Lyme - My story thus far

[mjfmurray]

Well to start this all off and like to say hello to you all. This is my first post here as I haven't known i've had lyme disease for too long, and I hope some of you are willing to read this long story i'm about to post. I'm a 19 year old male living in PA having a hard time coping with my recently discovered disease.

So on to the story, it all began about 4 weeks ago with an intense headache that was unbearable. On the 4th day of having this headache I finally said enough is enough and headed to the emergency room. After getting a catscan, lumbar puncture, and a few other tests doctors could not explain what was causing my headache. I was sent home, only for my headache to get even more intense the next few days probably due to the lumbar puncture. I ended up going to see my family doctor who diagnosed me with migraines and started me on a beta blocker, a steroid to get rid of the headache, and imitrex for when I was beginning to get a migraine. The headache finally ended on the 7th day of having it, and I was feeling good due to the steroid I was prescribed (which I believe was prednisolone). However, as soon as the last day of that steroid was over all of my horrors began. I started having chest pains with my heart always beating at about 95bpm even when resting and I began to get pretty scared, knowing that i'm 19 and pretty healthy and usually have a heart rate around 60 something when resting. I figured it was nothing and it would go away so I waited about 2 days, and then I started having weird thoughts and wasn't thinking straight and then I was really scared. I told my mom we were going to the emergency room, and on the ride there I spotted a rash on my right arm that I hadn't noticed before. It took about 5 hours in the waiting room before I actually saw a doctor, showed her my rash and she immediately knew that it was the typical EM bullseye rash that lyme disease causes. At this point, I felt relieved that the doctors had finally found out what was wrong with me. They prescribed me doxycycline 100mg twice daily for 21 days and sent me on my way. They did not tell me what I was in for in the next week of having this disease. I got home and started doing some research on lyme since the doctors hardly informed me about anything lyme related, and quickly realized how much more serious of a disease it was compared to what I was told. I thought back and got pretty angry at my family doctor for prescribing me that steroid, considering every day I was taking that the lyme was probably just thriving inside of me. After doing my research I was extremely exhausted and needed to take a nap so I did. Woke up a few hours later feeling horrible, with a 101.5 fever and just laid there and took some ibuprofen. The next few days I just laid in bed not feeling so great, and extremely tired all the time. My heart still wasn't feeling right, almost like it was overworking to pump blood throughout my body so I returned to see my family doctor. He gave me an EKG which everything was fine on and told me it was probably all due to the beta blocker and told me to stop taking it. I hadn't been taking the beta blocker for about a week before I went to see him for my heart, so I knew that wasn't the case. Then sitting in the room with him I broke out with a rash that looked like poison ivy all over my arms and was itching like crazy, so I showed him and he told me I had poison ivy. I told him that's impossible, I haven't been outside in weeks and he told me just to let him know if the rash got any worse. When I got home I did some research and found out that lyme can cause a-typical rashes that look like poison ivy. At this point, i'm really upset because I know i'm being treated by doctors that have no clue about lyme disease and some of its symptoms. My family doctor also told me 3 weeks on 100mg doxycycline twice a day was probably OVERKILL to get rid of lyme disease. That really made me angry, because I knew that the recommended dosage was much higher than 100mg and for longer than 3 weeks. From everything that I have read, the minimum amount of time lyme disease should be treated with doxycycline is 4 weeks because the lyme bacteria are reproduced on a 4 week cycle and you need to kill it in the bacterias growing phase. On about my 4th day of treatment on doxycycline, I began symptoms of bells palsy. I am now on my 6th day of treatment and my bells palsy is pretty bad now, half my smile is gone and my one eye doesn't move anything like the other but I can still close it. I contacted a LLMD and they want cash in hand because my insurance wont cover it and my family just doesn't have the money for that, nor will we ever so I feel pretty depressed and helpless right about now. Every doctor i've seen so far seems to think that this disease is no big deal, even though I continue to see new symptoms almost everyday even with the antibiotic treatment. I'm also so fatigued and tired I can hardly do anything, I need to take a nap everyday - sometimes multiple naps and my head is always a little foggy and my thinking unclear. I get mild headaches and the vision in my eye on the side of my face with bells palsy goes blurry every once in awhile. I'm concerned because I don't know if the amount of doxycycline i'm taking will be enough to kill of the lyme disease, and I also have concern for co-infections like babesia because I was not tested for them and from what I read about babesia I have a lot of the symptoms it causes. I don't know who to see, I can't find a LLMD my insurance will cover, I feel pretty helpless really and I still don't feel good enough to do anything I just sit around all day and nap.

Well that's my story so far, i'm sure I missed a few details and the story may be a bit unclear but it's the best I can do right now. Any input or help is appreciated, and I thank the people who actually read through the whole story considering it's so long. Thanks again.

[JackieCalifornia]

Glad to hear you are feeling better.  If the symptoms return or if your shortness of breath does not go away, do consider going back to the doc to discuss further treatment, or find an LLMD for an evaluation.  Best wishes --

[mjfmurray]

Well, doxycycline treatment is now complete as of yesterday. First day off of antibiotics, we'll see how it goes. Still seem to be getting tired more than I should, I usually start yawning and getting really tired around 8pm. Hoping that is just an effect of "post lyme" but we'll see. Before lyme I would be able to stay up for very long periods of time and hang with friends but it's tough to do that still. Also my muscles seem to be getting sore very easily which is odd, I think i've had more sore muscles this past week than i've ever had. Just from some games I used to play with friends all the time like ultimate frisbee and basketball. Hoping that my lyme is gone, but it's hard to tell. From what I read it can take months after lyme disease for your body to rebuild back to normal so on to that journey I begin. I also got winded very easily while exercising, sorta hard to breathe almost like asthma. I'm going to continue on with my everyday life and see if continue to improve or not, only thing to do now is give it time I suppose.

[ewford]

SWEET!   hope it works out, just take more ABX to ensure the lil buggers are completely gone.  I just met another person who got 4 weeks ABX after bullseye, 1 yr later, he can't button his shirt, had to retire as a policeman as his symptoms were so bad.   He's on a medical dissability now.   4 weeks dosen't cut it and the CDC needs to know that.

[mjfmurray]

Will do, first day i've been able to play my drums in 5 weeks. Feels great.

[JackieCalifornia]

that's good!  keep us posted.

[mjfmurray]

On day 12 of my antibiotic treatment, feeling great. Still taking vitamins every day, staying hydrated as much as possible. Still have facial paralysis, and a little brain fog, but overall I think my body is killing it off well. Virtually no fatigue anymore, can basically live my everyday life now with a couple brain farts every now and then. Keeping updated so there's info and hope for others like me.