Home Forums General Discussion New Posting/Newly Diagnosed

This topic contains 2 replies, has 2 voices, and was last updated by  Dawn 5 years, 9 months ago.

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  • #306490
    Dawn
    Participant

    Hi ALL, can’t tell you how much my friend benefited from my research on this site in conjunction with a compassionate call from Cheryl (volunteer) directing her to a physician who was very familiar with this protocol. She appears to be in remission at this time after quite a long haul – but sad to say, for myself, I just recently was diagnosed with the same problem! Cannot believe it, but have to as it explains the recent onslaught of sore joints/tendons I was going through that I initially thought was over-exertion on my part since I have such a sedentary job.

    Anyway, quick blood profile by by GP revealed extremely high CCP and thereby a referral to a Rheumy local and accessible via my insurance. Thankfully, that Rheumy is very open to accepting my decision to go the route I have read so much about here on this site! I guess if I had any question at all at this particular point, it would be: since I am so new to RA and at this time have only really had inflamation with no residual joint damage (about 3-4 months active flares); would it be safe to move with the 100 mg. Mino/twice daily to start?

    Other than that, I recognize the value of the Plaq and Pred in assisting with the very uncomfortable flaring I have started having daily now. But my Rheumy said to start either Plaq or Mino – not both, to be able to track any possible side effects to their source quickly, and I am in agreement with that. I asked to start the Mino first, thinking that I have hopefully caught this all so very early as to benefit more quickly from the Antibiotic regimen.

    Any thoughts would be welcome, meanwhile, again my heartfelt thanks to all posters as their experience is invaluable with what is an extremely scarry and challenging disorder!

    Best,
    Dawn 😉

    DawnF

    #362208
    Maz
    Keymaster

    @dawn wrote:

    I guess if I had any question at all at this particular point, it would be: since I am so new to RA and at this time have only really had inflamation with no residual joint damage (about 3-4 months active flares); would it be safe to move with the 100 mg. Mino/twice daily to start?

    Other than that, I recognize the value of the Plaq and Pred in assisting with the very uncomfortable flaring I have started having daily now. But my Rheumy said to start either Plaq or Mino – not both, to be able to track any possible side effects to their source quickly, and I am in agreement with that. I asked to start the Mino first, thinking that I have hopefully caught this all so very early as to benefit more quickly from the Antibiotic regimen.

    Hi Dawn,

    How great to hear about your friend with RA who is now in remission using abx therapy! If it’s not too much to ask, do you think she’d write us a testimonial for the main website?

    So sorry to hear you are now in the same boat, but it’s good news that your rheumy is supportive of you trying the therapy! Sure does help to take off some of the stress of diagnosis.

    If you get a chance, try to read the Henry Scammell book, The New Arthritis Breakthrough and the educational material on the main site. There is also a Dr. Brown documentary at the top of this forum that you can watch, which includes info about dosing at the end of the video (100mg doxy =100mg mino in this context).

    RAers with a lot of inflam won’t typically start right into the 100mg mino BID dose (unless they are on other strong DMARDs or a biologic), because this can elicit runaway herxing and more inflammation within a period of days to weeks after initiation of therapy. Brown was a pretty smart cookie and took the low and slow approach, knowing just how sensitive (to bacterial antigen) rheumatic tissues could be. He would usually start off RAers with a dose as low as 50mg or 100mg once a day on just Mon, Wed and Fri (abbreviated around here to MWF). Then, if stable after a period of time, he’d sometimes keep the dose where it was or increase it and even add other abx, if he thought the protocol needed tweaking to an individual. Working with an experienced doctor can really help in this process, but many do very well on their own with just an open doc to help them initially, too. The key is to really try to get a good understanding of the mechanism of action with the therapy and to become one’s own health advocate, as there are many things that can be done to speed recovery and to support the therapy. As your friend found, it can be a journey back to wellness and there are no overnight “fixes,” but the slow and measured approach, along with starting the therapy early in the disease and before it gets too rooted, bodes well for a faster response.

    By way of example, when I was a newbie, I began on 100mg once daily for a couple weeks and by the end of the second week, I was herxing like the dickens. I had to dial my dose back to 100mg BID MWF, but it was only a guess, because it is harder to dial back the dose than to increase it slowly to tolerance from a low dose.

    Wishing you all the very best and a warm welcome to you, Dawn! 🙂

    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.

    #362209
    Dawn
    Participant

    Maz, thank you for the response – how odd; but when I went to fill my prescriptions the minocycline was not due in until today, but the Plaquenil was already available. So based on your response, I’m gonna run with that one first in my regimen then!

    I will talk to my friend tonight, actually, she has not had great hands since all this played out for her (I understand as mine are fighting me now, though further down the list of sore spots than I expected), so texting, typing, etc…are all a chore for her and right now I am not fit to help out much.

    There was a recent post on minocycline that really kinda zero’d in the handling; I think I will have to “administer” it; just happy to have a Rheumy willing to work with the protocol. The other physician my friend saw was quite a trip out of my area for me – and with being the sole supporter right now; not feasible or I’d have gone straight in that direction!

    Again, thank you for the site and I will keep making good use of posts as well!

    Best to ALL!
    Dawn 😎

    DawnF

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