Home Forums General Discussion an update, been away for a while

This topic contains 6 replies, has 4 voices, and was last updated by  lemons 2 years, 7 months ago.

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  • #300124
    JustDiagnosedChris
    Participant

    Hey guys. I’ve been away since the start of my current semester at college. Things have been going well with my SD. I haven’t had PVC’s with my heart since December, and I took some pictures of a patch of morphea on my arm that has hair growing through it now. My raynauds really hasn’t changed at all, but I can’t have everything. I had a kidney stone around Christmas, and now I have 2 more. I am really curious about why I’m getting kidney stones as my diet has almost no calcium because I already have a high calcium level in my blood to begin with. Dr. F has been monitoring me since last fall for DILE. I don’t believe I have any clinical symptoms, unless kidney stones are a symptom, but he didn’t mention anything about that.

    I tried to attach 2 photos below taken about a month apart of my morphea patch with hair growing in it.

    #311649
    Maz
    Keymaster

    Hi Chris,

    And there you have the miracle of mino at work! Thanks for sharing your improvement pics and glad to hear you are feeling better. 🙂

    Did Dr. F. do any further testing to determine the cause of your elevated calcium levels, Chris?

    One of the interesting properties of the tetracyclines is that they bind to minerals, like calcium, in the body and is likely why it can help people with SD who develop calcinosis. Sometimes, too, SD can attack glands and organs, like the parathyroid gland, which regulates calcium levels in the body. Hopefully, the fact that your heart irregularities are now settled down (can also be a symptom of dysregulated calcium), this means the mino is doing what it’s supposed to be doing for you whether it is helping you to metabolize calcium better or for some other reason.

    Minocycline is primarily excreted via the gastrointestinal tract, which is why it can be used in patients with renal (kidney) issues (with caution not to exceed 200mg daily – http://onlinelibrary.wiley.com/doi/10.1111/j.1440-1681.1974.tb00552.x/abstract). However, it is a good question to pose to Dr. F., as to why you may be prone to kidney stones and how you can avert their development. Recall this being discussed here before, so you could try using the search box above to look for past discussions.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #311650
    JustDiagnosedChris
    Participant

    By the way Maz, I didn’t have even one of the Igenex tests come back positive. So that was quite a relief. And I’m gonna start trying apple cider vinegar and see if that keeps them from forming.

    #311651
    Maz
    Keymaster

    @justdiagnosedchris wrote:

    By the way Maz, I didn’t have even one of the Igenex tests come back positive. So that was quite a relief. And I’m gonna start trying apple cider vinegar and see if that keeps them from forming.

    Did you manage to get hard copies of the IGeneX results, Chris?

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #311652
    Lynne G.SD
    Participant

    Hi Chris;
    So glad to hear you are getting better as I was really worried about you.This disease can take quite a toll on a person,both mentally and physically
    I had a really,really great rheumy back at the beginng of the disease and she warned me that stones and ovarian cysts often are just part of this disease for a lot of people.I have had the stones for almost 20 years and the cysts for less.Neither bother me at all

    #311653
    JustDiagnosedChris
    Participant

    Lynne, you’ve been getting stones for 20 years? How do you manage with all those CT scans? They give me ct scans every time I go in. If this is gonna be part of the disease, then how can avoid all that radiation? Will drinking apple cider vinegar every day protect me from getting them?

    #311654
    lemons
    Participant

    Eating pumpkin seeds daily is said to be beneficial in warding off the formation of kidney stones.

    #311655
    Lynne G.SD
    Participant

    Hi Chris;
    I never had a CT scan and I don’t keep running to doctors very much as I can usually figure things out myself.Way back when I was havibg kidney and bladder stone pain I had a couple x-rays that confirmed things.After a few months the pain when away and I completely forgot about them until my doc decided to have an other look a few years later.Yup,they were still there and not causing any problem.I have had a couple CTs for the cysts and an ultra sound every 8 months or so.No pain so I will just ignore them .Since SDers heal very badly and a deep cut can take months to close I will not rock the boat and have them removed

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