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  • #461739
    Dawn
    Participant

    Richie, that is helpful when one is starting from “zero”….I’ll pass that along and thank you very much for responding!

    Best,
    Dawn

    DawnF

    #460896
    Dawn
    Participant

    Redrock, I will provide the method I am using for just the reason you point out of absorption, but please note this is not in an advisory capacity as I am not medically-trained: empty stomach accompanied with some capsulted enzymes (bromelain and serrapeptase at present) and refrain from eating at least 1 hour. For myself the morning is the easiest time to schedule this arrangement, and mine is every-other-day M-W-F.

    I am unfamiliar with Nature-throid’s ingredients that may or may not have an impact absorption.

    Warmly,
    Dawn

    DawnF

    #460871
    Dawn
    Participant

    RedLizzy, I PM’d you regarding this – let me know if you do not receive my message.

    Dawn

    DawnF

    #375172
    Dawn
    Participant

    By way of assisting:

    1. How long did you have RA before beginning AP therapy? 3-4 months
    2. What was your pain level once starting AP therapy? 8/9 out of 10
    3. Were you on prednisone when you started AP therapy? Yes, 5 mg. daily for 6+ months, then began a weaning off
    4. How long did it take for you to notice that AP therapy is working for you? 1 1/2 years from the start
    5. Does the AP therapy completely manage your pain? Are you pain free? now – yes, for 2 1/2 years or so – no, NSAIDS etc…
    6. What do you take? Brand or generic? If generic what manufacturer? If Watson, does it work well for you? Generic always due to medical coverage, varied from Dr. Reddys, to Ranbaxy, capsules and caplets
    7. If a particular manufacturer didn’t work for you, did you switch to a different manufacturer and did that one work and you finally saw results? Have not had to perform any switches.

    Best to you on your journey!Lots of help available here!
    Dawn πŸ˜›

    DawnF

    #321585
    Dawn
    Participant

    I do, she does my palms, wrists and individual fingers; has made great progress where collagen was started to settle and build. At first it was painful as she broke areas down, now I look forward to it as others do back or foot massages because I know the mobility and relaxation the come from it and last afterwards.

    Best!
    πŸ˜€

    DawnF

    #375010
    Dawn
    Participant

    Not much myself, but a post early on for (possibly similar) weakness I was feeling and a possible suspicion:

    https://www.roadback.org/forum/search.php?keywords=Overall+Weakness+-+Normal+for+Season%3F

    Not sure if that is helpful or not.

    Just FYI on that post: I stopped the plaquenil and continued with my other diet changes, etc. The weakness did not stop immediately, but did subside so I do not know if it was related to what was outlined in that discussion.

    Hoping your mystery and challenge get resolved, best regards, Dawn πŸ™„

    DawnF

    #374676
    Dawn
    Participant

    Spiffy, I would just like to add my support to the comments by others in the various adjustments on meds you’re taking.

    Additionally, depression is very present for the early period for many reasons, at least 2 being your general overall health at this early stage coupled with the miserable feeling that you’re trying to lasso a hummingbird! All I can say on the note of seeking support: do it from others who suffer the same, or similar, types of rheumatic disorders. For others in your life – even your beloved mom; just telling them your feet are very sore, your shoulder has been killing you since you got up, etc…is sufficient to usually elicit a supportive response because they can identify with that. I ride horses, I cannot begin to accurately convey the feeling to anyone who has not, or even who did not ride them on a regular basis. So I don’t try unless they really appear deeply interested, even then its alot of analogy or similes. That has been my experience.

    Lots of support from like-minded, and like-situation human beings here on this forum. You will encounter others in your day-to-day life where their 5 minute supportive conversation can last you for weeks while you go off to “lasso a hummingbird” because it proves to be some or mostly helpful instead of none.

    Please do not give up, the treatment works for many and especially those with open minds as they put the staple low-dose antibiotic in place, and move along over time to find their personal adjustments along the way with (hopefully) a caring and supportive doctor, fellow-sufferers experiences, educated and adaptable holistic professionals coupled with their own careful research. It is so worth it, and think: what’s the alternative anyway? Just let pain envelop you and do nothing? Too many documented occurrences of benefiting to go that route!

    Lots of love and hugs,
    and….Fellow RA Sufferer,
    Dawn πŸ˜‰

    DawnF

    #313867
    Dawn
    Participant

    Charming! (and how nice, the added “benny”: TRUE!)
    πŸ˜†

    DawnF

    #321580
    Dawn
    Participant

    I am still using massage therapy for my hands to counteract the collagen build-up on my palms and wrists, occassionally working on my ankles and feet. This has helped greatly in curbing deformity from build up remaining in those areas. Once in a while I get an entire body massage which assists in a general feeling of well being, but also unlocks tension-response areas, that may cause further problems as I try to compensate my daily movements around them.

    General consensus: a regular part of my RA regimen, and weighted around 10-20% of my total overall program that I am benefiting from.

    Note: Detoxing after each massage, small or large scale, is key. I make a point of including my increased Vit C intake and antioxidant foods close around my (bi-monthly) massages.

    Maybe that assists in your thinking, be well – it took a loooonnnnnnnggggg time for me to lose the shoulder pain, was one of the toughest areas and most easily flared up if I “drew outside the lines” of careful use of them (mostly the dominant side, right).
    πŸ™„

    DawnF

    #362252
    Dawn
    Participant

    Gotta say: AP is definitely making a difference in my activity level and attitude. No depressing days now at all, frustration days for the world we live in, but no depression due to the “prison of illness” that the RA had me in. Oh yeah! πŸ˜€

    So, in trying to evaluate my recovery with only taking minocycline and no other medications now, I would venture to say about 80-85% of my old self. No morning stiffness, just stiffness from cold weather or lack of movement for a time. I can crouch, jump, run (not fast), wave my arms and shake hands, and many other things that I had figured would be by the wayside when battling this for the first year and half. Still challenged with opening water bottles – but that’s a hoot as many I dearly love and see regularly have problems with those and do not have RA!

    Very excited to be down to just the mino now; always keep some prednisone on hand in small mgs. doses just in case a flare occurs. But haven’t used it for a crutch in a long time…nor did I have the horrible weight gain or moon face from the use I did make of it. By always being conscious of it as a BIG negative, I think kept me from ever leaning on it for maintenance, only assistance in emergency moments. (Can you say huge stress or goat-attack! πŸ˜† )

    Diet has now become a more primary focus of mine. Eliminating evils (sugar, white flour, lards, etc…) which still show up due to my husband’s unrestricted diet; while finding my go-to staples that not only make food taste great, but support the environment that my body appears to thrive in: garlic, onions, avocados, celery, radishes, carrots, sweet potatoes (not yams), mushrooms, glutenfree brown rice pastas, sourdough (homemade and maintained), water kefir, horse radish, spinach, kale, arugula, small amounts of meat, olives – oh! olives (not the green though for ? reason)….mangos, strawberries, blackberries, blueberries, pineapple, etc.

    Learning to cook fresh, prep fresh, eat organic mostly. All this while working fulltime and learning a new job when I had to replace my sorely stressful one.

    Kudos to all on this board along with every post GREAT or SMALL as they lent me the support at the times I’d come begging for it: whether that was Prednisone-weaning, flaring, herxing, blood testing and understanding such, personal experiences of permanent or temporary damage by RA, and even the middle-of-the-night emotional outpourings on paper (postings) which let me know how very not alone in the fear factor I was!

    Looking forward to more recovery, but it has slowed down enough that I’m not sure when the next progressive post might be.

    Hugs and warm encouragement to stand-fast and fight the fine fight to any reading this and these other related types of postings for tracking purposes, for the same reason I read through each and every one of them (eventually)!!!

    DawnF

    #373743
    Dawn
    Participant

    All – small correction: Not MSM, Glucosamine!
    My apologies, Dawn. 😳

    DawnF

    #373742
    Dawn
    Participant

    Karen,

    There was a Stanford University completed study on this item and the combination they found to be most effective (included boron and MSM) was produced by a company in a supplement form. I have been using this steadily for about 1 year now; but because it is coupled with AP and diet change – I could not definitively point to improvement from it alone. I take it for the “supportive” protection it affords to resultant damage that can occur to bone(s) until my RA is brought to a verifiable standstill in both labs and symptoms.

    You may PM me for the company name, if you are interested, as I know any name brands should not be posted on the boards.

    Best to You!
    Dawn

    DawnF

    #373160
    Dawn
    Participant

    Lou, I just want to say: Ditto to Diana’s comments. I have had to be my own advocate through this, but between the Roadback site postings, and commitment to an infectious-agent(s) theory; I have benefited much, so that within 3 years (low and slow) I have come back around about 70% to who and what I was before the onset of severe RA symptoms. I guess I would illustrate RA (and the other rheumatic disorders) as a tower that has to come down at the same time sections are rebuilt with the proper blocks. Thereby the multi-layer approach of diet, probiotics, allergens, tetracyclines (most typical), careful and directed exercise as change allows, and at least a doctor that will allow your precriptions for antibiotics. Everyone’s “tower” was built by different blocks, that is why the approach is not textbook in nature, but by understanding yourself and triggers you will get a handle on most of this. Don’t give up, keep searching and you will find your way back….road back! Best and hope to you! Dawn πŸ™‚

    DawnF

    #362251
    Dawn
    Participant

    See, it does work! Not 100%, but I would say 60-70% of myself is back and my feeling is I am on a definite upswing so I anticipate even more. Added Sulfurzyme into my regimen as I was having to go back to Prednisone on a pulse-dose everytime there was a severe stress (3 deaths in the family in the last half of 2013!) and just didn’t want it to be part of my ongoing life. It has help immensely and then I added massage for the hands and feet to break down the areas that were trying to lock up from inflammation being present for too long. I must say that although painful, so worth it as a couple of my fingers threatened to become “trigger” and were starting to lock off and on – and all of them are freed up now! Not a gentle, petting massage, but an intelligent, deep massage where the crystalizations are sought out and grinded into to break down and free the area for better circulation.

    So, I’m not done in my journey as I would consider it; but I would say I found what appears to be/and now has clear evidence indicating to be: my road back! All without biologics, MTX, Plaquenil or heavy steriod use. I couldn’t be more pleased with the benefits this site and absolutely ALL those frequenting it have proved to be. From “silly” to “intense” postings – every one of them has helped me along….and the MOST challenging part to this point has been sticking-it-out as the backslides, doubt and flares can really tax the emotional take on this.

    I will post again in the coming months to compare further gains – but couldn’t miss this opportunity.

    DawnF

    #371181
    Dawn
    Participant

    I had a 3 year total-exhaustion period with no medical insurance and a minimum wage job. Suspected EBV but never tested.
    Dawn 😯

    DawnF

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