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Thread: Worst flare up of flushing

  1. #51
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    Hi,
    Just wondering has anyone noticed an improvement in swelling when on low dose doxycycline?
    I was put on it when my stinging/ burning from nerves were my concern- the dermatologist hadnít a clue what to do with me so he just wrote his usual prescription for type 2 rosacea.
    Obviously it did nothing for the nerve pain ( duloxetine has since helped the nerve pain greatly, thanks to my intelligent family doctor).
    However, in recent months, flushing and swelling have become an issue so considering all the info. I am reading about doxycycline inhibiting vascular hyperpermability and plasma leakage ( which causes our swelling), I wonder is it worth a shot?
    Any advice?
    Molly

  2. #52
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Momof View Post
    Hi,
    Just wondering has anyone noticed an improvement in swelling when on low dose doxycycline?
    I was put on it when my stinging/ burning from nerves were my concern- the dermatologist hadn’t a clue what to do with me so he just wrote his usual prescription for type 2 rosacea.
    Obviously it did nothing for the nerve pain ( duloxetine has since helped the nerve pain greatly, thanks to my intelligent family doctor).
    However, in recent months, flushing and swelling have become an issue so considering all the info. I am reading about doxycycline inhibiting vascular hyperpermability and plasma leakage ( which causes our swelling), I wonder is it worth a shot?
    Any advice?
    Molly
    I'm on an antibiotic now that helps the swelling some. And it's still early. Docs think swelling is going to come back once I stop the antibiotic (oral metro) because it doesn't address root cause, but say it's safe so "why not a 2 mo trial". It might even help the pain some because it helps the pressure, and heat, and maybe at least some of the inflammation around the nerves.

    Yeah i hear antibiotics helping swelling some even if not the flaring itself. I was on oracea in the beginning and it didn't do a thing. But, as you say, swelling can get worse over time, and become almost its own issue.
    Last edited by laser_cat; 8th February 2020 at 10:57 PM.

  3. #53
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    Quote Originally Posted by antwantsclear View Post
    It's available at www.demodex.co.uk
    Hi sorry which product would you recommend ?

    Few listed on website

  4. #54
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    After using soolantra one side of my face particularly nose area is always redder then the other side.

    Only way I cure it last few days is mirvaso to help cool it down

  5. #55
    Senior Member Mistica's Avatar
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    Quote Originally Posted by laser_cat View Post
    I'm on an antibiotic now that helps the swelling some. And it's still early. Docs think swelling is going to come back once I stop the antibiotic (oral metro) because it doesn't address root cause, but say it's safe so "why not a 2 mo trial". It might even help the pain some because it helps the pressure, and heat, and maybe at least some of the inflammation around the nerves.

    Yeah i hear antibiotics helping swelling some even if not the flaring itself. I was on oracea in the beginning and it didn't do a thing. But, as you say, swelling can get worse over time, and become almost its own issue.
    Where did you hear that metronizadole helps reduce swelling and inflammation around the nerves?
    Metronizadole can have nasty sides effects, the most common being nerve damage. This was the drug which suddenly turned on me and caused the most severe flushing, swelling and neuropathy I could have imagined.
    Be careful with this drug. If you notice any tingling anywhere in your body... stop it immediately. I wish I had done so.
    I never fully recovered.
    It can really mess up the gut too.
    I am surprised you are taking it.
    Previous Numerous IPL.
    Supplements: Niacinamide, Vit K2, low D3, Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Very low dose B's. Low dose zinc (to correct deficiency).
    Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA 2%, ethyl ascorbate 2%.

    Treating for gut dysbiosis.(This is helping).
    Previous GAPS diet. Have now introduced lots of fibre.
    Fermented Foods. Intermittent fasting -16-18 hours.
    Oral Colostrum. Helps reduce food reactions.

  6. #56
    Senior Member Mistica's Avatar
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    Not really pertinent to your case, but indirectly, it is worth a read.
    Especially given your very dysregulated CNS induced flushing.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3910815/

    And this one.

    https://pubmed.ncbi.nlm.nih.gov/1690...ic-neuropathy/

    Personally I feel metro is not worth the risk with patients who already have some type of autonomic problem, including those with flushing disorders.
    Last edited by Mistica; 9th February 2020 at 03:08 PM.
    Previous Numerous IPL.
    Supplements: Niacinamide, Vit K2, low D3, Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Very low dose B's. Low dose zinc (to correct deficiency).
    Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA 2%, ethyl ascorbate 2%.

    Treating for gut dysbiosis.(This is helping).
    Previous GAPS diet. Have now introduced lots of fibre.
    Fermented Foods. Intermittent fasting -16-18 hours.
    Oral Colostrum. Helps reduce food reactions.

  7. #57
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by Mistica View Post
    Not really pertinent to your case, but indirectly, it is worth a read.
    Especially given your very dysregulated CNS induced flushing.
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3910815/
    And this one.
    https://pubmed.ncbi.nlm.nih.gov/1690...ic-neuropathy/
    Personally I feel metro is not worth the risk with patients who already have some type of autonomic problem, including those with flushing disorders.
    Good work Mistica, as you always are spot on when it comes to research. I have made a post about this.
    Brady Barrows
    Blog ē Join the RRDi



  8. #58
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Mistica View Post
    Where did you hear that metronizadole helps reduce swelling and inflammation around the nerves?
    Metronizadole can have nasty sides effects, the most common being nerve damage. This was the drug which suddenly turned on me and caused the most severe flushing, swelling and neuropathy I could have imagined.
    Be careful with this drug. If you notice any tingling anywhere in your body... stop it immediately. I wish I had done so.
    I never fully recovered.
    It can really mess up the gut too.
    I am surprised you are taking it.
    I hate that you took it and you never recovered!

    Yeah, obviously not keen on the (rare) side effect of nerve damage ... But my swelling was so disabling that I couldn't make my doc appts (chairbound mostly). I feel much better, now - and some of the nerve pain is even improved. It was rx'ed due to its anti-inflammatory mechanism - sometimes rx'ed for severe rosacea / solid facial edema. To me oral metro is less risky by far compared to steroids and accutane. I'm hoping to transition to "safer" anti-inflammatories that are actually supposed to target the nerves soon, (insurance in US can be a hassle..) so I can get off the metro as soon as I can. (though, we don't know if I'll be a responder)

    Thanks for the heads up. I'm def. on watch for any extra tingling, weirdness. Every treatment decision has its own risks, and are personal decisions as we are all different. Right now the oral metro is improving my quality of life + letting me make my appts. Again, I hate that it caused you more suffering x

  9. #59
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    Quote Originally Posted by Mistica View Post
    Where did you hear that metronizadole helps reduce swelling and inflammation around the nerves?
    Metronizadole can have nasty sides effects, the most common being nerve damage. This was the drug which suddenly turned on me and caused the most severe flushing, swelling and neuropathy I could have imagined.
    Be careful with this drug. If you notice any tingling anywhere in your body... stop it immediately. I wish I had done so.
    I never fully recovered.
    It can really mess up the gut too.
    I am surprised you are taking it.
    How long did you use metronizadole for? I know myself from taking it that it can upset the stomach (and wouldn't want to take it long term), but didn't haven't the nerve damage. Elaine A has posted positively about its effectiveness as an anti-demodex treatment in combination with ivermectin (there is a study to demonstrate this). This may well be why it's helping Lasercat.

  10. #60
    Senior Member Mistica's Avatar
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    I am 100% certain Laser Cat does not have a demodex issue and as I have said before, it would greatly surprise me if many other people here did either.

    I took Metro over months in a pulse dosing fashion as part of the CAP (treating Cpn, which was just trial much like treating demodex.. targeting something you suspect might be there, but may not be).
    I only took two antibiotics for that trial. Azithromycin three times per week and Metro daily for five days in three week cycles.
    At first it seemed to help.
    In retrospect it was most likely helping abnormal gut flora and in fact that is what Prof Borody MD regularly prescribes it for. (Gastroenterologist who has a research clinic and performs FMT's).

    I had significant bloating and slow gut transit time prior to taking this. I also had regular breakouts or P&P. All of these symptoms resolved whilst on metro, but they returned to some degree after at time.
    I started the metro in the November 2010 (approximately) and after a few pulse doses I began to feel weird, like I was falling, especially when laying in bed at night.
    I also developed a mild tingling in the tips of my fingers.

    Within 20 minutes of the first dose of a pulse in mid Feb, I felt terrible and had terrible nerve sensations in my limbs chest and my face, particularly my upper right cheek.
    The falling feeling increased significantly, accompanied by a horrible 'whooshing' feeling starting from my chest and down my left arm and up the side of my face. Very difficult to explain.
    My flushing exploded. I couldn't lay down at all. My face just about exploded with the severity, split lips, nose bleeds, swelling and it just wouldn't stop!!! I had to apply ice packs nearly all the time and I was absolutely exhausted.
    Even my right inner ear became inflamed.

    It was hell on Earth and it continued for months. Actually it didn't really slow down till late 2012 when I began mega dosing with sodium ascorbate. That provided a HUGE relief, probably for multiple reasons.

    Metro neurotoxicity isn't as rare as you think.
    Prof Borody, the gastroenterologist said it happened quite a lot with his patients, but he considered it mild and would usually resolve within 6 weeks.
    Then there are the people who don't full recover.

    There is another forum member here, from Sweden I believe, who took metro for 3 weeks or so and benefited from it without incident.

    Of note I also took oral ivermectin at some point and had neurological side effects from that too, including increased flushing.

    Personally, as I keep saying, I think the demodex theory has gained too much attention and momentum.
    Anyone who takes the time to read the literature should arrive at the conclusion it just doesn't make sense (in most cases).

    And whilst I am on a roll, ha ha (major thunderstorm fast approaching, so typing fast before I shut down the pc), .... all these antidepressants, b/p meds people take, (and I fully appreciate why), all potentially, have adverse effects on flushing mechanisms. They change the way nerves function, including the control 'centre' in the brain.
    Last edited by Mistica; 10th February 2020 at 09:41 AM.
    Previous Numerous IPL.
    Supplements: Niacinamide, Vit K2, low D3, Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Very low dose B's. Low dose zinc (to correct deficiency).
    Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA 2%, ethyl ascorbate 2%.

    Treating for gut dysbiosis.(This is helping).
    Previous GAPS diet. Have now introduced lots of fibre.
    Fermented Foods. Intermittent fasting -16-18 hours.
    Oral Colostrum. Helps reduce food reactions.

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