There’s so much to say that I hardly know where to start. It’s been weeks since I felt well enough to post, and as usual I missed it. It’s so incredibly frustrating for me when I sit down to write and not an un-jumbled thought comes into my mind. So bear with me here as I attempt to shed some light on the past few weeks!
First, I’m so excited to tell you that my eye specialist gave us some AWESOME news in the middle of last month! I know, shame on me for forgetting to mention it. If it’s any consolation it was mentioned in my Twitter stream. Anyway, my eyes are almost 100% better!! No more Optic Nerve inflammation or ICP for me! Turns out that taking me off both the Doxy and recently the Levaquin did the trick! My dosages of Diamox which I’ve been on for months to keep a handle on the side-affects of ICP and lessen the raised levels have been cut in half. I have a follow-up appointment with the doctor in a few weeks where if things are still looking up the Diamox will be cut out of my treatment regimen. If I could jump without getting too dizzy, I’d jump for joy!
My appointment with my LLMD was around the same time last month. I handed her a list of my worst symptoms, and we agreed that I’d been herxing since starting back on antibiotics roughly a month before. From my own observations since then, I herxed constantly for around 6 weeks. A few of my biggest complaints were horrible brain fog, fatigue, pain, nausea and uncontrollable sudden acne breakouts.
For the nausea she explained that it was most likely being caused by toxins in my stomach/gut and no medications she gave me would help to a great extent. Great. So she suggested trying Reed’s Ginger Brew, a ginger ale with up to 26 grams of ginger jam-packed into a bottle. It’s helping! It seems to calm my stomach, wish it would give me my appetite back too though.
My brain fog she chalked up to toxins as well. In her words, “we’re killing things up there!”. Lovely, no? The phrase Toxic Overload comes to my mind. The acne is being caused by toxins too, trying to get out of my body through the skin. She recommended trying some herbal tinctures that other patients of hers were showing great results with. Our hopes are that they’ll reduce the fogginess and confusion and curb the daily headaches that have come back full-force. I haven’t ordered them yet, but we’re looking into them. I, of course, would be willing to give them a shot. Once we do get them, I’ll post their names.
My parents and I are also looking into investing in getting me a co-infection panel from IGeneX. My LLMD has been hinting at it for months, but the cost has always been a deterrent. If we knew that the test would for sure give us results, then of course it would be a no-brainer. But as it is the tests can’t guaranty that every infection will be discovered. Many false negatives show up. It’s up to the doctor to interpret. We suspect that I have Bartonella, but Babesia is also a possibility. Of course, it would be much better if I didn’t have any co-infections! But if I have them, it’s best to know so we can progress with treatment for them. Our plans are to get the panel later this month since I have another appointment coming up next week, I believe.
I’ve had some new symptoms appear lately. One of the most interesting is knee pain, for the very first time in my life! Knee pain and Lyme are “tied together” by the traditional definition of Lyme Disease. So I’m not sure what to make of it. I’m also having a lot of chest pains, and abdominal pain. My foot pain comes and goes, after not being a problem for months after Bartonella treatment. But most annoying and troublesome of all has been my growing food sensitivities.
I posted a few days ago that I had been “contaminated” after eating out. That means that gluten was somehow introduced into the dish, and my sensitive digestive tract didn’t like it one bit. I had a lovely gluten-free meal at Axel’s Bonfire last week with friends. I carefully questioned the waitress, and felt fine after eating it. Only to get slightly sick the next day. I didn’t know if it was from gluten contamination, the ice cream I’d eaten as desert, or from the MiraLAX I’d been taking for a week since finding out that my fiber supplement had gluten in. I voted MiraLAX and forgot about it. Then a few days later, after stopping the MiraLAX, I went out to eat for lunch with my mom. We carefully instructed the deli on how to prepare our salads, grabbed some ice tea, and a bag of potato chips each. A few hours later, we both knew we had a problem. By the time we had gotten home the pain was horrible. I spent a few hours in the bathroom that night and I’m still recovering. I feel so much better than that night, but I still get a stomach ache from eating just about anything at this point. Gluten-free or not, food has not been my friend lately.
Our best idea has been to get me tested for Celiac Disease. My mom was tested and was negative. But there’s still a possibility I have it. The trouble is, I’ve been almost completely gluten-free for months and to test for celiac you must be eating wheat products for at least a month beforehand. I’m not willing to do that at this point. It’s not worth it! So we’ll see what my LLMD has to say, but we desperately need some help with all these intolerances at my house now. Gluten, dairy, soy, eggs, and nuts if you count both my mom and I. Things are getting worse, what do we do? Between the nausea and the bloated discomfort I know is coming, eating is a challenge these days!
I’d like to end this post with something positive however. I’ve had a taste of normality folks, and it was beautiful. I’m not sure how I managed it, but last week I spent day, after day, with friends and family doing things I wouldn’t have been able to do only a week earlier. I had an absolute blast! It must have been 4 or 5 days in a row of eating out, playing in the park, movies, sleepovers, and shopping. My heart is brimming with enthusiasm over it. It’s all a blur in my mind, but the memories are sweet.
Peace and healing, molly