Home Forums General Discussion Painful feet scleroderma please help

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  • #456569
    Debbie star
    Participant

    Hi, I have been on antibiotic protocol for over 4 years for scleroderma. I have had minimal success. I know I am not worse at least.
    I am really hoping someone here may have some insights to share or a story off success for their “painful feet”. I can only get around the house with difficulty as my feet are so painful and stiff to go further.(I need a wheelchair to go any further). The more I use them the worse they get. I am so limited and I feel if I could just walk a bit more I would feel a lot better on this very difficult journey.
    I am wondering if your crp and esr go back to normal eventually does the foot pain get better?
    I really dont think my issue is with a podiatrist as my extreme foot pain started about 6 years ago when suddenly all my symptoms got so much
    and my esr and crp went really high (from normal range).
    I cant seem to get my levels back down to normal range.
    Thankyou
    Debbie

    #456571
    lynnie_sydney
    Participant

    Debbie
    Sorry to hear you are not doing well. How did you go with Dr D?

    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)

    #456572
    Debbie star
    Participant

    Hi Lynnie. Thankyou for your reply. Am I able to pm you? Not sur ehow to do this in the new system
    thanks

    #456574
    lynnie_sydney
    Participant

    Debbie – received your email and will respond tomorrow. Glad you were able to make contact with some of the suggested people.

    To PM someone, run your cursor (via the mouse) over your name at bottom right. When menu comes up, move cursor up to Messages and you can select from the additional menu that will come up there – click on compose if you want to write one.

    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)

    #456575
    Debbie star
    Participant

    Thankyou looking forward to your reply, have a lovely night. I looked up the Dr and she looks quite interesting too

    #456576
    A Friend
    Participant

    Just read your post… after my being away from RBF for quite a while, though I miss all of you so much. I remembered having similar problems a number of years ago, did a search of my Word Documents to see what I might have in my files, and a copy of one of my posts on Road Back had been stored there some years ago and it showed up. Hope the information is helpful. Dr. Balch was always one of my favorite references. My foot problems have not returned. My education about acidic wastes and acidosis began with hurting feet. I could hardly walk – and then Dr. Balch’s info rescued me… for a long time being!
    [However, one thing I was totally ignorant of until the past year was the Lymph System. It’s my belief that all of us with chronic illness would benefit from learning ways to keep our lymph fluid moving — and improve our education about it by learning all the we can. The Lymph System is on par with importance of our blood system. Good luck to you and all! AF

    Sent: Wednesday, October 17, 2007 10:40 AM
    Subject: pH… Acidic Wastes and pain syndromes in the body

    Posted by A Friend on Wed – Oct 17 – 10:41am:

    In Reply to: Sun City Center, FL posted by Nancy – RA on Wed – Oct 17 – 08:56am:

    Nancy,
    When I was fairly new on AP, and had passed the time of the expected 4 months of herxheimer reactions, I was having an amazing turnaround and was feeling very well. Then I began having extreme pain in my feet and toes. After much searching and asking Dr. S in Iowa about this, he didn’t have any answers for me.
    Then, one day, while searching in the book, Prescription for Nutritional Healing, by urologist James Balch and his wife, a CCN, I stumbled across information that said if one is on tetracycline medications and one is eating meat (and I’m sure other foods in the high acidic range), that a buildup of acids can cause gout or a pseudo gout in some people. Even though my own subsequent AP physician emphatically told me my uric acid levels were not elevated, some type of acids WERE elevated!!! So, I immediately stopped eating red meat and pork — and I was otherwise already on a very strict, healthy diet. I’m not exaggerating… every day for the next 10 days, the excruciating pain in my toes when I tried to walk just day by day got better and better.
    After about 10 years now (slow learner me), I’ve finally learned that I am a slow detoxer, and my acidic waste storage level (they get stored in the tissues when our body’s can’t neutralize them and excrete them) has probably been building up in my tissues for most of my married life, as we’ve primarily had red meat, pork, and fowl as protein sources … a lot of years … as my spouse doesn’t like any forms of fish or seafood — and I’ve recently learned that Type A blood-types do not tolerate meat well at all, because of insuffient HCL and because of the reactions of this Blood Type to the lectins in food (I believe the word I read is “lectins”, but anyway the reactions have an adverse effect…will have to get back with you to verify what I read… and there are scientific studies on this … that the medical community seems to have never seen). Also, Blood type A’s, I read, would do well to practically become vegetarians.
    At any rate, after doing so very, very well for 7+ years, I’ve been in a slow, downhill “glide” since about 2003… and could find no answers to why I was feeling so terrible and was finally developing fascia and bone pain, as I was very disciplined and very rigid about doing the things I’d learned were supposed to “make it all better.” MY MISSING LINK was my own body’s reaction to acid-forming foods in my body, and my body’s inability to detox this acidic waste. These stored wastes — over especially the past 10+ years — have also caused some serious-looking changes to my bones, as shown on bone scans, etc. Fortunately, though these were definitely thought to be very serious, no tumor was found in serial CT-directed bone biopsies.
    If you are newly on AP, then a certain amount of pain, etc. is usually expected for at least 4 to 6 months — perhaps others have this even longer. If your pain continues longterm, consider learning more about this acidic waste subject. Contrary to what it seems most medical doctors say about this, it is VERY valid for many. I’ve read much helpful information by respected doctors and scientists from the Internet, and recently purchased books by R. Young, and one by T. Baroody. I would not take for what I’m learning from both of them… very indepth. However, for day to day use, I’m finding the Baroody book very user-friendly when it comes to ideas and more “simple” guides for ideas for actual use with my own food preparation.
    Good luck to you!
    AF
    Nancy – RA wrote,
    : Hi all… does anyone know of a GOOD AP doctor (or
    : AP sympathetic)around this area? How can there
    : not be one in a retirement community????
    :
    : Also, at the advice of some fellow RA’s I cut down
    : my (generic brand) mino to once a day instead of
    : twice — 100 mgs. each. I’ve been experiencing
    : more pain throughout my body since I changed the
    : dosage. Any ideas why and will this EVER go away?
    : The pain and depression is sometimes
    : overwhelming. 🙁
    :
    : Appreciate any advice you’ve got!
    : p.s. I’ve been on AP for about a month

    #456577
    A Friend
    Participant

    Just read your post… after my being away from RBF for quite a while, though I miss all of you so much. I remembered having similar problems a number of years ago, did a search of my Word Documents to see what I might have in my files, and a copy of one of my posts on Road Back had been stored there some years ago and it showed up. Hope the information is helpful. Dr. Balch was always one of my favorite references. My foot problems have not returned. My education about acidic wastes and acidosis began with hurting feet. I could hardly walk – and then Dr. Balch’s info rescued me… for a long time being!

    [However, one thing I was totally ignorant of until the past year was the Lymph System. It’s my belief that all of us with chronic illness would benefit from learning ways to keep our lymph fluid moving — and improve our education about it by learning all the we can. The Lymph System is on par with importance of our blood system. Good luck to you and all! AF

    Sent: Wednesday, October 17, 2007 10:40 AM
    Subject: pH… Acidic Wastes and pain syndromes in the body

    Posted by A Friend on Wed – Oct 17 – 10:41am:

    In Reply to: Sun City Center, FL posted by Nancy – RA on Wed – Oct 17 – 08:56am:

    Nancy,
    When I was fairly new on AP, and had passed the time of the expected 4 months of herxheimer reactions, I was having an amazing turnaround and was feeling very well. Then I began having extreme pain in my feet and toes. After much searching and asking Dr. S in Iowa about this, he didn’t have any answers for me.

    Then, one day, while searching in the book, Prescription for Nutritional Healing, by urologist James Balch and his wife, a CCN, I stumbled across information that said if one is on tetracycline medications and one is eating meat (and I’m sure other foods in the high acidic range), that a buildup of acids can cause gout or a pseudo gout in some people. Even though my own subsequent AP physician emphatically told me my uric acid levels were not elevated, some type of acids WERE elevated!!! So, I immediately stopped eating red meat and pork — and I was otherwise already on a very strict, healthy diet. I’m not exaggerating… every day for the next 10 days, the excruciating pain in my toes when I tried to walk just day by day got better and better.

    After about 10 years now (slow learner me), I’ve finally learned that I am a slow detoxer, and my acidic waste storage level (they get stored in the tissues when our body’s can’t neutralize them and excrete them) has probably been building up in my tissues for most of my married life, as we’ve primarily had red meat, pork, and fowl as protein sources … a lot of years … as my spouse doesn’t like any forms of fish or seafood — and I’ve recently learned that Type A blood-types do not tolerate meat well at all, because of insuffient HCL and because of the reactions of this Blood Type to the lectins in food (I believe the word I read is “lectins”, but anyway the reactions have an adverse effect…will have to get back with you to verify what I read… and there are scientific studies on this … that the medical community seems to have never seen). Also, Blood type A’s, I read, would do well to practically become vegetarians.

    At any rate, after doing so very, very well for 7+ years, I’ve been in a slow, downhill “glide” since about 2003… and could find no answers to why I was feeling so terrible and was finally developing fascia and bone pain, as I was very disciplined and very rigid about doing the things I’d learned were supposed to “make it all better.” MY MISSING LINK was my own body’s reaction to acid-forming foods in my body, and my body’s inability to detox this acidic waste. These stored wastes — over especially the past 10+ years — have also caused some serious-looking changes to my bones, as shown on bone scans, etc. Fortunately, though these were definitely thought to be very serious, no tumor was found in serial CT-directed bone biopsies.

    If you are newly on AP, then a certain amount of pain, etc. is usually expected for at least 4 to 6 months — perhaps others have this even longer. If your pain continues longterm, consider learning more about this acidic waste subject. Contrary to what it seems most medical doctors say about this, it is VERY valid for many. I’ve read much helpful information by respected doctors and scientists from the Internet, and recently purchased books by R. Young, and one by T. Baroody. I would not take for what I’m learning from both of them… very indepth. However, for day to day use, I’m finding the Baroody book very user-friendly when it comes to ideas and more “simple” guides for ideas for actual use with my own food preparation.

    Good luck to you!
    AF

    Nancy – RA wrote,
    : Hi all… does anyone know of a GOOD AP doctor (or
    : AP sympathetic)around this area? How can there
    : not be one in a retirement community????
    :
    : Also, at the advice of some fellow RA’s I cut down
    : my (generic brand) mino to once a day instead of
    : twice — 100 mgs. each. I’ve been experiencing
    : more pain throughout my body since I changed the
    : dosage. Any ideas why and will this EVER go away?
    : The pain and depression is sometimes
    : overwhelming. 🙁
    :
    : Appreciate any advice you’ve got!
    : p.s. I’ve been on AP for about a month

    #456581
    richie
    Participant

    Hi Are you AF from Texas–if so -super to see you posted –hope you have been well –things good with me –Best wishes Richie

    #456586
    Linda L
    Participant

    AF, how can I learn about lymph fluid moving? Could you please suggest a book, articles etc.
    Linda L

    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: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

    #456587
    Debbie star
    Participant

    Hi all and thankyou. Yes AFcould you please let us know what you did to remove the acidic waste that helped your feet pain.

    #456627
    Wendy
    Participant

    I am starting 5th month of mino and dosage this week will be 50mg a day for 7 days….slowly pulsing higher. Only since being on mino have I Experienced severe foot and ankle pain and struggle to walk my driveway or in a grocery store. Have had to have orthotics made and helps minimally. The padding on soles of feet is no longer so there are callouses and have seen a podiatrist. So very sorry you are living this and know exercise is what keeps fluids moving. Had been in remission for awhile on Cellcept, yet due to a rare dangerous side effect can not take it.
    Carefully monitor what you eat as most of us do.
    Could the ankle and top/bottom of feet pain be herxing? Hoping you will be given relief soon…4 years is a long time without relief and is the time I was first diagnosed with Scleroderma

    Systemic Scleroderma, Raynauds, Shingles 3x in right eye
    Diagnosed June 2011 on cellcept Nov. 2011 to 1st remission July 2013, relapse March 2015..cellcept to December 2015... 2nd relapse April 2016...due to possible rare side effect of cellcept..a rare corneal ulcer developed in R eye thus began minocycline May 1, 2016. Mino doseage 100mg PM, 50mg.AM daily, Levoxothyroxine 100mcg 1x a day,Tumeric capsule 450+mg 1x daily, Valium 2 1/2 mg.1x PM, magnesium 200mg 1x daily, Valtrex 500 mg.1x a day,probiotic,

    #456628
    Lynne G.SD
    Participant

    Hi Wendy;
    With only a few months of AP under your belt the disease is probably still progressing.It takes several to many months to slow then stop this freight train.Loss of sub cutaneous fat on the feet is certainly the most noticeable because of the pressure of our weight.If you look at the rest of your skin you will probably see the same thing,loss of fat under the skin but not intra muscular fat.It takes a few years to get that way and the fat never seems to come back once in remission,at least for most people.There is a theory that fibrosis feeds off the sub Cu . fat,still not proved or disproved

    #456629
    Wendy
    Participant

    Lynne, my skin score in April was a perfect 0 and Aug.22nd had risen to 10…moderate scleroderma. The progression can stop now, please! Previously had never had the extreme tightness in rib cage,calves, ankles…on and on.
    Used to walk 3 miles a day…lack of exercising is not helpful. Cellcept is slow working, yet know two very different protocols and am thankful rheum. is allowing the AP. Right now my weight is at 105 and at least stable, yet muscles have been impacted enough by flare, it is hard to stand up straight. So sorry summer is coming to a close as Raynauds and more stiffness will set in with cooler weather.
    Lynne, thanks for your information very much.

    Systemic Scleroderma, Raynauds, Shingles 3x in right eye
    Diagnosed June 2011 on cellcept Nov. 2011 to 1st remission July 2013, relapse March 2015..cellcept to December 2015... 2nd relapse April 2016...due to possible rare side effect of cellcept..a rare corneal ulcer developed in R eye thus began minocycline May 1, 2016. Mino doseage 100mg PM, 50mg.AM daily, Levoxothyroxine 100mcg 1x a day,Tumeric capsule 450+mg 1x daily, Valium 2 1/2 mg.1x PM, magnesium 200mg 1x daily, Valtrex 500 mg.1x a day,probiotic,

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