Anchors and Ships Lost at Sea

Life can change overnight and we’re suddenly thrust into a new, more challenging way of living; added anchors of various weights, each remarkable in their capabilities, forever leave us with a changed footprint.  The lighter anchors pull us just below the churning surface where we can at least bob for air. The heavier burdens, or anchors can take us to the cavernous desolation of Marianas Trench, where sunlight cannot penetrate, yet life is faintly sustained, if you are a microorganism.

In the moments of day to day, minute by minute breathing, any  form of hope cast forth is limitless, almost weightless, IF we do not allow ourselves to fall too deeply and succumb to the surrounding water pressure of present existence, which increases with depth.

Just as there is movement beneath the shadowy currents, so also are our mindsets and self-perceptions. If we are not careful or fail to lasso destructive thought patterns, those vast trenches become murky, watery graves in which our soul, psyche and abundance of purpose lose their shining. We become buried, as ships lost at sea, where recovery is undeniably impossible if our internal tectonic plates collide into permanence.

Imagine the precarious position this propels our loved ones into; they cheer from the shore, feeling helpless as we drift in and out, as we dive deeper into hypnotic solitude, possibly to the point of no return.

Imagine the levels of frustration our loved ones endure because they love us, yet that love can become fragile if we are not willing to do our part in meeting them, at least in the middle. If we do not seek strength from our Creator, deep in these trenches, then life becomes void. Believe me, I know.

When effort replaces ambivalence, our loved ones are renewed in their fight right along side us. They once again pick up the pieces and bear the loads that we cannot carry; they make our waters placid. So too, does my God, He has carried me across those stormy waters, taking the full brunt of attacks, on my behalf. He will do the same for you.

Photo by Manuel Keusch from Pexels

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MAP: Where We’ve Been and Where We’re Going Part 3

When one considers the cost of regulating, or at the least enacting standard protocol, to better grasp a potential public health crisis, such considerations gain merit. However, such measures are met with nods towards ambivalence as the costs of prevention comes into view, not to mention mass hysteria.

Suddenly, we find ourselves realizing how one decision outweighs the other from a humanitarian viewpoint, yet financial devastation overshadows “what should be done.”

Historically, however, it seems no happy medium is acquired as two parties walk away, one the champ, one the loser, as demonstrated by colonization efforts. Narrowing this perspective to the origin of this post, I shall now lay before you my findings.

As you’ve read in previous posts, MAP (mycobacterium avium paratuberculosis) is a hearty pathogen, and contaminates global water, milk and meat supplies; this bacteria in milk is resistant to standard pasteurization processes and some have argued that it may survive the cooking process, as extreme heat or extreme cold may not inactivate. [1] [2]

Crohn’s Disease has been suggested as the human version of Johne’s disease (in ruminants – chronic, lethal inflammation of the intestine caused by MAP). Worldwide, Johne’s has been detected in some sheep, goats, pigs, buffalo, deer, beef and dairy cows, rabbits and other ruminants. Once consumed, MAP has the ability to wreak havoc within the immune systems of its host (immunocompromised humans and healthy ruminants). I am not advocating stopping consuming these – every single ruminant listed and roaming the earth, does not carry the infection; this list is not exhaustive. There are increasing numbers of global, ethical farmers with which to purchase quality products, who have low MAP detected farms and are certified as such. [3] [4] [5] [6] [7]

US farmers are taking notice of this threat to their livestock and livelihoods, yet with sparse acknowledgement from our government, this is where we need to step in and help our farmers. I interviewed a cattleman who stated that most smaller dairies are not financially equipped to make changes like big dairies, and that testing is so expensive, not many can or will test.

This cattleman stated that lots of dairies don’t keep cows around long enough to display symptoms of Johne’s (which typically takes two years); a large turn around is needed as producing a lot of milk is hard on a cow’s body. He stated that each generation wants to produce more milk to the point the cows wear themselves out, at which time they are sold for hamburger meat.

Let’s rally with and encourage our farmers to adopt safety standards; as constituents, let’s contact our local, state and national policy makers to recognize this problem, and enact legislation and funding to reduce infection. There are ways to support our farmers in this endeavor, which supports their livelihoods and our collective futures; there is strength in numbers.

#Johne #paratuberculosis #mycobacterium

1. What is MAP?
2. Reducing Human Exposure to Mycobacterium avium
3. Beware Johne’s Disease
4. MAP Positive Rabbits
5. MAP Positive Rabbits Addendum
6. MAP Positive Goats (India)
7. MAP Positive Buffalo, Goats, Sheep

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MAP: Where We’ve Been & Where We’re Going Part 1

My research into MAP (mycobacterium avium paratuberculosis) has proven worthy to get a grasp of what this bacterium entails, coupled with the enormity of what this could mean for Ulcerative Colitis/Crohn’s Disease, MS, Hashimoto’s,T1D patients and others. Let me reiterate, however, that MAP may be one cause for Crohn’s and/or Ulcerative Colitis development; microbiologists, researchers, and physicians are painstakingly working to further prove this.

In a 2003 published article by NCBI (National Center for Biotechnology Information), the notion of a correlation between MAP, Johne’s Disease and Crohn’s was presented. 3 years prior, the USDA requested that the Board on Agriculture and Natural Resources of the National Academies form a committee to research their concerns. The council extensively viewed evidence, domestically and globally, and made “recommendations for a national control program,” going so far as to recommend that further emphasis be put into funding, research, and awareness. [1]

The council recommended specific and controlled testing of individuals with Crohn’s Disease to determine if they were MAP positive, and drew the following two conclusions: “The possibility that Map infection could be a cause of some cases of Crohn’s disease in humans, combined with concern that Map is becoming widespread in the environment and the food chain, could transform JD into a serious public health problem.” [1]

“Several approaches have been taken to begin addressing growing concern over JD. The National Johne’s Disease Working Group (NJWG) of the United States Animal Health Association has implemented an educational program to increase awareness among livestock producers, developed a voluntary herd status program to encourage producers to rear JD-free herds, and has developed minimum standards for state JD control programs. All of these efforts are yielding positive results, but the lack of a nationally coordinated control effort has limited progress and the sense of urgency continues to grow.” [1]

The National Research Council named 9 specific, evidenced conclusions, and outlined recommendations (25 to be exact), of methods, protocol and prevention, based on their findings and what other countries do who face the same problems. These easy to understand, and follow, recommendations included input from NJWG, who educate farmers and veterinarians on how to handle this MAP, Johne’s threat. [1]

These conclusions were geared towards producers, state and federal authorities. As for MAP causing Crohn’s Disease, the committee had these to say: “After evaluating all of the available evidence for and against a causal role for Map in Crohn’s disease, the committee was of the unanimous opinion that the evidence was insufficient either to establish or to refute a causal connection.” [1]

“If a causal relationship is established between human Map infection and even a subset of Crohn’s disease cases, the above research recommendations will be essential for implementation of new control programs aimed at protecting public health by minimizing exposure to Map. Additional research would then be needed to develop methods for routine screening of dairy products, meat, and meat products for Map,” according to the committee. [1]
Out of the list of 25 recommendations, concluded by the Board on Agriculture and Natural Resources of the National Academies and the NJWG, consider this one:

RECOMMENDATION 21. The National Institutes of Health or a similar body should convene a panel with experts in gastroenterology, Crohn’s disease, infectious disease, mycobacteriology, biostatistics, epidemiology, etc., to define the precise study designs and to rank order the various studies to be done.” [1]

Based on their own merit – global experts representing all of these fields, led by Dr. J. Todd Kuenster, primary author and conference organizer, accomplished this recommendation, on their own. In the 2017 MAP conference held at Temple University in Philadelphia, attendees and consensus contributors (including my GI, Dr. Ira Shafran), agreed on this: “In a blind study, three independent laboratories using” (Prof. UCF) “Naser’s method have confirmed that viable MAP is found at a higher prevalence in CD patients than in controls”, “…MAP present in dairy products and meat causes disease in some humans and thus poses a public health threat…” [2] [3] You can’t get simpler than that.

1. National Research Council (US) Committee on Diagnosis and Control of Johne’s Disease. Diagnosis and Control of Johne’s Disease. Washington (DC): National Academies Press (US); 2003. Executive Summary. Executive Summary Diagnosis and Control of Johne’s Disease

2. Human Para Foundation

3. 2017 MAP Conference

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Beyond the Waterfall

Before Colitis/Crohn’s Disease, I planned to earn my Master’s at UNCW, in a field of research relating to ocean conservation; my late Uncle Ed and I planned to delve into his discovery of producing fuel from algae, pooch and I had a place to live, employment opportunities and a path. Little did I realize that years before, I had been infected with mycobacterium avium subsp. Paratuberculosis (MAP), which was probably the cause of my out of the blue symptoms (MAP incubates for years), and subsequent diagnosis of Crohn’s Disease and Colitis.

No one could foretell that it would take 6 years and 7 GI’s, post diagnosis, before I learned about MAP (which has caused me great anguish, realizing I didn’t have to suffer so much and almost die two times in the process). How many other patients and their loved ones could have been helped or saved by this information? After diagnosis and before I learned of MAP, as the months turned into years and I watched my mind and body go from over the top to barely functioning, I knew my UNCW and biofuel plans were out of the window, so I settled for doing whatever I could to pay my bills, support myself and pooch.

Those ideas, that notion of “settling” formed the solitary, unmovable rocks and boulders of my existence; they became my only resting place as deemed by conventional medical society. Being told you can no longer live or eat as previous, and that your options in life are suddenly limited is a humbling experience, and not something anyone wants to hear.

Having limited options for care is even more humbling. I was stuck and losing hope; I no longer noticed the flow of life around me, of how dammed waters well up with such force then break without notice; shallow riverbeds are overtaken in release of gravitational force in a glorious, sparkling, foaming cascade over a cliff, briefly settling into a misty basin, before being pushed further into great unknowns. No wonder people harness the power of water, it is indeed alive, an effervescent production of negative ion’s, clashing H20 atoms, water molecules and pure energy. It’s curious how, when we are out of energy, we can surround ourselves in God’s creation and notice His ever-present energy, small moments keep us moving, if only minutely.

Is it not ironic, how, in our own lives we tend to face obstacles and deal with life much the same way? Our present circumstances and perceptions of the future and the after life can become mottled if we don’t keep them in check.

As I have learned, life’s events are either covertly building under the surface like a tsunami before landfall, or are subdued and meek like a meandering stream. Now let’s focus on what’s before me, the world I see through the waterfall and beyond.

Before anti-MAP therapy – when I could not gain weight!

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To be given hope renders a fountain. To cautiously believe that my reset button can be pressed evokes a cascade of reactions; from disbelief to what do I do now? Where do I begin? What do I want to do with the rest of my life? I suddenly have choices and may no longer be relegated to a few specific things that won’t cause stress or aggravate a volatile disease process (if such exists).

These hints of what could be, while still settling in, are much like viewing the world from behind the curtain of a waterfall – at the back are familiar, slippery stonewalls, where comfort in a reclusive form has been my norm for years, simply due to inexhaustible symptoms plus being told this is the best it will be for you – your life will never be the same. Don’t exert yourself, avoid stress (like that’s possible), those repeated words and endless exhaustion eroded all my plans and dreams of living life as the gush of the unknown washed over and engulfed me.

However, I am meant to share my story – more importantly, to educate those affected by Ulcerative Colitis/Crohn’s Disease and give you a dose of reality. You too can find answers – you do not have to settle anymore!

Although I am not out of the woods with my treatment or symptoms, I will say that the mere act of penning my journey has been cathartic; a hypnotic solitude in knowing I can reach others with positive news and champion our cause since, for the first time in history, patients have a voice.

Recovering from 2012-13 flare – prednisone face!

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Astoundingly Simple 1

I am under the care of GI#7, aka Magnificent 7 or M7; to convey that I have the echoing’s of life without Colitis/Crohn’s Disease makes me wish to stand on a lushly green mountain top and shout to the world of my miracle! While M7 has not promised such deliverance, mounting evidence proves it is possible for long-term remission minus medications in some cases. Such a plethora of info to share at this latest junction! However, I must first complete my story thus.

When one ceases to try and control their life/health, that becomes the moment of acceptance which imbues a labyrinth of recovery. Sometimes, when we least expect, God presses our reset button. He is a good, good Father. Cautious optimism is allowed to seep in, a miniscule amount at a time. Life without Ulcerative Colitis/Crohn’s Disease, chronic or life threatening illnesses, or at least a life minus horrible medications is something we’ve been told was not possible. Lest we believe?

It’s curious how teachers come into our lives; this is twofold of my journey towards recovery. My friend Boyd and I were discussing life one day; he’s one of the few I chose to reveal Colitis/Crohn’s Disease. He’s given witty guidance and has been there during my treks from GI #’s 5 – present. During one such conversation, he challenged me to not accept the establishment answers and prognosis about these autoimmune diseases, bacterial infections, but to dig deeper and find alternatives to my care, other schools of thought if you will.

You see, while my symptoms were somewhat controlled, I was still sick and I displayed long-term textbook reactions to the biologics. I was desperate and I needed help. During this trek, I was educated to the fact that Ulcerative Colitis/Crohn’s Disease can be caused by fungi and/or bacteria, which may thrive in a genetically immune deficient host – not solely a result of the much-touted over active immune system theory. Sounds astoundingly simple, right?

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My Journey Continues

Penning anything about myself is an unusual endeavor as I am extremely private; revealing myself to the world is something I feel God is leading me to do, in hopes to not only help others, but magnify Himself. Without Him, we are nothing. Without Him, I would not be writing.

Being candid about my struggles has to be viewed from the outside looking in; instead of seeing my experiences through a personal magnascope, I must swivel and realize that this is like a detergent for others facing similar difficulties. The abhorrence of appearing like a victim, or having a woe is me mentality if I share too much, is replaced with the cleansing realization that I can identify with many others; my struggle may or may not match yours, however we are all sondering in one direction or another.

As I forge onward with these musings intertwined with my story, I feel it only best to give you a preview into what my life is like at this very moment. The most imposing issues now are fatigue and insomnia – that’s it! I am maintaining weight, cognitive functioning is replacing brain fog and short-term memory loss; cramps are a bit less, my olfactory system has the cogs turning once again and the drug induced lupus symptoms are beginning to leave, ever so slowly. Precious pooch has a precious new bestie named Kiwi and the therapy these two dogs present is a comforting balm. Progress is being made!

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Updated Version

Ulcerative Colitis/Crohn’s Disease are two of many silent diseases. Unless one is in mid flare, there can be little visible signs of illness. Subtleties such as exhaustion can be over ruled briefly with caffeine, drudging to shop can be temporarily masked by pain killers, and the brave face that a lot of us wear, who keep our problems to ourselves, works wonders for charades to the outside world. The mask makes it difficult for others to understand what we face daily, as we “look fine.” However, the looking glass bears great distortion, both from the outside looking in, more importantly, from the inside looking out.

Understanding then accepting the levels of defiance, denial and grief is an acquired resolve to beginning to love ones self again; small steps to make our lives a bit more bearable are needed for self-affirmation. Our bodies respond to positive queues just as they do to negative self-loathing. We are living creatures – resilient, yet needy to the love, attention and care that we so often delve to everyone but ourselves. When we introspect, we locate deficits within our psyche, those dried out channels and pathways, which lead in and out of ourselves, which must be nourished daily. If we continue drying ourselves internally, it does not take long for us to display those embittered responses to those around us and unless we are careful, we shut ourselves away from the very people who care the most for us.

Speaking for myself, I began ignoring phone calls, texts, emails and most attempts from those who knew a bit of my struggles. Unless these concerned friends or family are determined and can see past our façade and ignorance of ignoring, they will drop off the map. Who can blame them? You must be a trooper to endure chronic illness; you must be a trooper to be patient and love someone with chronic illness.

The older I am blessed to become, the more I realize how everyone has a struggle, some greater than others, but nonetheless we all deal with Goliaths. How we choose to respond to circumstances determines how well we live life; even the most optimistic people have deep chasms of chaos. The optimists are to be admired because they choose to remain soft and vulnerable, rather than fully retreating into themselves, morphing into an emotionless grey wall, the only penetration being, not love, but dynamite. I know, my gray fortress was thick and surrounded by two moats, filled with prehistoric swimming creatures ready to strike prey. Well, perhaps not to that extent, but close enough. Only those few, who persisted with trial and error, patience and love, tamed those beasts and carved their way through my walls.

I’ll never understand all of my circumstances and I don’t think God intends for His children to always know the reasons why He sends us through storms, yet my faith in Him gives me reason to hope, for He has never failed me. The best way to explain where I currently am in life is that I’m striving to become a better version of my pre-illness days and by the Grace of God, an updated version of my old self!

This is my birthday cake my dear friend Pam baked and decorated for me, gluten free and delicious!

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Sunset Bleu

Before I continue, I might interject that these last 2 weeks my physical difficulties have intensified. Joint pain inhibits walking/sleeping, muscle aches, overall stiffness and flees to the loo have me weaving a deepening trail of pain meds and heating pads; it’s early August 2017, hardly the time to be cold and hurting. Such is a day in the life of a Colitis/Crohn’s Disease patient. However, this time is inextricably more tolerable, more load bearing as I am having, err, welcoming the throes of Herx reaction, in other words I’m living through die off of MAP (mycobacterium avium subsp. paratuberculosis).

My teeth and tongue are a matching shade of endearing navy blue and daily I taste metallic. My hair is thinning and I have visions that I may soon resemble a blueberry lollipop. My complexion is orange and my hair goes between flattering hues of orange and greenish blue. If you squint, I look like the sea at sunset, especially if I smile; perhaps these reactions are a nod to herald incoming and continuous seasons of Belle Époque as opposed to past seasons of seemingly dismal and infinite gray expressionism? That’s my take on these reactions.

These reactions are side effects of the antibiotic regimen my new GI – #7 has prescribed. This I can handle, because I’ve had 6 years of the flip side with no end in sight; the end is in sight now since I believe MAP is the cause of my Colitis and Crohn’s. Trials, studies and scientific data all back this claim and I do not mention this lightly. My new GI rocks the rafters and so does my new treatment, which is not a band-aid as previously experienced for 6 years, but rather a possible cure!

As presented in earlier posts, MAP transmission, (infected ruminants, dairy, and tainted water are the top sources), does not affect everyone, only those with a genetic predisposition towards illness or those with microbiome imbalances. There is more to come on that subject! Check out my two articles:

Is Your Water Safe?
Two Uncommon Sources of Mycobacteria You Should Know About

The Lord laid this quote on my heart: For everyday you wake healthy, for every day you wake feeling normal, consider yourself blessed.

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As I forage the mirage of memories during my 2015 flare, it becomes hard to decide where to continue. I fear my audience grows weary reading about the day-to-day struggles I faced, navigating through physical and emotional pain, mental turmoil and ever-hovering lack of energy. Let us power through!

Realizing my friends were out and about working, meeting for dinner, planning weddings or baby showers left me feeling in a quandary of wondering as my mind wandered. Why had my independent, driven to succeed life style been reduced to zero? How had my nest egg turned to dust and why was I forced to close my bank account due to lack of income? Why was I unable to get support from the country that I’ve paid taxes into since a teen?

Unbeknownst to me I was grieving, not only for the life I lived, but for my life unlived. That year I missed the wedding of my two dear friends, Fred and Alisa, before that I missed the wedding of my fun loving cousin, Kimberly, plus numerous special events and outings.

All of the accomplishments I made heretofore meant little as I struggled to enjoy a simple pleasurable moment, such as watching cream settle into cloud like swirls in hot tea, sitting in the sunshine or watching a colorful butterfly flit around joyously within it’s delicate circle of life. Eventually, you reach a point where you recognize the value of small moments and choose to relish in those, reconciling the past for what it is, the unreachable past.

My inspiring friend, Ray, helped me realize the roots of my angst – grief. After nursing his bride for ten years, Ray had just admitted his lovely wife to a care facility and was dealing with legitimate, well founded grief. She had reached the point of needing round the clock care; probably most painful was the fact that she no longer recognized her loving and devoted Ray. Gone were their golden years, of not enjoying what they each had worked so hard to share together for over 62 years. I cannot imagine what that is like nor how Ray deals, yet he does so with cheerfulness and dignity. Ray is a saint in his endeavors to care for his wife and help others in their struggles, although he would say otherwise.

Each of us grieves, sometimes for different reasons; had Ray not chosen to share his experience with me, I may have never recognized or validated the stage of life I was in. There is great chance that I would’ve never recognized my own grieving process nor given myself permission to name it for what it was, precluding another clogged channel to work through later in life. Thank you, Ray, not only for your continual words of affirmation and gentle encouragement, but for your friendship. You do make a difference as you teach that we shine brighter through support and you do so with cheerfulness and dignity.

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