Home Forums General Discussion Possible Scleroderma Dx

This topic contains 23 replies, has 8 voices, and was last updated by  kater 3 months, 4 weeks ago.

Viewing 15 posts - 1 through 15 (of 24 total)
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  • #461300
    Shannan_Lee
    Participant

    Hi, I was originally being “observed” for possible RA due to pain and weak positive anti-ccp. Since last visit with Dr have developed icy cold hands, gerd and dry cough. Now I’m concerned about maybe it’s not RA but actually SD. That terrifies me. SD seems sooo much worse and fatal than RA. Anybody have positive stories to keep me from getting depressed. Have you been treating your SD with Mino successfully?

    #461301
    Lynne G.SD
    Participant

    Hi Shannan;
    I had a very bad case of SD and am in full remission.I’m in my 19th year of AP and loads of probiotics.I took 200mg Teva mino but am now on 100 every day or so.Sometimes when I am super busy I forget to take it for a few days and wouldn’t you know it,I get the tingling and a bit of ache in my hands that reminds me pretty fast.
    If you are just beginning the terrible SD route you should be able to nip it in the bud quite quickly.The longer you wait,the longer it takes to get better.It took me a good 2 years to get un petrified and almost 4 to get total finger dexterity.
    Hope this help,Lynne

    #461302
    Shannan_Lee
    Participant

    Hi, what I have for diagnosis from my Rhuemy is fibromyalgia with a “ wait and see approach” if RA just happens to stop by this party, even though I am anti ccp positive. I’m going to tell him about my cold hand,stay freezing cold, even inside.

    #461304
    Pinkmoth
    Moderator

    Hi there,
    If you suspect SD at all, I think it would make sense to start AP asap…
    Diagnoses can be hard to get. I was never able to get one, but I presented a lot of SD symptoms which I agree with you is utterly terrifying.

    I started AP in August. At this point I have very few symptoms and feel 95% better. Probiotics and getting my gut healthy has been a huge part of reducing symptoms.

    But whatever you have, the sooner you start AP the less permanent SD damage you’ll have. I started when my hands had already been bad for a while but my mouth was just starting go be affected….so there is are changes to the skin on my hands that will probably not reverse (wrinkly skin due to collagen damage) but my face now looks fine and normal and doesn’t have permanent wrinkles around the lips like some people will get when they treat after the disease has been active for some time already.

    unable to receive definitive rheumatic diagnosis but likely MCTD or lupus with SD overlap. bartonella.
    mino 100mg BID
    Fish oil, NAC, bovine colostrum, digestive enzymes, Probiotic capsules

    #461306
    richie
    Participant

    Firstly -ask your doctor for a nail fold capillary test –its simple and a good marker for SD –SD is certainly treatable successfully with the use of minocycline —You should also be taking meds for the GERD as well as Raynauds –I dont know where some ideas pop up -scleroderma in most cases does not leave permanent damge and I dont know about this wrinkle business —Skin involvement in scleroderma means the skin tightens due to excessive collagen under the skin –when this collagen is dissolved due to the use of minocycline -there are no lasting effects– nor wrinkling —IN twenty years and talking to lots of folks I havent heard anything about wrinkles due to scleroderma after it goes into remission –A person gets wrinkles from AGE —-In 1999 I came down with a bad case of diffuse scleroderma -I laid out a plan –find the best doctor I could –hes now retired -I went up to Harvard to see him for 5 years or so -got much better then my local internist kept up my treatment —-its now almost 20 years -complete remission–my hands at the time were contracted due to tight skin –they are now perfect –no wrinkles –my face has wrinkles cause I am getting old —Set out a plan -get to an experienced doctor -have your local internist treat the little nasty symptoms such as GERD and cold hands {Raynauds } my internist treated this very successfully and they havent bothered me since .
    believe me you can have more lasting effect from RA than from scleroderma –I have no lasting effect at all –Good luck and know you will win !!!!!!!!!!!!!!!

    #461307
    kater
    Participant

    HI Shannan
    I would not be overly terrified but I know that is hard at the beginning. Lots of people get Scleroderma in remission with Minocycline and there are many testimonials on this site. I got my first symptoms July 2010 but didn’t get overly sick until about a year later and began Minocycline and Clindamycin in November 2011. It is now in remission and I keep it that way with 100mg of Mino per day now. Scleroderma is highly correlated with Lyme and other chronic infections such as the mycoplasmas. I tested positive for both of these and so my treatment was more aggressive with other antibiotics added. It is all under control now though. I suggest beginning AP if you can as there is not a huge benefit to waiting for a firm diagnosis. RA is often handled more gently that scleroderma though with a lower dose. It would be a good thought to get testing for Lyme through Armin Labs in Germany, or Igenex in Palo Alto though Armin has the new Elispot test which tests for current Lyme activity. Good luck to you – you are in the right place!
    cheers
    kate

    Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
    Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

    #461324
    Shannan_Lee
    Participant

    Hi. Thank you for your response. I have not been diagnosed with SD. I have chronic Lyme and was treated intensely for almost 4 years. Got 90% better. Did triathlons even. Got the second wVe about 1 year ago and have been back to LLMD to start treating. It was interrupted by serious colon issues. I’m awaiting colonoscopy and once I get the all clear I will begin the abx treatment. I have concerns that I am dealing with something more scary though. I am anti-ccp positive and being watched for RA development. No swelling or jointdamsge just painful hands and feet. Was tested for SC-70 about 6 years ago and was negative (22) st that time. I have really cold hands but no blanching or discoloration. Am I freaking out for nothing? You can be honest with me because I know I overreact when I’m scared. Thx.

    #461325
    Pinkmoth
    Moderator

    I dont think anyone here could tell you if you have SD or not, but youre probably not freaking out over NOTHING. You know your body and you know something bad is going on.
    I think if you notice stuff that seems like it could be a rheumatic disease – then sure it could very well be early SD. It seems like there is a LOT of symptom overlap between different rheumatic diseases and it’s hard even for expert doctors to make the distinctions and diagnoses (especially in early stages).

    Whether it’s SD or RA or MCTD, I think what youre doing (making moves to start abx asap) is the right call. And again I understand why youre freaking out because SD is really scary. But even if it’s SD, once you start the abx, youll probably get a lot better again -a lot of SD people get to remission with abx (like richie).

    I remember when I first got sick I was calling Maz and melting down -freaking out REALLY hard. She told me that I could relax and not to worry – she was that confident that abx would help my case. I know it seems completely impossible in such a frightened state to believe your bad situation will change for the better but abx really, really works, so try to take some comfort in knowing that there are many who have gone before you who have done this and gotten better!! 🙂

    unable to receive definitive rheumatic diagnosis but likely MCTD or lupus with SD overlap. bartonella.
    mino 100mg BID
    Fish oil, NAC, bovine colostrum, digestive enzymes, Probiotic capsules

    #461326
    Lynne G.SD
    Participant

    Hi Shannon;
    Lyme can mimic SD right down to skin hardening.It’s amazing the papers you can find on just about anything if you are in med school.While there a couple years ago I was able to e-mail some papers to myself and have them filed somewhere as I had no access to the info from my own computer.Naturally they are all in French but I was able to find some Pub Med etc. articles that were similar.When I find time to go digging I will post them for you.
    For now don’t panic about SD,it just might be your Lyme trying to come back and haunt you.
    P.S I also had/have Lyme that seems to be persistant

    #461328
    Linda L
    Participant

    Are your hands cold all the time?

    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: Oroxine, Mobic, LDN, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

    #461336
    Spiffy1
    Moderator

    So with SD your hands are cold all the time? What if it is back and forth with warm?

    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
    RA Factor 71 in Jan 2015 down to 25 as of September 2017
    DR4/DQ8 HLA...biotoxin illness
    IGG food allergy to wheat, egg, and dairy...probably all grains
    Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
    MTHFR compound heterozygous
    Igenex IGM positive Lyme, minoMWF

    #461349
    kater
    Participant

    HI
    My scleroderma is Lyme induced. I have all the classical scleroderma things–well had! — but I totally believe that it is all Lyme and myco p induced. I hope you have a good Lyme doctor. If I were you I would restart Lyme treatment as soon as you can- even if it is just herbal to start. I think this could just be a Lyme flare up and will settle when you treat again. You may need more than just Minocycline to deal with it. My lyme is under control but I remain on Mino and LDN indefinitely.
    hang in
    kate

    Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
    Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

    #461835
    Shannan_Lee
    Participant

    Hi all. I haven’t been around for a while. I have gotten back to the LLMD and started on abx but it not minocyclin. It’s cefdir. My RA symptoms got better then worse. Right now I am worse. I am going to see a Dr. on the AP list. Dr. J. H. Well actually Dr. H. no longer sees patients but I can see his PA. Okay beggars cant be choosers. The thing that always concerns me is the positive anti ccp I have. It’s like once they hear that they want to go straight to treatment. Wish me luck. I do have a question though. If all autoimmune disease results in leaky gut how can I heal my gut while I take antibiotics?

    RBFV Note: please note that it is RBF forum policy not to use full doctor names in posts to protect doctor privacy. Using a doctor’s initials is okay. Thanks for your understanding.

    #461836
    Shannan_Lee
    Participant

    Also, Can you guys advise me. My appointment isn’t for 1 month. I have minocyclin prescription ( 90 pills) that my primary wrote for me. Should I start MWF 100 mg? Or 100mg daily? I’m in pretty rough shape right now and would like to get started.

    #461840
    Spiffy1
    Moderator

    I would probably try to start with Monday Wednesday Friday at 100mgs once a day and either wait to you see your doctor to go up or change. However, if you take that okay my next move would be to add another nightly dose of 100mgs MWF and hold off on anything further for guidance. If you could get your hands on 50mgs tablets or capsules it might help when trying to titrate up. I surely hope you can get to a doctor that can help you soon. However, each body is different and it is a little of a guessing game even for the doctors. There is no magic amount or pill that works for everyone. Of course, I know you know this better than anybody. Let us know what you decide. Please keep us updated as you improve.

    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
    RA Factor 71 in Jan 2015 down to 25 as of September 2017
    DR4/DQ8 HLA...biotoxin illness
    IGG food allergy to wheat, egg, and dairy...probably all grains
    Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
    MTHFR compound heterozygous
    Igenex IGM positive Lyme, minoMWF

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