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Help Christian with medical expenses for CIRS

Chris Torres is organizing this fundraiser.
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Hi, my name is Christian Navarro-Torres (age 33). I was born and raised in Puerto Rico. In 2021, I received my Ph.D. at the University of California, Irvine, and recently began a postdoctoral research position at Princeton University with the hopes of fulfilling my dream of becoming a tenured academic researcher and professor at a university. In 2021, I was diagnosed with a relatively unknown condition known as Chronic Inflammatory Response Syndrome (CIRS), and am seeking donations to cover essential medical-related expenses for treatment and recovery.

BACKGROUND

I have been fortunate enough to have lived a life full of joy and energy surrounded by wonderful friends and family. But in early 2019, my life took an unexpected shift when my health began to deteriorate inexplicably. I started developing severe gastrointestinal problems that led to severe weight loss, nutrient deficiencies and anemia. I spent the following year at the UCLA medical center trying to find an answer. After dozens of tests (including stool tests, extensive bloodwork, MRI's, CT scans, and two upper endoscopies), doctors found that I had developed food malabsorption due to pancreatic enzyme insufficiency. But the the doctors at the time could not identify the underlying cause. After beginning pancreatic enzyme replacement therapy (PERT) to support food digestion, my digestive symptoms improved and was able to partially regain control over my body.

However, following several months of enzyme treatment, my initial digestive problems returned with new symptoms that progressively got worse . I developed extreme food intolerances and allergic reactions that further led to weight loss and nutritional deficiencies. Within a year, I had gone from 148 lbs to 100 lbs, as you can see in the picture below
Shortly after, I began experiencing a host of other symptoms, including cognitive problems (brain fog, difficulty concentrating, speech difficulties), motor imbalance, dizziness, joint pain, unusual extreme fatigue, heart palpitations and arrhythmia, severe anxiety, nausea, vomiting, constipation, among several other symptoms. 

After several visits to the ER with no answers, and thousands of dollars spent on tests, I grew desperate, and found my way to UC Irvine's Susan Samueli Integrative Health Institute. Doctors at the institute finally began to identify several important problems in my body. Several tests revealed that I had intestinal dysbiosis (an imbalance of the gut microbiome), a fungal infection in my blood, a severe deficiency in white blood cells and in igA antibodies (these are the antibodies that reside in the membranes of your intestines and other tissues to protect you from infections), indicating that I was immuno-compromised. I was also told that my vascular system was severely damaged/inflamed, and that I was at high risk of developing cardiovascular disease despite being a young healthy person (age 32 at the time) who regularly did plenty of exercise through sports and strength/weight training. Following many treatment protocols between the summer/fall months of 2021, I was ultimately identified as a CIRS patient. 

WHAT IS CHRONIC INFLAMMATORY RESPONSE SYNDROME (CIRS)

CIRS is a systemic inflammatory response from your body that can be triggered by a host of environmental factors, often from prolonged exposure to mold (e.g., in water-damaged buildings, or structures with high levels of humidity and poor ventilation) as well as other pathogens. 

CIRS is more likely in genetically predisposed individuals such as me: I have a genetic mutation that does not allow my body to eliminate toxins related to mold. Mold and fungal organisms release toxins known as mycotoxins that can be highly poisonous to the human body. Most people will secrete those toxins out via their urine, stools, and/or sweat. Unfortunately, for individuals like me, the body cannot eliminate them. These mycotoxins will begin to accumulate, causing extensive damage to cells and organs over time.

Eventually, the body is unable to cope with the amount of mycotoxins circulating in the body. This will trigger a hyper-inflammatory state where all of the major systems (hormonal, nervous, digestive, neurological, cardiovascular) become dysregulated and dysfunctional. The body is unable to turn off this inflammatory state on its own. As CIRS progresses, individuals become more hypersensitive to mold/fungal exposure, be it mold itself, spores, or from the mycotoxins released by fungal agents. Each exposure event will further increase inflammation. Over time, this can lead to a host of chronic disease, such as cardiovascular disease, autoimmune disease, fatty liver disease, renal failure, diabetes, dementia, and cancer.

TREATING CIRS

Thankfully, CIRS patients can make full recovery through highly specialized medical treatments that "turn off" the  inflammatory state. But very few doctors are trained to treat CIRS. As such, treatment is very expensive, requiring several expensive tests and medical consultations, and radical lifestyle changes (including a strict diet, relocation to a mold-free home, medical grade air purifiers, as well as medications and supplementation to keep the body functional) not covered by health insurance.

HOW CAN YOU HELP

Now that I have been officially diagnosed with CIRS, I have been able to find some peace and comfort in knowing that my health issues have a name and treatment. But the road to recovery is long (according to my doctor, it can take up to 12 months before making full recovery) and expensive. At the moment, I am in great need of financial assistance to begin CIRS treatment protocol with Dr. Bianca Chiara, an MD in the New Jersey area who specializes in CIRS patients (https://www.ifm.org/practitioners/bianca-chiara-md/).  

Your support will help cover essential treatment-based expenses. This includes medical appointments, medical tests, essential medications/supplements, nutrition-based expenses, IV therapy, and medical equipment. Below is an estimated breakdown of the essential expenses for each of these categories. Please note that all of these expenses are required by the treatment protocol and won't be covered by medical insurance: 

1. Doctor consultation

  • First appointment: $525
  • Follow-up appointment: $375
  • Subsequent appointments are $300 per session. These are expected to be held three times per month ($7,200).
  • Estimated total amount for 12 months = $10,000

2. Environmental test
  • The first step in the treatment protocol for CIRS is to remove the patient from exposure to indoor/household mold. Patients cannot begin the rest of the treatment without fulfilling this. Patients need to collect dust/mold samples from their house using the ERMI test, which was developed by the US Environment Protection Authority (https://www.envirobiomics.com/product/ermi/). If the patient needs to remediate the house or relocate, the test will need to be repeated, and will need to be conducted multiple times thereafter throughout the treatment. Note that if the mold count is too high, the patient cannot begin and/or complete the treatment protocol (Price per test: $240). 
  • Estimated total amount for 12 months = $4,000

3. Medical tests (see https://toxicmould.org/medical-testing/#what for a comprehensive list of tests done to diagnose CIRS). These tests wikk need to be repeated multiple times throughout treatment to track progress.
  • Dutch Plus test (https://dutchtest.com/info-dutch-plus/). This is a comprehensive adrenal/hormonal test. CIRS patients typically have a host of hormonal imbalances that need to be corrected with medications and supplementation (price per test: $399).
  • MARCONs swab test. This test determines whether the patient has a bacterial respiratory infection that is usually found in CIRS patients. Eliminating this bacterial infection is essential to allow recovery of the immune system, as well as correct several hormonal imbalances (price per swab test: ~$85).
  • RealTime Labs mycotoxin test (https://realtimelab.com/mycotoxin-testing/). This is a urine test that determines which mycotoxins (there over several dozen depending on the mold type) the body is secreting. This is important to determine the type of detoxification protocol needed, and will need to be repeated multiple times to track progress with mycotoxin detoxification (price per test: $399). 
  • GENIE genomics test (https://www.progenedx.com/genie-surviving-mold). When CIRS becomes active in a person, there are a series of genetic markers that become active as well, and are responsible for telling the immune system to send inflammatory signals throughout the body. These genes are usually turned off in a normal person, and can also be turned off in CIRS patients with the treatment. This test is used to assess and confirm whether these genes are active and whether they have been successfully turned off after undergoing the full treatment. The test will need to be repeated multiple times until I make full recovery (price per kit ($720).
  • Estimated total amount for 12 months = $18,000

4. Medications/Supplements for long-term use
  • General detoxification binders (see link for a list: https://www.greatplainslaboratory.com/gpl-blog-source/2021/20/mycotoxinbinders). In addition to mycotoxins, CIRS patients will also have trouble eliminating other toxins due to a compromised and overburdened liver, many of which are not eliminated with Cholestyramine. These toxins include heavy metals, chemicals, and microbial volatile organic compounds, as well as some mycotoxins produced by different mold variants. These can be eliminated with a combination of different binders and detoxifying agents (including chlorella, charcoal, clay, zeolites, and certain probiotic strains), many of which I will need to take on a long-term basis (estimated cost for one supplement set: ~$400). 
  • Estimated total amount for 12 months = $28,000

5. Medical-grade purifiers and essential cleaning supplies
A critical part of maintaining a mold-free environment during the treatment is the use of medical-grade purifiers that can trap mold and the mycotoxins that they produce. Mycotoxins are as tiny as virus particles (less than .03 microns), and there are very few purifiers that are certified to trap particles as small as those. Here is the basic setup I will need, per the doctor's recommendation, to keep both my apartment and work environment mold/mycotoxin free:
  • Air Oasis G3 (https://www.airoasis.com/shop/ionicair-uv-purifier/). Unlike the other two purifiers, which trap particles using filters, this purifier is filterless and uses an ionization technology designed to deactivate any remaining particles in the air and bring them down to the ground. The combination of the filter-based and ionization-based purifiers has proven to be highly effective for CIRS patients. One unit will be used at home and a second unit will be used at work (Price per unit: $500). 
  • HEPA vacuum: (https://www.dyson.com/vacuum-cleaners/cordless/v15). A second critical component of keeping the living space mold/mycotoxin-free is to remove any remaining particles on surfaces. Standard vacuum cleaners are unable to reliably trap the smallest particles produced by mold and other microbes. Instead, HEPA vacuum cleaner are needed to ensure these particles remain trapped in the vacuum. Separate Dyson V15 units will be used at home and at work (Price per unit: $700). 
  • Total amount = $10,000

5. Low-mold diet (see the following pdf link: see chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/viewer.html?pdfurl=https%3A%2F%2Fnatmed.com.au%2Fwp-content%2Fuploads%2F2021%2F07%2FCIRS-Diet.pdf&clen=4327133&chunk=true for an example of the diet).

CIRS patients must abide by a strict dietary regimen during treatment. There are three key aspects that the dietary plan needs to cover: 1) the foods that I eat need to be anti-inflammatory; 2) they cannot be contaminated with mycotoxins; and 3) they need to be nutrient dense in order to overcome and avoid vitamin/mineral deficiencies. For point 1) CIRS patients need to follow a low-amylose diet during recovery. For points 2) and 3), my diet has to include grass-fed and pasture-raised animal products that include regular consumption of organ meats, wild-caught fish high in Omega-3, healthy unsaturated fats, and organic non-starchy vegetables. I am expecting to receive government assistance through  the Supplemental Nutrition Assistance Program (SNAP) to cover some of these food expenses. But other foods will have to be out of pocket. Please note that donations are only meant to cover food expenses for the duration of treatment. Here are the two essential out-of-pocket expenses:
  • Grass-fed meats/poultry (https://northstarbison.com/collections/low-histamine-meats). Conventional animal products are usually contaminated with mycotoxins as these animals are fed a diet that is prone to getting contaminated with mold (usually grains and corn). Just as our bodies can absorb mycotoxins, animal bodies will go through the same process. The only way to minimize this problem is to consume animals that are fed grass and allowed to free roam in pastures (Average monthly cost: ~$500).
  • Wild-caught salmon (https://www.vitalchoice.com/products/wild-sockeye-salmon). Unlike animal products, wild caught fish are not contaminated with mycotoxins. Moreover, fatty fish such as salmon are high in Omega-3, which I will need to be consuming regularly in very high amounts to manage inflammation. These fish cannot be farm-raised, and must be low in mercury, as metal-poisoning is often a problem in CIRS patients that will further exacerbate inflammation (Average monthly cost: ~$500).
  • Total amount = $12,000 

6. IV/Ozone-UBI Therapy
The last essential expense involves the use of IV/Ozone therapy (link to the clinic: https://ivtherapyozonewellness.com/) to avoid nutrient deficiencies and minimize inflammation stemming from pathogenic infections in the blood. Although a nutrient-dense diet can help minimize deficiencies, my digestive tract is so inflamed that often not all nutrients will be properly absorbed. This is where regular monthly doses of IV therapy can help ensure the body is getting sufficient levels of vitamins, minerals, and antioxidants that help the liver function. CIRS patients also often have a host of bacterial, fungal, and parasitic infections in their blood because the immune system is not working properly. A combination of ozone and UBI therapy will be used to help eradicate a host of infections that have taken control of most of my body. Both of these therapies will be done on a monthly basis for a total of 10 sessions (IV therapy price for 10 sessions = $3,000; Ozone-UBI therapy price for 10 sessions = $5,200). 
  • Estimated amount = $8,000 

ESTIMATED GRAND TOTAL = $90,000

There are several other expenses that are not included in the above estimates, including additional medications, tests, nutrition and nutritional counseling, as well as several additional supplements. I intend to cover these additional expenses with my own money. I know many of us are going through a difficult time, which is why I will greatly appreciate whatever amount you are able to donate (and it's totally okay if you're unable to do so as well! I've been there myself). As a donor, if you are interested in following my progress with CIRS, I am more than happy to write to you and keep you informed with updates and provide additional information about the treatment protocol and such.

Thanks for taking your time to read this,

Christian

P.S. If you are interested in learning more about CIRS, here are some additional links:

A summary of the CIRS treatment protocol: 
https://www.woodlandhillspharmacy.com/askapharmacist/biotoxin-illness-treatment-protocol/

A series of in-depth video lectures by Dr. Andrew Heyman that extensively cover the most recent assessment and treatment protocol for CIRS. I highly recommend these for anyone who wants a detailed and nuanced understanding of everything that the illness entails:

Part 1: https://www.youtube.com/watch?v=31Ftaa_PBRk
Part 2: https://www.youtube.com/watch?v=7dPNjLhe2OY
Part 3: https://www.youtube.com/watch?v=5UQuYBr0Mqs
Part 4: https://www.youtube.com/watch?v=uvNtf1lSp1k



 

Organizer

Chris Torres
Organizer
Plainsboro, NJ

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