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Thread: Advice please

  1. #21
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    Quote Originally Posted by Rubydo1 View Post
    Yes I’ve tried all that for the last six months I’ve researched it to death. I’ve tried l-glutamate, 50 billion probiotics, turmeric, slippery elm, vit D, magnesium, digestive enzymes, milk thistle, cutting out gluten and dairy. Celery juice marsh mallow root. I eat ground pumpkin/sun flower/flaxseed seeds daily.You name it I’ve tried it. And my symptoms have just got worse. I’m waiting for test results. Probiotics gave me terrible diarrhoea so went on to kefir instead. I’ve cut all sugar out of my diet.
    Don’t drink, don’t smoke, and eat anti inflammatory diet.
    I thrown hundreds at it trying to fix myself. Something is obviously wrong with me that’s not fixable through diet. It’s only the creams and stuff I have trouble with because I’ve not tried any creams before.
    I did research creams and mentioned soolantra but she ignored me and gave me this. And because it wasn’t on the list of creams I’d got written down it threw me. So I wondered it if was an off label use for it .
    Don’t get angry I’m just asking if anyone has used it .
    .
    You can get a private prescription for Soolantra at this website from a GP by filling in a tick box form and the doctor then reviews it:
    https://www.pharmacy2u.co.uk/soolantra.html

    Alternatively, see another doctor on the NHS.

    Different probiotics work differently. Some didn't work for me. However, I'm optimistic Symprove may help as it has better evidence than most probiotics to support it. Many people with rosacea found kefir didn't help them - it may be helping IBS but making rosacea worse.

  2. #22
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    Quote Originally Posted by antwantsclear View Post
    .
    You can get a private prescription for Soolantra at this website from a GP by filling in a tick box form and the doctor then reviews it:
    https://www.pharmacy2u.co.uk/soolantra.html

    Alternatively, see another doctor on the NHS.

    Different probiotics work differently. Some didn't work for me. However, I'm optimistic Symprove may help as it has better evidence than most probiotics to support it. Many people with rosacea found kefir didn't help them - it may be helping IBS but making rosacea worse.
    Iím seeing a different doc in two weeks about my skin.
    My eye lids are being distorted by blepharitis so I suspect demodex. I got told by a doc at Sheffield eye hospital that demodex is an old wives tale. Iím hoping this doc Iím seeing will have a better idea. As she holds a skin clinic. They are so behind in the NHS itís scary. Iíve just ordered some new probiotics to try .
    I have Neuro/rheumatologiy/dietician/gastro hospital appointments next week followed by derm doc week after. Will look at symprove but my funds are dwindling quickly.
    Thank you for your help with soolantra will ask her for it this time. How is it on sensitive skin ?
    Does it make it worse before better ?
    I do appreciate your help Iíve got so much going on health wise itís crazy . I was holding down two jobs
    Six months ago . Walking 6 miles a day as a dog walker . I canít even manage to walk my own now hubby has to do it . Itís just insane.
    Iíve done everything to try and fix myself.
    But most of you guys have been amazing for help and I canít thank you enough.
    Never thought Iíd be spending most of my time just looking for a soap to wash with .
    You mention it to people and they look at you like your mad even the doctors .
    You start to feel like your mad lol

  3. #23
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    Quote Originally Posted by Rubydo1 View Post
    Yes Iíve tried all that for the last six months Iíve researched it to death. Iíve tried l-glutamate, 50 billion probiotics, turmeric, slippery elm, vit D, magnesium, digestive enzymes, milk thistle, cutting out gluten and dairy. Celery juice marsh mallow root. I eat ground pumpkin/sun flower/flaxseed seeds daily.You name it Iíve tried it. And my symptoms have just got worse. Iím waiting for test results. Probiotics gave me terrible diarrhoea so went on to kefir instead. Iíve cut all sugar out of my diet.
    Donít drink, donít smoke, and eat anti inflammatory diet.
    I thrown hundreds at it trying to fix myself. Something is obviously wrong with me thatís not fixable through diet. Itís only the creams and stuff I have trouble with because Iíve not tried any creams before.
    I did research creams and mentioned soolantra but she ignored me and gave me this. And because it wasnít on the list of creams Iíd got written down it threw me. So I wondered it if was an off label use for it .
    Donít get angry Iím just asking if anyone has used it .
    all well and good using the things that you have done , ive used them myself but i will repeat my question - have you been tested for bacterial infection , fungal infection , parasites etc ? if not your wasting your time with supplements and everything else youve tried - they will not work unless you know what is the cause !

    do yourself a favour , pay for private testing like ive done - dont rely on the NHS , they are abysmal and will not even provide the tests you require .

    you need to take control - i know what meds work for me but have to buy them privately as my doc is asian and stuck in the 1940,s he doesnt understand what is going on and wont even give me clonidine which ive been taking for 4 months now and has made a massive difference ...

    the only person who can fix this is you , dont rely on the doctors , they are clueless

  4. #24
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    Quote Originally Posted by boris View Post
    all well and good using the things that you have done , ive used them myself but i will repeat my question - have you been tested for bacterial infection , fungal infection , parasites etc ? if not your wasting your time with supplements and everything else youve tried - they will not work unless you know what is the cause !

    do yourself a favour , pay for private testing like ive done - dont rely on the NHS , they are abysmal and will not even provide the tests you require .

    you need to take control - i know what meds work for me but have to buy them privately as my doc is asian and stuck in the 1940,s he doesnt understand what is going on and wont even give me clonidine which ive been taking for 4 months now and has made a massive difference ...

    the only person who can fix this is you , dont rely on the doctors , they are clueless
    If you mean gut wise h pylor negative. Iím awaiting stool sample results. And 24 hour urine test.
    Yeah I know what you mean with the Docs are clueless. Iíve already paid private for other tests.
    But to be honest with tremors in hands and spine I think what ever Iíve got has progressed to the nervous system. Iíve got a young female doctor who has been amazing pushing things through as quick as possible.
    The older docs in the practice have been useless . The derm Doctor is at another practice locally. If sheís any good Iíll swap practice. But Iíve been battling stomach issues for years without the knowing we have now about gut and illness. Had loads of antibiotics as a child and teenager so itís probably screwed me up from the start. But Iím fighting this with everything Iíve got. Just exhausted with everything Iíve got going on. But Iíll ask about all you mentioned .

  5. #25
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    Quote Originally Posted by Rubydo1 View Post
    Iím seeing a different doc in two weeks about my skin.
    My eye lids are being distorted by blepharitis so I suspect demodex. I got told by a doc at Sheffield eye hospital that demodex is an old wives tale. Iím hoping this doc Iím seeing will have a better idea. As she holds a skin clinic. They are so behind in the NHS itís scary. Iíve just ordered some new probiotics to try .
    I have Neuro/rheumatologiy/dietician/gastro hospital appointments next week followed by derm doc week after. Will look at symprove but my funds are dwindling quickly.
    Thank you for your help with soolantra will ask her for it this time. How is it on sensitive skin ?
    Does it make it worse before better ?
    I do appreciate your help Iíve got so much going on health wise itís crazy . I was holding down two jobs
    Six months ago . Walking 6 miles a day as a dog walker . I canít even manage to walk my own now hubby has to do it . Itís just insane.
    Iíve done everything to try and fix myself.
    But most of you guys have been amazing for help and I canít thank you enough.
    Never thought Iíd be spending most of my time just looking for a soap to wash with .
    You mention it to people and they look at you like your mad even the doctors .
    You start to feel like your mad lol
    Zhongzhou cream can be very helpful for killing the mites, available on Amazon. Dermatologists in the UK not only are generally not actively researching rosacea, but also are failing to take account of the high quality research being done about demodex mites and rosacea by Professor Powell and his colleagues in Dublin. Many many rosacea patients are finding treating the mites improves their condition, so I would persist with the appropriate treatments, such as Zhongzhou cream or Soolantra cream - Zhongzhou is better.

  6. #26
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    Quote Originally Posted by antwantsclear View Post
    Zhongzhou cream can be very helpful for killing the mites, available on Amazon. Dermatologists in the UK not only are generally not actively researching rosacea, but also are failing to take account of the high quality research being done about demodex mites and rosacea by Professor Powell and his colleagues in Dublin. Many many rosacea patients are finding treating the mites improves their condition, so I would persist with the appropriate treatments, such as Zhongzhou cream or Soolantra cream - Zhongzhou is better.
    Quite right about Dr. Powell. Watch this video interview with Dr. Powell who interviews Fabienne Fortan, MD. The Zhongzhou cream isn't available through Amazon USA but you can purchase through the RRDi affiliate program.
    Last edited by Brady Barrows; 4th July 2019 at 06:39 AM.
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  7. #27
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    Right been told not to use any soap or face wash just water.
    Been given soolantra and a back up prescription for azelaic acid.
    Seborrhoeic dermatitis really good with using a tiny amount of the face wash I bought from Superdrug.
    I take it you get die off with soolantra.

  8. #28
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by Rubydo1 View Post
    Right been told not to use any soap or face wash just water.
    Been given soolantra and a back up prescription for azelaic acid.
    Seborrhoeic dermatitis really good with using a tiny amount of the face wash I bought from Superdrug.
    I take it you get die off with soolantra.
    Most rosaceans report it gets worse before it gets better using Soolantra (or horse paste) and the usual reason proposed is the mites dying off. However, there are eggs that the mites lay which hatch. The normal incubation period is 14 days. So there are always new mites hatching every day. That is why even after clearance which is reported to take three months, you still have to continue using Soolantra as a maintenance application maybe two times a week after clearance. This report by the Russians is eye opening. And this update post on demodectic rosacea is educational.
    Last edited by Brady Barrows; 18th July 2019 at 10:41 PM.
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  9. #29
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    The die off problem seems to be reduced if you're taking doxycyline, because this reduces the bacterial infection/inflammation of the dead mites decaying I presume. This would not be sufficient reason to take doxycycline, however, if you don't otherwise need it.

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