I'll just add my two cents..

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Skjura
Regular Member


Date Joined Jun 2007
Total Posts : 210
   Posted 11/30/2007 4:42 AM (GMT -6)   
 
Why not have a look at this, at the same page
there is a video interview betw. a doc and a neuro
 
about MS, also 2 women with MS is informing us
 
 
I have an autoimmune disease and I am now in remission!
Wonderful!
Happy to share the video with you all.
 


 
Diagnosed CD June 2007. Have been on a minor prednisone medication. Did make a difference while max dosed. Got my problems back when tapering.
 
Using Low Dose Naltrexone from sept. 2007. See yahoo.com. A member in the group "lowdosenaltrexone" at yahoo. A mixed group, members with MS, Crohns, Colitis Ulcerosa, psoriasis, other autoimmune diseases.
 
Use home made scd yoghurt containing a lot of probiotics - a benefit for the intestines. I don't use white sugar. No yeast in glutenfree, homemade breads.


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3530
   Posted 11/30/2007 9:12 AM (GMT -6)   

Hi Skjura,

Thanks for posting.  I am a bit confused though (this should not be surprising to those who know me).  You mention that you have an autoimmune disease - would this be the Crohn's that you have listed in your signature?   I have heard that some with Crohn's have had success with LDN.  There are a lot of studies with LDN going on currently that show some hope for Crohn's.  For some reason there does't seem to be much success with LDN and MS.  I know that LDN has been available to us as an off label MS drug for some twenty years.  Unfortunately for us, this has not translated to a drug that has been shown in any way to be beneficial.  It hasn't got much attention for studies even due to the lack anecdotal success. 

My neurologist was even going to let me give it a try but I decided against it after doing my own poking-around type research online.  I was not too impressed with the information I found.  I will stick with what is working for me; healthy lifestyle and copaxone.  You are so limited as to the symptom meds you can take when you are on LDN.  I need to know that if I need something for pain or spasticity I can take it.  You just cannot do that on LDN.

I wish you the best of luck with your current regimen.  I am very glad you are in remission and feeling well. 

Love and prayers,


Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 


Skjura
Regular Member


Date Joined Jun 2007
Total Posts : 210
   Posted 11/30/2007 3:47 PM (GMT -6)   
Hi Gretchen and all the MS'ers here,
 
first: yes, I've got Crohn's, that's correct. You are right that there is investigations going on now on Crohn's and LDN. But, Gretchen, there is also investigations going on in the US now with MS and LDN. And what's more fun
 
A lot of doctors don't know anything about LDN, the medicine has been used for other groups since the beginning of the 80'. It HAS been used on people, it has been used in doses on 5o mg each day on other groups.
WE who have autoimmune diseases needs only 4,5 mg a day. The medicine is very mild, and makes no side effects EXCEPT for the first weeks. The side effects is then: some sleep disturbances or tiredness. But often the fatique and blather problems goes away quite qick for MS ers. Balance is improved too.
 
Yes, dr. Bihary (a NY neuro) started to give LDN to a girl in the 80', but the medicine has not been used that early on big MS groups. Now there are thousands of MS'ers using it.
 
In our group at yahoo...we get new members every day. The largest prosent are the MS'ers.
There is only a few Crohnies there. Believe me, I know, cause I am there to participate every day. I love what LDN is doing to me. I know a lot of MS'er that thanks God for LDN and never will stop using it, it has been a fantastic medication for them.
 
You won't hurt anybody by learning more about it, it's very cheap to use, only 60 cents a day, it's no side effects, and it helps a lot of MS'ers.
 
 
With all the best from
Ingrid
PS your neuro may be sceptical, but there are neuros that is prescribing it after they have seen the MR's taken after some months on LDN....
 

(Mod. Note: Thanks for u'r help and support, however, please refer to forum rules before posting links. I've edited u'r post to remove links. Thanks for u'r support and understanding.) 

Post Edited By Moderator (rhondab) : 11/30/2007 4:46:18 PM (GMT-7)


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 11/30/2007 4:09 PM (GMT -6)   
Foks here actually know lots about LDN. And know, for example, that the National MS Society is (along with some others) sponsoring proper scientific double-blinded studies trying to determine if in fact it is helpful for people with MS. When those studies are completed, we'll all know whether in fact the anecdotal evidence you and others on the yahoo group offer are valid, and whether we need to consider it. But thanks for the link.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Skjura
Regular Member


Date Joined Jun 2007
Total Posts : 210
   Posted 11/30/2007 4:39 PM (GMT -6)   
Thank you uppitycats for the support by telling
the name of the National MS Society, I couldn't remember it.....it's anyway exciting waiting for the results of different studies. Anyway, welcome to the yahoo group to read what the MS'ers say ...to you who are interested ;-)
Skj.


 
Diagnosed CD June 2007. Have only used prednisone. Did make a difference while max dosed. Got my problems back when tapering.
 
Using Low Dose Naltrexone from sept. 2007. See yahoo.com.
LDN helps me. I am now in remission. Have no side effects. (LDN gives just a few - if any the first weeks on it). It's cheap. Just 60 cents a day.
LDN modulates the immunesystem through stimulating the endorphines.


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3530
   Posted 11/30/2007 6:16 PM (GMT -6)   
Skjura,
 
I know all of this about LDN.  I even went as far as finding a compounding pharmacy.  I know it is cheap but it is more expensive than my copaxone because that is covered by my insurance.  Again, my biggest problem with LDN is that there is no signigicant testing that proves its efficacy.  I also do not like the limits it sets on my other meds that treat my symptoms.  If I am on LDN and I am in pain I am severely restricted as to what I can take.
 
It is beginning to sound like you are pitching LDN.  Please be careful and share but be respectful of what others are taking and doing.  Treatment decisions are very personal and need to be respected as such.
 
Love and prayers,
 
Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 


Skjura
Regular Member


Date Joined Jun 2007
Total Posts : 210
   Posted 12/1/2007 10:52 AM (GMT -6)   
Gretchen,
could you please enlighten me, my English isn't too good, what does pitching mean? I feel that there is some misunderstanding her...have I really said something wrong?

In that case, I am sorry. Do not mean to be mean to you or anybody else in here, I truely am a person that is careing and careful. As far as I see I haven't treated anyone in these posts without respect, and I have not critizised anyones medicine choise...have I?

I have always thought that everyone has the freedom to chose what is best for him/her, but if a person only knows winter how could he choose summer? There is a lot of people never heard about LDN. I hope our good intentions work with us, and let the folks themself chose what's best.
From the deepest of my heart,
I didn't mean to spread disrespect,
Vaya con Dios, Gretchen
 
Diagnosed CD June 2007. Have only used prednisone. Did make a difference while max dosed. Got my problems back when tapering.
 
Using Low Dose Naltrexone from sept. 2007. See yahoo.com.
LDN helps me. I am now in remission. Have no side effects. (LDN gives just a few - if any the first weeks on it). It's cheap. Just 60 cents a day.
LDN modulates the immunesystem through stimulating the endorphines.


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 12/1/2007 11:16 AM (GMT -6)   
Hi Skjura,
 
    I believe the folks here know about LDN, we have had several discussions about it, but it never hurts to be reminded of the treatments available.  The point Gretchen is trying to make I believe, is that LDN is not for everyone.  My husband certainly could not take it because of the narcotics he takes for pain, so it does have limited use for some people as far as other meds you can take with it.  I am glad that it works for you and I hope that everyone who is seeking out the best treatment to deal with MS does so knowing as much information as possible. 
 
    Thank you for sharing, and I wish you the best of luck in dealing with your CD.  I hope you stay in remission for a very long time.  Your signature could be perceived as pitching, or pushing a certain treatment method.  I don't believe you mean it that way, just sharing, but I think that some folks might take it as advertising.
 
Co-moderator for Multiple Sclerosis
 
Allow Healing Well to continue to help others, clink link for details

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 12/1/2007 1:03 PM (GMT -6)   
You've offered your opinion, you've offered some links, you've patronized us by suggesting we're not smart enough or interested enough in your claims to engage in dialog about them. Thanks, but maybe it's time for you to move on.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....

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