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.
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 . . .
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.
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.
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.
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
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.
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.
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?
Chapter 7: It Just Can't Get Any Worse – or Can It?
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.
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.
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 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.
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.
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.
My husband has also been diagnosed with lyme. Both of my daughters have congenital lyme.
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.