Tuesday, December 28, 2010

Exhaustion

I have been totally exhausted lately. I have alway been one to like sleep, before having a baby I could sleep until noon and felt great. I was always a night owl and would stay up late and sleep late, on the weekends at least. But if I only got 6 or 7 hours of sleep I could function just fine. Now I NEED sleep and lots of it. This weekend I took a few extra days off of work for the holidays and I slept A LOT! I can sleep for 10 hours solid at night and then get up and eat breakfast, take some pills and be ready to sleep again for a few hours. Who knew 10 hours of sleep wouldn't be enough. It just seems crazy that I can get SO much sleep and still feel totally drained. I ran errands yesterday with my daughter and after going a couple places we stopped at my parents to eat lunch and I could hardly keep my eyes open. I was going to go home so we both could take a nap but I couldn't peel myself off the couch. So we stayed there and took a long nap! My poor body is fighting hard and is totally drained. I wonder when I will get a normal amount of energy back??

Saturday, December 25, 2010

Lyme Disease

This is a good video about how many of us Lyme people feel. Watch, educate yourself and support a loved one with Lyme. Its rough, we need support.

Friday, December 24, 2010

Merry Christmas!

Merry Christmas! All I want this year is health and extra cuddles from my little one and hubby! My wish for everyone is a healthy and happy new year!!

Tuesday, December 21, 2010

Upsetting News

My 3 yr old got tested 3 weeks ago to see if she has Lyme, we finally got the results last night. Unfortunately she does have Lyme Disease :-( Which means I unknowingly gave it to her in utero. Looking back I think I have had it 9 years now. I am in a fog, I don't know what to think, I am numb but very upset at the same time. How can my innocent baby have such a terrible disease and now has quiet the fight ahead of her. It's not fair! She also has MCAD a metabolic disorder which is going to make things so much more complicated. If I feel like hell and don't want to eat, I don't! With her and her MCAD she HAS to eat or she will be in the hospital for her D10 IV. I foresee a lot of hospital stays in our future. All I can say is it sucks, and it's not fair she has to suffer.

Monday, December 20, 2010

Just Breathe

Having trouble breathing tonight and not a fan! Its a scary feeling when you cant get enough air and have air hunger. My arms are feeling funny too, kind of numb like and my face is numb and tingly. If its not anxiety it sure the hell causes anxiety. I need air!!!!! And of course the snow storm causes more anxiety because it would take flippin forever to get to a hospital and my hubby is stuck in horrendous traffic. Come on air, fill my lungs!

Tuesday, December 14, 2010

Learning about Lyme Disease

My 3yr old was asking me about Lyme Disease so I thought I would video tape her talking about it. I missed some of her questions but thought the video was cute!

Thursday, December 9, 2010

Holy Detox Batman!

I was going to bed but wanted to post what just happened. I am so very toxic right now, tons of die off happening and I can feel the toxicity in my body and neurologically. I NEED to get it out! A lot of people detox doing sauna's, epsom salt baths, charcoal, coffee enemas, etc. I decided to try an epsom salt bath tonight since it was easy access. I have taken them before but really cant tell much of a difference. Tonight I could! A few minutes into the bath my feet really started to hurt and ache and then it traveled up my legs. It was pretty painful and really crampy feeling. Then something very strange happened, I could actually feel the toxins leaving my feet! Sounds like a bunch of B.S., but I could feel it leaving my body, how strange is that?! I then started to feel weak and extremely tired and a little off kilter. I am having a hard time typing this because I am SO drained now. I guess it proves how toxic I am right now! Off to bed I go!

I was definitely mistaken!!!!

Boy was I wrong about Lyme Disease!! I have been tested two times through the ELISA Lyme testing with a million other tests over the period of 3 years and they ALWAYS came back negative, always!! A friend of a friend had just been diagnosed with Lyme and had a lot of the same symptoms. A Lot of her story sounded like mine. She was telling me about how the ELISA test is horrible and hardly ever shows if someone really does have Lyme. And sometimes even when you do have Lyme it still shows up negative. If you want more reliable testing done you go through the IGENEX Lab in CA. They only deal with Lyme testing and do the western blot test. So I did just that! I didn't think it would show anything, after all nothing else had so why would this be any different. I prayed, and prayed, and prayed I had Lyme. By the way-I don't pray so that proves how desperate I was for an answer! I just wanted someone to finally tell me what was wrong with me so I could treat it and move on with my life. As if it would be that easy!! HA! If I only knew! Of course I got the "call" and yes indeed I do have Lyme. Thank you lord, now I can treat it and move on! Or course it hasn't been that easy as a lot of you know. I figured I would have a few months of treatment, feel great and be back to myself again. Its been 7 months now, and will be at least 6 more, I am sure much longer. I have been making great progress but its defiantly not easy to "cure" and heal from. It could be years, I could have it for life, or it could come and go and be chronic. I didn't expect that at all! I knew absolutely nothing about Lyme other than I fit an awful lot on the list of symptoms. My goal is to get the word out, inform others and hope they catch it right away so they can kill those baster bugs and be happy healthy people. The key is catching it right away, unfortunately most don't and then it turns into this, hell on earth! I am very thankful to have a good support system and have learned to put myself out there so I can learn from other Lymies and get support from them. I have great Lyme friends that I love dearly, they understand so much more than others could ever understand. The biggest thing I have learned-you take your health in your own hands and don't stop fighting until you have an answer!!!!

Sunday, December 5, 2010

It's Been Rough!

Up and down and up and down and up and down! All you Lymies know how it is. So frustrating! You have a good hour and think yay, it's getting better, I can tackle things. And then BAM, an hour later you are SICK and feel like you are going to die! This weekend has been rough, SO lethargic! I guess when people keep telling you that you don't look so good or you look sick you know it's not good! I woke up at 10:00 (thank you hubby for getting up with 3 yr old), ate, felt pretty good so daughter and I gave our sick piggie a bath to help him feel better, ate lunch, still feeling good and then BAM drugs kick in. Oh so sick, yucky! Now bed bound again, praying I feel better tomorrow for the work week with the daycare kids! This vicious cycle is getting real OLD!!!!

Wednesday, December 1, 2010

Dr. Joe Jemsek "Speaks the Truth" Speech

Great video. Check it out and pass it along to others. We need to educate!!!!


The psychological effects of Lyme disease

I know many people that are effected by Lyme on so many levels. I thought this was a good article and wanted to share--


The psychological effects of Lyme disease

Can a tick bite drive you crazy?

Doctors warn that Lyme disease may cause personality changes

By Valerie Andrews
January 2004

A walk in the woods nearly cost Mike M. his sanity. After receiving multiple tick bites, Mike broke out in an angry rash and his joints began to ache. In the next few months, his behavior grew increasingly bizarre. He was no longer able to read or concentrate, and became so anxious he couldn’t leave the house. Eventually, Mike was treated for chronic Lyme disease, an illness that can play havoc with the mind.

Since its discovery in 1975, Lyme disease has reached epidemic proportion in the United States. While the Centers for Disease Control reports 19,000 cases of this tick-borne illness in 2002, the agency estimates that the actual number may be tenfold higher: 190,000—that’s four times the rate of new HIV infections.

“Lyme disease is a major problem yet, tragically, many people fail to receive the proper treatment,” says Bernard Raxlen, MD, a Greenwich, CT, psychiatrist and secretary of the International Lyme and Associated Diseases Society (ILADS), a medical organization dedicated to ongoing research and increasing public awareness of this devastating illness.

Lyme often begins with flu-like symptoms, headaches, fatigue, swelling of the joints, muscle pain and gastrointestinal distress. Most physicians have been taught to look for evidence of a tick bite and a red bull’s-eye rash, yet fewer than half of all Lyme patients recall being bitten or develop tell-tale skin eruptions. As a result many are misdiagnosed with other disabling illnesses such as chronic fatigue, fibromyalgia, or MS.

As Lyme disease progresses, it can attack the nervous system, producing learning disabilities, mood swings, anxiety and depression, panic attacks, obsessive behavior, sudden rages and other psychiatric diagnoses. Says Raxlen, “When this happens, we’re looking at a completely different syndrome and one that is harder to cure.”

A recent European study shows that psychiatric in-patients are nearly twice as likely as the average population to test positive for Lyme, and the National Institutes of Health are currently sponsoring a major study of neuropsychiatric Lyme disease in an effort to illuminate specific changes in the brain.

Psychiatric Lyme has been linked with virtually every psychiatric diagnosis and can affect people of all ages and from every walk of life. A former honor roll student is diagnosed with Attention Deficit Disorder and pegged as a “problem kid” because he can’t sit still in class. A lawyer has to close her practice because she can’t concentrate and suffers from anxiety attacks. A young mother is so sensitive to noise that she can no longer tolerate her baby’s cry and is afraid that she will harm her child. A retired salesman develops a compulsive habit of writing all over everything—he covers everything from the tablecloth to matchbooks with meaningless scribbles.

Family members are baffled by these transformations; counselors and physicians are consulted, often to no avail. While these individuals may also have migrating muscles pain, headaches and problems with their joints—common signs of Lyme—these symptoms are rarely picked up in a mental health evaluation. And when traditional psychiatric medication fails to produce a cure, the patient grows more desperate.

The Search for a Diagnosis

“Most people come to see me because they’ve got something wrong that nobody else can figure out,” says Debra Solomon, MD, a psychiatrist who practices in North Kingston, RI. Fifteen years ago Solomon was confronted with a medical mystery. More and more patients were coming in with the same group of symptoms—fatigue, headaches, migrating joint and muscle pain, accompanied by anxiety, depression, and memory problems. When one of her patients turned out to have Lyme disease, she tested the others, and found that nearly all were positive.

Recent studies show that certain areas of Rhode Island have the highest tick population in the world. Today many of Solomon’s patients come from the island Jamestown, a small farming community where ticks are abundant. Among her cases are:

A college student in her early twenties who started hearing voices. “She came from a good family and had no previous emotional problems,” says Solomon.
A businesswoman who suddenly became manic-depressive. “In periods of high energy, she wouldn’t sleep and felt all-powerful. She’d start a new business and begin spending lots of money, then she’d crash.”
A high school athlete had to drop basketball because he didn’t have the stamina and couldn’t get through his classes without falling sleep. “The teachers accused him of not paying attention, but he didn’t have the concentration to do the work.”
A 40-year-old book editor who was gaining weight and getting lame in her left leg. “She couldn’t think or process information, and was worried about her job.”
“Lyme affects nearly every person on this island,” says Solomon, “yet each person responds to it in very different ways.”

How can a physician tell the difference between true mental illness and symptoms linked to Lyme disease? With Lyme disease, a patient’s psychiatric symptoms don’t quite fit the textbook definition. There is usually no previous history of psychiatric illness. Symptoms often come in cycles. Patients usually do not respond well to psychiatric medication. And they often describe their problems in very physical terms.

Lyme patients often say, “There’s a wall in my brain and I can’t seem to move my thoughts from the back to the front.” “This arises from encephalopathy, an inflammation in the brain that affects cognitive function,” Solomon explains.

Symptoms often worsen as the Lyme bacteria grow active and begin to reproduce. At the same time, a patient may experience physical symptoms, such as fatigue, muscle pain or headaches. Flare-ups are often triggered by stress, as in the case of Bob C. who ran a shipping department for a manufacturing company. Bob had dozens of people answering to him, but Lyme disease made him anxious and unable to concentrate. Because he couldn’t think, he lost his job, and his symptoms grew more intense.

Family problems, economic changes, job loss, surgery, an auto accident, or a bad case of the flu, can send Lyme patients into a sudden tailspin. Along with antibiotics, these people need to rest—and do anything they can to lessen their emotional load.

The catch-22 is that chronic Lyme disease makes it hard to think and perform one’s daily tasks. This inevitably causes financial hardship and puts a strain on family relationships.

Effects of Lyme Disease on Marriages

“My patients come in to talk about their marital problems and are surprised to learn that they are linked to an organic illness,” says Virginia Sherr, MD, a psychiatrist who practices in eastern Pennsylvania, another region known for its high rate of tick-borne infections. Ninety percent of Sherr’s patients test positive for Lyme disease. She then has the job of describing to them just how this condition can affect the mind and the emotions.

Lyme disease can cause increasing irritability and dramatic flares of anger, says Sherr.

“Suddenly you hear bone-cutting verbal assaults from people who are usually more measured and benign. They may have been harboring some small grievance for years, then that hot spot comes to life and they spew out all this venom. Such outbursts cause lasting wounds.”

While some Lyme patients become verbally abusive, others lose confidence and withdraw from social situations. Mary L. tried to explain to her husband that she no longer had the stamina for dinner parties and that she dreaded going out. The husband felt that she was faking it. “Mary’s husband and her internist, who knew little about Lyme disease, ganged up on her,” Sherr reports. “The doctor said, ‘You used to be so full of life, but you’ve less yourself go completely. You’re not even trying!’”

“Physicians who don’t know that Lyme causes personality changes may be dismissive or sharply critical of the patient. Our goal should be to educate couples and help them cope.”

Sherr cites one devoted couple who are both infected with Lyme disease. “The man has major cognitive problems and the wife helps him with his memory. She has bouts of extreme impatience, yet he gently guides her through them.” They have begun to weather the storm together—with the help of antibiotics and marriage counseling.

Lyme Disease and Domestic Violence

“Lyme disease often strikes an entire families and the result is a higher incidence of divorce, family dysfunction, and domestic violence,” says Robert Bransfield, MD, a psychiatrist in Red Bank, New Jersey. “Tempers flare and you see increasing conflict.”

“Lyme disease is like an injury of the brain,” says Bransfield. “Patient are less able to think things through, and tend to act impulsively. A mother may suddenly lash out at her child and a husband may lose control and abuse his wife. “We underestimate the role of infectious disease in domestic violence,” he adds.

AN OUNCE OF PREVENTION

Lyme disease is a hazard for anyone who spends time outdoors: avid hikers, gardeners, campers, cycles, runner, fishermen and hunters. Yet house-bound people can also pick up Lyme disease from the family pet. Lyme disease has been reported in every state in the nation, and can easily be picked up by those vacationers, especially those traveling to endemic areas along the East coast, Texas, certain portions of the Midwest, and Northern California.

In the spring, the biggest danger comes from nymphal ticks the size of a poppyseed and which are hard to detect on skin or clothing. By summer the ticks have grown to the size of a sesame seed. It’s best to wear long sleeves and tuck pants into your socks or high top footwear. Avoid high grasses and heavily wooded areas. Spray exposed arms and legs with DEET. Inspect yourself and your family for ticks. Use a tick comb on cats and dogs.

If you are bitten by a tick, see a physician knowledgeable about Lyme disease and get tested immediately. ILADS recommends using a laboratory that specialize in Lyme disease, such as IGeneX, in Palo Alto, California or IDL in Mt. Laurel, New Jersey.

To learn more about Lyme disease and to find a physician in your area, go to the ILADS’ website at www.ilads.org. Other helpful sources include the Lyme Disease Association (www.lymediseaseassociation.org) and the Lyme Disease Network (www.Lymenet.org)

An aggressive response is more likely if, in addition to Lyme disease, a patient has another tick-borne infection called Babesia. More than one infection can be transmitted by the same tick, and when Babesia is added to Lyme, this may make the patient more aggressive. “It’s like putting a match to gasoline,” Bransfield says.

Bransfield has testified in court on behalf of such patients who have been accused of everything from assault to murder. (In one instance, a patient killed his partner, killed the family pet, then killed himself.)

People with Lyme disease alone usually don’t go to these extremes. However, they may be irritable and prone to sudden rages. Bransfield says young people are the most likely to act out. “I’ve seen so many straight-A kids whose grades suddenly start to slip. Then they rebel against the family and start fighting with their peers.” They can also turn their rage against themselves. “I’m often on the phone with a teen in a state of crisis,” says Bransfield, “Feeling suicidal comes in waves and these reactions are very hard to predict. However, these kids generally improve after being treated with antibiotics.”

Schools are becoming more enlightened about the problems caused by tick-borne diseases, Raxlen notes. In Newtown, CT, for example, teachers are asked to report any sudden dips in grades or unusual behavior that may be linked to Lyme disease. And many make special arrangements for at-home tutoring while the student convalesces.

Losing Control of Life

When Lyme disease goes undiagnosed—or isn’t treated long enough—it can bankrupt businesses and destroy whole careers.

A CEO of an insurance company was diagnosed with Lyme disease and given antibiotics—but he didn’t take them long enough. Months later, his symptoms returned with a vengeance. He had ghoulish nightmares and woke up drenched. At work, he felt anxious and couldn’t concentrate. Eventually he forgot everything he’d learned about insurance. When he neglected to send in a disability payment on his own policy, the company denied his claim. “This man lost tens of thousands of dollars that would have helped him through his illness,” say Raxlen. “In the end, he had to sell his building and disband his business.”

People with Lyme disease often have trouble keeping up with ordinary tasks—one Connecticut housewife walked into the library, dumped her dry cleaning on the counter, and waited with increasing irritation for an attendant to help her. Finally a friend walked up and asked, “Don’t you know where you are?”

Lyme disease can also affect the part of the brain that deals with signs and symbols—making it hard to read maps or drive from place to place. A real estate agent with Lyme disease stopped at a traffic light. When the signal turned green she didn’t move. An angry motorist yelled, “What’s the matter with you. Why can’t you go on the green?” The woman replied, “I’ve forgotten what green means.”

“Lyme produces a microedema, or swelling in the brain,” says Raxlen. “This affects your ability to process information. It’s like finding out that there’s LSD in the punch, and you’re not sure what’s going to happen next or if you’re going to be in control of your own thoughts.”

ILADS physicians say these symptoms can be alleviated or reversed with antibiotics, but stress that Lyme disease must be diagnosed early and treated right away.

Treating Lyme Disease

Most doctors prescribe three to four weeks of antibiotics for initial cases of Lyme disease. Yet according to the ILADS, this is not enough. The Lyme bacteria has a “cloaking device” that enables it to hide in the cells and body tissues. If it’s not completely eradicated, symptoms will recur and with great intensity. To avoid relapses, ILADS recommended six to eight weeks of antibiotics.

When Lyme disease moves into a chronic stage, it’s more likely to lead to neurological or psychiatric conditions. Chronic Lyme patients are harder to cure and may need to take antibiotics—orally or intravenously—for months as a time. In this case, ILADS recommends continuing treatment for at least six to eight weeks after all symptoms are resolved.

“Lyme disease is often misdiagnosed and it’s costing our healthcare system untold millions of dollars,” says Raxlen. “No one is spared, neither young nor old and each individual can display a puzzling array of symptoms. This illness can have a wide-ranging affects on marriages, families and jobs.”

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!

MONDAY, FEBRUARY 22, 2010
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.

Sincerely,

LymeDad


http://brewfunk.blogspot.com/2010/02/letter-from-lyme-dad.html

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!

Tuesday, October 19, 2010

The faces of Lyme Disease

It always amazes me how different you can feel from day to day when you have Lyme. Two days ago I felt awesome, today not so much. Pretty much feel like I am knocking on deaths door. Started new meds and they are kicking my butt!!

Couple days ago I felt awesome and was having fun with my daughter



Today-terrible

Monday, October 18, 2010

Traveling

Most of the time the car doesn't agree with me at all, especially long trips! I am excited to report that I was able to travel 2 hours this weekend to visit some friends! I felt great! It's so nice to feel so much better sometimes! Today I started a new med so I don't feel well but hope it won't last long and I can start to visit more friends that aren't with 15 minutes of my house!!

Wednesday, October 13, 2010

New treatments

I have stopped 4 of my meds now and started 3, my 4th will be in a week. So far so good! Besides some GI issues and headaches I feel great! I am totally drained but I think that is due to a huge lack of sleep since my daughter was in the hospital for 4 days! It's hard to sleep there and then add stress and you can't sleep! Anyways, I am so happy I am feeling so much better!!!!! It's nice to spend more time with people and get through the day with out feeling like I got hit by a bus or wish I would so it would all end. Yay for good days!!

Wednesday, September 29, 2010

Drug Vacation!

Had my Lyme doc visit today. It was pretty clear that my current protocol was not working this month. I have been sick the entire month with not much relief. She decided to stop 4 of my meds and replace with 4 others. Some prescriptions, some herbs. I am physically and emotionally drained right now so I was happy to hear she wanted me to take a drug vacation! Starting today, with the exception of my morning dose I took before my appointment, I will be drug free until Monday when I start the new protocol! Yay for a break!!

Saturday, September 25, 2010

I'm scared

It's 3am and I can't sleep. I feel so sick, my chest hurts, back back feels....strange, not sure how to describe it. My body feels kind of numb, a scary numb and very nauseous. I feel like I need to go in....but for what? They won't know how to treat me, or what to treat me with. I hate this month, I just want it to be over. Usually your first month of treatment is the worst but this one sure is coming in close. It's been a whole month, stop already, I need a break, I can't take it anymore, I want out! I want normal!!! I ate a cup of fruit before bed, could that be the culprit? Sugar? Food intolerance? I don't know, all I know is I feel like hell and I want to be done.

Friday, September 17, 2010

Needing comfort

Who doesn't need comfort when they feel like hell. Especially when it's an entire month long hell. Good thing I have some willing participants, the 3 yr old and Forrest my piggie. Well the hubby of course too! He's my professional back rubber!



Wednesday, September 15, 2010

Rough month

September has been the worst month so far. I have felt horrible almost the entire month. I am guessing its from the new drops I am on, or maybe my current antibiotic isn't working anymore and I need to change it? I see my doc in 2 weeks, I am sure we will change up a few things. Usually the daycare keeps me busy enough that I don't notice feeling so sick until they are gone or at least a lesser amount and then I tend to crash on the weekends when my body has a chance to take a break. Not this month! I defiantly feel like crap during the day, at night, all the time. I am sooooo tired and drained but then I can't sleep or wake up a million times. I am nauseous most of the day each day and really have to force myself to eat and drink. Usually I have no problem eating ;-) I have thrown up once and had dry heaves one day. Saturday I was debating on going into the ER for IV fluids, I felt so sick I just couldn't force myself to drink or eat. I hadn't urinated in 12 hours and probably only had about 1/2 cup of water. I talked to a friend that is a nurse and she said try Gatorade. I had been avoiding it because there is sugar in it but its better then having to get an IV in an already dehydrated body and the IV would have sugar anyways. It seemed to help and I was able to get enough in to make it until Sunday. Also have been having other symptoms-joint pain, head aches, stomach aches, brain fog. My body needs a break!! I am taking a vacation in a week, I hope I can actually go and enjoy some time off! In the meantime I will keeping fighting these evil spirochetes!!!!

Friday, September 10, 2010

Babesiosis Symptom Checklist

Common symptoms of babesiosis include:
___Chills
___Fatigue and often excessive sleepiness
___High fever at onset of illness
___Night sweats that are often drenching and profuse
___Severe muscle pains, especially the large muscles of the legs (quads, buttocks, etc.)
___Neurological symptoms often described as “dizzy, tipsy, and spaciness,” similar to a sensation of “floating” or “walking off the top of a mountain onto a cloud”
___Depression
___Episodes of breathlessness, “air hunger”, and/or cough
___Decreased appetite and/or nausea
___Spleen and/or liver enlargement
___Abnormal labs (low white blood count, low platelet counts, mild elevation of liver enzymes, and elevated sed rate)
___Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas)
___Joint pain (more common with Lyme and Bartonella)
___anxiety/panic (more common with Bartonella)
___Lymph gland swelling (more common with Bartonella and Lyme)

Very bad herx day

Please let me make it through today! Its a very bad herx day, thinking its going to be another puking day today. I feel so sick, in pain, even though I got 9 hours of sleep I feel like I got 3, and my whole torso is on fire. The pain is giving me goose bumps. I guess it was a bad idea to plan a date night with the hubby, I think its going to be a lay on the couch night praying it stops soon. Its going to be a long day

Tuesday, September 7, 2010

Meds are kicking my butt!!

Today is the first day that I have actually throw up from my meds. I have felt pretty nasty and sick before but haven't actually throw up from them. I guess the new ones are kicking my butt! My heart hurts again today so I hope that means there is a lot of die off happening and that the meds are doing what they are supposed to. I defiantly don't like the feeling of my heart hurting! But even feeling so gross I can tell I am getting better. I was still able to do a little painting yesterday when I was feeling icky. Just tired of it controlling my life and want to function a little bit more like a normal person!

Sunday, September 5, 2010

My heart hurts :-(

I started some new meds this week. My doc warned me that the drops I am starting can cause some major herxing, she wasn't kidding!! I am now treating the co-infection Babesia. I feel horrible this week and having some yucky herxing effects. I am noticing more tonight than the rest of the week. I am very air hungry, no matter how many deep breathes I take I just can't get enough air in my lungs. Wishing I had an oxygen machine right now! My heart hurts, and my chest is tight. It feels like someone is squeezing the living daylights out of my heart. My neck hurts, head hurts, and my arms are numb and tingly. Which makes it interesting typing! I have had some trouble with anxiety and panic attacks over the past year or so due to some trauma from my past that I am not willing to talk about on here. Well, looking back I've had anxiety since a little kid but the panic attacks started with in the last year or so. I always thought the tight chest and heart pain was the anxiety and panic attacks. I know sometimes it was but I am realizing how much is really lyme related. I defiantly have most of the symptom of the Babesia. Air hunger and heart pain are classic symptoms of it. I am hoping once I treat all of this crap I won't have to feel some much anxiety and can feel more free! Wouldn't that be nice and freeing!!

The hubby's food challenge

I challenge my hubby to a food challenge. We were talking about my diet and I said I don't think he could make it on my diet. Ok, well let's make it a challenge! He has to go 2 weeks on my diet-that means no grains, dairy, sugar, caffeine, or alcohol. Do you think he can do it?! I have the hardest time with grains, I love grains. He will have the hardest time with sugar!! He has made it a day now, 13 to go! At least in 2 weeks he can go back to eating like normal! It's not easy, but 2 weeks is doable!

Saturday, August 28, 2010

Feeling put aside

Feeling icky is tricky with friends and family. Lately I feel really put aside. I am not sure if people are doing it on purpose or not but it's how I feel. I think sometimes people don't want to invite me to things or plan things with me because I am not feeling well. I suppose that's understandable but still really upsetting and hard not to get hurt by it. I still like to be invited and I still like to be involved in things. Just because I am sick doesn't mean you have to shut the door and not let me in. I don't feel sick everyday and have much more energy than I did even a month ago. I know I still can't do as much as the average person can--going to the State Fair would be way too much movement and people for me to handle, going to the bigger malls is the same thing and gets to me, etc. But what's wrong with just hanging out? Can't we just relax and catch up and just enjoy each others company? I am just feeling really down about how people treat me sometimes and needed to vent! Wish it wasn't like this!

Thursday, August 26, 2010

Appointment update

Saw my lyme doc today. She is happy with the progress I am making and is hopeful for my future. We added two more drugs to the mix and am starting to treat co-infections. I am having trouble lately with air hunger and breathing issues. No matter how many deep breaths I take I can't see to get enough air. I can also feel my heart skip a beat or feel it flutter, not something you want to feel! Both are common issues with lyme. Air hunger is a classic symptom of a co-infection so hope the new herbs helps to get rid of it!! Sauna treatments are up to me now, I know it works well--too well! I don't know if I can handle that much herxing again, scared to try!

HotPak Huggies

My daughter has a metabolic disorder called MCAD, she tends to have a hard time controlling her body temp and has one of these stuffed animals. She has the turtle since its larger and can cover the most area of the core body. It helps her cool down when she gets really hot and made me think...these would be good for people with Lyme Disease! I have a hard time controlling my body temp too and over heat easily, never used to be that way. Check out the link!!

http://www.hotpakhuggies.com/home.html

Friday, August 20, 2010

A challenge for you

I have a challenge for all that read my blog. I challenge you to get someone in the health care profession to watch the documentary Under Our Skin. It will only take a couple hours of their time and will provide a lot of education. We need to get the word out about this horrible disease!!! The health care field is not educated enough about this epidemic!! Watch this trailer....



Paying the price

I usually can make it about 2 weeks on my strict diet and then break down and eat something I am not supposed to. This month was the best sticking to it and feeling better about food. I caved and ate "normal food" on my 7 yr wedding anniversary and then again yesterday. The anniversary didnt effect me too much, yesterday did. I feel horrible right now. Bad brain fog, sooooo hungry, dizzy and light headed, feel like poo. Its my own fault, but it still sucks. I just want to feel normal from time to time and eat normal food. But its not worth feeling so nasty. Seriously, who's legs forget how to go up a flight of stairs! I kept tripping because my legs wouldnt listen to my brain signals. Foggy!!!!! Annoying!

Thursday, August 19, 2010

Tuesday, August 17, 2010

80-90%

I have made it 4 days feeling about 80-90%!!! I felt really awesome the first couple days and then the pain started to set in but I still felt really good and didnt let it get in the way of what I wanted to accomplish. Right now I feel pretty nasty, I started out great this morning, just tired but now its hit me. BUT I had FOUR days of feeling awesome!!!!! Cant beat that! I hope it gets better and better! 3 months of treatment down!!

PICC line dressing change

A lymie that I know showing her Picc line dressing change. I find the whole thing interesting since I havent had an IV or Picc line yet for my Lyme and thought I would share with who ever wanted to see what its all about



Friday, August 13, 2010

Energy!

Our bathroom has been half primed for probably 6 months or more. I just never had the energy to do it and I knew my joints would be so painful afterwards. Then once I started treating the Lyme there was no way I had the energy or felt good enough to even think about finishing! Yesterday I had enough energy to finish priming, get one coat done AND go to 3 stores that evening! Wow!!! Thats awesome, especially considering I was herxing earlier in the week. I am taking this as a good sign and that my body is starting to be more evened out. Of course I am super tired today and sore but I dont think I am much more sore than the average person! Wooohooo!

Tuesday, August 10, 2010

Herxing

I havent really had a bad herx in a while, well not a while really but the good days are more often. I was herxing pretty bad on...I think it was Sunday. The days kind of blur together. Was in a lot of pain, felt really sick and nauseous, headache, dizzy, and totally drained. I have been really good with my diet so I dont think it was related to the "bad foods", I think just die off. Which is good, just a pain to feel so nasty. I get scared I am going to pass out or have a seizure when its just my daughter and I at home and she would have to fend for herself. When I feel like that I put a open bag of crackers on the table for her just in case! Luckily I dont feel like this when I am working and have a house full of daycare kids. Yesterday I felt pretty darn good and now today I am feeling pretty crappy again. My herx days seem to be getting shorter which is nice but strange to me it would be an every other day type of deal. Last back herx was for an entire week. Fine by me to break it up a little, the good days mixed in makes it seems easier to get through. I am almost done with 3 months of treatment, wonder how many more months I have...

Friday, August 6, 2010

Brain Fog

Feeling like poo today and I have the worst brain fog. Anyone want to switch heads so I can actually think straight?!?! Here is an article on brain fog I found--


Lyme Disease Brain Fog
By Leslie Buterin, The Lyme Lady


Wednesday, August 4 2010

The first time I heard the term brain fog I was in my doctor’s office. The instant I heard that phrase I cried. I cried because finally, one medical professional, took my symptoms seriously and gave me the words to describe what I was living with day in and day out, a seemingly impenetrable brain fog.

For literally decades I had told physicians and psychiatrists alike that my head felt stuffed full of cotton, my brain felt numb like I was under ether. Those same professionals asked me to communicate more clearly. Unfortunately, those words were the best words available to me at the time and the doctors did not seem to have any other words to help me clarify further.

Strong communication skills were required for my profession. So, why was I beginning to stutter? What was I supposed to do on the days when I could not put two words together? Why did I have to search my mind so hard to find the correct word to use in a sentence?

When folks asked why I rubbed my forehead so much, I told them I was doing my darndest to clear the fog. Little did I know I was so close to a term that is significant and meaningful to Lyme literate physicians. That wonderfully descriptive term - brain fog.

As it turns out, the same process that causes brain fog is also the culprit for a long list of other Lyme-related symptoms in the brain, such as migraine headaches, itching head, sinus infections, ugly dreams, narcolepsy, insomnia, even pimples of all things.

If you are like me when I first learned these symptoms were all connected, I found that hard to believe. But I was curious as-all-get-out and wanted to know more. My doctor welcomed my questions and I was not the least bit shy about asking them.

How could all of these seemingly unrelated symptoms be attributed to one disease?

Lyme and Lyme-related co-infections thrive in brain tissue. As they live and multiply, they create infection(s) that in turn cause quite a disturbance in the brain.

Infection leads to swelling of tissue. Since the infection begins in the brain, the tissues in the head swell. Swelling in the head causes sinus problems, frightful dreams and painful headaches.

As the body tries incessantly to rid itself of infection, it uses every means available. This includes trying to push infection out through the skin. When the body can not eliminate the disease through bowel movements, the body eliminates through the skin frequently resulting in Lyme-related pimples on the face, back, chest, even arms.
Granted this is a simplistic explanation. Rest assured there is a quite a body of knowledge that explains how and why Lyme disease and related co-infections gunk up the brain. But for our purposes, we will keep it simple.

Simply said, the head is supposed to be disease-free and safe-place for the brain. As disease enters the head, the brain can no longer function the way it is designed to function. For example, the brain tries to send signals to cells, however infection makes it impossible for the electric impulse to travel safely to those cells, the cells do not receive the signals they were supposed to receive. A lot of thought is lost in the process.

If you are living through this process right now you will nod with understanding upon hearing the term brain fog. I am glad to report that with treatment the fog in my brain has cleared.

Forward this article to friends. They will thank you for it!

Monday, August 2, 2010

I am running out of food options

This whole food topic is annoying to me. I am already restricted and keep finding more foods that bother me, grrr! I am not supposed to eat any grains, dairy or sugar. Apples make me dizzy, I am allergic to carrots, celery and watermelon, sensitive to bananas, and now just discovered cherries make me dizzy and give me a headache! Come On!!! I am running of out things that I CAN eat! I suspected for a while that cherries made me dizzy but I couldnt tell if it was food related, meds related or herxing. It was pretty darn clear to me today, no more cherries!

Sunday, August 1, 2010

Update

It still amazes me how fast I can get worn down. I am feeling pretty good these days, dont get me wrong the pain is intense but I would almost rather have the pain than feel like I have the extreme case of the flu all the time. The other night I was just laying on the couch and pain was shooting from my hips down both legs and back up. It was painful! Thankfully the next day wasnt so bad. I took my daycare kids to Como Zoo and I was dead tired for two days after that! I am still glad to get out of the house and go somewhere fun with the kids but sure wish I could function like a normal person! It may be my own fault since I wasnt very good with my diet this last week. I am having a hard time sticking to it these days, it plain old sucks be SO limited on what I can eat. But I have to remind myself of the pain I will feel if I dont stick to it and how much harder my body has to fight off the bugs. I can totally tell right after I eat sugar how hard my body is working compared to before eating that junk! I have been dead tired all weekend and cant seem to get enough sleep. I am thankful my daughter still takes naps and I can sleep when she naps! That helps A LOT. Not sure how I would make it through the weekend with out those naps! I did some yard work with with the hubby tonight so a little worried what tomorrow will bring but right now I am feeling decent. Thankfully I have acupuncture for the next couple of weeks to help me out! And the chiropractor does wonders!!

Thursday, July 29, 2010

Appointment Update

Saw my doc today. Everything is looking good for the most part and I seem to be reacting well to treatment. Its been two months now! We are still holding off on sauna treatments since I had such a bad reaction to so much die off. Its just too much for me to handle right now. My joints are very sore and painful right now but that is due to not following my diet this week. So I need to get back on schedule with eating, catch up on sleep and try to get myself back to being well balanced. Next month we are going to change things up a bit and start some different treatments. Since I am reacting well to the Lyme treatment we are going to start treating the co-infections that are so common with Lyme Disease. Lets hope I react well to that and it doesnt kick my butt! Right now I feel good besides the joint pain and feeling tired. My hair loss has slowed down a ton, I havent itched all week, and I can sleep better at night! The lemon water also seems to be helping! Yay!!

Wednesday, July 28, 2010

Lemon Water

My doc wants to me drink lemon water daily as it helps support the liver and detox process. Here are some other benefits of drinking lemon water--Top 10 Health Benefits of Lemon Water


Many people often love the tarty flavor of lemon juice in their dishes. But have you ever wondered that you can put this lemon juice to many more good uses than this? Yes! There are enormous benefits of lemon juice and water in your everyday life. You simply need to arm yourself with relevant knowledge and you would soon start valuing this amalgamation more than ever.

Lemon is an inexpensive, easily available citrus fruit, popular for its culinary and medicinal uses. It is used to prepare a variety of food recipes such as lemon cakes, lemon chicken and beverages like lemonade and lemon-flavored drinks. It is also used for garnishing. Lemon juice consists of about 5% citric acid that gives a tarty taste to lemon. Lemon is a rich source of vitamin C. It also contains vitamins like vitamin B, riboflavin and minerals like calcium, phosphorus, magnesium as well as proteins and carbohydrates. Lemon is generally consumed in the form of lemon juice or lemon water. Lemon water makes a healthy drink, especially when taken in the morning. Daily consumption of lemon water provides a number of health benefits like:

Good for stomach
Lemon can help relieve many digestion problems when mixed with hot water. These include nausea, heartburn and parasites. Due to the digestive qualities of lemon juice, symptoms of indigestion such as heartburn, bloating and belching are relieved. By drinking lemon juice regularly, the bowels are aided in eliminating waste more efficiently. Lemon acts as a blood purifier and as a cleansing agent. The intake of lemon juice can cure constipation. It is even known to help relieve hiccups when consumed as a juice. Lemon juice acts as a liver tonic and helps you digest your food by helping your liver produce more bile. It decreases the amount of phlegm produced by your body. It is also thought to help dissolve gallstones.

Excellent for Skin Care
Lemon, being a natural antiseptic medicine, can participate to cure problems related to skin. Lemon is a vitamin C rich citrus fruit that enhances your beauty, by rejuvenating skin from within and thus bringing a glow on your face. Daily consumption of lemon water can make a huge difference in the appearance of your skin. It acts as an anti-aging remedy and can remove wrinkles and blackheads. Lemon water if applied on the areas of burns can fade the scars. As lemon is a cooling agent, it reduces the burning sensation on the skin.

Aids in Dental Care
Lemon water is used in dental care also. If fresh lemon juice is applied on the areas of toothache, it can assist in getting rid of the pain. The massages of lemon juice on gums can stop gum bleeding. It gives relief from bad smell and other problems related to gums.

Cures Throat Infections
Lemon is an excellent fruit that aids in fighting problems related to throat infections, sore throat and tonsillitis as it has an antibacterial property. For sore throat, dilute one-half lemon juice with one-half water and gargle frequently.

Good for Weight Loss
One of the major health benefits of drinking lemon water is that it paves way for losing weight faster, thus acting as a great weight loss remedy. If a person takes lemon juice mixed with lukewarm water and honey, it can reduce the body weight as well.

Controls High Blood Pressure
Lemon water works wonders for people having heart problem, owing to its high potassium content. It controls high blood pressure, dizziness, nausea as well as provides relaxation to mind and body. It also reduces mental stress and depression.

Assist in curing Respiratory Disorders
Lemon water assists in curing respiratory problems, along with breathing problems and revives a person suffering from asthma.

Good for treating Rheumatism
Lemon is also a diuretic and hence lemon water can treat rheumatism and arthritis. It helps to flush out bacteria and toxins out of the body.

Reduces Fever
Lemon water can treat a person who is suffering from cold, flu or fever. It helps to break fever by increasing perspiration.

Acts as a blood purifier
The diseases like cholera or malaria can be treated with lemon water as it can act as a blood purifier.

How much should I drink?

In case you are in good health and weigh 70 kg or less, it is advisable for you to have juice of one-half of the lemon squeezed into one glass of water, twice daily. However, if you weigh more than 70 kg, juice of one whole lemon in a glass of water should be preferred. For maximum benefit, this mixture should also be taken two times a day, though you may dilute more lemon juice according to your taste if you wish.

Do not just remain oblivious to the gifts of nature such as this, for you should always try to make the most of them. So, make it a part of your daily routine to drink a glass of warm lemon water in the morning and then open your gateway to enjoy its health benefits.

Wednesday, July 21, 2010

Here we go again

The itching hasnt been too bad the past few days but woke up this morning and its already started. It ALWAYS starts in my feet and legs but today its started in my arms, strange! Can it really still be from the sauna a whole week later?? Anyone have an comments? I am tired of itching.

Tuesday, July 20, 2010

IgenX and Tick Information

Here are a couple links also-IGeneX is where my labs were sent. They are the best out there for Lyme testing and I recommend everyone getting tested to deal with them! They are who I went through for my last round of testing and finally got diagnosed.

http://igenex.com

http://www.tickinfo.com/index.htm

Testing, Ticks, and Lyme Info

I went to a support group last night and got some hand outs and a tick remover kit. Didnt know there was such a thing! I didnt feel well at all before I went but really wanted to go so pushed myself. Guess it was a bad idea. I literally felt like I was going to die when I was going to bed and prayed if I was going to die that it would be in my sleep. I felt the worst I have felt yet, was crying and made the hubby lay with me until I fell asleep. That and an ice pack on my head calmed me down enough to fall asleep. It was a horrible feeling. Enough with the herxing already, its been 6 days now. Its gotta end soon right?! It was nice to hear the other stories last night and get support from others going through it. Some people looked healthy and others looked very, very rough! Many different experiences and a lot of helpful information. I will post a pic of the tick removal kit.

Saturday, July 17, 2010

Itching, heart racing, crying, shaking, numbness, tingly, Repeat...

I was going insane this morning. I itched a little before bed last night but put an ice pack on and fell asleep and was fine. Woke up this morning and all hell broke loose. I started itching uncontrollably-much, much worse than when I went to the ER last time for it. I tried the oatmeal bath, shaving my legs(the itching ALWAYS starts in my feet and legs and travels from there), lotion, the itching tabs under my tongue the doc said to try, ice. NOTHING was working! The itching was so intense my heart was racing, I couldnt control anything and broke down and started crying. It was just so unbearable I couldnt take it. I started to feel like I was hyperventilating from it and my arms and hands started to tingly, and get numb from my oxygen level being messed up. I iced again, and jumped in the oatmeal bath again. Things started to slow down a bit and wasnt so intense. A friend was on her way over because I started to feel like I was going to faint and throw up. Hubby was working and I was home alone. Right now I feel like I have an extreme case of the flu and wish it would either go away or I would throw up so I can get some relief. I dont even know what to do anymore. Any of you Lymies out there have any tips for me??? This is one bad herx and I am not a fan! I havent eaten anything I am not supposed to, I havent done anything different....maybe from the sauna this week and eating the sugar earlier in the week by accident?? I dont know, I just know its a living hell and I want OUT!!! Not sure you will be able to see how bad the itching was but I will post pics on my legs and me icing it. Maybe some of you have had the same thing??










Friday, July 16, 2010

Can you say Herx?

Short and to the point-I hate herxing, I feel like hell and I want it to stop. I feel like deaths door is knocking. I wouldnt wish this feeling on my worst enemy. I just hope it means there is a lot of lyme die off the last two days. You forgot how bad it feels to herx when there were so many good days in there! I am hoping the good days are just around the corner again.

Thursday, July 15, 2010

Far Infrared Frequency Demonstration - How Far Infrared Works

A lot of people ask me why FAR Infrared Saunas are so much better for you than a normal sauna. I have a hard time explaining it and thought I would share a video a friend found! Good info!


I forgot...opps!

Honestly who forgets that they cant eat sugar!!! I have been so well trained to watch for low and fat free items for my daughter that I forget about myself sometimes. I wanted to give my daughter a treat for having to lug her all over town last night so got lemon ice since the ice cream had too much fat and got one for myself! Hello, totally loaded with sugar. Did I even think of that, nope! Now I am paying big time. I woke up this morning drowning from night sweats and now I have severe stomach cramping. The kind that hurts so bad it gives you goose bumps, hot flashes and I am pacing because the pain is unbearable. Trying to focus on breathing exercises reminds me of being in labor! Sugar is the devil!!!! I hope I remember that in the future! At least I had 3 good days this week, thats a pretty good stretch!

Tuesday, July 13, 2010

Lyme Stories

Here are some videos of people telling their lyme stories. On the left is an article. On the right are the 4 stories.

http://www.wcsh6.com/news/health/story.aspx?storyid=119882&catid=273

Sunday, July 11, 2010

India Arie feat. Pink - I am not my hair

I thought this was funny and fitting for so many Lymies out there loosing their hair! And Pink is my girl so I had to add it to my page!!

Friday, July 9, 2010

ER Trip Today

Well today didnt start out on a good note! Ended up going to the ER. I was severely itchy, shaking, and tingly. It was soooo bad, I couldnt stand it and I was giving myself scratch marks. Its so so unbearable. Had my mom sub for the daycare and a friend brought me to the ER. I wasnt too happy with the hospital. Had to wait 2 hours before being brought back, meanwhile I was itching my skin off. Then once back there no one seems to care and acted too busy for me. The doc came in and I was starting to explain that I thought it was related to the Lyme, he didnt really want to listen. Had his own views. I said I already had a rash on both arms for a couple of weeks but were never itchy and the rash on my legs was from me itching them so hard. He didnt agree, said the rash on the arms probably caused the itching and the rash on my legs caused the itching! There was NO rash on my legs until I couldnt stop itching them. I said I thought maybe the rash on my arms were because the lyme was being pushed out. The only thing I did different in the last day was doing the infrared sauna last night. My theory is that maybe I was itching so bad because the sauna made the lyme surface more so I could fight it off and thats how its detoxing. I could be way off base but I think the itching is related to lyme either way. The doc just said well those arent deer tick bites, its not the bulls eye. Well no crap, I dont mean I just got bit your moron, I mean I am detoxing. He didnt get it. He then said he wanted me on an antibiotic. I said I am on one already. He was like oh you are, what is it. I said I gave the list of all my meds to the nurse, of course they couldnt find it and had to go on a hunt for it. Once he found it he said ok I am not going to put you on one since you are already, hmmm ya think!!! Just told ya that! I just left upset and very unhappy I wasnt being heard. He gave me some prescription for itching that I am supposed to take. Not sure I even want to fill it at this point. The medical field is so frustrating when it comes to Lyme.

Thursday, July 8, 2010

First FAR Infrared Sauna treatment


I went in for my first Infrared treatment tonight. I have never sweat so much in my entire life!! It was a 30 minute session, the lady said try to make it 20 to get the full benefit. I had to open the door a few times to get air but over all it wasnt bad. I hate saunas so I think I did well and this didnt feel like a normal sauna. I hope to go once a week since its supposed to be part of my treatment plan. This should help kick the lymes ass! I just hope tomorrow I feel as good as I do now. Hope the bugs arent too pissed at me for trying to kill them off!!

Wednesday, July 7, 2010

Testing your baby for Lyme

This is a big topic for all the lyme people out there that want to have a baby and there isnt much info on the subject. I got this information from The Lyme Pregnancy Journal http://lymepregnancy.blogspot.com/. Thanks for sharing Sara! Feel free to read and pass along to anyone debating a pregnancy that has Lyme.


So you've devoted the past nine months to making sure you do everything in your power to keep your baby Lyme free. Safe antibiotics throughout the pregnancy, lots of vitamins and approved supplements, extra rest, but mostly prayers and crossed fingers because you know there's still so much unknown about the disease, so all you can do is hope for the best.

I'm not one to offer a strong opinion here, as I'm aware that everyone's Lyme journey is different, but I will break my rule and urge you to do one thing: Test that little babe as soon as he or she comes out. Even if the tests aren't always accurate, there's a chance you might catch those little buggers before Lyme takes hold for the long run. You've got nothing to lose but some money, and it will cost you a hell of a lot more to treat than it will to prevent.

Prior to last week, I had no idea about where to go or what to do in terms of testing once the baby is actually born.

As usual, number one thing to do is make sure all of your doctors are communicating about your progress and treatment course (even if communicating means you personally deliver updated information regarding your status and charts).

It took a little bit of going back and forth between OBGYN and LLMD, but I came across the following information
(Keep in mind, there are probably a bunch of different ways to handle testing, and your doc might offer something different. Please share if that's the case. This is just one option):

IGeneX, the same super-awesome lab that does all of our adult Lyme testing out in CA, also offers cord blood testing for infants. It's not something I've seen on the main site, but when I contacted customer service via email, they promptly responded and gave me the following information:

* The blood testing they do comes from the cord blood and is collected painlessly and immediately after birth

*You can request to have a test kit sent to your house (no doctor order necessary--you can do it yourself) by emailing customer service or calling them

*You'll want to order the test kit a bit early (maybe a month or so? You never know if junior is going to show up unexpectedly)

*For reference, the test number to request is #477

*There is no immediate charge. They will send the test directly to your house. You will enter your credit card number on the form that goes along with the blood sample to be sent in, and you'll be charged once Igenex receives the sample

*The cost of the test is $235 (A hell of a lot less than what I expected/compared to adult testing, so I'm wondering if it's not as extensive as other tests. Sorry, don't have any info about that yet.)

*Whomever delivers your baby will know in advance (have this conversation earlier than later!) to collect the cord blood in your kit

*I'm not exactly sure how blood-sending works. Common sense tells me you can't legally leave the hospital with vials of blood, so I'm assuming the hospital staff will send it out to IGeneX. Again, make sure your delivering doctor knows this in advance

*Results are sent to your home. It's up to you to report the findings back to your LLMD

*If there aren't any spirochetes found in the cord blood, chances are, the antibiotics worked! If they do find traces, obviously, whatever goes through that cord goes to baby. I hope none of us have to experience that, but if it happens, it's not necessarily the nasty, lingering, chronic Lyme that we have. My LLMD said that if it's caught early like this, we'd just put our little guy on a baby dose of antibiotics

There's always the possibility that the baby will test negative but will display Lyme symptoms later on down the road (my LLMD recommends testing the baby again a few months after birth, just to be safe), but let's stay positive for the time being.

It's good that we're not in the dark about our own disease, and we know what to look for. As you probably know already, some symptoms can be sneaky, and a two-year-old isn't going to be able to say, "Mommy, I have vertigo, fifth cranial nerve swelling, and some neuropathy!" In addition, keep an eye out for unexplained pain, developmental and speech delays, signs of Autism, and neurological symptoms.

Again, I do have faith that since we know the drill and we know what we're treating, we won't have to become the horror stories we sometimes read about. It's all about being proactive and staying educated.

I will post more info on testing as I get it. In the meantime, take care, and keep cool (it was over 100 degrees here today! No one wants a cooked baby. Or a melted mommy!)