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.

Tuesday, December 20, 2011

The 99% w/ Lyme: Ticked Off and Shouting!!

Life has been hectic the past few months. I seriously have been more busy since getting sick than I ever was before. From the horrifying reality of my diagnosis with Lyme Disease to the difficulties and complications of treatment and the emotional fallout of both, I have channeled all of this negativity and darkness into something that is actually helping people, including myself. 

There is such a lack of education about Lyme Disease, the atmosphere surrounding this ever-growing epidemic rife with urban legends and purposeful misinformation, that it comes as no shock to me that Lyme is running rampant with no decline in sight. 

Since beginning my journey into Lyme advocacy I have met so many people with Lyme or who believe that they may be suffering from the disease, there are times when I just want to break down and cry. So many lives destroyed and so very little that is being done by the mainstream medical establishment- it is enough to make you want scream at the top of your lungs! 

This is partly the reason for my nearly two month disappearance from the internet. Everywhere I went I was coming into contact with heart-wrenching stories of families torn apart and lives forever changed, even lost. It all became to much for me to deal with, so I had to extract myself from the situation and reorganize my thoughts so I could return to my advocacy work with a fresh mind and more stable sense of self. 

The culmination of this personal collapse was the highly emotional experience of protesting the IDSA at their national conference in Boston, MA on October 22nd, 2011. It was an amazing day, that I will remember always, but also brought up feelings of uncertainty and anger, at how this disease could have been allowed to go this far and damage so many and how anyone, let alone a person in position of power, could willingly deny millions of people a fair chance at a healthy life. It’s frustrating even to think about it and a reflection of an even broader problem that is currently effecting 99% of Americans, especially the sick. 

I will be frank in my opinion- the American medical establishment is a complete and utter failure, built on a reliance to cookie-cutter diagnostic guidelines and pharmaceutical force-feeding. I refer to this as “Meat Market” medicine, where the process of treatment has largely become a homogenized and impersonal experience. 

Patient enters, problem discerned from a predetermined list, prescriptions given, patient is sent home- rinse, repeat. 

Anything that occurs outside of this cycle is considered suspicious or disruptive. 

Doctors are no longer the ones making the decisions that are supposed to benefit your health. That role has been taken over by the insurance companies, who make their “medical” decisions based off of what is more cost-effective to them, rather than what is better for the patient. 

It is incredibly disheartening when you are now capable of receiving more adequate and thorough treatment by your pet’s veterinarian than from your own primary care physician. How very sad, but completely grounded in reality. 

Modern medical ethics are being swallowed up by the corruption of corporate greed and it is taking us all down with it. Many may disagree with the idea that corporations are at the center of the problem that is plaguing mainstream medicine, but the evidence points nowhere else. 

When a nation’s Congress owns stock in the very pharmaceutical companies that are increasingly limiting our access to affordable medicine and organizations dedicated to “public safety” now spend most of their time deceiving the public they are supposed to be protecting, there is something very wrong indeed. 

There has to be a change in our current medical establishment if there is ever going to truly be “equal access to care for all”. The conflicts of interest at play in institutions such as the IDSA, CDC and NIH by themselves are enough to scare the hell out of anyone, let alone what is at play behind closed doors in relation to the insurance companies and Big Phrama. 

The value of a human life shouldn't ever be measured by whether it is cost-effective or not. Everyone, no matter who they are, deserves access to the best treatments possible and purposefully denying such equal access is a crime! 

We are not invisible, We are not going away, We will not be silenced!