Posted 7/26/2014 4:46 AM (GMT 0)
Hello, I just signed up because I've been looking for some support with my various conditions. It's been a lot to deal with lately. I got treated for Lyme, was feeling better, but the symptoms have been coming back, and after telling myself for a couple of weeks that I'm just being impatient, I have another doctor's appointment scheduled, and I'm trying to figure out what I should do.
I'll try not to ramble too much, suggestions and general perspective on dealing with Lyme are appreciated. My situation is somewhat complicated by having other pre-existing chronic conditions and one or two medications with potential side effects that overlap with Lyme symptoms.
I've had a problem with migraines since the fall of 2012 and treatment was not going well. I was noticing some other little things in March or April, little bits of tingling or twinges, feeling mentally slow, sometimes having trouble finding words, so I asked my GP about seeing a neurologist, and he said that made sense. The neuro switched me to Topamax in April for migraine prevention, and took me off of propranolol, which he said could be causing some of the other issues. I had some brief improvement in the other issues, a week or two of intermittent tingling in my feet from the Topamax as I adjusted to it, and I started to see some improvement with the migraines. Other things, mainly mental stuff, started to happen more, and at a followup in May the neuro said it resembled Lyme, and suggested a blood test. I got blood the bloodwork done, and it came back positive.
I started a 30-day course of doxycycline. Aches and fatigue got worse, I had also become severely depressed. I was having other speech issues, and my symptoms got worse for several days after starting the antibiotics. I started having some anxiety problems, I wasn't sleeping well, I would have muscle spasms, twitches, weird sensations. I wound up missing a lot of work as a result of it, but slowly I started feeling better, and by the end of it, I was doing ok. Not back to normal, but ok. I followed up with my GP, and he said to expect a couple of months more of recovery before I'm feeling back to normal.
It's now a month later, and I've been having persistent aches in my left arm and leg, with some tingling associated with it, for almost that entire time, worse in the last week. I feel weaker on that side, but it might just because I'm sore. I've been getting depressed again, not as badly, my mood has been fluctuating a lot. For a couple of weeks, my toes have felt almost constantly like they were in water for too long (they look fine, maybe a little pale). When I'm tired, particularly before bed and when I first wake up, I'm having twitches/jerking again (possibly psycho-somatic?). Tingling sensations have been showing up again here and there as well in the last couple of weeks. There was more yesterday and today, but that coincides with increasing my topamax dose because I've still had some bad migraines as well as a lot of regular headaches. I'm not sleeping well, I often feel slightly dehydrated, and I'm starting to have some of the speech problems again, although I've noticed that mostly after the dose increase in the topamax, and that is indicated as a possible side-effect...unusual, and I don't think it was an issue before, but it could be the higher dose. I think there's other stuff I'm forgetting, although that's another one--I've been a little more forgetful lately, too.
The other odd thing that has happened, which could be complete coincidence, is my optometrist finding glaucoma in my left eye. My left side has been sore, and my left eye has damage, causing some peripheral vision loss, to the optic nerve. Could be coincidence--I haven't had a proper eye exam in 20 years, not since I was 10 years old. She did detailed imaging, found the left optic nerve was deformed, and suggested the visual field test. Right eye was fine as expected, left eye was tested twice, and although it hasn't been enough for me to notice it, the test showed I've lost some vision. The up-shots, I suppose, are that this was caught early, so treatment will keep it from limiting my vision noticeably, and my neuro felt he could justify an MRI, although he said he's not really that concerned, but since it's an odd coincidence, better safe than sorry. Not that "get an MRI" was on my bucket list. :P
And, of course, my GP is on vacation. So I'm following up with a different doctor in the office Monday, although he's the one I saw initially about the Lyme, since my GP was either out or booked solid for longer than I wanted to wait when I got the positive test result.
Am I just being impatient? From what I can tell I had/have an advanced infection, given the range of symptoms I've experienced (I think I was bitten when walking in the woods on unusually warm days in the December/January, but I saw no rash, nor found a tick. Otherwise, I would've been bitten prior to July 2013. It's worth noting, too, that I have a lowered immunity due to being on Humira for Crohn's disease.) Should I be looking for an infectious disease specialist at this point? Is there a real Dr. House somewhere? (Princeton, NJ is not an unreasonable drive for me :P)
Thanks for taking the time to read through all this. Maybe a lot of the background is unnecessary, I tend to err on the side of giving extra information. I've felt a bit isolated while dealing with things; my boyfriend is a big help, but I don't want to lean on him too much, and a lot of my friends don't live close by, or just aren't able to help. Sometimes it's just easier to talk to people online.