How Do I Stay Strong During Early AP?

[CurlyinNC]

I’m a few weeks into my minocycline therapy and per the usual my symptoms are worse. Prior to AP, I was using only NSAIDS and found that I could function quite well during the day and my symptoms were minimal once I got going. Now even with NSAIDS, my fingers just don’t improve much during the day as they did before. Heat therapy doesn’t really even help any more.

When I first read about AP, I knew that this was the treatment I wanted to pursue. Of course, I didn’t want to believe that I would suffer from herxing. At least, that’s what I assume I’m experiencing. There’s always that chance that my condition is worsening.

Dr. S recommended that I reduce my minocycline (Watson, 100 mg) to once daily MWF rather than twice daily. So far I’ve not seen any relief. I’m trying to manage my discomfort with NSAIDS(enteric aspirin) and low-dose prednisone when I really need to function well.

Everything you read about RA says you should treat aggressively as early as possible. I know that this refers to traditional treatment, but I worry that my RA could worsen significantly while I’m pursuing AP.

I know there are those out there who can offer tips and ideas on getting through these rough periods. If not for this site, I don’t know what I would do. Thanks, guys.

Diagnosed with RA 10/2014 with very positive anti-CCP. Rheumatoid factor was negative and continues to be negative.
Began abx treatment 12/2014.
Currently taking minocycline 100 mg bid M-F, diclofenac 75 mg as needed, probiotics, various other supplements.

[PhilC]

Hi,

From your signature:
@CurlyinNC wrote:

Began minocycline 50 mg MWF December 2014. Dr. S. has recommended 100 mg minocycline bid on MWF 12/10/14.

To me, the problem seems rather obvious. You increased your dose too much, too soon. Yes, an experienced AP doctor suggested that you do so, so you can’t be faulted for following the advice.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[CurlyinNC]

Hi, Phil. to be fair, I only had 1 dose at 50 mg before I increased to 100 mg, however, your point is taken. I wonder if it’s better to take 50 mg twice daily rather than 100 mg once daily. Any feedback would be welcome.

Karen

Diagnosed with RA 10/2014 with very positive anti-CCP. Rheumatoid factor was negative and continues to be negative.
Began abx treatment 12/2014.
Currently taking minocycline 100 mg bid M-F, diclofenac 75 mg as needed, probiotics, various other supplements.

[Ariel]

I’m feeling the same way. I, too, started AP in October and my symptoms have gotten worse. I actually just got off of the phone with Dr. S, and he has added Zithro to my protocol. So, I will now be taking my current 100mg 2/day of Minocycline on MWF and 500 mg 1x/day Zithro on Tuesday and Saturday. I’ve went to a few different doctors to get opinions on my condition, and right now it looks like RA combined with Lymphedema. I can’t get anybody to “go along” with the AP; however, my second rheumatologist had heard of Dr. S and knew all about what he has been doing. I’m still confident that AP will work. Dr. S told me that it sounds like I’m in a flare and need more help getting it under control. I’m hopeful that adding the Zithro will help me get this under control.

Hang in there. I keep telling myself that 3 months on AP just isn’t enough time.

[PhilC]

Hi Karen,

A typical starting dose for someone with RA is 100 mg every other day or three times a week. Most people just take it on Monday, Wednesday, and Friday (100 mg MWF). However, even that can be too high of a dose for some people, so a more cautious approach would be to start at 50 mg MWF. Some people may need to lower the dose even further, to 25 mg MWF. An even lower dose could be used, if necessary (see below).

From the “Historical Protocol”:

If the medication tends to aggravate the condition, it is spaced differently, maybe to once a week or twice a week, and gradually increased to the M-W-F dosage. Some patients are so highly sensitized to drugs that they can only tolerate minocycline or doxycycline 25-50 mg. once every two weeks or even once a month, but with continued titration of the dosage, it is possible to work up to the optimum standard dosage of minocycline or doxycycline 100 mg. once or twice daily, Monday, Wednesday and Friday without flaring the disease.

See: Severe or Long-standing Disease

See also: How I slowly increased my dose of minocycline

Phil

P.S. How long have you been taking vitamin D?

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[mary77]

An opinion from someone with long-standing Lyme/RA….I think it is difficult for all of us to understand just how sensitive our bodies have become to the infections and toxins they produce. As “killing” of them begin, the toxic load is high. We react to the toxins with increased symptoms…pain, etc.

RAers seem to be VERY sensitive and dosing should be low and slow. It is in our nature to want to treat aggressively just to end the nightmare of the illness. Unfortunately, AP doesn’t work quickly. Patience and persistence are needed to move forward. If I were flaring from a high dose of minocycline, I think a “wash out” of several days to a week followed by a lower and less frequent dose of minocycline would be my choice of action. Let things calm down. Try again with a lower, more tolerable dose.

It is frightening when one doesn’t know if it is a flare or a Herx…I think we have all been there! Just know that many patients have gone into remission with this protocol. It takes time and adjusting meds as needed.
Mary

Mary

[lynnie_sydney]

Also, the ‘treating early and treating aggressively’ approach is what is recommended when approaching RA from the perspective of treating symptoms – which is all that current rheumatology can offer. That is NOT the perspective of AP which is founded on the approach of treating underlying infectious cause/trigger. Very different paradigms.

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)

[kater]

Also are you doing any detoxing?? This is SO very important to get the toxins out of the body. There are many different things you can do. Put “detox” in the search box and lots of things will come up. Drink lots of fluids, far infrared sauna, olive oil and lemon drink, coffee enema, charcoal and chlorellla are just a few ideas. Also acupuncture can help the body balance. I did it for a year and found it very helpful for my scleroderma and carpal tunnel> Eliminating gluten, dairy and sugar from the diet is very helpful too. And some people are sensitive to nightshade veggies and other things
hang in!
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[CurlyinNC]

Phil,
Thanks so much for that input and those documents. I wouldn’t have thought of increasing the dose just 1 day a week, but that seems like a good idea. No wonder I seem to be flaring since I was taking 100 mg twice daily. My intent was to begin with 50 mg twice daily and work up to 100 mg. I had the doc write the Rx for 50 mg capsules so it would be easier to adjust. I thought I had read that the capsules were more effective than the tablets. There are so many schools of thought, it’s hard to keep up.

I’m going to take Mary’s advice and take a week’s break and then start back with 50 mg once daily and see how I tolerate that.

If my symptoms don’t improve by taking a break, would I assume that I’m just having a typical RA flare? Sorry to ask what seems like such a basic question, but I’m new to RA and thus have never had a flare.

Thanks to Kater, Mary and Lynnie for their input and encouragement!

Karen

Diagnosed with RA 10/2014 with very positive anti-CCP. Rheumatoid factor was negative and continues to be negative.
Began abx treatment 12/2014.
Currently taking minocycline 100 mg bid M-F, diclofenac 75 mg as needed, probiotics, various other supplements.

[CurlyinNC]

Phil,

I forgot to add that I’ve been taking Vit D for several years due to a deficiency discovered during a routine blood test. Why do you ask?

Karen

Diagnosed with RA 10/2014 with very positive anti-CCP. Rheumatoid factor was negative and continues to be negative.
Began abx treatment 12/2014.
Currently taking minocycline 100 mg bid M-F, diclofenac 75 mg as needed, probiotics, various other supplements.

[PhilC]

Hi Karen,

Vitamin D made my joint and muscle pain worse. You may want to experiment to try to determine if it has the same effect on you.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[mary77]

Just as Phil stated, Vit. D made my joint and muscle pain worse. There is such a push for high dose vitamin D supplementation these days. You might just eliminate it for awhile to see if pain levels go down…
Mary

[A Friend]

Hi Everyone,
I haven’t been here in several days and just began reading the posts under this thread… and light bulbs began turning on in my head. As I continued to read each post, the things I was going to write/suggest were being written… several different suggestions. So, if that many think the same way, the advice/suggestions shared must be pretty good — don’t you think! And some of those were from old friends who I know have lots of experience. So, now I will “paste” something I read a few minutes ago that I thought was profound and is what I came here tonight to share … and also VERY good medicine for all of us:

It was beside the bestseller for a long time, BEATING CANCER WITH NUTRITION by Patrick Quillin [which for years has been a good read, whether we have cancer or not]. The words are beautiful and I wanted to share them with all of you:

There is a mysterious yet irreplacable force in all of life that “knows” how to heal itself. The broken bone, the scab on your arm, the baby being made in that woman’s uterus, the ability of children to regenerate a severed fingertip — all tell us that Nature has an incredible plan for good health and long life. But only if those same natural forces within us have been given the raw building blocks of physical nutrients and metaphysical thoughts and feelings, plus relative freedom from toxic blockages.

Nutrition helps to nourish the “non-specific host defense mechanisms” in the human body that allow us to prevent and sometimes reverse illness.

Keep the faith. It takes time and tweaking, but we CAN get there!

AF

[CurlyinNC]

Thanks for the input on the Vit D. I had doubled my dosage for a while, but had been experiencing stomach cramps, someone here on the forum recommended eliminating the Vit D, which I did for a while. I started back with a smaller dosage and started taking it at night instead of morning. I would rather not eliminate it since I know it helps me in other ways. Maybe I’ll take a short hiatus and see if it makes any difference. Has anyone tried the Vegan Vit D? I recently read about it on The People’s Pharmacy.

Diagnosed with RA 10/2014 with very positive anti-CCP. Rheumatoid factor was negative and continues to be negative.
Began abx treatment 12/2014.
Currently taking minocycline 100 mg bid M-F, diclofenac 75 mg as needed, probiotics, various other supplements.

[Cathlo]

Hi Curly,
I reckon I am at a similar stage of AP to you – and sympathise, and can only offer my current situation rather than experience or advice.
I am three and half months in to AP – I was on100mg MWF until three weeks ago when my UK doc upped it to 100mg, MTWTF.
After an upturn in how i felt in December, I seem to be on a bit of a down. Over Christmas I was very optimistic – considerably less aches/pains in big joints. But from beginning of Jan, aches/pains in hips/knees/ankles returning. I wasn’t sure if this was due to increase in AP dose/herx, breaking non-gluten/dairy/sugar diet over Christmas (frequently 😉 ), or just a worsening of symptoms. However, for a week I have been on a very strict diet, almost elimination – only veg/fruit & some non-gluten grains. No oils, caffeine, no alcohol 🙁 – BUT in five days I feel notably better and the swelling in my thumbs has come down. I will see how I fare as I reintroduce foods, and will also consider lowing mino dose.

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.

[Author]

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