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.  ...

Saturday, December 3, 2016

Its Not Just About the Lyme

It may sound crazy to you but there is no one in this world praying harder that they will be sicker than sick - than me.  Who would wish that on themselves...well, me for one.  But for a very good reason and future health being the main one.  Let me explain.

I finally have a Canadian doctor working with me that is part of the ILADS group.  That stand for International Lyme of Associated Diseases Society.  ILADS who promotes understanding of Lyme and its associated diseases and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.  They hold conferences and share cutting edge research and information among themselves to treat Lyme but also similar illnesses.

I guess I'm not sure why every general doctor would not want to be involved in this if Lyme is becoming and epidemic?  Regardless, I have finally been accepted by a medical doctor in Canada who is part of this Lyme literate group.  It is the same group that my doctor in NY is involved with and the naturopath in Ottawa.  So everyone is on the same page.  But the Ontario doctor gives me access to the Ontario Health System and is obviously much more accessible geographically.  However, the wait has been a year and she is so booked up it is 4 months between appointments, so I still need to get my family GP on board, who hopefully returns next month (fingers crossed - she has been away for a year and a half of this journey).

So, in my second visit, I learned that there was new research being shared.  It was not published yet but had been presented at the last ILADS conference.  The finding was that there is a parasite wreaking havoc on the babesia strain (one of the co-infections I am still battling with).  You may remember it being referred to early on as "that bastard".  It affects you neurologically, overtakes your blood and nervous system and is very, very hard to attack.  You may recall the thick/double walled cells it develops and the biofilm that surrounds it that makes it hard for the antibiotics to penetrate the cell.

Well, the finding is that the biofilm is actually created by a parasite that infiltrates the same cells as the babesia.  I was actually shown a picture of the cells with the parasite within (microscopic pictures of course). Pretty cool when a doctor involves you enough to show you that.  So what this requires is a medication added to my existing protocol and a few more supplements.  The protocol I am on is exactly what both the US and Canadian doctor recommend for me.  So, the addition of an antibiotic  that I rotate with the existing one, should attack the parasite.

Its been interesting to me, because I am part of a forum where a Lyme literate doctor, in Calgary has been one of the leading experts in Lyme but seems to specialize in many chronic illnesses and mysteries.  He often refers to many parasites and how they are the problem or add to the problem.  It has shocked me how many parasites are out there and can wreak havoc with our health.  It seems to me if that is a major cause of many of our mysterious illnesses, we are actually doing worse than 3rd world countries who seem to have a handle on common parasites and treat accordingly when they can.  The trouble is sometimes they dont have the means to.  We can - yet we dont go there????  Anyway, I would recommend to anyone in the west with a strange or chronic illness to check him out.  I think his wait time was three years but might be closer to 1 now.  He seems to be amazing at investigating the multitude of reasons why an illness is going under the radar.  He has been known to direct many people in the forum in the right direction.  He has an incredible sense and understanding for the struggles of thousands. He has a lot to offer if more doctors would listen.

I am told as I add this med, I will get quite sick from the die off.  But in one sense the sicker I get the better it is working.  So like I said, "no one is wanting to be sick more than me."  It seems silly to wish that but continues to be a pattern, in this recovery.  It is interesting this recovery.  Its a long road and no joke when they say the recovery is almost worse than the disease.  I really thought by this point life would be back to normal.  I am so happy it's not where it was 10 months ago.  I just became so consumed with healing and life being normal that I have dont nothing but since then.  But I guess I still have a piece to go, so my be my time to reflect and adjust my mindset.

I am trying to let go of controlling this outcome.  I need to live despite where this illness finally takes me.  I heard a speaker once when speaking about her cancer remission say she does not say she overcame cancer, she says she lives with cancer.  She said that way there is no fear if it "comes back" or what it is doing to her.  She chooses to live a happy, healthy and successful life with cancer.  I didn't like that thought process at the time but now understand it.  When I said earlier that I was going to win the war with these bastards, it meant I was going to be Lyme free some day.  I realize now the war is not won when I am Lyme free, the war is won when I live a happy, fruitful, successful and quality life.  And that I am going to do.

So here's to much sickness ahead and much healing further ahead.  I still am on route to win the war...those bastards are not going to get me down.

Monday, November 7, 2016

Back on Track - Fighting Lyme

I think it's fair to say the last few months really challenged my motivation to win or even keep up this battle.  I believe it is mostly because I had imagined life being fairly normal by now and it has been anything but.  In one aspect my recovery seemed to be going backward all of a sudden and it seemed to be a train I couldn't stop regardless of all the tools I had at my disposal.  It was out of my control, so secretly, deep inside I wanted to find a reason to give in.

Maybe it was the doctors disagreeing on the meds or the promises of new doctors that I would be better when I only got worse.  Maybe it was the meds and supplements that kept adding up and only making me sick each time I took them.  Maybe it was the insanely strict diet, the expensive organics, the time-consuming specialty recipes and smoothies that didn't make a difference.  Or maybe it was the depleting energy that didn't allow me to do the exercises and routines that I faithfully did month after month only adding to the depleting energy.  The anxiety that was becoming insurmountable when I thought it was improving.  I just started giving up and making bad diet and health decisions then adding to my guilt...but I am back!

I think sometimes in life we have to fall off the rails, to figure out the track we want to be on.  It made me reevaluate a lot.  With Lyme you try everything, no one knows the answers but people know that they tried these 20 things that seemed to help. You never know which of those things helped but somewhere in there may be a solution, so you add it to the pile.  And after a while it all seemed to be too much, your days, life are spent trying to get better and all you seem to be doing is getting worse.

I literally said fuck to it all....well partially on doctors orders because they could not figure out what was causing my irregular blood tests.  Admittedly, my fatigue increased, many symptoms started to return, depression seemed to settle in and I sat with that for a few days to see what would happen.  And then it happened.

I slowly started to add back a few things that I thought might be helping and really evaluated the others.    I cancelled any obligations or appointments.  And consulted with two main doctors on what I should do about the meds. I even saw some friends laughed and acted like there was nothing hanging over my head.  It was great and as I sit here today:

I start my new protocol of meds and feel convinced this time I can manage them better with all the little tools I have learned.

I am only taking 8 supplements (twice a day) instead of 24 and am convinced these are the ones making the difference.

I am slowly starting back into the routines:

a) I walk outside every day, and work on my breathing. There is no better way to expand your lung capacity and improve your oxygen content than by consciously working on your breathing in a clean air environment.

b) Do immune boosting exercises with oxygen therapy ever second day.  Its a fine line with these exercises to not go past your adrenal capacity.  You want to boost the enzymes that support your immune system but maintain your energy resources. Its a very cool scientific approach to a workout.  Which is also very beneficial to helping women maintain better hormone balance _ who doesn't want that.

c) I do a hyperthermy bath every second day - body temp to 102 degrees.  I gave this up after I had finished the 4 month protocol. I also found it hard to do as I got sicker on the meds.  But I believe this practice to be one of the most significant factors in killing off the bacteria I have decided to keep at it.  It seems to be when I see the best results.

d) I drink a 30 ingredient medical smoothie 5 days a week - made from scratch
- Make a vegetable juice drink twice a week

e)  I drink lemon water every morning to help detox what my body fought off through the night.  I have sweats and chills most nights still.  Means my body is working hard to fight and detox.  You want to make sure you get rid of what it did first thing in the morning before you do something that dehydrates it or bogs down your digestive system (that's why fruit is helpful too).

A few new things that I am adding that should help with the meds and detoxifying the bacteria as it gets killed off. This is key and is vital to being able to handle the meds and manage the side effects of the "herxes - die off".

1) Drink dandelion coffee (natural and caffeine free).  Regular coffee makes you dehydrated so it will not help eliminate bacteria or any toxins that your body is trying to get rid of.  The caffeine is likely intensifying the anxiety, so definitely want to minimize that.

For a specialty drink, I sometimes add french vanilla stevia with coconut cream to the dandelion coffee.  I have come to love this but it may be because I have not had something prepared or refined sugar in 7 I wouldn't know better.

2) I eat natural fruit in the morning.  I even have to be careful with the amount of fruit I eat, even natural ones feed the yeast in your body which feeds (and hides) the Lyme.  This is hard for me.  So I limit to breakfast and one snack.  My two favourite breakfasts are:
- berries with organic natural yogurt (this supports the good bacteria I need that the antibiotics are killing off of with the Lyme).  I sometimes add some natural vanilla since the taste can seem really blah at times or I even as a small bit of raw honey once in a while.
- I have found the PC organics peanut butter to be as close to the processed sugary brands we are used to.  It doesn't separate like most natural ones do.  I often eat this with banana chunks.  A little bit of sweet with an awesome source of protein.  BTW peanut butter should have peanuts as the only doesn't need to have all the added stuff to take away from what a great food it can be.

3) I drink lemon water every morning to help detox what my body fought off through the night.  I have sweats and chills most nights still.  Means my body is working hard to fight and detox.  You want to make sure you get rid of what it did first thing in the morning before you do something that dehydrates it or bogs down your digestive system (thats why fruit is helpful too).

4) My goal is to eventually be able to apple cider vinegar shots.  I find the smell horrible and it makes me sick, but they swear there is no better detoxifier in the world.  I found a recipe that masks the taste and smell and will do this until I become more courageous.

- warm water
- 2 tbsp apple cider vinegar
- 2 tbsp lemon juice
- 1 tsp ground ginger
- 1/4 tsp cinnamon
- 1 tsp raw honey (optional)

On top of this I am also taking 3 supplemental detox tonics.

5) No news or Facebook.  Although it has been helpful to do research and belong to a medically led forum on Lyme, it is also really discouraging.  People are really suffering and the medical system is cruel and impossible on so many levels.  I find its too much to take right now. Maybe when I am better, I can better advocate for these people.  I first must focus on all thats good and when I am better and can focus on what still needs to be done.
So there covers, just the start of my day.  Start of my next round at healing.  Its a new day.  I feel good, the changes are good and so it begins.  Here I go!

Friday, November 4, 2016

I'm Not Gonna Lie...Lyme Sucks!

I'm not gonna lie...this is not how I pictured this healing process to go.  It doesn't fit with my muscle through pain attitude, get over it and move on.  It lingers, it gets worse, it hits you when you think you are doing better and gets better when you finally accept it won't.  Its a roller coaster to say the least.

I'm not gonna lie...the recovery is worse than the disease.  The saying is true.  Except for the fact where the disease will eventually take you.  I now know why the girl who helped me get help, did not show the same relief as I felt with the diagnosis.  She knew all too well, the endurance test that was ahead of me.

I'm not gonna's lonely. I know I have said this before. But you get sick of hearing yourself talk about it, so you can only imagine what it is like for others.  Yet, you feel the need to explain to everyone why you are not yourself, why you let them down, why you think you can do something and then find out you can't, why you look okay, but are doing horrible inside.

I'm not going to lie...I wanted to keep a brave face, but the effort is wearing.  I wanted to smile, remain motivated and positive that I could do this.  It just goes on so long.  One day, you are sure you are going to beat it and then next trying to picture your life hurting, feeling this sick and tired forever.

I'm not gonna lie...I waffle in my posts by trying to make people feel better and making sure I give an honest impression of how horribly frustrating this disease it.  All I can say is no matter how much I write, explain and describe, there is no way to explain the turmoil and fear that goes on inside the head of a lyme sufferer.

I'm not gonna lie...after I say something like that above I feel guilty, because there are people at greater risk, and Lyme sufferers far worse than me.  I am grateful and so blessed. Yet on the really bad days it seems unbearable to imagine keeping this up forever.  I guess I just assumed the bad days would be over by now and wonder if they ever end.

I'm not gonna lie...I do things but the effort is sometimes ridiculous to even describe.  Some days, I do things in 10 minute intervals, because my breathing is that of a 90 year old.  I can sometimes take three naps in a day, trying to accomplish something in between.  It can take me all day to get the mental and physical strength to make supper, and then feel shame that is all I did.

I'm not gonna lie...not every day is a bad day.  Some days, I feel great (and realize that's only relative). Some days, it can turn around in hours and become a better day and some days, the bad days go on for days, for no reason and you just want to give up.

I'm not gonna lie....I had to lose all my physical progress with the Utah treatments to take the meds that will hopefully eventually help my heart and head.  They wore me down, so I am more fatigued and physically weak than I have been in months.  It is so hard to lose one major thing you gained, to resolve another...two steps forward, one step back.

I'm not gonna lie...I am like a kid who doesn't want to take her medicine some days.  I am on so many supplements, that I take handfuls at a time.  I want to gag.  And many times I am taking things that I know will make me sick.  That is hard to do day after day.  I had to stop my one medicine because my blood test were showing problem areas.  I was relieved because they made me so sick when I was on them every second week.  But then I started to get worse and am now relieved to start back.

I'm not gonna lie...I drive myself absolutely insane every day trying to figure out if I am worse because the meds are fighting the bacteria or if it is Lyme getting worse.  I wonder if I ate the wrong thing, should be taking or not taking something.  If I should go back to old treatments, do more or less with supplements, doctors, try new options, stop old ones. I don't know whats working and whats not, if anything is at all.

I'm not going to lie..the chance of recovery I am told is zero.  Yet, I was determined to disprove that.  I am told remission is possible.  So I am going with that. Somedays, I would even forgo remission, if I could just know what each day was like.  But then I smarten up.  The fights not over, it's just harder as you get weaker and you do get weaker, in mind and body.

I'm not gonna lie...people are suffering far worse than me.  I belong to a doctor supervised medical online forum and the stories are horrific.  It is also glaringly apparent that we are so far way as a country from getting even the slightest help for these people (diagnosed and undiagnosed) it is truly demotivating.  The stories of the game that the CDC, testing, doctors and government are playing is disgustingly appalling.  The chance of this resolving in decades is close to impossible.

I'm not gonna lie...I was appalled at how little the new GP covering for my doctor (who I still have yet to see since getting really sick) understood.  To give her some accolades she did some research between my two appointments and came with a very different attitude to the second appointment.  But in the first she was disgusted with the course of treatment I was doing and rolled her eyes.  She said they treat Lyme with a short course of doxyclycline in Ontario, to which I explained she was talking about early Lyme, not Chronic Lyme.  She laughed when she read the notes from the American Lyme Specialist who stated that "Lyme sufferers can experience very "weird" symptoms", to which I shortly said "that is a huge understatement.  And thought to myself, lady, if you have even the slightest idea what this is like, you would not have the gall to laugh at that.

I'm not gonna lie...this is a horrible mess this country is leaving Lyme patients in.  Many dish tens, upon tens of thousands for care and what little is covered often ends because they are not back at work and get rejected for LTD.  This part of the story is true for the majority of people I talk to. There is a huge law firm in Toronto specializing in Lyme because the majority of Chronic Lyme patients are rejected from LTD.  So after all those expenses many have to hire a lawyer.  Talk about kicking you while you are down.

I'm not gonna lie...the biggest lie is what Lyme looks like on the outside.  If you see a Lyme sufferer,all I can tell you is it is the farthest thing from what that person looks like to you.  They are masters at muscling through an event or activity and struggling and suffering for it afterwards.  There is so much more physically and mentally going on inside, than what it appears.

I'm not gonna lie...I could never properly describe to you what Lyme is or the symptoms. I get asked that all the time and they sounds like nothing.  But at the time, I can't even say them all.  It also may seem like there is no one major issue, they are all small issues.  But together they ravage every part of your body and mind.  Not one major thing is wrong, just everything is wrong.

I'm not gonna lie...when people ask me how I am doing, I say "okay".  Mostly because that is what they want to hear, but also that is what I want it to be. And some days I really am okay.  But no one wants to hear someone is not okay, even if that's the truth.  I think the majority of the population says "okay" when they dont mean it.  Its just what we do.  I wonder what our world would be like if we could treat one another as if we weren't okay, no matter what we said.

I'm not gonna lie...some moments I just don't feel I have what it takes to do this forever. Then other moments I know I won't have to do this forever.  I just don't know what that place will look like.  Some days I feel the dreams I still have, slipping away.  They are things that have motivated me to push hard through this process.  I don't know what's smarter, letting them go or hanging on for dear life.  Until I'm sure, I guess I will hang on.

I'm not gonna lie anymore...Lyme just really, really sucks!

Tuesday, October 25, 2016

If it Challenges You, it Can Change You

They say "God laughs when we make plans" but they also say "God has better dreams for you than you could ever dream for yourself".  I certainly have accepted the first to be true and am starting to see/hope the second to be true.

The latest protocol of antibiotics has proven to be a bust.  Even with the week break between taking them, I started to get worse each week.  I stopped recovering when I was off them.  Fatigue increased, muscle weakness, further neurological, hormone imbalances, depression, and general fluy like feeling.  It was like facing lyme decline all over again.  I decided to tough it out because it is often hard to tell when it is herx reaction from bacteria kill off or just decline from illness.  My last blood test confirmed it for me and the doctor.  My body was not handling the drug well and my liver was certainly showing signs of challenge.  I had to stop the drug immediately.

I sat with that information for a while.  It was hard to know whether I was happy or sad about it.  There was a sense of relief that I could stop feeling so crappy.  I had wondered how I would last a year at this rate.  But then I wondered if my last chance to deal with the infection in my heart and head was lost.  But I like to think of it as a chance to regroup.  I need to regain the physical progress that I had made a few months ago.  I retained so much hope at that time.  I want to have that back.

I need to wait a month before I can try anything again.  I need to get my levels back to a healthy place with my blood tests and luckily I have seen a couple of new doctors that have more treatment options to try.  One is a Lyme specialist that has agreed to take me on despite the fact that they were not taking on new patients.  Another is working on a slightly different theory to deal with my remaining symptoms.  I am happy to still have options and very grateful to have som time to regain some health.  My slow deterioration and its similarity to the lyme decline was really wreaking havoc on my mental health, my hope and optimism.  I feel that coming back already.

It has been hard to update this blog partially because I was sick and weak, but also my neurological symptoms were a mess.  I am back to writing a little a day and after a few days, I have an update.  But, I really hope to start sharing more.  I have become part of a few groups and with the new doctors have learned so much more about this disease, health in general and many things we can be doing ourselves through this tough life we live.  Its hard on all of us. So hopefully I can share some simple, effective things we can be doing to make it easier...and trust me, I have tried it all and only plan to share what is tried and true.

So many times in this process I have had setbacks, But each time I seem to find something better as a result.  So I am very convinced that is what is happening now.  I am taking this month to find some balance, regain some health and find new focus for further healing.  But what I have decided to start doing more than looking ahead is to start living now.  So many times in this process and I see it all the time with other lyme patients, we look forward to the next solution, the results of what we are doing or for the Country to finally accept us as part of an epidemic, but none of those things are going to happen soon.  So I am starting to live now.  I want to start living life with the symptoms that exist, find happiness in each day regardless of how it could be perceived and know that no matter what kind of day I am having, it is better than before and better than what someone else might be experiencing.  Just writing that feels good.

So here's to more updates and info coming soon, to health and happiness for everyone and finding good in what may look bad...I'm on my way back.


Tuesday, October 4, 2016

The Anti in Antibiotics

After three years of battling this unknown illness, finally being diagnosed with Chronic Lyme, I was so relieved to not only be validated but to have a course of action to eradicate these "things" that had taken over every part of my body.  I didn't care what it took or how hard it was going to be, I would do it. I just wanted to be better and get on with my life.

The plan was to taper on to the five antibiotics for up to 3 years.  Yes, I know that seems like a lot but after 3 years the bacteria has morphed, developed protective biofilms and moved into all the nooks and crannies in ones system.  At this point you need the different types of antibiotics, you need the high potencies and you need to take them for a long period, just to even stand a chance of killing the Lyme.

People would say to me "my friend got Lyme and they took one antibiotic for a few weeks and are fine".  I heard that a lot and there is a lot of misunderstanding about Lyme vs. Chronic Lyme.  Getting diagnosed with Lyme early (typically within 6 months), usually knowing you were bitten (ironically, I did, so its even more sad that I went three years without diagnosis), or visiting a doctor that is inclined to be cautious with tick bites, often means you will get a short dose of antibiotics.  This can bring the infection under control early and avoid all long term effects that come when undiagnosed.  Not the case for me.

A few weeks into to my antibiotic protocol (4-5 antibiotics up to 3 years), I started to have trouble keeping the meds down.  A medical friend was quite worried about the long term effects of the protocol and started to seek out alternatives for me.  This resulted in me suspending my antibiotic treatment for a 4 month alternative treatment plan involving six modalities (three weeks at a clinic and 3 more months at home).  I found great results physically with this and homeopathic supplements, but still continued to suffer from most of the cognitive issues and some cardiac related ones as well.

While discussing my progress with the doctor that originally diagnosed me she was impressed with how my body was recovering physically.  She suggested I may be a good candidate for a strong antibiotic that well, let's say isn't mainstream, nor available in Canada, of course.  But they are finding great results with is cognitively, if your stomach can handle it.  It is really hard on your system, so it requires an even stricter diet than before and will wear down your system quickly.  As a result, they do what is called pulsing.  You take the antibiotic for 5 days then go off it for 4-7 days, depending on how you recover.  You have to be careful to continue detoxing and keep  things moving in your system.  You take a few new supplements to help with the antibiotics and then some different ones to help you recover on the off days.  I think my count is over 20 supplements right now.

When this was first proposed to me we agreed I would wait until my home treatment protocol (the 6 modalities) was over.  I wanted to know what was better with that treatment and have a better idea of what worked and what improved what. Some people are completely against the idea of using antibiotics and of course it would be great to avoid them...but my desperation to fully recover is too strong.   All of these factors seems a little ironic to me these days, because I have since been in contact with so many more Lyme patients and doctors around the world and if there is one thing I have learned it is this:

It is almost impossible to know what solves Lyme, what helps and what doesnt. Every Lyme patient is clawing and grasping as every possible solution to improve their situation even a minuscule amount. Some days you are certain something is working and could be convinced to give it up the next.  You can never be sure what is helping because you get a little bit better then worse, then better again.  You only know that you have come miles when you look back to months before.  And realize you have miles still to go. So you keep clawing and grasping taking on everything someone brings your way.

That I will continue to do, I am striving for full recovery and will stop at nothing less.

So I have been on the new meds for almost a month now.  The first week wore me out but didn't seems so bad.  I didn't realize that even with the pulsing (break in between) each week may increase in intensity.  My second week on, brought symptoms and herxes like I have never experienced before.    Intense hormonal reactions ( I won't go into detail - but wow), my eyesight, brain fog (crazy), loss of coordination, trouble sleeping, extreme fatigue and sick stomach.  I was able to see the naturopathic doctor that helped me balance things out a bit and decrease the reactions.  But at the same time she reminded me what a great sign this was.  It meant the drugs were working.  They were attaching the bacteria in places I was having trouble seeing any improvements.  And that is so motivating to me.  We have found a way to get at it where we haven't been able to before.  The hidden bastards have been found and they are not winning hide and seek anymore.

It strikes me that the next year is going to be quite a roller coaster ride but for the first time since being infected I have some semblance of when I might be sick and when I might have a few good days.  That feels like living again!

I was also told about a cream that contains a protein that Lyme patients lose in the process that iscrucial to good immune system health.  I am trying that one too.  I have spoken with two doctors in Toronto that were able to share some good further treatment options, and have become part of a nationwide group that has a doctor providing tips and direction to patients.  It is also a group that other doctors are encouraged to join to hear stories (good and bad).  They have created a massive drop box library of Lyme information.  I was originally encouraged to avoid Lyme groups because of the lack of credibility of information and instability of the people posting - but one doctor (who has also published a book after helping her some through Lyme) told me this one was different.  What an incredible resource.  I can't wait to share with you the one graphic I found that would have changed this whole thing for me...another blog.

I also have three pending doctors appointments, with doctors I have not seen yet.  One deals with cell  health, another is a Lyme specialist that was not taking on more patients for over a year due to Lyme challenges and the last is a new doctor covering for my family doctor (not the one that dismissed me).  So I will let you know what I find out.

I find it interesting to think back to the four months I was on the Utah protocol.  I was so eager to get to the end. Yet, when the end was near, I started to panic what would happen when I got there and not all was better.  I felt like all would be lost.  But I have since realized we can keep working on this, many little options are out there.  There is no one big solution.  It is slowly, over time building up your system to fight, while killing off the bacteria a little at a time.  I am so grateful for the Utah protocol because I feel it helped me recover physically with some of the best results I have seen in Lyme patients.  My physical mobility is so important to me for my mental health. I love to move and love to get outside, I can't imagine being able to recover without being able to do those two things.  So even when I am really sick, I still have a smile on my face.

Side note: Sorry for the lack of updates recently.  The antibiotics just don't allow me to think and write clearly.  I know you may find some of the details above a little confusing.  But thanks for understanding, it just feels really good to share with all of you again. 

Friday, September 2, 2016

Lesson in Lyme #1 - Stress

Shortly after I arrived at the clinic in Utah, to begin my treatments fighting Lyme disease, I was asked a question that took me a little by surprise.  It was this:

"What was the stressful event that preceded or accompanied the onset of your major symptoms?"

My first reaction was, "I didn't have a stressful event".  Then I thought about it some more and realized there were a couple of things actually.  Not a big, one-time event but more like stressful situations that lasted months.  You know those situations that you think you will just manage for the time being because a solution is more complicated to implement than just dealing with it.  Man, do I ever have a different perspective on that now.

The fact of the matter is that the one consistency the clinic was finding with Lyme patients was the gradual decline was instigated or intensified with stress.

I suppose it makes sense that our immune systems are compromised with stress.  We all know that and have heard that, but it's really hard to associate when you are stressed and you cannot feel your immune system wearing down.  So I think we often forget or find it hard to believe at times.

Many researchers and some doctors feel we should have the ability to fight Lyme disease with our own body.  But the truth is, we are not healthy enough.  Our diets are not rich enough in vitamins and minerals, our lifestyles wear our system down.  Our activities don't make us strong enough and our habits wear out every system we have. We dont support our immune system in such a way that it can help us fight the big fight when it comes around.  So we can't fight things like Lyme and eventually, it gets the best of us. Stress is one of the biggest factors.

In my quest for health and fitness and while training others I started to realize that stressful periods actually set progress backwards not forward.  As a younger person I used to feel fueled by stress, I thought that gave me motivation and drive.  And it does for a while until you survive on that motivation too long and deplete your lymphatic system.  You see when we thrive on stress, we do so because adrenaline is released into our body. It's a jump, a fuel and it gives us that extra push.  But when we continue to depend on that, even subconsciously, we utilize a system that was only meant to support us in emergencies.  We wear it down, we drain it and when we really need it nothing is there to help.  That's was working with stress will do to you.  So if you are one of those people that feels they do better under stressful situations, use caution, you may be falling into the same trap I did.

Now in recovery, I am in what I consider a very vulnerable state.  Just simply existing wears down my body. I am trying to rejuvenate an immune system that was basically shut down with such a fine amount of energy that I can see the effects of everything I do or dont do, everything I experience and every choice I make.  I feel like a true test case for everything good and bad for our health.  And this is what I know for sure.

Every thought adds or takes away energy from your body.  So a negative thought tells your body you are in a stressful period and to prepare to protect itself.  Its like telling it to put all of its energy in preparing for war.  And what a waste of energy that thought is if there is truly nothing to protect yourself from.  If it is only your perception of something and not the truth, what a waste of resources for a nonexistent situation.  You just put your body into a false stress.  And how many times do we really need to prepare for war?!

Every feeling we have takes away or adds energy.  And feelings are much harder to manage than thoughts. They are reactions to many years of experience, to traumas and memories too deep to erase.  But they can be changed over time.  You can't ignore feelings, they won't go away.  You can't work past them, they will keep rising to the top.  So because I have had to work very hard to retain every ounce of energy I have, I have found only one solution to overcoming emotions and feelings that deplete and that is to replace them with ones that fuel us, with these few steps:

a) You have to feel the feeling - notice everything it does to you, what hurts, what feels awful and all that it does.
b) You have to be truthful about what it is - negative feelings are often ugly and it is embarrassing to admit to yourself what it really is, but you must in order to move on.  So if it's jealousy, hate, embarrassment, judgment, call it what it is.  Try to sort out where it came from.
c) Replace your feeling with the thought and feeling you would prefer to have.  This one takes practice and reprogramming.  It doesn't happen overnight.  It's kind of a "fake it till you make it" kind of practice...but with time will be a more conscious reaction. It's worth the effort.

Often times people try to do "c" without doing "a" and "b".  Save yourself the frustration.  do "a" and "b" because that is your only chance to really move on.

Often times we actually put ourselves in stressful situations, even when we are not intending too.  We get caught up in the drama, we put too much on ourselves, or we simply don't take good enough care of ourselves to deal with stress.   And when the big stresses of life hit, we don't expect ourselves to handle it, but what if we took better care of ourselves so that when the big stresses hit (the real dramas of life) that we were able to handle them much better because we weren't so depleted?  Now, that is a concept, I have had to learn the hard way.

As I was getting sicker with Lyme (and didn't know it was Lyme) I knew I was not handling stress well.  I tried to avoid stressful situations but found that very hard.  Old habits die hard too.  So, I kept feeling more depleted and finding that I handled less and less situations with calm and confidence, like I once felt I could.  Now I realize my efforts to avoid stress were feeble at best.  Falling into the stress trap is often the easy way because it is how we live these days.  It is what we know best.

In recovery, I am able to really feel what each little thing does to me.  An unpleasant email,  discontented phone messages, lack of assistance, life challenges, they all play a small but significant role in increasing your stress level and depleting your resources.  I can see how ready one small negative message can set back my recovery days.  I see how it instantly depletes energy, how it affects my heart rate, my oxygen intake and how long it takes to return.  It's not worth it.  Stress does far more damage than we realize.  It's always working away at depleting and tearing down our system.  You can't see it, you may not feel it, but it's doing much more damage than we realize.  You can't let it.

Here are some things that are impossible if you deal with significant or chronic stress:
- long lasting weight loss
- good vitamin and mineral absorption
- healing of any kind
- maintain an immune system to support you
- maintain or build energy
- maintain or build mental health
- slow down the aging process
- ability to manage real stress well

What if we managed the little stresses so that our body could thrive?  What if we constantly worked on habits that kept stress under control so that when we really had stress we could cope?  What if we learned to do daily practices that boosted our system, not depleted.

Think about all the time in your day you deal with stress, even the smallest stresses.  Do you do the same amount of work to decrease your stress?  Yes, it does take that to much effort to counteract our stress.  So you certainly don't want to create it where it isn't.  You certainly don't want to make your body think it needs to deal with stress when it doesn't.  But even better than that you want to treat yourself with genuine empathy, be kind, supportive and help it rebuild, so that you can always deal.  Living with even a mild undertone of constant stress is no way to live.  Its worth your efforts to turn that around.  You deserve that.

Monday, August 29, 2016

Lessons in Lyme

I have learned it is clearly nieve to think that healing from Lyme is just about restoring your health.  This disease poses so many hurdles that unfortunately it is much more than just getting your body better.   I think it is the same for most challenges in life.  It is never as simple as it appears on the outside, it is harder that it looks to others and no one knows what each if us is really experiencing.  It has been good to acknowledge that for myself and for others as well.  But the real trick is to acknowledge that and move on, not to use it as an excuse.  So that I will do.

When I was really sick I remember thinking whatever this is it has literally impacted every part of my body and every system it operates.  After being diagnosed I started to realize that it not only impacts every part of you, it impacts every part of your life.  And in healing I have come to realize it impacts even much more.  It is impacts you physically, mentally, emotionally, socially, financially, politically, career, family, simply impacts who you are and the legacy you want to leave.

Recent challenges that go much beyond on my health have demonstrated that I have a long way to go to full healing and that the ramifications will be lasting. I can allow these challenges to jade me, wear me down or scar me.  Or I can take  each one, deal with it and learn so that I may help myself and others.  To do that I must take the lesson for each battle and find what is good in.  So that is what I plan to do because here is what I have learned:

1) Everyone is battling something and if we can do anything to help one another it is to share in the pain, share in the healing and simply support one another regardless of what the struggle might be.

2) Because Lyme eluded myself and doctors for so long, I have potentially been sick with many illnesses and tried every trick in the book.  If anything, I have a sense of what we can do as individuals to heal and more importantly, what works and what doesn't.

3) When you body is as weak as mine was, it is very sensitive or receptive to everything you do, good and bad.  It gives a very true sense fo what impacts our body and how some things, like stress (that are often hard to realize) are doing much more damage than we can imagine.

4) That if I can take all that this disease is teaching me and share it, I may not only help someone else, I can remind myself that there is purpose in all bad that happens and keep moving closer to full recovery.

So although, I have come a long way, I still have a long way to go.  Progress is so slow and minuscule that I cannot reflect by days or weeks, I need to reflect in months, to see how far I have come. And I have come a long way.  Full recovery is my goal so I have no plans to stop here.

So instead of providing updates on my recovery, my status and what symptoms persist,  I have decided to turn this whole thing around.  I am going to share what I have learned, especially all the things I plan to forever implement in my life as a result.  If people can take something from it then great, but for me it will help me focus on the end goal of health, not where things stand right now.  It will also hopefully distract me from al the small hurdles that seem to accompany this process.

So my next updates will be what I will refer to as Lessons in Lyme.  I hope people will find value in them. Some of them have changed my life forever.  Lyme has changed my life forever, but I am determined to prove that it was for the better.  I have to believe the purpose in all of this is much more profound than the challenges, or I would give up.  I am choosing the road that is longer, slower, rougher and harder, but I believe that at the end is health and no one is going to cut that journey short.  No one is going to convince me to take what appears to be the easier route.  No one is going to convince me that I am not going to get there.  I have a way to go before I can get there.  But I will not stop my conversation here until I get there.    I will not stop until I get there.

Friday, August 12, 2016

Lyme Action - What's the Province up to?

Thanks to the help of a special friend, I received a call today from a Policy Advisor at the Ministry of Health and Long-Term Care, The Honourable Doctor Eric Hoskins' office.

I suppose if there was anyone I wanted to hear the story of many Lyme patients - those I have talked to, read about, and heard of, including myself, then it was likely her.  She was kind and considerate and was wanting very hard to understand all of the things I had to tell her.

She shared with me a report that was released at the end of July:
Combatting Lyme Disease Through Collaborative Action - Ontario's 10-Step Education and Awareness Plan

FEEDBACK from Ministers Staff: 
She explained that this was the result of a collaborative of many stakeholders giving direction to the Province.  These included many patients and medical professionals.  She explained that these are the first steps the Province is being directed to take.  

You can read it at this link:

I read through it prior to our call and here are some of the items I shared with her regarding it and my experience:

It focusses heavily on education and awareness - hence the report's subtitle.  I think that is very important and with that, prevention should always be the goal.  So it is good that this is not being overlooked.  But none of the awareness would have changed this situation for me.  Admittedly, I needed to find a better way to remove it when I was alone and it was between my shoulder blades, a tough spot to reach.  But, the fact that it was being removed within 24 hours negated that for me.  That message should be revised.  Generally, I think the basic information is getting out there.

It may be too late to rely so heavily on prevention.  That may have been more important a decade ago when so many people were not already infected.

NOTE: I was wearing socks and shoes.  I was wearing running tights that were secure around my ankle.  It was a cold day, so I have a tshirt, long sleeve shirt and heavy rain jacket on, along with a 40 lbs backpack, heavy on my back, with a thick waist belt and shoulder straps.  I used a spray with DEET and even added Tea tree oil to my lower extremities (I read that somewhere).    I think that sums up most of the prevention recommendations I have read.  And yet at the end of the day, I have 7 ticks on me, 5 of which had made their way to my back. We can't rely so heavily on prevention.

I keep reading the statistics of Lyme reports and I hate to be so blunt, but the numbers are wrong.  I know of 4x the numbers present that go to one doctor in the states, that are from Ontario.  You have to remember, I am still not an Ontario statistic, because my only assistance has been from the US.  I do not have one medical doctor that is assisting me right now or aware of my situation, in Ontario.  I believe if this province knew the real numbers of: patients treated elsewhere, patients still not diagnosed, patients suffering in silence, you would be looking at this disease as a medical crisis.

This is mentioned in a very vague way.  If this is the medical crisis that we feel it is, we need to know very directed studies are happening right now.

FEEDBACK: there is public health research money that is being redirected at Lyme research since Lyme has been established by the Minister as a priority.  

This is good to understand because I didn't understand how we just pay for more research.  But I do know that some research is based on figuring out the high risk areas (geographically).  I am not sure that is important, we need to treat all areas as potential risk.  (I did not have a chance to state this sentiment - recording it here).  I also feel the research should be diagnosis or treatment focussed.  That is where the real challenges lie.

The challenges with the blood test are mentioned here and thats good.  For a few years, I ruled out Lyme simply because my blood test was negative.  But here are a few considerations concerning the blood test:
- there is a better test in the states that you do not refer to.  All medical doctors in the US and naturopaths that I have been to in Canada use this test. Although it is not great, it is better than the one we use here.
- I have been told by a medical professional in the US that the longer you have Lyme the less likely the blood test with show positive, because of the way the proteins bind together and therefore don't reveal themselves.  I hope I am relaying that information right, but I am not a medical professional.  I just know the longer you have it, you reduce your chances of a test picking it up.

FEEDBACK: She did agree that doctors may not have been aware a few years ago about the high incidence of false negatives.  Hence the direction to move to clinical diagnosis now. 

It is nice to see that Ontario is encouraging clinical diagnosis since the testing is so weak. But there are a few concerns that are not being addressed when this recommendation is being mad.
- Clinic diagnosis is being made by eliminating all other possible causes.  Well this took me over 2 years to complete all the test and find nothing wrong.  I was very sick by then and full recovery is not likely possible.
- Lets remember: I had seven ticks on me, one was attached, I got very sick shortly after and was plagued by mounting illnesses for the next three years.  Yet, no one felt it was Lyme.
- The question is - how do you see clinical diagnosis happening?  How are you helping Doctors Diagnose?  If it is by process of elimination, it is too late and too long of a process.  Doctors in Ontario need way more tools than they have to diagnose clinically.

FEEDBACK: this proved to be a fruitful conversation since she felt the topic of "process of elimination" had not been brought up as a concern.  I also mentioned a workshop that was being held in the US that brought together Lyme proficient doctors to aid others with clinical diagnosis.  She was going to take both issues back to the Stakeholders group.  We both agreed that clinical diagnosis will be a challenging task for doctors, the more assistance the better. 

Assuming Doctors are able to make a clinic diagnosis more rapidly, Ontario regulations are preventing doctors from treating with the course of antibiotics that is required to actually combat the bacteria.  a few things are happening here:
- doctors are being investigated when treating with high antibiotics over a longer course. They are becoming apprehensive to do so as a result.  Some Doctors who have done this in the past are refusing to take Lyme patients because it puts them in a vulnerable spot.  I am aware of this first hand.
- some patients are being treated with a normal course of antibiotics, but if the disease has progressed this will only knock down the bacteria temporarily.  Symptoms are gone for a while and then when illness returns they are not associated with Lyme or previous illness.
- Some fairly successful antibiotic regimes used in the US have included 5 antibiotics for up to 3 years.  That would never even be possible in Ontario.  And even at that, some patients have some symptoms return.  So it doesnt necessarily kill all the bacteria because some Lyme celled become so thick celled antibiotics cannot penetrate.  Regardless, that course of antibiotics is unheard of here.
-you have no idea the stories I have heard of what some Ontario patients have to go through to get this treatment when they have decided it is their only way.  It makes the average person feel ike fihting for their health is wrong.

FEEDBACK: Protocol for medications was not something she could speak to.  I agree this is a very touchy subject and probably the biggest hurdle to helping patients recover.  My understanding is that presently antibiotic protocol in Ontario will only allow for quantities and longevity that will resolve early Lyme, not chronic Lyme.  

There is a call for a Nationwide framework for Lyme.  The idea is that this will pull together experts from all over the continent and hopefully gather valuable information from the US treatments.  However, (in my lamens terms), there is a protocol you have to follow which goes something like this: The Province working through the College of Physicians and Surgeons, working through the Canadian organization working with the American affiliate, to the form a national approach.  Not an easy process.  

I wonder if the idea of Doctor workshops is a way to share valuable information while the formal approach is happening...?

I will say no one is treating Lyme perfectly yet.  But I am adamant when I tell you, the US is atleast doing a much better job.  Ontario has no idea how many people are travelling there and paying more than $30,000, $40,000, $50,000 for help, knowing it is not foolproof.  That point itself should be proof enough to show how inadequate it is here.  But this has been happening for decades.

With some work, I was able to get short term coverage through the Federal Government , by proving that I had to go to the US for treatment because nothing was available to me here.  Thank goodness for my blog, because it played a huge role in demonstrating that.  But, my point here is if in a round about way, the Federal Government has acknowledged that I could not get treatment here, I would hope that the Province can recognize that.

Yet, I am not able to get medical benefits for any of my treatments through my provincial health care system or private medical benefits that I have at my work because they only cover medical emergencies in the US.  The fact that sufficient treatment (or no treatment at all in my case) was not available here.  A diagnosis was not even possible for me, here.

FEEDBACK: Was an issue that was consistently raised by patient stakeholders.  I was assured they are looking at this issue in more detail.  I have to admit, it is just nice to hear this issue recognized, but I have to be realistic in knowing that for them to acknowledge this should not have happened and is not just, puts the Province in a very vulnerable position.  I will be very impressed if this is ever rectified for past patients.  For now, need to focus on ensuring that fewer people have to resort to this.  And that means resolving the above issues first. 

So when we look at the Provincial Report and apply it to my situation alone, awareness failed me, prevention failed me, diagnosis failed me,  treatment failed me and all possible coverage failed me.  I do feel the report has some good general content to it, it really just needed to be published a decade or two ago.

I can tell you what impressed me the most is the effort that was put into hearing my and many other individual stories.  I will also say the information gathering feels very genuine to me, especially when she was able to reiterate what info was new and would be valuable to the group.  What a great way to make someone feel heard and valued.  I know for many Lyme patients, that is something they are striving for.

I also know these efforts take time.  It is unfortunate that we are so behind  because time is not something we have.  For many, it's way too late.  Regardless of timing, the Province has decided to make this a priority.  As a Lyme patient, I can get stuck at being bitter or I can continue to seek solutions and offer suggestions and maybe we will get somewhere faster than hoped.

Thursday, August 4, 2016

Lyme Resources - Help is out there, don't give up

I was reminded today of a conversation I had with a recovering Lyme patient right after my diagnosis. I admired her for her tenacity and willingness to share her info. She was also spending her time being an activist for Lyme and advocate for patients. I was so low on energy at the time, I couldn't imagine myself doing that. I told a friend at the time that I just wanted to heal and move on.

What I have come to realize is that as you work through this disease you start to meet people who have traveled a rough road, like yours but different as well. Some are finding success, others not so much. As you heal, you don't want to leave them behind, nor do you want others to suffer. It is very difficult to just heal and move on. Someone saved me because they didn't just heal and move on.

Then comes a helpless feeling. The whole world is starting to talk about Lyme and nothing is changing. Or is it? It is impossible to know what could be or is happening behind the scenes. So, the only option is to keep trying.

I started this blog originally to share my treatment updates with family and friends, while I was away. I knew it would be a personal one and wanted to keep it so. I seem to be opening that circle wider and wider, with the chance that it may help others. The least I can do is share my vulnerable, personal experience if it helps to bring awareness to the disease, the severity, and the challenges. So I will.

Today I was given the opportunity to speak with Kristy and Leanne on CFRA 580, the Morning Rush. The media has been helpful to the Lyme crisis and it seems to be the best tool we have right now. I thank them for all they are doing to bring awareness to the disease.

You should be able to listen online at:

2016-08-04 Hour 3 of the Morning Rush from August 4, 2016.
31:00 mins

2016-08-04 Hour 4 of the Morning Rush from August 4, 2016.
11:50 mins

I realized I shared in the interview the best piece of medical advice I received. I was told to keep a diary of my symptoms when we had run out of options. I didnt like the idea at the time because I felt it made me focus on what was wrong and would fill me with reminders of bad things that were happening. I thought the worry that I was becoming a hypochondriac would be fed with such a list.

What the diary did for me at the end was gave me a snapshot of how bad things really were. There were so many more things happening that I ignored or forgot. But I was also told it helps give the doctors a much better picture of the situation. You are more certain of timelines, severity and frequency, all of which help a doctor diagnose. I realized that I was not focussing on the bad, I was developing the tools I needed to move on. I was helping myself the only way I could, hence helping the medical system help me...regardless of whether it was in the US or Canada.

And with that, I also share this advice:  Make sure you are doing all you can to help yourself if you are feeling unwell. They key things: healthy, healthy, healthy eating, daily movement, tons of rest, stress reduction and seeking help everywhere you can. If you can't depend on yourself to help, how can you expect it of others?   Easier said than done I know, especially when you are already feeling so lousy. But it is the most important piece of the puzzle. It determines how badly you want to heal. 

Some key contacts and resources, many of these were shared with me just before I was diagnosed and helped me get there.  So far through my journey, they still prove to be the most reliable. - Canadian online resource - US online resource

IGeneX inc. - US Lyme testing laboratory - Can be ordered by Canadian doctors and Naturopaths.

Dr. Maureen McShane - highly informed medical professional in Plattsburgh, NY and Lyme patient.  You can just google her and find out a lot

Hampton Wellness Centre - Dr. Marie Matheson - Naturopathic Doctor in Ottawa specializing In Lyme Disease

The FAR Clinic, Bountiful Utah - Research based alternative treatment, led by Dr. Brett Earl.  Their Facebook page has a wealth of info too.

Friday, July 29, 2016

Confession #3 of a Lyme Patient - Sadness...Gratitude

It is hard to know if and when I was sad over the three years I was unknowingly battling Lyme.  I believe there were many days of frustration but the fact that I thought it was something that would pass, generally kept me distracted from the mounting problems.

What has surprised me in reflection is the lack of sadness in the last months that my condition rapidly deteriorated.  I became so accepting of my situation, which seems quite unlike myself.  I did stay very focussed on what I could do instead.  As fitness became impossible, I started walking.  As walking became impossible, I started painting.  As painting became a disaster (funny story for another day), I started putting away at all the little things I could do to keep myself busy.  I stayed focussed on what I could do...until my mind started to fail me.  That became insurmountable because not only could I not think of what to do, I was having trouble just thinking.

Here is the shocking thing that started to happen in this process.  As I fought to find things I could still do, things I still had in my life, things that gave me purpose, I realized I had more than I ever knew before.  As pieces of me were slowly stripped away it unveiled all the things I took for granted. And maybe I didn't take them for granted, but I didn't take the time to consciously consider them and be grateful.  Which in truth is taking them for granted.

As I sat outside wondering where this unknown illness was going to take me, whether I would be walking on my own much longer, I noticed the incredible 100 acres of natural view I had, the mock orange tree my mother in law gave me that had grown into a huge beautiful tree, the willow that reminded me so much of my friends father, the amazing rock terrace my brother in law built, that replaced the pool that my daughter spent countless hours in, the rock sandbox that my son spent countless hours in, the shed, porch, deck that friends and family not only helped us build but spent many days and evenings, sitting in, on or around.  The list went on and on, so many things, the spruce trees we transplanted that acted as goal posts for my daughter billion soccer shots, the open lawn that made way for my son's billion football plays.  Meanwhile, my daughter is out for a jog on the country road and my son is on the tractor helping his grandfather in the backfield, my husband is cleaning his ATV (again lol)...if all I ever do is sit here, I am so blessed.  What I am so sad about, is why did so much have to be taken away for me to clearly see all of this.

I am glad that I had those moments and days of clarity because I was also lucky to have found a diagnosis, support, and treatment shortly after this. I think the saying must be true "to get what you want in life, you must first appreciate what you have."   Although I still have a way to go in my recovery which is filled with highs and lows, I know that I have so much to be thankful for.  I know that if this is as good as I get, I am blessed.  I know I have friends, family and a community that supports me and that in itself, is all I need to have a purpose.  I don't know where this Lyme road will take me, but if all it does is take me to where I am today, I will be just fine.

The really interesting thing about Lyme, especially for women, that I have learned, is how badly it affects their hormones.  My husband will likely say he didn't need to be a scientifist to prove that one.  I understand the bacteria feeds on the hormones and creates incredible imbalances.  For years when I was "googling" all the possibilities of what could be wrong with me, hormone imbalances certainly frequented the list.  So, if this blog sounds like my journey has been all rainbows and lollipops, I am sorry to mislead you.  That is certainly not the case. Funny enough the hormone imbalance became most obvious in recovery.

My first effort at recovery was with antibiotics.  It was clear right from the start that they were working because symptoms started to disappear.  Although the antibiotics would not work for me in the long run because of many adverse reactions to them, they sure made a dent in the bacteria and started my recovery.  Yet, it took me a few days to realize what was happening.  Sometime between 8:30-10:30 every morning, I would cry.  I don't mean for this to be upsetting to anyone, it became a bit of a game with me.  It took a few days for me to realize what was happening. I might be writing this blog, cleaning up something that spurred a memory, something someone said wrote, sent me, did and I would start to cry.  It wasn't the kind of sadness you couldn't hold in, so I just let it out.  I started to accept it was going to happen each day and gathered curiosity in what it would be that would set it off.  It kind of became part of my schedule as silly as that sounds.

What I did learn in all of this is that as the Lyme was being attacked by the antibiotics, the hormones were not being attacked and were gaining a running start at rebuilding, balancing and restoring their normal status (as normal as possible with me lol).  Like clockwork, I assume somehow correlated to when I took my antibiotics, I would have something hit me deep inside and make me cry.  It felt good, was healing and then started to transform into the most profound gratitude I have ever felt in my life.  It started with sadness and then would feel more like gratitude and then it became the gratitude that made me cry... "a good cry" as they call it.  It is a lot for me to admit this. I am usually one to hold it in, hide the sadness, or at least deny the cry. But I somehow believe it to be a monumental step in my recovery.  It didn't allowed me to deny any worries, fears or sadness, it had to come out.

So as I approach three and a half months into recovery, I have to admit it doesn't happen very much anymore.  I guess this is as balanced as my hormones will ever get (oh my poor family hahaha).  But it has made me realize that on the other side of sadness is something we work very hard to achieve in life and that is gratitude despite the situation.  I have seen how the most giving, grateful and generous people are often the ones that have lost so much or had to fight for what they have.  I now realize why, when so much is taken away, you are able to see how much you have.

I have decided to find the gifts in this process and this is certainly one of them.  Sadness, fear and vulnerability don't scare me anymore.  I have gotten better at accepting help and support because I know when I am better, I will give it back.  Somehow deep inside, I feel this disease is going to give me more than it ever took away.

I have also decided to quit waiting until I am better to do things.  I was waiting until my anxiety got better to head out in crowds, for my energy to come back before I went out for any length of time, for my brain fog to dissipate before I just went out.  But I have since decided to live with the Lyme as it presents itself each day.  I have gained many coping mechanisms to deal with the remaining symptoms, so in case this is as good as it gets, I may as well put them into practice.  I can't keep hiding at home waiting for this all to be over.  It just doesn't work that way.  I believe if I can accept where I am today, it will only get better from here.  If I am grateful for where I am will only get better.

Friday, July 22, 2016

Confession #2 of a Lyme Patient - Craziness

I wrote this blog a while ago and never posted it.  I don't want to sound like I am making light of this aspect of Lyme.  I also don't want it to seem that I am trying to qualify "crazy'.  I have been comfortable being described as crazy in my past.  I am different, I do things my way, I do many things others don't want to and I think in a way very unique to me.  I consider that crazy at times and I like that part of me.  But I have been speaking recently to others about what it feels like to mentally be fighting Lyme and I realized there are so many levels to that answer.  Like many battles in life, there is a huge component that is mental.  And not only does this physical disease affect your body, it invades your brain.  On top of all of that, 3 years of misdiagnosis wipes away most of what you know, believe and trust about yourself.  So you begin a lifelong battle to fight for someone you don't trust, in a body you don't know and with a mind that is not in the game.  That feels "crazy".

I recently watched the Avril Lavigne interview where she talks about how people made her feel like she was "crazy" when she was unknowingly battling Lyme for several months.  I can't say anyone said "you are crazy to me" but with the symptoms, side effects of the disease, lack of awareness and misdiagnosis, "feeling crazy" is an understatement.  Now, don't get me wrong.  I have been a little proud over the years to call myself crazy.  But Lyme over a period of time takes crazy to a whole new level, one I was not comfortable with.

Early Crazy - you swear something is wrong with you.  The symptoms are well beyond anything you have experienced before and yet, everyone tells you, you are healthy. This doesn't feel healthy, but they say it is healthy.  I would have sworn there is something more serious going on.  How could I be so wrong?

Continued Crazy - now the symptoms are mounting.  You have decided to accept some as just part of life, but new ones are emerging.  Are you looking for them? Are you somehow doing something horribly wrong to create them?  Have you become a hypochondriac?  Why does it feel like your body is literally falling apart?

Remorseful Crazy - you finally admit that being crazy earlier in life is coming back to haunt you.  People told you shouldn't do those adventurous things.  They said you were too hard on your body.  They swore you would break down before you were very old.  Guess they were right.  Of course, you could go from endurance racing to every limb, system and basic function being affected, because you caused it.

Pessimistic Crazy - you used to be so positive and now your negative views are physically affecting you.  If you could just ignore the symptoms and get on with life, they wouldn't seem so bad.  You used to motivate people to be active and adventurous, now you are the exact opposite of what you strive to be.  Quit thinking about what you can't do and move on.

Forgetfull Crazy - Why can't I remember that?  Strange.  Must have too much on my mind.  Got to get myself organized.  Forgetting too many things lately. I hope no one notices.  I will gently ask a few questions and get things sorted out and get my act together so it doesn't happen again. At least I can admit when I make a mistake.  Shit, I did it again.  This is getting embarrassing.  How does that keep happening?

Brain Freeze Crazy - I can't sort out my thoughts to write this email.  Why is something so easy, so hard for me to put together?  I must have too many interruptions.  I need to work at home for a day.  Maybe I need a vacation.  Wow, if anyone knew how long it is taking me to write this email, they would be horrified.   I wonder if it is not making sense to just me or if it will not make sense to the reader?  Why can't my head figure this out?  Maybe I will leave it until the morning when my brain is clear.

Brain Cramp Crazy - oh my, what was the word I going to say?  It was right on the tip of my tongue.  It's gone, wait a second, pause, it may come back.  Now I don't even know what I was saying.  Everyone in the room is looking at me like they are totally confused about what I was talking about.  I can't remember what I was talking about.  This is embarrassing.  Why do you always have to share your thoughts?  Next time, just wait and maybe you will say it more concisely...or not at all.  That would be safer.

Walking Crazy - I couldn't walk this morning.  How odd does that sound to say? You can't tell anyone that  - how dramatic would you sound.  They will think for sure you are exaggerating.  As if you couldn't walk.  Just sit on the bed and move your limbs until they can support you.  See, you can walk.  You were just asking it more than it was.  Good thing you didn't say anything.  That would have been embarrassing.  Except, I don't know if leaning on the wall down the hallway, is considered normal.

Drunk Crazy - OMG I just fell into my desk again.  Is it sticking out too far?  I have to quit rushing.  Maybe I am lightheaded.  Am I drunk?  I feel drunk.  I walk wobbly at times.  It's like I get thrown off balance for no reason.  I have been knocking things over lately.  I have never been very coordinated. I was always called a bull in a china shop.

Dream Crazy - you don't have dreams anymore. I wonder why that is?  I literally don't wake up and remember a dream.  It's been months, maybe years since I have dreamed.  Hmmm I never realized that until now.  But you know, I can't picture my life lasting much longer like this.  If all of this is getting so bad over the last few months, I can't even picture myself a few years down the road.  Not much to look forward to.

Lyme Crazy - why would you argue with a doctor that you want to go the US to be diagnosed by a Lyme Specialist.  Why would you insist you have any idea what's wrong with you.  You can't doubt the blood tests, they were all negative.  Quit trying to make something of nothing.  Who diagnoses themselves and why would you want Lyme?  Oh wait, maybe because that is the answer to ALL of this craziness.

Overthinking Crazy - I would just like to stop thinking about this for a day.  I don't want to wonder about my symptoms.  I don't want to talk myself into something really being wrong, then telling myself nothing is wrong. I don't want to worry about what I say, what people are understanding, why I can't do something, what thing I am going to do next, what new thing will pop up and surprise me, how I am going to cope, how I am going to hide, how I can get it all done, how I can get by just another day without looking crazy.  I just don't know how.

The thoughts go much deeper than these examples.  I think the major point is the thoughts, analysis and self-assessment never stop.  From the outside all looks perfectly fine, everyone tells you it is perfectly fine and it's just a crazy mess inside.  So when you see Avril Lavigne quite emotional about her story, I believe it's partly sadness from a time where she was so helpless, she didn't even have herself to depend on.  But, it is also a release of relief that she can find herself again, she was right that something was wrong and she wasn't crazy.