Just the Facts...With a Little Bit of Piss & Vinegar!

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Lymie Newbie
The Basic Symptoms
Lyme Disease is an EPIDEMIC
The Sporadic Rant


Lymie Newbie
For the benefit of those whom are newly diagnosed with Lyme disease, or others whom are interested for whatever reason, I will try to simplify the “basics” as it applies to this disease. Before I do, however, I would like to present a disclaimer. If I’m wrong about some fact, or if I forget to cite a source, please know it’s not because of some malicious intent on my part. I would kindly ask that you give me a damned break. Remember: I am experiencing the limitations of Lyme disease at this very moment. I am using what energy I have right now to sit up in my bed & type this crap up! {If I were actually computer literate and knew how to insert audio clips, this is where I’d want to insert some tearful music - maybe some 'blues'…just use your imagination.} I’m doing this mainly for the benefit of people like my mom who want to know more, but don’t have the time to do intensive medical research… AND I’m doing this for me because I just need to cognitively vomit this stuff back out so I can convince myself that I understand it…and because it’s a way I can entertain myself.


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The Basic Symptoms
First of all, Lyme disease sucks.

For those of you that have it, I probably didn’t have to tell you that - that declaration was mainly just to validate that fact to any Lyme “supporters” actually taking time out of their busy lives to read this crap.

Second, Lyme disease has been called the “great imitator” because it has so many varied symptoms that most people aren’t given a correct diagnosis. Here are most of the main symptoms:

Fevers; sweats; chills; flushing; unexplained weight change; fatigue; hair loss; swollen glands; sore throat; pelvic pain or testicular pain; unexplained menstrual irregularity; irritable bladder; unexplained breast pain; sexual dysfunction; loss of libido; upset stomach; abdominal pain; constipation; diarrhea; chest pain; rib soreness; shortness of breath; cough; heart palpitations; pulse skips; heart block; joint pain or swelling; joint stiffness; back stiffness; muscle cramps or twitching; headaches; neck pain, stiffness or creaking; tingling, numbness, burning or stabbing sensations; shooting pains; skin hypersensitivity; facial paralysis; blurry, or double vision; light sensitivity; ringing in the ear; ear pain; sound sensitivity; increased motion sickness; vertigo (dizziness); poor balance; lightheadedness; tremor; confusion; difficulty in thinking; difficulty with concentration or reading; forgetfulness; poor short term memory; poor attention; problem absorbing new information; disorientation; getting lost; difficulty with speech or writing; word or name block; mood swings; irritability; depression; disturbed sleep.

That seems like an unbelievable list, I know! But don’t take my word for it – check out the International Lyme And Associated Diseases Society (ILADS) for more detailed info on symptoms.

Because the list of symptoms are so diverse, many people waste a lot of time going from one doctor to another, collecting diagnoses – many incorrect. Lyme disease can mimic as much as 200 other diseases. Because of this, it’s easy to see why Lyme sufferers have been told they have:

Multiple Sclerosis; Systemic Lupus; Infectious Mononucleosis ; Amyotrophic Lateral Sclerosis (ALS) also known as “Lou Gehrig’s disease; Chronic Fatigue Syndrome; Fibromyalgia; Alzheimer’s Disease; Guillian-Barre Syndrome; Parkinson’s Disease; and Trigeminal Neuralgia....just to name a few!

See! I told you it sucked.

And speaking of sucking, if you happen to notice that you’ve been sucked on by a tick, you’re going to want to gently remove that little bastard with some tweezers, & baggie it up for your doctor, who probably won’t know what to do with it – but it sounds like pretty legitimate advice, doesn't it? As difficult as it may be, resist the urge to squeeze the life out of it - ticks can be tested.

If you have been bitten by a tick and can get antibiotics quickly, you have a better chance of a full recovery, and a better chance that you won’t have to endure that above list of collective misery.

Most people don’t even realize when they’ve been bitten by a tick. But unscientifically speaking, if you’ve spent a good portion of time outdoors, you’ve probably had higher odds of getting bit by a Lyme infested tick than you do at striking it moderately rich in Vegas. Just speculating, of course.

The first symptom that may appear is a red, bull's eye rash. This rash is called an 'Erythema migrans' (EM) rash, and can be your ticket to a quick diagnosis, provided your doctor knows a thing or two about rashes! This is one of the few (or only) visible signs that you've been infected with Lyme Borreoliosis. If you see this, seek medical attention quickly. The sooner you are treated, the better!

Other symptoms may take days, weeks, months, or even years to manifest. As mentioned, most people don't even realize they've been bitten. Many people don't get the rash; many don't
have the slightest idea of the warfare occuring within their body.

Some people with strong immunity may never even know they are carrying the Lyme bacteria within their body. Some people will never experience the hell of Lyme disease. Those people are the lucky bastards.

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Lyme Disease is an EPIDEMIC
Lyme Disease is really an epidemic that hasn’t gotten its fair share of press. Sure, it’s had its “15 minutes of fame” – but because of the devastation that Lyme has brought to its victims & their families – it merits a little more coverage.

"If it weren't for AIDS," says Nick Harris, Ph.D., President of IgeneX, Inc., a research and testing laboratory in Palo Alto, California, "Lyme would be the number one infectious disease in the United States and Western Europe." www.alternativemedicine.com/AMHome

So if it ain’t #1, I guess that means Lyme disease is the SECOND leading epidemic in the United States and Europe – second only to AIDS! I didn’t know this – did you? And you don’t even have to have unprotected sex to get it! All you have to do is go outside – maybe do a little gardening, rake a few leaves, or maybe go camping with the family. Hell – you really don’t have to go outside if you’re not the outdoorsy-type. You can just let Rover or Kitty-Kitty inside after their roll in the grass & let ‘em jump in your lap.

In case you didn’t know, Lyme disease is generally transmitted via the feeding habits of the common “deer” tick, which may be a misnomer because deer don’t have to be involved at all. Deer ticks are commonly found on deer, as well as birds, mice, and yes, your sweet little pet.

Although the CDC (Centers for Disease Control) may disagree, all areas of the United States are at risk for Lyme disease. According to the CDC’s own website,

“In the United States, Lyme disease is mostly localized to states in the northeastern, mid-Atlantic, and upper north-central regions, and to several counties in northwestern California.”

The CDC’s website even has a pretty map of the United States & has the “endemic” areas highlighted for your viewing pleasure.

I understand they may hold this position because those areas may have more “officially” reported cases of Lyme disease – but the CDC has a stringent criteria for a Lyme diagnosis to be "official". I surmise this stringent criteria is in place because if they had to record all of the cases of Lyme that are diagnosed by clinical diagnosis only (based on symptomology & examination - without benefit of positive test results) – then it would be obvious that Lyme disease is THE SECOND LARGEST EPIDEMIC IN THE UNITED STATES and Europe.

I believe I understand why the American government would prefer not to have that as common knowledge, because it might just cause a few Americans to become hysterical about this epidemic. And I must admit, hysteria is over-rated. A couple of weeks after I was diagnosed, I went through a few days of being hysterical. I felt better having a good cry, but after it was over I was really exhausted and I still had Lyme disease.

The thing is, and this is an important realization: Ticks can’t read maps; they have no geographical boundaries. They’re just out for blood, and they’ll take it wherever they can get it. And if they get it off you, they may be injecting you with a nasty little bacteria called Borrelia burgdorferi– which is the main bacteria that is responsible for this little thing we’re calling Lyme disease.

Before jumping into the whole “Borrelia” topic, I would like to suggest for those of you who do venture outdoor from time to time: insect repellent. Remember, you don’t have to be a deer hunter to get bit by a deer tick. Deer ticks aren’t all that picky – just hungry. Deer ticks can be virtually any where, & they can be as small as the period at the end of this sentence. So - slather you & your kids up with a product that’s proven to repel ticks when going outside, and keep your pets protected from ticks as well – not just for their sake – but for yours too.

Before closing this section, I'd like to recommend that you view an excellent on-line brochure created by the Lyme Disease Foundation, a non-profit organization whose mission is to educate people about tick-borne disorders. Take a look - it's got some awesome pictures of ticks and rashes. I wouldn't necessarily frame the pictures...but you might want to send them along to interested family & friends.

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The Sporadic Rant
I went to see my OB/GYN today for my delightful “well-woman” exam. (Please note my sarcasm.)

{I will hereinafter refer to my OB/GYN as “Dr. G” – for gynecologist. I initially thought I’d call him “Dr. SOB” – but I probably need to save that for some other doctor that will no doubt be more deserving of the title.}

I first saw Dr. G a year ago, as he came highly recommended from a friend whom is battling cancer. I decided to see him because my health was on a steady decline…again. My friend has had much success with him and practically insisted that I go. So I did.

In addition to Dr. G’s gynecology practice, he has incorporated a holistic “well-woman” format that includes “de-toxing” the entire body; balancing hormones; diet; exercise; and HIS expensive vitamins & supplements that are most certainly superior to those found at most health food stores, yada, yada, yada.

I’ll probably tell more about my 9 month experience with Dr. G’s office at a later date (and no, I didn’t give birth to anything other than my inner lunatic during that time period..). For now, it is important to understand that I utilized & followed Dr. G’s holistic health plan – to the best of my ability – for a 9 month period and saw no considerable improvement. In fact, I gained 30 pounds and my hypothyroid problem started to spin out of control.

I eventually decided to see another doctor, who again, came highly recommended by another friend. This friend had some success with this new doctor because he was a specialist for Chronic Fatigue Syndrome (CFS) & Fibromyalgia.

For the past two months, I’ve been going to “Dr. C’s” office – (Dr. C - for CFS doc) because I feel like I have been experiencing CFS & Fibromyalgia for a long damned time – yet none of the umpteen doctors I’ve seen over the years have had the courage to write it down on paper & make it official.

It was Dr. C whom had the intelligence to run another Western Blot (WB) to test for Lyme disease. My primary doc (Dr. P) had run a WB a couple of years ago when I was having a multitude of painful, and mysterious symptoms. That WB came back negative.

However, this last WB came back positive for Lyme’s disease.

Dr. C said that, because I have such a long history of Lyme “symptoms”; and the mini-neurological exam he gave me indicated that my brain is being affected (damaged); and because I have this positive blood test for Lyme disease that….lo and behold, I have Lyme disease.

That seemed simple to understand. I became resonably depressed about the diagnosis, but it explained about 25 years or more of strange medical crap so at least I had learned something! All my symptomology matched the literature I read on Lyme disease; I had no reason not to question his diagnosis.

Fast forward to today – when I returned to Dr. G’s office for that above mentioned delightful girly exam. Dr. G asked me how I was doing. This seemed like a typical doctor’s request for info, so I made the mistake of actually telling him. I told him about the Lyme disease, my weight gain (which was obvious), my out-of-control thyroid, my low progesterone, the other viruses raging through my body, etc.

As I sat there wearing only socks and a paper gown, he flipped through my chart & quickly told me he didn’t believe that my thyroid test (the one he did NOT perform) could have been that “out of whack” and that he didn’t believe I had Lyme disease.

I was amazed that he could come to this conclusion – this anti-diagnosis - so quickly. A gynecologist & a medical psychic to boot! How lucky for me and my bare, naked ass to be in his presence!

He had the audacity to tell me that, despite all the Lyme literate medical doctors (LLMD’s) from around the country that depend on certain specialty labs as Lab “X”, that this lab I got my positive Lyme test from is basically “bogus”. He said that ALL of their tests for Lyme come back positive. In fact, he said, and I quote:

“I could send a sample of that wall paper there to Lab “X” and it would come back positive for Lyme.”

In addition, he told me that I just needed to “de-tox” and lose about 30 pounds and I’d start to feel better.

With regards to my weight, he asked what Dr. C thought about my "weight problem". I informed him that Dr. C felt my recent 30-pound weight gain could be attributed to my undertreated thyroid condition. To this, Dr. G replied that if everyone's weight gain could be attributed to thyroid problems, then he'd be rich, because he'd just sit back & prescribe thyroid medication to all the fat people. Granted - that wasn't a direct quote because at this point I was still taken aback from the previous stupid comment he made about wallpaper containing Lyme bacteria.

So in other words, I just needed to come back & spend all my medical dollars at his facility, take all of his "de-tox" supplements; see all of his "people"; lose that extra 30 pounds, and in 6 months I’d be good as new.

Perhaps he flipped too quickly through my chart that indicated during my previous 9-month experience with his clinic, that I DID jump through his “hoops” while gaining that extra 30 pounds that, according to him, is a main source of my problems! Perhaps he flipped too quickly through my chart to realize that I've been on thyroid medication for about 10 years now and that I actually have a thyroid auto-immune disorder as well called "Hashimoto's Thyroiditis"!

Meanwhile, I was amazed at how calm I remained. I was amazed at how much restraint I showed in the presence of this condescending man that just made some of the most ludicrous remarks I’ve ever heard from a doctor. In the past I might have started crying. In the past I might have called him an SOB or a horse’s ass to his face. But I didn’t.

As a matter of fact, while he was talking I was trying to figure out just WHY I was so calm. How uncharacteristic of me to sit quietly without saying much of anything during what was really a veiled “attack”. I understood that he was probably pissed because I’d been seeing Dr. C. So maybe it was all the recent psycho-therapy with “Dr. S” (Dr. S – for “Shrink”) that helped me keep from crying or screaming at that moment.

And then I thought about what I had read about progesterone & it’s calming effects. Knowing that I’m almost bathing in the maximum prescribed dosage daily, I thought about how thankful I was for this magical hormone that kept me from even having all the inner turmoil a person usually experiences when they want to tell an authority figure to kiss their ass. I didn’t really have that turmoil! It was wonderful!

I will admit, however, that just for a moment I thought it might be cool if I could conjure up some flatulence at just the right time. Sure, it would have embarrassed me, and the whole office would have gotten a good giggle at my expense…but my gas is rank and he certainly would have deserved it.

But again, I showed miraculous self-control.

Upon further reflection, however, I realize most of this restraint may be attributed to the fact that I was sitting there in that paper gown waiting for him to probe painful areas with a large, cold metal speculum. Hey, I may have some mild brain damage (caused by LYME disease!!!) …..but I ain’t a complete fool!

Sometimes – you just have to let other people’s BS hang in the air. Sometimes you have to hold in your own hot “air” no matter what end it wants to come out of; and sometimes a non-response is the best response of all. Sometimes.

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