mea_M Posted October 22, 2013 Share Posted October 22, 2013 Wait! Lightbulb moment here. Steroids are helping? Is the rash in a butterfly shape across your face? Swelling right? These are signs of lupus. Just a thought. I've learned so much about many diseases known to man after what I went through with Lyme. In fact , did you know that steroids are contradicted in Lyme patients? Apparently, they trigger an immune response making the patient worse. The fact that steroids helped you, make me believe Lyme is probably not your culprit but why don't you see if some autoimmune disease testing is feasible? Hope you find an answer soon D. Mea:-) Link to post Share on other sites
FitChick Posted October 23, 2013 Share Posted October 23, 2013 I wonder if it could be fungus growing in an air conditioner, heater or humidifier. Any plants in the house? Dust mites in the pillows and bedding? Link to post Share on other sites
Author D-Lish Posted October 23, 2013 Author Share Posted October 23, 2013 Wait! Lightbulb moment here. Steroids are helping? Is the rash in a butterfly shape across your face? Swelling right? These are signs of lupus. Just a thought. I've learned so much about many diseases known to man after what I went through with Lyme. In fact , did you know that steroids are contradicted in Lyme patients? Apparently, they trigger an immune response making the patient worse. The fact that steroids helped you, make me believe Lyme is probably not your culprit but why don't you see if some autoimmune disease testing is feasible? Hope you find an answer soon D. Mea:-) Hi Mea! I did gain weight after I quit my job last year, so I've basically lost what I'd gained plus a little more. I'm going to have to do some research on auto-immune diseases- and ask about further testing when I go back next week. The problem is not seeing the same GP each time- sometimes I get someone new, and they start back at square one thinking it's something that's been ruled out by someone else. Frustrating! I wonder if it could be fungus growing in an air conditioner, heater or humidifier. Any plants in the house? Dust mites in the pillows and bedding? Hey FC, No house plants, all my bedding has been changed- even bought a new bed. The air hasn't been on in a while since we've had a frost. However, both times in the past, when I blew up like a football and had to go to emerge- I was living in older buildings, where mold might have been a possibility. Link to post Share on other sites
whichwayisup Posted October 23, 2013 Share Posted October 23, 2013 Just a thought -- Do you dogs have fleas? You could be reacting to the bites. Or as Mea mentioned, Lyme disease...Get checked for ticks.. Even down below! (House fans will remember that episode of the grl who had one in her crotch) Why are you getting different GP's? Demand you stick with one. That's nuts to go through it all every single time! Link to post Share on other sites
Ninjainpajamas Posted October 24, 2013 Share Posted October 24, 2013 Sounds like a horrible reaction...but it doesn't necessarily have to be topical to cause this of course, I would also watch what you're eating, stay away from maybe lactose, citrus, berries...try to remember what might have changed when the symptoms starting occurring. Sometimes you can develop a reaction to these things later in life. So I would watch what you're eating, drinking and try not to put anything on your face or even touch your face with your hand, clean out the house/rugs/carpets and hypo-allergenic this and that...I would definitely harass the doctors office for a early appointment or do some research on a good doc and maybe get a second opinion there. Once you start making assumptions like "this couldn't be causing it" you could be overlooking something important so I'd cover all the bases again and in detail. Link to post Share on other sites
whichwayisup Posted October 25, 2013 Share Posted October 25, 2013 Just a thought -- Do you dogs have fleas? You could be reacting to the bites. Sorry that should have read do your dogs have fleas. :p Do an update soon!! 1 Link to post Share on other sites
spiderowl Posted October 26, 2013 Share Posted October 26, 2013 It might be worth changing the washing power and conditioner you use for your clothes. I found I had a patch where my eyes kept watering and were irritated. Eventually, I remembered that I had bought a different fabric conditioner (a more expensive one on offer). When I stopped using that and went back to the one I'd used previously (cheapo supermarket own) brand, the irritation quickly disappeared. I would not have connected eye irritation with the clothes I was wearing! 1 Link to post Share on other sites
mea_M Posted October 27, 2013 Share Posted October 27, 2013 Hi Mea! I did gain weight after I quit my job last year, so I've basically lost what I'd gained plus a little more. I'm going to have to do some research on auto-immune diseases- and ask about further testing when I go back next week. The problem is not seeing the same GP each time- sometimes I get someone new, and they start back at square one thinking it's something that's been ruled out by someone else. Frustrating!. I totally understand you're frustration. Same thing happened to me with a GP only it was my own doing because it seemed the first couple thought it was time to throw me in a straight jacket. Lol. I knew that there was some underlying root to my symptoms and did the round about with rule outs much like yourself. If possible, try and get a referral to a specialist who deals with autoimmune disorders. That's probably the best way to explore that one. Still hoping to hear you figure this out soon. Hugs! Xx Mea :-) 1 Link to post Share on other sites
Author D-Lish Posted November 5, 2013 Author Share Posted November 5, 2013 (edited) Hey guys, Thanks for your replies. Still feeling awful. Since I originally posted, I've been on prednisone twice. My eyes keep swelling up like I've been punched in the face. I don't look recognizable half of the time because my face looks like someone beat the crap out of me. I take the prednisone, the swelling diminishes and goes away, I feel great for a week, then as soon as I taper off I start to manifest symptoms of anaphylaxis again- so they put me back on it. I am currently tapering off my second round and the symptoms are coming back. My face is hot like i'm on fire, I feel like I'm running a temp all the time- but it doesn't register. I don't get respiratory symptoms as much as I get the skin reactions. It's become confusing because the prednisone could be causing side effects that are related to taking steroids, or it could be a symptom of what is wrong. No one has an answer. I'm so frustrated, this has been going on since May. I literally look like my face has been punched repeatedly. I've lost so much weight it's getting alarming. The prednisone could be causing it- because it upsets my tummy, but 30lbs is crazy. I'm getting skeletal looking again. I've done all these searches on the internet, and there are tons of undiagnosed people with the same symptoms posting frustratingly. Edited November 5, 2013 by D-Lish Link to post Share on other sites
FitChick Posted November 5, 2013 Share Posted November 5, 2013 Maybe see a naturopath or Chinese medicine doctor since conventional medicine isn't helping you. Even a couple of sessions of acupuncture might help to balance the energies. 2 Link to post Share on other sites
Author D-Lish Posted November 5, 2013 Author Share Posted November 5, 2013 Maybe see a naturopath or Chinese medicine doctor since conventional medicine isn't helping you. Even a couple of sessions of acupuncture might help to balance the energies. Yeah, I am going to try that tomorrow. So disheartening that I read the internet and so many people have the same reaction and zero answers. Dr's have no answers... Test after test, visit after visit- they treat the manifesting symptom and it goes away for a few days, then comes back full force. I'm logging what I eat, haven't worn make up since this started- I sometimes don't eat for days because I'm so afraid to poke the issue. Seems like I am allergic to something- but I can't find the trigger and nothing registers on an allergy test. Allergist thinks it's stress related, Internist doesn't think so. I was calmer than ever when I launched into full blown anaphylaxis - just settling into my wellbutrin which made me feel so much better. They thought the wellbutrin was a trigger- but I have been off it for a month and i'm no better- and experiencing severe anxiety and depression again. I'm a physical and mental mess over this. Link to post Share on other sites
whichwayisup Posted November 5, 2013 Share Posted November 5, 2013 God I wish I had a magic wand to make it all go away for you. And of course to find out wtf it is! Link to post Share on other sites
Author D-Lish Posted November 5, 2013 Author Share Posted November 5, 2013 God I wish I had a magic wand to make it all go away for you. And of course to find out wtf it is! Me too Mea. It's bloody irony that I finally found a med that worked so well for me- for my depression and anxiety- and I had to go off it because of an allergic reaction. I feel like I want to be happy and well, but I'm allergic to it, lol. I don't think I'm allergic to wellbutrin, I've been off it for over a month and the condition still feels actively chronic. I haven't called in sick to work in over 20 years- but I had to cancel my shifts last week because my face looks like someone beat the crap out of me. Link to post Share on other sites
mea_M Posted November 5, 2013 Share Posted November 5, 2013 Me too Mea. It's bloody irony that I finally found a med that worked so well for me- for my depression and anxiety- and I had to go off it because of an allergic reaction. I feel like I want to be happy and well, but I'm allergic to it, lol. I don't think I'm allergic to wellbutrin, I've been off it for over a month and the condition still feels actively chronic. I haven't called in sick to work in over 20 years- but I had to cancel my shifts last week because my face looks like someone beat the crap out of me. I'm so sorry D. Hang in there girl. I know that is easier said then done. Do keep the pressure on these docs to reach a diagnosis. Sadly, we really have to be our own voice. It does not surprise me that you were told your symptoms were stress related. After my nightmare, I think that's what they say when they can't figure it out. Its a cop out and very unprofessional. Stand your ground, do your homework and with any luck an answer will come soon. Then when you look back, you will see the worst part was not knowing. Big hugs. Mea:love: Link to post Share on other sites
SerCay Posted November 5, 2013 Share Posted November 5, 2013 A friend of mine had been having skin diseases (multiple and changing all the time) since she was 2... Her parents have traveled the world with her to find out what was wrong and no doctor could find anything. Then she started eating the vegan diet...no dairy no eggs, no sugar, just vegetables and fruits and some nuts..her skin cleared up within a month. strongly suggest you try this.. (its not propaganda its a true story, Im not a vegan myself) Link to post Share on other sites
esteem-jam Posted November 5, 2013 Share Posted November 5, 2013 From someone who has hollow-ish eyes and "bags" depending on circumstances... Maybe you spend too much time looking in the monitor? I know it has an effect on my eyes... just yesterday watched a 2h movie before sleep and feeling the consequences today. Know yourself, judge by yourself. (your post count is a hint to me, thats the first way I would point) Has some of the doctors checked your kidneys? There is some connection with swollen eyes and kidney problems. 1 Link to post Share on other sites
CarrieT Posted November 7, 2013 Share Posted November 7, 2013 D-Lish, I talked to my partner about this (a rather brilliant ophthalmologist) and he has told me about a specially virulent form of conjunctivitis that has been going around. It has been so bad that he - along with a number of prominent eye surgeons - have been taking samples for testing as standard treatments have not been effective. He has had three cases this week and one patient has lost their vision in one eye, so this is VERY serious. In some cases it expands to bacterial infections and in others, viral infections. I'm not sure if you are seeing an optometrist or ophthalmologist, but I would forgo holistic and Oriental therapies and demand to see a specialist as soon as possible. It could be far more serious than just simple allergies. Link to post Share on other sites
Author D-Lish Posted November 22, 2013 Author Share Posted November 22, 2013 (edited) D-Lish, I talked to my partner about this (a rather brilliant ophthalmologist) and he has told me about a specially virulent form of conjunctivitis that has been going around. It has been so bad that he - along with a number of prominent eye surgeons - have been taking samples for testing as standard treatments have not been effective. He has had three cases this week and one patient has lost their vision in one eye, so this is VERY serious. In some cases it expands to bacterial infections and in others, viral infections. I'm not sure if you are seeing an optometrist or ophthalmologist, but I would forgo holistic and Oriental therapies and demand to see a specialist as soon as possible. It could be far more serious than just simple allergies. Thanks CT- I saw an optometrist this morning and had my eyes checked. I've been having so much pain in my eye sockets, sinus area, and so much eye strain- that I wondered if my eyes are the cause of my problem, or a secondary manifestation of a primary condition. She checked my eyes for health problems and didn't see anything out of the ordinary besides a need for glasses. I don't know if eye strain can cause such severe symptoms. I had emergency dental surgery after I first posted- because I had an abscessed tooth I wasn't aware of. My condition cleared up right after that for about a week- so I thought it was tooth related- but it came back the last couple days again with a vengeance. Bright red, hot, prickly, painful swollen red patches that start off underneath my eyes and as I know from the past pattern, I will be in emerge in a few days and need prednisone again because my eyes will turn purple and swell shut. I am at that point where I am afraid to consume anything because I don't know if it's an allergy to food. I am existing on water and grapefruit. I wonder if it could be aspartame as I did have a couple diet pepsi's the past few days. I am also dizzy and nauseous a lot of the time. On good days, I function fine. Today was a really bad day, I was driving and had to pull over because I felt to nauseous. If I stand up too fast I start to pass out. My family doc just keeps fluffing me off like I'm over reacting. It's very frustrating- such a long waiting time to see specialists. Edited November 22, 2013 by D-Lish Link to post Share on other sites
whichwayisup Posted November 22, 2013 Share Posted November 22, 2013 Ophthalmologist or optometrist? Optometrists are not specialized, they can do basic tests, but ophthalmologists are specialized and can do more testing, and it's covered, though your family dr needs to refer you. (though I'm sure you know that already..) This has to be a food allergy or something air born. Keep on antibotics for that tooth infection. And yes, quit diet pops!! Just read how people are reacting badly to it as well as sweetners, splenda etc... don't let your family dr brush you off. Keep going and if she/he isn't doing it for you, find another Dr! Link to post Share on other sites
FitChick Posted November 22, 2013 Share Posted November 22, 2013 My family doc just keeps fluffing me off like I'm over reacting. It's very frustrating- such a long waiting time to see specialists. She is in Canada. Our future with Obamacare? Link to post Share on other sites
Author D-Lish Posted November 22, 2013 Author Share Posted November 22, 2013 From someone who has hollow-ish eyes and "bags" depending on circumstances... Maybe you spend too much time looking in the monitor? I know it has an effect on my eyes... just yesterday watched a 2h movie before sleep and feeling the consequences today. Know yourself, judge by yourself. (your post count is a hint to me, thats the first way I would point) Has some of the doctors checked your kidneys? There is some connection with swollen eyes and kidney problems. Kidneys not checked yet- but that's on the list of things to check. I pee regularly, stay hydrated, and don't get UTI's or bladder infections. I do know there is a connection though. Link to post Share on other sites
whichwayisup Posted November 22, 2013 Share Posted November 22, 2013 She is in Canada. Our future with Obamacare? I know. I am too. D, the fact that you felt better for a week, this could be tooth related, infections can do funky things to the body (and of course that evil diet cola's!)! Link to post Share on other sites
Author D-Lish Posted November 22, 2013 Author Share Posted November 22, 2013 She is in Canada. Our future with Obamacare? Lol Fitchick;)- I can list so many ways how our health care system is flawed- and I can list other ways in which it works. Our system is imperfect for sure. It's not structured like Obamacare though- there is a massive difference between what he is trying to implement and what we have going on here in Canada. Specialists take time to see- and it's frustrating. I can call my dr's office, and go in the same day. My issue is that my family doc is not taking my condition seriously- so not making referral to specialists a priority. I got a priority appointment to see an internist because I went to emerge after having to use my epi pen - and through that, I was able to get an immediate appointment with an internist. Canada hasn't got it right with healthcare. It's awesome to show a health card and not have to pay a cent for a visit- but our taxes are high. We have also developed a massive healthcare care debt burden looking after "New Canadians" and their entire extended families since the 80's. I won't get into that though- not on this thread. Link to post Share on other sites
Author D-Lish Posted November 22, 2013 Author Share Posted November 22, 2013 I know. I am too. D, the fact that you felt better for a week, this could be tooth related, infections can do funky things to the body (and of course that evil diet cola's!)! Maybe, I hoped my tooth was the culprit- but it's been yanked- and there was a bad infection- that could have been putting a burden on my kidneys to fight it off for a long time. I am off the Diet Cola's now- lol. We need some new shoes- where is Alphamale? Link to post Share on other sites
esteem-jam Posted November 22, 2013 Share Posted November 22, 2013 I saw some TV show, and the doctors were talking about this condition, I thought "maybe its that thing the chick on the internet has". I think they were talking about this: Angioedema - Wikipedia, the free encyclopedia And as you earlier mentioned, this can be the consequence of that condition (funnily they use the same photo on 2 pages): Anaphylaxis - Wikipedia, the free encyclopedia Link to post Share on other sites
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