Kate2011 Posted November 4, 2011 Report Share Posted November 4, 2011 Hi guys. I'm new to the forum and so forgive me but I may be starting a few different topics. :-/My question is does anyone else have extreme and multiple drug allergies? My doctors said that this could be related to the Dysautonomia but they weren't sure. I'm just curious to see if anyone else is in the same boat. I have allergies to Azithromycin, Levaquin, Trileptal, Minocycline, Amoxicillin, Hydrocodone, Bactrim, Methocarbamol, Meloxicam, and Nitrofurantoin. Basically, I haven't yet found an antibiotic I can take successfully (they tell me the next time I get sick I'll have to try some antibiotics that are only available through IV); I also have a few other more random drug allergies in that list as well. My reactions vary but have gotten more serious as I've gotten older. I've had rashes, swollen hands, hives, breathing problems, and last but not least gone into anaphylactic shock. Can anyone relate? Does anybody know if this is a Dysautonomia thing?~Kate~ Quote Link to comment Share on other sites More sharing options...
Tarastomsgirl Posted November 4, 2011 Report Share Posted November 4, 2011 I had anaphalaxis (sp?) *** Doxycycline and a severely bad reaction with prednisone. I am also allergic to GI cocktail and unless I'm taking a childrens dosage of most all medications I feel terrible and its usually too much.. I tell docs this all the time in the ER or when I'm new and they never listen to me they think I'm nuts.. They listened tho when I went into adrenial failure on only 10 mg of prednisone Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 4, 2011 Report Share Posted November 4, 2011 I also have several severe drug allergies (we are just starting to investigate root causes for me). I was told in high school not to travel outside the US or Europe due to the limited antibiotics I can take. Have you been evaluated for mast cell disorders, specifically mast cell activation disorder (MCAD)? It sounds like it could be a worthwhile investigation given your severe allergies and the fact that you are about to run out of antibiotic options which isn't too good. Quote Link to comment Share on other sites More sharing options...
Tarastomsgirl Posted November 4, 2011 Report Share Posted November 4, 2011 I also have several severe drug allergies (we are just starting to investigate root causes for me). I was told in high school not to travel outside the US or Europe due to the limited antibiotics I can take. Have you been evaluated for mast cell disorders, specifically mast cell activation disorder (MCAD)? It sounds like it could be a worthwhile investigation given your severe allergies and the fact that you are about to run out of antibiotic options which isn't too good.My dysautonomia started after I went to Mexico for my honeymoon. I never drank the water or ate but less than 2 weeks after I came back I was so sick I couldn't get out of bed for 5 months.. *que in undiagnosed dysautonomia* they think i caught a virus while out of the country that trigged all of this in me Quote Link to comment Share on other sites More sharing options...
Kate2011 Posted November 4, 2011 Author Report Share Posted November 4, 2011 wow ya I haven't been evaluated for mast cell disorders. I think it's probably a good thing to ask about though. I am really getting nervous you know? I'm 22 and the list seems to keep growing and growing. Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted November 5, 2011 Report Share Posted November 5, 2011 I started with anaphylaxis that wouldn't settle so was limited in mobility for months then had sudden onset POTS symptoms and adrenals wouldn't wake up during steroid taper. Tried florinef---major rash on top of everything. So its a confusing picture of definite allergies/mast cell issues +/- dysautonomia among other things.What are your dysautonomia symptoms? Quote Link to comment Share on other sites More sharing options...
Kate2011 Posted November 5, 2011 Author Report Share Posted November 5, 2011 I have a bunch of random dysautonomia symptoms. My digestive system is absolutely useless, I have IBS and acid-reflux (I'm still getting more gastro tests though so I could be diagnosed with something else in that area, but hopefully that's it). I'm lightheaded and nauseous most of the time. I have a lot of fatigue, I sleep about 9 or 10 hours a day when I can. Orthostatic Intolerance, with a tendency towards passing out. Diplopia (double vision). Raynaud's (sp?). Cold Urticaria (my doc thinks that's related...it's an allergy to cold (no I'm not kidding they diagnosed me with an ice cube). A diagnosed "weak immune system", but no autoimmune disorders (although I'm not sure if that is related to dysautonomia). A pretty constant elevated pulse rate. And varying degrees of low BP (my lowest was 60/40, normally it's about 88/?). I haven't been diagnosed with a specific kind of dysautonomia yet, and I'm still having tests run and treatments administered. Oh and all the allergies of course if that's part of it, I'm new to the world of dysautonomia (I was only diagnosed 9 months ago). Also, I left steroids off the list of allergies because they're just a sensitivity but it's severe enough that I avoid those like the plague as well. I'm just greatful that my symptoms aren't as bad as some of those I've seen on this site.Currently I'm on Midodrine 3x daily, Dexilant, and Amitiza. I'm also on a gluten-free diet and a kind of dysautonomia meal plan (small meals 6 times daily, no alcohol, caffeine, protein with each meal, increased salt intake). I wear compression stockings and have an abdominal binder I'm not too fond of. I try do leg presses and ride a recumbent bike as often as I can too. Gotta admit I miss running though. :-/ Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted November 5, 2011 Report Share Posted November 5, 2011 I am also 22 and seem to be getting worse as well. After I had my daughter (she is 20 months) my body gave out and now I have a terrible immune system. I have tested positive multiple times for ANA and my rheme couldnt find anything.I also just started to get med allergies that I have never had in the past. I just had a UTI and had to go through 3 antibiotics because of pretty severe reactions. Weird thing is that I never had a problem with meds (other than more sensitive) before. This last year has been horrible for some reason to the point I cant get off the couch. I feel like I am chronically dizzy and only stand for 3 mins at a time or I will pass out. UGH I am at a loss right now! Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted November 5, 2011 Report Share Posted November 5, 2011 I have a long, long list of medication allergies that I developed more than 10 years ago. Most of mine are to antibiotics. I have two I can safely take, but one has a black box warning by the FDA and is only for last resort (Ketek). I know one of our other members, Michele, hasn't chimed in, but she definitely has really struggled with crazy allergies too. (I think her screen name here was mkoven).Nina Quote Link to comment Share on other sites More sharing options...
gertie Posted November 5, 2011 Report Share Posted November 5, 2011 Kate, Ditto everything you said. My Dr's have given up on finding any antibiotic I can tolerate as well as most other meds.I don't know if it's Dysautonomia related or not. I do know I was able to take an antibiotic occ before I had Dys.I'm in my late 60's & I know the time is near I will have to have an antibiotic to live. It's very scarey. Quote Link to comment Share on other sites More sharing options...
Kate2011 Posted November 6, 2011 Author Report Share Posted November 6, 2011 Hmm that's all very interesting. Ya I'm not exactly sure. See my allergies have been consistent, I had my first allergy at 18 months and they haven't really stopped since then. Maybe it's not related since I didn't have all the other symptoms back then. Oh, and this is random but does anyone know if dysautonomia is something you are born with that then worsens or something that develops? I ask because I'm kind of been "odd" my whole life (digestive issues, allergies, urticaria, double vision, even occasional fainting) but it didn't get really debilitating until I was about 16. Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 6, 2011 Report Share Posted November 6, 2011 Kate2011,Dysautonomia can be either...inherited (although this seems to be hard to prove, maybe ernie might be able to chime in if he reads this) or it can be caused by a specific event like illness, trauma, surgery. I have had some features since childhood but I didn't have disabling symptoms until I contracted some tick-borne illnesses. Since, then I have been seriously ill. There is also some family history but no one else was ever diagnosed so we can only go on assumptions about it now we are aware of what dysautonomia looks like.Katie Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted November 6, 2011 Report Share Posted November 6, 2011 Kate, my allergy development seems to go in waves. I have months or even years between runs of time where nearly anything I put in my mouth or am given IV sets off a terrible reaction--and then periods of calm between; I was able to retry some drugs, with them now causing hives instead of a full blown anaphylaxis--so it does expand some of my options as long as I can also take benedryl and steroids at the same time. Anything I reacted to via IV has never been able to be safely used again.Nina Quote Link to comment Share on other sites More sharing options...
Kate2011 Posted November 7, 2011 Author Report Share Posted November 7, 2011 See we actually tried steroids to bring me down from an allergy once and though I'm not allergic I have really bad reactions to steroids. I get incredible mood swings, laughing hysterically one minute, sobbing the next. I even hit a classmate when I went to get my homework from math class. It was completely insane. I'm hoping there are other options because I'm really not able to function when I'm on steroids. Quote Link to comment Share on other sites More sharing options...
handmadebyemy Posted November 8, 2011 Report Share Posted November 8, 2011 Have you gone for allergy testing? They can test you for antibiotics to see how much your body can tolerate of certain medications. I also have a long list of antibiotic allergies. I'm going for testing this month. I was hospitalized in April for a kidney infection and had 4 or 5 different reactions to antibiotics - it was really scary. So I'm getting tested to see how much I can safely tolerate in case I'm ever in that situation again, the doctors will know for sure what I can tolerate (maybe just a rash) as opposed to what will kill me! I was glad that one of my doctors explained to me that even if your body reacts to a medication, the medication still does its job and kills the infection. So for your more mild reactions you may just have to take benadryl with every dose (which in my opinion is better than being stuck in the hospital with an IV!) Quote Link to comment Share on other sites More sharing options...
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