Wednesday, November 16, 2016

Today is TWO YEARS of Treatment for Late Stage Neurological Lyme Disease.

I used to imagine myself throwing a big I'm done with Lyme disease treatment party at my 2 year mark. That's how long I was told it would most likely take for me to get into remission. Throughout my treatment it seemed like the time would never come, but it's here and 
I'm not done with treatment.  

This ice pack on my boob and heating pad on my back is not making me feel any better about it today.

Ok Ok.  It's hard to explain to people what is going on with my body so I'll let Lyme specialist Dr Richard Horowitz do the explaining:    
"MSIDS stands for Multiple Systemic Infectious Diseases Syndrome.  Chronically ill, complex patients, no matter which diagnosis they have, often have simultaneous multiple bacterial, parasitic, viral, and fungal causes of their illnesses.  These people also have associated immune dysfunction, large environmental toxin loads, and hormonal disorders, mitochondrial dysfunction, allergies, functional metabolic abnormalities, sleep problems, and underlying psychological disorders." 
Some or all of these health issues prevent Lymies from getting better, not to mention co-infections.  So yeah, the realm of this disease is bigger than I would have liked to imagine or admit to myself in the beginning of treatment. It's not just Lyme, it never is for those of us who were diagnosed in the late stages. This isn't any new discovery to the Lyme community and it's not the end of the world for me to still be in treatment.  Now I can focus on getting the bad shit out of body and getting to 100%

Throughout my two years of Lyme treatment I have seen a lot of improvement.  My overall quality of life has improved and I do not fear waking up to new and crazy symptoms on a daily basis. I find joy in riding with the car windows down and being able to take a walk outside (because I couldn't do those things).  My stomach doesn't bloat in pain after eating food and my body doesn't hurt so bad I lie awake crying at night.  Most importantly I can think clear and speak freely.  I acknowledge and smile after each story I tell where I don't lose my words and slur my speech.  Overall I feel way less crazy in every way possible and have way less anxiety about everything in my life.  There may not be a cure for this disease but I find one of the greatest things is to not be swimming in the fear of the complete unknown.  I say complete because it is quite fearful to feel as though you are dying without knowing the cause.  Although, the future of my health may remain unknown I can and will continue to fight for the health of my body.

Something is still off with me though!  I've been getting raging headaches periodically in the evenings and ill feeling in certain environments. Symptoms are lingering, symptoms that should not remain.  For instance, muscle pain and knots, swollen eyes, joint pain and aching. There is an overall feeling of not being well that started to happen once the weather changed.  Rainy day allergies triggered an aha moment and a major concern that I am missing a very important part to my remission...
The load of environmental toxins within my body from mold exposure.  All the Lymies are like...Duh should have treated that first but I trusted my doctor would have done that had she suspected it.  Instead we misdiagnosed my symptoms and treated me for Bartonella, which I'm now learning is a common error.  Moving right along...

Even before I moved into my ex's house I told him I smelled mold.  It was always disregarded.  The water would pour out of the gutter on rainy Washington days with nowhere to go but under the ground where I laid my head day in and day out for 5 years. When I went to visit Dizzy I noticed black mold seeping up from under the back bathroom tiles. Allergic to my house was an understatement.  My house was killing me.
I began researching living in moldy homes and mycotoxicosis and came across Dr. Lisa Nagy, a native Clevelander who nearly lost her life and career from built up mycotoxins in her body.  While watching her presentation it became CRYSTAL CLEAR as to why I'm not better yet.  I was exposed to toxic mold at the same time I was exposed to Lyme disease, throw in a few genetic mutations and you have the perfect storm within my body to get real sick. Learn about mold guys, it hurts people and animals, even kills them.

Info on mold:

This movie starts off slow but gets more informative as it goes.

My plan for year 3 of treatment:

And Yes I am very hopeful that I am!
1. Remain patient and try to not let this disease control my life in a different way than the pain has in the past.  Any free time I have is spent researching my illness to the point of exhaustion. This puts a tremendous amount of stress on my body and mind and is not healthy for me.  The need to incessantly research stems from my distrust in doctors and my drive to feel healthy again.  I'm working on finding a balance between taking care of myself, researching all things Lyme, my social life, my babe, and work.  

2.  Currently I'm jumping through hoops trying to get a $699 mycotoxin test covered by insurance so that I can see which toxic molds I have been exposed to.  Once I figure that out I will be going through a rigorous toxin elimination protocol.

4.  Get a second opinion from another Lyme literate doctor and most likely move on from my previous Lyme doctor of two years.  Mainly for financial reasons and trust in myself that I am moving in the right direction. There is a Lyme doc in Canada that is well equipped to treat environmental health concerns and Lyme disease.  This does lead to the problem of getting prescriptions in the states filled and I'm working on that one.

5.  Continue to do whatever I assume necessary in order to get to 100% and focus on how much more healthy I've become than before Lyme.  Prior to Lyme I would not have known I have a genetic mutation that can cause serious ill effect on the human body and can be managed.  I would not have given up inflammatory foods like dairy, gluten, grains, and sugar.  Honestly, I've learned so so much about the human body and it feels phenomenal to know mine the way I do.  I'll keep learning and continue to practice credible habits that I would have deemed as frivolous pre-treatment.

I want to thank everybody who has stuck by me during treatment, for those of you close by or far away.  Your encouragement keeps me going during the times I want to give up and when I don't think I can handle anymore.  It has not been easy and it is not over.  Thank you for understanding that I am doing my best and for educating yourself about Lyme for my sake and yours.
Love You

*Something to remember.  Don't forget about other health related things.  It's easy to overlook health concerns when you are constantly focusing on all things Lyme. 


Thanks for reading,