I have decided in my best interest to let Dr. Fine go
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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dolson
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Gabes
Gabes, thanks for the advice. I am trying to accept my MC and live with it and not let it control my life. The Cholestryamine medication has done wonders. It's as if I no longer have MC, but I do. I'm trying to get out more and experience life. Again...Gabes, you have helped me so much. You are one smart cookie. You get an "A" in my book. If I can help you in any way, please holler. Warm Regards, Dorothy
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rcchild@gpcom.net
- Little Blue Penguin
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- Location: Nebraska
What a wonderful, uplifting thread! I had read it in the past, but it didn't touch me as significantly. Today was just the day I needed to hear everyone's words of wisdom.
I started Sandoz cholestyramine with sucrose this morning. Just took 1/4 scoop to start. The additives still look scary, but you have to try something. I am excited to be trying this after reading these posts and others I've found. It may not be the answer, but at least I will know I tried.
Thanks to everyone for taking the time to compose such wise, kind, caring posts. And Dorothy I am so glad you are finding cholestyramine to be of help.
Carol C
I started Sandoz cholestyramine with sucrose this morning. Just took 1/4 scoop to start. The additives still look scary, but you have to try something. I am excited to be trying this after reading these posts and others I've found. It may not be the answer, but at least I will know I tried.
Thanks to everyone for taking the time to compose such wise, kind, caring posts. And Dorothy I am so glad you are finding cholestyramine to be of help.
Carol C
Sandbox cholestyramine
Not to scare anyone, but I take 8 packets a day and life is back to normal for me! I have fiddled with the dosage for years and that’s what it takes for me people. Don’t give up....increase the amount you are taking and see if that helps....
Laine
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
I was diagnosed by biopsy in 2011. I did Enterolab twice, 5 years apart. The first panel showed intolerance to gluten , dairy and soy...but the dairy and soy were like 11. 5 years later I did the other panel which showed NO ZERO OR ONES, everything was a two and rice was a three!
I ate like a Plains Indian for a few years, felt awful, missed two and a half months of work in 2017, lost 23#.. Did everything, tried everything and was tested for everything including a neuroendocrine tumor!
I started cholestyramine in Sept of 2016 and every time I stopped it thinking it wasn’t helping, life went from bad to worse. Apparently I’m a little slow but I have thru trial and error decided I needed to use Sandoz brand and 8 packets a day..I know that’s a shopping cart full people but my PCP here in Tempe doesn’t flinch at that. Life also got much better when I started using betaine HCl with every meal. Read about it. I took 3 to 5 of those capsules for awhile and noticed things getting better still...also digestive enzymes. Now I don’t need the enzymes and really only take 1 betaine HCL with heavy protein meals.
And, it’s taken awhile....but my bm now looks pretty normal most of the time . And what I mean by that is that it looks pretty homogeneous...not able to see what I ate!
I eat everything now . Two years ago right now I wasn’t sure I would be around much longer.. and my GI doc just really wanted to keep doing more Enterocort, TCAs, blah, blah blah. I fixed myself with the help of NP at the PCPs office initially, this board, reading on the internet and deciding that diet alone wasn’t healing me.
I take a BOAT LOAD of cholestyramine ...bless those people that are solid with one packet every other day! I am jealous of them. I’m glad that Sandoz is a generic so my copay for 3 months is $10...who hoo
Don’t give up people. I post this to encourage others..
Laine
I ate like a Plains Indian for a few years, felt awful, missed two and a half months of work in 2017, lost 23#.. Did everything, tried everything and was tested for everything including a neuroendocrine tumor!
I started cholestyramine in Sept of 2016 and every time I stopped it thinking it wasn’t helping, life went from bad to worse. Apparently I’m a little slow but I have thru trial and error decided I needed to use Sandoz brand and 8 packets a day..I know that’s a shopping cart full people but my PCP here in Tempe doesn’t flinch at that. Life also got much better when I started using betaine HCl with every meal. Read about it. I took 3 to 5 of those capsules for awhile and noticed things getting better still...also digestive enzymes. Now I don’t need the enzymes and really only take 1 betaine HCL with heavy protein meals.
And, it’s taken awhile....but my bm now looks pretty normal most of the time . And what I mean by that is that it looks pretty homogeneous...not able to see what I ate!
I eat everything now . Two years ago right now I wasn’t sure I would be around much longer.. and my GI doc just really wanted to keep doing more Enterocort, TCAs, blah, blah blah. I fixed myself with the help of NP at the PCPs office initially, this board, reading on the internet and deciding that diet alone wasn’t healing me.
I take a BOAT LOAD of cholestyramine ...bless those people that are solid with one packet every other day! I am jealous of them. I’m glad that Sandoz is a generic so my copay for 3 months is $10...who hoo
Don’t give up people. I post this to encourage others..
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
HockeyMom
Thank you sooo much!! I really want to get better, I am very carful with my diet, but I am 37 yo and my hsband and I love travelling with frineds, I feel so depressed whe I saw my Enterlob Results SOY MILK GLUTEN AND EGGS. Reading you give me hope. After coming off accutane my health is quite bad, almost bald, no weight gain, I am on Rice, millet, and turkey by now
Thank you sooo much!! I really want to get better, I am very carful with my diet, but I am 37 yo and my hsband and I love travelling with frineds, I feel so depressed whe I saw my Enterlob Results SOY MILK GLUTEN AND EGGS. Reading you give me hope. After coming off accutane my health is quite bad, almost bald, no weight gain, I am on Rice, millet, and turkey by now
Ingrid
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rcchild@gpcom.net
- Little Blue Penguin
- Posts: 44
- Joined: Sun May 26, 2019 2:09 pm
- Location: Nebraska
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rcchild@gpcom.net
- Little Blue Penguin
- Posts: 44
- Joined: Sun May 26, 2019 2:09 pm
- Location: Nebraska
-
rcchild@gpcom.net
- Little Blue Penguin
- Posts: 44
- Joined: Sun May 26, 2019 2:09 pm
- Location: Nebraska
Laine,
I sure do appreciate your post. I won't be so tempted to give up the cholestyramine when the results aren't perfect now. I'll just keep working on it for awhile.
Even though I've had D for 3 years, I had been feeling pretty well for several months in 2019. Then starting in August my health felt like it is was going backwards. Maybe I'm just suffering various vitamin deficiencies or maybe I've become intolerant to rice, but just don't feel well and have no energy.
You give me hope it will get better. Thank you.
Carol C
I sure do appreciate your post. I won't be so tempted to give up the cholestyramine when the results aren't perfect now. I'll just keep working on it for awhile.
Even though I've had D for 3 years, I had been feeling pretty well for several months in 2019. Then starting in August my health felt like it is was going backwards. Maybe I'm just suffering various vitamin deficiencies or maybe I've become intolerant to rice, but just don't feel well and have no energy.
You give me hope it will get better. Thank you.
Carol C
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dolson
- Gentoo Penguin
- Posts: 310
- Joined: Fri Mar 30, 2018 12:35 pm
- Location: Hilton Head, SC
- Contact:
Thanks Gabes
I have learned to turn off the TV, especially now with all this impeachment mess. TV use to be enjoyable, but now it's all infighting and horrible news. Never thought I would see this stuff happening. I have to get away from it.
Church is the answer for me. I feel calm, but at times the Devil tries to pull me away. God is everything for me. I give it to God and he's the answer. Sorry for getting on my soap box.
I just want to say that I like Dr. Fine. My enterolab results were pretty much spot on and has helped tremendously. That was a mistake what I said about Dr. Fine. He is a fine man and doctor and I do need him. Here I go again, apologizing.
I really think this brain fog does a number on us. It seems to come and go. At times my cognitive abilities are fine. I can write, spell and make sense, but the brain fog messes up my mind. I have to ask somebody how to spell a simple word. What does that word mean and I put Kleenexes and Ben Gay for spasms in the fridge. I do stupid stuff when the brain fog comes on, so please forgive me if I say crazy things.The brain fog makes you wonder if you're suffering from dementia. I want my brain. How do y'all deal with brain fog? Dorothy
Church is the answer for me. I feel calm, but at times the Devil tries to pull me away. God is everything for me. I give it to God and he's the answer. Sorry for getting on my soap box.
I just want to say that I like Dr. Fine. My enterolab results were pretty much spot on and has helped tremendously. That was a mistake what I said about Dr. Fine. He is a fine man and doctor and I do need him. Here I go again, apologizing.
I really think this brain fog does a number on us. It seems to come and go. At times my cognitive abilities are fine. I can write, spell and make sense, but the brain fog messes up my mind. I have to ask somebody how to spell a simple word. What does that word mean and I put Kleenexes and Ben Gay for spasms in the fridge. I do stupid stuff when the brain fog comes on, so please forgive me if I say crazy things.The brain fog makes you wonder if you're suffering from dementia. I want my brain. How do y'all deal with brain fog? Dorothy
It's really nice that people are so supportive here. I hope you can find some answers, dolson.
I’ve done the tests, and do my best to eliminate problem foods. A vaguely paleo-ish diet seems to help, except that they love coconut and eggs and I can't tolerate them for the most part. The nausea and random pain and tiredness has always been hit and miss. I'm trying to get better about feeling left out at potlucks and eating out--it's my issue and no one's fault that humans like to share food with each other. Stool and bloat wise I had been doing pretty well until June when I was in a car accident and the stress and pain and mental distress afterward blew everything up. Since then it’s been off and on crap (no pun intended). Currently I think it’s menstruation throwing a wrench in. Generally figuring out go to breakfast and lunch and snack (that I can take to work) options has been really hard. I could really use some good options for electrolytes and comforting/soothing drinks. Magnesium and potassium seem to help with cramping, and I finally found a D3 that doesn't give me a rash.
I’ve given up on two GI doctors, one for insisting medication was the only answer, and the other for telling me that her other patients just changed their diets, I just needed to figure it out, and I was wasting her time when she could be helping cancer patients. I’m debating going back to the naturopath that’s supposed to be a gut expert. It feels like doctors can’t do anything; I just need to figure out food (it would really help if I liked to cook) and not be such a worrywart. I need to get back to meditating; I had been doing it regularly but after awhile it felt like I was just going through the motions so I've been less frequent with it. Social media and politics have kind of ruined me also, so I'm very careful with how I use/consume either one.
Anyway, all the best to all of you. Just a day at a time, we'll get there.
I’ve done the tests, and do my best to eliminate problem foods. A vaguely paleo-ish diet seems to help, except that they love coconut and eggs and I can't tolerate them for the most part. The nausea and random pain and tiredness has always been hit and miss. I'm trying to get better about feeling left out at potlucks and eating out--it's my issue and no one's fault that humans like to share food with each other. Stool and bloat wise I had been doing pretty well until June when I was in a car accident and the stress and pain and mental distress afterward blew everything up. Since then it’s been off and on crap (no pun intended). Currently I think it’s menstruation throwing a wrench in. Generally figuring out go to breakfast and lunch and snack (that I can take to work) options has been really hard. I could really use some good options for electrolytes and comforting/soothing drinks. Magnesium and potassium seem to help with cramping, and I finally found a D3 that doesn't give me a rash.
I’ve given up on two GI doctors, one for insisting medication was the only answer, and the other for telling me that her other patients just changed their diets, I just needed to figure it out, and I was wasting her time when she could be helping cancer patients. I’m debating going back to the naturopath that’s supposed to be a gut expert. It feels like doctors can’t do anything; I just need to figure out food (it would really help if I liked to cook) and not be such a worrywart. I need to get back to meditating; I had been doing it regularly but after awhile it felt like I was just going through the motions so I've been less frequent with it. Social media and politics have kind of ruined me also, so I'm very careful with how I use/consume either one.
Anyway, all the best to all of you. Just a day at a time, we'll get there.
Hi Dorothy,
Brain fog come and goes for me. The more upset my gut is, the more scrambled and slowed my thinking is. The more my health improves the more obvious it is when I get brain fog. No doubt that the gut- brain connection is real. So anything that will calm my gut will help my thinking. If I've been glutened, it's going to take 3-4 days. If I have a temporary bout of colitis then I make sure I"m hydrated, take Tylenol for spasms, and if I have to I take Imodium if I have cramping and just need to end that colitis episode.
Thanks to the weekly acupuncture I've been getting from an excellent practitioner, my motility has found it's rhythm again. I see a functional med doc for vitamin deficiencies and for methylation issues (I have the MTHFR 1298 gene mutation). All these things have made a huge difference in how I feel. I rarely have brain fog now because my digestive health is much more stable. What I know more than anything else is that it pays to keep working and fine tuning my health issues and I'm sure that's true for all of us.
AKLynx, I highly recommend seeing a functional med doc or integrative med doc. I was unaware that I had the MTHFR gene mutation until I started seeing one 2 years ago. Given my symptoms and family history of autoimmune diseases I should have guessed but it's one of the first tests he did. Working on methylation and reducing/eliminating toxins has made a big difference for me. We also discovered that I don't process fats and being able to address that has been a huge help to my digestion. And my health insurance pays for my appointments. The advice on this board got me into remission. Then I decided to go the next step and I'm really glad I did.
Wishing you (both) the best,
Carol
Brain fog come and goes for me. The more upset my gut is, the more scrambled and slowed my thinking is. The more my health improves the more obvious it is when I get brain fog. No doubt that the gut- brain connection is real. So anything that will calm my gut will help my thinking. If I've been glutened, it's going to take 3-4 days. If I have a temporary bout of colitis then I make sure I"m hydrated, take Tylenol for spasms, and if I have to I take Imodium if I have cramping and just need to end that colitis episode.
Thanks to the weekly acupuncture I've been getting from an excellent practitioner, my motility has found it's rhythm again. I see a functional med doc for vitamin deficiencies and for methylation issues (I have the MTHFR 1298 gene mutation). All these things have made a huge difference in how I feel. I rarely have brain fog now because my digestive health is much more stable. What I know more than anything else is that it pays to keep working and fine tuning my health issues and I'm sure that's true for all of us.
AKLynx, I highly recommend seeing a functional med doc or integrative med doc. I was unaware that I had the MTHFR gene mutation until I started seeing one 2 years ago. Given my symptoms and family history of autoimmune diseases I should have guessed but it's one of the first tests he did. Working on methylation and reducing/eliminating toxins has made a big difference for me. We also discovered that I don't process fats and being able to address that has been a huge help to my digestion. And my health insurance pays for my appointments. The advice on this board got me into remission. Then I decided to go the next step and I'm really glad I did.
Wishing you (both) the best,
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Thanks carolm, it's great that you've found a lot of what you need. Interestingly the woman I see for depression medication is functional or integrative, I'm not sure which. In addition to the depression medication, she also has me taking a B complex, and a separate methylated folate. She had me try it on a whim to see if it would help, and we intended to do the test to see if it's necessary but never did. I should probably check in with her on that. :) Unfortunately she's not great with gut issues, though there's another person I might try. I think I need to get through all the crap left over from the accident first, though. With that on top of work I don't have a lot of energy for much else.