Hi my name is Justin and I am 24 years old. I have been diagnosed with Lyme for 6 years but my LLMD suspects I have had it 6 years prior to that at age 12 when I developed the bulls-eye rash.
I grew up on the east end of Long Island and loved being outdoors and in the woods for the majority of my childhood. Every spring and summer I was pulling off hundreds of ticks from my body.
When I was 12 I got bit by a tick and got a bulls-eye rash. I went to my primary DR. and he said I should be fine and that it wasn't Lyme.
He sent me out the door without any antibiotics because I wasn't sick yet. Within days I got really bad flu-like symptoms that passed in a week or 2.
After that point I was pretty much normal or so I thought, but now thinking back there were so many signs that I overlooked over the years.
At age 18 I became extremely ill out of nowhere with a fever, insomnia, brain fog, confusion, headaches, balance problems, joint pain, muscle pain, bone pain, shaky trembling hands, twitchy muscle spasms, partial paralysis of muscles, panic attacks, light sensitivity and occasional vomiting and nausea.
I went from doctor to doctor seeing 3 GP's, a gastro, 2 neurologist's, visited the ER room twice and 3 infectious disease doctors. Out of all those doctors only the gastro tested for Lyme but it came back negative.
After researching on the computer and investigating with my parents trying to figure out what my mysterious illness was...the thing that we kept coming back to was Lyme.
I forced the 3rd infectious disease doctor to test me again for Lyme, and so he did just to appease me and it came back positive.
He started me on doxycycline 100mg twice a day but I had such bad nausea that every time I took the doxycycline, I just puked it right up.
So he switched me to amoxicillin 500mg 3x per day for 28 days. After some pretty bad herx's I started improving.
Well once the 28 days were up and I was off the antibiotics, I went downhill once again. He told me that 28 days was more then enough and it all must be psychological and that I should see a psychiatrist.
I was so upset when he said that to me I started crying so hard in the doctors office. I was just so sick and so confused and didn't know much about Lyme at that time.
Well I started doing some investigating and quickly learned all the controversy with Lyme. I went back to the doctor begging him to put me back on the amoxicillin.
Finally after my dad explained to him everything we heard about Lyme and people being sick beyond a 28 day course of antibiotics and all the other controversy behind the disease, he agreed to an extra 28 days of amoxicillin.
Once again I got worse and then started improving, but as soon as I finished the amoxicillin I once again went downhill. He referred me to the pediatric Lyme Disease Center at Stony Brook hospital (which completely sucks in my opinion).
I went there and they too told me I had more then enough antibiotics and that I needed to see a psychiatrist. I freaked out on them and started crying and screaming and asking them how they could do this to people.
I knew it was from the Lyme and was not psychological. I asked her why did I get better then while on the antibiotics and she said that was also in my head. What the hell is wrong with our medical system that this shit can go on.
Before I got sick I was a healthy, strong, athletic hockey player who worked out 6 times a week. I would not settle for the answer that it was psychological, because I knew damn well it was not.
My parents didn't buy it either. After a few months my aunt called me one day with great news.
She was telling my story at a school she worked at and one of the teachers overheard. The teacher had Lyme disease and recommended a LLMD who I still see to this day.
I did about a year of amoxicillin and got so much better. I was completely back to my old self within a year and stayed that way off antibiotics for 4 years.
In October of 2011 all of my symptoms I experienced in the past due to Lyme came rushing back. I went back to my doctor and he put me on doxycycline 200mg 2x per day.
I had many herx reactions and some improvement but not alot. I stayed on the doxy until June and was just switched to amoxicillin because of the sun and because I had such success with it in the past.
He put me on augmentin and added metronidazole because he suspected that I may have gotten ill again because we didn't treat anything except the spirochete form the first time around because I was getting so much better and returned to normal.
He believes it is very important to address all forms including the spirochete, cyst and biofilms.
I am a week and 2 days into the new antibiotics and have had some pretty major herx reactions. My doctor wants to add azithromycin once I adjust to the metronidazole and the amoxicillin.
I am praying that this will work and I will finally get back to being able to leave my house and do stuff again.
I just sit home barely able to walk and perform simple tasks people don't even think about and take for granted. Tasks like showering and brushing teeth and making food.
I am losing my mind and I just don't know what else to do. I have lost all of my friends, my girlfriend and even some family.
They just don't understand what I am going through and aren't willing to learn and listen about Lyme.
I am so glad I found this website because I am just to the point where I don't know where to turn anymore. It is so nice to hear that I am not the only one out there going through this, and that things do get better.
I just recently watched Under Our Skin and was completely blown away. What an amazing film. It is the story of my life. I couldn't believe how much I could relate to every person in the movie.
I literally watch it everyday just because it gives me so much hope and strength...and because I now have no life due to Lyme. I sit home by myself everyday bored and so sick.
Thank you for letting me tell my story and I look forward to meeting new people.
Post edited by: jmaclyme88, at: 06/23/2012 03:29 PM
Post edited by: jmaclyme88, at: 06/23/2012 03:32 PM
Post edited by: jmaclyme88, at: 06/24/2012 06:20 AM
