Posted 5/31/2015 9:25 AM (GMT -6)
I just want to start off and thank everyone who participates in these forums. I have been reading these forums for almost two years and without them I truly do not know where I would be. It has helped me through the darkest times and I am very thankful.
I will give you a brief summary of my story and will try to make this as concise as possible. 2 years ago this July I was bitten by a tick. I pulled it off and knew from that moment something bad was going to happen. At the time my sister and brother both suffered from Lyme and co infections for multiple years, I was lucky enough to evade it (up until that point). Anywho, a few days after pulling off the tick I became very sick with flu like symptoms which lasted about a week. Unbelievably, I shrugged this off and made no connection to the tick bite. It was a mistake that I believe will haunt me for the rest of my life (but hopefully not). This flu like sickness passed and I felt normal again. Fast forward to September where I began my junior year of college. In the first week of September my world was turned upside down.
Out of nowhere I began having obsessive and intrusive thoughts. The thoughts, which I would rather not say what they were about, made me extremely depressed and scared as you can imagine. I would have terrible anxiety, adrenaline would race through my body and my stomach would ache. I would wake up with adrenaline racing and it would come and go. At the time, I still did not connect this with the tick bite but knew something was terribly wrong. The anxiety and the obsessive/intrusive thoughts lasted for about 4.5 months and God only knows how I came out alive. I would pray everyday for strength and practice anxiety exercises. The thoughts and anxiety would came in waves, but was mostly constant. It was by far the darkest time of my life. Sleeping was the only time I was at peace. I somehow managed to stay in school (Fordham University). At the same time, unknowingly I had exhibited other symptoms such as slight brain fog, very tired for no reason, light sensitivity, hair shedding, large lymph nodes in neck, weight loss and a few others. I finally came to the conclusion in January that Lyme was most probably the cause and I went to the doctor. I honestly do not know why it took me until January to realize I was sick, I guess it was my ego that wanted me to believe there was nothing wrong. This too was a mistake that haunts me to this day.
In January I was tested for lyme and all co infections and of course nothing came out positive. The tests had shown I was fighting an infection but didn't we didn't know what. The tests also showed that my thyroid was very messed up. However, I had a good llmd that put me on doxy cycline twice a day for 3 months. Once I began the doxy, it took about 6 weeks for the ocd/intrusive thoughts to go away completely as well as the other symptoms. When the ocd/intrusive thoughts began to dissipate slowly, it was one of the happiest days of my life. I was symptom free for the last month of doxy and believed I had beat the lyme (only symptom that persisted was hair shedding/dandruff and large lymph nodes)
When I got off the doxy, you guessed it, the symptoms came back. Went back to the doctor, was put on doxy again for 3 months. Symptoms disappeared, but after discontinuing the doxy symptoms came back. While on the doxy I was having no ocd/intrusive thoughts or brain fog but there was clearly still something wrong with me. My lymph nodes were enlarged still, my hair was shedding badly, I had bad dandruff, I still lost a ton of weight and I knew my body was fighting something inside. I was then put on zithromax, 1 pill. Symptoms disappeared for 2 months, but when I got off symptoms returned with vengeance. I was then put on 2 zithromax a day and then the strangest thing happened, all my symptoms returned except for the anxiety. I had been put in a terrible brain fog, sleepy all the time, groin pain, hair shedding dandruff, very low energy, ringing/popping ears, terrible memory/concentration/word recollection, speaking problems, light sweats on and off, sneezing eposides/congestion in morning, teeth sensitivity to cold, slight twitching of finger, sore stiff/neck, acne breakout on back etc. This started from summer going into my senior year all the way to november.
At this point, my soul had been crushed. I truly believed I was never going to get better. They took me off zithromax and once again put me on doxy as I tested positive for Erlichia. The doctors had no idea what to do. As terrible as it sounds, I could deal with all these symptoms as long as I didn't have the anxiety ocd/intrusive thoughts. I was put on 4 doxy a day but it made my brain fog even worse and could only take 2. This didn't help any of my symptoms.
I then had a breakthrough, I tested positive for Bartonella Hensale in October. I was then put on rifampin 2 pills a day with 1 doxy a day. I didn't see any improvement. I still had heavy brain fog, low energy,ringing/popping ears, jaw cracking, terrible memory/concentration/word recollection/speaking problems (still no anxiety, doesn't appear when I am on antibiotics thank god) Then all the sudden I started feeling better at the 3 month mark. I began having more good days than bad, I began putting on weight, and my brain fog finally lifted slowly.
It was a very slow process but fast forward to today (may 31st, 6 months on rifampin/doxy and recently a month ago replaced doxy with minocycline which Ive been on 1.5 months) and I like to say I am 90% sometimes even better. I rarely have brain fog (maybe a couple of days a month) and most of my symptoms have disappeared. However, I still have floaters, occasional ear ring/pop, hair is still shedding though at a lower rate and my lymph nodes are still slightly enlarged. I do have a few days a month where I feel run down and tired all day but that usually only last a day or two which I like to say is a herx.
I wrote this to give relief to anyone out there because I know posts like this helped me tremendously throughout my journey. There is hope out there for you and it is possible to get better. I do believe I still have a ways to go but I am definitely on the path to recovery. I will be giving updates on my progression for anyone out there who is curious. I did graduate college despite all of this in January 2015 and am working full time which I began May 4th. I am currently on rifampin and minocycline. Thank you and God Bless.