Hey everyone, I have looked through countless sites and have found nothing that relates to my condition. I have come to the conclusion that it is a result of Lyme disease and wanted to share my condition in case anyone else has the same. I woke up Easter morning with a "dent" in the shin of my right leg. I asked a couple of medical professionals in my family and they just said it looked like I bumped it. I knew it was more than that. It didn't hurt to touch it and nothing else hurt, but it was a pronounced hole like a divet to the left of the bone that runs down my shin. It would come and go, but would be more common in the mornings. I went to my primary care who said "huh, never saw anything like that before", you need to go to an orthopedic. They also said they would do some bloodwork to rule other things out. I INSISTED on a Lyme Disease test as well. Everything came back negative. My knee began to bother me, so I made an appt with an orthopedic knee doctor thinking maybe the knee pain was related to my shin. I went to the ortho and he too said "huh, never saw anything like that before, looks like some kind of muscle atrophy." They said to just wait it out and see if it gets better, but maybe try another orthopedic that deals with foot and ankle. 3 days later the knee ortho called and said he spoke with his collegues and they think I need to go to a physiatrist (sp?) for an EMG for an ALS, MS etc test. Now I'm scared. Now I am starting to have actual pain in my calf and the dent in my shin becomes more pronounced as the pain gets greater. It is now halfway into May. I make an appt for the EMG and they look dumbfounded too looking at my leg. All tests come back negative. At this point, I am starting to feel worse all over. I'm exhausted, I feel like my insides are dying. I said to my Dad, something is eating the inside of my body, I feel like I need an antibiotic to kill whatever is attacking me, but no one can figure out what it is. I move on to the next doctor, which will now be a neurologist. Of course I can't get an appt for a month and my pain is getting worse. Meanwhile, Memorial Day weekend, sitting at a family picnic, I notice a little round ring on my leg. My family discounts it as a bug bite. It's now the end of June, I am winded, my pain is worse, my knees are buckling on me if I stand too long, can't focus, dizzy spells etc. I can’t do simple housework and people I know are rolling their eyes, saying “what are you gonna tell us you have Chronic Fatigue Syndrome?” or “come on, the doctors are saying there’s nothing wrong with you, stop being a hypochondriac”. I just want to break down and cry at this point. I make an appt with another ortho dr. while I wait for my neurologist appt. He looks at my leg and is dumbfounded as well. He measures it, says it's smaller than my left leg and doesn't know why. He decides to order bloodwork. 4 days later, lo and behold, the bloodwork comes back and he says “You have Lyme disease my dear, you need to call your primary and get treated right away”. Thank God, finally an explanation, I knew it! Freaking Lyme disease, ugh. I called my primary care doctor, they started me on Doxycycline 100 mg 2 times/day for 21 days. After the 3rd day of being on the antibiotic, I started to feel a little bit better, but then by the 6th day I took a turn for the worse. My exhaustion was unbelievable. I couldn’t get out of bed, I felt like I was drugged. I would go to work because I had no choice and felt okay once I got there. By the time I got home from work, my leg was in pain, the shin dent was back and I was thoroughly EXHAUSTED. I couldn’t even play with my 4 year old daughter. I called the doctor thinking maybe I need a higher dose, they advised me that this is the standard treatment and the reason I feel bad when I wake up and at the end of the day is because the Doxy starts wearing off around the 8th hour so until I take the next one, I will feel this way which I NEVER KNEW. They also told me that as my body seeks to destroy the bacteria, I may feel worse before I feel better. I’m on my 11th day of the Doxy and I’m starting to feel better in the morning, but I am completely drained come 5:00. My whole summer has been destroyed with this disease and I’m tired of people downplaying it. I cannot explain the pain in my leg other than a combination of a sciatic/cramp pain. It’s excruciating some days. Everything down to my elbows hurt, I feel agitated and sad at the same time. I couldn’t even figure out simple math on some days. I did keep my neurologist apt and saw him last week. He said the dent could definitely be related to the Lyme although he has never seen anything like I describe before (b/c of course at my apt time, the dent was not visible). He will send me for an MRI for my back just to make sure the two aren’t related. I’m so sick and tired of being bounced around from doctor to doctor and NONE of them knowing what I had or how to treat me. Thank God the last orthopedic I went to ordered the Lyme test with the rest of his bloodwork or I feel like I could have been dead by now – that’s just how awful I felt with this disease. I have NO idea how people go untreated for years and years, I seriously don’t.
I had Lyme disease in 2005, and I remember barely being able to walk. I did have a fever that round, this round I do not. I never saw a ring in either case (unless the bug bite one was it). I can tell you, I wouldn’t wish this on my worst enemy. I am always the one yelling at my daughter to get out of the grass b/c of the ticks and here I go and get the Lyme. The leg thing I am convinced is a symptom of the Lyme. When the antibiotic is in my system the dent and pain go away. When I wake up in the morning it’s back and before I take my medicine at night the dent and pain is back. I have 10 more days on the antibiotic and I am HOPING that it will be gone (well not gone b/c I know it doesn’t ever go away), but at least the pain will be gone. I am also hoping there is no long term damage. I don’t know how long they consider it not being treated as related to long term effects. I tested negative in early April, even though that was when the “dent” appeared, but didn’t test positive or start treatment until the last week in July. I am 47 years old. There are several things I didn’t know about Lyme and I have had to figure them out:
- You can test negative in the early stages, so be consistent and INSIST on repeat testing.
- The ring can take up to 30 days to appear so maybe what appeared to be a bug bite on me in May with the ring around it, was an actual ring.
- You can feel worse after starting to feel better once you start taking the Doxy.
- The Doxy has an 8 hour life so once that 8th hour passes your symptoms may return.
- Seems as though everyone has different symptoms or onset symptoms, mine happened to appear in my leg.
I’m not 100% convinced that the 21 days will kill this disease which took away my summer, but I’m trying to be positive, I just want to be myself again and try to salvage what’s left of the long anticipated summer. I can't take the exhaustion anymore.....