The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Allergic reaction today- almost went to the ER!!!

Discussion in 'General Symptoms' started by Gingergrrl, Mar 14, 2015.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I am tagging everyone I can think of who are familiar with allergic reactions and hoping to get feedback as to how to figure out the potential cause of my reaction. @justy @zzz @Misfit Toy @Hanna @EMilo @Sushi (I can't remember who else has written about allergic reactions...)

    Basically I was fine this morning but when I took my afternoon meds and supplements with lunch, I immediately got a strong allergic reaction. My face and neck became bright red hot and flushed, my elbows and knees got red and hives on knee and my throat got scratchy. This has never happened to me before although I have had all kinds of other weird reactions to things.

    Last night I had tachycardia in the 160's although I have had so much dysautonomia for two years that it is hard to say that it was related.

    Here is everything that could possibly be the cause:

    1) Even though they are not new meds, I opened new bottles of Famvir and Armour Thyroid this morning. But I took them both at least 3-4 hours before the reaction.

    2) About a week ago I added Turmeric but it seems late to be having a first reaction now.

    3) I have now been taking a low dose of Valcyte for one month but this also seems late to be having a reaction.

    4) All my other supplements are the same.

    5) I tried a new cream this morning called "Icy Hot" for my neck and arm pain but this was 3-4 hours before the reaction and it contains menthol which is the same ingredient in my pain patches (Salonpas) which I have used for years.

    6) Although this one seems silly, I am mentioning everything I can think of. I was eating some Easter candy with my step-daughter at lunch and within minutes I had the reaction BUT I am not allergic to sugar or chocolate or any of the ingredients. I rarely ever eat candy but I am absolutely not allergic to it or to any food that I know of.

    The reaction was bad very quickly so my husband gave me a Zyrtec which clearly helped. We started to drive to the ER b/c of the red skin, hives, and throat scratchy and called my doctor from the car. I had no itchiness or wheezing and surprisingly no tachycardia. He felt the Zyrtec would help and he said I could also take Benadryl but he was afraid the ER would give me Epinephrine (which is horrible for my tachycardia) and afraid they'd give me IV saline which I had a dangerous reaction to back in Nov.

    By the time we spoke with him, my symptoms were getting better and at present they are 90% gone. I e-mailed him everything that I wrote here so he can help me try to figure out the cause. I am eliminating the Turmeric, Icy Hot cream (and not eating any more candy!) but I REALLY want to continue with the low dose Valcyte. He did not think Valcyte was the problem and was more concerned if anything was different in any of the new meds/bottles that I got from the pharmacy yesterday which made me realize that I had opened new bottles of Famvir and Armour this morning.

    How do I figure this out?!! Do I eliminate every single thing I eat and every med and supplement one by one and then add them back in?!! I cannot eliminate Atenolol or my tachycardia will be out of control and this one was NOT a new bottle and I have taken it for two years with no issues. But I am now looking at everything else with suspicion. This was incredibly scary to not know what caused it. If it was not improving with the Zyrtec, I would have gone to the ER and if it happens again, I still will.

    I am so discouraged that I keep having these set backs with the pinched nerve in my neck and now this (which is even worse!) I tested high for Histamines on blood test but prior to today had never had a reaction like this.

    Thanks to everyone who is still reading.
     
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  2. Kati

    Kati Patient in training

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    So sorry @Gingergrrl glad you got better in the end and avoided the emrgency deptartment.
    i am sorry I have no insight for you as of what may have caused that reaction
    Fingers crossed for you you
    Kati
     
  3. Gingergrrl

    Gingergrrl Senior Member

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    @Kati Thank you and I hate going to the ER with the passion of a thousand red hot burning suns so when the Zyrtec helped and my doctor felt I could wait, I was very relieved. I am just terrified of it happening again b/c I don't know the cause.
     
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  4. Kati

    Kati Patient in training

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    Yeah it's hard to tell. Not knowing is a problem too. :(
    Hopefully you feel ok otherwise (no crash because of the reaction)
     
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  5. Sushi

    Sushi Senior Member Albuquerque

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    @Gingergrrl Why not get a bottle of benadryl as that is more specific for this kind of allergic reaction. It is available as a generic -- often as a sleep remedy.

    Very hard to tell as some reactions are delayed and some are immediate. I suppose there could have been an ingredient in the candy, like a dye?

    Hope it never happens again!
    Sushi
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    @Sushi You are a genius and I actually think I may have reacted to the yellow dye in the Easter candy. I googled this after reading your post and the candy I ate has a yellow dye in it called "yellow #5" or "Tartrazine." On Wikipedia it said this can cause a "pseudo allergy" and that people who react badly to aspirin are more likely to be allergic which is ME!!!

    The reaction literally happened within 1-2 minutes of eating the candy. I rarely ever eat candy and have such a clean diet which I clearly need to go back to!

    If this is the answer and was the cause, it is amazing b/c I can avoid any candy or food with this dye in it for the rest of my life and it means that Valcyte and my meds are okay! The weird thing is that I have eaten this candy in prior years (not recently) and was fine but maybe with ME/CFS, and my now high histamine, I have developed an allergy to it?

    Does anyone know the difference between an allergy and pseudo-allergy? I am tagging @Jonathan Edwards and sincerely apologize for bugging you with this question but would be thrilled to hear your thoughts of what happened to me. I fully understand it is not a diagnosis or medical advice and you can speak in generalities!
     
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  7. Forbin

    Forbin Senior Member

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    I've had VERY similar reactions to a sweetener known as "high fructose corn syrup" (HFCS). I discovered this after drinking a Cherry Coke on an empty stomach in early 1980's. I thought I was having an anaphylactic reaction: red face and chest, pounding heart, sweating, producing large quantities of urine - felt like I was going to die.

    After having less severe reactions to some other foods, I narrowed the culprit (in my case) down to HFCS. My guess is that something to do with ME is causing the body to overreact to HFSC (and possibly to other sugars/sweeteners).

    I think this may cause the body to perceive a significant increase in blood sugar when that is not actually the case. Never-the-less, the body "counters" by releasing a lot of insulin. This causes the normal level of blood sugar to plunge (for real) and then the body compensates for that by releasing adrenalin. The adrenalin causes the flushing, heart pounding, sweating, etc... That's just my best guess from what I've read over the years.

    In my case, I find it suspicious that HFCS was introduced into the food chain in a massive way in the early 1980's, just at the time that I got ill and that the "modern" out breaks were occurring in Lake Tahoe, Canada and New York. The first place HFCS was used in great quantities in the early 80's was in soft drinks. It was later used more generally to sweeten things like candy and it eventually became possible to use it in baked goods.

    Obviously there were earlier ME outbreaks, so I don't think HFCS causes ME. It may just be that some people with ME are susceptible to a kind of hyper reactivity to certain sweeteners. Perhaps it just represents yet another broken feed back loop in ME - or possibly has something to do with "leaky gut."

    Do you have any idea what sweetener was used in the Easter candy you ate?
     
    Last edited: Mar 14, 2015
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  8. Gingergrrl

    Gingergrrl Senior Member

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    Upon further researching of Tartrazine it has been banned in several European countries and other EU countries require warning labels that the US does not (of course not here when there is money to be made...) It is used in soft drinks and many foods including pickles, cheese, cheetos & doritos, (most of which I do not eat!) and it is in many supplements, medications, even including allergy meds and steroids- which are used to prevent allergic reaction!

    Luckily it was not in the generic version of Zyrtec that I took but I am now going to check every med & supplement for this ingredient. I am not on a witch-hunt and don't care about what other people eat, but I now believe that I cannot tolerate this food dye and need to read all labels to avoid it in the future. Ugh.
     
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  9. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    This sounds like a very difficult day, hugs. I'm glad you worked out the cause.

    I get very few true allergy reactions, but due to intolerances I have to read labels and avoid all sorts of colors, flavors, etc., as well as some real foods, spices, etc. It's a real pain.
     
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  10. Gingergrrl

    Gingergrrl Senior Member

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    @WillowJ Thank you and at this point I am assuming it was the Tartrazine b/c it happened within minutes of eating the candy (1-2 min max) and the reaction was so extreme with my face, neck, knees and elbows bright red and the hives and scratchy throat. I know it is possible it was due to something else but now seems unlikely.
     
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  11. Misfit Toy

    Misfit Toy Senior Member

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    Ginger, like everyone else said I think it's kind of hard to know what did it. These kinds of reactions are normal for me except mine present themselves with itching. Last night I went out for a bit and had one piece of pepperoni and I started itching all over.

    I didn't even let it bother me because I'm so used to this happening.

    I would say to not stop everything (or see below what my doc has me do) and especially do not stop atenolol. I would take your medicines and then write down what time you took it. And then see what happens with each medicine and journal about it.

    I would take all of your normal medications that you've been okay with number one. If you have any kind of hunch that something might be doing something then stop it.

    Whenever I have a reaction, my doctor tells me to stop everything for one day. He wants me to give my body a rest and just sort of allow it to reset. I'm to take the normal medications that I've been on for a while. But anything new he says to cool down on. Sometimes he'll have me take charcoal. Or he'll have me take tri-salts. Tri salts calms down any kind of reaction I have especially if it's affecting my stomach. Tri-salts are my friend and they're extremely alkalinizing. They balance your pH.

    As long as you didn't have a full on anaphylactic shock type situation, I don't think it's something to get overly worried about.

    Just keep writing down what time you take something, what it was that you took and your response and even if it's hours later write it down.

    That's the only advice I can give you. I have these types of reactions several times a week.

    I hope you feel better soon and that it doesn't happen anytime soon! Easter candy is hard to resist, dyed eggs and all.
     
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  12. daisybell

    daisybell Senior Member

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    Hi @Gingergrrl
    One of my family is allergic to tartrazine aka E102. It causes hives etc and it sounds to me like that is your culprit. Horrible stuff - it's one of the things I look for on food labels and avoid...
    Glad the reaction is settling down and that its not likely to be a reaction to your meds! Take care.
     
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  13. zzz

    zzz Senior Member

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    I would also think that this would be a good idea, assuming your doctor has no reasons for you not to do this.
    Amazingly good detective work, @Sushi! :jaw-drop: I'm very impressed that you were able to identify the culprit with so little information. :thumbsup:
    Here is a good concise definition:

    Pseudoallergy


    [​IMG] A bodily reaction with symptoms similar to an allergy
    Among the general public, the distinction is rarely made between allergies and pseudoallergies.
    Although pseudoallergies have symptoms very similar to "true" allergies, pseudoallergies are not involved with the immune system. The allergy-like symptoms are not reactions with antibodies, rather, the foods cause the reactions directly. The severity of the reaction depends on the dose.
    Unlike "true" allergies, pseudoallergies do not have a sensitisation phase. Symptoms occur even at the first exposure.
    The following substances are common causal agents of pseudoallergies:

    • Various food additives such as certain colourings and the preservatives benzoic acid and sorbic acid
    • Histamines: Primarily found in fish such as tuna and sardines
    • Biogenous amines are breakdown products of certain food proteins. They are often present in microbe-derived foods like yeast extract. Biogenous amines are also found in foods like chocolate, avocado, and tomatoes.
    • Salicylic acid blocks fermentation and rotting in various fruits and is also present in wine. Salicylate derivatives are used in pharmaceuticals such as aspirin and anti-rheumatism drugs.

    I think that that's a very safe assumption, especially since the reaction happened so quickly after eating the candy. As you said, you need to watch your food labels in the future, but I think that the culprit has been found here, and I wouldn't worry about this issue anymore, unless you have a recurrence, which seems extremely unlikely. :)
     
    Last edited: Mar 14, 2015
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  14. Gingergrrl

    Gingergrrl Senior Member

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    Thank you all so much and this feedback has been invaluable to me. I would not have thought of the food dye without Sushi pointing it out b/c I had taken all my lunch supplements and Valcyte within the same hour AND tried the Icy Hot cream. My doctor and I are both 99% convinced it was the Tartrazine and even though I ate a total of two pieces of this candy, they were both bright yellow and must have had a high amount of the dye.

    I have already found it in other food labels in our fridge and was horrified (and the food does not have to be yellow to contain it.) None of my supplements have it BUT other OTC meds have it (for example an OTC anti-diarrhea med that we bought has it.)

    What I cannot figure out is how to tell if a prescription med (like Famvir, Valcyte, etc) has it? The bottles and prescribing info from pharmacy does not list the fillers or dyes. Is there a website with this info? @zzz or @Sushi do you happen to know?
     
  15. Gingergrrl

    Gingergrrl Senior Member

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    @daisybell I feel relieved and validated that I am not the only one (although I am sorry that it happened to your family member!) How did they first make the connection that it was the Tartrazine dye? I read on-line that this dye has been banned in Austria and Norway and contains hardcore safety warnings on products in the EU countries but nothing here in the US. This kind of stuff really irritates me to no end.
     
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  16. Sushi

    Sushi Senior Member Albuquerque

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    You could start with your pharmacist as he/she should be able to look it up.
     
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  17. zzz

    zzz Senior Member

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    The prescribing information for a drug should always contain all ingredients, active and inactive. For example, from the prescribing information, the inactive ingredients in Famvir are hydroxypropyl cellulose, hydroxypropyl methylcellulose, lactose, magnesium stearate, polyethylene glycols, sodium starch glycolate, and titanium dioxide. To find the prescribing information online, simply Google "<drug name> prescribing information".

    You can also Google "<drug name> ingredients", and Google will often precede the Web site listings with a little box that contains all the ingredients for the drug. This is very handy, but it is not always complete; for example, if you Google "Valcyte ingredients", it gives you ingredients for the oral solution (which interestingly enough, contain tutti-frutti flavoring). In these cases, you need to search for the prescribing information.

    Also, if you're using a generic version of a drug, the inactive ingredients may be different from the brand name version. You need to find the manufacturer of the generic version (which will be on the pill bottle) and do a search like the ones above, except including the manufacturer's name. The information may not always be available this way, in which case you would need to call your pharmacist.
     
    Last edited: Mar 14, 2015
  18. Gingergrrl

    Gingergrrl Senior Member

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    @zzz Thank you for that info and tomorrow I am going to Google all my meds (all are generics except Valcyte... and I think there is only one version of Armour Thyroid?) to find the filler ingredients and dyes. I will let you know if I get stuck and need help :D.
     
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  19. daisybell

    daisybell Senior Member

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    My mother has always been very careful to avoid this particular additive, although she tries to avoid most food colourings.. Whenever my younger brother went to a party and had fizzy orange drinks he would be sick! So she quickly figured out that tartrazine was the culprit.
    I look very carefully at all prepared foods that are yellow, orange or red! Actually I rarely buy prepared foods anyway as I am happier making meals from scratch so I know exactly what's in the meal. I grow a lot of my own fruit and veg and have my own chooks. I did this even before I got sick. But I'm lucky in that I don't seem to have any food allergies!
     
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  20. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Make sure to check your food labels and anything you put on yourself, like moisturizers, cosmetics,, toothpaste, etc. for yellow food dye number 5 AND ALL OF IT'S SYNONYMS! This is the voice of experience talking. I found this list of synonyms on a university web site, there may be more:

    FD&C Yellow 5 Food Dye

    Synonyms: Acid Yellow 23; Atul Tartrazine; Tartran Yellow; Tartrazine

    Isn't it nice when a medical problem has a quick and simple solution?

    Hang in there, Gingergrrl. :bouquet:
     
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