Monday, February 21, 2011

End of vacation and more

The last two days at Manuel Antonio, I finally got to see monkeys. They were coming to the wet bar by the pool in the late afternoon for bananas.  I managed to hang around long enough by resting up earlier.
We had 2 spider monkeys and 3 white-faced monkeys, all adorable. The spider monkeys were within 2 feet of me as I stood by the railing next to the guy tempting them with pieces of banana. One dropped a piece of banana which I quickly picked up and set on the railing a few inches away. The monkey was afraid, so I stepped back; immediately it swung down, picked up the banana with its tiny fingers, and stuffed it into its mouth.  My sister got lots of great pictures.

At night we watched a sloth denuding a large tree of leaves.  I was feeling much better and climbed up 3 flights of stairs to get a good look at it.  It should be the CFS mascot, as it moves pretty slowly.  Here's one crawling upside down.

There were lots of beautifully colored birds.  I don't remember the names of any of them, but here are some pictures.  The most common were the yellow and red ones.  I only saw the blue ones once.

I made pretty good progress over the course of the week, although the 2nd time we went to the beach and I took a walk for 5 minutes or less, I was wiped out all the rest of the day and too tired to go out to dinner.  I felt well enough the next day to walk to a great restaurant, El Patio Cafe Milagro, which was 2 blocks from the hotel and required a climb uphill on the return.  The food was worth it though, absolutely top notch, with interesting combinations.  

I hoped to maintain that good level on the trip back, but as soon as I got into the van there was a funny smell.    Within half an hour, I was freezing cold, then sleepy.  Finally I wised up and we turned off the A/C.  The outside air helped me to feel better until we got behind a truck.  By the time we arrived in San Jose, I was congested and sick.  The hotel had air fresheners polluting the air in the hallways but it took about 3 hours before we figured this out.  By that time, I had swollen glands and had become hyper.  Not surprisingly, I didn't sleep at all that night, and with my stress hormones and inflammatory cytokines pumping out all night, I felt exhausted and hungry the morning of the trip.

The amazing thing was that the air on the airplane actually felt pretty good to me once we got up in the air.  And by the time we arrived into Washington DC, I was okay, just tired from lack of sleep.  Alas, Reagan airport (DCA) is not a great building for mold sensitive individuals, as Shoemaker points out in his recent book Surviving Mold.  By the time we got through customs and baggage claim, I was coughing.

Again, I recovered within about 3 hours of being in my Mom's apartment.  I slept about 9 hours and was tired when I woke on Monday.

I had a surprisingly long consult with my doctor Alan Vinitsky.  I'm extremely impressed with the breadth and the depth of his knowledge.  He's been helping me with methylation, but this time, with my awareness of mold and other toxins and their dramatic impact on my brain, breathing, immune and endocrine systems, we talked quite a bit about Shoemaker's work.

Dr. V has seen people do much better once they get their methylation working.  He ordered a gazillion tests in order to get a complete picture.  I could sense his desire to get to the bottom of it, to help me identify toxins in my environment and find ways to get my endocrine system working more efficiently. Right now, two of the most important regulatory hormones in the body, in the part of the brain called the hypothalamus, are extremely low.  This leads to low adrenal hormones, low thyroid hormones, low digestive hormones, and poor immune regulation.  He has some ideas of how to work with all this complicated stuff, which really impressed me.

For now, I'm going to start on very low doses of his basic 6, namely B12 (hydroxy), Folirinse, B6, taurine, Vit C, Mg.  I'm also going to do a small amount of 5 MTHF (Folapro) and some decaf green tea.  Apparently the ECGC in green tea helps to reduce inflammation and helps reduce some of the toxic byproducts of serotonin metabolism.

Wednesday I go back home with my ERMI test kit, ready to look for sources of mold in my living space.  I'll let you know what I find.  If it's not fixable, I'm wondering if I can afford to move to some temperate climate where I won't need to bring a winter coat and snow boots.  How lovely that would be!

Tuesday, February 15, 2011

Steady improvements in Manuel Antonio

We checked into the Mariposa Thursday evening. I had to go around sniffing everything in the room. It passed the test, barely, because it had been constructed with lots of circulating air. Huge sliding glass doors that open; doors to the closet and bathroom that don’t touch ceiling or floor, open slatted dressers, and air-conditioning in the rooms. We all hoped it would be the place for me to recuperate.  It was too dark to see anything outside.  

The first night, I slept hardly at all - I had trouble falling asleep then woke at 2:30 and felt excitable (that high glutamate feeling) and couldn’t get back to sleep even after eating. When I opened the shades at 5:15, this is the beautiful view I saw.  I also heard the howler monkeys and some birds. What a treat!  I felt I'd be content to lie in bed all day looking out at this view.

It is unusual for me to wake hungry at night, and now, after reading Shoemaker, I understand what is going on. This is the cascade of an innate immune system inflammatory response, which when it reaches a certain point, causes high cytokines and brings in the adrenals and hypothalamic adrenal regulation (cortisol and ACTH) in an attempt to restore balance. It usually takes 4 days to reach maximum reactivity. This piece of information helped me to understand that feeling worse at Mariposa was to be expected as a complication from the mold exposure and was not something to fear. But I did need to do something about it, if possible!

All day Friday I had much more trouble standing, my feet hurt all the time. The best part of the day was my Trivedi blessing. I set my intention on getting relaxed, and I dozed off briefly during the rest period. I was hungry for sugar all day, feeling this urge almost as soon as I finished eating. I tried very hard to resist, and without snacks around, it was not too hard.

Thanks to my wonderful internet friends, by the end of the day, I had an emergency strategy.  Vitamin C (I had with me the fat-soluble ascorbyl palmitate known as Ester C), Magnesium, Activated charcoal, coffee enemas, Modifilan (an absorbent algae, usually used for metal detox).  I had to work with what I had available.

I collected information about Welchol and cholestyramine which discouraged me from trying it.  Shoemaker says people don't tolerate it and don't improve if they are still in an environment with an average level of mold.  They have to be living in a mold free bubble with an ERMI rating of -1 or perhaps +2, depending upon their level of an immune factor known as C4a. I haven't had mine tested, but my very low score for MSH, a hypothalamic hormone, tells me I ought to look for the safest level before I undertake that strategy.  

A short term alternative, suggested by a chapter in his recent book, Surviving Mold, was to get coconut oil, which we bought in town later that day. Mold toxins are fat soluble toxins, which is why they are so devastating to the nervous system and the cell membranes, both of which are composed primarily of fatty acids.

To be safe, I took a 1/2 Xanax, turned off the light at 11 and went right to sleep. Woke about 3:30 just mildly hungry. took another 1/2 Xanax and slept until 7:30.

Although I felt tired when I awakened, after a few minutes of centering and meditation, I felt good, almost normal in the head. I looked outside at the marvelous view and suddenly wanted to go down to Manuel Antonio to the beach, to run into the ocean water and feel it embrace me. Desire is a good sign. The previous two days I wanted nothing.  At breakfast I continued to feel great! Seeing boats out in the water,, the desire to be out on a canoe or kayak came to me.  Yay!

Now I know I’m not ready to fulfill any of those desires. I wouldn’t even try. But it’s a sign to me that I’m turning around, not continuing to go downhill from the mold and the exposures, but starting to go uphill toward recovery.

Sunday and Monday I started to feel the urge to do a bit of activity.

The pool here at Hotel Mariposa is an L-shaped pool without chlorine, with beautiful trees and the splendid view of the Parco Nacional de Manuel Antonio in the distance. I spent most of the day Saturday and Sunday at the pool. It has no chlorine smell (unlike their jacuzzi). As I started to feel better, I did a trial immersion up to my knees to see if I’d get any signs of dryness or itching. The pool passed, so on Sunday, I took the plunge.

In addition to a tiny amount of swimming on Sunday, by mid-afternoon I had the urge to take a walk around the grounds of the hotel. After that, I still had enough energy to sit up in the public area in order to read and respond to e-mail.

Sunday night I slept peacefully, without medication, for perhaps 9 hours, waking at 5:30 to hear the howler monkeys and then going back to sleep until after 7. I felt fully rested when I awakened.  This is extraordinarily rare for me!

after a leisurely breakfast, visited by a local monkey and an iguana, I had to urge to go to the beach. The nearest beaches are in Manuel Antonio, and they are fairly crowded with all the hordes of tourists around here. Since we had to stop in Quepos at the car rental office, we decided on the Quepos Beach. The rental agent discouraged us, and sent us driving about 30 kilometers to the most beautiful, isolated beach between Quepos and Domincal called Matapalo. It was glorious. Lots of shade trees around the parking area, which came right up to the beach. A slow, gradual deeping of the ocean water with gentle breakers lapping at the shore.

I went in the water twice and sat in the shade for about 1/2 hour. I took a short, maybe 5 minute sun bath when I was wet, but the sun here is incredibly hot and it tired me.

I was tired all afternoon. But it was worth it for the joy of going in the ocean. I'm still a little tired today, and know something isn't right since I feel bloated from lunch 4 hours later.  But I am doing a whole lot better and at least I am having a very pleasant vacation.

Although we are close to the equator here, in the shade it is pleasant, and there has been a nice breeze for the past several days, allowing me to enjoy time in the room with the windows open and no air-conditioner.

My dream is to come back someday with the energy to tour the mangroves, the rainforest, the beaches, to hike to waterfalls and walk on the little bridges suspended 20 stories above creeks at the canopies of trees.  It might have to wait to the next life, but for now, it is fun to look at the pictures.

Here are a few more pictures from the hotel.  Oops, don't think they loaded correctly.  

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?