Mommalyme Hope

Great video

2012-02-13T08:38:00.001-06:00

Lyme In The News

2012-02-03T09:30:00.001-06:00

http://www.edp24.co.uk/news/health/reydon_woman_s_petition_bid_to_put_lyme_disease_in_spotlight_1_1194389

Eye symptoms

2012-01-28T13:21:00.003-06:00

Lately I've been experiencing some scary eye symptoms. The first time it happened, I was driving down the highway. All of a sudden, in my lower left part of my vision, I started seeing a 'flashing' pattern. But this was an unusual pattern, almost like a propeller of a plane. Or like I was looking into a fan, spinning around. It was a rapid movement, from a dull color to normal and back. If you imagine turning a fan on high, and sitting very close to the blades, that is what it looked like.

It started mild, but quickly starting moving towards the middle of my vision. I didn't know whether I was having some sort of stroke, seizure, or what. I was about to pull over because I didn't want to loose my vision and wreck, but it started to recede. Honestly, if kind of felt like something alive was in my eye, swimming around, and it gave me the eeby-geebies!

It didn't happen again for months, but it's back. I usually see it first thing in the morning. It's not as scary as the first time, because it usually doesn't go to the middle of my vision. It's usually always my right eye, and stays in the bottom left part of my vision.

Needless to say, I am a bit worried as this is NOT normal. I know people suffering from lyme disease are used to ABNORMAL things happening with their bodies from lyme, but this seems different than anything I've experienced. And I think it's getting worse.

Lots of people with Lyme have eye symptoms. Some have gone blind, some wear sunglasses 24/7 due to sensitivity to light. Others have flashes, floaters, and lots of other things going on with their vision. It not something to take lightly.

So, I made an appt with an eye doc. Luckily, through my support group, I found a doctor that did her dissertation on "Lyme Disease and the eyes". So, my guess is that she is well versed in what lyme can do to the eyes and will help me determine if the disease is attacking parts of my eyes. We Lymies do know that the spirochetes love 'soft tissue' that the immune system and antibiotics can't get to...and those places include the brain and the eyes. yuck!

Until then, I deal with constant headaches (not migraines), eye pain, and the occasional 'flashing' in my eyes. My appt is in next month. Wish me luck.

Another Lyme Angel

2012-01-23T23:20:00.003-06:00

http://www.legacy.com/obituaries/nhregister/obituary.aspx?n=elizabeth-a-white&pid=155536727

Betsey White, we will miss you friend. Thank you for being who you were and for the fight against this horrible disease. You helped others who were suffering so much and you will never be forgotten. We pray for your family.

Is Lyme Disease Sexually Transmitted?

2012-01-11T12:24:00.001-06:00

Read this article: HERE.

Babesiosis

2012-01-07T21:04:00.002-06:00

This is the 'other' infection I had. Hopefully I don't have it anymore but it can be very very hard to get rid of. I've been off treatment for Babesiosis for a year and haven't relapsed.

Most common symptoms are:

Night Sweats

Air Hunger (asthma type episodes)

Headaches

Remember, this can be passed on congenitally also. Although mainstream docs will tell you it cannot. But we all know better, don't we!

TOUCHED BY LYME: Her son’s “nightmare of illness” led her to path of helping others heal from Lyme

2012-01-07T20:54:00.001-06:00

http://www.lymedisease.org/news/touchedbylyme/corson.html

Video

2012-01-05T16:09:00.001-06:00

My Lyme Friend Dawn shared this on her blog, and I also had to share. I hope you watch!

Lyme Angel

2012-01-03T11:38:00.001-06:00

We have lost another to this horrid disease. I send prayers to her family.

http://www.tickedoffandfedup.org/JeannetteEichelberger.html

Happy Holidays!

2011-12-25T06:54:00.002-06:00

I just want to wish everyone a wonderful Christmas and Happy New Year!

And Happy Birthday Jesus!

Great Holiday Discount!

2011-12-05T10:23:00.005-06:00

Visit www.underourskin.com and see the latest December Special going on!

HOME USE DVD

December 2-for-1 Sale!

During this holiday month of December, for every DVD purchased, you'll get the same number free! Buy one, get two. Buy two, get four...and so on! Share your free copies with loved ones, or help educate physicians and politicians. This new television version is updated and re-edited. Comes with over an hour of bonus footage, including interviews with the filmmakers and subjects, trailers, character updates, and deleted scenes. Also contains director's commentary, Spanish, French and German subtitles, closed-captioning, and an updated 32-page informational booklet. And look for extended interviews with bestselling author Amy Tan and Lyme discoverer Dr. Willy Burgdorfer, plus a cameo by U2s The Edge.

$29.95

(Consumer DVDs are intended for private, home viewing only. They do not include public performance rights for viewing in community groups, libraries, universities, or other institutional settings. For these purchases, please visit our online education store.)

I can see the stars!

2011-12-05T10:18:00.002-06:00

One annoying symptom I've had for a while now, is vertigo. Although I've had it for close to 10 years, it comes and go and sometimes disappears for extended amounts of time. But this year has been hard, cause I haven't been able to look up, or lie on my back, or left side.

So, only sleeping on my right side gets very tiresome, and hard. It hurts my back, my neck, my ear....you name it.

But since I started my new treatment (amoxy and azith) it has slowly disappeared. The other day, my daughter pointed to an airplane, and I was able to look up at it without getting extremely dizzy! And just last night, I took the dogs out for a minute, and I was able to look at the stars!

I know to a healthy person, these are small milestones, but to me, they are the world!

So, I celebrate being able to see the stars!

Reflecting on how far I've come

2011-11-28T16:18:00.004-06:00

Not many people will understand the torture and pain that I've experienced. Most people don't know what it's like to feel totally normal one day and wake up the next day, not being able to control your body. Most people do not know the pain of having your insides torn up and down. Most people do not know what it's like to have your brain swell, or your nerves attacked, or your vision and hearing altered, or to not sleep for months on end.

Most people will never know the devastation that lyme disease does on the body. And for that I'm glad. I really am. But for those of us who live it and have lived it, it is a type of torture that cannot be put into words.

I often have Post Traumatic stress from that first year I was sick. Flashbacks of the pain, the agony, the misery that I went through. Often times, it hits me when I try to sleep. I have to ask my husband to talk to me and distract me, other wise it really starts messing with my mind.

Here is a reminder of where I was:

October 2nd, 2009:

My eyes shoot open as I try to make sense of the screaming. As I search the room for light, I see on the clock it's still around 2 am, and I've only been asleep a few minutes. My body is so stiff and my mouth will not move. What is that screaming? Soon, part of my chest seems to be opening, being torn open by a knife. Slowly it moves down my chest, down my stomach and I realize it is me who is screaming. But no one hears me. I'm screaming in my head. And my mouth still will not move. It's like I'm waking up during open heart surgery, without any anesthesia. The pain is so unbearable yet I am trapped in my own body. Suddenly, the air gets sucked out of me. I try to breath, but it's impossible. It's like trying to breath through a coffee straw. Similar to an asthma attack, my lungs gasp for air. I really feel like this is the end.

I slowly turn my head to the right. I know people are in the next room, and I could try to scream for help. But it's like someone taped my mouth shut. It will not move. I use all the energy I have to grab my bottle of sleep medication. Do I just take the whole thing? I cannot live like this. This is more than the human body can take. I am broken. My body and spirit have been attacked day after day, week after week, and Satan has officially won. I cannot fight anymore.

But I chicken out, and take just 2 pills and swallow, hoping maybe I'll go to sleep and end this pain. I sit there, suffering in silence, as the battle in my body rages on. The burning, the tearing, the swelling. For hours I lie there, and I pray that God just takes me as I drift off once again. And just as I feel like I might fall asleep, my body jerks with extreme force, causing my body to snap like an electrocution. It does this repeatedly, from my feet to my head, every time my brain tries to sleep. Until the last time, it ends with a seizure.

Everything goes white, and I wake up to what feels like someone hit me with a baseball bat. Now my head aches as I try to recover from whatever just happened. I've never had a seizure before. It is the most terrifying thing I have ever experienced. It took me three days to recover from it. I walked around looking like a dead person.

I wish God would just take me. Who can live like this? Why would your family and friends selfishly want you to live like this? Many people sympathize with Cancer patients and what they endure. But lyme patients, no....they are just 'giving up' or 'making it up'.

There were many nights....I would have traded having lyme disease with having cancer in a heartbeat. I would have even rather had terminal cancer than lyme. At least people understood. At least you got respect, compassion, and a proper goodbye. At least there was a end to the misery. Please God, just take me. I demand you to take me.

"The Beast comes back,

to nibble on it's feast. Yet,

It does not kill,

but just inflicts pain and agony on it's prey.

Night after night, day after day,

It instills fear and misery on it's meal.

Until the prey gives up, and the fighting ends.

And the ending prayer is for it to be done."

Back to today: I hope I don't offend anyone with Cancer or anyone who knows someone with Cancer. I never want to minimize the suffering of a cancer patient. I know some people with cancer do not get respect, or compassion, or a proper goodbye. But these thoughts above were exactly what I was feeling during my treatment. It was the worst thing I have ever experienced, beyond what I could ever expect someone to actually live through. But I did.

One reason I share this, is to not only remember how far I've come, but to hopefully give HOPE to people who might be where I was. It can get better, and hopefully will. I know I will never be cured, and I do not know how long God will keep me on this earth, but I do know that you CAN get better. Today, I live between functioning at 80% to 100%. I am a mom, a wife and a friend again. And it's good to be alive.

Happy Belated Thanksgiving everyone. I send my love to all my lyme peeps.

Lyme in the News

2011-11-16T19:50:00.003-06:00

Warrior: Josie Gaffney stays hopeful in the face of Lyme disease, arthritis

Published: Wednesday, November 16, 2011, 8:00 AM

By JANICE GENGER, The Patriot-News Follow

In 2008, Josie Gaffney of Upper Allen Twp. was a gymnast, a cheerleader, a soccer player and a ballerina. But everything changed that April when she was bitten by a deer tick.

Today, Josie, 14, is in a wheelchair and deals daily with the effects ofLyme disease. Shortly after her diagnosis, Josie also began showing signs of arthritis. Within five months, most of her joints from the neck down were affected by juvenile rheumatory arthritis.

"I was sad and worried because I wasn't sure what was gonna happen," Josie said. "I was afraid how it would affect my life, but my friends and family helped me through it."

Josie attends water therapy three times a week and said she does the best she can to get stretched out, which is where her gymnastics background comes in handy. "Before we could do anything we had to stretch in gymnastics and so I know when I'm trying to stretch if I'm pushing too hard. ... I know when to stop."

No matter how long it takes, Josie's goal is to rid herself of the wheelchair and walk again.

"Sometimes it feels like I won't be able to walk again. It's painful. But I know something is going to come out of it and that everything happens for a reason," she said.

Josie's mom, Lisa Gaffney, said they've always kept everything positive. She said it's hard to say whether the Lyme disease caused the arthritis. "Some say it did, some say it didn't. All we can do is treat both without making one more severe than the other."

But through all the treatments and pain, Gaffney has been impressed with Josie's attitude, "My daughter has taught me to find my inner strength. And peace and patience, which she shows to everyone."

Eventually, Josie hopes to put her experience to use helping other children with similar problems. Gaffney said Josie is already working hard to bring awareness to Lyme disease.

"You don't give up because something doesn't happen. Something good will come out of it sooner or later," she said.

Happy Halloween!

2011-10-31T21:12:00.004-05:00

Wishing everyone a wonderful Halloween!

I've had terrible vertigo for about 2 months now. Most of the time, it's at night when I try to lie down. But sometimes I get it during the day also. And I can't look up, whatsoever!

So, it's like being stuck in a haunted house!!! UGH!

So, here is hoping that November brings some relief to this dizzy world I'm in!

Update on me!

2011-10-26T08:05:00.000-05:00

I have an appt on Dec. 1st with my Lyme Doc in DC. I figured I would go out there one more time before trying to switch.

I have an old friend I stay with who had a baby last spring and I really want to meet the little guy. :) This friend was my best friend in jr. high and some of high school. Then she moved away and we've kept touch through the years.

I'm actually seeing my doc's PA. She is very good, and thorough. AND cheaper!

I'm guessing this will be my last trip, but I've been saying that for a year now...hee hee.

I'm off all meds, but willl start back pretty soon. I allow my body a 'break' to help my immune system recover from all the antibiotics, and to fight yeast issues. But, it's time to get back on and hit this infection hard!

Love you guys! Keep fighting the fight!
mommalyme.

Looking for you!

2011-10-11T08:54:00.001-05:00

I'm still waiting for "Crafting for Lyme" to send me your address so I can send you your winning prizes from my giveaway the other week! Please email me at brandimc@live.com

thank you!

Update on me!

2011-10-08T01:22:00.005-05:00

Well, I've been off treatment for about a month. Not because my doctor told me to take a break, but because "I JUST DON'T WANT TO".

I just don't want to take my pills. I'm so tired of being sick and taking pills. It's so hard to remember to take them. When to take them, what to take them with. It's so hard going through treatment. It's so hard thinking about lyme and my health every second of the day. I just want a break every once in awhile.

This break has been great. I still have memory and fatigue problems, but other than that, I'm on a short remission. I did have nerve pain the other night in my leg, which is ALWAYS the first sign of a relapse for me....but I ignored it and went on about my day.

I know I am probably giving the little buggers time to grow and multiply, but my mind and my body needed to breather. So, that's what I'm doing....breathing.

I have some big decisions coming up regarding my lyme doctor. Flying to DC is becoming challenging and hard on me. So, I have two other options. A doc in Colorado or one in Missouri. The one in Colorado seems promising, but she will be more expensive. The Missouri one is ok too, and I've been to him once before. Both would be a big driving distance, but cheaper than flying to DC.

I'll just have to think about it. I wish I was cured and I didn't have to think about this stuff, but doesn't every lymie. :)

Love you guys,

mommalyme

I just hate bugs.

2011-10-02T15:25:00.003-05:00

Some of you know we moved into a house not that long ago. Although I love the house, the bad news is, it's infested with poisonous spiders. We really didn't know how bad it was until we put sticky traps out, and I've found (probably) around 50 already. And most of those were in our daughters bedroom.

So, you can understand my concern, or better yet, fear of living here. We are slowly trying to seal up holes and cracks, clear out boxes, and keep stuff off the floor. I have done extensive research on these little fellows (Brown Recluse Spiders) and there just isn't much to do. Spray does not kill them, and they eat dead or alive bugs. They can live one year without feeding, and can lay 300 eggs a year. The female only has to mate once, and hides in her web to protect her offspring.

I'm about as freaked out as I can get. Just last night, I was getting up from going to the bathroom, and one fell off me. I pretty much almost had a heart attack. No matter how much I keep our house clean, they are still getting in. And it only seems to be a matter of time before one of us, or all of us, is bit.

I'm pretty down about it all, and feel defeated. If ticks weren't enough to worry about, now it's spiders that make your skin fall off when they bite you and could possible kill you. Great. just great.

Please say a prayer that I can feel some peace soon and feel safe in our own house.

thank you,

mommalyme

Friday's Winner!

2011-09-24T13:34:00.003-05:00

Congrats to Megan for winning a free blog design!

Whoo hoo!

Just be thinking of your 'blog name' and I'l email you on Monday.

Thank you everyone who played!

Hope I was able to spread a little sunshine in this lymie world. :)

Friday's Giveaway! ~last one.

2011-09-22T21:54:00.004-05:00

Well, since I'm doing a Garage Sale in the morning, I thought I would post Friday's Giveaway tonight. (It's thursday)

Friday's Giveaway is a BLOG!

I will create a blog for you!

Have you every wanted to have a blog of your own but have no idea how to set it up? Do you want to show off your kids, or record your lyme journey?

Well, today is your lucky day!

I can set it up for you, complete with decoration and anything you want on it.

It will be through blogger.com so your address will be www.(yourblog).blogspot.com (which is TOTALLY FREE)

Or, you can pay $10.00 to blogger to get rid of the ~blogspot~ in the name, like I did. My old address was www.mommalyme.blogspot.com, but I pay an annual fee of 10 dollars for just www.mommalyme.com

Either way, I will create it for you for free! And teach you how to use it!

Good luck!

How to enter:

leave a comment and tell me where you live (what state?)

It's that easy!

Winner chosen at 9pm Friday night.

Now, hurry and get blogging soon. You'll love it!

Thursday's Winner!

2011-09-22T21:52:00.001-05:00

Congrats to Megan for Winning Thursday's giveaway!

Thursday Giveaway!

2011-09-22T11:49:00.003-05:00

Today's giveaway has to do with Pic Lines. I realize this item will not be a *hot* item, but I know several lyme patients with Pic Lines, and these waterproof coverings are great for showers and baths.

So, if you or someone you know might need this, please comment!

The first person to leave a comment wins! (U.S. Residents only please)

Wednesday winner!

2011-09-22T11:48:00.002-05:00

Congrats to Mike for winning the Wendy's gift card! YAY Mike!

Send me your address and I'll mail it this weekend!

Wednesday's Giveaway!

2011-09-21T08:31:00.003-05:00

For those of you who love Wendy's, you'll want to enter today!'

Giving away a $5.00 giftcard to Wendy's!

(This is something I got free for trying their sweet potato fries!)

So, I thought I would brighten someone's day with a free meal!

How to enter:

Leave a comment telling me what your favorite fast food restaurant is!

That's it! Easy Peesy!

Good luck!

Everyone welcome to enter, and winner chosen at 9pm tonight by random drawing! Be sure to enter each day, you might win more than once!

Tuesday's Winner!

2011-09-21T08:26:00.003-05:00

Congrats to 'Crafting for Lyme' for winning Tuesday's Giveaway (and the midnight surprise)!

(must be your lucky week!!!)

Hope you like the Bed Bath and Beyond gift!

Send me an email with your name and address and I'll send you your prize!

brandimc@live.com

How to leave a comment

2011-09-20T13:59:00.003-05:00

Below each post will be a highlighted 'comments' word. It will have a number next to it listing how many comments each post has.

Example - "1 Comment"

Click on it, and then write your comment. Be sure and add your name so I know who you are.

If you have a google account, you can sign with it. But if not, then just click below your comment and it will say "Comment as" with a list. Pick anonymous and that's it!

Good luck!

Tuesday's Giveaway!

2011-09-20T08:57:00.011-05:00

**Winner will be chosen at 9pm tonight and posted tomorrow! So, hurry to enter!**

Today's giveaway is for you ladies!

Or, if you are a male, you can give it to a friend/family member as a gift!

Makeup bag and small bottle of Mango lotion from Bath and Body Works!

Both are brand new and I smelled the lotion, yummy!

Here's how to enter!

1. Share this givaway on your Facebook wall

2. Become a follower if you haven't already

THEN

Tell me in the comments what is your favorite Bath and Body works product.

(US residents only please)

GOOD LUCK!

To leave a comment, click on the comment button below. If you do not have a google account, you can pick 'anonymous' and just add your name within your comment.

Winner for Monday!

2011-09-20T08:52:00.005-05:00

Congrats to Megan

for winning Monday's Giveaway, the Neti Pot!

Just email me your address and I'll mail your prize this week!

brandimc@live.com

Midnight Surprise!

2011-09-19T23:34:00.003-05:00

** Congrats to 'Crafting for Lyme' for winning the midnight giveaway! ***

It's almost midnight! Time for some fun for you night owls!

I'm giving away the 1st and 2nd Harry Potter Books! If you are a reader and like to escape into make believe, then this is just right for you.

I will say, that these are slightly used, but in great shape. But I'm all about recycling and hope they will make someone happy. I've also heard and agree that the Harry Potter books start out pretty *simple but as you continue the series they get better and more in depth! I heard books 7 and 8 are awesome. I just haven't gotten there yet!

Good luck! Here is how to enter:

1. Become a follower or tell me if you already are

2. Subscribe by email on the right of this blog.

3. Share this on your Facebook Wall.

THEN, Leave me a comment telling me you did and also tell me, would these be for you or a friend/family member?

Happy Reading!

Midnight secret giveaway....

2011-09-19T20:36:00.002-05:00

coming soon....shhhhh....

Monday's Giveaway!

2011-09-19T07:57:00.004-05:00

Good morning! It's time to have some fun!

Our first Giveaway is something that can help those of you who have allergies:

This can be especially good for Lyme patients because we are on so many medications, it's hard to know what will interact or not. Plus, we are so tired of swallowing pills, it's nice to try some more natural ways to deal with congestion and allergens.

The Neti Pot

Here's what they say about the Neti Pot:

"If you're one of the millions of Americans dealing with sinus problems, you know how miserable the headaches, facial pain, and clogged nasal passages can be. In their search for relief, many sinus sufferers have turned to nasal saline irrigation, a therapy that uses a salt and water solution to flush out the nasal passages.

Although several methods of nasal irrigation exist, one of the most popular is the Neti pot -- a ceramic pot that looks like a cross between a small teapot and Aladdin's magic lamp. Although nasal irrigation using the Neti pot has been around for centuries, its use is on the rise in the U.S., thanks to an appearance on The Oprah Winfrey Show and a fair amount of news coverage. The Neti pot originally comes from the Ayurvedic/yoga medical tradition." ~WebMD.com

It's Giveaway Time!

2011-09-18T13:31:00.003-05:00

Starting tomorrow, I will be posting one free giveaway a day for one week!!

Why, you ask? Cause, us Lymies, need a little fun once in awhile, agreed?!!?!

So check back tomorrow for some fun surprises!

Winner will be chosen at 9pm every night and posted the next morning.

All prizes include free shipping to you, yet only US residents can enter to win. (sorry!)

Instructions on how to enter will be explained tomorrow. See you then and Good luck!

Her story is very similar to mine....

2011-09-15T18:37:00.006-05:00

Firsthand, family experience with Lyme disease inspires woman to help others suffering from tick-borne illnesses

Richard Gwin

Tammy Farmer sits with her son Logan, 10, as he plays with his pet guinea pig Stewart. Farmer unknowingly was a carrier of Lyme disease when she gave birth to Logan. Farmer and Logan were diagnosed three years ago. Enlarge photo

Micki Chestnut

September 11, 2011

When Tammy Farmer gave birth to her son, Logan, her life changed dramatically, but not in the usual way.

Without knowing it, Farmer was a carrier of Lyme disease, and it wasn’t until she went through the physical stress of childbirth that she began to experience symptoms like excruciating pain and cognitive impairment. Because the tick-borne bacterium that cause Lyme disease can pass through the placenta, Logan was infected before he was born.

As Farmer left the hospital with her newborn, she began the battle of her life, not only fighting for her and her son’s health, but also for other victims of Lyme disease by volunteering for Kansas Lyme Fighters Inc.

Lyme disease can cause a wide array of health challenges that range from gastrointestinal to neurological to musculoskeletal, making it easy to misdiagnose. In fact, the Centers for Disease Control and Prevention estimates that the 328,128 cases of Lyme disease that were confirmed between 1990 and 2008 represent only 10 percent of the actual cases of Lyme disease, according to the Lyme Disease Association. In fact, Farmer was misdiagnosed for seven years with baffled doctors telling her she had everything from multiple sclerosis to lupus.

At times, she was so devastated by the illness that she couldn’t function. “At my lowest moments, I was in bed, incapacitated, because it hurt so badly. It hurt just to have someone walking on the carpet outside my bedroom,” Farmer said.

Farmer and Logan were finally diagnosed three years ago and started aggressive antibiotic treatment. While she still has bad days, she’s beginning to recover. And she’s using her newfound health to help others who suffer from tick-borne illnesses through a nonprofit group she helped to found, Kansas Lyme Fighters. Her volunteer work has been so transformative in the lives of people who battle Lyme disease that the organization nominated Farmer for the United Way Roger Hill Volunteer Center’s 2010 Wallace Galluzzi Outstanding Volunteer award.

In addition to helping raise awareness of tick-borne illnesses, Farmer runs support groups and works as an advocate. But mostly, she comes alongside those who are sick and offers them support and encouragement.

“Tammy’s strength is building community,” said Peggy Blumhagen, president of Kansas Lyme Fighters. “She has opened her home to multiple people who were suffering and created an environment of acceptance, comfort and love. Tammy rarely shares how she feels except when it helps to encourage people who are about to give up on their life. When they realize how much she is suffering also, they gain courage and strength to keep trying to get well.”

Farmer shrugs off the praise. “After something so devastating has affected my family’s life, I couldn’t help but help others,” she says. “I was sick for years before it was figured out, and that’s not uncommon at all. It happens to people all the time, and their lives are as devastated as mine was. Or worse. I had family to support me, but I know a lot of people who don’t.

“When you go through something like this, you narrow down what is important in your life. People are important, and that’s what makes life go around. Making them feel better, even for just a moment.”

For information or to volunteer for Kansas Lyme Fighters, see kansaslymefighters.org.

Originally published at: http://www2.ljworld.com/news/2011/sep/11/firsthand-family-experience-lyme-disease-inspires-/

My life is upside down.....literally.

2011-08-29T08:34:00.003-05:00

My husband and I are in the process of moving. When we moved here to Kansas, it was because I was too sick to take care of myself or the kids. We lived with my in-laws for a while. Then, we found a little rental house and have been in it for about 2 yrs. It served it's purpose, but it was a very old house and a little tight for a family of 5.

We took a GIANT leap of faith and bought a house this month. I had major reservations about this, since we all now the financial toll a chronic illness can take on a family. And not knowing how expensive lyme will get in my family, it was doubly frightening for me to get into a mortgage loan. But my husband is an accountant and very good at making it work out.

So, I put my faith in God and prayed that He would shut the door if we were not supposed to buy a house. But everything went (pretty) smoothly and now here we are! I love our house, literally, love every bit of it. But my life has been upside down for two weeks now. Our closets are still in boxes and bags, we sill have things in our old house, and cleaning and packing have been our life every second of the day.

Trying to do all this while being sick takes it's toll! I had a very hard day on saturday. Nerve pain, toxic feeling, and a lot of my old symptoms returning. My ear is pounding so hard I can't hear people, which means my vertigo is right around the corner. I can only sleep in one position, cause I get too dizzy if I turn. My neck is so painful all night, and I wake up a trillion times. And on top of all that, I'm sick with a cold.

But over all, I'm doing pretty ok. I'm on another break from antibiotics. My stomach is pretty tore up from all the meds. I'm just not as able to take them like I used to. I'm due for another doc appt. soon, probably over due.

But I just can't seem to get things done, when my life is still in boxes, upside down and inside out. I'm just not able to do much at one time. I have to sit and take breaks. Lately I've been having breathing problems again. I don't know if I'm having a babesia relapse or not. It's been almost a year off babesia treatment. I hope that sucker is gone for good.

So, I probably won't be posting much until our lives have some order to them. I send love and prayers to you all, and keep fighting!

love,

mommalyme

Finally some good news...

2011-08-12T16:29:00.004-05:00

I had been putting off finding a local doctor since we moved here in 2009. My lyme doctor in DC has me on so many drugs, I really didn't need a regular MD. If I got sick, I would just start up my meds from the vast array of antibiotics that are in my medicine cabinet. (*I would first try to let my body heal itself, but if it persist, that is when I pulled out the big guns)

I REALLY didn't want to have a regular MD. Lyme patients are soooo SHAMED by the medical community that it's very very nerve racking and traumatic trying to find one that is somewhat understanding. They either look at you like your crazy, look at you like your a liar, look at you like your an obsessed idiot, or simply dismiss your story and tests and rush you out the door. I've had doctors say, "Go breath in a paper bag", "There is no such thing as Chronic lyme", "There is NO lyme in Kansas" (or Texas), "You just need to take that antidepressant", "We don't know what it is, so we just need to treat the symptoms now.", "It is NOT lyme disease" and "No one dies of lyme disease." That last one is my favorite (not!). If they only knew how many of my lyme facebook friends have past away these last two years! (If your curious, you can click on Lyme Angels in my topic section to the right of this post)

So, you can understand my hesitation to put myself in that situation again. But, I knew I needed a doctor incase something happened to me. I needed a doctor for those favorite female visits, and it's just good to have a local doctor in case of emergencies.

The day of my appt, I couldn't find anyone to watch my kids. And this visit included a pelvic exam, so you can see my dilemma. To imagine my 2, 4 and 5 yr old wondering why mommy is sitting on a table with her legs in the air and someone is looking at her private made me laugh out loud hysterically while also panicking at the same time. What if they tried to peek???Luckily, my sweet husband come home from work to go with us. He stayed in the car while I went inside.

Just filling out the paper work was stressful. It asks: what medications are you on? (are you serious, like 30!!!) Do you have a serious illness? (depends on who you ask) Have you been hospitalized in the past and what for? (Well, misdiagnosed with everything under the sun) Geeze, I started having anxiety just filling out the paper work. Lot's of lyme patients keep there 'lyme diagnosis' from all other medical personal simply because most docs do not believe in it, and they are trying to keep their lyme doctor's name a secret for protection. I decided to leave most of mine blank, and tell my doctor in person, depending on if she was a keeper or not. If she flat out says, she does not believe in lyme, then I would walk out and say "Thank you anyway, but I'm finding a different doctor."

The nurse took me back and didn't say a word to me. She took my weight (I'm about 12 pounds overweight thanks to lyme and meds) and height. She told me to undress and put the flimsy paper towel looking vest around my torso. After that, I waited for 45 minutes. That is a LONG time when you are already nervous to begin with (and your butt naked). I even found myself crying at times, because I was so afraid of how she would receive me. I tried taking long breaths, praying to God that this would go well. I was even practicing some of my responses to questions about my lyme journey. How much do I say? Would she even care?

Finally I hear the knock and she enters. I was immediately calmed by her tone and nonverbal behaviors. Her voice was so warm and inviting, and she apologized profusely for being late. She does some small talk, about the weather and asked where I am from. Then she asked, "What brought you here to Kansas?" Duhn duhn duhn....well...here goes......"Well, actually, I moved here because I came down with a serious illness and needed help from relatives."

And that began our 10 minute (wonderful) conversation about Lyme disease that I will never forget. She listened with open ears, talked to me like I was an equal, showed concern and compassion, and above all else, said she believes in chronic lyme. I was so overwhelmed with joy, that I started crying. She said she wants to be a team with me and my lyme doctor, and help order any blood tests that were needed. (This was HUGE since we just got a bill for over 2,000 dollars from a denied insurance claim) She even said she wants to watch "Under Our Skin" and wrote it down. She was very interested in learning more, and helping with what she could.

I know she is unable to prescribe long term antibiotics for me, but this STILL is a HUGE blessing!!! When I got into the car with hubby, I was in complete awe. I had prayed so hard, and my prayer came true. The lost faith I had in the medical community was restored a little that day! And hubby pointed out, if the kids had been there, it probably wouldn't have gone as good as it did. True, true.

And that is my good news.....thank you jesus. I hope my good news put a smile on your face today! With this disease, we need all the smiles we can take!

Update

2011-08-07T13:47:00.003-05:00

If your wondering where I've been and why haven't I posted much lately....well, to be honest,

I'm

t-i-r-e-d.

and

s-i-c-k,

and just don't have the drive I used to. My new meds kick my butt. They make me very dizzy, fatigued, sick, and plain moody! When I go off, I feel better. But we all know, you have to go through treatment to get better much like chemo....ugh.

Soooo.....one thing I've learned to do is fake it! I'm talking about faking 'being well'. That's right. When someone asks how your doing, you smile and say "fine", or "ok", or "good". Cause I'm frankly too tired to even complain or explain my current state of mind or body. And honestly, I would think hearing about my 'condition' gets old to people.

So, I smile, I do the job, and then when I'm done and I'm alone, I sit, I cry, I hurt. And then I push it back down, deep down, and do it over again the next day.

And guess what??? I'm not alone! I've learned this is what we DO. This is what people with an invisible illness must DO. Cause people get tired of giving sympathy, and some people don't even know what empathy is or how to feel it for someone. And the world does not stop for me just because I'm sick.

Especially kids, they are clueless that you feel like crap. They need you, and you need to be able to care for them. And when I say 'you', I mean 'me'. I will hate the day they learn that mommy is very sick and will never "be better".

So, my update is that I'm feeling fine. I'm feeling ok. I'm doing good. ;)

I send my love out to all my peeps!

hoping for healing!

mommalyme

Lyme Angel

2011-08-07T13:37:00.003-05:00

Donna M. Lizzio

AGE: 57 • Riverside

(nee DiProspero) died suddenly on August 2, 2011.

She was the beloved wife of the late Joseph Lizzio and loving daughter of the late Eleanor M. DiProspero (nee Bourquin). She is survived by her loving father John DiProspero (Bertha Shaner); two sisters, Mary Anne and Linda (Raymond Cerio) and many friends.

Donna was very prolific at writing music and lyrics for movies and Broadway shows.

READ MORE HERE.

My heart is saddened for Donna and her family. She was the administrator of the "Lyme Be Gone" website. I also heard that she led a lyme disease support group in her area and helped many people in their lyme journey. She will be missed by many and we send our love and prayers to her family left behind. You can leave a comment on the above website link.

A family in Need

2011-07-19T07:47:00.001-05:00

This is a VERY well done video. Although tragic and sad, it TRULLY displays the hardships we endure with this disease. It's also a reminder that not everyone responds to antibiotics and get better. There are many that continue to suffer daily.

But it's also an encouraging video in that there are options out there, such as stem cell treatments. I don't think it's a 'cure' but there is an increasing amount of evidence through personal stories that it helps tremendously with pain and symptoms.

PLEASE WATCH THIS!!!!!!!!!!!!!!!!

Senator pushing for Lyme Disease bill

2011-07-19T07:41:00.000-05:00

Update on me!

2011-07-14T09:54:00.003-05:00

After returning from our vacation (which I took 2 weeks off of all meds), I started back on my protocol. I felt great on vacation, except that my vertigo came back. Ugh. That is seriously my worst symptom right now. It hasn't gone away, but luckily, it isn't too severe. I just can't look up or down for very long. In the past, I would be in bed for days on end.

On that note, I did get sick with a nasty head cold. And I was in bed for a couple of days. Jeremy didn't know if I was still breathing one day, cause I seriously slept all day. Vertigo medicine can knock you out!!! And cold medicine on top of that just makes you a drunk zombie. I'm still sick...my immune system just can't fight ANYTHING! But hopefully soon, I'll feel better.

Right now, my medicine regimen should be Minocycline, Ceftin, and Flagyl pulsed. But so far, I've been taking one at a time. My stomach just isn't as strong as it used to be. Plus, these were all new meds and I wanted to make sure I didn't have a reaction to them. Right now, I'm on Ceftin, and since I have a head cold, I wanted to take two weeks worth to knock out any possible strep or something.

Honestly, it is sooooo hard to remember all the pills and liquids I'm supposed to take (while raising 3 kids). If I took everything I was supposed to, it would be over 20 things....and they can't be taken together. So, I need like an assistant or something to help me remember. I'm hoping once school starts I will have better luck remembering.

My main symptoms right now are vertigo, and nerve pain. There are moments I'm limping across the room. But it usually only last a couple of hours, thank goodness. I also have the normal twitching and fatigue and memory problems. That is pretty ongoing though.

Although this year hasn't been as good as last year, I'm still REALLY thankful I'm doing as good as I am. I know and read about all my lyme friends out there that aren't doing as well. But we just take one day at a time and keep fighting the fight!

I'm really considering changing doctors. I love my doctor, and his nurse, but I hate flying. If I change, I would have to drive about 8 hours. Ugh. Either way sucks, but I would prefer to drive. :)

North Carolina

2011-07-09T00:45:00.001-05:00

Local woman battles disease, medical politics

Read article HERE also.

Whitney Corn points out her permenant IV line. Diagnosed with late-stage Lyme disease and building strength to begin treatment, Corn has to take an IV of various nutrients every week. But Corn hasn’t let the disease get her down; confined to a wheelchair, she still managed to dress up for a Katy Perry concert in May.
Erin Wiltgen / News of Orange

By Erin Wiltgen

e.wiltgen@newsoforange.com

(919) 732-2171

The average 23-year-old doesn’t typically rejoice upon discovering she does, in fact, have a disease.

But Whitney Corn has long given up the fantasy of being a normal girl. To her—and her mother, Kathy—the test confirming she had late-stage Lyme disease came as a sort of miracle.

“Oh my gosh, I cried when I saw the positive test,” Corn said. “It was so wonderful to see it. I was so happy to see a positive Lyme test.”

The Hillsborough native had been suffering from the disease for five years—five long years of running from doctor to doctor, chasing possible ailments and potential treatments. Slowly, Corn’s health deteriorated, preventing her from attending UNC-Chapel Hill after graduating high school and eventually confining her to her living room couch.

Though knowing the name of her assailant scored Corn a victory on many accounts, the effects of going five years misdiagnosed still took its toll. The Lyme bacteria, called a spirochete, has now penetrated all of her organs, drilling into her cells and causing immense, constant pain.

“I don’t know which I hate more, the spirochetes that are killing me or the ticks that gave me the virus,” Corn said. “I’ve been sick for years. I feel like I’m dying inside. I feel like something is killing me from the inside out.”

And it seems Corn’s worst battle is yet to come. During her antibiotic treatment—which she will start as soon as she builds up the strength—the spirochetes will react to the drugs by releasing a toxin, causing seizures.

“When they release these toxins, your body can’t get rid of them as fast as they’re releasing them, so your body goes into what’s called a Herxheimer reaction,” Corn said. “It puts a lot of people in the hospital. It makes you terribly, terribly sick. So I’m terrified. I would take any kind of improvement, any kind of improvement. But I’m terrified of this antibiotic treatment because of how sick it’s going to make me.”

Given the state of Lyme disease in North Carolina—and across the country—Corn is lucky she has received treatment at all.

“Lyme disease is very political,” she said. “It’s very hush, hush. Some doctors won’t treat you even if you get a positive test.”

Many doctors, in fact, insist that Lyme disease doesn’t exist in the state at all despite cases cropping up all over.

“I had the head of infectious disease at Duke hospital five years ago tell me that there was no Lyme in North Carolina,” Kathy Corn said. “And that statement I have heard over and over and over. But we have met so very many people. And they let it go.”

Lyme disease struggles in North Carolina may stem from confusion with another, similar disease.

“The issue about it being in the South has always been mired in the discussion of the possibility of it being a different type of tick and a different type of disease that’s not actually Lyme,” said Dr. John Pittman, Whitney Corn’s doctor at the Carolina Center for Integrative Medicine and an advocate of treating Lyme disease. “It’s a similar illness and has the same treatment.”

Pittman said veterinarians in the state actually first began documenting Lyme cases in dogs in 1993. One school conducted a study by fencing off an area of national forest, trapping deer, picking off ticks and testing them; 15 percent carried Lyme.

Around the same time, the CDC began requesting all states to report cases of acute Lyme disease by watching for the bull’s eye rash, joint pain and a positive antibody test.

“It’s a very basic, simple test never really designed for screening ill patients,” Pittman said. “It was more for epidemiology purposes. Here they were saying, let’s use this for diagnosis, which has a horrible false negative rate.”

Even with using the test and only considering acute cases—less than 50 percent of people who contract Lyme disease get the bull’s eye rash, according to the International Lyme And Associated Diseases Society—North Carolina still reported between 1,500 and 1,600 cases.

“And yet you still have physicians and, worse yet, infectious disease people who somehow are disconnected to the real epidemiology,” Pittman said. “Here we have all these cases being reported, but you go to Duke or UNC and they would say that there’s no such thing as Lyme disease in North Carolina.”

Many doctors have even lost their medical licenses—or had it restricted—for treating patients for Lyme disease, Pittman said, including a North Carolina doctor, Dr. Joseph Jemsek, who was sued by Blue Cross & Blue Shield and forced to leave the state to continue his work. He now operates a clinic in Washington, D.C.

In many states, patient groups have appealed to legislators to pass laws protecting doctors. In North Carolina, Pittman and a group of other alternative therapy doctors turned to the legislature, explaining to them the battle with the state health department and medical board.

“We had people with their jaws hanging open,” Pittman said. “It was shocking the number of people that we met who had known people with Lyme disease or even had it themselves.”

The legislature requested the health department hire an epidemiologist to oversee and track Lyme disease. The health department and medical board have since sent out notices to the state’s doctors informing them of the threat and how to diagnose and treat it—but to very little progress.

“We’re still getting patients saying, ‘My doctor says Lyme disease doesn’t exist,’ ” Pittman said. “I’ve had some conversations with the head of the medical board. They’re coming around even though they went on the warpath. They now realize that this is real. We’ve been talking about how to handle this; at this point [the head of the medical board] said that there’s been enough notification to the doctors, and you’re getting reports of physicians still refusing to treat it. We need to report them and reprimand them.”

For Whitney Corn and her fellow Lymies, as they call themselves, hearing the continued denial and knowing others are falling into the same despair remains a source of anger as well as mystery.

“They say that it’s not in North Carolina, that these ticks don’t come down South,” Whitney Corn said. “I guess they think they turn around at the Mason-Dixon line and go back. It’s so ridiculous. And there are people like me who are suffering.”

Want to help?

Whitney and Kathy Corn are holding a raffle to raise funds for Whitney’s medical treatment, since insurance doesn’t cover late-stage Lyme disease. The raffle will be held July 9 at 4 p.m. at Schley Grange Hall.

To buy raffle tickets, make a donation or to volunteer, call (919) 602-5555.

Prizes include:

First-place—a 55-inch Vizio LCD HD TV.

Second-place—a photo sitting and 11-by-14 portrait donated by Kent Murray.

Third-place—a full auto detail donated by Superior Auto Detail.

Lyme in the News

2011-07-06T22:15:00.005-05:00

This is the first PUBLIC news coverage I've seen talking about Congenital Lyme:

Watch Video HERE.

I'm SO thankful that this man is speaking out and fighting for us. I don't know why certain people think this is something 'new'. It clearly states on the CDC website (Center for Disease Control) that pregnant woman with lyme disease can have miscarriage and stillbirth.

That means that lyme can infect a fetus...and if that fetus is not being treated for lyme, or the mother, then it only makes sense that her baby is at high risk of infection.

Hopefully one day, they will have better medications to prevent this from happening.

I'm losing my mind - literally.

2011-07-05T13:58:00.006-05:00

Having an invisible illness comes with it's own challenges. People have a hard time 'remembering' that you are sick unless you have some sort of visual reminder, such as a wheel chair, hair loss, weight loss, etc. If you look the same as before you were sick, like me, then it can be hard for people to remember to have compassion for you and all your symptoms, especially the ones that involve the brain.

The brain is the central location of most of your symptoms. It is where your body sends and receives signals including pain, sleep, memory, cognitive function, and signals involving the central nervous system. Lyme Disease has been PROVEN to cause inflammation of the brain. This can result in a vast array of symptoms including altered moods (Panic, OCD, Anxiety, Depression, Suicide Ideation, Manic States, etc), seizures, convulsions, head pressure, migraines, coma, and even death.

There were times when I was very sick that I 'felt' my brain swelling. I'm not sure if that is even possible, but I had moments where I would lay in bed or on the couch and my symptoms would migrate up my body (very slowly) and eventually go to my head. Then, my ears would be hyper sensitive, as well as my eyes, and my brain felt like it was getting 'tight'. I would hold it with my hands and tell my husband in panic, "I'm either going to pass out or have a seizure!" I couldn't think, walk, talk, anything. I just had to wait until the symptoms slowly migrated down my body again....from my head, down my spine, to my legs and it would start all over again.

The bacteria love to hide in soft tissue where antibiotics can't penetrate, and the brain is one of those places. Other soft areas they love involve the eyes, ears, organs, and especially scar tissue. It's pretty gross to think that bacteria is attacking my brain, and setting up camp in it. But it's true.

Alan MacDonald, a researcher and scientist, found 7 out of 10 Alzheimer's patients had the lyme bacteria in their brain. It's a fact that Lyme can cause brain fog, dementia, and full blown alzheimer's. Many lyme patients have 'white matter' on their brains similar to Multiple Sclerosis. Almost all of lyme patients complain of 'brain fog' which basically is the feeling of having dementia but knowing it. It seriously feels like your brain is fried. Many can't hold a job because of the inability to think 'straight' anymore. Other's are labeled as stupid, or faking it.

When I started going downhill with my illness, I noticed the feeling of not being able to think clearly. Like I was suddenly loosing touch with reality and how to process information. I remember telling my husband when we were on the 'hunt' for an answer to my medical problems, "You are going to have to search and fight for me, when I can't do it anymore." It was very scary to loose the ability to think. Then, after I started treatment and began herxing, my brain fog went to the extreme. I would forget who was sitting next to me, where I was, what my last name was, what room I was in.....don't even ask me to add 2 plus 2. It was so bad, I never thought I would get back my memory and the ability to think.

Eventually, I started having mini seizures. While trying to fall asleep, my brain would 'jolt' (like a shot of electricity) and my whole body would jerk. It was the scariest thing I've ever experienced. It was like my brain would 'jolt' all the way down to my foot, and my whole body would jerk, repeatedly, like 20 times in a row. (My head would jerk downwards and my feet would jerk upwards simultaneously) I wish I would have gotten 'video' of it, but my video camera was in storage, and my camera would only record for a few minutes. I never knew when it was coming, but when it did, it would last several seconds. This happened for several weeks. Then, I started having big seizures. I would wake up, and my eyes would shoot back and forth very rapidly, and then "BAM" my brain would jolt like someone hit me with a baseball bat. Then everything would go white. A few seconds later, I would wake up again with a huge headache that I didn't recover from for 2 days. I would cry so hard cause I had no control over it and never knew when it was going to happen. Luckily, I only had about 2 or 3 of those kinds of seizures, but they literally were the worst thing I've ever experienced.

Little by little, the brain fog lifted. It kind of feels like a balloon in your brain, and it slowly getting smaller and allowing your brain to have 'room'. But even though I've gotten better, my memory took a bad hit. I don't think I'll ever have my memory back to normal. And this brings me back to my original point. It's hard for people to 'remember' that you have a brain infection that affects your memory and ability to process information.

There are large chucks of my past that I don't remember. There are small chunks of my present that I don't remember. This can be pretty nerve-racking when raising children. Especially when trying to cook. I've also forgotten birthdays, doc appt., what month it is, what day it is, how old I am. And you might be saying, "Well, I forget those things too." But not on a daily basis, repeatedly.

So, the next time I forget something, like what day it is, or a birthday party, or you ask me something and I have a blank look on my face, please understand that it is nothing personal. I try my hardest to be normal, to act normal, but sometimes, I do need to use the "chronic illness" get out of jail free card.

So, I am literally loosing my mind. Maybe one day, I'll find my missing marbles. :)

Lyme Angles

2011-07-01T23:51:00.003-05:00

Two more Lyme Angels to honor:

R.I.P. Nancy Orcutt, age 69. Part of a support group in Florida. Read her Obituary here.

R.I.P. Michelle Heap, age 46. Died suddenly after a tick infested camping trip. Watch the news clip here.

I wish people would understand that tick infections can be fatal. Maybe the media and public would take it a little more serious and give it the attention it deserves.

I wish peace and comfort on these families.

Update on Me!

2011-06-17T23:31:00.002-05:00

I have started a new round of treatment. This is to cover another co-infection that often comes with lyme called Bartonella. Usually, docs will prescribe Levaquin for Bart, but since I'm allergic to that drug, and I didn't do well on Rifampin, we are trying Minocycline.

I have to say, it is hitting me hard BIG time. I have light sensitivity, ringing and banging in my ears, numbness in my left face and neck, heart palpitations, extreme fatigue and brain fog, crazy dreams and nightmares, dizziness, among others.

I'm hoping this means it's killing something. I read that this drug penetrates the brain better than other drugs, so it could be hitting something I haven't hit before.

This drug also has a lot of possible bad side effects, including causing Lupus. So, please say a prayer for me. I'm hoping I can take a break from meds while on vacation. Pray that I will continue to heal, continue to get better, and have some symptoms free days again. I miss those!

I will not be blogging for the next 3 weeks. My family and I will be on vacation and I've also decided to take a break from it. I wish everyone a wonderful July 4th weekend.

2 more Lyme Angels

2011-06-16T10:20:00.002-05:00

Sadly, we have lost two more to this horrible disease. I know there are probably many more that I don't hear about, but here are two that I heard about recently:

Bryan Bower (When the Pain is Simply Unbearable),

As a kid growing up in southern California in the 80s and 90s, Bryan Bower was a bit of a daredevil: BMX biking, rollerblading, skateboarding, snowboarding—never a show-off, but always pursuing his jumps and thrills. As a college student, he discovered a new passion, rock climbing. He went everywhere with his new best friend and climbing buddy Rhyan. Joshua Tree, Tahquitz, The Needles and Malibu Canyon were southern California favorites. In his early 20s, Bryan started training to climb Yosemite's El Capitan, practicing with one of those folding ledges that you haul up and sleep on when you’re half way up the 3,000-foot granite face. All that came to a screeching halt about six years ago

when Bryan was struck by a series of bizarre symptoms: debilitating headaches, brain fog, intense pain in his spine and shoulders, night sweats, difficulties with his balance, sleep disturbance and depression. That prompted a series of doctor appointments which, after many twists and turns, eventually led to a diagnosis of Lyme disease. By this time, the infection was deeply entrenched in his brain and central nervous system.

An amazing day!

2011-06-15T19:12:00.003-05:00

The best part of the day, I got to finally meet in person, Peninah!

Proud to be running for my fellow lymies!

Lyme Flags with names of Lymies from around the world. Over 1200!

7. What To Do When Your Friend Has An Invisible Illness - ME / MECFS / CFS

2011-06-15T19:12:00.000-05:00

This video does an amazing job at describing what it's like living with an invisible illness. Although he is talking about ME (Myalgic Encephalomyelitis), you could very well plug in any illness, including lyme.

The Race is on!

2011-06-10T08:40:00.002-05:00

Tomorrow is the BIG Lyme Fundraiser 5k Run and 1 mile walk! I can't wait! I think there are about 60 participants and lots of prizes! I trained as best I could with a chronic illness and having to take care of 3 kids under the age of 6. :) I probably won't be able to run the entire thing, but at least half if not more. I run about as slow as a turtle, but the turtle wins in the end, doesn't he?!?

I want to THANK everyone who has helped pledge and support this event. Now, we just need to trust God that all the unfinished details will come together and it will be an awesome day!

I will post pictures next week! Wish me luck!

Another Lyme Angel

2011-06-05T08:22:00.002-05:00

Our tribute for Angela Quinn Hausman… Read full blog post Here.

In her father’s own words: “Angela had Lyme Disease. She was bitten by a tick in San Diego over 10 years ago. Doctors treated her for everything under the sun until she finally found a Doctor who specialized in chronic diseases. They almost immediately diagnosed her with Lyme Disease. She suffered for years and the stupid medical profession still won’t admit to the world the devastating effects of that disease. Lyme Disease has now taken another life. She was 36 years old and leaves behind a great husband and two beautiful children. She was my pride and joy and I marveled at all her accomplishments during her short life. She was a magnificent daughter and I am so proud of her. I’ve never before felt the agony I’m feeling now.” ~Steve Quinn

Hey Texas patients!

2011-06-05T08:20:00.001-05:00

Texas legislature passes Lyme bill recognizing long-term antibiotic treatment as option for persistent disease

Read article HERE.

Mayday.MOV

2011-06-02T21:14:00.001-05:00

Another case of congenital lyme and sexually transmitted lyme. :(

Melissa's blog

2011-05-30T08:30:00.007-05:00

Wow. I read such a powerful blog post this morning and thought I would share.

Again, this is NOT my post but her story is very similar to mine.

You can visit Melissa's Blog HERE.

Here is her recent post about Lyme, Kids, and Autism.

Congenital Lyme Disease - Three words I wish had never heard. I would be much less distraught if this fight was between me and Lyme alone. But, there is a chance that won't be the case. There's a chance that I passed this disease on to my children in utero.

This week, my husband and I took our children to a local doctor who is considered Lyme-friendly (meaning he won't laugh you out of his office when you say you suspect your child contracted Lyme in utero.) We found out very quickly that finding a doctor who will believe you, test you and treat you is battle #1 in this crazy Lyme fight. And that is for adults. It is an even bigger battle when it comes to kids.

Case in point: One of the first things I did was contact our children's pediatrician to inform her of my diagnosis (CDC-positive for Lyme Disease) and to schedule an appointment to get them tested. I was met with confusion and opposition. She requested I see an Infectious Disease doctor (a specific one here in Central Florida, that I found out later has laughed in the face of many a Lymie), so that she can become more informed and better help our children. While I appreciate the sentiment and understand her thinking on seeing an ID doctor, I was disappointed and frustrated that she wasn't automatically in our corner, ready to do whatever is necessary to help our children.

The search for a LFMD
So, my hunt began for a Lyme-friendly, Lyme-literate Pediatrician in our area. One of my new Lyme friends who is struggling with her children's recent Lyme diagnosis, told me about a Facebook message board for parents of children with Congenital Lyme. Thank goodness, I thought! Surely they will know of a doctor who can help. While the members of that board are highly supportive, not all of them live in Central Florida, and those that do have learned to keep their doctors names quiet (sometimes at the request of the doctors themselves), because if that doctor is discovered to be treating Lyme for children, he or she could lose their medical license, leaving many parents without treatment options for their children. This is a scary prospect, especially since it is not safe to stop treatment mid-way, especially in children.

Finally, my good friend Kathy referred me to someone who used to live in Central Florida: Helen Metaxas Raser. Helen is an activist and advocate in the Lyme fight. Her daughter, Teri, is fighting for her life. They moved to Washington so that her daughter can see Dr. Klinghardt, a renowned doctor in the area of Lyme treatment. Helen recommended we take our children to a Lyme-literate doctor about 40 minutes away, North of Orlando, for testing. I am forever grateful to her because although we may have to go out of state eventually if our kids require treatment, I had hoped to get their initial tests done locally. In addition, she has been a tremendous support and source of information in my search for direction.

You Are Now Entering The Twilight Zone
I contacted the doctor's office she recommended to confirm they would test our children. The whole experience was bizarre (partially because I still feel like I am living a bad dream, waiting to wake up and realize we aren't going through this nightmare.) The responses I got from the office staff on two separate calls were cryptic and seemed almost rehearsed. If our children were due for their well visits, they could see the doctor. If not, they would see a PA and he/she could consult with the doctor about the possibility of Lyme. They would give us a script for the labs and it would take approximately 30 days to get the results, as the labs would be completed out of state. We would need to come into the clinic-side of their lab, where appointments were not necessary. Just show up during business hours, they instructed. So, we did.

The outside looked nice enough, but the inside was a bit discouraging. The floors looked like they hadn't been cleaned in months. They had two toys in the waiting room that were filthy and broken. But, we were there on a mission to get a script for Lyme testing.

We saw the PA, as they said we would. Here's where it got even more bizarre. Initially, she acted like she couldn't understand why we were there and why we would think our kids have Lyme. I spoke up immediately: "We came here because we were told that this doctor believes that Lyme is transferred to the fetus during pregnancy." She changed her tune immediately: 'Oh, he does!' Huh? The only thing I can guess is that they are being careful with how they respond to cases of Lyme. So many doctors have lost their licenses for treating Lyme, so I can't really blame them for being cautious. (*NOTE: I have purposely withheld this doctor's name for this reason. However, if you are a parent who is searching for a doctor in the Central Florida area, please contact me. I will be happy to share all that I have learned with you, including this doctor's information.)

I had hoped the doctor would pop in and that we would have questions answered and fears abated on this visit. I had grand visions that he would be straight with us about the risks, treatment options, the chance that my kids will lead a normal life and so on. But, instead we had the PA, who was nice enough, but clearly not informed (or was just being overly cautious.)

LLMD and insinuated that we could see him next time since she consulted with him, even without a previous well visit there.

So, we left there with all of the fears we had walked in with. But, we had a script for testing...and that's what we needed most at this point. One step at a time, right?

Treating Congenital Lyme
I still have a lot to learn, but one thing I have read over and over again in my research is that there is not a cookie cutter protocol for treating Lyme Disease, in adults OR children. Every person is different - infected with different bacteria, individual immune system issues, different toxic loads, differing financial circumstances - and will require different treatments. Lyme-treating doctors often refer to each patient as a puzzle. What works for one will not work for another, so each case requires different courses of action. There is a fair amount of information on treating adults with Lyme, but very little (that I can find) on treating children with Congenital Lyme or for that matter, children who have been infected by a tick directly.

Many a parent has told me that there are two schools of thought when it comes to Congenital Lyme: 1. Treat before it is too late so that the bacteria doesn't become too deeply buried to successfully treat OR 2. Don't treat unless there are symptoms because you may 'awaken the beast.' You see, when you treat Lyme Disease, the 'bugs' die off, releasing many toxins into the system, increasing current symptoms and sometimes causing new symptoms to arise. Sometimes these new symptoms do not go away after treatment is completed, so the child is sicker than they were before they started treatment. There aren't words to describe how hopeless this makes me feel. I may have given my children a debilitating, life-threatening disease for which there is no known cure and treatment is risky, at best.

One of the doctors that has been highly successful in treating Congenital Lyme is Dr. Charles Ray Jones. Dr. Jones is one of many doctors who has fought legal battles for treating Lyme. Here is a speech he gave on the topic at the 2008 Lyme-Induced Autism Foundation Conference. Another highly acclaimed doctor in the Lyme community is Dr. Dietrich Klinghardt. Here is a speech he gave in 2009 that discusses Congenital Lyme and the link to Autism, the link to metal toxicity and more. From what I can tell, Dr. Klinghardt's treatment protocols are believed to be the most cutting edge. A good friend and fellow Lymie read that approximately half of Dr. Klinghardt's patients are children and a significant amount of those children have Autism.

The Lyme-Induced Autism Theory
As a parent, I have followed Autism research and the vaccination controversy very closely. It was fascinating to learn that there is a potential Lyme/Autism link. There is a foundation dedicated to this, the L.I.A. Foundation (L.I.A. stands for Lyme-Induced Autism) and many Lyme-literate Pediatricians, including Jones and Klinghardt, believe there is a link and that the hotly debated MMR vaccine can be one of the Autism triggers when Lyme is present.In this video, Dr. Warren Levin explains his experience with Lyme-induced Autism.

My children have both been vaccinated. I was terrified of the MMR vaccine and therefore had our oldest vaccinated for each disease individually (Mumps, Measles, Rubella), instead of all in one shot. Apparently, this is no longer an option, as the MMR manufacturer no longer offers this option. And as an added bonus, another live virus, the Chicken Pox vaccine, has been added to the MMR, our children's pediatrician offered encouragingly on a recent wellness visit with our youngest. What?! Has everyone gone insane? The MMR caused enough controversy on it's own. Now they are ADDING to it? They certainly aren't making the choice very easy for parents.

In my opinion, vaccines are risky as it is. They contain many toxic chemicals and are given out at specific ages, regardless of weight. To me it was always a choice of the lesser of two evils: vaccinate knowing there are risks or don't vaccinate and hope our children do not get a dangerous illness. On this topic, Lyme changes things for me. And it should be a careful consideration of all parents, as many doctors feel Lyme is an epidemic and many, many people are not aware that their vague symptoms are actually Lyme.

Worrying for Good Reason
I still have a lot to learn. I still have so many questions. I still don't know if my children have Lyme and if they do have it, I don't know if they will live a normal life because of it.

Some may say, "Why are you worrying about this when you don't even know if they are positive yet?" Well, if you are a parent, surely you understand the fears I am experiencing. Even if you aren't, surely you must understand. These are my children, who I would do anything to protect. And this is one 'boo boo' I may not be able to make better.

A few family and friends have recently reassured me: "Parents give things to their kids all the time...Scoliosis, Cancer, short stature, bad teeth." While I appreciate that logic, if my children do have Lyme, the spirochete (corkscrew-shaped bacterium) could be 'eating away' at their brain, their heart, their muscles, their nervous system as I type this. They could wake up one day paralyzed or unable to stand without blacking out (two cases I have learned about in my research). They may spend their lives fighting a disease that is evasive and difficult to treat. They may become aware that they are 'different' and face social isolation from their peers. Many kids with Lyme fight depression, severe anxiety and many often contemplate and attempt suicide. Even if they show little signs, they will spend their lives on a very strict gluten-free, dairy-free, sugar-free diet, which is challenging to follow in this pizza, chocolate, carb-loving world we live in.

Every parent I have had the opportunity to speak with that has been diagnosed with Lyme, has children who have also tested positive. Their stories are heartbreaking. Tiffany, a mom I met through one of the message boards through Facebook, recently found out four of her five kids tested positive. She is waiting for the results of testing on the fifth. Helen, who I mentioned earlier, has two children. Her oldest is symptom-free to this day and is therefore not treating. The youngest, her daughter Teri, made it into college before becoming seriously ill. As Helen puts it, she was: "fine one day and down the next - and has never recovered since." Her symptoms include "severe dysautonomia - where she can't sit up or stand more than a few minutes without starting to black out, seizures, horrific headaches 24/7, heat intolerance, brain fog, chronic fatigue, bizarre neuro issues, etc." Their lives now revolve around getting her well.

Other parents talk about how their children battle illness constantly due to their weakened immune system that is characteristic of Lyme patients. Many of them are very sick from their own battle with this disease and it is all they can do to take care of themselves, let alone their children. Some call Lyme Disease a disease for the rich, because some of the treatment options cost thousands of dollars a week.

My husband's aunt was diagnosed with Lyme a few years ago and she has a child who is autistic. As far as I know, he has not been tested for Lyme, but it would be interesting to see the results, considering the research that has been done in recent years.

These are just a few of the reasons I worry. This is what is keeping me up at night. I pray my children are spared from this disease. I hope the worst they experience is having to watch me go through this. I hope that my son's chronic leg pain is just growing pains. I hope my daughter is just petite and not experiencing what doctors call 'failure to thrive.' Chronic leg pain and failure to thrive are both found in kids that test positive for Lyme. Most of all, I cling to the hope that if they do test positive, that there is a doctor who can cure them or, at the very least, make their experience better than my paranoid mind is envisioning it. In the meantime, I am researching and planning and contacting doctors that may be able to help...and researching some more.

My Plan of Action
I am depressed. I am distraught. I am frustrated. And I am a type-A personality.So, I don't sit still well. And I definitely don't give up without a fight. So, regardless of whether my children's tests come back positive or negative, I am on a mission. A mission to...

1. Eradicate this terrible disease from my family - if the kids test
positive, or my husband (I'll have to take that on in another post
entirely.)

2. Educate myself and my community of fellow parents (and anyone else who
will listen) about the risk of Congenital Lyme and how to prevent tick
bites and infection.

3. Get something substantial published on Congenital Lyme that parents and
interested physicians can learn from and act on, since to my
knowledge, there is nothing of the kind at this point. I am reading a
great book right now entitled 'Insights into Lyme Disease Treatment' by
Connie Strasheim. It is an excellent resource for anyone suffering from
Lyme, but there needs to be a book that is just as informative, just as
specific as this one that tackles Congenital Lyme and treating tick-
borne illness in children.

4. Inform local doctors who I come into contact with about the risks of
Congenital Lyme and how to educate themselves about providing successful
treatment.

5. Support organizations that are conducting research on effective
treatment of Congenital Lyme Disease.

Now, I have taken many a course on goal setting and I know that setting goals is just the first step. So, with that in mind, I have done at least one thing, taken one step, towards achieving each of these goals: I started this blog; I had our children tested for Lyme; I've researched doctors specializing in treating children for Lyme; I've contacted the publisher and author of Insights into Lyme Disease Treatment to inquire about current projects and to hopefully plant a seed; I left a message for my Dermatologist with my diagnosis and encouraged him to research it, as he may have the opportunity to diagnose many patients present with cysts and refer out for effective treatment; I met with my Primary doctor to inform him of my diagnosis and find out his stance on the disease. He informed me I did not have Lyme Disease, despite my CDC-positive test (and a request for information from the Health Department), and offered to put me on anti-depressants (true story.); I created information packets for our pediatrician, primary doctor and OB/GYN, to be mailed out in coming weeks. And I made a donation to Turn the Corner Foundation, one of the few organizations funding research on Lyme.

I will not give up. I will continue my fight against this disease, and if need be, I will teach my children to fight too. And hopefully someone somewhere is doing research that will make a difference for children fighting this terrible disease.

Congrats!!!!

2011-05-29T22:51:00.002-05:00

Guess What? I picked three winners this time! So Congrats to Melissa A., Shelly S and Brenda!

Just send me your address either on facebook or my email brandimc@live.com and I will send you your magnet!

That concludes my Blog Giveaway's for the Month of May! The rest of the magnets will be sold at the Lyme Fundraiser in 2 weeks.

Have a great day!!!

Last Blog Giveaway for May!

2011-05-25T16:46:00.003-05:00

Lyme Disease Awareness Month is almost over. Time to give away another magnet! I only have about ten left, so I thought I would go ahead and give one away!

To enter: Leave a comment. Make sure to leave your name and check back for a winner on May 31st.

To enter a second time: Become a follower (or if you are already a follower), leave a 2nd comment and let me know.

That means you can leave up to two comments to enter!

Random Drawing on Tuesday May 31st!

MayDay Speach at Rally in Washington DC May 21st 2011

2011-05-23T13:57:00.001-05:00

10 Tips From 10 Years Sick

2011-05-23T11:55:00.001-05:00

Found this great article about living with a Chronic Illness....Click HERE.

Lyme Walk/Run Fundraiser

2011-05-19T18:50:00.002-05:00

Hey Everyone,

I'm attempting to run a 5K for Lyme Awareness and to help raise money for patients who cannot afford treatment. If you would like to make a pledge for my team, please hit the 'give' button below. My team has raised $180 so far and hope to get to $300!

If you are a LYME PATIENT and donate, I will write your name on my shirt, "Running for ____" Just let me know you have done so. This is a great opportunity to do something for Lyme Awareness Month! Thank you everyone!!!!!

Join Kansas Lyme Fighters for Lyme Awareness

Walk/5K Run on June 11, 2011 at the Lawrence Rotary

Arboretum between 5 pm and 8 pm.

See details at www.kansaslymefighters.webs.com

VOLUNTEERS AND SPONSORS NEEDED!

Have Questions? Please email Peninah at kansaslymefighters@yahoo.com

MAYDAY! Lyme March at the White House!

2011-05-18T17:55:00.001-05:00

Please email or call your local news channels and let them know about this event in DC!

Time	Saturday, May 21 · 11:30am - 4:30pm

Location	Lafayette Park Washington DC

Created By	Timothy Grey, Carolyn Booth Thomas, Allison Hoffmann-Caruana

More Info	Lyme Underground invites everyone in the Lyme community and all support groups to stand with us as we demand a complete revision of Lyme disease diagnostic and treatment guidelines. We will meet in Lafayette Park Washington DC at 11:30 AM on Saturday, May 21, 2011. Bring signs, bring banners, bring your VOICE!!! We have been encouraged to remain silent for far too long. We must raise our voices to a level that can no longer be ignored. We must GET LOUD!!! STAY LOUD!!!!! This demonstration of awareness is held in conjunction with other actions throughout the country and the world as a part of Lyme Disease Awareness month. Please, do what you can to make a difference. This event will be needing volunteers and people to help coordinate. For more information and to volunteer for the event call please contact lymeday2011@gmail.com

Symptom Update

2011-05-16T12:02:00.002-05:00

I secretly took about 3 months off from meds, and was feeling really good. But slowly I would feel an ache here and there, stiffness, and soon enough, more symptoms followed.

I have relapsed. :(

Yesterday was a very hard day. The fatigue is so severe, it took all the energy I have to even 'think' about walking across the room. I have that 'skin is getting electrocuted' feeling, with some nerve pain in my lower back.

This is still really minor considering how much I have suffered in the past. So, I'm going back on the medicine wagon again hoping I can get the symptoms under control.

I'm still grateful for how much I can function and that I am alive. I just wished I could have stayed in remission longer. :(

Keep fighting the fight my friends, until the very end!

And The Winners Are:

2011-05-15T12:44:00.002-05:00

Congratulations to Bambi A. and Yvonne C. S. for winning a car magnet! I decided to draw two names since I had so many competing!

Check back soon cause I will give away another one very soon!

Don't forget, you can donate on my blog and receive one also! Thanks for participating!

Stupid Blogger!

2011-05-13T14:33:00.002-05:00

I'm sad to say that because Blogger has been down for two days and was experiencing technical difficulties, some peoples comments got deleted. I will go back in my emails and see if I can retrieve who had left a comment, but please re-enter your comment (if you don't see it) to make sure I see your name.

Thank you and I apologize for any inconvenience.

BLOG GIVEAWAY!

2011-05-09T19:54:00.005-05:00

Leave a comment on this post, and be entered to win a Free Lyme Disease Awareness Car magnet!!! Random drawing to decide winner.

If you become or already are a follower of my blog, your name will be entered twice!

Good luck! Not many people comment, so your chances of winning are HIGH!!! :)

Don't forget, you can also donate money and get one (or more) shipped to you. Read details on right side of blog.

Winner drawing on Sunday.

Controversy Comes to the Capitol

2011-05-09T19:53:00.000-05:00

NHPR.org - Lyme Disease Controversy Comes to the Capitol

This article does a pretty good job explaining the controversy surrounding lyme disease. I'm glad it's getting publicized!

Time for Lyme 2011 Gala Honors Video

2011-05-08T21:32:00.003-05:00

"Tommy Hillfiger's daughter, Ally Hillfiger, along with a former executive of IBM talk about their personal experiences with Chronic Lyme Disease." May is Lyme disease awareness month. Often Lyme disease is misdiagnosed as ALS, MS, Lupus, Fibro and many other diseases due to poor CDC guidelines for testing diagnosis & treatment.

Car Magnets!

2011-05-02T13:08:00.004-05:00

Anyone who makes a ten dollar donation on my blog for the Month of May gets a Ribbon Car Magnet! Just send me an email at: brandimc@live.com with your name and address and I will mail it to you! This includes packaging and shipping. We are trying to sell 25! Help us meet our goal!

I'm donating some of the proceeds to The Wichita Lyme Disease Support Group!

Thank you!

PS. This is a non-tax deductible donation.

Paint May Lyme Green!

2011-04-30T13:10:00.002-05:00

As most of you know, May is Lyme Disease Awareness Month! I get excited to help others learn about the dangers of ticks and how to help prevent tick-borne illnesses. What excites me is if I can help save one person....all my ranting and raving will be worth it!

Please help "Paint May Lyme Green" by putting green ribbons on your trees, mailboxes, doors, or elsewhere. Posters are good too, so people know what the ribbons mean. You can also change your profile picture to something green, or even better, our lyme awareness ribbon!

Another way to help, is to donate money towards a lyme charity or organization. I'm running in the KANSAS LYME FIGHTERS walk/run for a cure, at http://kansaslymefighters.webs.com/

You can pledge for my team! Simply visit the link, hit the donate button, and on the paypal 'purpose' line, write "pledge for Mommalyme!". We have raised $65 dollars so far and hoping to get to $100. This benefits families in Kansas who cannot afford medical treatment for tick-borne illnesses.

I appreciate all my followers and readers, and hope my blog helps everyone have a better understanding about Lyme disease.

thank you!

Lizzy Lyme

2011-04-29T17:54:00.008-05:00

Erin Elizabeth Spillers

Beloved daughter, sister, aunt, and friend to many, Erin Spillers was born June 21, 1980 in Rapid City, SD. She died suddenly at her residence on Thursday, April 28, 2011 from complications of chronic Lyme disease. Cremation will take place at Southern Memorial Funeral Home and a Memorial Mass will be held at Our Lady Queen of Mercy Church, Montgomery, AL, on Wednesday, May 4, 2011 at 9:30 a.m.

Erin loved Alabama football, gardening, dancing, yoga, music, animals, and spending time with her many friends. She smiled through her pain and was always ready to lend a hand or an encouraging word to everyone she met. She will be deeply missed by everyone she knew. Though her years on Earth were brief, she lived them to the fullest, bringing joy to all who crossed her path. She was beautiful on the inside and out, with a smile that sparkled, a generous sense of humor, and a deep capacity for compassion and love.

She is survived by her mother and stepfather, Dr. Michael and Anne Marie Gormley of Montgomery, AL; father and stepmother, Frank and Kimberlee Spillers, of Atlantic, IA; brother, Mick Gormley, of Montgomery, AL; sister, Jessica Winum (Jarret) of Stanley, NY; grandmother, Phyllis Kertzman, of Rapid City, SD; aunts, uncles, cousins, nephews and nieces.

In lieu of flowers, contributions can be made in her memory to the Lyme and Tick-Borne Diseases Research Center, Columbia University, Att: Barbara Strobino, PhD, 1051, Riverside Drive, Unit 69, New York, New York 10032 or athttps://giving.columbia.edu/giveonline/?schoolstyle=56437

Lyme Angels

2011-04-28T22:06:00.006-05:00

Sad to say we have lost another one of our lyme friends. Erin Elizabeth (nickname Lizzy lyme) was part of the lyme community. This is what I found written about her:

"May you be flying with the angels now, Lizzy Lyme. Hearts are breaking all around you as Christ has called you home so soon; so young; after so much suffering. You were a friend to so many, loved by all, and you will be sorely missed. Tears are flowing like rivers tonight as the Lyme community has lost another of its own, Erin, only 28 years old, a beautiful friend. Too young to die, but safe now with Jesus and free of pain."

May we pray for her family....

TOUCHED BY LYME

2011-04-27T09:07:00.001-05:00

TOUCHED BY LYME: After “Rambo daughter” succumbs to Lyme, dad dedicates himself to teaching others

He called Lori his "Rambo daughter," a strong athletic soldier who liked to run marathons. But after a tick bite gave her Lyme disease none of this dad's efforts could save her life. Now, he channels his grief into educating others about how to prevent the spread of tick-borne illnesses.

Read Article HERE.

Leila's Blog

2011-04-25T22:38:00.005-05:00

I found another great Lyme Blog! She wrote the post below and I wanted to share! ( I DID NOT WRITE THIS POST)

Visit Leila's Blog HERE.

(I love Leila's points in her latest post and thought I would share: I highlighted my fav. parts in red.)

-------------------------------------------------------------------------------------------------------------------------------------------------------------------

We're Misunderstood

"It's hard enough having chronic Lyme; it's even harder dealing with critics whose dissent is based in ignorance. If you haven't either lived with Lyme or studied its effects on people (or read my blog!), then you probably shouldn't protest our sub-culture, because you're being both unintelligent and unkind (not to mention closed-minded).

When I first found out I had chronic Lyme, and posted the news to my Facebook page, I expressed my frustration over the lack of Lyme-literate doctors who take insurance. Moreover, I stated that the standard fee for an office visit at a Lyme specialist was approximately $500. A friend, who clearly has zilch, zero, nada understanding of our illness posted a comment stating that I didn't need to see a specialist.

(I tend not to get angry over minutae; a major motto in my life is "Pick your battles." I ignored the friend's comment. Not a big deal.)

Now, months later, after I statused on my Facebook page that I'd spent the day in bed, the same friend left a comment alleging that I am not taking care of my health and suggesting that I get out of bed and be active in order to combat what he perceived as depression.

He was wrong on all accounts. For one, I am as active as I can be while combating a major (major!) illness. (Do people still not realize this is akin to having AIDS? Do people not realize I'm not exaggerating when I say my brain is infected?) In addition to staying pretty busy and productive in spite of this illness, I'm not suffering from depression. And I'm taking pretty darn good care of my health, by eating wholesome, nutritious foods, taking all my medications and avoiding stress. So whatever impression I've made on him is wrong.

Part of me has to question if it's my fault--that I'm not communicating things well, and that's why people make hasty judgments. Still, people should not judge what they do not understand. And the truth of the matter is that some days--very few, but they still exist--I spend most of the day in bed. Not out of laziness, depression, or any mental deterrent, but because I'm so physically ill that I can't get up and do anything. Changing my attitude and trying to be productive, as the friend suggested, isn't applicable because, well, I'm not his teenage children (so maybe he shouldn't talk to me like I am).

If you know me at all, you know that I'm not a chronic whiner. My "pick-your-battles" motto applies to venting my frustrations, too. I overwhelmingly avoid excessive complaining on my Facebook page, but every now and then I'm gonna say just how exhausted I feel. That's because I'm frank. Very, very frank, honest, bold. But if you knew the half of what I'm experiencing, you'd see my Facebook page as surprisingly uplifting and positive. So, if you know me--if you really do know the person that I am--you know I'm an optimistic, honest, frank, and soulfully deep person.

Another friend recently criticized me and essentially the entire Lyme community for labeling ourselves "Lymies". His claim is that we are choosing to identify with the disease, rather than blend in with the rest of the world. "I'd hate to be called a Cancerie if I had cancer," he said.

Oh, boy. It's time for Mama Leila to do what she does best: Explain. Stay Calm. Be Patient. Re-Explain if Necessary. Not Get Mad. (Alright, maybe it's not what I do best, but a girl can try.)

So, ahem, here's the thing about us Lymies.

We need our community of fellow Lymies. We are walking a very lonely, thorny path in our lives, and at every kickback on this path there are mountain lions and snakes and porcupines ready to jump at our feet. Our disease has no known cure, only treatments. Our disease is misunderstood in the medical world, with medical doctors and the Infectious Disease Society of America denying the existence of chronic Lyme and rebuking its treatments.

You can't compare us to cancer patients or "canceries". Although they suffer greatly, and I don't mean to minimize their plight by saying this, at least they have the wholehearted sympathy, support and understanding of the world behind them. The very large majority of people don't have a clue what Lyme patients endure, and when given the opportunity to learn about it, they generally don't care to, until it's affecting them or a loved one. People still ask what the big deal is about Lyme and assume it's easily treated with antibiotics. Nobody questions the severity of cancer or AIDS.

Which brings me to my next point: We call each other Lymies because we want our voices to be heard. We want to identify with Lyme disease, because we're desperately trying to publicize our plights, and get our friends and colleagues who unknowingly suffer from Lyme in silence to see doctors. The world needs to listen to us. We're gonna keep calling ourselves Lymies and shouting about this disease because we care. If we didn't care, do you think we'd be so obsessed with Lyme? Don't mistaken our chatter surrounding this topic with narcissism--narcissists, by definition, do not care about anyone but themselves.

Ultimately, our name forges bonds between us. We understand each other's asinine quirks and symptoms and side effects because we too endure them. Most of us have spent many years being labeled hypochondriacs or freaks by doctors, and not fitting in with the world at large. So it's a heart-warming relief to have people to turn to when nobody else understands, not even the very doctors whose goal in studying medicine was to help sick people.

I know many of my friends silently question why I talk so much about Lyme disease. For each of the three or four people who've shared this opinion with me, there's ten or more that won't say it to my face. In fact, yet another friend just asked me why I and my other Lyme friend spend so darn much time talking about Lyme. I hope this blog helps them to understand.

And if they still don't want to hear about Lyme, they have the option of tuning out when I write about it on Facebook. It's not gonna stop anytime soon, folks. I plan to keep talking about Lyme disease. Sorry if that's a buzzkill in your martini- and manicure-filled day. At least you can have that martini and manicure; I can't have either. But I'm not complaining. I'm a warrior!!

(For the record, it's not all I talk about. I still talk about kitties, music, current news, and a plethora of other interests. Lyme hasn't swallowed me whole.)

But still, we're not gonna shut up. You'll start hearing more about Lyme disease as it becomes more mainstream in the near future. So tune out or turn up the volume, it's your choice."

Lyme Awareness!

2011-04-21T09:56:00.001-05:00

The Candice Accola Birthday Project: Lyme disease awareness video featuring fans

Most of you know that Candice has been actively involved in spreading awareness about Lyme Disease (if you weren’t aware of this, read more about it here). Candice’s birthday is on May 13th and, coincidentally, May is Lyme Disease Awareness Month.

I’ve decided that instead of making the aforementioned video of birthday wishes from fans, I think we should all come together as fans and create a campaign video to further spread awareness about Lyme. Now, how exactly will this work? Participation is key. Read below for more details! (This may seem complicated, but really it isn’t! I know that the Vampire Diaries fans are super creative, so this is your opportunity to show off that creativity AND spread awareness about Lyme disease.)

For more info, visit her website HERE.

How Lyme can affect the brain and emotions...

2011-04-19T09:35:00.003-05:00

Emerging Diseases

Patients at the crossroads of new diseases and chronic ills.

by Pamela Weintraub

Shadowland of the Mind (Neurological Lyme Disease , Part One)

It is a world eclipsed by strange lapses of memory and broken speech.

Published on December 30, 2008

Read Entire Article HERE.

Here are some of my favorite parts:

"The German neurologist Rudolph Ackermann found that the sickest of these neuroborreliosis patients suffered an inflammation of the brain and spinal cord called encephalomyelitis, also seen in syphilis. When the condition involved the spine it resembled multiple sclerosis and when it involved the brain, particularly the cerebral cortex, it could produce psychoses or seizures."

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"And that's where Fallon hoped his contribution would matter most. His labor paid off. Conducting structured clinical interviews with people from southeastern Connecticut who had histories of Lyme disease he learned that depression or panic could worsen after the start of antibiotic treatment, suggesting a kind of psychiatric Herxheimer reaction that resulted as infection died off. Speaking to the patients, he found that neuropsychiatric Lyme disease and regular psychiatric disease appeared much the same. This was of particular concern since so many patients failed to notice a rash or register positive on standard tests, making it likely that the true cause of their psychiatric condition-Lyme disease-would be missed.

The patients were in psychiatric trouble, to say the least. Surveying 193 patients testing positive for Lyme, Fallon found that 84 percent had mood problems; of those reporting depression, 90 percent had never had an episode prior to Lyme disease, which suggested the two were linked. As for children with Lyme, Fallon showed they resembled accident victims with head injuries. Like adults, they had trouble with short-term memory, word-finding, and concentration. Their performance IQ and spatial reasoning were particularly impaired. The children could still remember and learn-but they processed the information slowly and needed more time for tasks.

Though selected for the study because of their cognitive disabilities, the children also suffered anxiety, mood, and behavioral disorders at higher rates than healthy children. Especially notable was the increased risk for depression and suicidal thoughts. The findings were important because children with Lyme disease could be "misdiagnosed as having a primary psychiatric problem," while the root issue-infection with the spirochete B. burgdorferi-might never be addressed."

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"Not only was she irritable and anxious, she also began to check things obsessively and eventually descended into a deep depression. Her psychiatric symptoms were so numerous, in fact, it was impossible to label her as having just a single disorder. She developed mania with rapid mood swings, from grandiosity to sudden tearfulness; paranoid delusions; auditory hallucinations; verbal aggressiveness; and violent impulses. She also suffered cognitive dysfunction, including trouble in spelling, writing, and verbal fluency. Despite hospitalization and treatment with "every psychotropic imaginable," says Bransfield, the patient declined, her depression becoming so severe that she tried to kill herself.

"This was very different from run-of-the-mill bipolar disorder," Bransfield said. "She kept getting worse, and she had physical symptoms, too. It forced the question: Could it be a reoccurrence of Lyme disease? She was so depressed I believed suicide was inevitable, so with no other option in sight, I began seeking a physician willing to treat her with antibiotics for Lyme disease. No one was willing to take the responsibility, so I wrote the order for intravenous Rocephin myself. It was a lifesaving decision. The patient responded to the treatment and today remains mentally and physically well."

Under Our Skin: Hits home for two moms

2011-04-18T18:25:00.001-05:00

Read article HERE.

Weathercaster, Brooke Landau interviews Daryl Hall about Lyme Disease

2011-04-17T17:29:00.000-05:00

Antibiotics not as evil as doctors make them out to be.

2011-04-13T12:54:00.001-05:00

Long-term use of antibiotic to treat acne not associated with increased bacterial resistance, study finds

It's ironic that doctors refuse to treat Chronic lyme with long term antibiotics (often using the excuse of building bacterial resistance) , but will treat acne, no problem. Hmmm....makes you wonder.

Congenital Lyme Disease

2011-04-06T14:12:00.014-05:00

I keep seeing a commercial on TV showing pregnant tummies and "AIDS" written on them with black paint. The commercial warns mom's about passing on their disease to their newborn and what medications they can take to prevent it. I thought, 'Hmmmm...wonder how many years it will be till there is a commercial for Lyme patients who are pregnant.???' My doctor says the medical community is 30 years behind on Lyme education, awareness and research. I am like, "More like 100 years!!!"

I know people don't want to believe in Congenital Lyme for the sake of the kids (imagining kids with this torturous disease is horrible, I agree), but this is a SERIOUS issue. I've talked to numerous parents (mostly mom's) who unwillingly passed on their tick-borne diseases to their children.

Some of the children have instant symptoms, some have slow-growing symptoms, while others stay in remission well into their teenage years. Some have Autism (including Aspergers), or Bipolar, Depression, Fatique, Anger Problems, ADD, Dyslexia, or stomach issues, digestive problems, low immune system, sensitivity to light, sound, smell, problems sleeping, too much sleep, pain, and so on.

It is a FACT that tick-borne diseases such as Lyme Disease and others, can be passed from mother to child. (even if the mother is on treatment) I've provided research on this subject on this blog in the past, and it is devastating that the medical community is ignoring this very FACT and the consequences families are facing from congenital lyme. Lyme has been found in EVERY BODILY FLUID. That includes....blood, semen, breast milk... You can visit Dr. Jones Website and read more and Lyme and Pregnancy HERE.

The sad part is, most mom's (that I've talked to) would never have choosen to conceive (as devastating as that is) if they knew they had lyme disease. Most mom's are misdiagnosed (as was I) and go on through their reproductive years clueless that they have an infectious disease that can be transmitted to their child.

Like I said, I have touched in this subject before and want to be clear that I am in no way judging parents who have lyme that want to try to conceive while on treatment. There are cases that have been successful. I am only writing about this subject to bring awareness to what is happening to families across the world.

Here are some personal stories of Congenital Lyme:

Check out Amy's blog HERE.

You can read Lynn and Eve's story HERE.

You can visit Shannon's blog HERE.

Visit Jeanne's blog HERE.

There are tons more, but they specifically gave me permission to share.

What's even more scary is that I know of mom's who are in divorce and custody battles with their husbands because the husband's don't believe in lyme or don't believe their children are sick. I've heard of families who are being investigated by CPS because they have their children on long-term antibiotics and 'society' sees that as child abuse. I know mom's who've been accused of making up sickness and projecting it onto their kids (forgot the term for it, but basically lying about their children's symptoms), and been threatened to be evaluated and thrown into a mental ward. I know of children who've been in and out of mental hospitals because of suicide attempts because doctors refuse to treat their lyme. I know children who have had to drop out of school because of their sickness and have been depressed from losing their social lives. It is so sad that kids have to be born with something that alters their entire life in such a negative way.

Its a WAR out there. People are loosing their marriages, their savings, their jobs, their kids.

I know I sound a little cut and dry about this. But believe me, I have wept more tears than I can count on this subject. In 2009, at the same time I was finding out what was wrong with me, I also found out that my kids could have it also. My whole world came crushing down. People looked at me and thought, she's insane to think her kids could have this! I knew the truth though, and I wasn't going to back down.

Imagine all in one day, you find out you have an incurable illness that wreaks havoc on your body and causes pain that you cannot describe in words, a disease that could kill you, and by the way, your kids could be carriers also. I was in total shock. Total complete shock. and I still am some days.

I have cried more on this subject than anything in my life. To imagine my sweet precious children sick one day breaks my heart. To think that I gave them this, breaks my heart. And it leads to questions about their future. My 'fears' set in and I often wonder....are my girls going to have healthy childhoods? Will they be able to date? Will they be able to finish school? Will they get married? Will they be able to conceive? When will the ticking time bomb explode, like it did with me?

I read about a high school boy with lyme and how his girlfriends parents found out about his sickness, and don't want their daughter to date him. I see their point, but it's still a very sad case for him. Can you imagine how he feels?

I know it's easy for people to look at my kids and say, "But they look healthy!"

Well, so did I for 10 years. But I had lyme the ENTIRE time.

My prayer is that no matter what happens, we will have our eyes on God and lean on him always. I pray my children know God and are able to 'see' their purpose in life and to experience his awesomeness even amidst their disease. I pray for a miracle, that all of them will never know what lyme disease feels like, but if they do, that we fight this together until the end.

And to finish my post, I thought I would share the following:

I'm part of a support group online, and they asked the question: Do you test and treat your kids even if they have no symptoms or do you wait until the disease starts showing signs? Here are some of the answers: (they gave me permission to share)

* hi - i was dx'd 5 yrs ago - i have 3 children which we knew i could have passed it to congenitally but they were very healthy and so we took the "watch them closely and see" route. our middle child went from "perfectly healthy" to wheelchair bound in 8 weeks. he was 9 at the time and he became profoundly disabled by the time we got the official dx of lyme several months later. our oldest had a slower decent. our oldest had a slower decent. he remained relatively healthy until age 17 and then it really took over and he was not able to finish his grade 12 year at school. they are both on aggressive abx. treatment now. we've needed to start our middle child that got so rapidly and severly ill on IV abx. our youngest tested neg. initially and so we've just been using homeopathics etc. to keep her immune system strong. unfortunately, she has recently just tested positive - one of llmd's is starting her on a natural protocal. if that provokes a strong reaction then we will put her on abx. she is asymptomatic so far. based on our family's experience watching and waiting is not a safe bet - this disease is relentless and can get away from you rapidly. best bet - at least get a good LLND on board for kids - even if they are asymptomatic

* - I would not wait if you are able to! I have 2 boys with lyme and if I had known I had it sooner then 2008 I would have tested them. I did test then a few months after my diagnosis. Both can not attend school and have to home school with an on line school. They had to leave their friends and all the events they were in like band, track, robotics, etc. It's heart breaking to see it from this end so I know if I had known sooner I would have tested them. My older sons fatigue is so bad and even with treatment he is not improving. He wants to go away to college in a few years and I fear he won't be able to :( IMO waiting just gives the disease time to do more damage and makes it harder to treat. Not to mention that teenagers should be out having fun instead of dealing with chronic fatigue.

* - I had my daughter tested immediately after I finally got tested and just knew she had it too. But I wasn't able to treat her because my ex took me to court to fight it (doesn't believe she has Lyme, etc.). I was too sick to fight him and agreed not to treat her. He even took her for a 2nd test that was negative (although her IgeneX test was CDC positive!). Her pediatrician has always said she has growing pains--HA! She is now 16 and still has joint pains and fatigue but is doing fine in school and getting by. I didn't get really sick until after I had her, so I was able to get through life not treated for a long time (although I can look back now and see I had it all along). BTW--I got this from my mother in the womb too. I have been treating for the past 2 years and have been bedridden most of that time. I am getting slowly better but I can't imagine trying to take care of myself and my daughter at the same time. I wish I could have treated her when we 1st discovered she got Lyme from me but now I'm thinking that maybe there will be better ways to treat it in the future and maybe she'll stay healthy enough in the mean time. I also have the problem that her father has convinced her she doesn't have Lyme now. I guess that means I'll have to wait until she gets many more symptoms before she'll agree to be treated as well. Obviously, I have a very mixed opinion!

* -Both my children have lyme... its A BLOOD DISEASE.. id say rather than it being remotely possible to pass when you are carrying a baby.. its almost IM-possible not to... it doesnt make sense that vets wil happily admit that a dog or cat carryng it passes it to its unborn and humans dont.. well thats what the docs want us to believe..

My girls have not been tested yet, but I hope to get them tested in the future.

We love you Dr. Jones!

2011-04-05T14:43:00.002-05:00

By Tapley Stephenson

Contributing Reporter

Tuesday, April 5, 2011

On his 82nd birthday, Dr. Charles Ray Jones sat in his New Haven office at 111 Park St., surrounded by patient files and wearing a blue tracksuit.

Though it has been a long while since Jones could last run — in fact, he now uses a cane to get around — Jones finds himself in a number of races: a medical one with a debilitating disease, a legal one with the Connecticut Medical Board, and even an academic one with Yale.

Over the past four decades, Jones has treated roughly 10,000 children with severe chronic Lyme disease. Parents from all over the world bring their children to Jones, and many said they consider him their final hope. But despite his popularity with his patients, many in the medical field strongly disagree with his practices, which, they say, treat a form of Lyme disease that does not exist.

Most doctors believe that Lyme disease, a tick-borne illness, almost always presents with a rash, fever or arthritic pain. But Jones says that Lyme disease can have a much wider array of symptoms, such as mental impairment, that can last for years.

Jones has already been brought before the medical board twice, both times receiving fines of $10,000 for procedural violations, which he claims threatens his ability to practice. Jones claims the high fines he received were due to the controversial length of his treatments, rather than because they caused any harm to his patients through his violations. Jones has never been sued for medical malpractice.

“I’m not being disciplined, I’m being harassed,” Jones told the News.

Jones began treating the disease’s symptoms in the late 1960s, before it was officially recognized by most medical professionals. When Yale doctors, led by then-Yale professor Allen Steere, worked to find the source of the disease in 1975, Jones gave the research team evidence by detailing the experiences of his own patients, lending Yale’s academic doctors a clinician’s perspective.

But in the early 1980s, Jones and the Yale scientists split on the longevity of the disease and the academic race to define the disease began. While Jones said he believed that Lyme disease can become chronic if untreated, Steere and other doctors claimed that the disease could be cured with three to six weeks of antibiotics.

More recently, Jones has been in conflict with Dr. Eugene Shapiro, a pediatrician at the Yale School of Medicine, who said he believes there is not enough evidence to support Jones’ theory.

“There is no benefit [to Jones’ long-term treatment], and there are expenses to both the individual and to society,” Shapiro told the News. “As for chronic Lyme, there is no definition and I believe there is no such entity.”

The two have clashed publicly and Shapiro has testified against Jones in front of the Connecticut Medical Board. Neither Jones nor Shapiro would comment about the other personally.

Jones said that despite the criticism from the medical community, he still strongly believes in what he does.

“I became the evil one,” Jones said. “But my kids got better.”

THE PATIENTS

Jones’ patients and their families said their lives would not be the same without Jones’ long-term course of treatment. Many said they have seen their children misdiagnosed with arthritis, dyslexia, or even autism — a result, they said, of the medical community’s denial that chronic Lyme disease exists.

Jones said he recalls one child, Timmy, a 6-year-old who came into his office with his mother, unable to speak or comprehend others. Timmy had been diagnosed by previous doctors with autism, but his mother believed it could be Lyme disease. Jones agreed.

“I remember he was sitting in my lap. He couldn’t talk, but he made eye contact well, showing signs of intelligence,” Jones said. “I looked him in the eye, I touched his cheeks and said, ‘I hope that I have the key that can unlock your brain.’”

Timmy then wiggled out of Jones’ lap and ran around the office, Jones said. Following a positive test for Lyme disease, Jones began treatment.

After roughly five months of antibiotics — far more than the generally prescribed three to six weeks — Timmy saw Jones for a second time.

“He came back four or five months later,” Jones said. “He didn’t run in the door, he walked in the door. He put my hands on his cheeks, he looked me in the eye, and said, ‘Thank you for giving me the key to my brain.’”

The walls of Jones’ office are covered in pictures, cards, and paintings — small pieces of gratitude from his patients. One card has a familiar Y with a bulldog over it.

A current pre-med sophomore, who asked to remain anonymous because of the rift between Yale’s medical professors and Jones, credits her place at Yale in part to Jones. Lyme disease had affected her processing and auditory abilities, but after five years with Jones, she graduated valedictorian of her high school.

“I’m immensely grateful for Dr. Jones, and the role he’s had in my life,” she told the News. “But I do feel like I shouldn’t use my name because I’ve heard some of my professors speak against chronic Lyme and those who treat it.”

LEGAL TROUBLES

While it started in academia, the controversy surrounding Jones’ practice has spread into the legal system.

Jones has been disciplined twice for diagnosing a patient without examining him in person as well as for keeping faulty records. Both complaints were filed by fathers of Jones’ patients, who were in custody battles for their children, Jones’ attorney Elliot Pollack said. The fathers claimed that Jones’ treatment was supporting their ex-spouse’s Münchausen syndrome, a psychiatric disorder in which a patient feigns illness in order to receive treatment from doctors, Pollack said.

Jones claims that due to a six-month waiting list, he will prescribe a patient antibiotics after hearing their symptoms. As for his record keeping, Jones claims that his staff of three nurses can only do so much in such a busy office.

But Shapiro said it is very dangerous to treat a patient without proper evaluation, especially over a long period of time with drugs that have significant side effects.

In addition to the fines he has received, Jones has to pay for a special investigator to review his files once a month for four years. Jones estimates this will cost him $2,000 to $10,000 per month.

“It makes you wonder, ‘When’s the last time this Board disciplined someone for successful patient outcomes?’” Pollack said.

Jones claims that he received such harsh punishment because his treatment contradicts the views of many in the medical community, originated by Steere and continued by others like Shapiro.

The legal race continues, but it may be the race against time that is most dire.

“I’m 82. They’re looking for bankruptcy or death or both,” Jones said.

“But I’m still practicing,” he added, smiling.

Well written article.

2011-04-05T14:39:00.000-05:00

Barbara Taormina

Story Created: Mar 30, 2011 at 6:13 PM EDT

Story Updated: Mar 30, 2011 at 6:15 PM EDT

Ben Secino likes inventing stuff. He’s been thinking lately about a teddy bear that warms up and comforts kids who are fussy or can’t sleep. For adults, he’s come up with a hovering no-hands flashlight, a kind of Star Wars-like ultra-handy night gadget. People will be banging down the doors of Home Depot to get one.

Ben is also thinking about designing video games, the kind with stories, strategies, intricate puzzles and great graphics. And when you talk to him you have no doubt he’ll do all of that, and more.

But three years ago, when he was in the fourth grade, nothing was certain about Ben’s future.

“It was awful,” recalls his mom, Diane Secino. “His eyes would jitter, and he was having a lot of trouble in school. By late January, he was having horrifying migraine headaches and neurological problems.”
Secino kept hoping for the best as she watched the worst unfold.

“By the end of March, he couldn’t count to three,” she says. “He kept falling down, he couldn’t walk, he couldn’t stand light and the pain was beyond measure.”

The Secinos went from doctor to doctor to doctor, but no one had any explanations, or any cures.

“They kept telling us it was psychiatric,” says Senico.

During one of Ben’s many doctors’ appointments, an acquaintance mentioned Shelia Statlander, a clinical psychologist in Framingham who had cataloged a long list of problems associated with Lyme disease. The Secinos learned that Statlander had attributed almost every detail of her Ben’s decline—the muscle weakness, the loss of language, the overwhelming fatigue—to late-stage Lyme disease.

Since 1975, Lyme disease has been steamrolling through New England leaving a trail of very sick people in its wake. The disease is spread by tiny deer ticks that latch on to unsuspecting human hosts. The ticks dig their jaws into a patch of skin, and as they sip out a blood meal they leave behind a type of bacteria called borrelia burgdorferi, which causes Lyme disease.

People with a fresh case of Lyme disease often come down with a fever, nausea, chills, aches, and in some cases, a distinctive red bull’s-eye rash. Most patients who are diagnosed early take a round of antibiotics and recover. In a perfect world, Lyme disease would be caught and cured every time. But nothing is perfect, and many cases of Lyme disease go undetected.

In cases like Ben’s, a set of far more serious symptoms emerges years after the initial tick bite and infection. Other people experience the first wave of acute symptoms and then, because they were undiagnosed, misdiagnosed or inadequately treated, a gradual wave of debilitating problems such as extreme fatigue, memory loss, intense joint pain and depression begin to take hold. Those patients suffer from chronic Lyme disease, an illness that the established medical community says is not backed up by any scientific evidence.

Many doctors say chronic Lyme disease doesn’t exist, and therefore, it can’t be treated—many, but not all. Ben starting seeing one of a small network of doctors who treat patients with chronic and advanced cases Lyme disease with an aggressive, long-term course of antibiotics. Healing from Lyme disease is a long and hard haul, but the pieces of Ben’s life are starting to fall back into place.

Other people with chronic Lyme disease are fighting their way back to health with different combinations of medications, alternative therapies, diets and exercise. Lyme disease is a complicated illness and patients respond in individual ways to both the bacteria that causes it, and the treatments that cure it.

But what Lyme disease patients, or Lymies, as they sometimes call themselves, do share is a sense that traditional medicine has abandoned them. And as a result, they have been pushed to the forefront of an emerging trend that has patients turning to one another for the help and support that they have been unable to find at doctors’ offices and hospitals.

People with chronic Lyme disease are talking, networking, blogging, emailing and sharing their experiences with the disease, doctors and treatments. They are swapping papers on the latest scientific research and debating ideas on the politics of medicine and health care. Thousands of patients all with their own observations and ideas are taking charge of their disease and many are finding ways to heal themselves.

Read the rest HERE.

Help Support Catherine!

2011-04-04T22:59:00.000-05:00

Help Support Life Past Lyme | GiveForward.com - Fundraising Made Simple

Healing Lyme without Antibiotics: Dr Klinghardt’s recent seminar

2011-04-04T09:30:00.000-05:00

Read Article HERE.

Lyme Angels

2011-04-03T23:25:00.002-05:00

Brenda Nelson lost her life due to lyme. Visit her page HERE. You can leave a comment also.

Elisabeth Marie Winterfeld also lost her life and you can see her page HERE.

Take a moment and read about these amazing women, and pray for their families. This very well could be me one day, and that is why I work so hard to raise awareness and help others who are suffering.

Amen!

2011-03-31T14:24:00.000-05:00

Bone marrow transplant a success - CharlotteObserver.com

My lyme doctor's daughter is recovering! Although there are MANY risks still ahead, things are looking good. YAY!

Ally Hilfiger

2011-03-30T18:07:00.003-05:00

Hilfiger's experience with Lyme far from fashionable

Lisa Chamoff, Staff Writer

Published 09:50 p.m., Monday, March 28, 2011

Ally Hilfiger may have a surname synonymous with fun and youthful style, but for years the part-time Greenwich resident struggled with pain that left her feeling far older than she was.

While growing up, the now 26-year-old daughter of fashion designer Tommy Hilfiger went to several doctors, who diagnosed her with everything from arthritis to growing pains. Though Hilfiger was bitten by a tick at age 7, the insect tested negative for Lyme disease, as did later tests doctors performed on her. Some test results were "borderline positive," she said.

The pain, Hilfiger recalls, was "excruciating," and often left her sitting in the bathtub for hours or walking with a cane. She also had flu-like symptoms and trouble sleeping.

"I couldn't put lotion on my legs because it felt like I was being beaten with a baseball bat," Hilfiger said during a recent phone interview. "I was like an 80-year-old woman."

Finally, when she was 19, Hilfiger saw a psychologist who was familiar with Lyme disease, and recognized the symptoms in Hilfiger. She referred Hilfiger to a doctor in Danbury, who diagnosed her with Lyme disease.

"This was like winning the lottery for me," Hilfiger said. "I was so relieved."

Hilfiger's experience with negative test results and misdiagnoses is not uncommon, said Diane Blanchard, co-president of Greenwich-based Time for Lyme. The nonprofit, which advocates for better research and treatment of the disease, will be honoring Hilfiger Saturday with the first-ever Star Light Award at its biannual gala at the Hilton Stamford Hotel.

Blanchard said she is hoping Hilfiger will help the organization by speaking out about how Lyme disease affects young people, especially since children under 12 are at greatest risk for contracting the tick-borne illness.

"I'm very excited about this because I think that young people, their plight is not understood, and Ally is a beautiful spokesperson in every way, and she can speak to the issues with great passion and understanding since she's experienced it," Blanchard said. "Young people have someone like Ally to relate to."

At the gala, the organization is also honoring Richard Gerstner, an IBM executive and venture capitalist who faced a long battle with Lyme, and Dr. Karen Newell, who is conducting research into immune response to the disease.

Blanchard said one problem stems from the way patients are tested for Lyme disease. The test for Lyme, which looks for the presence of the antibody, not the bacteria, is unreliable, she said. Over the past decade, Time for Lyme has awarded millions of dollars in research grants, hoping scientists can develop better tests and treatment for the disease.

"Time for Lyme is working very hard to support this kind of research to find that gold standard diagnostic test and fund research that can help treat everyone," Blanchard said.

After she was diagnosed, Hilfiger went on and off antibiotics for several years, going through periods of ups and downs.

"After each round I would feel so much better, and I would be so excited to be able to live life normally" said Hilfiger, who has had her paintings exhibited, and launched a clothing line called NAHM last October. "Then I would work myself into a frenzy, do a bunch of art shows ... working myself into the ground. Every doctor said this disease is treatable but not curable. Sometimes it can be in remission for years on end. That really scared me because the discipline, the consistency of antibiotics are so intense. It's like having a really horrible flu and like you went snowboarding and fell a bunch of times."

Hilfiger, who took her last round of antibiotics a little more than a year ago, said she has also taken homeopathic remedies and has tried to eat healthy foods.

"Now that I'm well enough and I feel strong enough, I'm definitely going to be the voice and face of Time for Lyme and an advocate for chronic Lyme disease and the fact that people do need long-term antibiotic treatment," Hilfiger said. "A lot of people don't understand what it feels like and they don't believe it. I'm a pretty tough cookie and I don't like complaining. It took a lot for me to say, `I'm in pain.' "

Hilfiger started her work with Time for Lyme by arranging a few auction items for Saturday's gala, including VIP tickets and backstage passes to a Tommy Hilfiger fashion show, and tickets to the next Victoria's Secret Fashion Show and after-party. She eventually hopes to start an offshoot of the group for young people, though mainly she would like to talk with and support fellow patients.

"It's been a challenging road," Hilfiger said, "and I think what got me out of bed some days and kept me fighting ... was so I could help people one day."

Time for Lyme's biannual gala, "Illusions of Lyme," will be held at 6 p.m. Saturday at the Hilton Stamford Hotel, 1 First Stamford Place. For tickets or more information, call 646-502-9374 or visit www.timeforlyme.org.

Lyme in the News - Famous Person

2011-03-28T13:25:00.001-05:00

Read Article Here:

Diane Kruger | Kruger's Worries For Sick Brother | Contactmusic

Update - my lab results

2011-03-28T11:27:00.002-05:00

I'm supposed to be getting my labs done twice a month, but I only manage to get them done about every 6 months. yikes. My nurse is not to happy with me.

So, I managed to get them done about 3 weeks ago. She called today with my results.

Sounds like even though my symptoms are minimal, Lyme is still doing a number on my body.

WBC is low: 2.7 (which explains why I continue to catch every bug under the sun)

Vit. D level: extremely low. Have to start on weekly pills.

Calcium: low. Have to start asap.

Iron: low. Have to start on liquid iron.

DHEA: low, Have to start on daily pills.

C4A: High. This means the disease is still unloading tons of toxins into my bloodstream. Have to start Deplin and Vit. B12 asap.

Ugh. All this costs MONEY. And time, and it is so annoying taking more and more meds.

I really hate this disease. I miss my carefree days where I never thought about pills and antibiotics and I could just be a mom and wife and do normal things.

But I am VERY thankful that my body is responding to antibiotics, cause I have many lyme friends that are not as fortunate.

God, please continue to heal my body, and I pray for a blanket of relief over all my lyme friends who are suffering today.

John William Davis

2011-03-28T07:58:00.001-05:00

Another Lyme Angel....Read Obituary HERE.

Lyme in the news

2011-03-26T10:20:00.001-05:00

Article of an 11 year old fighting tick borne illnesses. Read HERE.

Vote for the Lyme Car Awareness Design!!!

2011-03-23T09:03:00.000-05:00

Vote HERE.

Lyme toxins cause most of your symptoms.

2011-03-21T11:43:00.002-05:00

Read article HERE.

People with Lyme Disease share their stories in Roanoke - wdbj7.com

2011-03-17T22:13:00.002-05:00

People with Lyme Disease share their stories in Roanoke - wdbj7.com

Click the above to see a newsclip.

Mandy

2011-03-09T22:52:00.002-06:00

Since I am leaving for a week out of town, I thought I would leave everyone on a cheerful note. This picture above is Mandy, from the documentary, Under Our Skin. And you can read an update she wrote HERE. It gives me such hope to read stories like hers, and how far she has come. No one will ever know the true hell she went through, but we did get to see a glimpse of it in the film. And if she can get better, then ANYONE can!!!

I wish you all a wonderful week!

Update on me!

2011-03-07T21:46:00.002-06:00

Well, I've had some symptoms return. Mainly numbness in my left side of my face and throat, heart palpitations and minor breathing difficulties.

I'm not sure if I'm having a babesia relapse or not. I'll just have to see if my symptoms increase.

These symptoms have returned during treatment and off treatment so I'm pretty sure it's not a herx. My memory is still VERY impaired as is my thinking ability. The fatigue has gotten better almost to the point where I might try working out again.

Overall, still doing awesome considering where I was. No pain and no nervous system symptoms. Whoo hooo!

Transmission

2011-03-03T10:02:00.001-06:00

The Pain of Bartonella - Health Key

This article is worth reading (click on the title). It is further evidence that tick-borne illnesses CAN BE transmitted not only to children from an infected mother, but also to a spouse. SCARY, I know. But it doesn't surprise me. I've heard one too many personal stories where this is true, so it doesn't surprise me. But I get excited when science is finally catching up to what the victims have known for a loooong time. Cause if we can prove it scientifically, then doctors have to take us seriously. And then maybe, we will get funding towards better research and answers to these complicated diseases. At least, I hope.

Lyme in the news

2011-03-02T10:42:00.002-06:00

This article below talks about how many doctors won't treat lyme patients even if their lucky enough to have the bulls-eye rash. Click below.

Confidence in diagnosis is the issue

Lyme Disease - Turn the Corner Foundation

2011-02-25T16:41:00.001-06:00

It's organizations like this that give me hope!!!!!

video

2011-02-22T23:56:00.002-06:00

A video about how lyme disease causes Rage and Psychosis. It's nice to see Dr. Jones in it! Watch it HERE.

The Danger's of Co-infections

2011-02-22T08:42:00.004-06:00

I found a great article in Self Magazine about the dangers of Lyme Disease and co-infections. It specifically focuses on Babesiosis, a parasite of the red blood cells. You can read it HERE.

The only line I disagree with is they say Lyme is not deadly. Well, it is, and most of the comments at the end of the article agree with me on that point.

I have had Babesiosis for 10 years, and got deathly ill in 2009 when my Lyme decided to kick into high gear. I suffered severe air hunger, much like asthma attacks, where you feel like you are trying to breath through a coffee straw. It's hard for doctors to understand cause your 'stats' look fine. But my Lyme doctor told me that Air Hunger ( caused by BABS) actually is triggered in the brain, so your lungs aren't the ones causing the stress.

This article also talks about how Babesiosis can be very deadly, and can be passed on to a child from the infected mother. So, this is one more thing I need to be aware of in my three children. Not only lyme, but also an infection in their red blood cells. I also have ehrlichiosis, which can also be passed on. So, my children will need to be tested for ALL tick borne infections one day.

So, when most mom's worry about common colds or stomach bugs, I get to worry about my infectious diseases being passed on to my children. If only they would have known to treat me when I came to the doctor with my rash.

And you know what else is scary.....How many times I've donated blood in the last 10 years I've been infected!!!! Luckily, the answer is none. But this article talks about the dangers of infected people donated blood, and how local labs do NOT test for tick borne illnesses when they test donated blood.

Scary.

Some good news .... I've been off Babesia treatment for 3 months and haven't had a relapse yet. Only time will tell, but I'm hopeful that maybe I got rid of ONE infection!

Mommalyme Hope

Great video

Lyme In The News

Eye symptoms

Another Lyme Angel

Top 100 Stories of 2011 #90: Chronic Lyme Patients Validated

Is Lyme Disease Sexually Transmitted?

Babesiosis

TOUCHED BY LYME: Her son’s “nightmare of illness” led her to path of helping others heal from Lyme

Video

Lyme Angel

Happy Holidays!

Great Holiday Discount!

$29.95

I can see the stars!

Reflecting on how far I've come

Lyme in the News

Warrior: Josie Gaffney stays hopeful in the face of Lyme disease, arthritis

Published: Wednesday, November 16, 2011, 8:00 AM

Happy Halloween!

Update on me!

Looking for you!

Update on me!

I just hate bugs.

Friday's Winner!

Friday's Giveaway! ~last one.

Thursday's Winner!

Thursday Giveaway!

Wednesday winner!

Wednesday's Giveaway!

Tuesday's Winner!

How to leave a comment

Tuesday's Giveaway!

Winner for Monday!

Midnight Surprise!

Midnight secret giveaway....

Monday's Giveaway!

It's Giveaway Time!

Her story is very similar to mine....

My life is upside down.....literally.

Finally some good news...

Update

Lyme Angel

A family in Need

Senator pushing for Lyme Disease bill

Update on me!

North Carolina

Lyme in the News

I'm losing my mind - literally.

Lyme Angles

Update on Me!

2 more Lyme Angels

An amazing day!

7. What To Do When Your Friend Has An Invisible Illness - ME / MECFS / CFS

The Race is on!

Another Lyme Angel

Our tribute for Angela Quinn Hausman… Read full blog post Here.

Hey Texas patients!

Texas legislature passes Lyme bill recognizing long-term antibiotic treatment as option for persistent disease

Mayday.MOV

Melissa's blog

Congrats!!!!

Last Blog Giveaway for May!

MayDay Speach at Rally in Washington DC May 21st 2011

10 Tips From 10 Years Sick

Lyme Walk/Run Fundraiser

MAYDAY! Lyme March at the White House!

Symptom Update

And The Winners Are:

Stupid Blogger!

BLOG GIVEAWAY!

Controversy Comes to the Capitol

Time for Lyme 2011 Gala Honors Video

Car Magnets!

Paint May Lyme Green!

Lizzy Lyme

Lyme Angels

TOUCHED BY LYME

TOUCHED BY LYME: After “Rambo daughter” succumbs to Lyme, dad dedicates himself to teaching others

Leila's Blog