Hi all, I posted on here bout a week ago. Had a chest infection, finding it difficult to breathe. Thanks for all the kind replys. Had an xray and all clear which is grear news. However I have acute bronchitis and am now on my third dose of antibiotics, mire steroids, and a nebulizer. What I don't understand is whilst I do feel pretty awful with this, its brought on lots if other symptoms. I'm having a problem walking, my balance is shot to pieces. I have the most horrendous brain fog. My gums are inflammed. I have tremors, my thought process is and responses are very slow. I phoned to see if my neuro would see me but he declined the's ok, I'm sure I will survive, but I thought it best for him to see me like this as he hasn't before. I look an absolute sight aswel. My skin has broken out in acne on my chin, face and shoulders. He reckons to the two Colchicine I'm on a day should do the trick. Is this right.? Should I just get on with it and try to get a grip, seriously? Or should I see a neuro. Please tell me if I'm being over the top or right to feel I should be seen...thanks...

8 Replies

  • Hi Pheobe hun,

    Sounds to me like your in full flare mode hun !

    Flares can vary so much and what you are describing is one that has hit a lot of different places in your body and you could do with some help to manage it all bit by bit.

    I take it from your question that you are not going to one of the centres of excellence ?

    These are based in Aintree (Liverpool), Birmingham and London and have all the specialists you need to see in one place. There are contact numbers and email addresses on the main BSS webpages for quick reference.

    I don't know your situation regarding where you are getting all your treatments from but a neurologist is only one of the experts you are likely to need to see so the C of E's are certainly the place to go and as quickly as you can. If you haven't been before then the first thing to do is contact the nurse at the one nearest to you and expain what is going on. She will then advise you what to do next.

    Even if you cannot attend the centres because of where you live, I would try speaking to them anyway as they will still be able to advise you ( or your GP if he/she wants to contact them for you ) and advise you what is the best way to handle the flare you are currently having.

    Please don't feel that you have to try to fight the flare all by yourself hun, there is help and advice out there from the medical experts and you need to take all they can offer hun.

    Good luck sweetie, hope you get sorted out really quickly....remember....don't sit on it hun ......the sooner you get some help the easier it is likely to be ! These things are better the sooner they are treated. Okay ?? Mwah !

    Tootles xx :)

  • Hi Phoebe

    Have to agree with Xandii you sound like you are having a huge flare. We are all different regarding medications and the amount. I'd push things a bit - can you get your GP to phone him?

    It's very annoying if you are solely in the hands of one person who is not taking you seriously. My problem was with dermatologists originally and I had to change specialists (and GP)

    to get anywhere.


  • I would travel anywhere to get my behcets sorted. It is worth the trips i dont know about anyone else. I live in cumbria and go to Leeds manchester and waiting for Liverpool appt. I have my fingers crossed for Prof Moots clinic to have all the answers or at least some hope in getting this disease under some control. I think you should get referred i agree with everyone else a neuro is one dr you need to see. Hope you feel better soon i know how you are feeling right now.

  • You poor thing. I get slain with chest stuff too so I sympathise.

    I agree with everything said already but can I add a couple of things? If your neurologist hasn't seen you like this, get some video footage of you walking about or trying to open a jar. At least then you can show the next medical professional that asks about it and it will help you keep track of the timing. Secondly, I wouldn't be happy that someone caring for me declined to see me when I was having problems. If the GP route doesn't work and you're still concerned, I'd rock up at the local A&E and explain who he is.

    Wrap up warm, stay off dairy to help clear your chest, drink loads and sleep. As for brain fog, I was advised to get hold of some "Concerta" which has helped many people, but is not available at GP level.

  • Another tip for a congested chest is to take a warm bath, and try to stay on the steamy atmosphere as long as you can stand it, or do the old fashioned thing of towel over your head while you inhale the vapour from a bowl of very hot water. You could ass olbas oil or dissolve some Vicks in the water.

    As for your other symptoms, they are so obviously a flare. Please get help from your GP. Tell him you need an urgent appointment with the hospital. Ask him to phone them while you are in the consulting room, that way he/she will not forget.

    Sometimes you have to put your feet down with a firm hand.

    Good luck, sweetie. Never think you are being over the top. There is no such thing with this goddam awful disease. xxxxx

  • Thankyou to everyone who has answered here. I'm just a bit worried bout this dam chest problem. I no its nothing sinister but it just won't go and this is my 3rd course of antibiotics. I forgot to mention in my last post that I have been put on Ciprofloxacin. Please please tell me has anyone had experience of this antibiotic?...I googled it and it whilst it does treat bacterial stuff I read this really is an antibiotic with awful side effects. Would he really interested if anyone had taken it and how they got on. I will get in touch with the centres of excellence, I think its time. I also want you all to know just what a great support all you people are on here. Being able to vent, ask questions, and have a community I feel I can turn to Is a wonderful. My heart goes out to you all with this terrible disease. And I hope when I am a little more recovered and with it I can be as much support and help to all you people as you have been to me...thankyou...

  • Hi have been in the same situation as you and had the ciprofloxacin didnt do anything bad but didnt do anything good either. I ended up in hammersmith with prof haskard run loads of tests guess what nothing unusual ...... but we all new that raised white cell count. I was a question of time and taking it easy and staying away from people with colds lots of hugs horrid chest inf xxx

  • Stopping drinking coffee might heal up the acne sores on shoulders. This helped me. I can still drink tea.

    I understand about the flare. So frustrating trying to get the right help. Colchicine just gives me myopathy, noticeable arm weakness, but it must help some people.

    Chest infection sounds scary.

    I am in flare right now too & not sure where to go to get the treatment I want. I spoke to a Pharmacist friend who is also an Immunologist, and she thinks I need to target T. denticola (cause of gingivitis & periodontitis) along with needing to target other spirochaetes like Lyme Borellia. She also thinks I need to take Acyclovir (Zovirax) tabs antiviral off-label use. (It is normally taken for Shingles).

    Says to kill T. denticola need Doxycycline + Tinidazole or Metronidazole.

    (I had a good response to Flagyl then Doxy recently when severe eczema on palms/fingers cleared up. She said that response was a good sign).

    Ehlers-Danlos Syndrome predisposes one to Periodontitis. It is thought I may have EDS or one of the other genetic connective tissue disorders that makes me immune compromised.

    Two dental hygienists have confirmed I am in need of more regular scale & clean, which is difficult as I don't feel well enough & now worry my heart is involved. Have family history of myocarditis/pericarditis.

    There is more I need to target with macrolide antibiotics like Clarithromycin. I also need to break up bio films. For that I've already got Serrapeptase.

    Of course all this is controversial & different to immunosuppressive treatments.

    I'm feeling need to go to hospital, but if I stay on this side of the harbour I will surely get wrong treatment! So I'm thinking of going to St Vincent's Hosp where they have experience with Behcet's & also I know the Cardiologist there plus the Prof who has my referral works there. ( apptmt not til Aug too far off!) Oh my Gastroent also works at St Vincent's and he knows my recent peritonitis history!

    It is so frustrating my own Rheumy & Immuno did not recognise this disease 20 years ago!

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