Posted 11/25/2011 2:28 AM (GMT 0)
Okay, I'm not great at putting stuff like this into words, but I'll take a shot at giving you the rundown of my story lately. Hopefully someone will be able to offer some advice, or even point out some things I may be missing while trying to figure out what seems to be taking over my body right now, and which direction I should be heading in order to get well.
So here we go...
Right at the end of August, I was out getting some exercise on what was a very hot and humid day in NJ. Probably around 95 degrees plus the humidity. So while I'm exercising, I notice that my right knee is hurting in a way it never has before. I chalk it up to just getting old and keep going. But then, I start getting this weird tingling sensation on my skin...on the tops of my forearms, and on my shins. It doesn't hurt, but it's weird, so I stop for the day. This tingling, and the sore knee, continue for a few days, along with the new symptom of mild headaches, so I make an appointment to see the family doctor. During my visit, I can tell my doc is stumped, but I threw out that I had been camping throughout New England just about a month ago. I was camping for 5 days in Connecticut, Vermont, Massachusetts, and for me there was no swimming or showering the whole trip (gross, I know). Anyway, I told the doc I was up there, and that I had Lyme disease about 20 years ago, so I suggested that maybe we should test for it now. When I had it 20 years ago, it was a cut and dry case.... very visible EM rash on my lower leg, and the doc (different doc at that point) gave me a month's worth of doxy and that was that. No blood test even done, not even a follow up test (not sure why). But I never had symptoms again, so I felt fine. This time around, I never noticed an EM rash but with the soreness I was feeling along with the pins and needles sensations, I figured... so the doc agrees we should test. The test comes back like this:
No IgG bands present
Lyme IgG WB Interp. - Negative
IgM P41 ab - Absent
IgM P39 ab - Present
IgM P23 ab - Present
Lyme IgM WB Interp. - Positive
Lyme IgG/IgM ab value <0.91
Lyme disease Ab, Quant, IgM value 1.08 (normal max .90)
Lyme Ab IgM Interp., EIA Equivocal
Doc says, looks like you have Lyme, and gives me a 2 week course of Doxy @ 200mg a day.
After finishing the 2 weeks of doxy, I feel like I'm basically symptom free for about 2 or 3 days before I start to have the skin sensations again, and now they feel a little bit like sunburn. I call the doc up about 5 days after the doxy, and she gives me a 3 week script for amoxicillin @ 3 times a daily (I honestly can't recall the dosage per right now).
3 weeks of the amox and I'm feeling fine again. 10 days after my last dose of amox, I start feeling the prickly skin, headaches, etc. all over again. This time the doc insists that I see an infectious disease doctor and does not give me another prescription. I schedule the appointment, and it's 2 weeks away at that time. So by the time I see the doc, it's now a little over 3 weeks that I'm off abx, and my symptoms are basically the same.
I go to the infectious disease doc, and I spend some time painting the whole picture in chronological order as best I can. The doc just patiently listens while I explain my symptoms, the camping trip, etc. Then when I'm finished, the doc looks at me and says very confidently "well, you don't have Lyme disease." I'm shocked. She then goes on to explain the basics of what Lyme disease is, and the bacteria that causes it, and then tells me how the test looks for antibodies which are produced specifically linked to Lyme disease. She then tells me quite confidently that my test is a false positive. She recommends that I promptly see a neurologist, and throws out the possibilities of CFS, Fibromyalgia, and Multiple Sclerosis, along with a few others. She tells me that we'll do a follow up Lyme test just to confirm, and I have my blood drawn that day and make an appt to come back to review results in two weeks.
At this point, I'm floored. I go home and tell my wife, and she's floored. How could this not by Lyme? we think. I'm also thinking, do I have MS?
Fast forward one week, and my symptoms are worse. I now feel achey all over, and a little like I have the flu, but without any fever (I never get fevers). I call the infect. dis. doc's office to tell them I feel rotten and that I'm supposed to be going away for the weekend the next day, and they offer to push my appt. up to the next morning. At the appointment, the doc comes in with my current lab results, and they are:
Lyme Ab IgG no bands present
Lyme IgG WB Interp. Negative
Lyme Ab IgM
IgM P41 Ab Present
IgM P39 Ab Absent
IgM P23 Ab Absent
Lyme IgM WB Interp. Negative
The doc says, negative. "So your first test was in fact a false positive." She once again recommends I see a neurologist.
I was in such disbelief, as was my wife, that I made another appt with an infectious disease doctor at Penn Medical in Philadelphia just to get a second opinion. But I also did make an appointment to see a neurologist, only problem being that the ID doctor appt isn't until December 7th, and the neurologist appt isn't until December 20th! Meanwhile, my symptoms are driving me crazy.
Here's one more twist to this, which I should mention. AFTER I went to that second ID doc appt, I was at home and I just happened to brush my hand through my hair when I felt this sore spot right on the top of my head. I noticed that it hurt and that there was a little bump there. I ALSO remembered my wife yelling at me a month earlier for picking at the very same spot on my head because it was bothering me back then too. Well this time I asked my wife to part my hair and look at it to see what it was. She looks and says "oh my god, you have an open sore there and there's all flaking skin there too." We took pictures of it, because at that point I'm remembering that that thing was there at least a month earlier but for whatever reason I never connected it with what was going on with me. I guess because the last time I was bitten in was in such an obvious spot on my leg that I just never thought about checking my head....which is stupid, I know. Was this the smoking gun?
So at that point, my next appt with the ID doc is about a month away. I didn't feel great about waiting another month without any treatment if in fact I do have Lyme and the test wasn't accurate. So I called my family doctor and explained the situation. She pulls up my records and sees that the ID doc tested me and the test came back negative, so the family doc doesn't feel comfortable giving me more abx. Instead, the family doc offers to call the ID doc at Penn the next day to see if she could get my appt pushed up to a sooner date. She calls me back the next night and says no luck getting the appt date moved up, and she surprises me by giving me a script for doxy for right up to my appt date. That was a week ago. Now, I've been taking the doxy for a week, and beginning a couple days ago, I feel awful. Skin sunburn-like sensations on my lower legs, my forearms, my shoulderblades, headaches, crampy and achey calf muscles, occasional electric-like sensations on the back of my head and sometimes on my arms, and I'm lightheaded almost all the time.
Today was Thanksgiving, and I couldn't enjoy it at all. I miss being able to enjoy my family, and I feel like I'm lost here. Like I have no idea what I may be facing, and I barely know how to proceed. Am I going in the right direction with the doctors??? I don't want to waste time, and god knows it takes so much time to get these appointments with specialists.
Sorry for the long post. If anyone could offer any advice, or just some helpful insight on what may be going on with me, I'd be very grateful. Thanks for reading.