Thursday, September 8, 2011

How to Tell a Nine Year Story...

As I've already mentioned, one of the main goals of this blog is to raise awareness of just how devastatingly life-altering and downright bizarre this disease can become if not treated in its early stages. 

I've recently set up a new page entitled "My Story" where I intend to relay my personal experience with this disease. Due to the length of the story, this must be done in - I fear that putting it all up at once may be quite overwhelming...there's just so much to ingest!

There are, however, many benefits for telling a story in parts - particularly if you're blogging about it. One of those benefits is to add addendum's in the posts following each segment of the story I'm telling. 

In fact, I think it's a perfect setup!! You see, I want readers to look at my story and be able to relate to it - I want to humanize it in a way that makes it understandable to both Lyme sufferers and non-suffers alike. BUT, I also want to be able to provide an area where the phenomena of a story like this can be described in medical terms, and the posts I intend to create after each segment will do just that.

For example: If you've seen the "prologue" to my story, you already know that it was extremely unfortunate that the doctor I saw when I first contracted this illness, mistakenly took my symptoms as a virus and NOT Lyme Disease. Of course you'll say - but your test for Lyme came back negative the first time...well, it's now a known fact that testing for Lyme is often unreliable, and when you initially contract the infection, it may take several weeks before a Western Blot test comes back positive. Oh...but how precious those several weeks could have been in stopping the progression of the disease!

I remember having a conversation with a cousin of mine in late 2008 and was surprised to hear that, after experiencing the same symptoms I had initially presented with, the doctor he went to see immediately put him on anti-biotics BEFORE taking any tests - just IN CASE it was Lyme.

 Things have come along way since 1998, and you can't imagine how much pain and suffering could have been spared, had my doctor had the foresight to do just that...

When it comes to this disease, "Stages" are critical in determining the ultimate prognosis. For those of you who don't know what I'm referring to here is a rough outline of the progression of this illness in its stages. There are SO many variations of this outline...please forgive me if I miss a symptom or two...

Note: The later the stage you catch it at, the worse the prognosis becomes. Also, you will find that the presentation of Late Stage lyme disease is SO unbelievably different than its earlier manifestations, that it will literally look like an altogether different disease...

Stage One: Early, Localized (the disease hasn't spread to other  areas of the body yet.) *This stage is often mistaken as a flu or virus and will most often resolve itself. This is NOT a good WILL develop the second stage if not treated at this time. Most common symptoms include:

  • A Bulls-Eye Rash at location of tick bite. **Less than 40% of people develop any rash at all...if you are lucky enough to find either the tick, the rash (or both), do the following: Take a picture of the rash, CAREFULLY remove the tick with tweezers (make sure to pull gently and steadily in the opposite direction of where the head is pointing towards - You need to get the entire tick is VERY important NOT to leave the head embedded in the skin) , save it and bring it with you to the Dr.'s office. 
  • Flu-like symptoms: lethargy, headache, stiff neck, fever, chills, muscle and joint pain, swollen lymph nodes.
If you catch it at this point and are given 2-4 weeks of doxycycline (I would go with four...but make sure you take pro-biotics with it!), your prognosis should be great. This is probably the only time I will agree with Western Medicine and say that the 2-4 weeks of anti-biotics will CURE you!

Stage Two: Disseminated Infection (you didn't catch it at the first stage or receive treatment, and now the disease has spread throughout your body.) Presenting 1-4 months after initial infection. Most common symptoms may include:

  • Bulls Eye Rashes throughout entire body
  • Vomiting, Nausea
  • Enlarged Spleen
  • Severe, recurring headaches
  • Pain, weakness, or numbness in arms and legs
  • Dizziness
  • Insomnia
  • Extreme Fatigue/Lethargy
  • Beginning of CNS involvement, early neurological and psychological manifestations may appear (Ex. Anxiety, peripheral neuralgia, OCD, extreme irritability, mood swings etc)
  • Photosensitivity/Photophobia (When "daylight" becomes your worst enemy : )
  • Muscle Aches
  • Night Sweats
  • Hellish Nightmares (seriously...)
  • Migrating Joint Pain
  • Rib/Chest Soreness
  • Joint Swelling
  • Heart Issues may develop (Ex. Palpitations)
  • Bell's Palsy (Paralysis on either side of face, muscles on affected side will become flaccid and droop)
  • Poor memory and reduced concentration
  • Conjunctivitis (Pink Eye)
Western Medicine continues to imply that even at this stage, 2-4 weeks of doxycycline will cure you. I do not agree...and - that's pretty much all I have to say about the matter. I do, however, believe that even at this point, chances for a complete recovery are highly possible with the APPROPRIATE treatment.

Stage Three: Late, Persistent, Chronic Infection (The infection is basically EVERYWHERE at this point. Even with the most aggressive IV therapies and anti-biotic treatments, patients will often relapse once therapy is discontinued. The symptoms of this stage vary greatly from person to person - every "body" is different, each having their own genetic pre-dispositional weaknesses, and this, in turn will reflect in what areas of that particular body - whether it be musculoskeletal, neurological or psychiatrical will be affected the most. Some of the most severe symptoms may include:
  • Seizures (Non-Epileptic)
  • Dementia
  • Psychosis
  • Suicidal/Homocidal Ideation
  • Damage to Nerves, Joints and Brain
  • Encephalitis, Meningitis
  • Sensory Overload
  • Misproprioception 
  • Impaired Speech
  • Lyme induced ALS
  • Convulsions
  • Paralysis
  • Tremors
  • Stroke
  • Heart Attack
Um...I think you get the idea (Bad! Bad! Bad!). Successful treatment at this stage is basically not very optimistic, and most people require ongoing therapy to be able to function even at minimum capacity. 

There is hope however, it will be literally the fight of your life, but if you put in the time, have the right resources and support (both financially and emotionally), find the treatment that works for YOU, and stick with it through "Hell or High Water" day, you might just find yourself feeling better, one day, you might just win.


Ummm - Yeah...That's about right. ; ) Love this Cartoon!!!


Anonymous said...

So sad, but very informative. I also had a lyme test come back negative in 1998 after I passed out in the shower and at school. They ended up doing another test a few weeks later and it was indeed positive. It's very upsetting when a doctor misses something they should have picked up on....-Niki McGuire

Domenica said...

Love the cartoon--so very appropriate which makes it so very sad!!! Domenica

Sarah Lamando said...

At this point, the only thing left for me to do is laugh when I look at this cartoon... : )

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