Lost In The Fold

Several people have emailed me privately about the veracity of Lisa & Erik’s claims, some even saying that they’re not as healthy as they make themselves out to be.  I have combed through much of what Lisa & Erik have told me.  Yes, they continue to insist that somewhere close to everyone has benefited from doing avoidance according to Erik’s protocol.  There was one case I mentioned in my previous blog as the one anecdote that runs counter to this trend, and Lisa readily agreed with me about the lack of benefit (thus far) in this case.  I don’t see a shred of dishonesty.  Sure, when they talk about avoidance to a bunch of newbies in a post, the summary of anecdotes must come off like snake oil: after all, what other treatment in our community has exceeded even a 50% success rate (yes including Ampligen)?  But when I dig deep & ask for details, the details they’ve given me have been most consistent with what I hear from the source.   From what I can see, Lisa has eagerly welcomed scientific skepticism of her “theory” on the forums.  Additionally, I’ve seen Lisa in person and I can tell you: I would absolutely kill to be as functional as she is.  From what I hear of Erik, yes his lifestyle must appear really odd to people not decontaminating in a big city, but he works a full-time job & can climb more mountains than your sherpa ancestors.  So although I often disagree with their methods, I have no bone to pick with Lisa & Erik’s honesty.  They are not omniscient of all facts in every anecdotes, and they’re clearly trying to tell a narrative about avoidance, but why do two very intelligent individuals (one that worked w/bioweapons, and another that has a PhD from Northwestern, both of whom could surely be generously financially rewarded doing something else) continue to tell this narrative for zero pay?  Think about what they have to gain from lying.  Please, just think about it.  I think they press on because these anecdotes of sick patients hiking again are staring our community in the face and deserve a real research study.  That’s the only logical reason I can come up with.

I think the point here is: does extreme avoidance benefit as much as it did for Erik?  Is your expectation to climb Mt. Whitney?  If so, extreme avoidance may have a 50/50 chance of being a great disappointment!  But there are many out there whom disagree with Erik & Lisa (on several ends), yet readily admit to benefiting from mold avoidance.  Paula Carnes writes on Jamie’s blog that mold avoidance is not a cure.  Whoever said it was one?   Whoever said Ampligen is a cure?  But would you not jump to take ampligen if it cost the same as your nightly sleep medications?

I sure as hell can’t climb Mt. Whitney yet, and I sure as hell don’t want to tempt fate by doing so.  Hell I celebrated climbing 1000 ft 4 months into extreme avoidance.  But here’s the bottom line:

2010: Crashing from 10 standing pushups against a wall after $20,000 spent on an experimental treatment.

2012: Burning from 210 pushups

I’m far from healthy.  I still have bad brain fog & debilitating gut issues, and you may say “HA! gotcha!”   But if I were still me in 2010 and I knew that doing this would lead to 2012 me, I would simply say, “feel free to focus on the details while I start getting ripped.”

Optimism In the Midst of ME/CFS Silly Season

Since my last 2 admittedly pessimistic blogs, I’ve gained what I think is new insight. First off, I’m fairly certain that my downturn & insomnia were due to exposure to contaminated belongings. My sleep quality correlated strongly with my categorical removal of possessions that had been washed with a contaminated water supply.

Secondly, I am now forced to stay in a place that is not ideal because it provides adequate shade for my heat intolerance. As a result, I have brain inflammation constantly. Despite that, many other post-avoidance improvements have held up. I can hardly believe this, but I am now strength training at a level which might be at or greater than at my pre-illness peak:

– Reps with Perfect Pushup device (designed to optimize pushups): 3x 50 (~ 3x 80 normal pushups). 2 months ago, I was doing 3x 30 Perfect Pushups and that was the equivalent of 3x 50 normal pushups.

– Chins-ups: 3x 15 (more for pull-ups.) Was struggling hard with 3x 7 two months ago.

In 2010, I crashed from doing 10 pushups against a wall.  

– I often play basketball on the same days as weight lifting, so I usually do 2 days of moderate aerobic / max anaerobic exercise followed by 1 day rest. In short, at least with exercise tolerance I’m physically peaking while living in an environment which is clearly causing inflammation.

Note: I have been taking creatine about 2x/week, and I think it definitely expands exercise capacity (Shoemaker said it increased V02 max more than ampligen), I’ve also been able to do the above exercise regimen when I’ve forgotten to take creatine for weeks at a time.

This experience has given me a lot more confidence about what happens if I have to leave the pristine desert. I no longer believe it’s black or white, that I’ll relapse if I have to go back to old locations. I have much more confidence in Erik’s methodology of using a MECU & avoiding contaminants to preserve gains, rather than avoiding the big city altogether. All of this gives me hope of returning to a compromise between total isolation & life in the big city, which I know is a desire shared with many other patients (especially younger ones) considering avoidance as a treatment.

I’m actually thankful for my heat intolerance because it forced me to leave my comfort zone & experience a location that’s good but far from great.  I can now see that less-than-pristine won’t cause a relapse, but instead may still allow me to continue healing beyond my greatest pre-avoidance imagination.

Despite my disagreements with Lisa in my previous blogs, I want to give credit where credit is due, and in the case of “Point of No Return”, at least in my case, I think you’re right, with the big caveat that as long as I could identify the contaminant & do something about it, I really don’t think I’d relapse in a moderately good location.  With that said, identifying the contaminant has never come easy to me, and reminds me of Where’s Waldo without the fun.

Next step: Figuring out if my reactivity has gone down at all.   Tent, we meet again!

Clarifications

In light of recent criticism of my last blog post from some members of the avoidance community I highly respect (namely those that have been most instrumental in guiding me on this exercise), I feel compelled to clear up some points. To be clear, I am not willing to bend to their POV simply because I respect them, but rather I’ll discuss their points of criticism respectfully & thoughtfully.

Criticism was directed at the following:
1) My posing of the concept of “Point of No Return.” Basically, this was interpreted as me suggesting the concept that we cannot return to our old places (bad homes or bad locations) without, essentially, dying. They suggested that I was saying this without any evidence whatsoever, and they also suggested (with a great degree of certainty) that my heightened reactivity to tents, trees etc must be due to a biotoxin exposure, rather than simply me being reactive.

2) Me using this concept and the difficult of my journey to conclude that I would never advise anyone to do this.

Response to #1:

I merely posed the concept, which was made clear by my re-titling of the section as “Jury’s Still Out.” I have not come to any conclusion, also made crystal clear that if I had spent more days in a moderately bad place, perhaps my insomnia would have subsided as my body “masked” the response.

I do not share the certainty that you guys have that my reactivity to chemicals and seasonal allergens is due to a biotoxin exposure, and here are two reasons why:

1) I couldn’t tolerate multiple tents I tried in the high desert of CA where I otherwise felt fine. I also couldn’t tolerate tents in NV, where I moved to next. My MCS later on was simply a continuation of this.

2) I felt fine when I left the high desert of CA, and then when I returned to a place that felt “good” to me during moderate avoidance (Deer Creek State Park), I felt ill this time with brain inflammation. I then felt better again as soon as I returned to a dry location, and then I felt ill again as soon I touched down in Montana. Therefore, my feeling ill with brain inflammation and allergies in forested areas began prior to these exposures.

Now, I agree that I had 2 biotoxin exposures, one in Montana in the north end of Gallatin Forest (I know because I felt terribly ill there as soon as I entered), and another one possibly due to contaminated water used to wash my clothes. After discovering this, I removed all items that had been washed, which helped moderately. This allowed my insomnia to subside, but did not however fix the unrelenting brain inflammation, shortness of breath, increased brain fog & PEM that I have in an isolated forest area (which I’m forced to stay for now due to the heat)

If the car was contaminated in Gallatin, there’s not much I can do about that at the moment besides removing items from my car, changing out the filter system, and driving it up to 10k feet and back down (all of which I did), but important note: I didn’t have the above inflammatory symptoms when I stayed in an arid location (where I felt great) post-Gallatin exposure.  Thus it wouldn’t make sense that the car is the cause of these symptoms.

My carefully-put-together train of thought so far then, is that these lingering inflammatory symptoms and MCS are not due to a biotoxin exposure.  I share the opinion of an expert avoider that it appears that some people simply have problem with the woods, reasons unknown. I think that is the case with me, because I’ve been to now 5 different forests since extreme avoidance, and all of them feel problematic. This includes Bryce & Zion, which several avoiders found to have great air quality.

As for the refutation of my point because it was posed “without any evidence,” I can only say the following: the entire portrayal of biotoxin avoidance as a treatment thus far has been based on anecdotes with an indeterminate sample size. Regardless of how my experience differs from the “norm”, it should be taken as a data point because this is an observational study. Secondly, how is the norm being defined? Q1: Have 100% of patients not experienced increased MCS and other “benign” environmental sensitivities as a result of doing extreme avoidance, rather than due to an acute exposure?  Another patient doing extreme avoidance right now, whom started at the same time as I did, has also described an uptick in MCS which wasn’t a big problem for her prior to extreme avoidance.  Q2: Also, how many patients have done extreme avoidance, then returned to only a “moderately bad” place, had unrelenting insomnia for several nights, and then “masked” this response after staying there?

To establish whether my anecdote is truly an exception or outlier and whether the “point of no return” is a ridiculous concept, I believe these 2 questions need answering. Additionally, My anecdote should not simply be disregarded as “lacking evidence” because it is the evidence, in this case.

Response to #2

One person who criticized me for saying this has also said they wouldn’t advise others to do extreme avoidance because it is so difficult.  Another said they wouldn’t advise it unless the person had no other choice.  Both have said that their point in helping people with extreme avoidance is not to advise anything to do avoidance but to increase the research into this phenomenon.  One person openly advises people to grab a tent and go camp for 2 weeks in the middle of nowhere.

When discussing a treatment that has substantial risks (which is undeniable in my mind), I don’t think I’d be comfortable advising anyone to do it. However, if someone decided they’re still interested, I would be willing to discuss my experience and even help with logistics, as I have on a number of occasions. In other words, I wouldn’t advise anyone against doing this either. That’s not up to me.

The point of my blog is to portray my experiences transparently to give people the most material with which to draw their own conclusions, and currently that experience can be characterized as insanely difficult. I’ve removed the “wouldn’t advise..” line from my last point, as I think it just causes unnecessary confusion.

Somebody I Used To Know

This post is going to reinforce a lot of old notions about biotoxin avoidance, but it’s also going to illustrate my personal deviations, sometimes wild, from these.

To catch up, since the last time I posted I’ve migrated north to escape the heat. Heat’s always been a big sticking point since I can’t sleep in my trailer once it hits 75 degrees. After realizing I wasn’t gonna be able to get quality sleep in my trailer short of sleeping at 8000ft elevation or going to Canada, I decided to try tent camping. What came next was shocking: I could no longer tolerate any tent. Name it, I tried it. I went through at least 20 different tents, including brands people said were MCS-safe. Not only that, but I was reacting to sleeping bags that would’ve been fine before. Now keep in mind I was in MCS purgatory pre-avoidance, but this is definitely MCS hell.

After that, I tried sleeping with the double doors of my trailer wide open and bug nets, but now I find I can’t tolerate any bug netting either! Not polyester, not nylon.

Then I tried sleeping outside with just a screen room tent and a cot, but surprise! I seemed to be reacting to the outside air!

This pattern of sleeping between a rock & a hard place has continued to today. With 7 months of extreme avoidance now under my belt, I’d like to summarize how my experience compares with my earlier ideas about avoidance:

Jury’s Still Out:

1) There is no such thing as a “point of no return”.  In my case, there is simply no way for me to return to a house that I lived in pre-avoidance because I can’t sleep there, even with Restoril a medication that used to work wonders for me. Although I was warned about this, my understanding was that the body would compensate and allow you to function in that environment. I haven’t tried staying in a location I’m reactive to more than a few days (since by that time I’m running on empty and every signal in my body is telling me to bail), but perhaps if I did, the insomnia would subside.

2) Reactivity starts coming down around the 6 month mark. I’ve done avoidance for almost 9 months now (extreme for 7) and my reactivity is clearly at an all time high.

3) The locations that other avoiders find beneficial should also be fine for you. As you become more reactive, you could react to pollen, grass, benign molds, etc. It seems that being reactive to these pre-avoidance increases this likelihood. Not being able to sleep outside when your house is an oven and you can’t tolerate A/C might actually mean something incredibly scary: not being to sleep anywhere at all! Everyone is different, even if avoiders are somewhat similar, so now I’d probably advise to a new avoider: expect to become reactive to pretty much everything and above else, have back-up plans for MCS-safe shelter come temperature extremes.

4) Avoidance is a cheap treatment.This may be true compared to ampligen, but it’s much costlier than I first thought. I didn’t think I’d go through as many sets of clothing and bedding as have. I’ve written off around $1k-$2k of clothes (I buy the cheapest clothing possible: hanes, walmart), moving around from campground to campground when you need electricity is really pricey (it’s only affordable when you pay monthly in most cases).  If it weren’t for the generous return policies of REI, walmart, etc, that number would just be scary. Still, that probably pales compared to how much I used to spend on supplements in an 8-month period.

New and confirmed ideas:

1) The brain changes.  Restoril was my go-to sleep drug and now if I’m reacting to something and need Restoril, it likely won’t work nearly as well as it did before. The only thing that seems to resolve my insomnia is changing locations or decontaminating.

2) Avoidance is not just a bandaid: it’s healing. Even for the first few months of avoidance, if I didn’t sleep I invariably couldn’t function. I haven’t had solid sleep in more than a week, yet I’ve been driving 4 hours a day, half of that towing a trailer, and pretty much haven’t had much downtime each day. Today I still managed to work out (30 pullups) and play basketball after driving 4 hours and shopping.  Similarly, my toxicity continues to lower (TMI alert!): during the first few months of avoidance, when I didn’t have BMs, I would feel toxic pretty much until I did. That is no longer the case. I still feel better after BMs but that overwhelming feeling of toxicity seems gone for the most part. CSM seems less beneficial now, as I no longer feel a clear difference from taking it and sometimes go days without taking it. Coffee however still feels like a very good thing in the morning by sing the liver & gallbladder.

3) Cognitive progress is slow. My mental stamina feels improved, but it’s still tremendously weak. While I was physically fine on little sleep, I haven’t been capable of any cognitive strain (creative writing, for example).

4) The heart is a sensitive thing.When I’m pushing myself hard, I feel it on the left side of my chest. When I’m exposed to biotoxins, I also feel it there. The heart is an important tool for detection, and repairing its weakness is much harder than repairing every other muscle.

Conclusion:

There were several times this past week when I asked myself if I’m insane for continuing with this. I’m not living anything close to a normal life, and now I’m also unable to do work (which was the one thing that made all this so easy to overlook). However, due to the experiences of those before me, I believe that right now is the hardest part, and that the reactivity should come down soon. The fact that I’ve become physically stronger even as I pretty much hit obstacle after obstacle for the last 2 months shows that even while I’m reactive, my body is healing.

Avoidance is much harder than anything I ever imagined. I can also see why only a handful of people have done extreme avoidance. It is hard because it affects your sanity, makes you extremely isolated if you’re doing it alone, and may totally incapacitate you without leaving any exit strategies at times. But if I knew all that I know now 7 months ago, I would still do this. That’s how sick I was, and how close I was to suicide before I started “moderate” avoidance 1.5 years ago. Although I don’t think this is a “healthy” mentality, I measure much of my self-worth by my ability to do meaningful work, so the hope of being able to do that was solely how I justified the decision to do ampligen. Compare that to aovidance, which has afforded me the opportunity to work 90% of the time and not spend $20k to get there. In summary, it is hard as all hell but it’s worth it to me. If things stay as they current are forever, I reserve the right to change my mind!

Wuthering Heights of Reactivity

There’s this saying we have amongst us rookies in the biotoxin avoidance game: “I hate it when Lisa & Erik are right.”  It’s not out of disrespect or obstination, but rather, the ideas they’ve conveyed to us are often such inconvenient, maddening truths that we hope that they’re not true.  One case is when Lisa told me doing extreme avoidance may be the point of no return, and that I may not be able to tolerate this house which felt fine at the time & was a house in the desert which I moved to in order to try mold avoidance!  Another case, same idea: I decided to commit to biotoxin avoidance during preparation for a clinical trial with Ampligen because my experience  living in a trailer in a place that’s considered a “somewhat good but far from pristine” location enabled me to make noticeable improvements & I wanted to max these out since this was a drug-free approach.  I never expected that after extreme avoidance, I wouldn’t be able to tolerate this location.

This last week put these ideas and more to the test.  It has shown me just about everything good & bad to do with my current phase of avoidance.  As I mentioned previously, I still have major heat sensitivity issues, so I was forced to leave the desert as the temps were kicking up to make getting solid sleep in an aluminum box nearly impossible.  For the last week, I wasn’t able to get my usual 9 hours of sleep, which is still the magic number my body needs to wake up feeling rested.  I got somewhere between 6-8 on every night.  Although I was feeling rundown, I was still able to be out and about every day.  I was able to drive 4 hours a day en route to my summer refuge from the heat.  I honestly thought not sleeping well for a week straight would turn me into my old CFS self, or at least close.  I was very fortunate it did not.

However, I  was not able to sleep in that house in the desert this time, with temperature control and a progressively more potent sleep cocktail of melatonin, benadryl, and restoril.  Yes Lisa was right.  

After that, I hit the road again & then came full circle with the “somewhat good but far from pristine” location, including a state park that felt pretty damn good to me back then.  This time, it felt straight up toxic, and I did not feel like myself there.  Back when it felt relatively great, I was not yet “unmasked”, whereas this time I’m at the height of my reactivity, which goes way up before it goes down during avoidance.  For these reasons, I understand why this place felt so much less tolerable.  As soon as I got out of that bad zone, I felt my vision clear up and that sense of my brain lift from a catatonic, go-thru-the-motions state.  The plus side is that I hiked 3 miles even while I was in this bad location, and did not totally crash the next day. I did however, feel the beginning stages of PEM, where my legs were occasionally shooting with severe inflammation.  The full-fledged version just never came.

So to wrap up, the bad: I realized just how f-in reactive I am, which Lisa warned me about by saying places which felt fine before “unmasking” may be totally intolerable this time around.  This makes finding a place to do extreme avoidance much more difficult if I still want to have convenience & culture within a short drive.

The good: I’m driving 4 hours without rest a day, even when I feel like crap, without crashing.   I was able to hike for 3 miles in a place that felt bad without crashing.  My constitution is definitely stronger.  There’s also a building case of cause & effect, where I know that once I get to a good location, I”ll be back to my working/hiking self, as opposed to freaking out that this “CFS feeling” might stick around this time, or that this crash might just not go away.  This type of confidence goes against the very day-to-day unpredictability that was inseparable from ME/CFS in my past.

My greatest fear now is that because I experienced feeling great from extreme avoidance, I won’t be able to spend time in certain cities I love which my body reacts to.  This is potentially depressing & devastating thought to many people I talk to about avoidance, whom always ask me whether there’s an escape plan from the desert.  When reactivity comes down, maybe I”ll be able to tolerate more, but from my observations of others doing this exercise for a long time, it gets better but doesn’t go away.  Lisa for example is no longer that reactive but she is still clearly bothered by the big city.     Erik lives in Reno but not exactly in a practical way dodging plumes left & right.  There is always something common that triggers inflammation in both their cases.

I’m trying not to let this bother me too much.  I would feel too selfish to expect to have it all again, when a year ago I wasn’t able to walk more than 2 aisles of the grocery store without risking PEM.  I hope that my reactivity will go down to the point where I’m able to live near an awesome city, but if that doesn’t happen, I still have no grudge to bear (although having a starbucks nearby is always in high demand).  Obviously this is not the mindset for everyone, but I’m beginning to think this exercise only makes sense when your bigger picture in trying it is about favorable tradeoffs & benefits outweighing the costs, rather than “having it all.”

Avoidance = Braving The Elements? Pft.

I hear this a lot from other patients considering avoidance: “But I’m not outdoors-y” or “I’m just not a tent person!” A lot of biotoxin avoiders seem to tolerate the elements really well, and have even talked about spending summer in hot/humid places to detox more.  Let me tell you something.  Even before I got sick, I never slept well in a tent.  The first time I slept well in a tent was 2 winters ago, in my backyard with 2 infrared space heaters and me in the middle.  This was after I gradually became unable to sleep inside my house.  Yes that’s a fire hazard, but that simple modification was the only thing that allowed me to give this a fair shake.  If I couldn’t sleep in my tent comfortably , I would never have realized how much better I felt sleeping outdoors.

However, my first real trials with extreme avoidance were totally and utterly discouraging.  My first trial was in a tent in 30-40 degree weather.  I barely got any sleep, and almost gave up on the whole thing.  Several months later, I gave it another shot & went to a desert where it was 90+ during the day.  I’m not exaggerating when I say despite getting sleep this time in a tent, I felt like I was gonna collapse from a heat stroke at any given moment.  When I finally starting reaping the benefits from avoidance later in the winter, I thought my first 2 trial failures were due to not staying out there for long enough.   Now that it’s summer again, to my surprise I feel a lot worse in the extreme heat: really lethargic, OI is probably worse, more shortness of breath.  Now temperature sensitivity is one symptom I actually expected to go away almost immediately after hearing the experiences of other avoiders, but not only did that not happen but it still hasn’t resolved 5 months after I regained my ability to exercise.  In hindsight, it was a terrible idea to begin this exercise outside my comfort zone.

Here’s my 2 cents to anyone with extreme temperature sensitivity that’s considering avoidance,this may muck up your ability to see changes, and that trying avoidance within your comfort zone may be a more productive exercise.  The camping industry has evolved rapidly.  Air mattresses are no longer considered comfortable.  REI 2.5 inch (height) camping pads are as comfortable as any mattress I’ve ever used, and if you’re sensitive to cold, get a larger tent to accommodate a space heater.  Don’t try to brave the elements if you’re not cut from the same cloth as some others.  We’re all different here, even if we’re very much the same.  Wind is a big issue for sound sensitive folks like me, so if you’re tent camping, splurge on a 3.5-season tent or even a 4-season tent which is built to withstand wind without flapping around all night.  Even if you get a trailer, if it’s small it’ll rock around in the wind so stabilizing jacks are a must.  Even then, wind blowing on a metal trailer is much louder than blowing on a house.  It can be downright frightful when the wind kicks up to 20-30 mph.  So I invested in a pair of Bose noise cancelling headphones, which were $270 from a Bose outlet.  That may seem like a lot, until that first night you start swearing at your inability to ever fall asleep with the wind blowing and traffic at a 9-iron distance, and then turn on the headphones to hear a world you don’t hate again.

More on the space heater: a radiant Holmes heater ($50 from Target) allowed me to feel comfortable anywhere from 14 degrees to 60.   It’s also super quiet.  Convection heaters didn’t work for me because they’re loud and they smell.  It’s much harder to reduce heat to your comfort zone because portable A/C are always loud.  An evaporative cooler might work if you’re in a dry area, but probably wouldn’t lower the temp by more than 5 degrees.  Thus for me at least, my comfort zone for desert camping seems to be anytime outside of summer, so long as I have my space heater and 2 sleeping bags.  Summer will need to be spent up north, and I happen to be en route to Grizzly nation!

Still Climbing

This is the probably the 20th time I’ve set out to write this blog, and with some peer pressure I’m finally getting to it.   I would rationalize this as a good sign that I’m getting busier, but it’s probably just laziness!  Don’t think avoidance cures that unfortunately.

Holy crap it’s been 4 months since my last update.  The plus side of my laziness is that this update will actually be worth something in noteworthy changes since the last one.

Physically, I’m noticing continual improvement.  Although back in January I could push myself to get to 4 miles on flats, for the last 30 minutes I was literally dragging myself through the desert like a scene of  The Ten Commandments.  I could feel my feet pool in typical OI fashion and my feet actually hurt from swelling.  Although I didn’t get PEM I was definitely very fatigued and actually wanted to sleep or rest for the rest of the day.

Now I could do 5 miles on flats with relative ease, with far less pooling in my feet.  So there is definite improvement with OI, while walking at least.  My muscles also still feel spry at the end of 5 mile, and after the hike I can actually do normal activity for the rest of the day, so there’s the endurance.

Back in January I was probably capped at 3 miles while climbing.   Over the past few months, I’ve done a 1000 ft climb several times from about 4500 to 5500 ft and whereas the first one nearly keeled me over, the last one I did a few weeks ago didn’t feel like much of a challenge.  Yesterday I did a 5 mile route with at least 50% of it being climbing.

Standing still continues to bring out the worse in my OI, but even then it’s light years better than it was before starting this exercise.

Resistance training came along faster than the aerobic.  Thus, there’s not as big of a change since January, but it seems that in the last few months something clicked anaerobically as well.  Although I could lift weights just fine in January, my muscles still felt detached in a sense, and deceptively weaker than the amount I could lift.  Driving would tire out my left arm, and lifting my arms straight up while lying in bed tired them out rapidly as well.  Even holding them up on the table to type on my laptop wouldn’t last long.  All of those symptoms are gone: it feels like my muscles are constantly “there” for me now.

I’m also operating better on little sleep.  Before avoidance, if I slept less than 9 hours, don’t talk to me until I finally get 9 hours: that was a rule.  I was cranky as all hell and just felt poisoned the whole day.  For the past 2 nights, I’ve slept 7 and 8: great hours for a normal person which felt like a pipe dream to operate on for me.  Yesterday I drove 2 hours to hang out with my mom for 6 hours, and today, I feel totally fine. It seems that the issue is detox.  I’m sticking with my theory that something very important happens detox-wise in the last few hours of sleep, and if I don’t get those hours, I better find another way to detox if I want to make it through the day in good shape.  CSM has been somewhat good for that, but exercise seems to be more consistently helpful.  I’ve gone on hikes where at the beginning I feel like I’m dragging my feet and can barely make it another 10 minutes without something breaking down, and then find myself feeling great 20 minutes later and hiking for 1.5 more hours.  Amazing.

So all in all, very tangible improvement.  My body is obviously reconditioning at this stage, and I’m taking a great 22g plant protein powder along with creatine to help it do so.

Now the not so good news: my brain doesn’t feel improved at all.  I feel like I have more brain stamina, but cognition (ability to read, comprehend, hold dialogue) really haven’t budged.  This despite being on 1350mg of Valcyte, which I was hoping would help at least with this.  I’m not complaining because even if I’m operating at partial capacity, at least I’m able to maintain work long enough to accomplish tasks I need to accomplish.  That alone is, well, a big accomplishment.

My reactivity is still very high.  I’ve had fitful nights of sleep depending on what pieces of clothing are hanging in my trailer.  Hopefully this will come down during the 6mo-12mo mark.  Fortunately, I think I’ll be able to stick it out in pristine locations for now to keep the detox going at a good rate.

Misconceptions: I thought that my temperature sensitivity would go away on avoidance.  It’s improved to where I can  hike 2 hours in 85-degree weather, but I can’t sleep well in this weather at all (hence the 7 and 8 hours I mentioned).  My trailer is made of aluminum so it conducts heat (and cold) really well.  I do fine with a space heater in the cold, but the heat is overbearing.  I was hoping I could stay in super-hot weather to further promote detoxification, but I don’t see that happening anymore.  Perhaps a sauna is the next best thing.

So all in all, things are more or less on projected trajectory.  If my brain ever comes around, I’ll be jumping up and down and hugging locals that keep wondering why this bum in tanktops and shorts never leaves Starbucks, but really even if this is the finale of my improvements, I wouldn’t complain one bit.

The Ascent

It’s official. My body and brain have officially divorced. It feels like my body is becoming closer & closer to normal (when the air is good) whereas my brain’s progress is glacial.

A few weeks ago, Lisa suggested that climbing was huge for Erik. When he was still really sick, apparently climbing 300 ft up the hill from his driveway made him feel better — hard to relate to that story but I didn’t quite shelve it either. I was starting to hit a wall somewhere around 4 miles of hiking, which I know sounds ridiculous, but my goal isn’t to hike the longest but to continue pushing my body with exercise as a primary form of detoxification.  I knew that at some point I would do what Erik did, but the time had to be right.

Well my family visited me a few weeks ago, and probably due to nothing short of raging machismo and feeding on the fuel that was my family’s happiness that I appeared normal from the outside again, I decided to do a 400 ft ascent as part of a 3 mile hike with them.  Yeah logic went out the window here, but then again, the discovery that I could hike 40 minutes within touching down in the desert didn’t happen “logically” either.  If all attempts to test our bodies happened logically, Erik would’ve gotten to Mt Whitney when he was 80 years old.  Well, imagine my surprise when I started feeling better as I really got into the ascent, almost like my body felt like it could run up the hill. I thought I’d crash for sure, but I didn’t. In fact, my legs weren’t even much more noodly than they were from hiking 4 miles flat. It seems that the noodly legs are a function of exertion and time, not just exertion. Therefore, my body seems to be able to exert more if I cut short the time a little bit, and vice versa. That’s my hypothesis for now anyway.

After my family left, I rolled with it. I went on another 400 ft ascent.  This time, my lungs felt like they used to feel when I did 7-mile mountain runs in college, or cross-country races in high school: winded and heaving, but not swollen.  At night however, I developed this scary sharp pain I’ve never had before, where I could notice the swelling whenever I swallowed or took a deep breath. Very disconcerting, but Erik told me he has the same acclimation issues when he first started clmibing. I thought it made sense actually, that this was due to deconditioning and would thus improve with conditioning, since only a month ago I was struggling to walk 40 minutes at a very measured pace and now I feel like my body actually wants to go running rather than hiking. Maybe mostly rationalization, but I knew I wasn’t gonna go the ER so I might as well test the theory out, feeling comfortable that this wasn’t serious enough to be fatal.

Well I hate to sound like a broken record, but Erik was right. A few days later, I did a 350 ft ascent followed by immediate 300 ft descent and roundtrip back (750 ft total ascent) as part of a 3-mile hike. This time I don’t think I had any lung issues during the hike or at night, or the next day.

The crazy part is: this was the second-to-last hike I made in college right before i got sick, and I remember how difficult this hike was at that time because I had bronchitis. How surreal that I now, after 6 years of ME/CFS and still with it, have an easier time physically doing the same hike that I had trouble with during the months leading up to ME/CFS? I was in denial for so long, and my body is actually improving from pre-cfs.

Today, I did another 500 ft ascent in super windy conditions at sunset (hiked a fourth of the way in pitch black–stupid timing!) and right now I feel great.  On the way down from the mountain I felt like making a run for it, but I rationalized that there’s no benefit to running at this point versus the type of hiking I’m already doing right now, so why fix what ain’t broken?  Yes even on endorphins highs I rationalize.  That must prove I’m still a ME/CFS patient (jk)

On the anaerobic side, I’m continuing to max out upper-body plus abs workouts as I do on all non-hiking days, and I seem to be getting what feels more like the soreness I used to get after working out rather than screaming total-body burn and intractable pain in my left chest I was getting a few weeks ago. Thus it seems that even my heart is improving with exercise, which I didn’t expect at all.

I started famvir 2 weeks ago, and I don’t think that’s playing much of a role in what I’ve  described so far, because the two things I was told to expect it to do in the near-term (lower reactivity and help my cognitive abilities) haven’t really been helped at all. Therefore, I’m inclined to think all the improved exercise capacity is just due to the other R&R, rehabilitation and reconditioning. I had some nausea when I first started the drug but it’s more or less worn off now, so I don’t feel much at all from taking the drug. I’ll be starting Valcyte shortly.

Now the ugly: my body is still as sensitive to bad air quality as usual, and I don’t foresee that changing for another few months. Changing oxygen metabolism and anaerobic capacity is clearly an easier game for me than changing immune reactivity.  All my friends ask me if that means I’ll be staying in the desert forever.  Well of course I’d rather not! But if my reactivity never goes away, then really it’s a no brainer since living in the desert beats the crap out of feeling sick 24/7.

Year of the Gym Rat

I did some thinking the last few days about the people I know that have recovered from illness.  In a previous post, I touched upon the issue of testosterone in men and the role it plays in pace of recovery.  I wonder if this also plays a role in the things we should do to achieve recovery.  Erik largely used exercise to get where he is today.  Lisa did not but is no less functional.  Exercise was a large part of Mike Dessin’s recovery.  First anaerobic, and then aerobic to the tune of playing pickup basketball 2 hours a day.  Sergio made his first big leap on LDN and becoming a gym rat.  You could see from his before/after pictures how much of a commitment he made to resistance training.  Now he is in medical school, living in a dorm, studying medical textbooks at the tune of 10 hours a day.  A female friend of mine that recovered from ME (a similar presentation as Mike’s including scary weight loss) and is working a full-time job in the finance industry now, never exercised much as part of her recovery.  She simply felt better after stem cells.

This isn’t meant as some sort of official survey, but just jogging some examples in my head.  In any case, I think there is something to be said for the hormonal strengths and weakness between men and women being something that should be part of one’s recovery.   For example, women have more hormonal surges (especially during pregnancy) that tend to have a dampening effect on inflammation to the point they often go into remission; ironically they also suffer from more autoimmune illnesses.  On the other hand, I’ve heard from ampligen patients that Peterson typically gives half the normal dosage of ampligen to women, whereas many men remain on the normal dosage.  Whether this is due to men demanding the higher dosage or women have an easier time lowering inflammation, I’m not sure.

After thinking about this and also thinking back to 2006, when I was still going to the gym 3 days a week (I would totally crash after each session for a day, but then I’d drag myself back again the day after — I was able to sustain this for a few months before my body totally gave out).  By this time, however, my aerobic abilities had pretty much deteriorated completely.  I could do weight training in moderation without crashing; I seemed to never be able to swim, bike, or run without crashing.

Earlier this year when I moved to a house in the desert (and my mental stamina was picking up), I picked up strength training for the first time in 2 years.  I stopped after 1 week because I was crashing and also getting weaker by the day and knew it wasn’t sustainable.  2 days ago, I tried it again.  I started with bench pressing, which has always been the hardest on my body since I got sick (presumably because of my cardiac issues — ME/CFS physicans often say that chest exercises are the hardest anaerobic exercise for patients).  But I figured this would be a good test, so I took a bullet.  I felt strong, as if my muscles had not deconditioned, whereas in the house I was trembly and my muscles gave out rapidly.  I did 3 full reps of 10 with moderate resistance.  That night, the left side of my chest was really sore (again, the heart of the matter), but I got not PEM whatsoever.  The next day I went hiking, and the day after that, I still had no PEM and my chest soreness was abated so I really pushed it:

I did an intense 30-minute, max-out workout for the first time since 2006.  I did biceps, back, plus abs, all with max resistance.  (I also did all of this during the middle of the day, right under the sun with no shade.  A few months ago, I couldn’t sit under the sun for 20 minutes without feeling terrible.)  I slept like a baby and I’m not sore at all today, which I don’t understand at all, frankly.  It seems like the left chest is the exception here.

So it would seem that although my oxygen metabolism is still impaired (after 4-mile hikes, my legs are literally screaming with lactic acid and I have trouble sleeping at night because of it, whereas after 3-mile hikes I still have the soreness but not enough to have sleeping issues), my anaerobic metabolism is operating on all cylinders here.

My plan is to alternate hiking days with and weight-lifting days since I think they release toxins from different areas of the body.  What I’m really hoping to do is to combine each with FIR sauna because I’m still have a tough time sweating, but I need to free up some capital first.

In the meantime, if anyone has any theories on how oxygen metabolism would eventually restore, I would be really interested to hear them!

A Roadmap

I had an EAV scan today with a practitioner I’ve been seeing for several years now.  I wanted to see if he found the same clinical shifts that I’ve been noticing physically. I know many readers out there don’t believe in this diagnostic modality, but hey, it’s my party and I can cry if I want to.

Here are the notes from my session:

• Lymphatics came up as the most stressed organ, with liver and kidney next.  I’ll come back to this later.
• Heavy metals are still not a problem.  I thought this may not be the case since I had a metallic taste in my mouth the other day, but this finding correlates with all the negative metal provocation tests and EAV scans I’ve had in the past.
• Herpes viruses are the biggest pathogenic stressor.  CMV came up, but generally I only use EAV scans to identify patterns, not to identify species or strains.  This was confirmed by my testing strongest for Valcyte as the medication to address most of my stressors.  Raltegravir was next, with Amantadine following.  The last time I did an EAV with him, I was still living in a house and also tested the same medications.  At that time, Valcyte did not test at all for me, even while Herpes continued showing up as big stressors.  This would resonate with what Lisa has been saying for awhile: that while certain antivirals would be effective and generally a good idea during extreme avoidance, your body simply does not tolerate them when it’s overreacting to biotoxins.  Raltegravir coming up doesn’t tell me it’s a retrovirus, because it has anti-herpetic properties.  In any case, Valcyte tested twice as strong as the Ralt.
• Neurotoxins came up as a stressor (which makes sense with my on-again, off-again mental clarity and unpredictable sleep patterns out here) which are messing with my oxygen metabolism
• Aortic valve and left pulmonary valve both came up as stressed, but we think this is mostly due to the long-term effects of the disease.  CMV and strep showed up in the heart, but not significantly.  Magnesium Taurine was shown to help, so I’ll add that, but in general I think the heart will come around only after the toxins and viruses are addressed.
• In general, he remarked that it was obvious that I’d improved because all my stressors were in more balance than they’ve ever been (He uses a quantitative scale for this, but I won’t go into detail)
• Going back to the lymphatics, the clinical pattern indicates massive detox despite how great I’ve been feeling.  Perhaps viruses are part of the picture because as the toxins go, viruses go, but my body is beckoning for a potent antiviral the way Valcyte lit up.

Roadmap: I think it’s time to add Valcyte to the mix.  I have a year’s supply and have been waiting for the green light to go ahead, and this was just the push I needed.  My disease started with acute mono and I’m ready to come full circle with it now that I’m beginning to reverse the progression of disease that happened post-mono.  I’ll start a month of Famvir and add in abundant lympathic, kidney, liver support.  I’ll begin taking Shark Liver Oil to boost the WBCs (which will likely drop on the Valcyte) and ramp up my dosages of MB12 and Metafolin to maintain DNA/RNA synthesis.