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Major Life Change

by Burke Johnson
(Calgary,Alberta,Canada)

Hey there. I am a 27 year old male living with AS. I developed symptoms after struggling with Crohn's disease from 2002 until present.

I was diagnosed with AS in 2009, after becoming wheelchair bound from chronic lower back pain. I had a very good career in the concrete business as a foreman, making a nice salary and a good pension. The quick onset of the AS caused me to lose my job and consequently my house as well.

Since then I have been struggling just to make ends meet, and if it wasn't for my awesome wife I would probably be dead. I went through heavy doses of prednisone initially, and suffered from several very bad side effects.

I highly recommend that nobody take that drug unless its a life vs death situation. I was then prescribed Celebrex for the AS.

The problem with Celebrex is that it caused immediate flare ups and bleeding with my Crohn's. Also, the pain relief was no better than taking over the counter Advil or Tylenol.

I was prescribed Oxycontin as well for my pain, and obviously that created a lot problems for me.

Long story short, I got myself off that garbage and started exploring more alternative pain management. I live in Albert, Canada, where there are no doctors that advocate cannabis as having legitimate medical uses.

I traveled to British Columbia, and met with a Dr.Gooch (real name, yes) who assisted me in getting my medical marijuana card. Cannabis has greatly improved my pain and appetite, but it's a bandaid and not a solution.

Currently I am struggling with pain everyday and trying diet as an alternative. AS has literally ruined my life and took everything I love from me except my wife.

I have dark thoughts some days, especially the really painful days where I honestly would just like to die. I used to work out everyday, run, bike, box and skateboard.

I am the epitome of an active guy, I don't even have cable still to this day.

The Crohn's was manageable because it was mostly just pain, but the AS actually cripples me to where I can't even push through.

I wish someone could end my suffering.

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Dec 18, 2012
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Continued
by: Grace Cross

• Just a note, if you need to take Iron supplements, keep in mind that Iron is antagonistic with fat-soluble vitamins (A, D, E). So take your fat-solubles in the morning and your Iron at night. And because Iron has a constipating effect, if needful, you can counter that effect with Lecithin, which is a natural laxative. One of each should be all you need. This is one reason why I take my nutrients separately and why I recommend vitamin supplements that do not contain Iron.

• Reinoculate your digestive track with good bacteria, specifically Lactobacillus acidophilus and L. bulgaricus (with fructose oligosaccharides). One source of L.b. is Jerusalem artichokes.

• Repair your digestive track by taking Glutamine, DHEA, EFAs (fish oil and cold water fish such as halibut, tuna, mackerel, and sardines), vitamin B5 (Pantothenic Acid) and vitamin C (5 grams minimum daily, in divided doses) and Probiotics. Consider taking Butyrate enemas.

• Make milkshakes with whey protein because it contains PREbiotics. There are many other sources of Prebiotics. I will list them on my Crohn’s page(s).

• While I did not see any specific reference to this, I would also recommend you avoid caffeine, such as coffee, tea, and sodas. Caffeine has a direct impact on digestive processes and could potentially exacerbate your Crohn’s. If you must have hot drinks, try uncaffeinated herbal teas, coffee, cocoa, and cider.

• Sleep is necessary in order to heal. You can help yourself stay asleep with Melatonin. Start with a very low dosage, taken two hours before bedtime. In my experience, Melatonin will not help you fall asleep; it will only help you stay asleep.

• If you have mercury amalgam fillings in your teeth, now is the time to take steps to have them removed. Read the book “It’s All in Your Head” written by Dr. Hal Huggins and look for a dentist practicing mercury-free dentistry. Dr. Huggins also has a website, hugginsappliedhealing.com. If not removed in the correct manner, they can lead to increased medical issues. You should expect a period of increased illness after removal, gradually dissipating. My husband experienced this with his Psoriasis when the last of his contaminated teeth were pulled and I experienced increased eye problems (Papillo-edema) after a contaminated tooth broke and it was several days before I could get it pulled.

• If you have mercury amalgam fillings, whether you can get them removed or not, try Kombucha. Now available in commercial products at health food stores, Kombucha is a unique product capable of removing toxins, including mercury, for body tissues. I used it many times in the past. Yes, I will be creating a page or more on this topic in the near future.


Dec 18, 2012
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Continued
by: Grace Cross

• Remove inflammatory consumables from your diet. These include, but are not limited to, dairy, eggs, nuts, fruit, tomatoes, corn, wheat, gluten, and red meats, refined carbohydrates, and fats and trans-fats, with the exception of Essential Fatty Acids. Once your health has improved to the point you can endure relapses, you can use Elimination Diets to determine exactly what foods worsen your condition(s).

• Arachidonic acid is a chemical shortcut to the production of bad Eicosanoids, which includes inflammation. Eicosanoids (pronounced eye-KAH-sah-noyds) are micro-hormones produced in the cells for surrounding cells and appear in the body in pairs. One pair of Eicosanoids controls bleeding: too much of one and you may suffer a stroke, too much of the other and you could bleed to death. The Zone diet is designed to balance Eicosanoids and Dr. Sears’ books have much to say on Arachidonic acid and how to avoid/limit it. If you’d like to start inexpensively, check out his “Enter the Zone” book through the library, or pick up a copy of his paperback “A Week in the Zone”.

• A book by Dr. John O. A. Pagano entitled “Healing Psoriasis Naturally” demonstrates the effectiveness of enemas and an Acid-Alkaline Balanced Diet in turning around disease. So I would also recommend the book entitled “The Acid-Alkaline Balance Diet” written by Felicia Drury Kliment. Life Extension Foundation mentions Butyrate (aka Butyric Acid) enemas. BA was found to be impaired in cases of ulcerative colitis, which is similar to Crohn’s. This is because it is produced by healthy bacteria, which are significantly reducted in these conditions.

• Replace nutrients by way of liquid vitamin and mineral supplements, and protein milkshakes using Whey protein. I get my Whey protein at Trader Joe’s (California), but it is also available at many stores, including natural food stores and with body-building products. I get my liquid mineral supplement through Youngevity, a product called Plant Derived Minerals. They also carry a selection of liquid vitamin supplements, although I take mine in separated products, to more precisely manage dosages. I like Youngevity especially because, not only is it a superior product, and I found the founder’s book “Dead Doctors Don’t Lie” to be a real eye-opener on mineral deficiency repercussions, Youngevity operates on a tiered membership program. A one-time $10USD payment gets you a lifetime membership, and your purchases, and those of your downline, can result in discounts and income. If you decide to join, please name me as your referral, my Distributer ID# is 100512346.

Dec 18, 2012
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Remove, Reinoculate, Repair
by: Grace Cross

Crohn’s is an auto-immune condition that primarily affects the digestive trait. It leads to changes in the organs, nutritional deficiencies, extreme pain, and more.

As I said, I’ve not had Crohn’s myself. But a former co-worker of mine did. She was a tiny little thing, a petite Asian, who could not seem to keep still at work or sit for long, and apparently got little sleep at night. She was married and wanted children but her condition was too debilitating, especially as I think she also had Endometriosis. Learning that her husband had Gout and had imposed his own diet on her, I made a few suggestions. Years later, after transferring to another department, I learned that her health had improved to the point that she had had a baby.

Her husband’s Gout was largely brought on by a high-protein diet and inadequate water intake. He apparently drank plenty of other fluids but wouldn’t touch water. I suggested he increase his water intake, decrease his protein intake, and that she switch back to the Asian diet of her youth. I don’t know if his condition improved, I’ve had no input, but obviously hers did.

As a result of your submission, I’m going to put together a page or more on Crohn’s in the near future. But, to be brief, sources suggest to me the following recommendations:

Dec 18, 2012
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Thoughts on Cannabis
by: Grace Cross

I’ve not tried medical marijuana personally, but have a former co-worker and friend with multiple sclerosis who is growing and using it. (She also has allergies and asthma.) Her husband is also using it for his digestive pain problems. So I did some research.

While this is not a personal recommendation, per se, if you are going to take it, the best recommendation I’ve seen is actually NOT to smoke it like a cigarette, but to inhale the fumes, as with a cold air steamer for allergies and asthmatics. This supposedly gives you its benefits without its drawbacks. There are many articles online on how to do this, so I won’t go into details myself. Hope this helps.

Dec 18, 2012
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Suicide is NOT an Option
by: Grace Cross

Your religious beliefs are your own and it is not my place to change or challenge them. While I, myself, am a follower of Jesus Christ, I do not identify with the current Christian community at large. My reasons are private and personal.

While I will not attempt to dissuade you from ending your life prematurely, as I, too, have had many episodes of extreme depression and thoughts of suicide, I have one question for you to consider…

How would you like to repeat this lifetime? Not the good times, but the AS, the Crohn’s, the depression and despair. Repeatedly.

Reincarnation and karma are the reality of life and death. Even Catholics believe in reincarnation, to a point. But reincarnation is the only possibility, when one looks at the overall unfairness and disparities of life between the rich and the poor, the healthy and the sick. If we had only one life to live, then there would be no real incentive to learn spiritual lessons such as forgiveness, compassion, humility, being a Good Samaritan, etc.

On my personal journey of discovery I first read “Life after Life”, written by Raymond Moody, a book that explores the near-death experience. I followed this up with “Life before Life”, written by Helen Wambach, a book that explores past-life regressions. Then I found “Journey of Souls”, written by Michael Newton, Ph.D. Dr. Newton discovered the bridge between death and rebirth while applying past life regression therapy on his patients with unexplainable pain.

Karma is the law of balances. When we suffer, it is either to experience suffering we have imposed upon others in a past life or as a lesson to someone in our current life. It is a spiritual lesson. One episode in Dr. Newton’s book tells of a patient who found, upon regression, that in a former life she had - deliberately - thrown herself from a horse-drawn carriage as a young girl and committed herself to a life as an invalid, specifically to develop herself as a scholar and as a karmic lesson for her parents.

It is not necessary for you to believe in karma or reincarnation. Just ask yourself, in the event that karma and reincarnation are reality and not fiction, do you want to go through this lifetime – again? Because if you terminate your life prematurely, without completing the spiritual lessons you were born to learn, you can bet your bottom dollar you are going to be expected to do it again.

It is those thoughts that got me past my own depressions and thoughts of suicide. As bad as life has been to me at times, if I would not wish those things on my worst enemy, I sure as hell would not want to endure them again. So however unhappy and painful my life becomes, He’s going to have to take me when my time comes, I’m not going to give up a moment too soon.

Dec 18, 2012
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Change Up Your Bed
by: Grace Cross

While I do not have A.S. nor Crohn’s, I did experience an episode of horrific, debilitating back pain when my son was young and I was a single mother. It seemed to appear along with a rash on my back. While the doctors I saw were unable to diagnose it, I may have had something similar to Shingles. The pain was so intense the medical staff allowed me to wait out the tests in a firm rubber diagnostic chair, and one of their staff gave me a lift home, as I had arrived by public transit.

While I treated the rash with an OTC product, I treated the back pain by sleeping those affected days on my son’s bed. He had a twin innerspring mattress on top of box springs. The extreme firmness of his bed, and not moving once I lay down with extreme care, gave me sufficient relief to actually sleep. This experience tells me that the current medical recommendation for AS of a very firm mattress is probably valid and worth consideration.

Years later, married again, my Fibromyalgia progressed and I developed Plantar Fasciitis, a condition involving fluid retention in the soles of the feet, which leads to excruciating foot pain. I changed my innerspring mattress for a Select Comfort airbed and have been pain free from this condition now for more than a decade.

So I recommend a king-size Select Comfort Sleep Number bed, set at 100%. The airbed will alleviate the additional pain of pressure points that occurs with innerspring mattresses while the maximum setting should provide you with the firmness you need to endure the AS. Additionally, queen and king size mattresses are dual chambered, enabling both partners to adjust their side of the bed independently of the other.

The king size will reduce elbow wars, which could intensify your pain. My husband and I are both obese, and find our queen size airbed has led to frequent switching of sides the past two years, as a result of our sizes, my broken right humerus last year, and his surgery on his left shoulder this past spring (2012).

Dec 18, 2012
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Thank you, Burke, for sharing your story with my readers.
by: Grace Cross

I am happy to hear that your life partner is still standing by your side as you work your way through and past these challenges. I am also happy to say that I believe I can offer some relevant material to help alleviate your symptoms and, hopefully, put your feet on the path to improved health and wellness.

Dec 18, 2012
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My Apologies
by: Grace Cross

I am sorry, Burke, that it has taken me so long to respond to your submission. I only just saw your submission on Dec 8th, 2012, while rebuilding my pages in Sitesell’s new Block Builder 2 software platform. Your dilemma made it hard for me to sleep and I got up about 3 a.m. the next morning (Sunday) in order to give it my immediate and undivided attention. I sincerely hope this proves helpful to you and please feel free to respond, from time to time, on your progress.

Nov 05, 2013
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I Understand
by: Amy

Burke,

Hi! I was just searching Online when I came across this website and noticed your posting right away, because I also have Crohn's and Ankylosing Spondylitis. My Crohn's is much more manageable than the AS, and there are days when I feel the same way that you described. I just wanted to let you know there was someone out there who knows what you are going through (actually I have been learning that there are a number of us), and I thought I would share some of the things I have tried that have helped me manage the AS and Crohns.

I was diagnosed with the Crohns first, after a few hospital admissions. I discovered that gluten and NSAID's were both big triggers for me. So I stopped taking both, and my Crohns has been much, much better. But then the back pain and SI pain, which I have had for many years, became so much more intense that I couldn't even walk. I was then diagnosed with AS. This was just last year, although I have had symptoms for probably 10 years. I'm 43 years old now.

Anyway, I found Online information from Dr. Alan Ebringer, the doctor and professor in London who has studied and worked with AS for a couple of decades. Check out www.KickAS.org . Anyway, he discovered that AS is caused by a bacteria (Klebsella) that normally lives in the gut. The discovery was made from his research that almost everyone with AS also has ulcers in their colon. A large percentage of As patients are already diagnosed with Crohn's or UC, but some have the ulcers and haven't been diagnosed yet.

Anyway, since people with ulcerative colitis OR Crohns have ulcers in their gut, this allows the Klebsella bacteria to enter the blood stream and provoke an auto immune reaction. The bacteria lives on starches that you consume. So whenever you have a high starch food (such as pasta, bread, cakes, anything with flour really, or potatoes), the bacteria becomes active and within 3 hours of the starchy food intake, pain will result. Therefore, he came up with a low starch diet for all the AS patients that he treats. The popularity of the diet is spreading as more and more AS patients around the world become aware of it.

I'm still learning how to eat on the diet, but I can say that within 3 days of trying it, I felt a big reduction in pain, from a 10 to a 3. I can now walk and get around, which is something that none of us really appreciate until we can't do it.




Nov 05, 2013
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I Understand
by: Amy

Of course, everyone is different, so I'm not saying this is a magic cure all for everyone with AS. I'm just sharing my story, and that it helped me, as well as countless others who have left their testimonies on the KickAs.org website mentioned earlier. The good thing is that if the diet is going to work for you and help, you should know within only 1 week. So you don't have to invest a lot of time and effort to find out. You do have to be pretty strict during that week, though. As you get better, you can be a little less strict. The diet actually is a lot healthier way to eat. My husband has decided to follow it too, even though he doesn't have AS, just because it's such a healthier way to eat when you cut out processed foods and starchy stuff. The great side benefit is that it also has helped my Crohn's get even better.

Besides the diet, I also focus on positive thinking, appreciating all I do have in my life to be thankful for, and I try to surround myself with other positive people.

It also helped me to focus on trying to develop and strengthen my faith. Most experts agree that belief in a higher power (they don't care which one) is essential for facing any trials in life. It is as if we were made hard wired with a spiritual need, and that's one thing that sets us apart from the animals. Spirituality gives us hope that this life is NOT all there is, and assuring myself of this fact has not only helped me to have more courage, but has also given me hope, comfort, and the ability to endure with a smile, knowing that something better lies ahead. During especially difficult times, I can turn to prayer and petition my Father for strength.

Personally, I am Christian, although my Christian beliefs are different than most main stream Christians. I have taken time to personally study in depth the Bible, and I find that many Christian denominations have deviated from what is in the Bible. After analyzing the Bible- it's accuracy (historically and geographically), archeological evidence, the harmony of the various writers although they were from all different backgrounds and spread out over hundreds of years, the recorded prophecies about rulers and nations coming true although written hundreds of years in advance, the benefit of the Bible's counsel to people of all backgrounds, races, nationalities, the fact that the counsel hasn't expired even after many centuries, the fact that no other book has had such intense efforts to destroy it over the centuries, and the fact that it is still today the most popular book in history written in almost every language on earth. All of those facts have convinced me that the Bible is of an origin BEYOND humans. It is inspired by God himself ("inspired" means "God-breathed"). Every person owes it to themselves to read, study and learn what amazing insight, hope, instruction and comfort is in this unique Book. It answers all of the big questions in life.

Nov 05, 2013
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I understand
by: Amy

One of my questions was "why would a God of love allow suffering?" In my personal study, I came to realize that the Bible explains why God has allowed suffering. Knowing this is important to someone who is suffering, like you and me. I learned that suffering was never part of God's original purpose. In the beginning, God created our first parents without suffering and put them in a beautiful paradise with every need fulfilled. He told them to fill the earth and enjoy it. This was his purpose. There was only one tree that he held back from them, and he warned them not to touch it or else death would result. Satan was the one who intervened and convinced Adam and Eve to rebel and turn against God and disobey. In effect, Satan told them that God has no right to hold anything back, nor does he have the right to rule over you. He convinced Eve that she could be her own god, and decide for herself what was right. He proposed that humans would be better off without God, and don't need Him.

Of course, God could have just destroyed Satan, and started over with a new Adam and Eve. But that would not have answered the challenge, and millions of angels were listening to the scene unfold. They heard Satan's challenge. Remember, Satan use to be an angel before he turned rebellious, and later in Revelation is says that he drags with him 1/3 of the angels. So Satan has convinced other angels to rebel and join him (they are called demons). If God just quickly eliminated Satan, all the angels of heaven could have been left with doubts, and the issue could just keep coming up again and again. So instead, God decided to let Satan attempt to prove whether his claims are true or not. He allowed humans to rule over themselves without his direct help and intervention, to see if they could create better lives without Him. Sin and death entered the world because Adam and Eve passed this on to their offspring genetically (Romans 5:12). Suffering has resulted from sin and death.

There are 4 main causes of suffering today:

1. Our own imperfection means we sometimes make wrong choices and decisions in life, and pay the price later. We have sickness and illness and eventually death because of what we inherited.

2. We have to put up with others sin and imperfection. Wicked people sometimes afflict others and innocent ones suffer at their hands. Thus we have crimes, war, domestic abuse, etc.

3. Sometimes we are just at the wrong place at the wrong time, without God's direct rulership over us and protection, we are vulnerable and fall victim to accidents.

4. Lastly, Satan is the unseen hidden ruler of the world according to the book of John. He is behind a lot of cruelty & wickedness we see in the world today. He brings nations together in war, like chess pieces on a game. He is the unseen force behind the decay in morals, the entertainment and media that promote demonism, violence, greed and immorality.

Nov 05, 2013
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I understand
by: Amy

These are the 4 reasons WHY there is suffering. But I also wanted to know if God would ever do anything to stop the suffering?!

That is exactly what is going to happen! The "good news of the Kingdom" that Jesus spoke about repeatedly is just that....good news! God's Kingdom will bring His rulership back to the earth. A "kingdom" has a "king" and a "dom" (domain) that the king rules over. It is a government or rulership with a ruling party (Jesus) and subjects that are ruled over. In the prayer that Jesus taught everyone to pray, it says "Let your Kingdom come. Let your will be done on earth as it is in heaven". The Kingdom will bring God's will back to the earth!

What is his will? Remember the original purpose of God in the beginning of time? To live in peace in a perfect paradise with happiness and every need and desire fulfilled. No suffering, no pain, no disease, no wickedness, no death. That's exactly what God's Kingdom will bring back.

Psalms 37:10,11, 29: "Just a little while longer, and the wicked one will be no more. You will look at where they were, and they will not be there. But the meek will possess the earth, and they will find exquisite delight in the abundance of peace. The righteous will possess the earth, and they will live forever on it".

Revelation 21:4,5: "And He (God) will wipe out every tear from their (mankind's) eyes, and death will be no more. Neither will mourning, nor outcry, NOR PAIN be anymore. Those former things have passed away. And the One seated on the throne (God) said (to the Bible writer): "Look! I am making all things new!" Also He said "Write! Because these words are faithful and true!"

2 Peter 3:13 "There are a new heavens and a NEW EARTH that we are awaiting according to his promises, and in these righteousness is to dwell".

For those who have already passed away in death, the Bible speaks of some of them who will go to heaven to rule as kings and priests with Jesus over the Earth. But the majority will be resurrected (brought back to life) to live here in that "New Earth" under God's Kingdom. They will be subjects of the Kingdom. Remember, God's Kingdom is a rulership or government with rulers (from heaven) and subjects (on earth).

John 5:28,29 "Do not be amazed at this, for the hour is coming in which all those in the memorial tombs will hear his voice (Jesus) and come out, those who did good things to a resurrection of life, and those who did vile things to a resurrection of judgement."

Until the resurrection, the Bible compares death to a sleep (1 Thes. 4:13), an unconscious state of resting. "The dead know nothing at all" (Ecclesiastes 9:5). Another translation says "the dead are conscious of nothing at all". Another verse at Psalms 146:4 says "His spirit (or breath) goes out, he goes back to the ground, and on that day his thoughts perish".

Nov 05, 2013
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I understand
by: Amy

So, the dead are unconscious, sleeping, until the Resurrection, when all those who have died will be brought back to life. Remember, death entered the world because of Satan, Adam and Eve. When God's Kingdom comes and restores all conditions back the way they were BEFORE Satan intervened, then "as the last enemy, death will be brought to nothing" (1 Cor. 15:26). We see here that God views death as an enemy. It was never part of his original purpose. Death is a result of sickness and imperfection and aging, which is the body breaking down and dying in slow motion.

We are told that death is a natural part of life. Then why does every fiber of our being fight it? Why does it rip our heart apart when our loved ones die? The truth is that "God has put time indefinite in mankind's heart" (Ecclesiastes 3:11). Another translation says "God has set eternity in the hearts of man". God has put the natural desire inside of us to NOT want to die. The reason why is because we were never intended to grow old and die. Adam and Eve would have never died if they had remained faithful.


Eventually, faithful humans will once again live in the perfect conditions that God originally purposed when he made Adam and Eve. This will happen when His Kingdom comes. (according to other Scriptures, we are living in the Last Days, and are near the time for his Kingdom to come.)

As far as ending our own lives, or self murder, all murder is wrong. That option is off the table. Life is a beautiful gift, and the Originator of life would be greatly saddened if we threw it away. Besides, too much is at stake to jeopardize our good standing with God. We have a wonderful future ahead of us!

My suggestion is to spend time reading and studying the Bible. Gain strength from learning more about God and drawing closer to Him, building a relationship with the most powerful person in the universe, the one who made the heavens and the stars and the sun and the powerful atom. He can certainly sustain you and I during our difficult days. Knowing and believing that our suffering is temporary, and that wonderful promises are ahead, helps tremendously.

My last verse I will share, which is one of my favorites, is found at 2 Corinthians 4:18. It encourages us to "keep our eyes not on the things seen (our current pain and situation in life), but on the things UNSEEN (the better life ahead). For the things seen are temporary, whereas the things unseen are everlasting."

There is so much more I could share, but if you would like to learn more, I encourage you to visit the website www.jw.org, where you can read the Bible Online, but also download the book available there free called "What the Bible Really Teaches". It discusses in more detail the promises of the Bible that I have touched on here.

Peace and Love My Friend! Don't give up hope,


Amy

Jun 11, 2018
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Healing NEW
by: Anonymous

Research healing leaky gut, night shade foods, high lectin foods, magnesium oil, marshmallow root, slippery elm. These will have a huge, positive impact on helping you.

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