Lyme Disease Awareness: Kara's Story

With May being Lyme Disease Awareness Month, I want to share my “story” in hopes that someone will benefit from it – either by letting you know you are not alone or by helping you or someone you love receive a correct diagnosis. I have divided it into chapters so if you need to take a break, you can easily find where you left off. Truthfully, this is only a small snapshot of what I went through.
  

Chapter 1: The Beginning

Up until 1999, I was an active, busy young woman. I was happily married and had a beautiful daughter and another baby on the way. I loved being a mother. I also liked gardening, enjoyed nature and had fun inventing new recipes in the kitchen. Italian food was my favorite thing to make and, above all, eat! Well, that and sushi.
 

In December 1998 while I was pregnant with daughter #2, I caught some kind of virus or bacterial infection that was going around which turned into bronchitis. I went on antibiotics for it and afterward, never really felt like “myself.” I was tired and didn't have much stamina.
 

Baby girl #2 was born in July 1999 by c-section. After that, I felt even worse. I was so tired and weak. It took me about 6 weeks before I could stand up long enough to cook dinner. My doctor said he'd never seen anyone take this long to recover from a c-section. Eventually I got "better" and was functional. I remember being so tired all the time. I went to the doctor and had my thyroid checked. He told me it was fine. My baby was not a good sleeper and cried a lot. I also had a 22 month old daughter. She was a bundle of energy and never stopped except during her 3 hour afternoon nap.

In Feb 2000, we moved into a brand new home that we'd built. We were planning on staying there "forever." That first year we were all sick with something or other all the time. After about 9 months, my husband and girls were fine. They felt great. But I still struggled. It seemed like I was constantly sick with a cold or flu or something. Finally I found a practitioner (not a doctor) who told me I wasn't detoxing the chemicals from our new house properly. That was why I was sick. I began taking some vitamins and detox support and felt TONs better. I thought all would be well . . .
 

Chapter 2: The Search for Answers Begins

In early 2001 I started having brain fog. My thoughts would be all jumbled for short periods of time every week or so. My legs and lower back ached incredibly bad all the time. I took a lot of epsom salt and baking soda baths to help with the pain. I was exhausted no matter how much sleep I got and I'd wake up way too early in the morning. I also noticed my body couldn't regulate my temperature very well. I was comfortable at 74 degrees. At 75 or above I was very hot and sweating, and at 73 or below I was very cold and had to put on a sweater.
 

I went to a couple of doctors in search of answers. They ran blood work and found nothing out of the ordinary. Arrrgh. I was told I was too stressed because of my small children and needed to “slow down” and take more time for myself. Several offered me anti-depressants. I wasn't depressed so I passed.
 

As time went by, I noticed the supplements I'd been taking for chemical detox support gradually stopped working. They started causing the same symptoms they used to alleviate. What was going on? I was very confused by all of this. I started doing cold-pressed caster oil liver packs for detox support. They worked great! It relieved much of my pain and brain fog as long as I did one every day.

In July 2001 I went in for my OBGYN check up and the doctor found a 6” dermoid cyst in my left ovary. It wasn't there the year before. I had surgery to remove the ovary in Sept 2001 and recovered fairly quick. Once again, I believed my troubles were over. 
 

In November I started having dizziness. By December it had progressed to vertigo off/on all day. At the end of December 2001, I had surgery again to repair an incisional hernia caused by the surgery in Sept. That was the last straw. When I woke up from that surgery, I was never the same again. I had vertigo 24/7, was utterly exhausted, had migraine headaches, muscle aches, muscle weakness, brain fog, etc. I could still function but just barely.
 

In 2002, I went to doctors and more doctors. They all ran tests. The results were always normal. I started doing a lot of research on my own but still couldn't come up with anything that fit the breadth of my symptoms.
 

I finally decided that all this craziness must be caused by old emotional baggage. No one else had any better ideas. So I found a fabulous practitioner who knew all kinds of energy balancing and techniques. He knew both eastern and western approaches. The emotional and energy work really did wonders for me. I dumped a lot of baggage from my childhood and generational things that had been imprinted on my DNA. Emotionally, I felt “free-er” that I ever had before.
 

But my physical health continued to decline and at a faster and faster pace.
 

Chapter 3: The Plot Thickens

In October 2003, my family came down with the flu. I caught it but didn't have any of the regular "flu symptoms." Instead, I started having tremors in my arms and hands, horrible anxiety, severe muscle pain and insomnia. This is on top of the vertigo, migraine headaches, muscle weakness, diarrhea, exhaustion, etc.
 

At the time, I went to my doctor and he said I was fine. Just too stressed and anxiety was the problem. He gave me some anti-anxiety medication and said to try some next time I couldn't sleep. And get rid of all my commitments, etc. Just relax, relax, relax. I told him I was meditating and relaxing all day to keep the tremors down. But if I even had 1 thought go through my mind, the tremors would start again. Obviously, he didn't believe me. He just kept saying I was too stressed. Well, I was tremoring like crazy. Of course I looked stressed.
 

A few nights later as I lay wide awake in my bed at 3 or 4:00 AM, shaking horribly and exhausted, my husband suggested I take one of the pills we got from the doctor. I was very hesitant. I didn't have a good feeling about it at all, but finally gave in. I took the little, red pill. Within 30 minutes I was shaking worse than ever before and, in addition, was crying and felt out of control emotionally. My husband took me to the ER and they gave me IV ativan, saying I was having an anxiety attack and sent me home. Looking back, I was having a huge allergy reaction to the medication.
 

I went back to my doctor and he didn't know what to do. I recall him saying it seemed like I was being poisoned by something. But he didn't know how to help me. He agreed I was very sick but I had no diagnosis. If I had one, he would admit me to the hospital. Without one, the best he could do was admit me to a mental hospital. We didn't feel good about that. Instead, he referred me to another doctor for chelation. But we couldn't do it because I was so sick.
 

This pattern of tremors, migraine headaches, muscle aches, exhaustion, nausea, weakness, vertigo, etc. continued through the winter. The only way I could stay sane was to take ativan. So, I stayed on it, but that turned out to be a really bad idea. Yes, it got rid of the anxiety but turned my adrenals upside down. The severity of my symptoms was sky rocketing and new symptoms were appearing daily. The nerves in my hands and feet began burn and hurt all the time. Soon, that graduated to burning nerves down both arms, legs and up into my head and face. I also started having diarrhea and lost weight at a tremendous pace.
 

Chapter 4: Sick and Sicker
In April 2004 I became totally dysfunctional. I could hardly get out of bed. It would take all my energy just to take a shower. I couldn't do anything. I was so brain foggy and weak I couldn't cook, clean, or take care of my children. I had to call my husband and have him instruct me over the phone how to get a glass of water for myself. I also remember distinctly calling him and asking him how to make a hard boiled egg for my, now, 4 year old special needs daughter #2 who was crying for an egg. I recall the instructions included things like where to find the pan, how to turn on the water faucet, which knob would turn on the correct burner, etc. I honestly thought I had lost my brain.
 

At this point, all I could do was manage to get to the bathroom and lay in bed all day. I could hardly make it the 30 feet out to the living room and then would have to sit or lay in the Lazy Boy for an hour or two before I could walk any further. I got about 1-2 hrs of sleep a night, had horrible anxiety, muscle pain, tremors, vertigo, nausea, headaches, tunnel vision, brain fog, burning in my hands, feet, head and face, weight loss, diarrhea, muscle weakness, and many other symptoms.
 

Mid-April, my Mom came to help me with the girls while my husband went out of town on business. She ended up staying for 7 months. During this time she took me to specialty clinics in California and Mexico. They didn't find anything wrong except candida overgrowth. My gut feeling said there was no way my horrible symptoms were caused by candida alone. No way. I'd been on an anti-candida diet for over a year and had studied a lot about it. The root cause was not candida.
 

After returning home, my Mom took care of my children, hauled me to doctors appointments, I.V. sessions, hyperbaric treatments, and cranial sacral work.

My IVs started out with just vitamin C and glutathione. They really helped calm my symptoms. Amazingly, the hyperbarics healed the nerves in my hands, feet, head and face. I still had a little tingling but the pain and burning was gone. I did about 50 dives.
 

My doctors were still clueless as to what was causing all this. They ordered a bone scan, ultrasound, MRIs and lots of blood work. Nothing.

Two separate doctors suspected Lyme and they ran the "regular western blots." They came back negative. Not one band. Well, no wonder -- my immune system was very weak by this point and wasn't able to fight anything.

I had lost 25 lbs -- and was thin to begin with.

Chapter 5: Some Answers and Progress

In July/August 2004, through the hand of God, I found a doctor who was confident I was being poisoned by our new house. He is a brilliant man. He was correct. Blood labs confirmed it. He helped me put air purifiers in place, water filters, and educated me on making my environment cleaner. He got me right in to see a GI doc who found my pancreas was no longer making digestive enzymes. OK, so 2 answers! 
 

I started taking prescription pancreatic enzymes. My GI doctor assured me I'd be back up to my normal weight in no time. Despite taking the enzymes, I did not gain any weight. The doctor didn't know why. He did more tests and although my intestines looked good, he suspected Celiac Disease. Sure enough the blood tests checking for genetic markers for Celiac came back psitive. I also had an allergy to gluten. The doctor said he had seen this in a few cases and felt that my immune system was so compromised it could not launch an attack in my intestines. He told me to go off of gluten for the rest of my life. I did.
 

Simultaneously, I was going to two different Naturalpathic Doctors. The first, young and fresh out of medical school and determined to keep me alive although baffled at what was causing all of this. He is caring and dedicated to helping his patients. The second, a lady, experienced and confident. Also determined to get me well but equally baffled at the cause of my ever-growing multitude of symptoms.
 

The lady ND, (yes, all these doctors knew about each other) began giving me different IV meds to see if we could find something to help the headaches, brain swelling symptoms, pain, etc. I couldn't take any supplements orally at this point or I would have diarrhea. So she ordered a PICC line. We tried many things: nutritional I.V.s, IV homeopathics, and a couple of IV antibiotics. They all seemed to effect me horribly. Some worse than others. Finally, she tried IV Flagyl. I felt horrible for 3-4 days afterward and then would feel much better for 3-4 days. After that I would start going down hill again. She started giving me 1 bag of IV Flagyl a week and finally after about 4-5 weeks I had relief from my brain symptoms which included burning and pressure from swelling in the back of my head and brain stem as well as horrible spike headaches that moved all over the top of my head. YAY! I also felt calmer.
 

Although she found success with the Flagyl, that was all. And she had no idea why. She couldn't understand where all the IV nutrients were going and why I couldn't gain weight. I recall her words almost exactly, “If you are not well after all the things I've tried, you are not physically sick. This is all coming from your brain as miscommunication. I have done all I can to help you.”

Basically, she told me I was crazy. Either that or it was all in my head.
 

I asked her to call a doctor closer to my home and see if he would continue to administer the IV Flagyl and he agreed. 
 

Starting in January 2005, my other Naturalpathic Doctor developed a detox IV to help my body dump the chemicals from my new house. It worked. Gradually, I became functional again. By March, I started sleeping. The brain fog went away. My tremors stopped. The was nausea gone. My muscle aches decreased. I had energy. YAY! So the chemical poisoning was a large piece of the puzzle.

Between the IV Flagyl and my detox IV, life was MUCH better. Hooray! Little did we know these things were helping with lyme and co-infections as well.
 

By September 2005, it became quite clear that I had developed a huge allergy for the IV Flagyl and could no longer tolerate it. I started to backslide.
 

Even though I had made significant progress, I was still sick. I couldn't gain weight even though I was taking the digestive enzyme and still had horrible anxiety as well as some muscle weakness. I was on a rotation diet but reacted to every food I ate. My weight dropped to 109 by fall 2005. I am 5' 7 ½” tall.
 

Chapter 6: TPN ~ IV Nutrition

At the suggestion of the doctor who diagnosed me with chemical poisoning, in Nov 2005 I came to Dallas, TX to see a specialist for chemical poisoning. He explained thhat I was a “universal reactor” meaning I was sensitive to pretty much everything: foods, pollens, molds, chemicals, and even my own hormones, neurotransmitter and nutrients that made up my body. By doing allergy testing, I learned that some reactions were a true allergy and others were caused by dysautonomia. He helped me design a rotation diet of foods I could tolerate with the help of food antigens (allergy shots). I also started antigens for molds. I returned home in Dec 2005. 
 

At this time, the doctor administering the IV Flagyl started learning about Lyme Disease. He discovered that IV Flagyl was used to treat Lyme and after the huge success we'd had with it, he wanted to test me for it. He knew of a specialty lab in California that only did testing for Lyme. He had used this lab to help his diagnose a couple other “difficult cases.” Their tests came back positive for Lyme when the regular Western Blot did not. He ordered the tests mid January 2006.
My weight continued to drop. By early Feb 2006 I weighed 99 lbs. I came back to Dallas and the doctor there put me on TPN (total parenteral nutrition or IV nutrition) to heal my gut and finish detoxing the chemicals. That would calm down my immune system and my body would finish healing. He gave me an estimate I'd be on it for 6 months to 2 years. Most TPN patients have a central line catheter in their chest. Since I already had a PICC line in my arm, we opted to use that instead.
 

Near the end of February, I got a phone call from the doctor in Utah saying my Lyme test came back and it was positive for Lyme and Ehrlichia. He told me that when I got back to Utah, give him a call and we'd go to work on it. Well, he failed to explain what a HUGE role Lyme and co-infections were playing in my illness. Looking back, I wonder why I didn't research this further on my own. The “old me” would have. Well, I was just too sick. I could hardly walk let alone think.

After starting on the IV nutrition, I began to feel much better. I had ener
gy and strength again. What a wonderful feeling! Very slowly, I began to feel better in other ways, too. My immune system seemed stronger and I could think better.
 

Although I was feeling better and gaining weight, it was very difficult being so far away from my family in Utah. Thankfully, Angel Flight pilots flew me back and forth from Dallas to Salt Lake City 4 times so I could have week long visits with my husband and daughters. I am so grateful for their willingness to donate their time, energy and aircraft to fly me home.
 

In September 2006, I had my first sepsis infection and was on very high powered IV antibiotics for 2 weeks. The infection was brought under control very quickly. I was allergic to the antibiotic so the doctor put me on an antigen for it. It kept me from reacting. The longer I was on the antibiotic, the better I felt. I hadn't felt this good in years – since I got pregnant with Alyssa in 1998. So much better in fact that I dreaded going off the antibiotic. I remember wishing I could stay on them long term. But that just wasn't possible. The doctor was able to keep me from reacting to it only by having me adjust my antigen every couple of days. By the end of the 14 days, I was highly reactive to it.

I felt good for about 6 weeks after the antibiotic was discontinued then gradually, began to feel sick again. Muscle pain returned as well as brain fog, fevers, anxiety, head pressure, muscle pain, etc.


By October 2006 our family had moved to Texas. We found a home and renovated it to be as chemical free as possible. It has all tile and wood floors and air and water filtration systems. In thekitche, bathroom and closets, there is metal shelcing in place of the standard cabinets and press board shelving.
I was still on IV nutrition and had to stay close to the clinic in Dallas so they could modify my it as necessary depending on lab work and how I was feeling. I was still taking antigens for pollens and molds, and doing sauna every day to stay “stable” in a very loose sense of the word. At this point I was functional but was VERY chemically sensitive and still could not eat and absorb nutrition. I felt unwell most of the time and a long list of symptoms continued. The IV did it's job when it came to detoxing the chemicals that were leftover from the new house poisoning and my immune system began to recover. So much in fact, that my sensitivities were worsening. This is typical when healing from a long term exposure. But why were my intestines still not functioning?

I had visited other doctors in hopes of finding out what the root cause of the malnutrition and inability to assimilate nutrition through my intestines but to no avail.

Chapter 7: It Just Can't Get Any Worse – or Can It?

Fast forward to June 2007, I had a bad sepsis infection, again, which this go around also included a large blood clot in my vein at the catheter insertion point. I had to have my PICC line pulled and was hospitalized while on high powered antibiotics. My doctor urged me to go ahead and eat and we'd keep an eye on things. Once again, my intestines could not assimilate nutrition from my food – enzymes or not. I slowly went down hill losing 1-2 pounds a week.
 

By December 2007 I was in worse shape than ever. I was down to 95 lbs. He started IV nutrition again. This time he ordered a central line catheter to be surgically inserted in my chest. The surgery went well but the surgeon only used local anesthesia. It is no fun being awake when something is being threaded through a muscle!
 

When he restarted the TPN, my body hated it -- and I mean HATED it. Even with an allergy shot for it, I couldn't tolerate it. My sensitivity to it escalated higher and higher every day. But what choice did I have? The TPN gave me horrible symptoms and such bad anxiety that my increased metabolic rate burned up the calories faster than I could assimilate them.

By this point I had come to a sort of "peace" that I might not survive. I wanted to live -- did NOT want to leave my husband as a single parent of 2 beautiful girls. One with special needs. But I was out of ideas. So was everyone else.
 

Chapter 8: The Lyme Connection

One day at church, my husband was talking with a lady who has Lyme Disease. She asked him some questions about me. Had I ever been tested for Lyme? He told her I had and the test was positive. She stressed that LYME and co-infections were the cause of all of this. It had devastated her life. She said my “cluster of symptoms” was very indicative of Lyme. She also explained that most doctors do not know about Lyme and how horrible it can be. It is the “great imitator” and can cause all kinds of symptoms in all parts of the body.
 

OK, so maybe we DID have all the answers. Just no one had explained these facts to us.

Our friend told us about the Igenex test and the CD-57. I had them done right away.

The test came back with 1 positive band and 2 weak positive bands. The PCR was positive! That meant they found the lyme spirochete in my blood. I also tested positive for Ehrlichia. My CD-57 was '7' which was very low. This is a test for the number of killer cells that directly attack lyme.

After discussing the results, my friend told me she was pretty sure I had lyme. She explained about lyme literate doctors (LLMDs) and how they are the best at treating tickborne infections. She suggested I get to one as quickly as possible. I had no clue how to find one. I was so sick I couldn't figure it out but had one thought: Since LLMDs often do IV antibiotics, I called my pharmacist at the infusion company that was making my IV nutrition. He gave me the name of a doctor who treated Lyme. I called his office right then and made an appointment.

As near as I can figure, my LLMD was doctor #32.

In January 2008, I walked into his office. All 90 lbs of me. I was on IV nutrition and carried my bottle around with me an a canvas bag. I was very weak and had a long list of symptoms. I was literally, on my “last leg.” With my test results, symptom list and history in hand I felt somewhat hopeful. But I didn't want to get too excited. All my other "leads" had been dead ends. What if this one was too?
 

He looked at my tests and symptom lists. Then looked at me and said, "I have no doubt you have late stage Lyme Disease. No doubt.” 
 

I remember feeling relieved but overwhelmed at the same time. And still wondering if I would survive.

He spent a very long time with me going over my history and symptoms with a fine-tooth comb. It turned out that in addition to lyme, there was also ehrlichia, babesia, bartonella, Rocky Mountain Spotted Fever and mycoplasmas. I was way too sick to start treatment. My chances of surviving it were slim. I had to get my nutrition going first. My heart sank. How in the world was I going to do that?!

Fast forward to March 5, 2008. I had sepsis in my central line, and was down to 74 lbs. I was so weak and every fiber of my body hurt so bad it was torture to be alive. Thankfully, I didn't have tremors and could still sleep 5-6 hours a night. If you call getting up 2-3 times a night to change the bedding because of drenching night sweats, sleep.

I was admitted to the hospital. Not only did I have sepsis for the third time, my electrolyte levels and nutritional markers were dangerously low. They started IV antibiotics for the sepsis. By the third day, I began to improve. The internist I was assigned to hooked me up with a GI doc. She spent a lot of time by my bed going over all my labs. She felt she had the answer. All I needed was the digestive enzyme in a form that would dissolve in my acid-less stomach. That's it? REALLY?

So we started the chalky enzyme tablets and liquid oral nutrition. It worked! In 10 days I gained 18 lbs and was released from the hospital on March 28th. WHAT A MIRACLE! The problem with the enzymes the doctor gave me in Utah was that they were hard little pellets inside a capsule. When there's very little stomach acid, they can't dissolve and therefore, no digestion will happen.
Chapter 9: Finally Moving Ahead

With nutrition in hand, I went back to my LLMD in April 2008. He was thrilled and told me I needed 1 year of good nutrition before we could start treating Lyme. OK ... in the meantime we worked on balancing my thyroid, hormones, and vitamin D levels. And getting candida levels down in my gut. I still had lots of muscle pain, incredible fatigue and a laundry list of about 40 symptoms symptoms. Chemical sensitivity which includes food, pollen, mold, and chemical allergies being at the top of the list.

Basically, for a year, I focused on bringing up my thyroid, vitamin D and gaining weight. It worked. With the help of food antigens and a rotation diet, I gained way beyond my "regular weight" to 160 lbs. My fatigue and many other symptoms gradually went away. I still had muscle pain, headaches, severe chemical sensitivity, neck pain, medium-sized night sweats, anxiety, and about 20 more symptoms.

I'm not sure if you know much about chemical sensitivity, but it is truly nightmarish. Due to toxin overload and other factors, the immune system attacks pretty much everything: foods, pollens, molds, chemicals, and even the very hormones and nutrients in your own body.
 

In Feb 2009, it became very clear that I had to do something different to treat my allergies. My food and other sensitivities were getting worse instead of better. The antigens I had been taking for 3 years were not retraining my immune system as we'd hoped they would.
 

In April 2009, I started an allergy treatment called N.A.E.T. It rewires the body and immune system to respond appropriately to things again. It is working! I have terrible pollen allergies. They usually cause me to have sinus and ear infections as well as diarrhea, migraine headaches, nausea, anxiety, insomnia, fevers, muscle pain, and neuropathy. Thanks to NAET, I had my very first fall without one single ragweed symptom! That is a miracle!! We have also treated on infections so now my immune system responds appropriately by killing them instead of reacting to them or trying to store them as a toxin. Treating on various pollens, molds, neurotransmitters, cortisol, hormones, and peptides have allowed me to make huge progress in the last year. I am so excited! My immune and autonomic nervous systems still need a lot of re-training. This is being accomplished one step at a time.

Chapter 10: My Current Healing Adventure

In the fall of 2009, my LLMD said my body was strong enough to begin treating lyme and co-infections. I am seeing even more progress as my body is relieved of these infections that produce such a large amount of neurotoxins. Care is being taken to kill the infections slowly enough so my body can get rid of the toxic die off.
 

My residual muscle pain disappeared. Most of the anxiety has resolved. That is cause for celebration! I had often wondered if I would ever be free of it. Yes! I will be!! What a relief. Now, the only time I experience “jittery-ness” or “anxiety” is if I have a chemical or pollen exposure. I've also noticed that I can gain weight easier. Now, I don't need any extra weight, though. Ha! But it's always good to have a few extra pounds on board.

As of May 2010, I am still at the point where my home is the only place I can really 'be.' I can tolerate going into one grocery store and 3 doctors offices for short periods of time. That is it. Whenever I go out of the house, I have to wear a mask. I really cannot be around other people because of their detergents, fabric softeners, lotions, hair spray, shampoo, etc. I get very sick from those things. When I say very sick, I have brain inflammation, migraine headaches, muscle weakness, dizziness, tremors, swollen eyes, anxiety, swollen lips, blurred vision, muscle pain, etc. You get the idea. Antihistamines are worthless.
 

Chapter 12: Reflections

Recently, after looking back over my old, original Lyme test from January 2006, we discovered I have more than one strain of borrelia: borrelia garinii and borrelia burgdorferi. Gosh, what a discovery that was!

My husband has also been diagnosed with lyme. Both of my daughters have congenital lyme.

I am not sure when or where I got Lyme Disease. My history strongly indicates that I got it within months of when my husband and I were married in 1990. He grew up in Nebraska and had tick bites there as a child. He's had knee and hip pain for as long as he can remember. He thought everyone felt that way.
 

But who knows? I grew up in Eastern Washington State and ticks were unheard of in my hometown area during my childhood. Then, I lived in Hawaii for 6 years, then in Texas for 4 and to Utah for 10. No clue. I probably had 600 mosquito bites while living in Hawaii and it can be transmitted that way.

All that matters is we finally know what is causing the craziness and I am healing.

I thank the Lord each and every day for my life. Only through a miracle He brought to pass am I still here on earth. He sustained me through my darkest nights and carried me when I couldn't bear to go on any longer. Thank you to all of you who prayed on my behalf. I thank my dear husband for staying by my side through all the craziness. I thank my wonderful family for being there for me in so many ways. Thank you to the caring doctors who went many extra miles to help me because they believed I was truly physically ill even though they couldn't find out why.

Now, I see life through a different set of "eyes" than I did in the years prior to my health struggles. These eyes are focused clearly and can see what is important and what is not. Often, it is the small and simple things that are really the most important.