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  • #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!

    #466406
    PhilC
    Participant

    Hi Roberta,

    If anyone else has any advice or ideas I would be most appreciative. Thank you!

    Are you taking any medications or supplements to address the inflammation?

    By the way, I am not surprised that the vaccine caused your RA to flare. I caught COVID-19 a year ago (almost as soon as it got here), and now I am dealing with RA in my hands and feet that had been gone for about 30 years.

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #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.

    #466409
    Roberta
    Participant

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

    #466419
    PhilC
    Participant

    Hi Roberta,

    I noticed that you are taking a rather high dose of vitamin D. Were you aware that vitamin D can make your inflammation worse? I did not supplement with vitamin D for many years for that very reason. And the few times I did take it during that period, I always noticed an increase in the level of my pain the following day. Also, too much vitamin D can cause your eyesight to become worse. I learned this from personal experience.

    I take vitamin D now, but not a lot. I get 250 I.U. per day from my calcium supplement, and I take 400 I.U. per day, five days per week. That’s an average of 536 I.U. per day. If I take much more than that, it gives me side effects.

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #466420
    Maz
    Keymaster

    Phil, that’s a very good point! Roberta, do you get your levels checked regularly? I also take 5000iu but throughout the year I adjust it to keep my (25-OH) levels between 60-80 ng/ml. Anything higher and I get severe shoulder and hip pain (like capsulitis). If levels get low, everything gets worse. There is a very fine balance with this, I find, and it seems especially intertwined with thyroid levels. I always have to lower my Vit D3 in the spring/summer to 5000iu every other day and then increase in fall/winter to 5000iu 6 days per week. Many rheumatics seem to have chronically low levels of Vit D and will absorb differently (may depend on brand and/or gut) so regularly checking levels is quite important. My endo wants it tested every 3 months (my insurance is another matter 😕).

    An additional thought re: blurred vision. Prednisone and cortisone injections (especially with chronic use) may also cause eye pressures to increase and this can alter vision (as can thyroid hormone imbalances).

    Phil, so sorry to hear you had a run-in with the virus. Have you been able to try any of the therapeutics?

    #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!!

    #466422
    Lynne G.SD
    Participant

    Hi Phil;
    Glad to see that I am not the only one that had problems with vit.d.Dropping it low enough to lower my D1-25 is what got me on the road back.Only learned about it when I stumbled on to the Marshal Protocol now known as MPKB I think.

    #466423
    FayF
    Participant

    Hello Roberta,

    Thank you for coming back to report on your progress. I am new here and read as much as I can on this beautiful forum. I have not been officially diagnosed but I believe I have RA. My symptoms came on very bad after having very mild COVID. Currently I am not on any medication. I am mostly using diet to alleviate symptoms. Maybe you can get on a specific diet for a while to give your body a chance to recuperate?

    I have noticed one of my triggers is potatoes(sweet and white). I have digestive issues and get pain when I eat. Potatoes make me feel great when I eat them. But in the evening when I sit, I feel something coming from the base of my abdomen and invading my throat, eyes(blurry vision), my nose gets cold, flushing in cheeks and headache/brain fog as well as swelling(hands,chest,knees).
    I thing keeping a food diary is vital!
    Good luck. Please keep posting so we can see your progress! Hope you get better!
    Fay

    #466432
    PhilC
    Participant

    Hi Lynne,

    Only learned about it when I stumbled on to the Marshal Protocol now known as MPKB I think.

    Actually, I think it’s still called the Marshal Protocol. MPKB stands for, I believe, “Marshal Protocol Knowledge Base” (though I could be wrong about that).

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #466441
    Linda L
    Participant

    Many scientists call vitamin D a hormone. My level was 58 and GP told me to take 1000 units twice a day. My breasts started to feel sore so I stopped taking so much and now I take 1000 twice a week only. Also a friend of mine, a keen gardener who spends nearly everyday outside has a lower level of vitamin D than I have. There must be something wrong about our science or…. Sun?

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

    #466443
    Lynne G.SD
    Participant

    Linda,
    Google MPKB>ORG It will explain how D25 can convert into a very high 1,25 causing problems.My sister did extremely well on it and after a couple years only needed Benicar to sustain her remission.

    #466445
    Linda L
    Participant

    So supplemental vitamin D tends to be immunosuppressive. Thank you Lynne.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

    #466454
    Lynne G.SD
    Participant
    #466505
    lynnie_sydney
    Participant

    Hi all,
    Haven’t been here for quite some time. My Palindromic RA/RA has been well managed and virtually dormant for about 10 years, with just one flare about 6 years ago post a very strange and nasty flu (similar symptoms to COVID-19) that sparked alot of flow-on issues.

    I am on a pulsed regime of 4 abx MWF. I had my first Astra Zeneca COVID jab about 5 weeks ago. No major immediate side effects. Then a flare in my hands and wrists about a week later – very similar to the first symptoms I got around 40 years ago. I remember an instruction from my AP Doc a few years back – so I did a 5-day straight regime of the abx which seemed to work.

    A conventional physician I know (who is open to some alternative practices) did say to me that vaccines can change the microbiome, hence the body’s response to various things, including medications. I am hoping that the 2nd jab won’t push me further down the rheumatoid path, having had so much success in controlling it.

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

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