Hi everybody,
I haven't been around for a while, mostly because I really have nothing new to say. I am struggling with many health issues, other than my MC, which has never come under control, not really. I don't have the terrible D of the earlier years, but I am far from in remission. As long as I can be functional I am thankful. I remain gluten, corn, and soy free; I can tolerate duck eggs in moderation; I am mostly dairy free apart from some raw milk cheese on occasion; I have eaten rice as in gluten free bread (TJ's); I found a soy and corn free chicken a couple of weeks ago at a farmer's market, and ate my first chicken since 2011. For a Jewish grandmother, that is something. It was the best chicken ever! And not just because it was the first in such a long time. It tasted like the chickens of my childhood, had almost NO fat, was smaller that supermarket chickens and had an incredible flavor. Also, the bones made wonderful broth. So, when the heat (which I do not tolerate) gets somewhat better, I will look for another one.
I have not been taking supplements because it was hard to find products that don't exacerbate my very, very bad GERD, treated with PPIs for years. I need to do something because I now have bad osteoporosis, and severe spinal damage in almost every vertebra. I need to find a good functional doctor near where I live because pain prevents me from driving too far. So I need recommendations from anyone in the west LA area. I live in MdR. Santa Monica would be fine!
I tried someone in El Segundo, but 100s of dollars later I was badly burned by him, and never went back. I would like to figure out if there is anything at all I can do.
I have tried just about everything for my GERD, AND for severe gastroparesis. I
am convinced that a failed fundoplication surgery for a hiatal hernia years back is not helping, but I can't get anyone to listen to me. SO what is new?
Anyone from this area - recommendations would be SO welcome!
Thanks very, very, much,
Lesley
Hi All!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Lesley,
Good to "see" you again, though I'm sorry that you needed to come back. I don't have much to suggest that you don't already know, but I would point out that if your vitamin D level is not already too high, relatively high doses of vitamin D (8,000–10,000 IU daily) have been shown to help control GERD.
Welcome back!
Tex
Good to "see" you again, though I'm sorry that you needed to come back. I don't have much to suggest that you don't already know, but I would point out that if your vitamin D level is not already too high, relatively high doses of vitamin D (8,000–10,000 IU daily) have been shown to help control GERD.
Welcome back!
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi, Lesley! I wondered how you are doing.
I am getting help from Dr. Gabrielle Hodson. She is not an MD, but has a PhD in nutrition, and run Hodson Custom Diets. http://www.hodsoncustomdiets.com/
I talk to her on the phone and through email and texts. She seems to really know a lot, she knows about MC, and is really big into eating "real food" and not taking pharmaceuticals.
Love,
Martha
I am getting help from Dr. Gabrielle Hodson. She is not an MD, but has a PhD in nutrition, and run Hodson Custom Diets. http://www.hodsoncustomdiets.com/
I talk to her on the phone and through email and texts. She seems to really know a lot, she knows about MC, and is really big into eating "real food" and not taking pharmaceuticals.
Love,
Martha
Martha
Hi Tex,
I am so glad to see you here, fully recovered I hope?
I have been dealing with multiple health problems. Taking PPIs for so long has caused serious back problems, needing something, not quite sure what. Hopefully an epidural soon so I get some relief.
My D levels are borderline low, but I am looking for one that doesn't cause GERD. I need to find someone to do tests and figure out what I am lacking exactly.
I wrote to my GE expressing my worries. Got this reply.
"If there is concern about GERD and the fundoplication we can do an upper endoscopy, esophagram and also a pH study to see if there is GERD or if the fundoplication has a problem."
Dr. Lewis
I finally got him to listen to me. Hopefully we can get this done soon. Meantime I am contemplating redoing enterolab to see if anything has changed.
First a functional doc, and, hopefully some enlightenment.
Truth be told there are so many problems I sort of gave up on MC!
Thanks Janie, I will look into it!
And Martha! I have often thought of you and wondered about little Abigail, probably not so little now.
Do you do blood tests with your nutritionist to see what is lacking? I know there is "stuff" but not what they are. I want to see if it can be figured out before I lose more bone.
I am so glad to see you here, fully recovered I hope?
I have been dealing with multiple health problems. Taking PPIs for so long has caused serious back problems, needing something, not quite sure what. Hopefully an epidural soon so I get some relief.
My D levels are borderline low, but I am looking for one that doesn't cause GERD. I need to find someone to do tests and figure out what I am lacking exactly.
I wrote to my GE expressing my worries. Got this reply.
"If there is concern about GERD and the fundoplication we can do an upper endoscopy, esophagram and also a pH study to see if there is GERD or if the fundoplication has a problem."
Dr. Lewis
I finally got him to listen to me. Hopefully we can get this done soon. Meantime I am contemplating redoing enterolab to see if anything has changed.
First a functional doc, and, hopefully some enlightenment.
Truth be told there are so many problems I sort of gave up on MC!
Thanks Janie, I will look into it!
And Martha! I have often thought of you and wondered about little Abigail, probably not so little now.
Do you do blood tests with your nutritionist to see what is lacking? I know there is "stuff" but not what they are. I want to see if it can be figured out before I lose more bone.
Lesley wrote:fully recovered I hope?
As fully recovered as I will ever get, I suppose — I'm still clumsy and weak, with poor balance, but it's good enough for an old codger who's retired.
Otherwise, I feel good, so I can't complain. That's why you continue to lose bone. Vitamin D and magnesium are essential for absorbing and utilizing the calcium in our diet. Vitamin D allows us to absorb it from our food into the bloodstream, and magnesium and insulin are used to transport it from the bloodstream into the cells where it can be used to build new bone. PPIs have been shown by research that they deplete magnesium so severely that a magnesium deficiency is virtually guaranteed after using PPIs for a year or more. Without magnesium we cannot utilize any of the calcium in our diet, no matter how much calcium supplement we take. The FDA even has a warning about this problem with PPIs:Lesley wrote:My D levels are borderline low
FDA Drug Safety Communication: Low magnesium levels can be associated with long-term use of Proton Pump Inhibitor drugs (PPIs)
Note that you can use H2 blockers to replace the PPIs, you just have to take them much more often. They will still deplete magnesium, but not nearly as much as PPIs, and they don't have all the other bad side effects of PPIs. Getting your vitamin D and magnesium levels up is the most important thing you can do to stop the bone loss. But increasing one without the other will not work — they both are vital to health (especially bone health). Corticosteroids also deplete magnesium, but not as severely as PPIs.
Good luck with your tests.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Are you getting treatment? Asking as an geriatric OT with expertise in strokes. I don't know if you ever said what sort of stroke it was, though it clearly hasn't hit the right frontal lobe because you are as sharp as ever. Right side stroke? Hands seem to be functioning judging by your typing, unless you are using dictation. Which you couldn't do if your speech centers were damaged. Leads me again to right side stroke?
I have tried to take mag internally, but it makes me sick. The oil caused me to break out in a rash, so I soak my feet in a LOT of epsom salts for 30 minutes to an hour ever day. I must try a few more Ds to see what I can tolerate. I stumble along until I try to add a supplement...those are what get to me the worst. I have a drawerful worth $100s that I have tried. That's one reason I want to see a functional physician to help me find supplements that I can tolerate. But I will get some and take it no matter what!
Thanks Tex!
I have tried to take mag internally, but it makes me sick. The oil caused me to break out in a rash, so I soak my feet in a LOT of epsom salts for 30 minutes to an hour ever day. I must try a few more Ds to see what I can tolerate. I stumble along until I try to add a supplement...those are what get to me the worst. I have a drawerful worth $100s that I have tried. That's one reason I want to see a functional physician to help me find supplements that I can tolerate. But I will get some and take it no matter what!
Thanks Tex!
No, I never received any treatment other than a couple of walks down the hall while I was in the hospital. You probably know more about the type of stroke I had than I do. The stroke affected the lower part of my brain, where memory, cognizance, balance, etc., are controlled. My right limbs were noticeably weaker than the left after a few days, but they were not paralyzed. One of the biggest effects seemed to be that it knocked my overall strength for a loop. I was as weak as a kitten, and I haven't been able to regain much of what I lost.
When I was discharged, I left the walker in the room and forced myself to walk out of the hospital by leaning on walls and rails whenever I found it necessary. I figured that if I had it easy, I'd never learn to do everything myself. It was rough for a couple of weeks, stumbling around and falling against everything (I had a lot of bruises, especially since I was already taking Plavix), but I finally got tired of falling and I slowly learned how to balance myself in most situations.
The worst part was that my hands and feet forgot how to do everything. Amazingly, my brain seems to be able to remember most information and past events and how to do everything, but my limbs couldn't do anything automatically. I had to relearn how to eat, comb my hair, shave, walk, drive, use a keyboard and mouse, etc — all the things we learn as we grow up. After a few weeks I was able to use a keyboard and mouse well enough to get by, but typing took forever because I made so many mistakes. I'm still improving, but it's a good thing that I'm old and retired because I'll never be able to do much physical work again. I can drive to nearby small towns for grocery shopping, but I can't think fast enough to feel comfortable driving at speeds over about 45 mph, so I try to stay away from the hiways. I'm dumber than I used to be, but fortunately I used to fairly sharp, so I'm still a little bit smarter than the average doorknob.
If you can just find a way to get away from those PPIs, it will help your magnesium absorption rate tremendously.
Tex
When I was discharged, I left the walker in the room and forced myself to walk out of the hospital by leaning on walls and rails whenever I found it necessary. I figured that if I had it easy, I'd never learn to do everything myself. It was rough for a couple of weeks, stumbling around and falling against everything (I had a lot of bruises, especially since I was already taking Plavix), but I finally got tired of falling and I slowly learned how to balance myself in most situations.
The worst part was that my hands and feet forgot how to do everything. Amazingly, my brain seems to be able to remember most information and past events and how to do everything, but my limbs couldn't do anything automatically. I had to relearn how to eat, comb my hair, shave, walk, drive, use a keyboard and mouse, etc — all the things we learn as we grow up. After a few weeks I was able to use a keyboard and mouse well enough to get by, but typing took forever because I made so many mistakes. I'm still improving, but it's a good thing that I'm old and retired because I'll never be able to do much physical work again. I can drive to nearby small towns for grocery shopping, but I can't think fast enough to feel comfortable driving at speeds over about 45 mph, so I try to stay away from the hiways. I'm dumber than I used to be, but fortunately I used to fairly sharp, so I'm still a little bit smarter than the average doorknob.
If you can just find a way to get away from those PPIs, it will help your magnesium absorption rate tremendously.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Gabes-Apg
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- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Lesley,
hopefully now things are more settled with your living arrangements etc as I think a contributor to your ongoing digestion issues was /is stress.
With settled living situation and not travelling internationally sticking with safe eating plan this will help your body heal a bit.
Healing hugs xo
hopefully now things are more settled with your living arrangements etc as I think a contributor to your ongoing digestion issues was /is stress.
With settled living situation and not travelling internationally sticking with safe eating plan this will help your body heal a bit.
Healing hugs xo
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I am settled in my place. I like it a lot, though there are stairs to get in and out, which makes it a bit difficult.
There has been a terrible heat wave lately, which has made Licorice and I both pretty sick.
I am going to Israel again in December, but my daughter is gifting me a voucher for an upgrade - she gets them because she travels all over the world. So the trip should be WAY more comfortable. Licorice and I will be able to lie down to sleep.
Tex, I do know more or less where you had your stroke. I am blown away by your persistence and tenacity to do all this without getting the type of help I am trained to give. I am also blown away that you did not get the help. Under Medicare you should have. Makes me MADDER than hell because with that sort of patient I would have been able to help to retrieve more, and faster. Any well trained professional should be able to.
It's been a very busy day, a hard one for me in the heat. Hopefully I will find supplements that will help me get over the bone loss. I am going to need surgery because I have already had bone collapse.
Thank you guys, for your help.
There has been a terrible heat wave lately, which has made Licorice and I both pretty sick.
I am going to Israel again in December, but my daughter is gifting me a voucher for an upgrade - she gets them because she travels all over the world. So the trip should be WAY more comfortable. Licorice and I will be able to lie down to sleep.
Tex, I do know more or less where you had your stroke. I am blown away by your persistence and tenacity to do all this without getting the type of help I am trained to give. I am also blown away that you did not get the help. Under Medicare you should have. Makes me MADDER than hell because with that sort of patient I would have been able to help to retrieve more, and faster. Any well trained professional should be able to.
It's been a very busy day, a hard one for me in the heat. Hopefully I will find supplements that will help me get over the bone loss. I am going to need surgery because I have already had bone collapse.
Thank you guys, for your help.
I wondered why no one offered/mentioned any help. I guess they thought I was too old to be worth working on.
I hope that you can find those supplements.
Tex
I hope that you can find those supplements.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex, under Medicare you are entitled to help. How long were you in hospital? The first 20 days are always free WITH help after a 3 day qualifying hospital stay, the next 80 are 80% covered and 20% your responsibility in a rehab facility, unless you have supplemental which covers the 20%. After that Part B takes over the 80%, and the 20% continues to be covered by you of by your supplemental until a therapist declares you have reached your max functional level. Which you clearly haven't yet. You need to check with your provider. There is something SO wrong with this! Unless TX is different, but somehow I don't think so.
Whoa! I took a magnesium tablet last night, and had the worst night in YEARS! Back to watery, mucousy D with bad, bad cramps. I can't think of anything else I changed yesterday. So I have to find another method of delivery, and wait to try D3 until things settle down again. I always have a combo of C + mud (when I force it to get through the C), but I haven't had this in YEARS! I will add more Epsom salts to my soak, and do it for longer. I will have to try oil again. See if it causes a rash again.
Whoa! I took a magnesium tablet last night, and had the worst night in YEARS! Back to watery, mucousy D with bad, bad cramps. I can't think of anything else I changed yesterday. So I have to find another method of delivery, and wait to try D3 until things settle down again. I always have a combo of C + mud (when I force it to get through the C), but I haven't had this in YEARS! I will add more Epsom salts to my soak, and do it for longer. I will have to try oil again. See if it causes a rash again.
I may have been a few hours short of 72 hours.
Bummer, on the magnesium tablet. What kind did you take? I agree, you certainly don't need to repeat that experience.
Tex
Bummer, on the magnesium tablet. What kind did you take? I agree, you certainly don't need to repeat that experience.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Lesley,
Say ReMag Magnesium Lotion works really really well, and does not cause rash, it soaks right in and I have used it on my face and temples when I have a tension head ache. After I apply it and let it soak in I will apply a mild moisture lotion I use a TOMS brand. A teaspoon will deliver approx 200 mg of magnesium...if you are that sensitive to Magnesium that would be a route I'd go along with the Epsom Salt regimen.
Say ReMag Magnesium Lotion works really really well, and does not cause rash, it soaks right in and I have used it on my face and temples when I have a tension head ache. After I apply it and let it soak in I will apply a mild moisture lotion I use a TOMS brand. A teaspoon will deliver approx 200 mg of magnesium...if you are that sensitive to Magnesium that would be a route I'd go along with the Epsom Salt regimen.
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Erica - thanks. ReMag internally was horrible for me. Thanks for the recco. I will try the lotion. I do the epsom salts every day.
No Tex, I don't want this route again. Back to lamb, potatoes, bananas and coconut for a while.
They always try to do that! Let you out before the 3 day cut off! I hate it. Had you had PT or OT in the hospital, one worth their salt would have fought for you. I would NEVER have let you go in that state. I know how to write the paperwork so they could be sued if they did it.
No Tex, I don't want this route again. Back to lamb, potatoes, bananas and coconut for a while.
They always try to do that! Let you out before the 3 day cut off! I hate it. Had you had PT or OT in the hospital, one worth their salt would have fought for you. I would NEVER have let you go in that state. I know how to write the paperwork so they could be sued if they did it.