That’s what I’m in right now. Total disbelief. Two months ago, I was making plans. I was about to do some really cool stuff. I was happy with the state of things, and I was ready for the next level of My Awesome Life.
I updated this blog from the hospital a while ago while I was still in the “in shock” stage of my new and current reality. I woke up on 5/6/12 and was too weak in the legs to walk. I had to be carried to the car, and subsequently, to the emergency room. I was admitted to the hospital and subjected to a barrage of tests, all of which came back normal (and the ones that didn’t were dismissed as “lab errors”). I was discharged after nine days and sent to inpatient rehab so that I could re-learn to walk, and I was given a simple diagnosis: I was making the whole thing up to get attention/sympathy.
In my eleven days in rehab, I did re-gain the strength to walk with the assistance of a cane, and I was discharged with the hope that whatever this mess was would clear up on its own as long as I adhered to physical therapy. Fortunately, I also had a psych evaluation, which gave enough evidence that I was not simply creating this disaster on purpose.
All was going well for about a week, and then things took a turn for the worse. I’m now mostly getting around in a wheelchair, as walking across a room simply fatigues me to the point of needing to lie down. My eyes are inflamed, and my vision is intermittently blurry. My whole body is in searing pain, and the fatigue is crippling. I will not go into the details of all my digestive woes, but they are plentiful. I had a follow-up with a neurologist last week, and he confirmed that there is absolutely nothing wrong with me, neurologically speaking. That’s ok, the next referral is to a rheumatologist, so I’m not done searching just yet.
Before anyone says anything about it, I have a history of lyme disease, and this doesn’t fit anything I’ve experienced with lyme up to this point. I’m not a doctor, and I can’t say for sure, but I don’t want to assume it is that until all other avenues are explored. The treatment for lyme is incredibly taxing, and I’m not sure how many more times my body can handle it. I don’t want to go through it if it’s not what’s causing all of this. Plus, any of you out there who have lyme… well, you know what it’s like to be mistreated and laughed at by the medical community. I obviously have to mention it to every doctor I see because it’s part of my history, but I’m sure it’s only adding to everyone’s impression that I am a total whackjob. Frustration station.
I can deal with whatever this is as soon as it can be explained to me. I’m no longer satisfied with “well you’re probably not dying, so it will just get better on its own if you be patient and think positive.” I need answers for myself and so that I can give my job some sort of reasonable expectation of when/if I will be back. I am a determined individual, and I refuse to give up, but someone’s gotta throw me a bone here. I’ve got stuff to do!
I’ll try not to rant about this situation very much, but sometimes, it’s just better to write it down so I’m not taking it out on the people who love me.
What do you think? After rheumatology, should I just assume it’s lyme and press on? Any other avenues that might be useful?
Normal is the New Weird 
Sorry to hear what you went through in the hospital! It’s really terrible to be blamed by doctors for your unexplained symptoms. It’s not our fault when they can’t figure out what’s happening to us! Since you had Lyme Disease before, I’m guessing you’ve probably been tested with a Western Blot, which is not usually helpful to show whether you’ve relapsed (or possibly been bitten again and reinfected) because it just shows bands. There’s another test for Borrelia burgdorferi (Lyme) called a C6 antibody test. It’s different from the Western Blot because you get a titer (that shows the amount of antibodies you’re producing). My doctor likes to use this test to follow patients who’ve had B. burgdorferi infections. The idea behind this is that if you get the test every few months, and your titer goes up, you can tell that the infection is getting worse and you need more treatment. I’m not sure why more doctors don’t use this test to follow patients’ progress long-term. It’s been used in some important research studies like this one: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1235797 and the Rhesus monkey study published in January 2012. I know that Quest Diagnostics offers this test, and I found the test code (10672X) on their website. I’m sure some other labs probably do it too. I hope you get the answers you’re looking for.
Thanks for the heads up about that test! I haven’t actually heard of that one before. I will ask my LLMD about it and see if it might be helpful. I want so badly to get better and I feel like I have to be taken seriously first. Thanks again for the tip and the thoughts!
I don’t have Lyme disease. I have polyarteritis nodosa, a rare form of vasculitis, also hard to diagnose and I can really feel your frustration. Hope you make out okay.
Thanks for the support. It’s sure a crazy-messed-up-journey, no matter what the chronic ailment is. I feel for you and hope you also make it out okay. Hang in there!