Home Forums General Discussion Update: Dermatomyositis_Pulmonary Fibrosis Cured

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  • #463815
    Parisa
    Participant

    Hello All,
    It has been a long time since I last posted. My husband became seriously ill in Fall of 2005. The doctors originally thought he might have scleroderma but as the disease progressed the diagnosis shifted to dermatomyositis with pulmonary fibrosis. His condition deteriorated rapidly and we did not think he was going to make it. His pulmonologist later admitted to us that he thought my husband had less than six months when he was at his worst. Treatment with an LLMD who prescribed IV antibiotics for Lyme and Babesia and IVig through the rheumatologists were the winning combination for his specific condition. Today my husband is physically active with normal lung function and muscles. He has been free of all medications now for over five years.

    We have been remiss in not posting a testimonial and I will be working on creating a detailed one in the near future.

    #463816
    Luck20
    Participant

    Thank you so much for your husband’s update. Its so amazing to hear these kind of stories, it makes all the difference in the world to hear something positive when your having a rough day! I love hearing drs predictions are wrong and taking a chance paid off.

    Thanks so much for the update!!

    Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
    Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

    Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

    #463819
    Parisa
    Participant

    Hi Luck20,
    It was posts like this that kept me going during the darkest moments. I hope this post will help others who are struggling.
    Parisa

    #463825
    Luck20
    Participant

    Thanks again, I really appreciate it!

    I have all the books and on a bad day, I reread the highlighted parts. I think the battle is won first in the mind. It would be easy to lose hope without all the incredible testimonials. I really am so grateful for everyone thats done them. 🙂

    Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
    Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

    Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

    #463827
    maddie
    Participant

    Amazing news! Thank you so much for posting 🙂

    Maddie

    No official diagnosis yet but probably some type sero-negative, symmetrical inflammatory arthritis.
    Started AP treatment December 2018. 200mg Minocin MR Mon/Wed/Fri.

    #463831
    Maz
    Keymaster

    Hi Parisa,

    Great to see you back and thank you for considering adding your hubby’s amazing journey to recovery to the site Stories. It’s very easy to do now by just using the automated form on the Stories page.

    Cheryl snd I we’re just chatting about your great contributions on the forum in the past and it’s very worth reading Parisa’a old posts, if you are new to this forum.

    I chatted with a gentleman last year on a regular basis and his wife was in very rough shape, like your husband, Parisa. I was able to share your husband’s story with this worried gent, and his wife also made a truly remarkable recovery from DM within about 14 months. It was rocky in so many ways for them, but she persisted and they considered her to be in full remission when we last talked. I was hoping they’d post her Story, but they haven’t got to it yet.

    Luck, very wise words! “The battle is first fought in the mind.”

    #463833
    Parisa
    Participant

    Hi Maz,

    So glad to hear that another DM patient has been able to recover. Perhaps, like me, they don’t want to post too soon and then as time goes by it becomes harder to do.
    Parisa

    #463839
    Cheryl F
    Keymaster

    Parisa~

    Good to see you here. As Maz said, she and I were talking about you on the same day you posted this. The synchronicity of your post is quite remarkable.

    I am so glad to learn that your husband is well.

    I had brought up your husband’s case in chatting with Maz as I was in a conversation with an individual with lung involvement and on oxygen, they thought it was too late for them to have antibiotic protocol help. I know your husband was quite ill in the beginning. So glad to hear that is behind you.

    Thanks for coming back to say hello, I look forward to seeing his story of recovery!

    ~Cheryl

    #463840
    Parisa
    Participant

    Hi Cheryl,
    I remember your daughter was a little further along in treatment when I first started reading your posts. Reading about her progress encouraged me to keep pushing to get the right treatment for my husband.

    #463842
    Pinkmoth
    Keymaster

    Great news! Nice work to both of you on finding the way back to a healthy life. We all know its such a struggle and are proud of you!

    Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
    Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
    Meds: minocycline (Zydus generic) 100mg 1x daily,
    Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidin

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