Confused NEWBIE needs help

[DonnaDonna]

This forum has been very informative and gives me so much hope. I am just at a loss where to go from here. Let me give you a little background about my condition. About 20 years ago when I was 25 I felt the first pain in my right index finger. I went to a doctor and they said it was nothing. Well over the past 20 years that “nothing” turned into deformations and erosions on most fingers on both hands. I’ve been to a few rheumatologists all of which want to pump me up with methotrexate and Humira. I was never diagnosed with RA but all of my symptoms mimic it. I’ve had MRI s on my hands which show inflammatory arthritis. I finally found an osteopathic doctor who was willing to give Dr Browns protocol a try. The only downside was he wasn’t too familiar with the dosing and started me off aggressively with 200 mg twice a day every day for a couple of months. The flare in my hands was so bad. I am now down to 100 mg twice a day MWF and the inflammation in my hands is still terrible. I really can’t take antiinflammatories because I have a history of ulcerative colitis. The good news is I was diagnosed with ulcerative colitis when I was 19 and I have been on a gluten free diet for the past 6 months and my last colonoscopy showed NO evidence of ever having the disease. Prior to 6 months ago I had a terrible diet which consisted of processed foods, dairy,sugar and gluten. With the exception of eating a lot of ice cream and chocolate over the past two months, I have pretty much ate whole foods. I have stopped the dairy and sugar once again in hopes of reducing the inflammation. The good news is I have a wonderful doctor who is willing to try anything that will help me but I have no idea where to take it from here. I also need to add that in desperation I allowed my rheumatologist to prescribe Plaquenil, 200 mg 2x day to help with inflammation. I’ve been on it for over two months and have not seen any improvement. I just need a little support because there are days I feel so hopeful and other days I feel so helpless because it’s been about 4 months since I’ve been taking minocycline and my fingers are still very swollen 😉

[sandrabonfield]

Hello. I am fairly new to all this, the AP protocol, so I know the more experienced ones will reply to you soon. The weekends can be more quiet on the website. It may be that 100 mg twice a day, even on mwf is still too hight to start. Maybe you could search and find more information in the advanced search section.

I understand how you feel, it is very much up and down and can feel so lonely, but you have found an amazing gift in the Roadback, with so many lovely people willing to share their experiences. I began the protocol in October, I have improved but had also had many setbacks. I believe in this protocol, for me I believe it is my only hope.Sometimes the positive changes are so small, it may help to write in a diary, just even a symbol or a number of a good, bad or ok day.
I wish you all the best
Sandra

[Anonymous]

So if even 100 mg twice a day M/W/F is too much, what should be a starting dose?
Linda

[lynnie_sydney]

A reasonable starting dose is very individualised. ‘Low and slow’ is the often cited credo for people with inflammatory forms of arthritis. Too much inflammation in the ‘herxheimer’ response (caused by call die-off) is counter-productive, not to say debilitating. Some hyper-sensitive people have started on as little as 25mg on just one or two days a week. More about this in the Historical Protocol info in Education section on the main site. If whatever starting dose is too high – and for some 50mg twice a day on MWF falls into that category – a washout period of a week is often advised, then re-starting at a much lower dose

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)

[DonnaDonna]

Thanks so much for your suggestions. I actually went to my doctor and reduced my dose to 50 mg twice a day MWF. I also bought the paddison program for arthritis and for the past 10 days I have been on a strict elimination diet. This diet is gluten free, dairy free and no animal products at all. So far I can only eat raw bok choy, plain greens, steamed sweet potatoes, quinoa, amaranth and buckwheat and cucumber and celery juice. Believe it or not the swelling in my fingers slightly subsided. I’m remaining hopeful and will keep you posted 😆

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