So I’m going to try to write, but I warn you it may not be the most coherent thing ever. My brain has been slightly better the last couple of days, but still pretty dumb.
I’ve been thinking lately, what a very strange feeling it is to finally be recognized as being as sick as I feel. For years I have sworn that I feel like I’m dying, but every blood test/scan/etc comes back normal, or at least “just a little off”. Not lately!
The last month has just been a deluge of abnormal tests, new diagnosis’, and things to deal with.
First, the diagnosis of a heart conditions and scheduling a pacemaker implantation (coming up in 2 weeks!! Ahh!)
Then, results of my thyroid/iron panel labs; despite being on high doses of thyroid hormone my levels are still low! What to do about that, I have no idea at the moment. My doctor says raise my dose age (again!) but I’m not so sure about that…
My iron panel is so freaking confusing…
Ferritin (storage iron)- VERY low (but my Dr says it’s ok?)
Total Iron- normal
Binding Capacity- low
% Saturation- high
So do I take an iron supplement or not?! Ughh.
Then, because I am not responding much to antibiotics (not much herxing, and not feeling better either…actually I am worse than when I started treatment) my doctor wants to give me a picc line. (This is essentially an IV, that is surgically implanted, and you use to receive IV meds in your home). This is very aggressive treatment, and tends to make people herx very badly. I agree that I need it, but I have a life! I have to work! I can’t get that sick! So we agreed to postpone this discussion until my next appointment.
At my doctors appointment she drew some blood, for a couple of different things:
1) to send to Igenex for another western blot test (the best testing option available at the moment)- still waiting for results 🙂
2) to send to a researcher at a local university who has developed his own method of testing that is said to be very accurate and reliable- he found “multiple positives for Lyme” in my blood. I definitely have Lyme disease!
3) to run a C4A test (this tests inflammation caused by Lyme or toxic mold exposure)- *3 1/2 months ago my results were 2437 with a normal range of 0-2830* Now? 21,311!!!. To quote my doctor this result is “astronomical” and “the highest she has ever seen”.
Finally, an explanation for why I have been saying for months that something is really, very wrong…and for why I have been steadily feeling worse since starting treatment.
It’s weird, really weird. For instance, this morning I saw my cardiologist, and I mentioned to the medical assistant that I was feeling pretty crappy today so she did an EKG. When the doctor walked in the room, she took one look at the EKG results and said “well no wonder you feel like crap!!” I thought I was dreaming! A friend heard my C4A number and texted me last night saying “I think you might technically be the sickest person I know…no wonder you are having such problems”. I am now *that* person that my doctor uses as anecdotal evidence for her other patients…you know, when they say “I have a patient who…”…that’s ME. (I know this because a friend of mine saw my doctor yesterday and told me that she was telling him a story of one of her patients who had a C4A level over 20,000…he said “I wonder who that could be?”)
So weird. So so weird. But really nice too.