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Ideopathic kidney stone former, CVID, and Vitamin D deficiency

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Old 01-28-2013, 04:41 PM   #1
Join Date: Jan 2013
Location: Montgomery, Al
Posts: 1
gflat65 HB User
Question Ideopathic kidney stone former, CVID, and Vitamin D deficiency

I just searched vitamin d deficiency and kidney stones to see if there was a link, as I had been working on an anecdotal theory that a deficiency in vitamin D had a link to kidney stone formation (maybe its just coincidental, but historically over the last three years, when I start experiencing stone problems, it links with labs showing low vitamin D). The little bit of reading I've done seems to disprove the theory, but in reading other people's posts, I thought some of my experiences might be helpful to at least some people out there(?).

All of my life, I've had issues with sinuses and stomach (GI) issues. Over the last 20 yrs, I've seen numerous gi's to no avail. Been diagnosed with everything from IBS to Crohns (had a year of treatment for Crohns...). Started passing stones about 10-11 yrs ago. For the first 5-6 yrs, I averaged 1/yr that caused the labor pains, etc. Was lucky enough to only need one removal surgery in that time (stents suck...). I live in the southeast, so its not entirely uncommon to get kidney stones down here. You figure at one a year, you'll just live with it. Just a little spice in life.

Approximately 3 yrs ago, after my ENT performed a rhinoplasty to open my sinuses up again (only to be plugged up again a month after it all healed up), I went on the Paleo diet in search of a food allergy. The ENT felt that since my scratch tests showed no welts larger than 4mm, and since both my sinuses and stomach had been problems for so long, a food allergy was the likely culprit.

A Paleo diet does leave a lot of eating options these days. When you drop high allergy sensitivity foods, the list of 'can eat' foods gets even smaller. Within two months of the diet (30 days of strict diet, 30 days into adding things back in to isolate the culprit), I started passing stones. I passed somewhere between 30-40 that year, with three surgeries (two removals and one ultrasonic blast). They ranged anywhere from no pain/didn't know I had one to three to four months of complete hell (3-4 lortab 10's a day to try to put a dent in the pain, etc). The urologist would see the stone in an X-ray, say let's see if it passes and check back at weeks end. No stone apparent at weeks end (but I knew it was still there-hard to miss a cocklebur locked in your uretor...). I'd suffer a few more weeks until I had proof (bloody urine), go back in, X-ray, wait til weeks end, nothing there, start process over again and again, etc. (4) 24 hr urinalysises later, all results point to idiopathy.

After a year of that, I finally had an incident when I had one in each kidney. The right side had descended, but the left side stone was still in my kidney, so it was not touched). Right side stones cause me to get violently ill when they hang up, on top of the labor pains. The urologist went in for the right side stone. I'd never had them removed from that side, so being unexplored territory, he ran into issues and nearly punctured my uretor. That stent he left internal for two weeks as opposed to the normal 5-7 days for the externally secured stents (while the internal stent was still miserable, I was able to function to some degree with it, unlike the externals- that and got to be put out for the removal process- worst instantaneous pain ever felt was my first removed external stent. I'd love to find a urologist that actually knew what it was like to pass a stone and to have a stent ripped from your penis after 7 days...).

Anyway, since I had at least one 6mm in the left side that hadn't moved, the doctor finally took pity on me and gave me some advice that I now swear by. Lemon juice. I drank Simply Lemonade every day that my right side uretor was stented and on the day it was removed, I (mostly) painlessly passed three small stones that I can only attribute to the acidity of the lemon juice. Since, when I feel one coming on, I start hitting the juice heavy. It isn't a wonder drug that fixes all that ails ya, but its tasty and does more than anything else I've tried for stones.

Now, while all of this is going on, my stomach issues have hit an all time high. I write a two page letter to my GI voicing my displeasure with life. He decides to do a simple blood test and lo and behold, I have a primary immunodeficiency called CVID (common variable immunodeficiency). 20 years of scopes (I'm not 40 yet and have had more than 10 colonoscopies...). I digress on my true feeling for this (western medicine is here to rape your checkbook. There's no money in cures, but there's a lot in treatment/drugs...).

So now, a simple blood test that could have been done 20 years ago shows the root cause of many of my issues. I seek an immunologist and treatment. After several months of labs to verify that I'm just not producing immunoglobulin (and not passing it in urine, etc.), I began IVIG treatments (human immunoglobulin IV dripped over 4-6 hrs, every 4 wks for the rest of my life). Within 6 months, all facets of my life improve. My sinuses got better. My stomach issues lightened, and kidney stones went from prevalent to infrequent. I still passed them, but they weren't causing me major issues with pain, etc. Had my last surgery 2.5 yrs ago (started treatment just under 3 yrs ago).

My immunologist and my urologist are loathe to link CVID and kidney stones, but at least anecdotally, the frequency and intensity of pain from their occurrence has dropped dramatically. CVID is not something anyone wants, but having discovered it and having been put on treatment has dramatically improved my life and (anecdotally, at least) seems to have reduced my frequency of major pain causing stones.

Hopefully, that'll be helpful to someone. If not, at least you're now sleepy and will get a good nights rest.

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