Tuesday, November 30, 2010

The Two Week Wait

My daughter got tested this morning to see if I gave her Lyme in utero. Now it's the dreaded two week wait for the results. I sure hope she doesn't have it but I guess at least I have some local Lyme friends that have kids with it and can shoot me in the right direction. Let's hope in two weeks I have good news and not bad!!!

Monday, November 29, 2010

PAIN and Epsom Salt Baths

I am in Pain!!! Hasn't been this bad for a while. The lyme seems to have decided to reside in my lower back, hips, legs and feet. The most painful are the hips and lower back, feels really deep and as if I can feel the hip socket moving as I walk or move around. It's pissed and telling me all about the toxicity in there!! Ice and heat work for a while but of course it comes back once the feeling in my skin comes back. Since I don't have a sauna in my house readily available I think it's time for an epsom salt bath to help with the toxins. Let's hope it helps!! Here is an article for those that would like to learn more about epsom salt--

Epsom Salt Baths
By admin | January 11, 2008
Epsom salt baths are a commonly used strategy by Lyme disease patients for symptom relief and as a strategy in a “detoxification” program to eliminate the supposed build up of toxins and pro-inflammatory mediators released as the Borrelia spirochetes and other coinfection microbes are destroyed.
Epsom salt is magnesium sulfate and is widely available in the United States and extremely cheap. It can be purchased at many chain grocery stores for $3-4 for a large milk carton-sized container. It is also available at almost any healthfood store or specialty food store such as Whole Foods.
The use of epsom and other mineral salts to treat disease is an ancient practice and the use of hot mineral springs for diseased patients is recorded throughout the history of medicine.
Before getting into the epsom bath, many Lyme patients do a dry skin brush to exfoliated the dead cells from the outermost layer of the epidermis. Skin brushes can be purchased at most health food stores or at select grocery stores such as Whole Foods for about $10. Alternately, some Lyme patients use dog brushes or human hair brushes to apply long, light strokes to the skin.
The epsom salt bath used by most Lyme patients is warm to hot water with 1-3 cups of epsom salts added. Patients usually soak for 5-30 minutes and then shower to remove the magnesium residue and the purported “toxins” that have been excreted by the skin.
Many Lyme patients think that the epsom salt bath works best with water that is filtered and recommend filters for the bathtub spigots that can be purchased at Lowe’s and like retailers.
Some Lyme patients report a sweating and flushing sensation when sitting in an epsom salt bath, as well as headaches from the vasodilation.
Because these baths are used for medicinal purposes, they should never be used unless under the direction of a physician.
Copyright 2008 LymeHealth.com

Saturday, November 27, 2010

Happy Thanksgiving

Happy Thanksgiving, a day late :-) Even though I get upset a lot about my recovery I am thankful for how far I have come in my 6 months of treatment. This thanksgiving was a little strange since I was gluten free and dairy free along with my daughter but I am very thankful that family tried their best to make accommodations for us! Makes things much easier and it's not an easy thing to do when they have to cook for so many! I am VERY thankful for all of my friends and family that matter so much to me and make a difference in my life. If it weren't for them, I wouldn't be here. It's so easy to get trapped in the "dark" side when you are battling such a horrible disease and you need others to help you through it all to make it! I am so very thankful that I have had people to help support me through the hard times, even if they just listen to me vent and cry. They are who matter, not stupid material things! People, love, family, friends, a roof over my head, food on the table, and heat to keep me warm! The simple things matter! I am thankful for the simple things in my life today!

Tuesday, November 23, 2010

Letter From Lyme Dad

I read this from a fellow blogger and thought it was a good one to share!

Letter From Lyme Dad
I got this letter from my good friend Jen. A father speaks from his heart about the remorse he has for doubting his daughter's iillness. But he studies and understands that she is really sick. I have never doubted my wife's symptoms, but I did doubt her self diagnosis of Lyme. I have some empathy for this guy.

Dear Family of a Lyme Disease patient,

I am writing this letter to all parents and family members who are witnessing their children, wife, son, father, aunt, uncle, cousin, etc. struggle with Lyme Disease.

I am one of you.

For more than 6 years my daughter has suffered through this ugly, dark disease.

She has experienced horrible migraines, severe joint & muscle pain, nausea, vomiting, extreme fatigue and loss of her ability to speak or think logically (these are just a few of her symptoms).

She has become unable to work. She has been forced to move back into our home at the age of 23 (she is now 29). She has virtually lost her 20's, one of the most productive and exciting time of her life.

We have taken her to every known medical specialist in southern California as well as three different General Practioners.

She has been diagnosed, at differing times, as having Chronic Fatigue Syndrome, Chronic Pain Syndrome, Fibromyalgia, Lupus, Psychosis, and MS (please notice that all of these are either syndromes or descriptions of symptoms; none of them are diseases).

For the first 4 years of her struggle, I was not a good parent, even though I thought I was.

My daughter didn't have any outward sign of her illness. She looked "normal". After many, many blood tests, MRIs, CAT Scans, x-rays, psychological tests; everything came back "normal".

I was, and sill am, one of the world's biggest cynics and skeptics (I'm originally from Missouri - so "Show-Me").

Surely if you are as sick as you say you are, there must be something that will show up in your blood tests or on x-rays.

You can't possibly be this ill and not have something tangible to show for your symptoms.

You're either just faking it or your lazy or it's psychosomatic or your trying avoid the real world.

Get off your lazy butt and get some exercise or get a real job or face up to life like the rest of us.

That's the way I approached her illness. It's time you took control of your illness and will yourself well.

I was so far off-base. It took an outstanding Lyme Literate Medical Doctor to show me the error in my approach with my daughter and to show me the reality of this disease.

My daughter and I have both suffered because of my ignorance (I'm not saying all of you are ignorant, I'm saying I was ignorant. To be ignorant simply means to be uninformed not stupid). I am still working to rebuild the closeness we had before Lyme.

Lyme Disease is real, the pain is real, the problem with logical thought is real, the lack of energy is real, etc., etc., etc.

If your child or family member has been diagnosed with Lyme Disease, they are just as sick, if not more, than someone who has a more "traditional" illness, like Lupus or Multiple Sclerosis or Cancer.

I've done all the study, I've been with my daughter at all of the appointments, I've watched the misery she's been through.

Hey they just can't help the way this disease treats them. It's not their fault.

We as family members need to be there to support them. They don't need our pity. They don't need our skepticism. They don't need our criticism.

They need our understanding.

If you as family members will take the time to study this disease, you'll see that it is real. The little buggers who have invaided their bodies are real and they are making our loved ones sick.

Please spend the time you currently spend trying to figure out why your loved one acts the way they do really studying the disease. There are volumes being written on the internet as well as new books being published everyday on this disease.

We can't possibly understand the way they feel, not unless we have the same bacteria in our bodies.

My daughter has a long way to go before she's back to where she was 6 years ago. She has a lot of work and pain to endure before she can get there.

She certainly doesn't need someone who claims to love her causing her any more pain than she has already.

Families. from one who has been in your shoes, please let them know you love them.

Let them know you're there to help them.

Let them know that there's no way you can possibly understand their pain, but that you wil try to understand their illness.

I think one of the most important things I've come to learn is that my daughter's disease may be God's way to teach me a lesson.

I'm not saying God gave my daughter Lyme Disease, but He may be using this disease to teach me how to love, how to be patient and how to be more understanding.

I wish you all good health and I hope that none of you will ever have to experience what our Lyme Disease loved ones are experiencing.




Monday, November 22, 2010

Lyme Disease Success Story

I am feeling pretty hopeless these days and need some success stories to gain some hope. Thought I would share this one-

Lyme Disease Success Story

My name is Perry Louis Fields. I’m a US Track and Field athlete and I compete in the 800m and 1600m (arguably the two hardest events in Track and Field.)

In 2003 I was just out of college training for the 2004 Olympics. It was a few months before I was going to Bolivia to train at altitude.

I was bitten by a deer tick at an outdoor festival called the Highland Games in North Carolina. Two days later I pulled the tick off the back of my head at the base of my neck.

Growing up in the country, I didn’t think it was such a big deal. After all I’ve been bitten by everything.

For a few weeks I had flu like symptoms and did not know about tick infections. I thought I had very bad PMS and a cold from running so hard.

After a few weeks it went away and I went to Bolivia.

I continued to train and run well for 2 years until the 2005 US Track and Field Championships, where I was expected to win. For a few weeks prior to the event I had considerable stress from a coaching change and moving from Tucson, AZ to Orlando FL all within a few days. Training was sporadic and I had days where I would throw up but it wasn’t anything I was eating. I felt slightly toxic.

On the day of the big race, nothing was abnormal. During my race, however, it was a different story. I was racing the 800m (a two lap all out sprint race). Coming through the first lap I was in the perfect position to make my move but noticed my arms and legs becoming cold and numb. I had never experienced anything like it before. It was a nightmare with all eyes on me.

I finished the race dead last and then went to throw up soon after (but again it was nothing I was eating).

My track season was trashed and I had no way of explaining what had happened.

I went home to see my parents for the first time in a while. While at home my mother noticed me scratching the back of my neck. She took a look and told me of the bull’s eye rash on the back of my neck.

I immediately knew what it was from and started researching everything I could about Lyme disease.

I figured I could knock it out with a course of antibiotics. I decided to see the best infectious disease doctor who specialized in Lyme disease in the southeast.

Sitting in a room full of AIDS patients and Lyme disease patients I realized the severity of the situation.

He ordered a series of costly tests as well as 4 types of high powered antibiotics, after I told him the story. * Later on I found out from another test that I could not detox sulfa drugs (antibiotics.)

Once the tests were received… I was positive for Lyme (I had the worst bands possible on my Western Blot test) and I had a co-infection.

The antibiotics did kill off some of the Lyme. My health deteriorated quickly while on antibiotics. I was as feeble as a 100 year old lady. For weeks I would stay in the bed. I couldn’t feed myself and I certainly couldn’t drive anywhere. I felt like toxic mush.

Every square inch of my body was in pain and while this went on for months, I couldn’t see the outcome being very positive.

His office called me one day saying that I could go back to running if I wanted and then later do another course of treatment. This made me realize that while they were treating people they really had no idea how bad their patients were feeling. I couldn’t run if I was being chased by the mob! How on earth would I go back to even jogging or walking in my condition? How on earth would I ever be normal again?

After declining further conventional treatment, for it took almost 8 months to get over what one course of antibiotics did, I later found out that one thing that was prescribed, which Lyme doctors do, is actually banned in the UK for killing people.

Thus I had to go with my gut on this and become my own expert at solving this puzzle. I later contacted another Lyme specialist and didn’t care for what he had to say either. One medical doctor I had to go see during an emergency visit one Saturday morning told me he didn’t think people could get Lyme in South Carolina? * Later I realized that my visit was due to a neurological manifestation of meningitis. I literally woke up and thought I snapped my neck. My neck became so stiff after a load pop and I couldn’t move my neck so I had to see a doctor immediately.

As months went by I had severe depression, or so I thought. To this day I don’t know if I had depression or if the Lyme bacteria was in my brain causing mental health issues (see Lyme Symptoms as this is a real phenomena.) Everyday I thought about how I could end my life because I didn’t really have a life anymore. I was a strong athlete reduced to this vegetable.

A few times I was close to telling my mother to commit me as I didn’t think I could control myself any longer. I thought I was going to hurt myself or someone else.

Even during these dark times there was this spark, deep down inside still glowing. I don’t know how, but it was. This tiny little spark was still there telling me that I would get through this.

Mentally I told myself to get over running completely. I just couldn’t deal with the misery of not being able to compete as an athlete again. It just hurt my chances of healing. So mentally I had to tell myself, on the surface, to move on and work on just getting back to a normal life. The goal was to live normally (but believe me deep down inside that little spark was still there and what would ultimately be the reason for my full recovery, finding all my answers to this Lyme riddle, and getting me back to training and competing.)

After I semi-recovered from the conventional route, I decided to go unconventional. I’ve long been a proponent of alternative health. After all I found out I was gluten intolerant and that I had a few food allergies from an Applied Kinesiologist (a type of alternative doctor.) No conventional doctor, I ever saw as a child said “it might be something you’re eating” when I went for so many visits about earaches, stomach aches, etc. As soon as I stopped eating certain foods I never had to go to the doctor again.

During these past 4 years I went on this enormous search to get the “cure.”

I did everything humanly possible (even to the point of experimentation on myself.)

I would not take “NO, we can’t help you” for an answer. I simply continued my quest.

The result is my doing something that was deemed close to impossible. I’m not only healthy…I’m healthier than I was before I was bitten. (No kidding!)

My training and racing proves that. I’m the fastest and strongest I’ve ever been; which is truly amazing! I still to this day have not found anyone with the success I’ve had.

Lance Armstrong did for cancer, what I hope to do for Lyme disease. I have sometimes told myself that I wish I had cancer rather then Lyme. Someone with terminal cancer may feel otherwise, but I’m truly upset that the research on this disease is so inconclusive. The treatment for it is inconclusive. It’s like nobody has had any experience with it at all, yet hundreds of thousands of people get it every year (I think that number is more like millions.)

There is no cure. There is no one good way to treat it.

So instead of saying “why me”…which I have to admit I did a few times, after this health quest of mine, I realized the answer to that question. I’m here to simply share my story, to give hope and help people answer their own health riddles. There are multiple ways to treat it and multiple steps you can take to treat it.

So there is hope with a disease that seems completely hopeless.

Thursday, November 18, 2010

Monday, November 15, 2010

Feeling ungrateful and upset

It's hard to feel thankful and grateful when you feel like crap! I am upset we can't have another biological child because I could pass the lyme on. I am upset that I feel like crap and it's hard to make it though the day sometimes. I am upset I am dizzy, and feel like I have a hangover many days when I didn't get to have any fun to cause the crappiness, I am upset I have become a homebody just to survive, I am upset that I have to bring my own food anywhere I go because I can't eat anything that is normal, I am upset we are majorly in debt because of all these stupid medical bills, I am upset that I cause major stress in my marriage and to my family, I am upset that on weekends all I want to do is cuddle up in my bed and sleep the time away, and most of all I am upset that I could have unknowingly passed lyme onto my 3 yr old daughter. She is getting tested in 2 days. Am I thankful for how far I have come, yes, but not today! I am just UPSET and ANGRY with life!

Monday, November 8, 2010

Focusing on being Thankful!

It's not easy to focus on the positive thing in your life when you feel like poo most of the time, but I am trying harder this month. I am thankful for-

  • A loving, caring, hard working husband that picks up the slack when I can't keep up
  • Caring and helpful friends and family
  • Forrest my pet piggie, he is so loving and knows to come cuddle with me when I don't feel well. Animals are so comforting!
  • A local LLMD. So many people have to travel a very long way to see their doc.
  • A house, a job, and two vehicles. Even if one is pooping out on us
  • A warm house, food, and lot's of daycare kids to give me hugs when I need extra ones!
And just because Forrest is so cute, you get another picture of him being loving!

Thursday, November 4, 2010

Little Lyme Boys Healing Journey #1

A Lyme friend of mine and her whole family-herself, her 2 boys and husband all have lyme. Here is a video the boys put together talking about how they got lyme. They are so darn cute, and smart! They obviously didn't list all the facts but you get the idea, enjoy!

“Everyone knows someone with Lyme Disease"

This is an article about a Lymie friend of mine, take a minute to read! They had a great turn out at their benefit!