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Hello All,
I hope you are all doing well and well on the Roadback to recovery.
I’m a bit late for my annual “progress report” and thought I’d get it posted today to start off the New Year right.
Today is 4 months and 7 days after my 10th anniversary on AP and another year after my last post. Oops!
Guys, this stuff works. It’s not a magic little pill, it’s not a miracle recovery, it’s hard work dragging yourself back to health. But it happens, and you DO get your life back.
I got my life back. So much so that I’m swamped and can’t keep up with it and I LOVE it. One thing that used to irk the heck out of me, on traditional boards, is that BS people give about ‘acceptance’ and ‘realizing you can’t do all that you used to do’ and, God forbid, those damn ‘spoons’. I hated those spoons. With a passion reserved for unthinking, kneejerk political discussion from both sides of the aisle. But I digress.
If you can put in the effort to learn, to make that uphill climb back to your deserved health, than I can tell you from the top of the mountain, it is worth every minute you put in.
Life is stress. Life is messy. Life is learning. And life is healing.
Heal well, my friends, and know you CAN get your life back.
Thanks for posting Pip. It is great to hear from those much further down the line & doing well. And you may be four months late posting – but makes a cheery, uplifting start to the New Year!
2013 Poor gut & low white blood cells. Jan 2014 RA symptoms. Diet - no gluten/dairy/nightshades/sugar. Started AP in Oct 2014. On Mino MTWTF. RA improved but still there. Many supplements.
I sure would love to know Pip’s diagnosis and what has led to her recovery. Wonderful!
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWFPip, I know you hate the spoons…but I have NO IDEA what people mean when they talk about them. What is the spoon metaphor that irks you so? Happily for me, I found this treatment early, and have not spent much time on other boards.
Hi jasregadoo,
I think Pip is referring to the Spoon Theory, which was penned by a woman with lupus to describe how she felt to her friends who were unable to comprehend her daily struggle:
https://en.m.wikipedia.org/wiki/Spoon_theory
Nice to hear you are still doing well after your recovery from palindromic RA, Pip.
Pip if you are still there – I see from Maz’ post that you had palindromic RA. Would love to know if you still take minocin or such like (feel it is necessary to keep on it), or if you have been off treatment for some years. Thanks
2013 Poor gut & low white blood cells. Jan 2014 RA symptoms. Diet - no gluten/dairy/nightshades/sugar. Started AP in Oct 2014. On Mino MTWTF. RA improved but still there. Many supplements.
So nice to hear from you Pip! We were on this site exploring and recovering at about the same time, as my 10 year anniversary of my first RA symptoms will be this February, though I didn’t start AP until the following October. I’m so happy you have your life back again. I feel the same way. It’s such a gift to be mobile again, and I am still so grateful to Road Back for helping me find my own road back. Post your picture so we can ‘see’ you!
fondly,
BonnieBonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!Hi Bonnie, I ask the same question of you as of Pip. Are you still on mino 10 years later. Do think you have to be on it forever, or at some point did you feel well enough to stop taking it? Thanks
2013 Poor gut & low white blood cells. Jan 2014 RA symptoms. Diet - no gluten/dairy/nightshades/sugar. Started AP in Oct 2014. On Mino MTWTF. RA improved but still there. Many supplements.
I am still on pulsed mino. I was taking 100mg MWF for the first 5 years of my treatment (2007 – 2012) but was experiencing some inflammation in my right hand, which needed a cortisone shot to get under control. So after 5 years I finally had a consultation with an AP physician, Dr. F in California, and he increased my mino to 200mg (100mg/morning, and 100mg/night), still MWF. That’s the plan I have been following for the last 4+ years. I saw Dr. F again last summer for a check in, and he made no changes.
So yes, I have been on the minocycline all this time and I have no intention of stopping. My lab results still show pretty high levels of mycoplasma, and as long as those bugs are still present I am still going to need to combat them. But I am doing fine. I use a great probiotic (https://medikorlabs.com/shop/restoreflora/) maintain a healthy diet and weight, and do a great deal of gentle exercise, including light weight training. I am still working a full time job and regularly running around after 5 grandchildren. I do not take this ability for granted, as I could barely turn over in bed when the RA first hit.
Glad you are improved Cathlo — but for many of us it will remain part of our lives.
Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!Thankyou for sharing your anniversary with us…It has given me more hope to continue on the journey as I have been struggling with scleroderma and have not had much progress in nearly five years..Thankyou for your great words of encouragement. I’d love to be on that mountain with you!! lol
Debbie –are tou taking 200 mg daily of minocycline -every day -???Are you also taking what I refer to as support meds as well –for Raynauds -reflux etc
I agree with Bonnie -there is no reason to stop the minocycline after remission -relapse is a very real possibility –I still take 200 mg daily since 1999 –had remission in about 2004–5 –at that time Trentham raised the possibility of me going off minocin –I asked about assurances of no relapse –he couldnt give me that -in fact he mentioned of some folks relapsing after going off it –I asked if he was ok with me staying on it –he had no problem with that !!!!!!!!!!!!!! AS long as one takes enough probiotic daily -its so innocuous -its ridiculous to do anything else !!!!!!!
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