How has Lyme disease affected your life? What inspires you?
Lyme forced itself upon me on my first day of vacation with my dearest friends, big blotchy rash in three or so areas of my body, no idea what it was. I wasn’t too concerned honestly… then the pure fatigue set in about day three of vacation. Here I was on vacation, the ocean right outside my door and I can’t stay awake, can’t move! Slept two days straight.
Upon returning home, I went right to my doctor’s office and they took me right in even with no appointment. The head doctor diagnosed me with Erysipelas, a sand flea bite infection which he used Wikipedia to educate me about.
Having been in college recently I knew it wasn’t a trusted site for research and my gut was screaming no not wiki! Didn’t this doctor know, my professor would have never accepted this! Well a week of Keflex and the blotches went away.
At the time I didn’t connect that I had to go to the ER two weeks prior for incredible sacral pain, I was in agony and I’m sure because of the way I was treated I was looked at like a junky! But Torridol relieved my pain! Not for long, a month after the blotches returned and it included my left leg up through the knee, my adult daughter spotted it and made me call the doc. He then over the phone said it was infected because of mosquitoes and called in another Keflex. Well in the middle of that night I woke to the worst pain of my life, worse than full blown childbirth! My left knee was in agony. Of course not wanting to wake anyone I suffered for hours laying there, at one point going to the bathroom was almost impossible, getting back in bed was a major challenge.
Finally I fell asleep again and then my 10 pound chihuahua simply laid next to my left ankle barely moving my leg, however from a dead sleep the pain was crazy. I was screaming at the top of my lungs, waking my daughter on the other side of the house. She came immediately, she inspected my leg and it was extremely swollen, lobster red and called an ambulance immediately.
I was adamant that the EMT’s couldn’t touch my leg, I would secure a towel to the bottom of my foot bracing my leg in place, they move me and I secure my leg. They did great! The drive to the ER was no picnic for my leg, luckily it was only ten minutes. Upon listening to my physician’s diagnosis and further inspection the ER doc found several more red blotchy areas and said nope you’re not going home today!
Within 24 hours my knee pain had significantly decreased and redness was reducing because of iv antibiotics, yet they had no diagnosis. They kept me 5 days and honestly I didn’t mind being there resting sleeping and letting the antibiotics work. They had an infectious disease doctor come out from a major hospital and he didn’t have a clue what was wrong.
Well after discharge I get a call — I’m positive for Lyme. I was pretty upset, but my Mom reassured me to take the doxycycline and I’d be fine. Well not so easy. I suffered for another two years almost, almost lost my Massage Therapy business. My quality of life was terrible. Of course if you look like 45 and put on a brave face, people don’t believe you that you’re sick, in pain, feel terrible etc.
I went to two infectious disease doctors over that time because my knee was staying swollen, the brain fog was terrible, I knew I still wasn’t right. Both times I got, “there’s no such thing as chronic Lyme so there’s nothing I can do for you”, complete stonewall.
Finally my heart started flip flopping to the point it was constant! My doctor didn’t believe it was Lyme carditis or anything to worry about because people can develop an extra beat as we age. I explained this was not an extra beat, another doc came in and said there’s no such thing as chronic Lyme. Well I explained I don’t give a shit what label you want to use, this is what’s going on and it’s not right.
My doc finally agreed to give me a 24 hour halter monitor. Well a week later at my follow up she came in the room, had only listened to the first 5 minutes of the recording and said we need to get you to infectious disease right away! I explained not the last two she sent me to, because the swollen leg, the pain and fatigue, the foggy brain, etc. that I’ve been dealing with, only got me more pain management and not antibiotics like I had been asking for. She got me in with a Dr. Danielle.
I went to her office and explained everything to her assistant, the doctor walked in and had been reading as he typed. She immediately took me over to the infusion center and had me on ceftriaxone, day one of thirty! She didn’t ask if I needed to clear my work schedule, or get anything else in order, I needed this now! They placed a midline and I could do my treatment at home, which was great because I couldn’t drive that far, one hour of driving myself was a suicide mission still! Well within two weeks my legs literally went half the size!! I was feeling amazing.
It’s now been 18 months since she treated me, and I feel 80 percent back to normal. I still get periods of fatigue from nowhere. Still get foggy in the brain at times, but am working on a great quality of life! I completed my first Spartan Race last May, and number two in just two weeks. That doctor gave me life again!
There has been one secondary setback, because of all the antibiotics my good gut bacteria has been wiped out. I’m now suffering from a ton of allergies and it affects my hands and wrists mainly, and randomly around my body. I’m allergic to cats, dogs, rabbits, weeds, grass, trees, weeds, urea diazinon 10 and all that includes; fake silver and so on. The allergies can make my hands miserable, and being a massage therapist, I now have to wear gloves all the time. So the Lyme is still taking from me, but I’m still fighting!