Tuesday, June 29, 2010

More hair loss

I am scared to loose all of my hair. I wasnt a happy camper when I looked in the mirror this morning and could see spots that were more bare. Its very upsetting, guess its good I have super thick hair to start with. I guess its more common with Lyme than I thought. I saw one person shaved her head because she had such bad bald spots and got a wig. I hope it slows down before it gets to that point. My hubby was trying to make me feel better and said he would love me no matter how much hair I had on my head. Good, cause I might not have any!!

Why is Lyme Controversial

"One main reason why lyme is so controversial is because the doctors don’t agree on how lyme should be treated. The mainstream doctors believe that lyme takes about one to two months to treat and if you still have symptoms of lyme, you don’t actually have lyme anymore it must be some other disease or it is all in your head. The select few doctors, normally LLMDs (Lyme Literate Medical Doctors), believes that it takes at least six months to treat lyme and if you still have symptoms then the lyme is being difficult to treat or a unknown coinfection is not being treated, or a hormone problem has not yet been taken care.

Another reason it is so controversial is the diagnosis part. Your average doctor believes that tests such as the ELISA is accurate enough to diagnose whether you have it or not. If they do end up having you get the western blot test (the most accurate), they want five bands positive to diagnose lyme disease which I think is FDA approved. LLMDs, for the most part, believe that lyme disease should be clinically diagnosed. They do use the western blot test and believe that it take about two bands to have lyme, but if you don’t get two bands positive it doesn’t mean you don’t have lyme. They do not believe in using tests like ELISA, because they are only about 65% accurate. For these two reasons, LLMDs are hard to find because they get bashed for they methods."

Monday, June 28, 2010


I am supposed to be grain, dairy and sugar free. Well also caffeine and alcohol but those two are no problem for me. The food is hard. Any of you other Lymies put there notice this?-- for the most part when I eat the stuff I am not supposed to I feel better (besides more joint pain) I dont feel as sick and seem to have more energy. I figured this was because the the spirochetes feed on that shit and multiply. They are probably happy I am feeding them what the need to surive and my body feels better because the stupid bacteria is happy. Maybe I am totally off base but wondered what others thought. On a side note-since I was in the hospital with my daughter it was very hard to stay on the diet and take my meds at the right times. I feel like hell right now so I am wondering if the diet is now catching up to me and now my body is pissed because it has to work so much harder? Not sure, just rambling to see if other experience any of this.

Saturday, June 26, 2010

Crappy day

Well todays no fun! I actually felt awesome this morning so the 3yr old and I ate breakfast and headed out the door to run errands. I forgot I felt good because I hadnt taken my meds yet. I took them right before we left so after running one errand I felt like hell! I needed to get the second done so just pushed through and got home as fast as I could. Then my daughter got sick. All it takes is throwing up twice with her metabolic disorder MCAD and she has to go into the ER for her D10 IV before she crashes. So off to the ER I went. Daughter puking and mommy feeling like hell. After trying forever to get a damn IV in, hearing her scream for so long, and having to hold her down, I felt like death. That was way too much for my system to handle. But I guess its good I had to hold it together for her sake. The hubby showed up after work and had my requested meal in hand and was there to help with our daughter. Unfortunately he had to leave for his 2nd job and I am her with her alone again. Never seen her so sick before. I am thinking we will be here for a few days. Needless to say I wasnt good staying on track with my meds today and couldnt exactly follow my strict diet. Oh well.

Friday, June 25, 2010

Retiring the flip flops :-(

I havent been able to wear flip flops for a while because my feet are one of the most painful places on my body. Once I started treatment I was able to wear them again, but they are back to hurting :-( This morning when I woke up my toe joints were HUGE and painful. So back to retiring my favorite flip flops booo!

Thursday, June 24, 2010

Not bad

I am feeling pretty good today! Dont feel sick and no horrible stomach pain. I woke up to a lot of pain and swelling but thats how it used to be all of the time so its really not that different. Once I am up and moving around it usually goes away. Now that I am slowing down for the night my joints are starting to hurt again. I have been noticing lately I cant sit pretzel style, or as I tell the kids Chris cross apple sauce! My hips are way too painful once I get up. But I will take a little pain if it means I can make it a whole day without feeling like I have the flu!

Wednesday, June 23, 2010

Thank You

Thank you to all of the people that have been helping me out so much, make a huge difference. Lyme people keep telling me that this is a disease that will test who your true friend and family are. Unfortunately I am already experiencing this. Its too bad people cant see how much it truly effects your life and your families life. It can be an on going disease and its too much for some people to handle. I am thankful for the ones that are willing to help me out and stick around and be supportive. Thank you!!

Monday, June 21, 2010

FAR Infrared

As part of my treatment I am supposed to go to a FAR Infrared sauna 1-3 times a week because Lyme is heat sensative. I havent worked up enough energy to go yet but plan to start this week or next. Here is some info about it if you care to learn more--

Some call it the ‘Light of Life’, others ‘Vital Rays’, NASA calls it ‘Bioenergetic Rays’; but, whatever nickname it is given far infrared has proven to be as important to human life as is oxygen, food, and water.

Far infrared (FIR) is one range of the electromagnetic spectrum of waves emitted by the sun. Humans can not see this light, but know of its existence from the warmth they feel. To further explain how it is felt imagine yourself on a picnic during a hot summer day. It has become picnic protocol to set up the food under the shade of a tree. The air temperature does not change from the sun to the shade. So, why set up in the shade when the air temperature is the same in both locations? Because, the far infrared rays from the sun does raise the skin’s temperature when in direct contact.

Unlike other saunas, the far infrared saunas’ heat penetrates at least 1 1/2 inches below the skin’s surface. This creates a deeper cleansing of the tissues. Far infrared heats the body directly. It does not use the air surrounding the person as a go between. The direct contact far infrared creates with the individual will result in a more intense sweat, while actually generating a lower temperature. This in turn allows more toxins to be eliminated than with other higher heated saunas.

A 30 minute far infrared sauna is as advantageous to the cardiovascular system as is a 6 mile run. In fact, NASA has used far infrared for cardiac conditioning. With far infrared heat the blood vessels become dilated which helps lower blood pressure, increases blood circulation, boosts cellular metabolism, smoothes the walls of the blood carrying system and increases the production of both white blood cells and endorphins. The blood and its systems gain vigor which results in a strengthened immune system, quicker injury healing, normalized cholesterol, recovered energy and improved oxygen levels.

Our tissues normally produce infrared energy for warmth and tissue repair. Tissue production of infrared energy is associated with a variety of healing responses. At times, the infrared energy in our tissues may require a boost to a higher level to ensure the fullest healing possible for tissue repair.

Body tissues that need an infrared boost, selectively absorb infrared rays. The tissue will only use the infrared rays in areas were it is needed. After boosting a tissue’s infrared energy, the remaining rays pass onward harmlessly. This phenomenon is called “resonant absorption.”

Research has shown that people that are chronically ill or with toxic levels from exposure to any toxin, pathogen, or nano advanced material have a lower base temperature than normal. Their natural far infrared energy source is being dimished by the condition.

FIR will allow the body to attack any infectious material, foreign invader (chemicals), biofilms, nano microbic material and biomaterials. The melting point of many chemicals is greater than the body, but FIR creates temperatures that are RADIANT HEAT (cold heat) and will not burn the skin just push out foreign matter. FIR accelerates your internal regeneration of cells and the removal of superoxide molecules and toxins.

There is a plethora of chemicals the body can not metabolize so when ingested these toxins tend to be stored in fat cells. A Chronic Toxic Overload is created when hundreds of chemicals dwell in the body. This condition causes dozens of debilitating illnesses. Excessive toxins cause the mechanism which creates enzymes to malfunction, resulting in nutritional shortages, which in turn can lead to hormone and brain imbalances.

The heat from far infrared prevents the growth of bacteria and molds. Along with this effect, caused by the heat, the body will also activate its immune system anytime its core temperature rises above the norm. This stimulation of the immune system helps the body to more quickly rid itself of other illnesses.
Infrared Sauna heat increases your blood circulation and stimulates the sweat glands, releasing built up toxins in the body.
Daily sauna sweating can help detoxify your body as it rids itself of accumulated highly toxic metals (lead, mercury, nickel, and cadmium) as well as alcohol, nicotine, sulfuric acid, and other organic and inorganic compounds.
infrared heaters will raise your core body temperature, inducing an artificial fever. Fever is the body’s natural mechanism to strengthen and accelerate the immune response, as seen in the case of infection.
This enhanced immune system, combined with improved elimination of toxins and wastes via intense sweating, increases your overall health and resistance to disease.

Rough AM

Today hasnt been going the greatest. I had severe stomach pains this morning that was making me feel like puking and I was getting goose bumps it hurt so bad. Moving around didnt help, and curling up didnt help. I just had to ride it out until the pain passed. I am also really hot today and keep over heating. I upped one of my drops today so maybe thats what did it? Not sure. Now I am just really worn down from the pain taking so much out of me.

Sunday, June 20, 2010


I need new breakfast and snack ideas, getting sick of the same old stuff. I usually have a fruit smoothie and hash browns for breakfast. Last time I ate eggs I felt incredibly sick and havent ate them since. Right now I am trying almond butter on gluten free bread with my smoothie. The almond butter isnt too bad, supposedly peanuts and peanut butter are a lot tainted than almonds. I am still not a huge fan of them but I need more options. Almond butter is SPENDY! I better like the stuff if I am going to buy a whole jar!! I still dont like gluten free bread, yuck!! I remember how nasty it was last year when I was gluten free for a while. I need something though so just need to get used to it I guess.

Its very strange having things in the house again that the 3yr old cant have because of her MCAD, a metabolic disorder. She is limited to 4 grams of fat per meal, so nuts are defiantly out of the questions. For the most part we followed her diet and only had things in the house she could eat. I feel like I am cheating eating all these high fatty foods. Its strange after 3 years of not really eating that stuff. Now it another whole new diet for me, kind of frustrating to have to change our eating habits so much over the last few years. There is no more making one meal anymore, dinner is 2-3 now. There is no way the 3yr old could eat my diet and the hubby isnt going to try it and I dont blame him. I have him try things from time to time and he makes the ick face!

Friday, June 18, 2010


I should be in bed right now but I am hurting too much to sleep. I cant tell if its a herx or if I just over did it today. I think more things hurt than not right now and just trying to ride out the pain until I get tired enough my body wont care and can fall asleep right away. I was feeling pretty good today so probably over did it. I get too excited when I feel good and forget to pace myself. Seems as if going to Target put me over the edge, wasnt feeling too bad before I left but by the time I left Target I was in a lot of pain and got worse once I got home. Watching The Hangover and listening to Pink should help...."How about that ride in"....

31 Lyme Facts

31 Lyme Facts

Lyme Fact #1: The most common place to get bitten is in your own yard. Doctor's commonly will say, "Lyme doesn't exist in this area". Don't buy it.

Lyme fact #2: Lyme may be transmitted sexually, through saliva, organ donations, blood transfusions and passed to your children congenitally.

Lyme fact #3: Fleas, mosquitoes and other blood-sucking insects can also carry Lyme disease. These insects feed on any animals, deer, mice, birds, etc., pick up bacteria, then feed on you.

Lyme Fact #4: It is not uncommon for an entire household to test positive for Lyme, but unlikely that two people will have identical symptoms.

Lyme Fact #5: Lyme affects people in varying degrees from functional to bedridden.

Lyme Fact #6: Lyme Disease, which is rarely ever talked about or discussed in the media, has become the fastest growing infectious disease in the U.S. (believed to have surpassed AIDS) and the number one vector (insect) borne disease.

Lyme Fact #7: You are far more likely to get Lyme Disease than West Nile Virus, at least 10 times more likely.

Lyme Fact #8: Information about Lyme is usually reduced to "look for a rash, flu-like symptoms, joint pain, fatigue". These can be part of Lyme but not always and there are over 100 other symptoms

Lyme Fact #9: Having a negative Lyme test means nothing. The standard blood test your primary doctor orders has been proven to be an unreliable test

Lyme Fact #10: Children ages 5 – 14 are most likely to get infected.

Lyme Fact #11: Lyme disease has been called the "Great New Imitator", having up to 100 different symptoms

Lyme Fact #12: Ticks carry more than just Lyme bacteria; they also carry co-infections, Babesiosis, Ehrlichiosis Bartonella and Mycoplasma. Each of these bacteria has their own set of symptoms

Lyme Fact #13: Lyme is a "smart" bacteria. Shortly after entering the blood stream it quickly enters the Central Nervous System. Because of its corkscrew shape, it can "camouflage" itself by entering healthy cells, going unnoticed by the immune system, therefore it is not attacked. It can sense a hostile environment (antibiotics) it can change shape and form "cysts", where it can be "safe" from most antibiotics.

Lyme Fact #14: Lyme disease can be fatal if untreated

Lyme Fact #15: Lyme disease was named in 1977 for the town of Lyme, Connecticut, where a cluster of the disease was observed.

Lyme Fact #16: Fewer than 50% of patients with Lyme disease recall a tick bite.

Lyme Fact #17: Fewer than 50% of patients with Lyme disease recall any rash

Lyme Fact #18: Untreated, or inadequately treated, Lyme may cause long-term, persistent illness that can affect many systems of the body.

Lyme Fact #19: The Lyme disease spirochete can invade the central nervous system within days of a tick bite.

Lyme Fact #20: "...Lyme disease, particularly when it involves the central nervous system, can be an extremely debilitating, bizarre, terrifying and perplexing disease."

Lyme Fact #21: Lyme disease patients can experience an extreme sensitivity to sound -- the volume of the entire world seems on high.

Lyme Fact #22: There is no established cure for chronic Lyme disease.

Lyme Fact #23: When the human brain becomes inflamed, the result is short-term memory problems.

Lyme Fact #24: If Lyme disease is not diagnosed and treated promptly, it progresses to a more severe stage and spreads infection to other parts of the body, such as the nervous system and heart. This can result in potentially life-threatening complications, such as meningitis and cardiac arrhythmias. Symptoms of these complications can include high fever, intense headache, stiff neck, decreased consciousness, coma or abnormal heart rhythms

Lyme Fact #25: Lyme disease affects the joints of the body with chronic arthritis. Symptoms include severe joint swelling and pain.

Lyme Fact #26: Neurological Symptoms include Numbness, Limb pain & weakness, Radiculitis (numbness, tingling, burning), Bell's palsy, Visual disturbances, Poor motor coordination, Encephalopathy, Memory loss, Difficulty with concentration, Change in mood, Changed sleeping habits, Thinking difficulties, Nerve damage

Lyme Fact #27: Lyme can cause Encephalomyelitis –Limb weakness, Motor coordination problems, Muscle weakness

Lyme Fact #28: Lyme can cause Heart abnormalities such as Irregular heartbeat, Dizziness, Shortness of breath

Lyme Fact #29: Other symptoms include: Eye inflammation, Conjunctivitis, Hepatitis, Severe fatigue, Chronic skin disorders, Joint problems, Swelling and joint pain, Tingling and numbness in the hands, feet, and back, a lack of energy that does not get better, trouble focusing thoughts, poor memory, weakness or paralysis in the face muscles.

Lyme Fact #30: Lyme mimics many diseases, such as ALS, MS, Fibromyalgia, Lupus, Encephalitis, CFIDS

Lyme Fact #31: Lyme disease is one of the most misunderstood and controversial diseases of our time


The run away pill

I was laughing at myself and had to post-
I had my breakfast pills out ready to go and dropped one. You know that your meds are spendy when you are sitting there searching for that bugger and not giving in until you find it. I didnt care how dirty it was, I would just blow it off and down the hatch it would go. Luckily I found it and it wasnt too dirty haha! I wasnt about to let that thing disappear!!

Thursday, June 17, 2010

Sonya's PSA - Sonya Nelson

The joy of guilt and anger

I am guessing I am not the only one our there with Lyme that feels guilty and angry a lot. Between working full time and being a mom thats where all my energy goes. By the end of the day I am absolutely drained and could go to bed at 6 or 7pm. I feel guilty I cant keep up with the house work, the laundry piles are massive, the outside looks terrible, you cant see the carpet in the living room due to all the toys and book and whatever else my 3yr old gets into, everything is thrown down that basement stairs that I cant get to so the rest of the house doesnt totally look like a disaster zone. I am able to sanitize and clean for the daycare areas and thats it; even that is hard for me but it has to be done! I am defiantly not keeping up (sorry daycare families)but I am trying my best. With the hubby back to working two jobs its hard for him to keep up around here too. He is tired and needs to spend quality time with the 3yd old. I feel bad my husband has to pick up all the slack around here because I just cant do it. The 3yr old gets shipped to grandmas a lot because by Friday I can hardly function and she needs to get some quality attention. At least she likes it!! Feel guilty about the cost. Its is incredibly expensive for the treatments and doctors visits, none of it is covered by insurance. My family has to sacrifice because of all the costs, very frustrating!! Its so easy to get low about it all and get angry at all the doctors I saw that never figured it out and how long I had to suffer before figuring it out and how it has attacked my body and been slowly killing me for years now. But I am thankful to have an answer finally and can work on getting better.

At least today I dont feel too bad. Just really worn down. Its a nice day out, the kids are enjoying it and watching and playing with them always makes me feel better! AT least I can still say I have a job, a house, and two vehicles. A lot of Lyme people cant say that.

Hair loss?

Whats with all the hair loss? I am loosing fist full of hair everyday. No one warned me that could happen :-(

Wednesday, June 16, 2010

Minnesota Woman Talks About Her Lyme Disease

May 8, 2010 8:51 am US/Central
Minnesota Woman Talks About Her Lyme Disease
By JODIE TWEED Brainerd Dispatch

Elizabeth Fadling was only 5, but she remembers when she got bitten by a deer tick while visiting relatives in Pennsylvania back in 1985.

She exhibited classic Lyme disease symptoms following the bite but no one figured that out -- specialists at the University of Minnesota, Mayo Clinic and other doctors she saw in Brainerd. It wasn't until last year, after 26 years of suffering from unexplained and debilitating illnesses, that Fadling was finally tested by a nurse practitioner who suspected she had Lyme disease all along. In January 2009, she tested positive for Lyme disease, as well as two other tick-borne co-infections.

Fadling, a 1997 Brainerd High School graduate who lives in Little Falls with her husband, Chris, and 2-year-old daughter, Paige, is hoping that by sharing her story it will help others identify tick-borne illnesses sooner, before they end up in a wheelchair like she is now.

When Fadling was 5, she immediately got a fever and fell ill after being bitten by the tick. She also had a rash, but not at the site of the bite. Doctors told her dad, Dale Rapovich, that she had the flu and possibly a kidney infection. A couple months later, as a Baxter kindergartner, Fadling's legs and knees began to grow stiff and swollen; her joints ached. She would become so exhausted at school that she'd lie down flat on the floor when she got off the bus, falling asleep while still wearing her coat and backpack.

This was not normal behavior for a child, her babysitter would tell her dad.

Rapovich, now a retired Brainerd sixth-grade teacher, tried everything he could think of to get her well. He took her to the University of Minnesota and the Mayo Clinic. Fadling was diagnosed in first grade with juvenile rheumatoid arthritis at the University of Minnesota.

She suffered from horrible stomach pains and every test and colonoscopy revealed severe inflammation but doctors couldn't come up with any explanations. In fourth grade she was put on antidepressants because her doctors felt she may be causing the symptoms herself.

She often suffered silently, not letting on that she was in pain or fatigued. She tried hard to stay awake in class because she would be made fun of if she fell asleep. Even when she would suffer from debilitating headaches or was in pain and vomiting blood, she knew it didn't do much good to complain.

"You learn you have to be tough and suck it up," said Fadling.

"I brought her to doctors," said Rapovich. "There's still a lot of guilt left over for me."

"It's not your fault, dad," she told her father.

At 18, she quit taking antidepressants and for the first time, she said she felt she was clear-headed. But she continued to be very sick. Over the years, she has suffered from brain swelling and has been hospitalized many times. In 2004, a Florida oncologist told her she had cancer, or lymphoma. She was later found not to have cancer at all.

She and her husband, Chris, who married in 2005, suffered the loss of two babies during pregnancy. Devastated, they moved from Florida to Little Falls to be closer to family and try to get pregnant again. After a high risk pregnancy, Fadling gave birth to their miracle baby, Paige, on Aug. 25, 2007. At five weeks, Paige had surgery on her stomach, which didn't open into her intestines, causing frequent vomiting. At 9 months, she was sent to Children's Hospital in Minneapolis and doctors discovered that for some unexplainable reason she had membranes obstructing her ability to absorb food and fluids. She also was born with an enlarged muscle at the top of her heart, as well as a hole in her heart. Her leg bones also twist inward, causing many trips and falls for the toddler.

"Doctors couldn't explain this stuff," said Fadling.

Paige also was diagnosed with failure to thrive. She began suffering from uncontrollable muscle ticks and joint pain, just like her mother. The little girl's joints would become so hot and painful that her parents would find her leaning up against the glass patio door to cool them down.

By last Thanksgiving, months after Fadling was diagnosed with late stage Lyme disease, she realized her daughter was suffering from the disease, too. It was devastating.

"I fought really hard to get her here," Fadling said, sobbing. "You fight to bring your child into this world and you think everything will be OK if I can just get her here. I was so naive. I had no idea. I would do anything for her."

"As a mom, you just want your kids to be healthy and happy, running and playing. You feel guilty. If I had known I had late stage Lyme disease and I would pass this on to my daughter, I would have adopted. I would never had done this to her intentionally. I wouldn't have done that on purpose. Not to my daughter. When I see her suffering, she got it from me. It's hard. Hard to watch your child suffer."

Fadling's pregnancy, coupled with the Lyme disease, caused her endocrine system to go "haywire." Her muscle twitches, spasms, night sweats, dizziness and pain grew worse. She couldn't think clearly and would forget things. One of her most frightening moments was when she had Paige in the car with her and they were driving in Little Falls when she couldn't remember where she was going or where she lived. She frantically called her husband at work and he guided her home. On the counter were their library books, which she had meant to return that day.

Last fall Fadling began using a wheelchair because of her seizures and chronic leg and joint pain. In December Paige began going to day care because Fadling and her husband agreed that she could no longer safely stay home with her mother.

"It's hard to admit when you can't do things anymore," said Fadling. "It's hard. Her first day of day care I felt my heart was ripped out of my chest."

After seeking help in the state and achieving no success in her treatments, Fadling sought out a Lyme disease specialist in New York. He accepted them both as patients. On April 7, she and Paige traveled to Manhattan to see him. She has recently begun an aggressive treatment plan involving intravenous antibiotics. Paige is also being treated with a combination of medications.

Her doctor, Dr. Bernard Raxlen, is featured in "Under Our Skin," a documentary about late stage Lyme disease. Mother and daughter also have doctors they see locally who are working together with Raxlen to help treat their Lyme disease. They return to see Raxlen in August.

There is controversy surrounding chronic Lyme disease and whether long-term antibiotic treatment is safe and effective. The Infectious Diseases Society of America concluded in its 2006 guidelines, upheld by a review panel last week, according to the Associated Press, that clinical trials for extended antibiotic treatment of Lyme disease -- usually given intravenously -- are unproven and potentially dangerous. In last week's report, the review panel of doctors and scientists unanimously endorsed the 2006 guidelines. The panel said the guidance was based on the best evidence at the time and is supported by evidence published since then, according to the AP. Many Lyme disease patients are critical of the IDSA's findings.

Raxlen told Fadling that it could take six months, or maybe even two years, until she might begin feeling better because of how long she went undiagnosed.

Still, for the first time, Fadling said she feels optimistic that she could be walking in a 5K to raise funds for Lyme disease prevention next summer.

"It gave me a tremendous amount of hope," said Fadling. "He told me that if he can't help me, he'll never abandon me. He does believe I can get better and Paige can live a pretty normal life."

Most of the medications that they are taking aren't covered by insurance and are expensive. Friends have set up a benefit fund for the family. Donations to help pay for medical expenses may be sent to: Benefit Fund for Elizabeth Rapovich Fadling, Mid-Minnesota Federal Credit Union, 13283 Isle Drive, Baxter, MN 56425.

Fadling also has a CaringBridge website. On her site she has listed resources for those who also are suffering from Lyme disease.

"I lost 26 years of my life when I haven't been able to be productive," said Fadling. "I'm still 31 and I still want to be normal and I have hope that I'll get there. It might take a couple of years but I believe I won't always be in a wheelchair."

Fadling advises those who suspect they may have Lyme disease to immediately find a Lyme literate doctor who will treat them.

"Don't wait," said Fadling. "You know your body. If a doctor won't treat you, find a doctor who will listen to you."

She strongly encourages people to use tick repellents with DEET and to spray their clothing with permethrin, which kills ticks for up to three months.

"This is preventable," said Fadling. "This didn't have to happen."

10 Lyme Disease Facts for Parents

10 Lyme Disease Facts for Parents

Under Our Skin - Excerpt 2 - The Perfect Storm

Today started out good, I actually put makeup on so I didnt look like death for the daycare families. Since then I have had severe stomach pains which is proving difficult to force food down! I normally dont get so many stomach aches and pains so its making me a little nervous. I went against the rules last night and had a candy bar, maybe my body is pissed at me now. If thats the case its not worth going against the rules for a sugar fix. Remind me of that next time I say I am going to kill someone if I dont get chocolate!!!

Tuesday, June 15, 2010

I never thought I would be using a pill organizer this HUGE. I take meds 4 times a day and drops 3 times a day. They taste pretty nasty so I have gum waiting for me and get them down as fast as I can 

My breakfast dose

It was hard for me to get used to taking so many pills in one sitting but it really isnt that bad. Other Lyme people take more and I am sure many people take that many vitamins in the morning, 

My treatments


Most people I talk to have no idea what I am talking about when I say I am herxing. Here is some information on it--

The herxheimer reaction, nicknamed "herx" or otherwise referred to as Jarisch-Herxheimer (J-H) is a phenomena originally observed in the treatment of syphilis, but later found in other illness. In general terms, it is described as a temporary increase of symptoms when anti-syphilitic drugs (antibiotics) are administered.

Basically it is a worsening of symptoms due to the antibiotics doing their job & killing off the bacteria. The die off of the bacteria causes your body to become "toxic". The kidneys & liver can only do so much to detox you, so I must drink a lot of water and do what your doctor recommends.

It's hard to tell the difference between regular lyme sypmtoms & a herx. So herxing is good. If indeed that is what it is. But your doc does not want you to herx "hard" because it further weakens the immune system


How the Lyme is effecting me

You may see me write that one day I feel awesome and the next I feel like crap. Lyme seems to go up and down for some people and I am one of them. I have days or weeks were I am herxing so it effects me more. I will usually have a few days where I feel like hell and would just rather die in my sleep than to have to deal with it one more day. Going up one flight of stairs kicks my butt and feels like I just ran 5 miles. Walking through the store is exhausting and I get really overwhelmed and dizzy. Its too much movement, too many people around me, and too much noise. It doesnt take much at all for my nervous system to get overloaded! Its a very scary thing to get so overloaded that you feel like you are going to pass out. I am absolutly exhaused and sleep all night and still feel like I could sleep all day. Sometimes I will sleep 12 hours on the weekend and still take a 2-4 hour nap in the afternoon. My poor body is fighting so hard! The poor daycare families dont get to see me with make up on those days! Good thing my hair is long enough for pony tails now!!

Then I will start to feel better and have some days that are much better. I was actually able to go to Como Zoo with the 3rd old and hubby for a few hours! I didnt feel sick until the very end when we were going to leave anyways. It was amazing to feel so good I could actually do this and not get totally overwhelmed, feel like I needed to puke or get super dizzy! These days give me hope and help me to see that there is a light at the end of the tunnel and its worth the fight. The bad days are easier when you know there will be at least a couple good days in there. I was loosing hope for a while there, felt so horrible and there werent any good days in sight.
Today has been a rough day. I am extremely fatigued, a little dizzy, have sharp stomach pains and just plan old dont feel good. But still nothing like I was a week or two ago when I was SO dizzy I couldnt stand it. I would much rather have any other symptom than the dizziness!!! Working with kids all day usually keeps me busy enough where I am distracted from the aches and pains. They always want to give hugs and of course that makes anyone feel better!

Under Our Skin: An Infectious New Film

Under Our Skin: An Infectious New Film

Lyme disease spirochetes

My treatment plan

Since I have had it for so long its not the normal 2 weeks of antibiotic treatment. The length of my treatment is really unknown at this time but my doc guessed around 6 months or so. It all depends on how my body reacts and how well I can fight off the bacteria. For some they can totally kick it and have a normal healthy life again. For others they have chronic Lymes and will always have it. Hopefully I can kick its ass and feel normal again!! Right now I am on 22 pills a day and 18 drops a day. I should be at a higher dose for the drops but they really kick my ass and can only handle this dose for now. I am taking an antibiotic, an anti malaria drug and tons of herbs. Its kicking my butt but can tell my body is working hard at fighting off the damn spirochetes. I am also off all grains, all dairy, and all sugar since the bacteria love that crap! Most days I have some sort of effect. Dizziness, which can range from something I can handle and function with to some days I am on the floor and cant stand. Nausea, stomach aches, head aches, joint pain, jaw pain, muscle pain, hurts to be touched, night sweats, bad dreams, insomnia, extreme fatigue, burning, feeling like all of the blood is draining from my body. I am not listing all of this for sympathy, just to inform people that would like to learn more.

What is Lyme Disease

What is Lyme disease? What causes Lyme disease?

Lyme disease is a bacterial illness caused by a bacterium called a "spirochete." In the United States, the actual name of the bacterium is Borrelia burgdorferi. In Europe, another bacterium, Borrelia afzelii, also causes Lyme disease. Certain ticks found on deer harbor the bacterium in their stomachs. Lyme disease is spread by these ticks when they bite the skin, which permits the bacterium to infect the body. Lyme disease can cause abnormalities in the skin, joints, heart, and nervous system.
What is the history of Lyme disease?

What is the history of Lyme disease?
Interestingly, the disease only became apparent in 1975 when mothers of a group of children who lived near each other in Lyme, Connecticut, made researchers aware that their children had all been diagnosed with rheumatoid arthritis. This unusual grouping of illness that appeared "rheumatoid" eventually led researchers to the identification of the bacterial cause of the children's condition, what was then called "Lyme disease" in 1982.

Ticks are carriers of the Lyme bacterium in their stomachs. The ticks then are vectors that can transmit the bacterium to humans with a tick bite. The number of cases of the disease in an area depends on the number of ticks present and how often the ticks are infected with the bacteria. In certain areas of New York, where Lyme disease is common, over half of the ticks are infected. Lyme disease has been reported most often in the northeastern United States, but it has been reported in all 50 states, as well as China, Europe, Japan, Australia, and parts of the former Soviet Union. In the United States, it is primarily contracted in the Northeast from the state of Maine to Maryland, in the Midwest in Minnesota and Wisconsin, and in the West in Oregon and Northern California.

What are symptoms and signs of Lyme disease?

Lyme disease affects different areas of the body in varying degrees as it progresses. The site where the tick bites the body is where the bacteria enter through the skin. As the bacteria spread in the skin away from the initial tick bite, the infection causes an expanding reddish rash that is often associated with "flu-like" symptoms. Later, it can produce abnormalities in the joints, heart, and nervous system.

Lyme disease is medically described in three phases as: (1) early localized disease with skin inflammation; (2) early disseminated disease with heart and nervous system involvement, including palsies and meningitis; and (3) late disease featuring motor and sensory nerve damage and brain inflammation as well as arthritis.

In the early phase of the illness, within days to weeks of the tick bite, the skin around the bite develops an expanding ring of unraised redness. There may be an outer ring of brighter redness and a central area of clearing, leading to a "bull's-eye" appearance. This classic initial rash is called "erythema migrans" (formerly called erythema chronicum migrans). Patients often can't recall the tick bite (the ticks can be as small as the periods in this paragraph). Also, they may not have the identifying rash to signal the doctor. More than one in four patients never get a rash. The redness of the skin is often accompanied by generalized fatigue, muscle and joint stiffness, swollen lymph nodes ("swollen glands"), and headache resembling symptoms of a virus infection.

The redness resolves, without treatment, in about a month. Weeks to months after the initial redness of the skin, the bacteria and their effects spread throughout the body. Subsequently, disease in the joints, heart, and nervous system can occur.

The later phases of Lyme disease can affect the heart, causing inflammation of the heart muscle. This can result in abnormal heart rhythms and heart failure. The nervous system can develop facial muscle paralysis (Bell's palsy), abnormal sensation due to disease of peripheral nerves (peripheral neuropathy), meningitis, and confusion. Arthritis, or inflammation in the joints, begins with swelling, stiffness, and pain. Usually, only one or a few joints become affected, most commonly the knees. The arthritis of Lyme disease can look like many other types of inflammatory arthritis and can become chronic.

Researchers have also found that anxiety and depression occur with an increased rate in people with Lyme disease. This is another important aspect of the evaluation and management of this condition.

The start

After 3 years of health problems, god knows how many lab draws, cat scans, joint scans, x-rays, different meds, a trip to the Mayo Clinic, being diagnosed with RA and many other things...I have FINALLY been diagnosed with Lyme Disease! Thank god I finally have an answer after being in almost constant pain for 3 years. I was diagnosed on May, 26th 2010. I ended up going to a natural clinic called MN Natural Medicine since no one else would test me correctly! I started treatments 2 weeks prior to my results, the day they did my lab work. Thats how certain the doc was I had it. Its already been a long road but I am hopeful there will be an end this time, or at least be able to treat what has been attacking me for so long.