Lyme Disease & Arrhythmia

Lyme Disease & Arrhythmia



A man should look for what is, and not for what he thinks should be.
—ALBERT EINSTEIN (1879–1955)



Recently, in the General Health Forum, Todd offered a link to a documentary on Lyme Disease titled, Under Our Skin. Every person and especially afibbers should view for awareness. Lyme disease is known to contribute to a variety of neurologic and heart complications including atroventricular block, bundle branch block, carditis, decreased contractility and energy conduction interferences as in arrhythmia

My awareness message today is to report that early last August, I was diagnosed with Lyme Disease. What began as a routine, semi-annual visit with my Functional Medicine MD eventually put my peaceful, calm heart back into that dreadful, periodic chaos. Fortunately, I am a veteran afibber and know that rocky road all too well. The Under Our Skin documentary is well done and points out the pitfalls of treating Lyme and the political cover-ups putting dollars before treatment concerns. My heart goes out to everyone touched by Lyme. I am not suffering nearly as profoundly as those in the documentary and for that I am humbly grateful. If you met me today, you would not suspect be suspect. Details follow.

Forum readers may recall that I often say that Afib is our ‘canary in the coal mine’ or an indicator that something is amiss in our body so we are forced to ferret out what might be contributing to the symptoms of atrial fibrillation. I’m now inclined to think that for me, the damage done by a much earlier Lyme infection, now either gone or latent, lies at the heart of my new, recurrent onset Afib. It would explain a lot.

First, for those who haven’t viewed the video, a bit of background on the prevalence Lyme Disease. Lyme and Lyme Co-infections are epidemic in the US and highly prevalent in parts of Canada. The same is true in Europe but with different strains. Only recently, the alarm for recognition has been sounded. Even more alarming are reports refuting the prevalence of Lyme indicating mainly select focal cluster areas where exposure is prevalent which leads to complacency on risk of exposure and worse-- misdiagnoses.

There is a disconnect between identifying Lyme Disease (LD), reporting Lyme and treating Lyme. Testing can be vague and inaccurate so thousands of cases go unreported to the CDC; thus, many thousands of cases remain officially ‘under the radar.’ This appears to be intentional and as the video indicates, may be the coverup of the century.

Lyme Specialty Labs are now operational; yet few physicians know of or use them. And, they fight technicalities about FDA approvals adding to diagnostic confusion and questions on insurance coverage. There are doctors known as Lyme Literate MDs (LLMDs) specializing in Lyme treatment….but they walk a fine line between treating patients and losing their licenses for doing so. Lyme is an expensive disease to treat and is typically a lengthy process which requires various antibiotics for long durations which, for some reason, is met with official alarm and resistance and can lead to investigations and loss of license. (Yet many other ailments are treated indefinitely with antibiotics… Rheumatoid Arthritis, Multiple Sclerosis, COPD, Cystic Fibrosis, acne, joint pain… without a thought to yanking the prescribing physician’s license.)

The intent of this post is to alert afibbers to the high prevalence of Lyme Disease and the fact that Lyme does cause arrhythmia…. not to attempt to sort out the politics of Lyme Disease.

Lyme is a stealth disease and is both chronic and acute. It’s a complicated bacterium with cyclical periods of activity and remission. When Lyme is in remission (cyst form), it is protected from treatment meds so killing is limited to active cycles although treatment is full-time. Lyme is damaging to the nervous system -- to the myelin sheath and heart conduction system-- and can be debilitating. Often ailments such as ALS, Parkinson’s, MS, Alzheimer’s, severe Chronic Fatigue Syndrome, Fibromyalgia, joint pain and various neurological symptoms (Bell’s palsy and Bi-polar disorders) are treated as such and alarmingly often are not linked to Lyme as causative. When these patients are treated for Lyme, a surprisingly high number improve and live normal lives. Lyme infections are linked to autism.

Lyme Disease mimics more than 350 diseases, several of which may have been present before the onset of Lyme Disease and may have even predisposed the patient to developing Lyme Disease. Some of the disease processes that mimic Lyme Disease can be brought on by chronic illness and therefore may have been caused by the Lyme infections. Many of these co-conditions make it much more difficult for a patient to get well after all of the Lyme microbes are gone. (Cowden & Strasheim)

The Bull’s Eye Rash symptom is the first thing most people including physicians think of when Lyme is mentioned. In reality, the rash occurs in less than 30% of cases although the literature frequently indicates a higher percentage. This alone leads to misdiagnosis and under-reporting. People are asked if they had the rash and if the response is negative, then the doctor dismisses the need for further testing…relying that a rash is a cardinal sign when that’s just not the case.

Lyme is typically thought to be carried by ticks and spread by the deer population which is true but other vectors are in the mix. Lyme carriers include mosquitoes, black flies, small woodland animals, rabbits, squirrels, birds and any pet that picks up a tick or the offspring called nymphs. While ticks are typically visible on humans and pets, the nymphs are as tiny as the period at the end of a sentence or a poppy seed and are responsible for most of the exposures. The official bacterium of LD is Borellia burgdorferi…a spirochete which transforms once inside the body from spirochete form to a cyst form when it hides deep in white fibrous tissue where circulation is poor. It cycles in and out of form and in and out between active and remission, making treatment difficult.

Garry F. Gordon, MD, DO, MD(H) recently wrote : Who really has Lyme? Does it really matter? We all have some infection, if not Lyme, then chlamydia, candida or cell wall deficient organisms because our immune system is compromised by the load of toxins and useless food and defective life styles. So let's raise the general health of our patients and not just rely on killing the offending organisms.

Dr. Gordon included a report from American Heart Association Journal Circulation and says: "this shows that they know very little about Lyme. I use this article only to warn you how out of touch the "authorities" are on this topic so you stay out of the line of fire. I say this because knowledgeable experts at NYU Medical Center on Sirius satellite channel 81 going to an estimated 300,000 listeners, as Dr Radio have pointed out that it is nearly impossible to prove someone does not have Lyme in some of their prior broadcasts since there really is no one definitive test. And since Lyme clearly does not require a tick or a rash or a bite, so maybe you have Lyme? Again, if we agree you do have some chronic infection dragging you down; let's look at how to make you feel as good as I do in my practice.”‘

Encouraging words. Or are they?

My AF experience with Lyme Treatment
I’ll share briefly my saga as it pertains to recurrent Afib. The most important information I can give you is the knowledge that Lyme disease exists and infections are highly prevalent throughout the entire US, parts of Canada as well as Europe. And, it can contribute to arrhythmia…not in everyone, but definitely is a recognized complication.
(Repeating this for emphasis)

My experience is that it did not cause this new arrhythmia breakthrough until I was weeks into aggressive Lyme treatment. For afibbers who are struggling without relief to reverse their afib no matter what they try (including. ablation), it makes sense to rule out Lyme infection …or as Dr. Gordon indicates, find out what other infections are causing interferences.

In my case, there is no way to be sure but since the symptom of AF is connected to Lyme, it is very possible and most likely, highly probably that my initial onset of Afib nearly 18 years ago was stimulated by an earlier Lyme exposure. I did not have the rash.

As you might surmise, upon learning my diagnosis, I launched an intensive research investigation. My Lyme Library is overflowing. Of tremendous value is a CD series from a three-day Functional Medicine Seminar with various experts on Lyme and Co-infections. There are many reports, books, blogs, YouTube clips and formal videos and eventually, I was on total overload. Very depressing. Thanks to the help of Erling, who burned the midnight oils researching online, I was led to several highly-informative and very helpful blogs where Lyme victims shared various treatment experiences and I was able to correspond with some of the LD veterans, much as we do here at Afibbers.

The diagnosis of my Lyme infection simply happened as the result of a routine appointment with my FM MD who every so often, orders the NutrEval nutritional assessment from Genova Diagnostics. Since the last was two years prior, I was due.

I had no major complaints to report other than noticing that I had become consistently fatigued by mid-to-late afternoon and I allowed myself to excuse that as ‘advancing age.’ At the previous visit (Fall 2011), my fibrinogen level was elevated and of some concern, but I increased Nattokinase dosing and didn’t think much more about it. Heart continued to be calm.

NutraEval test results in the Dysbiosis segment indicated an elevation of 3-Hydroxyphenylacetic Acid so she wanted that clarified with more labs that day. When those came back a few days later, her office called to request I come in immediately for review. I recall thinking at the time, “What now?” By August 9, I had a diagnosis that turned my world upside down. I tested positive-- 3 bands for Lyme and one band for Epstein Barr Virus by Lab Corp Western Blot. Several of the co-infection markers that used to be standard in that test have been pulled from that panel… possibly to make more money by requiring separate tests or more likely because the complete screen was too “conclusive” as diagnosis. Since I had 3 positive bands, I didn’t opt for the separate tests. There is no way to determine if the bands are current or are residual markers from an exposure long ago.

Since I’m fond of quoting Wayne Dyer’s famous observation….”There are no co-incidences,” my thoughts immediately focused on a recent teleconference by a Lyme specialist in the Asheville, N.C area in which he related his experiences with treatment problems and misinformation. So based on that advance preparatory knowledge, my response to the Lyme diagnosis news was that I’d prefer not to treat with antibiotics unless all else failed. She agreed and said, “I am not a Lyme expert. There is one doctor in the area who is and here’s his name.”

My decision was to put that contact on reserve and to proceed with her treatment recommendations and to include my old stand-bys for all infections including the nano-particle MesoSilver and other antimicrobials. (Thanks again to Erling for his in-depth research on the “silver” topic.) She agreed and provided a list of specific supplements to boost immune system function while killing the Lyme with Meso and eventually to add Lyme-specific herbals.

My intention is not to offer a diary, blow-by-blow account of my Lyme treatment saga but to alert you to the fact that the incidence of Lyme is highly prevalent in the US. Because it mimics other ailments, it is not always recognized, tested for or even properly treated.

This is not meant to be alarming, but it is extremely important to be aware just in case there is a history of chasing a lot of recurrent symptoms that never quite completely go away…. including arrhythmia.

As an alert, it’s critical to know that
• Lyme and the treatment of Lyme can cause horrendous Afib reactions

• The Lyme bacterium can infect all parts of the heart, including the conduction
system around the atrioventricular node, the outer or inner membranes of the heart, the cardiac muscle, and more rarely, cardiac blood vessels or heart valves. Tissue damage results primarily from inflammation that occurs as the host immune cells respond to bacteria that enter the tissue.

•Lyme misinformation abounds and often comes directly from what would appear to be authoritative sources and weblinks. There is an attempt to obscure or down-play the seriousness or prevalence of Lyme.

• Lyme and Lyme co-infections (i.e., Bartonella, Babesia, Erlichia) which manifest similarly and are often not identified by proper testing so as a result, various other ailments are treated instead. Patients don’t improve until the Lyme or Co-infections are identified and treated. The Elisa test is commonly used and is not accurate.

• Lyme infection or exposure can have occurred years prior and was treated as something else or just went into remission and became chronic. The collective opinions of my various doctors is that this was the case for me as I had treated 20 years ago for CFS/FM and MCS …it took 10 years of treatment to reverse those symptoms and I’ve been fine for the last 10 (or so I thought).

• Opinions are that most likely everyone harbors Lyme given the prevalence of exposure opportunities, but it may not become active until one’s immune system function is less than optimal. My immune system seemed to be good as I haven’t had a cold or flu for 13 years. More support for the chronic, rather than active status.

• For every book or article out there on LD and treatment, there are 10 plus opposing or contradictory opinions. It’s a quagmire. Intentional obfuscation seems prevalent. I learned who are the reliable, top experts and came up with my own plan based on their experiences. There does not seem to be a one-size-fits-all protocol that is totally effective. Many treatments have severe adverse effects. This is the ultimate, “Experiment-of-One” scenario.

• Locally, I found that other than my FM MD, most doctors are not conversant with LD or LD treatment and it’s readily apparent, their opinions are just that—opinions and not based on sound research facts (or tests) but rather taking the word of some report without investigation or adequate validation. A frequent comment by doctors is …”It doesn’t sound as if you have Lyme… or I don’t think you’d have it”… when there can be no possible support for those statements without proper testing…emphasis on “proper.” Fortunately, I have extensive experience advocating for my own healthcare options and this is no exception. Lyme victims must do extensive research and become their own advocates for treatment and care.

• A list of symptoms follows at the conclusion and serves to offer an idea of how easy it would be to treat for something else when testing for LD is not given consideration from the onset… and it’s easy to understand why that might be so.

• The mention of biofilms toward the end of the documentary is significantly important since various pathogens protect themselves by producing protective biofilms or protein coatings. Lyme does this. There are now effective treatments for biofilms that are offering great progress not only for LD but other applications as well such as SIBO.

• Interesting find: Lyme borellia crave manganese.

Lyme & Arrhythmia
While it’s mentioned that Lyme patients often experience arrhythmia, it’s not entirely clear whether it’s the Lyme doing damage to the heart or the treatment of Lyme that causes the arrhythmia. Quite likely, both. Pathogens give off metabolic byproducts which our body perceives as toxic threats and then mount aggressive responses which manifest as various symptoms. I have pondered frequently if a Lyme reaction or response was actually the initial cause of my AF onset and there is no way to know that answer. It’s quite possible; perhaps highly probable. I know positively that my recent treatment for Lyme manifested in a horrendous sequence of recurrent AF and prior to to all that Afib was a thing of the past. I muse that since Lyme has extensive neurological adverse effects, it probably depends on the individual as to how that manifests and when. One person could develop a symptom of Bell’s palsy; another, Afib or branch bundle block and so on.

For afibbers who are unable to slow down or reverse Afib’s progressive trend by treating with drugs, supplements or even ablation, and based on my own experiential observations, it would seem reasonable and logical to find a Lyme Literate MD and have the specific targeted testing to rule out Lyme and Co-infections. However, don’t think your local GP or Internist will be aware of this or be cooperative. Rumors about Lyme treatment are abundant. Tests are not always covered by insurance and can be expensive. The cost of not testing, though, is much more than dollars out of pocket.

Very briefly, my Lyme Treatment chronicle is this: The first six weeks of treatment went as expected. The Herxheimer response or die-off as predicted gave severe fatigue. I was ‘down’ a good deal of the time but heart was calm. When Phase 2 killing with specific herbals began, I experienced 9 AF events in 16 days; some converted with PIP quickly, others reverted to flutter and did not resolve quickly. I stopped Phase 2 but the insult persisted and I was electro-cardioverted and placed on heart meds by mid-October. The meds kept me in NSR but I gave me the other typical adverse effects that drugs do to me. While I recovered and adjusted, I stopped one Lyme regimen and began another less aggressive. After 3 months, I weaned off the heart meds all the while emphasizing the principles of The Strategy with high focus on maintaining alkaline pH and cellular energy/voltage needed to support NSR.

So this makes three times I’ve successfully managed to reverse the Afib trend. Although occasional breakthroughs continue as unwelcome surprises, I feel I’m making remarkable progress. The three EPs I consulted felt initially that since my ablation was 2003 vintage, I probably was due for another. My thought is if an old Lyme exposure caused problems in the heart’s electrical system, it is not yet clear to me that ablation would be an automatic fix. Time will tell.

Stay tuned for updates

NSR to everyone and Be Well.

Jackie



The following serve to show the complicated nature of Lyme and related Co-infections

First example: I know of a local woman who received a tick bite on vacation at the Outer Banks, NC. They camped on the beach where herds of deer also camp. Her husband removed the tick.

She has been tested numerous times here at Cleveland Clinic with negative results. They say she doesn’t have Lyme, yet she has many of the Lyme symptoms including the cyclical fatigue. And she did have the exposure. Her misery continues after 6 years and is becoming (predictably) worse. I surmise their testing is incomplete.

Second: To help explain why this is such a complicated illness… notes this:

The bacterium in the spirochete class responsible for Lyme disease is identified as Borrelia burgdorferi.

B. burgdorferi is a fascinating bacterium [9, 10]. It has <1500 gene sequences with at least 132 functioning genes. In contrast, Treponema pallidum, the spirochetal agent of syphilis, has only 22 functioning genes. The genetic makeup of B. burgdorferi is quite unusual. It has a linear chromosome and 21 plasmids, which are extrachromosomal strands of DNA. This is 3 times more plasmids than any other known bacteria (Chlamydia comes in a distant second, with 7 plasmids). Plasmids are thought to give bacteria a kind of “rapid response” system that allows them to adapt very rapidly to changes in the environment, and the complex genetic structure of B. burgdorferi suggests that this is a highly adaptable organism [9, 10].
In addition to its complex genetic makeup, B. burgdorferi engages in so-called “stealth pathology” to evade the human immune response . [cid.oxfordjournals.org]


If you do online research, one of the most highly-respected Lyme crusader, researcher and speaker is Joseph J. Burrascano, Jr. MD…who is in the documentary video multiple times and who retired to do research and bring the true Lyme story to light. You can trust what he says.

Founding Member of ILADS … International Lyme Association Disease Society. [www.youtube.com]

[www.publichealthalert.org]

Under Our Skin documentary
[topdocumentaryfilms.com]

Sample list of symptoms for LD and three common co-infections*

Borrelia (Borreliosis, neuroborreliosis; also known as Lyme Disease)
Bladder dysfunction
Burning or stabbing sensations
Cardiac impairment
Change in bowel function
Chest pain
Confusion
Depression
Difficulty thinking
Difficulty with concentration and reading
Difficulty with speech, writing
Difficulty finding words; name blocking
Disorientation: getting lost, going to wrong places
Disturbed sleep: too much, too little, fractionated, early awakening
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
Exaggerated symptoms or worse hangover from alcohol
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Facial paralysis (Bell's palsy)
Fatigue, tiredness, poor stamina
Forgetfulness
Headache
Heart block
Heart murmur
Heart palpitations
Heart valve prolapse
Increased motion sickness
Irritability
Irritable bladder
Joint pain or swelling
Lightheadedness
Mood swings
Muscle pain or cramps
Neck creaks & cracks
Neck stiffness, pain
Numbness
Pelvic pain
Poor attention
Poor balance
Poor short-term memory
Problem absorbing new information
Pulse skips
Rib soreness
Sexual dysfunction or loss of libido
Shooting pains
Shortness of breath; cough
Skin hypersensitivity
Sore throat
Stiffness of the joints or back
Swollen glands
Testicular pain
Tingling
Tremor
Twitching of the face or other muscles
Unavoidable need to sit or lay down
Unexplained breast pain
Unexplained fevers, sweats, chills or flushing
Unexplained hair loss
Unexplained menstrual irregularity'
Unexplained milk production
Unexplained weight loss or gain
Upset Stomach or abdominal pain
Vertigo
Wooziness

Babesia (Babesiosis)
Air hunger
Cough
Fatigue
Fevers
Headache
Hemolysis
Imbalance without true vertigo
Mild encephalopathy
Shaking chills
Sweats

Bartonella
abnormal liver enzymes
encephalopathy
endocarditis
flu-like malaise
headache
hemolysis with anemia
hepatomegaly
high fever
immune deficiency
jaundice
lymphadenopathy
myalgias
myocarditis
papular or angiomatous rash
somnolence
sore throat
splenomegaly
weakened immune response

Ehrlichia (Ehrlichiosis)
elevated liver enzymes
headaches
myalgias
ongoing fatigue
persistent leukopenia
thrombocytopenia
*Source: Diagnostic Hints And Treatment Guidelines For Lyme And Other Tick Borne Illnesses, by Joseph J. Burrascano Jr., M.D. (Fifteenth Edition 2008).


Lyme-Specific Specialty Labs
The ELISA is nearly worthless and the standard Western Blot is missing several key markers…yet both are considered standard Lyme tests, but miss a great number of diagnoses because of the incompleteness.
From what I’ve heard thus far, the following four are all are excellent. Some have a preference for the IGeneX, although each website looks as if they offer very complete and specific testing.…read a little bit to learn and verify that the standard tests are not as reliable as everyone thinks.

IGeneX
[igenex.com] -

Fry Labs
[www.frylabs.com]

Immunoscience Labs
[www.immunoscienceslab.com]

Spirostat Technologies
[www.spirostat.com]

effective treatments for biofilms Google search brought up a lot of stuff info to look into.

[fficial&client=firefox-a" rel="nofollow">www.google.com]

Thank you, Jackie, for this lengthy and informative and invaluable post. I'm sorry that you have been going through increased breakthroughs of Afib as the result of your encounter with Lyme, but I am very grateful for all your shared research into this serious health condition. Lyme is rampant, as are other very scary tick-borne illnesses.

Louise

On the Biofilm topic:

A highly respected scientist in biofilm research and Chief Science Officer for ProThera and Klaire Labs, Stephen Olmstead, MD, has written a collaborative report with two other biofilm researchers titled Life on the Edge: The clinical Implications of Gastrointestinal Biofilm (2009). A summary version of the seven page report is available here [www.thefreelibrary.com] There are 88 scientific references included in the original paper.

Biofilms aren’t just associated with Lyme. Important to know how they can facilitate a pathogenic microbial complication.


Jackie

Jackie,
Sorry to hear of your latest trials and tribulations, but many thanks for keeping us all in the picture in your usual rigorous and thorough manner.
Kind regards,
Mike F.

Thanks Mike - I'm actually doing quite well compared to earlier. Time will tell but at least my heart remains calm and that's amazing considering the turbulence during the treatment phase and it's a definite comfort to be able to become stabilized once again without the heart drugs.

Jackie