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Facts on Lyme’s Disease

March 6, 2010

I had a really informative session with my infectious disease specialist yesterday and I wanted to write everything down before I forgot it all. If you know of someone who has suffered from Lyme’s, please pass this blog post on to them because I learned some things that I have so far not read anywhere else.

1) Lyme’s is a bacteria, which is common knowledge, but it is unique in that this bacteria cannot be cultured easily.  In comparison the Strep bacteria when taken from a throat culture will grow overnight in a petri dish quite easily. Lyme’s will not thrive outside of the host, which makes developing a cure incredibly challenging.

2) I found out in my research, when I was first diagnosed, that there was an approved vaccine used a while back that was pulled from the shelves.  Interestingly enough, there is a Lyme’s vaccine for dogs used right now, but not one for humans.  The doctor clarified yesterday for me some info on the human vaccine, which was pulled from production when 1 to 2% of the recipients reported Lyme-like symptoms. An important distinction here needs to be made– the vaccine never contained the live bacteria.  These symptom sufferers, when tested, did not test positive for Lyme’s antibodies and did not have the bacteria in their body ever.

3) The Lyme’s tests are very confusing.  The tests actually confirm whether or not your immune system has sent out antibodies to battle the bacteria – not on whether or not you have the bacteria present.  No subsequent blood test helps determine if the bacteria is still in your body.  The only way the doctors know the bacteria is present is to prescribe antibiotics when the symptoms occur and if the symptoms go away then the bacteria is present and alive within you.  The drugs will not work if you have Lyme’s-like symptoms, like the people who received the vaccine, or the unfortunate ones who are labeled with “Chronic Lyme’s”.

4) What did those vaccine recipients get if it wasn’t Lyme’s and what is Chronic Lyme’s?  The risk inherent in any vaccine, that does not use a live bacteria, is not that the person will contract the disease, which is impossible, it is that their immune system will over-react to the vaccine.  In what was an attempt to encourage a body into developing antibodies against a future attack from the bacteria has in essence triggered an adverse response in your auto-immune system and caused it to go over board and attack your body. Which is why I will never be allowed to get another flu shot or TB booster for the rest of my life (not because of Lyme’s, but because my immune system is already “off” with Celiac’s and EE)

Chronic Lyme’s is actually not Lyme’s disease anymore.  It has morphed into a condition that involves the patient’s immune system – and the improperly named “Chronic Lyme’s” confuses the sufferer into thinking more antibiotics will help rectify the problem, when it will not.

5) If a patient gets better on the antibiotics they do not have the above described auto immune response going on, they truly have the bacteria still in their body and they could be battling it for a while.  Constant antibiotics is not the answer, though.  A body needs a break to ensure no damage is done to internal organs and no new horrible possibly permanent conditions develop because of the over-use of antibiotics.

There are lots of opinions on what is the best treatment and your doctor may tell you different info from what I have outlined above.  There is so much conflicting information and so much still to learn, my best advice is to not let one doctor be the sole deciding factor in your treatment.  Learn as much as you can and be your own best advocate.

6) What happens if you have an auto-immune disease already and then get Lyme’s?  That’s the boat I’m in right now.  My latest IV treatment has proven successful in that I no longer am suffering the physical attributes of Lyme’s, which are usually the first ones to show up.  The neurological symptoms that show up later are also the last to leave, so it will be months before I’m back to my old self mentally and even then, there are some people that are permanently damaged mentally and will never be 100% again.

I could unfortunately fall into the category of no longer having the live bacteria in my blood, but into the one that has my immune system fight a triggered over-reactive response to the invader that was in my body.  Only time will tell and I’m optimistic that this last treatment will be the trick.  I plan to start fresh on Monday with exercise and getting back on track with my health and my life.

No matter the outcome if you are a Lyme’s victim that is cured in a treatment or two or struggle with it for years – please know you are never alone.  There are support groups you can find online with a simple search and no matter what, you cannot let this disease beat you.  The power of your own mind and strength of a positive attitude can never be discounted.

To survive and to thrive is a simple decision.  One you must make and never doubt the outcome.  The hand of life you are dealt may not be the one you would choose, but no matter what cards you are holding, the decision on how to play them is always yours.

Wishing any of you out there that suffer from this the best of luck.  You may have a long road ahead of you, but you can do it!  Don’t ever give up.


One Comment leave one →
  1. March 7, 2010 1:21 pm

    This is great information for everyone, C.J.! With all you've had to go through health wise, I'm so happy and excited that your writing career is launching so quickly.

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