Newbie Here – Let’s Take A Poll

[Airen]

Hello All,

I am new to the Road Back forum. I am 36, wife and mother of two. I was diagnosed with RA last year. I refused the harsh drugs my rheumatologist tried to push on me and began my own research/path of treatment in November 2014. I hope to learn a lot from you all. I have read every single testimonial from the Road Back website and The Arthritis Breakthrough by Henry Scammell and I hope with every fiber of my being that AP therapy will work for me too!

SO, let’s take a poll!

1. How long did you have RA before beginning AP therapy?
2. What was your pain level once starting AP therapy?
3. Were you on prednisone when you started AP therapy?
4. How long did it take for you to notice that AP therapy is working for you?
5. Does the AP therapy completely manage your pain? Are you pain free?
6. What do you take? Brand or generic? If generic what manufacturer? If Watson, does it work well for you?
7. If a particular manufacturer didn’t work for you, did you switch to a different manufacturer and did that one work and you finally saw results?

Thank you all for your time!

Diagnosed with RA in October 2014, pain started in February 2014
Started AP in June 2015
Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

[lynnie_sydney]

Hi Airen and welcome!

My testimonial (which you’ve probably read) is linked to in my signature box below. Think it covers most of your questions.

One thing I’d just point out to you to think about. Most, or at least many, of the people who use the forum are relative newcomers to AP so may not be very far down their AP road (hence why they tend to come to the forum). The testimonials are from those who have had longer-term results and will give you a fuller picture.

For my own road, I started AP in 2003 and am now on a mixed antibiotic protocol that is pulsed MWF and changed up when needed. I can no longer take the tetracyclines. Generally, I am relatively pain free with some blips along the way. I have never been on prednisone and the only other drug I have taken is sulfasalazine, taken for 2 years before I started AP. Answers to the rest of your questions you can read in my 2007 testimonial 😀 😀

AP is generally a slow road to greater wellbeing and patience is the key. The fact that you were only diagnosed last year is good in that you do not have to contend with a history of taking other drugs and a long-term condition which can sometimes make the path slower and a little more difficult.

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)

[Airen]

Wonderful, thank you Lynnie! I will definitely started reading the testimonials.

Diagnosed with RA in October 2014, pain started in February 2014
Started AP in June 2015
Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

[jasregadoo]

Hi Airen,

I do kind of like the idea of having the information here in one place rather than trying to find people’s stories, so I’ll answer. Though as Lynnie Sydnie says, I’m relatively new and in process right now.

1. How long did you have RA before beginning AP therapy?
I was diagnosed with sero negative inflammatory arthritis in early October of 2014. I started AP at the end of February, 2015.
2. What was your pain level once starting AP therapy?
I had been on Prednisone for awhile prior, so my pain was lower than at the beginning of the disease. I haven’t kept any sort of pain journal, so it’s just my faulty memory. I’d say on a scale of 1-10, it was likely a 5.
3. Were you on prednisone when you started AP therapy?
Yes, and I still am. I’m trying to get off of it, but going slowly. I take 2.5 mg a day. Today I cut back to 1.25 mg. I also take an aleve twice a day, and am trying to get off of that as well. One thing at a time, though.
4. How long did it take for you to notice that AP therapy is working for you?
I noticed some improvement after about 2 months, I think. A decrease in pain from a 5 to perhaps a 3.
5. Does the AP therapy completely manage your pain? Are you pain free?
Not yet, but I’ve only been on for a few months, so I’m hopeful.
6. What do you take? Brand or generic? If generic what manufacturer? If Watson, does it work well for you?
I take Ranbaxy minocycline capsules.
7. If a particular manufacturer didn’t work for you, did you switch to a different manufacturer and did that one work and you finally saw results?
I’ve seen some good results with Ranbaxy, so I haven’t tried switching yet.

Good luck, and I do hope this journey is successful for you (and for all of us).

Julie

[Airen]

Thanks so much for your reply Julie! Sounds like our stories are a little similar. I hope you continue to do well!

Diagnosed with RA in October 2014, pain started in February 2014
Started AP in June 2015
Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

[bonnielou]

Hello Airen.

1. I had RA about 10 months before starting AP — from about February till October 2007
2. My pain level was pretty high, and I have a very high pain threshold. I was taking a lot of Celebrex for pain.
3. No prednisone
4. I began to notice improvement in about 3 months. I could move more easily. I had days where I forgot to take the Celebrex.
5. I have some residual joint damage in my right hand, and I have some pain and discomfort. But I live a completely normal life. No one who sees me would think I have RA.
6. I use Teva Minocycline
7. I was on name brand in the beginning, and I have ordered the name brand from Canada a few times. I have returned Aurobindo brand to Walgreens and told them I would not use that manufacturer.

This October it will be 8 years on AP. And I am so very grateful.

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!

[maz.aust]

Hi from me too …

It’s a long haul for me but like Lynnie my testimonial (albeit a long one,,, sorry) is there for the reading too.

I refused the trad drugs and searched the net where I found a couple of people who helped me along the way (one of which is Lynnie) and I am eternally grateful for the advice and support over the years.

I started AP in Jun 2008 (I think)
I have only been given prednisone for an unrelated severe allergic reaction & suffered a severe reaction to the pred itself
The Arthritis Breakthrough by Henry Scammell is a great book & to this day I still read parts of it to refresh my memory
How long did you have RA before beginning AP therapy? about a year
What was your pain level once starting AP therapy? roughly 100 out of 10, excruciatingly painful so bad that even morphine didn’t ease the pain I was in
How long did it take for you to notice that AP therapy is working for you? small changes after a few months but then all of a sudden I realised I could do things I couldn’t do before
Does the AP therapy completely manage your pain? Are you pain free? yes and most of the year I am pain free

It’s a long road to go against all the specialists – but I have found that most I have had are stuck in the normal med path and won’t look at anything else

My husband thought I was practising voodoo and being stupid not listening to the rheumies advice at the time, but after a while realised he hadn’t found me on the floor crying with the pain for a long time & has since advised others he knows to try AP because it was working for me.

I have one GP who treats my arthritis and another for general health and initially this GP was very sceptical and asked if he could monitor what was happening, I of course allowed that and after a year he changed his mind about AP and was telling other patients of his to try it because of my success.

I wish you the best and know that you will have lots of support here on the Roadback website from such wonderful knowledgeable people who are all patients themselves — there is nothing like self help groups to make life easier.

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[Dawn]

By way of assisting:

1. How long did you have RA before beginning AP therapy? 3-4 months
2. What was your pain level once starting AP therapy? 8/9 out of 10
3. Were you on prednisone when you started AP therapy? Yes, 5 mg. daily for 6+ months, then began a weaning off
4. How long did it take for you to notice that AP therapy is working for you? 1 1/2 years from the start
5. Does the AP therapy completely manage your pain? Are you pain free? now – yes, for 2 1/2 years or so – no, NSAIDS etc…
6. What do you take? Brand or generic? If generic what manufacturer? If Watson, does it work well for you? Generic always due to medical coverage, varied from Dr. Reddys, to Ranbaxy, capsules and caplets
7. If a particular manufacturer didn’t work for you, did you switch to a different manufacturer and did that one work and you finally saw results? Have not had to perform any switches.

Best to you on your journey!Lots of help available here!
Dawn 😛

DawnF

[Airen]

Thank you all for your replies!! It so encouraging hearing your experiences. I am just starting out on my second week of AP but am so excited!!!

Diagnosed with RA in October 2014, pain started in February 2014
Started AP in June 2015
Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

[emmaline]

1. Almost 2 years before finding AP ( only been on it 3 months)
2. Pain was 8/10
3. 10 mg prednisone and still taking
4. A couple of weeks, but there are still days when I flare and feel awful, then a couple weeks go bye and I feel good
5. Pain has improved. My knees used to swell so bad I couldn’t get down my stairs. That pain is minimal now. Also, my foot pads used to be sore and it was hard to walk. I can walk fine now, with minor ankle swelling. I still have bad days, but they are fewer.
6. Ranbaxy
7. NA

Good luck! There’s good reason to be excited and hopeful!
My biggest fear is that the 10 mg prednisone daily will impede my progress by suppression my immune system, but I can’t lower my dose right now without terrible suffering. Just being patient.

[Airen]

Thank you Emmaline for your reply. I love hearing that this is working for you. I am only on week 3.

Diagnosed with RA in October 2014, pain started in February 2014
Started AP in June 2015
Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

[Author]

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