Wednesday, December 28, 2011

Under the Fist.

Currently life is a day-to-day experience of questions. My body is a mystery, shrouded in unknowns. As I have begun to learn the extent to which Lyme Disease has damaged me and continues to do so, I sometimes slide into moments of fear.

Right now I am truly under the fist of spirochetal tyranny- with a body too weak to treat as aggressively as I’d like and a labyrinth of infection and complications that I simply wish to be rid of.

In my anger I want answers NOW!, I want a cure NOW!, but I know with firm logic that this is not a possibility at the current time.

Unlike in earlier entries of this blog, in recent months my medical updates have been few and far between, mostly because I have been so busy, but I will try to make a concerted effort to keep you all updated from here on out.

So, to begin, starting in August I began seeing a new LLMD, after taking a year break from seeing any sort of Lyme specialist, given that my first one was a complete disappointment.

This time around things went a lot better and I actually felt like I was being listened to, getting somewhere, instead of standing still month by month. On my first appointment I was tested for Lyme Disease via IGeneX, which I had been wanting to do for well over a year, but simply didn’t think I could afford. To my astonishment, aside from a small fee, I had IGeneX Lyme and co-infection testing done along with thousands of dollars worth of other tests, for next to nothing.

My tests results revealed the following:

Lyme Disease, IgM: 23-25, 41, 58: POSITIVE

Lyme Disease, IgG: 31 IND, 39 IND, 41 , 58: NEGATIVE

Babesia: Equivocal Positive
Bartonella: Equivocal Positive
Ehrlichiosis: Equivocal Positive

My non-infectious disease test results also revealed that I am positive for two Celiac antibodies and thereby considered gluten sensitive. I am also deficient in Vitamin D, which is not surprising at all. I haven’t been able to get my Vitamin D levels up for years, despite continuous and periodic high-level supplementation.

The Celiac antibodies came as a shock to me, as was the equivocal nature of my Ehrlichiosis test.

With all of this information gathered together, it was discerned that I be placed on 200 mg of Ceftin twice a day, along with a laundry list of supplements. 

Fast forward to the New Year and I am still struggling my way through said list and fighting to take even half the dose of my prescribed antibiotics. With the extreme herx reactions I suffered from while on a two month treatment of Doxcycline in 2010 (resulting in what can only be described as two mini-strokes), I have been understandably conservative in my approach to introducing antibiotics into my system once again. 

However with the encouragement of my LLMD as well as family and friends I am continuing to push forward despite my reservations about diving into treatment with as much aggression as my treatment team would like to see.

Alongside Ceftin I have also been told to take Cat’s Claw and Biofilm Defense, which I am slowly working towards adding to my treatment schedule, with new items from my supplement laundry list being added in periodically as my system is able to tolerate them.

I also continue to fight with my eating habits to create a more functional and healthy diet, with hopes of being at least 50% gluten free and 25% dairy free by February 2012. The holidays behind me and temptation at all-time low I definitely hope to see some changes made. With such profound fatigue always biting at my heels I often it finding overwhelming to do anything more than walk to the fridge, let alone cook, so I am going to put my best foot forward to come up with a successful plan to limit my interaction with food, while also creating a well-rounded eating plan. Cheers to a (hopefully) successful outcome!!

The close of 2011 leaves me with just as many questions as 2010 did and starts with an MRI, followed by an appointment with a neurologist, due to my neurological condition having declined significantly since my first inquiries into the subject nearly two years ago. A multitude of neuro complications have progressively made themselves known, with a summarized explanation of “Upper Motor Neuron Damage”. Attempts at researching this description I have now realized are best avoided as the information provided ends up causes more strife than any knowledge learned.

Where 2012 will take me, who knows, but for certain this Lyme journey of mine still has many twists and turns to come.

2011 retrospective to be posted soon.

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