Home Forums General Discussion I need a reality check

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  • #300305
    Devie
    Participant

    Okay guys- help me out here!

    I am eating. meticulously (okay- I have had gynormous carb cravings but I hardly give in).

    It has been a month on the mino M, W & F once a day.  I have stopped the sulfasalazine and after two days off Advil following my endoscopy which were very painful, I am back on it and functioning fine.

    I need somebody to tell me if I am getting better.  How do I know?  I have had some flares?  Were they herxes?

    I journal but nothing really seems to change.  Meanwhile I am reading about people who have taken two doses of mino and feel changes.

    Any advice would be so appreciated!

    I am still planning on seeing Dr S in a month but until then I could use some input.

    Thanks always

    Devie

    #312843
    lynnie_sydney
    Participant

    Devie – I believe you are panicking and expecting results way too soon. It would be good for you to study the wealth of information on the main RBF site, which will help put things in perspective. I am assuming you've read the Henry Scammell book too. You could also go to the search funtion on this board for “herx” and something like “improvement”. Results from this protocol are, what John McDonald has often said “glacial” – you almost dont notice that they are happening until one day you suddenly notice differences that have crept up on you. The good news is that  these are actual improvements in your condition, not just masking of symptoms/pain. I would also search the old board – Cheryl F put up the details of how to access it last week. There is a wealth of useful posts on there about the very things you are asking about. It would also be good if you could edit your profile and, in your signature line, put in your diagnosis, how long on AP and what you're taking – it helps for people to respond appropriately when they see that info. One month on mino is hardly any time at all. You may be getting a herx that is mino related and/or from stopping the sulfasalazine. Educate yourself as far as possible and please be patient, whilst, of course, asking for support from the folks on the Board. Best, Lynnie.  

    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)

    #312844
    Devie
    Participant

    I will do all of your suggestions a little later in the day- I am late for work this morning!

    Have a great day!

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