low dose naltrexone

[stephgurl1986]

Chris, can you tell us how often (like 1x/hour...) you used eye drops before you started this treatment and how often you are using them now?

[calli66]

Thanks for the update Chris,

I also have Sjogren's, and have considered LDN. Right now I am taking Plaquenil, which is not supposed to be compatible with LDN. My symptoms are pretty mild, with dry eye the worst. But that has gotten much better lately.

Calli

[painintheeye]

eye drop usage

i didn't use eye drop that much not because i didn't need it but i just didn't think i am bettered by it. i often find the more i use the more miserable i feel. so i refrain from using. i use it daily to sleep and when i absolutely feel i need to which maybe once a day or none at all. i often find myself using ice packs or jump in the shower to find better relief. during the one month on LDN, i can recall maybe 4 instilations of eye drops and they were in two worse days where i experienced a lot of girttiness and sore eyes with some stining pain coming about. i recalled i was in very strong A/C rooms with the vents blowing at me.

for Calli,

i think plaquenil is contraindicated to LDN but you may double check that. i also understand that the purpose of plaquenil is to delay the SS progression. it does not treat or reverse dryness symptoms and it is a drug that is not meant for long term use. if your SS symptoms start to progress while on plaquenil, then the next line of defense would be the immunosuppressants which i understand can come with a lot of side effects. i am not too fond of those and that's why i am sticking with LDN. One observation i made while reading the SS forum is that a lot of SS patients progressed and started to have more AI related diseases even while on plaquenil or immunosuppressants. I don't know why that is because if immosuppressants are to be working, shouldn't these drugs stop further progress? the conventional theory is that our immunity is in overdrive so by suppressing it, it stops these cells from attacking our "self". but what i see is more people getting more rare AI diseases as their SS advances beyond just dry eyes and dry mouth. i am just not comfortable with these immunosuppressants that are making us weaker. i believe my body has strengthened during the past month on LDN. Well, don't sue me on it but it's just my personal experience and of those who have tried it for longer to treat SS purpose. one guy couldn't breath due to chronic bronchitis and he could breath in 2 days. he needed to use a nebulizer constantly and now he only needs 2 advair. and he told me all his other symptoms are basically gone (normal tear film in one week) but his saliva came back a little only maybe because he suffered dry mouth for much longer. I have heard many first hand experiences and they all feel their health has improved so much and they don't get sick and if they do, their symptoms are very mild. another observation i've made is that it seems that the earlier you are on LDN your chance for symptom relief may be quicker because we don't really know whether our lacrimal or salivary glands have been permanently destroyed or just temporarily blocked? i don't think at this point anyone of us have the answer. the man with the breathing problem had dry eyes (0 schrimmer) for at least one year yet he is able to produce tears on day 2 and completely normal on day 7. so i am hopeful about my chance for dry eye relief given i've only suffered dry eyes for 8 months prior to LDN. Anyway, i will tell all of you what other LDN/SS users have told me prior to my decision to take the LDN plunge, "there's nothing to lose in trying (low cost/little side effect) and everything to gain".

i sincerely hope everyone finds what's best for them and find the relief we're all looking for.

happy new year from Asia,

Chris C

[Rojzen]

TREMENDOUS good work on the LDN

Chris C and Sazy123: I am in awe. What you have discovered, mastered, and then recounted so beautifully will be of immeasurable help to many, many here. . .I cannot thank you enough. This is gutsy, leading-edge, and really brilliant work. With some luck, we will have more doctors on board with LDN therapy soon. In meantime, you have armed us with enormous resources for serious, serious self help. Thank you from the bottom of my heart. I wish you a bounty of improving health and happiness. . .You both deserve that and so much more. . .

[Toril]

...thanks for the update!!

[jannz]

LDN and thyroid

Hi Everybody,

I thought I would post an update to my experience with LDN -- and to alert anyone that has thyroid disease and is taking daily thyroid meds (HRT) that if they want to try LDN to read this first.

I have an autoimmune disease triad -- vitiligo, Sjogrens, and Hashi's. I decided to try LDN to stop the progression of the autoimmune disease....three is enough....thank you very much.

I was on LDN for two days and noticed an immediate surge in ENERGY -- with a captial E. Wow...couldn't believe how much energy I had. For the first 19 days on LDN I was enjoying my experience...I was having the sleep disturbances that are somewhat expected...but I had so much energy it didn't matter that I wasn't sleeping long hours.

OK -- so on day 20 of taking LDN, it's the weekend and I also start my cycle. Often when you take thyroid HRT and you start your period you can get a feeling of extra thyroid hormones because of the decrease in estrogen it makes the thyroid hormones more available (or something like that.) Well, I really felt like something was going on like that -- in fact I felt like I was on "speed" or something. It sort of freaked me out. It was like I couldn't sit still.

What I figured out was that I had too much thyroid hormones in my system. I'm guessing -- remember there are many unknowns about this LDN therapy -- that the LDN boosted my under active thyroid to produce more thyroid hormones, add to that my taking daily thyroid meds -- both T3 & T4, and then I had that decrease in estrogen ...well, it just pushed me way over the top and I started to go "hyper" -- not in the disease sense...just in my physical symptoms. I doubtful that LDN caused me to start producing the antibodies that are present in Hyperthyroidism. If anything it caused a decrease in my antibody production which allowed my thyroid to produce more hormone. Again...I'm guessing here.

Going hyper is not pleasant -- my heart rate zoomed way up...I could feel my heart pounding in my chest -- and that creates some anxious feelings. I decided to stop the LDN and to not take my thyroid meds the rest of that weekend.

My doctor is prescribing LDN for me so I got in to see her on that following Monday -- my heart rate was 91 -- pretty high. She suggested I just cut my thyroid meds in half for a few days and then decide if I wanted to continue the LDN. After a few days I did feel somewhat better, my heart rate was coming down -- but ultimately I decided to stop my thyroid meds altogether and to NOT restart LDN.

What I plan on doing is to let things settle down with my thyroid situation -- in 4-6 weeks I'll get my labs redone and see where the levels are -- and then perhaps restart LDN without having ANY MEDS in my system. In my opinion it's just too hard to manage. I had such an immediate response to LDN, but I couldn't tell what-was-what... LDN ??? or thyroid meds ????

I am hopeful that the LDN has 'repaired' my thyroid and that I won't have to take thyroid meds anymore -- but I realize that's probably wishful thinking...but it is what I'm hoping. There is another woman with thyroid disease that had the same immediate reaction I did -- she's also stopped taking LDN and her thyroid meds. She was taking the same type of thyroid meds I was --- T3 & T4 -- if you take thyroid meds you'll understand what that means.

OK -- having said all this you should know that there are other thyroid folk that are taking LDN and are NOT having this hyper reaction...I believe they are only taking the T4 meds though --- so I'm suspecting it was the T3 med that may be the issue -- but again...who knows ??? Threre is no way to know for sure.

I am not trying to dissuade anyone from investigating LDN therapy because I really think it is viable therapy -- I can't wait for all this thyroid stuff to sort itself out and then I can restart LDN. There are hundreds of amazing stories with lots of folk getting some relief from their diseases -- not curing because LDN is NOT a cure --- but they are getting some relief of symptoms. I just would recommend that anyone that takes ANY medications -- especially the thyroid meds -- to be prepared. Do lots of research...ask questions etc etc. I'm glad I have my prescribing doctor to help me through this experience...so if possible find a doctor that is experienced with LDN. I'm my doctors first patient on LDN...so we are figuring this out together.

Please let me know if you have any questions / concerns...I'll be happy to help.

Best wishes...
Jann

BTW: I did not have any additional relief of my dry eyes -- however, because of the supplements that I've been taking for some time, my eyes weren't that dry when I started LDN. In addition to having my doctor do benchmark antibody and liver panel tests, I had a Schirmers test done as a benchmark also. I measured at 12 & 14. I used to be a "5" in both eyes two years ago -- but have been taking high doses of fish oil, BioTears, NAC and other supplements.

Again I'm taking LDN to stop disease progression. And I think six months is considered a good trial for LDN -- and I was only on it for 19 days. So when I restart LDN and am able to be on it for six months maybe I'll have more improvement with my dry eyes....but who knows for sure ???

Bottom line: You have to be willing to be a "guinea pig" when you try this therapy -- there are many unknowns.

[dianat]

Yours is a very interesting story, Jannz. Thanks for sharing.

My aunt has Hoshimotos disease, so I do realize that there are many factors that can throw off the treatment of thyroid disease. It will be interesting to see how this all unfolds for you. In don't have an autoimmune disorder that I know of, but am excited at the possibilities LDN treatment.

Feel free to add to your "diary" here as you proceed. It will be valuable for you and for us.

[Lucy]

You have to be willing to be a "guinea pig" when you try this therapy -- there are many unknowns

I think anyone with autoimmune is actually a guineau pig! I appreciate your writing about your experience. I've been dx with Sjogrens about a year and half and low thyroid about 6 months ago. I don't have vitiligo, but how about psoraisis? I just had that dx also.

I'm going to ask my rheumatologist about LDN next time I see her. Please keep us posted.

Lucy

[jannz]

psoraisis is listed on the ldn site

Hi Lucy...

You know I agree with you about anybody who has autoimmune disease is already a 'guinea pig". Since there's no cure for autoimmune... and all they do is treat symptoms... try this... try that... yea -- it really is like we're all guinea pigs.

RE: Psoraisis

It's listed on the ldn org website. I doubt your rhuemy has heard of ldn before though. You'll probably have to educate him / her.

Best wishes...
Jann

[painintheeye]

update at day 60 with LDN therapy

Hi everyone,

i thought i will give whoever is interested an update at my 2 months mark using LDN therapy for sjogren related dry eye/mouth symptoms.

i have resumed some of my supplement regimen:
2xflaxseed oil/day
10 chollera tablets/day
1 vitamin B/day
4.5mg liquid DIY LDN per night between 11:30-1:00AM
no panoptx is needed inside or out.

symptoms updates:

dry mouth:
my salivary gland function is still good. i don't experience any dryness anymore. no dry coughs either.

dry eye:
my dry eye symptoms have maybe improved slightly, i am not really sure because it still fluctuates. i am usually more comfortable in the daytime and getting gritty, sore and stingy as the day progresses and especially so in my left (bad) eye. however, i don't have severe painful eye days where ice or pain medicine is needed. at most, my stingy or grittiness gets so IRRITATING that i may consider using some drops but i have yet to use drops once in the 2nd month on LDN. i COULD use drops but i refrain from using it because i always find it worsens my symptoms. that's just an observation i made from my own past experience.

side effects:
none that i can notice. i don't feel fatique in the day but i still need to sleep about 10 hours per night. i've had some stomache discomfort/mild diarrahea but i am not sure if it's LDN related. no cold or flu so far (knock on wood!)

i am still hopeful about LDN and will continue to use it to STOP any progression.

will keep updating my progress with LDN and please ask if you have any questions.

Cheers,
Chris C

[sazy123]

Hi everyone,

i thought i will give whoever is interested an update at my 2 months mark using LDN therapy for sjogren related dry eye/mouth symptoms.

i have resumed some of my supplement regimen:
2xflaxseed oil/day
10 chollera tablets/day
1 vitamin B/day
4.5mg liquid DIY LDN per night between 11:30-1:00AM
no panoptx is needed inside or out.

symptoms updates:

dry mouth:
my salivary gland function is still good. i don't experience any dryness anymore. no dry coughs either.

dry eye:
my dry eye symptoms have maybe improved slightly, i am not really sure because it still fluctuates. i am usually more comfortable in the daytime and getting gritty, sore and stingy as the day progresses and especially so in my left (bad) eye. however, i don't have severe painful eye days where ice or pain medicine is needed. at most, my stingy or grittiness gets so IRRITATING that i may consider using some drops but i have yet to use drops once in the 2nd month on LDN. i COULD use drops but i refrain from using it because i always find it worsens my symptoms. that's just an observation i made from my own past experience.

side effects:
none that i can notice. i don't feel fatique in the day but i still need to sleep about 10 hours per night. i've had some stomache discomfort/mild diarrahea but i am not sure if it's LDN related. no cold or flu so far (knock on wood!)

i am still hopeful about LDN and will continue to use it to STOP any progression.

will keep updating my progress with LDN and please ask if you have any questions.

Cheers,
Chris C

Thanks for the update chris,

I have everything sitting in my room, havent tried it yet coz i wanted to see what the p cream was doing i started using it more above eyelids and it helped more, before i was only using it on lid margins.

I dont actualy think it will help now coz i dont think an actual autoimmune disease is causing the dry eye, but i do think an autoimmune reaction is occurring in response to ocular rosacea becoz thats what happens in facial rosacea. but i will try it soon and let you know. I got the distilled water in the end, cost me £15 though

[ringo]

thank you all for this amazing information

Thank you so much for posting this immensely valuable information! I will try this medication as soon as possible....

i think it might help anyone with dry eye, even those without systemic autoimmuune disease, as there is always an autoimmune component in the inflammation in dry eye.

Thank you again! you might have very well provided the solution to so many people who are suffering and losing hope