Diagnosing and Managing Mold Exposure

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This article is reproduced with kind permission from the Hunter-Hopkins website (DrLapp.com) © 2015 Hunter-Hopkins Center, PA. All rights reserved.

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Could mold exposure be causing or perpetuating CFS/ME/SEID?!

A history of mold exposure is not uncommon in persons with CFS/ME or fibromyalgia, but difficult to diagnose and treat. Could it be that persistent mold exposure triggers CFS/ME or perpetuates the disorder? Lisa Petrison recovered from her mold exposures and now researches the disorder and advises others on how to handle this difficult illness.

Petrison is conducting a survey of individuals affected by mold exposure, which she recently shared with me. As of August 2015, 146 individuals had responded, and she has tabulated data on 75 of those. So far, half the respondents have been severely affected (that is, housebound or bedridden) with classic CFS/ME/SEID symptoms. The survey is not complete yet, but several points are apropos to readers of this newsletter and are worth sharing.

The majority (83%) of respondents have been female. The top symptoms overlap closely with CFS/ME/SEID, including:

  • Low energy and exertional intolerance

  • Cognitive problems

  • Disturbed or non-restorative sleep

  • Flu-like symptoms or “generally feeling terrible”

  • Mood disturbance

  • Gastrointestinal issues

  • Body pain

  • Headaches

  • Problems with prolonged sitting or standing

  • Chemical and food sensitivities

A small number of individuals have also reported visual problems, seizure activity, motor issues (weakness, incoordination, tremor or tic), and rashes.

Making and confirming a diagnosis remains difficult. Ninety percent of respondents reported that their own reactions to mold most accurately determined an exposure to mold toxins. Some relied on environmental mold testing (ERMI or Environmental Relative Moldiness Index), but about 25% of these tests were normal. There are no medical lab tests that are accurate diagnostic markers for mold exposure or toxicity, but researchers believe that low levels of Vasoactive Intestinal Pepetide (VIP) or Melanocyte Stimulating Hormone (MSH) and high levels of complement (C4a) suggest toxic exposure, and TGF Beta-1 may be involved as well.

Treatments are relatively lacking, and significant improvement frequently is not noted before 6 months, sometimes 12-18 months. Participants agreed that they benefited most from “avoidance, avoidance, and more avoidance,” although virtually all admitted this was moderately difficult, and 30% reported total avoidance as monumentally difficult. About one-third took a “mold avoidance sabbatical” by temporarily moving to a new location or a different home – sometimes living in tents or vehicles. About one-fifth remediated their current homes, one-third stopped going to work or school in affected facilities, and two-thirds moved into new homes. Other techniques that seemed to help were:

  • addressing sinus infections

  • eating an organic and/or gluten free diet

  • juicing or a diet high in raw organic produce

  • seeking improved outdoor air quality

Medically, treatment with cholestyramine, B12, folate, magnesium, sweat therapy or detoxification, and coffee enemas were reported most helpful. Surprisingly, air filters did not help much at all.

Clearly the symptoms of mold exposure overlap with the symptoms of CFS/ME/SEID, and mold exposure may even be a trigger for CFS/ME/SEID. I am grateful to Lisa Petrison for bring this information to our attention!

If you have been exposed to mold and done any kind of mold avoidance, consider participating in Petrison’s survey at www.paradigmchange.me/survey.


Dr. Charles Lapp, MD, is director of the Hunter-Hopkins Center in Charlotte, NC, one of the few medical practices in the US specializing in the treatment of ME/CFS and fibromyalgia. 

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