“I’ll take MOLD GOLD for 200 Alex…”
January 19, 2010 7:55 AM Subscribe
So I was told by the doc that I have a SEVERE mold allergy…now what?
So here’s the story. It’s a little convoluted so bear with me.
For the past three years I’ve been treated for Rheumatoid Arthritis. Why? Memory loss, swollen joints, off the charts fatigue, skin issues, groin pain (with aseveral dozen clean STD tests). The treatments have ranged from sulfa (which it turned out I was allergic to) to Enbrel (which did little) to Humira (which did more) and ultimately Remicade (which really helped…right up till I had a reaction to it and it put me in the hospital).
The thing is, the RA diagnosis…well it was never 100%. For ne thing my pains weren’t complimentary. But all the other rheumatoid tests came back negative. No gene for Reiters, no ANA for Lupus, nothing wrong in the bowels for colitis, negative on anything on skin biopsies for Psoriasis. Also throw in tests for anything else that could even be possible. Lyme. Sarcidosis. Testosterone poisoning. (I saw it in a medical journal and asked for a test. At that point I was just thinking “What Would House Do?”) Basically it was RA by default. I had a reasonably high rheumatoid factor and, in the absence of anything else to lean it one way or another, that was the disease. Atypical but possible.
And then I got pneumonia.
Which, in this case was a lucky break. Though not initially. I didn’t realize it for two months. Largely because all my flu and strep tests came back clear and I had good breath sounds. But at some point someone does a chest x-ray, screams, and then puts me on the strongest antibiotics known to man and a whole handful of steroids. Now this kills the pneumonia off but also kills off whatever would protect me from a fungal infection in my throat. So I get one of those. Bad.
Bear with me. We’re almost to the mold.
So the ENT I go to, she puts me on the drugs to kill off the fungus and a week later I come in, boom, back to mostly normal. Except every morning I’m horking up a mucus loogie the size of a trucker’s thumb.
She asks how long I’ve been doing this. I say, at this size, for like a month. She asks how long I’ve been horking up a morning loogie at ANY size. I tell her about 12 years. At this point she asks if I’ve ever had any allergy testing. I tell her no and I start getting a ton of pin pricks in my arm.
And then all hell breaks loose.
Everything mold related they shoot into me to test reactions blows up like horror movie. They have a little measurement circle. 5 is normal. 7 is a reaction. 10 is a big reaction. 12 is a bad reaction. All of mine for mold are solid 20s.
Though American Cockroach was also an 11.
At this point, giving me a handful of Benadryl, my ENT says there’s a good chance I don’t have RA and that all my symptoms are mold-allergy related. I ask how that explains the high rheumatoid factor. She says it’s unusual but not impossible for the reaction to cause that.
Now if my doctor is right, my long term, chronic and mostly untreatable condition is now an allergy that I just have to start taking a lot of shots for. And which I can get all better from.
So here’s my question: is this possible or not?
Basically, for me, this sounds WAY too good to be true. But if it is, it’s about to make my life 100% better fairly soon. Does anyone have any experience in this area?
Additionally, if you have time, here are some followup questions
1) What foods am I not supposed to eat anymore?
2) What foods should I eat more of?
3) Am I supposed to get rid of my memory foam mattress or my down comforter and pillows?
4) Are there any lifestyle changes I should make as one of the newly mold averse?
So here’s the story. It’s a little convoluted so bear with me.
For the past three years I’ve been treated for Rheumatoid Arthritis. Why? Memory loss, swollen joints, off the charts fatigue, skin issues, groin pain (with aseveral dozen clean STD tests). The treatments have ranged from sulfa (which it turned out I was allergic to) to Enbrel (which did little) to Humira (which did more) and ultimately Remicade (which really helped…right up till I had a reaction to it and it put me in the hospital).
The thing is, the RA diagnosis…well it was never 100%. For ne thing my pains weren’t complimentary. But all the other rheumatoid tests came back negative. No gene for Reiters, no ANA for Lupus, nothing wrong in the bowels for colitis, negative on anything on skin biopsies for Psoriasis. Also throw in tests for anything else that could even be possible. Lyme. Sarcidosis. Testosterone poisoning. (I saw it in a medical journal and asked for a test. At that point I was just thinking “What Would House Do?”) Basically it was RA by default. I had a reasonably high rheumatoid factor and, in the absence of anything else to lean it one way or another, that was the disease. Atypical but possible.
And then I got pneumonia.
Which, in this case was a lucky break. Though not initially. I didn’t realize it for two months. Largely because all my flu and strep tests came back clear and I had good breath sounds. But at some point someone does a chest x-ray, screams, and then puts me on the strongest antibiotics known to man and a whole handful of steroids. Now this kills the pneumonia off but also kills off whatever would protect me from a fungal infection in my throat. So I get one of those. Bad.
Bear with me. We’re almost to the mold.
So the ENT I go to, she puts me on the drugs to kill off the fungus and a week later I come in, boom, back to mostly normal. Except every morning I’m horking up a mucus loogie the size of a trucker’s thumb.
She asks how long I’ve been doing this. I say, at this size, for like a month. She asks how long I’ve been horking up a morning loogie at ANY size. I tell her about 12 years. At this point she asks if I’ve ever had any allergy testing. I tell her no and I start getting a ton of pin pricks in my arm.
And then all hell breaks loose.
Everything mold related they shoot into me to test reactions blows up like horror movie. They have a little measurement circle. 5 is normal. 7 is a reaction. 10 is a big reaction. 12 is a bad reaction. All of mine for mold are solid 20s.
Though American Cockroach was also an 11.
At this point, giving me a handful of Benadryl, my ENT says there’s a good chance I don’t have RA and that all my symptoms are mold-allergy related. I ask how that explains the high rheumatoid factor. She says it’s unusual but not impossible for the reaction to cause that.
Now if my doctor is right, my long term, chronic and mostly untreatable condition is now an allergy that I just have to start taking a lot of shots for. And which I can get all better from.
So here’s my question: is this possible or not?
Basically, for me, this sounds WAY too good to be true. But if it is, it’s about to make my life 100% better fairly soon. Does anyone have any experience in this area?
Additionally, if you have time, here are some followup questions
1) What foods am I not supposed to eat anymore?
2) What foods should I eat more of?
3) Am I supposed to get rid of my memory foam mattress or my down comforter and pillows?
4) Are there any lifestyle changes I should make as one of the newly mold averse?
If your ENT is not advising you on these matters, see an allergist.
posted by Wordwoman at 8:24 AM on January 19, 2010
posted by Wordwoman at 8:24 AM on January 19, 2010
Whoa, someone with allergies like yours could die if you did the wrong thing. ASK YOUR DOCTOR THESE QUESTIONS.
posted by damn dirty ape at 8:26 AM on January 19, 2010
posted by damn dirty ape at 8:26 AM on January 19, 2010
I definitely don't have a 20, but my mold allergies are pretty unpleasant. My breathing issues are at their worst when there's leaves rotting on the ground in autumn, and accidentally ingesting even a tiny amount of mold is guaranteed to send me into food-poisoning-style retching for days.
Some things I've done/observed in case it helps you:
- I keep a dehumidifier running non-stop in my basement anytime that isn't the dead of winter, just to try and prevent mold from getting a foothold. I've resealed parts of the bathroom every couple years, because that's the worst part of any house as far as moisture/mold goes (I probably should do it even more often).
- I refuse to eat foods (like cheese) if the taste is even slightly off, and also won't eat leftovers of anything that easily molds. This drives people around me completely insane, because there's "nothing wrong with it" -- but they aren't the ones who will be suffering if it's starting to go and just hasn't shown it yet. Listen to your tongue, and err on the side of caution.
- Dispenser nozzles are your enemy, mold loves to grow on them. If a restaurant doesn't clean their nozzles religiously, you will find out the hard way -- and the mold that grows on ice tea nozzles is particularly nasty. I keep an internal list of what I can drink where, generated through trial and error: I'll try a soft drink at a place, and if I don't get a mildly upset stomach then I know they clean their nozzles well and can get ice tea there from then on.
- The internal bits of coffee makers seem to be even worse, which is why I refuse to drink the stuff at all, period.
posted by Pufferish at 8:37 AM on January 19, 2010 [1 favorite]
Some things I've done/observed in case it helps you:
- I keep a dehumidifier running non-stop in my basement anytime that isn't the dead of winter, just to try and prevent mold from getting a foothold. I've resealed parts of the bathroom every couple years, because that's the worst part of any house as far as moisture/mold goes (I probably should do it even more often).
- I refuse to eat foods (like cheese) if the taste is even slightly off, and also won't eat leftovers of anything that easily molds. This drives people around me completely insane, because there's "nothing wrong with it" -- but they aren't the ones who will be suffering if it's starting to go and just hasn't shown it yet. Listen to your tongue, and err on the side of caution.
- Dispenser nozzles are your enemy, mold loves to grow on them. If a restaurant doesn't clean their nozzles religiously, you will find out the hard way -- and the mold that grows on ice tea nozzles is particularly nasty. I keep an internal list of what I can drink where, generated through trial and error: I'll try a soft drink at a place, and if I don't get a mildly upset stomach then I know they clean their nozzles well and can get ice tea there from then on.
- The internal bits of coffee makers seem to be even worse, which is why I refuse to drink the stuff at all, period.
posted by Pufferish at 8:37 AM on January 19, 2010 [1 favorite]
Your allergist should offer you allergy shots (immunotherapy). Take that offer and run with it. Often, they will give you the option of doing one series of shots a week or two. In your case, do the two per week. Hate needles? Get over it. You will feel better and better as your immunity builds, and eventually you will be able to maintain your regimen at shots every two weeks.
What are the shots? The thing to which you are allergic, albeit in a highly diluted form at first. In my case, my primary allergies are to pollen, to dust mites and (to a lesser extent) to mold. I've been doing immunotherapy since last March. A shot in one arm for pollen, in the other for dust mites. And it really does work to lessen symptoms and to make me less likely to shut down entirely on days when the pollen count is high.
posted by grabbingsand at 8:58 AM on January 19, 2010
What are the shots? The thing to which you are allergic, albeit in a highly diluted form at first. In my case, my primary allergies are to pollen, to dust mites and (to a lesser extent) to mold. I've been doing immunotherapy since last March. A shot in one arm for pollen, in the other for dust mites. And it really does work to lessen symptoms and to make me less likely to shut down entirely on days when the pollen count is high.
posted by grabbingsand at 8:58 AM on January 19, 2010
You might want to see an allergist, rather than an ENT for this, and get your questions answered. For some ENTs, the allergy stuff is a sideline business to make money (the allergy testing and shots are particularly remunerative), not their focus, and it shows. The allergist is board certified (i.e. spent years training in this area, not a weekend seminar) and is likely better able to advise you about all the lifestyle changes, which may include getting rid of carpets, upholstered furniture in your bedroom, washing your sheets in hot water, getting anti-allergy covers for your mattress and pillows, wiping surfaces in your bedroom daily, setting up a dehumidifier, getting rid of cloth drapes and moving things out of your bedroom that can't be wiped down (books, papers), and putting filters over incoming vents.
posted by *s at 9:35 AM on January 19, 2010
posted by *s at 9:35 AM on January 19, 2010
My allergist told me to avoid juices made from concentrate. But really, you need to find a good allergist to deal with this.
posted by Ruki at 10:03 AM on January 19, 2010
posted by Ruki at 10:03 AM on January 19, 2010
IANAD and I don't play one on TV, but I have been living with tons of severe allergies, including mold, for over a decade.
Things I have learned: Cantaloupe, teas, and peanuts all have a lot of mold on them. A HEPA filter is your friend. Allergy shots aren't always effective. Allergy shots can be expensive, even if you have insurance. Benadryl is the exact same drug as sleeping pills, so don't take it if you need to be awake. Vitamin C has antihistamine properties. Quercetin can help with allergies, but it's effect is cumulative - it won't work right away. You can get it as a supplement, and I believe it's also found in apples. Motel rooms can sometimes have really bad mold problems. Doctors rarely do allergy testing unless you demand it. (They will, however, look at your size 2, slim body, and ask you [regarding the symptoms you've had for 2 years], "Are you sure you're not pregnant?") Pseudophedrine can make you gain weight, but they never tell you that. Lemon juice in particular seems to do wonders for allergy symptoms - I've compared notes with other people about this and it seems to be true for all of them.
That's all I can remember at the moment. Most of what people are saying about getting rid of soft furnishings, mattress covers, etc., are really more about dust mites than mold. I live in the humidity capital of the US, the Gulf Coast, and I've never had moldy pillows.
posted by fairywench at 10:38 AM on January 19, 2010 [1 favorite]
Things I have learned: Cantaloupe, teas, and peanuts all have a lot of mold on them. A HEPA filter is your friend. Allergy shots aren't always effective. Allergy shots can be expensive, even if you have insurance. Benadryl is the exact same drug as sleeping pills, so don't take it if you need to be awake. Vitamin C has antihistamine properties. Quercetin can help with allergies, but it's effect is cumulative - it won't work right away. You can get it as a supplement, and I believe it's also found in apples. Motel rooms can sometimes have really bad mold problems. Doctors rarely do allergy testing unless you demand it. (They will, however, look at your size 2, slim body, and ask you [regarding the symptoms you've had for 2 years], "Are you sure you're not pregnant?") Pseudophedrine can make you gain weight, but they never tell you that. Lemon juice in particular seems to do wonders for allergy symptoms - I've compared notes with other people about this and it seems to be true for all of them.
That's all I can remember at the moment. Most of what people are saying about getting rid of soft furnishings, mattress covers, etc., are really more about dust mites than mold. I live in the humidity capital of the US, the Gulf Coast, and I've never had moldy pillows.
posted by fairywench at 10:38 AM on January 19, 2010 [1 favorite]
I have a friend who's very allergic to mold and he had to quit drinking tea. (Which fairywench already mentioned.)
posted by small_ruminant at 11:06 AM on January 19, 2010
posted by small_ruminant at 11:06 AM on January 19, 2010
I've got a mold allergy and am nthing the advice to go to an allergist ASAP, get evaluated, and get allergy shots (grabbingsand is right on the money). I've done pretty well with the shots, and using zyrtec for the occasional mold issues that crop up.
I am nthing that you should ask your questions of the allergist. Some of the replies here are not advice you should follow, or may not apply to you at all, especially some of the the food advice (for example, I have a pretty severe mold allergy and drink tea with no problem). Some of what people are saying applies to dust mites more than mold (most of the stuff about your bedding, for example). With an allergy as severe as yours seems to be, you really should not mess around, and should instead rely on a good allergist.
posted by gudrun at 9:30 PM on January 19, 2010
I am nthing that you should ask your questions of the allergist. Some of the replies here are not advice you should follow, or may not apply to you at all, especially some of the the food advice (for example, I have a pretty severe mold allergy and drink tea with no problem). Some of what people are saying applies to dust mites more than mold (most of the stuff about your bedding, for example). With an allergy as severe as yours seems to be, you really should not mess around, and should instead rely on a good allergist.
posted by gudrun at 9:30 PM on January 19, 2010
This thread is closed to new comments.
posted by Tomorrowful at 8:22 AM on January 19, 2010