Author Topic: 2nd time trying ldn. this time 1.5mg. thru me straight into flarehelp!  (Read 1362 times)

valene2009

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i started 3mg low dose naltrexone about a month ago. 4 days. awful. sick. couldnt sleep all night. etc... part of it.. but it also dried me out so bad-esp my pore eyes.

i started the 1.5mg last night -actually 4am when i woke up and remembered to take it.. i feel like the flu plus 100 times worse.. i slept a few hours today.. achy. eyes killing me.. i dont know if i should keep trying or not..i have met 2 people it helped with dry eye but only 2.   everyone says it takes time to get used to.. not sure what to do..

last time i tried taking it at night (like sugggested) for 2 nights-then i switched to days and i felt worse...

any thoughts or opinions?? i know you cant tell me what to do i just need some friendly encouragment on how to decide if this is helping or hurting me???
thanks
valene. :)

anita

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I think you answered it yourself.

The only thing I can do is hope your feel better.  I have not heard/read that it's supposed to make you feel worse before it helps.  Are you still taking the Plaquenil?
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

eyeamdry

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Valene, what did your dr say?  Did you ask to be given this med?  Or was it your dr's idea?  I'm just asking so we have a little more info here. 

That has been talked about on the board a little bit, but more a few years ago.  I'm not sure, but I don't remember any real shouts about it making someone feel much better.  Did you look up the background of people who have used this?

I hope you can continue to take it and get some relief. I am one who thinks most things such as something a little off the beaten path likely doesn't work, or all of us would be there.  On the other hand I see a few people are helped sometimes by something the rest of us get no help from.

I've been waiting for a cure for dry eye for over 12 years since my Lasik doc slashed my eyes.  The Sjogrens came a few years later to add insult to injury.  Over 12 years, Ive heard of many "dry eye fixes, cures, almost cures, etc."  I have tried most of them and I can say that I'm on drops every hour and my night goggles, daytime goggles w/RX. etc.  A cure for dry eye doesn't exist.  We have to use what we already know, darn it.  Let us know about Naltrexene.  Lucy

valene2009

  • Guest
hi there

of course it was my idea and my doc is very openminded... i skipped it last night since i had an eye exam(optometrist) today-which i missed since my left eye is killing me...
anyway i was hoping i could tolerate the ldn... everyone on the "board"-support site-is telling me to look up my own info, or that i have adrenal fatigue (which i probably do)

lucy i kind of agree iwth you-if it helped that much everyone would be on it..

just not sure if i should try another night?  i could call my doc but i know he would say its my call-i either keep trying it or stop it...:(

valene2009

  • Guest
just spoke with the pharmacist who made my ldn-he is the main person who compounds it,. anyway, he said i am taking such a low dose he doesnt see how it could have caused a flare...with sjogrens we never know where flares come from

anyway, i may 1/2 the dose tonight and see... he said he does have people on it iwth sjogrens and it helps with the dryness... once you get up to a certain dose you stop the plaquenil-that is ideal at least...

i will tyry again tonight..