Creeping Lyme

She had been reluctant to return to the office after what had been a good year. She thought Lyme was behind her. Anyway, how is a 52 year old woman supposed to feel? She is getting older. She certainly doesn't feel the way she did when she was treated for Lyme disease years ago. Then she was incapacitated – incredibly tired and confused – to the point that she could not read simple stories to her kids. Now she came into my office, not sure if she was wasting her time. She had been having sweats recently, not just at night but during the day as well. She thought it was likely menopause. She started having memory loss, just a little. She found herself wandering into a room having forgotten why she went there. Pulling up words was becoming difficult. She was not quite herself. She wondered if it was age related. Well, she did have aches and pains. Some days it felt like her bones hurt. Some joint pain was normal at her age she thought.  The numbness and tingling in her feet had never gone away, but she had learned to live with it. Things were just creeping back. 

And here we have the debate refocused in Psychology Today :

Why Can’t I Get Better?

Solving the mystery of lyme and chronic disease

by Richard Horowitz, MD

Are Your Fibromyalgia Symptoms Due to Lyme Disease?

Tick-borne disorders often mimic chronic pain syndromes

Published on December 15, 2013 by Richard Horowitz, MD in Why Can’t I Get Better?

An article published in the same magazine recently described the opposite point of view: that held by the IDSA

Overcoming Pain .

Why people experience chronic pain, and the power they have to de-intensify it

by Mark Borigini

Don’t Get Ticked Off Over Chronic Lyme Disease

Lyme disease as a cause of chronic pain and fatigue?

Published on September 2, 2013 by Dr. Mark Borigini, M.D. in Overcoming Pain

 

The Lyme spirochete was first seen in 1981. Within a few years the AIDS epidemic came on the scene. Interestingly two other epidemics appeared on the scene at the same time. Chronic Fatigue Syndrome and Fibromyalgia. This was in the mid to late 1980s. Now many experts are melding the two mysterious maladies together. These patients are suffering and incapacitated with many symptoms well known to Lyme patients.

This was the onset of a shadow plague: an insidious one.

It is interesting how diseases change their faces at times. AIDS first seen as a devastating acute illness later became known as a chronic disease caused by a retrovirus with a long latent, asymptomatic phase.

I think the same is true for Lyme disease. First it was seen as arthritis in children and then as a “yuppie-flu” in young adults. Now it is much more. The great imitator as Dr. Horowitz notes.

It can be a disease that creeps up on people, fooling them into believing that what they are experiencing is stress, normal aging or something else to put out of their heads.

Sometimes when you think Lyme is behind you, it creeps up once again.

Lyme kills

Three deaths reported from heart inflammation caused by Lyme disease

bo.st

Three young adults in the Northeast who abruptly died in the past 13 months had an undetected heart inflammation caused by Lyme disease, according to a federal study published Thursday that suggests death from the tick-borne bacteria is more common than previously thought.

via Boston.com

 

Really this is nothing new.  Patients die every year, in many hospitals from heart block due to Lyme disease. It is only when the lucky ones recover we learn that Lyme is the culprit. Lyme can affect the heart in several ways: damage the electrical conducting system causing the heart to become irregular and then stop(heart block), cause inflammation around the lining of the heart causing the pericardial sac to fill up with fluid constricting the motion of the heart and by directly attacking and damaging the heart muscle itself.

 

I currently have 2 patients with life-saving and permanent pacemakers and another patient who suffered with acute pericarditis and whose life was saved with an emergency surgery cutting a window in the pericardial sac to allow the constricting fluid to drain.

 

Despite this, the same, tired IDSA talking heads keep telling the public that Lyme is a mild illness cured with a couple of weeks of antibiotics and that no-one has ever died from Lyme disease.  "There have never been any documented cases of death resulting from Lyme disease."

Beyond Lyme disease

A patient I saw today embodies something quite different from my run-of-the-mill Lyme disease patient. A typical Lyme patient was in good health until something happened. The disease may have come on abruptly or gradually over a period of time. But before the illness began, at a defined point in time, the patient was in fairly good health. Another patient type, like my patient today, has been sick for a very long period of time. Perhaps decades. There was no clearly defined point in time when the illness began. In this case she became acutely ill 2 years ago and worse over the past 4 months. But looking back, she has not felt well for decades. She has not functioned well for a very long time. Many such patients have previously carried various diagnoses such as: fibromyalgia, chronic fatigue syndrome, Epstein Barr, chronic depression and/or somataform disorder. They typically have a history of other troubling chronic illnesses like IBS, migraine, asthma or interstitial cystitis. Something else is wrong with these patients. Tick borne illness does not account for all their troubles. These are our most challenging patients. They are delighted to have the diagnosis of Lyme disease, something real, validating. But this may be only a starting point -- something that broke the back of a camel that was already severely sagging. These patients have been looking very hard for a long time for help.

So what is wrong? A chronic yeast problem. A genetic defect of MTHFR causing a methylation problem. Environmental toxins. Heavy metals. Mold toxins. Epstein Barr virus. Chamydia pneumonia. Mycoplasma. Bad genes. Or just bad protoplasm. All the above?

In the simplest terms chronic illness results from an ill fated interaction of a person's genetic makeup, genotype, with environmental factors. That's it. A particular gene can have various expressions in a person. These are called phenotypes. In the future I suspect all chronic diseases will be corrected with tweaking of DNA. For now we have to "holistically" integrate bio-psycho-social-environmental factors and seek out our best current solutions.

Many genetic flaws are obvious. For example, ones that lead to sickle cell anemia or cystic fibrosis. We really know very little about the function of most of our genes. Genetic flaws or mutations may be responsible for subtle illness. A gene may be "partially expressed." For example, rather than causing full-out celiac disease the flaw may cause gluten sensitivity.

Since this is a BLOG, not a chapter in a book, I will give a few examples of how this approach is helpful. A patients suffers with severe headaches. His mother and brother suffer with migraines. Rather than increasing the dose of Mepron or pounding harder on a co-infection, think about using an anti-migraine drug like Topomax.  A patient has progressive memory loss. A first degree relative suffered Alzheimer's disease at a young age. Rather than upping the ante of IV antibiotics, consider a neuroprotective therapy like hyperbaric oxygen. A parent and sibling suffer with depression and bipolar disease. Rather than increasing anti-Bartonella therapy for a depressed patient, consider early institution of anti-depressant therapy. On the other hand, if the depressed patient is suffering from a personal trauma, push for talk psychotherapy rather than reaching for a pill. A patient suffers with severe Obesity. Both parents are morbidly obese. Nutritional therapy is not going to work. Consider an anti-obesity medication like phentermine. A patient has a poly-arthritis, refractory to treatment. A parent has rheumatoid arthritis and a sibling has psoriasis or lupus. Use antibiotics with anti-inflammatory properties like doxycycline or minocycline. But also use disease modifying drugs like Plaquenil, and yes, consider more potent disease modifying biologicals in selected cases. If it is determined a patient has a genetic defect for the elimination of toxins, work hard to correct this issue.

Sometimes genetics trump environmental factors and sometimes it is the other way around.

A patient with a 20 year history of fatigue is going to have adrenal fatigue, notwithstanding genetic factors.

When treating difficult patients the doctor must be aware of common disorders and not miss the easy ones. Whether or not dad uses a C-PAP, get the sleep study. Sleep disorders are omnipresent.  The "nonspecific" loss of stage 3/4 sleep may be treatable despite what the sleep doctor says. Some rocks should always be turned over.

Bottom line: every organ system and every symptom must be evaluated in the context of environmental factors, like Lyme disease, and the confluence of genetic factors. Many issues many need to be addressed. Many issues beyond Lyme disease.