IVs and Life.

It’s been awhile since I’ve written a post to simply update everyone on treatment and how things have been (at least, physically). I figure it’s about time. Where to even start though? In the spirit of a true Lymie (cute nickname for patients suffering from this awful disease, huh? – it gives us some camaraderie), I don’t remember everything I’ve told you guys so far. I figure I will just start where I want to. Please feel free to ask me questions in the comments section (or email me) …especially if I leave something out that you are curious about. Despite what you may have heard, I’m pretty approachable …I promise. 😉

In any case, get ready for some excitement – I’m sure you can hardly contain yourself!

I have Lyme disease. I know, I know, “Tell me something I don’t know, Desiree.” Well, what you may not know is that I also have Bartonella and Bebesia. You see, ticks are known amongst the Lyme community as nature’s dirty needles. And so, when someone contracts Lyme disease, they often contract other bacterial infections …or parasites …or viruses. These are commonly referred to as co-infections. Don’t let that fool you though. Although “co-infection” may seem to imply that these infections are somehow secondary to Lyme disease, I assure you that they are not. They can cause just as much (if not more) damage. They can be just as hard to treat. And, they can also bring about a suffering you might not think possible. Oh, and one more thing I should mention is that it is most definitely possible to catch a “co-infection” without actually catching Lyme disease.

I was just diagnosed with one of these co-infections (Babesia) several months ago. I’ll give you an over-simplified run down on what Babesia is (mostly because, like Lyme disease, it is unbearably complicated and quite frankly, I’m just too tired to do research like I did when I was first diagnosed with Lyme). Babesia is not actually a bacterial infection. Surprise! It is a microscopic parasite that lives inside of the red blood cells. Essentially, it destroys them. As a result, leaving this parasitic infection untreated can cause a lot of crazy symptoms: air hunger, severe anemia, major temperature imbalances, heart palpitations, night sweats, etc. The specific strain of Babesia I have is called Babesia Duncani. As I came to find out, it is a less-common, harder to treat (and also harder to diagnose), strain. Lucky me (insert sarcastic voice here). Actually, while this might sound like bad news to most people, to me, it wasn’t. I wouldn’t go as far as to say that I was happy about finding out that I have yet another unwanted infection plaguing my body, but I was happy to finally have another piece of the puzzle.

My main Lyme doctor had suspected that I might have Babesia for quite some time but because it is so hard to test for, and because I was already overwhelmed by the treatment for Lyme and Bartonella, we put off pursuing the idea further. It wasn’t until several months ago when my health seemed to tank (yet again) that we decided I needed further testing. I, in my endless experiences with testing and treatments, was skeptical. I didn’t want to spend hundreds of dollars (out of pocket) for yet another test that was inconclusive. My doctor assured me however, this new one was showing more accurate and better results that any she had seen before. No, it was not foolproof but no current tests are. It does however test for actual DNA of the bacteria vs possible antigen markers – so there is less room for error.

In any case, there I was, with a positive test for Babesia Duncani. That test, coupled with the adverse reaction of the last crazy pharmaceutical drug I was on, is what steered me in the current direction of my treatment. A little over three months ago, I made the decision to switch to IV cocktails and injections for most of my supplements, as well as for my new Babesia drug. Besides the weekly IVs and injections, I still probably take more supplements than seems humanly possible …but to me, it’s like taking nothing at all. I start every morning with herbal treatments, a few capsules, and a hardly drinkable sludge made from the inner contents of a dozen or so pills (my stomach can’t tolerate that many capsules at one time anymore but I seem to tolerate the liquid sludge just fine). Throughout the rest of the day, I only have to take a few pills at lunch, a few pills at dinner, and some drops at bedtime. It’s almost like I’m a real person throughout the day! I don’t even have to carry a tote bag full of meds anymore … just one little pill case gets me by.

On that note, the IV cocktails have been a huge blessing. Trust me, that’s saying something. In the past, I’m the person who has woken up on the floor from passing out during a blood-draw. Getting stuck with yet another needle is the last thing I wanted to do, let alone an hour or two of IV treatments every week …but it really has been a godsend. Not only am I able to get higher doses of medications, vitamins, and minerals, but I no longer have to eat my weight in pills every day. Another way I’m trying to look at it is that I’m also learning to overcome my fears. It’s amazing the things we are capable of enduring and growing through. Yes, there are definitely way worse things than getting stuck with a needle  …I’ve been through a lot of them. For me though, it’s a tough one psychologically. All of which is to say, I no longer pass out when I get IVs. AND, I don’t even have to lay down or put ice on the back of my neck – despite the fact that I have “difficult” veins and often have to be stuck 4 or 5 times these days. On a very rare occasion, I can even glance down at what the nurse is doing without feeling like I’m going to vomit …so that’s a win. Yay for growth!

That’s the basic rundown on my latest treatment. Where does this leave my day to day life? Well, besides all the track marks and bruising (people probably totally think I’m an addict), I look pretty normal. More than that, I have more days than not where I actually feel sort of normal …ya know, besides my pills, IVs, shots, and constant appointments. I have even been doing yoga, going on walks, lightly exercising at the gym, running errands, cleaning my house, etc. Words cannot express how grateful I am for this second chance. I am completely in awe of how far I’ve come. When I think back to this time last year, the difference couldn’t be more vast. I was at my absolute worst. I could barely leave the house, couldn’t walk on my own, could barely eat, was in and out of doctor’s offices and hospitals, and worse than all that, was plagued with hopelessness. I really thought I might die. Now, to be able to get up, get dressed, and decide how I spend my day …it brings me tears of joy.

It’s so easy to get sucked back into a mindless life though. Staying present and allowing these changes (physically, mentally, and spiritually) to take place, are probably the hardest things I’ve ever had to do (and will continue to do) …but completely worth it (see my last post ). I definitely still have bad days and am still battling. I am still in pain.I still have to rest more than a normal person should. I still have to follow my treatment path closely …and I’m still dying for the day I can eat an old-fashioned sour cream donut from Lamar’s (you can judge me – what can I say, I dream big). But really, who cares about all that? I am getting better! I’ve said those words before, halfheartedly believing them. This time, I mean them and believe them with my whole heart. I know that I am getting better! The bad days are less bad and fewer and further between. The good days are better than ever. These last few years may have been a battle, one where I have had to fight for every step I take, but I will win. Scratch that, I have already won. In fact, I’m currently working on some pretty cool career and personal goals for the next chapter of my life. There were times I doubted that I would ever get to say that again …which makes it all the more exciting! (I can’t share them with you just yet but as soon as I can, you bet I will!) On that note, I’m off to enjoy life on this beautiful day. I hope you do too. After all, today really is the only one we have…

 

“There is a plan and your soul knows what it is.” – unknown

 

PS – Look how “normal” I am celebrating my mom’s birthday this past weekend!