Navigation

How to determine cause of allergies and asthma (other than skin pricks and blood work)

I have posted numerous questions to this community and want to again thank you all from the bottom of my heart for your responses and support.

As I had mentioned, other than high blood pressure and cholesterol I was in fairly good health until Dec.22, 2017 when my co-op apartment was exterminated. They used Advion gel in the kitchen and bathroom. The very next day I had a severe allergic and asthmatic attack like I never had before. In fact, I had not had an asthmatic attack for almost 45 years prior to this! I have been to at least SIX!! allergists to get to the bottom of what caused this reaction – roaches? other vermin? the insecticide? Something else? The doctors rarely and barely spent more than 15 minutes with me. Only ONE took a blood test (the one with the IgE numbers). And basically none of them 'had the time' to hear the history of what happened…which I think is quite important to figuring out what the h*ll happened to me. So far these are the diagnoses I got: Allergies, chemical sensitivity, NOT allergies, a sinus infection… I have to add this because I am still in shock: I saw a Dr. Chandler in NYC who LITERALLY said to me 'When I do this [and he put up his index/pointer finger], you stop talking and listen to me'!!!! So help me god, I wanted to tell him 'When I put this finger up [you know the one…next to the pointer finger but its not the thumb], you go 'f' yourself'!. I am a 65 year old woman with a masters degree. I am fairly literate in the the English language and do not have any obvious signs of dementia. How DARE he talk to me like I was some truculent 3 year old that he was trying to control??!!

I really am seriously thinking about somehow checking myself into a hospital so maybe some doctor there can figure out everything.

This is the main issue: WHAT ON EARTH KICKED IN THE ALLERGIC/ASTHMATIC REACTION…THAT I HAVE NOW HAD 24/7 SINCE 12/23/17? THE INSECTICIDE? LIVE OR DEAD ROACHES OR OTHER VERMIN? WHAT???????

The other issue is if NO ONE can say for sure what the cause is, how the h*ll do I get rid of the allergies and asthma??? Half the doctors I saw (including my pcp who is an internest) just gave me medications and inhalers THAT TREAT THE SYMPTOMS!! None of the doctors could tell me WHY the reactions started right after my apartment was exterminated. I want the CAUSE of these new reactions removed, not to live on medication (that doesn't even work!!!) for the rest of my life.

Can anyone suggest how to move forward, in a linear way, to determine the cause of the allergies/asthma, and then how to remove the allergens? Who should I see? What agencies (federal, state, etc.) should I contact? What specialists should I see?, etc. I've been going from allergist to allergist to ENT doctor to my pcp, and I realize I should have seen my regular doctor first, but it is too late for that.

WHERE CAN I GO, WHO CAN I CONTACT WHO CAN DETERMINE WHY MY ALLERGIES AND ASTHMA KICKED IN THE DAY AFTER THE EXTERMINATION?

I apologize for all the caps! I am not 'screaming' I'm just so frustrated that that its my way of venting.

Help please!!

12
44

Comments 12

  • Shea

    Ugh I would get annoyed if a doctor talked like that to me too. You want to find a doctor you are comfortable with. When I go to new doctors, I will bring in a binder and try to get my story fit into a certain amount of minutes and say " I have my 8 minute story i feel is impt.. " and start that way using my binder as a support– because my case is complex but its not just a disease name– i know how my disease came to be and my main triggers as well as the things that now affect my lungs… That is in my story and is important and I think the same is true for you.

    And I feel like you know what triggered the attack (the spray and the roaches).. But now (over a year later) you are still having  symptoms– so WHY? Well I really believe that once something inflames your lungs you have to avoid it ( the spray, avoid roaches), treat the symptoms (difficulty breathing or whatwver they are) and get the inflammation under control, the less inflammation the less sensitive you will be to lung irritants of ALL kinds–allergic and non- allergic (so if you broke your leg fallung diwn stairs yes avoid falling down stairs– but do everything a person with a broken leg would do: crutches, medicine, rehabilitation– it is obvioysly very different with lungs but these inhalers and practices that asthmatics use are supposed to help us heal and do more).

    So your goals involve you finding avoidance strategies (hepa purifier, non-irritating cleaning products, making a reasonable accomodation request to the people in charge about no using that spray), identifying triggers (you can do this by journalling and being familiar with common triggers– noting times of day, or events, weather, dander exposure, chemicals/perfumes… when its worse), and then– however frustrating they are– we need doctors becayse we need to have medicines.. because the most important thing is to be prepared for an attack– so having ur rescue inhaler, and then regular inhalers to stop the inflammation so your lungs can heal, and so you arent sensitive to the things that you used to not be. Chemicals used in cleaning, insecticides, allergens can all be very irritating to asthmatics lungs— I honestly do not think I could survive in an apartment complex with my health currently because I have a severe chronic allergic disease called churg-strauss syndrome and it affects all my organs and is triggered by dander which is so prominant in apartments these days… So I cannot control enough of what is in the air in an apartment unit. Moving may or may not be an option for you– but hepa purifiers in a bedroom that is low-clutter, cleaned with green cleaning products– can help keep a lit of toxins out of your air in the room u spend most your time in. Finding inhalers that do work can be a pain. I have to nebulize mostly.

    It is an experiment and you are the leader and finding what is causing what… Can be frustrating. I feel you! Try to find a nice starting place and know that it is going to be a process… And make a plan with both yourself and your doctors that makes sense to you. I definitely recommend journalling and writing things down. 

  • LK

    PaulaRose,  I know how long you have been dealing with this and how extremely frustrating it is.  Good for you for continuing to look for a doctor or group of doctors who can get your asthma/allergies or whatever else is going on at least partially under control.  You will find a doctor who can help you.

    It is SO frustrating when someone treats you like a child.  I'm in my mid 50s and have a bachelors degree and, like you, am fairly proficient in the English language.  The other day I was on the phone with our prescription insurance and the customer service rep on the other end was just giving me the rote replies.  At one point he told me to "Listen" !  I told him "Don't tell me to listen".  I said "I apologize if I interrupted you, but don't tell me to listen".  

    My own experience – About 5 1/2 yrs ago I just had a chronic cough and would get slightly winded but I attributed it to not really being in shape and being around dusty horse barns and minor allergies.  My PCP internist recommended that I take the Methacholine Challenge Test to see if I had asthma.  By the second level, of the five levels of concentrations of methacholine that you are tested with, I was having serious trouble breathing.  I had never, ever had an asthma attack before so I didn't have any idea what was going on.  The person (respiratory technician ??  )  who was giving me the test stopped and, if I remember correctly, gave me something to help me breathe better and sent me home.  I did not have an inhaler or anything else to ease my breathing.  I didn't realize how poorly I was breathing.  DH, who took me to that test, told me when I came back to the waiting room that I looked "traumatized".    He should've taken me to the ER and not taken me home.  The next day I was working at the therapeutic riding center and one of the students commented that I didn't look so good.  I knew I wasn't feeling well but didn't understand that it was my breathing.  Sounds odd, but true.  Got a referral to a pulmonary specialist and he started me on a variety of asthma meds.  While I wish I could say my asthma is controlled, it is not.

    Turns out I am in the very small percentage of people who react badly to the Methacholine Challenge test.  I understand that because my Dad is a retired anesthesiologist and he said most drugs are safe for about 97 or 98 % of the population.  The other 2 -3 % of folks can have a bad reaction.

    So, all that to say, there is no real way to say WHY I reacted to that and WHY you reacted to the gel in your home.  Why  did I have such a bad reaction to it??  Why do I have to suffer with asthma now??  I, like you, wanted answers and desperately wish we didn't have to deal with asthma/allergies.  It seems so unfair since it was not something we caused.

    So while I wish I had never taken that test I have SLOWLY come to terms with living with asthma and all the things that go with it.  My asthma is NOT controlled and I have symptoms every single day.  

    I have ever so slowly come to the realization that, while I love riding and showing horses and have for a large part of my life, with all the triggers that are at the barn and at horse shows, I am no longer able to take part in those activities.  One of the hardest things for me is that most of my friends are "horse people" and the only times I would see them would be at the barn or at shows.  So not only have am I not able to do the things that I love, I am not able to have the camaraderie of my "horse" friends.

    Guess that is my way of saying that I have finally realized that the ONLY WAY MY ASTHMA WAS GOING TO GET BETTER is for me to avoid as many of my many triggers as possible, even though I am not, as you are not, the one who caused my problems.  I understand that your situation is different in that the triggers are in your home.  Is there any way you can relocate to a different area?

    I am sincerely sorry that you are having such continuous difficulties finding a good doctor.  You may have already answered this in a different post – Is there a teaching hospital anywhere near you that has a good pulmonary department?  

    Hope this long post makes some sense!

  • Paularose

    You both have given me a great deal of feedback and suggestions. I am a bit swamped right now but I will respond more thoroughly tomorrow or Saturday.

    HUGE HUGE THANKS!!!💐🌹🌷

  • Kathy P

    Hugs Paularose – this has been such a frustrating journey and you still have no answers.

    Lisa brought up methacholine challenge – there are provocation tests that can rule in or out asthma. 

    – explains about how sometimes symptoms look like asthma, but it's really something different. 

    Have any of the docs done like spirometry? 

  • Pljohns

    Paularose-are you sure you don't live in AL?  I swear, that sounds like what I've been dealing with for almost 2 years (since my REALLY GOOD pulmo decided to only do sleep disorders and left me with no doctor at all).  I have only had asthma for 8 years now, I'm in my early 50's with tons of medication allergies.  When my pulmo quit seeing asthma patients, I went from one to the other to another to try and find someone that would see me-the SHORTEST wait time was 11 months-even my old pulmo's practice (and I had seen every doctor in the group) was 11 months-new patients 14 months for a new appointment.  When I ask what am I supposed to do if I need something-their reply-go to the ER.  

    I found an asthma clinic at UAB (we have a med school/teaching hospital in town) and finally got a referral, waited 9 months to be seen, spent an entire morning having blood work and pulmonary function tests only to get the rudest doctor I have ever dealt with.  I, like Shea, have a notebook with test results etc in it and I make copies of important tests etc for them to keep.  She didn't even look at them-ask me what I was there for (it's an asthma clinic right??) so I told her adult onset, non-allergic, uncontrolled asthma.  She looked straight at me and said she didn't believe in adult onset and had never heard of non-allergic asthma, so either I had it as a child and my parents ignored it or i didn't have asthma and whoever did my allergy testing didn't do it right.  I about walked out right then.  She went on to tell me she wanted a full cardiac workup, all of these lab tests ($1200 worth), do ANOTHER meth challenge test, a CT and IF all of that came back clear, then she MIGHT consider that I had asthma by the process of elimination.  She said I didn't wheeze and didn't fit the "classic" asthma symptoms so she didn't believe I had asthma.  I have had a full cardiac workup-fine, all of the labwork (which i agreed to just so I would have it)-fine, I REFUSED another meth challenge, CT done 2 months before my visit-fine. Needless to say, I didn't make any appointments to go back and see her.  I have called every pulmo within a 200 mile radius from here and no one will see me because of my odd type of asthma.  The only pulmo that will see me (the one I'm seeing now) isn't a good one, never has any suggestions for things to try-I ALWAYS have to be the one to ask about things and is just not with it but right now, i don't have a choice.  

    I got really sick in Jan and my PCP told me to go to the ER.  I couldn't walk and talk, couldn't walk over about 10 steps without having to stop, was doing nebs around the clock every 3 hours for 2 weeks, added 60 mg pred and was STILL getting worse.  The ER didn't even give me a breathing treatment or anything.  If I hadn't had my own neb and meds with me, I would have been in a mess-and then they refused to admit me because I didn't meet "criteria".  When I ask what that was-you have wheeze, have bad arterial blood gases and noticeable asthma symptoms-they sent me home-AFTER making me sit in a room with chairs and nothing but curtain separating you from the person next to you for 5 hours and ALL of them had the flu.  I ask if there was anyway I could be admitted because I knew from past experiences that I needed IV steroids-they said yep-by ambulance admission only.

    Doctors now-a lot of them anyway-don't want to talk to you, don't want to take the time to figure out what causes things-they just want to throw meds at them and make you go away.  I still don't have a good pulmo but it beats not having one at all I guess.  My PCP won't touch my asthma and no one else will either.  I finally told one of them that I guess I just needed to curl up and die and then no one would have to worry about it.  

    I'm so sorry you have had to deal with all of this and I would be exactly like you-I would want to know WHAT caused that type of reaction so soon after the exterminator was there.  All I can say is don't give up-at some point you will find the right doctor and they will know what to do to give you the answers you deserve.  We're all here for you to vent at anytime you need to.

  • Paularose

    Thank you everyone for responding and suggestions.

    I cannot move so that is why I am so desperate to find out what the extermination (they used a gel) did that screwed up my apartment so horribly. The ENT doctor said it's probably something in the air and it should be tested. I guess that will be my next step.

    Many thanks again!

  • K8sMom2002

    PaulaRose, hugs … you've had quite a frustrating journey. You've had some good advice above, so I won't repeat it.

    I would not AT ALL like a doctor who spoke to me that way. In fact, I've asked for a second opinion after I was spoken to in a manner similar to that.

    There are good doctors out there. The trick is to be patient and get on their waiting lists or schedule an appointment way in the future (they're gonna be booked solid for months) and then figure out, like Lynn has, how to tread water until then. 

    One thing that comes to mind is my own experience with asthma. I wasn't diagnosed with asthma until I was in my 30s. 

    But for me, that first real known flare of asthma was a kind of tipping point. Things that didn't bother me before really bothered me. It's as if my body learned a new trick too well.

    You may not be able to move, but could you take a short vacation? Could you try a weekend away to see if your symptoms improve? If it is something in your apartment, then being away from the trigger should help it. 

  • Paularose
    Pljohns posted:

    Paularose-do you use air purifiers?

    Yes! I have one somewhat large one and one baby one. Totally useless.

  • Paularose
    Pljohns posted:

    Paularose-do you use air purifiers?

    Yes, two useless ones.  One that is about 2 feet high made by Blueair. The baby is about 1.5 feet high from Oreck. They have been on 24/7 since January. No help.

  • Paularose
    K8sMom2002 posted:

    PaulaRose, hugs … you've had quite a frustrating journey. You've had some good advice above, so I won't repeat it.

    I would not AT ALL like a doctor who spoke to me that way. In fact, I've asked for a second opinion after I was spoken to in a manner similar to that.

    There are good doctors out there. The trick is to be patient and get on their waiting lists or schedule an appointment way in the future (they're gonna be booked solid for months) and then figure out, like Lynn has, how to tread water until then. 

    One thing that comes to mind is my own experience with asthma. I wasn't diagnosed with asthma until I was in my 30s. 

    But for me, that first real known flare of asthma was a kind of tipping point. Things that didn't bother me before really bothered me. It's as if my body learned a new trick too well.

    You may not be able to move, but could you take a short vacation? Could you try a weekend away to see if your symptoms improve? If it is something in your apartment, then being away from the trigger should help it. 

    I have spent almost $4000.00 on doctor visits, meds and legal fees (due to having to hire a lawyer to get my co-op's  Board to address the issue.) Money that I don't have much of and was trying to save for when I got really old!😊 So I can't even take a mini vacation. But one of your comments reminded me of something the first allergist said, which was that you could be allergic to something (say, cotton), you've worn it your entire life with no reaction. But later (say 30 years later) you come into something, perhaps a chemical, and BOOM! now you REALLY are reacting to the cotton. True?

  • LK

    PaulaRose,  I am so sorry that you have had to and are still having to deal with your seemingly-uncaring co-op board to get this resolved. 

    That makes a lot of sense about something setting off your body's response to triggers that did not use to bother you.  I haven't seen any actual research on that but that would pretty well describe my asthma.  I won't go into it all again because I think I posted it on one of the other threads.

    I used to be able to drink ice-cold water, breathe strong smells, be in dusty areas, drive down a road without having to have the air on recirculate in my car because of the exhaust smells. sing in church choir, laugh heartily, and other things that now trigger my cough-variant asthma.  Now those things and others make me cough (more than my normal coughing), make my chest feel very tight, and make me very short of breath.  It all came about after the Methocholine Challenge test.