Home Forums General Discussion Anti-Scl-70

This topic contains 8 replies, has 4 voices, and was last updated by  richie 2 years, 4 months ago.

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  • #308771
    JustDiagnosedChris
    Participant

    My disease has had extremely slow progression. I am getting close to 9 or 10 years since I first started getting symptoms. Dr F says I have “morphea” not systemic diffuse scleroderma. I read on wikipedia that 10-18% of cases of CREST scleroderma can present with Anti-Scl-70 antibodies. I have virtually no skin involvement even after all these years…does this mean I was lucky enough to get lcSSc instead of diffuse? I have never heard of such a slow moving diffuse scleroderma.

    #375202
    greypilgrim256
    Participant

    It is definitely possible that you can have limited sclero with Scl-70. It is also possible that you can have a very mild case of scleroderma as well. This disease comes in all shapes and sizes and can be very mild for some and can possibly resolve on its own and go into spontaneous remission or go full steam and be life threatening within months. One of the reasons it is such a frustrating disease for doctors.

    Here is a good diagram from Johns Hopkins and how they interpret antibody types and how they relate to diffuse vs. limited. You can see that SCL70 can most certainly be limited.

    http://www.hopkinsarthritis.org/physician-corner/rheumatology-rounds/round-30-selected-topics-in-systemic-sclerosis/

    Also, Morphea generally does not produce antibodies and is more of skin disease, whereas SYSTEMIC sclerosis is affecting the entire body, although I suppose anything is possible. Do you have or have you ever had Raynauds, heart burn, painful joints, or swollen thick fingers? Along with antibodies those are essentially THE main symptoms of systemic sclerosis.

    #375203
    JustDiagnosedChris
    Participant

    I’d say the symptoms I have out of those are raynauds and stiff joints…but mostly just cracking joints not super stiff. I don’t have swollen fingers or really much heartburn

    #375204
    Maz
    Keymaster

    @justdiagnosedchris wrote:

    I’d say the symptoms I have out of those are raynauds and stiff joints…but mostly just cracking joints not super stiff. I don’t have swollen fingers or really much heartburn

    Hi Chris,

    You’ve also been on mino for a year now, so perhaps your SD symptoms have been kept in check with AP? 😉

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #375205
    greypilgrim256
    Participant

    If you first started having symptoms 9 years ago, it is a definite possibility that your disease has plateaued long ago. It is not unusual for sclero to be aggressive for a few years and then calm down on its own. Is it possible that your SCL-70 is a false positive? Have you had your antibodies checked more than once?

    #375206
    Maz
    Keymaster

    Chris, I recalled you saying in May you’d had some significant improvements this past year since starting AP, but wondering how your kidney stone issue was going and if you’d got any answers on that? Did you make any changes in your protocol?

    viewtopic.php?f=3&t=11061&p=79930#p79930

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #375207
    JustDiagnosedChris
    Participant

    I have no idea what is causing the recurring kidney stones. And thank you for remembering! You know, I also am not convinced that I haven’t been suffering from chronic lyme this enire time. I know I tested completely negative on the Igenex, but, that doesn’t rule it out, I realize that. I saw a neuro-opthamologist today that wants me to stop taking minocycline, as it’s making my eye problems worse, and pursure a different sort of treatment for my condition. I want to take a break from mino as well, and see if the hematuria and kidney stones go away. I also have had DILE now for about 8 months, maybe more. That could also contribute to kidney issues, and that’s my main reason for wanting to either try Doxy or to take a several month break and then look into chronic lyme once again.

    #375208
    Maz
    Keymaster

    @justdiagnosedchris wrote:

    I have no idea what is causing the recurring kidney stones. And thank you for remembering! You know, I also am not convinced that I haven’t been suffering from chronic lyme this enire time. I know I tested completely negative on the Igenex, but, that doesn’t rule it out, I realize that. I saw a neuro-opthamologist today that wants me to stop taking minocycline, as it’s making my eye problems worse, and pursure a different sort of treatment for my condition. I want to take a break from mino as well, and see if the hematuria and kidney stones go away. I also have had DILE now for about 8 months, maybe more. That could also contribute to kidney issues, and that’s my main reason for wanting to either try Doxy or to take a several month break and then look into chronic lyme once again.

    Chris, if like me, you are one of the schmucks who can’t use mino due to a confirmation of DILE, it’s really not a good idea to be on mino. Equally, if you think mino is causing your eye and kidney stone probs, doxy probably wouldn’t be a better choice, as they are both in the same class of abx. This is something you should discuss with Dr. F., because it’s really surprising he’d keep you on mino if he was worried about DILE. He does use other classes of abx, too, so you could ask about switching to a macrolide (e.g. biaxin or azithromycin) for a while to see if this helps. I think you said you had a confirmed test for bartonella? Is my memory right on that? If so, bartonella can definitely affect vision and cause eye probs, so you might want to pursue this angle and see if other classes of abx might be more suitable for you.

    Take a look at the following medical case study and see if anything is familiar:

    http://webeye.ophth.uiowa.edu/eyeforum/cases/36-CatScratchBartonella.htm

    There is a rheumatologist LLMD in MD, who specializes in bartonella and rheumatic manifestations of this and Lyme disease, if you get to the stage of looking further.

    Hope this helps, Chris.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #375209
    richie
    Participant

    Limited scleroderma or CREST is a misnomer just as dangerous as diffuse just no skin involvement – that is the major difference because in CREST when the vascular involvement affects kidneys and lungs -the name changes to systemic -very often CREST changes into diffuse —I am puzzled- morphea by its definition is skin involvement
    richie

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