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  • #375207
    JustDiagnosedChris
    Participant

    I have no idea what is causing the recurring kidney stones. And thank you for remembering! You know, I also am not convinced that I haven’t been suffering from chronic lyme this enire time. I know I tested completely negative on the Igenex, but, that doesn’t rule it out, I realize that. I saw a neuro-opthamologist today that wants me to stop taking minocycline, as it’s making my eye problems worse, and pursure a different sort of treatment for my condition. I want to take a break from mino as well, and see if the hematuria and kidney stones go away. I also have had DILE now for about 8 months, maybe more. That could also contribute to kidney issues, and that’s my main reason for wanting to either try Doxy or to take a several month break and then look into chronic lyme once again.

    #375203
    JustDiagnosedChris
    Participant

    I’d say the symptoms I have out of those are raynauds and stiff joints…but mostly just cracking joints not super stiff. I don’t have swollen fingers or really much heartburn

    #375179
    JustDiagnosedChris
    Participant

    keep me updated

    #375094
    JustDiagnosedChris
    Participant

    I had bacteria in my urine but not an “infection”. Whatever that means. I have had one terrible UTI 4.5 years ago that nearly killed me. Was peeing solid blood and skin (sorry graphic) for 8 days.

    I am on macrobid right now. I was on cipro for that UTI that I had 4 years ago. It gave me some adverse effects but I made it back to normal. It really really sucks because if I am going to have to deal with kidney stones and urological issues for the rest of my life, then I really don’t wanna take cipro or drugs like it. Are there any other heavy duty antibiotics that can be used? Or do I have to choose between suffering side effects or dying of kidney infection-turned-sepsis?

    #374953
    JustDiagnosedChris
    Participant

    I need to ask him, I’m sure he has but I will double check. Or maybe I’ll have my GP check since I can’t see Dr. F until august

    #374951
    JustDiagnosedChris
    Participant

    My stones are calcium oxalate/calcium phosphate

    #374954
    JustDiagnosedChris
    Participant

    I saw this on inspire earlier today

    #374949
    JustDiagnosedChris
    Participant

    All my kidney function tests are totally normal

    #374938
    JustDiagnosedChris
    Participant

    To add to Richies comment, that doc in riverside is personally my doc. Just saw him yesterday. There was an article about him and his patients in USATODAY about 15 years ago. He’s the best there is. And oddly enough, I ended up moving to riverside county just a few months before I found out I had SD. If you want any info on him I can help you out. P.S. my doc is a real certified rheumatologist as well.

    #374931
    JustDiagnosedChris
    Participant

    Another note, my GP is a very prominent doc here in riverside county. Well known and respected. He’s all for AP. He thinks that since he sees it working that its way better than taking the crap that doesn’t even try to reverse the disease.

    #374930
    JustDiagnosedChris
    Participant

    “no one has been able to replicate the work of Dr. Trentham”… baloney! How about the hundreds of patients who docs like mine have years worth of records and recorded progress of getting better? You sound like I did 11 months ago, all skeptical and whatnot. The bottom line is AP reverses fibrosis in Scleroderma. The antibiotics counter the over-production of collagen. My heart and a really messed up beat. It wasn’t even consistent in how messed up it was. For 8 years straight! In 6.5 months mt heart now beats as normal as it has in 8 years. And the raised brown skin I had on my legs is totally gone. The morphea in my arm, softened with tons of hair. My energy is coming back. I think your “specialist” needs to specialize in something else. I had calcinosis on my left ring finger. It disappeared in 2 months on AP. You gotta give it time. 7 weeks ain’t nothin!

    #374857
    JustDiagnosedChris
    Participant

    About 10 years ago, my first abnormal ocular symptoms showed up. I started getting what I can best describe as the residual visuals you get after a camera flashes at you, only it would just happen out of nowhere. Then at age 17 I was diagnosed with an increase in intraocular pressure. I had been wearing glasses since age 11, mind you.

    Around age 18( or 19) I began to see clear lines in my vision, like if you can just imagine transparent lines through your vision. Then I started getting night blindness, as well as halos around most every light I look at. At age 20 I noticed that those transparent lines are now constantly in the lower outer corners of both of my eyes, like curved parallel lines. This happened for the first time after taking some blood pressure medication.

    I also deal with this constant build up of stringy gooey stuff in my tear ducts, like constantly. And my eyes are always dry feeling. Also, my pupils are very small all the time, much more than they were as a younger person. That’s all of the eye symptoms I’ve had.

    #374889
    JustDiagnosedChris
    Participant

    I understand what you mean perfectly.

    #374886
    JustDiagnosedChris
    Participant

    Interesting! Thank you! I still am not totally convinced that I don’t have a long standing infection from ticks. I would love to get to the bottom of this one day soon.

    #372464
    JustDiagnosedChris
    Participant

    So,

    Since starting AP on July 31, 2014 I have made the following improvements.

    No longer have a severe heart arrhythmia that I had for 8 years prior to starting AP.
    Morphea has softened and hair is now coming through even the brown patches that used to be hard.
    My beard is growing in better and some of the bald spots that showed up have gone back to normal.

    The only complication is that I am still constantly being monitored for clinical symptoms of drug-induced lupus. I might ask Dr. F. about switching to a different antibiotic.

    And I seem to be getting lots of kidney stones. Not sure if it’s due to the chelative nature of the Minocycline with calcium or not. Hope to figure that out soon.

    Raynaud’s hasn’t improved yet, and glaucoma hasn’t either.

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