LiButti Fam Med Fund- CIRS MCAS mycotoxins
Donation protected
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, 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 typical high school teen antics), and I have even birthed our wonderful two children in very different but medically straightforward ways.
From February of this year through beginning of April I was ill almost 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 .(This is not what I advise anyone to do, but after a few ER visits that shrugged me off and suggested that I instead examine my natural family's tendencies toward mental illness, I was beginning to get very frustrated and overwhelmed. Even my Primary doctor called me in April and told me point blank she has no idea what was happening and basically wished me good luck and told me I had to be my own advocate.)
I was mostly bed ridden, needed Joe to walk me down our hallway to the bathroom and wait with me then guide me back to bed. I didn't feel like I could adequately care for my children anymore 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- especially in the time of COVID.
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.
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 moniter for two weeks, had an endoscopy and colonoscopy, and no one could offer anything besides being very concerned and having little to no idea.
After losing ~60 pounds and seeing myself continuously slip further into distressing symptoms and the ER staff finally become concerned about me but have no ideas to offer, I researched further about gut dysbiosis and in the beginning of May I met Dr. Patel at EHC Buffalo who was immediately drawn to trying to help figure out my complex case and started treating me right away for Candida Overgrowth and Severe Gut Dysbiosis.
While this treatment gave me back my ability to eat food and begin to take care of my kids at home again while Joe worked from home, and lessened some of my GI symptoms, other systemic symptoms began to explode.
The complete list of symptoms I have been dealing with from head to toe daily are as follows: ( Honestly I think I forgot some but I'll update if I get to later on)
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
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
* My sincere apologies if you have been texting or calling and I haven't adequately responded back, these items have really made any extra socialization efforts absolutely exhausting
While there are so many symptoms, they are really maddening because of the nature of how and when 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 don't feel like I have any time to waste and I cannot wait for anything to get worse before I work on solutions. You all know me and how stubborn and proactive I am 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 resticted 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 fluctuating and unbalanced. My labs revealed a Genetic disposition I have I didn't know about, a Genetic HLA DR haplotype.
------------------
What the heck does this mean? ( Oh DIP, Here comes Science! ....)
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.
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 (foregin 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 (forein 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 somethig 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 particluar 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 enherit 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 susceptabilties 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 haplotyes 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 Iflammatory Response Syndrome (CIRS) due to water-damaged buildings.
The notes kept by Dr. Shoemaker showed that his paitents 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 haplotyes. 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.
------------------------------------------
Where does this leave me, in regards to connecting the dots with factual medical diagnosis?
1) I failed the VCS test two weeks ago when I took it.
2) I tested positive as highly reactive to a lot of shots I got at EHC last week: They were all different strains of Mold, Candida, and Histamines.
2) Our house's gutters fell off this past fall/winter.
3) Our house flooded this winter/early spring at some point.
4) 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.
5) I was made an individualized IgG IgE antigen serum at EHC that I have been taking for three days now, and it has allowed me to be more functional and in overall less symptomatic distress/pain than I have been.
---------------------
In a nutshell, here I am :
One that Genetically Cannot remove mycotoxin loads with my immune system.....
like most normal humans can easily do
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.
^^This has been my past ~6 months compounded^^
------------------------
Where do we go from here?
Our family needs to follow a protocol that I am hoping goes well, without having to linger on any of the steps. While I am the person that has had a immensely tough go during all of this, my children may share my genes and I have to act for them as well and get them tested or treated too in accordance with their pediatrician's guidance.
*The antigen serums last me about a month. Continuous testing occurs to see how responsive I am and if the serums need to change monthly as they are made individualized for me. This is about $1000 out of pocket monthly, (currently fighting with our insurance to get to covered. Whoop whoop America!)
*I need to take mycotoxin binders to rid my body of the ones I have been harboring and recycling all over my body that I cannot genetically get rid of myself. I need to take around 25 pills from various supplements in order to support all of my worst preforming body systems/functions so that I can stay strong enough to get through each day and work through detoxing the mycotoxins. (I have been detoxing from Candida for the past couple months and detoxing is fucking hell. I'm not excited to feel what detoxing mycotoxins that have been accumulating in my body for a long period of time will feel like, but I am ready to do it so I can move through it. I spend probably around $500 a month on supplements.
*We need to buy 2 Austen Air hospital grade air purifiers (one for each level of our home) that cover allergens, mold, bacteria, and germs.
*We are getting gutters installed asap, and also have a mold test and inspection coming up on Tuesday, with mandatory remediation to follow either Wed or Thursday of next week. I am "not allowed" to work on the house or mold myself, so we have to use a company to do it. (Also, probably the best bet for me in my condition.) I am also not supposed to stay in the house while it isn't done, but hey it's COVID (where do we even go? lol) and it's not like we really have choices so we have to move on this as fast as we can.
*The rest of the steps involve a series of more tests and medicine and supplements, and welp, money.
--------------
It is most unfortunate we have to ask for help. We don't necessarily want to, especially in a time where everyone is losing their jobs, and the government is not making supporting people in a pandemic a priority- but this is my livelihood.
The fastest we can move through this, the better the odds are for my health moving forward. I can't adequately explain the pain and emotional depths of the past few months but I can offer this- that I am more than ready to charge forward through the next pieces of protocol that can bring me back much closer to where I used to be as a person.
If anyone is able to give any sort of amount of monetary help to our family now we would be ever grateful. If anyone has any other ideas, or helpful ways to support that aren't monetary, we would be so so open to them.
Joe has been working 60-70 hour weeks and the overtime has allowed us to get this far, but with Matilda's surprise surgery coming up that we had to pay $1400 for our of pocket also- we are tapped at this point. (Fingers crossed for a stimulus check!)
At any rate, I love you all and wanted to share what the heck has been going on over here. I apologize in advance for any overly emotional lingering desperately clinging hugs and crying I present to you all in the future.
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
--------------------------
Resources for your perusal:
https://www.survivingmold.com/treatment/step-by-step (If you are curious about the protocol I am doing) ( The whole website is excellent info)
https://pubmed.ncbi.nlm.nih.gov/11249927/ (If you are curious about antigen serum)
https://www.survivingmold.com/diagnosis/the-biotoxin-pathway If you are interested in how biotoxins move in the body
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, 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 typical high school teen antics), and I have even birthed our wonderful two children in very different but medically straightforward ways.
From February of this year through beginning of April I was ill almost 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 .(This is not what I advise anyone to do, but after a few ER visits that shrugged me off and suggested that I instead examine my natural family's tendencies toward mental illness, I was beginning to get very frustrated and overwhelmed. Even my Primary doctor called me in April and told me point blank she has no idea what was happening and basically wished me good luck and told me I had to be my own advocate.)
I was mostly bed ridden, needed Joe to walk me down our hallway to the bathroom and wait with me then guide me back to bed. I didn't feel like I could adequately care for my children anymore 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- especially in the time of COVID.
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.
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 moniter for two weeks, had an endoscopy and colonoscopy, and no one could offer anything besides being very concerned and having little to no idea.
After losing ~60 pounds and seeing myself continuously slip further into distressing symptoms and the ER staff finally become concerned about me but have no ideas to offer, I researched further about gut dysbiosis and in the beginning of May I met Dr. Patel at EHC Buffalo who was immediately drawn to trying to help figure out my complex case and started treating me right away for Candida Overgrowth and Severe Gut Dysbiosis.
While this treatment gave me back my ability to eat food and begin to take care of my kids at home again while Joe worked from home, and lessened some of my GI symptoms, other systemic symptoms began to explode.
The complete list of symptoms I have been dealing with from head to toe daily are as follows: ( Honestly I think I forgot some but I'll update if I get to later on)
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
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
* My sincere apologies if you have been texting or calling and I haven't adequately responded back, these items have really made any extra socialization efforts absolutely exhausting
While there are so many symptoms, they are really maddening because of the nature of how and when 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 don't feel like I have any time to waste and I cannot wait for anything to get worse before I work on solutions. You all know me and how stubborn and proactive I am 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 resticted 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 fluctuating and unbalanced. My labs revealed a Genetic disposition I have I didn't know about, a Genetic HLA DR haplotype.
------------------
What the heck does this mean? ( Oh DIP, Here comes Science! ....)
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.
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 (foregin 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 (forein 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 somethig 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 particluar 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 enherit 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 susceptabilties 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 haplotyes 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 Iflammatory Response Syndrome (CIRS) due to water-damaged buildings.
The notes kept by Dr. Shoemaker showed that his paitents 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 haplotyes. 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.
------------------------------------------
Where does this leave me, in regards to connecting the dots with factual medical diagnosis?
1) I failed the VCS test two weeks ago when I took it.
2) I tested positive as highly reactive to a lot of shots I got at EHC last week: They were all different strains of Mold, Candida, and Histamines.
2) Our house's gutters fell off this past fall/winter.
3) Our house flooded this winter/early spring at some point.
4) 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.
5) I was made an individualized IgG IgE antigen serum at EHC that I have been taking for three days now, and it has allowed me to be more functional and in overall less symptomatic distress/pain than I have been.
---------------------
In a nutshell, here I am :
One that Genetically Cannot remove mycotoxin loads with my immune system.....
like most normal humans can easily do
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.
^^This has been my past ~6 months compounded^^
------------------------
Where do we go from here?
Our family needs to follow a protocol that I am hoping goes well, without having to linger on any of the steps. While I am the person that has had a immensely tough go during all of this, my children may share my genes and I have to act for them as well and get them tested or treated too in accordance with their pediatrician's guidance.
*The antigen serums last me about a month. Continuous testing occurs to see how responsive I am and if the serums need to change monthly as they are made individualized for me. This is about $1000 out of pocket monthly, (currently fighting with our insurance to get to covered. Whoop whoop America!)
*I need to take mycotoxin binders to rid my body of the ones I have been harboring and recycling all over my body that I cannot genetically get rid of myself. I need to take around 25 pills from various supplements in order to support all of my worst preforming body systems/functions so that I can stay strong enough to get through each day and work through detoxing the mycotoxins. (I have been detoxing from Candida for the past couple months and detoxing is fucking hell. I'm not excited to feel what detoxing mycotoxins that have been accumulating in my body for a long period of time will feel like, but I am ready to do it so I can move through it. I spend probably around $500 a month on supplements.
*We need to buy 2 Austen Air hospital grade air purifiers (one for each level of our home) that cover allergens, mold, bacteria, and germs.
*We are getting gutters installed asap, and also have a mold test and inspection coming up on Tuesday, with mandatory remediation to follow either Wed or Thursday of next week. I am "not allowed" to work on the house or mold myself, so we have to use a company to do it. (Also, probably the best bet for me in my condition.) I am also not supposed to stay in the house while it isn't done, but hey it's COVID (where do we even go? lol) and it's not like we really have choices so we have to move on this as fast as we can.
*The rest of the steps involve a series of more tests and medicine and supplements, and welp, money.
--------------
It is most unfortunate we have to ask for help. We don't necessarily want to, especially in a time where everyone is losing their jobs, and the government is not making supporting people in a pandemic a priority- but this is my livelihood.
The fastest we can move through this, the better the odds are for my health moving forward. I can't adequately explain the pain and emotional depths of the past few months but I can offer this- that I am more than ready to charge forward through the next pieces of protocol that can bring me back much closer to where I used to be as a person.
If anyone is able to give any sort of amount of monetary help to our family now we would be ever grateful. If anyone has any other ideas, or helpful ways to support that aren't monetary, we would be so so open to them.
Joe has been working 60-70 hour weeks and the overtime has allowed us to get this far, but with Matilda's surprise surgery coming up that we had to pay $1400 for our of pocket also- we are tapped at this point. (Fingers crossed for a stimulus check!)
At any rate, I love you all and wanted to share what the heck has been going on over here. I apologize in advance for any overly emotional lingering desperately clinging hugs and crying I present to you all in the future.
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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Resources for your perusal:
https://www.survivingmold.com/treatment/step-by-step (If you are curious about the protocol I am doing) ( The whole website is excellent info)
https://pubmed.ncbi.nlm.nih.gov/11249927/ (If you are curious about antigen serum)
https://www.survivingmold.com/diagnosis/the-biotoxin-pathway If you are interested in how biotoxins move in the body
Organizer and beneficiary
Britany LiButti
Organizer
Buffalo, NY
Britany Libutty
Beneficiary