Home Forums General Discussion got my reports today

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  • #352517
    Conniel7777
    Participant

    Eva….

    I AM SOOOOO HAPPY FOR YOU!!! Keep it going!!!!!!!!!! πŸ˜† πŸ˜† πŸ˜† πŸ˜† πŸ˜† πŸ˜† πŸ˜† πŸ˜† πŸ˜† πŸ˜† πŸ˜†

    #352518
    Eileen
    Participant

    Great news, Eva! Thanks for sharing.
    Eileen

    #352519
    Eva Holloway
    Participant

    Went to see Dr. K. today and took my reports to her, she was very pleased that my pulmonary function test and ct-scan have shown a lot of improvements. Also that the nodule on my thyroid is shrinking. She stated that sometimes thing go at a slow pace but if you look back over the papers from two or three years, you can see the improvements. And it is true.
    Even my hands that used to be such a mess look lots better now, wearing my wedding band again. Still need more improvement with my back but the bone that was sticking out of my spine is now less visible and not as painful as it had been.
    Surprising my blood pressure was very high today so she asked me to see a doctor close to my home, which I will do this week. I never had high blood pressure. Any thoughts, what could cause that?
    Eva

    Eva Holloway

    #352520
    frhorngal
    Participant

    Congrats Eva!!! What wonderful news for you!

    RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID

    #352521
    mj47
    Participant

    Yeah!! πŸ˜€
    Fabulouso!

    #352522
    Eileen
    Participant

    Eva,

    This is wonderful. Best news on the block, and I am so happy for you.
    Eileen

    #352523
    Patti D
    Participant

    Yeah Eva πŸ˜› πŸ˜› πŸ˜›
    As a fellow cysta I am happy to see your thyroid & PFT came out so well.
    Wonderful news πŸ˜€
    Patti

    #352524
    Maz
    Keymaster

    @Eva Holloway wrote:

    Surprising my blood pressure was very high today so she asked me to see a doctor close to my home, which I will do this week. I never had high blood pressure. Any thoughts, what could cause that?

    Eva, this is such terrific news! A shrinking thyroid nodule? Whoohoo! πŸ˜€

    Re: your blood pressure…this is just surmise on my part, because there are so many variables in blood pressure. I don’t know your age, but simply getting older can cause less flexibility in blood vessels, as well as coping with inflammation (and chronic infections) for so long, but my fellow-patient guess is that your recent hip replacement probably reduced your activity levels? If your thyroid is within normal range, then it’s likely not that and could just be due to having less exercise lately. It’s also always a bit stressful going through a major surgery like that. Think you’re very wise to follow-up on this, as Dr K suggested, just to cover those corners. πŸ˜‰

    #352525
    mschmidt
    Participant

    Eva,

    That is such great news! I’m thrilled for you πŸ˜€ πŸ˜€ πŸ˜€ πŸ˜€ You are such an inspiration to so many people!

    Congratulations!

    Maria

    #352526
    Eva Holloway
    Participant

    Maz,
    I am 69 years young, never had a problem with high blood pressure, only the top was high the bottom number was actually low. that’s weird. Yes, I can not get around as much as I want to, but I am trying. Walking in the big stores again but now with my rollator so I can walk faster and shop less. πŸ˜†
    Eva

    Eva Holloway

    #352527
    Kim
    Participant

    @Eva Holloway wrote:

    Maz,
    I am 69 years young, never had a problem with high blood pressure, only the top was high the bottom number was actually low. that’s weird. Yes, I can not get around as much as I want to, but I am trying. Walking in the big stores again but now with my rollator so I can walk faster and shop less. πŸ˜†
    Eva

    Eva you are hilarious! πŸ˜† Try not to run over any old ladies or small children as you are blowing through the store. You are someone who definitely gets stronger with adversity!

    Take care…..kim

    #352528
    lynnie_sydney
    Participant

    @Kim wrote:

    @Eva Holloway wrote:

    Maz,
    I am 69 years young, never had a problem with high blood pressure, only the top was high the bottom number was actually low. that’s weird. Yes, I can not get around as much as I want to, but I am trying. Walking in the big stores again but now with my rollator so I can walk faster and shop less. πŸ˜†
    Eva

    Eva you are hilarious! πŸ˜† Try not to run over any old ladies or small children as you are blowing through the store. You are someone who definitely gets stronger with adversity!

    Take care…..kim

    I’m with Kim there – you are hilarious. Keep on keepin’ on Eva! πŸ˜€ Lynnie

    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)

    #352529
    paper tiger
    Participant

    How long ago were you diagnosed with pulmonary fibrosis and how long have you been on AP?
    Apparently my lung capacity is less than 60% and declining. They’re going to try to stick me on Cytoxan in a couple of weeks but I don’t really feel like taking it. Trying to figure out what to do… cyclophosphamide seems so yicky. Currently in mino and NAC.

    #352530
    Eva Holloway
    Participant

    paper tiger,
    I was diagnosed with pulmonary fibrosis in 2005 , had an open lung biopsy because my lungs were so swollen they couldn’t do the other biopsy. I was for 3 months on antibiotics because of the surgery and getting pleuresy ?. I started cytoxen January 2006 for one year every month, by the end of that year I refused it because I was getting sicker with my lungs, had bad coughs, hard time breathing, so they put me on Cellcept, still using high dose of Prednison, I also was put on Enbrel and within six months I started to have eye hemorraghes and getting more and more infections, fungus on my hand, feet and sinus. I asked my rheumy if she would give me antibiotics for the infection and the fungus and she said no, so I went to my pulmonary doctor and asked him for antibiotics for my sinus and the rest is history. I went look for the antibiotic and RA connection and found the RBF January 2008, I saw Dr. K and was put on minocyclin and biaxin, I was still using prednison but in a low dose and I told her I would work my way down. It took about seven months, she never made a fuss about it, and when I was done I told her I was off the Prednison. I also had to get off the Cellcept and Enbrel, that took me only three months. I am now on the brand name Minoxin and Biaxin, took some other antibiotic for a few months and also some anti-fungal antibiotic. My toenails are finally looking lots better and my hands are doing well. You can read my story on the personal history side. It is long but it has been a hard way on the beginning. Almost three years on the AP and I know I am getting better, just looking at my last lung scan and pulmonary function test has told me that.
    I am also taking NAC and Alpha lipoic Acid and has helped with my lung function. After I started the NAC I started to breath easier. I also had to do breathing excercises like inhaling through the nose, holding the breath and then exhaling through the mouth very fast, like on a pulmonary function test. You do that lying down about 5 times, once a day and then increase to 8, 10, 15 it helps to bring lots of oxygen into your lung. I still do it every evening before I go to sleep.
    Hope this helps. you can also go on:
    Eva

    Eva Holloway

    #352531
    paper tiger
    Participant

    Whew! It seems like you’ve been to the end and back!

    Thank you so much for all the info… definitely just trying to absorb it and figure out my next step.

    I’ve only heard nightmarish stuff about Cytoxan, CellCept, etc. Not sure I can bring myself to go that route.

    I keep thinking of Cheryl’s daughter Jess, who was also quite young when she was diagnosed with SD. I think she also had lung involvement? And she’s made a phenomenal turnaround, so I’m hoping for the same.

Viewing 15 posts - 16 through 30 (of 35 total)

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