Friday, February 11, 2011

Mold and other biotoxin hits in Costa Rica

In this beautiful 'paradise', dangers lurk for those of us with ME/CFS.  I've been here since Tuesday night and have been hit with multiple toxic exposures, the most devastating of which was mold.  Here's my story from arrival until early this morning.

A postscript written at breakfast before posting:  Too bad I didn't bring the cable to download photos on this laptop.  The view is amazing, the blue sky, abundance of greenery, and colorful flowers in bloom are a delight to the eyes.  I think I am now in a safe place at last, and have to wait out the process of recovery with the few tools I have at my disposal.  If I can borrow a cable from someone, I will post them.  It makes up for a lot, although I really didn't mind looking out the window at snow.

I almost didn’t join my family in Costa Rica. For the past 2-3 weeks, once I stopped supplements and started feeling better, I was quite happy to remain at home looking out my window at the snow and ice. But since the vacation had been planned to celebrate my birthday, and since the head cold I came down with 12 days before the trip cleared up enough to travel, I didn’t feel particularly worried about mold and other exposures. I should have been.

The air travel went well. I kept my head clear with guaifenesin and benadryl, putting me to sleep on the first part of the trip, which was flying from Columbus to Baltimore to join up with the family. I put drops of hydrogen peroxide in my ear to equalize the pressure. The next day, the long flights from DC to Miami and then to Costa Rica, also went even better. My head continued to clear and I didn’t need the benadryl or the H202 drops. Things were looking good, and I felt pretty energized when we arrived. The trip had been the part I’d been most worried about for the week preceding the trip due to mucous in my sinuses and ear. Ha!

We had problems with our hotel reservation, or rather with the absence of a pick-up for our prepaid hotel. This meant sitting in the wheelchair for about an hour in a place full of fumes from buses, cars, and shuttle vans. By the time we booked a new place and got taken there, I was feeling pretty rotten. The restaurant associated with the Best Western was Denny’s, and it was just as bad as the Denny’s chain in Ohio and elsewhere, but by now I was ravenously hungry, eating whatever was placed on my plate. I had to take Xanax and Benadryl to sleep, as the fumes had increased my congestion and sent the illness into my chest.

The next day we were transported in a private van to La Fortuna, a town at the foot of the Arenal volcano. The fumes on the road were terrible, and we traveled for almost 3 hours. I was exhausted and congested when we arrived. The lovely of our place at Las Lagos was open and airy and warm. I lay on the sofa for nearly an hour while my mother checked in and checked out the rooms. They were large, clean, and quite lovely. The only thing lacking was a decent lamp for reading in bed. We figured we’d buy a little lamp the next day in town since i didn't intend to be running around to hikes and zip lines with my sister.

As I started to put things away in the room, I smelled mold in one of the cabinets. I checked out the room my mother and sister had taken (the plan had been to give me my own room since I have so much trouble falling asleep, staying asleep, and wake early if someone else is moving around) where there were no mold smells in the cabinets, and settled there. Yet before and after going to the pools, while resting in bed, I felt worse than I’ve felt in a very long time — dizzy, weak, coughing and sniffling, plus a terrible headache unlike anything I’d ever experience with shooting pains through the right temple. I felt better when we went to the hot tubs, which were pretty and not too hot, and the cool pool, and better again when we went to the restaurant, which was outdoors and mold free and very beautiful with waterfalls and flowers landscaped everywhere.

The next morning (Thursday) I had scheduled a master blessing from Trivedi at 7 am. After a solid 7 hours of sleep, not even waking for the bathroom, I got up, showered, and before the blessing started, clarified my intention. I am no longer asking for the enrgy to restore me to health. I am asking instead for the energy to raise my consciousness so that I can make the choices that best serve optimal health and happiness. Amazing what unfolded!

As I lay in bed quietly, feeling the energy move through me, shifting my awareness from soles of my feet up to the top of the head, I lost a hair clip down behind the bed and could not retrieve it. After breakfast, we stopped off to see two open rooms far from the maid’s station, which had been noisy from 7 in the morning on with rolling carts, radios, and other disturbances. I opened the cabinets in those rooms and got three big nosefulls of mold. So we went back to our rooms and before I spent any time inside, I got help from my sister retrieving the hair clip. This operation entailed pulling out the trundle bed and lifting up the mattress. Not only did I get a huge whiff of mold from the trundle bed, but I also saw tons of black mold on the wooden slats under the mattress. I vacated the room and my sister carried all my stuff outside.

Next they took me into the town to check out a new hotel with air conditioning and lots of cross ventilation. The rooms in Los Lagos had been built with tiny screens above the glass windows, no fans —not even in the bathrooms, and no A/C. Of course they were mold collectors. But the well-ventilated rooms also smelled moldy, for they had made the same stupid mistakes in construction and decorating, which was to furnish them with wood cabinets with closed doors.

Now we had a whirlwind of activity. My sister packed up her room while I booked us a car rental and Mom tried to find us a place at the beach on the theory that the beach would be drier. Then we go in the car and drove. And drove. And drove.

The scenery was beautiful. There were fabulous panoramas and wonderful colorful foliage with flowing trees such as bright yellow juvia d’oro, bright orange African purri, wisteria, hibiscus, bouganvilla. When we got close to the beach, just outside Puntarenos, the air got drier and the foliage also looked different. The 4 hour trip took us over 5 hours due to the rarity of road signs and the strange lack of coordination between the numbers on our road map and the numbers on the roads. We asked for directions a lot!

My first whiff of the hotel lobby at Manual Antonio was “Oh no” but thankfully, our rooms were in a different wing, had open slatted dressers, sliding glass doors that opened, and air conditioning. Usually AC makes me ill because it tends to accumulate mold spores. I think this place keeps it on all the time, plus they have fans in the bathrooms, so it smelled dry and clan. I even lifted the mattress and sniffed there. I think the porter Filippe thought I was crazy. Oh well!

The mold hit has charged up my stress hormones. Suddenly I’m always hungry and craving sweets. At home I eat very little, so I’m noticing a huge difference in appetite. I woke at 2:30 am with my heart pounding. I took 1/2 Xanax and started writing. I’m starving now and will have to eat something to get back to sleep.  (this never happened, but sunset was a joy to watch!)

I don’t think I would have discovered the mold at Los Lagos if I hadn’t had the blessing today so I am grateful for that. And, if I hadn’t brought Shoemaker’s new book, Surviving Mold, with me on this trip, I would not have known that staying in a moldy environment could actually set me back for months or years.

I’ve had minimal mold exposures for many years since we cleaned up our basement and redid bathrooms and kitchen down to the wood frames. I’ve learned from Shoemaker and friends on the forums that I need to get ERMI testing to see what molds might still be hanging around in the house. This is the first thing I’ll do when I return.

My big question is, should I try to find a doctor around here and get some choestyramine? Shoemaker says it can pull out the mold toxins that are still floating around in the blood stream after a recent hit. It’s scary to try something new away from home. At the same time, I sure would like to pull those dreadful toxins out of me before they do any more damage to my system.

I know I have the so-called ‘dreaded gene’, something like 11-3-52B, my MSH is tanked (I think it was 3.9, which basically means the hypothalamus has lost the ability to regulate all the hormones), and my complement 3a was elevated. I had a few other abnormalities, but still haven’t gotten all the tests Shoemaker recommends so I don’t have the total picture. I’ve always been sensitive to musty smells, antique stores, basements. Once I tested very allergic to alternaria, a mold resistant to modern fungicides, and I recently tested high in an intestinal fungus called Geotrichum which is also resistant to fungicides.

I am starting to see the extent to which mold may be a major factor in my illness. Today, I realized the the event which catapulted my first huge relapse was spending the entire day cleaning up a rental house which, a year later after I’d sold it, turned out to have a terrible mold problem in the attic and under the siding. I suspect I got a huge hit of mold that day which made me more susceptible to the stressor that evening (learning that my house had been set on fire by an arsonist) which put my system into overdrive, inflamed my psoriasis (now known to be associated with elevated TNF), kept me from sleeping, and led me to do a stupid juice fast which quickly brought on the worse orthostatic intolerance I’d ever had. (It got worse in 2007 again, but has been better for the last 2-3 years, Thank God.)

More than I intended to write. I’m getting back into the rambling mind of a brain-fogged person. I’d love to hear from those of you who have had issues with the cholestyramine or Welchol, and those who have gotten benefits. I’ve had too many experiences of drugs making me worse to try anything without making inquiries and taking it very slowly.   

I should add that some very knowledgeable people believe there is a biotoxin other than mold, such as one related to ciguatera, and something unidentified, that is airborne.  Such a crazy world we live in.  We should establish a CFS city in a bubble of chemical free living if only we could find a place on earth to establish it.  I suppose this is the realm of fiction.  Science fiction anyone?


  1. Janis
    I tried cholestyramine just twice on two consecutive days. I had really unpleasant side effects. My brain felt awful.
    I figured out it might be related to b12 and fats, and took a b12 shot and some omega 3 oils.
    Cholestyramine depletes b12 i read.
    I was warned by a pharmacist I could have a bad reaxtion..lots of PWCs do.
    I'm not clear why others can tolerate it.

    1. We are a family owned and operated company that cares about family values.
      That’s why we use 100% organic, non-toxic products to ensure the safety of your home.
      Our patented anti-mould formula kills all spores and micro-organisms on contact and prevents them from ever returning

  2. Get tested for Pyroluria and/or porphyria - search Steve Rochlitz well at last. Steve's theorizes that there may be a secondary porphyria causing the environmental illness and/or CFS. Good luck

  3. love your accounts, Janis. And so odd to see the pyroluria and porphyria comment here. I am pursuing these as well. Since under extreme stress after move from mold contaminated home, subsequent intensification reactions that seemed to hit me over and over, and my father's stroke, I crashed emotionally to the point of near insanity, remembered my kids tested positive for pyroluria and upped my p5p and within hours, my body and mind calmed.

    Craving for sugar may be a porphric reaction. I am reading that mold toxins can trigger porphyria. Sugar stops the synthesis of heme. The book mentioned is fantastic if porphyria is an issue.

    I experienced a two month long ANS attack, shakes, painful rigid muscles in left shoulder and arm after taking too much csm too soon and then abruptly stopping.. reddish orange urine followed, which tipped others off to tip me off to porphyria, which ironically, my sister tested positive for years ago.


  4. If you have mold problems in Costa Rica checck out this web site.

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  6. Hi, I haven't read your post yet--just found it via google search. I recently tested for the 11/12-3-52B haplotype and am extremely concerned. Looking to connect with others in the same situation.
    Austin, TX

  7. Hi Billy, it's definitely a challenge having the multisusceptible. I'll look for you on FB and help you connect to others in the mold avoidance community.

    1. Billy, couldn't find you on FB under either name. Look for me - Janis Bell (currently city listed is Nowhere,OK but I'm not really in OK, just wandering the west)

  8. Couldn't find you either. Facebook's search engine can be cruddy at times.

    Just read your VIP entry. I'm about to do that, as soon as they re-check my nasal staph

  9. toxins get produced and accumulation of these toxins reduces the immunity of the body and gives rise to the immunity related diseases.


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