Go to Home Page
Main Message Board | Treatment Discussions | Polls | MC FAQs | Recipes | Information Sites | Medication Info | Diet Info | Jokes | Photo Gallery
  Username:    Password:      Remember me       
MICROSCOPIC COLITIS SUPPORT Forum Index

You can get your life back
MICROSCOPIC COLITIS SUPPORT
Discussion and Support Forum for Collagenous Colitis, Lymphocytic Colitis, Microscopic Colitis, Mastocytic Enterocolitis, and Related Issues

Visit the Microscopic Colitis Foundation Website
 

The only comprehensive book ever written about Microscopic Colitis
 FAQFAQ  RulesRules   SearchSearch   MemberlistMemberlist   UsergroupsUsergroups  ChatChat   RegisterRegister 
 ProfileProfile   Log in to check your private messagesLog in to check your private messages   Log inLog in 
 World Time Clock--Time ZonesPotty People T-ShirtsPrivacy Policy
Google
SearchSearch The Archives of This Discussion Board
Need New Pain Medication
Goto page Previous  1, 2, 3  Next
 
Post new topic   Reply to topic       MICROSCOPIC COLITIS SUPPORT Forum Index -> Frequently Asked Questions about CC, LC, and MC
 View previous topic :: View next topic  
Author Message
JLH
King Penguin
King Penguin


Joined: 17 Jun 2008

Posts: 4272
User's local time:
2017 Jun 26 - 1:07 AM


Food Intolerances : gluten, casein, soy, eggs, yeast; 3+ rice, chicken, corn, almond; 2+ tuna. oat, beef, cashew; 1+ white potato, walnut

PostPosted: Sat Aug 02, 2014 11:48 am    Post subject: Reply with quote

Sydney, check out Low Dose Naltrexone (LDN).

First thing I Googled not necessarily the best. http://www.nationalmssociety.org/Treating-MS/Co...w-Dose-Naltrexone
_________________
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

Joan
Back to top
JLH
King Penguin
King Penguin


Joined: 17 Jun 2008

Posts: 4272
User's local time:
2017 Jun 26 - 1:07 AM


Food Intolerances : gluten, casein, soy, eggs, yeast; 3+ rice, chicken, corn, almond; 2+ tuna. oat, beef, cashew; 1+ white potato, walnut

PostPosted: Sat Aug 02, 2014 11:55 am    Post subject: Reply with quote

http://www.perskyfarms.com/phpBB2/viewtopic.php...highlight=francie
_________________
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

Joan
Back to top
tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30073
User's local time:
2017 Jun 26 - 1:07 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Sat Aug 02, 2014 12:00 pm    Post subject: Reply with quote

Sydney wrote:
Mayo Clinic says no Ibuprofen, no Acetaminophen with LC.


Jane wrote:
I have not been in remission for years so I haven't noticed an effect of taking the ibuprofen - I just always have watery D.


Jane wrote:
Is it problematic if you take it all the time?


Sydney and Jane,

Acetaminophen (Tylenol) does not trigger MC symptoms, to the best of available knowledge, but the reason why I agreed with you Sydney, that it is not safe, is because of what Marliss pointed out. It's hard on the liver, and high doses (especially in combination with alcohol) can cause serious kidney damage.

That said, back when I was recovering, I didn't know any better (most of this information has come to light since then) and I took 2 max strength Tylenol (540 mg each, as I recall) every 4 hours (until I reached the labeled 24-hour limit) on most days when my body was wracked with pain. My symptoms were marked not only by gut-wrenching GI issues, but my joints, and my neck especially were often so stiff and sore that I couldn't work, couldn't sleep, couldn't think straight, etc. Headaches and severe migraines were a regular problem, and the Tylenol allowed me to function on at least a mediocre level.

Apparently today my liver and kidneys are none the worse for wear, but knowing what I know now about it, the decision to take it wouldn't be a no-brainer the way it was back then. I might still use it, but I would be more cautions about how much and how often I took it. I haven't taken any Tylenol in probably at least 7 or 8 years, because after I removed all (and I do mean all) of the problem foods from my diet, all the stiffness, headaches, migraines, aches, and pains went away, and never returned.

Tex
_________________
cowboy

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.
Back to top
SweetSydney
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 11 Jan 2013

Posts: 104
User's local time:
2017 Jun 26 - 1:07 AM



Location: United States

PostPosted: Sat Aug 02, 2014 12:01 pm    Post subject: Reply with quote

JLH wrote:
Sydney, check out Low Dose Naltrexone (LDN).

First thing I Googled not necessarily the best. http://www.nationalmssociety.org/Treating-MS/Co...w-Dose-Naltrexone</td>


I have a friend, whose husband also has MS-he takes LDN-has had some improvement in pain. But, we are both in the advanced stages of MS.

Thanks, Joan.

Sydney
_________________
Sydney
Lymphocytic Colitis-12/17/2012
MS
Back to top
SweetSydney
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 11 Jan 2013

Posts: 104
User's local time:
2017 Jun 26 - 1:07 AM



Location: United States

PostPosted: Sat Aug 02, 2014 12:04 pm    Post subject: Reply with quote

tex wrote:
Sydney wrote:
Mayo Clinic says no Ibuprofen, no Acetaminophen with LC.


Jane wrote:
I have not been in remission for years so I haven't noticed an effect of taking the ibuprofen - I just always have watery D.


Jane wrote:
Is it problematic if you take it all the time?


Sydney and Jane,

Acetaminophen (Tylenol) does not trigger MC symptoms, to the best of available knowledge, but the reason why I agreed with you Sydney, that it is not safe, is because of what Marliss pointed out. It's hard on the liver, and high doses (especially in combination with alcohol) can cause serious kidney damage.

That said, back when I was recovering, I didn't know any better (most of this information has come to light since then) and I took 2 max strength Tylenol every 4 hours (until I reached the labeled 24-hour limit) on most days when my body was wracked with pain. My symptoms were marked not only by gut-wrenching GI issues, but my joints, and my neck especially were often so stiff and sore that I couldn't work, couldn't sleep, couldn't think straight, etc. Headaches and severe migraines were a regular problem, and the Tylenol allowed me to function on at least a mediocre level.

Apparently today my liver and kidneys are none the worse for wear, but knowing what I know now about it, the decision to take it wouldn't be a no-brainer the way it was back then. I might still use it, but I would be more cautions about how much and how often I took it. I haven't taken any Tylenol in probably at least 7 or 8 years, because after I removed all (and I do mean all) of the problem foods from my diet, all the stiffness, headaches, migraines, aches, and pains went away, and never returned.

Tex


Hi, Tex.
I already have liver problems, and kidney problems run in my family, so I avoid Tylenol. It never relieved so much as a mild headache for me anyway.

I eat such a bland diet, there isn't anything I can take away.

Sydney
_________________
Sydney
Lymphocytic Colitis-12/17/2012
MS
Back to top
SweetSydney
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 11 Jan 2013

Posts: 104
User's local time:
2017 Jun 26 - 1:07 AM



Location: United States

PostPosted: Sat Aug 02, 2014 5:56 pm    Post subject: Reply with quote

JLH wrote:
Sydney, check out Low Dose Naltrexone (LDN).

First thing I Googled not necessarily the best. http://www.nationalmssociety.org/Treating-MS/Co...w-Dose-Naltrexone</td>


Joan,
Started thinking about the LDN.

Any idea of the dose I should request?

I thought, just because it didn't help Craig, doesn't necessarily mean that it won't help me.
Baclofen is just not cutting it anymore, with spasticity. I was told at my last appt. to expect to be in a wheelchair before too much longer. I'm fighting that idea, hard.

Sydney
_________________
Sydney
Lymphocytic Colitis-12/17/2012
MS
Back to top
tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30073
User's local time:
2017 Jun 26 - 1:07 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Sat Aug 02, 2014 6:19 pm    Post subject: Reply with quote

Sydney,

I agree that it definitely might be worth giving LDN a good try, because many people have had amazing results with it, and remember that even the best medications known to modern medicine don't work well for everyone. The only way to be sure, is to give it a fair trial.

I'm not familiar enough with it to recommend a starting dose, but I hope that anyone who does recommend a dose takes your relatively low weight into consideration. I'm guessing that you may need about half the dose recommended for most people, because I believe that dosing should be based on body weight.

I'm hoping that this will work well for you, so that they can save that wheelchair for someone else.

Tex
_________________
cowboy

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.
Back to top
SweetSydney
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 11 Jan 2013

Posts: 104
User's local time:
2017 Jun 26 - 1:07 AM



Location: United States

PostPosted: Sat Aug 02, 2014 6:28 pm    Post subject: Reply with quote

Hi, Tex.
I agree-I think giving LDN is definitely worth a try.

Thankfully, my DO is very open-minded when I ask to try a medication, and he will know the dose to prescribe.

I've checked, and it only comes in a 50 mg. tablet, so I am going to ask him to prescribe a lower dose, and send it to a compounding pharmacy.

Thank you, Tex. I really don't like the idea of losing my independence to a wheelchair. Yes, they can safe it for someone that really needs it.

Sydney
_________________
Sydney
Lymphocytic Colitis-12/17/2012
MS
Back to top
JLH
King Penguin
King Penguin


Joined: 17 Jun 2008

Posts: 4272
User's local time:
2017 Jun 26 - 1:07 AM


Food Intolerances : gluten, casein, soy, eggs, yeast; 3+ rice, chicken, corn, almond; 2+ tuna. oat, beef, cashew; 1+ white potato, walnut

PostPosted: Sun Aug 03, 2014 10:48 am    Post subject: Sydney, great decision Reply with quote

Are you on Facebook? Lots of good groups there. I am sure there are plenty of Yahoo groups, too. I just don't like that format.

Francie (MS patient) was in hospice and got her life back with LDN.

BRB with some MS links for you.
_________________
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

Joan
Back to top
JLH
King Penguin
King Penguin


Joined: 17 Jun 2008

Posts: 4272
User's local time:
2017 Jun 26 - 1:07 AM


Food Intolerances : gluten, casein, soy, eggs, yeast; 3+ rice, chicken, corn, almond; 2+ tuna. oat, beef, cashew; 1+ white potato, walnut

PostPosted: Sun Aug 03, 2014 10:52 am    Post subject: LDN for MS web sites (I'll add to this) Reply with quote

http://crystalangel6267.webs.com/multiplesclerosis.htm

LDN Trust http://www.ldnresearchtrust.org/search/node/Multiple%20sclerosis

http://www.ldners.org/

http://www.honestmedicine.com/about-the-book.html

There really is waaaaaay too much, just Google. There is a You Tube video I want to find for you.
_________________
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

Joan
Back to top
JLH
King Penguin
King Penguin


Joined: 17 Jun 2008

Posts: 4272
User's local time:
2017 Jun 26 - 1:07 AM


Food Intolerances : gluten, casein, soy, eggs, yeast; 3+ rice, chicken, corn, almond; 2+ tuna. oat, beef, cashew; 1+ white potato, walnut

PostPosted: Sun Aug 03, 2014 11:04 am    Post subject: DIY LDN Video Reply with quote

https://www.youtube.com/watch?v=bOekLFIvR7I

I do have mine compounded (so far) but quite a few PP make their own from the tablets.

You are welcome to join our PP LDN Facebook group even though it is for MC, mainly.

If there are thyroid issues, the advice is to start low. I started 1.5 and will go to 3.0 and then to 4.5 which the recommended dose for most. Everyone is different and we have to adjust.

Your best bet is to connect with others on Facebook with MS who will answer your specific questions. They have files of info for you.
_________________
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

Joan
Back to top
JLH
King Penguin
King Penguin


Joined: 17 Jun 2008

Posts: 4272
User's local time:
2017 Jun 26 - 1:07 AM


Food Intolerances : gluten, casein, soy, eggs, yeast; 3+ rice, chicken, corn, almond; 2+ tuna. oat, beef, cashew; 1+ white potato, walnut

PostPosted: Sun Aug 03, 2014 11:15 am    Post subject: Check out You Tube for videos LDN and MS Reply with quote

http://www.tv2.no/v/717059/

https://www.youtube.com/watch?v=36b1bIkz1x4
_________________
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

Joan
Back to top
SweetSydney
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 11 Jan 2013

Posts: 104
User's local time:
2017 Jun 26 - 1:07 AM



Location: United States

PostPosted: Sun Aug 03, 2014 11:37 am    Post subject: Re: Sydney, great decision Reply with quote

JLH wrote:
Are you on Facebook? Lots of good groups there. I am sure there are plenty of Yahoo groups, too. I just don't like that format.

Francie (MS patient) was in hospice and got her life back with LDN.

BRB with some MS links for you.


Hi, Joan.

Yes, I am on Facebook. I don't like the format on Yahoo, either.

That is so wonderful to learn that Francie got her life back with LDN.

I found a pharmacy in Aurora, IL that compounds LDN. I am going to call them tomorrow, and ask if they can compound 4.5 mg, before I see my DO.

Thank you for helping me, Joan.

Sydney
_________________
Sydney
Lymphocytic Colitis-12/17/2012
MS
Back to top
SweetSydney
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 11 Jan 2013

Posts: 104
User's local time:
2017 Jun 26 - 1:07 AM



Location: United States

PostPosted: Sun Aug 03, 2014 11:40 am    Post subject: Re: LDN for MS web sites (I'll add to this) Reply with quote

JLH wrote:
http://crystalangel6267.webs.com/multiplesclerosis.htm

LDN Trust http://www.ldnresearchtrust.org/search/node/Multiple%20sclerosis

http://www.ldners.org/

http://www.honestmedicine.com/about-the-book.html

There really is waaaaaay too much, just Google. There is a You Tube video I want to find for you.


Thank you for all the links, Joan.
I had to add them to my "Favorites", so that I can read them, thoroughly.

Sydney
_________________
Sydney
Lymphocytic Colitis-12/17/2012
MS
Back to top
SweetSydney
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 11 Jan 2013

Posts: 104
User's local time:
2017 Jun 26 - 1:07 AM



Location: United States

PostPosted: Sun Aug 03, 2014 11:46 am    Post subject: Re: DIY LDN Video Reply with quote

JLH wrote:
https://www.youtube.com/watch?v=bOekLFIvR7I

I do have mine compounded (so far) but quite a few PP make their own from the tablets.

You are welcome to join our PP LDN Facebook group even though it is for MC, mainly.

If there are thyroid issues, the advice is to start low. I started 1.5 and will go to 3.0 and then to 4.5 which the recommended dose for most. Everyone is different and we have to adjust.

Your best bet is to connect with others on Facebook with MS who will answer your specific questions. They have files of info for you.


I checked with Express Scripts and they only have 50 mg. tablets. I would prefer to have mine compounded. But if the pharmacy in Aurora, IL doesn't compound LDN, I will use the directions in the YouTube video.

Yes, I am Hypothyroid, with Hashimoto's.

Thanks for telling me to go slow.

Thank you, I will check with others on Facebook with MS.

Sydney
_________________
Sydney
Lymphocytic Colitis-12/17/2012
MS
Back to top
Display posts from previous:   
Post new topic      Reply to topic    MICROSCOPIC COLITIS SUPPORT Forum Index -> Frequently Asked Questions about CC, LC, and MC All times are GMT - 6 Hours
Goto page Previous  1, 2, 3  Next
Page 2 of 3

 
Jump to:  
You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot vote in polls in this forum

Remove cookies set by this forum

Search online dictionaries
(Powered by OneLook® Dictionary Search)
Enter word or phrase:
Enter a word to search for dictionary web sites that include that word.
Enter a pattern consisting of letters and wildcards to search for words.
Valid wildcards are * (matches multiple letters) and ? (matches one letter).
Locations of visitors to this page


Powered by phpBB © 2001, 2005 phpBB Group
IP Country Flag 2.9.6b © 2005, 2008 - 3Di (aka 3D)

Copyright © 2005–2017 perskyfarms.com, All Rights Reserved

Copyright Notice: The material on this site is copyrighted by perskyfarms.com, and it is protected from unauthorized copying and dissemination by United States copyright law, trademark law, international conventions, and other intellectual property laws. This copyright protection also extends to any and all images, found on any and all pages of this site.

Please contact us at this address for permission, if you wish to use any material on this website for any commercial or public purpose.

We have made a good faith effort not to violate any copyright. If we have unknowingly done so, please contact the site administrator, at this address, and the issue will be promptly corrected.

Disclaimer: The information contained within this site is intended solely for general educational purposes, and is not intended, nor implied, to be a substitute for professional medical advice relative to your specific medical condition or question. Anyone who chooses to use any information found here, does so at his or her own risk. Always seek the advice of your physician or other health care provider for any questions you may have regarding your medical condition. Only your physician can provide specific diagnoses and therapies. By using this site you agree to the following terms and conditions:

Certain members of this discussion board are practicing medical professionals. They are not here to offer medial advice, they are here because they have been diagnosed with microsopic colitis, and they are interested in sharing their own personal experiences concerning the disease, and learning from others in all walks of life, who also have to deal with these issues. If you have any questions or concerns regarding your health, you should consult with your own doctor, or medial professional.

If you think you may have a medical emergency, call your doctor, or 911, immediately. The members of this board, regardless of whether or not they are medical professionals, cannot respond to issues requiring urgent medical attention. Please note that no legal action can be taken by any user of this site, as a result of any information found here, and that none of the parties involved, neither individually, nor collectively, nor the owner of this site, can be held responsible for any information offered in the course of discussions, regardless of circumstances, whether those discussions are in a public or private form, and regardless of whether of not any of the parties involved are professionals. Remember that this discussion board is not intended to be a replacement for a consultation with your doctor or other medical professonal, it is intended as a sharing of knowledge and information from the research and personal experience of the members of this discussion board.

This site does not recommend or endorse any specific tests, products, procedures, opinions, or other information that may be mentioned anywhere on this site. Reliance on any information provided here is solely at your own risk.

Main Message Board | Treatment Discussions | Polls | MC FAQs | Recipes | Information Sites | Medication Info | Diet Info | Jokes | Photo Gallery