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.   

Friday, March 9, 2012

CFS, Viruses, and Toxins

A couple of French researchers discovered exactly what I’ve been thinking about viruses and CFS.  When I clicked on the link http://www.intechopen.com/books/an-international-perspective-on-the-future-of-research-in-chronic-fatigue-syndrome/chronic-fatigue-syndrome-and-viral-infections and read the masthead, my heart sank.  The researchers were in the Psychiatry Department at a French University.  Thinking with annoyance of Reeves and his cronies, I started reading hesitantly. 

The researchers do a nice job of summarizing the literature on the various viruses associated with CFS.  But what interested me most was their summary of research showing that viruses can alter cell function without killing a cell.  Normally we think of a virus attaching to a cell wall, penetrating it and taking over its DNA to make new viruses. 
Eventually the cell bursts and the new viruses spread throughout the body infecting more cells.  While they are taking over a cell, they’re hidden from the immune system.  So it stands to reason that it takes a while for the immune system to search out and destroy all of them.  And in many cases, the viruses go latent--that is, they are contained by the immune system so they don’t invade and replicate.  But during periods of stress, cortisol, the main stress hormone, rises and the immune system is suppressed (which is why we get prednisone, a synthetic cortisol, to calm a horrendous case of poison ivy).  The latent viruses can become reactivated at those times, as measured in the blood by increased antibodies.  This is what happened to me in May 2010 when Coxsackie virus antibodies quadrupled.

Here’s what the researchers had to say about the way viruses can cause a change in cell function, even though they are no longer active in the body.

Another mechanism by which persistent virus infection produced disease was uncovered after the discovery that some viruses could alter cell differentiation (i.e. the “luxury“ function of cells), without causing cell destruction, and thereby altering homeostasis. For example, whilst examining the effects of persistent lymphocytic choriomeningitis virus (an RNA virus which infects mice) infection on differentiated neuroblastoma cells, Oldstone (Oldstone et al., 1982) noted abnormalities in the synthesis and degradation of the neurotransmitter acetylcholine caused by decreased production of the appropriate acetylase or esterase enzyme. Nevertheless, these neuroblastoma cells were of normal morphology, growth rate, cloning efficiency and in levels of total RNA, DNA, protein and vital enzyme synthesis. Infected cells were indistinguishable from infected ones by both light and high resolution electromicroscopy. In man, after infection with influenza virus, peripheral blood lymphocytes no longer performed their expected specialized functions, including antibody synthesis and they no longer had the capacity to act as killer cells (Oldstone, 2002). Hence, this human RNA virus altered the different cell functions without lysing or destroying them. Viruses act very subtly on a cell and disorder its function, but not so severely as to kill the infected cell. Yet, for the host, the end result is perturbed homeostasis and disease.

This theory fits in nicely with William Rea’s study of hypersensitivity and chronic disease as conditions in which homeostasis is altered in the intracellular matrix.  When I read this book, I thought about a webinar Metametrix offered last year on chronic illness resulting from the BP spill in the Gulf.  These people started out with symptoms of toxicity from the solvents they were breathing and absorbing through their skin and eventually started to show evidence of multiple chronic viral infections.

Viruses and other pathogens more easily invade a body when the tissues are damaged.  They also invade more easily when stress has suppressed the immune system.  The presence of persistent toxins creates chronic physiological stress, so even when a person is not feeling emotional, he or she can still be experiencing stress.  Ditto with inflammation, which rises during infections, from biotoxins and other noxious substances (pesticides, herbicides, solvents, toluene, etc).  In sum, once the body degenerates into chronic illness, it becomes more and more likely that a new insult will create further damage.  Thus, chronic illness becomes chronic degenerative illness.

Rea’s work also syncs nicely (from a layperson/non-scientist POV) with Ritchie Shoemaker’s work on biotoxin illness.  The circulating biotoxins, whether from Lyme, dinoflagellates, ciguatera, or mold, create a chronic inflammatory condition which suppresses regulatory hormones and neuropeptides while elevating markers of general inflammation and immune function.  Shoemaker doesn’t talk about permanent changes to the cell.  Indeed, his goal is to reverse the illness by clearing out the toxins with binders, reducing inflammation, and raising the depressed endocrine molecules.  For this purpose he uses cholestyramine, fish oil, Actos, and supplementary ADH and VIP. 

We need more CFS researchers to look at altered cell functions in CFS (as Light and Light are doing), and more virologists to understand how viruses can leave cells alive but not fully functional.

We also need innovative healers to work on discovering ways to normalize dysfunctional cells.  Are stem cells the answer?  Or can we clear out the toxins and restore the body to a high nutritional status to see people fully recover from this illness.  Thus far, I know many improved patients, but only one person who claims to have fully recovered and gone back to an active life.  Others who are improved continue to work and exercise, but restrict their life in other ways.

Sunday, March 4, 2012

Obsessed with Housing

I think I could live in this Cahuilla Indian house made of palm fronds, set alongside the shore of a clear stream of water bubbling up from the San Andreas fault where the water comes up from deep in the earth for a few hundred yards, and then goes underground again.  I am in Palm Canyon, on Indian land about 10 minutes from downtown Palm Springs.  The place is not much of an improvement on my tent though.   No wi-fi, no electric, and it's not for rent.  Back to my search for conventional housing.


For the last 2 months, it seems that all I can focus on is housing.  I browse Craigslist and the MLS until late at  night, longing for the perfect residence to flash across the screen:  MOLD FREE HOUSE WITH GREAT AIR.  I also looked at RVs and came very close to buying one until the owners changed their minds about selling.  

I started my search in early December looking for house shares in the desert near Palm Springs.  When that didn’t pan out, I searched apartment rentals, found something wonderful fairly quickly, offered to write a security deposit on the spot, and walked away with a rental application.  I thought I had the place and even packed up my car to move stuff over there.  But alas, the place fell through (the landlord thought he’d told me to bring the application back the next morning, but I knew I was going out of town and couldn’t return it until the evening, which I did, alas too late.)  I was left feeling heartbroken for at least a week, and like a rejected lover, no other rental unit looked good enough to consider. 

I moved onto searching rental houses, but after a few realized that the strong odors of cleaning solvents and new paint interfered with my ability to tell if a place was a good, mold free dwelling.  Indeed, they usually sent me gagging back to my car.

And so I decided to buy, thinking I could surely find an inexpensive house where the monthly payment would be less than what I might have to pay for rent.  Forty-five houses later, I realized that mold is ubiquitous in indoor buildings in the desert. And perhaps other toxins from cyanobacteria are also problematic for me.

Now this doesn’t make a whole lot of sense in an area where the average annual rainfall is 3 inches and nearly every mold in existence needs moisture.  But with mold in the air, in the desert crust and the blowing dust, in the lumber and drywall of the building interest, it shows up.  I suspect there is quite a bit of condensation with the temperature extremes of 30 to 40 degree differences between daytime high and nighttime low.  Perhaps also, a certain carelessness developed in home construction attention to drainage given the general lack of rain.  But what seemed to kill most places I saw were water leaks either from the roof or from indoor plumbing.  Few places assaulted my nostrils, but most had visible signs of water damage.  And that was all I needed to move on.

To make my life more complicated, in January I started reacting to something at the RV park where I was camping.  That something kept me from sleeping nearly every other night.  I couldn't identify the cause.  At first it seemed to be emotions, but when they calmed down I thought it was a new supplement, so I stopped everything, and when that didn't work, I looked for sources of contamination, and found a journal from my Ohio house that I’d brought into the tent.  Following the advice of those experienced at avoiding mold, I washed everything.  I spent more on Laundromats that month than I have in a lifetime!  

In late January, I moved into a vacation rental in Palm Springs to enjoy a visit with family. I knew the moment I entered the house that I wouldn’t be able to stay inside, but it had been impossible to book anything through vrbo, or airbnb that would allow me to check out an occupied vacation rental.  I spent 3 weeks outside on the cold, shaded patio of the vacation house wishing I were back in my sun-drenched tent.   You can see it on the left next to the pool where my mother is swimming. 

 The sun in the desert feels strong. Even when the highs are 68 or 70, it feels hot in direct sun but still fairly cool in the shade.  Since the patio was covered and on the north side of the house, it never got sunlight to warm the concrete.  My down parka, ski pants, and down booties had constant wear.  I welcomed the opportunity to drive in the car just to warm up.  Most of the time I slept fairly well, and consistently – a relief after the torment of the previous 3 weeks!-but I longed for air outside the city and felt better when we went out into nature.  We hiked in Andreas Canyon, Tahquitz Canyon, and at Joshua Tree National Monument.   We warmed up in the saline hot tub and picked lemons off the tress for lemonade.

Andreas Canyon near Palm Springs
H


Palm Oasis at Andreas Canyon


David, me, and my mother


Tahquitz Canyon looking into the valley
David, Beth, me at Joshua Tree 
 When the vacation rental ended, my mother flew home and David joined me in tenting for 5 days.  We went first to Joshua Tree where we met up with Joey and Beth at an RV park.  The wind there was wicked.  The temperatures were substantially lower than in the palm springs area.  We had frost on the tent fly every morning.  On the 3rd day, the temperature dropped and the wind gusted to 40 degrees, blowing us off to Starbucks and the local organic cafĂ© to hang out.  We got in a great hike in at Joshua Tree (Black Rock area) when the wind calmed down.


Back at our RV park, the wind continued to blow in fierce gusts.  That night I impulsively booked a one way flight to Hawaii.

Beth was already planning to go.  It seemed like a nice idea to pair up, making this foray into the unknown a bit less scary.  And here I am.  Aloha!

This place has beautiful views of the ocean and harbor and great air circulation.  It felt great to me at first, but over the course of the week, I feel my health declining.  I’m more tired, and getting symptoms I haven’t had since I left Ohio like dry mouth, constipation, tenderness in soles of feet.

 I love the verdant foliage and the sound of the ocean, and hope to find a good place to live.  But I fear that the overall dampness of the climate (28 inches annual rainfall in Waikiki compared to 3 inches in Palm Springs) is triggering the immune response of CIRS.  It’s tough to figure out where to move., so I spent hours searching the web, reading about rainfall and drought, picking through the classified ads for a place with a large outdoor space in a dry area.

Oahu (the island we chose because Beth’s brother lives here) is congested but does have a dry area we are going to investigate tomorrow.  In the meantime, I sit out on my lanai (a covered terrace) typing, eating, sleeping and KEEPING WARM, with short visits to the beach.  It's expensive but not a great place for me.  We're off to see more places today and tomorrow.  I'll definitely be moving soon. 

I may have to do some camping around here to see if I can feel great in a damper climate when I’m out in nature or whether I’m destined to spend more years in the desert.  I really don't want to camp anymore.  But on the other hand, I'm sick and tired of being sick and tired.  It's not an easy choice, but I'm grateful for the opportunity to make that choice.  Many of my friends with this illness are too sick to consider camping, or don't have the financial resources to go anywhere, and haven't had the opportunity to see their health improve by getting away.  I'm very fortunate, and I remind myself of that as I listen to the surf hitting the beach and the gulls cawing as they swoop through the Hawaiian sky.