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Just dropped by to say ‘Never Give Up’. Seven years ago today I started AP and have never looked back.
Prior to starting AP I was diagnosed early onset severe RA and eventually my MD’s changed the diagnosis to Palindromic RA. When they tried to put me on Plaquenil, I began researching madly. Anything rather than risk eye damage. Now I laugh at how upset I was; there are many more meds out there way worse than Plaq.
That being said, and because my onset coincided with dental work for a serious tooth infection, I researched ‘infection’ and onset and eventually came across information that led me here. At first I thought the Roadback was some sort of weird antibiotic cult. After watching the board for months, and later eventually asking questions, I happily joined. Cults can be a good thing. 😉
I was an early responder, getting better in leaps and bounds, probably because I had very little suppression in my medical history. By October I could dance, by November I could cook for 16, by December I could run (not well, when you’re as round as I am) and by January I could get on the roof and take down Xmas lights.
As you all know, it’s 2 steps forward, one step back. I’m not saying it was all easy, and at times I’d lose faith, but I kept on, made changes as necessary, tweaked here and there, and now I’ve been pain free for 7 YEARS!
At diagnosis my RF was 706 and for years and years my docs and I could not get it down below 360. Lately, I’ve been in the mid-200’s and my docs are talking about weaning me off the abx. I came of the Zith and am now only on the Brown MWF protocol. I’m still not in ‘remission’ yet by biomarkers, but hey, I have no pain, so who cares?
I reluctantly made dietary changes. Those around back then probably remember my reluctance to give up my morning bagel. Now I’m paleo-lite – meaning I still have some grains, but my carb intake is waaaaay down. We cut out GMO when I found the connection of non-gmo sugar intake to twinges. I can have cane sugar but I wanted to lose weight so that is almost non-existent in my diet.
So, losing a little weight, I went back to work! I love it! Being back in the workforce opens up so many horizons that I’d all but thought were gone forever.
So – keep on doing AP. Work on changing what needs to be changed. You will not regret it.
I LOVE THE ROADBACK!
Pip
Hi Pip — I remember you well, as I joined about a year after you and you were still actively posting then. I am so glad you are still do so well. If I remember correctly, you tried to spread the AP word on some of the more traditional boards and took a lot of grief for that.
I hope you will join us more frequently, as it is so inspirational to the new readers to hear stories like yours. Keep up the good work!
Bonnie
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!Hello, Pip!
Thanks for coming back to tell your inspirational story. I am sure it helps so many looking for hope. It also tells the story of being patient and persistent…both qualities required for success with AP.It is interesting that your docs want to wean you from the antibiotic. Personally, I would request to stay on it indefinitely…not wanting to risk a return to pain and illness. The low dosing of an antibiotic beats taking much more harmful and risky drugs for the rest of one’s life!
I am happy for you and your success with AP! Come back again and share with us!
MaryHi Pip – good to see you back – and with such great news! So glad you are doing so well. Yay for persistence!! 😀 😀 😀 😀
In terms of stopping abx, I do agree with Mary. If it were me, I would not consider going off the abx while my labs are still showing some disease activity, even if latent. (To be honest I would probably stick to an extremely light maintenance dose even if they were). From knowing about others’ experiences, it seems to be much harder to bring things under control a second time if needs be.
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)Hi Pip!
Good to hear from you…great to hear you’re much better and working. That is just plain terrific. 😀 😀 😀 😀 I have been thinking about you and wondering how you were doing…and here you are…are few days later.
Gentle hugs to you,
xoxo
EileenHappy to hear you are feeling great!
Also, your recovery is very encouraging to me since I just joined this forum and getting to know one or two about AP.
If only I could walk around and work without pain, I would not want more.
Anyway hope you will get into remission soon!
SKThat’s what you get for not proofreading – just edited my original post to say “no pain for 7 YEARS’. Technically, that’s not entirely true, but I was painfree by December 2006. Just kept getting better and better.
Hi Bonnie! Great to see you’re still here. Yes, that’s part of the reason I stopped posting. Too many “pharma pimps’ on other boards. You get to recognize them pretty quickly. They’re the ‘I never had any side effects’ and they pick apart any story of success unless its ‘a big gun’ and ‘trust your doctor’ and ‘there are new meds in the pipeline’. They never vary the script altho lately I’ve heard they’ve taken to busting the chops of people who do diet and, egads!, vitamins. I do trust my doctor; it’s not like you can get abx on a streetcorner. I just didn’t trust THEIR doctor. LOL And I will try to come back here; you guys have the best ‘out of the box’ thinking posts of studies and whatnot which I always keep for my never-ending collection. I do love the science behind this…only place we’ll get the cure is down this alley, eh?
Mary – I see Drs F and L in CA. Years ago they basically said ‘never come off’ so I was a little surprised at the talk about weaning. Apparently except for my RF and some obscure myco test, everything has been normal for years. I think it was the fact they finally got it to start moving down after, what?, 6 years that made L say there was even a possibility.
Lynnie! How are you, girl! – I do agree about it being a bear trying bring it back under control if you stop the meds. You probably don’t remember my SNAFU about a year in where I forgot my probiotics for 6 weeks. I spent years undoing that. Gave myself a heck of a systemic yeast infection. And if I don’t feel ‘perfect’, and the numbers aren’t perfect, then I’m staying on. It’s just I’ve been reading so much about the Microbiome Project and how that plays out in disease, that I’m thinking of going GAPS for 2 years and seeing if I can reset the gut so the body can keep these myco’s in check. What do you think?
Eileen – isn’t it funny how it works out like that? I was thinking about ‘the boards’ and one thing led to another and I remembered the date. I never forgot the date of the day I fell in ‘the pool’.
SK – paraphrasing Galaxy Quest here, but “Never Give Up, Never Surrender”. You AIM for remission, you’ll get there. The people who are not willing to do ‘whatever it takes’ are the ones who don’t make it. This is not a slam; the old RB (before my time???) was ‘sink or swim’. That’s really hard for a lot of people to do. You start feeling better you just don’t want to feel bad by reducing the dose of the ‘other meds’ or doing what needs to be done and thereby rocking the boat. But, IMHO, that’s the problem. You have to wean down, you have to keep working, changing the diet etc., in order to get remission. Commit to remission – you’ll get it. There was NO other option as far as I was concerned.
Oh, and give up the bagels. LOL I really regret my not looking into the diet angle before it bit me on the nose.
Hey Pip, what a blast from the past! I am soooo happy to hear how well you are doing!
Until I saw your post, I had come here to remind people there is more than one road back. Michelle had her yearly checkup – I’ve lost count of the exact number but it’s getting close to 10 – and her rheumy called today to tell her that once again there are no changes in her xrays since he started seeing her and starting her on that evil nasty big pharma poison 😆 . I can honestly say the only time we think about this nasty disease is when she gives herself a shot, and we often forget that! I’d say she averages one every two months or so.
That said, I certainly admire your diligence and courage in sticking with your chosen treatment. It speaks volumes about your character to be able to see the light at the end of a very long tunnel. If this disease has taught me anything, it is “whatever works”. The only evil actor in this entire scene is the disease.
Getting off track, my mother was dx’ed with PMR about a month ago. I thought I knew all the AI diseases, but had to look this one up. Surprisingly, it seems to go into permanent remission anywhere from 2-6 years from onset (according to her doctor). If that doesn’t tell us these diseases involve some type of unknown pathogen, I can’t see what would.
I would like to see definitive proof of a cause before I die, but Michelle’s rheumy is doubtful. Until then, whatever gets you through the night, its all right.
Best wishes! Hearing from you completely made my day.
JoeJoe!
LOL – well, I know you and Michelle are happy but those potions scare me! I am soooo happy to hear she has no damage tho! How cool is that?
I didn’t know that about PMR. So, you’re thinking the pathogen plays out after a while or the body is able to bring it under control? Hmmmm.
Like you, I want proof. I’m holding out for the Microbiome project but, hey, that’s me. Everybody has their own spin.
Pip
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