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  • #466953
    Roberta
    Participant

    Thank you Phil for your response. Sorry that you have had a rough go too. I had not thought about MSM before, nor have I taken any herbs. I’m going to ask my functional medicine person about adding these. Do you happen to know where I find the info to take to this new rheumatologist about the AP protocol? Thank you again.

    #466424
    Roberta
    Participant

    Wouldn’t this be amazing!!! Sign me up!!

    #466421
    Roberta
    Participant

    Phil and Maz,
    Thank you so much for your responses. So surprised to hear how Vitamin D supplementation could cause the pain! It’s confusing because Ive always heard that in order to heal you must have levels 60-80. I have my Vitamin D levels checked every 3-4 months as Dr Franco also wants to see this. It has been 61, 63, 65, when I was taking 4000units, but last December it was 56 and Dr. F said to bump it up to 5000units a day. I’m waiting for the latest results from March to see the latest number.
    He tells me my thyroid numbers are all ‘beautiful’.
    I didn’t know about the connection between cortisone injections and vision. I’m really hoping to not have any more. The symptoms have been lessening the last few days so hoping I’m on my way back into remission.
    I so appreciate the support from both of you!!

    #466410
    Roberta
    Participant

    Yes Maz, I would love to read the final chapter!! Thank you for sending it!!

    #466409
    Roberta
    Participant

    Oh, and also, 100 billion flora max probiotics, and 500 chelated magnesium at night.

    #466408
    Roberta
    Participant

    Hi Phil, I am currently taking Minocin 100mg MWF, Azithromycin 250mg TTS, 90mg Armour Thyroid, SPV Active 2 3xday, Mono Omega 1300, 1 3x day, ubiquinol 100mg 1 day, VitaminD/K2 5000units 1 day, bio-identical hormones, And now I’m taking 800mg Ibruprofen 3x a day for the shoulder pain.

    #466405
    Roberta
    Participant

    I honestly haven’t. The first and only time it took the nurse 5 times to find a good vein…ouch. it also costs $135 each time and not covered by insurance so I wasn’t in a rush to try again. Maybe I will down the road. My pcp was sorry this happened and then said, ‘what about stem cells?’. I know nothing about them but will post to see if anyone has any experience with that type treatment?
    I also just started reading Chronic, so will try to see if this gives me ways to explore if I have other things going on too. Thanks Maz, I always appreciate your insights.

    #466403
    Roberta
    Participant

    Hi Max, it was 25mg and some magnesium and B Vitamins if I remember correctly.

    #466396
    Roberta
    Participant

    I only had the one and noticed no improvement.

    #466395
    Roberta
    Participant

    Just another update…I am still flaring and have now been dealing with shoulder pain due to a tear. I got another cortisone shot (it has helped only slightly) and started some PT, BUT, the pain is still intense at times and limited range of motion is a challenge. I have also noticed random tingling in left toes and a numbness in calf on and off. Also, feel like my vision is worse. Who knows if any or all of this is linked to the vaccine. I am really frustrated and wondering if I made a bad choice in getting the vaccines :(. Although relieved to know I’m now protected from severe Covid, I’m frightened that maybe I now have more than the RA??!! I keep praying that my body will get back to remission soon.
    So far I have tried a Vitamin C drip (no help at all), an infrared sauna mat I purchased, some new essential oils and added SPV Active which Dr F suggested.
    If anyone else has any advice or ideas I would be most appreciative. Thank you!

    #466374
    Roberta
    Participant

    Well I wanted to follow up. I did get both Pfizer vaccines and #1 slight fatigue, mild headache, #2 just fatigue day 2, day 3 experienced a flare involving hands, wrists, and shoulder. Two weeks later still experiencing the flare. I have chosen not to do steroids and will try a vitamin c iv drip tomorrow, possibly one each week for 4 weeks. I’m hoping this gets me back to pre vaccine.

    #465793
    Roberta
    Participant

    Thanks Maz and Linda. I’m going to ask about using Voltaren gel as necessary. I’ll let you know how I fare down the road.

    #465788
    Roberta
    Participant

    No I haven’t heard of that. Is it over the counter? I use some essential oils but the relief in minimal.

    #465786
    Roberta
    Participant

    Hi Man,

    A quick update…It turns out after staying off my left foot for 7 weeks that it was not a stress fracture but RA causing the pain. The foot doctor described something called ‘pencil in a cup’ that she saw on the X-ray (she didn’t see it at first). So I was a little disappointed that she didn’t mention anything related to the RA. Anyway, the flare continues.

    I had bloodwork again and chatted with Dr F last week. The numbers are what he described as slightly elevated and says he thinks it’s a combination herx and rebound from the Prednisone pak I took in early February. He also says the inflammation is the cause of the pain. He said to stay on the Minocin MR. He has now added Azithromycin 250mg, T-T-S and also prescribed Mobic 7.5mg morning and evening. This helps a little but so far has not eliminated pain :(. I’m so frustrated. Do you know anything about the Mobic? Does it take a while to work?

    I’ve tried to start back with a little walking (which does not feel normal) and some bike riding just to get some exercise. I’m also so torn as to which diet to follow since I feel like I eat healthily already. So many of them contradict each other…Mediterranean, Plant paradox, Medical Medium, Paleo…ugh.

    Anyway, just reaching out in my frustration…thank you!!

    Roberta

    #465668
    Roberta
    Participant

    Hi Maz,

    There is so much that you have pointed out here that I had not considered!!I never thought I would Herx again since I had already been on this medication before but I guess the lapse in taking it could be why?

    I had no idea about the possibility of a ‘rebound’ effect with the prednisone? The pack I took was 20mg but only for 6 days and it decreased the dose each day…Day 1 you took 6 pills, then 5, 4, 3, 2, 1 and then you were done.

    One thing I forgot to mention, my cardiologist started me on 20mg Crestor on February 14 (right after I finished the prednisone). I resisted for years but I have APOE3/4 and have a 50% blockage in my LAD. So I’m not sure if this could be part of my problem? She had done a swab test on me to see if I could take statins and supposedly I could.

    My last thyroid panel did the T3 and T4 as well as Free 3 and 4 and they were good. The lyme test was done twice and it was by whoever Dr. Franco used (I don’t remember). It was awhile ago for sure.

    I take Flora Max, 100 Billion but only on antibiotic days. I take Ubiquinol 100mg, Joint Support, low dose aspirin, the armour thyroid, magnesium, liver support, Vitamin D3/K2, and Mason’s immune and gut support (mushrooms) powder daily.

    I very much appreciate this input!! It’s 5:45am and I write this after waking up with whole body stiffness and concentrated pain in my hands and knees…ugh. I’ll be so grateful to get back to my painfree self!!!

    Gratefully, Roberta

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