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  • #306192
    kater
    Participant

    Hello my new friends!
    I am new to all this and have just completed my first week on AP! My name is Kate and I live in Victoria BC. I have Scleroderma which I would say is early compared to some of the stories I have read about. I got carpal tunnel and Raynaud’s a year and a half ago but the real Scleroderma symptoms just occurred at the end of May. I have been doing LOTS of alternative medicine including diet, supplements etc and my RF has dropped from 38 down to 18 so I am pleased with that. My ANA is holding at 1:640. It has taken a bit for it to sink into my bones (pit of my belly really) how serious this illness actually is so I have made the difficult decision to take a leave from work as of Dec 15 to do more intensive healing work and opening the possibility of doing the IV Clindamycin if I can even find someone to do it? I am doing oral right now, 100 mg Minocin MWF and 1200 Clindamycin on Sat. I would be willing to travel for an initial series but could not afford to do that on an ongoing basis so I need to find someone reasonably close to home. I just wrote up my SD history for Dr. S in Iowa so I will paste it below.

    July 2010–suddenly developed bilateral moderate level carpal tunnel and Raynaud’s simultaneously. Raynaud’s persist but I was able to beat the carpal tunnel with gluten/dairy free diet, physio, acupuncture, and bracing

    Fall and Winter 10/11–noticed fatigue and muscle weakness in upper arms and legs which I attributed to being away from the gym because of carpal tunnel

    late May 2011–hands swollen, very stiff, feet very stiff in morning, skin on hands tight and shiny, skin splits on thumb, ++fatigue, upper arm and leg muscle pain and burning on one flight of stairs.

    June 15/11–Saw GP and he thought I had RA. RF was 38 and ANA was 1:320. All other bloodwork is good.

    June20/11–Saw Naturopath and began very restricted RA diet–no gluten, dairy, caffeine, sugar, grains or simple carbs, nightshade veggies, starchy veggies, spices. I am trying to do alkalizing diet as well. I am still on this diet and eat legumes, soy, eggs, nuts, some fish, green veggies (tons of them) and some low sugar fruits. I felt about 75% improvement on this diet within 2 weeks. Began taking Magnesium Malate for muscle pain. Felt quite stable while off work during the summer (I work in a school).

    Aug 23/11–Saw Rheumatologist. RF was 33, ANA was 1:640. All other xrays and bloodwork very good. Sc70 and other antibody tests negative. He says I have Scleroderma based on clinical symptoms, or possibly some overlap disorder. Suggests I take Plaquenil which I refuse. My muscle pain is resolving with the Magnesium and I am able to do some light exercise again.

    Sept/11–return to work and become very fatigued and right away tight skin spreads from my hands half way up my forearms–a little worse on the right side. Request reduction in worktime to 4 days a week and finally got that approved for Nov 18! I can make it through the work day but usually sleep two hours on returning home and it is very hard to keep up with everything on the healing and home front!

    Sept 27/11–Naturopath starts me on Phytoimmune (plant sterols and sterolins) and cod liver oil

    Oct 27/11–by now my skin feels tight and pulling in my neck, chest, and a band under my upper arms, though it looks okay to others. I have first session of Myofascial Release work which produced amazing softening of all my tight skin.

    Nov. 7/11–convince my GP and Naturopath to give me AP though they don’t have a lot of experience with it. They say yes but oral only. I can’t find anyone to provide IV. Bloodwork recheck show RF has dropped to 18 and ANA steady at 1:640.

    Nov 9/11–begin AP. MWF 100mg Minocin (Steifel) and 1200 Clindamycin on Sat. Daily probiotics. I seem to tolerate the Minocin well but the Clindamycin gave me that awful metallic taste in my mouth, low energy and mood and a little nauseous still (2 days later)

    I have not had any mycoplasma testing done. I did have mycoplasma pneumonia 17 years ago when I was pregnant so not sure if that has any bearing. I have not had Lyme testing done. No known tick bites though I lived in the forest for 17 years (up until 5 years ago and there were many ticks around).

    So, that is it for me. I appreciate you being here as there are not many people I can talk to about the truth and details of all this. I am sure you know, but I have have found the diet, plant sterols to be very helpful. The Myofascial Release work was not very comfortable but produced AMAZING changes in my skin in one session.
    Has anybody had an success with acupuncture??
    Thank you to all of you for filling my inbox with light, wisdom and compassion–oh, and of course hope!
    cheers!
    kate
    Ps–one suggestion I have for the moderators is a glossary for Newbies of all the abbreviations. I am pretty well read on this but there are still lots I don’t understand

    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

    #360247
    lynnie_sydney
    Participant

    Hi Kate and welcome to Road Back Discussion Forum. You’ll get lots of support and wisdom here. In terms of abbreviations, there is a list of these (many of the most common) on our main site. To access the main site, just click anywhere on the Road Back Banner above. Here is the link: https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/157.html

    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)

    #360248
    Parisa
    Participant

    Hi Kate,

    Welcome to the Roadback. I think with your attitude that scleroderma isn’t going to keep you down for long. Will you be staying on three days of mino for long or will they be upping the dosage soon. Sclero patients usually need to take a daily dose.

    #360249
    nspiker
    Participant

    Welcome Kate,

    Wow, it sounds like you are already on top of things, and have a good plan going forward 😎 .

    I don’t have SD, but would encourage you to pursue IV Clindamycin, if it’s feasible. It still gives you that metallic taste that you’ve experienced, but is great for boosting treatment, and avoids the stomach problems. If you can tolerate oral Clindy, then you may be able to accomplish the same thing without IV’s.

    If you lived in a wooded area for 17 years, then lyme may be a possible contributor. Many SD patients test positive for lyme. I was never bitten by a tick, and yet somehow ended up with lyme. It’s something to consider as you move along in treatment.

    Many of us need to have positive mycoplasma results, to justify IV Clindamycin for insurance purposes. It may not be necessary in Canada.

    I’m interested in hearing more about your plant sterol diet. I know it’s something I need to do.

    Glad to have you join us….
    nancy

    #360250
    kater
    Participant

    Hi
    thank you all for your posts 🙂 Yes, I have been trying to be all over this SD thing right from the getgo and it has been slowly improving (except for the flare when I went back to work) since the end of June when I started the diet. Dr. S has recommended that I be on the Minocin twice daily and Clindamycin once weekly. I emailed to clarify that as it seems to be counter to what is written about the low dose and pulsing, but my belief is that is because of SD and not RA. I understand the SD is more difficult to treat. I will start increasing the dose and I understand I should do that gradually to avoid herx. Would you agree with that? I am still searching for IV, however, even though I have only been on treatment for 8 days, I woke up this morning and my hands are feeling improved and looking better, especially the left. I don’t know if it is even possible that it could be the AP or just that I have been improving but it is amazing!! I just posted a blog of my diet under MINOCINMAN’s survey post if you are interested. The plant sterols and sterolins are supplements and not part of the diet. I started on the sterolins at the end of September and while my ANA didn’t budge, my RF dropped from 33 to 18 in 6 weeks which seems impressive to me. The diet is basically an RA diet which I try to keep as alkaline and green as possible. I have an hour of myofascial release tomorrow and hope it will be as amazing as last time. Thank you all for your time and caring 😀

    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

    #360251
    lynnie_sydney
    Participant

    kater – it would be good if you could find a copy and read the Henry Scammell book: Scleroderma: The Proven Therapy that Can Save Your Life”. Also I’m reposting this post from 2010 below – which contains a post by Henry Scammell himself from 2005 and also a link to our main site re the pulsed/daily dose question.

    It is true that many SD patients are fine on a daily dose and do not seem to herx. A daily dose has tended to halt the fast progression of SD symptoms. However, there are others who have found daily dosing is not tolerable, usually those with some form of inflammation and often with SD that has been triggered by Lyme Disease. Unfortunately, it’s not a one-size-fits-all thing and can require tweaking doses to individual tolerance. I’m sure some other SD patinets will chime in with their thoughts/experience.

    viewtopic.php?f=1&t=5071&hilit=Scammell+2005

    redrock, Melinda and all, this is an old post of Henry Scammell (yes that Henry!) that I found from 2005 and posted a while back. It includes some reflections on herxing and the differences (for those who accept the infectious theory) between people who have RA and SD.

    Why Dr Brown was a Lumper Posted by Henry Scammell on Sun – Aug 14 – 5:40pm: 2005

    Tom Brown was a lumper, not because of the politics of the time or arbitrarily, but solely because he saw thousands of patients getting better on antibiotic therapy and he figured they were all improving for the same set of reasons. But the recent exchange on this topic contains a couple of misaprehensions. The concept of lumpers/splitters is particular to RA, and does not include the other connective tissue diseases such as lupus, fibromyalgia, scleroderma, etc. – although certainly Brown recognized that they all had a lot in common, especially their responsiveness to antibiotic therapy. Lumpers use the term rheumatoid arthritis generically to include all the inflammatory forms of arthritis (I think there are 106.) The rationale for this is simply that rheumatoid means inflammatory. Because Brown was virtually alone in using antibiotics for any of those forms of arthritis or for the other connective tissue diseases up to the time of his death, in those days whether a rheumatologist was a lumper or splitter had nothing to do with the AP or the infectious theory. In fact, lumpers and splitters alike held Brown, the theory and the treatment in low regard and often in contempt.
    Today the question of lumpers vs splitters has become even more politicized because it has obvious implications for the infectious theory and, to a lesser extent, the efficacy of the AP. Some 17 years after Tom’s death, the theory remains unproven. More happily, the AP has been accepted for use in RA (splitter’s definition) by the USP and the Arthritis Foundation – although it has NOT been approved for most of the other 105 inflammatory forms of arthritis. So today more than ever,the distinction is a critical one. If your doctor is a lumper and he believes the USP or the Arthritis Foundation,chances are good that he’ll treat whatever form you have with minocycline (which was available in Tom Brown’s time, by the way, and which he used – we refered to it as tetracycline because that’s what it is.)
    An apparent subsidiary to this issue is the JH reaction – doctors who doubt or reject the infectious theory obviously don’t believe their RA patients ever herx on the AP. Conversely, most doctors who do believe in the theory believe they can tell the difference between the JH reaction and a conventional flare. As for scleroderma, it’s not inflammatory, so obviously the herx, if there is one, would not present in the same way as in RA. I don’t know how a scleroderma patient would know whether he has ever had a JH reaction, or how he could be sure that he has not.
    Some years ago, about halfway between the time we wrote The Road Back and today, I updated our effort with The New Arthritis Breakthrough. As anyone who has read that book knows, it owes much to the helpfulness, insights, courage and cooperation of David Trentham . When we sat down to discuss that update, David commented that it was unusual that in the several years since Tom’s death, not a single statement in The Road Back had been proven wrong or false. We both knew we had leagues to go before the day when it could all be proven true.
    One last thought on the recent exchange: I don’t know how many of the RBF board believe in the JH reaction, and although I assume it is most or all of them, I could care less. As a loyalty test for supporters of the infectious theory, it’s meaningless.
    Okay – yet another last thought:it’s wonderful that RBF has so many good people who are willing to share their knowledge and experience and love of their fellow man, especially in the forum of this lively bulletin board. We now get something like 45 MILLION page hits a year on this site,and I’m certain most of those visitors look in on this running dialogue. Many, many thanks for all you do – whether you agree with each other or not. Keep on sharing. And keep on loving.

    Also, on our main site, there is this statement:

    https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/91.html

    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)

    #360252
    kater
    Participant

    Thank you Lynnie–that is all so helpful. I do have the Henry Scammell book and read most of it but handed it to my naturopath so he could start my treatment asap. I need to get it back and finish it! I am feeling okay on the meds except for a day and a half after the Clindamycin but hopefully I can adjust to it. I will start by adjusting to 100mg bid of the Mino on MWF instead just once a day, starting in the morning and see how I do on that. I am a bit sensitive to things so I don’t want to rush too much too soon. One thing I have noticed is that my skin above my right wrist is very sore and sensitive since starting treatment–almost looking like a bit of a bruise but I didnt bang it. Clothing is totally irritating to it. No idea what it is about but I am sure it will pass. Thank you for clearing up some of the treatment differences between RA and SD–it is all a little mind boggling at the beginning.
    with gratitude
    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

    #360253
    PhilC
    Participant

    Hi Kate,

    Intramuscular (IM) injections of clindamycin are an alternative to IV clindamycin.

    See: Clindamycin – IM, IV

    I just thought I’d mention that since they might be easier to obtain.

    Phil

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

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