About Me


I like to run on the beach and watch sunsets...

Just kidding...

I won't bore you with a long story, I will just put links to them in case you are interested. :)

I dont think i will get better then i am right now..but im defintly better then i used to be. I reached what I call my "baseline" symptoms. meaning I still have symptoms but I can at least function again. Im not homebound or housebound anymore like I used to be. 

I have done a combination of treatment, from antibiotics to herbs, to supplements and rife machines. Now I dont do any treatments other then juiciing daily. and that helps me maintime my baseline...and keeps me functional by giving me extra energy everyday.

 I got sick back around 1991. It started with anxiety attacks, heart symptoms, heartburn and new symptoms got tacked on every year. I went through fifteen years of drs looking at me like I was crazy and labeling me "panic attacks" until in 2005 I got diagnosed with Lyme Disease by a dr at my local HMO. I was so happy to have a diagnosis! After fifteen years and going to over 100 drs in three different states, I thought I was on my way to recovery. Little did  I know that was just a beginning to a whole other journey!

My Activism Timeline 

Also I want to explain quickly why I call my blog "The Perfect Storm."  I don't really think Lyme is just "Lyme." I believe it is a combination of factors, chem trails, pesticides, many bacteria, viruses, parasites and all the chemicals and toxins we are exposed to everyday.

I am curious to why some people don't get sick. Everyone is exposed to all this stuff daily and some people never get sick. Is the Lyme bacterium what triggers off a storm of these other infections/viruses to being set off by a lowered or overly taxed immune system? Maybe, I don't know. It doesn't seem like anyone else knows either.

Research. We need research.

I also believe we need to change. Change and get back to basic. In this day and age it won't happen on a global scale, but I think we each can individually do our piece, and  live our own lives as healthily as we can.

That may help symptoms, but on a bigger scale, not sure what is going to really cure this epidemic.



1991  Got sick



1991 - 2005

* Went to over 100 doctors in 3 different states. Diagnoses ran from panic disorder to hiatal hernia, to Fibromyalgia to Bulging Disks to Chronic Fatigue Syndrome with suspected MS, Lupus and so many more I could take up this whole page listing them.



2005

* Got diagnosed with Lyme Disease. Had a positive Elisa at 1.19 and had bands 41 & 58 positive on the IGG Western Blot and band 23 positive on the IGM western blot. Got prescribed 3 weeks of Doxy 100mg bid.


* After starting Doxy I started twitching. I started hallucinating at night. My family and roommate said I would yell and cry in my sleep all night long. I always felt tired. I stopped leaving my bedroom. I could not tolerate light or sound. I just laid in bed in the dark for days.

* Note: noone told me what a herxheimer reaction was. http://whatislyme.com/the-herxheimer-reaction/

* After not getting better this is when I started going through the dr referrals to all the specialists that did not believe in Lyme. Somewhere in this time I got pissed.

2006
*I started collecting research papers and sending them to all the local HMOS. I started with MercyCare and Aurora after their drs had treated me so condescendingly.

* Joined all the Lyme forums and started researching and reading everything I could about Lyme Disease and the other infections such as Bartonella and Babesia.

2007
* Gave up on mainstream doctors who all apparently do not believe in Chronic Lyme. Started seeking out alternative treatments. Experimented in rifing, salt c protocal and other supplements.

* Continued to try to send research papers to doctors and administrators of the HMOS.

* Made a myspace page for Lyme Disease Awareness. Posted daily news, research, updates and became an online support group.

2008

* Met some local Lymies and started a support group in the Kenosha area. 

* Ironically started a Facebook to get a "break" from my Lyme Support Group on Myspace. This quickly launched into a massive Lyme Disease Support Group where I began posting questions for other Lymies,  having "stupid questions night" (for distraction) and having "insomnia hour" for the Lymies who were suffering insomnia as I was now that my "chronic fatigue had turned to "chronic insomnia."


2010

* Joined Lyme Support Network Support Non Profit groups.

* Started the "Perfect Storm" Blog.

* Started "Lyme Events" with my friend Robin to try to keep track of lyme walks and rallies.


* Helped in the first Lyme Walk I had ever been involved in.



*Found out my dog has Lyme Disease while I was on my way to the Turn the Corner Lyme Gala. The first time I got to meet many of my online Lyme Friends.




 * Made the first "Faces of Lyme" video.


 * Realized I had too many Lyme friends to include them in one video so made part II Faces of Lyme, Never Lose Hope



 * After learning from my facebook support group how many people were feeling abandoned and treated crappy by their families, I made this for family members and friends of people with Lyme Disease.

2011

Started a Lyme site called Whatislyme.com
* Arranged a Lyme Walk in Milwaukee Wi.

* Started as a board member on WLN, (Wisconsin Lyme Network).
Main job being to run their website.

* Put together a Lyme Awareness Events Video for May Awareness


 * Made the "Signs" video.




* Attended the Mayday Lyme Disease Protest In Washington at the Whitehouse



* First got involved with helping Elizabeth Chalker


 Helped in second annual Lyme Support Network Lyme Walk

*  Helped Paul put together the Boston IDSA Protest.




2012

Wrote these Lyme Disease Articles
Lyme Friends Memorial
Understanding Lyme Tests
Lyme Activism Events
Mayday Lyme Disease Protest
What I Learned From My Illness
Lyme Disease Awareness Shop 
May Is Lyme Disease Awareness Month 
How To Remove A Tick 
The Witch Hunt For Lyme Doctors
A Love Story Based on Pain, Strength and Faith
The History of Lyme Disease
Do I have Lyme Disease
Lyme Disease Fundraisers 
Lyme Disease Treatments
The Lyme Disease Controversy
Dietrich Klinghardt, MD, Ph.D.
PJ Langhoff


Made the Lyme Disease Memorial to be played at Lyme Awareness Events





* Made this Lyme Awareness Video about Tick Safety



* Made the "Faces of Lyme, The Children" Part 3 Video



 * Continued to try to help Elizabeth Chalker



* Started a Fundraising Blog for those in need. Fundraiser Help

* Started Cards For Kids Campaign for kids were sick and needed a little cheering up and moral support. 

This was cancelled about six months later due to lack of response from anyone.

* Ran online auctions on facebook for Lymies in Need.

* Started the site "Invisible Illnesses" to try to link the different "Invisible Diseases." 



2013

US Rep for the Worldwide Lyme Disease Awareness Protest




June 2013

Hopefully retiring!

2014

Worldwide Lyme Protest

Co- Founded the first International Lyme Website  with Karen Smith from Australia
Worldwide Lyme Borrelisos Association 


Billboard I raised money for, for the Worldwide Lyme Protest

2 comments:

  1. Hi there, I'm Lindsey! I have a question and would love to speak with you. Please email me when you have a chance, thanks so much! Looking forward to hear you!

    ReplyDelete