Palindromic Arthritis, will I see the light?

[Penny]

Hello,
After 8 months of off and on severe pain that travelled thru my body I was diagnosed with Palindromic Arthritis on Dec 18, 2014. My Dr. was quick to put me on methotrexate but after reading up on it I decided I would rather live with pain. After trying to do my own research on other treatments I came across Roadback. I read through all the testimonials and ordered the book, which I am reading again. I went back to my Dr. armed with all my information and to my amazement she agreed to have me try antibiotic therapy. So I am Mino 100mg a day and I have been on for just over 2 weeks and it has been terrible. I am assuming that I am herxing as I feel much worse than I did before. Just the past three days I am not even able to walk. Unfortunately there is not a lot of testimonials of people with Palindromic Arthritis so I would love to hear back from those who are on therapy and those in remission. I would love to hear their experiences. Thank you.

[m.]

Hi Penny,

Welcome to Roadback! I’m sorry you are not feeling well.

My suggestion is to go to the main page http://www.Roadback.org, and in the upper right corner click on STUDIES then PROTOCOLS then HISTORICAl PROTOCOL.

There is a lot of good info in there.

Also, there is a video of Dr. Brown discussing his protocol at the top of the Discussion Board, on this page.

You may find you’ll do better on intermittent dosing (MWF) and possibly a lower starting dose.

This is not a one size fits all protocol, even for people within the same category of disease. It might seem counterintuitive, but not everyone reacts well starting out great guns, although some do just fine.

Good luck!

[Penny]

Thank you for your response,
I just finished reading the historical protocol, yes there is a lot of great information.
I will see how the next week goes maybe I will need to go to Mon/Wed/Fri doses instead of daily.
Take care:)

[lynnie_sydney]

Hi Penny
I have your diagnosis – was diagnosed in early 90’s. And to this day, I have managed to stay pretty well and off any toxic meds. I did go on sulfasalazine (with some success) before AP but took myself off it after a couple of years. If you look at my signature information, you’ll see a link to my original testimonial from 2007 which describes my journey on AP. I have only ever been on the historical protocol (pulsed) on which I did just fine. Most conventional docs prescribe mino as if treating an acute infection – and because they don’t subscribe to infectious theory, don’t understand the potential herxheimer response this can elicit – which is counter-productive as abx can’t reach the target through great inflammation – as well as making life unbearable for the patient. If you are going to reduce to MWF, then you may well need a week’s washout before re-commencing at the lower pulse dose (this is because of the half life of the medication which stays around in the body and is something you can read about in the the historical protocol). And, if you find this dose too high even on 3 days, you can dial it back even further initially.

Palindromic RA is notorious for not responding to NSAIDS – mine never did and that includes steroids on the 2 occasions I was given shots for agonising attacks. It is also a pretty common beginning to Lyme Disease manifestation, so it may be worth considering getting tested for Lyme at some point.

Best to you. Am sure things will look a little brighter once you have this response dialled back to manageable levels. Detoxing to flush toxins from your system will help. First step in that is loads and loads of pure (bottled or boiled) water.

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)

[Pip]

Hi Penny!

Yes, you will see the light! I did. I was diagnosed almost 9 years ago and thought my life was over. It wasn’t thanks to the RB and all they did to help me learn about this protocol. I’m presently reducing my abx, trying to go ‘antibiotic free!’

Pip
PS – I’m Palindromic.

[Penny]

Thanks so much Lynnie and Pip!
I am going to continue and be patient. Lynnie I will see how this week goes and than stop to flush out and start three times a week as recommended. I am surprised that my rheumatologist would prescribe it daily. Anyway I have been telling everyone about ROADBACK and hopefully I will along with all of you will help others get there life back.
Take care:)

[lynnie_sydney]

I am surprised that my rheumatologist would prescribe it daily.

Very common with rheumies who consider mino at best as a ‘weak DMARD’ if they are willing to rx it at all. The Harvard Protocol (daily dosing) is very often way too much for those with an inflammatory form of arthritis and, in some instances that we have witnessed here, can make the patient decide to give up on AP and go for something that gives them some relief. Plus they and the rheumie will often see a strong herxheimer response as a worsening of the disease (i.e. not something temporary that is caused by cell die-off and that is a precursor to greater wellbeing). Antibiotic Protocols need to be tweaked to suit individual responses and, in an approach that takes infectious origin or trigger into account, more is not necessarily better – less is,in fact, often more 😀

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)

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