Different Kinds of Shaking/Tremors with Lyme

I am not a medical professional or anything like that. The only reason I am doing this post is so that others with Lyme or other related diseases realize they are not alone. Whenever I mention I get these weird symptoms on Facebook I am flooded with emails saying things like, "wow I thought I was alone in these weird feelings, I was scared to even tell my doctor!" So on that note, here is some things that I feel that I believe are related to lyme or the inflammation caused by whatever the heck we all have, be it lyme or some other neurological issue.

1. Outward shaky~ This one is self explanatory. It's when you hold your hand out and can visibly see yourself shaking.

2. Internal shaking~ This is when I feel the sense that I'm shaking, but I can't visibly see it.

3. Internal Tremor~ This is more like a buzzing feeling. I feel like there is an electric current running through me. It can be through my whole body, just in my head or in any extremity. I wake up in the morning with this really bad sometimes. Also experience this after any physical exertion. If I try to exercise, I get this so extremely bad that I cannot walk or function. Showering also causes this. I also experience this after eating sometimes.

4. Quaking~ I totally made up this word to describe what my head feels like sometimes. It is usually when I wake up I have what feels like, well the only way I can think of explaining it is like plates in the earth shifting. I know that sounds crazy. But it's like something is rubbing against themselves and shifting back and forth in my head. This is also accompanied by a sound, a deep low pitched noise that I first think is something on the outside. Like at first I always think it's coming from in back of me, like a truck backing up sort of...but then I realize it's in my head and noone else can hear it. Within seconds of hearing it, I feel the "quaking" feeling.

All of the tremors are usually associated with extreme neck pain and stiffness and head pressure, ear pressure, jaw pressure and swollen eyes.

I also get a feeling sometimes like I am out of my body. I feel like I'm way above myself and it is accompanied  by a dream like state. I feel like nothing is reality, or like I'm in a tunnel watching everything from far away.

One more strange sensation that I feel is like I'm about to leave my body. It's a feeling like my whole soul is vibrating and trying to escape this sick body. When I get this I really feel like I have one foot in the physical world, and one in the spirit world. Like it's that time to go Home. Again, I know it sounds crazy but this is just my experience of what I feel and I wanted to share it with others so they may not feel so alone or scared if they experience it themselves and they are too scared to talk about it.

If you experience anything like this or something different you want to try to explain please feel free to leave it in the comments below.

Add a Message for Deepak!

Our dear friend Jenny Rush has a very inspiring blog, Lyme Thriving. In case you haven't seen it yet, you must check it out!  Jenny is one of the people I know who actually got much better. She didn't just do one treatment or the other, she used an approach from the physical and spiritual side. Please check out her blog to read her story and tips on healing.

For right now, Jenny is putting forth an action to get Deepak Chopra involved in our Lyme plight. Deepak has tweeted a post from Jenny's Lyme blog so we are hoping he will be open to help us. We know he is a busy man but wow, what a great person to have on our side, right? So we all have to do our part in reaching out to him.

Jenny has started a post for him on her blog where we can all leave comments for him to read. Please stop by and leave your comment. Let him know what you have gone through. Make sure to keep it a reasonable length though. When things get to lengthy people tend to skin instead of read the whole post.

To Leave A Comment for Deepak Click Here

On This Fourth of July

May you not have sound sensitivity so you can enjoy the fireworks without wearing earplugs!

May you not have light senstivity, so you don't have to wear sunglasses!

May you find a good natural bug repellent so you don't get more bugbites!

May you feel good enough to leave your home and get to watch the fireworks outside among other humans!

May your dogs not crumble in fear!

 For those who didn't get to go out, click here to watch!

NYC Fireworks 

Walt Disney Fireworks

London Fireworks 

Great Tick Info For Kids

This website has a lot of good info for kids about Lyme Disease and ticks. There are bookmarks, coloring books and all kinds of fun stuff to get their attention. Please check out "Timothy the Tick."

Click Here 

In case you didn't catch the 20/20 segment on Lyme Disease, here is a small segment:

What was good about the show: 


It brings about awareness about Lyme Disease. It also educates people on how Lyme symtpoms are always different in each person. One person may have sore joints, while the next has memory issues. There are no one set of symptoms for tick borne diseases. I was also glad to see co infections brought up.

What I'd like to see changed for future shows, is that first of all, stop asking people if they are faking it. You would never ask a cancer patient that! Elaina did a good job defending herself, but why shoudl she have to? 

Secondly, why is Lyme always lumped in with such things as eating rocks? This is a serious disease. It can be fatal. Why not put it on a show all of it's own, or among cancer or HIV shows?

My personal feelings on the Dr Phil show

When Dr Phil first started talking about Lyme Disease, I almost lost it. I almost went into a panic attack or some kind of shock. Just hearing the words "Lyme Disease" being spoken for the first time on a popular mainstream tv show seemed surreal. In the several years that we Lymies have been fighting to be heard and taken seriously, it was the FIRST time I ever felt like someone who could make a difference was doing something about it. And it was Dr Phil.

I really want to show my appreciation for Dr. Chitra Bhakta, Stephanie, Kathy and Brooke for going on the show and speaking up on the behalf of Lymies everywhere. Brooke could easily choose to keep it quiet as to not hurt her career, even though I know she has never done that, and on the contrary. Dr Bhakta could of not chosen to be on the show out of fear of repercussions that we all know. My own drs have had their license taken away as I write this. Stephanie no doubt, knew that people would question her and call her seizures fake and that she is just addicted to drugs. All these women and Kathy are sooo brave to come forward and we truly appeciate it. We all know it wasn't easy at all for any of you to do under the stigma of Lyme Disease, not to mention that you all probably felt really sick!

So, thank you!

If you missed Dr Phil today!

Click on this link to watch the episode and the behind the scenes and uncensored scenes! http://whatislyme.com/for-those-who-missed-the-dr-phil-show-plus-the-behind-the-scenes-uncensored/

Lymie Dating and Friendship Site

My friend made this site to help people with chronic illnesses meet. Whether you're looking for friendship or more join in, and make a profile. You can select which disease you have and meet others in the same boat. It's a great way to get support. http://survivorfriends.com/

Take The Pinkie Swear

Lyme Disease is such a devastating disease. It is so easy to become isolated and desperate with the never ending symptoms that Lyme Disease causes. Not to mention the abandonment of friends and family, and the rejection of the medical community. If you are feeling this way please reach out. There are lots of groups that can help. It can be hard to reach out, or even embarrassing. But those are NOTHING compared to the loss that your family and friends will feel if they lose you. So please reach out to others. Other Lymies will understand. I’ts okay to feel lonely, depressed, angry, or alone. These are real feelings just as happiness, joy, and all those are. But remember this is an infection in your brain making you feel this way. It may be just temporary. Try to hold on. You never know what is around the  corner.

There was a young boy named Shea. Shea had Lyme disease and was very sick.  The day before he went to heaven he asked his mom to “double pinkie swear” that she wouldn’t ever take her own life if something happened to him.  It was hard, Roxi lived through some terrible losses, first her son, then her mom. But she kept her promise and today is on lyme treatment herself and enjoying a life with her grandkids. Had she done something different, she wouldn’t be here enjoying her life and her two grandkids, making memories. So to honor little Shea’s wishes, I would like to ask everyone who reads this to “double pinkie swear” that you will never make the decision to take your own life. Please close your eyes and picture yourself pinkie swearing with little Shea. Then go to the bottom of this page and sign your name in the comments section. This is your contract with Shea that you will always reach out to others when you need help and you will never do anything to hurt yourself.                                                                       To read more about Shea Click Here

How Long Does It Take For a Tick To Transmit Lyme?

My friend Doreena and I were brainstorming today and we have a couple points and questions that we would like to get feedback on.

1. Is there studies showing that it takes 24 to 72 hours for a tick to transmit Borrelia into you? I know that they say it takes that long for the tick to regurgitate it's stomach contents into you (where the Borrelia lives) but has anyone done studies to see if the bacteria is also in the numbing fluids that ticks inject into you with their barbs while the second they bite you?

2. And what about co-infections? Is there any studies showing that it takes 24 to 72 hours for ticks to inject co infections such as Babesia, Bartonella, or Elichiosis into you?

3. And why do drs say the tick hasn't been on you long enough, when almost noone knows when the tick attached since it numbs you and you don't even feel the bite. Most people don't even see the tick at all.

4. Is the bull's eye rash 100% diagnostistic of Lyme? I thought I read in either the CDC or the IDSA's guildelines that it is but can't remember where I saw it. Any help would be appreciated with any of these.

Click Here to Learn More About The Tick Anatomy

Having Hope With This Disease

Cucumber, broccoli, cilantro, parsley juice

Normally I am pretty realistic when it comes to "curing lyme." I don't really believe that there is a cure. Yet. But I do believe that there are things that we can do to help ourselves feel better. I believe we can make the environment of our bodies difficult for Lyme and all other bacteria, viruses, and parasites to live in.


Also I know that each of us reacts to different treatments differently. What doesn't work for one might work for another. So I don't promote any specific treatments usually. But I did want to write a bit about what I'm doing because I actually had four days this week that were great. Not just "functional" or "above baseline," but really really great. Like I could walk without fainting, and I gardened, and did things like give my dog a bath, and walked paths out in the woods without collapsing. This is rare for me. Really rare. Usually I am mostly homebound. I usually feel like I will never get better. I did have one scary day when I had horrible symptoms, the neck and head pain with the heart beat in my ear. So like I said, I still want to be realistic. But I will appreciate any good days that come along.

I don't do antibiotics anymore. The only changes I have made in the last couple months was that I started juicing and started doing powdered supplements.

Juicing~ The juicing I started because I see how many people seem to be getting better with diet changes. Gluten free, cutting out sugar, grains, and trying to eat organic food that also will help alkalize your body. These things seem to be the one common thread in the people who I have seen get better. So I started juicing to try to get more vitamins and minerals out of the food I eat. I am not perfect, the other night I made a frozen pizza. But I will say since I started juicing, I notice the biggest difference in the morning. I still wake up horribly sick. But after I drink the juice it gives me energy. It does NOT take away my lyme symptoms. But it gives me the energy I need to start moving on with my day and get things done that I need to do.

The other thing I do is I have added a powdered supplement into my juice. ( I am NOT trying to sell anything so I am not saying the name, if you want it just email me and I'll give it to you.) The reason I chose to go with a powdered supplement is because I have really extreme reactions to meds and to supplements. No matter how much people say this will not cause a bad reaction, in me, it will. So when I heard you could get it in powdered form I was happy because I can control how much I take, to make sure I don't have a reaction. I love things that come in drops too like the Byron White products. I just can't take full doses of things like other people can. The powder has a multitude of vitamins and herbs in them. I actually take two kinds, one is for vit and minerals and energy the other is for fiber. I just add it to my juice each morning and it really does help me with energy.

So that's it for now. Just wanted to update. I have a tendency to be really negative about Lyme, so when something good happens, I know I should blog about that too. We all need hope. 


So that my two cents for the day. :)


~Lisa

May is Around The Corner!

Don't forget May is Lyme Disease Awareness Month! Time to start planning and getting ready. It will be here before you know it. There are so many things you can do to help spread awareness. 

Here are some ideas:

• Tie lime green ribbons around trees and mailboxes.
• Send Educational brochures to schools.
• Attend Protests/Rallies
• Plan A Lyme Walk.
• Wear Lyme Awareness Items, shirts, pins, anything lime green.
• Arrange an Under Our Skin Showing
  
  
  
  For more help please go to  
• Lyme Awareness Events Help

Arianne,s Blog~ A list of what helps with Chronic Fatigue Syndrome

Arianne is a friend I met online. We are both battling Lyme Disease, only she is now in remission. She has been doing really good for a year. She has a blog and just did a post about how she is staying well. She does a raw food diet and cycles through herbs and supplements. Please check her blog out. She made a list on there of what she takes and what helps her. When seeking out how to get better, we must follow the examples of the ones who are better.

http://baringfruit.wordpress.com/2012/02/07/what-gets-me-going-how-i-handle-and-have-mostly-beat-chronic-fatigue/#comment-9

Lymepedia

Check out Lymepedia for definitions, treatments options, and lots of other answers for you Lyme and Tick-Borne Infection Questions! 
Click Here