OK, my friends who suffer - several of you have asked me to post on how we have recovered. So, here it is... drum roll.....
THE GRABLE RECOVERY PLAN
take one pill and call me in the morning.
Just kidding. If only it were that easy! I'm sure I'll forget a few things, but I'll give it a go and try to list everything. I'd like to insert a caution here - when you are hurting, it can be very tempting to latch onto every success story and attempt to recreate it for yourself. But we are all so very different. Try one thing for a few weeks - if you see nothing change, try something else. You can always come back and try something later as you feel better also - our bodies change as we recover, so something that doesn't seem to work at first may work better as your body starts to work again. The biggest thing is this: I NEVER change more than one thing every 2 weeks. Every time I've tried that, I can never figure out what works, which thing is working... and I end up back at square one,
So, in no particular order, here is what I can think of that has helped us. Wait, that may not be helpful. I'll try to put these in order ;)
- Grain free/dairy free/low sugar whole food diet (this means no grains. No rice. Zero.) (We initially got tested through Enterolab.com, though it became apparent early on that gluten and dairy were problematic) (Several thoughts here.... if you suspect an issue, testing through enterolab is helpful if you test negative on a regular battery of allergy tests - they look for a different type of antibody. Having a positive result on paper can be helpful. I did not get it, but my kids and hubbie did. In case you are wondering if the results are just always positive - we had a WONDERFUL person volunteer to do a control test and she was negative)(If you go off some/all of these, you may want to do one at a time. Don't expect your world to change immediately. Some studies have shown gluten and casein - a dairy protein - antibodies can stick around for up to 1 year.)(You may also notice a cascade effect - you clear your system of gluten and dairy and then notice you start to react to rice. There are many reasons for this, which I can go into if you'd like to email me through the comment section, but this particular section is way longer than I meant it to be!)
- Low stress lifestyle - we all know we need it! Sometimes I make mistakes and get busy, but for the most part, we keep some margin in our lives. Limited media, unlimited outdoors. No over-scheduling. If something stresses us out (including people), we limit it. Outdoors at least once a day.
- Lots of sleep. Early bedtimes. I have a lot of difficulty with sleep, so I often take chamomile tea and/or Benedryl. Or Nyquil. Whatever works, right?
- Throw out the cleaners/fragrances. We use vinegar, baking soda, and peroxide. Kiss my face olive oil soap. Everyday Shea shampoo/conditioner. No hairspray/makeup. Low chem laundry soap. Vinegar if the laundry is rather... odoriferous. Unscented deodorant.
- B12 shots - this was soooo helpful. For three years I had 3 shots per week. Ouch. But our bodies use B12 in huge amounts when under stress, so it really helped when we were trying to figure things out. I'm down to one a month - woot woot!
- Thyroid treatment. Go to a specialist. General doctors/internists for the most part want to help. But they all thought my labs looked fine. I went to a specialist who listened to symptoms, looked at the labs, then gave me thyroid medication. SUCH relief! And go with what your body needs. I really wanted the more "natural" thyroid medication, but they did nothing nado zero zilch for me. I take a T4 medication and a separate T3 medication. My daughters are also getting treatment. Apparently mold and Lymes can both end up in an auto immune thyroid disease. It will never go away for any of us, but it is imminently treatable.
- Leaving mold - and all of our belongings - behind. This involved going to a doctor, an allergist (who was actually a specialist under our insurance!). He gave me a skin test for 15 types of mold (not the skin prick test, but the kind where they inject small amounts under your skin on your arm). I was massively positive for 13 of them. And we lived in an old house that had leaks in the past. NOT good for mold allergies - try living your whole life in old houses with these allergies and imagine the damage that long term inflammation can cause. HAVOC! (why leave the belongings? Long story short - I'm allergic to toxins produced by mold spores. Mold spores have incredibly strong adhesive abilities and some are viable in 2000+ degrees. So, they are everywhere (especially in older houses) and are impossible to remove. We no longer have houseplants since they harbor mold. Our new house has several mold decreasing features.
- Speaking of which, building a house with mold decreasing features, using low chemical features. We have French drains all around the house. We live in the humid south, so we sealed the crawl space and have conditioned airdown there. (the other option is LOTS of ventilation, but the humidity levels made us opt for the other option). We put this cool layer between the house wrap and the siding - water will get through, so this layer gives the water and easy way to exit the house before hitting interior walls. We looked carefully at the land so that our house is not situated in a low spot where water hangs out. We are also buffered (minimal chemical issues from neighbors) on all sides of the house by forest, and the house is in the middle of a sunny field (dries out the water). No big bushes around the foundation to keep mold down. Ummmm... what else? Hardwood floors sealed with water-based poly (oil based can outgas 6-12 months). A top of the line air filtration system that pulls everything out and kills it with UV. And a system maintenance plan to make sure it keeps working! This also turns the air over in the house 8 times per hour, providing lots of fresh air. A fan in the garage provides negative pressure so those gas fumes don't enter the house. Zero VOC paint. NO cabinets (pressed wood has formaldehyde, cabinets provide a great place for mold to hide). We have pedestal sinks and aluminum medicine cabinets in the bathrooms. Metal shelves and shelves made from zero formaldehyde plywood in the kitchen. Insulation in the walls that does not emit anything. No bedroom furniture except beds and metal nightstands. Mattresses that are metal springs, cotton, and wool - no fire retardant. Bedframes made by the dear hubbie from wood and metal. Lots of ceiling fans to move air. Finally got a couch - it has removable slip covers for washing. - minimal cushions in the couch to keep fire retardant down. No pressed wood in our furnishings. Cotton shower curtains. All pillows are feather with no fire retardant, including couch pillows. Our couch is standard Ikea, but it aired out for some time in the garage, and all throw pillows are free of most chemicals - we decided that after a year of recovery, we were strong enough to handle a more standard couch, especially since our bedrooms are so chemical free. No gas or fireplace to keep chemicals down (Wahhhh). We have an induction stove that is super though. The idea throughout the house and for our new belongings was to limit pressed wood and plastic, concentrating on solid wood, metal, glass, and ceramic. Here are some photos:
Now I want a nap!
Yes, those are sweet potatoes. We got a great deal and we love them. Yum.
Note the lower shelves rather than cabinets. I use glass bowls from Ikea as "drawers."
Best. Couch. Ever.
- Mold detox. This consisted of many things, cholestyramine being key for me for 6 months. Also, several supplements have been extremely important (but always stick to the rules - do not add more than one every 2-3 weeks or you may not know what's helping. And these things are EXPENSIVE. Listen to your body. Use what works for YOU. What do we take? Now NAC (most important for us - which I found out after getting off of it, 1 per day), Twinlab Norwegian cod liver oil (8/day), Now Truebalance (1/day), Nature's answer oil of oregano (1/day), Solgar Essential Amino Acid (1/day), Now D3 10000 (1/day), Now E400 (1/day), Now Acetyl L Carnitine (1/day), Jarrow Methyl Folate (1/day), Now C1000 (1/day), Kirkman Lactobacillus (1/day). During heavy detox we also used Paulo D'arco and Milk Thistle. Now I use them 2 months per year. We try to stay away from soy, dairy, and gluten in our supplements.
- Treatment for Lymes. We ended up getting no relief through traditional meds, so ended up using a homeopathic doctor in Atlanta (Longevity). We did treatment for 6 months.
- Avoidance of Triggers. Honestly, if you cannot do this, I'm not sure your body can get calm enough to really recover. We had to do this step before really succeeding with the neural retraining. My hubbie did all the shopping for a while. No one came inside our house except us and low-chemical friends. If a friend triggered us, we met outside somewhere. We wore charcoal masks if we couldn't avoid something. No library books. New books were opened and aired out for weeks. All Christmas gifts were opened and aired out for weeks. And of course this was all in our new low mold low chem house. We sat in the parking lot at church and listened through radio to the service.
- Neural Retraining. Honestly, this was the final key element. We had a clean diet, clean house, detoxed the mold neurotoxins, got rid of the Lymes, and it was STILL not enough. We used the Gupta program. Basically it helps address the damage caused by the mold neurotoxins, helping to reconnect pathways that were shattered. Key word here: neurotoxin. Definition - a poison that acts on the nervous system. Result - ouch. Funny - another blogger who helped me get through some rough periods mentioned that we may need that program. "Ha! What does mold toxicity have to do with the brain????" Well shut my mouth.
- Ongoing hope. We still have bad-ish days at times. When we are sick or there is a lot of pollen out there, we are more sensitive to chemicals. Weather fronts still cause some migraines. But all of that is ok. When I look at the overall picture, well, I get giddy. I'm probably the only person who walks in every store trying not to break out dancing, just cause I can actually go in! I appreciate the heck out of my life.
So, there you have it. This is how we went from this:
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