My Name Is Erik Johnson
Mold at Ground Zero for CFS.
"This seemed to be evolving, before our eyes, from a flu-like illness into something else"
-Dr. Paul Cheney
"... and it seemed to be spreading. Through the local hotel and casino, two area high schools, members of a girls basketball team."
-Dr. Nancy Snyderman
"That's when we wondered, Hey, maybe we ought to call somebody. This is really unusual."
-Dr. Paul Cheney
Paul Cheney and Dan Peterson had tried to believe they were dealing with sporadic, random cases of the malady described in the Annals*. The teacher cluster shattered their fragile equanimity
"It all broke down--began to break down--when the epidemic began to be evident in May," Cheney said, "Because Jones and Straus never talked about an epidemic".
Page 14A Tahoe World, Thursday, Oct 24, 1985
*At Least Six Were Affected* Truckee Teachers Recount "Malady"
By Barbara Barte
Irene Baker, one of about a dozen local teachers who have been diagnosed as having chronic mononucleosis, is exasperated with doctors who dispute the findings of the two Incline Village doctors who have diagnosed 90 local cases.
"I know that I'm sick and I think it's more than coincidence that five teachers who share the same prep period have the same symptoms." Baker said Tuesday.
She spent most of the summer in bed and has not been able to return to her teaching job at Tahoe-Truckee High School this year. Her daughter, Laura, was also sick but has gotten better, she said.
Baker said at least six other Truckee teachers -- Andy Antonucci, Gerry and Janice Kennedy, Karen and Michael Cosgriff, and Jan Showalter – have similar symptoms and the same diagnosis, as do three North Tahoe High School teachers.
Symptoms are "fatigue and killer headaches, sore throat, swollen Lymph nodes, pain in the spleen area and the inability to stand up for more than a short period of time," she said. While she has all the above symptoms and most share the fatigue and bad headaches, not all have the other symptoms. Most were sick all summer, some have returned to teaching full - or only half time, and some are still not able to work.
"Eventually, everyone ended up at Peterson and Cheney's office," she said, referring to Incline Village Drs. Daniel Peterson and Paul Cheney, who have been criticized by other doctors for their chronic-mono diagnoses.
"I don't think Peterson and Cheney are off-base," said Baker, "and what bothers me is that these doctors who are being so critical haven't seen patients with these symptoms, or, if they have, they haven't listened to them.”
"One teacher was told she just had an allergy, and she was so sick. Others are told they're depressed. I had gone to Peterson and recommended him to other teachers.
"Peterson and Cheney believed we were sick. That's why they got all these patients. All of us showed negative on a mono spot test, but not on an E-B panel." (See other story for a description of the controversial Epstein-Barr test)
Since becoming ill, Baker has been finding out what she can about chronic mononucleosis and has learned that there isn't much research on the disease.
She has learned, however, that she is not alone, as someone sent her a list of 200 names from a national support group.
Since reading a paper by a Wisconsin doctor who believes he had a latent mono virus reactivated by the toner in his copy machine, she wonders if two copy machines in the teachers’ room could be at fault.
Cheney says that certain drugs and chemicals can cause latent mono infection to become active again. So can other illnesses, such as cancer and rheumatoid arthritis. In fact, he says, the tiredness associated with these diseases may be due to reactivated mono.
"Phorbol esters used in copy machine toner, the tung oil in many furniture polishes and in certain glues and varnishes and even in some houseplants may reactivate the mono virus that is latent in 90-percent of adults," says Cheney.
While this may be the cause of a few local cases, however, he says he is more inclined to believe a reactivation was triggered by another virus last winter.
"I wouldn't want people to go around unplugging their copy machines," he says. "if it is a common chemical, how come it caused problems this year and not last year? It was more likely a virus."
If reactivation is caused by a chemical, he said, "a lot would depend on the concentration, ventilation, and a lot of other variables."
Cheney agrees with Dr. Gary Holmes, a viral-disease researcher from the Center for Disease Control in Atlanta who is investigating the Tahoe-Truckee cases, that chronic mono is not easily transmitted from person to person.
"Ninety percent of all adults are immune to it because we already have the latent virus," says Cheney, "but I believe that something happened last winter to reactivate the virus in many people."
He says that, because the virus that causes mono is a member of the same family as the herpes virus, a mono treatment is being studied using a new drug for herpes.
"Results are still pending but may be in by mid-winter," says Cheney.
Although the CDC researcher who investigated Cheney and Peterson's findings says he doesn't believe there is an outbreak of chronic mono in the area (see story) and other local doctors also dispute the claims, Cheney says he is convinced at least 90 local people had a mono virus reactivated last winter.
He has seen no new cases since late summer and says "This thing has a beginning, middle, and an end."
Irene Baker and some other locals are still waiting for an end to their illness, though. "It's all I can do to go to the doctor, maybe stop at the store, and get back to bed." she said Tuesday. "I just talked to Karen Cosgriff (who is back teaching half-time) and she was going to go lie down.
Clin Infect Dis. 1994 Jan;18 Suppl 1:S43-8.
Concurrent sick building syndrome and chronic fatigue syndrome: epidemic neuromyasthenia revisited. Chester AC, Levine PH.
Georgetown University Medical Center, Washington, D.C.
Sick building syndrome (SBS) is usually characterized by upper respiratory complaints, headache, and mild fatigue. Chronic fatigue syndrome (CFS) is an illness with defined criteria including extreme fatigue, sore throat, headache, and neurological symptoms. We investigated three apparent outbreaks of SBS and observed another more serious illness (or illnesses), characterized predominantly by severe fatigue, that was noted by 9 (90%) of the 10 teachers who frequently used a single conference room at a high school in Truckee, California; 5 (23%) of the 22 responding teachers in the J wing of a high school in Elk Grove, California; and 9 (10%) of the 93 responding workers from an office building in Washington, D.C. In those individuals with severe fatigue, symptoms of mucous membrane irritation that are characteristic of SBS were noted but also noted were neurological complaints not typical of SBS but quite characteristic of CFS. We conclude that CFS is often associated with SBS.
PMID: 8148452 [PubMed - indexed for MEDLINE]
My name is Erik Johnson. I'm a survivor of the 1985 Lake Tahoe "mystery Illness" and here is how I got involved in the creation of the new syndrome called CFS.
Dr. Cheney called me into his office, "How would you like to be a prototype for a syndrome?"
It didn't take more than a moment's reflection to say no. I didn't think this was a good idea. I told Dr. Cheney that thanks to mold avoidance, including creating a mold free camper as a refuge, I had already improved to the point that I was no longer a good representative of the unexplained illness.
But there was something else that stopped me. I was a Cheney patient in Fall of 1984, from before the mysterious flu had struck town, and I knew that this flu-like illness was what the CDC had been called for. I didn't want to complicate matters by tossing in my prior mold complaints.
I told Dr. Cheney to get someone else, there must be many people who would serve better, and I didn't think it would be ethical of me to act as a representative for the Raggedy Ann syndrome, knowing I had something other than what they wished to study.
Alarmed, Dr. Cheney stood up and said "You have to. You are EBV negative, are one of the original cohort and have all the right immune parameters." He assured me that my level of recovery wasn't important. The immune abnormalities he and Dr. Peterson had uncovered were the only things that mattered.
I warned Dr. Cheney several times that my situation could cause problems, but he was adamant that the mold didn't matter, and I could go ahead, reiterating that my participation was vital, "No one else can take your place."
I thought it over and realized that all the places where clusters of illness had occurred were in the same moldy buildings that had made me ill, so actually my mold problems were not completely irrelevant to the unknown illness. There was a way for me to maintain the focus of why the new syndrome was being coined. All I had to do was point at the flu like illness and its associated evidence as "being CFS", and keep the mold illness as a possible contributor that may need to be factored in if research showed this was warranted.
The more I thought about it, the more I realized that rather than skewing the dataset, it would actually bias the outcome for me to have refused, since there WAS a mold component to the way this illness had clusters of people in sick buildings.
Could it be possible that mold exposure was a significant factor in other people's illness as well?
We have had a few more minor outbreaks since then, but nothing like the huge "Mystery Illness" incident that sickened thousands of people.
This strange illness is full of bizarre contradictions. At times spreading like wildfire through groups of closely associated people, yet with people from these very groups seemingly unable to transmit it to anyone else.
I saw a pattern immediately; A strange "exception to the rules" in which the flu-like illness turned from noninfectious to wildly contagious. The contagion occurred when people in the early "shedding phase" of viral illness were all in the presence of moldy buildings. Only then, was the disease easily passed from one to another.
The Truckee "teachers lounge" incident that caused Dr. Peterson to call the CDC, starting the path to the new syndrome, is a very well described example of this process.
I contacted the teachers at Elk Grove, and they found the very same "toxic mold" that we in Truckee did: Stachybotrys Chartarum.
Dr. Cheney stated: "This seemed to be evolving, before our eyes, from a flu-like illness into something else."
Wouldn't it make sense to consider that the flu-like illness had unveiled Chronic Inflammatory Response Syndrome, and thereafter, the real driving force in the illness is the ubiquitous toxic mold in so many buildings?
The clues are right there. Simply ask yourself, "If this were a purely viral illness, then why did the one teacher who made the effort to get out of that lounge manage to avoid becoming ill?"
Years later, I saw this interesting clue. "Dr. Byron Hyde reported in 1989 that, "To my knowledge, there are only five diseases that have a pathological low sedimentation level: Myalgic Encephalomyelitis, sickle-cell anemia, hereditary sperocytosis, hyper-gammaglobulinemia and hyper-fibrogenemia."
Dr. Peterson had told me, "Your erythrocyte sedimentation rate is zero. Most doctors are taught that the lower, the better. But a ZERO sed rate is TOO LOW, this is an abnormality." Dr. Cheney has been saying for years that his CFS patients consistently have such a low erythrocyte sedimentation rate.
Looking back in my medical records from Dr. Cheney, much to my amazement, I saw that I HAD a zero sed rate. But this was before I got the weird flu. Indeed, it was even before the outbreak began.
I had one of the classic abnormalities of Myalgic Encephalomyelitis back when so far as I knew, I was just reactive to mold, and had NONE of the signs or symptoms of ME.
By chance, I appear to have been caught in a precursor state before the virus that went through Lake Tahoe made my illness apparent.
So imagine my shock when Dr. Ritchie Shoemaker told me that his biotoxin patients have a low sed rate.
If this is a consistent finding in mold illness, it appears that we need to consider that by failing to examine the circumstances where the CFS clusters arose, the entire CFS research community chased viruses down a dead end alley, and missed the chance to identify a common denominator hiding in plain sight.