Let Your Voice be Heard on CNN

Please click on these articles and be heard.

1. Lyme Disease and Suicide, an Ignored Problem~ An article that talks about the issues we as Lyme patients or family members of Lyme patients, have to cope with when we watch our friends or family members commit suicide. Click Here to Leave Your Comment

2. Mayday 2013, Lyme Disease Rally in Washington DC~ CNN actually noticed this story. Now as we are planning on Mayday 2014 we should start asking them to pay attention again. Click Here to Leave Your Comment

3. Worldwide Lyme Disease Protest~ This article was written last year in regards to the WWLDAP. Now that planning is taking place again, let's all get their attention and leave as many comments as possible either telling them how the protests affected them last year, or how they expect them to change things this year. Click Here to Leave Your Comments.

Aimee's Fundraiser

My friend Aimee is having a fundraiser. I would like to help her by posting it here. She does so much for others and is one of the sweetest people I have ever met. She made these ornaments to help raise money for herself. A portion of the funds will be donated to Lyme Awareness events this May, 2104 and the rest will be to help her get to them.

Please help Aimee either by donating to her fundraiser.

Or by purchasing one of her ornaments.

Please stop by her blog too!

A bad day...

I woke up today sick. Really sick. What I call a "below baseline" day. Everything in my body and mind hurts or feels weird. 

My legs and hands are vibrating. Feels like electricity is running through them, some kind of internal vibration. My head feels swollen or inflamed from the inside out. Like my brain is too big for my skull. I got up to go to the bathroom and had to lay back down again quickly, so dizzy and weak.

Does this ever end? Over 20 years of this shit, and counting.

I got so much to do, so much.

Mentally, having a hard time too. The ups and downs of this disease just suck. You get your hopes up, having some good days or thinking some treatment or protocol is working then bam, you are down again. Fuck this. I hate Lyme.

Again, my mind goes to so much to do. I have over 100 messages to read between g mail, yahoo and Facebook. All people looking for answers. I don't know what to tell them anymore. I want to give them hope but I don't want to give them false hope.

Does anything work? People swear by "A, B & C" but I see the same people here on facebook that I used to talk to 8 years ago on Myspace. Noone is going anywhere, we are all still here trying to figure this out. Only a handful seem to have broken free from the Lyme world.

Should I answer questions anymore? Do I make people lose hope when I tell them my opinions? Or is the truth necessary to move forward to get some answers? Is my truth different from other people's truths though? Maybe I should just retire and be done with the Lyme politics. Should I do Mayday and the Worldwide? What am I fighting for anymore? I think we need more research and that's what we should be fighting for. But sometimes I feel alone in that. When I post about that, everyone argues with me. So why do I put 24/7 into something I stand alone on? I guess because my heart tells me to. And I follow my heart above all else because I believe that is where God put's "His Voice," in our hearts. That little voice that tells us to do this or that, just because we should.

Part of me just wants to retire and let others take over now. But I feel responsibility because I know I have all of you at my fingertips.. I know I can help, I can organize. Everyone is too sick and suffering and it's gotta stop. Kids have this...that little voice in my heart tells me to keep going.  But something is missing. We're like a bunch of rats running around a maze with no clue what we are fighting for. How do we get us all to unite. Or maybe all the different battles and goals are necessary to reach the big one. Recognition of this damn disease?

Yep bad day.

Discussion between myself and Wallace Kingston, please join us!

I posted this post in response to a question my friend, Wallace Kingston asked me on my Facebook Page. He asked me what I think about parasites being the "end all" in lyme treatment...this is what I said.

"I'm scared to post my real feelings here on facebook.. I really don't believe we have the answers yet. Every couple months there is some "new thing" that is going to cure us..and it never does. XMRV, KPU, CCSVI, MTHFR, and on and on. People aren't getting well enough on abx and several of my friends died while on treatment. So for me, I think we need to stop fighting for long term abx and fight for research, start from the ground up. But I don't know who will do that. It seems people are either idsa slanted or ilads slanted..I don't think either has the answers yet. If they did, we wouldn't all be here on my page anymore. We'd be out living life. I see too many people say they are better, when I think we just get used to it, or our bodies just start repairing by themselves, not necessarily cuz of the treatment we are on. Too many times I see people say they are in remission and then a year later they are back here, sick again.

I mean lyme waxes and wanes, thats what it does. I have good and bad periods and I haven't done treatment in years, other then juicing.

Which brings me to my next point. I watch people cycle through abx, herbs, supplement, rife and all the goodies. But what ends up happening is when they get off all the meds, and start eating healthy,which I know is totally hard to do, they start becoming functional again..like me. I am still sick..don't get me wrong..but since i started juicing..i am functional.

But then again, it seems like each person responds to something different, so who am I to say. Some people swear by abx, some by herbs, some by rife, some by ozone... this is so damn complicated that I don't know how anyone can ever figure it out. 

Sometimes I think it's a "spiritual" disease. Like the universe is trying to tell us to quit spraying chem trails, stop putting pesticides in our foods, stop using poison everywhere, in our food, in the air, stop vaccinating ourselves with all kinds of crap..what am I missing? lol...it's like our body is being hit at every angle with something not good for us. Maybe it's time to get back to basics..and then we will all be healthy again. 

Aren't you glad you asked me now?"

I decided to post this on here because it got such a big response on Facebook. Some people agreeing, some not, some saying nothing is helping them and maybe even making them worse, and some saying that one treatment or other cured them. The diversity in answers just goes to prove my point further..We are all different, we are all responding to more then just "Lyme." If we all had the same exact issues we would respond to the same treatment. But we are all suffering from "poisoned bodies." Between chem trails, air pollution, vaccinations that we have gotten, the foods we eat, the bacterias, virsuses, parasites each of us has been exposed to, maybe Lyme being what lowered our immune system making it hard to fight all of the above, I'd say we are all guinea pigs right now. I would say that none of us know the "for sure" way to get rid of Lyme or whatever it is we are suffering from. 

Please add your opinions below. Don't feel bad to agree or disagree, these are just my personal opinions from my own personal experience. We would love to continue this discussion and hear everyone's opinions.

Worldwide "We are the Millions" Lyme Photo Album

Charlotte Therese Björnström Sweden started an international campaign to show the world how many people have Lyme Disease. If you have Lyme Disease and would like to add your picture, please 

CLICK HERE  and add your picture. 

One picture each please!

1. Click this link

https://plus.google.com/b/105349051292472647667/events/caatl2qmjnfhc4887l8h7lb5hcg

2. Click on “Attending.”

3. Then on the right, click on “view all photos.”
4. Click “Add Photo” on the top right.
5. Upload your picture then in the comment section under your picture, add your story, what country you’re from or a link to your story if it’s on a blog.

This is International, we want faces from all over the world! Make sure to put your country on there!

Here’s a diagram in case you have trouble finding the “Add Photo” button.

Projects Im Working on for 2013

This blog is kinda like my "filing compartment" for the events I'm working on. It's my "To Do List" per se. So don't mind this post. But it's where I am going to keep the projects I'm working on listed and updated so I don't forget or people can stop by to see what is going on new in the activism world. (Just the things I'm involved with, there are tons of things besides this little list.)

1. Keeping up websites Some revamping of whatislyme.com,  Eating My Way to Better Health, Wisconsin Lyme Network, The Traveling Lyme Flags, Fundraiser Help, Faces of Invisible Illness, Gluten Free 4 U

2. Planning of Mayday/Worldwide Protest for 2014.
    Specifically get start putting together groups for each state to travel to Mayday 2014.

3. Red Shoe Project (details forthcoming)

4. Launching International Website with Australian's Lyme Activist Karen Smith

5. Moving Lots going on in my personal life also. I just found out I'm going to be a grandma. So we are moving to be closer to my daughter. This is bittersweet as I am so happy to be with my daughter through this, but will miss my other kids, my mom and brother and my best friend Nancy here in Lake Geneva.

6. Facebook Support Page We will also be splitting up the time between where my family lives and where Paul's lives. So I will do my best to keep up with my Facebook support group, but please have a little patience with me and don't get upset if I can't post questions or respond to private messages every single day. I do get up more then 50 messages a day and sometimes it's hard to keep up. But I want everyone to get the help and support they need so I created this private group called, "Lyme Questions" where you can post questions and only the people in the group will see them. Please join then you don't have to wait for me to post your question. Also it is private, so you family and friends won't see your question unlike on my page. ! https://www.facebook.com/groups/121919717946352/

7. The Traveling Lyme Flags I will continue to take care of the flags and get them to where they need to go. If interested please check out info here. http://thetravelinglymeflags.blogspot.com/

8. Lyme Aid Project with Michael Rudy to help assist Lymies in need.

9. Worldwide Lyme Picture Album on Google + Working with Charlotte.Bjornstrom from Sweden on this project. Please add your picture on here if you haven't already! We would like to get thousands if not millions of people's pictures on here to show the world how many people have Lyme Disease. https://plus.google.com/b/105349051292472647667/photos/albums/caatl2qmjnfhc4887l8h7lb5hcg

Understanding Brain Fog

Trying to explain to family and friends what it is like to experience brain fog can be quite challenging. Many times we are told we have "mental problems" or we are getting "alzheimers" or that we are just plain "crazy."

Trying to live while sick and experiencing this debilitating symptom is hard enough, but to be under constant judgement of this and other symptoms just adds insult to injury.

Brain fog can be explained in a number of ways, it can be a little different for each person. Here is a couple different ways I have experience it, or heard other friends of mine with chronic illness explain it.

1. It's hard to think. Literally like there is a fog in your head. You just feel blank. You feel like you could just  sit and stare at the walls and do nothing. Any kind of task seems overwhelming. Everything is confusing, Adding 2+2 becomes a task. You can't remember basic things like tying your shoe.

2. Feels like you are between wake/dream state. Nothing seems reality. It feels like you are drifting between conscious and  unconscious. I have described it as I feel like I'm in a coma, or about to be. I can hear what's going on around me but feel detached from it all.

3. Feels like you are in a tunnel. Everything seems so far away. Vision doesn't seem right, sound seems far away, everything is a blur. Like #2 you feel detached, like you are in a tunnel and everyone else is at the other end.

Feel free to add more of what your experiences in the comments below. 

"Lyme Disease and Brain Fog"

by Dr Marian Rissenberg- Neuropychologist

http://rissenberg.com/lyme-disease/

"Lyme Disease and Cognitive Impairments"

by Robert Bransfield, M.D.

www.mentalhealth

"Brain Fog"

From the Blog, "Lyme Lit"

http://lymelit.blogspot.com/2013/04/brain-fog-chronic-lyme.html

"Distinct pattern of cognitive impairment noted in study of Lyme patients"

by Marian Rissenberg, Ph.D. & Susan Chambers, M.D.

http://www.angelfire.com/biz/romarkaraoke/Lymetim1.html

If you have any blog post or know or other good articles on "brain fog" please post them in the comments below. Thank you! 

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Just My Personal Opinion about Where Things are Heading in the Lyme World

I got diagnosed back in 2005 with Lyme Disease. Since then activism has been very slow moving, and by that I don't mean the activists or the countless events they are doing. I mean the acknowledgement by anyone outside of the Lyme community to Lyme and other tick borne diseases being a serious issue.  But I have to say, this year, in 2013, I'm seeing some changes. They might seem small, but I'm  happy at any baby steps I see. Here are some of the things I am talking about. 

* I see news articles coming out about different co infections such as Powassan Virus, Borrelia miyamotoi, Heartland Virus are spreading through the states.
Powassan Virus- http://newyork.cbslocal.com/2013/08/19/officials-warn-of-dangers-of-tick-borne-powassan-virus/
Miyamotoi- http://www.bostonglobe.com/metro/2013/07/01/doctors-urged-test-for-more-than-lyme-disease-after-tick-bite/443PKjvxln3rR0OHr5PTuL/story.html
Heartland Virus- http://news.yahoo.com/heartland-virus-carried-ticks-113130904.html

* I see different researchers starting to admit that other hosts may be responsible for the spread of tick borne diseases, such as lone stars now passing Lyme,
Big Discovery- Lone Ticks also Pass Lyme http://news.wjct.org/post/unf-researchers-make-big-discovery-about-lyme-disease.

* I see them admitting that tick borne diseases can be passed in the blood supply.
CDC research article- http://wwwnc.cdc.gov/eid/article/15/5/08-1562_article.htm

9 Year Old Boy Gets Erlichiosis through Blood Transfusion-
http://www.huffingtonpost.com/2013/04/03/ehrlichiosis-blood-transfusion-tick-infection-9-year-old-boy_n_3009093.html

This is due to all of you Lyme warriors out there. Those of you who are still sick but keep on fighting, and those family members and friends that are out there fighting for us. Fighting to spread the TRUTH on what we are going through. Let's keep the momentum going, letters, petitions, rallies, protests, green ribbons, lyme flags.....it's all making a difference!

See more news at:
CDC Press Release stating cases are 300,000, NOT 30,000
http://whatislyme.com/press-release-from-cdc-again-admits-that-cases-are-300000-10-x-higher-then-cases-actually-reported-to-cdc/
Write to PBS to play "Under our Skin"
http://whatislyme.com/call-to-action-contact-pbs-to-play-under-our-skin/
3rd Annual IDSA Protest
http://whatislyme.com/3rd-annual-protest-of-the-idsa-lyme-disease-guidelines-october-2013/
Worldwide Lyme Protest and Mayday Combining Forces for 2013
http://whatislyme.com/worldwide-lyme-protest-2013-combined-with-mayday/

Why does the CDC use the IDSA guildelines? Looking for your answers and opinions.

How come IDSA is still trusted after these reveals (see below)?

Why does the CDC use the IDSA guideilnes?

Why does the rest of the world follow the IDSA guildeines?

Click on Charlotte Therese Björnström Blog and leave a comment with your opinion or anything you know about this subject?
http://borreliablogg.wordpress.com/2013/07/19/idsa-vs-ilads-why-there-is-a-chronic-lyme-conflict/

Call to Action Fellow Lymies

LYME DISEASE MASS PROTEST! WE NEED YOUR HELP!

Tell the CDC and IDSA what you think about their guidelines for Lyme Disease on their Facebook pages!! Tell them that change needs to happen in diagnosing and treating Lyme Disease. Tell them how you have suffered! PLEASE SHARE!

Centers for Disease Control & Prevention

https://www.facebook.com/CDC

Infectious Disease Society of America

https://www.facebook.com/IDSociety?ref=ts&fref=ts 

Thank you for being active in Lyme Awareness!

My Personal Experience at Mayday 2013

Angele and me

Please Click Here to Tell your story to CNN!

Throughout the last couple months, I was not sure I was even going to be able to make it to the third Mayday. It seemed like it would almost be impossible. I had no money and was going through a real flare of

My old buddies, Chris and Tracy

Paul and me

This experience was one of the most amazing experiences I have had thus far. Seeing old friends that once could barely even get on the computer to talk to anyone, now were marching two miles around theWhite House. I always think that there is no hope for now. I always think I'll just be like this forever. What I realized on this trip is time does change things, time does heal things. You might not ever be 100% again. But  just hang in because you will get

I'm not sure if it's that we just start to naturally heal, as most of us are on different treatements, or if we are just so strong in spirit that we learn to cope and live with this disease, probably a little of both, but seeing these friends out there doing Lyme events, traveling, and all the rest of the "activities" we were doing was really really amazing and inspiring. I have heard this sentiment from others as well.since the Mayday Rally.

Please just never give up. It may seem impossible right now, but you will get through this. I am already looking forward to seeing everyone again. I really hope each person who didn't get to go, gets to go next year. It's really an experience you will never forget to hang out with people who "understand."

Tracy, Blake, Cody, Chris, Paul, Angele, Amy, Matt, Erin, Josh, Allison, Kat, Bambi, Dave and so many more, I have known you all for a long time and love you all. Thanks for making my birthday so special. <3

better. You will be more functional. I remember not being able to sit upright, not being able to get up to cook or go to the bathroom on my own. Now I was with my Lyme friends, hiking two miles around the White House.

nasty fatigue and random pain. But thanks to some good friends of mine, things started to work out. I had a room to share, a ride to take me and things just kinda fell in place. Thank God...

Aimee, Amy, me and Gary

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Girls just want to have fun. :) Angele and Amy being silly. 

The Lyme Memorial

Everyone watching the speaker at Mayday 2013.

Got to meet my friend Erin Senger (also the Virginia Worldwide State Coordinator) 

Jennifer taking pictures.

Susan Green and Monty Skall speaking at Mayday 2013

Melissa Ann, the planner of the Mayday Rally 2013

Annette holding her sign.

Tracy (http://www.lymefriends.org) & Nancy from Lyme411 (http://w.mawebcenters.com/lyme411/)

Matt & Paul, Mayday 2013

Katina Makrisspeaking at Mayday 2013

Sharon Rainey givers her presentation at Mayday 2013.

Chris, Angele, and me.

Bambi giving her speech.

Jackie from Wisconsin facing the cars with her signs.

Aww sweet moment between Jackie and Thomas.

Everybody together.

Paul giving direction to the crowds.

Chris & Paul

Tracy & Joni having a moment.

Paul's liscense plates.

Dave Mack speaking at Mayday 2013

Tracy Cutler livestreaming. 

Joe, (Superman) and Allison, the Mayday Planner

Lynn giving her speech at Mayday 2013.

Ahmad, Owner of Clongen Labs
http://www.clongen.com/

A surprise birthday present from all my wonderful Lyme friends. Thank you Paul Mall and Angele Rick for all your work. :)

And home to more surprises on my birthday from my daughter.

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