Facebook Pixel

Lyme Disease: To Eradicate It, We Must Fully Identify It

By HERWriter
Rate This
Lyme Disease related image

What we don't know about Lyme disease can hurt us. In fact, what we don't know can lead to disaster.

Lyme, often called "The Great Imitator", flaunts itself in a myriad of different guises, masquerading as other illnesses. Lyme disease has been misdiagnosed as autism, amyotrophic lateral sclerosis, bipolar disorder, Chronic Fatigue Syndrome and depression.

It's passed itself off as dementia, fibromyalgia, Gulf War syndrome, lupus and multiple sclerosis. It's been mistaken for obsessive compulsive disorder, Parkinsons' disease, rheumatoid arthritis and schizophrenia.

In actuality it's an infection transmitted by ticks carrying the bacterium Borrelia burgdorferi, the corkscrew-shaped spirochete that causes Lyme disease.

The classic Lyme scenario is misleading. Infection isn't always a result of walking in the woods. Sufferers aren't always aware of a tick bite and, when they are, the bite doesn't always leave a bull's eye rash.

Monday (who asked that her last name not be used) is a Lyme sufferer in California, where people aren't "supposed" to get Lyme. Monday says she and her siblings were born with it, infected pre-birth by their mother who later died of undiagnosed chronic Lyme. She says she then passed it on to her own daughter in the womb.

It's been believed that deer ticks carrying Borrelia burgdorferi were restricted to the Minnesota woods or the east coast. But the ticks' stomping grounds extend much farther. In the past decade, Lyme-laden ticks have appeared in every state and around the world.

There are five subspecies of Borrelia burgdorferi with over 100 strains in the U.S. and 300 strains globally.

Populated areas are not exempt. And deer are not the only accomplices. According to research from the School of Public Health, 71 species of birds carrying black-legged ticks spread Lyme. The journal Frontiers in Ecology and the Environment says almost 60 percent of bird species infect ticks. So do chipmunks, mice and shrews.

Lonestar ticks of the Pacific coast also carry Borrelia burgdorferi.

And Borrelia burgdorferi isn't the only infectious agent these ticks carry. Anapamosis, babesia, bartonella and ehrlichia are co-infections which need simultaneous treatment for a chance at full recovery.

Less than half of all Lyme patients remember a tick bite, or display a single erythema migrans (EM or "bull's eye") rash. In fact, a wide range of rashes can appear, from multiple, to flat, to raised, to blistering. A rash can look like a spider bite, cellulitis or ringworm. Some people have no rash at all.

Sue Jackson of Wilmington, Delaware, figures she caught Lyme the old-fashioned way, camping. But she never saw a tick. Nor did she see one when her son Jamie previously contracted Lyme.

Sue has battled Chronic Fatigue Syndrome since 2002. But in 2008 after a family camping trip, her CFS symptoms worsened, and she experienced new symptoms. Pain in her knees made her think of Lyme disease, because her 16-year-old son Jamie had severe knee pain during two bouts of Lyme.

Jamie tested positive for Lyme in 2003, after flu symptoms and knee pain, and went on amoxicillin. Within months he was symptom-free. In 2004, Jamie contracted Chronic Fatigue Syndrome but had no sign of Lyme. CFS treatments helped. But in 2007 Jamie again tested positive for Lyme, improving somewhat on doxycycline.

In 2009, Jamie had lines like stretch marks appear on his back and pain in the soles of his feet. Bartonella, a co-infection, can cause these types of marks, foot pain, headaches and light sensitivity. Jamie tested positive for Lyme and babesiosis, another co-infection, giving him a diagnosis of three tick-borne infections.

Sue said, "Pay attention to your own instincts. If you feel something is wrong or different and your doctor says it’s nothing, go see another doctor. In Jamie’s case, we knew his symptoms perfectly matched those of bartonella, based on our internet research. The doctor’s explanation of stretch marks from growth just didn’t make sense – Jamie has never been overweight and grew at a fairly normal rate. Plus they exactly matched the photos we found online of bart rashes. You have to be your own (or your child’s) advocate."

Don't focus solely on the bull's eye. Watch for symptoms like headaches, stiff neck, sleep disturbance and cognitive problems. Other symptoms are hyperacusis (severe hypersensitivity to sounds), lightheadedness, numbness and tingling, photosensitivity (hypersensitivity to light), tinnitis ("ringing in the ears") and twitching muscles. Effects on the nervous system can cause anxiety, depression, mood swings and panic attacks.

There are two approaches to treatment. Antibiotic and natural protocols differ widely, but patients improve on them both.

The International Lyme and Associated Diseases Society (ILADS) advocates using antibiotics. ILADS cautions that short courses won't eradicate Borrelia burgdorferi. ILADS recommends prolonged treatment because consequences of unresolved Lyme are more devastating than the consequences of long-term antibiotic treatment.

According to ILADS about 25 percent of those with acute culture-proven Lyme disease remain seronegative (showing a false negative) on serial Western blot sampling. The Western blot identifies Lyme antibodies, and detects chronic Lyme infection.

Diagnosis of the Western blot should be performed by a laboratory like Igenex that specializes in Lyme, and that reads and reports all bands related to Borrelia burgdorferi.

The Centers for Disease Control and Prevention (CDC) eliminated the reading of Bands 31 and 34. However these bands are essential to identify Borrelia burgdorferi infection.

The CDC surveillance criteria for Lyme were created to study factors affecting the health of different populations. The CDC website says these were never intended as diagnostic criteria. They were never meant to fully define Lyme.

Sue's Western blot test had come back negative. She took the antibiotic doxycycline to determine if she had Lyme. Her symptoms improved, then worsened, which is a herx reaction that occurs when toxins are released in the healing process.

Sue knew she needed a Lyme specialist and contacted Sue Driver, founder and leader of Delaware's Lyme Support Network, and a Lyme sufferer herself. With Driver's help she found Dr. Steven Streit in New Jersey.

Streit ran tests for Lyme and co-infections through Igenex. Sue tested negative except for one positive band for Lyme. But Streit took her symptoms and her response to doxycycline as a Lyme diagnosis.

Sue is on her fourth round of doxycycline. "My Lyme doctor still feels optimistic that I will eventually get rid of Lyme completely," she said.

"At my last visit, he said it seems I’m at a plateau in my treatment, so he recommended another supplement (a homeopathic remedy) that he thinks will help to draw the Lyme out into my bloodstream so the doxy can get to it better."

Sue urges anyone who may have Lyme to seek referrals to Lyme specialists immediately. "Get tested through Igenex – make sure that all co-infections are included. Educate yourself; read the diagnosis and treatment guidelines at ILADS."

Monday always knew something was wrong. But it was years before she knew what it was. She eventually found a doctor who said, "It sounds like you have Lyme."

As Monday learned about Lyme, "everything finally made sense". She was diagnosed in January 2009 at the age of 59, after being sick and seeing doctors without success most of her life.

She said, "Even the most loving, caring doctor is unaware. If they don't see a bulls-eye rash they say it can't be Lyme."

Monday takes the natural approach. She's seeing a naturopath and a family physician who is board-certified by the American Board of Holistic Medicine. She said they saved her life through a combination of homeopathic, naturopathic and western treatments.

She uses herbs, tinctures and other naturopathic remedies. She takes vitamins, minerals, probiotics and hormones. She's utilized plant stem cell therapy and homeopathic remedies. Monday's natural protocol focuses on building up the terrain of her immune system and eliminating toxins. Her body's defenses are strengthened so they can take on Lyme and co-infections, and win.

She said, "There is hope. You get diagnosed. It's a very slow process and you have to be patient, but you have to hope."

Monday rarely leaves the house. She's still partially bedridden, and still occasionally needs oxygen.

Monday said, "You have to change the way you think about living. If you're not doing something you're worthless. That's what I used to think. I went into deep depression. I had to change the way I thought . Be thankful for what you can do. It's a radical change."

She can't walk around the block yet, but she can go part way. This is enormous improvement, since a year or so ago she couldn't get out of bed.

"The loss has been unbelievable. I made a six figure income, and went down to zero. I couldn't get out of bed to go to the bathroom."

Monday's first husband left her and their daughter. "I had no idea how I was going to feed her."

She has remarried, to a supportive and nurturing man named Walt. "Without my husband, I don't know if I would have survived."

Walt encourages all those suffering with Lyme, "Be open to alternative ideas and alternative treatments. Other civilizations have existed far longer than we've had modern medicine."


Treatment Guidelines

Basic Information about Lyme Disease

Looking at Lyme Disease

Visit Jody's website and blog at http://www.ncubator.ca and http://ncubator.ca/blogger

Add a Comment8 Comments


Hi Anonymous,
I am sorry to hear that your mother-in-law is so ill with Lyme disease that she is hospitalized. You can feel helpless when a loved one is suffering and you cannot "fix it". She must be receiving intravenous antibiotics to fight the infection and any other therapies depending on her symptoms. Just being there, by her bedside, offering comfort, conversation and love is the best medicine you can give her. I will keep her in my prayers, praying for a complete recovery and that she regains her strength.


August 16, 2011 - 4:17pm
EmpowHER Guest

My mother-in-law has just been diagnois with Lyme disease. She has been in the hospital for a week now. She is very sick and weak. Is there anything I can do to help her get through this.

August 15, 2011 - 6:12pm
EmpowHER Guest

Bravo Dr. S for taking on this disease and helping people. He is a hero and this will be his legacy.

December 12, 2010 - 9:43am
EmpowHER Guest

Thanks for all the information. I was treated for Lyme back in 1994 after I found the "normal" symptom. However, I was only on amoxicillin for 10 days. About 2 years ago I started getting strange pains. Now I am being treated for Fibromyalgia. It seems like all of the FM symptoms match many of the L.D. symptoms. I'm now wondering if I'm being treated for the wrong thing. L.D. can be diagnosed via blood test - but FM is a clinical diagnosis. Time to find a doctor to run some blood tests!

October 23, 2010 - 6:20pm
EmpowHER Guest

I will post your link on our Lyme Disease Facebook group, very good article, very complete, thank you very much.
With your permission I would add that the main problem when treating Lyme disease is that most Doctors in the Us ignore or do not know how to treat against parasites so antibiotic treatments are never going to be enough - you cannot recover from a malaria no matter how many Doxy or Rocephin you get! - Babesia is a bigger ans stronger parasite "malaria like"; Borrelia is a smart "bacteria malaria like" too; and Bartonella is another kind of bug that destroys every cell and loves to feed out from cardiovascular cells, brain cells and glands - lymphatic system affected too? So this is not just about having multiple symptoms, this is about having multiple bugs causing multiple damage, and as you well said they must be treated simultaneously. Again my point is, Drs. here deny the existence of parasites so they won't give a Bactrim, Flagyl or an anti-malarial, just because this is the US? I have been using Ivermectin and my Lymie life is changed, I'm finally recovering, hope I didn't get it too late. Ivermectin is the best antihelmintic ever created but it is not even sold in the US; the version here is called "Stomectol" and comes in just three expensive pills... I get the one in a bottle and the dose is in drops according to kilograms of weight, given weekly for a year or more, not a single dose and then die from what they call here "chronic Lyme".
Yes, we need to know what is all that this illness carry, what bugs and how to treat them. Many speak about viruses and Erlichia which you didn't mention here, but you spoke about "Anaplasmosis" which is the "rickettsial parasite'? right? more to treat, no idea how!

Thank you very much.


August 26, 2010 - 10:37pm
HERWriter (reply to Anonymous)

Hi M.P.J.

Thanks for the link. And thanks for the additional information.

I appreciate your sharing some of your experience here. When so much of the medical world has been inadequate to tackle Lyme, the support and information sharing amongst chronic sufferers helps keep the whole Lyme community stronger and better equipped for the fight.

Thanks for writing.

August 27, 2010 - 8:47am
EmpowHER Guest

Hi Jody
Renee here from lymeliving.blogspot.com ...This is such a good article about Lyme Disease. I am so glad you are informing others about this devastating disease. Thank you!!

August 26, 2010 - 11:30am
HERWriter (reply to Anonymous)

Glad to do it, Renee.

Thanks for writing.

August 26, 2010 - 6:52pm
Enter the characters shown in the image.
By submitting this form, you agree to EmpowHER's terms of service and privacy policy
Add a Comment

We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

Lyme Disease

Get Email Updates

Health Newsletter

Receive the latest and greatest in women's health and wellness from EmpowHER - for free!