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?

Beware the Purple Potion

A few days after our Thanksgiving gathering and exposure to sickness my youngest son looked like this:

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A few more days and he looked like this:

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both eyes red

and after a couple weeks of misery that included goopey eyes that itched and burned,

his eyes look like this:

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and just days before Christmas,

his cough finally relented and he looked like this:

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Playing the part of Joseph

I’m so happy to be on the other side of this battle. I nourished and supported his little body and environment in every way that I knew how.  To see him still become so ill was really hard–especially because I work hard to nourish him and keep him healthy. I tried to see it as a positive, as an opportunity for his developing immune system to go to battle and come out stronger as a result. I told him to tell his body to fight and stay strong at heart.

To add to this, my husband also became very sick. Husband has been like man of steel. Seriously, the man never gets sick any more. For several years now, he has taken the vitamins I recommend, given up a lot of garbage (stuff you can’t really call food), and he eats what I cook from scratch. Since we’ve been married, his cholesterol levels have come down and returned to normal, he gave up the inhaler he has always used, he went from being lactose intolerant to being able to consume dairy without unpleasant side effects, and he stopped getting the nasty, blow a lung coughing kind of colds that he always got when we were dating. The man sounded like a barking seal reliably each year. But he hasn’t sounded like that or come down with anything like that in years.

As a result, he got really used to feeling good. I know because of how he reacted to becoming sick. He was not happy about the situation and everyone in the house knew it. It was rough-for both of us. His cough was unrelenting and his patience for it was slim. He consulted with a friend of his who is a doctor and this is one of the items that was recommended to him to help him get through the nighttime coughing:

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My husband went to the store and purchased this. I warned him beforehand it would be a bottle of poison, but he trusted the medical professional. He did not look at the label in the store and brought his purchase home. In addition to the sleep aid there are chemical preservatives, artificial colors, artificial sweeteners, and corn syrup in the mix. This is the solution when people are ill?

I’m not going to lie, it irritated me that my husband purchased and considered using a product like this after everything he has learned. Is it that worth it? My body reacts to the stuff in this purple formula like it is poison and you still want to chug it? And it definitely irritates me that this is what a well respected doctor has been taught to recommend. I told husband to consider having a glass of wine before bed instead and pointed out that his purple bottle of chemicals has 10% alcohol in it. He doesn’t drink, so I figured it wouldn’t be too tough to “knock him out” so he could sleep.

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I’ve mentioned that Red No. 40 is banned in Europe. Enough said. High fructose corn syrup suppresses the immune system and promotes inflammation among other things. According to the Cosmetics Database Polyoxyl 40 Stearate (listed as PEG – 40 Stearate) is a moderate to high hazard ingredient. It mentions cancer, developmental and reproductive toxicity, organ toxicity, and irritation concerns, and has been found to cause tumor formation at moderate doses in rabbits. (poor rabbits…) Sodium benzoate has the ability to deprive the cells of oxygen, break down the immune system and cause cancer. And saccharin showed up on a blood test of mine as antagonistic to my body, as did the colors. And did you catch the ingredient “flavor”? What in the world is flavor? What chemical concoction might that be? And shouldn’t it be required to be listed?

What is all of this doing in something people take when they are not feeling well and need some sleep? Why is a bottle of this even legal?

It was frustrating to see my little guy and husband get so sick despite my best efforts and back flips to get them well. But thankfully, I never felt a twinge of anything. I ramped up my own immune boosting protocol and ate lots of live food in the process because I was playing with snot and getting coughed and sneezed on by my little guy–and big guy–and hoped for the best! Christmas definitely came a little early for me in the way of wellness.

My response to my son and husband getting very ill was not so desirable to my husband. I went commando in my attempts to get them better. My husband already thinks I’m an extremist when it comes to eating well and taking care of my family food wise. (I beg to differ.) You can imagine my response to all this sickness. I was probably not the most compassionate wife to my husband during this display of sickness. Because I work hard at wellness, I have no tolerance for whining, complaining and laying around if you are not doing everything you can to be well. I realized how deep I have to dig lately to be compassionate to others when they are not feeling well if they are not being proactive, eating wisely and moving their bodies. Just being honest. The same goes for myself if I choose to indulge from time to time. If I feel like junk as a result, I have no one to blame but myself and try not to mope around and complain about it.

I would in my defense like to say that I threw the book at my husband in my efforts to get him well. I ramped up his vitamin C, D and zinc. I gave him fresh, live food,

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I made soups with vegetables and homemade stock, I had humidifiers and simmering pots of essential oils going, I tried to get him to neti pot his nose and clean it out, I suggested he get some fresh air, sunshine on his skin and encouraged him to walk barefoot on the earth. I knew the barefoot part wouldn’t happen, but the walk did. :) I made him teas and homemade cough syrups that had everything from apple cider vinegar to thyme and honey, I kept the four kids occupied so he could rest for hours at a time, I encouraged him to get his spine adjusted (noticeable improvement in health after), and I showed him love and support (I promise, I did).

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After three weeks his cough finally subsided just in time for Christmas. He and I are getting to sleep through the night again and I am praising Jesus!

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I share all of this so you may be mindful of what is in those colorful bottles of cough syrup, sleep aids, etc. We have to be our own health advocates because unfortunately, the shelves are lined with bottles of toxic concoctions and well meaning doctors are not always recommending what is truly in our best interest.

Praying this finds you feeling well and staying well in the new year!

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.

Stay Free, People!

I get a daily devotional in my e-mail inbox from Max Lucado. Here was today’s:

“In 1965 Howard Rutledge parachuted into North Vietnam and spent the next several years in a prison in Hanoi, locked in a filthy cell breathing stale, rotten air trying to keep his sanity. Few of us will ever face the conditions of a POW camp.

Yet, to one degree or another, we all spend time behind bars. After half-a-century of marriage, my friend’s wife began to lose her memory.  A young mother called, just diagnosed with Lupus. Why would God permit such imprisonment?  To what purpose?  Jeremiah 30:24 promises, “The Lord will not turn back until He has executed and accomplished the intents of His mind.”

This season in which you find yourself may puzzle you, but it doesn’t bewilder God.  He will use it for His purpose. Please be reminded…You will get through this!”

I read this and thought, “I don’t want to be behind bars!” This sense of self imprisonment could apply to anyone at any time in their life. What stood out to me was lupus (i.e. autoimmune disease), behind bars, and God. Let us not put ourselves behind bars at any point in time because of our physical battles. Lord, please….

I can’t help but feel sometimes that we are hand selected in a good way to carry certain burdens. It has certainly impacted every little corner of my life to be faced with the loss of my health. It is important to me to try to keep it in perspective. I can’t personally do that without God.

I pray this finds everyone free today!