A few weeks ago we visited my newest Lyme doctor, after a 3 month hiatus. Some of you may have seen my Facebook post, lamenting the past year and almost wishing I had never opened this "Pandora's box" of new treatments.
It's now been a little over a year since I started seeing Dr. W in Edmonds, WA. In terms of my Lyme journey, that isn't long at all - but it was by far, one of the "longest" years of my life. I've blogged before about how difficult it was in terms of dealing with my health while still working full time and being a mom. Not only did I have some of my sickest days yet, but overall, I can't even remember having more than a week's worth of "good days".
Probably about 75% of the last year, I've felt like I had a bad flu. Body aches, deep through my muscles to my bone - from my head, through my fingers to my toes. Lethargy so intense that I struggle just walking to the bathroom. Internal temperature so sky-high that I'm sweating even when it drops to 20 degrees outside. Nausea on and off almost every single day, and a body so swollen that it hurts to touch, and throbs when I stand longer than a few minutes. It's like living an eternal pregnancy, every trimester at once. My joints are so stiff and painful that I feel like someone stuck me in a freezer for 10 years, and then opened the door and commanded me to start moving. The longer I sit, the worse it gets. But because of the other pain, I also can't stand or walk for very long at all.
Most days, I work through all of this, trying my best to mask the symptoms and plaster a smile on my face - which is exhausting in and of itself. I typically save my sick days for the worst-of-the-worst times. By the time the weekend's come - I'm so exhausted, I can't do anything but sit on the couch. People don't seem to believe me, but I seriously spend almost every single weekend of the year in my house. I don't even have the strength to run one errand. It's depressing as hell.
With that said, I've been thinking a lot about my current treatment and the direction we're going. At our first in person visit with Dr. W., he said that it would be a year before I started noticing any positive changes, and that my pain would likely be the last to improve. At the time, I had felt like a majority of my symptoms had actually subsided a great deal; my primary reason for the visit was to find someone to help tackle my pain. So while I believed that I wouldn't start seeing results right away, I also didn't anticipate feeling this much worse after a year. Add to that the amount of money we blew through over that time frame - it was all very difficult to stomach.
We actually started a financial discussion with Dr. W. back in November. He agreed to think of ways to make things more affordable, so we left the office feeling much better that day. But then in the next two months, I had been charged another $1,000. They keep my card on file for whenever they need to send me anything in the mail, or for phone appointments, etc. So at the end of January, I logged into my bank account and was astonished to see that my checking account had been nearly cleaned out!
All of that in mind, I decided to total up what we had spent so far with this Doctor, mostly out of curiosity. The number astounded me. And made me feel even more despondent. The other thing is - every time we've tried to attack a virus or infection, I've gotten extremely sick - to the point that we have to stop because I can no longer work or parent in that condition. Also - as nice as it is to not have to drive up there every month (which also meant taking a full day off work for both my husband and I), and not having to pay such an extreme amount of money each time as well, that also means I don't get in-person treatments or muscle testing as often. Which is kind of a big deal. With the lack of speed and visits, and the amount of time and money we've spent there, and how much worse I'm feeling, I couldn't help but question if this has been the right decision.
I just don't think I can live another year like the last one - both physically and financially - let alone another 5 or 10. I would hate to be another 10, 20, 30 thousand dollars deep, and have to stop because we can no longer afford it. All that time and effort and misery for nothing. There seems to be no end in sight. And knowing that I've had three Lyme doctors, who see thousands of patients from all over the world, tell me that I'm one of the worst cases they've ever seen...you can't blame me for feeling hopeless at this point.
So anyway, I decided to go into this last appointment giving Dr. W. "one more chance". I've given up on many doctors over the last 12 years, but in those cases - not only was I not getting anywhere with them, they also very clearly didn't care much about me as a patient. That's not the case with this doctor. So I laid it all out there for him.
I asked if he's seen any progress from his perspective, because at this point, I need something positive to hold on to. He read some of his notes from my first phone call with him and I was reminded of a few things I had forgotten. For instance, my chronic sinus infection that I had for 5 years straight was no longer a problem! Which is awesome, but also, although that was a symptom that really sucked, it also wasn't completely preventing me from living a normal life. In my mind, I traded that for symptoms that are much worse and ARE preventing me from living. Still, it did make me feel a little better that some things have changed for the good.
With the muscle testing, I think this was the first time that I wasn't blocked and switched - but he seemed to think that was more of a 'weird thing' for me, than a good sign. Also, all the infections and viruses he was testing as prominent issues, were not responding to meds that they usually respond to. Yet another anomaly. He also mentioned that my body has paradoxical reactions - meaning that I respond to medicine and treatments with an opposite reaction than what is normally expected. For instance, if I were to take something that is supposed to make me drowsy, it would likely work as a stimulant in my body. I've known about this for a while, but didn't know it had a name or was an actual 'thing'. More issues that make me feel like I'm an impossible case to treat.
Back to the appointment - we discussed finances, again. I think he gets it, but not completely. He said he "would give it to me for free if he could." I'm sure he tells all his favorite patients that. ;) But for now, he, like all the Lyme docs in this arena, charges an astronomical $350/hour just for his time alone. He is a compassionate guy, and I mostly believe him when he says this, but I still don't get why these doctors have to charge as much as they do. I'm betting that a lot of Lyme patients are in the same boat as me...maxed out credit cards where the interest charges are more than the high monthly payments, depleted savings, collection calls, debt up the ying yang, and all. I don't expect it for free, but come on.
In the meantime, he did go through my whole list of supplements that I already have at home (not the closet full, but at least the cupboard-full he's given me thus far), to see what my body is responding well to. He's also adding more prescriptions to the list, that are covered by insurance, rather than a bucket full of supplements. Although this doesn't always save either...just one of my prescriptions I take now is $100 a month. And unfortunately, there are certain things that my body must have. For instance, I've tried everything under the sun to help me sleep, and the only thing that even touches this problem, is $150/month. But, I do give him props for trying, and it is helping a little.
We discussed Lymestop. I told him that everything seemed to be much better after my treatment there, other than the pain, and he said he's not opposed to me giving it another shot. So, I called over to Idaho and made a "reinfected" appointment for June. I could get in sooner, but my dang work schedule won't allow it. So for now, the plan is to keep doing what I'm doing with Dr. W. on a cheaper and slower scale. I'm not sure how I feel about it. I'm not as upset about my progress (or lack thereof) before we went in, but I'm also not feeling any more hopeful that this, or anything, is the answer for me.
As a side note, I want to thank each and every one of you who have supported us along the way. Especially in the financial sense. We could not have gotten this far without you!
