Symptoms Of Late-Stage Lyme Disease

Symptoms of Lyme, late-stage Lyme disease, and Lyme Co-Infections.  What is Lyme Disease? And my own story of undiagnosed Late-Stage Lyme Disease, suffering from Lyme for over 35 years.

What is Lyme Disease?

Lyme disease is a multisystem bacterial infection that can be spread to animals and humans by bites from infected ticks. 

In the USA Lyme disease is a manifestation of the bacterial spirochete Borrelia burgdorferi. Asia and Europe, Lyme disease is mostly from Borrelia burgdorferi, Borrelia afzelii, and Borrelia garinii.

Lyme Disease Co-Infections?

Those infected with Lyme disease are also usually infected by a variety of co-infections; different co-infections are more common in certain countries and parts of the world than others.

In the USA these include “Lyme borreliosis, anaplasmosis, babesiosis, Powassan virus, and B. miyamotoi infection”

In Europe, these include Babesia, Bartonella, Brucella, Q Fever, and Tick-borne Encephalitis. These co-infections can cause a wide range of devastating impacts on the immune and central nervous system when not treated early enough.

What is Stage 1 Of Lyme Disease?

Stage 1 of Lyme Disease is the transmission of the tick bite. This is where one normally would find a tick and then a bull’s eye rash. Although it is reputed that many people do not see the tick and may never get or see the rash. At this stage it is important to remove the tick. Note not all ticks are infected.

What is Stage 2 Of Lyme Disease?

Stage 2 of Lyme Disease is when the patient begins to feel sick or unwell this tends to occur within weeks or months, and the person experiences flu-type symptoms;   chills, fatigue, pain, weakness, rashes, heart problems, facial paralysis, eye problems.

What is Late-Stage Lyme Disease?

Late-stage Lyme disease is unhealed or untreated Lyme disease (late-stage disseminated lyme) it is known as the great imitator as it mimics so many other diseases. Its impact on the central nervous system makes some of the symptoms resemble conditions like A.LS., brain tumours, Guillaine-Barr, M.S., and Parkinson’s Disease.

Late-stage Lyme disease symptoms include

Arthritic Lyme

Balance Issues

Bladder Dysfunction

Brain Fog

Chronic Fatigue and Severe Fatigue

Disorientation

Eye Complications and Vision Changes

Exhaustion and Fatigue,

Gut Issues

Hormonal Issues

Hyperacusis and Noise Sensitivity Challenges

Immune system disorders

Insomnia and other sleep disorders

Lyme Carditis, Heart Murmur, Heart Inflammation, Palpations, Tachycardia

Lymphocytic Meningitis,

Palsies of The Cranial Nerves,

Pelvic Pain,

Muscle Weakness,

Myocarditis, Pericarditis,

Paralysis,

Nervous system issues,

Nerve damage,

Numbness,

Seizures,

Sensitivity To Light

Shortness Of Breath

Swollen Glands

Tingling,

Tremors

Untreated Late-Stage Lyme Disease

Untreated late-stage Lyme disease is when someone does not receive treatment within a specific time or does not fully recover from the standard treatment of antibiotics, such as doxycycline or amoxicillin.

Treating late-stage Lyme is often a longer treatment of intravenous antibiotics.

Recovery is said to depend on the amounts years, the co-infections, and the level of late-stage complications. Sadly some untreated symptoms can be life-threatening.

My Own Story Around Untreated Late-Stage Lyme Disease

At the age of 14, I was bitten by something what appeared to be very similar to a bulls-eye rash. I had a lot of swelling in my legs, feet, and ankles which meant I couldn’t wear my shoes and go to school. My GP identified it as some sort of strange insect bite but didn’t know what.

Over the next few years, I would begin suffering from a lot of odd unexplained low-level health challenges, including a lot of bladder and kidney infections, light sensitivity and just a general feeling of being unwell.

I had keratitis and some eye issues, plus a few other rare eye phenomena supposedly related to a rare medical challenge known as parry rombergs disease that I was diagnosed as a child, which appeared to be congenital.

At the age of 19, after being an unfortunate victim of mercury toxicity, where a dentist accidentally put mercury up my root canal instead of my tooth.

My health quickly and seriously declined, initially appearing as a very seriously debilitating flu and a whole host of other rare medical symptoms.

Suspected Late-Stage Lyme Symptom

Over the next 30 years, I would experience bouts of extreme exhaustion, brain fog, muscle weakness, and tremors, suffer chills, fevers, strange rashes, constant sore throats, throat infections, and so many stomach issues and what appeared to be like menopausal flashes (even though I was only 21 years of age) .

Aswell as all sorts of weird eye and neurological issues.

I went from a young fit active 19-year-old who walked several miles a day, had 2 jobs, loved to dance and sing, with many hobbies. Too within a few days hardly was able to lift my head.

Even though I recovered a bit from this initial episode, I struggled to get any stamina back, I would have constant relapses and a low immune system, prone to all sorts of virus, bacteria, and digestive issues.

At 21 I was diagnosed with M.E. and at 22 I got so ill, that I had no choice but to give up college and return home to be looked after by my parents and siblings.

In my late twenties, I was hospitalised after what appeared to be very large welts all over my body and joints, rheumatic fever, and what I was told was rheumatoid arthritis. Even though the symptoms seem to disappear.

One of the doctors at the time suspected I had Lyme Disease because of the amount of unusual symptoms I had that were not associated with M.E. or rheumatic fever, but for some reason, it was never mentioned again until my 40’s.

Eye Complications Of Late-Stage Lyme Disease

I became very much a medical mystery, especially to eye specialists all over the UK who would come to examine me eye in research and clinical studies. My specific case was included in a medical research publication.

A long list of eye complications including dangerously low eye pressure, a hypotonic eye, choroidal folds, retina detachment issues, optic nerve damage, light sensitivity, dilated pupil, keratitis alongside a hole in my eye.

Now although I thought the hole in my eye, seemed to be directly related to the mercury injury I suffered. As it was in line with the very nerve that went down that tooth.

I would later find out that many of the other eye conditions and rare eye symptoms  I had not usually seen in someone so young were seen in certain co-infections of Lyme, especially untreated late-stage Lyme disease.

Over 30 years I had so many strange symptoms and other chronic health conditions that didn’t add up, a massive amount of abscesses in the bone cavity above my mouth, cysts, and a benign tumour.

A fatty liver when I hadn’t drunk alcohol since my early twenties, when I didn’t eat meat, rarely ate fatty foods being mostly vegeterian and lactose intolerant.

I developed sorts of weird and wonderful allergies, and sensitivities to all sorts of things from perfumes, household toxins, foods, and alcohol intolerance, and became very unwell if I consumed processed sugar...

In my 40’s began to develop jerking movements, extreme hyperacusis in one ear,  a complex movement disorder; myoclonus dystonia, chorea, and so many other symptoms that would be too long to mention.

Doctors and Medical Experts were baffled with my weird and wonderful symptoms and chronic health conditions until in my late 40s while I was on holiday with a friend in the medical profession. Did he seriously begin to question some of the symptoms I had?

He questioned if it could be Lyme Disease. After taking a quiz I was shocked to discover that out of 350 symptoms related to Lyme disease. There were less than a handful of the symptoms I hadn’t suffered from, since I had those bites.

Challenges Around NHS Lyme Testing And Treatment

I would discover that according to worldwide Lyme Experts the NHS Lyme test was not fit for purpose and most likely would not be able to detect Late-Stage Lyme Disease.

I was advised by a variety of health professionals to get tested abroad, which did suggest I had late-stage Lyme and quite a few of the co-infections which very much aligned with many of the symptoms I had been suffering from for years.

Especially the very rare and unusual neurological and eye symptoms and a persistent unexplained cough I had since my teens.

Sadly even though some of the Doctors I saw agreed that it appeared to be highly likely it was Late-Stage Lyme Disease.

Unfortunately due to UK guidelines I was not allowed to be treated by late-stage treatment of intravenous antibiotics and was given no help or hope.

Now at the time, the testing I chose to get was the Elis-spot and the PCR. Interestingly, when I submitted my results to an infectious disease doctor in the NHS I was mocked at the time because I went for a PCR test.

And was told at the time a PCR  test would never be used to diagnose any virus or disease in the UK because of its level of inaccuracy. Hmm, extremely interesting when we look at what was used to test a certain virus over the last few years.

Now because of this, I looked into PCR testing at the time, and let’s say what I learned was interesting.

What I Learned Living With Untreated Chronic Health Challenges

On one level I was very disappointed I was not allowed to be given the recommended intravenous antibiotic for late-stage Lyme here in the UK. Even though my GP and a couple of specialists felt it was too late to make any difference.

I was told by neurologists and GPs that I had just to live and accept my symptoms and life situation, by this stage I had become housebound due to the severity of sound sensitivity that was triggering non-epileptic seizures .

Like most of the health challenges I had, I was rarely given any support or help.

Out of this situation I learned young how easy it is to take our health for granted. How quickly and how easily our health can be taken away.

But also how important it is to take as much self-responsibility for our health and well-being as we can. Most people today put their health and well-being at the lower end of their priorities.

Living with any chronic, life-changing, or life-limiting health condition is extremely challenging. But it can also teach us great gifts, and help us value life itself on a level that so many other people cannot.

I spent a large part of my life being gaslighted and judged, by so many medical professionals, healers, and therapists that on some level I became tainted by what was supposed to be healthcare and well-being support.

But I thank god, that I aligned with a holistic approach to life and my health early on. I honestly believe if I hadn’t taken a more natural approach, and started to live a more clean healthy life, I wouldn’t be here today.