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    • CommentAuthorWendy75
    • CommentTimeJan 22nd 2012 edited
     
    I shall jump on the diary/blog bandwagon with everyone else!

    Diagnosed with Samter's Triad (ASA) in December 2010, following a severe reaction to an accidentally taken aspirin which ended up with my being blue lighted into resus and shot full of adrenaline, steroid and anti histamines. I already knew I had asthma and nasal polyps. I had surgery to clear the polyps in 2004, 2008 and last week.

    After my diagnosis (which went like this; ENT Dr 'Ah, I see you have had an allergic reaction to aspirin! So you have ASA syndrome' Me 'What does ASA stand for? ' Dr 'I can't remember. Some people call it aspirin triad. It's very unusual in young women' Me 'Oh, am I special?' Dr (laughing) 'Yes, yes you are. Okay, time for surgery again, I think? I will send you for a scan, the date will come in the post and then I will see you again. Goodbye') I did a bit of research and the next time I saw my ENT dr I asked him did he think that a low sal diet, or an aspirin desensisation would help. He instantly said yes and agreed to refer me for both. I was pretty happy to be referred to Addenbrookes.

    As a side note, between my visit with him in Dec 10 and spring 11, I had a weird bug that gave me diarrhoea for about a month. I saw my GP and my homeopath who both agreed it was a pretty atypical bug and the GP ran tests, all of which came back negative. It lasted almost exactly a month, during which time all I could face was bananas, cereal bars & water and at the end of the month I had lost 25lbs and regained my sense of smell. I regained the weight and lost the smell as soon as the bug finished, which happened literally overnight, but it strengthened my belief that what I was eating was playing a part. That led me to do some research and ask about the low sal diet.

    The allergy department at Addies saw me in September 2011 and immediately wanted me to come under the umbrella of the joint clinic they run with ENT. I cancelled my op in Colchester, which should have been Sept 11 and transferred my care to them. They gave me a course of steroids, long term antibiotics, Singulair and Flixonase nasules as well as a Neilmed sinus rinse. I had previously been using a nasal spray only, which they found quite surprising.

    Today I am 10 days out from my third surgery. I am not taking steroids this time, but I am still using all the other drugs given to me. I am eating a low sal diet, supplemented with probiotics, Omega 3 oils, cal/mag & garlic. I am off to Addies twice next week, once for a post op check with ENT and then for a follow on plan with Allergy, which may include an aspirin desensisation. There is likely to be a 16 week waiting list for that, I think, which hopefully gives me some time to see if I can get things under control with diet and supplement. at 36, I'm not sure I want to commit to taking aspirin every day for the rest of my life just yet. Last time I saw allergy, the Dr did say that they are running some clinical trials, which I might qualify for. He also said that one of the drugs they are trialling, he thinks will be the wonder drug for Samter's. So, we'll see. :-)
    • CommentAuthorramie
    • CommentTimeJan 22nd 2012
     
    Wendy, Where do you live? It sounds like there is progress in getting doctors who know what you are talking about. The USA is so behind in many aspects of medical care compared to other countries. Maybe it is about money. You are lucky. By the way, ASA is the abbreviation for aspirin which is Acetylsalicylic Acid. You can use ASA allergy on a med alert ID to identify your problems with aspirin and the people who need to know will know what it is.
    • CommentAuthormarigold
    • CommentTimeJan 22nd 2012
     
    I'm so glad that you are receiving treatment and validation -- thanks for starting the blog.

    I too, almost died after taking Naproxen - -but I have yet to get ANY kind of medical validation almost a year later. I don't know what the heck to do about it. This week aI have a challenge with Febreeze -- hopefully the tryptase will be up.

    GOod luck and take care! :)
  1.  
    Hi Wendy, thanks for starting this thread. Any chance you could change the title so it includes the word "blog", just so that it's easier for people to find when they do a search? Also, flixonase contains fluorine. I'd steer clear of it if I were you.
    • CommentAuthorWendy75
    • CommentTimeJan 26th 2012
     
    Ramie, I am in Colchester, Essex in the UK. I am being treated at the nearest allergy unit, which is about an hours drive away, but well worth the time. I hadn't thought about putting the allergy on an alert bracelet, I will do that, thanks. Gosh, being given an aspirin if I was ill already would be awful.

    Marigold, I hope your Febreeze test shows a reaction, How awful that no one is willing to acknowledge what happened to you. :(. My consultant told me yesterday that some people travel 4/5 hrs to see him and that it is because SS/Samters is so poorly understood that it is a huge relief to them to find someone who believes them.

    Black wizards, title amended. :-). I have been trying to make sense of the many useful medical posts you have made, thank you. Apparently my A level biology has gone from my mind, nearly 20 years on, but I will get to grips with it. I don't entirely yet grasp why flouride is to be avoided, but I will get there. sorry to be a pain, but which nasules or spray would you suggest.

    I have been signed off by ENT today, post op is all looking good, although I can't smell yet. :(. allergy agreed to admit me for an aspirin desensitisation, which will probably be in June. I have to line up childcare for the dear little children (lol) and my Mum is in Israel March-end of May.
    • CommentAuthorWendy75
    • CommentTimeJan 26th 2012
     
    Just to add, the allergist I saw yesterday said that when using the Neilmed sinus rinse, I should sniff in as I squeeze the bottle up my nose, to help clear out the back of the nose. I would not have thought of that on my own, so thought I would mention it in case anyone else is using one of these. :-)
    • CommentAuthorSonicro
    • CommentTimeJan 26th 2012
     
    Hi Wendy

    I have been in contact with Dr Pamela Ewan of Addensbrooke just today. I am possibly thinking of travelling over to UK to see her. Who is your allergist in Addenbrooke?

    U will catch all my events under Sonia's blog. I will be interested to see how u get on at the aspirin desenisition, my immunologist said because my reactions are pharmalogical rather than Ige that it probably wouldnt work which if it could work for others then there is hope. I don't fancy taking an aspirin for the rest of my life either but if it stops the anaphylactic it is worth a try
    • CommentAuthormarigold
    • CommentTimeJan 26th 2012
     
    Wendy, thank you!! I will find a dx, someday, hopefully! The new date is the 2nd. :)
    • CommentAuthorWendy75
    • CommentTimeJan 27th 2012 edited
     
    Sonia, I saw Dr (Mr?) Nasser in Clinic 2a, I just googled and I think they work together.

    Marigold, good luck on the 2nd, I hope you found the right Febreeze.
  2.  
    Wendy, fluoride affects several enzymes, including cyclo-oxygenase, catalase, and phosphatases, but the biggest concern for us may be the activation of G proteins, leading to the sensitisation of TRPV1. You'll get a better idea of what I'm talking about if you read my Oct 23rd 2011 post on the TRP thread. Fluoride also accumulates in bones, and leukocytes seem to be heavily involved in salicylate sensitivity, so that could be another factor, and there are other things like hypothyroidism, mast cell activation, kidney damage, increased intestinal permeability, and increased blood brain barrier permeability. When I found this forum I already knew I had a major problem with fluoride, but was uncertain about links with salicylate sensitivity. Even without subsequent research, it would be difficult not to conclude now that fluoride is a significant factor, because there have been so many people on the forum who either say it affects them, or whose experience suggests that it does. Fluoridated water, fluoroquinolone antibiotics, Diflucan, general anaesthetics, and dental treatment are implicated, and possibly also tea drinking, air pollution, and other pharmaceuticals. Until recently I was unsure if there was significant release of fluoride ions from pharmaceuticals containing fluorine, but if you do a search for "voriconazole" you'll find research that shows there is, though it's possible there are some drugs which are exceptions. I'm sorry, I can't suggest any nasules or spray, because I don't know anything about them - I just know that using pharmaceuticals which contain fluorine is risky.
    • CommentAuthormarigold
    • CommentTimeJan 27th 2012
     
    Thanks Wendy, I love the netis except now I can smell the salt and have been avoiding for that reason, lol. Sigh.

    black wizards -- I can't seem to go without my Fluticasone Propionate. I tried, and got the usual horrific sinus problems, I was very lucky it didn't end up an infection -- so I do feel trapped using it. Right now, we don't know that I can tolerate ANY antibiotics, so preventing infection is top of the list.

    Oh, well, I just wish there was something I could do to make the ss better. I'm just getting worse no matter what I do. It's very depressing!

    Take care. :)
    • CommentAuthorWendy75
    • CommentTimeJan 30th 2012 edited
     
    Thank you everyone for the feedback and comments. I know SS is a horrible thing to live with, but it really helps to know I'm not alone.

    So, updating, I have been eating from the medium list of sals and below, with emphasis on the negligible sals, cutting sals and preservatives etc from my personal products. I have seen a huge reduction in my usual sal reactions, no wheezing, no sneezing, no itchy ears, nose and mouth. I am still taking the supplements I listed in my OP, but I am not taking the antibiotics anymore, which is a relief. Saturday night we went out for a meal with friends. I ate no/low sal all week in preparation, plus I offered to drive, so I wouldn't be tempted by a glass of wine! I had the wisest choices possible from the menu and where possible, without being rude, didn't eat the things I shouldn't and - Yey - didn't react to anything. Unfortunately, I got a bit ahead of myself and had a shop bought pudding with dinner on Sunday, plus ham at tea time and was a bit sneezy and reactive this morning. It was probably a good reminder though that the salicylate bucket is not that big.

    Does anyone else get grumpy? I had a bit of a bad day yesterday. I wanted a curry, a glass of wine, an apple, grapes, bacon, fruit tea with a spoon of honey, bovril on toast, a ham sandwich with red chilli jam. I decided to have a go at making my own hummus, as the supermarkets varieties I am tempted by either have veg or olive oil in. The first batch was horribly lumpy because of the skins of chickpeas. I was blitzing them in the tiny food processor I had for preparing small amounts of purée for the boys, which has rather had it. The second lot, I squashed each chickpea by hand and took the skin off, which did not do much to improve the texture. :(. I then made a comment about it on FB and was bombarded with people who clearly thought I was showing off about making hummus. Ha, as if. I would give a lot to be able to just eat what I want without having to read every single label, a domestic goddess I am not. I don't expect everyone to know/understand about sals, but a lot of the people who commented do know.

    Anyway, enough moaning. I should go and take my supplements, I think I am up to 6 1g fish oil tablets a day now, hoping to be up to ten in a week or so.
    • CommentAuthorWendy75
    • CommentTimeJan 30th 2012
     
    Ugh, I had a proper food tantrum this afternoon and polished off a box of ferraro roche left over from Christmas. I've been sneezing and feeling lethargic ever since. Why do this to myself? I'm beginning to understand my friend with diabetes who managed it terribly in her late teens and early twenties and said it was because she was angry about having it.
    • CommentAuthorWendy75
    • CommentTimeJan 30th 2012
     
    Of course, I am lucky not to have the violent responses many of you report, but I can't see the damage I have done on the inside, ie polyps recurring. Well, off to bed and tomorrow's another day.
    • CommentAuthormarigold
    • CommentTimeJan 30th 2012
     
    Yes, I do get grumpy from sals. For instance, I can get instantly grumpy from a perfume -- get some fresh air - and instantly not grumpy. It's one of the fastest symptoms that I have to strong sals.

    HUGS!! Thanks for sharing -- yes, we aren't alone, although, it does feel like it some days. It's so good to come here and read about how people are coping. :)
    • CommentAuthorPossum
    • CommentTimeJan 31st 2012
     
    RE: "I'm beginning to understand my friend with diabetes who managed it terribly in her late teens and early twenties and said it was because she was angry about having it."
    Hi...that touched a spot with me & I know it was the case with my Mother with mismanaging her diabetes!! Maybe it is the rebel in us all??!!
    Glad to hear you are on facebook... I shall look you up ;-) I am Possumcombes on there if anyone else is interested
    • CommentAuthorWendy75
    • CommentTimeFeb 9th 2012
     
    I just thought I would update. I am now up to 8 fish oil capsules, as from today. I know this was the dose at which the Southampton study found benefits stopped, so I am not too concerned that I haven't felt any different yet. Will keep you posted. :-)
    • CommentAuthorWendy75
    • CommentTimeMar 1st 2012
     
    Meh, updating.

    I lost heart with the supplements and have just forced myself to start taking them again. I have started making yoghurt at home with milk and a couple of tbsps of plain yoghurt from the shop. It works out much cheaper than either buying yoghurt or using the commercial yoghurt maker I had previously and hopefully is providing me with the necessary probiotics.

    It is all just so overwhelming, sometimes. I still have so far to go. I need to talk to my GP to see if she'll switch me onto a nasal spray without flouride, but given that I still don't wholly grasp why flouride is to be avoided, I'm not sure I can be very persuasive. Our drinking and bathing water is fluoridated at source and I can't work out how to fix that either.
    • CommentAuthorPossum
    • CommentTimeMar 1st 2012
     
    Maybe you should talk to BlackWizard re fluoride?
    • CommentAuthorWendy75
    • CommentTimeMar 1st 2012
     
    Thanks Possum. I tried to find you on fb, but couldn't...not sure why that was. Yes, it was bw who commented up thread and alerted me about flouride. I need to carve out a couple of hours to read through the relevant threads, look stuff up and try and get a grip on it, but my children are no respecters of my need to do that sort of thing! A job for the weekend, I guess. :-)
    • CommentAuthorPossum
    • CommentTimeMar 1st 2012
     
    Oh (??) - re facebook - I am possumcombes? There's a few possums on there ;-) My latest avator/pic is a cartoon pic of a maid standing next to a man sitting behind a newspaper lol (My main occupation in life right now - with husband...)
    • CommentAuthoralice15
    • CommentTimeMar 1st 2012
     
    Thanks for your post Wendy - it made me laugh. I was told I had ss.about 13 years ago and was pretty perfect- I loved the results on my life and wouldn't have gone off it for the world (if you can have eggs asking for an omlette or a cheese omlette is a good way to eat out) but then I moved towns, had bully boss after bully boss and thought what the heck. What a mistake but then I got pregnant and could eat anything through my pregnancy - it was wonderful. Now I have to start all over again and I hate it! Every fibre in my being is against it and I suspect it is now more than just ss so it is great to read you having the same struggle and yes to the posts re the badly managed diabetes. After not being able to eat much for si many years and then being able to eat e everything.... it feels like an almost impossible task.
    • CommentAuthornanciswell
    • CommentTimeMar 2nd 2012 edited
     
    This illness forces a person to find pleasures in other things.. It has taken me 35 years of hell to finally feel alright about not grabbing those potato chips on Acadamy Awards night.. it turns out it was the chips and the company and not the actual awards that I enjoyed ... and so I have developed my character to actual make some use of my time.. although I still have the TV on too much , I at least multi task and get some things done.. Life does not last all that long..

    It is a really tough road .. being forced to watch so diligently what we eat .. and not having the social ability to be flexible.. It can get better . I just got my first food back .. Hang in there.
    • CommentAuthorFullest
    • CommentTimeAug 10th 2012
     
    Thanks for your post Wendy im new to the forum,i got Samters for 3 years now.And im 23 :( So can you tell me what supplements helped you the most(for asthma and polyps)?
    • CommentAuthorWendy Lady
    • CommentTimeAug 19th 2017
     
    This post gives me much hope..... for I am going to Dr Shuaib Nasser's allergy clinic at Addenbrookes in a couple of weeks and it gives me a lot of hope to see that he has been mentioned on this site.