Wednesday, November 4, 2015

One Way

Along the access road at Red Rock Canyon near Las Vegas, Nevada

Lately it seems as if my fight against Lyme and co-infections is going one way...the wrong way. It started about three months ago when all of the sudden my high of feeling the best I felt in years did a brisk turn for the worse. Since then I have been heading downhill, regaining many of the debilitating symptoms that plagued me early in my diagnosis.  No one but my closest friends and family really knew this as I don't usually talk about it publicly. I plaster a happy face on and try the best I can to live as close to a normal life as possible while behind closed doors I cry and struggle to dress myself, wash my own hair, or drive due to the level of pain I deal with on a daily basis.

Then came the trip to Vegas. I knew I wasn't feeling my best, and against my better judgement, I really pushed myself and ended up in the hotel room bed, sick for the last two days I was there. I was completely incapacitated and almost couldn't make the flight back to Baltimore. Not the smartest move ever.

In the two weeks I've been back I've seen my doctor yet again and have again changed up my treatment plan. Our options are getting thin, kind of like the Raven's depth chart (had to throw in a bit of football humor in there) because I have not responded to many of the treatments and I am allergic to many antibiotics. We've almost run the gamut of choices as far as treatment options goes. So, hopefully this combination of herbals, supplements, and medications will be up to the task of making me better. 

Nearing Red Rock Canyon during our tour in these three wheeled scooters

In the meantime, I've had some genetic testing done and the results were depressing. It turns out my treatment is even more complicated because I have a homogeneous (double from my father and one from my mother) MTHFR A1298C gene mutation which basically means (from what I understand so far) that my body can only get rid of toxins at an efficiency rate of 7%-10% of a person who has no gene mutations. Toxins include the dead Lyme and co-infection bacteria, heavy metal exposures, pesticide exposure, pollutant exposure, etc. Since I can not efficiently rid of these things from my body, it continues to build up in my system and make me sicker and sicker. It can also increase levels of inflammation in the body, and decrease mineral absorption, both of which is NOT helpful in my recovery. There is more scientific mumbo jumbo to it that is over my head right now, but so far that is what I am understanding.  So....this mutation could very well be another roadblock to my full recovery. If you are fascinated by this, feel free to read more here. The good news is my doctor is aware and on-board with researching what this means to better my treatment. He is smart and caring and knows exactly what I am going through which is more than I can say for every doctor I had seen for the two and a half years prior to getting diagnosed.

That is not the only gene where I have a double mutation, I found out to my dismay, but I have no idea yet what the implications are for those specific genes. Now I am worried that I passed down the mutations to my children and wonder what the health implications may be for them in the future.

And to kick me while I am down, I received a letter from my insurance company stating that they will no longer cover the ONE prescription drug I take simply because I take it in a much lower dosage than the "normal" dosage and therefore order it from a compounding pharmacy. I only take ONE pharmaceutical medication (the rest I take are herbals or supplements) and they refuse to cover it. Unbelieveable.  Then what good is all of the thousands of dollars my husband pays into our coverage?  They pay for NOTHING related to my Lyme treatment.  Not.  One.  Red.  Hot.  Cent.

So, the bottom line is I have not been around as much as I'd like to.  Exhaustion, pain, and a downright pissy mood has kept me isolated and hiding for much of the past week.

I will take this opportunity to thank everyone who called, texted, emailed, visited, messaged, or wrote on my private Facebook wall checking in on me.  Your concern, your encouragement, and your love are very much appreciated.  And while I couldn't possibly personally respond to so many of you individually, I hope you know that my heart swells with your prayers and love and you are heard and appreciated beyond measure. Some days I can't even summons a voice for fear of breaking down into a hysterical sob so I just don't talk at all (Elizabeth!).  Just know even if I don't call or respond, it is not out of lack of friendship, it is a lack of ability to form a voice through the tears.

I won't promise updates at this point...I just don't know when I will feel myself again, so I will post when I have energy for it.  In the meantime, I am sending my love and well wishes to all of you!  Hoping fall is being kind to you and I hope to be back up and running again soon.  xo

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