Hi, Everybody, I’m Carol and have been dealing with Lyme’s Disease and its varying side affects for 17 years. Testing has been improved tremendously since then, so don’t equate your life totally with mine. I’m writing so you don’t make my mistakes and maybe I can help you in some way. Good luck in you journey. p.s. buy a lot of sticky notes. I still can remember that first day in 1997, that I knew I was really sick. I just couldn’t get out of bed, this was not me! I was a Type A personality all the way. In 1995, I had purchased a brand new house in Oct, had a 50th Anniversary party for my parents in Nov and got engaged in early Dec. and went skiing for Xmas week out west, to round out the year.
In 1996, I moved my parents (who lived in the same house for sixty years), planned my wedding, practically alone (since my sister and sister-in-laws lived out of town). Also, I acquired a Mother-in-Law from Hell. I was so confused….I had a new first and new last name. My Mother-in-Law called me “that Woman” because I stole her only son and I had taken on my Husband’s last name. Had two wedding showers and one wedding that people said was most the fun they ever had at a wedding. Went on a TWO week Caribbean cruise to eight islands and came back tired. Usually, I came back from vacations, full of vim and vigor. This time I noticed my concentration was going, especially at work. I gave a short speech at my wedding thanking my guests for coming to our celebration, when my husband and I would be leaving and where the cruise would be going. My old boss stood up at the wedding and said “She’s been already gone for months”. He was a great boss.
Also, I went from a size 6 or 8 to a size 10, and my boss asked me if this was my “after honeymoon size”? (Even my shoes were getting too small). I remarried at 42 yrs. I first married at 26 yrs old, to a mentally and physically abusive man that lasted less than a year. Now, I was very sick, not even married one year to a wonderful guy and 45 years old. I was very skinny all my life and suddenly at 45 people usually don’t DOUBLE their weight.
You know the story now…..go to your internist…he tests your thyroid…nothing is wrong….go to another doctor…..nothing is wrong…. go to a shrink….it all in your head. Hurray!!! At least, that can be fixed, right? No, it wasn’t all in my head, but keep him/her around for when you get depressed from this monstrous disease.
Around 1990, I was diagnosed for FM (Fibromyalgia) which I call arthritis of the muscles. I took Lyrica and other pain pills that I can’t remember. Finally, after reading the internet, I went to a CFS (Chronic Fatigue Syndrome) doctor, he was an infectious disease doctor, Dr. L for a year. I trusted him with my life, what a stupid mistake. He prescribed me EIGHT huge pills used for Herpes and told me to sleep as much as I could. Crazy? I lost all my muscles strength and this doctor was in the book of “who’s who”! Before that I used work out at a gym, three times a week. Whatever you do, DON’T stop exercising, even if it’s only walking five minutes a day. You will be thankful later.
Finally, it was my Pharmacist that saved me and asked if I had been tested for “Lyme’s Disease”? I hadn’t even heard of Lyme’s Disease. He referred me to a doctor that a few of the neighborhood people went to and this doctor did tests. My lyme test was out of the ball park, and my new doctor had already reported me to the CDC.
He started me immediately on an iv, since I had Lyme’s so long and untreated for so long. I went back one more time to Dr. Who’s Who’s and I expected an apology at least and he just said, “you don’t need two infectious disease doctors”. Fuck him.
My new infectious disease doctor, Dr. M., who I still see, is a super, super intelligent doctor and is the Captain of my ship. Back 17 yrs ago, there were only two good infectious disease doctors in Michigan.
So, my iv was usually inserted somewhere near my elbow and I cut off the toes of a sock and put it over the PICC line to keep it clean and not snag it on something and pull it out.
The answer is NO, I did not have a bull’s ring and I only ever met ONE person that had it. I didn’t have a rash or any flu-like symptoms. Also, get used to people telling you that you look so good and don’t look sick, or maybe a little tired. Inside I felt like a truck ran over me, the endless pain, the tiredness, the mental fog, lack of concentration, I felt 90 yrs. old. So where did I get it? Who know? I went to Connecticut for a weekend and went hiking once when I was engaged. Also, my beautiful new house was across from a nature area, where deer lived and people hiked and went snow-mobiling. I found one on my mums and put it in an empty pill bottle and gave it to my new Dr. M. and put some grass, as food, in the bottle. He sent it off for testing and sure enough it was a tick (Wow I can identify them now) and it was INFECTED! He said at least kill them next time! I didn’t know?
-------new day ---------
Well, before LD, I very out-going and liked to be the center of attention. (I admit it at least). My pulse beat was always high and my PICC lines kept coming out, so I gained the title of the “The PICC Queen”. Gradually, I went on and received a “Groshong Catheter” surgically into the main artery of my heart. I think I only went through three of them. Remember, I had LD for yrs untreated and undiagnosed and needed years of liquid antibiotics to treat me. Sometimes, my doctor used a combo of antibiotics. Getting a Groshong, I was under anesthetics and I woke up feeling someone punched my chest very hard, a dozen times. The pain was gone in less than a week. Personally, I like the Groshong much better than a PICC line. It was easier all around. Like taking a shower and trying to cover your PICC line in your arm. Covering and keeping your Groshong dry is much easier. Next, I would recommend getting an excellent pain doctor. My infectious disease Dr. M. would go up to a Tylenol #3, but that wasn’t cutting my severe pain. Word of mouth, helped find me my first pain doctor, but I always waited three hours to see him. After a year or two of this I switched, by word of mouth again, an excellent pain specialist, who was also an anesthesiologist.
