From the wife of a Lyme & Tick Borne Disease Warrior💚
So where do I begin.....back in April 2014 my husband Danny woke up with this debilitating pain behind his eye, like someone was squeezing the back of his eyeball. After a few days he went to Urgent Care who sent him to the ER which was followed up by scans and tests looking for tumors or blood clots, none of which were found. He was then sent to several specialists and many more tests done, hospitalized then released to be told nothing is wrong with him. After months of going to a chiropractor he was told to see a neurologist which included more tests. While seeing this group of doctors he started waking up with swelling in his joints that migrated daily. Finally one of the doctors said it sounded like he has Lyme disease. He did some bloodwork and sure enough had 4 positive markers. He ordered doxycycline for him but the next day he called and said it wasn’t Lyme because it didn’t meet CDC requirements so stop taking. We did some research and found a Lyme literate doctor who helped for a while but was very expensive and not covered by insurance. In 2016 we got into another Lyme literate doctor but once again expensive and not covered by insurance and almost 6 hours away. Danny was on a variety of treatments including IV antibiotics which I had to administer every day and sometimes twice a day. We had a nurse come in weekly for a year as well. After spending thousands of dollars I felt like we were living in the twilight zone... we couldn’t afford to keep doing this and our primary doctor didn’t believe it was Lyme, kept sending us to all kinds of specialists who did multiple tests, except Lyme, and couldn’t find anything wrong. We felt helpless. I was searching on Facebook and found a support group LymeWNY. We went to the next meeting and I left there crying, FINALLY people who understood what we were going through and believed us because their stories were exactly the same! This group of people are the most caring and compassionate people, always there to listen and help and they are all volunteering their time to help others while living their own busy lives. It is so nice to go share our story with others, learn of treatments others have used that they have had success with and to comfort new people that come with that same helpless look we had when we started. This is a horrible disease which most people don’t understand unless they lived it. It is often called the silent disease, you are told you look good but nobody knows how you actually feel, everyday is different, some good days and some bad.
I am forever grateful for this group, LymeWNY is like family to us, like a home we can go to and know people there care and are willing to help in any way possible. I miss our Lyme family and hope we can meet again soon.