(This all was originally started and saved in an online journal used on our GoFundMe that we needed as we began digging through this situation and navigating remediation and medical treatment.)
It is astounding how expensive this journey becomes for one person's medical treatment and the remediation and fixing of their home- let alone an entire family.
We have been blessed with people who stand up to help. We need to help one another, especially when Mold Illness isn't recognized as a "real medical condition" and all of us are gaslit, ignored, or written off as "crazy".
We are suffering, our experiences are valid, this is real, and we can find our optimal health with the help of educated and supportive doctors.
I am not sharing anything online for 'likes' or 'follows' or 'retweets' or whatever else is cool on the internet.
I am sharing because Mold needs to be talked about.
We need to share our stories and offer light, a path for others, and hope. The conversations and stories we share allow us to connect and lift one another up. They allow us to conquer fear by recognizing we are not facing this alone. This sets us on the road to recovery.
Here are some of the original journal entries I shared when we first discovered we were facing mold, and when we started to reach out for help.
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AUGUST 2, 2020:
Hi everyone,
Thanks for taking time out of your day to read this, if nothing else it will update you as to what has been happening over here in the LiButti house; we love and miss you all and have been working tremendously hard to figure out this difficult road we have been on.
Since February 16th of this year (2020), I have been having systematic profoundly debilitating symptoms that we really incomprehensible to me, as I had never really been very ill before at all, and have had generally "good" health and endurance on my side- never needing to visit an ER (except one time when I fell on my wrist in high school doing high school teen antics).
I have also birthed our wonderful two children in very different but medically generally straightforward ways.
But from February of this year through beginning of April, I was ill back to back with:
Flu A
Sinuitis
Bronchitis
Flu B
(I have been tested for COVID 4 times to date, all negative)
Throughout those 4 illnesses, I also had distressing Gastro issues that lead me to beginning to do my own research, as I knew I was dealing with something profound that I didn't understand and I wasn't getting any real answers or relief from Western medicine.
(This is not what I advise anyone to do, but after 5 ER visits that shrugged me off and suggested that I instead examine my natural family's tendencies toward mental illness instead...-ie. lady you are just crazy-... I was beginning to get very frustrated and overwhelmed.)
Even my Primary doctor whom I had seen via tele-med several times, was clueless and threw me on CIPRO twice to just "try and clear out my system;"
(I know now that is a HUGE FUCKING Irresponsible NO-NO but I understand she was lost and trying to do anything for my desperation.) She called me in April 2020 and told me point blank she had no idea what was happening and basically wished me good luck and told me I had to be my own advocate.
I was bed ridden, needing Joe to walk me/carry me down our hallway to the bathroom and wait with me then get me back to bed. I didn't feel like I could adequately care for my children anymore (I was a SAHM at this time) and was becoming increasingly scared for myself and for them. I live for my family, I felt like a failure to not be able to care for them, play with them, teach them, and love them. Essentially do what every parent wants and needs to do for their kids. I felt shittier abandoning them especially because this all went down right as COVID began.
Through trying to figure this out- We have been so so grateful for the support of very close family to come and care for the kids on my worst symptomatic days so far, or while I have been shuffling in and out of appointments, testing days, or otherwise needed help.
My husband Joe has been amazing, and my absolute rock working over time hours and navigating caring for me and the kids while we figure this out.
I have been spending 2-3 hours nightly reading medical studies/journals/texts
while examining my symptoms and trying to figure out if anything was related or how I could try to look for patterns/links/correlations/anything or merely just better understanding of what was happening to my body.
I have seen my primary Dr. a few times over video as they wouldn't see in person me due to COVID, (went to two different Urgent Care centers 4 times, went to Buf Gen ER 7 times, conferenced w my GI twice, met a cardiologist and wore a heart monitor for two weeks, had an endoscopy and colonoscopy, and no one could offer anything besides shrugging me off, or finally becoming very concerned and having no idea.
After losing ~60 pounds and seeing myself continuously slip further into distressing symptoms and the ER staff finally became legitimately concerned about me but had no ideas to offer.
After a couple months of reading I began to understand the importance of gut health and how it relates to our immune system. I researched further about gut dysbiosis and looked for a knowledgeable doctor in my area who knew about those things.
In the beginning of May I met Dr. Patel at EHC Buffalo who was immediately welcoming and interested in my case, taking 2 hours at our first meeting to understand my complex situation- as well as taking an extensive history and becoming acquainted with it beforehand. She began treating me right away for Ulcerative Colitis, Candida Overgrowth, and Severe Gut Dysbiosis. I cannot recall if at this point she mentioned mycotoxins as I was very cognitively affected- I can't remember much of the first meeting.
I was also overwhelmed with even being taken seriously and given actual names of symptoms/issues I ACTUALLY HAD- she recalls that she did try to tell me and I didn't listen. Which is probably accurate as I was cognitively in another universe.
The treatments she initially gave me helped me gain back my ability to eat some food and enough energy to begin to take care of my kids at home again on the most basic level while Joe worked from home, and lessened some of my GI symptoms. But, other systemic symptoms began to explode in severity and occurrence.
The complete list of around 60+symptoms I have been dealing with from head to toe daily are as follows, I may have forgotten to list some:
Headaches in sinus area
Migraines in rear/base of head
Brain fog
Forgetfulness
Trouble recalling words
Difficulty concentrating
Losing my train of thought mid sentence
Feeling as though my personality has changed (generally very flat, or swinging to extreme anxiety and or having a panic attack)
Black eye floaters in left eye
Blurry vision
Sensitivity to lights
Sensitivity to screens
Cranial swelling (forehead, eye lids, inner ears, tongue)
Tongue Thrush 2+ months
Throat swelling
Throat sore/horse
Throat pain
Tingling and numbness in arms, arms, and legs
Difficulty taking a full breath
Lung/chest pain
Heart burn
Upset stomach/nausea
Stomach pain
Gastritis
Bloating
Belching
Feeling full after only a few bites
Feeling ravenous
Feeling thirsty often
Flank pain
Pain in mid back on either side of my spine
Abdominal cramping
Abdominal bloating
Sharp sudden abdominal pain
Bowel movements are always Type 6 or 7 (mostly or completely loose)
Bowel movements with mucus
Bowel movements many times a day
Very foul smelling bowel movements
Alternating Diarrhea with Constipation
Vaginal discharge white tissue or bacteria
Feeling tingling in arms and legs
Feeling numb in arms or legs
Arm, Chest, Neck and Facial rashes/flushing
Hair Loss
Hair growth on body
Pain in Lymph nodes (Neck areas and armpits worst)
Lack of appetite
Over reactive to smells (headache, nausea)
Under reactive sex drive (essentially gone)
Hyper reactive to loud/sudden noise (painful to me)
Chronic Fatigue (have been sleeping between 9-11 hours a night since Feb and it isn't enough)
Sweating profusely (overnight and often during the day)
Blood sugar instability (Have been testing blood sugar at home myself due to changing my diet and wanting to make sure I am doing it correctly and carefully, this has gotten better since managing my new diet better.)
Tachycardia spontaneous during day
Tachycardia occasionally when standing from squatting or sitting
Feeling malnourished
Extremely dry skin
Sensitive to temperature change
Histamine Intolerance
While there are so many symptoms, they are really maddening because of the nature of how they fluctuate for me in intensity and how often they happen. It makes figuring out a diagnosis extremely difficult, and I understand that. But I am stubborn and proactive by nature. It drives me crazy to feel like I do not understand my body for the first time ever (something I am naturally very deeply in tune with) and I am absolutely furious that I cannot fix what is happening myself.)
I also reached out to Buffalo Nutrition and Dietitians in order to make sure I am still eating the most nutritionally dense foods I can with my histamine restricted diet (I cannot handle histamine atm due to the nature of my issues). They have been helpful and very open to working with Dr. Patel, and it is so nice to feel supported by a team finally.
This past week, I re-met with Dr. Patel to go over my latest lab work which was much more in depth than any I'd done before. Essentially, my body is in crisis mode and every regulatory system I have is unbalanced. My IGG and IGE labs revealed MOLD. I also know now that I have a Genetic disposition I have I didn't know about, a Genetic HLA DR haplotype.
Genetic HLA DR haplotypes & Other Genes That Predispose To CIRS
People with chronic inflammatory response syndrome CIRS due to water-damaged buildings have HLA DR haplotypes that have been thought to make them susceptible to water-damaged buildings and mold.
{The following is taken from Dr. Shoemaker's website https://www.survivingmold.com/ }
"We do know there are genetic single nucleotide polymorphisms that make it hard to remove mycotoxins from the body. These usually involve the biotransformation/detox system. The biotransformation issues can be targeted and worked with through nutrition, environment, lifestyle, supplements, etc.
What is HLA???
HLA stands for Human Leukocyte Antigen (foreign body). It is the name given to the Major Histocompatibility Complex (MHC) in humans. The HLA complex is a series of genes on human chromosome 6 that codes for proteins that are unique to each individual. They are centrally involved in the actions of the immune system. HLA-DR's primary function is to present potentially foreign particles (antigens) to the immune system so the immune system can incapacitate and remove it from the body. HLA-DR is found on the cell surface of certain white blood cells that we call antigen presenting cells.
The primary function of HLA-DR (Human Leukocyte Antigen - antigen D related) is to present peptide antigens (foreign bodies usually), to the immune system. The white blood cells with HLA-DR binds the antigen to a DR molecule on the outside of the white blood cells body. These white blood cells are called antigen presenting cells (APCs). Antigen presenting cells with such names as macrophages, B-cells and dendritic cells present antigens to other parts of the immune system. Basically, the APCs grab the antigen, process it and take small parts of it and present it to other white blood cells via the DR molecule on its cell surface. It is as if to say, "Hey guys, I just found this possible invader, you need to do something about it." (Some people think of these cells as pacmen type cells that tell the immune system when there is something bad in the body.) When white blood cells called T cells see this antigen presented to them, they are able to react by protecting the body against this antigen if that is the appropriate reaction. This ramps up the immune system to remove the antigen with various methods. However, sometimes this does not work properly. Dr. Shoemaker's research lead him to believe that when a person has a particular type of HLA-DR haplotype, their APCs are not able to present the antigens properly. This means that the immune system does not end up removing the antigen. The immune system starts to react but does not follow through and creates an inflammatory state in the body.
How Did Dr. Shoemaker Think HLA DR Haplotypes Make People More Susceptible To Moldy Buildings??
In people who have been exposed to a water-damaged building, we are looking at major histocompatibility complex II (DRB/DRQ). We inherit one gene from our mother and one gene from our father. The genes express proteins on the cells surface. Their job is to change a cell into an antigen presenting cell. They grab a protein and present the antigen to the acquired immune system. People with mold susceptibilities were thought to have variants of HLA DR Haplotypes that render them unable to react properly. (The primary mold-susceptible types were thought to be 7-2/3-53, 13-6-52 A/B/C, 17-2-52A, 18-4-52A.) This was thought to make their immune system unable to present the antigens appropriately. It was thought that 25% of the population was under-reactive. There are additionally other types of HLA-DR haplotypes that were found to inadequately react to other biotoxins besides mold. They include biotoxins from jellyfish stings and bee venom. When a person has specific HLA-DR haplotypes that do not react appropriate to mold toxins and they are exposed to mold toxins, their immune system will not react appropriately as mentioned previously. It sets into motion an inadequate reaction that does not remove the toxins, but it does initiate an inflammatory state in the body that can cause a lot of symptoms. However, the mold toxins are never removed. They stay in the body and cause the immune system to continuously be on alarm as the APCs ineffectively try to get the rest of the immune system to remove the mold toxins.
The person ends up being in a continuous inflammatory state.
HLA-DR testing was thought to be useful in identifying people who are unable to remove certain biotoxins and are more susceptible to those types of biotoxin illness.
Dr Ritchie Shoemaker kept extensive notes on mold susceptible people to identify the HLA haplotypes that cause this susceptibility to mold toxins. The people with these specific haplotypes were thought to not be able to remove the mycotoxins from their body like other folks. These people can end up with a condition called Chronic Inflammatory Response Syndrome (CIRS) due to water-damaged buildings.
The notes kept by Dr. Shoemaker showed that his patients with CIRS due to water-damaged buildings shared specific HLA-DR haplotypes. If a person had chronic fatigue type symptoms and a mold susceptibility is suspected, the test was thought to show if they are indeed one of the susceptible haplotypes. Usually, they were first given a VCS test. If they do not pass this test and they have a history of being exposed to a water-damaged building, an HLA-DR haplotype test would give an indication to the practitioner that this patient may be reacting to mold mycotoxins. Other tests are also usually used as indicators too."
{End of https://www.survivingmold.com/ content}
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Where does this leave me, in regards to connecting the dots with factual medical diagnosis?
1) I bombed the VCS test two weeks ago when I took it.
2) I tested positive as highly reactive to a lot of allergy shots I got at EHC last week:
They were all different strains of Mold, Candida, and Histamines. This shows that I am highly reactive to all of these issues.
3) Our house's gutters fell off this past fall/winter.
4) Our house flooded this winter/early spring at some point.
5) Joe and I found a large bunch of visible mold in our basement corner while clearing out a gigantic cabinet that was left in our home when we bought it. I can only imagine if it is visible in our basement, that it is probably somewhere else in home also.
In a nutshell, here I am :
Incredibly ill, with mold found in our home, being One that Genetically Cannot remove mycotoxin loads with my immune system.....like most normal humans can.
Spores from mold as well as mycotoxins can be inhaled from the environment Usually a water-damaged building.. Additionally, when inhaled many of them are cleared out of the respiratory system and end up moving down the esophagus and into the digestive tract.
Mycotoxins can cause gut irritation and inflammation. This leads to a leaky gut and a whole host of systemic symptoms, and/or opens the door for other bacterial/yeast/fungal infections.
You can also become colonized by the mold causing further issues.
^^This has been my past ~6 months compounded^^
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(Current reflection: after looking back on all of my life history and environmental exposures and health issues- this was a life long battle for me that shifted either for the better or worse when my environment changed- as my family moved housing generally once a year due to poverty and other issues of instability. I have long had issues with sinus infections, ear infections, gut problems, and other sensitives that align with Mold Exposure, Mold Illness, Candida, Trauma, and MCAS. Just nothing ever anywhere near this bad because Mold became such a catalyst for me in this house.
I never knew about these conditions or issues as a child, I was told I was being too dramatic and to stop annoying people with my illnesses, & sensory/chemical issues and thrown onto antibiotics occasionally for my other issues.)
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At any rate, I love you all and wanted to share what the heck has been going on over here.
This whole thing has really made me realize nothing matters in life besides the people you love, and just enjoying every simple pleasure of life.
I love you all so much,
Britany LiButti
PS , Holistic health management is so vital, please be sure you are working with a Primary or Care Team that are open to listening to you and working in partnership with others to help you. <3
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August 4, 2020
Hello you lovely lovely people, The shots I take in the evening (3) have been kicking in and while I am still really very run down by the end of the day I am able to be with the kids, manage my medical load, and start moving through fixing the environmental part of my protocol. Thank you all for the support, I don't think I could ever tell everyone how much this means to us to have all of your support; once again, I'm sorry that if next time I see you I just start weeping loudly or I just stare at you and can't form words. Every one has been amazing to our family. <3 We had an air sampling mold tester come and take mold and air samples for us all over the house (they so kindly didn't even charge us for extra room samples when I wept and begged for all of the rooms,) and while he thinks the majority of our problem is our terrible basement there are a few smaller areas he gave us advice on fixing. They all had water damage. He's pretty sure he found 2 or 3 separate kinds of molds growing in the corner of our basement and also (somewhere we didn't see), up in our floor joists. Since we have forced air heating, basement mold spores/mycotoxins have been just blowing everywhere for us to enjoy breathing in and touching and eating. He sent the labs over and we should know by tomorrow what they found and begin to schedule remediation. We are still calling around and looking for a gutter repair place that came come sooner than 2 months from now. I got a lead from the mold specialist, but haven't heard back yet. If anyone knows a friend that has a gutter business and could handle another job asap please let us know! Love you all,
Britany
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August 6, 2020
We got the Air Sample lab results back and the air sampling/testing company wrote up our remediation plan today and will send it over tomorrow am.
They found Penicillium Aspergillus and Cladosporium in our basement in large swaths of areas. They're going to need to remediate all of the walls of our basement and a couple joists that were covered, and then we will go ahead and seal any leaks/cracks in the mortar of the basement better. So as soon as we get the report we can call to begin remediation, but we are still waiting on gutters. Thank you all again so much for helping us along the way- I have no idea where we would be without you all. Thank you Katie for bringing us printed documents we constantly need and the large beautiful air purifying spider plant. Detoxing today was really hard symptomatically and fatigue-wise but the spaces of time in between detoxing waves are becoming more enjoyable and I am feeling a little stronger. I did "Circle Time" (teaching with the kids) yesterday, and have done some crafts with them and began actually helping them learn things again, and I actually "slow jogged" today during my 45 minute nightly exercise... I haven't been able to do that since April. I smell insanely godawful most of the time, but am taking it as a good sign that my detox pathways are open and moving. Love to you all, thank you thank you thank you!
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August 10, 2020
(Husband Journal Post)
Hey this is Joe checking in quick. just wanted to say we're overwhelmed by all the support and don't really know how to thank everyone enough. As far as where we're at, the remediation report should be ready any day now and in the meantime we're trying to do the more minor stuff (sinks, crack patching, cleaning) that they left for us to try and save some money. Brit also got a huge Austin Air purifier going that should help the recovery some, and we got a date scheduled to have all the ducts cleaned and then coated with tea tree oil (anti-viral, anti-bacterial, anti-mold.) Still calling around trying to find someone to do the gutters sooner than two months from now since we don't want to undo the whole intense basement remediation when it rains bad and floods again because the gutters don't work. The shots and binders Brit's on now to boost her immune function and bind everything out seems to be helping but it's still probably gonna be a long recovery and it means a lot to know there's so many people helping to finally knock this thing out! Anyway we'll update again when we know more, it sounded like the mold in the basement was pretty rough, hopefully the remediation plan isn't too brutal. Thanks again everyone and stay safe out there!
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August 17, 2020
Hello everyone, I wanted to send some updates your way, as you all have been most helpful on this journey with us. We are currently still in the "do what we can immediately at home" phase to help ourselves create and maintain a healthy environment we can heal in. In the past few days we have had our friend Chip come over and help take down 4 trees. Two were on the corners of our home, digging their roots into our foundation, and the other two were causing too much shade in our backyard, leading to damp areas of musty lawn, and mold growth in the lawn itself.
Thank you Chip!
I have started to (in a very carefully protocol following and masked/hazmat clothed manner) take out cabinets from under our bathroom sink, and hopefully will get to at least exploring the options under our kitchen sink this coming weekend. It wasn't written up in the remediation report for us because the areas were so small, but it was suggested for us to take everything out and away (wood wise) from our under/around our sinks and to sand and sanitize everything down and ensure that no leaks are happening there that could cause mold in the future.
In bummer news, Matilda seems to following in my footsteps and has been showing more signs of having issues with mold/mycotoxins by exhibiting symptoms similar to mine (and I have not told her or Winnie about what or how I am feeling besides a general "ugh mom is having a tough day today, or my stomach is upset.") We played a "fun computer game" together a couple days ago and Matilda failed the VCS test. I called their Ped and updated them with that info along with the increase in other symptoms over the past two months, and the information we got back from the mold tester- that there were mold spores in the kids' room that matched the basement (must have made it up from the basement through the vents.)
Their Ped started them on a daily antihistamine to help them be able to get foods down that have histamine or release histamine; (Matilda can't tolerate them anymore they give a slightly allergic reaction- same as me). I'm slowly weaning Matilda onto my low histamine Paleo diet but it's hard to do when kids are ..... well kids. As long as nutritional intake seems balanced for Matilda though and they don't seem to be in crazy distress, we are just making whatever foods that work happen atm. From your funds some far we have gotten so much that we would not have been able to accomplish ourselves- you are is keeping us all functioning, and we are working to move forward. We are super grateful for: -A month of Nutritional Supplements for me -Binders for me -Binders for Matilda -Weeks of insanely pricey organic/low histamine diet foods for me and Matilda (Eating totally organic and also various large amounts of meat 3x a day is a seriously wild amount of differential of cost for food than we are used to) -1 Austin Air Healthmate Plus purifier -2 dehumidifiers (basement + kitchen) -1 humidity monitor for the house -1 new AC/dehumidifier unit for the kids' room (old one I opened and found mold in it) Lots of sealed glass storage wear for all of the foods I prep or keep in the fridge. (We found some mold in the back of our fridge and cleaned it out well, but I am still v paranoid about mold for obvious reasons.) -A new wagon for the kids so that when I am absolutely drained from symptoms I can still fake it and drag them around on walks or to places we need to go when we run errands. It's too difficult to carry them for longer than a few minutes, and they have outgrown their double stroller. -We also paid the first half of our bill for the new gutters/covers/and downspouts. They should be coming in a week and a half! :) -And also ....More helpful things I am currently forgetting due to the brain fog. We are looking into Medicaid as a back up type of insurance, just to see what other kinds of options we have because this is all so crazy expensive. It is heartbreaking to read hundreds stories online about people with mold illness that insurance doesn't recognize as a real serious illness and /or having to lose life savings or go tens of thousands into debt for medical treatment or remediation or running labs and tests to chart their progress. <3
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August 22, 2020
Hi everyone. I'm having a really couple extremely difficult days symptom-wise again so either I am struggling with my detox pathways staying open, or I'm getting another round of candida coming back (mold and mycotoxins open up the doorway for other opportunistic fungi, bacteria, or parasites- until the mold is out of our house and out of me, it's just laps of working through infection, trying to detox at the same time, and working on staying stable). I'm not feeling terribly excited about either of those things, and Joe and I have both been struggling mentally the past few days, but I am trying to stay present and mindful that we are really close to remediation and then afterward we will hopefully be able to focus on healing- not just getting through each day- which is where we are now.
The more I read about mold illness, mycotoxin illness, and accompanying infections- the more I get feeling restless. It is such an all-consuming thing and it has only started to become a more popularly studied idea within the past 15 years.
Typically, it takes around 18 years for a 'new' medical idea to gain traction as a formal idea/theory and for it to begin to be studied and taken seriously by a larger percent of the medical community. This is one of the reasons it has been so difficult to get answers about what was happening to me, (and now subsequently our children and maybe even Joe to some degree I don't know). I get so resentful and mad sometimes because I remember all of the normal things I used to be able to do, and how strong and healthy I felt about myself and my body; I'm not in the same place anymore and it is incredibly frustrating. I see people running with their kids, people eating treats, people just being bored... and I am so envious. There are so many "I cant's" at this point in navigating my (and my family's) health that sometimes they just drown out the "I cans." And it is just 24/7. Sorry this went to a dark place, my apologies. I've been pushing myself into positivity really fiercely lately for the sake of the kids, and Joe, and myself to a degree but I'm human and this is all very overwhelming and sometimes I break a bit. Thank you all again for your help. I could not imagine where we would be without a community of friends and family that actually help us. I really just don't even want to think about it. Further updates: So far all of your support has paid for every other thing we have needed immediately and are currently paying ahead for, and thus we've used mostly all of the current GoFundMe- it all added up quickly. You have all saved us, really. Thank you. I looked in to other financial options for us to cover remediation, as currently that is the last thing we hopefully should need to pay for before we can move forward. Joey's paycheck over-qualifies us for supplemental medical insurance aid by ~50 /week. The same ^ holds true for 4 different grants/loan programs we have looked into. (Still looking for other options).
Mold illness is a very difficult thing to get recognized by medical insurance as an actual illness and to get tests and treatment covered by insurance so I am in the middle of a partial reimbursement battle with our insurance, and they will only pay out my doctor, not reimburse us, so I have to see if they are willing to just pay us from their business or if they can just start an on-file billing system with us and just save the reimbursement our insurance gives them for my next round of allergy shots and serums coming up in a week or two. Our gutters are getting installed on Tuesday of this week (OMG FINALLY) and we are getting in contact with remediation to see how soon after that we can fix the basement and whatever else they recommend in the report. I just want to sprint to the end of this all, and help our family heal, but I keep reading and reflecting and have to (forcefully) remind myself that it is still going to take a good amount of time and I have to try to be okay with the slowness of this all. Thank you all for offering up $10, $20, $50 whatever you can find to share with us. I don't know how I can repay everyone, but once I am more able please start throwing your (non moldy lol) home repair odd jobs, or babysitting needs, or whatever you got at me and I'll try to compensate you back for your tremendous help now.
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September 2, 2020 I met again with the doctor that is treating me for mold illness/mycotoxins/subsequent gut dysbiosis. We looked over blood work I got a month ago and it's revealing immuno-suppression; (Mycotoxin-induced immuno-suppression may be manifested as depressed T or B lymphocyte activity, suppressed immunoglobulin and antibody production, reduced complement or interferon activity, and impaired macrophage-effector cell function. I am still in the water damaged building (our home), It seems that for my body to get this damaged all of this mold/mycotoxin stuff must have started off slowly when we moved in and collected over time (no mold issues were noted in our home inspection, Joe and I didn't notice the mold while we've been here, and I wasn't effected enough by it to go looking really until this summer.) The flooding of our basement this winter/spring really making symptoms explode and increase in intensity. My doctor suggested that we need to start the next phase of treatment now and doesn't want to wait any longer and lose any time. They are concerned about the possibility of cancer in the future if I cannot clear out the mycotoxins and also create a living environment completely free of mold and mycotoxins. (How does that happen? https://www.spandidos-publications.com/10.3892/or.2017.5424) We are working on opening and supporting all of my detox pathways (liver, kidneys, lymph nodes) with additional supplements I started today. Detox works best with cleared pathways. Otherwise, you cannot get them out of your body is your detox pathways are closed; you end up re-circulating toxins in the body and they eventually re-land somewhere new start causing problems again and that is majorly painful and not great for any reason. A new addition is that I give myself a shot of Peptides every day in order to help support and protect my immune system. ( I can't find a decent article atm to explain that well enough to you all, sorry.) We added taking Glutathione to support my detoxing and try to ward off acute or chronic illness due to the lowered amount of naturally occurring Glutathione I have in my body atm due to the mycotoxins. Glutathione is the Mother of all Antioxidants. We also added taking a B (vitamin) complex as mold depletes these. Other awesome treatment ideas were suggested but unfortunately I had to put them on the back burner because of cost atm. The kicker is that while we are working our hardest to push the timeline of how quickly remediation can happen and we can retest air quality to see of our home is okay- everything is taking a while. And while I remain in our home I am continuously breathing in the same air that has made me sick. Therefore, I cannot actually begin to work on healing until everything is fixed and sanitary enough. It's extremely hard to try and explain how I am taking so many supplements and medications and why I am not "getting better". It's a valid question but one that many people seem to have a hard time understanding the answer to. I do feel as though some of my symptoms are being helped along by all of the support I am giving them with Dr. Patel's excellent vigilance to individualized details and medical knowledge. From where I was in February, March, and April of this year (literally in bed, on finally- crawling around my house on my hands and knees or having Joey walk or carry me around, unable to even brush and put my kids' hair up, and spending the majority of my time in bed or in the bathroom-... I do feel as though at least I have gotten back my ability to do more with the kids, and around the house.
It is all still very difficult but I can dig down and do a lot more independently. Is it hard? Oh my, yes. But I am still in the environment that is creating conditions that are harmful to me. True healing won't happen until our home has a level of mold low enough that I can manage to not react, has water issues fixed with no water leaking anywhere, humidity of our home down to consistently around 40-45%, and has been correctly cleaned of mycotoxins.
Either that or we have to move. My doctor is practical and grounded and tells me like it is; they shared today that realistically with where my blood work and symptoms are at, with her experience and knowledge, she recommends that we move. I explained how much work we have done so far to create a dry, and purified home and how much more we have until remediation is done. I outlined our specific plans and it was reiterated that their professional recommendation is 6 more months here should be the last cutoff. We have to move at the point if everything isn't fixed and my blood work isn't on the up and up. They closed our meeting by letting me know that they understand how much difficulty mold illness causes and that they would do everything in their power to help me recover and our kids as well should they need it if their pediatrician isn't quite as knowledgeable or accepting about mold illness/mycotoxins (we are just beginning navigating Matilda's situation with their ped atm). Welp. There's the update. It's been draining to deal with but I am feeling more positive about things again. We are working on getting equity upped so we can do the basement and see about investigating a leaky bathroom pipe as well. We are also applying for a few more loans/grants. Our insurance officially told us yesterday that they wouldn't cover Dr.Patel or my treatments/supp.s/anything through them because they are out of network, that is until I spend $6000. after that they'd pay 60% of invoices only if deemed medically necessary.
It is impossible to get an insurance company that doesn't recognize mold illness as a real illness to consider anything you need medically necessary.
They can medically necessarily eat my entire ass. I'm going to continue to want to see the only medical professional that has done anything meaningful for me and subsequently my family. Guess we have to deal with the financial fallout.
If anyone knows of any loans or grants for home owners fixing their homes please let us know. You have all been astoundingly generous to us so far, thank you. Thank you forever.
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February 10, 2021
Hey all: Huge amount of information coming your way: We've done almost every single thing we possible could have to get our house free and clear of mold and/or moisture the past four months: -Hiring out for complete remediation/mold removal in basement -New gutters/downspouts for entire house -HEPA purifiers in every room upstairs, one giant Austin Air Health Grade Plus Air machine downstairs in the common open living room/kitchen/dining room. -Resealing with concrete work and masonry sealer 60% of our basement walls where the moisture seemed to have seeped in through the sides in bad rain/snow melting. -Stripping the kitchen and half our dining room down to original studs, sanding and resealing. - Hiring out replacing our cracked sewer pipe in our basement. - Hiring out replacing our entire plumbing stack in our house. -Removing all cabinetry in our bathroom anywhere 3 feet away from plumbing lines. -Removing all kitchen cabinetry. Throwing out all base cabinets, checking/sanding/resealing/repainting all upper cabinets. -Removing all bushes, trees, extra plant life anywhere between 6 and 10 feet away from all sides of our house. -Regrading the entire outside foundation around our house: concrete work and masonry sealer. -Treating with Deacon 30, 5 separate times over a period of 3 months- even though no mold was actually found on any studs remaining in any of the workspaces (basement kitchen and dining room. -Sealing the studs. -Rebuilding walls with mold resistant drywall. -Having entire ventilation system of the house cleaned out. Negative air pressurized suction and following with a tea tree spray coating. (Anti-bacterial/ Anti-microbial.) -Removing two layers of old kitchen floor and checking and sealing the original base floor of the kitchen. -Reinstalling new moisture resistant flooring. -Painting walls with Kilz Mold resistant primer -Repainting with low/no VOC paint -Resealing around the rear door of the home. -Resealing the windows downstairs of our home until we can afford to replace them. -Removing all carpet throughout the home. -Removing, checking and replacing all walls that run up along the plumbing line throughout our home. -Creating an easier access ceiling area in the kitchen in order to check on the main plumbing stack and under the bathroom in case we are worried about leaks in the future. -Installed a new plumbing line under our kitchen sink, replaced our old sink with a very deep sink in order to lessen odds of splashing liquid out. -Added over stove ventilation to create negative air flow out of the lower level of the house. -Dehumidifiers in attic and basement set to 35% always on. -Humidity and temp readers in kitchen, bathroom and basement.
-Removed cabinetry in the bathroom and examined for mold. Did triple sanitation just in case: high percent hydrogen peroxide, straight vinegar, Decon 30. -Installed new sink in bathroom with deep bowl to lesson splashing. -Bi-monthly Decon or Zeb sanitation of the basement, and Hepa vacuuming that follows in basement. -Nightly walks to the basement/around the house looking and smelling to check the environment. We still have some upcoming projects ( ie. our roof! and attic) and then I have no idea what else we could possibly do. I am beginning to try to get the kids in for treatment soon. The kids' ped. clearly thinks I am overreacting, but admits she doesn't know much about mold and she said she would fully be on board with doing treatment, following the lead of Dr. Patel at EHC.
So next step for the kids is that we start intake for them under Dr. Patel. Since we last spoke, I did a 23 and me DNA test to obtain my DNA SNPS, which can give me some insight about my ability to detox and specific pathways that may or may not work well for me. Some I'm ready to share, some I don't completely understand yet. The education is a comfort though because it shows there truly is a why to all of this, and being able to look toward science and new treatments is both interesting and gives me hope for myself and the kids. Pertinent information for me is: hetero MTHFR mutation (issues with detoxing in general), HLA DR type (susceptibility for issues with mold and mycotoxins), genetic issues with DAO degradation (affects histamine). I know there is more but I haven't looked up and read about it yet.
The exciting part about reading about SNPS and genetic info is the epigentics- and how we can turn on or off certain SNPS based on a lot of other factors. So I am looking into learning about how I can use knowledge about my genes and their expressions to take me to optimal health eventually. New news from Dr. Patel: My mycotoxins urine test came back- I'm absolutely riddled with mycotoxins. Living in a water damaged building with mold where we couldn't see it until it got crazy bad was the trigger. My genetics and susceptibilities were the loaded gun.
(Current reflection- oh girl, you can't just blame this house- you have got a LIFETIME of this shit built up. This house did set you off majorly though, it was baaad.) Our indoor environmental air tester didn't even think anything was really bad at our home when he visited until he got results later on. He said everything looked fine except one spot in the basement. ...It wasn't. Our Current ERMI 6, (still high for common house molds) and HERTSI 8 (safe from the most toxic molds!) This was post-remediation in the basement and up the walls to the bathroom where another leak and mold was found.
This was before we removed all of the carpet from our home, mistakenly I realized afterward that keeping the old carpet would contaminate the sample leading to higher results. We will need to retest again in the future. More updates for the treatment side: I have officially been bumped up to the next step of my Mold/mycotoxin treatment plan- My Dr. is kind of smooshing a couple steps together at once for me as I am quite ill.: I am slated to begin coming in for 4.5 hour sessions twice weekly of: 1) Lymph drainage machine treatment 2) IV Ozone therapy (hooking me up and running my blood through a machine that treats it with ozone and UV light before reentering my body.) 3) IV Vitamin C 4) IV minerals 5) Hyperbaric Oxygen treatments 6) Infrared Sauna 7) Vibration Plate Here's hoping we can find a way to afford it all. Please feel free to share this with anyone. We need the help, and equally as important I feel like education about any and all of this stuff will help some one in some way. I don't EVER want anyone to feel any of this, and if they do I want them to know they aren't alone. Love you all. Will update again soon. <3 -------------------------------------------------------------------------------
New Update Coming soon! It's been a wild half year of treatments, fixing the home, and starting Matilda's health journey. We will keep sharing our story.
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