So, where to begin...
If any of you wish to know my story before now, you could always see my first post for the detailed backstory. But please feel free to ask questions too if you'd like. I totally intended to post updates after going to my first visit with an LLMD, but without going into all the personal details, let's just say life has been a little hectic (isn't it always!) and every time I would sit down to type I seemed to get pulled away from the computer. If I wasn't being pulled away for something, it would be because I was exhausted and crashed out on the couch! Anyway, here's the long overdue update. Sorry for the delay!
I had my first LLMD appointment on January 3rd, and overall, the appointment went well. I was feeling a little overwhelmed (like most of us do), but I managed to speak to most of the things which I was concerned about
, and I was satisfied when I left that I had made the right decision when choosing my doctor. The doctor was very confident upon seeing my previous test results, my list of symptoms (current and prior), and the pictures of my bite rash, that I most certainly should be diagnosed with Lyme. This was not news to me, but it definitely felt good to have a doctor not tell me "you must have something like MS, or fibromyalgia because you had sufficient treatment for Lyme already." It also gave me a sense of relief to have an official diagnosis from a doctor who was confident that I could be successfully treated.
After checking me over, and determining that I had a slight candida infection, I was prescribed doxycycline at 400mg a day, and Plaquenil (I don't remember the exact dosage, but the doc said it was half the "normal" prescribed dosage per day). He informed me why he was prescribing the Plaquenil for its cyst-busting capabilities, and he also informed me of the possible side effects. He did say that the scarier side effects associated with Plaquenil were quite rare, and would be rarer still from a lower dosage. Along with the doxy and Plaquenil, he recommended that I increase my acidophilus dosage per day because I was not taking enough at that point.
The doc also drew blood in order to test for co-infections, along with a liver panel.
My next appointment was in the beginning of February.
Between these first two appointments, some of my symptoms such as joint pain, and cramps/pains in my calf muscles seemed to lessen greatly. But some symptoms, such as lightheadedness and tingling on my shins persisted. I also had dizzy spells frequently, and these spells were very short, but also very disorienting. I also suffered a full blown panic attack in January, which I've never experienced before, and I went to the emergency room with a blood pressure of 169/117. While in the hospital, my pressure came down, and I began to feel better with some rest after about
2 hours. They sent me home after the emerg. room doc suggested I had an anxiety attack due to stress. Since then I have not had another attack (came close a couple nights ago, but more on that in a bit). After that attack, I still didn't feel too terrible most of the time, and I was able to go about
my day without too many symptoms. One day I did try to do a little more physical activity than normal and my legs did act up a bit, but other than that, not too bad.
At the second LLMD appointment, I went over everything I had experienced and explained the circumstances surrounding my panic attack. He did seem concerned, but it had happened two weeks before this appointment, and when I told him I hadn't experienced any more attacks since then, he just asked that I notify him in the event that it occurs again. He also told me that my bilirubin level was just a tad high and prescribed milk thistle and NAC. Also, he extended my doxycycline at 400 mg a day, discontented the Plaquenil, but added Bactrim now too. Scheduled next appointment for March 2nd.
Between February and March, I began to feel MUCH better. More energy, almost no calf muscle cramping or soreness at all, very little tingling, and thankfully no panic attacks. The lightheadedness and dizzy spells were mostly gone, with just a few instances where I felt slightly lightheaded for just a couple hours out of the day. This was a major improvement for me since the lightheadedness was constant before that point.
So at my next appointment on March 2nd, I informed the doc of my improvements, and we both agreed that it seemed like I was about
70-80% of the way to getting better. He drew blood to check my liver function once more, and continued my prescript
ions for both doxycycline and Bactrim. He said "let's get you to 100%." I left feeling pretty great and went home feeling confident as could be. THEN.... (there's always a then!)
The very next day after my appointment, I woke up with what felt like a head cold. This made sense because my 5 yr old daughter was just getting over a nasty head cold, which my wife had just before her a week or so before my daughter. The cards were stacked against me. So I woke up feeling achey all over, a little feverish (though I didn't have a temp.) with the chills, and a stuffy nose. I did some sinus irrigation with sea salt/baking soda a couple times that day, and got some extra rest. A couple days later I was feeling a little better, and I carried on as normal. Now here's where things started to turn for me. Since that weekend with the head cold, I have had a gradual emergence of a lot of symptoms which I haven't had for a long while. I now am having headaches behind my ears, at my temples, and on the top of my head, and my face and ears are constantly flushed and feel hot. I am not running a temperature at all, but I feel feverish with the chills, and sensitive skin on my shoulders and back. The tingling on my shins is back, and my calf muscles are cramping again, and so are the arches of my feet. I haven't felt this miserable in a long time. I called the doc last week to get his opinion on what is going on, and when I told him about
the head cold he did say that it is common for something like a cold to trigger symptoms but that they will settle. That was last Thursday, but I went through all of this weekend feeling pretty awful, and Friday night I even felt like I was on the verge of another panic attack. I did everything I could to relax and fend it off, and I managed to get through the night without a full blown attack. Now it's Sunday night and I have to go back to work tomorrow and after a detox bath and my night time dose of abx, I don't feel ready at all. Head hurts, ears are ringing, neck is sore/stiff, and my face is hot and flushed. Might call the doc again tomorrow, but I just hate feeling like I'm being a pest when this could very well just be a herx. But then I feel like, is it just a herx? I haven't felt like this in months....
Anyway, thanks for reading, and sorry for the long post.
Be well. Cheers.
