Good on you for starting this one. My first report is I have just spoken to my Dr, and she said, "Oh, I recently went to a talk at the hospital about Vit D deficiency, and it looks as if it's going to be blamed for everything." She said that in a good way.....
The good thing was she knew something about it, and thinks it is an excellent idea to get my Vit D tested. The free clinics don't do it here so I will have to pay for it, but that's okay. She is going to fax a form through to me this afternoon. If it's not low then I'll for go for an endoscopy as I may have a polyp. That would not surprise me as being a teacher/tutor, my voice get a fair old hammering.
She said she can prescribe for me or I can get it from the health shop. But what I read tells me going through her might be best to begin with. I'm kind of hoping it is low, not only for myself but also for EEW. I was thinking I've had neuralgia a lot lately as well, and started to wonder if that is also a sign. But for now I won't put the cart before the horse and will see what the result of this test is.
Thanks again and hope you'll soon be on the mend..
Last edited by Administrator; 12-20-2012 at 06:59 AM.
Good job Brien and Jude. I like our new thread! I will be so anxious to hear over the next 5 months both of your progress on the Vit D experiement and anyone else who is able to take a Vit D test and what you decided to do. Kevin I'm pulling for you. Many of you have had LPR for years and years. It must be so hard. I could barely endure it for 2 1/2 years. I still have LPR but its so much reduced with Vit D. I read the article by the Dr that Brien mentioned, Dr. Gominack. It was excellent. I shared it with the head GI and he wrote me back and said it wasn't scientific. From all that I read, it appears it is based on science. I wrote Dr. Gominack and she mentioned that Dr. Walter Stumpf is the scientist who did the work on it in the late 1980s. So I'm going to try to web search his scientific work. Dr. Gominack also mentioned that Vit D and enough sleep is very important and to try to keep Vit D levels around 65. Too little Vit D and too mach Vit D can cause the same type of problems and make my LPR come back. Thank you Brien for mentioning her web opinion article.
Spoke with someone this evening who was taking D at 100,000 iu a day! for months... they were having absorption problems though so this was appropriate. So, eew... I don't have anything to report yet not of great significance. I did have a lot better night than I've had in awhile which I could attribute to many things, but I'll take it. Could be extreme deprivation meant a big crash was due, but I am open to another good night. The difference was I was able to stay on my back mostly, which surprised me.
As I shared, I am trying too many things at once to do good science testing D repletion. Can't complain about anything with the 50,000 megadose, and who knows there could be some subtle improvement. The same person I spoke with mentioned she was down to 11 -- and that her energy really improved as she got it replaced.
I haven't had any wheat I guess for longer than a couple weeks by now, and the sugar is cut down to almost nothing (except for a couple pears and a gluten free mini muffin).
I am eating careful portions, all that....... the "LPR" stuff is I would say 'under control' and w no PPIs -- I am having fewer occurances of a dry tongue, or dry tongue that gets even drier after drinking water (that is a weird one). But still have residual goopy throat after eating, it can move around as to location... epiglottis... entrance to esophagus, and laryngeal areas with the urge to clear. Well, it's more than that, there is stuff to clear for sure. However I've been thinking lately that it is important to work with time. If little things happen every day however slowly, headed in the right direction I think I'll be able to tell and be satisfied.
Had my Vit D blood test today and will know early next week. So fingers crossed - and I hope I'm not the exception to the rule.
Brien, pelased to see someone else who gets the dry throat and tongue - it drives me mad. Funny last 3 days I've not been talking in order to rest my throat, as soon as i talked today throat all dry. So maybe we need to stop talking hehehehe hahahaha
So glad you had your test Jude! Please do let us know your test score. Brien, LPR is the pits to have. There isn't a day that does'nt go by that I don't worry about it too. Always thinking about what I eat and is it safe. I still have small sensations of LPR and I try not to look at my throat as it never looks good. But my ENT's last evaluation said that the bottom of my throat was healed. I use to lose my voice too and felt I had asthma. I use to feel like I had 4 large balls in my throat. Vit D is not a cure but I'm hoping you will have the same results that I have and improve enough so that you can say your quality of life has improved. Only time will tell for all of us. It is worth experienting as our Drs can't help us.
Jude, Brien and everyone: I've done some further reading on Dr. Gominack lectures and it appears that Vit D hormone allows us to get the deep restorative sleep we need to heal and rejuvenate our bodies. Without that deep sleep our bodies start to break down. So it sounds like Vit D helps us sleep well, thereby allowing us to get the "paralizing" sleep we need to repair. Brien, can't thank you enough for sharing Dr. Gominack's name and opinions. It looks like she too has learned from her patients and connected the dots. Fascinating work! I'm getting to bed at 9 pm now and taking my Vit D. Based on Dr. Gominack's opinion, I am aiming for a score of 65 in my Vit D and aiming to try to hold it steady there. Low Vit D hormone as well as high Vit D levels cause the same problems. The body likes a narrow band of being between 60-70 in Vit D levels for optimal deep "paralizing" sleep. Dr. G indicated it may take awhile to get sleep patterns back to normal.
I can't wait to hear your news. Dr. G seemed to think that you will not show improvement while on high Vit D levels until you reach levels that you can go to maintenace. Dr. G's opinion is that one should take a Vit D hormone test every 6-8 weeks. I'm plotting out on my calendar the rest of the year the months I should take a Vit (hormone) D test. I can get my tests through my coverage but I doubt they will let me do it every 2 months so I have ordered a pack of 4/Vit D hormone tests. We should aim to get our scores to 65 on Vit D hormone and maintain it. I'm hoping so much we all improve alot with our experiment. Thank you for your efforts and experimenting with me. I'm so grateful to Dr. Gominack for the time she took with me to explain things. She is an extraordinary physician who has taken the time to study in detail her patients issues and connect the dots.
Last edited by Administrator; 12-20-2012 at 06:34 AM.
Gominack is quite a connector of dots in a world of paint-by-dots, it could be said. All this is fascinating!
I like her, she is feisty and her thinking is very easy to follow. She's also very careful in stating her views are 'conjecture' and not clinically popular (yet).
As a Vit D guinea pig, I have no news yet. The past three nights I guess I have been a lot more wiped-out tired and slept longer than I thought I would. Maybe that is a start -- a kind of deeper exhaustion and a slight shift from the 'wired' exhaustion. But (ever the cautious, pessimist Eyeore) that could also have to do with some work I was doing being over. I did recently have a breakthrough with the CPAP which was to go all night on my back with the mask... wow what a victory.... but it actually is, kinda, cause at a time one is trusting this is how they will get their best sleep some variety helps. I think it is quite possibly a better night's sleep, while on my back supposedly it would be the worst without CPAP therapy... yes ditching it is the goal... someday... one thing at a time, first order of bidness is to avoid deranged sleep psychosis...
Um.. it's not a bad LPR day here...! Haven't had really much of a problem, here are some thoughts...
It could be some improvement with slowly rising D levels (doubtful, but who knows!)
I keep doing this silly 'no wheat' and 'cut out the sugar' (well mostly) diet
I am gargling with an alkalizing mouthwash a lot
When I get that after meals ahem ahem, wet throat I pretty much ignore it until it is evident I must clear something or I will aspirate snot, so I gently huff into a napkin, yes vivid ain't it? (sorry)..... I think for me this is significant and I had made this note before, hacking, horking, wretching, and other kinds of tortured throat sound effects making are REALLY BAD for my throat when this is going on, and I bet yours too!
Brien good you've had a better day. Interesting re the no wheat and less sugars. I told EEW my throat has been feeling more sooothed and I'm thinking it's perhaps the active manuka honey. Not so good tonight but I've been talking a lot today and that does make it worse. Although feels dry and the 'crumb in throat' it still isn't feeling as irritated as it was. Tomorrow will be a new day.
Hi Brien, your LPR is different than mine. While my throat has white opaque film and was very red looking, I never had the hacking. I had severe neck/head/cheek/ear pain. It was unbearable. The acid vapor/gas/droplets were searing through my throat nerves. I also had loss of my voice. My voice was so weak and painful to talk. Sometimes a whisper would be too much to be able to do. I also felt like I had asthma. All that is gone now since I started the Vit (hormone) D. I'm sitting in the sun for 20 minutes a day. I take my timer with me on the front porch roll up my sleeves and pant legs and for the first time in 40 years I'm sitting in the sun. I think what your doing avoiding the wheat and things and gargling will help get you through the rough spots. When your spinchters return to normal and begin to open and close properly they will start closing off the stomach from your esophogus/throat. Try if possible to start your evening sleep by 9-10 pm. I'm keeping my fingers crossed for all of us that we get totally better. I've gone to sleep early two nights this week and I have no sensations of LPR today. Usually I have something mild but nothing today. And I'm eating very normal. It is such a relief not to have the LPR burn of the throat. I never thought I'd have my normal life back. I'm so grateful. I hope it works for others.
Thanks eew for the sun image... I was up in a tall building today with a big window facing east and just stood there for a long time... cmon, let's go sun..!
Wow, we're kind of a getting better club for ourselves here. C'mon Jude! I'm glad you too have had some relief lately.... "Crumb" in throat, yep, I understand... Hey you might be joining the D club... you may also be in need of reform, as one of my friends once put it, one of the 'dark ones' this is a reference to young people hanging out in coffee houses in the US Pacific Northwest, pale people who do not go out much (although there's not a lot of sun anyway)
I checked out that manuka honey... holy bees! It starts at $35 at my local supps and health foods place nearby. But in NZ I bet it is not so exotic and dear... it has been recommended though, I may splurge soon...
I appreciate our writings to each other, it's nice to know you can commiserate but we are all pretty pro-active and pragmatic and optimistic. Nice to have that support and place to check notes.
Another day waking up after 7 hrs, feeling foggy and wasted. If that doesn't sound very good understand I'm ecstatic! It's progress -- beats waking up after 4 hr feeling wired and tired! So far swallowing is ok, have yet to feel any 'post priandal snotty throat.' Good west coast morning and a VERY early next day good morning to NZ .... Brien
I'm so hoping our experiment works for you Brien...I know time can't move fast enough for you on this. Especially with the suffering of your throat. Keep gargling with light rinse of baking soda to help nutrilize the acid vapor/gas that's hitting your throat and chew a few sticks of baking soda gum. Cut out meat. Eat only little bit of fish and lots of lettice and mild fruit like bananas, peaches, blueberries, melon with no seeds and continue with sunning yourself and the D...I understand how hard it is. I think cutting out the sugar and wheat will buy you time to get to the next step of spinchter improvement. It sounds like the length of your sleep is improving. Is that correct? That is the first step in getting better. The D makes you sleep better then the body begins to improve all our body systems and our muscles all over the body improve, including our esophgeal muscles (LES/UES). Hang in there...we are with you. At one point last Nov 2010 my LPR was so severe I thought I'd be dead by Feb 2011. I'm still here and doing so much better. I never thought I'd have my quality of life back...there is hope. We have a chance to beat LPR if we can get our D hormone up to 65 and keep it there throughout the whole year. Vit D doesn't work without proper sleep...something I'm really working on with dedication.