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Consequences of Long Term Lyme Disease Infection

Updated on May 14, 2016
Source
Wheelchair bound Lyme patient rallies outside of Infectious Disease conference asking for revised treatment guidelines.  San Francisco, 2013.
Wheelchair bound Lyme patient rallies outside of Infectious Disease conference asking for revised treatment guidelines. San Francisco, 2013. | Source

300,000+ New Cases Per Year

In 2013, the CDC confirmed that their previous estimate of 30,000 new Lyme Disease cases per year in the U.S. was a drastic underestimate. They now estimate that 300,000 or more people contract Lyme each year in the U.S. alone.

Lyme Disease in it's acute phase can be relatively 'easy' to treat with antibiotics (meaning that if caught early, there is a much greater chance of responding to initial antibiotic treatment).

This has led to an oversimplified reputation and a dangerously oversimplified and skewed response from the medical and infectious disease communities.

Even prompt treatment is not always effective, but in many cases, fast diagnosis and treatment lead to a full recovery and the ability to return to the life the patient knew before. Strengthening the need to reevaluate testing and diagnosis protocols that are leaving unacceptable numbers of patients sick.

Delayed or Ineffective Treatment

For those that go undiagnosed, misdiagnosed, or poorly treated, and for those that do not respond to the typical short does of antibiotics, life may never be the same again.

It is very important to understand that most people are not diagnosed right away and are often treated for something else--or not at all--for several years.

CDC Website Information

Many statements on the CDC website do not address the majority of people who contract Lyme Disease, due to the increasingly typical delay in diagnosis and treatment. When the CDC does (rarely) speak to the persistence of Lyme, they are usually referring to the people who were diagnosed and treated right away.

It is therefore up to the general public, doctors, and Lyme patients to know this and to re-interpret the rest of what they read accordingly.

Persistent Lyme Controversy

When the topic of persistent Lyme Disease is addressed, there are statements like "usually" or "almost always" that are not backed up with data or even statistics, making these terms open to wide interpretation.

These are also extremely controversial statements not supported by scientific literature. In fact, they are very pointedly contradicted by several decades worth of the best available science.

I am not suggesting that one never trust the government (as a federal employee, one could accurately state that I am the government). I am also not suggesting that all of the CDC's Lyme Disease information is false. There have been numerous changes in language lately, making statements truer and/or closer to true. But still misleading.

Why This Is Important

I believed what I read early on in my illness and it kept me sicker longer, increasing my long terms risks.

The types and likelihoods of long term complications are far more complicated than what is indicated on the CDC website.

Thus the need for countless articles and blogs and protests and outreach efforts until the public understands that they and their families are at very high risk for a very big change in their lives as they've lived them so far. Because the odds of catching Lyme Disease are increasing rapidly and the odds of going un-diagnosed or misdiagnosed if that occurs are astronomically greater than getting quickly and accurately diagnosed and treated.

I was lucky to be regaining some movement by day 11 of Bell's palsy (you can see a bit of a dimple on the paralyzed side and a slight rise to my mouth).
I was lucky to be regaining some movement by day 11 of Bell's palsy (you can see a bit of a dimple on the paralyzed side and a slight rise to my mouth). | Source

Fast Facts From Lymedisease.org

  • Lyme is fastest growing vector-borne disease
  • 85% do not recall tick bite
  • Less than 70% of people develop a rash
  • Treatment should begin without testing if rash is present
  • Lab tests may be negative in the first 4-6 weeks

This is me after Bell's palsy.  Some people never regain movement of the paralyzed side or can take many years to do so.
This is me after Bell's palsy. Some people never regain movement of the paralyzed side or can take many years to do so. | Source

Even Short Term Infection Carries Long Term Risk

Even though treatment in the acute phase has a much higher chance of success, major symptoms can be experienced early in the disease and these can be permanent.

Early treatment is not always able to reverse damage experienced in the acute phase, even when successful at removing the infection. And early treatment is not successful for all patients. This is partly due to a lack of awareness of the need to treat co-infections (additional tick born infections that can come from the same tick and jeopardize recovery if not simultaneously treated). Additionally, treatment duration is limited by outdated guidelines (discussed in greater detail in an earlier hub) that leave many patients with active infections and symptoms.

It is an extremely painful and dangerous disease that can lead to paralysis and major physical impediments, even early on, and even with fast (effective or ineffective) treatment.

Bell's Palsy &

A common example is Bell's palsy, in which one side of a patient's face is paralyzed. The paralysis alone is extremely scary, but the constriction of the cranial nerve that causes it also leads to excruciating pain and a very challenging recovery.

Not all patients regain all of their facial function and many of those that do retain residual impacts in facial, neck, and jaw muscles and related to hearing and sight or in sensory sensitivities.

Paralysis

Some patients are diagnosed with Lyme disease following loss of function in portions of their bodies, or lose functions during acute phase. The disease often becomes known after these symptoms have become severe. Some Lyme patients remain wheelchair, bed, or house bound for months, years, or indefinitely.

Neurological and Other Consequences

Even with fast treatment (during acute symptoms), long term or permanent symptoms can include arthritis, food intolerances, paralysis, fatigue issues, cognitive challenges, and brain lesions, to name only a few from a very long list of possibilities.

It is a matter of debate, as discussed earlier, whether on-going symtpoms after treatment are due to on-going infection, or due to what the CDC calls Post Treatment Lyme Disorder (PTLD). Persistent infection has been demonstrated by at least 27 peer reviewed studies, whereas PTLD has not been explained by the CDC in terms of a causal mechanism or peer reviewed studies or evidence.

Where these symptoms are debilitating and/or simultaneously remaining and are part of ongoing illness, they are likely due to continued infection, and therefore considered for the sake of this article to belong to the categories of discussion below.

Lyme Persistence

Were You Aware that Lyme Disease Can Persist Beyond Initial Treatment?

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Long Term Physical Risks and Consequences of Persistent Lyme Disease

The longer the disease goes untreated, the greater the risk of long term impairment and the greater the risk of permanent damage to the patients body.

Physical Risks from Delayed Treatment

Lyme disease is the result of infection from Borrelia burgdorferi through the bite of an infected tick. Borrelia spirochetes are spiral shaped and can bore into tissues and organs and can infect all parts of the body, leading to all types of symptoms in all major body processes.

This is partly why Lyme is mistaken for so many other illnesses (since so man parts of the body are affected in so many ways), but also why patients experience painful and debilitating physical and mental symptoms, including paralysis or death, particularly when Lyme disease goes undiagnosed.

Physical Consequences of Lyme Disease

Body Part or System
Damage/Consequence
Central Nervous System (Brain/Spinal Column)
Paralysis, Cognitive Issues, Circulatory Issues, High or Low Blood Pressure, lymphocytic meningitis, cranial neuritis, radiculoneuritis, mononeuropathy multiplex, Encephalopathy
Peripheral Nervous System
Broad variety of peripheral nerve disorders
Occular Tissues/Nerves
Inflammation and Scarring, Floaters, Blurry Vision, Eye Twitching, Dryness, Loss of Vision
Source

Personal Costs of Long Term Lyme Disease

Again, this leads to a very long list for which each item could be it's own volume or series. In short, lyme ruins lives, livelihoods, relationships, childhoods, families, and self worth, as seen from just a few examples.

Parenting and "Lyme Rage"

Kids lose their parents to this illness when it is fatal, but they also lose the parent and the lifestyle they knew before because the parent no longer leads the same life. In many cases their energy levels and reduced physical capabilities greatly limit their former lifestyle.

In addition, however, mood swings paired with cognitive issues lead to greatly, tragically altered parent-child relationships in a large number of Lyme afflicted families. The emotional symptoms also increase the chances of misdiagnosis in the first place by leading doctors to wrongly attribute symptoms to psychological or emotional causes.

Productivity and Self Worth

It often takes longer term Lyme sufferers many years to return to fully productive lives, if they are ever fully able to. Most are forced to change or restart their careers.

Controversies described later also make disability and insurance coverage challenging, making it even harder to achieve the type of accommodations and treatments that would allow patients to retain or regain productive employment, which many patients long for as much as the active and pain free lives they previously experienced.

Coping and Loss

Very few long term Lyme Disease patients maintain the same quality of life, same relationships, or same careers or positions they enjoyed before Lyme Disease. It is very difficult to accept a reduced state of living indefinitely. Insult is added to injury by the onslaught of negative (and often false) information brazenly spread by doctors. Thousands of patients are told they aren't sick, even after finally being diagnosed (even after testing positive through lab tests, even interpreted using more conservative interpretation standards) after years of misdiagnosis.

Lyme Disease is unique in that many doctors state to patients that they don't "believe in" Lyme Disease.

The existence of the disease is not in any way disputed or questionable by medical or scientific standards, yet doctors repeatedly make these statements verbally and in print (this was even stated by doctors at the Philadelphia IDSA IDWeek Lyme Disease protest and vigil in October 2014). This is very hard to put up with when patients have been robbed of most of the daily joys of living. It is also not appropriate for medial professionals who don't "believe in" an illness (or any aspect of an illness) to take part in guidelines for or implementation of patient care.

The optimism required to recover can also impede a patient's ability to accept a new and reduced lifestyle in the long term. There is no answer for this double edged sword. It is yet another tragic aspect of this horrible disease.

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    • RockyMountainMom profile image
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      RockyMountainMom 2 years ago from Montana

      Thank you donotfear!

    • donotfear profile image

      donotfear 2 years ago from The Boondocks

      Very well done!

    • RockyMountainMom profile image
      Author

      RockyMountainMom 2 years ago from Montana

      I'm definitely better since getting diagnosed and starting treatment, thank you! Much less pain and have had a reduction in many of the worst physical symptoms. Still a long road after relapsing last spring. I have some new pieces of the puzzle to work on, which gives me hope. I try my best to focus less on how different life would be if I'd been treated early, but that is what I want for others. I try to focus as much as I can on how lucky I am to have access to care, even if it's out of state. Because, as you say, so many don't even know. Still a long road ahead, but I am hopeful and still lucky in many ways.....I agree, it is about time.

    • lions44 profile image

      CJ Kelly 2 years ago from Auburn, WA

      I grew up on the east coast (NYC) and saw the effects of this disease close up. Uncles, cousins and neighbors. I got so paranoid about it that I stopped playing golf, hiking, etc. It's epidemic and no one notices half the time. My cousin suffered brain damage because of it and was never the same. I hope you are doing better. And it's about time better treatments were available.