Health Update

For several months my pain has been manageable. Nothing has been out of control as far as swelling and I’m used to my other aches and pains. But lately, something has been creeping in. Testing just revealed that I am battling a parasite. To say I’m freaked out is a huge understatement. A parasite was discovered last year. I dropped raw milk out of paranoia and followed an herbal protocol that did the trick. I looked at my notes and it happened around this same time last year. Certain parasites can come back each year despite treatment and there are close to a 1,000 that can infest the human body. I play in dirt (compost) when I garden, wipe a kid’s behind everyday, clean a little box for two cats, handle raw meat, vegetables from my garden, farmer’s markets and the grocery store, I eat at restaurants, and I am a freak about washing hands. I could try to figure out where this critter came from and go crazy cleaning and generally freaking out. Or I could do what I am supposed to to get rid of it (going herbal route) and support my body the best way I can. I knew something was amiss though due to pain all over rapidly increasing over the past couple weeks. My boxing gloves are on.

A recent visit with my rheumatologist to go over current lab work revealed MCV and MCH still just above normal. My doctor said that since they are not too high above normal, despite being up there for years, and because the additional blood work he had done came back normal, he is not worried.

blood work 2014

He and I got to chatting and I said that sometimes I wonder what in the world I will feel like when I am sixty if my body is doing this kind of stuff at forty. He responded with a sympathetic “yes…” that trailed off. It was not what I was looking for. I wanted to hear hope. I wanted to hear, “Oh, you’ll be fine!” accompanied with a smile. Honestly, I wanted to hear it even if he didn’t think it was true. Is that bad? I have hope. I fight hard against seeing this as a downward spiral even though people all around me are getting worse. But on the other hand, I do appreciate my doctor’s honesty. No mention was made of my antibiotic protocol (now one year and four months into it), so I am continuing with it. I am scheduled to see my doctor and have blood work done again three months from my last appointment.

Another flaky, red patch has come about as well, and this time in a more prominent spot. Lovely.

psoriatic skin

Current state of my toes and nails affected by psoriatic arthritis. Thank God for nail polish.

psoriatic feet

Shoes I am getting rid of this week thanks to psoriatic arthritis. Can we please have a moment of silence to mourn.

high heels

I can still smile about it all and sport a pair of Naot heels when I want to. Thank God.

mirror

When I was at my chiropractor’s office yesterday, my four boys were waiting in an area outside the room. One was drawing, one had his eyes closed, and two were on electronic devices. I was sitting on the table in the room with my doctor with my back to the door that was open. I hadn’t noticed my four year old come in and sit down. I had just told my doctor when asked how I was doing that I was experiencing increased pain, blah, blah, blah.

And then I felt a little hand on my back rub up and down a couple times. I turned around to see my little guy. He looked at me and said, “your back hurts?” Oh, it broke my heart. I wanted to take my words back. I am attempting to make the best of the situation by embracing the fact that hardships help teach compassion. My little guy does not have touch at the top of his love language list, so it means all the more to me that he came over and put his hand on me out of compassion.

I find comfort in my pursuit to demonstrate joy to my children despite an uncooperative body.  Because dwelling on what a drag it is to deal with pain and be hyper conscious about food and products is not going to help produce fruit in anyone. Does anyone else struggle with how our children process what it means to have a parent that is not fully well?

Sometimes, You Have to Ask

I saw my rheumatologist for a three month follow-up recently. Incidentally, the day before my 40th birthday. Do I know how to get a party started or what?! While I was sitting in the waiting room, two well-dressed ladies came in and asked the receptionist if it would be possible to see my doctor. They were clearly drug representatives packing freebies. I had already been waiting forty-five minutes at this point, as had the gentleman a few seats away from me. I couldn’t help but think–I hope you are seeing the doctor after me!

Within five minutes, they were called to come back. I said to the gentleman near me, “I wish we were called that quickly.” He agreed and we began to talk. It was nice to swap personal health facts and experiences with someone else that has dealt with wacky pain and inflammation. It was nice because he “get’s it” and because we both had compassion for what the other has endured. He wasn’t much older than me, drives a truck for Walmart, had a knee require surgery, soon after bodily joint pain and stiffness entered the scene and now for the past few years he has been on methotrexate and a biologic that he self injects, and has had a second knee surgery. The drugs are not getting the job done and he lives in pain.

I told him my body really let go after my fourth c-section, but because I was nursing, I researched alternative approaches. Shared with him the importance of looking at what you eat. He was surprised to hear that eliminating certain foods or chemicals can help take a load off your system. He had never heard that sugar was inflammatory. (Not only that–it’s like crack, people! Try to give it up for a month and tell me how you do. 🙂 ) I told him that I have done two different approaches with antibiotics. The first I said was nine months long, tough at the outset, progress was very gradual but awesome, and following it, I was drug-free and functioned quite well for a year and a half. Praise God. Now I have begun a second protocol and have been at it for a year, things are much better now than a year ago. He had never heard of the approach. I told him to check out the Road Back website. He was very interested and hopefully encouraged by the fact that I had experienced positive results. He was there to see my doctor after me. When I saw my doctor, I let him know his next patient might have questions. 🙂

Here are my current lab results from 10/2013 if you are interested:

Image

Not bad, eh? Except for that MCV number. My doctor said that meant enlarged red blood cells. “Which could mean what?” I asked. He said, “Could be thyroid, but we’ve checked that and you’re fine, alcohol is not a problem for you, labs show liver and kidney look good, could be your B12 or folate levels…let’s get that checked today and I will have the nurse call you with the results.”

Here’s a tip for anyone coming up on a birthday. Don’t consult with Dr. Google regarding anything about your health until waaaayyyy after your birthday! Note to self. I couldn’t help myself and looked for information about enlarged red blood cells. I’m not going to even write about some of the things I read about. I remember seeing the MCV number high a long time ago on my lab results in addition to MCH, but I recall my doctor not seeming concerned. I dug through my copies of blood work going back three years. The number has been up there for the past three years for both MCV and MCH. Interesting to me that it has my doctors attention now.

Lab results from three years ago (10/2010):

lab results 10/2013

In looking at my lab results from my primary care doctor, I discovered that my B12 and folate levels looked good two years ago when they were checked and I have supplemented with a multi-vitamin daily since then and have maintained a healthy, whole-foods diet. I’m guessing my levels will still be fine.

My doctor originally told me that he would keep me on minocycline for up to a year. I’ve passed the one year anniversary and was pleased that he didn’t mention taking me off and told me to schedule a follow-up three months from now. I am going to continue the minocycline indefinitely for now, as well as the sulfasalazine. I realized I wouldn’t see my doctor until the new year (hopefully won’t have to before!) and wished him a Happy Thanksgiving, Merry Christmas and Happy New Year before going next door for more blood work.

Just for kicks, I did an online search today for information about long-term antibiotic therapy and this came up on page one of my search hits from Doctor Oz:

http://www.doctoroz.com/blog/jacob-teitelbaum-md/antibiotics-helpful-rheumatoid-arthritis

Go Doctor Oz and thank you for spreading the word!

And this:

http://recoveringarthritics.blogspot.com/2009/11/three-recovering-arthritics.html

She might as well be me talking!

I also searched the list of abstracts presented recently at the American College of Rheumatology Annual Meeting in San Diego in hopes that this treatment is being investigated further. Unfortunately, not really. To me, it’s heart breaking. I found numerous studies involving biologic drugs, however. I found the following chart in one of the abstracts. The chart displays the average copay for drugs used for RA under Medicare–which is $250-$650 for a biologic. Plain crazy. I scrolled down and found minocycline–$7. So, what are the chances of pharmaceutical companies funding research studying long-term antibiotic protocols and their role in certain autoimmune diseases? I’m thinking next to none because they stand nothing to gain! Sad.

Table.   Coverage for Rheumatoid Arthritis Drugs in U.S. Medicare Part D Plans.

Drug

 

Plans covering drug

(%)

 

Plans covering drug without prior authorization

(%)

 

Plans Charging Percent

Co-insurance

(%)

 

Mean

Co-insurance

(%)

 

Average Copay

Mean (SD)

($)

 

Biologic
Abatacept

54

 

4

 

100

 

30.1

 

601 (22)

 

Adalimumab

100

 

7

 

100

 

30.0

 

583 (12)

 

Anakinra

40

 

4

 

100

 

29.9

 

517 (19)

 

Certolizumab

59

 

1

 

100

 

29.6

 

650 (16)

 

Etanercept

100

 

7

 

100

 

30.0

 

547 (11)

 

Golimumab

42

 

1

 

100

 

29.6

 

580 (17)

 

Infliximab

100

 

7

 

100

 

30.0

 

255 (5)

 

Rituximab

100

 

8

 

87

 

29.5

 

611 (25)

 

Tocilizumab

40

 

1

 

99

 

29.7

 

335 (14)

 

.
At least 1 biologic DMARD

100

 

9

 

87

 

30.3

 

275*

 

.
Non-biologic
Azathioprine

100

 

34

 

10

 

18.1

 

7 (1)

 

Cuprimine

60

 

60

 

59

 

30.6

 

83 (6)

 

Cyclophosphamide

94

 

2

 

20

 

27.4

 

32 (3)

 

Cyclosporine

100

 

12

 

22

 

25.1

 

34 (2)

 

Hydroxychloroquine

100

 

100

 

10

 

18.1

 

5 (1)

 

Leflunomide

100

 

100

 

13

 

19.3

 

11 (1)

 

Methotrexate

100

 

85

 

13

 

19.8

 

5 (1)

 

Minocycline

100

 

94

 

10

 

18.1

 

7 (1)

 

Sulfasalazine

100

 

100

 

10

 

18.1

 

5 (1)

 

.
At least 1 non-biologic DMARD

100

 

100

 

11

 

18.2

 

4*

 

.*mean copay of least expensive drug covered

Here are studies discussing the use of minocycline for rheumatoid arthritis from pub med:

http://www.ncbi.nlm.nih.gov/pubmed/14528503

http://www.ncbi.nlm.nih.gov/pubmed/10047718

The following is taken from:

British Journal of Pharmacology © 2013 The British Pharmacological Society.

Minocycline is a second-generation, semi-synthetic tetracycline that has been in therapeutic use for over 30 years because of its antibiotic properties against both gram-positive and gram-negative bacteria. It is mainly used in the treatment of acne vulgaris and some sexually transmitted diseases. Recently, it has been reported that tetracyclines can exert a variety of biological actions that are independent of their anti-microbial activity, including anti-inflammatory and anti-apoptotic activities, and inhibition of proteolysis, angiogenesis and tumour metastasis. These findings specifically concern to minocycline as it has recently been found to have multiple non-antibiotic biological effects that are beneficial in experimental models of various diseases with an inflammatory basis, including dermatitis, periodontitis, atherosclerosis and autoimmune disorders such as rheumatoid arthritis and inflammatory bowel disease. Of note, minocycline has also emerged as the most effective tetracycline derivative at providing neuroprotection. This effect has been confirmed in experimental models of ischaemia, traumatic brain injury and neuropathic pain, and of several neurodegenerative conditions including Parkinson’s disease, Huntington’s disease, amyotrophic lateral sclerosis, Alzheimer’s disease, multiple sclerosis and spinal cord injury. Moreover, other pre-clinical studies have shown its ability to inhibit malignant cell growth and activation and replication of human immunodeficiency virus, and to prevent bone resorption. Considering the above-mentioned findings, this review will cover the most important topics in the pharmacology of minocycline to date, supporting its evaluation as a new therapeutic approach for many of the diseases described herein.”

Found this on minocycline and ovarian cancer:

http://www.ncbi.nlm.nih.gov/pubmed/23593315

Unfortunately, there is a great deal of information out there that our doctors are not telling us about. I’ve never had a medical doctor talk to me about what I eat and it’s role in disease. I’ve never had a medical doctor talk to me about the importance of managing stress and it’s impact on my body. And antibiotics as a treatment option are not being offered as readily as biologics, if even at all. Take the patient I spoke with in the waiting room for example. We have the same rheumatologist and he has never heard of antibiotics as a possibility. And he has been dealing with wonky joint pain and inflammation for a few years now. Antibiotics have certainly not been the end all be all for me. And they come with their own scary list of side effects. But my journey with them has changed my life for the better and it’s important to me to share that in the hopes it could help someone else.

My Life in the Before and After

I love watching design shows. Love. Can’t get enough. I really love seeing a room transformed into something that brings the homeowners joy and functions well for them. I’m having the time of my life making our own house a home. It is something that gives me great pleasure (thank you very much, disease, you can’t take that away). It is good medicine to love your surroundings or at least feel at peace in them, if you ask me.

 And who doesn’t love a good before and after?

Unfortunately, with these crummy autoimmune diseases spawning all over the place, the before and afters aren’t always so pretty. I gathered a few disease related before and afters of my own to share. Sorry, have to show the toes again. If I am willing to once again throw my nasty toes up on the internet, you know there is love involved. I get more Google search hits for things toe related than anything else.

BEFORE

(Pre-antibiotic protocol)

IMG_0006

AFTER

(Five months into the protocol)

IMG_1931

BEFORE

neck

AFTER (Five weeks later)

(Large number of people praying for me, acupuncture, chiropractic adjustments, limited activity)

second MRI

BEFORE

(Pre-disease)

IMG_1107

AFTER

(The closest I can get to a sexy heel these days without my feet screaming, “Mercy!”)

IMG_1111

BEFORE

(My diet pre-disease consisted of artificial colors, artificial flavors, sugar, dairy, grains)

M&Mgroup

AFTER

(Post-disease I avoid all of the above as often as possible because it can make you sick!)

BEFORE

(View from my back porch and fog that causes me crazy pain)

IMG_1200 AFTER

(Relief…)

IMG_3866

What brings me joy amidst having a ridiculous disease.

BEFORE

IMG_4151

AFTER

(I still want to paint the ceiling. My neck doesn’t though.) 🙂

IMG_1587

And just for fun, because I have no shame now that you’ve seen my ugly feet. 🙂

BEFORE

IMG_1052

AFTER

(Someone at the mall did my make-up in this photo and I can not seem to reproduce the same look for the life of me. Darn those toxic, but beautifying products that I chose not to purchase!)

IMG_3846

Praying this finds all of you feeling the best you possibly can in the after!

AP Diary Part Two

I have enjoyed close to a year and five months of being pharmaceutical free. Glorious. Joy beyond words. I got a great part of my life back. During the nine months on my antibiotic protocol approach prior to this, I experienced a return of function to joints that were frozen, extremely painful and swollen. My body responded exactly as those that had gone before me with the approach said it would. It got a lot worse before it got better. New joints swelled, my butt got kicked with fatigue and my mind was extremely cloudy. It was a very rough ride. But slowly, ever so subtly, swelling disappeared, I regained movement in the frozen joints and my mind became sharp and clear again. It was really amazing and I am glad I took the leap with this approach. If I hadn’t, this would have never gotten done. 🙂

Bacteria is a resilient monster. It dodges and ducks and morphs in ways that blow my mind. So, I knew the possibility of another long round with antibiotics could be a part of my future. I hoped not. Of course. But always knew I might have to keep the battle going.

Enter my baby toe…

Image

I tried to ignore it. But squeezing it into a shoe is an uncomfortable reminder that something is having it’s way with you. Then there was the arrival of a double ear infection and a sore throat. A sign to me that the bacteria was back at work. I was plagued with frequent ear infections right up until my long run with the antibiotics and had not experienced one since I began the protocol. So the painful arrival of a double one with the throat along for the ride got my attention. What followed was a two week long headache. I’ve never experienced anything like it. I woke up with it and went to bed with it.

I had a follow up with my rheumatologist this week. I told him about the recent activity–right ankle is feeling bursts of fire, but not swollen, base of spine is acting up again and shooting pain down my rear, wrist and thumb on left hand, and let’s not forget my baby toe. They all started a party around the same time. I still function pretty fabulously and I can tolerate the pain. Praise God. But I had a nagging feeling, I better bring in the big guns.

My doctor is used to me not asking for drugs. I just check in with him every three months and have blood work done, which is normal across the board as of three months ago. Anxious to get this week’s results back. But this time I asked him what his thoughts were about me giving antibiotics another go. There was no hesitation and before I knew it I was walking out with a prescription. It took a couple of days before I filled the prescription. I read over my AP diary, prayed and spent time in the Word of God. I also had to work through my panic over trying an antibiotic in the tetracycline family this time–minocycline–since I had a severe allergic reaction to tetracycline itself in seventh grade. I will never forget shivering under an electric blanket on high due to a high fever and being covered head to toe in a rash that itched to kingdom come.

I just took my second antibiotic and hope to again keep up with how my body responds in my AP diary. It was really helpful to be able to read through again and hopefully it will be helpful for anyone that wants to follow this approach. There seems to be a great deal of skepticism among autoimmune bloggers over this approach. And to be very honest, my feelings were hurt by a fellow blogger that posted this:

“With RA, some of the ”cures” most frequently recommended by people with no medical credentials are”

Gin-soaked raisins
Antibiotic protocol (Road Back)
Marshall protocol
Treatment for Chronic Lyme Disease
Cider Vinegar
Honey
Copper Bracelets
Bee Stings
Certo Pectin
Magnets
Diet

Did you catch it? My bacteria butt kicking approach that gave me back the function of my body got listed with honey and magnets. Ouch. It hurt and saddened me that a large readership might be turned off to even investigating the approach. This approach is, however, recommended by several doctor with medical credentials.

And in case you are interested…

The following is taken from a lecture by the rheumatologist who pioneered antibiotic therapy, the late Thomas McPherson Brown, M.D., spoken at the Huntsville, Alabama Family Practice Center.

Tips on Starting Antibiotic Therapy*

Hypersensitivity/autoimmune states are infectious in origin; thus, suppres-sion of the antigenic source causing the patient’s hypersensitivity state is the focus and framework for treatment.

The treatment goal is direct suppression of antigen (in early disease) or suppression of antigen mimicry through tying up receptor sites (late disease / auto-immunity) with a dose of medication low enough to avoid exacerbation of the hypersensitivity state.

* A probing patient history may reveal a triggering event such as an injury, chemical sensitivity or illness. Finding such a trigger may provide information on a contributing antigenic source. Testing for organisms can be helpful in confirming the involvement of a pathogen in the disease process.

* Apparently unrelated infections such as dental problems and sinus infection complicate the antigen pool and compromise an already stressed immune system.

A second infection can be a cofactor in the disease and an additional source of antigen: e.g. strep, chlamydia, candida, or chronic sinus or bladder infections. Treat focal infections first or concurrently.

A washout period of several weeks to a month prior to beginning antibiotic therapy is preferable; however not all patients will be able to tolerate such a step. In those who opt for the washout, low dose prednisone may be used temporarily to help control inflammation and pain medications can help keep pain to a manageable level.

Pursue treatment long enough (in early disease) to eventually suppress antigen formation or to interrupt chronic process (in late disease) to allow the host’s immune system to dominate.

* Long term disease may require lifetime treatment.

* Treatment histories of >20-30 years currently exist with disease control and no negative side effects from the antibiotics

* Patients need to maintain a healthy life style with balanced meals, exercise, active stress reduction and adequate sleep in order to support the immune system.

* Vitamins and supplements which strengthen the immune system are helpful.

Daily NSAIDs are necessary to suppress inflammation and increase the effectiveness of the antibiotic by allowing it to penetrate the inflammatory barrier.

Acidophilus supplements will help maintain a normal bowel flora and counter an overgrowth of candida.

* To strengthen muscles and increase joint stability, rehabilitation should begin as soon as the disease shows signs of quieting, also decreasing the chances of joint disfigurement.Massage may be begun immediately to relieve trigger points in soft tissue adjacent to irritated joints, to retard contractures and provide pain relief.

Treatment response is generally slow and subtle although some patients see an immediate lessening of pain. Six months to a year is not an unusual time required for significant improvement.

It is not unusual to see a preliminary worsening (Herxheimer reaction) when antibiotics are begun or when treat-ment adjustments are made. The severity of the reaction is usually dose related. Although uncomfortable, this reaction is a sign the offending organism is being reached and is a good sign.

Laboratory parameters can improve before clinical improvement is seen or vice versa. Treatment of an infection with antibiotic therapy is supported by fall a in RF and acute phase reactants.

Depression, memory loss and mood swings are symptoms of the disease, possibly due to accumulation of antigen.

Some generics are ineffective; brand names are more costly but strongly recommended. Adding d.a.w. to the prescription will insure the patient receives the brand name of the drug.