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My Low Dose Naltrexone Journey (so far)

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  • My Low Dose Naltrexone Journey (so far)

    Background

    Subtype 1 rosacea, which started dramatically two years ago, with a series of major, painful flushes that could last for about 12 hours.

    As far as I can tell, My facial flushing is triggered by:
    - ambient temps above 18C
    - coming into even slightly warm places from the cold
    - body heat due to excercise, warm clothing etc
    - stress
    - sometimes also intense mental concentration
    - alcohol

    Also, My nose flushes and swells up when I eat warm food or drink warm drinks.

    I also get face pain (tingling and burning) mostly on one side. Sometimes it happens for a day or two after a bad flush, sometimes it seems to happen for no reason at all.

    I have permanently rosy cheeks and did have lots of visible caps, but they have been mostly taken out by 9 IPLs over the last 18 months. This also reduced the severity and duration of my flushes by quite a lot. Prior to IPLs I would flush several times every day and often for no apparent reason whatsoever.

    I don’t get Papules and pustules like so many suffer with, but I do tend to wake up most mornings with an occasional tiny red spot or three (not sure if that constitutes P&Ps), they tend to either completely disappear or reduce within a few hours, although there is often a flat red mark that can remain for several days - my wee theory about that is that the spot healing takes longer because I get no exposure to sunlight these days.

    My LDN story so far

    I started just over a month ago... on Friday the 13th April

    When I contacted the LDN Trust in the UK, to enquire about LDN and rosacea, they said that “we have a few people with rosacea take it and they say that it has helped”.

    Only some docs prescribe LDN. The trust gave me details of how to arrange a phone consultation. I had to first provide proof of my diagnosis (either a doc or derm letter or a prescription was sufficient). The doc said she wasn’t sure if LDN would help, but it was worth a try.i think she especially thought that because I’ve tioned I also have very slight raynauds syndrome and very occasional eczema, both of which are know to be helped by LDN.

    My first 3 month supply of LDN arrived in less than a week after the consultation.

    Cost
    I’m in Scotland, where Some NHS GPS will write a (free) prescription for LDN, but I’m a bit fed up with going to my GP just now, so I decided to just pay till I hopefully get results, then I would go to my doc and see if she would prescribe.

    The initial phone consultation lasted about 20 mins (they have no time limit and like to take as long as they need - cost £35

    Cost of LDN only approx £20 per month!

    Dose
    Im following instructions to the letter... for the first two weeks I took 1.5 mg each night and I have been slowly building up the dose by 0.5 each week. This week I’m up to 3 mg and I go up to 3.5 in 2 days.. I stop increasing the dose when I get to 4.5 mg, after which I have another consultation to review how things are going and decide what to do next.

    Side effects
    it seems that some have them for the first week or so and some don’t. The internet is full of side effect stories, but I tend to assume that tends not to be representative, as people are more likely to post frequently on forums etc when they’re having trouble and need support. The most common side effects seems to be very vivid dreams and/or poor sleep for the first week or two.

    As far as I can tell, I’ve had no side effects so far... I didn’t sleep too well for the first three nights, but to be honest I think that was me and not the LDN - I think I couldn’t sleep because I was so busy anticipating side effects! I was almost disappointed I didn’t get vivid dreams..

    Outcome so far
    - I am sleeping better than I have for many years
    - I have had no face pain whatsoever since day one of taking LDN. This is big for me.
    - I’ve had no eczema
    - also no raynauds... (although that may be down to warmer weather)
    - I need more time to know if it has - or will - help reduce flushing. Perhaps if the face pain / sensitivity goes the tendency to flush may reduce through time. I also think that I will need to continue to zap the caps and redness a bit more, in order to get rid of the excess infrastructure that makes flushing so easy. I can’t expect the LDN to do that.

    Caveat
    I also started taking propranolol 10 mg 3 times daily about a week after I started LDN. Not ideal from the POV of muddying the LDN trial, but I did it mainly because I finally got an appt with an NHS derm after waiting 4 months and I didn’t want to mess up the relationship on day 1 by saying I wasn’t going to take her recommendation because I was currently trying something else. I also really wanted all the help I could get as I was to be away on a business trip for a few weeks and would be in places that are warmer than I would wish.

    I will say that I don’t think the propranolol is helping - at least not at that dose. It might if I increased it, but I won’t do that whilst I’m trying the LDN and I may stop taking it in a month or so, to see if there’s any change.

    I’ll update here in a week or so...

    LDN info

    www.lowdosenaltrexone.org

    There are lots of good videos about LDN on YouTube but I have to say there’s nothing out there about LDN and rosacea, as far as I can see....
    Last edited by Fiugs; 16 May 2018, 06:51 PM.

  • #2
    Originally posted by Fiugs View Post
    Background

    Subtype 1 rosacea, which started dramatically two years ago, with a series of major, painful flushes that could last for about 12 hours.

    As far as I can tell, My facial flushing is triggered by:
    - ambient temps above 18C
    - coming into even slightly warm places from the cold
    - body heat due to excercise, warm clothing etc
    - stress
    - sometimes also intense mental concentration
    - alcohol

    Also, My nose flushes and swells up when I eat warm food or drink warm drinks.

    I also get face pain (tingling and burning) mostly on one side. Sometimes it happens for a day or two after a bad flush, sometimes it seems to happen for no reason at all.

    I have permanently rosy cheeks and did have lots of visible caps, but they have been mostly taken out by 9 IPLs over the last 18 months. This also reduced the severity and duration of my flushes by quite a lot. Prior to IPLs I would flush several times every day and often for no apparent reason whatsoever.

    I don’t get Papules and pustules like so many suffer with, but I do tend to wake up most mornings with an occasional tiny red spot or three (not sure if that constitutes P&Ps), they tend to either completely disappear or reduce within a few hours, although there is often a flat red mark that can remain for several days - my wee theory about that is that the spot healing takes longer because I get no exposure to sunlight these days.

    My LDN story so far

    I started just over a month ago... on Friday the 13th April

    When I contacted the LDN Trust in the UK, to enquire about LDN and rosacea, they said that “we have a few people with rosacea take it and they say that it has helped”.

    Only some docs prescribe LDN. The trust gave me details of how to arrange a phone consultation. I had to first provide proof of my diagnosis (either a doc or derm letter or a prescription was sufficient). The doc said she wasn’t sure if LDN would help, but it was worth a try.i think she especially thought that because I’ve tioned I also have very slight raynauds syndrome and very occasional eczema, both of which are know to be helped by LDN.

    My first 3 month supply of LDN arrived in less than a week after the consultation.

    Cost
    I’m in Scotland, where Some NHS GPS will write a (free) prescription for LDN, but I’m a bit fed up with going to my GP just now, so I decided to just pay till I hopefully get results, then I would go to my doc and see if she would prescribe.

    The initial phone consultation lasted about 20 mins (they have no time limit and like to take as long as they need - cost £35

    Cost of LDN only approx £20 per month!

    Dose
    Im following instructions to the letter... for the first two weeks I took 1.5 mg each night and I have been slowly building up the dose by 0.5 each week. This week I’m up to 3 mg and I go up to 3.5 in 2 days.. I stop increasing the dose when I get to 4.5 mg, after which I have another consultation to review how things are going and decide what to do next.

    Side effects
    it seems that some have them for the first week or so and some don’t. The internet is full of side effect stories, but I tend to assume that tends not to be representative, as people are more likely to post frequently on forums etc when they’re having trouble and need support. The most common side effects seems to be very vivid dreams and/or poor sleep for the first week or two.

    As far as I can tell, I’ve had no side effects so far... I didn’t sleep too well for the first three nights, but to be honest I think that was me and not the LDN - I think I couldn’t sleep because I was so busy anticipating side effects! I was almost disappointed I didn’t get vivid dreams..

    Outcome so far
    - I am sleeping better than I have for many years
    - I have had no face pain whatsoever since day one of taking LDN. This is big for me.
    - I’ve had no eczema
    - also no raynauds... (although that may be down to warmer weather)
    - I need more time to know if it has - or will - help reduce flushing. Perhaps if the face pain / sensitivity goes the tendency to flush may reduce through time. I also think that I will need to continue to zap the caps and redness a bit more, in order to get rid of the excess infrastructure that makes flushing so easy. I can’t expect the LDN to do that.

    Caveat
    I also started taking propranolol 10 mg 3 times daily about a week after I started LDN. Not ideal from the POV of muddying the LDN trial, but I did it mainly because I finally got an appt with an NHS derm after waiting 4 months and I didn’t want to mess up the relationship on day 1 by saying I wasn’t going to take her recommendation because I was currently trying something else. I also really wanted all the help I could get as I was to be away on a business trip for a few weeks and would be in places that are warmer than I would wish.

    I will say that I don’t think the propranolol is helping - at least not at that dose. It might if I increased it, but I won’t do that whilst I’m trying the LDN and I may stop taking it in a month or so, to see if there’s any change.

    I’ll update here in a week or so...

    LDN info

    www.lowdosenaltrexone.org

    There are lots of good videos about LDN on YouTube but I have to say there’s nothing out there about LDN and rosacea, as far as I can see....
    Fiugs - Thanks for sharing and your detailed post I'm very interested in trying this potentially for myself One of my dr's said I could try it later. I'll be checking for any updates! best wishes

    Comment


    • #3
      LDN Experience

      Hi Fiugs-

      Thanks for sharing your LDN notes. I started on 1mg of LDN in January, and upped it to 2mg in February. I’m contemplating going to 3mg, though my doc says lower is better despite the fact that LDN doses can go as high as 4.5 mg. I need to inquire further about this.

      LDN helps your immune system find better balance, without stimulating it. I do believe there is an immune component to this condition for some rosaceans.

      My observation so far is that LDN has helped with facial swelling. The only side effects I had were bizarre dreams for the first few weeks. Additionally, a few months after I got rosacea, I became very intolerant to chemical and fragrant smells. No idea if it’s related to rosacea, but LDN has helped with this as well.

      This drug is very old and very cheap, and has practically zero side effects aside from weird dreams. It’s worth trying if you can get a doctor to prescribe it. It apparently has really helped some people with a myriad of autoimmune conditions.

      Keep us posted and good luck!!

      Comment


      • #4
        Originally posted by sg321 View Post
        Hi Fiugs-

        Thanks for sharing your LDN notes. I started on 1mg of LDN in January, and upped it to 2mg in February. I’m contemplating going to 3mg, though my doc says lower is better despite the fact that LDN doses can go as high as 4.5 mg. I need to inquire further about this.

        LDN helps your immune system find better balance, without stimulating it. I do believe there is an immune component to this condition for some rosaceans.

        My observation so far is that LDN has helped with facial swelling. The only side effects I had were bizarre dreams for the first few weeks. Additionally, a few months after I got rosacea, I became very intolerant to chemical and fragrant smells. No idea if it’s related to rosacea, but LDN has helped with this as well.

        This drug is very old and very cheap, and has practically zero side effects aside from weird dreams. It’s worth trying if you can get a doctor to prescribe it. It apparently has really helped some people with a myriad of autoimmune conditions.

        Keep us posted and good luck!!
        I also seem to have developed an intolerance to chemical smells, in my case about a year into getting rosacea - How interesting!

        Yes, I’d heard that some MS sufferers work their way up to 4.5 mg daily, but then find they’re better to drop to 3mg. I’m hoping that might be the case for me too, as there are 3mg capsules available - much more convenient than the current liquid form in a syringe feeder!

        I think I forgot to mention in my original post that my nose flushing and swelling when I put any warm food or drink in my mouth has stopped. I don’t know if that’s the LDN or the propranolol tho... maybe it is the LDN, as the propranolol has certainly not helped in any other way at the current dose.

        I don’t get swelling elsewhere so I can’t say... great though that it’s helped for you with that!

        I kind of hope my rosacea has an autoimmune component, as that seems to be what LDN is best at helping with. I’m pretty sure there’s an element of chronic stress in my personal etiology and, as LDN is also known to help with that, I see that as another reason to give it a try.. I’ve certainly got way more stressed since getting rosacea.

        Also on the auto immune front, my ANA blood test showed weak positive... so not enough to qualify to see a rheumatologist, apparently, but certainly indicating that my immune system is up to mild shenanigans.

        Did you get any face pain/tingling/burning? And if so, did LDN help with that?

        It would be great to keep each other updated here from time to time... and maybe some others might give LDN a try too.

        By the way.... I did also hear somewhere that some people get almost instant results with LDN whereas others take several months, so I’m going to give it a good long shot.
        Last edited by Fiugs; 17 May 2018, 09:38 AM.

        Comment


        • #5
          I hope it continues to go well for you 2. Out of curiosity, did either of you try plaquenil (or another antimalarial)? And how it might compare ... I don't respond much to anti-inflammatories, NSAID's, or plaquenil (except with swelling, maybe) so I wonder how much benefit I could get from LDN perhaps. Still, it seems low-risk, potential high benefit - just wondering.

          Thanks!

          Comment


          • #6
            Yes, I do get some facial discomfort...stinging, burning, tingling, etc. This can happen even if I’m not flaring. It is one thing I have not been able to correlate with triggers. The discomfort is somewhat constant I guess. Not sure if LDN has helped this, maybe a little. My integrative medicine doc has suggested Gabapentin for the facial discomfort, however I haven’t tried it because 1.) I read on this forum it made someone worse, 2.) The discomfort isn’t ‘that bad’ but irs still annoying. My pain threshold is pretty high and 3.);My priority is to get the pink/red to go away.

            Interesting that your LDN is in liquid form. Mine is in capsules...

            As for the anti-malarial drugs, they are next on my list to try. I’ve read that the anti-malarials have helped some, but it’s very unclear to me what symptoms the drug treats. I wonder if they are more for those with demodex issues or if the people really had lupus and not rosacea? Do these drugs help those with redness/flushing?

            Comment


            • #7
              Originally posted by sg321 View Post
              As for the anti-malarial drugs, they are next on my list to try. I’ve read that the anti-malarials have helped some, but it’s very unclear to me what symptoms the drug treats. I wonder if they are more for those with demodex issues or if the people really had lupus and not rosacea? Do these drugs help those with redness/flushing?
              It's very hit or miss. The good thing though is I literally have no side effects from plaquenil (just have to get eye checks), so it's a low risk / high potential reward. Yes it can help a lot with flushing / redness, independent of lupus / demodex. Definitely worth a try imo

              Comment


              • #8
                Hi Lizzy,

                What are you currently taking and what is proving beneficial?

                Next on my list to ask the doc are Effexor, Clonidine, and Plaquenil. My biggest issues are redness + facial discomfort, and flushing related to heat/emotions. I’m not sure what to trial next.

                Thanks!

                Comment


                • #9
                  Originally posted by sg321 View Post
                  Hi Lizzy,

                  What are you currently taking and what is proving beneficial?

                  Next on my list to ask the doc are Effexor, Clonidine, and Plaquenil. My biggest issues are redness + facial discomfort, and flushing related to heat/emotions. I’m not sure what to trial next.

                  Thanks!
                  Hi sg -

                  I'm currently taking :

                  effexor 112.5 mg
                  plaquenil
                  mirtazapine 22.5 mg at night
                  amlodipine 0.625 x2 / day
                  botox every 3 months

                  The plaquenil I started ~1 yr ago, and I don't think I'm having any success from that, but waiting to see the prescribing doc before I get off.

                  I used to have lots of flushing whenever I talked to anyone -- this is so much better. I think the clonidine + high effexor dose (225 mg) was contributing. It is so much better after I tapered off the clonidine and lowered my effexor to an SSRI dose (instead of SNRI). I'm looking to swap effexor for lexapro or zoloft though -- I have a hunch that my sympathetic nervous system is on overdrive, and don't need any stimulating effects from norepinephrine if that makes sense.

                  I noticed a benefit from adding mirtazapine to the effexor. Esp. at night lying down and such, but also generally.

                  Amlodipine is a CCB as I mentioned somewhere else and I find a super low dose helps a lot with vasospasm + nerve pain for me.

                  The botox helps make my face a little bit cooler.

                  Next week I'm trying a stellate ganglion block. I am very hopeful that this could also benefit me.

                  If I were you, I'd definitely add plaquenil (I don't see how this could hurt you?) and an SSRI or SNRI if you aren't already on one. There's a chance ppl get worse from the serotonin but I think this is not too likely and if that happens ppl still get luck it seems with mirtazapine.

                  For the nerve pain -- since you said you wanted to avoid gabapentin etc -- I would try alpha lipoic acid if you find you still need it after that. I noticed a positive difference in a couple weeks. However it is a bit of a dilator so be cautious. I had to stop due to odd side effects (insomnia + hair loss) but I still think it might be worth a try? I found lyrica to be much better than gabapentin in terms of side effects and benefits, so there's that possibly too for nerve pain. I went off lyrica completely because the amlodipine for me is so much more effective for whatever reason.

                  HTH!

                  Comment


                  • #10
                    Very helpful! Thanks, Lizzy.

                    Do let us know how the Stellate Ganglion Block goes. After doing some googling, I’m thoroughly intrigued. Seems like this could help with pain and flushing?? Not to mention it appears to have fewer side effects than systemic meds.

                    Please keep us posted!!! Good luck.

                    Comment


                    • #11
                      Wow... most of the meds you’re mentioning here are unknown to me.. I Haven’t tried any of them except clonidine, which, to be honest, I probably didn’t give a fair trial - I may give it another go in a while if I feel the need.

                      I must say, Sg321, your symptoms seem very similar to mine. The (apparently) triggerless face pain has been horrible. I would always get it for a day or two after a sizeable flush (which I’ll define as one that lasts more than an hour) but then, like you have said, often my face would hurt for anything up to 10 hours even if I haven’t flushed... then it would stop just as suddenly. I tried painkillers and they didn’t stop it at all.

                      As far as I can see there can only be two possible reasons for my face pain having been non existent for the last five weeks. One is the LDN... the other is that I had another IPL session (my 9th) at around the same time as I started the LDN.... My ipl recovery, which is usually tough for about 3 weeks, was really easy this time as well, I have to say. Should I put that down to the LDN? Who knows... for certain it seems that LDN is known to be helpful not only for auto immune and inflammatory conditions but also for neuropathy, so I’m sure going to keep,on taking it for a decent amount of time.

                      ...and of course I’ll report back here with any meaningful news.

                      I begin week 6 tomorrow, when I’ll move up to 4mg daily...almost the max dose. After that I’ll arrange a follow up consultation, which will be interesting.

                      OH.. and the international LDN conference is taking place in Scotland this year. It’s in July. I have a ticket, so I’ll see what I can find out there... given that so much of the focus with LDN is on conditions that are considered to be way more serious than rosacea , it may be that the presenters don’t want to waste their time on rosacea questions (a bit like most docs and derms generally!j but I’ll sure give it a try!
                      Last edited by Fiugs; 26 May 2018, 08:32 AM.

                      Comment


                      • #12
                        Wee update (7 weeks into LDN)

                        I’m now 7 weeks into taking LDN. I have been slowly increasing the dose, as per instructions (see my opening post) and three days ago I moved to the full dose of 4.5 mg nightly.

                        I had started taking 10mg propranolol 3 times daily around the same time as I started LDN. I stopped taking that a week ago, so that I could get a sense of which of the two things was helping my symptoms. Since stopping propranolol, I have had no increase/return of symptoms, so, so far it looks like it must be the LDN that’s been helping and not the propranolol, which is what I suspected was the case.

                        IMPROVEMENTS
                        My initial post was 1 month into LDN. At that stage I reported a complete lack of face pain.. you know, that weird, inexplicable neuropathy that some of us seem to get. That remains the case. Also, my face feels less sensitive generally; I’m able to tolerate many more sunscreens than before and my face seems to get less red when I’m washing it and touching it to apply skin products. Also - and this is hard to describe, but maybe you'll all get what I mean, my face doesn’t feel the minutest ambient experience the way it used to... for instance, before, I would feel the surface of my face more, simply being touched by the extra breeze due to walking along a corridor! Im also no longer feeling moderate rises of temperature on my facial skin anymore, when I go from one room to another.

                        I’ve had virtually zero ear flushes (they were always random - and horrible!) and am now able to tolerate warm food and drinks without getting nose-swelling type flushes that could last for over an hour afterwards. I had thought this was due to the propranolol, but so far these symptoms haven’t returned since I stopped taking it. I’ll let you know if that changes down the line.

                        So, all in all, I would say it feels like my skin barrier is improving and - and, I assume this is connected to the skin barrier improvement - something positive is happening on the neuropathic side of things.

                        I remain free of any of the slight raynauds symptoms and eczema, which, along with the above improvements, also happened pretty much on day one of taking LDN.

                        The weather has been warm here (by Scottish standards!) with temps consistently in the mid 20s centigrade. This will be low summer temps for many of you, but, given that my face has been unable to tolerate temps over 18/19 C without starting to flush, I’ve been doing well. I do get more rosy in the heat (because We Scots are just not used to it!) but I’m coping.

                        Oh... and I’m sleeping better than I have been for years!

                        Having said that, general facial flushing due to sudden increases in temperature is my remaining issue. But, once again, as I said in my first post, I can’t expect LDN to reduce the vascular growth I’ve been accumulating in the past 2 years.

                        SIDE EFFECTS
                        For me, there have been none to speak of... although in the past 10 days, basically since taking 4, and now 4.5mg LDN daily, I have been getting some quite vivid and memorable dreams... mostly about Merlin (!) who knew, for instance, that he was also David Bowie! Can’t say I mind the dreams at all!

                        MY RANDOM, CREATIVE THEORY
                        Interestingly,I did read somewhere that little or no apparent dreaming is one of the by-products of immune deficiency... and increased and vivid dreams is indicative of an improvement in this respect. I don’t know if that’s true, but I certainly have often thought - for quite a few years - that I didn’t remember my dreams like I used to, say, 10 years ago... it was around that time that my life, due to work situations, became highly stressful. Rosacea kicked in 2 years ago... who knows, maybe my years of stress and associated chronic lack of sleep weakened my immune system and contributed to my rosacea kicking off 2 years ago.

                        SUMMING UP...
                        I think that low dose naltrexone IS helping with my subtype 1 rosacea symptoms of highly sensitive skin and face pain. It has also, I think, helped with nose and ear flushes. I think (hope) that, the more time I get under my belt without these symptoms, the calmer my face will become. That, coupled with ongoing IPLs to take out some of the remaining excess vasculature, gives me real hope of further reducing my great susceptibility to flushing and starting to feel more normal again.

                        WHATS NEXT?
                        I have around a months supply of LDN left and will need another telephone consultation with the prescribing doctor in order to get more after that. I will of course bring my experiences so far to that meeting and I assume -hope! -that they will qualify for another prescription. If she offers any invaluable information /observations I will of course post them here.

                        OH... AND...
                        In my initial post I mentioned that I couldn’t find anything on the internet connecting LDN with rosacea improvements. Since then, I did find this one post on mumsnet. I’m pasting it here, FYI:
                        I have rosacea too, it appeared in my sixties fgs!
                        I'm hypothyroid and after doing some research
                        on LDN (low dose naltrexone) I bought some via
                        private prescription and found it cleared my rosacea
                        up.
                        After a few months on LDN I stopped taking it - it's quite
                        expensive and it didn't seem to be making any difference
                        to my hypothyroidism. A few weeks/months later back came
                        the rosacea so I'm going back on the LDN -
                        bloody rosacea. A hint of sunshine and I'm inflicted with sore
                        acne type pustules, not a good look.
                        Interesting that this person says it’s expensive. I guess it depends on the pharmacy that compounds it, so it may be worth shopping around. I don’t personally consider my cost of £20 per month a problem. That’s a compounding pharmacy that specialises in LDN in Glasgow (they supply to the entire uk). And of course I also have the possibility down the line of getting an NHS prescription, which is free here in Scotland, if my GP is willing to play ball, which she may be if I bring my positive results to her.

                        Sg321 how are you getting on with LDN so far? I think if a few more of us try this it would be helpful.

                        Sorry this update is so long folks. But I hope it’s all been useful,

                        Much love,
                        Fiona
                        Last edited by Fiugs; 3 June 2018, 10:36 AM. Reason: To apologise for the length!

                        Comment


                        • #13
                          Thanks for sharing your experience. What I find interesting is that low dose Naltrexone, is also used in SIBO treatment (which can also cause Rosacea) it is used to help stimulate the migrating motor complex of the intestines which can be impaired with Small intestinal bacteria overgrowth (SIBO). I know this may seem a little off topic, I just find it interesting.

                          Comment


                          • #14
                            Not off topic at all in my view

                            Originally posted by Dan3dwards View Post
                            Thanks for sharing your experience. What I find interesting is that low dose Naltrexone, is also used in SIBO treatment (which can also cause Rosacea) it is used to help stimulate the migrating motor complex of the intestines which can be impaired with Small intestinal bacteria overgrowth (SIBO). I know this may seem a little off topic, I just find it interesting.
                            Indeed.. and I forgot to mention above that my intestinal motility is mightily improved by LDN. I have tended towards constipation for many years, “going”, on average, two times a week. Asking my GP for a SIBO test would elicit quite a reaction, I think... I’m pretty sure she’s sick of me asking for tests for this and that, to see if it’s behind my rosacea. That’s one of the downsides of free health care, Drs are more budget conscious.. especially if they think their patient is over reacting, or a hypochondriac, which I ssuspect some docs (certainly mine) think about rosacea sufferers. I tend to assume (perhaps wrongly) that docs in the US will do almost anything for their patients if they’re paying for it. Of course there would be a downside to that too.

                            Do you know if the SIBO test is expensive or if it can be purchased online and done at home?

                            Dr Leonard Bernstein, who, you probably know, treats SIBO induced rosacea as one of his specialities, is one of the presenters at the LDN conference in Glasgow next month... He’s one of the reasons I am going to attend. I would be interested though, if he associates SIBO predominantly with subtype 2 rosacea. This may be a fed-up subtype one talking here, but it sometimes seems to me that when people talk excitedly about some sort of rosacea discovery (such as the SIBO connection) it usually seems to turn out that when they use the generic term “rosacea”, they mean the p&ps of subtype 2... or is it just me that feels that way?

                            ...either way, I am delighted to have a more fulfilling bowel life! And I hope to get the chance to ask dr Bernstein if he is referring exclusively to subtype 2 when he says “rosacea”.

                            Thanks for this input, Dan, it’s all part of the wider view isn’t it?

                            Comment


                            • #15
                              Ha!

                              ...of course i meant dr Leonard WEINSTOCK!

                              As far as I know, gastroenterologists tend not to also write world famous musicals... but I may be wrong.

                              Comment

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