Finding a cure, I need your help!

Posted , 4 users are following.

So went to see my surgeon yesterday and, fantastic news he is gunna help me. During the consultation we got talking about you guys and your experiences. He is very keen for us to conduct our own research (as previously suggested) so tomorrow night I have arranged to borrow a computer and will be setting up a survey, I'm posting here to ask if there are any questions people would like me to include? Honesty is the key, no one will judge you for drug or alcohol use or sexual partners, we are the answer here and we need to help one another. Thanks guys 

2 likes, 11 replies

Report / Delete

11 Replies

  • Posted

    That sounds really amazing. I think you are so lucky to have such a wonderful doctor like that. All the doctors I have seen to date are very passive and not very interested or willing to do much other than textbook prescribing of medication for me. Most of them stare off into the ceiling when I say I have HS because they are trying to remember some long lost lesson about it in med school. The dermatologist I have now is recommended by everyone so I am giving her a shot but I am not all that confident seeing how after one visit she offered me Acutane! Instead I opted for a lesser evil called Doxytab (tetracycline family). I am also trying tumeric pils which I bought ans started yesterday. They are supposed to help with inflamation in the body.

    Anyways sorry for the little ramble there lol I would love to answer your survey.

    Report / Delete Reply
  • Posted

    Hi Dottipants. It's good news that your surgeon is going to help you, I hope it all goes  well for you. 

    Thanks for offering to do this Survey.  I suggested doing our own research a while ago, but I'm just not technically minded enough and don't have the know how to do this. Someone kindly suggested trying Survey Monkey, if that helps any. 

    These are the possible reasons which I would like to be included

    Smoking

    Being overweight

    Having curly hair therefore deformed hair follicles 

    thick skin

    Overheating of body temperature

    Excessive Sweating 

    Food intolerance Eg dairy, nightshades, gluten etc

    Becoming stressed/anxious

    Washing too much

    Picking up a bug from a previous  operation or stay in hospital

    Having excess mucus eg post nasal drip

    Some form of reaction to domestic Pets

    Hormonal

    To name a few

    Good luck with the survey. I'm looking forward to seeing the results.  

    Report / Delete Reply
  • Posted

    One thing I have actually looked for a lot is if any large amount of subjects have been tested for all of the various streptococcus groups being present either through the pus or in their blood. Or if anyone has been given the really hardcore antibiotics that treat staph and strep.

    Also of interest to me would be if we all have elevated white blood cells, even when we have no obvious/blatant infection, which would suggest our immune system is working when it shouldn't be. There is a very little amount of success for some people who have tried immune supressing drugs but it is not recognized for HS and so a lot of people would never even be offered this drug. My dermatologist mentioned it last visit and we are going to discuss it in 3 months, but the problem is I would have to pay approximately 300$ a month to have it and there are of course other risks.

    It gets me frustrated though to think of all the things that no one is really researching. There seems to be no one who is really interested and I always wondered why? Maybe because this disease is just so confusing, some thing works for one and not for the other. I can't imagine its very pleasant to research and there are too many things to control for.

    Report / Delete Reply
  • Posted

    I'd be interested to help you and our selfs to be honest would be good to see the range of answers and trying to figure out a solution..

    I have just got my food intolerance test so am currently in the process of removing all said items from my diet.

    I am also currently on fluclox for a current boil I have..

    I am also on another type of pill to try and help my inflammations, this is not through the doctor but but purley a trial..

    Would love to help and try and figure out what actually sets these horrible things off.. 

    Report / Delete Reply
  • Posted

    I have made the survey, posted the link but they have to approve it before they allow it to be posted, but if anyone wants to go hunting for it, it's on fluid surveys and it's called HS smile x
    Report / Delete Reply
  • Posted

    Thanks Alan! Guys this is amazing! 7 responses in 5 hours this could really help! Already I am coming to the conclusion that despite what we are told smoking is not a trigger as more of us don't smoke than do!! I'm so excited lol x
    Report / Delete Reply
  • Posted

    Sorry for flooding the forum! Does any
    Report / Delete Reply
  • Posted

    Does anyone live near Nottingham, in the uk? There may be a trial there next year with dr ghazavi someone could get involved with smile 
    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up