Chicagoland Lyme Support Group

I was released from the ER and went home. All I wanted to do was to sleep. That same night we were all going to a restaurant for my sisters birthday. The shortness of breath and all the other symptoms continued. In the middle of the night I went to another ER, at which time I was told I had bronchitis. I took the antibiotics but the problem continued. I would go to work everyday as a nurse for months I would have a fever of around 100 degrees. Terrible shortness of breath and chest pains took away from my sleep. I was sent home several times from work because the boss would notice that I was having trouble breathing amongst all the other symptoms. This continued for months. In January of 1995, I started a new job. Hoping it would cause less stress and allow me to heal my body because it was a smaller office, less patients and very close to my house. At the end of January I was at work one day when I was walking down the hallway I got extremely dizzy and disorientated. I was bumping into the walls as if I was drunk or on drugs. I went to several doctors and had several tests but no one could figure out what was wrong. I had this horrible pain in the pain of my head and neck. I thought I had a brain tumor but the tests came back negative. Honestly I was hoping they would have found something so I could find out what was making me so ill and controlling my life. I still continued to try to work. I called in sick many times and left early a lot. The days I would go into work I'd come home and go right to sleep. Or I should say attempt to sleep, shortness of breath made this very hard. At this time I was getting very cranky due to constantly feeling awful and losing sleep. My fiancé and I broke up. I was fired from my job due to too many sick days I took. I continued to go to several more doctors. I finally received a diagnosis in the spring of 1995. Chronic fatigue syndrome (CFS) and fibromyalgia (FM) is what I was told I had. I thought at the time, finally something to work with. I went around for many years being treated as if I had CFS and FM. I had developed more symptoms. Muscle and joint pain started, brain fogginess, headaches, dizziness, confusion, crushing fatigue, burning sensations on the skin, food allergies, chemical and environmental allergies, weight gain ( I gained 60 lbs for no reason whatsoever), and many more that I cannot even think of. In September of 1995 my sister got married and I was the maid of honor. I was seriously considering not going to the wedding, that's how sick I was. I managed to try to muster up some energy and go. It was one of the most awful events in my life. I thought I was going to pass out the whole time. I left early and I did not enjoy myself at all. Family still talks of this day and honestly I really don't remember much. It still bothers me to know that this special event was ruined for me due this illness. Then in the Fall of 1997 I had a blood test done at which time I was told I had a high level of the toxic heavy metal Mercury. So I started on chelation therapy and in May of 1998 I had my silver amalgam fillings removed. I continued with the chelation therapy for about a year. It did help to a certain extent. I started to get over all the food allergies I had developed over time. That had brought me to a new level but I still felt very bad but at least I could sometimes leave the house and do things. Before this I had been housebound for about 4 years or so. All I would do is go to the my doctors appointments. Many times I would need to cancel because I was too sick to even go. Very ironic I know but unfortunately the truth. Then in the spring of 2000 I was going to a doctor who caught wind of CFS and FM possibly being caused by Lyme disease in certain people. I had a blood test done and it came back equivocal, meaning nor positive nor negative. I then had a LUAT test which came back positive for lyme. I was also tested for babesiosis and ehrlichiosis and came up positive for those as well. I was trying to figure out how I got these tick borne infections. I had to try and use my foggy brain and think. I remember that I was in Wisconsin a week before all these symptoms began. I never noticed a tick bite or a rash. I found out later that a lot of people don't either. I began treatment and noticed a herx reaction. I continued antibiotics and eventually found a lyme literate doctor. I started IV Rocephin and it did help to a certain extent. I had to go off it due to problems with the IV lines. I have been on oral antibiotics since. I feel as if they do help. When I stop taking them I notice I do feel worse. I am still very sick but not nearly as bad as I used to be. I honestly feel if I was diagnosed earlier that I wouldn't have had to go through all of this. I lost my career, independence, health and much more. Not to mention the financial problems are unreal, lost everything. I am still trying to get well and will never give up. I am now 30 years old, I got sick when I was 21 years old. It's very hard being so young with a chronic illness. This is why I started the support group to try and meet others in the same boat as me. I think we can offer information, support and much more to each other.