Hello all

First post..

Male 42 been taking LDN 4.5mg with avicel filler in capsule form for 4 months...the idea was to help slow alleviate any symptoms associated with Sjogrens/Hashimotos and Chronic Fatigue

Results

My First few nights I awoke after some weird dreams..after that no side effects..I can think of related to LDN.

After now 4 months I can say categorically that LDN has not helped at all.

I say not at all..because I have not stopped to see if Symptoms suddenly get worse..perhaps that would indicate it was beneficial.

However I also intend to finish of this last Script so another 70 days or so..will see if any thing changes during this time.

Clinically My Thyroid Antibodies have increased whilst taking LDN.

Also Ive had to increase my Thyroid meds whilst on LDN

Sjogrens symptoms of dryness have become far worse since taking LDN....Ive gone from no eye plugs to quadra plugged and my skin and mouth are far worse...I awake now in the night to sip water hourly whereas when i started LDN I could get thru the night with mouth gel.

The eyes are drier as already stated but also I awake blind as always my eyelids are stuck dry to the eyeballs..this also has only happened during the taking of LDN.

Fatigue...Im suffering Chronically from it..and after a long time on LDNI can say that the fatigue has not improved as I would have liked..I walk around still like a very old man..taking constant naps..or and falling asleep in the chair.

No one ever said to me that LDN is a miracle and no one ever said that it worked for everyone so I am not bitter at the drug or anyone.

it might be doing me some good I just have no idea what that could be.

I wish all taking it the best...it seems you never know..the side effects do seem minimal.

Cheers

jon

Hi Jon,

Welcome to AHSTA.

I've been on LDN just over 5 weeks now and even though I have sen some improvements it is still early days.

I'm sorry to hear also that so far you haven't seen any improvements. I am under no illusions that LDN will help with everything but if it helps with some things that's got to be better than nothing.

I also suspect I have sjogren's too and can't get my GP to even test me for it, i see my dentist this week and will ask if she can run a test to see if I have it as she was the one that noticed i was not producing saliva and put me on some artificial saliva solution. My dry mouth has not improved I feel like my tongues is stuck the rough of my mouth in the morning and my throat feels so dry. I still have dry eyes hard to know if that is TED thyroid eye disease of Sjogren's?

Do you get a compound pharmacist to make up your LDN 4.5mgs I noticed the avicel filler and wondered if this could be one of the reasons you are not seeing any kind of improvement, I have seen on other sites about the fillers they use to make up the capsules, not sure though if this is one of them so i will take a look around and see what comes up.

Also do you have your thyroid labs with reference ranges could be why your AB's have gone up rather than down as Val stated.

Thanks for sharing your time so far on LDN. I hope too that you will see some benefit from it in the near future.

Best wishes

Lolly

 Welcome to AHSTA!

 I am sorry to here that the LDN is not working for you.

I am hoping that you feel better and find some thing that will work better for you.

Thank you for posting your experience. It is important for every one to know that this is still an experiment and there might be some people that it dose not work for.

 Thank you again for posting and I hope to see you around.

Angel