A New Antibiotics Protocol

The medicines we must take to treat Lyme.  They can be interesting.

Whenever I get a new prescription for something, I usually go home and look up exactly what the medicine is, what it is used for, side effects, etc…

Here is my new list of meds I just started:

• Doxycycline
• Nystatin
• Azithromycin

I don't know, I just feel like a big petri dish after reading about all of the fungus and mold and other crap they use these medications for.  And, it seems as if this combination is a bit much for me.  I can't hold it in.

Here's a picture for you - imagine having severe bilateral sciatic nerve problems that run from the middle of your back all the way to your toes.  Now, imagine violently vomitting 10 plus times in a row from a sitting position hunched over a garbage can.

It felt like Freddy Krueger was ripping my taint out with each heave.  It happens when I sneeze in that position sometimes, too.

I'll leave you with that image.  I'm exhausted.

Next post - the research I've been doing on highly potent cannabis oils to treat Lyme.  I'm talking about replacing antibiotics totally if possible.  My body can't take 'em orally it seems.  The next step after that for antibiotics is not pretty (IV in heart).   Yeah, that sounds like a fun 2-10 years of living….

Sorry for the lack of replies and lack of communication lately.  Been a rough go, but I'm hanging in there.  I have some fun pictures from the girls' birthday to share when I have the energy to go through them.  They definitely keep me smiling.

The Repercussions of a Day Out of the House

Osu and I stopped playing outside when it got colder than -30F.  Colder than that was perfect for splitting wood - and good exercise!  My cabin - Salcha, Alaska circa 2004

It's called cabin fever.  You usually hear it mentioned by people who live in areas where long periods of undesirable weather cause the less adventurous to stay indoors, sometimes for months at a time.

I've never been a person to let bad weather stop me from doing much of anything.  Growing up, I got used to the constant "Hounds of the Baskervilles" type weather that often occurred in the Oregon Valleys sandwiched between the Coast and Cascade Mountain Ranges.

What?  It's raining and foggy and cold and miserable in the valley?  To the mountains we go, in search of that powdery, wonderful snow!  At least that was always my attitude.  If the snowpack was bad or we were in a shoulder season, the Pacific Ocean, only an hour away, offered up plenty of it's own entertainment in the winter.  

Ever tried leaning into an 80mph onshore wind straight off the ocean?  It's kind of fun!  And, if you fall, you just roll back into the sand dunes.  Watching 40 foot waves bash the headlands while the rain comes down in sheets at 45 degree angles, the ocean looking angrier than Sam Kinison in his worst coke rage, can also be quite entertaining when sitting next to a warm fire in a hotel room or lounge with a large picture window framing the action.  

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As the years wore on, I began to notice that it was taking me longer and longer to recover from activities, no matter what they were.  Weightlifting in high school, a required class for football players, ruined many a basketball game and track meet for me.  I was just too damn tired and sore from lifting, and I bitched about it constantly.

Later, going on a day-long hike or mountain bike ride would leave me sore and hobbling for a week.  Surfing in a thick wetsuit would leave me exhausted with each paddle back out to the break.  Heck, just an hour surf in board shorts wore me out so bad I'd have to go home and lie down afterwards.  I looked like I was in great shape,  but this is when I really started suspecting something wasn't right.

Chuns Reef, North Shore, Oahu - 2000 - I'm f'ing exhausted here - and on a smallish summer day  

Or that I was just a big pussy.

It started getting really bad when I moved to Japan, and it continued to get worse in Alaska (first stint) and then Germany.  I spent my first season in Europe skiing with a local club, going on monthly trips to various places in the Alps.  I would often ski so hard the first day, it would ruin the rest of the trip for me.  But that's just how I am.  I can't do stuff half-assed, but I am learning.  Kind of.

I spent a few of those years using Jaegermeister to lube myself up each morning - just so I could put my ski boots on.  The fucking pain I endured just to ski - and it was worth it most of the time.  I just wish I would have discovered earlier to head out on my own, away from the 'club pack' that insisted on skiing shit snow and icy hard pack and stopping every two runs for beers.  Fuck that.  That's why you have a flask and power bars in your pack.  And the snow is a lot softer on my body off that groomed shit!

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The whole point of this post is to illustrate that I often do things knowing that I will pay for them later. If I didn't, my life story would be completely different and really, really boring.  

I've always lived my life with a type of an urgency that others seemed bothered by, wanting to do and experience as much as possible as fast as possible.  I'm not going to bust out any spiritual mumbo jumbo here, but I definitely think I know the reason for this now - and why photography came back into my life a little over a decade ago.  

Every single trip I have taken, every place I have been, every hike I have made - they have all involved unimaginable amounts of pain and fatigue, but I felt driven to keep going, going, going.  My wife came into my life and jumped right into these adventures with me.  She's seen me collapse hiking down a mountain from exhaustion and pain, because I didn't want to take the gondola down.  We didn't take the bus up to the Eagle's Nest, high above Berchtesgaden - we hiked up there, and back down (and got lost….)

This past Sunday, I knew I'd end up paying for our trip up to Hatcher Pass, but I wanted to go regardless.  Needed to go up there.  I start feeling disconnected from the world the longer I spend in this room, even with the modern marvel that is the internet.

It's no replacement for seeing, touching, smelling and interacting with the world in person.  I especially seem to have a connection with mountainous landscapes, often commenting to my wife how depressed I felt when driving home from adventures in the Alps to the farmlands of Germany where we lived.

Yes, just two hours in the car, getting out here and there to take a few pictures, put me down for two days.  I think I was able to keep a pleasant demeanor during the trip for the most part, but holy hell, I was miserable the entire time.  I had a lot of problems holding my camera steady, especially with the big 70-200mm lens on, and quickly took that off.  

But, I now have these to enjoy.  And that's why I'm so happy I got back into photography.  I may have felt like shit physically during an experience or adventure, but something in my subconscious is also enjoying the time I'm spending out there.  When I go back and look at my pictures, this is what I tap into.  I don't remember how bad my body felt or how tired I was, but I remember the smiles and gorgeous scenery and the time spent with my family and friends, the people we've met…….

And, I think it's time to lie back down.  I never know how I'll feel from hour to hour, but right now, it feels like that 1000 lb lead blanket is slowly wrapping back around me, the veil dropping from above……..

thanks for reading.

Seizures and Migraines - There May be a Connection - for Me

When I first suspected Lyme Disease might be the cause of many of my medical woes, I started keeping a "Pain Journal".  I am now on the fourth iteration of this damn thing, and I think I've got it down to a format that will best work for me.   I'll post a sample below.

Since 01 October 2013, I wake up each day and mark down how many hours of sleep I may have happened to steal that night.  That column is filled with a lot of (1)'s and (2)'s.

I also have columns where I track other various symptoms, ones I think may help me find some overall patterns with my version of this disease.  I use a scale of 1-10. If a box is marked with a 10, it means it is the worst that that symptom has ever been.  Thankfully, those days are few and far between, but there have been a couple of 10's over the past few months.  I dislike those days.

My seizure last night got me to thinking;  are these episodes in any way connected to my pattern of intense, "I want to rip my fucking skull out" migraines that I seem to experience with some regularity now?

I'd never publish an N=1 study, but I also wouldn't blindly ignore a pattern as distinct as this:

it seems that having one of these Simple Partial Seizures will lead to a horrible migraine in the days that follow.  That was an easy pattern to pick out, and, it makes a lot of sense.

Another pattern I've noticed;  the seizures are starting to occur at shorter and shorter intervals.

A few years back, my mom came over to spend some time with my wife, who was preggers at the time, and I in Germany.  My neurologic problems had really ramped up by then, and I knew something was really wrong.  I kept dropping bottles and jars and pens and….. everything.  I was so weak on the left side of my body, I started having upper back problems, my neck was always stiff, and I was having mild seizures, the same type that now send me to the floor…..   I remember mentioning this stuff to my mom, and was even kind of scared to talk to her about it.

Thinking back, I remember one of the first seizure-type episodes that alarmed me.  It occurred shortly before I experience the first really intense migraine of my life.  It took about 6 months for another to occur.  Then it was 3 months for a few cycles.  Back in October, it was about 6 weeks between the seizures and migraines.  Now, it's down to four.

Keep in mind (reminder to myself, too) -  all of this could change when I start a new treatment protocol next month.  You have to keep changing things up to trick the bugs.  That's the strategy, at least.

This latest protocol has made me feel like Nick Nolte in his heydays, just lapping up every conscious-changing substance lying around.  I go from feeling drunk rage to the happy drunks to the "where the fuck am I" space-outs to depressive episodes to….. You know, like Nick Nolte.  Perhaps Gary Busey would be a better example here.  Or Hunter S.T.  You get the idea.

***Complete random afterthought - I'm sorry mom - I can imagine you were scared shitless as I drove down the autobahn, cruising at 110 mph, while eating snacks and holding conversations and playing with the music.  Probably should have told you about all the Neuro crap after the fact…..  Never even thought about it at the time.  Sorry if I have caused you any undue stress!

***** And, Another! I think I just figured out why my posts, and all my writings, are often so long, or just long-winded.  I try to intuit questions readers may have, and I then sillily try to answer all of them that pop into my head.   That flashed through my head earlier as I was writing, and I actually had this paragraph mid-post before re-reading it.  Holy crap am I having trouble editing…… Think I'll just hit post and then re-read when my eyes and head work better.

Thank You for reading!

My Complications with the Neurological Symptoms of Lyme Disease

I really don't plan on dwelling on the negative with this blog, but with this disease, you never know what you're going to get.  Usually, on my bad days, I'm unable to write anyway.  Perhaps, a blessing.

I do have days when I can get on the computer for an hour or two, though, where the rage Lymes, or the Lyme rages, or the bugs stage a coup of the personality I know as "me" and I never know what might come out after banging on the computer for a few minutes.

I'm sure many of my friends have seen these episodes on Facebook or even in person, where the smallest little thing can set me off.  I am conscious of what is happening, but there is nothing I can do to prevent the rage from manifesting itself in some form, usually in cutting and sarcastic remarks.  I can tear someone down with the best of them, and I'm not necessarily proud of that.  Afterwards, I feel horrible, and I have been carrying around guilt regarding many of these episodes from the past for years.

This guilt plays heavily into my daily life.  Although I've come to grips with many of my past transgressions, many while using alcohol to numb and mask the pain I was being told was all in my head,  they still bug me.  I've had more than one doctor ask me if I was bipolar, and I'm pretty damn sure I'm not.  I don't exhibit the classic symptoms.  This is just Lyme, the great imitator it is, causing episodes similar to bi-polarism.   Once the bugs get past the blood/brain barrier and into your spinal fluid, all kinds of weird shit can happen.

And each and every single day is different.  Each and every hour is different.

I can go from cognitive and aware to forgetting where I am or what I'm doing in a single heart beat.  It is as if a veil drops over your consciousness and everything goes dark.  You can see, but it's like being in a dream.  This dreamy feeling is often referred to as "derealization," and it can be very weird and disorientating.  Because of this, I can no longer drive.   I'd probably get lost anyway, end up in Canada chugging maple syrup and eating plates of poutine….

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Writing is always very difficult.  I've learned to deal with the crippling arthritis in my hands and wrists and elbows, damaged beyond repair from decades of horrible gout like attacks in my joints.  Actually, the medical cannabis helps greatly with this.  I have to use my vaporizer while writing or working on photos, or I am completely incapable of even using my mouse.

When the pain is too bad and I can't use the mouse or type, it's Audiobook or Netflix or Hulu time with the zero gravity chair fully reclined.  I can usually stay in that position for one hour.

Or, I lie on the floor and put on headphones and listen to podcasts or audiobooks or music or just meditate.  Over the past two years, probably 80% of my time has been spent this way - on the floor or in the chair or in bed.

Lying as still as possible is important.  It's what helps quiet my brain, it stops the vertigo, it simply straighten things out.  I'll have to take a picture of my chair / computer setup so you can see how I do this.  It's my "happy place", but unfortunately, the happy feeling doesn't last too long.  Usually long enough for me to do a few things on the computer, and that's it.  Then the back and fibro pain is too much to ignore.  No pain killer I have tried touches it, unfortunately.  You learn to deal.  You learn new normals often.  The evolution of toleration.

Here's the weird thing - the derealization is still there when I'm writing.  My own thoughts are being put down, but it's like someone else's hands are moving, like they aren't mine, but still responding to my commands.  I think this has a lot to do with nerve damage in my arms, neck and upper spine, but also with the derealization.  It's kind of cool, actually….

I've also recently started having what are termed, "Simple Partial Seizures", a type of seizure where the body shakes and convulses violently, but consciousness and awareness are maintained.  I got hit by one hard last night and was on the floor for over 10 minutes shaking.  They are almost like an Out of Body Experiences.  I could still calmly talk with my wife while it was going on, but I had not control of the shaking.  These I don't find too cool.  Quite disconcerting, actually.

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I'm not going to list all of the physical symptoms I deal with.  It's not pretty, but it's also just not necessary.  Those that care and those that know me know what I'm going through, all that I have been through, how bad it is, and how hard I'm working to get myself healed up the best I can.

The physical stuff is bad enough to detail with, but honestly, it's the mental aspect of this disease that takes the biggest toll on the soul of a person.   For me, it's what it's doing to my wife and my kids that most bothers me.

I can't express enough how absolutely amazing my wife is.  She holds this family together, and keeps the ship running above water, all while dealing with an almost fully disabled husband and twin daughters, who are a week away from turing two years old - and are already showing some of the 'terribles'!  Plus, she holds a highly professional and technical full time job working with a, thankfully, great group of understanding people.

There are many times when the girls are home when I am unable to even be in the same room with them.  Because my nerves are so damaged, even the smallest stresses or noises can completely set my system off.  I have to be very careful of this, as this often brings on crippling migraines for days and weeks.  So, I only get short bursts with the family, and it is so tough.  Me, hiding in this damn prison of of a room, unable to play with my girls or watch them develop.  

For instance, it's 9:30PM right now.  One of my girls has been sick all week, but is finally getting better.  However, she's been clingy and just woke up.  My wife came in the room with her while I was trying to write this.  My first reaction?  I got really, really mad, and I'm sure she saw it somewhat in my face.  At the exact same time, though, me - myself - my consciousness, whatever - is saying, "this is silly, you should be happy to see them….."

There are times where my outward appearance and feelings completely misrepresent what I'm truly feeling inside, and I now understand that this has caused for a lot of confusion between myself and others in life.

As I am going through the beginning stages of treatment, these symptoms are only supposed to get worse.  In some ways they have, but other symptoms have subsided enough to let me be a little more active.  I just feel drunk while doing most things, the left side of my body drags, and the pain in my back is unbearable at times, but at least I've been able to connect with some new people lately.

Meeting and interacting with others in a similar situation is always helpful.  For that, I am very thankful.

In conclusion, if you've ever thought I might be a little bit crazy, well, you were kinda right ;)

Photographs

Sometimes, when I get bored, I like to type in a search term in Flickr and then see how many pictures I have tagged with that term.  I've been pretty good about keeping my metadata up-to-date with my photos, but of course, there have been times when I just couldn't be bothered.  Still, I've been using Flickr for quite a few years now, and have uploaded close to 14,000 pictures, so I usually get quite a few hits that surprise me and make me smile.

Today, as I watch all of our awesome snow turn into mush, the shoveled areas of the yard turning to muddy ponds, I decided to put in the simple word, "ski".

Yep, it worked.  Put a smile on my face :)  Click the caption below to see the gallery on Flickr.

Shimokura Ski Area - Iwate, Japan.  Bringing a little Aloha to to Spring slopes

Well, I must start getting myself cleaned up for my trip to the doc in an hour.  Gotta drop off two gallons of chilled urine.  That's not something you get to type every day…….

I hope everyone is well.  Cheers!

It May Surprise Some: Why I use Medicinal Cannabis

I wanted to make a post as to why I do use medicinal cannabis instead of regular, western prescribed medicine to treat some of my conditions from Lyme Disease.  The whole story is a really long one, so I'll try to keep it brief for now, but will definitely be expanding on this.  I also want to share what I find works for me, healthy ways to ingest cannabis, etc...
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the short of it:  narcotics nearly killed me, along with blood pressure and cholesterol meds.  OTC pain remedies nearly destroyed my liver
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On my really bad days, I experience more physical pain in that day than most people will experience in their entire lifetimes.  I'm not going to list what I suffer from right now, but it is an extensive list.  A list that may even make Santa jealous.  This pain I suffer from has mostly been caused by 30 years of  undiagnosed Lyme Disease, spurred on by probably hundreds of injuries over the years.

It's a self-feeding loop where any injury is seen as advantageous by the Lyme bacteria.  The injury is a place to live and breed and bore through the inflamed tissue.  Here's the bitch of it - Some of the Lyme gets to the injury via white blood cells, the same little cells that are headed towards the injury to try to fix it.  Lyme's a sneaky little bastard, it is.  This process also makes the occurrence of injuries much more prevalent.

I once had my right ankle x-rayed, after yet another sprain, and the doc asked, "how many times you broken this thing?"  "None", was my answer.  I just thought I'd sprained each of my ankles very severely like 20 times.  Nobody ever bothered to x-ray any of them until much later.

Anyway, if you've ever lived in Europe and have been treated by Euro docs, you know that they do not give out narcotics like candy as they do in the US.  In fact, they frown upon the use, only using narcotics for the terminally ill and life-long chronic pain patients.

I was deemed bad enough by a few docs to be one of these life-long chronic patients and was handed a 'script for enough pills to easily make 20k selling them on the streets in Nuremberg.   These ended up being the pills that I used to make the flight back to the US when we finally moved last January.  The pills were morphine and something else, a combo not used in the US.  They were strong as hell, but needed, as I had to make that flight to get somewhere new and hopefully figure out what in the hell was going on with me.  The German docs had signed off on me for life, so…..

Once in Anchorage, I visited a doctor at one of the local pain clinics.  When I left Alaska 7 years earlier, these pain clinics didn't even exist.  Now they were on every freaking corner, it seemed.  I knew right away that this place had no interest in really helping me.  The guy just threw me a big 'script for Oxycodone and some muscle relaxants and said check back in a few weeks.   Again, they just wanted me to live masking the pain instead of trying to figure out what was actually wrong.  No money in fixing me, I guess…..

I ended up in the ER one night last February with severely impacted bowels.  So bad, I could have died that night.  All from the narcotics.  I had complained twice to my doctor about this, being completely ignored both times.  I have eaten strict Paleo for nearly four years.  I only drink water.  A lot of water.  And I was taking and eating tons of Fiber.  And I still got that constipated.  It's what long-term narcotic use can do to you.

I wish I would have started using medicinal cannabis years earlier, damn the laws.  It works so much better than any pharmaceutical pain med for so many different conditions.   It is not a panacea, and I hate the stereotypes involved, but dammit, it works.  We moved back to Alaska from Europe just so I could legally get a card to see how it would work for me.

Best thing I've done so far.

One of these days, I'd like to address some of the stereotypes that are still be thrown about regarding marijuana and the people who use it.  Lazy people are lazy people, regardless of what it is they chose to fill that lazy time with.

Junk food.  Beer.  Video Games.  TV.  Pot.  Whatever.

I'm tired of hiding the fact that I use something incredibly healthy, that really works for my situation, and has improved my condition enough that I'm up typing this right now.  I still see so many negative connotations involved with cannabis use, most of them simply not true or just pure and blatant propaganda.

You know, yes, I guess it does bug me if someone looks down on me because of how I choose to treat my disease.   They are not me, and I don't expect to have any decision in their life's choices either.  So far in my lifetime, I've quit drinking alcohol, quit chewing tobacco, and quit eating processed American shit food completely cold turkey.  I also don't watch any cable TV and don't play video games.  I just find it ironic when someone, usually someone who is addicted to everything I've listed above, looks straight at me and tells me I'm being unhealthy.

I would be happy to answer and questions anyone may have.

Memories of an Old Friend

I was about 15 when my physical pain started becoming an every waking hour occurrence.  At the time, the pain was quite migratory, usually moving around to areas that I had previously injured.  Say, a sprained ankle or a jammed finger, or a twisted knee.  I remember my high school trainer getting so frustrated at times, him never seemingly able to help, me in his office every single day with new and old complaints.  It became a routine before and after all games and practices;  ice, tape, go play / cut the tape off, ice and heat, ice and heat.

I think Kevin and I spent two full years playing this game.  Since I played sports year-round, there weren't many days where we didn't see each other.  Man, I remember complaining constantly about lifting weights and how sore it would make me, how I never seemed to recover like everyone else, but how I was forced to lift regardless of my pleas.  During my senior year, Kevin actually played a part in getting those requirement lifted for me during basketball season.  I don't think I ever told him how thankful I was for that.

After graduating and leaving Roseburg in the rearview mirror, I never really looked back.  I regret that to this day.  As I get older, memories and scenes from my past play out while I'm lying in bed.  When these incidents occurred in real life, I paid them little heed.  I was always looking ahead, wondering what was around the next corner, chasing that next adventure

But now, as I see these scenes from my life replay in my mind's eye, their significance become apparent.   It's hard to describe, but one such scene played out recently after I learned just how sick my old high school trainer, Kevin, had become.  I kind of look at it as a recalled memory while in a deep meditative state, something I do often since I spend so much time in bed.  Anyway, this was the incident I relived;

My mystery injuries were occurring with such frequency, causing Kevin to became concerned enough that he took time out of his day to take me to the hospital for ultrasound treatments.  Although the sessions didn't end up helping me much, the time spent with Kevin most definitely did.  It was just so nice being around someone who didn't think I was crazy or a simple hypochondriac.   I could just tell - he believed what I was telling him, and I knew he wanted to help.  He was just that kind of guy.
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I ran into Kevin at Cavitt Creek one summer while up there cooling off with some friends.  This must have been only a year or two out of high school, because I still wasn't 21 years old.  But, hey, it was hot, it was summer, and we wanted some beer.  And Kevin and his friend had a cooler full.

Of course, we asked, perhaps even pleaded, but our requests were responsibly turned down by these stand up adults.  Only one thing to do - trick them!

If you are familiar with Cavitt Creek, then this will make sense:  We were sitting up at a picnic table next to the "jumping spot" where the sign is that says "No Jumping".

So, after being denied beer, and with the temperature approaching Pam Anderson melting ferocity, we decided to do a jump into the water below.  My idea was to use the table as a launching point to jump over the fence, actually something that I'd done many times before.  So, I do this, and my next friend does it, and then the next.  By the time friend three is in the water, I'm just about to the shore, ready to climb out of the water.

But I pause.  I turn around start heckling Kevin and his friend.  Telling them how good the water feels.  Telling Kevin how sexy he'll look with his shirt off.   Eventually, they've had enough, it's hot as hell, but they say they won't jump from the table, just the rocks.

"Fine by me", I say. (In my head - this will buy us more time…..)

I wait for Kevin's friend to jump.  Then Kevin.  Then I ran up the stairs and stole a beer for myself and each friend.

Thanks, Kev.  Best Beer Ever
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I truly believe that each and every one of us gives off our own energy signature.  When we interact with others, we can absorb both their negative and positive vibrations.  Although it's been over 20 years since I last interacted with Kevin, that energy I gleaned from him has stuck with me to this day.  It always will.  And I KNOW it will for so many other people that he has cared for and helped.

I don't really know how to end this, so I'm just going to say

Thank You