Posted 12/26/2019 2:28 PM (GMT -7)
I haven't posted or visited here in a really long time. But the reason for that is because I am well!!! I remember how hopeless I felt when I was in the throws of this horrible disease, so I came back to share my story to give you hope. Just to warn you, this may get long.
In April of 2016 I had a sudden "attack." I don't know how else to describe it. I was just standing in church and suddenly felt this "wave" come over me. I had never felt anything like this before, but I knew it wasn't right. I seriously thought I was having a heart attack. This was the one time my husband wasn't with me, so it was just me and my kids. I took my kids and stepped out of church. I was hoping it would just pass, but it didn't. A friend was outside, and I asked him to drive me to the hospital (it's almost right across the street). We got to the ER and they took me right back, and I called my husband who was on his way. But my only thought was please don't let me die in front of my kids. I had been perfectly healthy before this. Aside from a wicked high heart rate, they could find nothing wrong. It went away. The ER doc was awesome and suggested perhaps a thyroid issue and suggested I follow up with an endocrinologist.
After that episode, I was fine. I found a great functional med doc who was a wizard with thyroid issues. I was borderline hypothyroid, and she put my on a desiccated thyroid. She also recommended several supplements. I was still doing well. Then little things started happening. My ear started to hurt, but no one could find any reason why. I felt feverish in the afternoons, but my body temp was actually a little low. Then I had another "episode." It was suggested that they may be panic attacks. And I agreed that was probably it. But deep down, I just felt like there was something else going on. Like, yes, I was having panic attacks and these other things, but something was causing all of them. I felt like they were all symptoms of something else.
I was prescribed a super-low dose of Prozac to head off the panic attacks while we looked for other causes. I was also given some Xanax and Clonopin to use only when I was having an acute attack. On day 6 of Prozac, I had another episode. I took a Clonopin, and it helped. But then I got REALLY sick. Violently throwing up. Uncontrollable crying. I felt like I was going crazy. My head hurt so badly, it was torture. It was suspected that I had serotonin syndrome, so I stopped the Prozac immediately. After about 2 weeks of hell, I came out of it, and I was fine again. Maybe it was just a reaction to the Prozac.
Then after 2 weeks of being well, the bottom dropped out again. Only this time, it didn't go away or get better. I was a hysterical crying mess most of the time, and I didn't know why. My head hurt so badly that are really no words to describe the pain. I was anorexic - literally had NO appetite at all. I was nauseous constantly. I could not sleep at night at all. When I did fall asleep, I woke up agitated and sweating. I went to the ER 5 times in 6 weeks. I also lost 35 pounds in those 6 weeks. My doctor, who is awesome, was scared. I had MRI's, CT scans, blood tests. All were normal. I went to at least 6 specialists, everything from endocrinologists, to gastroenterologists, to neurologists, to infectious disease doctors. I was diagnosed with adrenal fatigue, depression, anxiety, and a dozen other things. I didn't deny that I had all of those things, but you don't just get all of those conditions all at once. Something had to be causing it. All those were symptoms of the real problem, not the problem itself. I started doing some online research, and Lyme kept coming up. My primary doc agreed that could be it, but admitted that she had no idea how to treat it. But she would support whatever I needed.
I found an LLMD in my area. On my first visit, I could barely stand up or even talk. I don't remember much. I do remember him talking about the testing and possible treatments - herbal, abx, or a little of both. I told him, if it's Lyme, I wanted to do abx. Mind you, at this point I had been bedridden for 3 months. I had to quit the job I loved. I just wanted to kill this as fast as I could. Test was positive. I took my first antibiotic in February 2017.
I knew about herxing, but holy hell. He started me on Ceftin. He wanted me to work up to 1000 mgs a day (4 pills). Then we would add Doxy, 200mg a day (2 pills), then finally we would add Tinidazole 1000 mg a day (4 pills), pulsed (3 days on, 4 days off). He told me to go as slowly as I need to. It was OK if I built up to a full dose, and had to go back for a while and try again. I was on 1 pill of Ceftin for 2 months before I was able to even add a second pill. And my full dose of abx was supposed to me 10 pills. It was June before I ever got to the Tinidazole. It was another month before I got to 2 Tinidazole. So to say it was a long road is putting it mildly. It was like 2 steps forward, one step back. I would add another pill, only to have to go back down after a couple days because the Herxing was so bad.
I herxed like crazy. I really, truly thought I was going to die. And truth be told, sometimes I wished I would. It got to the point that when it came time to try to add another pill, I would have my husband drive me to the hospital, and we would sit in the parking lot when I took it, just in case. This went on for months. But every now and then, I would have a good day. Gradually, I would have more good days. And then sometimes, I'd have a great day. This was a mixed blessing, because then I would crash again for 2 weeks. It was so defeating to think this was finally over, then have the rug pulled out from you. But the good days became more and more frequent. And the crashes happened less often and when they did, they didn't last as long. Until eventually, the bad days went away all together.
For me, abx worked. I also did a lot of supplements (still do). I changed my diet completely. I began to follow the Autoimmune Protocol Diet before even starting my abx. I still adhere to a very clean, basically Paleo, diet. I also found a great therapist I worked with the whole time. This disease robs you of so much emotionally. You feel hopeless, like you'll never get better. You're hemorrhaging money. I had to give up a job I loved. So I think therapy is essential. I did acupuncture. I detoxed like crazy every day. I did Myers cocktails sometimes 3 times a week when my Herxing was really bad. So it wasn't just the abx, but I do think they were key. I also think the diet changes were a huge contributor to me getting well. But I made it through, and you can too. I have been 100% symptom free since September 2017 and took my last antibiotic in January 2018 (my LLMD treats until symptom free + three months).
You don't hear success stories like mine, but there are more of us than not. We just don't post to these boards anymore. Maybe we should, but honestly, I just want to put this all behind me. I will never forget what I went through, but I also don't want to remember, if that makes sense. For a long time, I had almost PTSD because of this. I had to learn that not everything is Lyme. Sometimes, people get a headache just because they have a headache. But for a long time, every little ache or anything, and I would automatically be paralyzed with fear that, OMG, it's back. But I got past that. I finally feel in control again.
The point of this post is that you CAN get better. People do it all the time. You just don't hear about it, because we don't really come to places like this and talk about it. I know when you are sick, you feel hopeless and that you will never get better. But you can. You will. Just take one day at a time. It will get better. You can do this.