LDN update

DebE13 · Post by **DebE13** » Sun May 29, 2016 5:06 am

I've been on LDN now for about 25 weeks and am pleased with the results. I had a nightmare start on it since I failed to start on a low dose and gradually increase. Thyroid patients should be aware there can be some nasty consequences for not following the guidelines. The odd thing is, I am back to my original dose of thyroid meds and things seem to be fine. After having almost two months of chest pain, some very expensive tests to confirm there were no heart issues, and thinking I may just die any day- the
LDN has worked wonders for my pain. I've settled on 4mg since I experienced "issues" when I first started and then again when I increased. I was afraid to change the dose again because it was just to much to deal with. During the transition I dropped my levothyroxine dose and my chest pains subsided almost immediately.

I have been off entocort now for around three months and there has been no change in the staus quo. I was hoping for improvement on the D end but I am settling for being content with not taking any steriods, no matter how small a dose. I continue to have D and frequent the bathroom 4-6 times a day but in general, feel the best a I have ever have in a long time.
The entocort prevented night issues and rumbling and I continue to have no problems without it. I debate about the D and wonder if I am doing myself more harm than good allowing inflammation to continue or if I should be taking something to surpress it and live with those consequences. I continue to be vigilant with my diet yet there still has to be something that's throwing a wrench into the works. Life has been a whirlwind dealing with my throid issues over the past three years, my son's array of medical issues, and my poopy cat who just started her own flare after a year of being A-ok with the grain free diet (hubby fed her canteloupe and increased table scraps). In addition, I changed jobs about a year and a half ago (best decision ever) which allowed me to run for a seat on my Village's board since I am no longer an employee. I won the election this April and now am heading the committee to publish our centennial book which needs to be completed early next spring. That's a tight timeline for writing a book. I am excited because the history aspect excites me but I wonder if I made a mistake getting back into politics. There is a big time commitment for meetings and I am back into the very thing that made me leave my job of 16 years in the first place. I now function in a different capacity so I am hoping to do some good but it may be a stressor I could have done without. Hopefully, in a few years I will look back and see some positive change from my efforts.

The LDN has decreased my pain tremendously but it is not totally gone. I dont think it would be realistic to think it would be. I did notice impovement the very next day after starting it but am seeing its full effect after being in my system for months. I, at least, am comfortable working again and deal with the carpel tunnel flares and joint pain in my fingers due to osteoarthritis as it comes and goes. I still get the neck and shoulder pains/tension but I still believe 100% that is tied into my thyroid issues. I see a new endo in July for my annual follow up so hopefully he will be more open minded than the last. The new endo from far away that helped me during my transition to finding a local doc has remained supportive but we decided the issues of insurance and being out of network would be a big obstacle in my care and the distance of
2 1/2 hours to see her warranted giving this new local endo a try.

Thr LDN has improved the quality of my sleep, seems to have raised my mood, helped with the pain, and has cleared some of the brain fog. I hope to get my son on it as a means of helping his taper off prednisone. I also read some accounts of it helping with stabilizing liver enzyme tests. It's worth a try. His GI is not familiar with it but it won't be the first time I bring up non traditional methods.

Post by **tex** » Sun May 29, 2016 12:29 pm

Deb,

Congratulations on becoming a politician and winning the election.

It's interesting that you're back on your original thyroid treatment dose again, but I would expect that to happen after your body became adjusted to your LDN treatment.

Thanks for the update, and good luck with the new endo.

Tex

Gabes-Apg · Post by **Gabes-Apg** » Sun May 29, 2016 2:57 pm

Sorry that the D still plauges you - albeit, by the tone of your post and what is happening in your life, you come across as 'being ok' with how things are...

Great that the pain has reduced, and heres hoping that over time things keep gradually improving.

Good luck with getting your son onto the LDN

take care

DebE13 · Post by **DebE13** » Sun May 29, 2016 3:48 pm

It's rather strange because I would have never thought I would become involved with politics in a million years but I guess life throws a series of long-term events in your path and the only way to a make a difference is to get involved. I love the small community where I live and I'm an empty nester now so I have the time and surprisingly the energy. Haha.

The LDN has been a learning experience and I'm thankful it's working. The other drugs suggested weren't anything I wanted to try but was reaching the point of not having a choice. Hopefully my case will help my PCP learn more about its use and in turn, can help some other people in her practice who may be going through similiar issues. It was a great feeling to reach that point where I had been off entocort long enough to declare it a success.

I'm not satisfied where I' m at yet with the D but I also know it's up to me to take it further within my own diet to experiment with other possible triggers and I just haven't mustered up the willpower yet to commit to trying. Sometimes it's easier to go with maybe I will never reach that point or my other conditins are interfering with true remission but there's always that little voice in my head that knows I could to more. I remain faithful to being GF, SF, and DF but there's always more to try. That's what I'm working on with my son....the idea that it can be a healthy food yet not "good" for you.

Thanks for all the support!

Greengoddess · Post by **Greengoddess** » Mon May 30, 2016 3:36 am

I am thinking of trying LDN. What problems can occur if you take the higher dose to start with?

DebE13 · Post by **DebE13** » Mon May 30, 2016 6:51 am

http://tinyurl.com/ldn-side-effects-and-dosing

I would suggest checking out the LDN Yahoo support group. There is a ton of information there and is very helpful. Some people don't have any issues others do. It all seems to be very individual to how one reacts to it but seems to be best practice to start low. There are others who have stated one may not have the luxury of slowly increasing the dose. It may also depend on what health issues you have too as it is used for a wide array of problems.

I wouldn't let worries about dosing preent you from giving it a try.

https://groups.yahoo.com/neo/groups/LDN_Users/info

Gabes-Apg · Post by **Gabes-Apg** » Mon May 30, 2016 1:33 pm

Greengoddess

are you on Facebook? if so I can provide some groups for you

Erica P-G · Post by **Erica P-G** » Tue May 31, 2016 3:02 pm

Why does one take LDN and what prompted them to take it in the first place? Was it because they stopped a steroid? Couldn't get their WD to stop? Had some other body issue beyond MC?

My curiosity is in overdrive at the moment

Thanks
Erica

Gabes-Apg · Post by **Gabes-Apg** » Tue May 31, 2016 3:09 pm

Erica
this discussion may help answer your question

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=20020

Gabes-Apg · Post by **Gabes-Apg** » Tue May 31, 2016 3:30 pm

Erica
this discussion will also provide food for thought regarding LDN
http://www.perskyfarms.com/phpBB2/viewt ... hlight=ldn

Erica P-G · Post by **Erica P-G** » Tue May 31, 2016 3:32 pm

Just read the whole thread, I don't feel it explained what I'm really seeking

Why have people gone on LDN? What made them feel that was something to try? Does LDN mask something while we are eating our restricted diet plan?

Gabes-Apg · Post by **Gabes-Apg** » Tue May 31, 2016 4:14 pm

Erica
did you look at the second link I provided - that may help you more..

Erica P-G · Post by **Erica P-G** » Tue May 31, 2016 4:38 pm

Thanks Gabes...apparently with Tex's deeper info its a 50/50 thing depending on if one responds to antihistamines or not along with diet change and if someone has more than one debilitating AI issue at hand.

Ok...that helped a lot!

Gabes-Apg · Post by **Gabes-Apg** » Tue May 31, 2016 4:47 pm

My take on it
It has helped some, not all (like most things in MC world)
From the contributions to the discussions, it tended to help those that had other AI issues before they had MC.

It is not the be all end all, if people are having surgical procedures, you have to stop it.
Accessing it can be an issue for some, and sorting out dosage can take a bit of trial and error.

DebE13 · Post by **DebE13** » Sun Jun 12, 2016 6:54 am

Erica, I started LDN as a means of lessening muscle pain. I saw a rheumalogist and found I have osteoarthritis in the fingers and toes but beyond that, no other issues. I was convinced I had lupus but was relieved that dx was not part of the picture. I still have the facial rash issue that pops up but I've linked that to the sun (in part). I showed my rheumalogist a photo but she said I would have to come back while it was active to get a better view of what is going on. Luckily, it hasn't appeared yet this spring but I've also been more aware of when I need to get out of the garden when I feel it coming on.

I still have considerable neck and shoulder pain but I attribute that to my thyroid condition. I hope to find an endo someday that will allow me to try NDT to satisfy my belief that it will help. So far, I've had no luck finding one in my area.

My rheumalogist said we could consider a biologic if the LDN didn't help but thankfully I am satified with the results because that is a path I don't want to take. My muscle/joint pain was so bad that I was afraid I wouldn't be able to work anymore.

The LDN hasn't helped with my WD but did give me the ability to discontinue entocort. The very low dose I was taking helped with night issues and rumbling. There still has to be something in my diet that I need to find.

I had horrible quality of sleep and the LDN has helped me feel much more rested. It has also improved my mood to some degree. I have reached the point now where the dibilitating pain is a far away memory and sometimes the idea that I'm "all better" creep into my mind but I know it would be an unwise choice to discontinue. I am by far not anywhere near "good" but my definition of feeling good is no where close to that of a healthy person. I am functional and can fit in extra activities beyond work and household obligations so, for me, that is a success. I'm not sure if that is just reality or a sad statement that I can't find anyone in the medical community to help me further. Sadly, EVERYTHING in the care plan that has worked has come from the suggestions here, not from my doctors. Hopefully, I will be a part of educating the doctors to listen to the people that know what works.

There seems to be so many health issues that it can help with that I am a firm believer that it is at least worth a try.