May, 2012

My Story: Building Frustration

I have now been on antibiotics for close to five months. Before I was even diagnosed, I knew what a long road it could be to recovery. I was fully expecting to undergo years of treatment. At my very first visit with him, my doctor estimated that my total treatment time would be between two and four years, but he also predicted that over the next few months I would improve by leaps and bounds.

After years of emergency room visits ending with "we don't know, go home and see what happens" it felt amazing to finally have someone tell me I would get better. My hopes soared. Then this past Thursday, I went in for my monthly check-up, and those hopes were dashed.

I have not made the progress he expected. In fact, there is very little improvement and some symptoms are actually increasing in severtity. Though it is quite common to herx on antibiotics, this is not a herx. A herx would not continue for five months straight, and even if it did, it would not be the same symptoms the entire time.

©Lemon&Lyme

They may be colorful, but as pretty as they are, they're definitely not all sunshine and rainbows.

Though the benefits of taking antibiotics usually far outweigh the risks, when they're not actually fighting the bacteria the way they should, they can be very problematic. My liver enzymes had become elevated, despite my diligent detoxing. I had also begun to have some serious issues with my digestive system.

My stomach lining is taking a serious beating, leading to frequent stomach aches and bouts of nausea. I reenact the scene from the Exorcist about once a week. I also have quite a bit of trouble swallowing, making it much more difficult to eat solid foods. That's why most of my recent recipes have been smoothies and beverages.

So I'm now on another medication for liver support, I've greatly increased the frequency of my detox, and my antibiotics have been switched to another oral that will hopefully work better. However, because the new antibiotic is even harder on the stomach, I have to do something about that too.

I'm taking the weekend off to let my stomach recover a bit, but I'm definitely concerned that three days isn't going to be enough recovery. There is very little point to taking oral medications when you can't keep them down for more than ten minutes. While there are other courses we can take, they're not all that pleasant.

©Lemon&Lyme

I'm worried this may be more than once a week.

I don't have a problem with either needles or blood, but I don't think anyone can say they enjoy being hooked up to an IV drip. It works, it saves lives, but it's not fun. I'm now beginning to wonder if it's a road I'll have to go down. I'm keeping my fingers crossed that this isn't the case, but if my system can't tolerate oral antibiotics, then I'll need something else, simple as that.

I am also getting much more rigorous with my diet. Before, I just followed the diet outlined in the book Recipes For Repair. I have now taken everything containing gluten and dairy off of that list, as well as the majority of the sweeteners. I'll allow myself very small amounts of raw honey or maple syrup once in a while, but aside from that, most of my sugar intake comes from fruits, which I also keep to a minimum.

Even knowing everything I do about the persistence and complexity of this illness, it is still incredibly difficult to prepare oneself for this kind of news. Even fellow Lyme-sufferers have commented on the incredible amount of work I put in to changing my lifestyle and following my regimen. It is extremely frustrating to hear that after five months, it's hardly done anything to help me.

However, I do know that I can recover. I'm not the kind to give up as soon as I hit the first obstacle. I fight for the things I want. If I do need to switch to IV medications, I will do so whether I like it or not.

On a more positive note, my new wheelchair is currently on its way to my house! Very soon, I'll be able to get around on my own again. I am extremely thankful that even though my legs don't work correctly, I still have about 60% of my upper body strength.

©2012-2013 Lemon&Lyme
Questions or Comments? Email Ginger at ginger.lemonlyme@gmail.com