In Addition to Finding a Physician Who Can Treat Mold, Understanding the Maze of Diverse Obstacles Ahead of You Can Make a BIG Difference in Getting Well and Not Going Broke
Mold Sickness, Symptoms and Treatment
By Cesar Collado
With a complex landscape consisting of Physicians not trained for mold sickness, numerous inconclusive diagnostic tests, different types of mold testing & remediation, and out-of-Pocket Healthcare costs (with or without insurance), proactive testing your home can provide more useful information at a significantly lower cost.
(Note: This article has more information than others because it ties many practical elements to diagnose, seek treatment, and to navigate insurance to avoid unnecessary or catastrophic financial expenses. There are also several linked articles that will provide more detail. Bookmark it and read over the holidays as there is valuable information)
Dr. Referral or Gather More Information? Where to Start?
I recently received an email from Dr. Joe Spurgeon, a well-known and respected mold expert who has published numerous books and articles. He, like many dedicated experts in the environmental illness field, experienced severe mold illness.
During the 1980s, when as a builder/contractor, he was exposed to moldy drywall and was hospitalized for four weeks with a serious lung infection (Aspergilloma).He currently specializes in microbial IAQ investigations in hospitals, commercial and residential properties. He has a multidisciplinary doctorate degree in Analytical Chemistry and Environmental Health.
He raised the obvious, most challenging issue he encounters when working, ‘providing a suitable answer when someone with mold related symptoms asks for a physician referral.’
It struck me that such a well-known scientist and thought leader so clearly identified this challenge. To me, it means that it is difficult to find proper medical help for anyone with mold sickness, less the few cities where such a doctor is in their area and has the right mindset to help patients with this complex illness.
I stumble as well on the topic of physician referral. It is always a challenge because there are a limited number of physicians who understand and treat mold across the US. Many people go through numerous physicians without success. I do know of a certain few physicians located in specific cities that I recommend. I also know of many who would gladly put a patient through endless, costly diagnostics, treatment modalities, and sell many supplements. I do not recommend these physicians.
I thought I would take a different approach to address this issue by making an attempt to help mold sick individuals identify things they can do first, prior to seeking a physician. (Note: I am not a physician and this article expresses my personal suggestions to gather practical information to to help navigate this life threatening and “bank breaking” issue. Because there is no magic physician list for every geography, I realized that providing a better understanding of the landscape and information available to navigate professionals, health insurance, and other costs can be an important starting point for any mold sick patient.
Understanding the following obstacles can save time, money, and human costs.
Obstacle #1: Recognizing That Family Physicians May Not be Trained to Treat for mold
There is no Environmental illness Internship in Medical Schools Today
There are distinct challenges for traditional western medicine physicians to diagnose mold illness:
- Diagnosing mold illness can be a diagnosis of exclusion for a general practitioner; meaning physicians might explore mold after they have failed to reach a diagnosis of other common illnesses.
- The symptoms of mold and mycotoxin exposure are similar to and mimic many other chronic diseases.
- Other conditions can develop as a result of mold exposure leading to co-morbid diseases. Physicians may pursue the other conditions without considering mold as the issue.
- Traditional Western Medicine training does not address environmental illness, especially mold. In fact, many physicians may not understand or even brashly deny the existence of mold sickness.
- Because physicians have little time allocated to patients, it is common for them to avoid any questions about the home or water damage history. This can make treatment impossible. Every expert on mold emphasizes the need to either get out of the home or have it properly remediated. Clean air is essential to getting better. The body’s metabolism is the only means to remove mold and toxins from the body. All treatment consists of optimizing the body’s health to excrete the toxins. Continuous breathing of mold spores or toxins will continuously attack the immune system. This is especially important when you sleep, asthis is the only time your glymphatic system removes toxins from the brain.
Obstacle #2: Physician Diagnostics for Mold
Physicians are accustomed to diagnostic panels when diagnosing disease. Normal blood work can range from a single diagnostic to several broad panels. The cost of this ranges from $100 – $3000 depending on the symptoms and physician. These diagnostics may offer little to no evidence of mold exposure. It is common, but not assumed that the physician will order an allergy blood testing (IgG, IgM, and IgA, IgE) to determine if the patient has antibodies to allergens. This provides little information regarding mold illness vs allergic reactions. Thus, these are the “start-up” costs when seeing a traditionally trained M.D. In the end, it is common for patients to be referred to a specialist.
Once referred to a specialist, depending on the specialist, an entirely new diagnostic process consisting of blood work, costly imaging (X-ray, CT, MRI, skin prick tests, and questionnaires to determine behavioral or mental conditions.). The cost of these tests can be in the thousands.
If the physician suspects mold, there are a series of blood tests that may be ordered that specifically provide circumstantial clues that mold is causing the problem. There are several of these tests that are not necessarily conclusive. It is also important to note that they may or may not be reimbursed by health insurance. It also must be recognized that all positive results will require re-testing to determine if any therapy is working. These include:
- Urine test for mold toxins. These tests must be sent to labs for special analysis. The cost ranges from $400-700 per test, depending on the lab selected. Since mold is often inhaled, the highest concentration of mold and mycotoxins can be in the sinus tissues. This is problematic because sinuses have direct access to the blood brain barrier, cause debilitating symptoms like brain fog, memory issues, headaches, and chronic sinusitis; all without entering the bloodstream and being metabolized. Urine tests will not likely capture these neurotoxins.
- marCons for bacterial sinus infections. This costs approximately $85 and are unlikely to be covered by insurance.
- HLA-DR testing. This test determines whether a person has the genes that make one susceptible to mold illness. Approximately 25% of the populations test positive, meaning that their immune system may have trouble identifying and metabolizing mold from their body) The costs range from $300-400 and may not be covered by insurance.
- Other blood panels that may be ordered include full thyroid and hormonal labs, Vitamin D deficiency, and Iodine deficiency. These tests are normally incremental in additional diagnostic costs.
- Lyme disease testing. Cost is approximately $200. These tests are fairly inaccurate for early detection. The become much more accurate, 87-97%, accurate if it spreads to neurological system or if patient develops Lyme arthritis. This does not include testing for possible co-infections.
- Small Intestine Bacterial Overgrowth (SIBO). Cost is approximately $200.
- Candida testing. Since Candida overgrowth can often be determined by examination and immunoglobulin testing, they may not be necessary. Doctors may order a Candida stool test by PCR which cost approximately $400.
- Other tests for heavy metals or other potential causes for illness.
Obstacle #3: Out of Pocket Costs to Patients and Insurance
Even with the best of insurances, it is important to note that a long and costly journey seeing numerous physicians, diagnostics, and treatments will impact any person’s financial situation. (This does not account for the potential inability of a patient to work and care for themselves.) It is important that patients pay close attention to their insurance policies. These are a few topics to pay special attention to.
- Many insurances can carry deductibles up to $6000. This means that the first $6000 in spending come out of the patient’s pocket before insurance kicks in. These deductible payments can include or exclude pharmaceutical medicine. Pharmaceuticals can have their own deductibles. It is important to note that many treatments for environmental medicine may not count toward the deductible.
- Out-of-network Medical Practitioners. Most insurances have a list of physicians that are under contract with them within the state. Any other physician, in or out of town , may or may not qualify for out of network coverage. Out of network coverage usually reimburses physicians for a significantly higher amount since they are not under contract with the physician; and patients are responsible for a larger portion of the bill. 50% is a common coinsurance amount for out of network.
- Copays and Co-insurance. These are the portions of the medical bill the patient is responsible for after insurance pays their part. They range from 10% (platinum) down to 60% (bronze). Because of the exorbitant prices for healthcare, these can be overwhelming. (In some cases, physicians have “informally” forgiven copays or coinsurance if reimbursement is satisfactory. This practice is a violation of AMA guidelines and may constitute insurance fraud by the physician. It is clearly fraudulent to use that information to sell a patient on their services. If this occurs with Medicare, Medicaid, or other government subsidized insurance, physicians can be considered to be in violation of anti-kickback laws and subject to criminal prosecution.) I always suggest avoiding these physicians.
- Out-of-pocket Maximum. At this level, insurances will pick up the remaining medical bills. These totals can amount to $5000-$7000.
- Medicare also has limits and patients eventually become responsible for payment at reduced rates over time.
Obstacle #4: Shoemaker Protocol
Dr. Ritchie Shoemaker has developed a step by step protocol derived from research he has conducted. To receive this treatment, a physician must be certified to administer his protocol and pay all fees to Shoemaker. This body of research has been challenged by many reputable mold experts and can be very costly. This treatment must be administered by a Shoemaker physician and is rigid in diagnostic testing ($1500 for diagnostics panel at each step) and treatments. These tests and individual prices include:
- Vasoactive Intestinal Polypeptide (VIP) Costs approximately $500
- Melanocyte Stimulating Hormone (MCH) Costs approximately $200
- TGF Beta. Costs approximately $65
- Costs approximately $200
- Costs approximately <$100
- Costs approximately <$100
- Costs approximately <$150
- ADH Osmolality. Costs approximately <$100
- MMP-9. Costs approximately <$45
- Costs approximately <$225
Below is a flow diagram with some explanation:
The complexity of this chart is self-explanatory
Below is the order form for all these tests:
The protocol has had some success; but it remains controversial. It is recommended that patients thoroughly research and perform due diligence on this approach prior to any diagnosis and treatment. It can be very expensive with multiple physician visits, blood panels not covered by insurances, and has varied results. Another issue is the rigorous use of cholestyramine or Welchol as binders. These are two of several different binders that should be used. Read more about chemical binders HERE. Dr. Shoemaker has also faced legal issues, had his medical license suspended, and no longer practices medicine. His science is complex without proper validation, even to the most astute physicians and immunologists.
Because of the rigidity of this approach and the significant expense that is normally not covered by health insurance, I consider this an obstacle because there are equally effective approaches by many physicians who treat environmental illness.
Obstacle #5: Mold Testing
If someone suspects mold as their issue for any reason, proper testing and documentation of results in the home can provide a powerful tool to identify and qualify a physician who treats for mold. You can share your results with your physicians. If an office does not consider this as valuable evidence; chances are that the physicians do not treat for mold.
There are numerous means of testing for mold. Many of the approaches used by mold inspectors use tools that estimate the amount of mold in the air. Lab analysis is an important part of any inspection, whether it is DIY or by a professional. Identification of the specific genera in your home provides circumstantial evidence that the specific genera produce mycotoxins as well as clues to where the mold may be coming from.
ImmunoLytics provides gravity mold plates and swabs that can adequately test for mold and mycotoxin producing molds. I always suggest doing more testing in the beginning to adequately sample the entire home. When you consider all of the “rabbit holes” physicians can take in treatment and the exorbitant expense, testing costs are minimal. In addition, even proper treatment for mold and detoxification will be neutralized or rendered ineffective if the source of mold is not identified and remediated. NO MEDICAL TREATMENT WILL WORK IF THE PATIENTS REMAINS IN A MOLDY HOME! Read more about DIY mold inspection of your home HERE.
ImmunoLytics has recently redesigned the mold testing kits to simplify the DIY process with improved packaging, instructions, and process. Read more about it HERE. You can purchase as many mold plates and swabs needed to test every area you suspect for mold.
Many patients try to limit the testing to a few plates. In my experience, the more testing you do, the better the chance you identify the problematic areas on the first try. This cost-effective effort can help you avoid other financial costs in testing, remediation, and health care. As stated above, even with the best of insurance, out-of-pocket costs can be extremely high and possibly catastrophic to many families.
After a DIY inspection, mold air testing should be done in crawlspaces, attics, and basements as mold in unfinished living spaces will contaminate the entire home due to the physics of the home. Rooms where families spend significant time including bedrooms, living areas, laundry area, TV rooms must be tested. I also recommend swab testing for any visible mold on walls, windowsills, in and around HVAC systems, HVAC filters, water heaters, any visible leaks that cause water damage to drywall or wood, and below carpets and wall-paper.
After a thorough testing of the home, you may want to re-test after cleaning, fogging, or remediation. You can purchase individual plates from ImmunoLytics for $3.00. These follow-up tests can be used for visual testing. If, after the incubation period, the tests are positive, you can send them into ImmunoLytics for lab analysis. Visual plates 8 packs, 3 swab kits, or 6 Plate Kits can also be purchased on Amazon Prime. ImmunoLytics also has excellent customer service and can schedule a call with an expert to provide advice on testing. Call 505.217.0339.
Lab Testing is also very useful in providing irrefutable evidence to landlords or business owners. Having factual evidence is more likely to impact owner behavior in addressing safety issues that may be costly to repair.
Immediate Solution: Cold and Hot Fogging
(Note: this suggestion is my recommendation and may not be consistent with some mold professionals or physicians. I am not a physician or mold remediator; however, I am suggesting an all-natural and safe “band-aid” solution so that you can feel better immediately. This, in itself, is a scientific diagnostic. If after fogging, you feel better, you know mold is the likely issue! This is probably the most conclusive diagnostic when compared to a battery of expensive blood diagnostic tests that may or may not be specific to mold.)
If you suspect or know mold is an issue, I often suggest fogging the home immediately, even prior to going to the physician. Hot fogging with Bio-Balance fogging solutions is very effective. Read more about Bio-Balance fogging solutions HERE. The Bio-Balance Fogging Kit will effectively fog up to 1000 sq. ft. such as apartments. For larger jobs or to fog attics, crawlspaces, etc., the Bio-Balance Deluxe Package can fog up to 4000 sq. ft. at a time. Hot fogging is effective in reducing the fungal air and surface mold counts to minute amounts. Fogging can be done in a day.
The fog will fill your home and HVAC systems completely, reaching the air and exposed surface of all of your belongings. The all-natural botanical blend is safe for children, pets, and will not leave a residue on furnishings. You can always call Bio-Balance for an expert advice at (505) 400-8891.
For those who may not have the ambition at this time, cold fogging with the Bio-Balance Maintenance Mister will also reduce mold air counts sufficiently to improve your air quality and feel better. It is effective in reaching hard to get to places and fogging internal furnishings. It is less effective than hot fogging in HVAC systems.
Fogging does not replace the need to identify the source of mold or moisture problem and fix it. It will provide a temporary solution that will last for weeks, depending on the mold source. Since mold takes a while to reproduce and get a “foot-hold” to where it can spread spores, this is an adequate solution for apartment dwellers or renters where mold sick patients are not empowered to fix an issue immediately and depend on landlords.
These suggestions are always accompanied with a suggestion to use a HEPA vacuum on fabrics and carpeting, and wet-wipe/mop all hard surfaces. You can purchase a less expensive “old school” upright bagged vacuum with HEPA bags or a HEPA Cannister Vacuum. Read more about the critical importance of vacuuming mold debris HERE.
If you have a history of mold sensitivity, or suspect mold is causing your illness, identifying the factual issues about your environment can lead you to a significantly lower cost path to solutions and wellness. Even with health insurance, getting treatment for mold is a painful, expensive, trial-and-error process. Patients experience several hardships that impact the entire family. Read more about “7 Medical Consequences and 4 unique Hardships Endured by Mold Sensitive Patients.”.
Because of the complexity of mold illness and limited awareness, it is important to understand the landscape of physicians, mold remediation professionals, and the various detours and dead ends that are financially crippling. I hope this article provides important information for any mold sensitive patient and encourages further research. Since medicine can take decades to adopt new treatments, gathering information is critical for any patient or their family. Addressing potential unnecessary costs will help patients navigate this complex minefield.
Finally, try visiting the International Society of Environmentally Acquired Illness (https://iseai.org/find-a-professional/) or googling “Environmental illness physician and your local city” to get names of physicians who treat this ailment. Having a clear understanding of what will occur, costs, factual mold evidence, health insurance policy, and things to do at home will save time and money as well as provide a path to wellness.
I welcome any personal stories or question. Please comment on the article.