Hi everyone: gosh, reading all your posts makes my heart break. If you have read some of my previous posts back in 2011 or so I was working through unbearable pain and unable to drink even water. My story is too painful to repeat. However, I researched and researched, studying the parts of the esophagus until one day, in the middle of sobbing uncontroably from unending searing pain, I must have put the pieces together well enough to connect the dots.
Because I have used thyroid hormone since 1996, I knew how powerful a hormone is to ones health. My eyesight improved immensely when I went to the eye doctor in 1997. He could not believe how much my eyesight improved. He asked me what had I done (in shock). I said "nothing...but my endocrinologist insisted I was at a 18.8 or something on thyroid and said I had to get on it right away". My eye Dr said, "That's it, the thyroid hormone". I didn't think much of it until that day in the autumm of 2011 where I had reached a point of complete desperation of severe searing LPR.
I had been studying LPR and the and pieced together that the esophagus had two muscles (sphincters) that open and close to keep acid and vapor out of the esophagus. The fundo surgery I had in May 2010 seemed to improve my PH score from 40 down to .4. But as you know I came out 10x worse and my GI and ENT scratched their heads. Actually the GI became angry with me and basically refuted that I had LPR but refused to send me out and pay for a second opinion. I can not explain the desperation of searing to death and no one takes it as a crisis. I was sent to behavioral sciene and asked if I had any trauma in my life. It was hard to keep it together as I was in so my pain...just like a burn patient. Only with no pain medications. But I want to keep moving here and tell you what helped me.
That day in August 2011, sobbing from complete desperation I framed my research into a question on a web question, "what strengthens muscles". And to my surprise my eye caught one article that mentioned Vitamin D is used by athletes to strengthen muscles. I read it and was filled with a feeling that this might help me.
I hit the email to my primary and told her to have a Vitamin D and B12 test waiting for me at the lab the next morning. My D score was 25. I looked at it. Low but I had to study why it was lower. It had occurred to me that I stayed out of the sun since the early 70's...but then I remembered that for the last 5 months I had been outside with my grandchildren around the pool. I suspect that prior to that I was probably lower in the teen score and the 5 months in the spring and summer was the first time I was outside in 40 years as we had built a new pool. So the mystery was starting to cause me a lot of questions and the full picture became clearer.
I then went on the web and researched everything on Vitamin D...it's a pre-hormone I read and its from the sun. It's not a vitamin!! I was shocked. I ask myself, "how is it that I didn't know that?" Somewhere in the recesses of my mind I think I knew but I never connected the dots. And then I remembered how when I took thyroid hormone in 1996 I had an enormous improvement in my health. I had a hunch I had avoid the sun for 40 years and on top of that worked inside all my life, was overweight (which draws D out of the bloodstream), was way over 50 years old (from the age of 19 to 50 years old the ability to make D on the skin dimishes by 70% more or less; another words aging limits our ability to make D hormone on the skin), and I lived above the 30 latitude (which limits severely D production on the skin). I had all the variables for serious D deficiency. But modern medicine says if you are at least a score of 20 (it use to be 30 but they dropped the low end of scoring to 20 around spring of 2012) So if you get a score now of 22 you are told "you fall within normal limits"...which from my research is darn scary when I think about it too much. I feel that it leaves the patient wide open to get anything.
Then I researched how much D should I take? No real definitive amount found on the web. Some Drs say 800 IU...some 1,000 IU a day....and others 2,000 IU. Some scientists say it should be closer to 4,000 IU a day. And others say it should be based on weight...35 IU of D3 per pound each day.
I didn't know which way to go. But I knew I was taking over my own treatment plan as my ENT, GI, and other specialist could not help my desperate situation.
In addition in April 2011 I had developed incontinence and severe pain my both my shoulder joints. I could not lift them and I had excruciating pain if I tried to lift them a 1/2 inch. Life for me was falling apart and I was ashamed that I was sick and hid it as much as I could. I didn't even tell my Drs these new symptoms as they where so indifferent...like I was a bother. I was getting worse. I felt burning in my back half way up and it traveled on the top layer of my skin down my arms and legs. I was succumbing to this illness that people didn't understand...and was so sad that even my partner in life thought I was losing it.... I look back and realize that I had a strong desire to live and felt there had to be an answer.
Anyway, I received the Vitamin D3 3 days later from a online order. First time I ever ordered anything like that. Within 24 hours of taking 6,000 IU of D (and I didn't know what I was doing!) the incontinence and shoulder joint pain disappeared never to return! Honestly I felt so lucky...I still can not believe, that for myself, I connected the dots. It took my a few months to figure out why it went away...because I was always trying to understand it from from a factual science based reason. I think the incontinence went away because it strengthened the muscle of the bladder.
And I think the pain of both shoulders (that virtually had me paralyzed from pain) was probably something like rickets or osteomalcia.
The incontinence and shoulder pain never returned and its 2 1/2 years later.
And as far as LPR it took longer to fade away. But remember I had severe severe LPR. The kind that kills the patient eventually. The LPR immediately, and slowly got better. I'm not cured. But I'm about 99 % in the summer (I sun bath now in the skinny on my back and front for 11 minutes each. I take a timer with me so I don't over do it. And I don't worry about cancer. I have researched that low levels of D might be behind the reason for skin cancer. Not in every case but generally speaking. I had first stages of melanoma in 2003 and after reading extensively I come away with a more comfortable feeling that with me D levels hovering at 70 score, that reasonable amount of sunshine on my whole body each day in the spring/summer at 1:00 pm is ok. But I do it with a timer so I don't burn)
The only regret I have is that I was too careful to start my D at a lower amount. I should have gotten my D to a score of 70 as fast as I could but I was all alone in my experiment and I'm not a Dr or a scientist and was naturally careful of not overdoing it. So I suffered more than I needed to. I could have gotten my LPR under control faster once I started D. I raised my D levels very slowly. I'm still careful. Since I take D based on my weight (35 IU per pound of weight) I go in every 3-4 months and test my D score and keep it around 70. I think because my muscle tone throughout my body was in atrophy due to so many decades of staying out of the sun.
Oh and I try to take vacation lower in the latitude of the planet and sun bath at stronger latitudes.
I'm not cured 100% but I have a life now. I just had to share. I don't know if I was just lucky or if this could help other LPR sufferers. All I know is the strongest PPIs and surgery made me 10x worse. And I have a 99% improvement in LPR. I feel so lucky. I hope that whatever you do, don't take someone's word, study it. Research. Test. Don't take anything indiscriminately. I wish you all the best. My eyes well up when I read how much you all are suffering.