Understanding Chronic Lyme Disease

It’s obvious from talking to a few people that hardly anyone understands what having chronic Lyme disease means.  This is not surprising as I barely knew myself until a few months ago — but I have educated myself through a lot of research and speaking to my specialist doctor.

I’m going to try to attempt to describe what this is all about and what I am going through, in the hope of spreading understanding.  Make no mistake, I am not looking for sympathy, just for people to understand.

What it is

Lyme is an evil and clever bacteria called Borrelia.  It uses resist and evasion tactics that any SWAT team would be proud of by hiding in muscles, bone, cartilage and crosses the blood-brain-barrier to hide deep in brain tissue.  It also changes form when under attack and builds itself a wall to resist antibiotics.

This is NOT a 30 day antibiotic course disease, it takes months and often years to eradicate.

What it does

Lyme is often called The Great Imitator.  It has so many symptoms that unless they are taken as a whole it’s incredibly easy to misdiagnose.  And sadly that is what is happening across the world.  I recently heard that 80% of patients diagnosed with M.E. who had a test for Lyme were positive for it.

Here’s a selection of my particular symptoms, but this is by no means exhaustive:

  • Extreme fatigue, with aching muscles and no energy
  • Bone and joint pain with stiffness, often misdiagnosed as arthritis
  • Many, many neurological symptoms: forgetfulness (I sometimes fail to recall the name of someone I’ve known most of my life), poor concentration levels, massive headaches, nausea, faintness, anxiety, depression, impulsiveness, mood swings
  • Insomnia
  • Tinnitus
  • Muscle twitching
  • Blurry vision and “floaters”
  • Pink eye

What is a co-infection

Almost everyone who has Lyme also has a co-infection. This is additional bacteria that are contracted in the same tick bite that delivers the Lyme.  I have something called Bartonella which is responsible for some very nasty symptoms, one of which is life-threatening:

  • Burning in feet and foot pain (often misdiagnosed as plantar fasciitis)
  • Swollen, painful lymph nodes
  • Skin rashes
  • Heart problems, pericarditis

The last of these is one of my biggest problems and the reason I am not travelling for work right now.  Pericarditis is a swelling of the pericardium, the sac around the heart. It also traps fluid which is known as a pericardial effusion.  This is a serious issue – if the fluid becomes too much it prevents the heart from beating efficiently and eventually makes it stop.

This condition is responsible for missed beats, palpitations and extreme pain.  When I say extreme, I’m talking nothing like I have experienced before.  The pain and palpitations will come and go at random and when it kicks off I feel the blood draining from my head and I have to lie still for anything from 15 minutes to 4 hours or more, before it goes away.

What is the treatment

There are many strains of the bacteria and treatment is somewhat of an art as much as it is a science.  As I previously mentioned, the Borellia will shift form.  Its main form is a spirochete but it also takes a non-cell wall form (cell walls are what antibiotics work on) and a dormant cyst form.  All of these forms have to be taken care of to ensure it doesn’t come back.

The treatment I am on is a variety of anti-malarial, antibiotic and herbal supplements.

The treatment is worse than the disease

That’s right – the treatment makes everything worse.  Much worse.  As the bacteria die off, they dump endotoxins into your blood stream which triggers many things:

  • Exacerbation of existing symptoms
  • Flu-like symptoms with huge headaches
  • Pain, pain and more pain

This is called a herxheimer reaction, or herx for short.

I have to cope with this by constant detoxing.  I take a few different detoxing supplements and have to drink in the region of 4 litres of water a day to flush my system out.  I have learned that when I am experiencing a herx, I become a zombie and cannot function at all.

In addition, I am completely intolerant to alcohol, I will get an awful headache within 5 minutes of a drink.  Life and soul of the party, me!

Outlook

I am hopeful that I will resolve everything eventually but I know it will take me personally another year or two before I am better.  In the meantime, I feel like something is stealing my life away from me, but I have to remain strong.  I have a family to take care of.

10 thoughts on “Understanding Chronic Lyme Disease

  1. Thanks for posting information, it’s a great help. I was diagnosed on Thursday with Lyme and now await co infection results from the US before my treatment starts. From what you, my Lyme doctor and others online say about the side effects of treatment I have a very challenging time ahead. How are you coping? I think we all have to try to stay positive and concentrate on the end game, life without this disease! I was diagnosed in May 2012 with Chronic Pleura Pericardits with Tamponade, as you know life threatening. How is you Pericarditis going with the Lyme treatment? I still have an attack about every six weeks and concerned how I’m going to cope with both. I’m so pleased to be able to talk with someone who understands how I feel and will feel when my treatment starts.
    Take care, stay strong
    Deborah

    • Hi,
      I don’t have much progress with the pericarditis yet but I’m just starting some new antibiotics so I remain hopeful! I get regular attacks over a period of weeks and then maybe a week or two off before it starts again. If you want to talk more feel free to email me bigjools @ gmail.com and we can swap notes!

      • Am familiar with Lyme Disease. I have had friends who have had it. Not a good thing to get and there are serious complications like your pericarditis (very serious). I do hope the new antiobiotics helps you and even recover.

  2. The pericarditis is awful!! I understand. I can’t believe I’m having it now and it keeps coming back. I was just at a new cardiologist today and started surfing for the Lyme-pericarditis connection, I think I need to go back on antibiotics again. Hang in there!!!

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