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.  ...

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!