Lyme Disease: The Hidden Epidemic Part 3
In this article:
–Hannah’s Lyme testing results and her Mom and siblings developing problems
–how to test for and diagnose Lyme disease
–extra precautions for those with high tick exposure
–singer Avril Lavigne just reveals she has been suffering from Lyme disease for many months!
–new section on patient profiles (changing names and identifying characteristics) with more about Martha, who I have treated for 23 years & just realized she has Lyme disease, and about the Warners, who all got Lyme disease from multiple tick bites 2 years ago on a trip to Michigan (and baby Nathan acquired the infection from Mom in utero)
I cannot believe that just one year ago I knew almost nothing about Lyme disease. With God and my desire to keep learning and healing, I now clearly see the vast Lyme epidemic. I am working hard to heal and prevent Lyme disease in the midst of the deeply divided medical community between IDSA and ILADS. The persistent or chronic form of Lyme disease is often referred to as “neuroborreliosis”.
Avril Lavigne just revealed she is suffering from Lyme disease (she never remembers an actual bite, which is common, and is unsure when it occurred). She first noticed symptoms of extreme fatigue and sweats (barely able to move or even eat) April 2014 while on tour, and doctors felt it was from tour exhaustion. She did not believe this and after several months of recurrent and increasing symptoms, a friend of hers felt it was Lyme disease. She had many doctors tell her she was crazy to think about Lyme disease, and had several emergency room visits and consultations with multiple specialists. Finally she saw an ILADS Lyme specialist in October 2014, and after many antibiotic courses and changing to an organic, sugar-free, gluten-free, dairy-free diet, she says she is 80% better!
My Journal Entry July, 2014
Anyone can get Lyme disease.
Twelve year old Hannah with her Mom return to go over her IgeneX Lyme test. She complains of muscle cramps off and on (better with water with lemon or baking soda for detox) and an unusual rash which looks like stretch marks on her upper thighs (they are not in the normal stretch mark orientation or spot). Her IgeneX test shows positive IFA at 80 and many IgM and IgG Western blot bands, but not technically CDC or IgeneX positive. Mom herself has noted many symptoms Hannah has, and noted similar symptoms in her other children.
With a mom’s insight, Christina has already made an appointment for Hannah at Washington DC’s Jemseck clinic in early August, and talked with a professional there who recommended starting Hannah on antibiotic doxycycline (a common antibiotic prescribed by dermatologists to treat acne for many years) until she comes for her appointment.
Hannah also went to a highly respected Indianapolis ophthalmologist, who has experience in Lyme patients, for her vision problems. Her exam was normal and he is suspects Lyme disease with her history and symptoms. I talked with him asking if I also should send Hannah to a local infectious disease (ID) doctor and he said, “Don’t send Hannah to an infectious disease doctor. They don’t know anything about Lyme disease!”
I have edited this statement a bit, but that was the gist of it. He is passionate about this lack of knowledge and care for Lyme disease by the medical community who should be up-to-date in this often devastating disease. He proceeded to tell me a terrible story of a child very close to him who was misdiagnosed and mistreated by several top ID doctors and became deathly ill before getting the correct ILADS treatment!
This is why we need to get the attention of the medical community! It is up to us to face the reality of this disease. Healing is possible, but not by denying the comprehensive requirements of diagnosis and treatment for each individual. I start Hannah on doxycycline, do an IgeneX test her mom and siblings, and add to Hannah’s problem list…
Diagnosis – rash, muscle cramps, vision changes, stiffness, recurrent abdominal pain, fever, dyspnea, tachycardia, fluctuating severe fatigue, syncope, bladder pain, leg swelling, food sensitivity; vitamin deficiency
Lyme Laboratory Testing
As noted in my second article on IDSA vs ILADS, the medical community is deeply divided regarding Lyme laboratory testing. Compounding problems are that Lyme bacteria grow very slowly and hide from our immune system, so testing for Lyme disease is inherently very imprecise.
The CDC (Center for Disease Control) recommends a 2 tiered approach for public health surveillance or tracking of Lyme disease (because for tracking purposes they must be 100% certain is a true positive). The CDC has always maintained that Lyme disease is a clinical diagnosis, made after consultation with your own experienced physician or provider.
The 1st test the CDC recommends is the ELISA or IFA tests to detect Borrelia antibodies and has a sensitivity of at best 65%, so it is inaccurate at least 35% of the time. (In contrast the sensitivity of the AIDS HIV test is 95% or higher.)
Then if the ELISA or IFA is positive, the CDC recommends confirming with a Western Blot test that detects antigen bands of the Borrelia bacteria. The most active Lyme-specific Western Blot bands are 18, 23-25, 31, 34, 39, and 83-93. However the 31 and 34 bands are not tested in traditional lab companies Western Blots because for epidemiological purposes only the CDC didn’t test them because they were part of the Lyme vaccine. HOWEVER, the Lyme vaccine was not given to many people and was pulled from the market in the early 2002 because of lawsuits. So since essentially no one has had this vaccine (and it is no longer available), then 31 and 34 should be tested because a positive 31 or 34 is highly indicative of Lyme disease and exposure.
Currently the most accurate and sensitive testing for Lyme disease is done by IGeneX laboratories in California, and their Western Blot includes the 31 and 34 bands (cost is $200-$275 for all except Medicare, which usually covers the cost). They also have other types of Lyme and co-infection testing, such as testing for Lyme bacteria DNA.
As ILADS believes, the diagnosis of Lyme disease is made by an experienced treating, Lyme literate physician or provider. Diagnosis is based upon a person’s clinical picture, with their history and possible exposure coupled with their current symptoms (and lab testing MAY be of benefit).
Dr. Jemsek, Infectious Disease Specialist of Jemsek Specialty Clinic in Washington DC and a member of the IDSA and ILADS, after treating over 2000 patients with Lyme disease usually with multiple antibiotic cycles states on his website, www.jemsekspecialty.com: “Fully one-third or more of all patients with active Lyme infection will test negative with current methods (far more will be undiagnosed employing Lyme disease illiterate MDs). So as much as those of us in Infectious Disease would like a positive laboratory report to comfort us and strive for this to “sooth our souls”, we agree with the CDC that neuroborreliosis (chronic Lyme disease) remains a clinical diagnosis.”
My Journal Entry Early August, 2014
Hannah returns with a small spot on her teeth Mom feels from a few days on the antibiotic doxycycline and some Herxheimer reactions (I will discuss this in my next article!). Mom Christina herself has noticed a downward health spiral, with symptoms that come and go of dizziness, feeling aloof and detached, nausea, general weakness and fatigue, headaches, insomnia, sensory overload, irregular periods, air hunger, noise sensitivity, night sweats, and vision changes. She has been so worried about Hannah, that she has ignored herself until now. Christina is also worried about Hannah’s siblings symptoms because they all have had tick exposure over the years, Isaac age 10 (intermittent but frequent neck pain, headaches, fatigue, worsening school performance and attention problems) and Victoria age 6 (recent tick bite, continued bed wetting which does not run in their family, and joint pains)… I consult with Jemsek clinic in Washington DC, and change Hannah to Zithromax antibiotic, and draw IgeneX Lyme tests on Christina, Isaac, and Victoria.
Hannah diagnoses – rash, muscle cramps, vision changes, stiffness, recurrent abdominal pain, fever, dyspnea, tachycardia, fluctuating severe fatigue, syncope, bladder pain, leg swelling, food sensitivity; vitamin deficiency
Christina diagnoses – dizziness, feeling aloof and detached, nausea, general weakness and fatigue, headaches, insomnia, sensory overload, irregular periods, air hunger, noise sensitivity, night sweats, vision changes
Isaac diagnoses – neck pain, headaches, fatigue, worsening school performance and attention problems
Victoria diagnoses – recent tick bite, continued bed wetting, and joint pains
Extra precautions… for those living or working in areas of high tick exposure.
healthy lifestyle to aid your immune system (no smoking, no alcohol, regular exercise, healthy diet, drink 1/2 your weight in ounces of water/day, sleep 7-9 hours/night, and good vitamins/supplements such as vitamin D3 5000, good MVI like Alphabase and fish oil like Orthomega, excellent probiotic Orthobiotic, and others such as Biotics B complex, Vitamin C1000-2000/day, NAC, alpha lipoic acid, selenium, and glutamine)
daily use of astragalus 1000mg/day during the high risk season, which helps T lymphocytes
daily use of either beta glucan 10-250mg/day or aloe vera (acemannan) to help your immune system macrophages (the 1st line of defense)
Permethrin 0.5% spray to clothes and footwear (not skin) will kill ticks that land on clothing before they have a chance to bite you. A single application will protect you for 2 – 6 weeks even after your clothes are washed and worn again (available at camping supply stores or online).
DEET is the most common and effective skin applied tick repellent. However it is a neurotoxin and should be washed off with soapy water as soon as indoors.
A good alternative to DEET is Avon Skin-So-Soft Mosquito, Flea, and Deer Tick Repellent (has citronella combined with other components for effectiveness).
Due to the severe health risks associated with tick bites and Lyme disease, I would not trust anything other than the permethrin spray or DEET spray on clothing and shoes, and on exposed skin Avon Skin-So-Soft or DEET as in Deep Woods Off.
Patient Profiles (with names and identifying characteristics changed):
Martha – a patient of mine for 23 years with chronic migraines, rheumatoid arthritis since 2000, increasing brain fog and memory loss, increasing food sensitivities, dizziness, rashes, palpitations, memory loss, edema, insomnia, anemia, gastritis, palpitations, rashes, night sweats, low white blood cell count, vision changes – by God’s grace I leaned about Lyme disease and saw her this February 2014, realizing she likely has Lyme disease and drew IgeneX labs and started Lyme treatment!!! I have even more evidence she has Lyme disease because at that February visit she told me, “Remember in the 1990s when you put me on frequent doxycycline I always felt better for a time? And when my rheumatologist had me on the medicine Plaquenil for 3 years I also felt better? … Plaquenil treats rheumatoid arthritis AND also is part of treatment for Lyme and co-infections.
The Warners had a vacation to Michigan in May 2012 when they suffered many tick bites, and Mom was pregnant with Nathan. Now Mom Nicole, David age 8, Isaiah age 5, and little Nathan age 2 all have Lyme disease. Their previous doctors ignored their recurrent fever and fatigue symptoms in Fall 2012, and I diagnosed with their symptoms and IgeneX testing Fall 2014. Nicole has extreme fatigue, joint aches, headaches, dizziness, and brain fog. David has joint pains, neck pain, fatigue, insomnia, new and worsening food sensitivities, and new progressive attention problems and very significant deterioration in school performance and reading (was getting all A’s and now struggling to get C’s!). Isaiah has fatigue, new and worsening food sensitivities, abdominal pain, shortness of breath, night sweats, headaches, nosebleeds, insomnia, new bed wetting. Little Nathan has worse food sensitivities than the rest, fatigue, abdominal pain, constipation and diarrhea, sweats, and significant attention and sleep problems.
Lyme Tip: Remember that Lyme disease is a clinical diagnosis, based upon symptoms and your evaluation & discussion with your Lyme literate doctor or provider!
Action Step: Consider your upcoming travel plans and vacations. Research and call ahead to ask about tick exposure.
I am going to share Deirdre’s poem “Retrospection” this weekend. It is a perfect poem for what I have learned over the past year about Lyme disease (among other things)!
Hugs and God Bless,
Dr. Lisa
