 |
| Photo courtesy of CDC website |
I ended up taking home a brochure that has some good information in it... if anyone wants to take a look at it, let me know and I will gladly share... (don't everyone call me at once though, I only took 1 copy... LOL!!!) I know a lot of this info seems redundant to most of you, but this blog is for Jon and I too, it's our way to nicely organize our thoughts, frustrations & information. That being said, I apologize if I bore you with my details sometimes. I'll be honest, it does seem boring, but when you're unwillingly put smack dab in the middle of a journey it's important to educate yourself... and others :)
So that's your 1st lesson in Lyme for the day... now, onto the doctors appointment. This is where I really learned a lot. I know a lot of this isn't going to mean a lot to you, but again, it's a place for me to keep my thoughts and newly learned knowledge. Plus I realize that MANY of you do enjoy learning new things, after-all you're supposed to learn something new everyday :)
I had educated myself quite a bit about Jon's new meds. In my research I had come across the word "Herxing". I know many of you are going to be amazed by this part, but I didn't tell Jon about it... that's right, I kept my mouth shut... hard to believe, I know... LOL!!! Here's a good explanation I found on herxing...
"Within a few days (usually one to three) after beginning antibiotic therapy, it is common for many patients with Lyme to suddenly begin experiencing a worsening of their symptoms. In some cases, this experience can be extremely uncomfortable. Additionally, it can also be mistaken as an allergic reaction to the antibiotic drugs that have been prescribed. In actuality, this reaction is a positive sign that the antibiotics are working and is known as the Jarish-Herxheimer reaction. Commonly this name is abbreviated to Herxheimer, or simply 'Herx'.”
Here is a link if you want to read more about it, click LymeBook.com
It really bothered me not telling him about this, but I knew his appointment was coming up soon and I just didn't want him to worry about it or even anticipate the symptoms. When we met with the doc he asked how he was feeling. When Jon told him he had been having a really rough week the doc got a smile on his face, and right then I knew why... Jon is "Herxing". It really sucks that Jon has to be in SO much pain, but it's {hopefully} a really good thing in the whole scheme of things. Jon has to continue the meds through Sunday, and then he will get a week off from the Metronidazole. After that week he will start another 2 week cycle of it. It's crazy to think that it has to get worse before it will get better, but his doc seemed very happy with the results, and we just need to have faith that good things will come.
Jon's doctor went over the results from the Western Blot Lyme Test, and given the facts, Jon's doctor feels very certain that Jon has "Chronic Lyme". What many of you probably don't know is that the treatment for Chronic Lyme is quite controversial. When you look at all the facts, it's hard to believe that some groups don't really believe in "Chronic Lyme". I'm seeing the results right before my eyes, and it sucks!!! Another thing that sucks about it, is that because of the controversy, many insurance companies will deny treatment. Ugh, it's a vicious battle!!!
His doctor shared with us his willingness to provide any support he can for Jon. He highly recommended 2 different doctors. Dr. Michael Ledtke in Saginaw, MI and Kenneth B. Liegner, M.D., P.C. in Armonk, New York, both of who he has met. We've also heard from others that they are the best of the best when it comes to Lyme. It was very bittersweet hearing his recommendations. At this time, we both agreed that since Jon's body seems to be reacting well to the antibiotics (even though he is herxing right now & in A LOT of pain), that we are going to wait before we pursue further avenues, and just pray, A LOT!!!
Our doctor really is amazing!!! He actually listens to us and answers our questions with sincerity. We go back in 4 weeks to check-in, and that will continue until Jon is symptom free. He did share with us that if Jon was maybe having 1 good day a week right now, that he would be happy if Jon could have 2 good days in a week. I'm pretty good at math, and that means if he has 2 good days, that he could still have 5 bad days. Yes, that's pretty hard to stomach, BUT we are NOT giving up!!! We are going to take ALL THE GOOD DAYS WE CAN!!!!! We are going to Make EVERY moment count!!!
Blessings!!!!
p/s... I apologize if there are any parts that "don't quite make sense"... it's been a long day, but I wanted to get this posted today, while it was all fresh in my mind.
No comments:
Post a Comment