My Open Letter to Doctors, Nurses and all Health Agencies about Lyme

I don't know if this letter will be given much credit, I am just an average individual who has been battling Chronic Lyme for 4 years.  ...

Tuesday, May 31, 2016

Day 20 - at the FAR Clinic

I have great new to share today!  Last night was a horrible, horrible evening.  Yes, that is my great news because I was told my symptoms yesterday are a sign that the lyme is fighting back.  The lyme feels attacked and is taking a last stance at trying to survive.  As rotten as I felt, it is great news to hear whats going on.

To date a lot of the treatments have been to recharge my immune system, lymphatic system and boost enzyme production.  The big issue is that my body lived with lyme for so long, it thought it was normal.  My body no longer fought it.  And when it did try to fight it in the beginning it drained my immune system and depleted my lymphatic system.  So they were done.  Everything had tried to fight the lyme, but they fought so hard they had nothing left and thats when the lyme went wild.

The treatments so far have been recharging those systems, refuelling them, waking them up and feeding them so they know to fight and have the energy to fight.  Some of the symptoms have been brought on by the treatments because they serve the purpose of making the body think there is a new disease to fight.  By default these treatments start to kill of some of the lyme bacteria as well.  But the really persistent ones remain.  And as the lymph, immune and enzymes starts to recover, your body starts to build strength and together with the treatments, they start to kill off the bacteria at a greater rate.

Last night, instead of pain, I felt a total body ache, swelling, tightness, a horrible headache and a confusion and blurriness, that took over my whole body,.  There was no one spot that was bad, it was just everywhere.  There is nothing to take for this, because most over the counter meds don't work, but also you don't want to impede the process.   After 19 days, my body is starting to fight the good fight all over again and I don't want to screw that up. So I slept and rested and tried to get through it and about six hours later, I felt things start to lift.  It sucked, I was exhausted to go back for treatment today, but it was worth every second.

When I arrived at the clinic today, they were very quick to say that that is a true sign the lyme is fighting back.  I like to think of it as, we have killed off the weak ones to date, and now the strong ones are resisting.  They don't want to go down easy, but luckily my whole body is back on board again and ready to take them down, with a little help from science and medicine.  I guess the game went to a while new level that I didn't know about and the good news is, I am ready.  They must have heard me yesterday when I said "game on"! If I am being totally honest, I didn't feel ready for battle when I woke up this morning.  But finding out what was happening sure can pick up your spirits quickly.

So needless to say, there is a pep in my step today that has not been there for a very long time.  I may have a crappy night tonight or a lousy day tomorrow, but those bastards are going down.  I know that now because their scared lol!  I like to think of them as running scared...causing havoc in my body, but in time, we are going to find each one of them and take them down. hahaha

And even more good news, my oxygen was at an all time high today, even during exercise.  That has been one of those things that was not up and down in this process, it has always been bad and a battle to try and improve.  Today, it spiked at an all time high and at one point was even as high as it could be for a very healthy person.  So despite the battle going on inside of me, my body is also showing clear signs of improvement.  Its just a good day!

My motto with every decision that had to be made about treatment this week is the number of days left, let's give it all we got.  Matt was debating what temperature we should go with hyperthermy because of my days away...then we said "4 days left..." and that was the answer.  Tomorrow will be 3 days left, lets go harder!

I have also decided that I seem to thrive with mild torture. Unfortunately, that is probably why I am in this situation.  I bring on challenges for myself that sometimes seems ridiculous to others.  I guess it is a sick and twisted desire to suffer in order to feel accomplishment - I don't know.  If I didn't challenge  myself to a 300 km hike in the bush by myself, I may not have Lyme.  But it is that same personality that is pushing me through these treatments and helping me thrive.  Its just who I am.  It has its perks and downfalls. I would like to say I will learn and change but its not likely.  But I can tell you this experience has taught me tons about taking care of my body.  Boosting my immune system and other functions beyond what regular medicine could ever imagine.  I will never take that for granted.  Much of what I do here will become my regular life.  And all I can't think about is what might be possible when I am healthy again.  I also hope to find a way to share this with others.  The information is so accessible, the possibilities are endless and the good it can do is immense.

UPDATE: to my "Letter to my Canadian Clinic" it has been 2 full business days since I sent it and no response...stay tuned.

As far as I can see from yesterday, the bastards and I ended in a tie.  I battled and they battled back.  But they revealed a lot of themselves and my body showed it is stronger.  So for one day, we end in a tie...but I have a couple of power plays coming up.

Bastards 7 - Kristy 11

Monday, May 30, 2016

Day 19 - Back at the FAR Clinic

It was an interesting journey to get back here but I am back and we are going hard.  We have decided that I will stay until Friday and the plan is to hit all the treatments with as much effort we can and make every minute worthwhile.  I am very excited about that and a little apprehensive. But I don't want to waste a dime, minute or effort of this journey, so here goes!

I had a great talk with Dr. Earl today.  He warned me that I am going to decline each day this week because the plan is to go hard.  And that I may go home feeling worse than ever.  But that it will all be worth it.  He was very pleased with all the efforts I made to keep up treatments while I was home and even along my travels.  He feels confident in my commitment for the crucial 3-4 months after I get home.  That he said will be the final predictor or how successful I am.  I think he thinks I am a little pigheaded or something lol.  I asked whether people come back routinely for "tune-ups" and he said he has had one that felt he needed to, but after they reviewed his program at home they were able to tweak it and he has been doing fine on his own ever since. Their intent is to do the intensive 3 weeks treatment to get your system back operating properly, your immune system functioning efficient and to have killed a significant amount of the bacteria so they you have a fighting chance at home.

He told me that after the crucial 4 months, you can start to back off on some of the treatments.  That thought in itself is very scary to me.  The thought of worrying about symptoms coming back is very scary.  I never, ever, ever want to feel the way I did a few months ago.  I never want to feel myself decline so quickly and know that I have no control over it.  I hated feeling so weak that I needed support and I hated my brain operating so basically that I couldn't function in my normal routine. So as much as I have no idea what symptoms will be gone forever, what symptoms might linger or what symptoms may return now and then...I know, that I have the ability to never be as bad as I was a very short time ago. That is power in itself!

And I can already tell you it hit me hard today.  I feel very drained and dizzy.  What is exciting about today though is that for the first time since I started this process by brain is much worse than it usually is.  Now, that might sound like bad news, but not with this process.  It means stuff is starting to happen in my head.  The one area, thats hard to beat and recover from, is showing signs of struggle.  That can only mean the effects of the treatments are having an impact on that area of my body.  This is so motivating to me.  My head feels heavy, dizzy, blurry and I cannot process very well, but I am happy! lol My processing is very slow right now.  I can't keep up to vehicle movements around me and busy places are worse than ever.  It used to feel delayed before, not I think I am about a full 10 seconds behind hahaha.  I can laugh at it because I feel my head is turning a corner and well, if it improves then I will be happy, if it doesn't I might as well learn to laugh...there are going to be some funny times.

I was told today that two people are trying to come but are stalled trying to put the money together.  Wow, that hits hard.  I know the financial burden this causes and I know the heavy thought and how it feels to know you are sacrificing your savings to do something you don't know a lot about.  It bothers me that treatment isn't available to everyone, American or Canadian.  And as much as both systems have their faults, that is beside the point.  If there is health treatment, information and experience to be shared, it should be available to everyone and anyone, willing to do their part.  I don't know the solution, I really don't. I had thought about this a lot when my dad was sick with cancer and the same thoughts have reared their ugly head again.  How can we be capable of so many things  as a country and the health of our people not be the first and foremost priority?  I just don't get it.

So I can sit and feel guilty or I can get healthy and share.  I think choosing healthy and share to be the best.  Its kind of like putting your oxygen mask first so you can help others put on theirs. I think a lot about how our fitness centres could offer programs that would also boost our immune systems.  I wish all health centres would enable us to do more to improve our own health.  A small pet peeve of mine that was supported at the clinic in Switzerland and with the Dr. in NY and now this clinic in Utah...we have to stop feeding our sick Ensure, Boost and all of those "drinks" that are doing more harm that good.  But the conversation is much bigger than that.  I just had to throw that in because it always horrifies me the more I learn.

A lot of Lyme patients have taken their battle politically and to them I am very thankful.  It was never my intention to go that route.  I am just not a lobbying type of person.  I find it very discouraging.  Yet, I know something has to be done because although there is awareness out there now, change is slow.  I know that our country and many others are not prepared for the actual numbers of people.  So they are also not prepared for the resources it will take to help them.  I believe we are years and years away from having a treatment regime for patients in Canada.  So I have decided this (based on questions and requests I have received from some of you): feel free to share this blog with anyone you think should know.  Whether it be another person battling lyme, media or politicians.  If you have been following the blog you know it is a complicated disease to explain, so it makes sense it is hard to diagnose. If it hard for the patient and the medical professional to sort out, it has to be hard for the decision makers and our leaders.  If any piece of this can help with that understanding, I am doing something.

So as my body starts to take on the bastards in my head, I definitely consider that a battle was won today.  I am in the home stretch.  I have been given an opportunity that I will not take for granted.  As this week gets harder I plan to not forget that.  I'm back in the game and ready to leave it all out on the ice...a little Canadian touch...Here we go!

Bastards 6 - Kristy 10 (and counting)

P.s. Thanks again to those at home for the motivating messages and reminders.

Sunday, May 29, 2016

Letter to my Canadian Medical Clinic

I have been wanting to write this letter for a while.  It has softened since the day I first decided I would write it.  I am trying hard to not put in anything that makes assumptions.  But I can tell you the doctor that day came across very flippant, patronizing and clearly wanted out of the discussion.  I remember saying at one point "I get the feeling you are not supporting this idea?"   I can't prove what was said, I didn't record it.  It is impossible to prove the tone and body language.  But with all the tests, specialists and doctors I have seen over this, I was never left feeling the way I did that day.  

All of the pieces in blue italics will not go in the letter.  They are just context. 

Dear Executive Director

I am looking for some assistance to seek medical support and guidance.  I was originally a patient of Dr. _ and I have to say I think she has been an incredible doctor very supportive and personal.  I have always felt quite confident under her care.  As you are aware she has been on leave and will be for some time.  This certainly plays a role in why I am writing to you.

After a very long hike in 2013, I became ill and reported an encounter with several ticks.  I had infections in my feet which Dr. _ treated and had to alter her treatment because of how it was affecting me.  She did a significant amount of testing, including malaria and Lyme disease.  She sent me to an internal medicine doctor for further investigation, although nothing was found.

From that point on, it seemed she was always seeing me for common issues but with a frequency  I was not used to.  She would even find problem I was not reporting.  She sent me for many tests such as pulmonary, etc.  She was always very understanding and took me seriously, which was nice.  She even once said "I sometimes think you downplay your symptoms."  She was right because I was  starting to feel like a hypochondriac.  I did my best to try to manage symptoms myself but many times it went on too long or just got out of hand, so I had to seek her assistance.

Early in 2015, I had called her after experiencing heart attack symptoms, to which she scolded me saying I should have gone to emergency.  She promptly had me see a cardiologist and he did multiple tests which were all negative.  "I was one of his healthiest patients..."

Later that year we had a discussion about what was left to investigate.  I even came in with a list of possibilities from a medical friend who had talked to me in detail and she had tested me for every single one.  We talked about me just taking things easy and trying to give my body a chance to recover.  She was also on temporary leave and since then went on permanent leave.  I took the fall and winter and watched my condition decline rapidly.  Physically, I was barely able to walk at times (I had completed a half ironman two years prior), breathing, anxiety, chest, joint and muscle pain, were among some of the issues.  By the start of 2016 I finally had to admit, my cognitive skills had declined so badly I was going to have to consider that I was not capable of doing my job.

Just as things had spun out of control, I met someone who had similar symptoms, was sent to the US and diagnosed with Lyme.  She had been on 5 antibiotics for 2. 5 years and had mostly recovered from her symptoms.  She encouraged me to do the same.  I contacted the US Doctor was encouraged to come down but to first co-ordinate with my family physician, for monitoring, blood work and prescription filling.  I called my clinic to see who I could see and was given an appt. with another doctor.

For my appointment I brought in all the paperwork from the US Doctor.  I understand this is a tough position to put a new doctor in, that doesn't know me.  But I encountered resistance that I did not understand at the time:
  • She could find very little in my medical history to represent how bad I have been?  I felt sure the 35 pages of test and specialist visits I sent to the US should have been enough.  But I also knew there had to be more in a paper file somewhere. 
  • She wondered why I had decided I had Lyme.  I had not, I was investigating every option to try and help myself.  
  • She agreed that I could potentially have something serious but that we would have to wait for more symptoms to develop.  Or we could repeat all the tests that have been done to date. 
  • I showed her my list of symptoms of which there were 50, which she would not look at.  I tried to describe a few but felt I was not making a compelling argument. 
  • I explained that the US doctor asked for the following baseline blood work to be done.  She said she would request some but not all.  
    • She would not do a test for celiac (which was fine because I was already a confirmed celiac and it was highlighted on the top of my file).  Good thing celiac wasn't causing all my symptoms though...
    • She also did not order what is the best Lyme test in the US.  Although, I had tested negative for a few Lyme tests in Canada, I now know that doesn't mean much.  I also wish I knew I could have order the US test myself. So it wouldn't have been so devastating when I couldn't get a doctor to order it for me.  
    • I also explained that the US Doctor would like her to follow my treatment, monitor with bloodwork and help with my prescription.  To which she responded " don't think I am going to do anything without the proper documentation to support it.'  This sounded reasonable (not sure it had to be said that way) but I was devastated to later realize that likely meant a positive Lyme test.
  • I asked if she would like the paperwork from the US Doctor to review which she would not take.  
  • She got up from the appointment said "I hope you find what you are looking for." and walked out.  

I left that appointment, sat in my truck and cried.  More than what was said, I was shocked at how it made me feel.  But the visit with the US Doctor that followed explained some of the challenges that Ontario Doctors have with helping patients with Chronic Lyme Disease or "hypothetic lyme".

I was also told by another Lyme Doctor that: indirectly doctors have been charged for treating Lyme in Ontario.  The prescriptions of many antibiotics, over a lengthy period causes them to be flagged and they are investigated and charged with something somewhat related but not directly the Lyme prescription.  Some have lost their license.  One of the best Lyme doctors in Ottawa will not take new patients because of being charged and challenged over this.  How sad. 

I was diagnosed in New York with two strains of Lyme, Borealis and Bartonella.  They also brought to my attention symptoms I was not aware of and had not even added to my list: tremors, paralysis on my left side and additional cognitive impairment.  So it should not be said that I was looking for symptoms, I was actually denying them.

My initial prescription was to taper the addition of 5 antibiotics with the support of 10-12 supplements to assist with the antibiotics and detox of the bacteria as it is killed off., for 6 -36 months.  I have never done well with antibiotics and by the addition of the 4th, I was no longer able to keep them down, daily. I worried about my recovery because this seemed to be the only solution (after three years of seeking and thousands of dollars spent).

I then came across a research facility in Salt Lake City, Utah that had modified a long standing alternative cancer treatment, that had been showing significant benefit for Lyme patients.  I am now going through that treatment and seeing improvement.  I will continue the treatments for a minimum of 3 months after returning.  It is crucial that I have a medical doctor at home who will work with me and the clinic and monitor my progress.  I arrive home in a week.

I am writing with two questions:
1) Is Chronic Lyme Disease something that your clinic will recognize?
I hope now with all the media attention it has gotten since I left and the Conference in Ottawa, that it will be.  The answer would be an indirect "no" if I asked this question weeks ago. 
2) Is there a doctor in your facility that would be willing to support me,  open to the concept of Chronic Lyme and willing to work with the Doctors in Utah at the FAR Clinic to monitor me.
I have been on 5 waiting lists over the last few months with potential doctors open to Lyme.  These doctors are either having to hide the fact that they treat it, are open to it or have a waiting list so long they can't get to everyone. 

I will be returning home from three weeks of treatment, a month of antibiotics before that and have been battling this illness for three years.  I need to find a doctor immediately. More than anything I plead with you to let me know if I should go elsewhere, so I don't waste time waiting for a reply.

Thank you for your consideration.


I should also reiterate the difference between Lyme and Chronic Lyme disease.  Doctors will treat immediately after a tick bite if they feel the patient is at risk.  This immediate treatment can combat Lyme easily and quickly with a regular term dose of antibiotics.  Chronic Lyme is Lyme that was either not treated effectively or at all and has surpassed an approximate timeline of 6 months.  The Lyme then morphs and binds so that it is not effectively killed by a regular doss of antibiotics.  Some of the bacteria cells that are hard to kill are thick celled ones that the antibiotics can't get through.  

What is also interesting is the proteins in the bacteria at this point bind and ball together and that is apparently why the type of blood testing that is done does not read or reveal it properly.  So the longer you have it the less likely you will test positive for it. 

As well, over time the bacteria hides in the yeast in your body.  So the antibiotics cannot find it.  That is why both clinics I have been to in the US are adamant about a zero sugar diet.  I can verify this is true because as my symptoms declined rapidly my sugar cravings did too.  I am normally pretty careful about mostly sticking with natural sugars, but at the end, I was seeking anything and everything sweet.  I was told the bacteria feeds off the sugar and yeast, so not only does it receive your symptoms at the time (mostly because it is not focussed on all your other organs and functions) but you then create a vicious cycle of relief and making a bad situation worse.  

Saturday, May 28, 2016

Day 16 & 17 NOT at the FAR Clinic

To say shit fell apart on our travels back to Salt Lake City is a major understatement.  Don't be concerned, its all good now, we are just not quite there yet.   Note to world: do not try to do medical travel on the Friday of the Memorial Long Weekend.

It all started when we had to connect in Toronto.  Our plane from Ottawa couldn't land because they only had one runway available.  When e finally did, I had no idea that security and customs in Toronto were such a mess.  They have added new computerized immigration document form and computerized passport inspections.  But of course those are new so they also have to be verified by humans.  Everyone is going to the US so there is a lineup for each step of the way.  Security tried to to rush us through, but that is a bit of an oxymoron in itself. And then then there was the asshole directing the lineups at customs... I won't dwell on all he did, but I swear it was on purpose. I just stayed focussed on getting to the plane.

So we ran, not something that is good for me right now, but we knew we had to do it.  We were only late a couple of minutes but the Air Canada agent was mortified to tell us it didn't matter.  They had to pull our bags off and they couldn't legally put us on a plane without our bags.  It was Air Canada"s "Inaugural Flight" to Salt Lake City.  They don't normally fly there.  I think when she saw the look of horror on my face, she knew this wasn't going to go well.  She wasn't sure when they had a flight next but it would not be that night.  I never used to be one to cry during challenging times, but I am also not myself these days.  And I knew I was going to cry.  I had to get back to the clinic for treatment at 9 am because the guilt of being away from treatment was waring on me.  I was starting to worry that I was degrading the effectiveness of the program.  The way it was explained to me that I was keeping things at bay while doing the treatments at home, but that the intensity at the clinic was where I would see real progress.  I really wanted to see real progress.

I walked away and tried to find a quiet spot (not really possible in an airpot), put my head in my knees and scarf over my head and cried uncontrollably.  I just had to get it out.  I was so tired.  I was tired of every step getting harder and the harder I tried, the harder it got.  This was just the straw that broke the camels back. I have no more energy to cope.  I knew it would sort itself out, but I just had to let it go...I was sick of trying to hold it together.

There really was not clear solution.  People had missed their flights all over, so there was an hour and a half wait at the Air Canada service desk.  I was on the phone with my forever friend (also an ex travel agent) on Friday night as she was trying to help me find an alternative way. At the same time two other acts of kindness were at work.  One man had approached Brian and said he didn't want to intrude but he hated to see someone in such despair (that was overreactive me) and could he do anything to help?  How kind!  He started searching flights for us.  Then the Air Canada lady came over and said she had asked her boss to take her off her shift so she could help us, because the service desk was so backed up.  There was this team of 5 of us trying to find an alternative way to Salt Lake City for 9 a.m. in the morning.
  • The only flight took us to Vancouver for midnight and we would have a 6 hour layover in the airport. Plus we wouldn't get there for 9 a.m.
  • There were not other flights by any airline except for Saturday night and there were 2 layovers and an insane travel time.  
  • The Air Canada agent then got a map looking for closest City's to Salt Lake and the man checking on his phone would search for flight options. 
  • They finally found a flight to Las Vegas, we would get in at 10:30 their time, 1:30 our time (Brian decided he was going to drive through the night, while I slept and we would be there.  That idea seems irrational now, but at the time motivated us to move ahead.  
  • The Air Canada agent said they would not be able to cover a rental car.  That was okay. I had one waiting in Salt Lake City, I called and changed it to Vegas, cancelled our hotel and booked another.  Done!
I had tried to call the clinic but they were closed for the day.  I did finally get speaking with the trainer and she called Rod.  He called back saying that it would not be a good idea to do treatments Saturday Morning after all that has taken place.  When you are fatigued and weakened they are so hard.  With every treatment you want to push yourself to be as effective as possible. It was then decided that we get some sleep and drive Saturday during the day and start treatments Monday morning and extend treatments at the end.  Rod is also the one who is adamant that deep sleep is necessary for healing.  That is why they monitor my sleep by the fitbit.  I was relieved and disappointed I really wanted to get back at things, but Brian driving all night was not a viable option.  That would prove to be truer than we realized once we arrive in Vegas. 

Once in Vegas the long weekend became really apparent.  A log wait for luggage at the airport (but grateful that ours made it). We were 45 minutes in line up for the rental car, another long line up for the shuttle bus to the rental cars. And of course a line up to park your car at the hotel and a line up to register at the hotel.  It was 4 a.m. our time by the time we entered the room and had not eaten in over 12 hours.  I was sick.  The running, the standing and trying to sleep on a plane had just seized my joints.  It felt great to lie down.  

The cruel irony about having to go to Vegas is, I was there once 10-15 years ago. After one night out, I was sick in bed for the remainder of the trip.  I used to joke that "vegas tried to kill me".  Now here I am sick in bed in Vegas again.  I am pretty sure Vegas is the least applicable place for a Lyme patient to be.  I have never been good with crowds or crazy, wild environments.  I don't know if it was the anxiety that intensified with Lyme or because the nervous system is so affected or maybe it is because of the fatigue and weakness, but you don't cope well with over stimulation. The last few years, I have had to avoid crowds, concerts and busy environments like the plague.  So why not go to Vegas!  I am laughing at this, its seems too ironic not to.

A few of you have already sent messages worried because there was no blog saying we arrived safely.  We have arrived somewhere safely and will be making our way shortly.  Good news is Brian always wanted to see the Hoover Dam, so its on our way.  Mind you, he picked quite a way to get there.

I really don't know why things happened as they did yesterday.  It seems unnecessary at best. But I do like the Joel Osteen statement "You can't expect the blessing with out the burdens." I really have to believe that all that went wrong today is just to say the blessings coming and its gonna be BIG!  So now after a little sleep, I can see that clearly.  I think this is all a good thing.  

Again, I say, I love meeting people who love their job and do it so well.  Carolyn, from Air Canada was one of them.  And to the man that helped us.  It is people like him that make this world a batter place.  If we could all be like that, peace could be achieved, I'm sure.  We got his email and will be thanking him someway, somehow.  Another one to add to the list to the pay it forward list.  

I was reading a thing the other day about serenity and how we are always trying to get things done, perfect, or over with so we can be happy or peaceful.  But that it really comes when we learn to find it despite the situation, circumstances or what we are waiting for.  The only way to find true serenity is in the here and now, despite what is going on.  That proved true today for sure.  I don't think I would call the feeling there is much work to be done.  But its a knowing that things will sort themselves out (after a good cry of course ;-).  

The other blessing in all of this is knowing that I have to be improving.  A few short months ago, I would not have been able to do this.  One of the obstacles in itself would have done it for me.  I didn't really need the full obstacle course to prove that, or maybe I did :)

I was also told by the clinic that I need to be setting things up with my General Partitioner at home.  And funny as this sounds, I don't have one.  I plan to send a letter to the clinic at home and will share that with you.  I think this situation is way too common for Lyme patients and goes against everything I believe the Medical Profession is about.  So I hope to find a solution with the letter.

The battle continues.  I don't think the Bastards are responsible for the set back.  But I do feel we won a battle I would not have a very short time ago.  So thats a win for me.  Bastards 6 - Kristy 9

Thursday, May 26, 2016

Day 15 - quick trip home from the FAR Clinic

Home for a rest - oh a taste of home is good for the soul!  I needed this.  I know they worry about people going home in the treatment and not finishing it off.  But that is not the case with me.  I came home for a reason and it was the right thing to do.  Brian and I head back tomorrow.  I'm ready for this last leg and I am very relieved to know Brian is coming with me.  Yes, you all heard that.  That is me Kristy Giles, revoking my independence. It rarely happens, but I have surrendered to it all.  I have needed everything that everyone has done for me and the list is endless.  I have swallowed my pride and accepted all your support.  So thank you, thank you, thank you...You will never know how much it touches me, daily!

And I may have some good news, I may have turned a corner. I am not trying to jinx it.  I do know of a few recovering patients that have just quit saying they are better.  These bastards, seem to like to attack just when you think you are getting better.  But I am going to stare them in the face and let them know, I am.  I also know for sure I have atleast one more set back to go this week.  Seems to be the standard and I have learned I am not going to get out easy on this one.  I am ready, I am prepared and I say "bring it on boys, cause we got a couple more battles ahead and I promise I will win more than you do".   See what a good taste of home country can do for a Canadian gal lol.

I think there is a lot of safety and security in my home because it is what I know.  It is clear that may biggest mental challenge is my lack of short term memory.  My longterm seems fine (or atleast I am going with that for now).  So being at home really works.  It also explains why my cognitive challenges were so glaring to me while away, its all new, every aspect of every day is short term memory.  I didn't do very well, look very smart, or feel very good about things.  All that is familiar at home, really helps.

Funny story about my short term memory at home. I may have mentioned this before, but if I am going upstairs, I have to repeat to myself why I am going, or I will have not idea once I get there.  We have all had that happen, right?  Well, it pretty much happens with every room I go into unless, I have something with me to remind me, or it is obvious when I enter the room.   So after getting home last night, I went into the basement.  Barely got to the bottom step and realized I hadn't reminded I stood there, stood there and stood there... it never came.  I called upstairs "anyone know why I came down here?'  Now thats just not a question you can ask anywhere.  My daughter's boyfriend asked if everything was okay.  I repeated the question.  He relayed to my daughter and son, who then relayed to my husband.  I stood downstairs and started to laugh as they all yelled down suggestions as to what it might me.  I know I shouldn't laugh, but you have to admit, that if this continues, it going to make for quite the entertainment at my house.  And as much as everyone tried...we still have no idea why I went down there.  It made me realize some really good things 1) I love my family and everything about them 2) It is a huge relief to be able to finally know why these things are happening to me and for the people around me to know why 3) Its important to start to laugh more...because I could be funny for a while...maybe forever!  lol

I also have some good information to share.  I have been working on replicating some of the treatments at home and so far that is going well.  I can reach the target body temp with a hot bath.  So.very. exciting.  Matt explained to me the other day (well, actually he has explained it three times - but it finally stuck) that you want to achieve a minimum of 102 and no more than 104 because in there it will kill the bad cells, but above 104 will start to kill your healthy cells.  I have gotten to 103.5 in the clinic.  But if I can maintain 102 when I get home, that is great news.  I have to watch my oxygen rate (pump oxygen when needed) and my heart rate.   I find if I keep the oxygen going and really try to relax (you will notice I said "try") I can get there on my own.  Very good news for the months after that I need to keep this stuff up.

The other things he explained is, that is why there is so much benefit to the PEMF (Pulse Electromagnetic Frequency) bed that I do the hydrotherapy on because it simulates a temp of 114 but because it is electromagnetically charged it will not kill healthy cells. So the persistent bastards are killed and healthy cells remain.  Who doesn't like the sound of that?!

I also attempted the enzyme workout.  Also a funny story with that...would have been a good video!  First I will explain the reason for the enzyme workout, before I forget ;-) . So how the science is, you walk into a gym, pick two machines, each one for your larger muscles groups: quads, chest, abs, or shoulders.  You pick a lighter weight, that will allow you to do atleast 20 and you do one set to your max, without warmup and you don't repeat.  Check oxygen and heart rate after. What you are achieving here is stimulation of the outer area of the large muscles.  You know how when you are trying to develop muscle you technically are tearing muscle and it is repairing itself?  thats how you "bulk up"?  Well you don't want to do that here. That takes a lot of energy from the body and we don't have energy to spare.  But if you do these exercises this way you just stimulate the out area of a muscle where enzyme production is high.  This will boost our immune system and help us fight this bacteria.  Without wasting needed energy on anything else.  Neat concept but other trainers might be horrified if they saw me do it in a gym.  It goes against most conventional methods of working out.

Then you head to the bicycle for 3x 20 second sprints.  Sounds easy eh?!  The old me would say, so.  Not now.  But heres why they do it.  With a very short warm up they want to push your legs to capacity, to boost the enzyme productions, but they also want to test your heart rate without maxing it out.  Then when its at a high level, they pump you with oxygen to recover.  They monitor your rate until it hits 130 then you repeat 2 more times.  Thats it - all done.  If things go as planned, you can be in and out in 5-10 minutes.  Not with us Lymies though.

Heart rate and oxygen are two things that many battle with, with the disease. It is just not something that may be obvious in a doctors office.  With light challenge it does become obvious.  Mind you I had every cardiologist requested test in the book and they found nothing.  So not sure why that is an obvious symptom int he states.  The first sprint I skyrocketed to 190 without even trying.  So I went down to 15 seconds.  A few days ago I surpassed 200, so I went down to 12 seconds, then had to go to 10.   My early battle was getting when you try to recover and get down to 130.  After 15 seconds, I would stay high and have a really hard time getting my heart rate down and recovering.  All of this is hard for me to admit.  It just doesn't feel like me.  So I really have to work hard on breathing, relaxing, and taking in O2, to try and improve the fall.  Also, you will remember, Lyme (like Cancer) is anaerobic(don't need oxygen to survive). Thats how cancer takes over - they suffocate the good cells, can live without oxygen (that good cells can't live without) and win over cells, one by one.  So if I can improve my bodies use of oxygen, I can kill more Lyme bacteria cells because oxygen  literally kills them. Easier said than done...but I am working on it.

Oh ya the funny story...I have a road bike with clip in pedals.  Picture me, attached to the bike, the bike come snatched from the stationary trainer (but is till attached to the stationary trainer) but we are not upside down and tied up.  So yes, I replicated at home but broke my trainer and my ego lol.  I think all of this will go much better in a gym.

Then the other thing I can do at home is this crazy ingredient, medical smoothie.  The basics behind it are as you do the things above and take in the medicinal ingredients (mostly natural) in the smoothie then you boost the fighting power of the good cells against the bastards.  I was told that the effectiveness of the smoothie doesn't work without treatments, because the good cells will best absorb  the nutrients when they are strong, oxygenated and the bad cells are weekend by 02 or heat. But it takes over 2 litres of smoothie a day, with a million ingredients to cut, prepare and blend...more exhausting than the workout.

So that's it in a nutshell. Thats allows me to do 4 treatments at home.  How empowering is that?!  So two more to sort which require machines...but I have an idea....

So I may be repeating myself, but I have no short term memory and I am using that for all its worth.   lmao I may forget a lot these days but I won't forget how caring, kind and generous everyone and I mean everyone has been to us.  I will never, ever forget what people have done, said and offered.  I don't even know how to explain it, but it has touched my whole family deeply.  So along with sorting out how to continue my treatments at home I am also sorting out how to give back, when I am better.  Its been monumental, how kind and caring people are.  I plan to pass it on....forever!

p.s. The images are empowering messages from home.  They always seem perfectly fitting!

Wednesday, May 25, 2016

Day 13 & 14 at The FAR Clinic - two weeks dow

I don't know whether to consider it a revelation or just a moment of pure honesty with myself, but I finally realized something.  I felt very selfish after my last post.  I mean, who is impatient with another couple of days of feeling crappy to feel good forever.  And that is where the real dilemma is revealed.  No one can promise you will be cured, healed or healthy again.

I have been pretty hopeful with this treatment.  It seemed like a better solution on my body, a better recovery timeline and better chances for healing.  The first two are clearly true, the last one has yet to be proven.  It hit me today as these crappy days continue to linger, that there is no promise that this will get better.  Well, I have to assume its gonna get better.  But no one will promise it will be over.  That promise I was looking for...which no one is willing to give.

Dr. Earl came to see me.  I was trying to be positive and was ready to tell him, this might be a better day, he said " I can see you are still struggling.  It is written all over your face."  Some things you can't hide even when you are prepared to but your big girl panties on lol.  He reminded me that he had told me I would not like them very much and that I would want to quit.  I do remember that and I remember thinking, that will never happen.  I realize now it is not about pushing through when it gets hard because I believe the majority of us would push through, if it meant health. What I think the real dilemma at this point is, is the uncertainty that this is going to work.

Trust me, its not that I am being pessimistic.  Its just that the symptoms are back with such a vengeance, it feels like they are planted within your body forever.  You can't imagine how in one week, it could get much better.  I sometimes can see how my physical abilities are improving despite the weakness and lethargy.  But my cognitive skills are so off that I feel like I sometimes am functioning as a child.  It is embarrassing, it is frustrating and incredibly discouraging because what if they don't come back?  They say they are the toughest symptoms for Lyme patients recover from.

It really all makes no sense to me.  Many times I considered my self lucky because I did not get as bad as some patients.  But yet, they talk about how the cognitive effects are the last to be realized.  Many patients are crippled in wheelchairs before they realize any cognitive challenges.  So why are mine so bad?

I have to travel home today for a day and come back.  Brian is going back with me and for that I am grateful.  He used to want to travel with me because of my comfort and confidence travelling.  Now I am happy he will be traveling to help me.  I mix up my airlines (wrong terminal, wrong floor), my flight - the people are really kind in Salt Lake City airport. I have to ask questions every step of the way, and ask them to repeat it, because my comprehension seems delayed.  I went to prepay gas, I looked at the pump number, relook before I enter the store and forget by the time I reach the cash.  A really good example is getting ready this morning, I have to write down on piece of paper what time I have to leave the hotel and keep reminding myself periodically.  Each time I look at the clock, I can't figure out how long I have without much effort.  So I start a paper count down - 45 minutes, 25 minutes, 10 minutes.  That way I can calculate it easier and don't panic each time I look at the clock.  There is always a way to cope but it just takes so much effort.  And it does let that doubt enter your mind.  Just what my brain needs is doubt when there already is so much slowing it down.

I do think in a week, I am going to write a blog telling you what has improved.  I have been warned that it won't be a dramatic improvement even then.  I was kind of hoping that I would be the exception on that. I have learned that there are no exceptions for me in this process.   They insist you have to keep up the treatments once at home.  Like, I told you before, I have most of that figured out except for one.  That will take a machine...which I understand patients have purchased since leaving.  They maybe should have told me that before.  There are smaller more portable options.  I am just having trouble determining if they will be as effective or not.

They have been really helpful with me travelling home. My treatments were doubled up yesterday one at the beginning and the remainder at the end of the day. It was a good way to practice doing it at home too.  They sent me home with a heart rate and oxygen monitor, oxygen, thermometer and the medical smoothie ingredients.  I have most of my supplements (forgot some in the hotel - shocking!!!) So it is a good chance for me to practice a few things. They worry I am not coming back, I guess cause this is the stage some will give up.  I couldn't imagine giving up at this point, because how would you ever know whether you gave up the greatest opportunity you could have been given.  I can't imagine that sitting on my mind - especially since I think room is limited up there right now lmao.  I will be back and ready to go on Friday - that I can be sure!

I asked about the longest serving, full treatment patient for Lyme and he is over the 4 month mark and doing great they say.  He is still doing all the treatments at home, which is great.  But makes me wonder if maybe you are never done this process?  I won't knock it because I believe at some point soon I will feel that life fighting Lyme is better than living with Lyme.  I just have to figure out the Pulse Electromagnetic Frequency treatments, if that is what it will take.

I have decided my worst case scenario is doing these treatments for life.  I can accept most of that, if it means my brain power will return.  So that is really not my worst case scenario, it is if my brain power doesn't return.  I remember my grandma always saying she only wanted to live as long as she "kept her marbles".  I have temporarily lost my marbles and am focussed on finding them.  I know the clarity is in there.  I had it for a day after I started antibiotics but it left and never returned and I had it for a day or two after starting treatments in Utah.  So I can only assume, it is there.

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I don't think it is by chance that I have received some really appropriate messages lately.  I am still positive and determined.  I don't think I am impatient anymore, this process will take time.  I do pray heavily that I will regain some brain power.  I can't imagine what kind of employee I would be like this.  So that is my weakness and my worry, I admit.  Yet, I still remain forever grateful for all the blessings I do have (including being bumped to first class - mind you, I think they thought I needed the extra care lol).  So with time, I anticipate a blog with much better news.  Till then I guess we will all have to be patient.

Monday, May 23, 2016

Day 12 at the FAR Clinic - the battle continues

Well...just when you are sure it can't get any worse, it does!  I am pretty sure today is my worst day.  I hope it is anyway.  They told me at the clinic they are secretly very excited for me, because this has to happen and has to be this bad, for them to know its working.  As shitty as I feel, that is great to hear.

The other sweet justice in all of this is seeing the clinical signs change as you feel worse.  So it tells me none of this illness was in my head in the past.  The days you can't get out of bed are actually because your heart rate is crazy, your blood oxygen level is low and your strength and abilities are gone.  It has nothing to do with motivation, will power or stamina.  Your body is simply unable. I was able to compare all my abilities and levels today to when I first came here and they were worse than ever.  And I agree, I feel worse than ever.

Tomorrow is a new day and it has been three crappy days, so I'm done.  I told my mind and my body that.  Mind you, I have told them a lot of things over the last three years and they didn't listen.  Funny I say that to myself, because lately it kinds feel like three of us fighting, me, my mind and my body.  Each one of us has good days, rarely together.  But its kinda like we are all trying our best for each other.  When my physical abilities are low, my mind works overtime trying to think and say the right thing to make the difference.  When my brain can't operate properly, there is a brute strength inside trying really hard to make things function.  All the while, me, I'm just pleading for it to all come together, so life doesn't have to be so hard anymore.  I just want to get on with life.

I am sure that last paragraph sounded a little off the wall, but there seems to be incredible conversations going on inside of me all day long.  I sometimes wonder if some of them come out in my outside voice lol.   I guess with writing that last paragraph, I let one slip out.  I may regret writing that but it isn't the first time I have said and done weird things.  After diagnosis, I was warned to caution visiting too many "chatrooms" with Lyme patients.  We all struggle with a lot of internal turmoil.  And as a result a lot of what we say and do can be a little out there at times.  I am sure that is the case with many aspects of this blog and I know some of it seems a little depressing.  I don't mean for it to be.  I just want it to be real so that someone else in my place won't feel so out of place.

Probably the thing I feel most guilty about is my impatience.  I was told two or three days, so I wanted it to be two.  Now its three and I am impatient and frustrated.  My competitive self wanted to accomplish the shortest possible time frame.  AND then I feel bad and think to myself, some people don't have the chance to get better.  So who am I to be impatient and frustrated.  I know I am getting better and I have been given a gift with this treatment.  So, the "three of us" have another little internal conversation and straighten each other out...and move on.

Dr. Earl came in today with a bit of a pep talk. I can only imagine that some consider giving up at this point.  You feel shittier, your too tired to do anything, let alone fight.  The treatments that made you feel better days ago, now are really hard and make you feel worse.  I feel okay that way, I have been really honest with all the staff and they have been very compassionate and honest lately too.  That I appreciate.

Matt is the nurse.  He of course is very comfortable with the science behind all of the treatments and will answer any question in great detail.  I listened today to him describing the treatments to a new patient and he has an incredible ability to get into the very fine details of what is happening with the treatments and in your body as a result.  Yet, he also has an impressive ability to say it in such a way that the general person can understand.  It also made me realize that there is so much more going on with the treatments, but I can't remember exactly what he said, it just made a lot of sense at the time.

Now Ashlee is very sweet, kind and knowledgeable too.  She is the nutrition specialist, but does so much more.  I love her ability to share her wealth of information but when I ask her a question, she answers it openly and honestly but also wants to look into things more for you.  She knows so much yet never appears like that and is always open to new things.  She often is the one checking on my symptoms and mental stability (poor girl) but she is very sympathetic and makes you feel really comfortable.

And then there's Lindsay.  She takes care of more of the logistics and patient intake.  I like her because she's very honest and straight forward.  I kind of like the situation laid out on the line for me and you can count on her for that.  We are probably a lot alike that way.  She is the one that warned me of the hills and valleys, and has repeatedly said, this bad bout is good.  I find often she says the things I need to hear - good or bad.

So I know I am in good hands.  It weird to think after three weeks you leave people who have seen you at your worst and then hopefully as some of your best. I also have to travel home on Wednesday for an obligation that I need to fulfil and will be returning right away.  It is not the ideal situation for treatments, but they are being really helpful so that I can figure out ways to continue thing during the day and a half I am home.  Or atlas not lose any traction.  And as luck would have it, it is also my son's 16th birthday.  So it feels really good to know I will be home for that and can see my family.  So this time in 2 days, I will have completed two full weeks of treatment, see my son and daughter for a quick visit and be returning with my husband.  Life is Good!

Sunday, May 22, 2016

Day 10 & 11 at the FAR Clinic

I think it's safe to say I've hit rock bottom if that is such a thing with this disease.  Strangely though, I don't think people are relieved and so filled with hope when they hit rock bottom, so I am sure that is not the right term for this.  I admit the Bastards did knock me down a peg or two this weekend.

Brian and my friends were trying to figure out who was going to come this weekend.  You have to know greater powers are at work when things like this happen.  Because as much as things have been up and down while being here, I have managed (as any pigheaded person would).  But I know this weekend would have been too much to handle on my own.  So I am very blessed they are here and they know me well enough to help while making it as fun as possible.  It really has distracted me from what is going on.

They told me yesterday at the clinic that this situation is pretty text book for Lyme recovery.  Although the timing and exact symptoms vary a little, this bad bout is likely to last 2-3 days.   The second day is coming to a close and I can say I am feeling more encouraged that discouraged.  Mentally, I have to wonder if this would have been too overwhelming on my own.  I really wasn't able to cope and do most things.  Elanda always said she would come get me when things got too bad, which is nice to know.  But its even better when you have good friends that just go with the flow, join you as if they want to lol, and make it all seem as normal as possible.  The last two days have had their moments, but crazy friends can make the best of many situations.

I am also told to expect one to two more setback near the end of week two or the beginning of week three.  Except, it is quite likely that it will not be as bad as this one. Now, that is music to my ears.  I can't even fathom the thought of never feeling this bad again.  It seems too impossible but makes me so happy all I want to do is cry.  That might be my hormones trying to stabilize from the disease (which I am told are often heavily affected).  No shock to me (or my family for that matter lol) but a little stability would be nice :-) 
So for the sake of other sufferers, this is what the worst feels like. The anxiety was building for days, so I knew things were "brewing".  The chest pain gets so tight and intense, your ribs and back hurt.  You feel you can't breath enough to get up off a couch.  The thought of taking a shower take the mental stamina and physical exertion of running a marathon.  And then you need to nap afterward.  But I think the tougher part is the joint pain.  If you don't move it stiffens and aches, but when you do, movement is painful.  It seems to take on major joints, like shoulders, hips and radiates into large areas all around.   You lose feeling and gain it back, headaches come on with instantaneous intensity and fatigue comes on and consumes you like a wave, with little ability to push through.   

Because today is a day off I was encouraged to replicate some of the treatments with home made version.  So we went hiking on a short trail.   The altitude sure kicks my ass, but the improved breathing after, is a nice feeling.  I had to stay hydrated and take my medical smoothies.  The hot tub helped bring up my body temperature but the real benefit was it relieved some of the joint pain for a while.  It is very empowering to find things to help yourself, and have a better sense of what will help or hurt.  The thought of a hike sounded like the wrong thing to do when I was feeling so lousy.  It took a lot to convince myself to do treatments yesterday and especially hike today.  I feel discouraged at times, because I know I could do so much more, faster, farther with the old me.   Then I think back only a few short weeks ago and have to feel good about how far I have come.  It may not feel great, nor is it easy and a lot of mind game comes in to play to get it done, but I did it! With great people around, a lot is possible. 
We had a very cool experience yesterday when we went to a restaurant that does meals for another Lyme doctor in the area.  It was an Asian Fusion restaurant and owner, Chef Hai, literally sat down at our table to find out what my requirements were and whipped up a special meal that not only worked with our favourites it complied with all the special requirements I have these days.  He also was quite versed in Lyme and beneficial foods for health.   It was an experience, lesson and adventure all in one.  I love meeting people who love what they do and he is certainly one of them.   
So I feel I am on the way out of a big hump. A sense of relief is in the air.  Mentally and physically there is a bit of a bumpy ride ahead, but the end is in sight.  I also know that I have great people at home and because of that I know anything is possible.  I really hope to be that person that conquered Chronic Lyme, not manages or lives be done with it.  And if I can do it, it means there is a solution out there for so many others.  How exciting would that be?! 
So the bastards may have one won a battle this weekend but not all because I brought in more recruits.  And they sure know how to fight.  So I will give them one, but we get one as well -  Bastards 4 - Kristy (& friends) 8

Friday, May 20, 2016

Day 9 at The FAR clinic

Great day at the clinic today.  Woke up with a horrible headache, a lot of pain and dizziness.  I got a message yesterday congratulating me on a lot of progress the last few days; but reminding me not to get discouraged as I am likely to experience some setbacks shortly.  How to kill the excitement lol.  Just kidding, I so appreciate the dose of reality because it's a long fall when you are not ready for it.  

Funny enough I am usually incredibly dizzy after hyperthermy, but today it cleared my head.  The fog over my eyes diminished and my ability to think was enhanced.  It won't last all day, but it is a nice feeling and a comfort that that type of reality is just around the corner. 

Had a great chat with some of the staff today.  The clinic is really try to find ways to make these treatments available to many more people; and many continents.  I can see the task is daunting but the research they have done here, needs to be shared.  The results are amazing.  Even with my constant change in symptoms, I feel myself recovering and my strength coming back.  And I have almost two more weeks to go!  

And since my friends are coming, and may uncover my dirty little secret, I am going to share.  I may whine and complain to all of you and thanks for the sympathy lol.  But there is one treatment that is really a walk in the park.  There is a pulse electromagnetic frequency bed that I lie on everyday and that's all I do.  I know I made it sound so tough here hahaha. It's really not that bad.  One pad focusses on troubled spots and the whole bed is hooked up to a computer that can change the frequency depending on what you are trying to accomplish.  Rough eh!? 

They are also very emphatic about good sleep.  If it is not going well they have natural solutions and if needed prescribe stronger.  The research shows that no matter what treatment is employed, your best healing is when you are in a deep sleep. They are insistent on each patient getting this deep sleep for as long as possible.  Science and medicine can be amazing but at the end of the day our body is the miracle worker.  Funny how we often don't let it do what it does best.  

The other thing they are relentless about is good breathing.  As you know I am hooked up to oxygen most of the day. Oxygen is the second biggest factor to killing these anaerobic cells (cancer and Lyme).  So breathing, being outside in fresh air environment and well, a good oxygen machine can do wonders.  But if we are not constantly making sure that intake is significant enough, how can we kill those cells off.  And I know much of my day is not spent making sure I am relaxed and breathing well...till now!  

So, it's a short message today, my friends are here!  Thy don't know it yet but I think they are coming to the gym, oh and maybe for treatments tomorrow lol.  

Thursday, May 19, 2016

Day 8 at the FAR Clinic

They asked me a few days ago at the clinic what my immediate focus was for healing.  At the time I said to restore enough energy for a normal day.  Yesterday, I was granted that and I think its safe to say today is quite similar.  We are definitely making progress there, even if there are still ups and downs to be had/

I also had another major breakthrough today and that was my heart rate.  The first couple of days it took me over 7 minutes to recover. This is not normal recovery timing like you do in fitness training, so the calculations are not the same.  But you will get the relative point.  The last few days have been sitting around 3-4 minutes.  But today after every effort, I recovered in 1 min 40 sec.  That is clear progress that no one can argue with and the Dr's feel this is incredible progress, so its nice to know these improvements are not just in my head.

There are quite a few things I have on my side in this venture:
- in general I was lucky to get help before I became as incapacitated as many Lyme patients become
- although the antibiotics kicked my ass, they did kill some of the bastards before coming here
- my body has muscle memory, so those enzymes are starting to come alive and kick in...finally
- restricted diets are the life story of a celiac, whats a few more things added to the list lol
- I like things warm (maybe not hyperthermy high, but pretty high) Brian will vouch for that
- I am really, really, really pigheaded (Brian might vouch for that too)

But together all of those things are really helping me through this process and without sounding overly optimistic, I think progress is really going well already!

The one thing I will give the doctor in New York is that she had the best handle on what this disease does, how it affects someone and what happens to you as your body fights it.  I am very grateful to have been treated by her because she knows it better than anyone I have ever met.  So many times I think back to the things she told me and know, had it not been for her, I would be very worried, scared and demotivated during this process.  She clearly is a leader in this field.  I think the medical profession in Canada could learn loads from her, if they would just listen.

So I am not telling you the rest of this information to scare you.  Things are going very well.  But if this is to be a log that may help another Lyme patient through this process, I need to be honest about all that is happening.  And because of the doctor in NY, I know this is to be expected.  The one thing she explained to me is that as the bacteria dies off in certain parts of your body, you often relive many of the symptoms and sometimes at a higher intensity.

Image result for seeing the silver liningThe paralysis in my left side is really evident today, even more than before.  I literally can't my arm the same as my right.  It is funny how it feels normal until you try and use it for something and it just doesn't cooperate.  So not a good day to buy eggs.

I temporarily lost feeling in my thighs today.  I didn't normally have that problem, it was my right foot and left shin that had lost feeling.  But it came and left today. Weird but kinda that it's gone.   Sure tells me stuff is happening...I picture bastards dropping all over the place, in my body.

My anxiety has spikes, pretty good spikes, but short lived, unlike before.  I never knew what anxiety really was until I got sick.  Don't get me wrong, I can be intense and anxious and always have been. I know some of you are chuckling right now.  Okay, so that is a bit of an understatement.  But it was absolutely nothing compared to how it developed while being sick.

Two good things that came out of this experience is that I have a huge appreciation for how crippling anxiety can be.  It can make the strongest person, completely incapable.  I also learned it is not just about changing your thoughts, it can come on in a flash and take over your whole body and there is very little you can do to even alleviate it the tiniest bit. Anxiety is a life changer that I have a little insight into now.  I wish there was something I knew to do for people that struggle with it, because I had no idea before.

In my attempt to deal with anxiety, I learned and tried many stress reduction techniques.  Not many solved the anxiety problem per say.  But I did start to realize it was not about one or another method, when you battle - you need to employ all methods.  Every aspect of your day needs to be about managing it, and the more help the better.  So I hope to continue to apply many of these and many more into my regular life, but hopefully they will be with the purpose of avoiding anxiety, not managing it.

The one side effect of recovery, that I do find hard to accept, is now my brain fog seems to be at an all time high.  Its bad today, worse than it has been in a long while.   I came here and used a gps for a couple of days and then was quite comfortable with where I was going.  Even in recovery you can wake up and that information is gone.  If someone says something to me, I have to sit and think it through a couple of times.  I literally can't always comprehend what they are saying. I really find all the mind stuff disturbing.  Lyme brain is a nice excuse once in a while.  But I would quite happily go back to blaming it on my blondness and know it is not quite as significant as it is now.  Maybe it is disturbing because I have heard from a couple of Lyme patients that the one thing that did not come back was their memory.  But I am not just any Lyme patient.  I am a pretty pigheaded one.  And those "Wood" genes are good for memory, so I will not succumb to that one easily.  Till then gps and voice recorded notes are my best friend.

So please don't be disturbed but this info.  It really is the treatments knocking the bastards out. I am sure of that.  And for today, I am rejoicing in the fact that I have made huge headway with my heart rate.  Breathing and heart symptoms were some of the most significant early symptoms I had.  And I was told sometimes the longest term symptoms will be the hardest to conquer.  So this is a good day in many ways.

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AND, two of my friends are coming to Utah to stay for the weekend.  Nothing more therapeutic than your crazy friends coming for a visit