REST IN PEACE FALLEN LYME WARRIOR.

Lyme Disease and Mental Health http://smoothshots.com/video/271963870

http://www.tiredoflyme.com/depersonalization-and-derealization-from-lyme-disease-and-its-coinfections.html

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4418265/

Bartonella – https://www.lymedisease.org/lyme-basics/co-infections/bartonella/

Babesia – https://www.lymedisease.org/lyme-basics/co-infections/babesia/

In the midst of the deserted land of lyme disease,  occasionally comes a voice (or in today’s age, written messages) from one who helps pull you back to center if even for a bit. To have a disease that is denied by the center for disease control and many doctors is already detrimental , add in the fact that it literally causes mood and cognitive disturbances and it now becomes dangerous. The “voice”  that helped anchor me back to reality often came after terror filled nights as I held myself shivering, suffocating, desperately trying to force Babesia off of me, opening my eyes to my friend Bartonella where the world can only be described as “indescribable”. Neuroborreliosis causes derealization. Bartonella a co-infection of lyme disease also causes psychiatric symptoms such as hallucinations and derealizations. I have both.

Feeling exactly the same. Can’t believe am in this mess. Sending love, support and blessings from the UK.  Steven

It is hard to scroll through his messages and rewrite them here, seems I am exploiting his vulnerability which he tried so hard to hide. If I am, I am sorry. I only want the world to know his story. I want the world to pay attention to his suffering and finally hear him. I want the world to know what a crime it was that he wanted so much to be well but those who  were supposed to help, betrayed his trust and degraded him instead. Doctors who he confided in literally “laughed” in his face when he informed them that the had tested positive for lyme disease from a private pay lab. (This method is taken by many who suffer for years due to inaccurate infectious disease testing by mainstream medicine).

On May 31, 2018 Steven Parkin, after a battle with chronic lyme disease (Neuroborreliosis, and an unnecessary battle with the NHS, who denies the existence of  this disease and access to appropriate care decided to end his life.  According to the NHS, like the CDC in the United States, “Post Sepsis Lyme Disease”, occurs in a few rare cases who have been diagnosed and treated. Excluded are those caught “in time” who still continue to suffer decades later after a short course of antibiotic treatment. Excluded are the hundreds of thousands of cases never diagnosed such as Steven which turns into brain infection.

When I say “decided to end his life”,  it implies he had responsibility.  Upon entering the land of neurological lyme (neuroborelliosis),  one quickly learns that the word responsibility is what others use as a structure to a world that is set up in an orderly fashion, where things make sense. When you get sick with this,  a different reality is  presented to you on high-definition tv , full screen , with 3D glasses. There’s no way to just rewind and hope you can see the beginning again and find the plot twist where maybe this time it will change. There’s no covering your eyes at the intensely horrifying parts so you never have to remember that vision again. There’s no fast forwarding to the end to not have to see it or feel it , or only  going to your favorite part to watch over and over hoping it remains this way. There is only climbing through the events , hanging on for dear life at every turning point , analyzing the characters actions for what they are not what the author intended, sliding down the falling action to a resolution , an acceptance of how it actually ended , not how you wanted it to end. And maybe waiting for the day there is a sequel where everything you couldn’t grasp is explained and happily ever after is a reality.

It’s the lyme. I was never like this before. Never. Can’t even be arsed anymore to figure it out.  I spent a week in a private villa in Greece . Own pool. Hot sunshine. Every day I woke I didn’t even want to be alive. I put a happy mask on every day for a year but it slips. Sometimes, I just want to take it off.  Sorry for the DM I just don’t want everybody in the group to know . I am ashamed as I don’t want people to know. I have no friends now. Let them down so many times.  This isn’t normal depression am sure our serotonin receptors are damaged.   I look for a cure on forums but all I hear is “my leg aches today etc:, like I said you are the nearest I can relate to symptoms wise. 

I answered him with gratitude for trusting me as I felt the same, he had seen my posts on our online support group. I noticed he always liked my posts but never commented.  I answered him with suggestions of supplements to take, and right now as I reread and rewrite his words, I am ashamed that I didn’t answer him with “Come to New York, there are a few doctors that will believe you here.”

Much of my time this past year while toppling over into the rabbit hole of lyme and co infections had been spent indoors, in my bed, struggling to survive. Much of my time was spent staring at my apartment walls questioning my reality, my sanity, “are these doctors right?” , “have I been crazy”, “Is this disease real”, “Am I faking it”, “Am I here?” , “”Does the world look like a movie to everyone?”, “Are they conspiring against me?” , “Have I lost my mind?”  His messages kept me grounded and made me feel I existed to someone. I know for a while I did the same for him. Yet, as I reread, he was where I had been for decades and I cannot help but wonder why I did not do more

Light/sound , depersonalization sadness. I google suicide constantly , please don’t judge me. Steven

Judge? I have suffered the same, Still do at times as I told him.  I hoped it would comfort him.  Somehow, though I missed that he was not as far in the process of differentiating between  the infection and reality as I was. I had been misdiagnosed for decades and knew the torment he spoke of, Lyme and co infections burrowing holes into my brain manifesting psychiatric symptoms  was one I knew well.

I see no doctor as lyme is denied in the UK. Private doctors can only follow nice guidelines. My NHS test WB (western blot) is negative, so nobody will touch me.  (  The western blot test , a standard among infectious disease doctors has been reported to be inaccurate in at least 50% of the cases. )

We continued talking and I offered to send him lactulose through the mail. Lactulose which cost me $5.00 , could reduce the ammonia in his body which is shed by the spirochetes . I suspected this was causing some of his symptoms as it had mine.  I hoped it could at least get him started.  I was told by USPS, this was not allowed and it would be confiscated, and I would get fined. I informed Steven and he said not to worry as he was going to start bio resonance therapy , a new alternative approach to healing.

We continued to talk, I from my bed and he after bike riding  at times through a world in derealization, a world he watched as a movie and struggled to hang onto.  On May 28,  had to enter into the emergency room due to allergic reactions caused by complications from the infections. I hadn’t heard from Steven for a few days and in lyme time a few days means lost time in confusion and fight to stay sane.

I am sleepy now zzzz Thanks again for the chat.   This was the last message from him on my phone.

When I was released May 29 my body began to recuperate, and a few days later my heart drowned as I saw his daughters announcement that he ended his life. I reached out to the groups.

Please I just failed one friend, please don’t go , they cannot win, stay with us, stay here with us. 

I cried.  I beat myself up thinking of what I could have, should have done. I kept waiting for him to message me to tell me about his bike ride or how his treatment was going. I contacted his daughter , wishing to apologize.

A few mornings after I looked at my phone and in my lyme stupor ( brain fog and confusion from the neurological lyme),  there he was writing me :

Hi Maria, are you my dad’s friend? X Did you live in America? If so, he has spoken about you to me. I’m glad I found you. He spoke very highly of you. 

Except it wasn’t him, it was his daughter. My heart rose a bit . He trusted me and spoke of me. I comforted him. I had helped him. I hung onto this thought and I would do everything I could to make it known that Steven Parkin was destroyed by the NHS in England.  Steven Parkin was destroyed by a disease that is not understood, denied, not researched enough.  Steven Parkin had to hide his symptoms and suffering so others wouldn’t just institutionalize him and treat him with the respect he deserved. Steven Parkin was a husband, a father, a son , a human being who had the right to be heard.  Steven Parkin was a gentle, sweet soul looking for someone to relate to and I am honored that h found it in me , if even for a little.

This is his first email to me.

Dr. Robert Bransfield lyme literate  New Jersey-based psychiatrist  estimates that as many as 1,200 of the 44,000  suicides in 2015 — as well as more than 14,000 incidents of self-harm and 31,000 suicide attempts — may be attributed to Lyme and associated diseases each year.   Just how many more have to die before this disease is taken seriously and acknowledged to be real?

My CD57 is 29. You should be between 100-350. You will find all lyme patients have low cd 57, low immune function. They will not accept lyme as an immune suppressant.  Low cd 57 indicates low immune system. They cannot be that stupid. I am in a bad place at the minute. Hallucinating body spasms. Intrusive thoughts. This is terrible. Can’t stop my body from shaking. depersonalization. I can’t connect. I am scared of my own body and brain, It will be a miracle If I could see the world and people as I did before . 

I hope you can see it now Steven. I hope you are able to see it again. I’m sorry . Please forgive me. I love you. Thank you.

ho’oponopono

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