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.

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Babesia cerebritis

Psychiatric problems which accompany neuroborreliosis have largely been attributed to Borrelia and Bartonella like organisms within the central nervous system. This synergy has been linked to an array of psychiatric syndromes and symptoms. Many of these patients have irritability, mood swings, depression, mania, personality changes and even episodes of rage. "Lyme rage" seems to be closely linked to the affiliation of these two brain invading pathogens.

But I think the problem of cerebral babesiosis may present even greater challenges. I am thinking about a patient I have just started treating as well as several others in my practice. Some patients have incredibly severe psychiatric Herxheimer reactions whenever treatment for Babesia is instituted. Even minute amounts of antimalarial therapies are not tolerated. Several of my patients share certain characteristics. Their moods are particularly labile. They frequently cry at the drop of a hat or for no reason at all. They experience racing thoughts associated with severe anxiety which are frightening and difficult to control. They also may quickly develop suicidal thoughts. These reactions are intense and come on very quickly. And they leave just as quickly when anti-malarial therapy is withdrawn. These reactions may occur with even drops of Mepron or artemesinin. In treatment we (the patient and me) find ourselves repeatedly treating and backing off and never getting to therapeutic levels whichever drug we are attempting to use.

A current patient comes to mind. He has suffered with Lyme for more than 15 years.  His chief complaint relates to a muscle problem. When I looked at his blood smear I saw great examples of Babesia. And to firm up the diagnosis the WA1 titer was positive at 1:512. It was only after I gave him these results that he told me various doctors had been trying to treat Babesia for years but he could never get through therapy because it always made him crazy.

One of my observations is that it is easier to treat these patients when they are on IV Rocephin. I presume this is due to a neuroprotective effect.

Other strategies are needed for the treatment of these vexing patients.

Lyme colitis

I am hoping that case reports of this kind will be written up in the future for publication in medical literature.

I first met this 48 year old female in the spring of 2012. For several years she had a variety of mysterious symptoms but the one of interest here relates to problems with her gastrointestinal system. Because of chronic abdominal and pelvic pain a gynecologist had preformed a laparoscopy looking for pathology and this was normal. She noted changes in her bowel movements complaining of some loose and frothy appearing stools without the presence of blood. A gastroenterologist performed an upper endoscopy, a pill-camera exam of her small bowel and a colonoscopy. All of these tests were normal. Her gastroenterologist was stumped.

She did not recall a prior history of tick bites. She lives in an urban area. Historically, she could not recall significant risk factors for tick exposure except sitting on a blanket at a picnic on one occasion.

Her general practitioner --  paying attention to other symptoms, including fatigue, neurological symptoms and cognitive symptoms ordered a Lyme test:  the two tier standard surveillance test was positive by CDC standards.

Her physical examination was unremarkable except for mild diffuse abdominal tenderness.

Standard laboratory testing, including tick-borne co-infection testing was negative.

I ordered a test which was performed by Clongen Labs which was highly instructive.
At my request, a specimen obtained via colonoscopy from a normal appearing section of colon mucosa was submitted for PCR analysis. The results were positive for Borrelia burdorferi sensu stricto.

She has a complex, multi-system case of Lyme disease and associated co-infections, the details of which will not be discussed.  The gastrointestinal symptoms completely cleared within about 3 months. Other symptoms have been more stubborn but are now much better after 6 months.

I have found similar finding in many other patients. I do not think PCR positive Lyme case reports exist in medical literature.

In some cases there are abnormal findings with colonoscopy usually diagnosed as microscopic colitis and/or collagenous colitis.

Comment:  Most gut flora withstand are intense bombardment with antibiotics because of protective biofilms.  In the case of Lyme colitis is seems likely the spirochete becomes incorporated within some of these poly-microbial biofilms. In nature, most biofilms contain a variety of microorganisms which may include bacteria, fungi and protozoans. Despite innate protection of "good flora," pathogenic bacteria like: shigella, camplobacter, toxigenic E. coli, and C. difficile respond to appropriate antibiotic therapy.

I believe Lyme colitis is a common and generally unrecognized part of multi- system Lyme disease and that further research into this area my provide further evidence of a protected niche which supports persistence of the organism in human hosts.

Lyme disease, Alzheimer's disease, Glutathione

Nothing short of amazing. This 62 year old female walked into my office beaming. She drove more than an hour to my office, something she had been incapable of doing for many years.

This patient had been dealing with 2 sick family members over the past years and had neglected herself. Over the last 2 years her family had become progressively concerned. She was loosing the ability to function. She could hear something repeated ten times over only to forget it moments later. She was experiencing a rapid, global decline in cognitive functioning and the ability to manage activities of daily living.

She had a long history of Lyme disease but had been non-compliant with therapy. She complained that every medicine gave her side effects: a moot point since she never remembered to take them.

We skipped the SPECT scan and went right to a PET scan.  These are both nuclear medicine scans which make observations regarding brain function. A SPECT images blood flow: areas of the brain which are not functioning have decreased/abnormal blood flow and therefore oxygen utilization patterns.  The PET images tagged glucose and actually images areas of the brain that are specifically not metabolizing sugar, not working/nonfunctional.  The PET is approved for an adjunct in making the diagnosis of Alzheimer's disease.

Her PET showed classic signs of Alzheimer's disease.  With these results the patient was now worried and agreed to attempt to treat Lyme disease in earnest.  And as one of her astute neurologist astutely: Alzheimer's doesn't get better. She has.

On my recent exam I could find nothing significantly wrong with her memory. Doctors frequently assess mental capacity with a mini-mental examination. She did great. She could count backwards from 100 by serial 7s; she could recall three items after 5 and 10 minutes and she could spell WORLD backwards. Her affect showed clarity I have seen in 5 years.

So what happened?  IV antibiotic therapy. I started treating her with Rocephin. Chronic pain melted away which was a great relief but her mental status was not quick to change. I then added Flagyl, a drug which fights the strange pleomorphic (cyst-like) forms of Borrelia in the brain.  After 3 months her brain was not significantly better.  Now after 4 1/2 months there is a real change. My patient did something else as well,  with my approval under my radar. We ordered IV glutathione which she has been receiving every other day for the last month. I don't know yet, but this could be a game changer.

Glutathione is the master antioxidant on a cellular level and it is critical for detoxification on a cellular level. Chronically ill patients are generally deficient. Many patients have reported that intermittent doses of IV glutathione in their doctor's office have been very helpful. Having a PICC provided convenient access.

I am hearing a lot about methylation. The induction of methylation pathways promotes glutathione and this can be achieved with a number of supplements, primarily various forms of B12 and folate.  Active forms of B12 including methylcobalamine and hydroxycobalamine are taken under the tongue with special forms of folic acid such as Folinic acid. The recommended protocols are a bit more complex.

It makes me wonder if this might be why patients frequently have a lot of energy after receiving B12 shots. Maybe not a placebo effect after all.

The simultaneous use of hyperbaric oxygen therapy also augments the effectiveness of antibiotics for brain recovery.  Hyperbaric by itself, results published (for what its worth), at low pressures, about 1.5 ATA is associated with significant cognitive improvements.

As I ramble on.... the snarky (for what its worth) comment has to do with how doctors like me look at medical studies with our distrust of "evidence based medicine."  Perhaps it is a little hypocritical for us to throw out the studies that deny chronic Lyme but keep studies that prove things we believe in/agree with. Well lets not go overboard and throw out the baby with the bath water. Some studies are useful. Anyway, the "denialist" studies never proved their point: they were poorly designed with built in biases and them misinterpreted.  In my blogs there is a recurring theme:  medicine is a healing art, not a science. But studies and science have a great deal of value. The help us understand mechanisms and at times point us in a direction.

Immune hyperstimulation, Lyme disease, lymphoma, hyperbaric oxygen therapy (this post has an identity crisis)

My patient today is a 60 year old female who has suffered with severe Lyme disease for more than 3 years. At one point she was mistakenly diagnosed with tertiary syphilis.  Most recently symptoms have included: burning sensations, numbness, twitching, palpitations, flulike symptoms, difficulty walking with leg weakness, double vision, forgetfulness, brain fog, joint pains and mood swings. At this time she is very troubled by symptoms of head and ear fullness.

I will tell you a little bit more about my patient.  She suffers with chronic hepatitis C contracted from a blood transfusion in 1989. Several years ago she was diagnosed with Waldenstrom's macroglobulinemia -- before the Lyme diagnosis. This was treated with chemotherapy and plasmapheresis and she has done quite well.  Waldenstrom's is a type of B-cell type non-Hodgkins lymphoma.

A paper published in 2008, Archives of Internal Medicine, Koshiol et al, reviewed the relationship between WM (Waldenstrom's) and chronic immune stimulation.  Persons with autoimmune diseases had a 2-3 fold increased risk of developing the disease. In addition, certain infectious diseases were also linked to an increase risk of the disease. Prominently the authors mention Hepatitis C and rickettsiosis.  Autoimmune diseases listed include rheumatoid arthritis, Sjogren's syndrome, and MS.

WM is a rare type of lymphoma. Although incurable, it can have a rather indolent course. Suffering with Hep C, lymphoma and Lyme, my patient is most troubled by Lyme.

One might wonder if chronic Lyme disease might itself be a risk factor for the cancer.

Hyperbaric oxygen therapy has been somewhat helpful but she still experiences a fullness in her ear and head which are very bothersome symptoms. She has only been treated for one month and we are hopeful that additional treatments will provide additional relief of symptoms.  She has only had 20 sessions.  My patients have done better with 40-60 sessions.

There is a high pressure vs low pressure HBOT controversy. Many believe that HBOT for Lyme is only effective with the higher pressures typically available with hospital grade chambers. Pressures of 2.4 ATA are generally recommended. This equates with a diving depth of 49 feet underwater. Others have suggested that lower pressures, typically 1.5 ATA, equal to about 17 feet under water may be adequate or better.

Soft portable chambers on the market generally employ a pressure of 1.3 ATA, about 10 feet under water. This is the FDA approved pressure for such devices. Many patients report excellent results with these devices and pressures.

My Hyperbaric device is a bit of a hybrid. Some portable devices are built to handle higher pressures although they are not licensed by the FDA for pressures above 1.3. My portable, extra-strong chamber has 3 settings: 1.3, 1.5 and 1.6. The highest pressure, 1.6 is the equivalent of diving 20 feet down. I have found that all three pressures are effective but the higher 1.6 pressure seems to be the most effective. As an example, it worked well for this patient.

Morgellons: case closed

I thought --  rather unexpectedly --  that a young graduate student working with Dr. Eva Sapi presented some ground-breaking results from her research looking into Morgellons disease. As she first pointed out, the disease is discounted by mainstream medicine and the CDC who call it delusional parasitosis. The mainstream belief in short is that patients with this illness are not physically sick but rather suffer from a psychiatric ailment. The young student (I apologize that I cannot recall her name) said her research delved into the Lyme-Morgellons connection. Essentially "scab" material  obtained from patients suffering with the disease, some of whom were sero-positive for Lyme disease, most of whom were not, was ground up and analyzed via molecular biology techniques looking for the presence of Lyme DNA. In all cases Lyme, B. burdorferi was found to be present. Specifically Bb sensu stricto, the North American version of the disease was present in samples taken from each patient diagnosed with Morgellons disease. In some cases, surprisingly, H. pylori, the bacteria associated with stomach ulcers and other related conditions was also found.

Perhaps of even greater significance was the finding that normal skin flora were essentially absent except for sparse S. epidermitis.

In some corners Morgellons  was already known to be Lyme associated (not previously proved) but connected to some yet undiscovered pathogen(s). The nature of the peculiar fibers has not yet been determined. The absence of other, usual bacteria in the affected skin would seem to indicate that another organism was secreting an antibiotic substance capable of eradicating normal skin bacteria. Another possibility is that another organism, whose DNA is unknown, assumes the niche inhabited by normal skin flora. The molecular techniques used in the study would not uncover fungal/mold or protozoal DNA.

Organisms that produce powerful antibiotics typically belong to the mold family as seen with penicillin. Anecdotally, there is evidence that the disease responds to agents used to kill protozoa, not mold. The mystery remains.

What I think is clear is that Morgellons is linked to Lyme infection in the skin; that is a distinct disease, not another presentation of Lyme like erythema migrans; that it is not a tick-borne co-infection; that although strange and mysterious, is not a disease from outer space as some have suggested; and most importantly, is not a delusion or hallucination on the part of the sufferer and/or treating physician.

One can only hope that these findings will be replicated in other research and put before authorities like the CDC who will then be forced to take this disease seriously, and perhaps Lyme as well (wishful thinking).

So we have one important piece of the puzzle, given to us (or at least me) unexpectedly, in a rather poorly attended seminar, from a young, somewhat diffident (and brilliant) graduate student, while most attendees were in another seminar.

OK -  the case is not closed. But we have a piece of the puzzle. This research will be published in a peer reviewed journal (probably PLOS) and this is very exciting news.

Chronic daily headache syndrome and the Monsters inside us

A 26 year old woman recently sought my opinion regarding her chronic daily headache syndrome. She had been to multiple neurologists, tried nerve blocks and been treated with every migraine/headache medicine under the sun. Nothing has ever helped. The headaches have decimated her quality of life.  She had a remote history of Lyme disease more than two decades before, first presenting as a toxic synovitis of a hip in a toddler. A course of antibiotics helped to some extent, but other "mystery" symptoms persisted. The headaches started in earnest 4 years ago and have only been getting worse. By chance, she came across my episode of (Monsters Inside Me)  and came to see me for a recent consultation.

Lyme serology is positive. From Quest the WA1(B. duncani) titer is positive, 1:256.

The Giemsa stain confirms the presence of active babesiosis: a potential cause of chronic daily headache syndrome.

Smearing and fixing must be done immediately. These procedures and staining require a great deal of expertise. These parasites degrade quickly in blood tubes and will not be found by outside labs because of this delay.

Lyme, Babesia, Bartonella - images - seeing an old friend

This 20 year old female has spent her life in particular town in outer suburbia where everyone sees to have Lyme disease. Over a period of many years, with many symptoms, she has asked for Lyme tests - which have always been negative, until now, September, 2013. The Lyme EIA titer was positive at 1.36 and 2/3 IgM bands were positive. Her doctors prescribed 21 days of doxycycline which has offered no help. She came to my office with her father and her boyfriend asking for my help.

Seven years ago a 14 year old boy was brought into my office. He had a distant, far off gaze. This former sports star and honor's student could no longer participate in sports and his grades went from straight As to Ds. This is a case I'll never forget.
He had a quiet, almost eerie "zombie-like" affect. His eyes were blank and vacant.  Early on I decided he had profound Lyme encephalopathy and aggressive therapy was called for. I started him on IV Rocephin. One, then two months later, he returned for follow-up care, unchanged. I remember feeling nervous about the case. In the third month I added IV Zithromax. He returned a month later: no change. With butterflies in my stomach I added Flagyl. He returned to the office a month later, month 5 of intravenous treatment. I was amazed. A switched had been flipped:  he was back. His eyes were bright and clear. This case left an indelible imprint on my psyche. But after the PICC line was removed I never saw him back. We doctors say he was "lost to follow-up."

My new patient's 21 year old boyfriend said: "Hey doctor do you remember me." It took me a minute, but then I recognized him, my 14 year old now grown up. The bright eyes were still there; he had now referred his girlfriend to me.

His girlfriend is very ill. She limped into my office with a cane. She was suffering with severe daily headaches. A neurologist had prescribed Topomax which seemed to make things worse. Of critical concern at the moment: she had lost 30 percent of her peripheral vision in both eyes over the last three months and the neurologist and eye specialist could not figure out why.

She had been sick for a long time, years. She had a plethora of symptoms. Some of the highlights include: severe fatigue, numbness, weakness, shooting pains, a diffuse chronic pain syndrome, night sweats, shortness of breath, air hunger, back, neck and joint  pains, loss of coordination, dropping things, loss of balance, confusion, memory loss, global cognitive dysfunction. Psychiatric symptoms including anger, rage, irritability, visual and auditory hallucinations. She also complains of sudden episodes of paralysis of her face and extremities.

Her neurological examination showed evidence of severe neuropathy and also a loss of proprioception. When I manipulated her big toes she could not tell if the toes were pointed up or down. This is an unusual finding only seen in cases of complex neuropathy.

Another word about her headaches. The pain was throbbing or band-like, behind an eye or across her entire head. The headaches typically occur twice daily lasting 4-6 hours rendering her non-functional. She had dropped out of college and also quit her part-time job. Daily headaches were fairly new over the previous 3 months.

Laboratory tests were remarkable for a positive antibody against B. duncani. Here are some images of her blood smear Giemsa stains. The slides show ample evidence of active Babesia infection. In the third slide below a small bacteria can be seen at the periphery of a red blood cell. This is characteristic of a Bartonella-like organism.

Chronic daily headache syndrome is a relatively new entity on the scene. At least some is due to tick borne disease. It is frequently written that Bartonella causes "ice pick" headaches behind an eye and that Babesia causes posterior headaches with muscle pain. Lyme can cause headaches as well.  I think it is usually not possible to tease out the exact cause of headaches in persons suffering with tick borne disease.

My approach to this patient is to treat Babesia but also start intravenous antibiotics. I think Bartonella will need to be addressed at a later point.

PS:  The boyfriend doesn't remember a lot about the time he had severe Lyme disease. He does recall walking in and out of rooms not knowing why.

Primary Lyme myositis

A 58 year old male referred to me in April, 2013 (by another physician). Symptoms were of 18 months duration. He felt well until one night he awoke with bilateral cervical and pain in both upper extremities. His LMD (local medical doctor) treated him with a course of NSAIDS which was ineffective. He was referred to rheumatologists who diagnosed a frozen shoulder syndrome and prescribed physical therapy which was initially beneficial. (the phrase LMD, although pejorative, is not as insulting as the appellation "provider").

Contemporaneously, he complained of severe fatigue, malaise, recurring shoulder pains and pains involving both legs. He developed pain and swelling in both wrists and ankles. A diagnostic work-up was pursued.

Results of tests:  thyroid functions normal; rheumatoid factor and CCP antibodies negative; ANA elevated titer 1:160, speckled pattern; RNP antibodies, Smith antibodies, Antiscleroderma-70 antibodies, Sjogren's  SSA and SSB negative, Antichromatin antibodies negative, Anti-Jo antibodies negative, Anti-Centromere B antibodies, ANA-D negative, dsDNA negative, Chromatin negative, SSA, scl-7 9 antiDNA topoisomerase negative, Centromere B negative, Jo-1 and nRNP  negative,  HLA B27 negative, RPR negative, Vitamin D normal, CK normal, Aldolase elevated (normal up to 7.6, result 13.8, CRP elevated 29.9. I apologize for some tests I omitted.

A test for Lyme disease showed an ELISA greater than 5, 10/10 IgG bands reactive and 2/3 IgM bands reactive.

A diagnosis of Lyme disease was made and the patient was treated with a three week course of doxycycline, 100 mg twice daily for 21 days. This was not helpful.

An EMG was consistent with a muscle disorder. A muscle biopsy was performed at a major University Hospital. The report read: "Inflammatory myopathy, nonspecific." "This pattern can be seen in dermatomyositis,...other systemic rheumatological disorders such as lupus or rheumatoid arthritis. Clinical correlation is essential."

The patient was treated by his rheumatologist with systemic steroids for several months without improvement. The Aldolase level (muscle enzyme) was unchanged.

The patient was seen by me 5 months ago, after more than one year of diagnosis and treatment from a major University setting, without benefit. Further laboratory testing per me was remarkable for a C6 peptide greater than the assay is able to measure.

I diagnosed primary Lyme myositis, a relatively rare condition in my experience.

Moderately aggressive therapy was initialed with a combination of oral antibiotics.

After 8 weeks the patient was feeling much improved. The pain and swelling were gone. Fatigue was minimal and he complained only of mild stiffness.

After 8 weeks, aldolase ( a muscle enzyme)  was in the normal range, 4.8. The CK remained normal. The ANA was entirely negative, slightly elevated before. The CRP was reduced from about 30 to 3.25(almost normal).

He was last seen at the end of September, 2013. He indicated that he felt essentially normal, especially over the past 3 weeks except for mild muscle stiffness. He denied any constitutional, other musculoskeletal or neurological symptoms and was back to his normal activities.

Repeat Lyme antibodies and C6 peptide are pending, ordered for academic purposes.

Repeat Laboratory testing showed a normal CRP.

Note: A group of rheumatologists did an exhaustive workup covering the academic waterfront for every known rheumatologic disease. The pathology report supported this approach.

The patient had been appropriatelytreated for Lyme disease according to the IDSA guidelines adopted by the American Rheumatological Societies. Therefore, although the diagnosis was not clear and the patient had not responded to appropriate therapy; it was clear the answer was not chronic Lyme disease;  a disease which does not exist as supported by experts in the fields of rheumatology, neurology, infectious diseases and evidenced based medicine based on peer reviewed studies published in the most prestigious journals.

Babeisa species blood smear from my office lab

I am presenting a series of images from blood smears from my in house lab. I find this to be a truly remarkable image.

 

I have treated this patient for severe, relenting disease for a period of two years.  She is on a second round of IV antibiotics. Progress has been slow. Night sweats, nightly fevers, air hunger, headaches and muscle pain have been prominent, persisting symptoms. She consistently tested negative for B. microti and B. duncani until recently. She now has  a high titer of antibodies for WA1 or Babesia duncani after numerous rounds of anti-malaria therapies. I am not sure she has B. duncani. I think she may be infected with a cross-reacting species. This sero-conversion as more commonly seen in Lyme Western Blots.  She has failed every regimen for Babesia. This smear was obtained which she is on IV clindamycin and quinine (which she tolerates well). This smear shows a typical Babesia "bowtie." This image was obtained from a fresh smear stained with Wright Giemsa.

 

 



Blood smear of BLOs from our office lab

 

Blood smear images from our office lab.

 



This Giemsa blood smear shows typical Bartonella-like bacteria. These are seen as small dots which color blue at the edges or just inside the red blood cells. These are larger than a Bartonella-like organism shown below in a different images. There are many species of Bartonella-like bacteria of differing sizes. These smears are an adjunct in the diagnosis of patients with tick borne illness. We are not able to speciate, (indicate a specific species) and antibody tests and PCR DNA tests are negative. We call these bacteria Bartonella-like but they really fall within the realm of mystery bugs.





 

Mystery blood parasites

Blood smears from my office lab reported as part of a series.

 

This image from one of my patients shows indeterminate findings. Parasitic organisms are seen within a red blood cell. Bartonella is frequently seen at the edge of red blood cells but is also found inside cells. These organisms are too large for typical Bartonella --  although there is a lot of variability in the size of differing species. These organisms cannot be identified as Babesia since they lack clear diagnostic characteristics. For now I have to classify these findings under "mystery bugs."  

 

 

Blood smear showing a typical Bartonella-like bacteria (office lab)

 

These images are from my office lab which now performs in house, diagnostic blood smear examinations for our patients. All of these images come from patients with negative serological blood test results.

 

This a  Giemsa stain from my office lab. The tiny dot at the bottom of the slide is typical of Bartonella-like organisms. These are typically very small. The bacteria stains dark blue.  Note, the larger purplish splotch indenting a red blood cell comes from platelets. The larger cell is a typical white blood cell called by various names, including: neutrophil, poly, granulocyte.

Babesia blood smear results

 

Blood smears are a great addition to the evaluation of patients with Lyme disease. The smears must be performed within an hour of drawing the blood.  I now include this procedure in my office as a routine part of the evaluation of my patients.

 

My next blogs will highlight a series of my blood smear results.

 

An 18 year old female presents with a complete inability to function. She suffers with severe, unrelenting fatigue, migratory joint pains of both small and large joints, brain fog -- and when asked: recurring flu-like symptoms, low grade fevers, severe night sweats and air hunger.

 

She has a longstanding history of learning disabilities as well as ADD and depression.

 

At age 5 she had a "spider bite" associated with a rash. In addition, her mother, a lifelong avid gardener, with a history of severe Lyme disease was likely infected during her pregnancy with my patient.

 

Her laboratory work was "CDC positive" for Lyme. Serological tests for B. microti and B. duncani were both negative.

 

This Giemsa blood smear shows typical findings of Babesia, confirming the clinical impression. There are numerous species of Babesia which cause human disease, some known and others unknown. It is not possible to "speciate" these findings.

Lyme in Atlanta

This patient is from Georgia. He used to a lot of outdoor work in his garden. He was also a frequent hiker on the Appalachian. He had a long history of tick bites which he thought were inconsequential. In 2007 he developed disabling pains of his arms and legs to the point that he was unable to walk.  He saw a neurologist who performed various tests. An EMG showed a severe polyneuropathy, motor and sensory. He experienced numbness and tingling. He experienced difficulty swallowing; episodes during which he was unable to speak and episodes of muscle paralysis. His muscles would suddenly go into acute spasms associated with myoclonic jerking and fasciculations. He went on to develop a host of other symptoms. Some of these included: emotional labiality, a loss of balance, unremitting tinnitus, extreme sensitivity to both light and sound. His skin became extremely sensitive to touch and he experienced a heightened sense of pain whenever his skin touched something. In fact, he has not had a repeat EMG because of intolerable pain.

He saw a variety of neurologist who ordered a multiplicity of other tests including MRI scans and EEGS which were of no benefit. After some time, he was not longer to walk progressing from cane to wheelchair.

Joint pain became prominent. He experienced pain and swelling in all his small joints, medium joints and large joints. He also developed pain in his cervical and lumbar spine areas.

On further questioning symptoms now include: fatigue, night sweats, air hunger, brain fog, trouble articulating words, forgetfulness, inattention, drooping of one side of his face among many others.

Doctors claim there is no Lyme in Georgia.

Let me take a step back. In 2009 his wife suspected he had Lyme disease. She was able to find a doctor who, over a course of years, treated him with antimicrobials including: Minocin, Zithromax, Flagyl and Malarone. The treatment was somewhat effective. The same symptoms were present but had lessened, maybe 30%.

Six months ago a new doctor, taking the place of the previous one refused to prescribe any more antibiotics. Over this period of time symptoms worsened dramatically.

When he saw me there was a desperation to find a doctor who would continue to prescribe medications.

The diagnosis of Lyme disease had been empiric. Lab tests had always been negative.

When I examined him he appeared chronically ill. Most notable, when I asked him to squeeze my hands to test his strength -- always a part of my exam --  his hands became locked in a spasm with every increasing pressure applied to my hands. My hands were stuck and beginning to hurt.  I did not know this is possible. I had to call my assistant to help pry open his fingers so I could remove mine.

He had never been treated with IV antibiotics and I felt this should be tried right out of the gate. So I ordered some lab tests.

A Lyme WB from Stony Brook found only a 64 IgM band and a 58 IgG band. This was frustrating. A WB sent to IgeneX found only a 58 IgM band and a 41 IgG band. I hit pay dirt with labs sent to Labcorp. The C6 peptide ELISA was 1.34 -- clearly positive for Lyme. In addition, serology for Rocky Mountain Spotted Fever was also positive.

My initial impressions included: Lyme, Babesia, Rickettsia organism. I ordered: Rocephin, Doxycycline, IVIG, Tindamax and Coartem.

I saw him at follow-up a month later. He had only taken the doxy, Tindamax and Coartem. The IV Rocephin and IVIG had not been approved. Nonetheless, he reported feeling significantly better. Surprisingly better.

Another test showed an immune deficiency. His total IgG, and subclasses 1 and 3 were low as was his IgM.

Additional comments:

I diagnosed CIDP clinically. He had pain, weakness, marked sensory/ motor abnormalities and absent deep tendon reflexes. The neurologists would not consider the diagnosis without another EMG which he is unable to have. Of note, he has a complete absence of reflexes: this is something neurologist love to see to make this diagnosis.

If his local doctors were not buying the CIDP diagnosis there was clear evidence of an immunoglobulin deficiency typical of Common Variable Immunodeficiency Syndrome. This diagnosis was also not made back home. Generally with this diagnosis it is possible to have subcutaneous Ig approved.

He has now had two sessions in my hyperbaric chamber. He is doing surprisingly well.

This case underscores the importance of treating clinical babesiosis. In this case I went straight for the big gun: Coartem. This seems to have paid off.

The positive test for RMSF might reflex some cross-reacting Rickettsia, less virulent than RMSF. He had never been prescribed doxycycline previously. The addition of this medicine may have been important. Don't forget to take doxy at some point during therapy.

I am hoping hyperbaric oxygen therapy will do for him what I thought IVIG would.

A key lesson in this case is: don't forget to order the C6 peptide. 

2013: A Brief update

Certain posts consistently have a lot of page views. This includes 2010: a brief update.  I don't agree with my 2010-self in many ways. Here is another update.

Update 2013

Testing:

The diagnosis of Lyme disease remains clinical.  The primary test for Lyme disease is the Western Blot, (WB).   An ELISA may be ordered (as a separate test) as long as it is not “reflexed” to a Western Blot.  The C6 peptide ELISA is always ordered, but not interpreted according to Immunetics criteria.   Western Blots are generally sent to one of several reference laboratories. I currently prefer Stony Brook because they take insurance and their assay includes many additional bands. Frequently, WBs are sent to two reference labs.

I do not order a lot of immunological tests like C4a because I have not found these tests to be clinically useful.

A typical coinfection panel includes serology for: Ehrlichia, Anaplasma, Bartonella, Babesia microti, Babesia duncani (still frequently called WA1). I may include Rocky Mountain Spotted Fever as well as a few others.  Positive results are very helpful but negative results are neutral and do not exclude the presence of disease. A thin stained blood smear should be considered in the workup because Bartonella-like and Babesia-like organisms may be seen. More advanced microscopic tests may be performed but are not standard.  Immuno-florescent microscopy. e.g. FISH) may be helpful in some cases.  Blood cultures may be very useful.  The test is costly and positive result requires a PCR for confirmation.  PCR testing may be done with cord blood to exclude placental transmission to a new born baby.  PCR should be used with non-blood body fluids such as joint and spinal fluids. Antibodies should also be measured, i.e. WB, C6 peptide.

Antimicrobials:
 

For the treatment of resistant Babesia, Coartem should be used rather than Larium as the next step. I generally avoid quinolones such as Levaquin and Factive because of tendon toxicity. Bartonella species may become rapidly resistant to quinolones: Biaxin/doxycycline/Bactrim/Cleocin in combination with Rifampin is a better approach. Rifampin should never be used alone because of the rapid onset of resistance. I left Zithromax off the list, which I still frequently prescribe, because it may have greater cardio-toxicity.

A wide spectrum of intravenous antibiotics may be used.  Rocephin and Flagyl remain very important.

Biofilms formation is an effective strategy for long term survival of microbes. 

This segues into hyperbaric oxygen therapy which disperse biofilms. I have written about its effectiveness and usefulness elsewhere.  I try to incorporate Hyperbaric oxygen therapy, HBOT, when feasible, especially in tough cases.

 

IVIG may be incredibly helpful but is usually only be approved for certain types of neuropathy.  A skin biopsy sent to Therapath, looking for small fiber neuropathy is now an important part of my practice.

An evaluation of immunoglobulins, including IgG subclasses has become part of the typical workup. Deficiencies are very common.

Triple Whammy

Sometimes a patient doesn't see it when it is so obvious to others.  That's the way it can be with slow and steady progress. 

I have known this patient for 7 years.  When I first met her she was on death's door.  Her prior doctor had given up and told her there was simply nothing else he could do. I treated her for a time. There were some ups and downs with one life-threatening event. I certainly hadn't given up --  but one day she was gone. Like many other critically ill patients, who never give up and whose disease is relentless, she had made the rounds. She had seen three other well known doctors who had been unable to help her. Then she completed the circle and made another appointment in my office. She walked through my office doors about 4 months ago for the first time in as many years. She was in a wheelchair:  unable to walk because of weakness. Communications were difficult in part because of strange, what I call, chorea-form like, jerking movements about her face, head and neck. Like many other Lyme patients she exhibited strange, uncontrolled, body movements outside the realm of standard medical diagnostic groups. Other physicians invariably diagnose a psychological basis for the movements. 

But that was not the only reason communication was difficult. Her speech was severely slurred (dysarthric); she lacked adequate muscle control of muscles of her tongue and mouth making it impossible to enunciate clearly. To make matters worse, she was severely cognitively impaired. She lacked the ability to put words together in proper sentences. This is what we call aphasia. Her thoughts were scattered and very difficult to make heads or tails of. She looked sicker than I remember the last time I saw her.

When I see patients like her, now, I go down the short list of aggressive therapies which might help. First there is IV antibiotics. She had been on numerous drugs for many months without much improvement. Then I think immunotherapy. Getting it approved is the trick.

Lyme is a multisystem disease. It is also a multisystem, within a system disease. When it affects the nervous system it generally effects multiple components. The nervous system is extraordinarily complex, but following the KISS, principle, for the patient and myself, (Keep It Simple Stupid) I break down the nervous system into a few basic components. The central nervous system consisting of the brain and spinal cord. The cranial nerves, a dozen nerves branching  directly from the brain. And the peripheral nerves: everything that branches off from the spinal cord, including motor, sensory and autonomic parts.

The brain being the preeminent piece of the central nervous system (CNS) can be assessed with MRIs, PETs, SPECTs, other imaging modalities and paper and pencil tests. The autonomic nervous system is best assessed with a tilt table test looking for POTS. The peripheral nervous system has traditionally been evaluated by electrical testing, (NCV/EMG). But now I have another modality.

Her EMG test was normal but I still thought she had a problem with her peripheral nerves. I performed a skin, sweat biopsy test which looks for something called small fiber neuropathy.

The lab sent us a report saying it was essentially the worse looking SFN they had seen. Bingo. Her insurance company approved her for IViG, the best immunotherapy available.

Insurance companies will only approve the $10,000.00 dollar every three week treatment if you can convince them you have one of a limited number of progressive peripheral nerve disorders. This is not an easy feat.

The third item on my short list was HBOT, Hyperbaric oxygen therapy. I have written some about HBOT already and so far I am very impressed.

Now her treatment consists of 1) antibiotics, 2) IViG and 3) HBOT.

Today she walked into my office under her own power. Her speech was clear and easy to understand. Her eyes were clear and her thoughts were completely cogent.

This is not to say she does not have some other, very serious problems which we are working on, and expect to continue working on for a long time to come.

Today, she really didn't get it. She had no clue how far she has come.

Her transformation is beyond words, so far.

Incidentally, we doctors are all used to patients trying other physicians. I would if I were you. We expect this. You should never feel embarrassed going back to a previous doctor. The doctor is (usually) happy to see you back. We doctors do things differently. Sometimes one will have more success than another.

Detox

Patients frequently ask me about "detoxing."  As an allopathic physician I have generally scratched my chin and have had little to offer.

The first question is:  what are toxins; where do they come from?

Let's face it.  Our world in many ways can be described as a toxic soup.  Most toxins come from things we eat.  We are constantly barraged by a host of chemicals: insecticides, pesticides, mycotoxins, biotoxins, industrial waste, heavy metals, ingredients on food labels we can't read, genetically modified foods etc... Our air is so toxic that oxygen bars exist in some countries.

We know that many of these toxins are poisonous and many have the ability to cause cancer.  Some fat soluble toxins will never be removed.

It is not surprising that patients want to be detoxed -- especially when they are chronically ill.

The first common sense thing is to limit intake of toxins as much as possible. This means spending a lot of money on organic foods. It is hard to get away from polluted air outside. But we can frequently remedy indoor sources of  toxins, such as toxic mold.

If we keep ingesting toxins there is no point in detoxing.

We have two organs which are incredibly effective in eliminating toxins: liver and kidneys. First and foremost, we should do everything possible to protect these vital organs.

The three most common causes of kidney failure are: diabetes, hypertension/atherosclerosis and chronic use of pain medicines such as Tylenol. These issues should be taken seriously -- a discussion of which is outside this blog.

We frequently abuse our liver with alcohol. We can also damage our liver when we take multiple drugs that require the same enzyme for detoxification. Your doctor/pharmacist should always check for drug interactions.  We need to be careful when we take medicines that are known to be toxic to the liver. For example, the use of statin drugs for cholesterol many be toxic to liver and muscles. These drugs may be medically necessary;  patients and their doctors should consider all factors on a case-by-case basis.

We need to make sure we intake adequate amounts of minerals. For example, selenium is required for function of our most important antioxidant, glutathione.

Glutathione is an essential antioxidant and detoxifying compound found within our cells. Glutathione levels decrease with age and can be depleted in the chronically ill.
Many patients get IV glutathione in doctors offices which appears to be beneficial, but the effects are short-lived. Glutathione is not absorbed when taken orally. However,  liposomal glutathione is available and has good oral adsorption.

In the world of alternative medicine many supplements are recommended to help with detoxification. Some include: SAMe, flavonoids, green tea extract, various fruits and vegetables, milk thistle and many others. There are too many to list.  Some tout the benefits of burbur.  This is outside my scope of practice, but I believe some of these therapies are helpful.

Coffee. Some people use coffee enemas.  I don't like the sounds of it.  There is evidence that coffee has clear liver protecting properties but I prefer to take mine by mouth.

Probiotics and gut flora are important.  Toxins may be removed in the colon.  Regular bowel movements are important. Chronic constipation should be avoided. An adequate fiber intake is key.

Some people think that chelation is helpful.  This therapy removes heavy metals. There are a number of ways of accomplishing this with IV and oral therapies.  This is a particularly controversial topic:  one I wish to skirt around.

Quinolinic acid is a very important neurotoxin.  My best bet has been to remove it from bile and excrete it though the gut with medicines like cholestyramine or Welchol.  Quinolinic acid is associated with  glutamate modulated excito-toxicity. The drug Namenda, used for Alzheimer's disease, may help mitigate this effect. Other strategies  are emerging.

My common sense approach regarding diet is to look at societies with the healthiest people and the highest per capita rates of residents over 100 years of age.  This occurs on a Japanese island and a Greek island.  Both have a low intake of meat and fish/seafood is the primary source of animal protein. The primary starch is either potatoes and coarse bread or rice. The diets incorporate fresh greens and legumes: chick peas and lentils in one case and soybeans in the other. Cow's milk is not used in these diets. However, goat milk products, including yogurt and cheese are used in the Greek diet. The composition of goat milk is similar to human milk. Sugar is not used, but honey is part of the diet. The Japanese exercise vigorously: the Greeks have no formal exercise but walk up steep hills and sometimes dance. The Greek diet incorporates fresh olives and olive oil.  Both drink teas (and coffee). Some consume moderate amounts of alcohol. Artificial beverages and sweeteners are not used: the same is true for sugary/fructose syrup, American style beverages. Both groups live on an island with perfect weather and are happier than we are. Incidentally, women live longer on Okinawa and men live longer in an island in Greece.

There are some treatments I am sure do not work. The most notorious is foot detox.  Here feet are bathed in an electrolyte solution and a gentle current is applied. The water turns brown and pieces of metal show up; the patient is told he/she has been detoxed.  It turns out that the process causes oxidation and electrolysis of the metals in the electrodes. The exact same effect is seen when no feet are placed in the bath. "And now for my next magical trick...." On the other hand, I am sure that foot baths are very soothing and promote relaxation; just don't shell out bucks for one.

Biofilms: hyperbaric?

Biofilms have long been a concern for Lyme patients. 

One reason for persistence of infections, including Lyme disease is the existence of Biofilms. It should be known that this is nothing unique to Lyme. Other pathogenic bacteria, for example, pseudomonas are known to exist within biofilms. Bacteria in biofilms are reported to be up to 1000X more resistant to the effects of antibiotics than free floating bacteria. Free swimming bacteria are called planktonic which distinguishes them from bacteria contained within a biofilm. Biofilms are composed of colonies of  bacteria and protozoans that are protected by a mucopolysaccharide covering as well as bits of DNA and other molecules. Biofilms are not limited to one species. Numerous species can live within the same structure.

Bacteria within biofilms somehow communicate by a process called quorum sensing. They communicate back and forth to "discuss" the best strategies for survival and expansion. The group as a whole develops a sort of "collective intelligence." There are many other examples in nature of a similar phenomenon, for example, the collective brilliance of an ant colony. Bacteria, the first life forms on the planet, have been around for 4.5 billion years and we have only been here for one hundred thousand or so. That may explain why bacteria through a very lengthy process of evolution, are so smart. Lyme bacteria within these structures are in a quiescent state of suspended animation. Every now and then, when conditions are ripe, a segment of the colony may break off to colonize another region, or release some bacteria in a planktonic (free swimming) state.

One of the "Holy Grails" in Lyme therapy has been finding a way to break down biofilms. Herbs have been tried which use enzymes to break down protein (proteolytic). I am a  skeptical since there is no likely no effective way of delivering the proteins to the targets --  and because they are targeting the wrong thing since biofilms are not primarily comprised of protein.

Hyperbaric therapy, in addition to producing reactive oxygen species, also produces reactive nitrogen species. One of these products is nitric oxide. The effects of this compound are complex and protean with literature that goes on forever. But one demonstrated effect is the dispersal of biofilms. This may be of additional benefit.

Hyperbaric update

Lots of questions about my experience treating my patients with low pressure hyperbaric oxygen therapy.

I have only been using this treatment for a few weeks. I have started all of my patients at a pressure of 1.3 ATA, breathing 100% oxygen. All patients have experienced Herxheimer reactions, of varying degrees.  I am not yet seeing much clinical change in my sickest patients (who have completed two weeks). This is not surprising; but I hope to hear good things after a month or more.  I am hearing good things from moderately ill patients already, and this is very exciting.  Of course I cannot rule out the placebo effect. Some patients have reported significant improvements after only 4-10 treatments. Improvements include: rapid wound healing (not a surprise), less joint pain, more energy, less brain fog, less headaches and a greater overall sense of well-being. Changes in function ability have also been reported. One patient reports a tremendous increase in energy and endurance.

A couple of patients have had rather severe Herxheimer reactions characterized by severe fatigue. In these cases I have lowered the frequency of therapy.

My sense so far is that HBOT is like many other treatments: results are variable and treatment programs need to be adjusted.

I suspect that therapy is going to be prolonged for most patients.  I think a 3 day per week schedule will help but may take longer. Perhaps more time in the chamber will help.

A lot of benefits have been described for low pressure HBOT.  Currently I am using 1.3 atmospheric pressure which equates with swimming about 11 feet underwater.  I have supplemental valves which will allow me to raise the pressure to 1.5 ATA, equal to  swimming 18 feet underwater. I will try different pressures with patients to see what works best. 1.5 ATA is the upper limit of what is generally considered low pressure.

There is an argument that low pressure is better than high. A primary mode of action of HBOT is the generation of reactive oxygen species. These compounds are oxidants, not anti-oxidants. At lower levels they reduce inflammation, kill bacteria and promote improved functioning of the immune system. It is possible that excessive amounts of these compounds may have a toxic effect. (I do not know if this is true; I have only read about it).

Does low pressure HBOT work? I think so. Maybe I said this before. All elite athletes own and use HBOT units, finding better recovery from work outs with a lot less muscle pain.  I hear some athletes even sleep in them; but the consensus is that this is likely not a good idea. Home chambers do not exceed 1.3 pressures based on current FDA allowances (which is being challenged).

Ceftin in the summer and Mycoplasma

Doxycycline is the standard first line drug for Lyme disease. During the summer because of reactions to sunlight we frequently prescribe either amoxicillin or Ceftin. These drugs as mono-therapy are inherently problematic. They have no activity against a number of co-infections, such as Anaplasma, Ehrlichia, Bartonella and Babesia. Doxycycline may have a modest effect against both Bartonella and Babesia, particularly early on.

There is another germ which I have underplayed and may be highly significant. Mycoplasma. Most Mycoplasma species are not tick borne but M. fermentans can be tick borne.  Other common species of Mycoplasma include: M. pneumonia, M. penetrans, M. hominis.

Mycoplasma bacteria are the smallest living organisms known: most don't consider viruses living. These tiny microbes are cell wall deficient and can survive only within cell

Most doctors are only familiar with M. pneumonia which is associated with "walking pneumonia." Another variant is associated with an STD.

I am looking at a review article by Endresen.  Evidence is presented that Mycoplasma is highly associated with chronic fatigue syndrome, fibromyalgia and Gulf War Syndrome.

There is a trend in medical literature to claim that fibromyalgia and chronic fatigue syndrome are one and the same disease.

Other papers has shown a clear relationship of Mycoplasma with inflammatory arthritis, including rheumatoid arthritis.(not mentioned here).

He  reports that patients with more than one species of Mycoplasma detected have disease of greater severity.

It is interesting:  he discusses Mycoplasma as a potential coinfection in patients with CFS/FMS and mentions: Chlamydia, brucella? enteric bacteria like Proteus? and various viruses.

I think Brucellosis has been causing a chronic "Lyme-like" disease for decades before Lyme came on the scene. This is certainly not a mainstream view. 

Why couldn't he mention the "L word."  Is it that much of a third rail for academic researchers?

He even talks about treatment. He discusses the use of Minocin, Cipro, Biaxin, Zithromax but downplays the role of doxycycline.

It seems this has something to do with a clinical trial sponsored by the US defense department study of veterans with  Gulf War Syndrome treated with doxycycline for one year.

We know that Garth Nicolson has strong views on the topic.

The author believes that short courses of antibiotics are frequently associated with relapse and that one year of treatment may be required for recovery.

Once again, long-term antibiotic therapy may be acceptable as long as it is not for Lyme.

Mycoplasma should be considered a potentially significant player and I suspect that doxycycline works as well as minocycline and that antibiotics need to be used in combination for effective therapy.

Another Lyme: B. miyamoto

From the CDC, New England Journal of Medicine and Columbia University (Brian Fallon) --

Deer ticks, Ixodes scapularis carry another Lyme like bacteria. It appears to be a nasty spirochete in the Lyme family.  No test is currently  available:  Borrelia miyamoto.  We have known about this germ since  2001. It caught the attention of health authorities: a study published in the New England Journal of Medicine reported 21% of 14 patients evaluated in a Lyme clinic in Southern New York, with only flu-like symptoms, tested positive. (We do not have the test yet).  Some patients sero-converted.  The opposite of STARI, which gives a bulls eye rash, this spirochete does not cause EM (Lyme rash) but presents with  flu-like symptoms.

It may cause cases of a sero-negative illness which may resemble chronic Lyme disease according to Dr. Brian Fallon as reported on CBC July 2, 2013. 

A test is only available to researchers and the CDC.

Yes, as many have said all along, the diagnosis of Lyme disease is based primarily on clinical grounds, not laboratory data. What else don't we know?

Lyme and killer headahce

 

My 52 year patient felt she was a failure in life when she saw me 5 years ago.  Before that (in her previous life) she was living the "American Dream."  Gregarious, vivacious and outgoing  -  she was the life of the party. Barbecues on the deck were a regular occurrence. To escape the stress of daily life and raising three kids she was passionate about her hobby, gardening.  She was frequently seen pruning and trimming her exquisite landscaping, the envy of all, late into the night. Then at age 44 she developed headaches, diagnosed as migraines. It seemed odd that migraines would suddenly appear in midlife --  and there was no family history of migraine. The headaches became more frequent and unbearable. They robbed her of all quality of life. She went to numerous doctors ultimately ending up in pain management taking narcotics which barely took the edge of her progressing misery.

The parties stopped, as did the gardening. She could not work or help the kids with their homework. She had other symptoms too. She had drenching night sweats and trouble moving. It was an effort to move her legs to get out of bed in the morning. Her body hurt: her hands started swelling. She wasn't just tired. Words don't describe the crushing weariness she experienced. She just wasn't thinking as clearly as she used to. Her once sharp memory was now dull, and getting duller. She became depressed. Antidepressants offered little relief: at times she contemplated ending her life.

What the hell was wrong with her she thought. A neighbor still gardened avidly and went to the PTA meetings. She had simply fallen to pieces. She thought she was weak, a failure and somehow it was her fault. Doctors pretty much told her as much.

When she finally shared with me what had been going on I asked her if she knew anything about Lyme disease. She did not.

Let my digress for a moment.  Now that I "specialize" in Lyme I can no longer help others like her  --  falling thorough the cracks or perhaps off the cliffs;  caught in a medical system which is blind and deaf.

Ultimately I convinced her to proceed with my recommended treatment for Lyme disease.  It helped. But she never took the medications long enough because of side effects. Despite suboptimal therapy, sweats got better as did the brain fog. Fatigue and depression were a little better.

Headaches --  not so much.

Over the last year, at my behest,  she has been receiving Botox injections every 3 months. She is better but the headaches are still killers. This means there are fewer trips to the ER and less days in bed.

I talked her into trying hyperbaric. She went in despite claustrophobia. Only one day later, she felt miserable with a Herheimer, lasting 3 days. One week later she reported  her headaches are better and she is very excited about continuing hyperbaric oxygen therapy believing this may be the final bullet in the war against her migraines.

I am also hopeful that the combination of hyperbaric oxygen and low dose antibiotic therapy, which she is able to tolerate, will get treatment for her Lyme disease back on track as well.

Is STARI Lyme?

I will got on a limb; I think a short branch.  Lone star ticks transmit Lyme disease. My patients have pointed this out to me for quite some time.

 We have to ask the question, what is Lyme disease?

The answer is a little complicated.

Willie Burgdorer discovered the famous spirochete granting him "medical immortality." The spirochete we associate with Lyme is Borrelia burgdorferi. Over the past few decades the Lyme epidemic has spread throughout the US and become global.

But not all Lyme is the same.

Our standard Lyme germ is designated strictly Lyme:  B. burgdorferi (sensu strictu). Other forms of the bacteria causing Lyme disease(or something like it) are still called Borrelia burdoreri even if when they are a different species of Borellia. We do this by adding the suffice "sensu lato," meaning it is Lyme in a looser way. So bacteria with names like: B. garinii, B. afzelli, B. japonicum are called Borrelia burgdorferi (in the looser sense).

Normally a bacteria is only allowed to have one species name.  Scientists are particular about the way the group living organisms in a particular taxonomy.  KINGDOM, PHYLUM, CLASS, ORDER, FAMILY, GENUS, SPECIES.  Strains are variations within the same species.

With Lyme disease, we have made an exception and attach an extra species name in honor of our friend Willie Burdorfer.

Mainstream medicine informs that  STARI or Master's disease, caused by the lone star tick is no cause for alarm because it is not Lyme disease.

The particular bacterial cause of STARI has at times been elusive. But, some species of Borellia have been identified in STARI cases.  The first was B. lonestari , currently not considered one of the Lyme sensu lata species. More recently two Lyme "sensu lato" species have been connected to STARI:  B. adnersoni and B. americanum.  So STARI can be Lyme even by the CDC definition.

I think they need to update their website.

The rash seen with STARI is more dramatic than that seen with standard Lyme is more like to cause the classic "bull's eye" appearance. In other words: STARI is more Lyme than Lyme --  at least with regards to the rash.

Maybe STARI explains some sero-negative Lyme disease.

STARI is said to be milder than Lyme. Are we sure?

Anyway, it seems to me that B. lonestari should be part of the Lyme sensu lato family.

But we are cautioned to avoid bites from the lone star ticks because this may lead to meat allergy. True.

As Ixodes scapularis (deer tick) invades from the north and Amblyomma americanuum invades from the south, they both converge here, in the mid-Atlantic. 

It can be hard to tell the ticks apart.  Adult female lone stars have a distinctive white spot on their backs.  Nymphs cause most disease and are hard to tell apart.