URGENT, I need a doctor!
Moderators: Rosie, JFR, Dee, xet, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh, mbeezie
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lighthouse
- Posts: 17
- Joined: Tue Oct 28, 2014 12:20 pm
- Location: Rochester NY
URGENT, I need a doctor!
Hi, My name is Bernice and I live in Rochester, NY. I was diagnosed with colaginitis colitis about 18 months ago. My main problem is finding a doctor who knows more than I do about this condition. I’ve done some reading, but not enough to help myself function effectively. Every avenue I pursue is a dead-end. I am extremely discouraged. I can’t do the food sensitivity testing because NY doesn’t allow it. None of the doctors on this web site are near enough to visit. They don’t even do a phone consultation. I don’t know what to do next. I know there must be a way to function, but I just haven’t found it yet. Can you help?
Hello Bernice,
Welcome to our Internet family. Yes, NY has a somewhat patient-unfriendly health care system. If you are interested in controlling your symptoms by diet changes rather than medications, there are 3 options that members here have used successfully:
1. Do an elimination diet and after you are in stable remission, test foods back into your diet by trial and error.
2. If you have a friend or relative in an adjoining state who is willing to order some EnteroLab tests for you, you can have them order the test kit for you and then drive there to pick it up, collect a sample with the kit and then ship the sample back to the lab (from outside NY).
3. Perhaps another member of this discussion forum who lives in an adjacent state would be willing to order the test for you.
If you want to try an elimination diet, we can help you to select foods that should be safe to use in a simple, bland, recovery diet. Have you downloaded or studied the Diet Guidelines offered on the Microscopic Colitis Foundation website? Here's a link to the Downloads page:
http://www.microscopiccolitisfoundation ... loads.html
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. Yes, NY has a somewhat patient-unfriendly health care system. If you are interested in controlling your symptoms by diet changes rather than medications, there are 3 options that members here have used successfully:
1. Do an elimination diet and after you are in stable remission, test foods back into your diet by trial and error.
2. If you have a friend or relative in an adjoining state who is willing to order some EnteroLab tests for you, you can have them order the test kit for you and then drive there to pick it up, collect a sample with the kit and then ship the sample back to the lab (from outside NY).
3. Perhaps another member of this discussion forum who lives in an adjacent state would be willing to order the test for you.
If you want to try an elimination diet, we can help you to select foods that should be safe to use in a simple, bland, recovery diet. Have you downloaded or studied the Diet Guidelines offered on the Microscopic Colitis Foundation website? Here's a link to the Downloads page:
http://www.microscopiccolitisfoundation ... loads.html
Again, welcome aboard, and please feel free to ask anything.
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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Bernice - I live in Vermont. I have helped a number of people from NY get the Enterolab testing done. I would be happy to do it for you as well. Enterolab will send the test to me (but under your name with your information) and I will send it to you. When you're ready to send it back you mail it to me and I mail it back to them. It's worked every time. Let me know.
Jean
Jean
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lighthouse
- Posts: 17
- Joined: Tue Oct 28, 2014 12:20 pm
- Location: Rochester NY
More Questions
Good Evening, Thank you for your responses. I already am feeling a small amount of relief to find out people are actually out there and I’m not alone. Of course, I have many questions. First, for Tex, is your book available in an electronic or audio form? I am blind, so a printed copy would not be very practical. I am leaning towards doing the food sensitivity testing, since reading labels and multiple trips to the grocery store are somewhat impractical for me. If Jean could give me some more specifics on using Enterolab, I would appreciate it. Would I call them and give her address as my address? What about the billing address associated with my credit card, it is obviously a NY address. I would think that the timing of the samples are crucial, how does that work? Does the lab send printed results, or can they send them electronically? Looking forward to our next communication. Bernice.
Bernice,
Unfortunately there is no audio version of the book but it is available in many digital formats, so that it can be read on virtually any digital reader. I will be happy to send you a digital version attached to an email, free of charge. I will need to know which digital reading device (or devices) you prefer. Or, I can send you a PDF or RTF version if you would rather use your computer to synthesize audio. All of the digital versions (and the PDF version) have live links to several hundred references. Hopefully your electronic devices or your computer have a way to open those live links if you should want to access the details of any of the research that's cited in the book.
I'm sure that Jean has a way to handle the details of dealing with EnteroLab, so I won't even attempt to answer those questions. I can tell you that the sample has to be frozen after properly sealing it in their container, and shipped frozen only on Monday through Wednesday so that they can get all samples processed by closing time on Friday. But if you freeze it and ship it to Jean, she can send it to the lab on a designated day.
The lab will send you an email after your results are available, with log in information so that you can view your results electronically in their database. If you need help with accessing your results, I'm sure that the lab would be more than happy to assist you over the phone. Or if you prefer, Jean would probably be willing to retrieve your results for you, or help you in any way you wish. And if you need help with interpreting the test results, we can help you with that.
Anytime you need help or suggestions with anything, please don't hesitate to ask. If you will tell me which type of digital files will work best for you, I will send them to you promptly so that you can begin reading the book.
Tex
Unfortunately there is no audio version of the book but it is available in many digital formats, so that it can be read on virtually any digital reader. I will be happy to send you a digital version attached to an email, free of charge. I will need to know which digital reading device (or devices) you prefer. Or, I can send you a PDF or RTF version if you would rather use your computer to synthesize audio. All of the digital versions (and the PDF version) have live links to several hundred references. Hopefully your electronic devices or your computer have a way to open those live links if you should want to access the details of any of the research that's cited in the book.
I'm sure that Jean has a way to handle the details of dealing with EnteroLab, so I won't even attempt to answer those questions. I can tell you that the sample has to be frozen after properly sealing it in their container, and shipped frozen only on Monday through Wednesday so that they can get all samples processed by closing time on Friday. But if you freeze it and ship it to Jean, she can send it to the lab on a designated day.
The lab will send you an email after your results are available, with log in information so that you can view your results electronically in their database. If you need help with accessing your results, I'm sure that the lab would be more than happy to assist you over the phone. Or if you prefer, Jean would probably be willing to retrieve your results for you, or help you in any way you wish. And if you need help with interpreting the test results, we can help you with that.
Anytime you need help or suggestions with anything, please don't hesitate to ask. If you will tell me which type of digital files will work best for you, I will send them to you promptly so that you can begin reading the book.
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.
Bernice,
The way I have done it in the past is that you give me the information I need and I fill out the order form using your name and date of birth and email address but I use my Vermont address and telephone number. In order to pay for the test you will have to send me the money either by check or through pay pal. I understand that this can feel risky and all I can tell you is that I have done this 3 times for other people without a hitch. I've been a member here for 4 years and I suspect that Tex and others will vouch for me. As Tex says, if you freeze your sample and send it to me I will mail it back to Enterolab on the day I receive it. Enterolab will have your email address so the results will be sent directly to you electronically. You will also have a username and password which I can make up for you when I fill out the form so that you can log onto the site. Any questions you have please ask and anything I can do to reassure you let me know.
Jean
The way I have done it in the past is that you give me the information I need and I fill out the order form using your name and date of birth and email address but I use my Vermont address and telephone number. In order to pay for the test you will have to send me the money either by check or through pay pal. I understand that this can feel risky and all I can tell you is that I have done this 3 times for other people without a hitch. I've been a member here for 4 years and I suspect that Tex and others will vouch for me. As Tex says, if you freeze your sample and send it to me I will mail it back to Enterolab on the day I receive it. Enterolab will have your email address so the results will be sent directly to you electronically. You will also have a username and password which I can make up for you when I fill out the form so that you can log onto the site. Any questions you have please ask and anything I can do to reassure you let me know.
Jean
Bernice,
Yes, I would trust Jean to do everything that she says she will do. We are like family on this discussion board.
Tex
Yes, I would trust Jean to do everything that she says she will do. We are like family on this discussion board.
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
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Bernice
welcome to the group - and sympathies that you had to find us and that finding medical support has been a challenge.
We are like a family on this board and you can trust Jean with helping with doing the enterolab testing etc.
Regards
Gabes
welcome to the group - and sympathies that you had to find us and that finding medical support has been a challenge.
We are like a family on this board and you can trust Jean with helping with doing the enterolab testing etc.
Regards
Gabes
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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lighthouse
- Posts: 17
- Joined: Tue Oct 28, 2014 12:20 pm
- Location: Rochester NY