The Biggest Mistake I've Made

In my quest to regain my health throughout my Lyme disease treatment.

I remember finally getting my diagnosis in November of 2014, it had been four years after becoming ill.  I had a list of symptoms you can view here:  http://brewlifewithlyme.blogspot.com/2014/10/okay-turns-out-im-not-so-well-ish.html  and a mind frame that once I killed the bacteria in me, I would be home free!  I even thought there was a cure.  Everybody has there own way of dealing with their diagnosis and so do the people close to them.  My way of dealing was to imagine those mother fuckers dying off one by one and envisioning myself moving on with my life.  So that's what I set out to do.  I found an aggressive Lyme literate doctor in Seattle who gave me massive amounts of abx in quantities that 200 pound men would take, and I asked for more.

I'm writing this because I wish I was told this from other Lymies when I began treatment.

My improvements from treatment thus far are drastic. Unfortunately, symptoms of Lyme or a co-infection are returning after roughly 4 months of getting off antibiotics.  I'll get to that.  But the number one mistake I made was to assume that everything going on in my body was because of the Lyme disease.  In a sense it was.  Without Lyme I would never have had these other diseases and illnesses.  From the beginning I assumed that with Lyme treatment all my symptoms would go away but what I discovered is that Lyme disease triggered a cascade of diseases and issues in my body that were no longer caused from the actual Lyme bacteria. These things then triggered even more symptoms that were unrelated to Lyme but easily confused with Lyme.  After going undiagnosed for 4 years many many issues arise for the genetically predisposed population of Lyme disease suffers.  For some, Lyme might be the only thing that is going on, but like I've said in the past that's highly unlikely.  If you can get to the point where you have full blown Lyme disease, there are a host of likely genetic factors taking place making things much worse for you.  It is all very very complex and there are very few medical professionals out there who truly understand it all.
Myself and my previous LLMD wasted a lot of time thinking all my symptoms were Lyme related only for me to end up finding out 2 years into treatment that I had other major issues effecting my immune system, body, and eyes. Those issues absolutely need to be diagnosed and treated in order to get well.

Part of the reality is that I didn't think I was a complex Lyme case from the beginning.  I wanted to take my meds, regain my health and share my journey in the most positive way I could. I also wanted to give those suffering hope, and enlighten others who may not know the effects of a single tick bite. I feel as though I've let you down but I also realize I'm writing my own story here.  I've had to sit back and take an honest look at my health over the last few months and I am not doing well.  I'm functioning in the world but there is not an hour in a day that goes by that a symptom isn't ailing me.  I'm still fighting for normality though and I truly know I'll get there, it just takes time.  Most with Lyme realize this but I was too far in denial to believe or admit to myself how sick I really was and the repercussion of that is now clear to me.  As an actress I started to believe my own portrayals of the healthy person I tried to project to the world.

I urge those of you beginning treatment to find an LLMD willing to look into all aspects of this illness, or find multiple doctors to treat each individual issue you may have.  It is the only way to get better from this disease.  I understand that this can be a challenge due to finances, travel distance to a competent LLMD, and the sheer fact that regular doctors have minimal knowledge on the topic.  Most docs do not understand what's going on in the bodies of Lyme patients; nor are they even willing to believe Lyme exists or is the cause of anything.  It's truly sad and damaging to the spirit but the one way I have found success in this area, is to talk.  I was able to find some people here in my new city willing to help out because I shared my experience and was referred around.  Keep sharing your experiences and stories it opens up doors and there are pharmacists, doctors, and ordinary people out there who can and will help you or lead you to someone who will.

Here's what's new with me:

I recently moved far away from my new LLMD in Canada and my amazing primary care doctor, (at a normal medical facility) who rewrites my prescriptions in order for them to be filled in the states.  This has been somewhat of a challenge for me but both docs are continuing to help out over email, Skype, and phone calls.  This does not feel safe for me right now but it is my only option at the time.

A New Disease!

I say this not with excitement

Finally after 8 years I have been diagnosed with the bubble disease.  Mast cell activation syndrome, this disease was brought on from Lyme and has a genetic component for me. You may have read about those rare people that can't leave their house due to allergies, my condition is similar.   Mcas or Mastocytosis is a rare disorder characterized by abnormal accumulations of mast cells in the skin, bone marrow, and internal organs. Mcas in myself seems to be triggered by mold exposure, chemicals, certain abx, and a number of food items.  I also have reason to believe it is triggered from something within my body.  Maybe Lyme endotoxins, yeast, or hormones.

In order to suppress the constant state of allergic response in my body I have recently begun taking:
Cromolyn Sodium in liquid form 4x a day to prevent allergic reactions and stabilize my mast cells.
Loratadine 10mg 2x a day
Zantac 1x a day.
These drugs will block all the H1 and H2 receptors and stabilize mast cells.  I have been on them for about 2 weeks and the difference is truly remarkable.
Being diagnosed with mcas is a huge step towards a positive direction in my health.  Now that my immune system is getting support, it can hopefully function better for me.
LDA injections every 2-3 months to help reduce allergens.

One of the best sources of information on mcas is here:  http://www.jillcarnahan.com/2016/10/31/mast-cell-activation-syndrome-mcas-when-histamine-goes-haywire/
Please read up if allergies and mold toxicity have been a large part of your illness or if you're a non Lymie but have chemical sensitivities or major allergens.  This disease is a lot less rare than medical establishments lead you to believe.

Lyme  Symptoms Are Back

I have been off abx for about 4 months and by the fourth month I have begun to demonstrate a multitude of symptoms that could be Lyme disease or a co-infection.
Symptoms are much stronger and intolerable the week before my period and more tolerable or gone all the other weeks.  My eyes continue to bother me daily.  Symptoms that have come back in the correct order:

--Aching knees in the evening and sometimes throughout the day.
--Burning, red eyes.  My eyes are always messed up, but they stay consecutively red for the week before my period.  They are in no more pain than usual.
--Muscle twitches in any and every muscle randomly.  Not twitches that keep twitching in the same spot.  They migrate and are very minor and painless, just annoying.
--The dreaded neurological symptoms.  Losing my train of thought, marbles in my mouth or messing up words.  Saying the wrong word.  
--It feels like things are running around under my skin.  Yeah I know, sounds weird.  Only way I can describe it.  Also heat under my skin.
--Lastly, huge lymph nodes around my neck.  A sure sign an infection is active and boy can I feel this one.  I'm pretty much knocked on my ass.

I'm not happy about this but unfortunately this is the reality of Lyme disease.  It's incurable and my immune system is obviously not ready to fight it on it's own. I still have hope after 8 years of being ill that one day it will.

Mycotoxin Illness:

I am still being treated for mold illness, although I'm off Cholestyramine.  The thyroid interruption and weight gain is not worth it right now.  I have been getting some exposure, as many buildings and homes have hidden mold.  I have taken several job offers in my new city only to quit a few days later due to the building making me sick.  It's probably the most insane thing going on in my life right now and in order for me to not lose my mind over it I remind myself that I'm really lucky to have figured this all out. There are a lot of people suffering from mold illness who will never understand it or get the help they need.  Hidden mold is my superpower.
Currently taking charcoal and rice bran for binding.

My plan: 

My LLMD wants to wait three more weeks before we talk because he says that my symptoms can tell him a lot.  I agree.  We can determine if this is Lyme or a co-infection and figure out what treatment will be needed. I will be visiting him in person in a week.

My Rant:

The problem I have here is that most people that have huge lymph nodes and a flu-like feeling get to go to a doctor, get meds, and stay home from work because they are ill and their bodies are trying to fight an infection.  But not me.  I have to put a pretend smile on, act like I'm fine, and go to work.  This is what having a chronic illness is.  I ponder if I should change my name in case I'm googled by future employers.  But you know what, I chose awareness and I get to make change happen and do something I'm passionate about in my spare time.   And that is fucking awesome!

My YouTube update video!

Never let YouTube help you with a diagnosis.

Thanks for reading!  Don't hesitate to contact with questions.

BECKY