Updated Nov 2013
I’m often uncomfortable talking about my medical condition, simply because any problem in this area is seen as being a depressing subject. However, after many years of pain, fatigue, and non- or incorrect- diagnoses, I think my present physician has latched onto something. It all started when I was born with a hiatus hernia, which is the protrusion of a portion of the stomach into the chest cavity through a natural opening in the diaphragm (between the abdomen and the chest cavity). Even though there are several different types of hiatus hernia, mine was the (rare) diaphragmatic hernia due to a birth defect.
This condition can range from being mild to chronically severe, and as a child I experienced a lot of pain and regurgitation. It got so bad that at the age of 21 a barium meal x-ray revealed the problem. As the effects of this were fairly severe, I had an operation, which at the time was experimental. At one time, they used to by-pass the heart and lungs to get at the esophagus and in my case they elected to perform a frontal opening and removing the stomach, cutting part of it away and re-connecting it with a surgically tightened esophagus.
I regret having this operation as the effects created all sorts of additional problems. It took well over a year just to get over the operation and my ability to ingest various foods became narrower.
I’ve never been able to digest vegetables, spices and red meat. Even in my high chair as a baby, I swapped vegetables with my twin brother. With time the range of foods became more restrictive. I was also becoming more fatigued and experiencing more headaches, constipation and stomach pain. I started to wake up each morning almost clinging to the ceiling with intense pain. At times, I’ve had periods of weight loss down as low as 100 lbs.—rather severe for someone who is about 6 feet tall.
The fatigue was accompanied with low blood pressure, so low that I was hospitalized at one time. In 1987, an Endocrinologist diagnosed me with ACTH deficiency under stress (Secondary Adrenal Insufficiency). He prescribed cortisone acetate for almost a year without any monitoring. Taking this kind of medication in high doses for extended periods leads to numerous problems and some emotional instability started to occur at which point I discontinued the medication.
Cortisone tends to be a cure-all for many medical issues, but its long-term side effects can be devastating. Some of its contra-indications are as follows:
- Weight Gain – Steroids affect the metabolism and can lead to extra deposits of fat, particularly in the abdomen.
- Mood Changes – Some emotional instability can occur, especially after many months with doses higher than 30 milligrams per day.
- Elevated Blood Sugar – Cortisone maintains normal levels of glucose (sugar) in the blood. Higher levels promote elevated blood sugar or even diabetes.
- Heart Disease – Steroids may increase the risk of developing atherosclerosis (hardening of the arteries). This risk tends to be more significant if steroids are taken for more than a year in high doses.
- Infection – Long-term steroids can suppress the protective role of your immune system and increase your risk of infection.
- Gastrointestinal Effects – Steroids may increase your risk of developing ulcers or gastrointestinal bleeding, especially if taken with non-steroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen or aspirin. Stomach irritation and heartburn often increase.
- Fluid Retention and Elevated Blood Pressure – Cortisone regulates the body’s balance of water, sodium, and other electrolytes. Higher levels promote fluid retention and raise blood pressure.
- Altered Response to Physical Stress – a body tends to have a decreased ability to respond to stress, because the adrenal glands may not react as normal.
- Insomnia – Steroids may impair your ability to fall asleep, especially when they are taken in the evening.
- Bone Loss – leading to osteoporosis. Other bone damage may include “aseptic necrosis” – the death of parts of bone with the most common being the hip joint.
- Eye Problems – Steroids can sometimes cause cataracts or glaucoma or worsen these conditions if they are already present.
While some of the above side-effects can be reversed after discontinuing cortisone, others can be permanent. In my case, the last four items are present as well as low sodium.
Around 2000, tests revealed that my Hiatus Hernia had re-opened, but the scar tissue prevents any further surgery. For the stomach pain, another doctor prescribed Carafate, which actually helped to heal the esophagus, but like most medications prescribed for me I react almost immediately or after several months. I was able to take the Carafate for about 4 or 5 months before the usual onset of fatigue, headache, nausea, low blood pressure and temperature.
Several more recent tests for ACTH insufficiency indicated that my production levels were OK, even though I exhibited the classic symptoms for this condition. The problem was they only tested for primary adrenal insufficiency and not secondary insufficiency. I don’t think I can count the number of doctors who have either referred me, held their hands in the air, told me it’s all psychological or simply mis-diagnosed my condition. Even as a child I was told I made myself sick to avoid eating vegetables.
I rejected the psychological/depression assessment simply because taking certain foods or drugs led me to experience an ACTH insufficiency-like symptoms even though I was not aware I consumed certain substances, or it would have such an effect. If I was depressed, it was because of the intense pain and/or fatigue.
Doctors became extremely reluctant to prescribe any form of medication because the effect usually put me in the emergency room. In 2008, a colonoscopy went severely bad and I ended up hospitalized for about a week because the laxative did not work properly, I reacted with too much pain and a blockage occurred which shut down the area between my upper and lower intestine.
Interestingly, the doctor I’m currently seeing seems determined to find out what is going on with me and decided to try some experimental doses of Pancrease.
Initially I had a much lower incidence of fatigue, higher blood pressure, improved weight and a host of other symptoms. It turns out that this medication is used to treat pancreatic enzyme deficiency. Although it is often prescribed for people with various pancreatic disorders, it is also taken for those who have had gastrointestinal bypass surgery. Pancrease is taken to help with digestion of proteins, starches, and fats.
The pancreas is a dual-function gland, having features of both endocrine (hormone) and exocrine (digestive enzymes ) glands. Upper abdominal pain, loss of appetite, and nausea are some of the symptoms associated with pancreatic disorder.
Later, I had to stop taking Pancrease due to the FDA requirement for meeting a standard formulation for pancreatic enzyme products. A new prescription resulted in a heavily coated white tongue, and feelings of nausea, even with minimal half doses of Creon DR 6000. So, I have to make do with large doses of papaya and pineapple fruit, prior to a meal along with Source Naturals Daily Essential Enzymes. These enzymes are great because they are high in Protease and Lipase, yet low in Amalyse (the cause of my white tongue). They also greatly assist in regular bowel movements.
I still seem to have extreme sensitivity to things, and when I recently took melatonin over a period of several weeks for better sleep I ended up passing out so severely that 911 was called.
I’ve also had some severe pain in my right knee, and recently experienced a deep pain in my upper hip upon awakening. The cause appears to be Ankylosing Spondylitis or more likely, Spondylosis (osteoarthritis), which is a chronic inflammatory disease creating pain and inflammation of the joints between the vertebrae of the spine and the joints between the spine and pelvis (sacroiliac joints).
This condition can also cause fatigue, loss of appetite and weight loss amongst others. Cortisone can suppress inflammation and slow joint damage but in my case it could be risky. TNF blockers may also be risky given my sensitivity, so it seems I need to perform regular exercises such as range of motion with a focus on posture.
A follow-up blood test was positive for having some form of inflammatory colitis (inflamation in and around the upper and lower intestine) and I was prescribed a non-systemic corticosteroid (Entocort). Also known as ulcerative colitis (UC), this can cause health problems in other parts of the body such as joint pain, arthritis, eye inflammation, skin rashes, kidney stones, fatigue, weight loss, etc.—all of which I’m familiar with.
While my condition and symptoms don’t seem to exactly match the conventional reasons for the prescriptions I’m taking, it’s clear that poor digestion is at the heart of my problem [aided and abetted by the Hiatus Hernia and troublesome repair].
My present doctor seems to be finding out more about the real causes of my medical issues than any other doctor I’ve met in adulthood. However, I recently had a very painful episode in my lower spine, so it was suggested that I take a course of Remicade (to treat the Ankylosing Spondylitis). Patients treated with Remicade are at increased risk for infections, including progression to serious infections leading to hospitalization or death. Prior to treatment, a TB test is required. The trouble is, I always get a false-positive result for this test, because I was given a BCG vaccination in England to prevent TB—its not given in the USA.
The thought of having antibiotics for nine months followed by Remicade is deeply concerning not only because of my sensitivity, but a number of patients taking Remicade who tested negative for latent tuberculosis prior to receiving Remicade have developed active tuberculosis. This is because Remicade severely reduces one’s immune system.
Faced with this apparent death sentence or severe pain, I decided to approach this bizarre and convoluted medical condition with a totally different strategy. A friend in Colorado mentioned me in a spiritual healing circle and the information given was extremely profound.
The main essence of the message was that I needed to see a shaman to acquire spiritual and emotional healing. It took a little while to find someone I was comfortable with and I chose to go to Glenwood Springs, Colorado for just over a week. The bottom line is that the treatment worked very well particularly for my stomach and general disgestion. I’ve increased my fiber intake and have started eating vegetables. I’m also increasing my exercise with a focus on the abdominal area. Taking foods and supplements rich in enzymes are assisting my digestion significantly. Papaya fruit for example, aids in protein digestion, Green vegetable capsules assist me while I make the transition to eating more vegetables and a wider range of fruits. Pineapple guava fruit aids the lower intestine and I have several of these trees. I may have needed more time, as I still have problems with my hip, so I need to address this issue shortly.
I’ve found that I no longer have severe abdominal pain that I had almost every time I laid down, and I no longer need to take what seemed to be daily doses of Milk of Magnesia for the treatment abdominal pain and constipation. I don’t cry on a dime when I think of certain traumas in my life so the absence of emotional tension is also allowing my body to heal. I’m also focusing on being less rigid and judgmental which tends to reveal itself as blockages in one’s system.
The Ankylosing Spondylitis however, became progressively worse, even with being on methotrxate (a chemotherapy drug) that created all sorts of issues. I stopped taking this drug, and because there is no medical cure for this condition I decided to try a spiritual hypnotherapy technique called Quantum Healing Hypnosis Therapy (taught by Dolores Cannon). I traveled to Montrose, Colorado and had three sessions over the course of about a week. It seems that much of the root cause for this condition relates to a significant amount of sadness in my life and once I was able to release this and allow healing entities to effect a cure, the result was amazing. I no longer woke up every hour or two with hip pain, or suffered pain after sitting for too long.
Even though I consider that the Ankylosing Spondylitis has been cured, there is still damage within the hip due to the calcification of the joint. Each night I apply DMSO along with Topricin that eliminates any discomfort. After a bath I apply Maha Narayan Oil along with some DMSO. DMSO is essentially a carrier that allows greater penetration of substances into the body.
In 2012, the fatigue and other symptoms started to become worse again, and a blood test revealed low sodium levels, so the issue of secondary adrenal insufficiency became the focus of re-examination. I was referred to an endocrinologist.
Doctors tend to fall into a number of camps, often involving compassion or arrogance. I consider my present doctor to be both compassionate and competent, but the endocrinologists I’ve visited with have been incompetent and/or arrogant. I’m by no means racist, I’m interracially married, but all of these endocrinologists are Persian, so I do wonder if there is some karmic issue here.
It seems that if you inform them of some condition, they want to prove that you are wrong. One endocrinologist arranged a test by giving me an unmarked bottle for an overnight metyrapone stimulation test! An insulin tolerance test is now considered as the gold-standard to evaluate the integrity of the hypothalamic-pituitary axis, but it requires close surveillance with inherent risks of severe hypoglycemia; it also has specific contraindications with certain patients, like myself, along with high costs. Metyrapone testing is considered to be a sensitive alternative test to evaluate ACTH reserve but is now rarely used in the USA.
The bottom line is I probably will not be able to medically determine if I have some sort of Secondary Adrenal Insufficiency, but whatever the condition is, it was likely made even worse by the unnecessarily high and continued prescription doses of cortisone acetate.
In 2013, I visited a nasal specialist, as my rhinitus seemed to be getting worse. A scan of my nasal area revealed a distorted septum, so an operation was performed at the end of July. The surgery created all kinds of issues, I reacted to the anesthetic, pain medication and antibiotics and suffered fever, chest pains, nausea, and chronic fatigue. I went to the ER several times, which proved to be pointless, as they were unable to do anything. Taking massive doses of cortisone and sodium would provide some temporary relief, so I needed a better solution. The level of fatigue so severe at times that if I was offered euthanasia, I’m pretty certain I would have accepted this.
I felt the need to go to Sedona this time for some spiritual hypnosis and try to determine any past life karma that has initiated my medical experiences. I again had three sessions over the course of a week, one hands-on healing, a past life hypnosis session and a spiritual hypnosis healing. The only problem I encountered was that I tended to go too deep, beyond the Akashic Record Library (to determine root causes), and into a rather strange realm. The healer mentioned that I actually levitated! The spiritual healing worked very well for my fatigue.