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Advice for an “Impossible” Mold-Illness Situation

by Catherine

Identifying and Focusing on the “Big Rocks” Will Help to Make Mold Illness Recovery Less Overwhelming and Hopeless

As this blog grows one year older and I connect more and more with readers reaching out to me for advice about mold or other environmental toxins that are negatively affecting their lives and their health, I realize just how prevalent this form of illness truly is. It makes me wonder how many other people are out there needlessly suffering from undiagnosed, environmentally-triggered sickness. I am happy to have this platform to spread awareness and real information about mold, so that more people can have the tools to identify the cause of their symptoms and know the right questions to ask their doctors to help get their lives and their health back on track. But, I know that I cannot reach everyone. I guess that is why when someone writes to me for advice, I feel like it is my duty to offer them the best words of encouragement and the best information about possible solutions to help address their unique situation. Even though, I don’t have the professional licenses and certifications to be able to offer professional consultations and/or medical solutions, I can share my experiences and knowledge gained from fighting my own mold battle. So, while my advice is not always perfect and does not always contain one absolute answer or resolution, I am putting everything I have into my responses and am always giving the advice that I would’ve wanted someone to give to me—words rooted in honesty with valid, applicable action steps.

Today, I am going to share a recent reader’s email that includes almost all aspects of the mold/environmental illness theme:

  • Gradually failing health;
  • Multiple medical diagnoses without a real treatment plan or improvement in symptoms;
  • Physical displacement from the family home;
  • Loss of belongings and relationships;
  • Anxiety, confusion, and hopelessness.

I am sure at least one part of this reader’s story will resonate with anyone who has dealt with or is dealing with chronic or environmental illness. It may even be difficult for some of you to read, because it may hit very close to home. The reason I want to share it, though, and to share my response as well is because, I think that sometimes the realness and the complexity of this illness is forgotten. There are so many balls to juggle; that it can become overwhelming. When mold becomes problematic to your health, hurdles can be many and may include

  • Figuring out where the mold exposure is occurring—at home, at work, etc.;
  • Finding a safe, mold-free place to live or place to go temporarily;
  • Figuring out if you should and how to properly clean belongings and/or current living space;
  • Avoiding further mold exposures;
  • Finding a mold-literate doctor;
  • Adhering to a detox treatment plan to remove the mold from your body;
  • Navigating the lack of empathy or understanding from others and/or family members who are not sick and do not understand;
  • Figuring out how to pay for it all when much of the medical costs are not covered by insurance and, many times, sickness makes work impossible.

In other words, knowing how and where to begin is daunting, to say the least. But, beginning the healing process, no matter what the circumstance, is NOT impossible and is what I always want to impart.

Over time, I have learned that the best way to help others going through this is to try to immediately narrow-the-scope and begin identifying the biggest “rocks” in each person’s situation. (I define “rocks” as significant hurdles that have to be picked up and moved out of the way, so that a person can recover their health.) If you look at even the most impossible situation this way, you can then start to prioritize the “biggest rocks” that are blocking the way. As soon as the scope narrows to a few “rocks,” things can feel much less overwhelming. It’s just that when someone is in the middle of it all, it is very difficult to see the forest for the trees, as they say.

This particular reader has a story with lots and lots of current obstacles. I am sharing it in the hope that our exchange will help others who are also struggling to get a different perspective on their situation, so that it feels less overwhelming and, instead, filled with encouragement and options, rather than dead ends and barriers to wellness and recovery.

Here is an abbreviated version of this reader’s email to me:

(Note: I have removed all names, locations, and personal references to protect her privacy.)

Hello, just read your article about saving items.

Here is a little bit about me.

I have been exposed to mold several times throughout my life. I knew nothing and thought nothing about mold until I started living in an apartment that was a recipe for disaster, though I didn’t know it at the time. It had old carpet, baseboard heat, no fan was ever in the bathroom, no central air, no cold air return, the old air units were kept in a small area in a 1/3 of the basement, it had a crawl space as well which had air flowing straight from that into my apartment. I started getting some weird symptoms while living there in less than a year. I started to see mold around wooden window frames from condensation in the winter, and I found it on the walls in my bedroom in a few spots and of course in the bathroom. It was never taken care of professionally. I also had other health issues before this but nothing debilitating.

Anyway, fast forward 8 years. My main health issue got worse. I ended up having to move out of there. I moved in with my fiancé for what I thought was going to be a brief time, as I was too bad off to take care of myself anymore.

Well, all hell broke loose when I started staying at his house. I have been forever traumatized by it. I won’t go into the details, but I was diagnosed with one thing after another. I felt like I was literally dying a slow death there. I lost 30-40 lbs. in 3-4 months. I looked like a skeleton. So many scary symptoms.

Someone mentioned getting tested for mycotoxins and mold through RealTime Labs, even though there was no visible mold in the house. It was actually a pretty nice house.

Anyway, I came back positive, and the house was off the charts. We had to get me out of there immediately.

I started to do my own research. I had 95% of the symptoms, but those symptoms also went along with some of my other diagnoses. I joined a bunch of mold groups on Facebook and learned as much as I could.

I needed a place to live, so I tested my Dad’s house with only a mycotoxin RealTime Lab test, which came back ok somehow.

His house is bad, though.

Mold was found there recently as my brother was moving stuff around in the basement in a corner on a painted concrete wall. The boxes/games around it were moist and moldy too. There is an old leak near the washer/dryer that was never fixed. My Dad said the mold down there actually used to be a lot worse!

At this point, I’m very malnourished and my immune system is weak. I have never detoxed or found a good doctor since my known mycotoxin exposure last winter.

My now husband sold his house but we can’t seem to find a new one. We have been separated for 9 months. He can only come up and see me a few times a month. He was my caregiver. I feel like I’m slowly fading away and have no hope. I lost my job and insurance once we found out about the mycotoxins in my husband’s house. I had to have health insurance with all my issues.

My husband has been looking for a house for us for months. We are limited to where we can go, because he cannot leave family and his current job where he lives, which is not a good area to be in with lots of flooding and bad terrain. Anyway, I feel stuck and scared and hopeless.

We are trying to find a house without wallpaper, preferably no carpet, an unfinished basement, level ground, if possible, no flood zone and a ranch, so it’s easier for me to get around. We’ve been looking for at least 3 months now and can’t find anything in our price range that fits all this. In the meantime, I pray, I use Ec3 candles and the laundry detergent.

I left the majority of my belongings before moving in with my Dad and started new here. I don’t trust my Dad’s house now, so I will probably have to leave everything behind.

I’m staying in a back room at my Dad’s. I have an air purifier running in my room. The furniture is old and broken that I sleep or sit on, but I have no choice. I vacuum 2-3 times a week back here, so much dust every time is visible in the vacuum. It’s not a HEPA. It’s cheap. I’ve tried to remain getting things cheap for now until we can get into a safer house as we don’t have a lot of money and can’t keep replacing stuff.

My brain is a mess cognitively. So many things have gotten worse health-wise over the last year, but I don’t know who to see because I’m a very complex case. I also have severe TMJ which doesn’t allow me to eat but 3-5 soft foods, and I have to be on low histamine which makes it really hard.  I eat as healthy as I can despite barely being able to eat. I’ve educated myself the best I can, but it’s hard to move forward with all my issues and doctors not knowing what to do with me. I’ve been diagnosed with other things as well.

I guess my question is, do you have any advice for me, and is there anything I can do when trying to find a new house to see if it’s toxic with mold or mycotoxins before we would buy if one comes up? I don’t want to buy unless we can somehow test it first. I don’t know the best, fastest most accurate way to do that.

Anyway, I felt led to reach out after reading your blog. Sorry this is so long, thanks for your time.

Here is my reply:

I can’t begin to tell you how my heart aches for you reading your story. I know it seems hopeless, but there are some bright spots here. The two I really want to hone in on are 1) the fact that your husband is on-board with finding a safe place for you to live, and 2) the fact that you KNOW what you are being made sick by–mold. That is huge, because you know what to look out for and to avoid. I also want to assure you, and this was confirmed even more for me by talking with Dr. Nathan for the blog, that once the mold part of your illness is cleared up, many of your other symptoms will subside too. (Mold, once it colonizes in the body, can be very insidious and can ignite multi-system malfunction, and total-body inflammation. Thus, it makes total sense that in order to get well, you have to remove the main source of your inflammation, which equals the mold.) Getting into a truly safe, mold-free space will be 90% of your solution—although, I know it is the hardest part.

My advice to you right now (let’s focus on the now) is to consider getting into a temporary housing situation with your husband as soon as possible. Can you do that? Maybe put purchasing a new home on the back burner for the time being? It is a LOT of pressure and added stress for you right now to be trying to find a home to purchase that both fits your price point and is safe mold-wise. The reality is that most, if not all homes, other than something you would build yourselves, will need some form of modifications, adjustments, or cleaning to be safe enough for you at this point since your body is so reactive and sensitized. I think that getting out of your current living situation as quickly as possible is paramount for your sanity and for your health. Don’t spin your wheels worrying about testing your Dad’s home anymore—just focus all efforts into finding somewhere safe to live.

 To do that, my advice is to look for a newer apartment or rental situation in the area where you need to be. I know an apartment is not ideal or where you ultimately want to live, but it will give you your own space with your husband where you will not need much furniture, you will have a smaller space, so that you can manage the cleaning and mold maintenance in your current health, and you can start to recover. As you regain mental clarity, cognition, and strength, you can make better decisions about your future home. It will also give you more time to find, evaluate, and test homes, so that you can find one to purchase that has zero surprises and that is safe. Renting may also enable you to find a doctor in that area who can help you to properly detox and to treat the mold in your body. It also enables you to walk away and to leave if you can’t make that situation work—walking away from a home that you purchased is much more difficult.

Things to look for in a rental:

 I would focus on newer construction—not necessarily brand new. New does NOT mean mold-free, but it does mean that there has been less time for leaks to occur and for the air quality to suffer. I would find a space with zero carpet. Look for tile or hardwood floors. Most apartments are constructed on slabs, so basements and crawlspaces aren’t typically an issue. Make sure bathrooms are properly ventilated.

 Many apartments also offer washer/dryers for an additional rental cost. This would enable you to wash your things separately from a common laundry. Consider purchasing dehumidifier(s) and keep them running to keep your interior humidity levels below 50%. Also consider an air purifier to further clean your interior air and to keep allergens to a minimum. Be cautious in moving your current air purifier with you as it could cause cross contamination.

 As far as testing a new place prior to moving in is concerned, I would purchase some EC3 Test Plates. Have your husband TAP test spaces in the apartments that he tours. Just open a plate and gently tap the open side with the agar medium against the floors, counters, or other flat surfaces. Close each back up and seal immediately. Then, label the plates and follow the directions when you leave to allow them to incubate. Three days should be plenty to see what kind of mold situation you are dealing with. If your results show low indicators of mold, then you can feel good about moving in. Mold maintenance, which I will detail in a minute will still be very important, though.

 What to take with you:

 I know you said that you don’t have much at this point in the way of belongings. Look at this as a blessing, because it enables you to feel free to not bring much with you. Any clothing you bring should be washed with EC3 Laundry Additive outside of your Dad’s home, before you bring it into your new space. I would not bring any furniture from your Dad’s home. Just purchase what you need for the apartment and acquire things as you can. I would encourage your husband to do the same for the sake of your health. With Target, IKEA, Walmart, etc., you can get basics very cheap. This is what we did after our remediation was complete. We honestly had a card table and folding chairs in our kitchen eating area for a year before we got a proper dining set

 How to start to recover your health once out of the mold:

 Focus on moving the “big rocks” first, as those “big rocks” will have the most noticeable positive impact on your health.

  1. Start to stabilize your immune system and to address the mold in your body (and going into your body):
  • Rinse your nose 2-3 times daily using a saline rinse system with an added antifungal, like CitriDrops Dietary Supplement to eliminate mold from the nasal point of entry into your body;
  • Begin a natural, oral antifungal to combat the mold in your gastrointestinal system—I suggest the CitriDrops Dietary Supplement for this as well, especially if you are already using it in the nasal wash, because it makes it very cost-effective.
  • Eliminate all tap water from your diet—the chlorine, etc. kills bacteria and enables the mold in your body to colonize and will make you stay stick;
  • Use Sinus Defense to aid your immune system in identifying foreign antigens—it is a game-changer, because it stimulates your cell-mediated immune system to get to work immediately address the mold in your body using your natural T cells.
  • Consider using supplements to quiet your immune system and inflammatory responses, so that your body can heal—this may sound counter-intuitive, but mold has a way of making any underlying issues, infections, bacteria, illnesses, etc. come out of the woodwork. There are some excellent homeopathic products, like D-Hist by Ortho Molecular Products, that help quiet the histamine response, while, at the same time, bringing in antioxidants and glutathione to help you heal and to naturally detox the mold toxins. 
  1. Begin mold maintenance and avoidance strategies in your new home to keep you safe:
  • 2-3 times weekly HEPA vacuuming all floors, surfaces, and furnishings. I strongly suggest purchasing a HEPA-certified vacuum. Otherwise, that dust and mold that are vacuumed are being recirculated into the air as soon as you vacuum them up. There are low-cost options that can be purchased on Amazon for under $100.
  • Use dehumidifiers to keep indoor humidity below 50%.
  • Use EC3 Spray and EC3 Laundry Additive to treat hard and soft surfaces and laundry for mold.
  • Remove shoes prior to entering your home.

(Note: I have an in-depth mold avoidance post HERE.)

  1. Find a mold-literate medical doctor in your area to help you to begin detox and binding the mold toxins, so that they can leave your body safely and gradually. You can read my post about finding a mold doctor HERE. You can also use the ISEAI website to locate one. This is because you may also need pharmaceutical antifungals and other medications to fully accomplish removing the mold. A doctor can help you do that and will see to it that you are safe and comfortable while this is happening. A doctor can also go over all of your previous testing (kudos to you for getting all of that done and for keeping it all with you) to see which molds you are dealing with, so that the appropriate binders are chosen for you.

 The good news is that once all of these “big rocks” are moved out of your way, you are going to start feeling better, recovering your energy, and maybe even having some pain relief—pain is often connected to inflammation caused by mold. My advice from my experience is always to tackle what is front of you and what you can manage. Don’t give up. Even small steps of progress are steps towards recovery. This illness is very treatable and you can recover. Please, do not hesitate to respond with further questions.

 Sincerely,

Catherine

Is there an approach that you used to conquer or to address your situation? Something you did that made all of the hurdles feel more manageable? Feel free to share in the comments below.

 

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4 comments

Angelica monroe - 10:46 am

Can I please connect with the person who wrote to you? We have a very similar story and I am so lost and depressed right now. I’ve lost everything, boyfriend, job, health, belongings, and had cross contamination two times. Because of a contractor and a bad landlord. I am so lost and would love any support. The spore colonies show up in certain environments and my dog is sick now. 1.5 million per cubic meter just in my bedroom. Coughing up blood, weight loss 99 to 91lbs, lesions on my body, black fibers in my cough, choking on my mucus, insomnia, brain is completely gone, and nobody believes my story.

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Catherine - 4:53 pm

Hi, Angelica,
I cannot give out anyone’s personal emails, and with this particular story, I gave her my word that I wouldn’t use her name and any personally identifying info to keep her anonymous. There are many mold support groups, though, that can be found on FB and IG. I have a group that you can ask to join through my fb too. You can post there and ask for feedback and advice. I moderate to keep topics related to environmental illness, but members may reach out to each for support and to take conversations “off-line” if need be,

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Jen Bantel - 3:06 am

I would be worried new construction as well. I have had problems with mold living in new construction. While it was the “pink” mold that usually shows up around new construction, I was so sensitive that it still made me sick. Also I have problems with the offgassing and chemical sensitivity associated with the way new newly constructed apartments are these days so I was in a constant state of pain that I didn’t even realize until I moved into a different apartment and it decreased. Unfortunately this apartment has “old” mold in it somewhere which is making me sick again but in a different way than the mold when I was living in the new construction. I live in a humid, moldy, hilly valley which it sounds like this person does as well, which makes it almost impossible to find a place that is dry and landlords aren’t interested in keeping up their buildings. I’ve been looking for a safe apartment for 6 months with no luck, even doing expensive ERMI pre-testing with amenable potential landlords. Just beware of anything built in the last five years. The materials they are using and budget-cutting measures in the building industry makes it really hard to find one that doesn’t have new-growth mold. As a background, I originally got sick after living in and rehabbing a 1926 sears catalog house. Then I moved back with my parents and their 1950s house has multiple locations of mold, then I bought a 2004 condo that had preexisting mold found when a toilet flooded the entire unit and they looked behind the kitchen cabinets.

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Catherine - 12:01 am

Thank you for your comment. Any input is helpful and valuable, because everyone has their own experience. Like I said in the post, I try to give my best advice for the person and the situation. It is not perfect, because there is no such thing as a “magic bullet” as far as mold is concerned. I will say that I also live in a difficult climate for mold–humid and very hot in the summer. It also rains A LOT. I have found that newer construction with rental situations works better for a short-term solution, because there are less variables and less previous offenses to the property (aka leaks, water intrusion, mold that was covered up from a previous tenant). VOCs are always a concern, but if you have a decent air purifier, like an IQ Air running, you can lessen the insult significantly. If you rent from a reputable company over an individual, you tend to have better luck with up-keep of the property and addressing problems as well. I gave advice about controlling her indoor climate with dehumidifiers, HEPA vacuuming, using the EC3 products, and air purifiers. I have had very positive results, even in rental situations that were far from ideal, when I actively addressed mold in my cleaning, clothes washing, and by using the EC3 Candles on the front-end frequently. Depending on individual sensitivities and what other things someone is dealing with healthwise, it may take more than one move before a home is found that feels good and that promotes healing. That is also why I suggest renting, because it does not lock you in and marry you to a property that just doesn’t work for your body. My home is still not perfect. We’ve finally gotten it to a place that I feel good there, though. I contribute this to both my ongoing cleaning and to my ongoing detox and body treatment plans. Doing these things have allowed me to continue to get better, even when I can’t completely escape mold in my environment.

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