Chronic Fatigue Syndrome – Healing Your Frustrations!

Have you ever been told it’s all in your head? I mean, did you ever have the feeling that when you speak with your doctor, the look on his or her face is saying “you must be making this all up”? 

In my Tampa holistic and functional medicine practice, I regularly see patients who have many chronic symptoms. Symptoms that on the surface are seemingly unrelated and bizarrely appear to have no known cause. Many of these patients have been diagnosed as Chronic Fatigue Syndrome or exhibit multiple symptoms in multiple systems of the body. It appears as if they have some type of autoimmune condition(s). Although, some have been diagnosed with a specific autoimmune condition, many elude diagnosis. The doctor often suggesting “let’s retest in a few months or a year, it looks autoimmune, but I don’t see anything in your labs yet”. 

Case Study 

A forty year old female administrator recently presented with complaints of memory loss, lack of motivation and anxiety, all brain based symptoms, ok that fits. She explained to me that she has low sex drive, stomach pain, rashes that come and go and is always tired. When, I let her continue to state her concerns, “I also have cramps in my legs and I wake up stiff, my joints hurt, and at times I find it difficult to breathe. I sleep well enough but wake up tired.” There was more! “I have tingling in my hands and I feel weak”. This is suddenly sounding way more complex! 

The patient went on to tell me about her experience seeing other doctors. Because she had a chronic cough as well, she had been provided multiple antibiotics over the last year and one doctor tried her on proton pump inhibitors for reflux and sinus congestion that seemed to be related. Both treatments helped for a few weeks, only to have the problems return. She was also taking an antidepressant that has helped somewhat but clearly not addressing the underlying problem. 

What’s being missed here? Why can’t this patient get an accurate diagnosis and treatment to resolve her many concerns? What we found was simple and yet profound. The patient was experiencing a problem related to her home environment. I asked her to run a test in her home, collecting dust that was sent to a lab to identify mold in the environment. We found elevated levels of toxic mold. She had no visible areas of mold, nor water damage that was obvious in the home. Once we had the house inspected by an environmental professional, it was clear the air conditioning unit was the source of the problem. Once we had that cleaned up, she was ready for treatment and responded nicely. Within a few short months her energy was 80% improved, cough, cramps, weakness, joints, rashes, all resolved. Could we have accomplished this if we did not find the mold hidden in her dust? 100% no. 

What this patient was experiencing was an immune system issue that was either being caused by or exacerbated by exposure to mold toxins. This is an environmental issue that is nearly always missed in the current healthcare system, leaving patients feeling sick, tired and frustrated with their doctors. These types of patients will often find their way to my office. Unfortunately, the longer the problem has gone unresolved the more challenging it can be to correct. The good news is, when the right steps are taken, the patient will improve and can ultimately heal. 

Time and Education is Essential to Healing Chronic Health Problems

In this blog post I will explain how we go about establishing a diagnosis to enable those with environmental illness to discover the cause and start to resolve the problem. Please understand there is more to environmental illness than water damaged buildings, HVAC problems and mold. However, this is the problem in the majority of cases. Fish kills, eating reef fish with ciguatera, heavy metals, drinking water, lyme disease, spider bites, are also culprits in environmental illness and will not be discussed here. 

Why do you keep hearing“ it’s all in your head” or “ your labs are normal”.  Most doctor visits are too short. This is simply due to restrictions placed on the doctor by your insurance carrier. Ten to fifteen minutes with your doctor every few months, or twenty minutes with a specialist who was not educated enough to ask you about your environment is doomed to produce weak outcomes. 

I made the same mistake in practice for many years. Until I became fully aware of the environmental pressures people face at home and work. Once you see it, you cannot unsee it. Once you see patients getting better you become insistent on discovering the cause. Asking over and over, trying to find the culprit in the patient’s environment. After all, these are patients who have tried diets and exercise, multiple medical visits and yet still suffer. There has to be a reason! 

I will not repeat this mistake. The patient in this story had chronic fatigue, she was always tired and did not respond well to exercise. 

To properly identify a true case of chronic fatigue caused by exposure to a water damaged building or what is known as a Chronic Inflammatory Response Syndrome – Water Damaged building (CIRS-WDB) it takes knowing what to ask and then listening . 

It may only take 15-20 minutes in a consult to decide if CIRS-WDB should be considered as a diagnosis for the chronically fatigued and forgetful patient. However, it takes roughly three hours or more time with the doctor to fully establish your diagnosis and begin treatment. This is because we must rule out everything else that could possibly be causing your symptoms, review previous tests taken with other providers, and order and review our own tests specifically associated associated with CIRS-WDB. 

A Few Things to Consider

There is a good deal of education that is required for the person or family living in a water damaged building to take action and recover their lives. There are many variables at play. 

Here are a few examples of what may need to happen in a home and the decisions that are undertaken by the family or individual in that home. 

1. Do you own or rent? This can impact decisions as to moving or repairing. 
2. Who is going to find the problems in the house? Can I do it myself? Can I trust the inspector? 
3. What is the scope of work that needs to be done to make the home safe again for the struggling patient? Who can I trust to do the work properly? 
4. How will I know the home is safe again? 
5. Will I need to move? Change jobs? 

Here are a few examples of the questions that need to be asked by the person who has become ill from living or working in a water damaged home or building and is struggling with chronic health concerns, brain fog and fatigue being the most common unrelenting symptoms. 

1. What labs are needed to diagnose and monitor the chronic illness that has resulted from exposure? 
2. What do the treatments entail to help me heal from exposure to a water damaged home or building? 
3. Can I heal from this? 
4. What is the impact to my children? Could this be causing some of their seemingly minor or major health concerns? 

Finding Answers to Complex Health Concerns

When I see patients with complex health concerns I break it down into three steps. 

1. Is this problem being caused or exacerbated by an environmental exposure? While not every patient will have this problem, it is imperative to ask the right questions if the symptoms match. Think of it this way, it would be remiss to ignore environment as a cause if a patient has been to a variety of doctors who have been unable to form any solid conclusions. Having twenty years of experience in holistic medicine I can assure you the number of patients who seek out my care with environmental issues that are unknown to them are far greater than one might expect. (hint: this is why they are not getting better) You can find additional information regarding Chronic Inflammatory Response Syndrome as you continue to read this post and at the following post, Mold, It’s Usually NOT Allergy – It’s A Biotoxin Illness Named CIRS.
2. What tests can be run to confirm diagnosis and find the cause? In the paragraphs below this will be further explained. What patients should understand is that testing to confirm diagnosis of CIRS is available, and in some cases completely necessary. In simpler non progressive cases or due to financial restraints, tests can be minimized so long as the patient is responding well to treatment.  Treatment for environmental exposure always includes removal from or correction of exposure source. In some cases it’s a simple as air filtration. In others it requires a deep cleaning of the HVAC system or the entire home. In more complex situations, remediation is necessary along with removal of water damaged building materials. Each case is unique. Each patient will require their own unique plan of action, dictated by the circumstances, i.e extent of health problems, water damage, finances, spousal support, and personal resources. This is not a minor undertaking, but it is doable and necessary.
3. I start treatment while coming up with a plan for each patient and  family to determine what  needs to be done in the short term and long term to regain health. Treatment may include the use of binders to soak up mold toxins that are traveling through the body causing illness, establishing health dietary protocols to strengthen the body, using a variety of supplements to handle ongoing symptoms and increase energy, and running diagnostic testing to further the treatment plan. Ultimately using peptides if required to reset the immune and endocrine system and restore health can be a final step. The treatment must go in the correct sequence and is determined as the diagnosis unfolds. 

How are Patients Diagnosed with Chronic Inflammatory Response due to Environmental Exposure 

CIRS is a multi-system, multi-symptom Illness that is caused by exposure to a one or more biotoxins. While there are numerous potential causes for CIRS by far the most common is exposure to a water damaged building, be it a school, workplace and commonly home.

Water intrusion may be obvious or hidden problems can and often do exist. Especially, when we consider the constant use of HVAC systems and the interplay with humidity and temperature here in Tampa, it’s no surprise that this is an ongoing issue for many people locally.

Most people understand that mold can grow given the proper conditions. There are three important points that need consideration for those who are not feeling well and those who are treating them.

1. Mold and moisture are not always visible and more likely to be hidden in a home or building. However, hidden mold makes its way into the air and ultimately exposes those breathing it. 
2. When we have a water damaged home or building it’s not just the mold that’s the problem! Mold is just one ingredient in the “toxic soup” found when organic matter starts to decay. The “toxic soup” consists of a wide variety of inflammagens in the form of VOCs (volatile organic compounds ), endotoxins, beta glucans, actinomycetes , bacteria, and viruses. All of these mix together and create a potent burden on a person’s immune system.
3. The amount of damage in the home and the dose of “toxic soup” is not as relevant as the person who is breathing it . A subset of people are dramatically more sensitive to the contents of the building and even when they eventually get out of exposure will remain chronically sick and inflamed until treated.

This lack of understanding by the patient suffering and the medical professional has left many people feeling tired, depressed, breathing poorly, anxious and just plain miserable. Common diagnosis associated with CIRS include: 

• Chronic Fatigue Syndrome
• Fibromyalgia
• Leaky gut
• SIBO (small intestinal bacterial overgrowth) 
• Asthma
• Sinusitis
• Somatization (doctor saying it’s in your head) 
• Pulmonary Hypertension 
• In more extreme cases Multiple Sclerosis, Dementia/ Alztheimer’s 

The Diagnosis of CIRS is Made Using a Variety of Modalities 

To be clear, not all patients will require this aggressive testing protocol. Some will. Many can go through steps 1-5 and find recovery. The key is aggressive follow through with the treatment protocols and the removal from exposure. 

1. Visual Contrast Testing is an inexpensive and reliable method to show reduced oxygen in the capillary beds of the optic nerve extending to the brain. You can take this test online at survivingmold.com for fifteen dollars. A negative test does not rule out CIRS. A positive test can help confirm diagnosis and monitor treatment. 
2. Symptom survey. When you fill out the functional medicine analysis online Functional Medicine Analysis, this will help to identify the symptoms related to CIRS and can be reviewed at your consultation. 
3. Previous history of exposure can help to paint the diagnosis. Current exposures can be tested for. I recommend using envirobiomics.com for testing. Start with ERMI, test number 1. Your home or work test can be reviewed during consultation as well. 
4. Blood testing for MMP9, C4a, TGFB1, MSH, HLA DR, Vitamin D, Hormones, Cortisol, ACTH, Gliadin Antibodies, VEGF and many more further establish the diagnosis. 
5. Response to treatment. When a patient starts treatment the diagnosis of CIRS is further confirmed. In other words, the expectation is that you get better. If you are not, then it’s likely this is not the problem or the cause of the environmental issue is still present. 
6. For those with memory deficits, brain fog, concentration problems or neurological issues, Brain MRI with NeuroQuant only available currently in one Tampa MRI center can measure changes in the size of various important brain structures due to inflammation or atrophy. This further identifies the damage created by chronic brain inflammation that can be due to exposure and has been shown in clinical studies to be corrected using peptides and sequential treatment with binders. 
7. Nasal Swab tests for hidden colonization of bacteria – establishes breakdown of immune system and formation of biofilms – only provided by selected labs- generally not associated with insurance. The cost of this test is a few hundred dollars and can make a world of difference in sinuses and brain fog once treated. 
8. Echo stress testing for measurement of pulmonary hypertension – in progressed cases this can be a necessary step to identify the cause of abnormal breathing, swelling and establish a rationale for ongoing treatment with healing peptides, namely Vasoactive Intestinal Peptide. 
9. VO2 max testing to establish a lack of oxygen utilization contributing to fatigue. 
10. Urine mycotoxin testing is used, although not completely reliable or well established in medical literature. Some doctors and labs argue that if interpreted with caution it can be helpful. 

I hope the above information has been helpful. It’s not in your head!! 

Now you know more about CIRS than most medical professionals. If you would like to be seen either in my office or via phone consultation please schedule an appointment today.