Last day of holidays so back to work tomorrow ugh The people are lovely and the job is interesting but high energy. It's also tutoring and i worry how my throat will cope.
My throat is actually feeling a lot better, just occasional moments of soreness. But my soft palate still feels irritated most of the time. That awful bile/acid taste is hardly there. My mouth and throat does get very dry at times which is yuk. I think the honey is helping my throat.
Rang the dr today to talk about referral for the endoscopy but she's away till 1st Feb, so I'll ring back and get an appt then.
Jude: hope your week surprises you for the good, and throat holds steady.
My (maybe or maybe not relevant) news: Visited a friend yesterday who operates a local music store, I was seeking help with my home made didgeridoo -- PVC about 53 inches long (is now) and a fitting, about a 4 dollar investment total. I had kept this thing around for a few months. After very quickly putting it together, I found the embouchure difficult and ran out of breath too easily.
Turns out it was cut way too long to play properly, so I trimmed it. I tried last night and wow! Very helpful, lots of wind and I even got some beginnings of circular breathing going. Felt very calming and gave me sense of achievement.
Why do I bring up didgeridoo -- because there are studies showing improvement in mild to moderate apnea, and months back I thought I would try it. So now I can -- but also I was thinking, the mechanism for improvement is based on toning up all the areas that supposedly collapse for apneics, pharyngeal tissues and maybe some in the back of mouth.
Anyway, this morning feels great for throat. Maybe that 'buzzing' made for a nice massage. Could possibly have a therapeutic effect for LPR discomfort too? Now that I have correct length of tubing I am finding creating the sound is pretty easy.
So you'll have an easier week to get up to speed for the harder stuff, sounds good. You are probably a lot better at managing than I am... I don't have a 'work schedule' and have to sort of create one which is very hard!
Well, Jude, that is a good, no a great, GREAT idea. With my magical LPR erasing didgeridoo powers I will be in demand, booked years in advance for exotic places, healing the rich and famous by their sunny swimming pools. These folks will be so grateful they will underwrite great gatherings for the general public in stadiums around the world, I will be stationed playing my PVC didgeridoo while people shuffle past.
I don't understand much yet about the effect of didgeridoo on the throat, pallete and pharynx, trying to observe though as I experiment. I'm getting better though, getting a feel for how to make a seamless sniff of air happen while I get rid of air from my cheek, I guess that is circular breath. It will take practice to go for long periods (half a minute, my limit so far)
But, guessing... the vibratory effects go to these areas, the throat and mouth are throbbing a good bit while playing, and I guess toughening up a little, not so saggy. Not sure about the effects on LPR throat symptoms, but maybe it could be a bit of local massage to the areas involved.
Other than holding a vibrating drywall sander on one's neck, I don't know how one would recreate this... hmm another entrepreneural challenge there. Actually they make TENS units for outside places on the body. It sounds like a very dangerous thing to goof around with, but what about mild electric current driven contractions of throat muscles, a la TENS. We just have to figure a way to get little probes down our throats, no problem, eh?
perhaps a small hand held massager not to be confused with messenger, on the throat. Will be interesting to see how it goes for you. Then I'll have to head across the ditch and pick up my very own didgredoo.
Smiling at the article in the news - Musician finds cure for silent reflux. Shoppers taken to hospital after rush on stores selling didgredoos.
Deep breathing is marvellous - that is doing it the proper way using the whole chest/disphragm area.
I'm new on this board. I feel a bit like an intruder here, but I've been following the Vitamin D threads with great interest,m and I just wanted to mention that my sleeping pattern has improved greatly since increasing my D3intake.
I have had insomnia for years, sleeping for a couple of hours and then waking up "tired but wired," as one of you expressed it. In fact, I have a feeling that stress and extreme sleep deprivation brought on my current bout of LPR last fall.
A couple of weeks ago, only a day or two after taking B12 plus several thousand IUs of D, my sleeping improved dramatically. Unfortunately, I haven't had a chance to find out what my level is, and I'm afraid Eew won't approve of my guesswork. I'm hoping that the LPR will diminish as well, but I know it takes a while for throats to heal.
Last edited by Administrator; 12-20-2012 at 06:44 AM.
Hello Garlicgal, so glad you have been following this thread and tried Vit D and B12.
I've got a hunch that Vit D does so much more in our body and when our levels fall low our body's biological systems begin to break down. In our case we got LPR. Our esphogeal system collasped. The spinchters of our esphogus are small muscles and Vit D strengthens muscles. Other people get a range of problems. I'm so grateful that I never gave up on trying to find an answer to my severe LPR and the searing pain that accompanied it. My life was in ruins and I was in excruciating pain. In addition, I never even bothered to tell my Drs, because they dimissed and brushed me off so often, but I had horrible shoulder joint pain as well. I laid in bed for 5 solid months after the fundoplication pleading for help from my Drs. They referred me to mental health. I kept telling them I was a happpy person and that all that was wrong was that I was in horrible pain in my throat and head. It was a nightmare.
When the new ENT confirmed that I was burned severely it was all I could do to keep my composure. I was livid. But I kept moving thorough all their algorythms knowing the whole time there was something else wrong. It's a horrible feeling to know your Drs are wrong but you can't figure out what the answer is. I had to research extensively to really understand the logistic of my problem. From there I looked for articles on strenghening muscles and I came across Vit D over and over again. All this time I couldn't even put on my clothes or wash my hair without horrible pain. I struggles to push myself out of bed every day and try to be a wife, mother and granmother. I felt I had nothing to lose and deceided to do my own treatment plan.
I found this thread and I began to do my own experiment. My pain began to slowly fade when I started Vit D. I began to sleep through the night within days. I couldn't believe the transformation in my health and pain levels. It took about 6 months for my throat pain to slowly fade. I still have LPR but so much less. If I watch what I eat and don't over do it I can go many days, weeks without a LPR burn. And when it happens its only a touch of LPR. Not like before. I was literally burning to death every day for 2 years even after strong PPIs and a fundoplication surgery. My Drs just kept saying, "sorry there is nothing more we can do for you."
I don't care what any Drs say Vit D works, it lessens the severity of LPR. My sister suffered for 40 years with severe headaches and her migranes have disappeared. I had seen my brother in law have to take sleeping pills for years and could only sleep a few hours a night. He has such a great personality but he was tired all the time and had a hard time doing things. He is a police officer and really needs to feel good when he goes to work. For the last 3 months I kept telling him to get his Vit D checked. He finally did it and last week his test came back with a Vit D score of 12. Shocking that no Dr ever tested him. (Shocking no Dr ever checked my Vit D in my whole life!) He was talking to my husband last week and asked to talk to "Dr EEW" and he couldn't thank me enough. He said he is sleeping through the night and when he wakes up he doesn't feel depressed and tired. He feels so good. His Dr put him on 50,000 IU of Vit D per week and he has to test in 3 weeks.
It is my firm belief that a great percentage of people around us are deficient in Vit D and it will lead to declining health. Like the Vitamin D Council says...its every patient's right to know their Vit D level throughout their entire life. I for one will be taking that into my own hands and directing my Vit D care. I will not be waiting for a Dr to take care of that for me. They have no idea how much help they could really give their patients if they would advocate for their patients and think out side of the box.
Medicines and pills deal with the symptoms. It doesn't address the problem. I think all the time about all the babies, children, young adults, mature adults and elderly suffering from horrible diblitating illness that is caused by low Vit D levels. Such an easy thing to fix and so inexpensive...but more importantly it would relieve horrible suffering of people all over the world. I'm so disgusted that more isn't being done by the medical community to promote testing and insure that patients have this important test given when they go in for routine issues as well as when their sick. Its like being in the twilight zone of health care.
Last edited by Administrator; 12-20-2012 at 06:48 AM.
Don't feel like an intruder - we're all new in the beginning, and most of us are searching for answers, help and support. EEW will see you right for sure.
It's a tough old thing this LPR and we all go through the ups and downs, and fears and anxieties.
Sadly for me my Vit D was not too bad, and I'd been hoping that may have been the answer as I don't sleep too well either. Never have a full nights sleep. Somehow knew I'd be the exception to the rule.
I'm off to the Dr tomorrow with my list of issues and I know she'll refer me for the endoscopy - what fun! But I'm so over it I need to know what's going on. There is something else going on I am positive, and my mouth is so dry it is almost unbearable at times. Might do a post and see if anyone else has that as a real problem. I've done some research and see about Burning Mouth Syndrome and it has me wondering. It can be caused by reflux, stress, jaw clenching - yep I have them all. I also have dry eye and thinking maybe there's a connection.
As EEW says, a shame we have to be our own doctors, as they go hmmm not sure what that is. But my GP will listen to me so that is great. She doesn't even roll her eyes when I get my list out, but always says something like, "No, that's good as you don't forget anything." lol
Good luck and stick around.
The following user gives a hug of support to JudeNZ: eew (02-02-2012)
The Following User Says Thank You to JudeNZ For This Useful Post: eew (02-02-2012)
Thanks for the nice welcome! Isn't the internet a fabulous tool? It amazes me to be able to connect with people all over the globe. I live on the east coast of Canada, so we are covering a lot of territory. More important, the internet is such an empowering aid.
Eew, like you, I have been obsessively researching everything I can find, including various forums, scientific articles, opinions, etc. Thank you, Mr. Google! I was aware that Vit D was important in preventing colon cancer, which seems to run in our family, but Gominak's ideas were a real revelation. Eew has taken this a step farther for me in suggesting that D strengthens the LES (and maybe UES?). If correct, this is like gold. We all know (I think) that prescription drugs don't do much for LPR, since the most minute quantity of acid can damage the delicate throat tissues. So the LES and UES are the magic key.
Why aren't the doctors/scientists doing more research on ways to tighten those gateways? Maybe some are, but the robot-like response seems to be to whip out the prescription pad.
Jude, you are so lucky to have an open-minded family doctor. I had an endoscopy a few years ago, and shivered and shook in my johnny shirt in the little booth they make you wait in (I kept saying to myself,"It's not too late -- I can still get up and walk out!"). Anyway, the last thing I remember was being asked to open my mouth and swallow something. So I missed the whole thing.
I have a dry mouth problem, too. Not sure if it's caused by our wood heat, my jaw clenching, the reflux or what. I'd be interested in what you can find out.
Eew, I'm going to check out the Vit D Council site now. Thank you so much for sharing your story and all that great information. Your sense of gratitude is lovely to see.
Good wishes and healing thoughts to all,
Last edited by Administrator; 12-20-2012 at 06:49 AM.
The following user gives a hug of support to garlicgal: eew (02-02-2012)
The Following User Says Thank You to garlicgal For This Useful Post: eew (02-02-2012)
Hi Jude!! and Garlicgal: so wonderful to have such a great support group! Thank you so much. Life is sure looking up since I tested and started Vit D. I'm so happy about this new lease on life. We have so much to live for and I am so grateful that Vid D has been the answer to my severe dibilitating LPR. I was terrified of the PPIs and took them hoping it would help but they made me worse and gave me pnuemonia that I couldn't kick until I stopped the PPIs! And when I came out of a fundoplication surgery 10x worse it was devasting...and my Drs just wrote me off. I thought about all the things I had to do to say good bye to my daughters and family and get my affairs in order. I was withering away steadily 1-2 lbs a day in horrific pain. I sometimes wonder if Vit d would have prevented my getting a fundoplication surgery...I often ask myself that question. Well, lets hope the word gets out through patients sharing this info with their family and friends. I told my brother in law about it as he had been unable to sleep for years and took sleeping pills and still couldn't sleep! I kept telling him for 3 months to get a Vit D test. Finally he did it a week ago and it came back a score of 12! He has been on 50,000 IU of Vit D prescribed by his DR and he called a few days ago asking for "Dr EEW" (!) and telling me the morning depression and being tired and unable to do things has lifted. He is so happy I pushed him to do it. He bought his daughter a car few days ago and he said before he gives her the keys to the car he is going to make her promise that she will test for Vit D every year of her life. Now that is what I'm hoping will happen on these blogs, that the word will spread and we will influence the medical community to start their algorythems by testing for low Vit D. Together we can all help the Vit D Council and Drs like Dr. Gominak get this critical lab test done on patients. Thank you all for testing and sharing your findings and what your treatment plans for yourself are. All our observations are important to share. Lets look around at our family and friends and see how their tests turn out. Well, I'm off to get ready for family to come for 4 days for the Super Bowl on Sunday. I'm not a game person but I love watching family and getting to share their excitement and relishing life once again after LPR.
The following 2 users give hugs of support to: eew garlicgal (02-02-2012), JudeNZ (02-02-2012)
Did I mention that Dr. Leo Galland, an open-minded MD who claims success in treating reflux, prescribes calcium citrate as part of his therapy? He advises about 250 mg in powdered form -- not tablets -- after each meal, as an aid to quicken esophageal motility and tighten the LES.
It has just occurred to me that, since calcium and D work together somehow, this may be another part of the puzzle. Eew, you're much better than I am at connecting the dots.
He insists on a powder or liquid so that it is available in solution in the lower esophagus and stomach. I just break open a capsule on a spoon, wet it a little (otherwise it flies up your nose -- yuck) and down the hatch. My biggest problem is taking the right amount of magnesium, as calcium can be so constipating.
I'm wondering whether I caused some of my reflux problems by dosing too heavily on magnesium the past couple of years, hoping that it would help me sleep and get regular. (It did't really help the insomnia, by the way.) I hardly took any calcium at all. So maybe that weakened the LES/UES, since magnesium relaxes other muscles.
I've been exploring more stuff about D3. Very interesting. And I'm nagging my relatives.
Lovely to have you here garlicgal. I come and go depending on my mood. When I feel anxious I am best to avoid the issue and get on with life. I also do a lot of researching but once again if I feel it is causing me to become feel focused on reflux I stop for a while, as that's not healthy for me.
Went to the Dr this morning, and she feels there is one story but with 2 parts. She still feels the reflux is the baddie in all this, but wonders if it because I'm worried about my throat, and the anxiety is causing more acid to be made in my stomach in turn making the reflux worse.
She acknowledged that losec doesn't work for me, and wants me to take another drug as a trial for 4 - 6 weeks. I'm sure she saw the look on my face that said, 'not another nasty drug', and I saw the look on her face in return lol. I have to go back in 3 - 4 weeks to have a mole and a csyt removed, and she would check then and see how it's going. Then I could be referred to an ENT. I asked why don't we just do that now as this has been going on since July and it's affecting my job, and it's time to find out. She also noted with my occupation (tutor), that people who teach or sing often get nodules on their vocal cords and that was a possibility. So an ENT can at least perhaps find some answers. They can't always tell you what it is, but they can often tell you what it isn't.
I feel it's time to take that next step and as long as they don't find anything sinister I'm all good. I'll be glad when it's over though. The Dr did say she wasn't sitting there thinking there was something sinister going on, so that was reassuring.
Interesting garlicgal you also get the dry mouth - that certainly gets worse for me after tutoring. It also will kick in after a lot of dairy products. Also you clench your jaw and teeth, and I bet your also wonder it its all tied in.
I did say to my Dr that I rarely get a decent night's sleep, and how much does that play in the scheme of things. She's doing a whole raft of blood tests as apparently there are a couple of conditions that can cause dry mouth, so she is listening.
She looked in my mouth and checked it out fully and never said a word, and I stupidly meant to ask her if it still looked red and inflamed, as I wanted to know if the active manuka honey has made a difference. Don't you kick yourself when you forget something that simple. In the meantime I have to phone the specialist in the middle of next week and hope I'll be able to have it done pretty soon.
The following 2 users give hugs of support to: JudeNZ BrienE (02-03-2012), garlicgal (02-03-2012)
Oh Jude, I'm so sorry you are still suffering and going through so much to get tests done while you are working and trying to keep your life going. Its so hard. Would you be able to get a flash light and look at your throat and mouth and describe how it looks to us. From July 2009 until recently my throat looked really angry red with white opaque stuff all over it. Actually that white opaue stuff is the body trying to protect the delicate throat tissues. I had white burn marks up to my molars. My dentist would check to see how far the burn marks went up as well as the ENT Drs. Lucky it didn't go into my mouth. Just to my back molars but not beyond. However, I do feel the acid vapor/gas went up into my nasal cavitity as I was always stuffed up when I woke up and behind my nose hurt from the burn. That is why the Drs I saw in the beginning of LPR insisted I had allergies and gave me Flonase. It did nothing to help me. I got worse and worse. I've read that milk causes more acid to pour into the stomach as well as red meat and chocolate and alchohol. Red meat takes 2-3 days to digest. Fish only takes 45 minutes. So it causes less acid to pour into the stomach. I gave up red meat and I still only have it once and awhile. I wasn't able to give up milk so I bought non-fat milk 100% lactose free with added calcium. It's what I still drink as I just can't give up milk. I gargle my throat still with baking soda water. I feel that it helps nutrilize the acid vapor that is rising up. Also, I have a Tums antacid tablet before bed to nutrilize the acid in my stomach when I go to bed. But more and more I don't need it as much as I heal from LPR with the Vit D and sleep. Additionally I still use spring water that I buy from the grocery store. Its alkaline and I had it tested and it has a PH of 8. I understand how dibilitating LPR is. And Drs just aren't able to help us very much. Yes, I do agree, its important to rule out multiple things that could be going on. I remember in Oct 2010 the GI tried some medication to speed up digestion. It literally scorched me to death. It was a nightmare. I couldn't do anything with my family. I'm sorry Jude, I can't remember what your Vit D score was? How long have you been on Vit D so far? How about your B12 score? My memory is not good. I apologize for not remembering. Don't forget to carve out 20 minutes to sit in the sun every day if the sun is shining. There is something in direct sun on our skin that can't be duplicated by the Vit D 3 drops...hang in there. Let us know how the tests go.
Garlicgal: welcome to our discussion. So happy you have joined us. I haven't studied the ratios of calcium:magnesium but I do know its important to take some calcium/magnesium when your taking Vit d. Also B12 should be tested. I read somewhere that there is debate on increasing B12 levels to 800. Right now they are set too low. My level in Oct 2011 was 620 or so. So I'm taking a good B Complex every other day for that. My sister's is around 400. I suspect getting B12 higher will be beneficial. I never thought I'd be taking vitamins but with LPR I had to search for something other than medications as they all made me burn to death. All citrates (including calcium citrate burned me terrible) and nitrates burn me. I still look at everything I eat to make sure these two items are not in it. I haven't had any lunch meats as they have nitrates as preservative in them. Also I can't take anything but acetaminophen for pain. After I had the fundoplication surgery my surgeons sent me home with medications for pain, one I can't remember and also ibuprofen in liquid form and I burned severly on both of them right after the surgery that was suppose to make me better! My sister is a nurse practioner and looked up both meds after surgery and told me to get off them immediately. She looked them up and they shouldn't be taken by GERD or LPR patients. She was shocked that my surgeons would give me meds for pain that should not be ingested by GERD/LPR patients much less a patient just out of a fundoplication surgery. It's been very difficult, as I found I had to really watch and keep reminding my Drs that they had to look up any medication they gave me and make sure it didn't cause more acid to kick up. After my thyroid removal in Feb 2010 (yes 9 months after the fundoplicaton surgery) I was shaking with fear at the thought of what was I going to do for pain after surgery. But I was able to manage ok with just acetaminophen thanks to my sister's insights and research. I would not have connected the two. I would have followed what the Dr said to do for pain. After that I had it written across my medical chart that all medications had to be researched and checked to be sure they don't cause acid reflux. It is very difficult trying to walk through all the mine fields of LPR.
Last edited by Administrator; 12-20-2012 at 06:52 AM.
I see that I have been repeating myself re the calcium. Good grief!
I too see the hazards of becoming too obsessive. If this was summer, I would be outside in my veg garden instead of looking out at the snow and frozen ground and fretting about my throat. At the same time, it's very helpful to get support and advice from people who understand.
Although I am predisposed to digestive issues, perhaps because of being chronically tense and high-strung since childhood, I am almost sure that this recent bout of LPR was caused by unusual stress and sleep deprivation. I had spent months fretting about a publishing project I was trying to handle on my own, and for weeks rarely got a good night's sleep. I am a great believer in the power of the mind to cause/cure illness, and had that proved to me when I was recovering from a herniated disc.
The catch-22, of course, is: what to do when you're worrying about being overly stressed, or lose sleep worrying about sleep deprivation!
What helps me immensely, Jude, is acupuncture. I actually fall asleep some days on the table, and feel nice and loose for the rest of the day. Outdoor exercise is super important, too. (Long walks helped my back more than anything, by the way.) I take melatonin every night. I'm not sure whether you can buy it in NZ. Also started taking a spoonful of manuka honey at bedtime. My husband says honey is soporific, although I'm not sure how he would know, since he could fall asleep on the sidewalk. I've found suppers of tryptophan-rich food, like lobster, makes me sleepy. And lettuce, too, for some reason.
I keep promising myself to start meditating every day, and maybe today I will. My acupuncturist counsels yoga to stretch those tense back muscles. I hear tai chi is excellent. Listening to music on my mp3 player helped me a lot when I was going through the worst of the 3 a.m. blues.
I repeat myself often - so no worries there at all.
It seems you and I are similar in a lot of ways. It is all a balancing act isn't it between researching to help ourselves, but not falling into the obsessive trap and becoming too self focused.
It is summer here, but it's rained so much sitting in the sun has not been much of an option. Australia is having similar weather issues, and is the worst summer I can remember.
I've only had the digestive issues since an emotional collapse back in late 2001. Like you, I also know for a fact that my LPR is worse when I am under stress. The last few years there's been a lot of that with some family crisis moments, and my trying to hold everyone together. I need to look at my belief system and learn to become a bit selfish at times. I'm not good at putting myself first. Maybe I just need to toughen up lol.
Vit D is not an issue for me as mine was 65 which fits in the okay range. But lack of decent sleep is, and I wonder if it's more around sleeping issues, and for those with a low Vit D supplements helps them sleep. You're so right when you talk about the Catch 22, how do you stop yourself losing sleep worrying about losing sleep!
I did a couple of acupuncture sessions before Christmas, but didn't find this time they helped a lot, and the cost mounts up. But you've remidned me to go back to Reiki/healing as that is a wonderful relaxing experience. She also is not costly. Meditation is a wonderful thing to do, and like you I believe our mind is the most poweerful tool in our bodies. It can make us sick, so why can't it also heal us.
Exercise is great and I need to get back into that regularly again as well. Did go swimming yesterday which was wonderful, and I know when my back was really bad a few years ago I found swimming an immense help. I'd swim through the pain and it slowly improved.
Will have to google melatonin - I certainly eat a lot of lettuce at the moment being summer time here, and also a lot of fish. I do think diet plays a big part in LPR effects as well, and I've been trying to work out what helps. But then you get days when you eat all the wrong foods and not a difference. So I look back at anxiety levels, and ask myself if that is really my problem. When I'm happy and busy I don't even think about LPR. Although the severe dry mouth always reminds me.
Is it the Vit D in some people that causes lack of sleep. Is it stress in others? Is it bladder frequency causing lack of sleep for others - (yes that's me). Is it from jaw/teeth clenching that means our sleep is not relaxing (me again). Over active minds (oops me again lol)
All interesting - and if only we had a magic wand!
I spent the weekend on the computer, and came across a couple of things I didn't know or had forgotten:
I guess you're supposed to take D3 with fats for better absorption. Eew, you probably are way ahead of me on this. Also somewhere I ran into come comments that D at bedtime can cause sleep disruption.
Interestingly a naturopath, says that the blood level considered sufficient in the U.S. is too low, and that Japan and Europe consider 500 to 550 pg/mcl the minimum. (Don't ask me what those numbers mean!) I probably will never find out what mine are, but I'm taking 1,000 whatzits anyway.
Hope you are all okay. Hugs.
Last edited by Administrator; 12-20-2012 at 06:54 AM.
I have been following along with you. I am a patient that fits Dr Gomack's theory in that I have B-12deficiency, vitamin D deficiency AND LPR. Chris Kessler is absolutely right about the b12 as in using Methylcobalamin AND that the ranges are way off. I am living proof. I am very intrigued with your Vitamin D theory and LPR. I am working on that now. Might I suggest that you consider using sublingual b12 along with your b-complex. A group of us have tested the brands to make sure they are of good quality. It really helped me.
Just got a blood draw today to see how I'm coming as to raising my levels of D. I'm am committed to figuring this out. LPR is miserable. The B12 helped a lot, now I'm hoping the vitamin D will be the final missing link. My D level was 20 about 3 years ago, they gave one 50000 ui dose and I have only occasionally supplemented and I live in a Northern climate. Not good. Thank you for suggesting that LPR might be improved with D.