Doctor, Doctor - Give Me the News: Getting a Diagnosis of Lyme Disease...

TODAY'S MENU
What's Up Doc?
The Politics of Medicine
Enter the Blood-Sucking Insurance Companies
Life & Times of a Gal with Lyme

What's Up Doc?
Obtaining an OFFICIAL diagnosis of Lyme disease often proves difficult. Most people with a diagnosis of Lyme disease have been diagnosed with a number of other ailments before finally getting it. See my previous post: The Basic Symptoms.

Some people have mysterious symptoms that can come & go - and because most doctors don't always think "Lyme disease" first - they test for other things. Often tests come back "negative" or "inconclusive" meaning that the doctor hasn't really learned anything from the test, other than what it is not. Some doctors will continue to search; others may try to ship you out to "specialists"; and others may label you with something like "depression" simply because they have no idea what's going on with you, and they'd rather just treat you for that & see if it works than to say, "I'm totally clueless."

A diagnosis of depression is not always wrong - because anyone who feels like dog shit for a long period of time may certainly feel depressed. I'm thinking that's kind of a natural response, don't you? But depression doesn't always explain the other symptoms like low grade fevers, shooting nerve pain, burning sensations, tremors, blurry vision, headaches from hell, etc., etc... Again, see my previous post: The Basic Symptoms.

Collect a few "depression" diagnoses - and little more - and some may start to feel like they are a candidate for a mental institution. Having "mystery" symptoms that can not be easily explained away by the medical community can leave one feeling like a bonified basket case.

Years & years ago, I went through a period of at least 6 weeks where I experienced a severe cold & numb-type sensation on one side of my face and in my hands. I don't recall a lot about that time - other than it being rather traumatic for me. I do remember spending a good deal of time with my hands & face on the clothes dryer just crying because of the damned cold & pain and because my super-neurologist couldn't figure out what was wrong with me. I thought for sure I was losing my mind.

Little did I know at the time, my neurologist's reports to my then primary care doctor indicated he thought I might possibly have the beginning symptoms of Multiple Sclerosis (MS). Unfortunately, he did NOT tell me. (Neither did my former primary doc...) I left his office that last day feeling miserable physically AND emotionally.

Unrelenting pain that has no medical validation can do lots to 'F' with your mind. It's really difficult to not give into the self-doubt. There were times that I thought, "Maybe my aunt whom has called me a 'hypochondriac' over the years is right? What if I'm just a pathetic hypochondriac? What if I'm just making this pain up in my mind? What if I'm just crazy as shit? And do crazy people KNOW if they're crazy?" The mind 'F' can be endless.

I think most doctors just don't understand what their lack of time, attention, or education can do to their patients - not just physically - but mentally as well.

But I don't entirely blame the docs. Don't get me wrong - I've had some docs over the years that have literally just sucked! But many have just fallen short of what I needed - and I think it's easy to forget that doctors are fallible humans too. It took me a long time to realize that one. I hated that discovery too because I then started to think: What if they're just as crazy as I am?! God help us all!

But I don't think that just docs are to blame...

One of the inherent problems in our medical community today is the fact that most doctors have to see about 30 patients a day just to feel like they're making a profit. I would venture to guess that many medical practices today are really driven by insurance companies. For those people with any "mystery" symptoms - I'm not telling you anything new.

Insurance companies dictate how much a doctor can charge for services, and doctors, being smart people, can do math. They must see a minimum number of patients a day in order to pay their bills and to justify their decision to go into medicine..instead of other lucrative fields like law, politics, or plumbing. I recently had a doctor tell me that they can spend usually no more than 8 minutes with each patient.

8 MINUTES? It takes that long for me to feel like I've adequately bitched about how crappy I feel! It's no wonder that a disease, with such a variety of symptoms, can go "un-diagnosed" for YEARS!

The Politics of Medicine
Perhaps one of the most significant reasons why it takes SO damned long for a person to receive the diagnosis of Lyme disease is that most doctors don't realize that the Center for Disease Control's (CDC) criteria for a "Lyme disease" diagnosis is based upon criteria developed for the mere purpose of epidemic SURVEILLANCE! Most docs - and remember they're fallible humans - don't realize that the diagnosis of Lyme disease should be a CLINICAL diagnosis - based on symptoms and examination.

A good majority of doctors send their patient's blood off to insurance-approved labs to be tested for Lyme disease. Most of these insurance-approved labs obtain their criteria to determine whether the blood sample is Lyme "positive" from....can you guess...the CDC!!!

But if you look far enough...like on the CDC's website: http://www.cdc.gov/ncidod/dvbid/lyme/casedef2.htm
you can see that even they FINALLY realize that Lyme disease must be diagnosed primarily from a clinical perspective.

"Comment: This surveillance case definition was developed for national reporting
of Lyme disease; it is NOT appropriate for clinical diagnosis."

If you're really interested in learning more - check out their website - it's at least "interesting".

So if the CDC KNOWS this - why aren't they educating the docs?

Hell if I know! The only idea I have right now is cynical, at best. I'm thinking it is because they realize there is no definitive CURE. I'm thinking they're reasoning is probably:

"Hey - why should we freak the people out? If it's based on a clinical diagnosis
then more people will realize they've been infected. More people will realize
that we've got an epidemic on our hands and we don't know what to do about it."

This is my pure speculation, and I think I've already covered most of this in my previous post: Lyme Disease is an EPIDEMIC, but because memory problems are another symptom - I'm having a hard time recalling. I guess I could look it up and read what I wrote, but as you can surmise...I'm busy writing.

So if the CDC knows that most insurance-approved labs aren't revealing a "positive" on the Western Blot (a widely used test for Lyme disease) because they're basing it on the CDC's criteria for SURVEILLANCE and not DIAGNOSIS...why aren't they telling them to change it? See above paragraph.

I hate to break it to you...and please don't think me unpatriotic - but the CDC doesn't give a rat's ass about your ass. Don't take it personally. It's a government thing.


Enter the Blood-Sucking Insurance Companies
With Lyme disease - it's not just the ticks that are out for blood.

I know it comes as no surprise to most, that insurance companies generally don't want to pay for anything they can get away with not paying. That wasn't a well-constructed sentence. I'm getting tired at this point....just as you're probably getting tired of reading all of this crap.

Anyway - here's the deal. If the insurance companies continue to only "approve" the labs that are following the CDC's SURVEILLANCE criteria, then it is really in their best interest to stick with those labs.

Why? Because treating Lyme disease is costly. There's no definitive cure for it, and what is out there certainly isn't quick! So as far as the insurance company is concerned - you can continue to go on having those mystery symptoms. It's far cheaper for them to pay for your anti-depressants and maybe 30 visits to a "shrink" each year than to pay for up to 4 years of various antibiotic treatments. Antibiotics (the good ones) are expensive.

Get it? It's all about money once again. Time AND Lyme equals money.

Insurance companies generally don't give a rat's ass about your ass. But don't take it personally - it's just a insurance thing.


Life & Times of a Gal with Lyme
As I mentioned during one of my first posts: My Reason to Blog I want to keep a record of this, my healing journey. So...I should probably let you in on what's happening - as if you really care. (And don't worry, I don't take it personally if you don't give a rat's ass about my ass.)

Right now, Dr. C is the doctor that is treating me for my Lyme disease. You remember him from my previous post: The Sporadic Rant from 1/6/2005.

Anyway - Dr. C is the doc I went to see for my chronic fatigue & fibromyalgia symptoms & he's the one that discovered & diagnosed my Lyme disease. HE sent my blood off to a specialty lab that uses equipment & criteria that is sensitive enough to discover if there are antibodies to the Lyme bacteria, 'Borrelia Burgdorferri' - indicating a POSITIVE presence for Lyme disease. (I'll talk more about labs & testing later...I'm really whooped.) Suffice it to say, I had to pay out the ass for this lab test from this lab that isn't currently approved by my insurance company... hmm...curious. But at least now that I know what's been causing my 20+ years of waxing & waning mystery symptoms - I'd say it was worth it!

Anyway - Dr. C. is now treating me with a homeopathic product called Samento.

Dr. C doesn't want to treat me with long-term antibiotics because he feels that wouldn't be in my best interest. He explained it to me at length, and even let me talk with another patient of his who had already went through YEARS of being treated with antibiotics to no effect.

At this point I'm confused, and frustrated to say the least. I understood Dr. C's point of view, and I understand that he is passionate about WHY he believes what he does. I just don't know at this point if I have the faith that this "alternative" remedy is going to cure what mainstream medicine is having a difficult time doing. It's not that I have a lack of faith with regards to the ability of nature to heal...it's just that as far as my personal research up to this point - it seems the only thing PROVEN to kill bacteria is antibiotics.

I know, I know what some of you are thinking and you're right. Some of the "natural" cures haven't been PROVEN by the FDA, the AMA, or any other of the big "A's" to cure certain ailments because there are no drug companies paying out the ass to do the research to hand over to the FDA...because drug companies can't monopolize nature...and therefore can not reap the profits!

Anyway - back to my current treatment. It's so easy for me to get side-tracked...

One of the signs that an anti-bacterial medicine, (or an antibiotic) is working at killing Lyme bacteria is that you start to feel worse. It's called a "Herximer reaction" - most just call it a "herx" for short.

According to Dr. C - it's best to start out slowly on Samento (which is a special form of the herb Cat's Claw - I think). It took about a week & 1/2 for me to work up to a dose that has started making me feel worse.

I stayed in bed most of yesterday because I just felt miserable. When I feel miserable I'm generally not very fun to be around....OK, I can behave like a real bitch sometimes. I know that's probably shocking.

My husband stuck his head into my darkened cave of misery(the bedroom) when I was crying and feeling sorry for myself and reminded me that this is probably a good sign that the medicine is working and that I should be HAPPY!

Happy.

Right.

OK, OK. I now have a new requirement for feeling happy....I must feel like shit.

Interesting.

Well, I'm happy to report that it's past time for my nap...'cause I feel like SHIT!

Stay tuned....