By Neil Nathan MD
Dr. Lawrence Klapow discovered a “new” roundworm, or nematode, approximately 15 years ago. As with many ground-breaking discoveries, the scientific community has been slow to accept or embrace his findings, despite the fact that he was able to complete a double-blinded study in which patients with Chronic Fatigue Syndrome were found to harbor this nematode in a surprisingly high percentage of cases. To be more specific, of 40 patients with Chronic Fatigue Syndrome, Varestrongylus klapowii (which we will now refer to as Vk) was found in over 60% of them, while not found in any of 20 controls.
This alone should stimulate researchers to delve into this area with great excitement. Unfortunately, this has not yet occurred.
While describing his findings to us at a GMA staff meeting several months ago, Dr. Klapow reminded us that the Vk worm is similar to several other nematodes that are capable of making an enzyme called acetylcholinesterase. Dr. Gordon and I looked over at each other at that moment, simultaneously struck by the possibility that this would explain one of the unusual phenomena faced by patients with Multiple Chemical Sensitivities (MCS)—–namely, the rapidity with which those patients react to chemicals or scents that set off their symptoms.
Let me explain. When a patient with MCS is exposed to an offending chemical, or scent, they will usually react almost instantly. This means that within seconds of exposure, they will experience extreme fatigue, cognitive impairment, or neurological events (spasms, tics, dystonias, even seizure-like activity). What has made this difficult to understand is that we have been viewing MCS as a form of allergy; however, no allergic reaction, even an anaphylactic reaction (e.g eating shrimp and breaking into hives or having trouble breathing) occurs that fast. Those reactions take at least 5-15 minutes to manifest. So why do MCS patients react so instantaneously?
Dr. Klapow’s suggestion, once understood, is that perhaps it is this nematode, Vk, which lives primarily in the sinus and lung tissues, that is reacting to these chemical stimuli, producing acetylcholinesterase, which, in effect acts as a kind of neurotoxin or nerve poison, producing these effects.
Intrigued by this idea, we have embarked in a research project to study this possibility.
We started by asking as many of our MCS patients as possible, if they would allow us to wash out their sinuses and allow Dr. Klapow to analyze this material for the presence of the Vk worm. As of this date (7/14/12) we have looked at 33 patients, and 30 of them have clear evidence of the Vk worm. We have looked at 5 controls, only one of whom is positive for the worm.
The first question appears to be answered: do patients with MCS have the Vk worm present? Over 90% of them do. (The three patients who tested negative are being re-tested now as well.)
- Does this worm make acetylcholinesterase? We are working with several research groups and have sent them specimens for analysis. We hope to know this shortly.
- Do MCS patients have an increased level of acetylcholinesterase when exposed to a chemical that we know provokes a response in them? Several of our courageous patients have volunteered to check out this possibility and we are working with several labs to provide this information for us.
- Does this mean that treating a patient who has this worm might help to cure them of MCS? We do not know yet, but we are looking into this possibility with great interest.
We will keep you abreast of this exciting research being done at GMA, as it unfolds.
This study is closed to new participants. If you are interested in possibly being included in the future, send your information to Susan. We are sorry, but most GMA studies, including this one, are open only to GMA patients.