Need Help. Not quite sure what to do.

D

dkemppai

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This is a long saga. Not sure where to turn next. Not sure what to do next.

I have allergies. Not the sniffly runny nose type allergies. I'm severely allergic to many things, and quite allergic to many many others. Most are outdoor environmental, grasses, trees, molds, etc. Indoor I'm particularly allergic to dust mites, cats, etc. Allergic responses are typically asthma and breathing problems, weakness and jitters, muscle cramps/spasms, to light headed brain fog/confusion, and extreme anger/rage (This is a weird one, I can only explain it as a flight for fight response where I default to fight). At times I get upper GI discomfort from it that can spill over to heart issues needing steroid treatments.

It's taken years to start sorting this out, and if it weren't for working from home during pandemic I might not have figured it out. Through trial and error, and avoiding places and things I was able to pretty much list out what bothers me. Went to an allergist a a year+ ago, and testing confirmed exactly what I knew already. They even had to test at lower levels of allergens due to reacting severely at the standard levels.

Looking back now, I can remember many times over decades where I've had severe reactions. Most of them were outdoor things. Hunting, deer blinds, working at camp, going for a walk, etc. Even went to the ER a time or two, with 'no issues' found.

I do know the worst for me are molds. The family of molds which are the worst a cool/cold wet weather mold. Around here they grow spring, summer, fall, and even emerge when the snow starts melting. These molds are basically unavoidable, they're part of the natural environment just about everywhere (before anyone suggests moving to a desert, also severely allergic to the dry weather molds too.) The brain fog, confusion, and dizzy is the worst to deal with. Drugs don't touch it. There isn't anything other than getting to a 'clean' environment that stops it. Today outside was particularly bad.

Came to realize that the air system in my truck was growing mold (AC coil). Stripped the whole cabin, disinfected, cleaned, washed everything. Basically down to bare metal in the cabin. Removed, soaked and cleaned and eventually replaced the AC Coil. After all of that, one test drive and I was sick again. With only 80K on the truck, sold it and ordered a new one.

Realized I was having problems in my home office. This is a new house. Stripped the whole office empty and cleaned everything. Eventually found one cabinet that was moved from another house with long since dormant mold growth under it. Removed that, deep cleaned the office and was OK in there after a few days with HEPA filter going. Cut the bottom off the cabinet and replaced it, bleached the whole thing, and sealed it in fresh layers of varnish. Put it back, same problem. Pulled it out and cleaned again problem gone.

The building I work in has mold. We can't find it. We've tried cleaning. Cleaning vinegar, bleach, hepa filters. Nothing seems to stop it. It's way worse when it's windy out. I get maybe an 1-2 hours there before I feel like I drank a six pack or two. I'm basically useless at work.

Deer hunting is a no-go for me. Any sunny windy day in the fall, and I'm done. Heated blind has mold in it, and with open tree stands the wind pulls it off the ground.

Wife's car has something in it. Can't ride or drive that one.

These new houses are very tight, and air exchangers are required. At home when that air exchanger is running and it's bad outside, I start having problems inside. It's particularly bad when that air gets dumped to the basement due to how the system is cycling.

After a year the brand new truck is bothering me now too. I think it's mold in the AC coil or heater box, based on the reaction.

Today, one walk from the house to the shop (50 ft) and back, and I'm just done. Can hardly stand up.

None of this includes the food allergies. Those are a whole different set of issues. However many grains typically have molds, so a big part of that may be natural 'contamination'.

---------------------------------

I'm so done with this. Not sure what else to do.

Been out of state to a specialist clinic. They treat allergies with building allergen doses. Last visit, Dr. there was upset with me (why???), because basically no progress in a year.
Local Dr is trying to get me elsewhere for additional testing. Going to GI specialist in a week, looking for possible issues and maybe autoimmune making allergies worse.
Local Dr is also trying to get me into bigger facilities. Not sure if I can just start cold calling some of the specalists, but considering that. Going to look into getting into any studies/research/trial testing of things.

This weekend, my biggest concern is trying to figure out how to clean the incoming air into the air exchanger in the house. That air exchange is a big issue for me.

Also trying to figure out how to improve the air handling filtration in the air handling system in general. Going to start looking for active electrostatic filtration too, if that's even available on a small scale for homes.

Ideas, thoughts?
 
It sounds like you are working really hard to deal with the external environmental factors to some success.

I would try to reach out to a doctor who is willing to look at three things with you: 1) Gut health [boosts immunity], 2) De-toxifying [using anti-oxidants to improve your liver function] and 3) Addressing inflammation.

All three will likely require a fairly strict diet. I know that I have eliminated almost all sugar, alcohol and processed carbohydrates from my diet and many things both physically and mentally have improved for me over the past four years. The three ingredients I mention above all create major chronic problems with the first three things that are problematic with mycotoxicity.

Not gonna lie, I miss the good stuff to eat and drink, but I don't miss feeling like crap and being depressed because of what I'm putting in my body.
 
Dan,
Well for starts, if the doc at whatever specialty clinic is getting upset with you for no progress, then find a new doc! I do think it is possible that the allergies are triggering some sort of cascade into other problems. So consider looking at some sort of comprehensive evaluation.

Yes, you absolutely can "cold-call" some of the specialists. Insurance is the only real issue, if your insurance plan requires a "referral". Sometimes a referral will get you an earlier appointment. But I have done direct-to-specialist contact, no referral, many times.

Medical problem are just no fun. You need to really fight for your own care, and if one approach/specialist isn't working for you, move on.
 
This may not apply or be helpful to you but here goes. Years ago when my wife and I lived in Southern California, my wife had miserable allergies. Not to the extent of yours but pretty bad and it was constant. Unrelated to that, we moved to WA state. Her allergy symptoms practically disappeared, almost overnight. It has been >2 decades now and her situation is the same. She was allergic to the specific things (pollens, molds etc.) in the environment there but not here.

I wonder if a drier (or just different) climate could help your situation some. I know this might not work for you but I thought I'd mention it because the improvement for my wife was life changing.

( Based on what you said, I would look for a new doc. too... )
 
allergy shots take years to build up to the level where you see an effect. I was told 3-5 years when I started mine. The oral drops are supposed to be quicker, though they're not covered by insurance.

hope you get it figured out, having allergies is no fun.
 
One of my co workers had your type of affliction here, ended up moving to Arizona, he got better there, and moved back. He now resides permanently in Arizona.
 
I was going to suggest exploring a drier climate to live where the molds aren't as prevalent and then Aukai throws out Arizona. That should certainly cut down on the exposure to wet weather molds.

Then you can look at controlling the food allergies through (what sounds like) lifestyle and eating changes.

Moving sucks though, not to mention the expenses involved. But if wet weather mold growth is the main issue, I'd deal with that first, then attack the rest.

But your reactions sound almost life threatening, so moving might be the best option to not cut your lifespan shorter than it should be. Pretty much any ailment will eventually cut years off your life if allowed to persist over time. Our biological systems aren’t invulnerable and the longer they have to cope with something, the more they break down.

Again, moving sucks but sometimes you just gotta do what ya gotta do. The primary reasons may seem to be for yourself, but its also for your wife, your kids, your pets, etc. The longer you make your life last, the longer you can be there help them through thiers.

Maybe try a short vacation trip of a week or two in prospective dry locales and see if that helps and then decide on your best course of action?
 
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vtcnc said:
I would try to reach out to a doctor who is willing to look at three things with you: 1) Gut health [boosts immunity], 2) De-toxifying [using anti-oxidants to improve your liver function] and 3) Addressing inflammation.
Click to expand...

All good points.

We eat well. Spent a lot of years in the gym. The healthy eating stuck with us. There really isn't much 'bad' stuff to pull from the diet. Already avoid a lot of processed foods. Generally get good mix of proteins, fresh veggies, complex carbohydrates. Fats are good quality fats. Have always loved beer and wine, but never drank much and haven't had any in a LONG time (feel like garbage if I do, so just don't. ). No coffee, no tea (feel like garbage with these too. Never tobacco, no illegal substances, etc.

The big one to pull out was wheat. That was huge improvement. Don't think it is celiac, maybe more of an allergy although grains can have molds. Have always limited breads, and it turns out yeast is a known (and tested) issue. Don't do any raw milk products as they bother me (yogurt and cheese are OK). Overall I think the gut health is good. Inflammation, if it does happen I can pretty much attribute to allergen exposure.

Exercise a good bit. Home gym, but more cardo than weights lately. Usually watch TV on an elliptical runner. Try to do three or four, 1.5 to 2.5 hour sessions a week. Walking or running outside is a no-go.

mattthemuppet2 said:
allergy shots take years to build up to the level where you see an effect. I was told 3-5 years when I started mine. The oral drops are supposed to be quicker, though they're not covered by insurance.
Click to expand...
Yes they do. Years ago spent ~2 years getting shots weekly. Eventually, all they did was give grapefruit size welts on each arm every week. They increased the dose, and my reactions just increased with them. The allergist screwed up the dose and hit me WAAY too hard with one batch, and never went back after that.

The current allergist does drops. He did say these molds are very hard to tread and might take 10 years. The last year on drops has been absolutely miserable. The problem is I feel worse than before starting them. Have experimented pausing the doses (under consult with the allergist), and feel MUCH better then.

great white said:
I was going to suggest exploring a drier climate to live where the molds aren't as prevalent and then Aukai throws out Arizona.
...
Moving sucks though, not to mention the expenses involved.
...
Maybe try a short vacation trip of a week or two in prospective dry locales and see if that helps and then decide on your best course of action?
Click to expand...

I've got a buddy in Tx and wife has family in Az. Was thinking about trying those for a bit.

The local Dr suggested moving may be required. I actually broke down when she said that. Spent half our lives saving, planning, building the property here. If we have to leave I don't know if I could handle that.

Does anyone know of any HVAC experts who deal with really good filtration? I'm starting locally, but many of these guys don't know or care to the level I need. I can install, I just need to know WHAT to install.
 
dkemppai said:
All good points.

We eat well. Spent a lot of years in the gym. The healthy eating stuck with us. There really isn't much 'bad' stuff to pull from the diet. Already avoid a lot of processed foods. Generally get good mix of proteins, fresh veggies, complex carbohydrates. Fats are good quality fats. Have always loved beer and wine, but never drank much and haven't had any in a LONG time (feel like garbage if I do, so just don't. ). No coffee, no tea (feel like garbage with these too. Never tobacco, no illegal substances, etc.

The big one to pull out was wheat. That was huge improvement. Don't think it is celiac, maybe more of an allergy although grains can have molds. Have always limited breads, and it turns out yeast is a known (and tested) issue. Don't do any raw milk products as they bother me (yogurt and cheese are OK). Overall I think the gut health is good. Inflammation, if it does happen I can pretty much attribute to allergen exposure.

Exercise a good bit. Home gym, but more cardo than weights lately. Usually watch TV on an elliptical runner. Try to do three or four, 1.5 to 2.5 hour sessions a week. Walking or running outside is a no-go.


Yes they do. Years ago spent ~2 years getting shots weekly. Eventually, all they did was give grapefruit size welts on each arm every week. They increased the dose, and my reactions just increased with them. The allergist screwed up the dose and hit me WAAY too hard with one batch, and never went back after that.

The current allergist does drops. He did say these molds are very hard to tread and might take 10 years. The last year on drops has been absolutely miserable. The problem is I feel worse than before starting them. Have experimented pausing the doses (under consult with the allergist), and feel MUCH better then.



I've got a buddy in Tx and wife has family in Az. Was thinking about trying those for a bit.

The local Dr suggested moving may be required. I actually broke down when she said that. Spent half our lives saving, planning, building the property here. If we have to leave I don't know if I could handle that.

Does anyone know of any HVAC experts who deal with really good filtration? I'm starting locally, but many of these guys don't know or care to the level I need. I can install, I just need to know WHAT to install.
Click to expand...
I know its hard to leave an entire life behind, but what kind of a life is it going to be if you’re sick and in pain for most of it? Or if it ends before it should?

I totally get the starting over issue. 30 years in the military, moved back and forth across the continent every 2-4 years (and pretty much all points in between). Totally sucks and kills your bank account off toute suite!

Life is all that matters. We only get so much time on our clocks. You have to try and make it last as long as you can…for yourself and your family.

You need to do whatever you can to maximize two things in your life: the length of it and the quality of it.

Sometimes that means choices you don’t want to make. Remember its all just “stuff”. You can always get more “stuff”.

I’m sure you already know all this, but sometimes we just need someone else to say it for us.

Grab your wife, take that trip. See if Arizona helps or if theres no difference. If theres no difference, then you will at least know you might as well stay where you are and do the best you can with allergy meds and enhanced filtration….
 
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