How I feel now.... Learn how Chronic Lyme REALLY affects me, I am just another case of a disease that has no cure...

 I am a face for this disease that is so unknown.

 Yes I have late stage neurological Lyme. 

Yes everyday is a battle. 

Yes I get angry.  

Yes it hurts.  

Yes I grieve. 

Yes I feel left behind. 

Yes it's a prison. 

Yes I can't just escape. 

Yes it's scary. Yes it feels that it may never end.

 I say I feel "stuck" every day of my life.... I am not getting better, I am getting worse.  What I have to do is be patient and trust my doctor... but in the mean time I am getting sick with infections upon infections and its breaking me down, its breaking my spirit down.

 

What do you do when all hope is lost?

 I do not want sympathy nor do I want help,  Getting sympathy just makes me feel worse and when asked for help I just get frustrated.  To be honest no one can help me right now.  Only my dr. and he is even struggling with figuring out the right treatment for me.

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I came across a lady's blog recently and it hit me to the core.

 (click here) Lyme Disease-Why are some cases worse? 

            WHEN she talks about her misdiagnosis's and how she                 struggles.  She does not know why she is so sick and she has no answers in sight... 

        ALL I can feel is as if she is telling my life struggle for the 
                                         past 10+ years.

She ALSO gives a great straight forward explanation of what the Lyme Bacteria (LB) does to our bodies and how it can affect each person differently...
" Lyme has obviously spread throughout your body. Into your deep tissues, joints, into your brain, your organs, your heart…. everything. I think a big factor is how much LB has penetrated the blood -brain barrier. There are so many neurological symptoms that can cause an abundance of symptoms such as cognitive disorder, MS-like symptoms, encephalitis, among many other issues that seem to cause a patient to be far worse off than someone that does not.

We all also have such a wide range of symptoms! It is amazing how many symptoms there can be having Lyme disease. There are people have flu-like symptoms that will just not go away, people with only joint pain or muscle pain and no other symptoms, then you have the people that have seizures, have difficulty walking or cannot walk at all, those that are extremely fatigued, people with behavioral changes, and much more. So many diseases mimic Lyme too. There are so many different symptoms in all of this disease that range from mild, moderate, to severe. Although us Lymie’s are brought together because we are the same in a lot of ways, we are completely different. I have not heard of one person that was the exact same as me."                    
                 
                 WHAT REALLY HITS HOME IS WHEN       
                      SHE SPEAKS ABOUT STRESS!

"Stress. It’ll get you. How much stress in your life will play a factor in how you are doing, symptom wise. It can very much make you worse. If someone upsets me or something stresses me out, not only does my IBS kick in full-gear, my legs turn to complete Jell-O and I pretty much can’t do anything. Tremendous stress for me at least, usually sends me into full panic attack mode and I wind up having a seizure of sorts."

She helps put into words what happens to me when the slightest stressful encounter happens.  "Legs turn to Jell-O".  My heart also starts to pound so fast and hard, like it about to push through my ribs.  My throat starts to throb and I lose all control, mind and body and just want to scream from despair..

 All that's left is constant tears...

 

The truth is THERE IS NO CURE....

"There is no set blueprint for remission......

....people that have had Lyme for years upon years, will have a higher spirochete load to kill, so treatment length and severity of symptoms come into play.
Some people might be sick for much longer, have worse symptoms, and be “stuck” and not getting better because of their treatment protocol. It might not be aggressive enough for what they need, or are not utilizing some sort of a combination therapy to attack Lyme in all its forms...

... Some people might get completely depressed or have so much negative energy that mentally, they just can’t get to a level that they need in order to get better, to be able to fight and continue on with the healing process and are stuck where they are at."

So I know this blog post WAS a bit of a rant, it might even seem a bit aggressive, but it's just one example of how this disease is affecting me. Again.... this is also meant to be cathartic.

Although is releases some horrible emotions I'm feeling...

But JUST like her, I want no one to emote how sorry they feel for me.

 I WANT PEOPLE TO LEARN FROM ME!

Don't spend your time trying to fix me, if you really care than take the time to become educated on the real facts of this disease and how it effects my body.  It effects everyone differently, I am just one example, but regardless....

PLEASE NOTE: That this post's main purpose is to wake people up, OPEN YOUR EYES 

...and really see what this very intelligent bacteria is doing to our bodies.  They will not stop destroying every part of our body till we are dead.

I must think positive and believe that I will get better.  That's all I can do....

 

 I am a SUFFERER and an ADVOCATE.

 blessing and hope for all...