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Well, my AP doc, Dr. F., told me that many patients with SD have elevated calcium levels in their blood. I had quite the scare tonite. I had a sudden(I’m talking 10 mins) onset of excruciating pain in my bladder. I was peeing blood and could barely walk. I went to the ER, they found a kidney stone trying to come out. Terrible experience. Anyone else experience this?
RBFV Edit to remove AP Doc’s full surname as per forum guidelines to protect physician privacy. Thank you for understanding! 🙂
@JustDiagnosedChris wrote:
Well, my AP doc, Dr. F., told me that many patients with SD have elevated calcium levels in their blood. I had quite the scare tonite. I had a sudden(I’m talking 10 mins) onset of excruciating pain in my bladder. I was peeing blood and could barely walk. I went to the ER, they found a kidney stone trying to come out. Terrible experience. Anyone else experience this?
Ouch, Chris! Poor you! 🙁
One thing I’m wondering about is your Vit C. Did Dr. F. talk with you about this? There is controversy about whether or not folks with SD, in particular, should use Vit C because calcium is dysregulated in this disease as he told you. The minocycline is chelative, which helps to bind to minerals, such as calcium (which is why you can’t eat anything with dairy within a couple hours of your mino dose or it just renders your abx useless in your gut) and tetracyclines are a very good thing for SDers in this respect….but the Vit C supplementation is still really on the table for discussion for this sub-set of rheumatic patients. Some SDers do just fine with Vit C and others don’t. Of course, there is good reason to want to take Vit C, because it does also help to metabolize iron in the body and to help prevent the blue-grey hyperpigmentation….but when a person is prone to kidney stones, you may want to talk with Dr. F. about dropping it and doing other things to help your body chelate. Does Dr. F. recommend any alternative chelation strategies?
I hope you feel better now and can enjoy the holidays a bit.
Hi I take 1000 mg daily of vit C—Doesnt do much for the pigmentation but sure helps with energy and warding off colds –
richieHi My calcium levels are normal -its a very easy matter to find out if your levels are high or not –its part of my yearly blood test —
richieHi Chris,
@JustDiagnosedChris wrote:Well, my AP doc, Dr. F., told me that many patients with SD have elevated calcium levels in their blood.
A possible (likely, I’d say) cause of this is the dysregulation of vitamin D metabolism caused by some bacterial infections. The current vitamin D megadose craze could be a contributing factor. How much vitamin D are you taking?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinI had 2 k. Stones obstructing after a week of fun had to have surgery to remove them this was a yr ago.
I found out a couple of things as my calcium by blood was always normal. Vit C maybe suspected but it’s complication is usually found in those who have iron storage disease also known by a longer name hemo something. There’s a list of symptoms one may have associated with this disease and it can affect a large number of Caucasians. There’s a salvia test one can do to easily determine if they are affected since the mid 90’s I fit many of the symptoms, yet no doc talked of this. I had heard of it and thought if I avoid iron I should be good and watch simple FE its not that simple. My brother has one of the 2 genes for this which means in the sibs likely one to 2 of us are affected. I got the saliva test to find out for me. If so I’ll do the TIBC blood profile and see if I need to do blood letting. I always feel better after giving blood.
I’m giving just enuf broad strokes here for one to know.
Best Jillonce I was diagnosed with scleroderma -I am no longer an acceptable blood donor -I think any auto immuine disease makes one not a donor –
Richie
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