyalgia, MS, lupus, among others. I also had an MRI because the headaches were so bad. The neurologist and the infectious disease drs said my next step was a spinal tap and if that produced nothing, I could wear an IV antibiotic bag in hopes to get rid of the disease. They wanted me to wear this bag the week I was supposed to graduate from college. I know, amazing through all of that mess, I concentrated on my classes to graduate. But I turned down their request when I went to see my friend's Lyme-literate dr (LLMD) the week before graduation.
Her dr saved me. When I think of him, I think of his kindness to my barrage of symptoms. I think of his consideration to my particular plight of being a single mom. I think of his expertise to tell me not only did I have chronic Lyme Disease, I also had a co-infection of Bartonella. Bartonella gave me wonderful symptoms like fever, fatigue, headache, poor appetite, swollen glands around the head, neck and arms, sore soles, and mental status changes. The mental status change would cause irrational mood swings that made PMS look tame. The day I knew my dr was on to my symptoms is when he gave me an antibiotic dosage to treat the Bartonella and I went postal on my brother/roommate because he left dishes in the sink. It was a minor issue but I remember something took over and I was screaming and yelling. And when it was over, that something that took over left and I was bewildered over what took me over and I had an angry sibling. My Lyme dr reduced the dosage and everything was good. He also put me on the Anti-Candida diet. He said that with the amount of antibiotics I was going to put in my body, I would need this diet to keep me healthy. And it did. It was a rough diet, it goes smack against the Standard American Diet. But my body thanked me as I followed this diet. I knew that this was the kind of dr I should have seen from the beginning when after a month of following his treatment plan, I remember getting out of my car and walking without pain for the first time in 6 months. I still get a little misty-eyed when I remember. I was so thankful to have my life back.
But it wasn't smooth sailing. Staying on the regimen was hard work. Exercise when your joints don't want to move is hard work. If I ate ice cream (my favorite) or any "normal" food, my body would start to have the symptoms I had before. It was a constant check to make sure I was eating and living the way I was supposed to. But I was declared in remission when I had no symptoms for 6 months. In that time frame I had remarried and now was pregnant. Even after the pregnancy and checking the baby to see if the Lyme carried to the baby and it did not.
The economy has been rough and my husband and I were hit with it too. My Lyme symptoms didn't start back until I began to stress with getting a new job after being laid off and then when I got the new job, trying to keep the job. The symptoms began to creep slowly. An achy joint here and there. So I would go back on the anti-candida diet and try to de-stress. And it worked for a bit, but it left an angry reminder in my left shoulder joint and that sharp pain has stayed for most of 2011.
Then 4th of July weekend, my husband, kids and I went to Colonial Beach, VA to see the fireworks. I ended up not going with the family but staying inside with the baby. When the family came back, I helped load the van. We were with family friends and the light outside wasn't on. No big deal, I could still see the van. And I made 2 trips to the van in the dark. When it was time to go, I felt something on my foot, but I thought it was a fly or something and didn't pay attention to it. By the next morning, I had a black dot on my foot. 2 days later, there was a large, puffy ring around the dot. Now I will say with the first time I was infected with Lyme, I did not find the bulls-eye rash. On the little bit of information on the internet, it's harder for Black people to determine if it's the bulls-eye rash or not. But with what I had experienced, along with familiar, painful symptoms, I went to urgent care. I had Lyme again.
Was I bummed? Yes. But I was hopeful. At least it was found immediately. The next couple of weeks will be rough and dealing with doxy again. But I'm hopeful this won't be like the last time.
