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Thread: My Low Dose Naltrexone Journey (so far)

  1. #401
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    Hey hey, thx for the messages. Its a bummer but what are you gonna do. Of course my skin (seb derm) and flushing is at an all time low. Its like Im flaring up left and without actually knowing why... Im back on Propranolol again and Im taking Tumeric regularly too. Even though my Rosacea is neurogenic it might help my Seb Derm even if its just a bit, together with a anti-inflammatory diet.
    The capsules I wanted from my Doc are 1.0 and 1.5mg LDN. The derm first said 1.5mg only and I could go straight to 3 after that, I told him thats not the way I want it, slowly. He agreed and said I could open the capsule and let it sit on my tongue for a minute before swallowing? Anyone do that? I guess it works? One hour before bed he added.
    When I start LDN I will write down each day too. Even now I should do it, as it really helps tracking my feelings.

    Day by day!

    Angela, I have to say, reading back old posts from us, your symptoms match mine even more now. The "acid" feeling, was that Rosacea only? Or did you maybe had some sort of eczema? Do you sweat more now still with LDN? If so where?
    Last edited by opare; 11th July 2019 at 07:22 PM.

  2. #402
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    Quote Originally Posted by Fiugs View Post
    It must be so disappointing for you after waiting so long for your appt. but, dear Opare, try to stay strong and positive... you know itís coming and if you are as fortunate as many of us here have been it may help you within a few days of taking it. Other drugs would require you to take them for many weeks or months before you get an improvement.

    Perhaps you have decided to take Oracea now.

    I wonder also if you have tried CBD oil? I took it for a while and it seemed to help the face pain a little ... it also helped me feel a little more calm about my face pain and so on...

    Some people take CBD along with LDN... at least the clinic in Glasgow that compounds LDN for some of us here also sells good quality CBD. Itís not hard to get hold of these days. Better still... take a trip to The Netherlands and get hold of the Ďleadedí version!!

    Take care...
    I could get CBD oil. Its quite expensive but legal here. What % did you take, or recommend? How many drops? AM or PM?

    The derm wasnt having it with Oracea, so that I do not take atm. He could give Retinol + Vit A, but that would be more for my seb derm side.

  3. #403
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    Quote Originally Posted by opare View Post
    Hey hey, thx for the messages. Its a bummer but what are you gonna do. Of course my skin (seb derm) and flushing is at an all time low. Its like Im flaring up left and without actually knowing why... Im back on Propranolol again and Im taking Tumeric regularly too. Even though my Rosacea is neurogenic it might help my Seb Derm even if its just a bit, together with a anti-inflammatory diet.
    The capsules I wanted from my Doc are 1.0 and 1.5mg LDN. The derm first said 1.5mg only and I could go straight to 3 after that, I told him thats not the way I want it, slowly. He agreed and said I could open the capsule and let it sit on my tongue for a minute before swallowing? Anyone do that? I guess it works? One hour before bed he added.
    When I start LDN I will write down each day too. Even now I should do it, as it really helps tracking my feelings.

    Day by day!

    Angela, I have to say, reading back old posts from us, your symptoms match mine even more now. The "acid" feeling, was that Rosacea only? Or did you maybe had some sort of eczema? Do you sweat more now still with LDN? If so where?

    Opare, Iím happy that you will finally get the LDN. I just wish he would prescribe the 1.5 mg and the .5 mg because then you can always titrate it yourself in case 2.5 mg is too high for you. The acid burning was not plain old rosacea. It was the neurogenic rosacea and of a combination of phenotype 1. I get some occasional dermatitis around the nasal labial fold areas but not often. Interestingly, my skin is super soft but as a base level itís definitely pink and sometimes bright pink. Iím doing ok on LDN but not back yet to that sweet spot I had early on. Maybe when it gets cooler her it will be more noticeable. It definitely is better but not where I want or need to be. I do perspire more. Not my face yet though. Mainly under the lady parts in front and my back.

    Angela

  4. #404
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    Quote Originally Posted by Ange4 View Post
    Opare, Iím happy that you will finally get the LDN. I just wish he would prescribe the 1.5 mg and the .5 mg because then you can always titrate it yourself in case 2.5 mg is too high for you. The acid burning was not plain old rosacea. It was the neurogenic rosacea and of a combination of phenotype 1. I get some occasional dermatitis around the nasal labial fold areas but not often. Interestingly, my skin is super soft but as a base level itís definitely pink and sometimes bright pink. Iím doing ok on LDN but not back yet to that sweet spot I had early on. Maybe when it gets cooler her it will be more noticeable. It definitely is better but not where I want or need to be. I do perspire more. Not my face yet though. Mainly under the lady parts in front and my back.

    Angela
    Sorry guys but under the lady parts in front just sounded weird. Under the breasts. There, sounds better.

  5. #405
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    Quote Originally Posted by opare View Post
    I could get CBD oil. Its quite expensive but legal here. What % did you take, or recommend? How many drops? AM or PM?

    The derm wasnt having it with Oracea, so that I do not take atm. He could give Retinol + Vit A, but that would be more for my seb derm side.
    I think everyone is different with quantities of CBD. Rather like LDN,it seems :-) most people start at a low dose and try it for a week or so and then move up gradually if necessary.

    But donít look at the % of CBD as it doesnít really tell you what you need to know. Good quality CBD oil will tell you how many mg of active CBD ingredients you get per dose (usually stated per x amount of drops)

    Itís probably just as well you arenít starting Oracea right now, it will give you a better idea of what is working for you. With CBD you should get a little relief within 30 mins IF itís going to work. I think if your rosacea is neurogenic it should help a bit. I had those acid face symptoms pre LDN and CBD did seem to help a bit.

    If you have what seems like an inexplicable flare up now It could the stress.... Horrible, viscous circle.. many of us have been there, you have my sympathy, CBD should help a bit with that too. It did relax me a little and it helped me sleep well. I would have co tinted with it but it was too expensive along with the other things I was doing for my face and I had to make some hard decisions what to keep doing and wha I had to let go of... Iím self employed and my income has reduced by 80% in the last three years due to my condition. Yep.. itís all a bummer, as you say. But eventually we are all heading in the right direction... we have to keep remembering that.

    Going even more off topic. I see that Kiehlís are now selling a topical CBD oil facial serum. I wonder what it might be like...? I havenít looked at the ingredients...

  6. #406
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    Quote Originally Posted by Fiugs View Post
    Hi there.

    Golly. I have no idea how many mgs are in the bottle.Dicksons would need to tell you that.

    If you're wondering how long it will last you, all I can tell you is I have been reducing my dose by .5mg a week since I started on the drops.. so for the first week I was taking 8 drops (4 mg) nightly.. 2nd week 7 drops nightly.. etc etc .. as of tomorrow I will be down to 4 drops (2mg) nightly. So that means at that gradually reducing dose (i.e. so far Ive been taking much more than you will be using) Ive been on the drops for one month so far and I reckon I'm about half way through the bottle.

    So by my expert mathematical reckoning, at 2 mgs (4 drops) nightly ithese drops should last us - a while...

    Sorry I cant be more precise!

    Hope you like it though

    Lots of love X
    Bless you!

    Not started on it yet however weather has been crazy warm here in the UK (and continues to be) and things are GOOD!!!

    Hope you are doing well too!

    Judy
    SUFFER FROM NEUROPATHIC ROSACEA & OCULAR ROSACEA.


    *Vit D3,Theratears Omega 3.



    *LDN since October 2018.

    *REN skincare range. TARTE cosmetics.

    *Tried Clonidine, Moxonidine & Atenolol (None being taken at present ).

    *Yearly IPL treatments until 2009.

    * RLT Journey!" (Sept 09) **Using Britebox Revive..(Stopped ).

    * Use Optimel & Ilast cream for MGD Ocular rosacea.

    History of Hyperthyroidism (Graves) Lichen Planus (oral)
    PROUD TO BE DIFFERENT






    .

  7. #407
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    Quote Originally Posted by Judworth View Post
    Bless you!

    Not started on it yet however weather has been crazy warm here in the UK (and continues to be) and things are GOOD!!!

    Hope you are doing well too!

    Judy
    Itís 24 C here today Iím coping thanks to the light breeze and sitting in the shade. Odd that if I was in a 24 deg centrally heated environment I would be on fire, but for some reason I have always seemed to cope better in higher temps that are provided by the sun.. weird.

    This is my first day following my first nightly dose of 2mg, so early days yet to see if less than 50% of what I have been taking for the past year makes a difference. I am feeling fairly in the middle of the road about it, so neither optimistic nor pessimistic.

    Will obviously post here if I see any improvements after a while on this lower dose. For sure I have experienced no backtracking, in terms of improvements Iíve had over the past year, as Iíve been reducing my dose gradually over the past few weeks

    All the best x

  8. #408
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    Quote Originally Posted by Fiugs View Post
    Itís 24 C here today Iím coping thanks to the light breeze and sitting in the shade. Odd that if I was in a 24 deg centrally heated environment I would be on fire, but for some reason I have always seemed to cope better in higher temps that are provided by the sun.. weird.

    This is my first day following my first nightly dose of 2mg, so early days yet to see if less than 50% of what I have been taking for the past year makes a difference. I am feeling fairly in the middle of the road about it, so neither optimistic nor pessimistic.

    Will obviously post here if I see any improvements after a while on this lower dose. For sure I have experienced no backtracking, in terms of improvements Iíve had over the past year, as Iíve been reducing my dose gradually over the past few weeks

    All the best x
    Interesting, 2mg appears to be my optimum dose, I too can cope with sun-heat (if shaded) but over-warm homes not so good!!!!! (perhaps it's natural v artificial??)

    I cannot thank you enough for introducing me to LDN, it has literally changed my life.

    Hugs x
    SUFFER FROM NEUROPATHIC ROSACEA & OCULAR ROSACEA.


    *Vit D3,Theratears Omega 3.



    *LDN since October 2018.

    *REN skincare range. TARTE cosmetics.

    *Tried Clonidine, Moxonidine & Atenolol (None being taken at present ).

    *Yearly IPL treatments until 2009.

    * RLT Journey!" (Sept 09) **Using Britebox Revive..(Stopped ).

    * Use Optimel & Ilast cream for MGD Ocular rosacea.

    History of Hyperthyroidism (Graves) Lichen Planus (oral)
    PROUD TO BE DIFFERENT






    .

  9. #409
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    Quote Originally Posted by Judworth View Post
    Interesting, 2mg appears to be my optimum dose, I too can cope with sun-heat (if shaded) but over-warm homes not so good!!!!! (perhaps it's natural v artificial??)

    I cannot thank you enough for introducing me to LDN, it has literally changed my life.

    Hugs x
    You have no idea how much that means to me (or maybe you do!)

    xxx

  10. #410
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    Hi, thanks to Fiugs Iíve started to look into this treatment.
    As I have IBD and rosacea and skin hypersensitivity not to mention other problems.
    My question is has anyone managed to get a UK Doctor to prescribe this ?
    And what are the recommended dosage. I know it can be used for chrons
    has anyone had a good effect gut wise?
    And does it help with demodex?

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