Protocol/Battle Plan


ALLOPATHIC


CURRENTLY:

Minocycline 100 mg – once daily

(Began 10/18/2012 – present day)

Sulfasalazine 1000 mg – twice daily

(Began 6/28/2013 – present day)

Meloxicam 7.5 mg – once or twice a month

(Took daily: 6/6/2013 – 8/17/13)

FORMERLY:

Rifampin 300 mg – once daily

(Began 8/5/2010 – 4/29/2011)

Azithromycin 250 mg – Mondays and Thursdays

(Began 8/5/2010 – 4/29/2011)


NATUROPATHIC


CURRENTLY:

* High quality multivitamin

* Vitamin D3 – 2,000-4,000 iu (My D level is through the roof! Woohoo!)

* Vitamin C (ascorbate powder, corn free) – 6 grams (3 divided doses)

* High quality probiotic

* Omega -3 oils – 4,800 mg – (2 divided doses)

* Water – LOTS of it!

* Whole foods diet (Plenty of it organic, local). Grain, gluten, dairy, sugar, soy, artificial and natural flavor (can also have MSG) free as much as possible. This makes a HUGE difference! Restaurant food and anything processed or pre-packaged is not anyone’s friend!

* Deep breathing, stretching, prayer, quiet time

Dry brush skin

* Rebound

* Epsom salt bath (Hot bath, cold rinse when I can get one in.)

* Fresh air and sunshine and barefoot walking on the earth (Wonderfully therapeutic and free!)

* Good night of rest (As often as possible.)

* Taking time to do things I enjoy/relieve stress

Once every four-five weeks 

* GENTLE Chiropractic adjustments (It’s keeping me moving! And it has helped me avoid surgery (thus far) for a bulging disc in my neck that my neurosurgeon said required surgery.)

When the pain becomes overwhelming

* Acupuncture (Incredible results! Also a key component in my ability to avoid surgery on my c-spine.)


Diagnosed in July 2009 with seronegative rheumatoid arthritis. Diagnosed in September 2010 with psoriatic arthritis. Symptoms first evident in June of 2007. The naturopathic protocol above was designed specifically for me by my Doctor of Naturopathy–a Registered Pharmacist, Board Certified Clinical Nutritionist, Homeopath and Doctor of Naturopathic Medicine in an attempt to help manage my chronic illness on a daily basis. My vitamin, supplement and diet protocol has gone through many stages and trials and still changes from time to time depending on my body. Over the past few years, I have withheld a vast multitude of various foods and products from my diet and my body to help relieve the burden on my body and to investigate whether or not certain foods and chemicals (dyes, fragrances, preservatives) cause me trouble. They do! I have also done numerous detox protocols and have been tested for toxicity from heavy metals, chemicals, food. All present problems on some level. My current protocol is currently helping to keep the inflammation mostly at bay (minus days when crazy weather blows in, I go crazy and eat “bad” food with slight abandon, or my body goes wackadoodle with inflammation), my energy levels up and my immune system strong. (Ha, ha, did I just call my immune system strong?!)

I have also followed an intensive gut healing protocol to help support the integrity of my digestive system since 70% of our immune system stems from there. If even a pinhole size lesion occurs, any type of food can potentially aggravate the body. I had an Elisa Act blood test done and learned that my immune system was reacting negatively to green tea, ginger, almonds, flaxseed oil, and red grapes to name a few. Those things were in my diet in huge amounts! They are supposed to be good for you, but they were making my body irritable due to gut penetration I believe. The blood work also revealed that my immune system reacted negatively to chemical dyes, formaldehyde, silicone (often labeled dimethicone on beauty products), and turpentine.

On August 5, 2010, I added an antibiotic protocol because diet and supplements were not getting the job done on their own. And believe me, I tried. But something else was going on. I struggled for a long time over the pharmaceutical route I would take because on the one hand I had the immune suppressant/biologic drugs and a cocktail of other things that would probably/hopefully help, but not truly address what was causing the inflammation, or I had a long-term antibiotic approach, involving the very type of drug I was trying to keep out of my kids and I the best I possibly could, that might address and battle what was destroying me and my bones and tendons. I had to make a decision though because whatever was going on needed to be stopped.

I then read the work that documented that roughly 10,000 patients had benefited from a long-term course of antibiotics at the core of their protocol. On the Road Back website, I found a multitude of others both young and old that have benefited. I’ve connected with some of them and they are extremely helpful and have incredible information to share. There are forums for asking all kinds of questions and places to read testimonials. Antibiotics are known to possibly make the going very tough at the outset (which is a good sign with this approach and happened with me), with improvements gradually appearing over time (months, sometimes even a year or more). It is known to take longer for some that have experienced the disease more intensely and for longer.  At the same time, I scoured my insurance plan for information on biologics and other autoimmune related drugs to know where I stood if I needed them. And I flooded my body with good things–whole organic foods, local meat and eggs, vitamin C and D, fish oil, healthy fats, probiotics, etc.

My current rheumatologist (God love him!) prescribed two antibiotics and I gave them a go for nine months to potentially kill mycoplasma–which is the name given to a unique group of microorganisms that fall in the category between the bacteria and viruses. I chose antibiotics because I believe that mycoplasma had set up camp a long time ago in me.

“Mycoplasmas, unlike viruses, can grow in tissue fluids (blood, joint, heart, chest, and spinal fluids) and can grow in living tissue cell structures without killing the cells- as some viruses and bacteria do. Mycoplasmas are frequently isolated from the oral or genito-urinary tracts of normal population and are found to infect females four times more often than males, which just happens to be the same incident rate in rheumatoid arthritis and other related disorders. Mycoplasmas can attach to specific cells without killing the cells and thus their infection process can go undetected. No symptoms suggests no disease. In some people the attachment of mycoplasmas to the susceptible cell membranes acts like a living thorn, a persistent foreign substance, causing the host’s immune defense mechanism to wage war. This allergic type of inflammation often results in heated, swollen, and painful inflamed tissues. In such cases the mycoplasma may not be isolated from the inflamed tissues but is detected by the host’s serum antibody level. A positive response would indicate that mycoplasma has infected the host.”

I experienced what I believe are remarkable improvements. Pain and inflammation diminished (slowly, but surely) and range of motion improved in some areas and returned completely in others–Praise the Lord! My rheumatologist told me he has used antibiotics as a last line of defense with his other patients, after they have tried all of the other drugs. I asked him about his results and he said they were good. So, I became his first patient to try it as a first line of defense. But I had to ask. He calls it an alternative therapy. It was a miracle in my life.

While on antibiotics, I took high doses of probiotics and supplements to support my liver. As poisonous as the antibiotics were, I fared well while on them in the grand scheme of things. I recently completed another round of a supplement protocol to cleanse my liver and repair my gut to help detox and heal from any damage that occurred from long-term use of antibiotics. (December 2011-February 2012)

As of October 18, 2012, I have begun a second antibiotic protocol. After enjoying over a year and a half without any medications and staying true to a whole foods diet (gluten and dairy free), I am giving this approach another go due to inflammation and pain resurfacing in my body.

As of February 21, 2016, I am still on the same antibiotic protocol I began over three years ago. It has truly been a saving grace in my life and I am thankful that I have had success with another antibiotic protocol. Figuring out through trial and error (and stubbornness to give up certain foods), I have discovered the beauty of eating well and eating what makes my body perform best. Gluten and most grains are not my friends. Down right enemies at times in my past. Sugar. The devil. I cook most of my food and tread with caution when I eat out. Let’s just say that sometimes my body will down right reject what I consume even when I’m trying to be careful!

8 thoughts on “Protocol/Battle Plan

  1. Hello, I have only just recently come acoss your Blog.I just wanted to say Thankyou for sharing. I have RD and am on Humira, it is not working. My blood results steadily keep going higher and Higher. I have turned down methotrexate. I asked my Doctor for Minocycline, I am taking 100mg x2 per day, and praying this will work. I cant seem to find a doctor in London or newyork who has experience at following this protocol. Do you know of any. I hope things are going better for you,
    Sandra xx

    • Hi Sandra!

      I hope and pray that you respond to the minocycline. It is hard to find a doctor not only willing to go the antibiotic route, but one is who experienced and knowledgeable about the approach. The Road Back organization is a great place to try if your haven’t already. It is the only place I know of that keeps a data base of doctors that treat with an antibiotic protocol. It’s how I found my doctor. But the pool of doctors is small. I was only given one doctor’s name for my city of over a million people. I know some people have to drive hours to see a doctor. I hope they can help! Please stay in touch! I would highly recommend reading everything you can on their site.

      Glad you found me. At this moment, I can’t complain and am grateful for how I feel. 🙂

      I copied this from their site for you:

      Locating a physician for treatment

      You can access physician contact information by emailing apdoctors@roadback.org * once you are familiar with antibiotic therapy as used in the context of rheumatic disease. Include your geographic area and information about your diagnosis and a volunteer will return your email.

      Access the APNC (Antibiotic Protocol Network Contact) nearest you for additional support.
      http://www.roadback.org/index.cfm?fuseaction=community.sub&subgroup_id=5

      Be aware that each practitioner might have his/her own protocol preference or approach treatment in different ways. Some are very committed to antibiotic therapy but offer it in conjunction with more traditional medications, others are very supportive of the therapy in combination with a holistic approach, etc. This is not a one size fits all therapy and it may take trial and error to establish the most effective dose and schedule for an individual. Also, a patient’s needs may change and the dose and timing might be adjusted up or down with a physician’s guidance. In all cases, we advise that each patient seeking antibiotic therapy is fully informed to become an active participant in his/her own health care decisions.

      * You should receive a reply within 48 hours. If not, check your spam box as it may have landed there. Please resend your email if necessary.

  2. Hello Kelli
    Thank you for your reply. I did contact roadback but the name they sent me seems to not do it here in London anymore. I will keep searching. I started to feel much more pain in my hands after about five days on Minocycline. It is about three weeks roughly now and I am making notes daily on pain level etc I seem to have less fatigue, this was a huge issue for me. Feeling and deciding every day what I wanted to achieve but reality being that i felt I was able to do little due to pain and fatigue. I still have pain, possibly a little less, and more energy, so I am very hopeful that this could work for me.
    Hope you are ok.
    Love in Christ
    Sandra

    • Sandra,

      I’m bummed to hear that your referral was a dead end. 😦 I was afraid your options would be slim. I really hope you are able to find someone to support you with your approach.

      I would highly suggest connecting with people on the Road Back forum if you haven’t already:
      http://www.roadback.org/forum/viewforum.php?f=1&sid=31f351db59d8fda7692cf6c54f44414f
      They can be an incredible source of support and information as you navigate through this approach.

      It helped me personally to remember that the approach can bring more pain initially, and the improvements can take months. I’m so glad to hear you are keeping notes. It has really helped me to have a record of my progress and setbacks.

      You are in my prayers, Sandra!

  3. Hello Kelli
    I am a little (no very) excited. I think I may have found a Doctor. I have an Appointment mid december in England. It is at the Breakspear clinic. I am not sure what they will be like but they at least will do all the bacteria and mycoplasma bloodwork etc.
    Is there somewhere on your blog that you list what vitamins etc you take, and also what is the best probiotic?
    I am also trying to sop all the bad chemicals, food allergies etc. It sometimes feels as if all this is like a full time job.Also so boring to have to spend sooooo much time on research etc.
    I have started reading info at the road back, so thank you for giving me that information. I think I told you I felt much worse with Mino for the first ten days or so. Yesterday I woke up, and has so much energy, little morning stiffness, moderate pain. I was so excited and was back to being a full of life, supercharged laughing busy, happy person. I was a bit shocked as I had actually forgotten for a while that, that is the REAL me, before RA. Today I don’t feel as great but I think I overdid it yesterday, in my excitement.
    Today I will strive to pace my self regardless of how I feel, and take special time to stay in the moment. RA is a terrible disease but I have learnt a few lessons from having it, like appreciating what I do have etc.
    Anyway great to hear from you, Stay well
    Love
    Sandra

    I

    • Sandra,
      You made my day. 🙂 I am so happy to hear that you may have found a doctor and a place to help you! And you felt happy and full of life! Aren’t those days the greatest gift with this crummy disease?! I’m with you on having learned to appreciate what we do have.

      I have info on what I take under my protocol/battle plan tab (scroll down and it’s there). What I take can vary a bit. Probiotic is a must for us. There are plenty of great ones out there. For a few years now, I have used the one my Doctor of Naturopathy makes. He has a video discussing probiotics here: http://askjoedimatteo.com/products/probiotic-essentials-120/. (They happen to be on sale until Nov. 10) His site has great information concerning our health and best way to nourish body. He is also a pharmacist and clinical nutritionist.

      Yay to eliminating the bad stuff! And you’re right–it sure does feel like a full-time job! The benefit to eating well and making the effort though is you feel better and look better! It has become a way of life for me that I wouldn’t trade. It’s challenging at times though!

      Thanks for letting me know about your journey with all of this. We’re in it together. 🙂

  4. Kelli
    Thank you for your kind response. I was soooo happy,I just felt a deep sense of gratitude and awe that it was only GOD that gave you to me. That you and Roadback and also RA warrior came into my life. That God really did show up in my pain, loneliness of this disease, fear of the future etc. He is so amazing as are you for allowing yourself to be used by Him.
    Thank you for giving me courage to keep fighting, and for touching my spirit to remind me that “He knows the plans and purposes for my life” x
    Sandra

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