One of the most difficult things about environmentally-triggered and chronic illness is finding a doctor or health care practitioner who has the knowledge and training to help you. There are so many different reasons for this problem, but from my experience the main ones fall under the following explanations:
- Environmental and mold illness symptoms are usually many and diverse, without just one sickness or specific symptom to pinpoint. There usually isn’t one thing “wrong” or main complaint. In my case, I had chronic fatigue, insomnia, anxiety, hormonal and adrenal abnormalities, digestive issues, and severe sinus symptoms. The core issue is that the symptoms of environmental illness mimic symptoms of several diseases of the immune system, metabolism, horemone, even cancer. Furthering this problem is the fact that the current medical model in this country teaches us that, for each symptom, there is a specific doctor that we must go to. When there are so many symptoms, and you default to a primary care doctor, you are then referred to a specialist, who then refers to another specialist and so on. The list grows extensive and the bills add up. Rather than continue down this path of constant doctor’s visits and medical expenses, many people give up without ever finding the source or cause behind ALL of their issues.
- Symptoms of mold illness can be debilitating but are not always completely incapacitating—at least not at the beginning. Thus, the urgency to find treatment or medical care is many times delayed up until the point that you are VERY sick and desperate. For example, if your temperature spikes and you have sharp sinus pain, you may go directly to the doctor for a sinus infection. But if symptoms are more gradual, like not being able to think straight, gaining weight, and feeling fatigued, you may just contribute your failing health to stress or a change in lifestyle. Then, by the time you go to the doctor, your symptom list is extensive, and you are at #1 on this list.
- Our environments (and/or lifestyles) are oftentimes the LAST place both we and our medical doctors look for the cause of sickness. In my opinion, this is changing, but still another way our current medical model of allopathic traditional Western medicine fails us. It has been indoctrinated in us that when we are sick, or have a health problem, we need to go to the doctor and get treated or get a prescription to “fix” the issue and eliminate the symptoms as quickly as possible. There usually is not much thought given to the why behind the symptoms. While this may have worked well in the past and still works well for many acute symptoms and illnesses, it does NOT work for chronic illness, mold illness, Chronic Inflammatory Response Syndrome (CIRS), or autoimmune issues. In fact, pharmaceuticals without lifestyle and environmental changes often make environmentally-triggered symptoms worse or create new symptoms altogether. (One example is migraine headaches. Patients with chronic sinusitis get pressure headaches that trigger migraines. These are debilitating headaches that can make a person severely incapacitated for days. A primary care physician would simply give a migraine medication that costs several hundred dollars for around 8-10 pills that may work sometimes. Interaction is closed. It may never surface that addressing the chronic sinusitis, and the environment would eliminate the cause of the headaches in the first place.)
- When environmental and mold patients do go to the doctor, they are often labelled high maintenance, “thick-medical-chart” hypochondriacs, or even crazy. All of the symptoms, anxiety, and neurological issues caused by the mold exposure can make those going through it seem a bit “off” to others. There is good reason for this. If you are being exposed to mold and mycotoxins on a daily basis, odds are that your brain is not functioning correctly. (To read more on this subject, go to my post on the neurological symptoms and ramifications of mold illness HERE.) This stigma and negative responses to their symptoms perpetuates the issue, and patients just don’t want to seek care for fear of this happening again and again. I speak from experience, because this is exactly what happened to me. At the height of my sickness, I was told that my symptoms were those of post-partum depression, and once I got that under control, the other stuff would go away. I was offered an antidepressant prescription and the name of a good counselor. Meanwhile, my body was in crisis mode from living in mycotoxins. The issue with getting a default diagnosis like depression is that you will endure taking a product that works little more than half the time and causes other side effects. If it doesn’t work after weeks or months or not tolerated, they physician just continues by trial and error until one “seems” to work. Mold-sick patients get depressed and the medication may be warranted; however, depression is a result of their symptoms, not the cause.
- If and when it is suspected that there is mold in an indoor environment causing sickness, most people do not know where to begin. The focus becomes the mold and the environment, which it should be at the outset. If the source of the mold is not eliminated from your environment, your body will continue to take in mold spores that keep your immune system from operating normally; however, even after you move or fix your environment, you still have to address the mold toxins in your body, or you won’t get well. Then there are those, like me, who find the mold as a result of the sickness. Either way, there is not much literature on the subject, whether it be mold in your body or environment, and most medical doctors do not have enough experience with mold to spot patients who are suffering. Also, what little information exists is confusing, conflicting, and from what I have found, just plain wrong.
- Many people don’t consider naturopathic doctors or holistic practitioners who treat mold illness as options. The reasons are usually based on assumptions that alternative modes of medical care are cost prohibitive, because many treatments and methodologies are not covered by typical insurance, and because people don’t really understand what they do. It is important to look at your benefits to see if you have out of network coverage and/or allowances for integrative medicine. Then, you can determine whether a specialist who encounters mold often may be covered. (Note: Allergists, ENT, and GI doctors see fungal infections regularly. Call and check ther websites for information that they focus on fungal infections. These kinds of doctors are usually covered by most plans with a referral. ) The idea of paying out-of-pocket scares people, because we are so used to the insurance model of care. While, the ground covered in one visit to someone who knows mold illness could save money wasted on medications and endless doctors’ visits over time, the thought of spending $180-$350 for a first assessment (the market rate for an initial visit with a naturopathic doctor) is too overwhelming for many people to even consider. While, I cannot dispute that this type of care is expensive out-of-the-gate, there are ways, such as using an HSA plan and working with the doctor on cash discounts or scaling follow-up visits, to make it more affordable. Some of these offices also offer Care Credit, which pays the doctor immediately for the services, but allows the patient to pay them over time, with very little interest. Just ask. I also know from experience that with a naturopathic doctor or mold illness specialist, like Dr. Williford or Dr. Dennis, for example, your initial visit consists of well over an hour of one-on-one time with a doctor who takes a complete medical history and performs some testing and a physical exam. This is unheard of in the typical medical model with patients scheduled every 15 minutes and as many patients as possible are seen in as little time as possible. Drs like Drs. Dennis and Williford are trained to ask the right questions to determine what your environment may harbor or which bodily systems are affected and how. When you consider Doctors, check out their website and read their bios. When I see that the physician or naturopathic doctor have encountered environmental illness themselves, I feel encouraged that they are trained to identify and understand mold. Many of the most sought out lecturers, clinicians, and thought leaders have experienced this illness first hand. Time with patients and empathy is the result.
I have personally come up against all of the problems I outlined in the previous list. I have also spent enough time addressing my own issues with mold and with my health to have earned enough knowledge from the school of hard knocks and experience to be able to help. I am here to pick you up and to share my experience and what I did for myself and my family to find fantastic doctors and treatments that got us through our mold nightmare.
To that end, I want to teach you how to navigate this niche health space. I want to show you how to look for a doctor, naturopath, or holistic practitioner trained and experienced in treating patients with environmental and/or mold illness. This will include the tools you have at your disposal to help you initially assess if mold is an issue for your health before you spend a lot of money on professional testing or doctors’ visits. All of these things will put your health and health care back into your hands. Taking control is half of the battle. Taking the steps necessary to find the help you need is the other 50%.
To get started, do as much as possible on your own to investigate your symptoms and environment for “mold and environmental clues.” Become familiar with common symptoms and environmental indicators of mold.
FREE or Inexpensive Ways to Figure Out if Mold is Causing Your Symptoms:
Most people are not as lucky as I was in finding a doctor who questioned my environment and environmental exposures when he examined me and saw and heard about my symptoms. So, whatever you can do to investigate this piece of the puzzle at the outset is extremely beneficial. In my opinion, there are three ways to go about doing this, with each building on the other to either point to or eliminate mold as the source of your health problems:
- Take the Free Mold Evaluation on the SinusitisWellness.com website.I wrote a post about this evaluation and a step-by-step guide to it that you can access HERE. This tool will guide you through a simple questionnaire created by Dr. Dennis and used by Dr. Dennis in his office when he first evaluates patients. This questionnaire looks at you, your symptoms, and your environment. At the end of the test, you are given results that indicate whether your symptoms are indicative of mold-related illness or not, and which products are recommended for treatment. Whether or not you take the product recommendations is up to you, but the simplicity of being able to get instant results from a proven assessment designed by a doctor who treats mold patients everyday is invaluable. You can take these results to your primary care doctor to begin the conversation or to ask for a referral to a specialist who treat mold illness. Unless your primary care doctor understands mold illness, I would not recommend asking them to do any testing on you for simple financial reasons (waste), because they will not know what markers to look for or how to best evaluate your results to help you.
- Take the FREE Questionnaire on the Environmental Health Center, Dallas website. It was designed by Dr. Bill Rea. (Read my post that includes information about Dr. Rea HERE.) It will help you to determine if you are suffering from environmental illness. You have to answer 16 questions and include your contact info. Upon submission, a treatment care provider at the center will evaluate your answers and contact you with feedback in an email. You can choose to contact them from there for further help and direction, or just use the information towards finding help near you.
- Test your environment for mold using EC3 Mold Screening Test Kit or Immunolytics Diagnostic Testing Kits.If you want lab results from the get-go, go with the Immunolytics Tests, but if you want the least expensive way of finding out if your indoor environment has mold levels above what is healthy, use the EC3 Kits. Either way, in a very short period of time, you will get unequivocal results and an ANSWER. With that answer, you can seek further professional indoor air quality testing and/or remediation help. With the Immunolytics diagnostic testing, you will also know what types of fungi you are dealing with and what kind of medical issues those particular species are known to cause. You can also share these findings with your doctor to show that mold is present and needs to be taken into account for your symptoms.
- Take a Visual Contrast Sensitivity (VCS) Test. This test is available for FREE online at vsctest.com. You can also choose to make a small donation to receive detailed results analysis and the ability to save and chart your results over time. This test has been reported to be extremely reliable, although not foolproof, in evaluating biotoxin illness. It is an eye test that can be taken on a computer to gauge the user’s ability to see objects clearly, even in situations of low visual contrast. This is an important indicator in mold patients, because most of those suffering from mold or biotoxin illness have an impaired visual contrast function. I have also used this test during treatment and when we moved into our new home to evaluate if things I was doing were working to rid my body of the mold and, in the second case, to make sure I wasn’t being exposed to mold again.
If you “fail” one or more of these tests, I think you should proceed ahead and begin looking for doctor or naturopathic doctor who treat mold and environmental illness. I do not advocate for getting any labs done on your own, like mycotoxin urine or blood screening tests prior to locating a practitioner trained in treating environmental illness, because just like the symptoms, the test results vary from patient to patient, and the doctor must know what to look for in order to correctly interpret the results. Also, the cost of this testing is relatively high, though insurance, in some cases can cover some costs.
Now, you need to start looking for help.
How do I Find a Mold Doctor?
One of the beautiful things about the internet is the easy access we have to information and businesses. Use this to your advantage by going to mold-centered and reputable websites geared toward environmental practitioners. Some I recommend are as follows:
- American College of Environmental Medicine – This site has a search tool that you can use to find environmental medical doctors by geographic location. Some of these doctors are not mold doctors, though. Some are occupational medical doctors. Thus, be sure to take your findings and dig deeper on each practitioner to see if they do, indeed, treat mold illness prior to making any kind of appointment.
- Association of Occupational and Environmental Clinics (AOEC) – This site has a clinic directory by state. You can choose your state to find where and when clinics are held. Each state also lists the names of the doctors involved in the clinic and what specific conditions are diagnosed and treated. Look specifically for mold and environmental illness. These clinics may not be your end point but can start the right conversations with the right kinds of doctors who can help you.
- American Association of Naturopathic Physicians – This site has an online search tool. You can search by your symptoms, state, postal code, and/or city. Only accredited naturopathic doctors are included in the results. Your results will include the doctors’ names and a list of their specialties and conditions they treat. It will also include their website and contact info.
- International Society for Environmentally Acquired Illness – “ISEAI is a nonprofit professional medical society that aims to raise awareness of the environmental causes of inflammatory illnesses and to support the recovery of individuals affected by these illnesses through the integration of clinical practice, education, and research.” The site hosts a searchable database of its approved professional environmental illness and mold remediation members. All medical professionals that are listed must be approved for inclusion by the society’s board members and specialize in environmentally-acquired illness.
- The Institute for Functional Medicine – This site explains functional medicine and has the most comprehensive functional medicine practitioner search tool for practices located in the U.S. on the web. It is easy to navigate and use and includes more “out of the medical box” practitioners, like chiropractors, wellness clinics, and nutritionists.
- Hybrid Rasta Mama – This is another wonderful mold blog. On it, she shares her mold story and journey to health and other tips and tools for healing from mold illness. She has also included a comprehensive list, by state, of mold doctors and practitioners. The list includes many of the best in the business and is worth checking out. You may find someone close to you that knows how to help.
- Inspectapedia – This is a site dedicated to building and environmental inspection. It also offers a comprehensive list, by country and state, of environmental medicine and mold doctors. It is not as extensive as some other sites but does contain helpful information.
If you prefer to do your own research and groundwork, you can just go online and perform a detailed search for terms, like “mold doctor” + city and/or state where you live. You can also try the following terms in addition to your city and state: mold illness, mold illness treatment, environmental illness doctor, naturopathic doctor, environmental illness.
I actually started by searching for my symptoms and my geographic location. Once you get some names, you can start phoning their offices to ask questions about mold and environmental illness and if and how they treat it. I do not recommend that you waste you time with anyone who does not specifically treat mold and biotoxin illness.
If you cannot get search results that include a practitioner near you, start to expand your search to the closest metropolitan city to where you live. There are also many doctors, naturopathic doctors, and healthcare practitioners who will do remote consults, although, most do require you to come in person for the initial visit. If there is a particular doctor or naturopath who you have researched and feel strongly about seeing, call their office. Most professionals in this specialty are familiar with “destination” patients, who travel to see them for help. It helps to call their office and ask questions. A trained staff that treats environmental illness will be able to provide answers to your questions. It is also helpful to prepare for the discussion by taking one of the free evaluations I mentioned earlier. You can use those results during your discussion. As important, you will improve your chances of being seen if you have taken actions to get out of the home to determine if you improve, or to remediate it. Testing, using the EC3 Mold Screening Test Kits and/or fogging to see if you feel better are also helpful. If they are full or are not accepting new patients, they can oftentimes refer you to a colleague skilled in their same protocols and philosophies on patient care who can help. I spent countless hours on the phone and on my computer, but each step led me closer to the help I needed.
If you are comfortable doing so, talk to friends, colleagues, neighbors, etc. about your symptoms. Ask people if they know of naturopaths and mold doctors in your city or state. When people know you are looking for this kind of help, they sometimes can offer you resources that you didn’t know existed in your community. This is actually how I found my current naturopathic doctor here in Memphis. Tennessee is not a state where naturopathic doctors can be licensed or practice the full range scope of their training, thus this type of care is difficult to find here. Talking to a Mom at my children’s school led me to a wonderful practitioner I would’ve never found otherwise.
Other Treatment Options:
A destination treatment center is another option. There are others out there, but the only one I can recommend from my experience is the Environmental Health Center, Dallas. The center offers a safe, mold-, chemical-free environment and comprehensive care. It is definitely a wonderful treatment option for someone needing to immediately evacuate their current environment to get well.
Have I helped and given you some resources? I hope so. You are NOT alone. Take this journey one day at a time. Get to a safe environment or use tools and resources I have included in this blog to make your environment either temporarily or permanently safe. Then, find healthcare professionals to help you. You can recover. Please comment or write to me with any questions you may have. I intend to keep updating and adding to this list, so that you may refer to it whenever you need to.