Saturday, February 11, 2012

Paper People and the Statistics of Living.


After months of working towards the full dose of my antibiotics, I have finally arrived there- one week and going strong! I have also really outdone myself this month in terms of trying to scrape together the best dietary setup I can. I’m trying my best to buy free-range and organic meats as well as all natural and gluten free meal items and snacks. From here it’s simply trying to eat better and working my way through whatever the full dose of Ceftin might bring my way. Likely a horrible herx for at least a little while, but hopefully detoxing will help with that. For right now I am going to stick with my lemon water, liver function tea and detox baths and work on improving that over time. 

I am also still not taking the entire “protocol” that I’ve been prescribed, as my body simply could not handle all of the various medications and supplements my LLMD wants me to take starting all at once. I am now on under half of those, with more being brought on board every month. 

February brings the introduction of Allergy Research Group’s Prima Una De Gato (Cat’s Claw), starting with the minimum dose and hopefully working my way up to the prescribed amount by the end of the month. This is to be followed by Biofilm Defense from Kirkman Labs in March, a supplement that was meant to be started awhile back, but has been delayed multiple times for a variety of reasons. 

From that point on all I can do is hope that I see some sort of improvement, although my LLMD has yet to touch on a number of other issues, such as treating my co-infections and dealing with the many related issues that come along with Chronic Lyme, such as heavy metal toxicity, mold and other causes of immune system dysfunction. 

Alongside new medications February has also been home to a very important doctor’s appointment, one that was surrounded by tension and doubt from the very beginning- for good reason, but more on that in a minute. 

You see, due to the progressively worsening neurological dysfunction that I have been experiencing since being diagnosed in 2010, I have been referred by my primary care doctor to see a neurologist quite a distance from where I live.  All fine and dandy, but upon visiting the medical building where he houses his office some weeks back I found out that he shares his office space with an infectious disease practice, which did not work towards imbuing me with any sort of confidence. In fact, it only deepened further what reservations I already had. 

In the end, my doubts were sadly warranted- the neurologist did nothing but stonewall me and make it clear that he does not believe in Chronic Lyme Disease.

I provided him with the benefit of not bringing up Lyme until after he had reviewed a timeline of my symptoms that conveniently left out that diagnosis, but I also could not be dishonest about what medications I am taking. This lead to the obvious question “What are you taking the antibiotics for?” and from there the appointment might as well have been over.

I told him the truth and as so often is the case in the world of medicine, he treated me no better than a walk-in might be at a free clinic. The appointment became the same old song and dance, the “I don’t know what’s wrong with you, it’s not Lyme, but I have no answers for you, but it's certainly not Lyme Disease”.

After around an hour of wasted time, an hour I can’t ever get back, he proceeded to deduce nearly two decades of symptoms and in particular the neurological symptoms that I have been dealing with, down to two simple explanations:

Diagnosis: My periodic facial palsy is likely due to migraines.

Fact: For one, I don’t actually have migraines, I list them as such on my forms due to not really having a diagnosis as to what type of headaches I actually suffer from. You would think that a doctor with even a basic understanding of neurology, let alone a specialist in the field, would be able to discern this from my paperwork. 

Diagnosis: The loss of sensitivity I have been experiencing all over my body, which includes my face is probably due to Diabetic Neuropathy. Nerve testing might be worth doing, but likely will not garner anything of value medically. In fact, no tests at all will likely garner any information of worth. Essentially: Shut up and go see a therapist!

Fact: While I don’t have the best diet at this point, I am working on that, my glucose tends to remain within normal range and my A1C level has dropped from 9 all the way down to the 6% range as of a few months ago. Regardless, I suffer from no Diabetic complications other than the occasional issue with yeast, which is not helped by Lyme Disease and co-infections, especially when taking antibiotics. Also, I was suffering from strange neurological issues long before ever becoming Diabetic.

Just a quick glance online reveals that both of these approaches to my current health situation, especially when factored together with my specific circumstances are completely illogical, especially given that both instances seem to occur on a relatively uncommon basis.

I understand that his specialty is neuromuscular diseases, however even primary care doctor would not completely overlook an entire list of symptoms , spanning years, just because not every symptom doesn't fit his specific field. To no surprise of mine, however, this is exactly what he did- playing dumb and working quickly to get me out of his sight and if it wasn’t bad enough, he also said he couldn't really take my “word” for it, because there was no other evidence of anything I had to tell him.

I can’t help that my primary care doctor puts herself at risk for review if there is any mention of Chronic Lyme in my files, so therefore there is none and what is mentioned is vague.

I can also not help that what doctors I have seen have either ignored me completely, treated my like an psych patient with an incredibly detailed psycho-somatic illness or have simply been too afraid to confront this monster of an epidemic that is currently gnawing at their front door.

I put a human face on a disease that so often is easily dismissed. It makes it much harder to deny when you have a living example sitting right in front of you. This humanization of Lyme most of the time is simply too much for a Lyme-biased doctor to handle and therefore it is better that I be banished from their sight. 

The realization that I deserve a right to a better quality of life, just like anyone else, hasn't yet seemed to have crossed their mind.

I’m not just a name on a piece of paper.

I’m not just another statistic to be filed away.

 
To all of the medical professionals out there, who see individuals like myself everyday and deny us the right, not privilege, but the right to proper medical care, know this:

Our blood is on your hands. Go home tonight, sit down with your family and tell them how many patients you have turned away, tell them how many families don’t have their loved one like they used to because you feel that the status quo is more important than allowing your patients their basic human dignity.

Then let us see how much respect they still have for you.

What you do and say doesn’t just stop once we leave your office. It walks out the door with us and effects many more than just the “insurance claim” that comes to you from the waiting room. 

Keep that in mind the next time you think of saying "It's all in your head.".

Sincerely,
One of Many