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How to identify, reduce, and rewire reaction to mold

Mold is a very common trigger for Chronic Fatigue Syndrome (ME/CFS) and other neurological conditions, often in combination with other stressors. However, most medical professionals are not informed about how to test for it and how it can impact our health. 

Mold is also a part of life. It’s present in our air and in half of homes. Some people react more strongly to it than others, and can do so in different ways.

In this post I will share:

1. How to identify if you have elevated mold in your home or in your body
2. How to reduce mold in your home and in your body
3. How to rewire your reaction to mold (so you can live in society like a normal person)

I will share my own experience with mold, filled with lessons learned the hard way on my journey back to health.

Having a balanced perspective on mold:

There was a time I was in complete denial about mold (in large part because I was dismissed by early doctors when I asked about it) and moving felt too hard, since I had limited mental and physical stamina.

Then there was a time when (after moving) my brain remained stuck in a stress-response to mold, whereby tiny exposures triggered major health setbacks. This blog post is a nuanced and balanced post about mold.

Note: I am not a medical professional. Nothing I share is meant to be prescriptive and is for informative purposes only.

This post is still a work in progress:

Short answer:

Older homes with a past history of untreated leaks, current leaks, damaged roofs, worn window seals, in damp environments, with little sunlight are more likely to have elevated levels of mold.

Well-maintained homes that get plenty of sunlight and ventilation are less likely to have mold.
 

How I learned the hard way about mold:

My extreme reaction to mold drove my health symptoms, but it took me well over 2 years to figure it all out. 

Of course, I googled about mold (among a hundred other things that could have caused my health to fall apart), but all the images showed scary infestations of “black mold” clearly visible on walls. 

I incorrectly assumed our 110-year-old Oakland rental house didn’t have mold, because I couldn’t see green and black mold, except for some splotches on our window sills (which may have also been dirt).

It turns out that there are also invisible types of mold that grow on house dust that can affect your health. This was a type of mold found in high levels throughout my house. 

Furthermore, mold of all types can be hidden in places like leaky pipes under the floor, sink, or behind the walls. It can also be hiding in the attic, where many heating and A/C units are located.

Instead of just using your eyes (don’t see anything obvious – we’re fine!) or your fears (there could be secret mold everywhere!), think like a scientist.

What conditions help mold thrive? The answer is humidity, moisture, lack of ventilation, and little sunlight.

Ask yourself these questions:

1. Did your health begin to decline after moving where you currently live?

2. Do you live in a very old home?

3. Do you live in a very humid environment?

4. Do your symptoms get significantly worse when it is rainy or more humid?

5. If renting: Does your landlord make lots of excuses if there is ever a repair needed? (If so, it’s likely they’ve done this before with past issues and leaks.) And is the person who they hire to fix things a licensed practitioner or a friend of the landlord (or the landlord themself)?

6. If own your home: Did the previous owners leave the house in bad condition?

7. Does the paint in your ceiling appear sunken in and chipped? (This is a sign of water damage.)

8. Does part of the paint in your ceiling look different? (This could be a sign of a past water leak that a landlord or previous owner painted over.) 

9. Very important: Does your home not get very much natural sunlight? (Sunlight de-activates mold spores.) More specific questions:

– Are you living in a North-facing home if located in Northern Hemisphere or South-facing home if located in Southern Hemisphere? (These get far less sunlight.)

– Are you living in row-house with no lighting coming in from the sides of your house?

– Are your blinds and curtains often closed? 

– Are buildings, trees, or other homes blocking sunlight into your house?

10. Is your HVAC unit in a dusty old leaky attic vs. a clean and dry place?

If you answered yes to a few of these questions (I was a ‘yes’ for ALL of them), there is a greater likelihood your house could have elevated levels of mold.

Here are additional questions based on my personal experience (I can laugh-cry about this now):

11. Do you have your bedroom blinds always closed because your sleep is disrupted?

12. Does your downstairs neighbor has a plant jungle of plants that go up the side of the house that he waters frequently?

13. Does one of your bathrooms spontaneously run, but you gave up asking the landlord about it?

14. Has your leaky sink needed to be repaired constantly, and your landlord’s 85 year old unlicensed handy man come to fix it with random parts?

15. Did when the mouse trap man came, he mentioned there was a large hole in your roof?

16. Did you find out from previous tenants there were lots of issues with delayed repairs?

17. Is the rent mysteriously very low for your area / was your house a steal of a deal?

Note: It’s very common for mold to grow on window sills of most older homes and homes in rainy climates. If you have debilitating chronic illness like ME/CFS, the amount on window sills alone is not likely the main culprit for your health issues, though it can be helpful to take action to ensure your windows are properly sealed and maintained.

Before you take action, take a deep breath. Don’t panic or hastily start trying to clean things without precaution. I’ll share resources for testing and safely remediating your home below. (Nothing I share is professional advice.) 

1.  If you decide to clean it yourself, use protective gear.

Experts recommend wearing, at minimum, a N95 mask and long rubber gloves when cleaning mold.

Furthermore, you can wear either a disposable protective coverall (note: these can get sweaty) or clothing that can go in the wash with bleach, bleach alternative, or Borax, and be dried on high heat.

If you have chemical sensitivities, you may not want use bleach when washing your clothes, or you can just use a small amount, then rewash the clothing item without bleach to throughly rinse it out.

If you can afford it, consider hiring a professional (and ensure they have all the proper protective gear for their safety). 

If you are just vacuuming, brooming, or Swiffering your house, you’ll want to wear a mask for this, too. When emptying the vacuum into the trash, do so outside if possible.

2.  Avoid fragrant or highly neurotoxic cleaning chemicals when cleaning mold.

Similarly, if you hire professionals, go over what products they’ll use before hand or provide your own.

It is not uncommon for people to see chemical sensitivities develop or be exacerbated after cleaning mold.

When mold is cleaned, it can release activated spores into the air. When your limbic system is under stress from mold and chronic illness, and you add harsh chemicals to the mix, your limbic system (the part of the brain that subconsciously assesses danger) can then associate the chemicals with the mold and further drive the cycle of dysfunction.

My experience: In our case, local attic cleaners once used a harsh smelling product called “Biocide” mold fogger to clean our HVAC unit. It exacerbating my health symptoms. We asked them to come back to wipe it off the unit (since we didn’t ask them use it), which helped some, but the scent remained for weeks. Nearly 2 years later, I’d learn that the brain’s limbic system will make connections to try to protect you, and my brain likely linked harsh scents to mold mycotoxins (a common occurrence). 

Do this instead: Go to EWG.org to find safer cleaning products. You also want to weigh actually getting the job done. With professionals, go over exactly what chemicals they’ll use ahead of time or do the research and provide your own. 

3. If you hire professionals to clean or remediate it, stay somewhere else.

When you return to your house to sign off on the professionals’ work, open the windows and turn on the fans. Then consider spending the night and next day somewhere else.

You want to air it out, since there may be cleaning fumes and spores still in the air.

4. Understand that cleaning visible mold (or mold fogging) is likely not a complete solution.

Explanation: Cleaning visible mold or using a mold-killing fogger spray can reduce mold, however, in many cases it may not get to the root of the problem.

I have heard of someone who hired professional to fog bomb her house, and her health symptoms got worse. This approach might kill some exposed mold on walls and ceilings, but the downsides are that it may temporarily activate mycotoxins and may likely not solve the problem long term if there are ongoing issues.

Do this instead: Consider investigating and resolving the source of the mold (lack of ventilation, cracks in the roof or ceiling, leaky pipes). This might not be in your domain. You may want to look into professional remediation to fix and remediate the source of the mold. Typically, there is a mold inspector who comes first (a separate contractor), and then a remediation crew. I explain more in the section below titled “Home testing options.”

It is going to be okay, even if it doesn’t feel like it now.

If you DID try to clean the mold yourself, and DIDN’T use protective gear, and used fragrant harsh chemicals and are reacting to it very strongly, I’ve been there! It’s okay. You might feel really bad right now, but this is only a hiccup.

All isn’t lost if you have a symptomatic flare-up or crash. It’s possible to heal from mold-triggered illness NO MATTER HOW TERRIBLE the setbacks. I’m a testament to this, and I know others, too. 

How professional mold inspections work:

Professional mold inspectors have a special device that collects samples of the air in your home. Most also swipe various surfaces (sometimes with a cloth or an adhesive). 

They send the samples to a partner lab for analysis to identify the presence and level of common mold species, and you’ll get results typically in 3-14 days. 

Mold inspectors also typically have a humidity detector and note the humidity levels in different parts of your home in their report, since a humidity level of over 55% creates an environment for mold to grow.

If you’re renting, the inspection and remediation companies typically require landlord authorization. Because our landlord refused to allow it (we didn’t know our rights, which were unclear), we actually got an inspection without her knowing and told the inspection company that we were the owners.

The limitation of home mold testing is that the professionals merely collect a few samples of air (usually one in each room or hallway) and it might not be reflective of things in their worst state. It’s literally the way the wind blows.

For the air sample tests – if you have been running a portable air filter in the past 24 hours, or had opened the window for a while before the mold inspector came, that can reduce results. You’ll want to turn things off, just for the test to get a clear reading. 

For the surfaces – are they really going everywhere? For you to be sure and test all the corners of the house – the price tag starts to go up and up (since each sample costs money to be tested at a lab).

In Oakland, California, every mold inspector (the people who collect the samples) was partnered with a remediation contractor (the people who take out and replace affected drywall, sink cabinets, roof patching, etc.). Some remeditators are better at finding the mold than the inspectors. 

Friendly tip: Do NOT just take screenshots of suspicious areas and email a professional you find online “is this black mold?” I did this in early 2017, and the guy told me, “That doesn’t look like black mold,” so I didn’t think I needed to test anywhere. I can’t blame myself because I was not aware of the other unhealthy types of mold or what to actually look for.

Cost estimate of home mold inspections:

Professional home mold inspections are not cheap. They can range from $300-$1800 depending on your location, the size of your home, and how many check points / samples tested. 

There are also DIY home mold tests:

There are also tests you can do yourself. A company will send you the swabs (typically small cloth squares or adhesives) and you chose what you want to test, then you mail it to their lab. Under your bed, the bathroom floor board, under the sink, behind the dresser (be very careful when moving furniture), and the window sill are common spots. You put each in a labeled plastic bag noting the location. You’ll pay for the cost of the labs and the supplies, but this removes the cost of labor.

Furthermore, there are home air tests, which look similar to Covid rapid tests, which you can purchase on Amazon – however these aren’t fully accurate and can give you false negatives according to reviews I read.

Weighing the decision to test your house:

If your partner doesn’t have symptoms, they might not be convinced it’s necessary to get a home mold inspection. Or they are balking at the price tag.

That’s why I think getting your blood and urine tested is a surefire way, and would personally recommend doing FIRST if you suspect you have mold. 

This shows you what you’re ACTUALLY dealing with in your body.

These tests that can help identify your level of mold exposure and inflammatory response. 

This is not medical advice. Please consult a qualified medical professional.

C4a inflammation test. The C4A marker is part of the immune system that is activated in the presence of bacteria and fungi and other pathogens. When C4A is high, it apparently means your immune system is in overdrive trying to clear pathogens and toxins.

My C4a was very high.

TGF-β1 (Transforming Growth Factor Beta) is involved in maintenance of tissue homeostasis. It is commonly moderately to extremely high in people with an inflammatory response to mold who live in water-damaged homes. High TGFB1 is associated with hair-loss, kidney issues, muscle repair impairment, and both immune suppression and autoimmunity. (Yep, some things are in overdrive and some things are suppressed.) 

My TGFB1 was very high but not extreme.

I read that garlic and zinc can lower it. I was eating a ton of garlic and taking zinc through a multivitamin, but it could not make up for my level of exposure. (Note: I read that taking too much zinc on its own is not advisable, as it can lead to copper and other mineral insufficiency.) 

My doctor did say my “healthy diet” was probably why I wasn’t as bad as her other patients, despite my mycotoxin levels. See below. 

Great Plains Lab Mycotoxin (“MycoTOX”) Panel. The Great Plains Lab Mycotoxin panel is a urine test that detects the most common species of mold that produce potentially harmful mold mycotoxins. 

Mycotoxins are types of metabolites of mold, which is a type of fungus. (Note: Not all species of mold produce mycotoxins.) Mycotoxins become increasingly active in wet, damp, and humid conditions. 

Like viruses and bacteria, there are probably many unclassified types of mold fungi, but this test covers the common culprits.

My result was 107, or 20 times the danger zone for one species called Aspergillus.

Unlike vitamin tests and cholesterol tests which you can now purchase yourself without a medical signature, the US and Europe require a licensed health professional’s authorization for the above specialized tests.

Did I keep testing and monitoring my levels? No.

I actually never tested for mold again until a while after I healed out of curiosity (it went way down to safe levels). Since my level was so crazy high, I just trusted that it would eventually go down after moving out of our old home and into a sunny 3-year-old apartment and hitting the sauna (see “How to reduce mold in your body”).

What type of doctor tests for mold?

There are functional medical doctors, naturopaths, and D.O.s who specialize in uncovering healing blockers in people with chronic illnesses, including mold, however they are often out-of-pocket and pricey. 

Note: Allergists typically only test for an allergic response to mold and aren’t trained to test for an inflammatory one, like I had. They are two completely different things. I did not have any allergic response, but I had a severe inflammatory response.

Dr. Neil Nathan (who has retired from active practice, so can’t order the tests himself, but consults for information purposes) has a list of medical practitioners he recommends here. I’d also add practitioners from Gordon Medical Associates in Santa Rose, CA (Dr. Gordon himself is not taking on new patients, but has a team of other MDs and NDs) and the Holtorf Medical group, like Dr. Karen Bullington in Marietta, GA are very experienced in testing for mold and other triggers.

If you can’t afford a specialist, it is helpful important to find a professional who is investigative and kind. I believe even registered dieticians have licenses where they can order the above tests. 

My advice (learned the hard way). Let go of doctors who don’t seem interested in helping you. Try not to take it personal. Med school didn’t teach them about mold, and they might be exhausted or have detached to get through their case load.

I say this now after lots of extreme frustration, anger, and tears from my experience with the standard medical system. I want you to know I understand and also encourage you to focus on solutions.

Common culprits where mold can be found in higher quanties: Conventional coffee, wine, chocolate, and nuts.

If you’re looking for mold-free and lower-caffeine organic coffee, I came across a brand called Fabula (their dark roast is the lowest caffeine).

These types of nuts are more likely to have mold byproducts: Peanuts, pine nuts, cashews, and walnuts. Almonds can have some, but usually less than these others.

I actually avoided all these foods (and all alcohol and caffeine) during my journey with CFS even before I tested for mold, because I was eating a severely restricted diet. Specifically, I was eating this high-lysine no-nut/bean Paleo diet with low-glycemic vegetables. That diet provided me relief from symptoms but was not enjoyable, and looking back I think my lack of plant diversity and over-consumption of protein might not have been the best for me long term.

Healing often involves reducing or removing stress, then building resilience. 

Looking back, I can see how reducing them (vs the full avoidance approach I took) might have been easier for me long term. I had to do extra brain retraining work for my diet that had become so limited because I had such fears around food (from initial bad experiences and what I read online.)

Good news: Today, I currently enjoy all of these foods listed above in moderation (well, I don’t eat peanuts because I prefer cashews), and I’m fine. 

Now that I’m out of the stress and have built autonomic nervous system resilience, my body can easily handle common amounts of exposures.

Sweat is the most straightforward way for your body to naturally expel mycotoxins from mold.

Here’s what I did:

  • I used a powerful biotoxin binding agent called cholestyramine, which requires a prescription. My ME/CFS specialist prescribed it. She said me that I could get the cholestyramine resin in pure form (no additives), from a compounding pharmacy called Woodside Pharmacy for a little extra money. I asked her to put in the order there. I think I took it for about 3 weeks, but didn’t finish the entire amount. It was very chalky, and I was concerned that it was synthetic and could potentially bind to the good nutrients I needed.
  • If you prefer not to use pharmaceuticals, Bulletproof activated charcoal or bentonite clay are also supposedly good. 
  • Doctors say it’s very important when you’re using binders to keep things moving. Alive! Vitamin C fruit powder (can order on Amazon) and Magnesium (I used brand called “Pure”) are helpful in this regard. There is also Biocleanse from Plexus which combines Magnesium and Vitamin C and its cofactors.
  • Sauna. I started at 5 minutes and gradually went up to 40 minutes with a two minute break at a temperature that felt good to me. The temperature I set it to had me typically break a sweat 15-20 minutes in. It’s very important to stay hydrated by having water with electrolytes. 
  • Drink purified water. I recommend ZeroWater filters. They filter out more heavy metals than Brita. If you’re in a bad water district, the more expensive but higher quality professional grade AquaTru. My cousin in San Diego uses this. In the East Bay where I live, our water is much better so ZeroWater works fine. ZeroWater has a portable sensor to test the particles in the water, so you know when to replace the filter. AquaTru’s can connect to wifi so you can monitor when to change it from an app. Their filters last 6 months. I personally heat my water to a warm (not hot) temperature which helps for absorption.

FAQ:

1. Someone recently asked me “how did I know the binders weren’t working?.”  I actually didn’t know, and I didn’t think about this much.

If I remember, I believe I stopped with the binders because at the time I ran “slow” and was afraid the binders could slow me down and bind to other nutrients, which I needed for my energy, so I didn’t stick with these. That said, I know they’re typically part of the standard of care in functional medicine clinics. 

Perhaps some people may find binders beneficial. I just personally felt so good after the sauna, so I stuck with what felt good to me after.  

2. Where to find a sauna?

I went to my local tanning salon which had a Sunlighten infrared sauna, for a very affordable monthly rate. This was before the pandemic. 

Single person saunas cost $3000-$7000 and require at least two very strong handy people to put together. It’s not uncommon for instruction manuals to be inaccurate, so you’ll need people who can figure stuff out. 

This section is not complete and not stylized. Expected to finish everything by early June.

Many homeowners chose to remediate. Are you or the landlord able to remediate the situation fully? Note this can cost $1000-$10,000 depending on scope.  

Will the house keep needing continuous remediations because of the combination of the humidity, age of the house, and lack of sunlight? 

If renting: Can you get out of your lease? Or find a lawyer friend to help you?

Moving can take a lot of time. Plan for 3 times longer than you think to move and 3 times longer to unpack.

For me, I realized I wasn’t able to move into a “brand new” apartment because I had strong chemical sensitivities. The paint and new carpet was too much for my brain at the time. Fortunately, we were able to find a sunny 3-year old 2-bedroom that was a wonderful transitional place for us.

If moving is not an option right now (or while you’re waiting to move):

Are you unable to remediate and unable to get help with moving? If you can’t afford to remediate, have no one to help you move, can’t afford to pay anyone, and have no physical stamina to move, I am very sorry. 

Note — this list is for people who can’t move right now. It is also a list for people who are in the process of looking for a new place like I once was.

1. Get portable air filters (if you can’t afford them, post in a neighborhood forum asking for a donation to get them.) The GermGuardian is a high quality product that does the job and is more affordable than the others on its level.

2. Open all the windows to keep things ventilated.

Open the windows might not make sense, since mold comes from the outside. It’s kind of like a Petri dish. When it’s 100% fully sealed, it’s sterile. When spores enter and the Petri dish is closed and moist, stuff grows very fast. When it’s left in the open air, stuff grows a lot slower. 

If you have an old home your house, it isn’t 100% sealed from mold. Your best bet is keeping the windows open to let the spores float threw vs collecting and multiplying in a damp environment. Since you can’t keep things air tight from the outside elements, you want to keep things airy.

You want cross flow — so not just one window, the window on the other side of the house too.

This is what a health blogger named James did who fully recovered from severe CFS while in an old home.  He even still sleeps with the windows open and just wears warmer clothes in the winter.

3. Your third option is to focus on calming your limbic system. In my own personal case, my limbic response played a huge role in my inflammatory response and failure to recover from physical, environmental, and mental stress, which I’ll explain in a later section.

There are now several functional medical doctors who have come on record saying that brain retraining is an essential component of recovery for people recovering from an inflammatory response to mold, since it directly impacts the brain’s limbic system. 

Most people find reducing their mold exposure first to be helpful before the specific modality of brain retraining. 

Brain retraining is about a sense of safety and joy, and it’s my personal view that if you’re in a very scary situation (like a very toxic relationship or extreme bio hazard), your subconscious brain might feel like you’re trying to deceive it, which isn’t helpful for healing. Notice that before I wrote “reducing” – not avoiding. A full avoidance approach can be anxiety-inducing and harmful in the long term.

If you are in an high amount of mold and have an extreme response and are still living there, I recommend finding other modalities to calm the nervous system like meditation, somatics, and polyvagal practices. Experts say that a calm nervous system can help your body more easily clear toxins and return to homeostasis.

There are some coaches and programs I’ve shared that are great on my coaches page, though can be pricey. I recently across a lost cost program on finding safety in your nervous system from Deb Dana, a polyvagal healing expert with over 40 years of experience (only $79).

People who’ve come on my channel have mentioned her name before. 

I signed up myself out of curiosity, and the short videos and prompts seem good and easy to follow along so far. She has a calm voice. Just wanted to share that in case it’s useful: Finding Safety In Your Nervous System with Deb Dana.

What to take / not take with you when moving:

– Okay to take dishes.

– For me, I took clothes I could wash on high heat or dry-clean.

– We didn’t take any porous furniture.

– Probably don’t take musty clothes that have been stored in a high-mold place (like a bottom drawer or closet corner)

– I took shoes but I left them in a plastic bag, and kept them there until it was super sunny and I could lay them outside in the sun for a while. (They were literally in a bag for 2 years since we first moved into an apartment with no porch/yard.) My husband was a bit frustrated I had all this stuff in bags in his car. One of the bags actually got stolen. I really put off brain retraining mold, and looking back I would have done it earlier. 

– I didn’t take any books or cards or anything with paper (based on recommendations). I specifically regret throwing away my greeting cards. 

This and old photos apparently are awesome thing to take with you (in plastic bags of course ) if you end up doing brain retraining. (See “How to Rewire” section) Most brain retraining programs have an incremental aspect. Looking at cards from loved ones brings me joy. I assume people start by holding the card in the ziplock in their hand, doing the brain retraining round. Maybe the next level up is holding the card in your hand outside of the ziplock when you’re outside. And then eventually holding the card and sniffing it when you’re inside. I’m going to get more info on how people specifically did this. 

I had gotten rid of almost everything with mold, which actually backfired for me (when exposed by interactions with other people), since I had nothing to do incremental training with.

Coming soon.

My husband took it seriously after I got the lab tests, because we had concrete info.

Coming Soon. Subscribe to stay tuned when this post is complete.

I’ll share the best portable air filters, HVAC unit filters, and how to keep your home dry and healthy.

Best portable air filters:

1. The Germ Guardian. This is a workhorse that does the job. 

2. AirDoctor. This is more expensive. We have this one because we can afford it.  It has a sensor that changes color when there are particles in the air, like smoke. If it’s on the automatic setting, it will adjusts its fan speed for the increased presence of particles.

3. Molekule – Super expensive. I once had the old model, but it had a faint smell of burning metal (since it doesn’t just collect it zaps the stuff in the air). They have a new very expensive model, not sure if it’s better. It seems to be great (according to the marketing), but I haven’t tried it.

Airscrubbers and air filters for insider your HVAC unit:

Need to look up the one we have now, and others that were recommended to us.

Still working on this section.

I’d eventually realize my body’s reaction to mold was worse than the mold itself.  

Brain retraining is often a part of recovery from this trigger:

There are now multiple functional medical doctors who have come on record saying that brain retraining is an essential part of healing for people recovering from an inflammatory response to mold (see Dr. Neil Nathan’s recent interview on The Chronic Comeback) . 

This is because it directly impacts the brain’s limbic system. The good news is, is that science has demonstrated we can calm the limbic system and regenerate new neural pathways.

What I’ve observed: 

Most people find reducing their mold exposure first to be helpful before brain retraining. Brain retraining is about a sense of safety and joy, and it’s my personal view that if you’re in a very scary situation (like a very toxic relationship or extreme bio hazard), your subconscious brain might feel like you’re trying to deceive it, which isn’t helpful for healing.

Notice that before I wrote “reducing” – not avoiding. A full avoidance approach can be anxiety-inducing and harmful in the long term. This was the initial approach I took and it backfired. 

Examples of brain retraining for people who had mold as a trigger:

See Connie’s recovery story from CFS and a chronic inflammatory response triggered by mold, using a neuroplasticity program: Connie’s story. 

It’s what convinced me to try the brain retraining program DNRS which was part of my healing. Thank you Connie for sharing your story.

To write: What I observe is an effective approach to brain retraining around mold (how to do it), explaining what brain retraining is, what approach to take with any brain retraining. Pull from this https://healwithliz.com/read-this-before-considering-a-neuroplasticity-program/.

To write: Share all the links to people who have shared their mold recovery story including those who neuroplasticity and calming the nervous system was a key component and what methods they used. 

1. My experience with the medical system (scroll to section 2 if you prefer to focus on solutions):

In 2016, around week 10 of my post-viral “mystery illness”, I asked my local infectious disease doctor about mold saying I got really sick when it rained and wondered if it could be mold. 

The infectious disease doctor refused to test because I didn’t have “watery eyes.” To him, this was the most common symptom of mold.

I was referred to a psychologist, who realized I was very sick and encouraged me to continue to seek a diagnosis for my health issues. I then saw a local allergist, who ruled out allergies. He was so thoughtful and really seemed interested in solving my case.  He referred me to a new primary care doctor who took on tough cases, since my first was not helpful (understatement).

In March 2017, 10 months in, I had written in the Phoenix Rising ME/CFS forum that I had a bad crash and extreme reaction to chemicals after attic cleaners came and sprayed “Biocide” in our attic. A participant said that it was a sign of mold.  I didn’t understand the connection between chemical sensitivities and mold until much later (see “How to Rewire Your Reactivity to Mold” section). Nevertheless, I did some research to find the right tests and asked my doctors for these tests.

My second primary care doctor said he didn’t know about the mold tests (even though I copied the exact ones from a research article and linked to the research article) and referred me back to the allergist.

The allergist’s administrative assistant told me on the phone that I didn’t have mold because they tested me for all allergies, including mold allergies, and I didn’t have any.

But in truth, I knew I read somewhere that an allergic response and an inflammatory response to mold were different things. 

I could have demanded the complete tests. Or found someone else who was willing to order them. But if figured it all out in the beginning, I wouldn’t have been compelled to write this blog to help others.

I was so weak, had so much brain fog, and I felt I had “Cried Wolf” too many times before going down other avenues, so I just gave up for the next year plus.

Finally, 2.25 years in, I went to an out-of-pocket ME/CFS specialist, Dr. Karen Bullington in Marrieta, Georgia, which cost a few thousand for comprehensive tests and a diagnosis.

She found my C4A inflammation and TGF-Beta highly elevated.  Apparently this was a clue of mold.

I believe she said most of the time the C4a inflammation marker is high, it’s due to mold/fungus. And the rest of the time time, it’s because of a bacterial infection. 

She then ordered the Great Plains Lab MycoTOX urine panel (mycotoxins are the byproducts of mold) and my results came back that I had 107 times the “safe limit” of a mold called Aspergillus in my body. 

I remember telling her I didn’t need the mycotoxin test because my previous doctors insisted it wasn’t mold and were very confident. Glad her team insisted I take the test!

Looping back with the doctors who missed it: After getting answers and healing, I ended up visiting the allergist (I scheduled an appointment that I didn’t need), and brought with me the lab and home testing reports about the mold. He was so sympathetic and kind and actually took photocopies of my reports. He said he didn’t specialize in the inflammation and only focused on the allergies, but he’ll really consider this for the future. My second primary care doctor was more matter of fact. Over a short phone debrief, he said something like: “I guess these things happen, next time someone comes in with CFS, I’ll suggest they look into mold in their house. Maybe you could write a blog to educate people about it.” 

I didn’t reach out to the infectious disease doctor because he was quite arrogant. I feel like if I did, at best he’d say he was just following the “standard of care” and at worse he’d try to convince me none of this ever happened and I was wasting his time. I knew I didn’t need any of that.

2. How I ultimately healed: 

– 10 things that helped me heal

– Read this before considering a neuroplasticity program (the part “saw an ME/CFS specialist” includes specifics on things)

– My Story (you’ll want to scroll down to the last 6 sections)

3. How our medical system can improve:

I realize that my doctors who missed the mold aren’t bad or non-smart people, but that we have a flawed medical system.

The doctors were thinking based on average symptoms: “What is the most common symptom for [this diagnosis] for the average person?”

What we need is a system that teaches our doctors to use scientific, longitudinal thinking: “What’s different for this individual patient over time?”

Medical school teaches them the former. In reality, the average person does not exist.

The doctors were also were not looking at me as a whole body and only focused on specific system by specific system. Because that’s how our medical system divides them. And that’s how millions of people fall through the cracks.

We need more holistic and investigative training for doctors. It’s not a surprise that a majority (though not all) ME/CFS specialists are people who had it themselves or a loved one had/has it. 

I have a lot of respect for doctors. It’s one of the toughest professionals and is very mentally, physically, and emotionally challenging. 

We need more doctors and more support for doctors, since a majority of them are exasperated and run to the ground and simply don’t have time to investigate things at a deeper level. 

If you’d like practical and uplifting health recovery information, please sign up for our newsletter below. This blog is not medical advice nor meant to contradict what you have discovered yourself to be true. 

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