Exercise As Detox

One thing that has bothered me for years is why I need 9 hours of sleep per night.  Why is it, that if I get 8, I’m pretty much non-functional mush for the rest of the day?  Other ME/CFS patients have mentioned they have a “magic number” of hours of sleep they need, whereas others are more fortunate.

I didn’t sleep well last night and woke up feeling pretty malaised.  Not “terrible” like I felt after 8 hrs of sleep in the past, but compared to when I sleep 9 hours here,  I feel more irritable, toxic, and the ME/CFS haze hit my brain & eyes with a vengeance.  I don’t know what came over me to decide exercising on this day would be a good idea, but it probably had something to do with feeling better after hiking the last few times I did.  Still, I haven’t hiked on a day when I started the day feeling very much like my ME/CFS ghost of christmas past.

The beginning of the hike was pretty unpleasant, but 20 minutes in, my eyes suddenly cleared up and I started taking in my surroundings again with clarity.  In doubt, I waited to celebrate.  After another 10 minutes or so, I found my energy picking up and feeling, for lack of a better descrption, “good” again.  Against all ME/CFS logic, I ended up hiking an hour today at a very brisk pace.  I even dialed my parents while I was hiking, and let’s just say talking while walking was nothing more than a pipe dream for the past 6 years if my adrenals had anything to say about that.

When I realized the haze wasn’t coming back, I thought with a good degree of certainty that what all the naturopathic doctors were saying about my sleep was true: that something important happens during the 8th hour which detoxifies my body.  Perhaps triggering the liver to release glutathione.  In the past, the only thing that helped with “8-hour malaise” in the past was coffee enemas, but even that only helped a minority of the time.  Taking binders of all types never helped.

This brings me to something Lisa and Erik have been saying for awhile: the body doesn’t seem to detoxify when it’s a bad place.  That’s probably why no matter what external measures I took, I could rarely resolve the 8-hour malaise.  I could empty out the sigmoid colon and gallbladder via coffee enemas, but systemic detoxification never happened.

Erik never took any CSM when he was working up the ability to hike for miles during the 6 month period in the desert.  Instead, he forced himself to exercise whenever possible.  Lisa didn’t really follow suit and wasn’t disciplined about hiking, but was disciplined about the CSM.  I wonder how I would fare over time combining the two, which I’ve been doing.  I never really had any inclination how good of a detoxification mechanism exercise was; certainly it’s great for healthy people, but I never thought it’d work for ME/CFS patients.  Therefore, I assumed Erik’s experience had to be a fluke.  After today, I’m almost positive it’s not, and that if I’m able to exercise without PEM, that’s one of the best things I can do to detoxify.

Another hint that hiking is a great detoxification mechanism is my sharp chest pains, which were exacerbated when I first started hiking last week, seem to be ebbing ever so slightly.  Lisa’s theory from the get-go was that I had toxins in my heart, whereas  always thought it was virii.  Perhaps it’s both, but exercise seems to be helping my chest pain (again, against all ME/CFS logic), and it’s hard to think that would be the case if it were caused by a bug.

One thing I’ve always had a hard time believing is that being a testosterone driven guy would be an asset on my journey to wellness.  As a ME/CFS patient, any drive just led to crashes.  I was forced, like all real ME/CFS patients, to set an energy envelope and adhere to it religiously if I wanted to avoid the slippery slope tomorrow.  Right now is really the first time in years I feel like the combination of my annoyingly high motivation and high testosterone (according to labcorp) are beneficial.  I’ve not gone hiking 1 out of the last 7 days.  My pre-ME/CFS gym rat mentality is coming back in full force and as it turns out, it may actually accelerate my recovery.

I’ve rarely had events in my life when something happens that makes you throw out everything you’ve learned about ____ (in this case ME/CFS) but this is definitely one of them.   What happens when you know a truth that’s so important it can changes lives and warrants rewriting the book on ME/CFS, yet no one that’s actually experienced said truth will ever believe it?  Nothing, mostly.

 

 

 

Another Day Without PEM

I can still hardly believe what I’m typing.  PEM, the hallmark symptom of ME/CFS.  Gone.  I increased my hike from a leisurely pace intent on keeping my HR below 105 at all times to a brisk pace with my HR constantly at or exceeding my anaerobic threshold (according to Pacific Fatigue Lab calculations of [220-age]*0.6.)  Not only that but I increased my hiking distance to 50 minutes.  My HR was at 120-130 nearly the whole time I was hiking today.  (That number freaks me out because clearly I still have POTS and I’m acting as if I don’t. )

By the end of the hike, my muscles were actually in quite a bit of pain (I don’t have fibro, for the record). It’s an almost alien sensation to feel my muscles aching like that, clearly due to my body’s reliance on anaerobic metabolism leading to lactic acidosis, while actually feeling totally clearheaded and, well, “good” overall.  Still I keep waiting for the PEM hammer to fall.  It’s usually when I discover I feel better at the end of the hike versus at the beginning, that I sheepishly allow in the option that I won’t get PEM.  Feeling better after any degree of exercise, mild or moderate, is something which has never happened before in all my 6 years of ME/CFS.

Oh and it’s not as if I’m resting for the rest of the day.  Here’s what else I did today:

* 3 loads of laundry in the morning followed by hang drying

* Driving to check out a few other RV sites

* Shopping at two different health food stores

* Getting on a one hour conference call followed by a phone conversation with my parents

* Hitching my trailer and driving to another RV site (this would’ve been the only activity I did in any given day in the past — hitching is physically taxing, and towing sets my adrenals off)

* Read legalese and did work for the last 4 hours on my computer.

So in a nutshell, my legs feel like battery acid, and I was a bit winded earlier (not anymore) yet I still plugged onward as if I hadn’t hiked for almost an hour.

The caveats: I know for a fact that I am still very reactive.  I tried out 2 different RV parks in town and my symptoms got worse.  They were in towns with relatively good air, but where I was staying before was in the middle of nowhere.  I’m not sure I’m able to exercise like this when I’m staying in an only moderately good place, because that triggers just enough inflammation and PEM to disturb my digestion and sleep profoundly (they go hand in hand for me).

Having always been a city lights guy at heart, I never thought I’d say this, but I’m hardly concerned these days about being away from the big city.  I thought being out in the barren desert would never be an option for me, even at bedbound status, but when you begin to lose your hallmark ME/CFS symptom, perspective, priorities, everything really changes.  This seems like mung beans to pay to be able to exercise again.  Moreover, with mobile internet devices, we’re hardly that disconnected from our old circles.  In the middle of nowhere, you can find others that also came to the middle of nowhere for purposeful reasons.  The fresh organic juicer and boutique health stores 4 miles away certainly don’t hurt.  It’s still civilization, it’s just not urbane.

On a side note: I had some very engaging and generally positive dialogue with some folks on Jamie’s blog the last 2 days.  I know better than to get my hopes up that the tide has shifted, but I do hope that our debates on the efficacy of biotoxin avoidance catch the eye of open-minded and analytical patients in the position to do something about this.   As a patient whom is as classic of a ME/CFS patient as they come, I do wonder how many patients could be hiking with me if doctors told patients to try biotoxin avoidance and avoidance efforts were planned and paid for by someone else besides ourselves.  Instead, most of these patients are waiting for a drug which does much of the same thing but takes longer (ampligen) to become affordable, or for drugs to treat a retrovirus which may or may not exist or be causative.  While a non-toxic, DIY treatment that costs what you spend on rent over 5 years is readily available right now.

In any case, I will post this exchange soon, as maybe some of you have the same questions or thoughts that our friends on Jamie’s blogs had.

The Big Test

The more I do this biotoxin avoidance thing, the more I realize the name of this blog is fast becoming inappropriate.  It looks like I will almost certainly be pursuing extreme avoidance for several months before I consider ampligen.

Last week I did something I haven’t dreamed of doing in the last few years.  I drove 11 hours in 3 days in a trek to warmer pastures.  I drove 4.5 hours in day 1, 4.5 hours in day 2, and 2 hrs on day 3.  I haven’t driven 4 hours in 1 day in at least 4 years, but considering all the other improvements I’ve had from avoidance, I thought it was about time I pushed the envelope.

I did need sleeping pills on one night, but besides that I had virtually no PEM from the trip.  In fact, I felt so good driving through the Southwest that I literally felt high frequently while I was driving.

Here are some real-time notes I cobbled together from during the trip (featuring both good and bad):

“After drive and shower, in my trailer. Hard to read but vision is clear. HR racing a bit, calms down after 10 minutes. Able to read clearly again and breathing is full and steady.”

“still very sound sensitive.  not as light sensitive – can drive at night without lights bothering me too much.  still room to improve here.  can sleep without totally enveloped sleeping mask.  wearing bose noise cancelling headphones is a godsend for driving when the motor is revving hard to tow 1500lbs up a hill. ”

“acid reflux is much better in good environment.  was constant (where I was staying before”

“Las Vegas literally looked like a different place because i was taking it all in and everything looked crystal clear. ”

“less pain from sitting for extended time in car.  in the past my butt, legs, back in burning pain within 2 hours. ”

“stress response seems dented.  about 30 minutes of my 4 hr drive was in stop-and-go traffic.  those that tow know that is 2x more stressful because stopping distance must be increased.  it was not pleasant and did feel like a little too taxing on the adrenals, but it did not burn them out or cause PEM.”

After a few days of trying to find a good location in Southern California, I’ve settled down in Yucca Valley.  I am still incredibly reactive at this stage, because staying in a location that Lisa and some others thought was good was actually the worst I’d felt in quite some time.  I feel much better up here.  I’ve started taking CSM for the first time and after 5 days have already worked up to 1 tablespoon of 100% powder 3x/day without any signs of intolerance.  I have some brain inflammation and sinus congestion, and feelings of extra grogginess, but it’s peanuts compared to any other serious treatment I’ve ever tried.

I was feeling good enough today to try another “first”: hiking.  I must say that I felt the initial signs of PEM, and just tipped the scales enough to actually have it, but it literally stopped after 10 minutes or so.  Before I started avoidance, I’d never experienced signs of PEM that did not result in PEM for the rest of the day.

Because I did not experience the ability to hike miles in the desert like other ME/CFS patients, I’m wondering if taking antivirals to help with the virii in the heart may be a necessary thing for me.  Granted hiking without substantial PEM is, again, something I haven’t dreamed of doing for the last 4 years so surely there must be room to improve, with or without AVs.

Here’s a short list of symptoms that have without a doubt improved since I started avoidance:

  • muscle strength
  • acid indigestion
  • brain stamina
  • vision
  • light sensitivity
  • stress response
  • gut inflammation
  • sleep (don’t need benzos in moderately good location, don’t need antihistamines in good location)
  • can do yoga right before bedtime without disturbing sleep
  • OI (can stand for much longer in grocery stores, take hot shower without needing to sit down)
  • POTS (resting HR was 90s, now 70s)
  • PEM

Limbo, Paralysis Analysis, Counting Sheep…

Over the last 3 nights I’ve been waking up every few hours.  Not totally wired, heart’s not racing, but waking up nonetheless.  Thought it was just some exposed fabric, so switched out all my bedding and all my clothes: same results.  Because I was able to sleep so soundly without benzos, I’m not going back on them.  That just doesn’t make sense to me.  Even without getting solid sleep, I’m still functioning better than I was before I moved to the trailer.  That’s the upshot.  The downside is I’m not feeling so good about the plan I laid out in my previous blog: to just do avoidance until I “max out” with it.  Whenever I’ve come to a fork in the road in the last few months, ampligen always seems like the easiest thing to do.  Which makes me wonder how much of my decision to pursue avoidance is me being as much of a mule as they come.  I keep telling myself: mold avoidance is the way to preserve the benefits that ampligen would give me and prevent the almost sure relapse that patients suffer once stopping it; ampligen doesn’t get rid of toxins! etc.  But how much of it is wanting to go off the beaten path and beefing up the underdogs’ theory (or at least help show that their theory is worth exploring)?  And how much of it is purely for my own physical good?

In any case, when I calmly count the good and baaad sheep, there’s clearly more good than bad still.  My lack of sleep is the only snag.  Again, I’m still functioning pretty well.  The odd thing is this: after not sleeping well, I’m pretty crappy in the morning.  So I follow my intuition, come home and take a shower (or decontaminate, as the mold warriors might call it) and then all of a sudden I feel golden for the rest of the night.  I can work, do whatever.  It’s 12 degrees outside (yeah no lie) and the fact that I’m still feeling pretty good is another testament to the benefits of avoidance.  I haven’t gotten sick (knock on wood), even when I’ve felt like I was coming down with something, so I think overall the immune system is just more balanced between th1/th2.  Moreover, my adrenal response has seemed to begin shifting.  Yesterday, after said crap night of sleep, I drove 40 minutes in the morning to go to Walgreens, Target, and the University hospital.  I drove to go get food and drove 30 minutes back.  I was not able to do much work for the rest of the day, but my adrenals didn’t completely burn out.  You know, that feeling where you’re just dead in the water, completely decomissioned, need to lie down, cursing your own existence.  Yeah, didn’t happen.

So it seems now that the inflammation is dampened, the adrenals also have less reactivity to have to dampen down.  My cortisol curve is probably still flat as a 12-year old boy, but clinically speaking, this is undeniably a good sign.

I’m still leaning toward doing extreme avoidance and detoxing, but more torn than ever.  I guess the fact that if the circuit breaker popped I’d probably turn into the Ice Man (please let me resurrect as Brendan Frasier), makes it more sensible for me to head for warmer pastures.  I’ve been saying up until now that the outside air is not a huge factor for me, but that must be short-sightedness speaking.  All the mold warriors are keen about the outside air being a huge factor, so changes in the outside air being the offending agent behind my shoddy sleep is certainly worth looking into.  I replaced all my bedding and swapped out a new pair of clothes, and that didn’t change my sleep a lick.  Has to be the outside air right? By elimination?

If it is the outside air, then besides the great possibility of “ick” during the winter, could it be due to higher air pressure (again, 12 thank-god-for-12, degrees) and lower oxygen content?  I wouldn’t think the lower humidity is hurting since avoiders do plenty well in the godforsaken desert.  If so I’m wondering if it’s  high time to break out my portable oxygen concentrator and get on the Deckoff-Jones oxygen bandwagon.   Some patients have been telling me they swear by it, especially for sleep as Dr. DJ says.

Another Update

Last week, I completely weaned off my sleep medications again.  Benzos, no less.  People have told me in the past how dangerous it is to wean off benzos so fast, especially after I had to take them daily for 1 year to get any sleep.  But when I listen to my body, it’s dead tired every night so I decided to follow its cues.  Without the benzos, my sleep quality has been better, no doubt.

One of the most noticeable changes for me now is day-to-day predictability.  Whereas in the past, after pushing a little too much with work or errands, I’d have a bad night of sleep and wake up before my magic number of hours totally wired and then be straight decommissioned for the rest of the day, now after overexertion I get however much sleep I need, and the next day I can still function.

Because of this day-to-day stability, I am able to work on an entrepreneurial project with a team of healthy cofounders that hold me accountable for a certain quality of work day in, day out.  I can’t hold a traditional 40-hr workweek, but I can probably do 40 hrs total of work a week.  I have to stay seated the whole day, take a ton of breaks, and my brain hits the wall after 2-3 hours.  But I can probably do 2 hours of top notch work followed by enough function for about 4 hours of mind-numbing tasks.   The best part is I pretty much know if I avoid biotoxin exposures, I can do the exact same thing tomorrow and the next day.

This change alone has made me scared about starting ampligen, ironically.  I’m confident that ampligen would only improve my capacity to do work over time, but I’m worried about the side effects on the way there and whether they would jeopardize my project.

On the other hand, I’m fairly confident based on mold warriors’ experiences with antivirals like famvir and valcyte, that if I can lower my reactivity with avoidance and detoxification (with CSM) then ampligen will surely be a much smoother ride.  So that’s my goal.  I’ve yet to figure out if staying in my current location will be the best way to get there, especially with winter setting in, but so far I’ve noticed that I don’t seem as reactive to outside air as I do to exposed fabrics, especially bedding.  When my pillow is exposed to the wrong toxins, that can singlehandedly ruin all the benefits I described above, and I wake up throughout the night with my heart racing.  The changes in outside air do not tend to disturb my sleep, and I’ve been through changes from the sunniest of days to the most depressing of days with very low barometric pressure.

I may take a vacation further south in the coming months just to compare how I feel.  If I feel drastically better there I’ll probably do avoidance there, and if it’s par for the course I’ll probably go back up north just because the medical resources are fairly robust where I am right now.

It’s weird to be taking treatment decisions so deliberately.  Certainly it’s a departure from my ways in the past, but desperation sows impulsiveness, and I was in a state of desperation for 4 years before finding the only thing that’s really worked — avoidance.

My other caveat is that based on the discussions I’m following from long-term avoiders, avoidance in and of itself should not be the end goal unless you’re ok with avoiding civilization and being OCD forever.  For me, I want this to be the means not the end.  I hear of long-term avoiders that are able to drive a lot more, function, even work (hey that sounds like me!) but once they get hit, they’re back to baseline.  They get the MCS back that’s been gone for months.  That scares me to no end.  What’s the point of all this hard work if you can fall back to baseline with one big hit?  But I look at people like Erik and Lisa whom have done hardcore detoxification, and their experiences are nothing like this.  Sure they still need to avoid the particularly noxious stuff, but it doesn’t take much decontamination and/or time to get back up the power curve.  I haven’t heard of their current exposures re-triggering MCS, for example.  Lisa could even go to Chicago and do fairly well there outside of the winter.

However, I can’t deny that the fact that they’re still reactive at all after years and years of avoidance and detox and bug-killing and restorative work (huge doses of probiotics, among other things), that they’re still reactive to stuff healthy people are not, at least not in the same way.  It’s pretty depressing that regardless of how much I avoid and detox and kill and for how long, I probably won’t get better than where they are.  (Well they haven’t taken antiretrovirals so that may be an exception but we’ll skip that topic for now) Obviously there’s a deep-seated change at the cellular level, whether it be loss of detoxification abilities, permanent disruption of hormones that shut down the reactivity response, etc.  I fear it’s not something we can fix on our own with anything we can do with effort or buy over the counter.  What type of role ampligen plays in this will be interesting: I’ve heard from 2 ampligen patients that their severe MCS improved dramatically.  Certainly it’s suppressing the reactivity response.  Based on Dan Peterson’s patients’ responses, it seems to be shutting down reactivity to even the Voldemorts of biotoxins in Incline Village.

Is the solution some combination of oral ampligen and avoidance?  I just hope we get the chance to test that out. GcMaf + avoidance is no longer as appealing on a theoretical level because maf seems to be exacerbating the problem we’re trying to solve.  For it to work for the purposes of this discussion, the reactivity would have to be caused by a bug that isn’t touched by the antivirals currently taken by ME/CFS patients.  If the bug maf is killing is just a bystander and not the cause of the mechanism of reactivity, then I don’t see how that would make things better.  It’s been several months and maybe 100+ patients on maf of various forms, and so far I haven’t seen examples of reactive people getting increasingly reactive (from maf increasing inflammation) and then getting much better after that.  Instead, I’ve heard of people that were not very reactive to begin with getting a lot better from maf, which wouldn’t be all that applicable to the rest of us.

Definite Cause & Effect

I’m sorry it’s taken me so long to update!  Much has been in flux since then, so I didn’t want to string anyone along for my indecisiveness.  However, the layoff has also been a good thing, because the importance of avoiding biotoxins has become clearer than ever to me.

For starters, the house that I thought was good still ended up being OK all this time, but I didn’t set out on this journey to get to “OK.”  It was clear that my body was reacting to stuff in there: every time I stood up I got vertigo, and I had a constant headache in that house.  Some may say those are just ME/CFS symptoms, and not too long ago I would’ve agreed with that.  In fact, when I was living in a house in Los Angeles that was way beyond the danger zone on the ERMI test, I felt like that (and worse) every day.  I thought it was “just CFS” too.  I couldn’t even use the computer for more than a few hours a day before I totally crashed.

Granted this house was much better than that.  I was able to function pretty well there, especially when it came to using my computer which is my lifeline (I don’t have TV).  Yet, I knew that I wasn’t going to do ampligen in that house, because that would be settling when I’ve experienced the other side. However, with the snow pouring on, I wasn’t ready to move back into an aluminum cold-conducting refrigerator on wheels.  So I found a place in the hills to try out.  Now I remembered what my moldy house felt like.  The irony is that you feel so full of CFS symptoms with that level of exposure that it makes it difficult to leave.  It lulls you into a false sense of rationalized comfort, not to say anything about having the siren of a TV again.  Man I forgot mind-numbingly delightful a free Harry Potter marathon could be 🙂

But I bucked up and asked the landlord if I could move my trailer into her backyard and stay there.  Shockingly she said yes.  My first night there, I crashed like a baby.  It felt like my body finally wanted to sleep for the first time in months.  Within a few hours, my brain & vision had come back online.  2 days later, the unbelievable happened.  I drove a ways to do 5 loads of laundry (carrying them all in trash bags), went grocery shopping, drove back, hung dry all 5 loads in 30-something degree weather, went back into my trailer and waited for the crash.  And waited.  Then I found myself stop waiting, and went to work on my computer.  Sure I was winded, but the burning PEM (and by burning I mean hot sensation all over combined with cold sweats and flu-like malaise) never came.  My heart took a bit of a beating, but stopping inflammation in its tracks does not fix your deficient organs.  I’ve learned that much.  However, I think that is half the battle, as Rituximab and Ampligen trials may have shown.

Of course, every time this happens, I pay for it dearly the next day.  Well, the unbelievable happened again: I drove 30-something miles downtown, went grocery shopping at not one but 2 stores, then went to a coffee shop and worked for a few hours.  Drove back, and stayed on my computer for much of the night.

No way?

And today, I drove the same distance back and forth.  I won’t lie: there was some profound fatigue today, but here I am blogging after a few hours of work so the PEM still hasn’t hit.  That’s 3 days of pretty substantial activity for me without PEM.

So with this experience, I’ve decided that biotoxin avoidance is a bigger part of the picture for me than I ever imagined.  I never experienced lessening of OI and PEM in my past attempts at avoidance.  These were core symptoms that I attributed to virii, and they still might be, but I now have my first experience of a subtle shift in those core symptoms due to only avoidance and no bug killing.  I’ve decided to get clear in any way I can, perhaps moving down to warmer pastures near the water for a few months, and taking CSM to detoxify and lower my reactivity.  Only then should I start ampligen.  That isn’t to say I don’t think Ampligen would make this whole journey much easier: the experiences of Peterson’s patients in Incline Village implies that Ampligen might very well make patients stop reacting to this stuff.  However, my going hypothesis is that by lowering reactivity first, ampligen will work much faster and without being as bumpy of a ride.  I’m only trying to get a certain point of function with Ampligen, because I don’t believe it’s a lasting cure.  Even if I could afford to take ampligen every year (which I can’t) I don’t want to because no matter what the safety profile is, it’s still a synthetic drug and I don’t want ongoing exposure to it.  Once I get to a good enough level of function (enough to work full-time from my computer), I would likely return to extreme avoidance and take a cheaper bug killer such as gcmaf on an ongoing basis.

That’s the master plan anyway.

Touchdown!

This unit really didn’t have the makings of a CFS sanctuary, but as we know looks can be deceiving with mold/chemical sensitivities.  Sometimes an old brick building from 1910 will be the best possible thing.  Close your eyes and follow your nose, cuz your nose knows.  Yeah I just said that.

Best of all, this is one of the cheapest units I’ve looked at and is month to month!  They have one of those european combo units that serve as both washer and dryer (no idea whether that’s better or worse from a mold standpoint, but I think it’d be a wash–YEAH I JUST SAID THAT TOO)

In short, I can breathe, sleep, and think in here.  My gut isn’t nearly as good as it is outside or in my trailer.  The bloating and indigestion hit me within a few hours, but that was also the case at my old residence which was in a great location.  I just don’t think a house, no matter how traditional the skeleton is, is gonna be “great” with all the modern chemical bells and whistles added.  Well one house was, but it was all hardwood and I was staying in an expansive living room with high vault ceiling: aka tons of ventilation in an already good house.  However, at some point if you need a place to crash for the winter, you need to estimate what the best you’re gonna get is, and I think this is the best I’m gonna get barring further massive expenditure of energy.

Being able to test drive a place for even a night is a huge privilege in a booming urban area.  Here, most 1 and 2-bdrms are reasonably priced (mostly around $600-$900, respectively—compare that to LA and SF where I’m from where the prices are double that), so with the strong job market the units that don’t wretch like 10 cats pissed a trail of organic roses to invite you in, get snatched up within a few days of listing.

I got lucky with this unit.  Mostly the units that will let you test drive are the ones that are trying to sell.  The landlord saw what a tough time I was having, so he let me stay the night despite having 2 applicants ahead of me.  I’m counting my blessings for sure.  Another plus is it’s literally 3 blocks away from where I’ll be getting infusions, so I won’t need to hire a driver.

So that means I’ll be starting ampligen on time, and since I’m not living in a great location and still have some gnarly location-dependent symptoms (nausea, gut as mentioned, nasal congestion) I should be able to tell if amp is helping me with my sensitivities just by looking back at this blog.  Perhaps this is a blessing in disguise?

My Gut Tells Me….

As I’ve moved around to better and better places, my gut is telling me to keep on doin what I’m doin.  A few weeks ago, I started taking xifaxan as well, a drug that a few ME/CFS physicians such as Dr. Peterson and Dr. De Meirleir have been using with some success for Prevotella and enterococcus.  It was demonstrated in a clinical trial to help IBS significantly versus placebo as well.

This next paragraph will possibly be TMI.  Those who know who I am and don’t want your non-defecating facebook version of me to be shattered… skip to the next!  My main gut issues are bloating due to inflammation.  I’ve had what feels like chronic constipation on and off, except I experienced just enough daily gravitational pull (!) to not qualify for actual constipation.  I’ve been on an increasingly strict diet since 2008, when I was still able to eat plenty of gluten and pretty much lived off of mexican food stands.  In 2009, I went completely gluten free, dairy-free, sugar-free, yeast-free and became a very repressed person from an oral fixation standpoint.  In 2010, that got even stricter as I cut out grains and legumes largely and still watched my chicken + vegetable diet not do a damn thing for my gut bloating.

Since I moved to a trailer, that situation has reversed in miraculous fashion.  I am finding myself eating an entire bag of lentil chips (legumes!)  without getting brain fog or gut bloating afterwards.  Same thing for rice + bean chips.  Even when I overeat white rice, I am getting no backlashes.  It’s weird when you still can’t eat half the things the rest of the world eats, yet you’re eating 200% more food than you did months ago.  Sure this may be entirely due to xifaxan, and I have no doubt it’s part of the picture, but my experiences with one-week trips into good locations while I was residing in a bad one tell me otherwise.  During these trips, my gut symptoms went away almost entirely, and when I came back to civilization, they were usually back within 1 day.  Perhaps the xifaxan is just helping shift the average closer to less bloating, but I doubt it’s the cause of the miraculous reversal.

Now I’m gonna go eat a chicken (some things don’t change) except it’s in chimichurri fashion enough potatoes to make 2009 and 2010 me incredibly jealous.

If I Get Any More Sensitive, I’ll Cry For No Good Reason.

“I have chemical sensitivity and I just need to make sure I don’t react to the paint”

“I have mold sensitivity and I just need to make sure I don’t react to any mold spores since there’s a basement”

“I have an autoimmune disorder….”

I’ve put some major mileage on all excuses to try to “test drive” a house.  For those that are severe reactors like me, renting a good house in a booming urban area has about as good of odds as winning the lottery.  I wish I could say I were being persnickity but if I can’t sleep on the first night, I might as well hand the landlord rent x 12 because I’m sure as hell not gonna be able to sleep there any other night.

To make matters worse, I had my first cause-and-effect experience with “ick”, the particularly noxious biotoxin that seems characteristic of certain places like the Bay Area, Michigan, Lake Tahoe etc.  I did laundry at a friend’s house that used to live in the East Bay.  They did not bring their washer/dryer with them to Utah, but all their furniture, clothes, and cats.  I thought since they’d been here for 2 years, the “ick” would’ve denatured by now.  Boy that was an expensive assumption.  All of a sudden, I started not being able to see clearly, think clearly, or breathe deeply in my trailer that was perfectly fine the day before.  I thought it was the city air, but that didn’t make sense since it had gotten warmer, not colder.  It took me about a week to figure out due to Lisa’s suggestion that it might be “ick”, at which point I took all that fabric to a public laundromat to wash then hangdry—twice, crashing further in the process.  I threw out every piece of clothing and bedding except for my thermarest self-inflating pad, woke up in the middle of night in a tizzy, crazy wired and listening to my heart go nuts.

At 6 am, I said f it, I’m starting over and headed to Target to buy all new clothes and bedding.  The next three hours of sleep felt like the first real sleep I’d had in a week.  Just like that, I became a believer in “ick.” It took personal experience feeling better in a different location to believe in the location effect, and it took personal experience with “ick” to realize just how bad “mold” could be.

It seems like washer/dryers are more problematic because if they’re contaminated, whatever they’re contaminated with gets into your clothes.  Just touching the same surface doesn’t seem to have the same effect.  Good thing, because I was freaking out about now having to buy new clothes if I sat in the same chair as someone else carrying this gnarly agent of silent buzzkill.

The downside to this revelation is I now harbor no shred of doubt that I’m a severe reactor, and that it will take either avoidance, ampligen, or the combination to lower my reactivity to toxins.  I’m at the point where I’m realizing that sitting in one corner of Whole Foods might allow me to breathe perfectly fine, and the opposite corner might make me hyperventilate.  Not an exaggeration.  Certainly avoiding this stuff seems prudent at the moment but doesn’t sit well as a long-term solution.  If I do have to avoid this stuff for the rest of my life, I have no idea how I’ll carry a normal relationship with family, close friends, or ever dream of having a significant other again.

The plus side of this experience is that I’ve learned to trust my instincts and perhaps no longer have to sleep in a place to rule it out.  I still need to sleep it in to seal the deal, but at least weeding out a place has become more reflexive.  Because I know what ick feels like and I now have a pile of clothes crawling with “ick” in public storage, I’ll also know if ampligen enables me to stop reacting to it.  If it does, that will be a big clue into what’s going on with us and a powerful testament of Ampligen’s efficacy (maybe not to those who don’t believe in it, but to those that have experience cause-and-effect, trust me it’ll be nothing short of a miracle.)

I’ve asked my doctor if I can postpone ampligen infusions due to my difficulty finding a place, and doc said the latest we can push back is 10 weeks from baselines.  Major disappointment since I was hoping to screw this whole house-finding business and just wait until the house in the middle of nowhere was built.  I need to find out if I can still secure my spot in the trial if I do postpone.  A part of me still really wants to go to Florida with Klimas and live right on the beach in Coconut Grove for a relatively low cost since right on the beach is where mold avoiders tend to have no shortage of success despite the high humidity (certainly whatever’s plaguing us isn’t just your grandparents’ mildew-y mold).  But that’s a huge investment of time, energy, and risk that I don’t feel comfortable taking on at the time.  Perhaps that might be a wiser move later down the line when ampligen has dampened my sensitivities and increased my reserves, but if I moved there now I would probably have the same difficult finding a suitable residence that I have inland.  It’s nice to know that’s an option for those on the east coast though and maybe those of us who don’t have the results we’re hoping for on ampligen at other trial sites.  I would think living on the beach within a stone’s throw to infusions in Kendall would get us reasonably close to the Hawaii effect.

What is it about Hawaii?

There’s something about this magical place that makes ME/CFS patients feel better, there’s no doubt about it. Even people that are skeptical of this effect at first later admit that they were able to do more or surprisingly checked a symptom off in hindsight.

A few samples:

1) Dr. Jamie Deckoff-Jones talks about feeling better upon landing on the big island: “I’ve been in Kapa’au, on the Big Island, for the last two weeks seeing patients and have felt noticeably better since I arrived. Pretty definite cause and effect. It’ll be interesting to see if it lasts through a third week, when the benefit of the altitude change should be over; this is the first time I’ve stayed so long.”
http://treatingxmrv.blogspot.com/2011/09/random-thoughts-upon-returning-to.html

2) Poster “PokerPlayer” on Phoenix Rising also feels significantly better, including improvement in one of the hallmark symptoms of ME/CFS, exercise intolerance: “When I go to Hawaii I get a big difference in depression and physical tolerance to exercise. I am going on the theory that it is the clean oxygen that helps with this. So, I am going to try hyperbaric oxygen therapy hopefully soon. However, there is also some theory that mold can be aggravating this disease, and I live in washington state, one of the worst places.”
http://forums.phoenixrising.me/showthread.php?13799-Mold-or-Oxygen-Feel-better-in-Hawaii

3) Poster “DannyBex” on Phoenix Rising reported: “I felt “better” in Hawaii too — back in 2007 for six days.”
http://forums.phoenixrising.me/showthread.php?13799-Mold-or-Oxygen-Feel-better-in-Hawaii

4) Friend #1 is housebound in the states, loses PEM in certain locations, including Hawaii. Was able to tolerate alcoholic drinks in Hawaii.

5) Friend #2 is housebound in the states, has signs of autoimmune disease, has been sick for over 20 years. Ex-ampligen moderate responder. Was able to do a lot more in Hawaii without crashing and had less pain, although did not lose PEM.

6) Friend #1 has heard from 3 other patients that also feel better in Hawaii.

I have plenty of examples of patients feeling better on other islands, including Bainbridge and Carribean islands, as well as certain beach cities such as Yucatan. However, a hypothesis about a single location is much more controllable.

So what is it about this place?

1) Some say mold, but the humidity would make it unlikely that the mold levels there are lower than most places in the continental US.

2) Some say a particularly noxious strain of biotoxin that is a result of modern civilization, nicknamed “ick” by some in the mold avoidance community, but there is plenty of industrialized activity in Hawaii. To test this hypothesis out, we would have to have large numbers of people compare how they feel in industrialized cities like Honolulu versus how they feel in more rural areas such as cities such as Kapa’au where Dr. Jamie Deckoff Jones is.

3) Some say oxygen saturation, but plenty of cities that are at sea level and humid are hubs for ME/CFS and do not seem to exert the same effect. Also, most ME/CFS patients that get hyperbaric treatment do not experience the same lift.

4) Some say air quality, and this seems like a reasonable hypothesis, especially in areas in Hawaii that get the nice trade winds and are away from VOGs.

My personal opinion is that it’s a mix between the amount of modern civilization and industrialized chemicals used and the trade winds and ocean breezes that tend to blow everything away from any particular coastal point on the island. Again, people tend to feel good right on the beach in the continental US. Dr Myhill suggests that to get away fro mold, you either get on top of a mountain, go to the desert, or hit the beach. Mycotoxin experts say right on the beach, not one block away. So this “right on the beach” effect is surely a factor in what’s going on with Hawaii.

If I had my way, I would do ampligen in Hawaii. It’s too bad that the open label trials are all being held in places that no avoidance experts would consider “good”.

– Incline Village is the heart of the epidemic of ME/CFS, Osler’s Web points at some type of toxic exposure during the epidemic, and most important to me: I feel terrible there
– Salt Lake City during the winter has some of the worst air pollution in the country. Some days I feel pretty good there, others I have trouble taking a deep breath.
– the Bay Area and Charlotte are both known for mass-producing ME/CFS patients. I was one that got sick in the Bay Area so it’s got that going for it. Charlotte also has some of the worst smog and ozone levels in the nation.
– Manhattan is only the industrial mecca of the world.

Bloody weird logic if you ask me.

Update: I forgot that Dr. Klimas is setting up shop for a trial in her private clinic in Kendall, FL.  Of all the places to get amp, would this be the best?  One, it’s near the southern tip of Florida, at around the same latitude as the Bahamas where many patients report feeling good.  2) It would allow patients to live right on the beach, which has been established by now as having beneficial effects on its own, without a long commute to the doctor’s office (ampligen patients want to minimize commutes as much as possible). 3) it’s right next to the Everglades so nearby industrialization is reduced