Sign in with Google+ Sign in with LinkedIn
Igenex

Lyme Book Excerpt - The Ghost Caller

You may know that Prednisone is contraindicated when you have Lyme. Ever wondered what would happen if you took it anyway? Before my test results had come back from IGeneX, I was prescribed steroids to stop a spreading rash.

When I finally found a doctor educated about Lyme, he expressed deep concern when I told him about the steroids, which had been prescribed by an IDSA doctor. They had replicated the Lyme bacteria, driven it into my organs and across the barrier into my brain.

The day I started on Prednisone, I began to experience auditory hallucinations--the kind you hear, not the kind you see. I also had kinesthetic hallucinations: I would wake up from a nap convinced I had a raging fever. But the thermometer always read 98.6.

The steroids took a big toll, emotionally as well as physically. The irony was, they didn't even stop the rash completely. So in my fog, I reasoned that I had to keep taking them—follow the doctor's orders. By the time I mustered the guts to disobey the doctor and stop taking it, the damage was done. I couldn't walk, talk, or think.

The following is an excerpt from my ebook, available soon:

So, I took the Prednisone. And life as I knew it started to disintegrate. As the undetected Lyme bacteria began destroying my immune system, it collided with the corticosteroids. I began to learn what it meant to fall apart.

I was in the kitchen when the phone rang. I answered. Wrong number. It rang again; I picked it up. Again, a little girl on the other end asked for someone whose name I did not know. 

Again, I told her she had the wrong number.

But the phone kept ringing. 

Each time, I picked it up and said hello. As soon as I set it down, it would ring again. To the same exact little girl I said, “sorry, wrong number.”

By the third time, I was angry and my voice was rising in pitch. “Please stop calling me,” I said. “Wrong number! Which word do you not understand?”

By then I was fuming, staring at the phone like a snake at a mouse. This was ludicrous. No normal person would keep on calling over and over, thinking she was going to get it right eventually. Isn’t that the definition of insanity? Doing the same thing repeatedly, expecting different results?

When the phone rang again, I flew into a rage. 

From another part of the house, Evan heard me yelling into the phone. He appeared in the doorway. My heart was beating fast. I wanted to hit something. I slammed the phone down hard.

“What's going on out here?” he asked.

I shot him a look to kill. “Some stupid moron will not stop calling! She’s got the wrong number.” 

He looked at me. “I didn’t hear the phone ring. Not once.”

“You were in the shower!”

“I was in the bath. I would have heard the phone,” he said. 

I am outraged at his bullheadedness. “Well, if it hasn’t been ringing, what are you saying? I’m crazy?” 

My head wobbled on my neck and I collapsed into a chair, choking back tears. I had tremors and a stammer.

Evan headed for the door. “Why don’t you call your mom,” he said, before pulling it shut behind him.


Comments

Best test for Lyme & Co-infections

Best test for Lyme co-infections
Should Lyme patients be concerned about Bartonella? Commonly associated with Cat Scratch Disease (CSD), this bacteria is also commonly included in the toxic waste dumped into the human bloodstream via a tick or flea bite.

If you have a diagnosis of Lyme disease, you should be aware that you may also be dealing with common co-infections such as Babesiosis, Ehrlichsiosis, or Bartonellosis. Get tested and treated for these additional inflictions, which can cause symptoms and impact the immune-system.

What are some of the problems associated with co-infections? Well, it begins with not even knowing that you might have them. Not all diagnostics labs are created equal. We admire the work that is being done at IGeneX. Here are some of the reasons why.

Same old Lyme-testing trouble
Nick S. Harris, PhD., of IGeneX laboratory in Palo Alto, CA, cautions that due to many factors, Lyme disease remains very complicated to correctly diagnose. Among the top reasons stated, infection does not show up the same in everybody. People all react differently. In addition, seralogical (blood) tests yield unreliable results because the Lyme bacteria is known for its stealth activity and it likes to hide. Lyme is weird (you heard it here). Even in a person with active disease, the bacteria are not always likely to be detectable in the blood. On top of that, antibodies may only be present for a short amount of time, making testing for Lyme bacterial infection a hit-and-miss affair at best.

Standard tests frequently flunk
If you go to your IDSA doctor, assuming you can convince them to test you for Lyme, he or she will give you the standard ELISA and Western Blot Lyme tests recommended by the CDC. What your doctor may or may not know is that these standard tests often fail to give positive diagnoses to patients, causing a chain of reaction wherein they are not made aware that they should begin proper treatment for the disease.

This frustrating scenario has been going on for years. Decades. Your doctor or doctors might also be smart enough to be paying attention to what many call the Lyme wars. They might recognize that while a positive blood test would be optimal, where Lyme is concerned, a clinical diagnosis is often the only way that doctors can observe your condition.

More sensitive testing required
IGeneX lab offers tests sensitive enough to detect the bacteria. For many Lyme patients, myself included, testing at IGeneX has signified the end of the mystery (do I have Lyme?), and the beginning of recovery.

Dr Harris recommends that “for patients presenting with clinical symptoms of Lyme Disease who test negative by the IgG or IgM Western Blot, the Whole Blood PCR or the LDA/Multiplex PCR Panel on urine may be appropriate. There are physician-developed antibiotic protocols to enhance the sensitivity of the LDA. In addition, there seems to be increased sensitivity of this test during the start of menses.”

IGeneX tests for Co-infections
IGeneX lab also offers tests for other tick-borne illnesses. The following info is from Dr Harris on their website:

“The tests are IFA (fluorescent antibody) or direct tests by PCR. In the case of
Babesia, FISH (fluorescent in situ hybridization) is also available. The FISH test detects the ribosomal RNA of the Babesia parasites directly on air-dried blood smears. This test is highly specific for Babesia, unlike the standard test, the geimsa stain smear, which cannot differentiate between malaria parasites and Babesia.”

Babesiosis Tests
B. Microti and/or WA-1 IgG/IgM Antibody Babesia and/or Babesia WA-1 PCR Babesia FISH (RNA)

Ehrlichiosis Tests
Human Granulocytic Ehrlichia IgG/IgM Antibody Human Granulocytic Ehrlichia PCR Human Monocytic Ehrlichia IgG/IgM AntibodyHuman Monocytic Ehrlichia PCR

Bartonella Tests
Bartonella henselae PCR with Whole Blood


New Bartonella Test
Across the country, another diagnostics lab has been working on a new test for Bartonella, and they want you to know about it so you can request it from your doctor. Galaxy Diagnostics in Research Triangle Park, NC, claims it has developed an even more sensitive test for Bartonella, using state-of-the-art molecular detection.

According to their literature, twenty-eight species of Bartonella have been identified so far, and new species are found every year.


Added cost, but better long-term health prognosis
Of course, testing for co-infections will likely add cost to your treatment plan. But it is important to know what obstacles you could be facing on the road back to good health.

Comments

Lyme Success Story! Treating every angle

Not too long ago, Jerry was preoccupied with his professional responsibilities and other commitments. Resolutely running the treadmill, he pursued his multiple roles as a husband, father and self-described Type A quite unconsciously.  But around May of 2010, he began “to feel really crummy.”  Not merely tired from work, he was exhausted. He ached all over, his glands were swollen and painful, he suffered headaches and disturbing muscle twitches.

At first he brushed it off as a bad flu and continued on his daily routines. He did not have a bull’s eye rash.  But then his symptoms took a turn for the worse, the muscle twitches increased and he felt he was losing control. He decided it was time to get tested for Lyme. The result was negative. However, test results were positive for an infection that typically accompanies Lyme: Ehrlichia. Antibiotic treatment began but he continued to feel worse, even taking Doxycycline. At that point, he took the initiative to search out a doctor in Minnesota who specialized in Lyme and could really help him.

Jerry found Dr. Karen Vrchota. She sent his blood to be tested by IGenEx, in Palo Alto, California. In addition to three co-infections, Ehrlichia, Bartonella and Babesia, Jerry was positively diagnosed with Lyme.  She recommended further treatment including some of Dr. Cowden’s protocol, such as Samento, Burbur and Parsley tinctures.

As Jerry worked with Dr. Vrchota, he branched out to discover many more proactive methods that would allow him to feel in charge of his own therapy. He realized that truly healing from Lyme disease demanded coming at it from every angle, not simply by taking antibiotics and herbal medicines. At the suggestion of Dr. Cowden, he focused on getting rid of the mercury, aluminum and other heavy metal poisons and toxins in his system. He adopted a new approach to exercise and nutrition. Following the advice of Dr. Burrascano, he began cardio as well as strength training exercises. He talks about the difference he began to feel as he focused on heating up the blood and getting it flowing. Spirochetes hate heat and cannot survive it. Therefore, physical exercise is super important to include in a Lyme disease protocol.

In his search for wellness, he has been seeking advice from experts in many fields, psychological as well as physical, spiritual as well as emotional. He feels confident that he’s now about 95% healed, and is eager to reach out and help others facing similar health challenges.

Over the past couple years, Lyme disease has become one of Jerry’s greatest teachers. He has rediscovered the simple joys -- tossing a ball with his kids, slowing down each day to practice mindfulness meditation and noticing life’s small blessings.

Hearing him tell his story, it’s easy to see that this once-Type-A person has a loving and generous heart.  You can sense that something in his nature has softened and profoundly changed and evolved.  He talked movingly about how he is now deeply committed to “giving something back,” and I’m really pleased to be able to share our recent conversation in our Lyme Success Stories series. You’ll hear him discuss the challenges he faced in getting properly diagnosed, his treatments, protocols, exercise routines, and the doctors and other experts who are guiding him as he turns his life around.  

Jerry has redefined the meaning of success in his life and feels endless gratitude for the things we tend to take too easily for granted. By approaching Lyme disease comprehensively and from every angle, his healing is happening on many levels of his life. Yours can too.

For additional information on healing Lyme from every angle, see Beat Lyme!

Join to listen to the interview.
Comments

Trust your doctor. Or not?

Anyone in the medical profession deserves heartfelt respect. Most of us honor these men and women for serving humanity in the most fundamental way: Caring for the sick. But what do you do when your own doctor, the saint with a compassionate heart, won't listen, and you know something is wrong? This frustrating experience is common among people with Lyme disease.

Many people, doctors included, believe that a bull's eye rash is the definitive Lyme symptom. In fact, up to two-thirds of people infected with Lyme never develop a rash. When I say doctors I mean doctors from all fields. That includes GPs, Infectious Disease specialists, Neurologists, Dermatologists, Hematologists, Cardiologists, you name it.

  • It is a mistake to assume that your family doctor (or your dentist, for that matter) knows anything about Lyme disease or common Lyme co-infections, such as Babesia, Bartonella, or Ehrlichia. They will most likely tell you with some degree of confidence that Lyme is rare, hard to get, easy to cure, or that it simply doesn't exist where you live. This is old thinking, but you may be surprised how many people (doctors too) are not educated about Lyme, yet possess strong opinions about it.

Tick bites can occur without anyone noticing. They do not hurt. You may have never seen a tick on your skin, or you might have been told the ticks in your region don't carry Lyme. You might remember a tick bite, but you never developed the bull's eye rash, and wrote off the other symptoms as a bad flu, a touch of arthritis, or a passing case of tachycardia.

If you are symptomatic, and have been told that you don't have Lyme but you strongly suspect it, have your blood tested through the IGeneX laboratory. Obtain a second, third, or fourth opinion. Most people who are now successfully overcoming Lyme will tell you they saw 10, 20, 30 doctors or more before they found help.

In my own case, several Infectious Disease doctors I consulted with were quickly convincing themselves that I must have multiple sclerosis. Every cell in body and mind knew with absolute certainty that they were wrong. During that period, I had my blood tested at IGeneX, so I knew that they were wrong. These doctors saw the test results with their own eyes and did not trust them. However, I was in no shape to refute them. At the time I was extremely weak, unable to articulate my thoughts, speak clearly, and was essentially wasted from a horrible full-body rash (not the bull's eye, which actually might have been helpful in terms of their diagnoses).

Prior to my IGeneX test, the expensive dermatologist I consulted had prescribed Prednisone, and taking it (I later learned) was possibly the worst thing I could have done. The steroids explosively multiplied the spirochetes and drove them deeper into my body and brain. Finally I found a naturopath who believed my test results and had treated several patients who had Lyme and co-infections. He was my saving grace. He was hard to find, because I entered this illness naively, believing that all doctors knew best. I had no clue that I'd have to fight them for my life.

You may love and trust your family doc. And indeed, he or she may be saintly and have a heart of gold. But it's your life we're talking about. If your intuition is nagging you to get another opinion, listen to that inner voice. Your intuition is a highly sensitive and intelligent guide, designed to nag for purposes such as this.

The good news is there are educated Lyme doctors who can help you. However, you might have to make an effort to find them. In addition to IGeneX, check out these two new tests, the DNA test and the antigen test.
Comments

What's stressing you?

Stress is believed by many to be a huge contributor of illness. Struggling with Lyme disease symptoms is stressful not only on your physical and mental bodies, but also on your emotions. And to top it off, even your own awareness of the stresses in your life can be a source of anxiety.

I remember when I was told that my Lyme-induced skin rash was nothing but a bad case of eczema. The nurse practitioner I'd gone to for help asked me in-depth questions about my rash, my diet, and my health history. She seemed puzzled that I was not the type who might suffer from eczema. I had never overused antibiotics, my Mediterranean-type diet included fresh greens and did not include sugar or alcohol. I was very much in love with my life-partner and running a small business that satisfied my financial needs, and which gave me time to spend with family and friends.

As I stood to leave, she peered pensively over her glasses at me and tapped her pen against her chin for a second. "You really must do something about whatever is stressing you out so badly," she said.

When I returned a blank look, she threw me a doctorly look and added, "think about it."

On the drive home, I soul-searched, but still couldn't locate a source of stress along the magnitude she was referring to. It wasn't as if I was living in a bubble, I had certainly had my challenges and bumps on the road of life. But at the time, things were going well. As a naturally self-reflective person, I felt a little embarrassed. Out of touch with myself. Was I making myself sick? By the time I pulled into my driveway, I had concluded that there must be something really wrong with me -- mentally and emotionally, not physically.

Months later, when a different doctor had my blood tested at IGeneX and I received a positive diagnosis for the Lyme infection, I felt that odd sense of relief familiar to many people with this disease. The illness, the mysterious symptoms, the long journey to a positive diagnosis, and the diagnosis itself is so hard-fought and hard-won. And finally, the physical and mental stress of treatment itself. It was a little like that old joke about the tombstone engraved with "I TOLD you I was sick!"

If you think stress might be a contributing factor to your illness (or like me, even if you don't), here are 7 things to do to eliminate or reduce tension and anxiety every day.

1. Set strong boundaries.

2. Take time for yourself.

3. Find areas of your life to maintain control.

4. Learn when to say "no, thanks."

5. Surround yourself with supportive and proactive people.

6. Ask for help when you need it.

7. Love yourself.

How do you deal best with the everyday stresses in your life, as you heal from Lyme? Please let me know in the comments. I'd love to hear from you!



Comments