Bear with me, this will be a longish post. But this may help some people in the end. Up until 3 weeks ago, I could not drink a glass of water without getting heartburn. In 2009 I was diagnosed with GERD (which by the way is not a cause of anything. It's just another name for acid reflux symptoms, so no more a diagnosis, than saying you have fibromyalgia when you complain about
muscle pain, which I was also "diagnosed" with in May) and Barrett's esophagus (damage to the esophagus lining) from the untreated acid for 9 months. I'm not overweight. I eat a very healthy Mediterranean diet, do not drink any soda, cook all my meals, and do not smoke; so there was never any dietary reason for me to have such extreme reflux symptoms. Back then, the GI put me on 20 mg of omeprazole daily. While the reflux was controlled for the most part, and the Barrett's was healed eventually, over the course of the next years I started getting other symptoms and an aggravation of old ones: stuff stuck in my throat, awful muscle aches around my neck and shoulders every morning then lasting all day, fatigue, allergy symptoms getting worse, dehydration and electrolyte problems from constantly urinating every 10-30 minutes. Whenever I tried to go on a vegetarian diet (which I did in 2013 and again in 2016), I developed new neurological symptoms (headaches, inability to sleep, shortness of breath, tingling in my arms). My hair also started falling out in 2013.
The more I read online, the more I was convinced that PPIs were interfering with my ability to absorb nutrients that require acid for stomach absorption: iron, magnesium and B12. My doctors all told me it was rubbish, even though I printed an FDA study from 2010 warning about
low magnesium by patients on PPIs. After many years of being miserable and countless thousands of dollars spent over the years on specialists --who's only solution was to increase my PPIs to 40 mg --I decided last year to see a surgeon about
doing the fundoplication surgery so I could be free of this horrible drug. After running a second manometry exam (which I do not wish upon anyone) he concluded that I was not a candidate for the surgery because I had no motility (movement) in my esophagus. If he closed the LES (lower esophageal sphincter) to resolve the hernia, I would not be able to get food into my stomach. Basically he concluded I had dysphagia (esophagus muscles did not work) and could not do the surgery.(A Blessing in disguise, I was to later find out) His actually was a proper diagnosis, but he had no explanation as to why the dysphagia occurred. He also told me my hernia small and that all my reflux was because of the dysphagia, not the hernia. Another doctor later said that because I had had Bells' palsy in 1998 maybe the paralysis of my face back then had affected my Vagus nerve and caused the muscles not to work. If that was the case I might be doomed to being in pain and sleepless for the rest of my life. But the Vagus nerve mention led to some more research...
After much reading (remember I was not sleeping either) which included functional medicine websites, I ran into some causes of dysphagia (and resulting GERD) being linked to autoimmune disorders. I'm no doctor, but I thought: this might explain why Histamine blockers work on GERD and why so many people with GERD also have rhinitis and other allergy symptoms. Allergies are an autoimmune problem. But can autoimmune disorders cause neuromuscular problems too? Sure they can. MS is an example. Can my dysphagia be the result of an autoimmune problem? That led me to find something called the Coimbra protocol, which is basically a highly effective treatment method for MS using nothing but high doses of Vitamin D. That was VERY interesting to me even though I don't have MS. But in the past, all my blood tests have shown very low levels of D. I found others on forums like this one wondering if other GERD sufferers have also had low levels of vitamin D. So I was not alone in making this connection.
I have worked from home for 20 years and I don't get out much. I had taken vitamin D supplements in the past, but because I never thought them connected to GERD I was not consistent in taking them. An aunt of mine who has had many similar problems and did have the fundoplication surgery (she is actually the reason I believed the doctor when he said a my hernia was probably genetic) also developed them after she started being a stay at home mom. I also read about
a case of an old woman in the hospital with may symptoms like mine who got better from some of the symptoms after the doctors replaced her Prilosec with Zantac. So this and other stuff I read led me to experiment with my own treatment:
I started weaning myself off of PPIs by replacing them with the lowest dose of Zantac on the market, as needed. (Because a specialist had once put me on 4 much higher doses of Zantac PLUS a 20 mg dose of PPI daily, there didn't seem any problem in trying the lower amounts. If I needed to, I could always switch back to PPIs or increase the Zantac) It only took 2-3 75 mg Zantacs per day for a week to be completely off of PPIs and the Zantac. Huge surprise! I thought for sure it would take months. In the meantime, I started taking 6000 IU of Vitamin D3 per day and getting sunlight every day for a minimum of 20 minutes. So as to give myself every chance, I also went on a very simple diet until my system recovers from 8 years of PPI acid imbalances. I basically eat small amounts (half of what you might eat in a restaurant meal) of only grilled fish or meats and steamed or raw veggies seasoned with olive oil and vinegar and lots of fruit. I make creamy vegetable or chicken soups and have that for lighter meals. It's close to my normal diet anyway. I just cut out: all grains, coffee, sugar, spicy hot sauces, and drink plenty of water except not at mealtime so a not to dilute gastric juices. I also take a 50 Billion live cultures probiotic per day to help replenish the good bacteria in my gut. It's been 3 weeks that I am free of PPIs. I imagine it will take a few months to recover 100% motility in my esophagus, but I can already tell that food is moving through my digestive tract faster. It used to take me 8 hours to digest a meal! Now I can feel it done in 3 hours and I CAN SLEEP. I still ocassionally get a slight burn in my throat right after dinner, but I take a DGL tablet or a Rolaids (I alternate to avoid dependency) and it passes. Eventually, hopefully this too will pass and I think I will be able to return to eating whole grains, bread and one coffee per day. The chronic shoulder and neck pain I had for 15 years is almost all gone.
Disclaimer: I'm not a doctor and I do not advocate this treatment for everyone with GERD symptoms. But if you suspect you do not get a lot of sunlight and you don't take supplements, look into your vitamin D levels and investigate this simple connection between GI problems and Vitamin D for yourselves. There is not a lot of info out there in the standard medical sites. But if you dig deeply, there is enough to get you asking questions. Don't take everything your doctor says as gospel. They are not God and don't have as much incentive to heal you as you do. Have a healthy degree of skepticism of quackery, but also be
open to new ideas. I didn't used to believe in the body's miraculous ability to heal itself when it came to certain disorders and when given the appropriate biological conditions. Now that I have my life back, I do.
Post Edited (Liberated) : 7/31/2017 5:06:49 PM (GMT-6)