low dose naltrexone

[painintheeye]

dear friends,

i have sudden severe dry eye almost 8 months ago. and i started showing dry mouth for the past month. although i tested negative for sjogren but i think it is where it is taking me. like all of you i search and search for solutions and even went to England for a scleral len fitting which failed terribly because the lens is a pre-fab one. and now i am trying out this therapy which has appeared to work wonders for people with autoimmune diseases and cancers too. but i must say that individual results may differ so please research as much as you can and ask as many questions as you can then to make an educated decision for yourself as i've done for myself.

please log on to www.lowdosenaltrexone.org for more information. i have personally being in communication with several sjogren sufferers and one of them after being diagnosed at 0 schirmmer test a year ago to become normal today in a matter of 7 days. another girl just posted today that her schirmmer test last september was 5 and 9 and today it is in the high 10's so she cancelled her puntun plug procedure. this LDN therapy is inexpensive and with very very little side effects. i first heard of it on sjogren's forum but there were not a lot of people who tried it. many put it aside. but i was later given some names to contact who actually tried it and not only their dry eye/dry mouth improved, a lot of the other sjogren related syndrome also improved. and the most important thing is that LDN seems to halt or stop progression. currently the most users of LDN are people with MS and their testimonies are just incredible.

i sort of hesitated to write this publically because i myself has only been on it for 2 days and i know i need more time to prove its effectiveness. but i just felt the need to let all of you sjogren or possible sjogren patients that there are other possibilities that may prove more effective and less harming to our already compromised immune system and perhaps by using it as early as possible may give you a headstart on healing.

i now belong to a yahoo LDN group and please join in to get more information for yourself.

i was terrified of the thought of having sjogren's and the grim prospect of its possible progressions. i know some may not agree with me for telling you this but i at least feel it's worthy of a try when considering there're no effective medication to treat or let alone cure this. and i am not going to sit around waiting for my saliva and eyes to dry up so my doctor can finally declare me as having SS.

if you need anything else, please feel free to PM or email me. I will be glad to share what I know.

[soxboy]

ldn

I actually met one of the gentlemen responsible for the grass roots effort that has been aimed towards LDN. He spoke with me for about 2 hours. I work in the same company as him. He suffered from MS and begged his doctor for the LDN starting in 2001. He told me many many stories of how great this stuff is, and explained that there are no known side effects. He sold me on it and will be asking my doctor for it. Please keep in touch on your progress with it. He told me many stories about the difference 3 days on this medicine caused. Good luck

[Brighteyes]

painintheeye,

Thanks! Keep us updated on your progress.

p.s. I think you should post this as a new thread

[Brighteyes]

I got examined and 19 different fungal infection of the intestine (? I'm unsure about the translation?) were found and now I have to fight against them which means taking natural medicine and I'm not allowed to eat sugar (really hard).

stephgurl1986,

I am very interested in learning more about your experience. How did you go about getting tested for internal fungal infections (what kind of doctor and what kind of tests did they run)? What kinds of infections were found? What did the doctor say with regards to how these infections may or may not be affecting your eyes?. Thanks!

[Rojzen]

hugely grateful

Painintheeye: Thank you so much for alerting us to LDN. . .A quick look at the research pending on this, in the autoimmune realm, conveys that LDN is going to become a very important tool, in many cases. Since so many of us, here, suffer from related (or unrelated) immune system problems, it seems essential that those of us in that position begin to inquire about LDN with our docs.. .

Those here who have LASIK-induced DES may even want to follow LDN. . .Who is to say that some immune-mediated vulnerability may not play some role in determining which of the patients who get LASIK go on to develop serious DES. . .?

Anyway, my curiosity is now sparked. . .Many, many thanks, and please give us all the joy of reporting good results, in your case, as soon as they are in!

[elaine]

naltrexone

What dosage are you on? I'd like to try it. Maybe it will cure my addictions, too

[painintheeye]

dosage

hi,

i was afraid that i may be accused of pushing for "snake oil" on the web. wow, thanks for the positive response.

i am on the maximum dosage of 4.5mg. it is said that unless you have MS which requires to start with 1.5mg because of some initially worsening effects, all other diseases or cancer patients can go right ahead on the 4.5mg. except the first night i experienced a little bit insomnia but the next 2 nights were really good, i had really deep sleep.
for Rojzen:
i understand you have fibromyalgia? there are a lot of people who are bettered with LDN. you should join the yahoo LDN group to find out more. but my take is that the earlier you are on LDN the better chance of healing will be seen. that's my 2cents. btw, i was also on restasis for almost 7 months and i stopped using it the day i started LDN as i think it will be contraindicated with LDN. I asked Dr. G and he agrees that I should not use it. i don't want to report too much yet as it's only been my 3 day but when i seen something definitive and longer lasting, i certainly will share it with all of you. but please research for yourselves because it has proven to be so effective for others with different AI /cancer diseases. with sjogren's, my primary goal is to STOP progression as sjogren's bring on so many other AI diseases and if on the way i am able to receive symptoms improvement or complete remission, i will thank God for his mercy.

Chris C

[Toril]

I did a google search on LDN, and....I found a really good Norwegian site about the treatment made by two MS patients!!!! That was a very nice surprise...I didn't think there were any interest about this subject in Norway. So...for other Norwegian members or members from other Nordic countries that have an interest of it, the address is www.ldn.no

Greetings, Toril

[Rojzen]

special thanks

Thank you so much, Painintheeye, for remembering my particular affliction. . .I did indeed spot, on the web site you referenced, successful applications of LDN in fibromyalgia, and I have scheduled a visit to the internist soon, and will explore LDN with her, for sure. . .It will probably take years before I complete all the referrals and rheumatological workups that could lead to an LDN Rx (my fibro diagnosis was 9+ years ago, and I've not seen a rheumatologist since), but I will not give up. . .These days, the newly touted drug for fibro is Lyrica, which, I believe, is merely an anticonvulsant with neurogenic pain-suppressing properties, like Neurontin (I may be off on that). . .but clearly, Lyrica does not aim at treating the cause of autoimmune disease, the way LDN does. . .

I have a good feeling about your course on LDN, and predict that it will arrest your disease process. . .A propos, Sjogren's can sometimes be misdiagnosed, and there doesn't appear to be a consensus on how to confirm that diagnosis. . .Salivary gland biopsy, for infiltrates, used to be the trend, but I sense that inflammatory conditions of the salivaries (and even lacrimals) can come and go. . .When I first came down with fibro and severe dry eye, I had severe dry mouth, as well, and had to take Salagen. . .My Sjogren's antibodies were low, but positive. . .The dry mouth been gone, now, for 9 years, however,. . .and to this day, I have one medical record that describes me as a Sjogren's patient, and many other that say I have no autoimmune disorder at all. . .

This vagueness helps me lots. . .It makes me realize that we each have some unique set of challenges, which would seem greatly to expand possibilities of cure/remission, in any given case. . .

Onward . . .

[sazy123]

Hi painintheeye, this is very interesting about this LDN. I have a reumatologist appointment and if there are no known symptoms i will try and get it.

Have you heard of it helping with MGD?? as you know i have normal aqueous function. Due to this I doubt sorjorens is my diagnoses probably more like fibro or rosacea- which i believe is a type of autoimmune.

Have you got an update on LDN, did it help your eye symptoms?

tcx

[Toril]

Painintheeye: Merry Christmas! How does it go with your treatment with LDN? I'm very curious.

Greetings from Toril

[painintheeye]

one month after LDN therapy

Hi, i hope everyone had a wonderful christmas holiday and btw, happy new year to you all too.

during the past month, i have received several PMs asking me about how i am doing and here's my one month progress report for those who may be interested in my quest for recovery.

i will just give you a brief background of where i was and what regimen i was on and also my tests results prior to starting LDN:

for eyes:
biotears - 2x2/day
flaxseed oil - 2/day
avocado oil - 4/day
lutein - 1/day
B complex - 1/day
bilberry extract - 1/day
borage oil - 1/day
lower puntum plugged
restasis - 3x/day for seven months upto the day of taking LDN

i don't have specific schirmmer score done but according to my ophthamologist, its very "DRY".

i have 2 pairs of panoptx which i use when i venture outdoors, in movie theatres, airplanes, etc.etc. where A/C exists

with restasis after 7 months, my eyes are sometimes more tolerable but sometimes require tylenol and ice packs to kill the eye pain. but i don't use too many drops because i don't need it as much and i think it may wash away my natural tear film. if i use, i use dwelle, dakrina.

i use dwelle at night with an airplane sleep mask and it will relieve me for the night.


for dry mouth:
my mouth became dry about 2.5 months ago. i am not bone dry but it is dry enough to be uncomfortable and i started to have dry cough in the day and night.

my sialoscintigraphy test (salivary gland function) results is:
1) impaired radiotracer uptake in parotid glands.
2) decreased excretory function after lemon juice stimulation
3) the EF of the left parotid, right parotid, left submandibular and right submandibular glands were 43%, 56%, 39% and 33% respectively, (normal limits: 66-75%, 67-74%, 44-54%, 45-54%, respectively)
i did not do a lip biopsy because i am negative on sjogren blood test and i just didn't think my lip biopsy would be positive yet unless my dry mouth had worsen more.

My LDN regimen:
I buy Naltrexone tablets from internet pharmacies recommended by www.lowdosenaltrexone.org. i DIY mine by taking 1 50mg tablet and mix it with 50ml distilled water and draw out 4.5mg each night using a needleless syringe and take it between 11pm -2am. i haven't found a pattern regarding the LDN taking time yet and i have not experimented as to what dosage would be most ideal for me. i just go for the highest dosage as it has not given me any ill effects.

My LDN experience thus far:

Dry Mouth:

since i only had dry mouth symptom for over a month before I started LDN so i figure, i should probably have better chance of reversing the dryness sooner.
After taking LDN for a week, I felt my saliva flowing again on the 8th day. It has been normal since then so I can say i have pretty much regained my salivary function and that LDN works to relief my dry mouth. although i have not gotten another salivary test but it is very obvious that i don't need to anymore because i no longer experience any dryness, my tongue is shiny covered with saliva and best of all , i don't have any dry coughs. i used to wear a surgical mask when i sleep to prevent any dry air from entering my throat causing me to cough during sleep and now i don't need to anymore.

Dry Eyes:

well, the reason that i decided to wait for a month before i report back is because, my eyes felt really GOOD immediately after i started LDN. If i had reported then, i would have said my eyes improved up to 90%. I did have good eyes relief for a few weeks during which i was able to do without any drops (day/night), no goggles, no eye mask. i was fine walking in low temperature windy weather, in a/C subways and airplanes (for 3.5hr flights), heated hotel rooms, etc. I was mostly fine. at most i had only slight grittiness and foreign object sensation but NO STINGING/BURNING PAIN. i was nearly normal again. i was very optimistic. however, after one full month, i would say my dry eye improvement is dynamic. it does fluctuate from somewhat normal to grittiness, and on rare occasions where it borders on having some mild stinging pain. so i don't know exactly how to quantify my improvement. all i can say is that my eyes look good. i see a nice shiny liquidy film over my eyes and i can see tears gather on the lower lids. if i really want to quantify it, i would say that i AM doing BETTER with LDN than with Restasis. I still don't need goggles but on worse days, i would use some drops. and drops are a bit more effective for me now due to the fact that I have more moisture than i did before so the drop relief is more effective and longer lasting.

LDN Side Effects:

i did not and do not experience much side effects. i sleep quite good after the first night. mind you, the first night after i took the LDN dosage, i can literally feel some chemical reaction going on inside my body. it's weird but you feel like something is working inside you. i do need to sleep MORE, usually between 8-10 hours. good thing i don't need to work otherwise, i don't know how can anybody do it. after one month, i do find my need to sleep is less so. i am not sleeping as DEEP as i was and i can probably do away with 7-8 now. once i get up, i don't really need a nap in the afternoon so i am not fatique during the day anymore. i feel my body is stronger. for last 18 months, i was battling with 2x bronchitis and few minor colds. i was taking medication and antibiotics non-stop. but i feel i have more energy and i feel physically strong to combat any diseases. i think it's just a betterment in overall wellness. you may say it's placebo but i feel healthier these days.

Summary over one month?

i am determined to stick to LDN as i am using it to halt SS progressions. i am totally bought into the idea that i need to build up my immune system instead of suppressing it. it is almost like a miracle for me to experience relief for my dry mouth because there's no known medication that could have done that for me. and whether i will continue to see symptom relief for my dry eyes? i don't know. but if i do, it's God's mercy. I am very grateful for finding LDN because i feel a lot happier and "normal" again. i am not as frightened of a future with SS. I am hoping that given a few more months, i will be able to put my SS in complete remission. If not, at least, it won't progress beyong the dry eyes.

for anyone who may be interested, my suggestion is still to do research and ask questions. i also know some people who may have had not much dryness relief due to they've had these SS symptoms for a long time. Nobody knows exactly who will or will not benefit. you will have to try it yourself to see if it's worth taking. the treatment is very affordable and easy to administer. i am available for emails or PM. should you have anything that i may be able to answer, please feel free. there are actually a few of us SSers, who are just at the starting point with LDN so maybe we can all share our experiences with the rest of you.

got to go. sorry for the long message but i think you will appreciate the detail.

best of luck to everyone of us because we all deserve some relief.
regards, chris c

[sazy123]

Hi chris thanks for your report, i have sent you a pm, do you need a rx from these online pharmacies?

[stephgurl1986]

wow, this really sounds amazing. I think I should give this a try in the future! Thanks for your long statement!!!

[painintheeye]

prescription for LDN

hi all,

i believe i am the ONLY person in my country that is currently using LDN so getting my rhumi to buy into LDN is quite unlikely. I was able to order from internet pharmacies recommended from the site without prescription. most of these sites will either not require a prescription or provide an on-line pharmacist to write you a script after you answer some online survey which is no problem at all. you just say you need naltrexone for LDN therapy and usually that will do. the drugs are usually sent from overseas countries like India or Spain or maybe other countries that does not require prescriptions. but if you check the LDN website, there is a lady called Crystal who is using LDN for MS does maintain a list of doctors that are well versed in LDN and are writing prescriptions for. since i couldn't get a prescription i was not able to get it compounded into capsules. if i could, i would much rather take the capsule form especially when you need to travel because the liquid dosage needs to be refrigerated.

BTW, i forgot to mention that i stopped ALL supplements for the last week now and i intend to stay off to see what effect it may have on my eyes.

another observation that i am not sure has anything to do with my current eye situation is that i was using restasis for 7 months as it is a immunosuppressant that kills off t-cells. other people who have seen good results or have complete relief did not use restasis. i don't know if restasis is the reason why i am not seeing quicker, better relief? so many questions but no way of knowing. anyway, i hope i may see gradual improvement over the next few months. heck, i gave restasis 7 months already, why wouldn't i give LDN the same amount of time? wish me luck.

chris c