Category Archives: Uncategorized

Lyme Disease Far More Common Than Previously Known

Hello to All,

This is probably not news to my fellow Lyme Disease sufferers out there, but I’m happy to see that this disease is getting more exposure in the media. Even the stalwart CDC is admitting that there are more cases than they thought.

Here is a link to an article from NPR.org

http://www.npr.org/blogs/health/2013/08/19/213544183/lyme-disease-far-more-common-than-previously-known

Best,

Laura

Skepticism versus openess

“What is called for is an exquisite balance between two conflicting needs: the most skeptical scrutiny of all hypotheses that are served up to us and at the same time a great openness to new ideas. If you are only skeptical, then no new ideas make it through to you. On the other hand, if you are open to the point of gullibility and have not an ounce of skeptical sense in you, then you cannot distinguish useful ideas from the worthless ones.”

― Carl Sagan

I like this quote immensely. I post it here because I believe that it applies to treatment of poorly understood diseases like Lyme Disease. Had I stuck with the opinions of the 15 different conventional medical doctors (who diagnosed me with everything from depression, chronic pain, chronic fatigue syndrome, fibromyalgia, and plain old hypochondria) I would not be recovering as I am.

I did my own research. I searched numerous websites, message boards, and blogs looking for what worked for others.

I tried numerous therapies, herbs, and practices that lacked hard scientific evidence but had enough anecdotal evidence for me to believe that they might work. And some of were remarkably effective.

I sought out alternative practitioners, even when I did not fully understand their approaches. But only after I read enough evidence that they were helpful.

I was both open minded and discriminating about the information I found. Though there were many dead ends, I kept searching. I understand now that this was all part of the path to the solution.

I worked in medical and social science research for ten years. Our research led us to investigate the very nature of evidence. I learned that if you only believe in concepts or practices that are validated by double-blind, randomized, placebo-controlled trials, then you are missing out on the new, cutting edge information. If you believe in that which has no evidence at all, then you are gullible. Evidence comes in many forms. One must be open enough to seek out the new, but discriminating enough to weed out the bad.

The Amygdala Hyperarousal Model and Retraining Program

I was recently sent some information that I find promising on the connection of ME/Chronic Fatigue Syndrome/Fibromyalgia to microbial infection and trauma to the amygdala (the primal seat of emotion in the brain). A British therapist, Ashok Gupta theorizes that the amygdala is traumatized by psychological stress and chronic infection (including a virus called XMRV) and that it can be reprogrammed to help patients overcome this type of illness. Following are excerpts from his website:

 

The Amygdala Hyperarousal Model

“…ME/CFS and Fibromyalgia may be caused by a conditioned trauma in the amygdala following an acute viral, bacterial or physical insult, combined with psycho-social distress. Once the classical and operant conditioning has occurred, the amygdala in association with the insula, become hyper-sensitive to signals from both the body and external stimuli, and magnify both the extent and frequency of the incoming stimuli in the sensory thalamus and cortex.”

 

How Amygdala Retraining Might Reduce XMRV and other Opportunistic Pathogen Levels

“Amygdala retraining aims to reduce the stimulation of the sympathetic nervous system by creating a projecting neurone from the prefrontal cortex to the amygdala to control its over-zealous reactions. This in turn would reduce the sympathetic overload, allowing TH1/Th2 ratios to gradually return to normal, allowing the body’s own immune system to fight off opportunistic infections such as the suspected XMRV. Symptoms from amygdala hyperarousal (including changes in the brain), and symptoms from opportunistic infections would then subside, as well as any allergic effects of TH2 dominance.

Amygdala retraining aims to bring homeostasis back to the body after a period of imbalance, where the balance between the sympathetic and parasympathetic systems returns to normal, as does the TH1/TH2 balance.”

Read more about his theory and recovery program at http://www.guptaprogramme.com/xmrv.asp

 

Now, I don’t know if his program is worth a toot, but I do like his hypothesis for the vicious cycle of CFS type diseases. I think he hits the nail on the head.

  1. Genetic and Environmental Risk Factors (1)
  2. Triggers: Acute Psychological Stress (2) & Viral, Bacterial, or Other Triggers (3)
  3. The combination of these precipitating factors changes the circuitry of the amygdala, making it continually over-stimulate the body (4).
  4. From then on, the amygdala continually over-stimulates the sympathetic nervous system directly (5)
  5. Hyper-arousal of the body then causes the symptoms (6) and creates Secondary Illness Cycles (7).

“Over-stimulation can cause adaptation in receptors so that systems are down-regulated, or certain systems may simply exhaust due to over-stimulation, as is the case with the adrenal glands. Nitric oxide levels may rise (as per the observations of Professor Martin Pall), which can cause a whole host of secondary effects and symptoms in the body, including mitochondria dysfunction, perpetuating the entire vicious circle. Because the immune system is responding inappropriately, opportunistic viruses such as HHV-6 have the opportunity to flourish, increasing symptoms. Finally, at 7, secondary illnesses such as allergies and chemical sensitivities can occur due to the hypersensitivity of the entire system.”

Sound familiar?

This could be a revelation for Lyme Disease sufferers! As we are learning, antibiotic treatment alone is not the answer, especially for those with chronic Lyme.  We need help to detoxify and desensitize/reprogram. Perhaps this therapy could be useful in this regard. I plan to do further research.

– Laura

What is Lyme Disease?

I assume most people who visit this blog are either Lyme sufferers or a friend or relative of someone who is. For those new to this disease, I will provide a brief overview.

What is Lyme Disease?

Lyme disease is an inflammatory disease caused by the bacterium Borrelia burgdorferi (Bb) and is transmitted to humans through the bite of infected ticks. Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans. If left untreated, infection can spread to joints, the heart, and the nervous system (Centers for Disease Control, 2012).

If discovered early, the disease can often be treated with a few weeks of antibiotics. Unfortunately, the disease is frequently undiagnosed. Patients who go undiagnosed for months or years can develop Chronic Lyme Disease and face a much more difficult recovery with multiple antibiotics and other treatments. Chronic or late-stage Lyme is a controversial topic. Many physicians do not believe that it exists, compounding the problem of diagnosis.

Other facts about Lyme Disease

  • Lyme Disease is prevalent across the United States and throughout the world.
  • Fewer than 50% of patients actually remember a tick bite.
  • The Centers for Disease Control (CDC) in Atlanta, Georgia, reports that “there is considerable under-reporting” of Lyme disease, maintaining that the actual infection rate may be 1.8 million, 10 times higher than the 180,000 cases currently reported.
  • Of patients with acute culture-proven Lyme disease, 20–30% remain seronegative on serial Western Blot sampling (International Lyme And Associated Diseases Society, 2012).
  • The disease commonly has multiple co-infections, including, Babesia, Anaplasma, Ehrlichia and Bartonella.
  • Borrelia burgdorferi is a spiral shaped bacterium called a spirochete, discovered by Dr. Willy Burgdorfer in 1982. Syphillus is another spirochete bacterium related to Bb.
  • Like syphilis in the 19th century, Lyme disease has been called the great imitator and should be considered in the differential diagnosis of rheumatologic and neurologic conditions, as well as chronic fatigue syndrome, fibromyalgia, somatization disorder and any difficult-to-diagnose multi-system illness (International Lyme And Associated Diseases Society, 2012).

Greetings

Hello to all.

I was diagnosed with Lyme Disease in September of 2011 after suffering from 13 years of debilitating chronic pain and fatigue. I was frightened and upset by my diagnosis at first, but soon realized that this would finally lead me down the path of recovery. One must know their enemy to win the battle! And I felt immense relief and justification that I AM NOT CRAZY! This is not all in my head. I am actually sick with a verifiable disease, not “just depressed” or otherwise mentally unsound or stressed. And it’s not my fault that I have this.

Thank goodness I found a physician who believed me and knew to test me for Lyme. I expect my recovery will take months to years, but it feels good to be on the right path.

More to come soon.

– Laura