Hello to All,
I just found out about this global online summit called Lyme Less Live More, produced by Brent Martin and Dana Walsh (from the documentary “Under Our Skin”).
Lyme Less Live More is a FREE 3 day long online event that will broadcast over 12 interviews with today’s leaders in transformational health and healing. Speakers include Dr. Dietrich Klinghardt, Dr. Beth McDougall, author Connie Strasheim and more.
The interviews will be broadcast, on a schedule, from September 18 to September 20.
Hello to All,
Following is a link to an excellent audio interview with Dr. Robert Mozayeni, a rheumatologist in Bethesda, MD who has conducted research with patients with chronic inflammatory diseases and found a link to Bartonella infection. I highly recommend listening to it. This could be a real breakthrough, especially since it comes from a conventionally trained MD.
Here are some important points from the interview:
- Chronic rheumatological diseases often have an infection as a root cause
- Lyme Disease is often a blanket diagnosis when in fact organisms other than borrelia are the problem. Those with Bartonella can often be misdiagnosed as having chronic borreliosis, which similarly manifests, though the two are distinct.
- Treating a patient for Borrelia when they actually have Bartonella can have detrimental effects
- Bartonella is hard to detect and difficult to treat
- Typical testing for Bartonella is often faulty and results in under diagnosis
- Treating Bartonella involves a long course of antibiotics, at least 6 months
- Neurological symptoms are common with bartonella infection
- Patients are often stigmatized and traumatized after repeated treatment failures in the medical system
In collaboration with Dr. Robert Mozayeni, a rheumatologist based in Maryland, and Dr. Ricardo Maggi, a research assistant professor at NC State, Dr. Ed Breitschwerdt, professor of internal medicine at NC State’s College of Veterinary Medicine and adjunct professor of medicine at Duke University, tested blood samples from 296 patients for evidence of Bartonella infection. The patients had previously been diagnosed with conditions ranging from Lyme disease to arthritis to chronic fatigue. Since rheumatic symptoms have sometimes been reported following cat scratch disease, the researchers wanted to see if these patients tested positive for B. henselae.
Of the 296 patients, 62 percent had Bartonella antibodies, which supported prior exposure to these bacteria.
Breitschwerdt and Maggi figured out how to cultivate the bacteria in the laboratory from blood samples of infected people. They founded a company called Galaxy Diagnostics to handle the laboratory volume. For information on Bartonella testing used by Dr. Mozayeni’s Clinic, please visit http://www.galaxydx.com/web/human-health/test-descriptions/
I dislike the narrow definition of Lyme Disease as an infection of only Borrelia, because so often these infections go together. However, I think that this research is a big step. Hurray for Drs. Mozayeni, Breitschwerdt, and Maggi!
Hello to All,
I neglected my blog and email this summer. I suppose part of this is because I just wanted to enjoy myself and forget about being sick for a while (as much as that is possible). The other part is because I feel stuck, unmotivated, and frustrated. I’ve done hundreds of hours of research and feel that I know almost everything there is to know about this disease. I’ve been through almost 2 years of antimicrobial treatment and 1 year of serious detox before that. Though I’ve made a number of improvements, I’m still not well. In summary, my problems below the neck have improved considerably, but certain neurological problems have worsened.
I thought that this would be a good time to take stock of my healing progress. Here is the status on my symptoms:
- Headaches: lessened in severity and frequency, but still a problem 10 – 15 days per month
- Joint pain: gone
- Muscle pain: improved – occasional pain in right side of neck and shoulder ( I love Cryoderm topical for this)
- Irritable bowel: gone, or perhaps just being managed with magnesium and fiber?
- Depression: intermittent and milder (managed using exercise, 5-htp, l-tyrosine, and l-phenylalanine)
- Fatigue: improved from the past two years, but still a problem
- Vulvodynia: gone for months now
- Tooth pain: improved but still flares occasionally
- Food intolerance: much improved
- Chemical sensitivities: improved but still a problem
- Heat sensitivity: improved but I have to be careful
- Light sensitivity: started in 2011. Improved since then
Problematic or worsening symptoms:
- Dizziness/light headedness: a daily problem for me. This started with an episode of vertigo in 2011.
- Heart palpitations: a new problem that developed in December of 2012
- Anxiety: still a big problem, (especially when I get dizzy I tend to panic)
- Cognitive dysfunction: still a problem, especially decision making, organizing, and short term memory
- Insomnia: worsened in December
I summary, my symptoms still wax and wane. I have more pain-free days with good energy, very few days where I’m completely miserable and dysfunctional, lot of days where I just feel crummy and tired. The dizziness is my most disabling symptom at this time. I frequently cannot drive because of it.
So what the heck is going on?
My doctor ran some blood tests: ferritin, thyroid, thyroid antibodies, the usual blood work up, and a nutritional test called a Spectracell. My ferritin (iron storage) is rock bottom at 4.0, my thyroid is low, no thyroid antibodies (hurray!) and I have a few other abnormalities. I await the results of the Spectracell.
My new treatment plan:
- Serious iron replacement
- Boost thyroid with SSKI iodine. If not helpful, switch to thyroid meds
- A new antimicrobial regimen using a tincture called Quintessence by Bio Pure. This contains herbs popularized by Stephen Buhner, including knotweed, stephania, andrograhis, red root, and smilax.
- Peony for blood
I’m starting very slowly, one herb at a time to determine tolerance. Wish me luck.
Until next time,
Prevalence of Lyme Disease in the US Is 10-Times Higher Than Previously Reported
The article contains solid background information and also includes helpful testing and treatment tips. I think the most important part comes at the end, where he quotes Lyme disease expert Richard Horowitz, MD, author of the new book, Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease:
“This condition is better termed Lyme MSIDS, short for Multiple Systemic Infectious Disease Syndrome. MSIDS is like Pandora’s Box because it includes many infections, co-infections and secondary infections. Treatment should be tailored to each patient individually.”
I think this statement embodies the future of proper diagnosis and treatment. The label of Lyme Disease is inappropriate for what we’re actually experiencing. On one hand, the criteria for diagnosis of Lyme Disease is set too narrowly by organizations such as the CDC. Then again, the term Lyme Disease has become a catch-all for inflammatory diseases caused by unknown pathogenic organisms. We don’t always know which pathogens are the culprits. Thus, we have a paradox, that patients are both underdiagnosed and overdiagnosed because of inadequate testing methods. This is the true crux of the dilemma that Lyme patients face. And of course there is the larger dilemma of lack of access to healthcare in the US. But that’s a topic for another day.