savemylife

9 ms·

31.
by savemylife 16y ago
Blog update has links to my latest lab tests. Hoping to get some feedback on that, as a few folks were interested in seeing them from my original post.
32.
by savemylife 16y ago
On the contrary, constructive skepticism is always welcome. I actually have the same concern (less food in == less food out, right?) PS: never, ever, thought I'd be discussing my bathroom habits on the Internet.
33.
Save My Life: an update(savemylyfe.blogspot.com)
151 points by savemylife 16y ago|105 comments
34.
by savemylife 16y ago
"obtain all your lab results that have ever been done, scan them, and post them" Great idea. I have just updated my blog with links to scanned test results, including Celiac, which I had tested last week. http://savemylyfe.blogspot.com/20
35.
by savemylife 16y ago
OP here again. Just got back from my dr visit, armed with questions from HN. Doc is open to investigating Celiac, so he took some blood for that. He's going to recommend me to a gastroenterologist who may pursue an endoscopy/biopsy. I'm
36.
by savemylife 16y ago
This is exactly what I've been doing for 18 years. Hiring and firing new doctors, and trying to navigate "what should I investigate next?" on my own. To be fair, there were several doctors who were willing to try (just about) anything I b
37.
by savemylife 16y ago
Yes, I spent a year getting treated for Lyme by a specialist. Tons of antibiotics, no improvement.
38.
by savemylife 16y ago
OP here. Wow, just wanted to say thanks for the hundreds of comments and emails. I'm touched (and a bit overwhelmed!) by the response. There are so many suggestions that it's hard to know where to begin. I'm trying to sort through the ma
39.
by savemylife 16y ago
Tested negative for Syphilis.
40.
by savemylife 16y ago
OP here. I've been looking up symptoms and chasing specialists for years. The idea of an assistant (patient advocate) is really appealing though. That's the kind of thing I've always hoped to find in a Primary Care doc, but so far haven'
41.
by savemylife 16y ago
OP here. Just read it, and I totally agree. Now to go convince my skeptical doc to give me the shot.
42.
by savemylife 16y ago
Wow, that's really quite interesting that we both did initially better, then worse when on D. How did you get the viral/bacterial infection diagnosis? Was this lymne-related?
43.
by savemylife 16y ago
I thought so as well. My doc and I are currently locking horns over this, as my Vit D levels are normal now. Initially this doc was quite helpful (and he spotted the Vit D deficiency- definitely a novel experience for me), but now he's very
44.
by savemylife 16y ago
It's not me.
45.
by savemylife 16y ago
I have the DVD. :-) I was on antibiotics for a year.
46.
by savemylife 16y ago
Thanks rksprst. Aren't Celiac Disease sufferers usually thin, unable to gain weight? That's not me.
47.
by savemylife 16y ago
Vivtek, thanks for the thoughtful reply. That's great that your daughter has shown such an amazing improvement. I actually tried the pro-biotic, anti-candida route about 10 years ago. I remember eating lots of Stonyfield Farms unsweetened y
48.
by savemylife 16y ago
No and no.
49.
by savemylife 16y ago
The initial improvement I saw was on a 1000 IU 2x daily over-the-counter dosage from the doc. This was encouraging, so he gave me a 50K IU weekly prescription. I started to feel worse when taking this. Thought it was perhaps too much. D
50.
by savemylife 16y ago
Thanks, I didn't know about that list. (I feel slightly dangerous knowing it now). That's kind of the story of my life though- self diagnose (sleep apnea, lyme disease, etc), and then have to fight the doctors to get tested.
51.
by savemylife 16y ago
I had exactly the same suspicions, given that the symptoms started at about the same time I started spending lots of hours indoors hacking. I do in fact take daily walks, and try to time them for prime-sun hours. Unfortunately it seems to m
52.
by savemylife 16y ago
I did in fact mention MRIs, but only as regards ruling out MS. If it matters any, the "flinging" aspect comes and goes. Every once in a while I'll have that rare day when I actually have some dexterity in my hands, and it's amazing. Sadly,
53.
by savemylife 16y ago
Yes, lots of tests. Mostly normal except what I mentioned in the blog- Hashimoto's Thyroiditis (i.e. low thyroid), treated to within normal range using Synthroid and Cytomel. That and "elevated IgA". Quote from doctor: "blood testosterone
54.
by savemylife 16y ago
I can't say that I've been tested for Lupus, but I've had a battery of tests from an endocrinologist (well, a few of them, actually). He found only Hashimoto's Thyroiditis, which supposedly is under control according to my bloodwork, and an
55.
by savemylife 16y ago
I've move several times (originally east coast, Europe, midwest.) I did try getting a bit of sun, yes (15 mins daily is supposed to be enough). White, no genetic peculiarities that I know of. Had chicken pox as a kid, but not Herpes. 160l
56.
by savemylife 16y ago
I'm a programmer. Yes, 8 hours a day. I take daily walks, but nothing vigorous at the moment, as it seems to make me feel worse. In the past I did a twice-daily 2.5 mile run. Seemed to help a bit mood-wise, and perhaps mildly with the bra
57.
by savemylife 16y ago
Yes. 3 different ones. General verdict: you seem to have some depression, but not primary. They told me that anyone who is sick for a long period of time will almost certainly develop some kind of secondary depression.
58.
by savemylife 16y ago
Yes I have. It was a bad experience. I kind of thought I'd be an "interesting case" of sorts for them, but I had to fight even harder to get anyone to listen to me. That's also how I ended up having a useless (and somewhat damaging) surgery
59.
by savemylife 16y ago
I'm the OP, and it's my blog post. Posting this under an alias, but I've been on HN for a year, and I'm hoping that this community of brilliant hackers can help me get my life back.
60.
Save My Life - help a fellow HN'er(savemylyfe.blogspot.com)
455 points by savemylife 16y ago|316 comments

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