Chemical sensitivity worsening :(

[Nomad]

Elija, jazz, iRish..others...
Will go back and read...but I'm a little sick today and moving slow.
I've had the weirdest problem for several years.
Whenever we visit family in central fla. I often get sick.  I get upper respitory congestion that can lead to an infection. We stay at the same place every time. no one else gets sick.  Then I'm around little kids, so am exposed to germs. 
I've been able to improve upon the situation by taking precautions.
BUT, last visit, I noticed I felt a little better with the window open.
Is this perhaps the type of thing you are taking about? Could the furniture (for example) inside the apartment be bothering me?
Will read the links when I feel better...I rarely get sick like this elsewhere.

[Nomad]

I purchased two snake plants aka mother in law plants. They are said to filter all sorts of nasty toxins in the air. They are also nicknamed bedroom plants because of this.
I'm optimistic.
Feeling better.

[eija]

Aaaagghh it's been crazy couple of days again!

On Friday daughter had a few friends over for her birthday. They know I'm sensitive to chemicals and daughter had reminded them about it when inviting. One of the girls stayed for the night and another "forgot" to leave in decent time so I drove her home. When leaving I noticed a scent in the air so I took a scarf to keep over my nose, and kept the car window open. That didn't help. I coughed so hard I could feel my back muscles get torn in zillion pieces! Finally we realized with my daughter that it was the girl who was staying over - a smell of washing detergent in her clothes...

Then yesterday I had to go to my sister because she had serious trouble (she has severe MS and she got some kind of a cramp). She smokes at home, under the cooker hood. The house doesn't smell very bad, but I noticed the smell right when enterin. No problem from that. Slight coughing when she had a smoke when I was in the kitchen too - for the next one I stepped outside.

Then we ordered some food. I took a chicken kebab with french fries (yeah, health food, indeed  ) and even coke on top of it! It was good but I couldn't eat it all, because it was swimming in curry powder! Also the side sallad was with vinegar dressing.

When I drove home I started coughing. A lot. And I could still feel the curry, I felt like I was breathing it! My throat started to feel raw.

At home I tried eating something to dilute the curry, with no avail. Also, I looked up the histamine foods - CURRY IS HIGH WITH HISTAMINE  also potatoes, vinegar, coke, chicken... ouch!

Today my throat still feels raw and im cough-y. Just wondering if I'm coming down with the cold my daughter had last week, or is it the crappy food and/or all the coughing that has damaged my throat? I don't feel like having a cold.

mbr22m
I'm in Finland, so an US website doesn't really help me At the moment I don't have problems with my own products but with what others wear. I've been forced to be careful with my own products already since I was a teen and before. About the ELISA test... the public health care doesn't perform those tests here. There is one private clinic that does, so I guess I need to count my pennies and go there if this saga continues worsening The "normal" allergy tests show nothing for me.

Nomad
It may be that the house you're visiting has something wrong with it - like mold in the structures. Other's don't get sick (yet) because they're not as sensitive as you are. Being exposed to mold usually gets worse and worse over time and gradually leads to other serious problems. Maybe it would be in order to consider another place to stay in the next time you go there...

The entire histamine sensitivity and MCAS issue is soooooooo complex I get totally overwhelmed when reading about it. Even the lists about foods with high levels of histamine contradict each other. So I guess it's a trial and error here, and I'm so not good at it.

I take my antihistamine in the "morning" (that is, when I wake up in the afternoon  ) If i'm having a bad day and/or extra exposure for chemicals/histamine foods, would it help to take another antihistamine in the evening?

I think I need to start another thread concerning just the MCAS...

[mbr22m]

Do you have a HEPA filter at home? I live in FL and had to get one for our AC. They also sell small, inexpensive hepa air purifiers for your bedroom so you can at least have one while you sleep.
For the Elisa act test,  I had to save up to because my insurance wouldn't cover it, but it's worth it once you find out.  I also had a strong Igg reaction to xylitol!   

[cccourt1942]

Eija,
    I feel your discomforts.  There have been so many comments and suggestions on this thread, I vacillated between commenting or keeping quiet.
    You are young.  I recall (and you will remember I remember ) when you were still riding + caring for your horses.  The reason it stuck with me is I have a classmate (I mean since Kindergarten) who lives in our hometown; she has Sjogren's too.  AND ..she is down to two horses and a donkey...and no help.  We have mild winters in Texas...she is in the gulf coast region and I live in N. Texas now...but as you know, care is necessary daily all year long.  She does wear goggles.  But for the life of me, I can't believe she has no breathing issues.  She will complain of sneezing attacks, but usually in the evening.  She lives in an old home where she has lived for decades.  I've wondered how both of you could tolerate reactions to oats, hay, etc.  Not to mention dirt and unfinished wood in barns , etc.
    And then me.  I was told decades ago the reason people have such a time with allergies is they change so often.  Those who have shots, or take antihistamines, can get some relief some of the time.  When my dry mouth escalated (in my 60s) I cut my antihistamines in half...and believe it or not...it helped.  FYI: I took a daily antihistamine for about 40 years---except for two short periods I was on allergy shots.

    Enough about that...I am not gonna tell you my allergy and sensitivity history.  I am going to tell you I recently made three trips back to the gulf coast within 11 days.  Yes.  I stayed with a friend who is an auctioneer and holds estate sales.  One evening we walked out to go eat...and  my body was swarmed with mosquitoes.  btw:  My small area north of Dallas HAS found zika.  So I'm a bit nervous.  My ankles and top of my feet were covered in bites which were rising like boils.  THEN my forehead began this intolerable itching.  Two bites and I looked macrocephalic.  (no offense)   I told her to go by a drugstore...and she said to check in her console of the car...and if I couldn't find Benadryl she had some in her purse.  We arrived at restaurant...and she retrieved TWO Benadryl packages:  a bottle and a blister  pack of them.  I didn't even ask why.  I popped a couple....and within a half hour all but one on my ankle had diminished in size and itchiness.  We got back to her home, and she started sneezing.  BY HER SINK in the kitchen there  was a blister pack.  Went to her sitting room and by the chair I sat in another blister pack.  I finally asked.  She said from working in the houses where they have to go through EVERYTHING and once finished, sit in the house for 2 days to sell it all.  They wash bed linens in the house if they are salvageable, otherwise ...everything is as is.  She told me they ALL (this means nationalities, races and ages) pop Benadryl all day long all the time.  THEN...I realized she was  a throat "clearer".  I had told her about using mucinex like we do...but she said it was just something she "had".  Well yeah:  allergies to dust.  The thing she told me is the worst culprit is upholstered items.  Unless these forms of furniture (this includes our mattresses) are vacuumed (with a strong vacuum) regularly to keep the "top layer" of dust off/out, they are toxic to people like us. 
     I built two energy efficient homes in a 20 year period.  The first I had carpet in part of the master br and in the master closet.  The second one...zero carpet.  Then I moved to an old home...and began just getting carpeting and old window covering out of the house.  I cannot get all the stuff out of the walls...but I did have my vents , return air, and the A/C ducting cleaned and "cleaned for mold/mildew" (who will ever know?).  I have not suffered as badly as I tht I would here re: allergies.  the thing is...now dxed with SjS I tht it was because I had less mucosa period.  Doctors say no.

The hypersensitivity?  That's another can of worms.  For years I tht that's what made my eyes hurt.  I haven't smelled in years.  BUT..I can feel sensitivities to allergens in my eyes.  Good thing we have tons of eye treatments at our fingertips. 

The bottom line: you can take Benadryl or other antihistamine but then?  You will suffer the drying effects -> more water consumption -> up all night peeing -> miserably tired the next day and then start all over.   My friend swears by goggles...but that doesn't save your bronchioles and lungs.  The thing is, I have  yet to find an ENT who understands SjS enough to mention this topic.  So...I live with it.  At age 74 all my symptoms are decreased.  I honestly believe it is because I don't work in schools anymore and I am seldom in crowds.  Hard to do when you are still raising children, and managing a home.  AND cooking for them.  Oh my. 

Good luck...hope this doesn't depress you,
Sjoldier c3

[Nomad]

We do have a fancy air purifier for the bedroom there, but I have a cheaper one in another room, that I think I actually prefer.  Both have HEPA filters.  I do better when I run them all the time.

AND at one point I had a huge fern plant and I do believe I did a little better when the plant was there.

I have a brown thumb and the plant died. 

Now, I have these two other plants with me in my bedroom back home.  It is amazing to read how certain plants are well known for cleaning toxins in the air.  I will try to post a link.
I will take them with me when I visit again as well as run the heap filters 24/7.

Mosquitos love me and this summer I've been scrubbing myself like crazy in the shower because I understand they like perspiration, so I figure if one misses a spot, they will zero in on it. I also had my yard sprayed monthly this summer. If I'm going out, I spray my arms and legs lightly with a natural product and give a quick tiny suirt on my clothing with a DEET product.  Last summer, I got badly bitten, had bad welts, and had to use a strong cortisone cream and take Benedryl. My bad reactions seem to be worsening?

This topic is very interesting. I read some of the links and will read more.  Thank you.

Might be of some help to someone:
https://en.m.wikipedia.org/wiki/NASA_Clean_Air_Study

[irish]

It might be wise to purchase some of the face masks--like surgical masks and wear them when you go outside or to suspect places. I wear masks a lot. I assume that anything near gardens will have bacteria and molds, mildew, etc and don't even chance going without a mask. I have an immune deficiency anyway so don't want an infection.

In this day and age people don't pay much attention when someone wears a mask as so many people on chemo for cancer need to wear a mask. I carry masks in my car so I always have one and sometimes I even fold one up and put it in my jean pocket if I am going somewhere that could seem like trouble. Good luck. Irish

[jazzlover]

I also have a few masks and keep one in the car.

As for the curry... Look up salicylates. Sals cause asthma for me. It's  a known cause of asthma and some have Samter's Triad. You can look that one up too.

[Sharon]

So many of us suffering from chemical sensitivities
I always wonder is this part of SJS or a separate disorder such as MCAD?
I'm still awaiting my appointment to get properly diagnosed for mast cell disorder.

As far as allergic symptoms in a particular house/room, there are many allergens indoors
from formaldehyde offgassing, mold and more. Airing out  the house does help as does other things
mentioned in this thread such as specific plants and a good air purifier like IQair.
What helps the most is figuring out what you're allergic/hypersensitive to.
Allergy testing doesn't always show this as we don't always have "normal allergies" behind these symptoms.

Eliminating a source of formaldehyde solved my intermittant eyelid swelling and drooping problem
and cleaning an air conditioned of mold has improved my red eyes symptom at work.

[jazzlover]

I think MCAD has many possible causes. If we are damaged by chemicals or mold or bacteria, then we can get MCAD and/or Sjogren's. Something has to "trigger" the DNA. When that happens, we can end up with many different illnesses or autoimmune problems.

[gurs]

I have the same issues..this summer heat does a number on me. Im usually in bed the entire summer..Winter is much better for me. Im looking into a home air cleaning unit right now. I heard of one that attaches to your HVAC with an ultra-violet light.
I cant take antihistimes, only a few natural supplements that are less drying. Im on 12mg of steroids daily, but they don't seem to help much, though, without them, would probably be much worse.

Guess we need to live in glass bubble as they say..

I hope you can find some answers.

Gursie

[Sharon]

Jazz- either that or the other way around: SJS could trigger the MCAD....

Gursie- Can't believe even steroids don't eliminate this issue!
I can't take the anti-histamines either, though the times I've tried they didn't help much anyway.

[jazzlover]

Jazz- either that or the other way around: SJS could trigger the MCAD....

-
For me personally, I think my Lyme disease caused both.

[jazzlover]

Im looking into a home air cleaning unit right now. I heard of one that attaches to your HVAC with an ultra-violet light.

I have one of those. I think it helps kill bacteria and viruses, but mine does not "clean" the air as far as removing particles.

[eija]

I have read all the posts in this thread - thank you everyone.


At the moment I'm so tired and brainfogged and in the middle of life's curve balls that I just can't manage answering. Also, trying to figure out histamine intolerance and MCAS etc just sinked me in a deep desperation. Too much, too difficult. Still considering the doctor issue - I just don't have enough energy for that either!


Maybe some day. Right now I'm just trying to make it day by day.