Unnecessary neck surgery

After 3 years of therapy my 60 year old patient feels well enough for a trial off antibiotics. During this recent visit I explored the topic:  when do you think you started having symptoms of Lyme disease?

She thinks it started 5 years ago with neck pain and a "pinched nerve."

Twenty percent of patients visiting their primary care physicians have chief complaints considered orthopedic.  One of the more common complaints is neck pain or shoulder pain.  Many of these patients also complain of symptoms which radiate into an arm. This is typically diagnosed as cervical radiculitis or cervical radiculopathy, also known as a pinched nerve in the neck. Large nerve branches called radicals, exit at intervals from the spinal cord between the cervical vertebral bodies. Vertebrae are numbered based on location. If a nerve root exists between the second and third vertebrae in the neck, called C2 and C3 the the corresponding nerve root would be C3. Almost all pinched nerves in the neck occur at the space between C5 and C6, causing C6 nerve root symptoms or between C6-7 leading to C7 nerve root problems. When these nerves are "pinched" symptoms referable to the sensory and motor functions of the particular nerve will typically be seen:  weakness, decreased sensation and loss of the relevant deep tendon reflexes. This is a diagnosis that any 3rd year medical student can easily make.

Doctors today rely more heavily on tests to make or confirm diagnoses. An MRI of the neck is typically ordered. A bulging or herniated disc or a bone spur will be seen in the corresponded area and the diagnosis is made. Simple. In some cases if more information is desired an EMG/NCV will be ordered.

Busy doctors frequently make a quick jump: neck pain to MRI. A diagnosis is made.

My patient with severe neck pain had been followed by her neurosurgeon for over a year.  The patient had been treated with a year of physical therapy and 3 epidural steroid injections all of which only intensified the pain. Her doctor said the finding on the MRI could not support surgical intervention and she should continue conservative measures.  On a subsequent follow-up visit her usual doctor was away and she saw a stand-in. He quickly proclaimed he could fix her pain with an operation. Desperate for relief she agreed to an operation. One surgery led to another. She's got the scars to prove it but her pain did not improve one iota.

Google cervical radiculitis or radiculopathy.  You will find the cause is a disc problem or a bone spur.  You will see that various therapies are available including surgical ones.

Lets go back to the test. MRI of the spine. Studies have been done in asymptomatic folks in the general population. At age 20 15% of folks have disc disease. By age 60 a striking 85-90% of asymptomatic individuals have disc disease in their neck according to MRI findings.

Lets go back to google. Now search Lyme radiculitis or radiculopathy and the connection will clearly appear.  If you had used the search word radiculo-neuropathy to start with Lyme would have immediately popped up.

These conditions looks like the same problem. With Lyme (and other infections) pain does not occur because the nerve is pinched but because the nerve is inflamed by the infection. In many cases there is a combination of the two. The nerve, a little pinched, asymptomatic, becomes very symptomatic when the nerve is inflamed by infection.

In the case of this particular patient she also had a "pinced nerve" in her back as well causing sciatica which worsened with a year of physical therapy and cortisone shots.

In her case both the neck and back pain completely went away with a course of antibiotics.

Radiculoneuropathy is a well known complication of Lyme disease described early on with Bell's Palsy and considered a form of neuroborreliosis in the literature.

An IDSA thinking neurologist recently published a paper which stated there are only three neurological manifestations of Lyme disease: meningitis, cranial neuritis like Bell's Palsy and radiculoneuritis.  His main point was discredit the notion that Lyme is associated with other neurological diseases like MS and ALS as frequently discussed by ILADS types.

My patient's warning:  Think twice before you undergo the knife for a pinched nerve in your neck. 

Lyme war: hotter than ever

The war over Lyme disease is perhaps only getting hotter. Numerous articles have been published in the last couple of years; many have been editorial in nature and have strongly touted the IDSA point of view. A piece written by Paul Auwaerter in 2012 published in “Transactions of the American Clinical and Climatological Association” is exemplary of this trend. Some important and relevant issues are covered in this pseudo-erudite, sarcastic editorial  -- masquerading in the guise of academic medical evidence.  Here the IDSA is strongly pressing its case while deriding phony LLMDS who mendaciously contend they are the only ones who truly understand the disease.  I personally do not like the term LLMD because both sides are generally very literate with regard to Lyme disease literature. Naturally each side cherry pick the data which supports their a-priori view. Of course I believe their viewpoint is dangerously wrong.

It is asserted that chronic Lyme disease is the diagnosis of the day, the soup du jour,  used to fill in a vacuum, to explain chronic maladies poorly understood by medical science. In typical fashion, chronic fatigue syndrome and fibromyalgia are trudged out as disorders erroneously attributed to Lyme disease. Lyme and other infectious diseases before it have been erroneously posited to fill the vacuum of poorly understood chronic illness according to the author. An historical list, ostensibly discredited, of infectious agents previously used for the same purpose are said to include: brucellosis, Epstein-Barr virus, candidiasis, toxic mold and others. The assumption here is that chronic Lyme disease will be replaced with some other entity in the future when the next best thing comes along.

The author states that the LLMDs and their community have created a phony world of bad doctors, bad research, poor publications and meetings to promulgate cockamamie theories and that a thin veneer of pseudoscience is used to unfairly and unwisely promote political agendas. Physicians who stand outside the narrow paradigms of the IDSA are labeled as unethical

The assumptions of the IDSA have been challenged as of late. This is nothing new. In "Contemporary Clinical Trials" in 2012, Delong published a biostatistical review of four clinical trials,(the cornerstone of the IDSA worldview) which clearly refutes the conclusions drawn by the IDSA from these studies. The new analysis shows there is evidence of beneficial effects of the treatments given in the studies.

This assessment was of course later challenged by the cadre of: Klempner, Baker, Shapiro, Marques, Dattwyler, Halperin and Wormser who not surprisingly, vehemently disagreed.

The most recent of the 4 studies was published in "Neurology" in 2008. Patients were treated with 10 weeks of intravenous ceftriaxone. Evaluation of the subjects at 12 week showed significant improvement in neuro-cognitive function and improvements in quality of life measures including fatigue, pain and impaired physical functioning. At 24 weeks the cognitive improvements were not sustained but the improvements in physical functioning were.

Apparently, Dr. Fallon, the lead investigator of the above mentioned study  is not enamored with the way these study results are being bandied about.  In "Open Neurology Journal" in 2012 he states that posttreatment Lyme disease improvements in patient outcomes were demonstrated in 2/4 of the NIH sponsored studies. He concludes:  “While repeated intravenous therapy can be effective, safer modes of delivery are needed.”

The IDSA continues to maintain that two-tier testing for Lyme disease is accurate. This is an important part of the narrative repeatedly used to prove patients do not have Lyme disease. In the "European Journal of Clinical Microbiology and Infectious Disease" in 2011, Ang et al tested 8 different ELISA systems and 5 immunoblots and found no consensus whatsoever amongst these various IDSA endorsed and FDA approved tests. This precious test, promoted to the hilt,  is not accurate.

The counter paradigm regarding Lyme disease is in fact steeped in science. Animal studies in mice, dogs and primates have shown that established Lyme cannot be fully eradicated from the host. Many unique, survival enhancing properties of the microbe in-vitro and in-vivo, have been well described in medical and scientific, peer-reviewed literature now over a period of decades. The assertion that groups like ILADS manufacture evidence is fabricated from whole cloth.

IDSA proponents  believe that notions of chronic Lyme disease reflect some type of mass hysteria fueled by bad science and the internet.  A frequent mantra oft repeated to my patients has been:  "if you only did not read the internet everything would be fine." If only it were true.  Lyme patients are misdiagnosed, disenfranchised, marginalized and dismissed by a medical system which is all to quick to labels them as crazy rather than sick.  The diagnosis of Munchausen's by proxy was used by a hospital in an effort to legally remove a sick child from loving parents. (This occurred to a patient I have evaluated).

Lyme disease is not a fad as the editorial states. Unfortunately it is here to stay. The epidemic has been increasing in prevalence and severity since the 1970s.

The treatment of patients suffering with this unseen plaque is challenging. Each case is different. Multiple factors influence the presentation of the disease. The scope of the illness ranges from mild to deadly.  Some factors seem random. Others are environmental or genetic. There are variant strains of Lyme which may play out differently. The contribution of co-infections with Babesia and other bacteria plays an enormous role.

Lyme war:
 
On one side, the fight is largely political. On the other it is largely professional. Well respected "experts" - the names mentioned above, and others, are using the full weight of regulatory authorities, prominently Medical Boards or other quality review organizations such as those working for health insurance companies, over whom they have much influence, to eliminate their adversaries:  physicians who do not agree with or practice by their standards.

Unfortunately we cannot have a civil disagreement about two paradigms and two standards of care. No. And that really stinks.

 

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.

More about HBOT

 We have had a lot of success with our hyperbaric oxygen therapy (HBOT). Positive clinical responses have been varied.

The latest research regarding the use of low pressure hyperbaric oxygen therapy for the treatment is presented in a peer reviewed study published in PLOS one. Patients suffering with mild brain injury were shown to have significant improvements by cognitive metrics, quality of life assessment and SPECT scanning. The patients were treated with a typical regiment available for our patients: one hour at a pressure of 1.5 ATA. These patients were treated for 2 months, total of 40 treatments and were shown to have persisting benefits.

There of course is no research regarding the use of hyperbaric oxygen therapy for patients suffering with Lyme disease, but I think this study can be used as a good surrogate.

There is some evidence that low pressure may be more effective than higher pressure with less risk of toxicity. The pressure of 2.4 ATA may be associated with toxicity in the brain.

There is evidence that pressures of 1.3 ATA with room air are effective. This therapy has mistakenly been used as the placebo control group (in another study)  but in fact rather than acting as a placebo was found to be beneficial.

Many of our sickest patients have cellular dysfunction with glutathione inadequacy.  This can be measured with a blood level. MTHFR mutations with decreased methylation and elimination of toxins may be an issue. HBOT is another way of increasing glutathione and promoting cellular detoxification. Other benefits include: increased tissue oxygenation, decreased inflammation, beneficial effects on cytokines and lymphocyte functioning (enhancing the immune system) and improving neuroplasticity.  HBOT works well with antibiotics and may increase antibiotic penetration into tissues. The therapy may obviate the need for intravenous antibiotics.

Lies about the Western Blot

Patients have endless curiosity about Lyme tests, especially confusing Western Blots. It is no surprise since mainstream medicine keeps pushing the same lies.

Lie #1:  The only test you have to order is "Lyme serology." This is the ELISA or EIA followed by a reflex Western Blot. (The second step, Western Blot, is only performed when the ELISA is positive). The technology has improved a lot. The ELISA is highly sensitive and the Western Blot very specific. Other laboratories (always referring to IgeneX)  have invalid tests which are not FDA approved and are not peer reviewed. Do not use the laboratories. (And make sure your patients stay off the Internet).

Truth:  Despite the claim, the technology has not improved and does not continue to improve. The technology is the same. The FDA regulates drugs and medical devices, not laboratory testing. Biomedical companies may develop off the shelf  test kits and market these diagnostic test kits to clinical laboratories. These diagnostic test kits are considered a "medical device" and thus come under the purview of the FDA.  In general, test kits sold for the mass market are designed to be easy to perform or idiot proof to the extent possible. Commercial laboratories like Labcorp and Quest purchase such ready-made kits for testing patient samples for Lyme disease. These commercial test kits are vetted by the FDA and considered "accurate:"  They do not change year-to-year. These tests are not upgraded anymore than a tablet of aspirin is. Lyme ELISA and Western Blot from Labcorp/Quest done in 2005 and 2013 are the same. Despite claims to the contrary, the test is not better, the ELISA is not more sensitive or the Western Blot more specific.

These tests are not peer-reviewed. I do not know what this means. The tests are approved by the FDA. Which peers are we talking about?

Specialty laboratories like IgeneX and Stony Brook do better Lyme tests. They make better, more complex and accurate test kits for use only in their laboratory facility. They do not manufacture testing kits for resale to other laboratories. Because of this the FDA has no involvement whatsoever in these laboratory activities. This is not something the FDA does. Laboratory specific testing methods are not a medical device. Why is this so complicated?  OK -- so you might wonder, how do we know these facilities do a good job. Clinical laboratories are licensed by and regulated by states agencies who perform routine proficiency tests to make sure the labs do a good job. New York state goes a step further. Not trusting other state laboratory licensing boards, it does its own proficiency testing in addition to those performed by the state of origin of the laboratory. So when New York  licensing authorities allow IgeneX to operate within its jurisdiction, you can be assured that the lab has passed the mustard. Despite this, physicians of authority in New York and elsewhere continue to disparage IgeneX calling it such things as a "quack lab." They say IgeneX for example is not validated, peer reviewed or FDA approved. These claims are misleading obfuscations, prevarications or lies, plain and simple. Why do they want us to use less accurate testing methods??

Lie #2: Although the standard Lyme tests are not accurate in early Lyme disease and may miss 40% of cases, the test is virtually 100% accurate when performed later in the course of the disease (generally after 6 weeks). In virtually all cases patients convert from IgM bands to IgG bands. When this does not occur the original positive 2-tier ELISA/IgM Western Blot positive test was in fact a false positive. False positives are common. Many other common ailments like mono and rheumatoid arthritis can cause false positive Lyme tests. Many patients diagnosed with Lyme disease showing only positive IgM Western Blots never had Lyme in the first place. The conversion to the 5/10 IgG bands is dependable.

Truth: I do not know what planet they are on. None of the above is true. The CDC designated the 2-tier test for surveillance was designed to be exceedingly accurate: about 100% accurate. I am sorry to report that Lyme did not read the rule book about IgM and IgG antibodies.  Very few patients ever develop a significant IgG response. The infamous magic number, 5/10 seems to have been made from whole cloth.  The formula was agreed upon in a weekend meeting in Dearborn Michigan of CDC scientist and national laboratories directors.( 19 years ago in 1994 and never re-visited). The point of the exercise was to find a formula that would put various laboratories and researchers on the same page. This test was designated for surveillance purposes. A positive means you were definitely infected with Lyme disease.  It was called a national surveillance test and retains that name to this day. The famous CDC test was never developed for purpose of making a clinical diagnosis of Lyme disease.  Why is that complicated? Just to show the insanity of it all --  the same researcher, Dressler, who came up with the famous 5/10 also presented a 2/8 IgM band standard. This scheme was kicked out because his laboratory used the N40 strain instead of the B31 strain of Lyme.  The assembled experts decided to use a formula of 2/4, changed to 2/3 for positive IgM criteria. Again, it was a tool designed to follow the number of cases of Lyme disease over time in different geographical locations. It would not have mattered it the 2/8 formula had been adopted instead of the 2/3 formula. By the way, the 4th band, #37, was dropped for technical reasons. These agreements were reached so that researches everywhere could read from the same sheet of music.

As for false positives , these appear to be exceedingly rare. As far as I can tell a positive 2-tier CDC test again is virtually 100% accurate. Of course most patients suffering with Lyme disease do not have this result.