Wednesday, March 21, 2012

Hawaii on Trial

I should have trusted my first response.  Go to Hawaii?  I’d reply incredulously. There’s so much mold there!

There are dry areas.  They even have cactus growing, I’d hear in reply. 

When the winds hit 30 mph and the temperature plummeted to 40, I was willing to put up with anyplace warm.  So off I went.

My first challenge, storing my car and gear, was easily solved by using the RV storage facility at the next place I camped.

Getting to the LA airport for my Hawaiian Airlines flight turned out to be more complicated, as the rental SUV I picked up had new car outgassing which, by 9 pm, was making me nauseous every time I opened the door. I had to take it back to Hertz, try out 4 cars, and finally choose another with 30,000 miles with everything I needed but GPS. Who cared? I had good maps and the route was all interstate highways. Easy! But reality didn’t meet up to my projections. Interstate 10 was undergoing construction and I had to get off in some suburb of Riverside where they didn’t believe in detour signs. I followed the car in front of me as it passed strip malls and gas stations until I found myself at the entrance to CA 650, and I headed south, only to get lost near the airport. Four hours later I took a delicious one hour nap in my car before returning it.

After arriving in Honolulu with a few hours of airplane sleep, I found a condo to rent in Waikiki.  It was right on the beach. I love the beach, having grown up in Margate NJ where I fondly recall every summer day spent building sand castles and jumping the ocean waves. No building sand castles in Waikiki, where the beach is made of very tiny pebbles, and the entrance to the ocean is laden with big pebbles that make walking on gravel barefoot seem like a delight. So I lay out my towel to enjoy sunbathing for 2 minutes before clouds covered the sun and fine pinpricks of drizzle landed on my back. These soft rains seemed to arrive every day as soon as I got onto the beach. And even as I write at the picnic table near the ocean, the rain has started falling again.

Well at least I have a place to stay indoors now. It is a cottage along the coast W of Haleiwa, a neat surfer-hippie town with a great health food store and 3 raw juice bars. The torrential rains that put Oahu and Kauai in the national news started the day we came out to look at this place and continued for the next 6 days and 6 nights. Then we got another 5 days of clouds and drizzle and last week, two full days of sunshine. Hallelujah! I actually felt pretty good on those days and started to like Hawaii. The rest of the time I’ve felt mediocre to awful.

What’s awful? Waking up in the morning with a splitting sinus headache and a queasy stomach. Having a fever, chills, and the urge to release everything inside me through the nearest orifice. Nights without sleep and nights with only a few hours of sleep. Swinging between being tired and being hyper. Unable to clear my head to meditate. Having digestive issues like GERD, burping, and constipation. And of course more fatigue and less tolerance of standing and exercise. But my reactions are less extreme than they were in the desert, and I haven’t declined to where I was in Ohio.  It’s very pretty here, and the warm weather is so much easier to deal with outdoors!!

Here are some pictures, including a few taken a bit up the coast of an Hawaiian monkseal who looked like another rock on the beach until it started moving its flippers.

More pictures on my Facebook album.

We move on tomorrow to Kailua Kona on the big island, an area known to be fairly dry. Whether it’s dry enough to keep the molds in check that stir up my immune system is something I’ll discover. If not, it’s on to Maui and then….the unknown.   


  1. Janis--it's great to hear your update!

    Warning regarding the Kona side of the Big Island:
    ask the locals about the vog, it's apparently been really bad this year.

  2. As you said, I'm also fond of beach, having grown up in Margate NJ where I fondly recall every summer day spent building sand castles and jumping the ocean waves. No building sand castles in Waikiki, where the beach is made of very tiny pebbles, and the entrance to the ocean is laden with big pebbles that make walking on gravel barefoot seem like a delight.

  3. I've never found dry/wet to be a particularly relevant factor with regard to whether I react to environmental molds/biotoxins. The reason for this, I think, is that I don't think that "mold" in general is bad for me. Rather, it's just a few specific toxin-producing species of mold that are the problem.

    My feeling is that this is the case for CFS sufferers in general. Certainly it is true that some people have allergies to all kinds of molds, toxic or non-toxic. These can be regular allergies (triggering watery eyes and sneezing) or more serious allergies (triggering lung issues and other classic anaphylactic symptoms). But those do not create symptoms specific to CFS.

    It's the toxin-producing molds that trigger the CFS symptoms.

    The relevant distinction for the toxin-producing molds seems to be polluted/pristine. I have never been in any place that was really pristine with regard to manmade chemicals that has felt in any way problematic to me with regard to toxic mold, no matter how wet or dry it is. And I've been to some very dry cities that have felt just awful to me, with regard to the kinds of toxic effects that I associate with biotoxins.

    Why biotoxin producers are more problematic in areas with a lot of manmade chemicals (or specific manmade chemicals) is an interesting question. It seems that there is something about the chemicals that are interacting with the microorganisms. Perhaps only certain weird microorganisms are able to grow in toxic muck. Perhaps certain microorganisms are using chemicals as a "food" to create particularly potent toxins. It would be good if scientific research were done to find out.

    So in short -- I would like to suggest that perhaps the problem with Oahu (home of Honolulu) is not that it is "wet" but that it is "polluted."

    From what I've heard, some of the other Hawaiian islands are more pristine. And the positive reports that I've gotten from Hawaii are almost all from more remote, pristine places than from the "civilized" areas.

    I will keep my fingers crossed that one of those works out for you!


    Lisa Petrison, Ph.D.

    lisapetrison at yahoo

  4. Lisa- I think Waikiki is somewhat polluted. There is a lot of traffic and it is downwind of any industry on the island. But Mokuleia seems pretty pristine. It is on the north coast and gets onshore winds, so has really clean air and beaches. It is known as the "country" and there aren't any high-rises and very little traffic.

    Are you not sensitive to molds at all? I didn't have any of the extreme symptoms that Janis experienced for a couple of days, but did have inflamed sinuses and some fatigue. Unlike in some locations, it doesn't feel like I am being poisoned-- it feels like my immune system is on hyper-alert which causes me to react to non-toxic immune irritants.


  5. My experience is that there have been plenty of times when I have smelled mold in an environment but have not been bothered by it. In addition, I have spent time in many natural locations (such as secluded forests in humid areas) that seem to me likely to have a great deal of natural mold, but that felt great to me.

    I therefore would like to suggest that I do not react to all kinds of molds, just to the toxins produced by certain ones.

    However, I have heard of some people at their depth of the illness becoming so reactive that even the mold growing on a lemon becomes bothersome.

I tend to think that this is a secondary reactivity though, and that it should be thought of as in the same category as other secondaries (such as household chemicals, foods, latex or woodsmoke). Eventually with enough avoidance of the primary (toxic molds), that type of reactivity should calm down.

    So I suppose that it could be that you are reacting to ordinary molds in the environment, through the spreading phenomenon.

    However, I would like to posit an alternative explanation: that the places that you’re going to in Oahu are not nearly as pristine as they seem.

    For instance, Lake Tahoe (which in some particular spots is a very bad place for people with CFS) doesn’t seem polluted at all, and it ranks okay in terms of air pollution indices. The chemicals that are problems there (e.g. PBDE’s) aren’t obvious on the surface, but they're still present.

    I went to Oahu once, in 1993. I felt like crap on that whole island, including in the places away from Waikiki/Honolulu where I went to go snorkeling or exploring nature preserves.

    My experience recently is that I never feel anything but great in a pristine place (free of manmade chemicals), and I feel sure that was the case in 1993 as well. I thus believe that island was problematic in terms of chemicals, at least at that time.

The fact that I’ve not heard from any CFS sufferers who have had spontaneous remissions in Oahu makes me more convinced that indeed it’s not a “Feel Great Place” for us.

    Plenty of humid locales are “Feel Great Places” for CFS sufferers though! So again, I just don’t think that “wet/dry” is the most important variable here.

I’ve heard better things about some of the other Hawaiian islands, which to my understanding also are more pristine than the main island. So I am looking forward to hearing your reports from them.

  6. Note that Janis pointed out to me privately that a humid environment might exacerbate a fungal sinus infection. That seems reasonable to me. I'm not speaking to the effects of humidity on individual people -- just suggesting that it does not seem to be a particularly important variable in terms of predicting whether problematic mold toxins are present or absent in the environment.

    1. Interesting comment Lisa. I realized a pattern today. I felt worse when the sky got cloudy and it rained or drizzled in Arkansas, the California desert, New Mexico, Oklahoma where I was camping. Same pattern here - worse on Oahu in condo when weather changed, worse in Mokuleia when weather changed and better on the 3 sunny days, even the day we went into downtown Honolulu. Ditto here in Kailua-Kona, where I felt fabulous the first 2 days, and then got sick for 2 days. Today I woke feeling hugely better, and it is turning out to be a beautiful clear, dry day... Wish I knew what could be triggered by the cloudy weather and rain... Seems more complicated than a mere sinus fungal infection acting up.

    2. Absolutely! Feeling worse when the skies get cloudier and better when things get sunnier is a classic symptom in our phenomenon. So happy to read that you have noticed that happening for you.

      One suspicion here is that molds or other biotoxin producers release their spores when the barometric pressure drops, in the hope that the ensuing rain will allow them to establish new colonies. In addition, since UV light can degrade mycotoxins and other biotoxins, the lack of light during cloudy periods possibly may exacerbate the phenomenon.

      However, if I go to a place that is truly pristine, that "rainy weather exacerbation" does not occur. It's not a matter of how dry/wet the environment is overall either. Pristine humid forests feel good to me no matter what the weather. Most of the rural areas of Kansas and Montana felt great to me just before storms. On the other hand, as you mention, some of the generally driest places (such as deserts of Arizona, NM or California) feel awful at that time.

      My understanding from your descriptions above was that you were suggesting that generally dry locations were better than generally wet ones, not that you were talking about changes in barometric pressure in a particular place.

      Believing that "dry" locations are helpful when pursuing mold avoidance is why so many people reflexively decide to move to Tucson/Phoenix. Considering how sick that all of them (that I've seen) remain once they get there, this doesn't seem to me to be a good strategy.


      Mold spores are primed to release their toxins at times of weather change, when conditions of wind and potential water give spores their best chance for dispersion and survival.

      -Erik (2006, SickBuildings)


      Plumes are much worse during rainy weather.

      Isn't it amazing that people have known for eons that a "blue sky day" is a happy feelgood kind of day, but had no idea why that was?

      High pressure suppresses toxin release.

      Low pressure, as in a prefrontal barometric pressure drop, causes "Times of Release.”

      Now, think about it for a minute.

      You have felt symptom exacerbation before the rain even hit, so you know "The rain ain't it.”

      But what happens before a storm? The pre-frontal pressure drop.

      And you have also felt the situation reverse itself.

      Well, a low-pressure system also causes a shift in wind direction, so I would suspect that the more intense toxin level was unleashed elsewhere, and the Coriolis effect caused the wind to shift around until that area of toxin release had you right in its crosshairs.

      The effect doesn't appear to be the cold, or the rain, but just the shift in pressure and humidity.

      If we had a bunch of Moldies cruising around in MECU's, comparing toxin release, mold zones, escape routes and plume sizes... we could probably work up a decent cohesive working model of what is happening.

      -Erik (2008, CFSU)

  7. So...what's next? Are you going to keep running from the world for the rest of your lives? This isn't normal, and highly suggests an anticipatory EXPECTATION that one will react badly when perhaps it might not happen.

    In many cases, your symptoms could be due to overdoing it, along with the above mentioned NOCEBO effect.

  8. Rebecca,

    Anyone who has been sick with this disease for a number of years has a good sense of what their life would be like without doing avoidance.

    Insofar as they feel that the health gains that they obtain from avoidance are worth the trade-offs involved, I don't think it's anyone else's right to judge them for that.

  9. The nocebo effect can surely come into play, and perhaps it does subconsciously. But I seem to have this undying optimism.:) Every time I go into a new place, I am 'sure' it will work out. And sometimes it does -- for a short while. After checking out 4 Waikiki condos, I settled on one that felt good to be inside. I slept in the bed on and off for the first 3 nights, but eventually, being inside the room started triggering symptoms that went away when I stayed outside. Same thing in our rental apartment in Mokuleia - felt great at first and was happy to be living indoors even though we had no furniture but a kitchen table and two chairs and were sleeping on the floor. Both of us woke terribly congested, and it got worse and worse, almost unbearable, before we finally moved outdoors again.
    So Rebecca, if you have a suggestion of what to do, I would sure appreciate it. Otherwise, for me it is currently a choice of feeling sick indoors(headache, fatigue, orthostatic intolerance, congestion, constipation) or feeling well outdoors with clear head, good energy, and a joyful heart.

    My doctor, Janette Hope MD, says this hypersensitivity is not unusual when very sick people first get away from a moldy environment, and that it goes away (or at least gets less bothersome) as the CNS glutathione levels go up.

  10. I guess the question to answer is what city has the least amount of weather. I remember reading somewhere once that sandiego had the most sunny days during the year.

  11. Sunny days definitely are a good thing, but they don't seem to be the only factor that matters in the Locations Effect. My feeling here is that while sun can help to neutralize toxins, there's only so much it can do.

    I personally have spent a great deal of time in Palm Springs, a sunny place where I routinely run into people who have recovered from CFS "spontaneously." Most of them acknowledge feeling worse, especially in winter, when visiting San Diego (only two hours away).

    Here are a couple of articles suggesting that San Diego does indeed have some of the toxicity problems that seem associated with this illness. Perhaps when the cleanup there is finished, the city will feel better.

    Best, Lisa

  12. What you are failing to realize, Lisa P, is that there are more than quite a few toxic molds that are outdoors such as aspergillus and penicillum species that do indeed emit toxins and can indeed invade sinus cavities and create a toxic factory in your face. So on matter where you go, there it is and it can be exacerbated, made worse, and yes made better by yes, location.

  13. This is a really interesting question, I agree. In terms of what's going on outdoors here, it seems like the possibilities suggested so far are a) that there are toxic molds growing outdoors that are triggering immediate sensitivity reactions upon exposure (as I believe happens as a result of exposure to trichothocene producing Fusarium in farmlands in the Midwest); b) the humidity in the air is causing a sinus infection already present to flare; or c) mold spores in the outdoor air in some places are lodging themselves in the sinuses and causing a new infection.

    It would be interesting to know which of these was happening for Janis, in the different places that she is visiting. I wonder how we could figure it out.

  14. Hi all,
    Yes, this question of why humidity tends to aggravate my condition is quite interesting (except when I experience it, LOL). I found the work of Dr. Dennis to be most interesting. I think I'm going to write a post about this.

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Please add your comments here. If you have a question specific to your own condition, please e-mail me directly at I cannot give medical advice. If you want to suggest a product or therapy you think I should try, please let me know if you have used it, what you used it for, and how it helped you.