Symptoms Of Late-Stage Lyme Disease

Symptoms of Late Stage Lyme Disease

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 burgdorferiBorrelia 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

Infographic Lyme Disease - Symptoms Of Late-Stage Lyme Disease

 

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 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.

Stress Resilience Course For Chronic Health Conditions

 

 

Clary Sage Oil – Female Balancing Essential Oil

Pure Essential Clary Sage Oil

Clary Sage Oil – Female Balancing Essential Oil

The Therapeutic benefits of clary sage essential oil, why it is known as a gift for female health and well-being by holistic and modern medicine.

What is Clary Sage? And why is clary sage widely regarded as a hormone-balancing essential oil for many female hormone-related issues? To help reduce anxiety and stress, a supportive muscle relaxant and antidepressant.

 

What is Clary Sage? (Salvia sclarea)

 

Clary sage also known as salvia scalrea is a purplish blue flower/plant that is cultivated worldwide although it is native to Southern Europe. Its extensive therapeutic properties make it regarded as a high-value essential oil which is used in cosmetics, perfume and for medicinal use.

Each species of clary sage grown in different countries demonstrates different biological activity and chemical composition as documented by Researchgate.net

History Of Clary Sage

Clary sage  also known as ‘clear eye’ and ‘Oculus Christi’ (Eye of Christ) has been used since the middles ages for its medicinal properties. The flowers of clary sage were added to salads and are still used as a herbal tea. It is widely used in herbalism, ayurveda, allopathic medicine, cosmetics and perfumes.

 

Clary Sage Infographic Essential Oils

Therapeutic Properties Of Clary Sage Oil

 

Clary sage is a well-known antispasmodic, anticonvulsive, antidepressant, anti-inflammatory that has antifungal and antiseptic, and anti-infectious properties.

Clary sage oil helps alleviate insomnia, lowers cortisol levels, encourages deeper quality sleep, and acts as a natural sedative and nerve tonic.

A great antispasmodic and muscle relaxation it is widely used to treat muscular cramps, muscle tension, and muscle painand increase circulation.

As an essential oil Clary Sage helps regulate the endocrine system as it is potent in natural “phytoestrogens”  that mimic the effects of oestrogen in the human body and are reputed to slow down osteoporosis.

It helps alleviate menstrual cramps, it is widely used to reduce PMT premenstrual tension and PMS premenstrual symptoms.

 

Insomnia

It is widely used by clinical aromatherapists to help boost mood, reduce anxiety and stress levels. It is reputed to be a natural antidepressant.

 

 

 

 

 

clarysage oil, essential oils for relaxation pms

Use Of Clary Sage Oil In Modern Medicine

Clary sage has been used extensively in the pharmaceutical and perfumery industry for many years.

 

Research Into The Use Of Clary Sage Oil

“Effect of clary sage oil as an aromatherapy on cardiac autonomic function among patients with premenstrual syndrome – A randomized controlled study” S. Geethanjali, V. Venugopal, S. Poonguzhali, K. Maheshkumar.

“Changes in 5-hydroxytryptamine and Cortisol Plasma Levels in Menopausal Women After Inhalation of Clary Sage Oil”  Kyung-Bok LeeEun ChoYoung-Sook Kang

“The effect of clary sage oil on staphylococci responsible for wound infections” Monika Sienkiewicz 1Anna Głowacka 1Katarzyna Poznańska-Kurowska 2Andrzej Kaszuba 2Anna Urbaniak 3Edward Kowalczyk 3 Pubmed

“Effect of aromatherapy on symptoms of dysmenorrhea in college students: A randomized placebo-controlled clinical trial” – Sun-Hee Han 1Myung-Haeng HurJane BuckleJeeyae ChoiMyeong Soo Lee

The Bioactivites Of Scalereol” frontiersin.org

Contraindications Of Clary Sage

Clary sage shouldn’t be used in pregnancy, on infants and children as an inhalant, it should always be diluted.

How To Purchase Clary Sage Oil In The UK

As a qualified aromatherapist, and ambassador of NYR Organics I highly recommend their Organic Clary Sage Essential Oil

 

Natural Health Solutions For Your Families Health

 

 

 

 

 

 

 

 

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Trauma and the Physical Body

Trauma And Physical Pain. Why Chronic Pain Can Be our Physical Response To A Traumatic Event

Trauma and the Physical Body by Dr Melanie Salmon

Chronic pain is not always the result of physical injury, it may be the body’s response to a traumatic event

Not only damaging to our mental health, trauma can also have an incredible impact on our physical body. Some chronic pain complaints, for example, can be attributed to residual trauma, our body responding to past events through muscle tensing.

So, what is chronic pain? What types of chronic pain are psychological? And how can past trauma affect our current physical state? 

What is chronic pain?

In the UK, around 28 million adults are affected by some type of chronic pain (42% of the population) and globally, more than 1.5 billion (American Academy of Pain Medicine). That’s 18% of the world’s population. 

Chronic pain is defined as pain that lasts for at least 12 weeks, although it may in fact last for several years. It can limit your mobility and reduce your flexibility, strength, and endurance, making it challenging to get through daily tasks and activities. 

 

Collectively, we can categorise chronic pain as somatogenic pain (the cause is found within the structure of the body, the ‘soma’) and psychogenic pain, with the most common types of pain (across both categories) including headache; post-physical trauma pain; lower back pain; arthritis pain; neurogenic pain (pain caused by nerve damage); and psychogenic pain. The latter describes pain that isn’t caused by disease or nerve damage, the cause is thought to be in the mind. 

Trauma and the physical body: psychogenic pain

Psychogenic pain is chronic, disabling pain that is primarily caused by psychological factors. Factors such as beliefs, emotions, fears, or mental illness – like depression or anxiety – can trigger, exacerbate, or maintain pain that started in an innocuous way, such as an accident or fall.

Dr Robert Scaer (amongst others) has shown that chronic stress and trauma has a profound impact on the entire mind-body system, resulting in disease, sometimes decades later. 

Scaer studied the ‘diseases of the freeze’ – those diseases originating from a dysregulated autonomic nervous system – as a result of trauma. This includes chronic psychogenic pain. 

He showed that the majority of what we consider to be ‘arthritis’ of the neck and back is in fact myofascial pain associated with stress and trauma. An MRI scan shows no relationship with pathology. 

Trauma and The Physical Body by Dr Melanie Salmon. Trauma and the Physical Body by Dr Melanie Salmon Chronic pain is not always the result of physical injury, it may be the body’s response to a traumatic event Not only damaging to our mental health, trauma can also have an incredible impact on our physical body. Some chronic pain complaints, for example, can be attributed to residual trauma, our body responding to past events through muscle tensing. So, what is chronic pain? What types of chronic pain are psychological? And how can past trauma affect our current physical state? 

Trauma and the physical body: myofascial pain syndrome 

Myofascial pain syndrome (MPS) is a description of muscle pain: pain and inflammation in the body’s soft tissues. A chronic condition that affects the fascia (connective tissue that covers the muscles), it may involve either a single muscle or a muscle group. 

Myofascial and related chronic pain is often traceable to complex childhood trauma and is always distributed through the back. This can be explained by understanding the back’s role in protecting us from physical trauma or threat. When threatened with violence, the back will step in to protect the body; the muscles of the core are intensely activated, pulling the body into a contracted foetal position for self-defence. 

Picture a five-year-old child who waits for her father to come home. A bully, her father often threatens to beat the children when they’re naughty and walks through the door shouting. Immediately her body reacts by moving into a defensive position. 

If she’s safe enough to do so, she’ll curl up into a foetal position to get the best protection she can. However, if she is unable, she will form an incomplete foetal position. Her body will still want to contract but can’t. This incomplete foetal position will be stored in her muscle memory: tense and trying to contract without being able to. 

The emotional memory of this event is stored in the muscle groups involved in the defence forever afterwards; the emotional memory of trying to defend. The neural pathways are set, and in later life when the body experiences chronic stress – any stress – all these muscles will contract as they always did before, pulling tight into the same type of protective response. Instead of pulling the body into a foetal position, however, the muscles of the back and neck ache with widespread myofascial pain. 

This type of pain is uniquely stress-related.

Neglect and the physical body: example case study

Trauma may lead to a life of low-grade sustained vigilance, sensitive to environmental as well as internal triggers. 

If you can imagine a child that was repeatedly bullied from the age of six years old, while trying to find their place in the world and connect with society, they are rejected and lack social bonding. At home, parents are absent because they work all the time and therefore don’t offer sufficient care-giver support.

The child grows up with low self-esteem, feeling unworthy and unsafe in the world; trust in them and others is diminished. They may develop an inability to express themselves and repress their emotions for fear of punishment, judgement, or rejection. 

 

When confronted with a difficult situation, they bottle their emotions and feel internal anguish, repeatedly releasing toxic stress chemicals into the body. 

 

Their immune system is compromised, making them more susceptible to illness. Over time, they develop chronic pain. 

Healing trauma: body and mind

 

What has emerged from pioneers in the field of epigenetics and neuroscience, is an understanding of the importance of healing past trauma – and doing so by working with the subconscious mind.

While we cannot go back in time and ‘un-experience’ a traumatic event, our history is imprinted within us, crystallizing as our core beliefs or “truths”. To effectively heal from our past we must bypass the rational mind and access the source of our belief systems. 

 

Using the QEC method, we are able to change the belief systems and conditioning

that no longer serve us. The neuroplasticity of the brain allows us to ‘rewire’ our neural pathways, freeing us from the limitations of our past.

In this way, we can fundamentally change the way we feel about ourselves and the world around us.

Most commonly used for working with trauma, depression, grief and loss, stress, health and relationships, you can learn more about QEC here

 

Hippocratic Oath – Do No Harm

Hippocratic Oath - Do No Harm First Is The Most Important Aspect Of The Medical Oath

Hippocratic Oath – Do No Harm First

Is the most important aspect of the medical oath Do No Harm First a priority in modern medicine today?

The Hippocratic Oath – Do No Harm First used to be the first and most important rule for any Medical Doctor, Nurse Or Health Practitioner. Do No Harm First used to be the foundational principle in healthcare, a promise that doctors and healthcare practitioners will decline from doing harm to their patients. But in the world of modern-day medicine, has this become overlooked, lost, or even forgotten? Especially in today’s world where many medical practitioners are finding themself in incredibly challenging and compromising situations. Where most medical care around the world is seriously underfunded, mismanaged, influenced, and controlled by governmental and pharmaceutical agendas.

 

The Do No Harm Dilemma Of The Modern Doctor And Nurse

So much so that many millions of caring and compassionate Doctors and Nurses today are feeling seriously ethically and morally comprised. They know they are not always able to give their clients the care and treatment they know their clients deserve.

But how serious are these issues? Is allopathic medicine doing enough to ensure modern medical medicine and interventions do no harm? Or are we giving too much power, authority, and control over our wellbeing to the pharmaceutical and science world?

 

The Risk Of Harm And Injury?

We all know someone in our friends and family members who has experienced some sort of harm or injury. You just need to look at the approx 22, 000 deaths a year noted to be caused by NHS Medication Errors in 2018 to see just one example of harm.

Many of us know people who have left their mainstream medical profession who felt they weren’t able to do their jobs safely or effectively anymore. So many deeply caring healthcare practitioners at the moment feel seriously compromised, under so much pressure, they want to help heal not harm but are struggling to navigate within a dysfunctional medical system.

In many ways, I believe modern medicine has become more like symptoms management and emergency treatment than anything about actively promoting and empowering patient health and wellbeing. We just need to see the lack of health and wellbeing in many Doctors, Nurses, and other Healthcare Professionals.  Or look at the lack of health promotional videos during covid 19.

Ready To Live A More Holistic Life

 

 

 

 

Modern Medicine And Nutrition

I found it extremely concerning that over the last year there was no major NHS campaign focusing on ways to boost and support the immune system. Absolutely nothing encouraging adequate nutrition and healthy eating. In fact, I saw one shocking BBC program that said eating healthy would not help when basic science an unhealthy diet, an unhealthy body is more likely to have an unhealthy immune system and an issue fighting off a virus or other complications. Or am I wrong??

There was no mention of Vitamin D, Zinc, and Vitamin C in 1st world countries while some 2nd and 3rd world countries were encouraging their people to do what they could to boost their wellbeing. But is this just more proof that mainstream medicine has moved so far into drugs and policies that the basics of health and wellbeing such as good nutrition got lost?

Lets’s look at holistic Nutritionists who spend 3 – 4 years studying Nutrition, they are rarely taken seriously by many Doctors and Nurses who themself as one medical student claims to spend only between 10- 24 hours of study in nutrition over 5- 6 years. As someone with very rare medical challenges and one serious health issue that included threatened eye loss. My greatest health issues were NEVER improved by mainstream medicine, except in a life-threatening issue but that very issue was caused by medical harm and neglect. On so many occasions a suitably qualified Nutritionist and testing helped me get some of my health back when modern medicine told me there was nothing they could do. I had at one time an eye pressure of only 2 and managed to get it up to 10 with nutritional advice.

 

So how much has modern medicine become more like emergency medicine or symptom management? Than about true health care, health promotion, health advice, and wellbeing?

 

The Extreme Mental Pressure Of Medical Practitioners

As someone who has seen hundreds of Doctors and Medical Experts, who has been a participant in different types of medical research and medical studies I do see strands of the broken system. I also found it interesting and refreshing when I speak to maturer Dr’s who have less to prove, they tend to be more objective, more honest, and more focused on Doing No Harm First.

Of course, there are many amazing Doctors, Nurses, Healthcare Providers who always put their patients first. There are amazing medical and scientific breakthroughs that only modern medicine can provide. But we cannot deny the mental, physical, and emotional health state of many Doctors and Nurses, especially at the moment. A reason why so many nurses and doctors are moving out of modern medicine and moving into other careers some more holistic roles, or health coaching roles. Because the mental and physical demands of these roles were impacting their ability to make the right choices or their confidence in challenging the status quo.

Ready To Live A More Holistic Life

 

 

 

The Importance Of Research And Evaluation

One medical friend of mine whose mum has had medical harm due to the recent jab has been completely shocked recently by the naivety of many fellow medical practitioners. How many Doctors, Nurses, and Pharmacists are prescribing or promoting the latest pandemic vaccine to patients but actually have done no proper research on any of its clinical studies, possible and documented side effects. Promoting and giving out something they have not personally looked into. Even more, concerning was that more than a few medical professionals had no idea that this medical intervention was still in the experimental stages and that in phases 1 & 2 many people with certain medical conditions were excluded from the study.

On the other side of that, unfortunately, we are seeing more and more nurses, doctors, and pharmaceuticals who are trying to speak up or question things due to some of the things they are seeing. I have witnessed some heart-breaking stories of nurses, doctors, and scientists who have walked out of their profession because of the pressure and compromise. One paramedic walked out because he was sick of watching patients’ freedom of choice, freedom of body autonomy being abused. Others sick and tired of being told to not ask questions during suspect harmful vaccine side-effects.

As someone myself who has had more than my fair share of medical negligence, medical harm from procedures, investigations, and treatments within modern medicine. I have to say I find it deeply disturbing how much freedom of choice and body autonomy has been taken away in many countries around the world in relation to healthcare and medical interventions. And even more worrying when they have put such a tremendous amount of energy, money into psychological campaigning and into the silencing of world-renowned Immunologists, Virologists, Vaccine Development.

Do No Harm First - Is the Hippocratic Oath of Do No Harm First taking priority in modern medicine by The World of Health

We All Have The Right To Safe Effective Healthcare

I believe we all have the right to medical interventions and treatments that are primarily focused on safety first. And that everyone should have choice, and within that choice access to information and transparency around those medical interventions. I personally wish I knew how potentially damaging some of the medical interventions that I had that I was led to believe were safe which caused me devastating health issues.

And wish I knew 30 years ago what I know about health and wellbeing. Especially about so many of the things we can do to help ourselves and to help others. Don’t get me wrong I totally realise the present dilemma is a difficult one. But the fact we are seeing so many different opinions from all over the world on so many aspects of the current health crisis, especially around the efficacy of certain testing and safety of certain treatments, again is another reason that I believe we should highlight the importance of choice.

One of the things that I struggle to get my head around in relation to PCR testing is being used to test for such a serious thing, when in fact I was told by more than a few Infectious Disease Drs and others in the NHS  over 5 years ago, that this type of testing was inadequate and couldn’t ever diagnose as it could pick up any virus or bacteria. So what is the truth who knows?

All I know is that healthcare surely is supposed to be about doing no harm, your medical doctor or nurse should be doing their own research, shouldn’t be scared of using the yellow card scheme or reporting an issue. I nearly lost my own life in ICU due to an additional issue of Doctors not putting down properly in my medical notes the reactions I had to certain medicines and anesthetics.

On the other hand, we have so many Doctors today who feel they are not being respected, not valued, not listened to by their patients. Surely these issues create a greater divide and can lead to compassion fatigue, burnout,  and frustration. As a society, is it our duty to change the culture of healthcare? Is it our duty to put pressure on our government and healthcare providers? To back up the healthcare providers who want more transparency, who want a much safer and positive health experience for their patients?

I personally believe that for example, a big problem in the UK is that in some ways we have created a nanny state that in some ways discourages self-responsibility for our health. I know through the years many of the Doctors I have met have been shocked at how many things I have done to support my health and how much of my income I invested in my health even when in severe poverty. But no matter what, no matter what country you live in, what you believe about health, you have the right to choose your health and wellbeing choices, especially those that Do No Harm.

 

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Living With Hyperacusis – Noise Sensitivity

The Challenges Of Living With Hyperacusis - Noise Sensitivity Pain In Ears by Eileen Burns

The Challenges Of Living With Hyperacusis ( Noise Sensitivity)

The Challenges Of Living With Hyperacusis. What is Hyperacusis?  And why is hyperacusis such a misunderstood and extremely challenging condition?

So What Is Hyperacusis?

Hyperacusis is an abnormal sensitivity to sound. For those suffering from severe hyperacusis, especially very painful hypersensitivity, it can be an extremely debilitating hearing condition that doesn’t just cause discomfort but for someone like myself at times horrendous pain. Now sadly some people confuse Hyperacusis with Misophonia which is a dislike to particular sounds. There is also a perception that the person is experiencing just sensitivity and uncomfortableness but for some of us the pain can be literally so painful it can feel like someone is stabbing you in the ear.

My Own Story Living With Hyperacusis

I was always slightly more aware of sounds than my siblings I would wake up with noises that other people would sleep through. But noise sensitivity only started to become a life-changing condition over 8 years ago after I ended up in ICU with sepsis. Caused by a dental complication that led me to have nerve damage, lockjaw, and osteomyelitis. Now I had previous weakness in this area, previous nerve damage, and trauma from an injury, and a rare medical condition that left me quite vulnerable to temporomandibular issues.

My Own Story Living With Hyperacusis  I was always slightly more aware of sounds than my siblings I would wake up with noises that other people would sleep through. But noise sensitivity only started to become a life-changing condition over 8 years ago after I ended up in ICU with sepsis. Caused by a dental complication that led me to have nerve damage, lockjaw, and osteomyelitis. Now I had previous weakness in this area, previous nerve damage, and trauma from an injury, and a rare medical condition that left me quite vulnerable to temporomandibular issues. But anyway after recovering from sepsis, which left me with a lot of weakness, and nerve damage down the right side of my face, neck, and body. I developed a lot of problems with certain levels, and types of sounds to my right ear, that would literally cause me to lose my balance. I also had developed a complex movement disorder and what is regarded as non-epileptic seizures which all seem to be seriously triggered by vibration and noise.

But anyway after recovering from sepsis, which left me with a lot of weakness, and nerve damage down the right side of my face, neck, and body. I developed a lot of problems with certain levels, and types of sounds to my right ear, that would literally cause me to lose my balance. I also had developed a complex movement disorder and what is regarded as non-epileptic seizures which all seem to be seriously triggered by vibration and noise.

Now the level of noise sensitivity and pain in my right ear became so unbearably painful that I couldn’t handle so many everyday sounds. My ear and jaw would become very warm and at times the muscles in my jaw would twitch. The horrendous pain was one thing the effect on my conscious and my functioning was something else. It would be like this weird surge of electrical energy in my bring that would like short circuit.  I would end up in pain for days. But despite this level of disability, no Doctor would send me to get my ear checked or tested.

Now initially there was more focus on the cause of other issues, I had the complex movement disorder, non-epileptic seizures, and other neurological issues I had, fine motor skill issues I had. But no one could give me any answers. From the beginning, I believed the pain inside my ear alongside the amount of muscle weakness and the nerve damage I had was creating a vicious circle. But I was simply told there was nothing we can do for you, you just have to live with your conditions. Issues which made me housebound because I would have no control over my body. My body would go into constant violent jerking and spasms so I wouldn’t be able to walk outside etc. And the pain in my ear would be so painful as Tom Maholchic in the video Hyperacusis with Pain describes the sound “explodes in my head” and as another person says in this video is “like an ice pick in my ear”

My Diagnosis Of Hyperacusis

Now to get a proper diagnosis of hyperacusis one of the tests you need to get is a ULL uncomfortable loudness level test. But in many areas sadly this is not readily available from the NHS and well even more challenging is that many doctors don’t even realise that Hyperacusis is an actual real condition, my G.P. didn’t. So despite noise sensitivity for years, increasing levels of pain, and seizures, and doing everything I possibly could to help myself I still hadn’t been seen by an audiologist.

It was only when I discovered I could get a private hearing testing at home which would include a ULL test that things changed. The audiologist was very surprised at what the ULL test showed in relation even to the decibels that correlate with normal speech. For this reason, the audiologist sent a letter to my GP recommending further testing. But even when I finally saw an ENT specialist and the audiologist couldn’t complete the test because of the harm it was having on me. The Dr had no interest in trying to help me,  he was extremely dismissive.

I was then sent to a Tinnitus Clinic, given information sheets and recommendations to treat tinnitus, with only a tiny paragraph that mentioned a bit about hyperacusis. At least in this clinic the practitioner actually asked me a lot of questions especially around my underlying medical conditions, the injury I had, and she was also very interested in the research that I had done. She was honest that the clinic didn’t really treat hyperacusis, she commented they knew nothing about Lyme Disease which is known to cause hyperacusis and other neurological issues and my particular issues were very rare. So I had to find my own solutions in how to live with hyperacusis, how to reduce and treat my sound sensitivity/

The Difficulties Of Living With Hyperacusis

The biggest problem I believe living with hyperacusis for many is that firstly many Doctors and medical professionals don’t actually realise that is a real condition one that can be extremely disabling. A seriously under-researched condition, and as MD Timothy Hain suggests one most in audiology appears to have very outdated views.

Many sufferers living with Hyperacusis are neglected and discriminated against because of myths around sound sensitivity. Some people might find some noises annoying, uncomfortable while others suffer tremendous pain like me. Those few hyperacusis with pain rarely get any help, support, or treatment. Although there is a lot more types of treatment available in the United States.

The facts are sound sensitivity is not something that is well researched or something that many neurologists or audiologists actually study. And then even worse some confuse hyperacusis with misophonia ( fear of loud sounds). Now I also have Parry Romberg’s Disease and I have also have had more than a few diagnoses of different conditions some that are including in my list of different causes of hyperacusis.  I have a lot of underlying complex challenges other than injury actually known to be linked with Hyperacusis so it was very surprising that I had to wait so many years to get a diagnosis.

Different Causes Of Hyperacusis

According to Timothy Hain MD, it is considered Hyperacusis may be associated with damage to the inner ear but there is a lot of debate around that. We do know there are many different conditions and causes linked to hyperacusis these include

  • Autism Spectrum Disorders, Aspergers
  • Chronic Noise Exposure, such as a noisy working environment
  • Central Nervous System Disorders, Brain stem issues
  • Deficiencies – Magnesium
  • Disrupted attenuation reflex as seen in Bells Palsy, M.S,  Menieres Disease
  • Medication – Certain medications for example the antibiotic Ciprofloxacin, psychoactive drugs  LSD, methaqualone, phencyclidine (angel-dust)  have been associated with hyperacusis.
  • Head Injury Of Trauma
  • Late- Stage Lyme Disease
  • Nerve Damage, Facial Nerve Palsy
  • Surgery To The Ear
  • Williams Syndrome, a genetic disorder where hyperacusisis a symptom.
  • Toxicity, Oxotoxicity one reason why you should avoid the overuse of ear drops, get the right medical treatment for ear infections, and ear wax removal.

The reality is according to Haines it is time the audiology community starts realising that hyperacusis sufferers are not the cause of their disease. For a long time, Hyperacusis was viewed by some as psychologically when it is simply an area of medical science that we don’t know enough about.

Different Treatments For Hyperacusis

Although presently there is no technical standard treatment for Hyperacusis especially for those of us with severe pain. There are many who have sound sensitivity that benefit from de-sensitization programs or relaxation therapy. I personally tried de-sensitization the first few years it made things worse. In fact for me the more I removed myself from the pain, the less pain and other complications I aid. I actually have been a stress management trainer, meditation teacher, and coach for many years, and I actually teach relaxation therapy.

The Doctor who appeared to have no interest in helping, initially told me to stop using earphones or earbuds. But this was completely impractical as exposing myself to even everyday sounds caused me to lose my balance, fall, lose control of my body, have seizures, and be in horrendous pain for days. I couldn’t even walk out the door myself. I could only expose myself to certain sounds for small periods in a healthy way when the inflammation and pain in my jaw, nerves, and ear were reduced.

Now although I am still predominately housebound, I am getting better slowly. I can now listen to the TV if it’s down very low. I can handle normal speech if it’s not at a high pitch, without jerking about or feeling is if I am being stabbed in my ear.

Luckily for me, I have found a combination of things that have helped me reduce the constant high levels of pain. I still can’t go out on my own and certain sounds and pitches cause me to have all sorts of issues but I am getting there. These are a few of the things that I found helpful

  1. Dub Earbuds which reduce the decibel of sound in your ear/ears – Invaluable at the initial stages helped me be able to talk on the phone and work online.
  2. Herbal Treatment For Bacterial Co-Infections  Associated With Lyme Disease
  3. Better Denture – I have a lot of TMJ and rare teeth issues, the better the denture the better support for your mouth
  4. Mouth Guard – A well-fitting mouthguard really helped to reduce pain in the jaw and nerves
  5. Craniosacral Therapy – I found craniosacral helpful at releasing a lot of cranial pressure, nerve issues
  6. Magnesium, Vitamin B6 ( Pyridoxine) – Some suggest magnesium and B6 deficiency can be a cause of hyperacusis
  7. Muscle Therapy, Physiotherapy exercises to support the neck and head muscles.
  8. Meditation – Thank goodness I learned meditation many years ago, a life safer to cope with extremely challenging situations and of course reduces anxiety and stress.
  9. Relaxation Therapy – Helps to relax the muscles, nerves as much as I can  luckily this has been one of my areas of expertise for many years and has helped me cope
  10. Visit a Chiropractor to help solve any alignment and trauma injury to the body, this can make a huge difference to many people.

Common Recommendations For Hyperacusis

  • Use Of White Noise Machine
  • Medical Treatment For Any Ear Infection
  • Proper Ear Wax Removal- – Don’t ever use cotton buds.
  • Meditation – I am lucky to have been a meditation teacher for many years and thankfully this helped me keep sane.
  • Relaxation Therapy – I have taught Relaxation Therapy for many years and for most people with stress-induced hypersensitivity relaxation techniques can be very helpful.
  • Stress Management – Stress will increase symptoms of hyperacusis so it is important to manage your stress.
  • Trauma Therapy – There is a wide range of trauma therapies available that can be helpful to some types of noise sensitivity or sound intolerances.

Also, it should be a must that if you have any sort of ear pain that you do get it checked, that you get treated for an ear infection and that you always get ear wax removed by a professional.

 

 

 

 

 

 

Multiple Sclerosis – Teens with MS Face Unique Set of Challenges

Multiple Sclerosis – Teens with MS Face Unique Set of Challenges

How Teens with MS Face a Unique Set of Challenges

Women are more than twice as likely to develop Multiple Sclerosis as men. Multiple Sclerosis usually affects people between the ages of 20 and 50 years, and the average age of onset is approximately 34 years. Multiple Sclerosis can affect children and teens (pediatric MS). 

I was 17 when I was diagnosed with Remitting-Relapsing Multiple Sclerosis (RRMS) in 1987. Back then MS was not very well known, and the Internet didn’t exist either, so no real way to research what MS is, other than taking the word of my Neurologist. I remember having symptoms as early as the age of 14.

I was constantly tired, and couldn’t keep up with my fellow students in gym class, running track. I slept a lot. My parents thought I was just being lazy. Because I was affected so early on in my life with MS, I knew I wanted to help others who were newly diagnosed with MS in whatever way I could. So I wrote a self-help book “Blue Fingers Brass Knuckles” full of diagrams, questions to ask your doctors, how to cope with the diagnosis through laughter, and the power of inspiration, faith, courage, and love.

In today’s world, MS is a common household word and you can Google information about MS. However; unless you’re following a teen with MS on social media to know the unique set of challenges that comes with it, you won’t know until you experience it…and even then, you’re left wondering…is this MS or just me?

Emotional Issues Of Teens With MS

There are approximately 8,000 to 10,000 Americans who have been diagnosed with MS before their 18th birthday. Although pediatric MS cases are rare, some studies estimate that 2 to 5% of all people with MS had symptom onset as a teenager or even younger. The good news is that pediatric MS specialists say teens who begin MS therapies soon after their diagnosis rarely develop disabilities before their 20th birthday and can lead a relatively symptom-free life well into adulthood.

“There’s some evidence that people who get pediatric remitting-relapsing MS move to progressive MS slower than those who are diagnosed as adults,” says Tim Lotze, MD, associate professor of child neurology at Texas Children’s Hospital at the Baylor College of Medicine. “Maybe that’s because the “lucky” ones who are diagnosed earlier start on treatment sooner.”

Different Physical Symptoms Teens With MS

But while teenagers may have fewer physical MS symptoms than adults, they can have more emotional or mental issues. Adolescence comes with all kinds of angst. Add in an MS diagnosis, and the stress can skyrocket. “You grow up fast when you’re diagnosed that young.” Here’s what I, other teens, their parents, and healthcare providers have learned about living with MS as an adolescent.

Difficulty with Diagnosis In Children With MS

The number of children diagnosed with MS seems to be holding steady in recent years, although accurate data is lacking, says Brenda Banwell, MD, chief of the Division of Neurology at Children’s Hospital of Philadelphia and director of the hospital’s Pediatric Multiple Sclerosis Clinic. However, the awareness of pediatric MS has increased considerably among healthcare practitioners, meaning children are more likely to be diagnosed quicker.

There’s also a growing amount of research focusing on pediatric MS.

 The Canadian Pediatric Demyelinating Disease Network has performed a comprehensive prospective analysis of children with a first attack of what may be MS and has published extensively on the clinical, biological, and MRI features of MS in children.

 Doctors and scientists affiliated with 18 clinical centers throughout the United States have formed the Network of Pediatric Multiple Sclerosis Centers to study the causes and treatment of pediatric MS. To learn more, visit usnpmsc.org.

These and other studies show that while MS symptoms are similar in teens and adults, teens may be more difficult to diagnose.

“Teenagers may have more vague symptoms like their back hurts, or they’re having headaches or migraines with blurry vision or they’re having trouble walking,” says Soe Mar, MD, director of the Pediatric Onset Demyelinating Diseases and Autoimmune Encephalitis Center at St. Louis Children’s Hospital at the Washington University School of Medicine. Couple those indeterminate symptoms with normal teenage stress and Dr. Mar says some clinicians may think a teen with MS is suffering from physical symptoms that are due to psychological trauma rather than MS.

Specific Teenage Symptoms Of Multiple Sclerosis

The onset of MS in children and youth is associated with a higher relapse rate and a higher volume of brain lesions, relative to early MS in adults. Pediatric MS occurs in the context of normal academic learning and during brain maturation. Of note, 30 to 40% of children with MS have a cognitive impairment, Dr. Banwell says. This impairment varies from mild to severe and mainly involves executive functioning, such as multitasking, organization, attention skills, processing speed, and word finding.

About a third of teens with MS have emotional issues, such as depression or anxiety or combination of both. But this mirrors the general population of teenagers, so it can be difficult to tell if MS is the culprit for mood disorders or if it’s simply being a teenager. Either way, mental health is an important facet of care for youth with MS.

When I was diagnosed at 17, I was devastated. Thinking I had something like cancer that I would die from. I was an emotional wreck. It was affecting me in every facet of my life. And because we didn’t know much about MS back then, doctors didn’t realize that mental health is an important part of “health care” for me, so I was stuck working through these emotions by myself.

That’s why I can’t emphasize enough how important is it to have partnerships with psychiatrists and psychologists for teens who have MS. These professionals can help teens and their parents sort out what’s causing depression or anxiety and how to best treat it.

Research shows that teenagers also tend to have more frequent relapses than adults, perhaps because they haven’t yet developed full nerve myelination, Dr. Lotze says. A 2014 study published in Multiple Sclerosis Related Disorders shows that children have 2.3 times more relapses than adults per year. The flip side is that children recover much better than adults from relapses,” Dr. Lotze says. “There seems to be fewer residual symptoms, maybe because myelin in children can repair faster. Or there could be something innate in the pediatric brain that can make new networks after an MS relapse.”

The Importance of Medications In Teens With MS

While MS therapies can reduce disease activity in teens, the key is persuading them to consistently take their medications. “A lot of teenagers don’t think they need medications after they recover from a relapse,” Dr. Mar says. Most teens think “I just want to be a normal kid and not have to take 20 pills a day or go in for my injections.”

Several high school students who were recently diagnosed with MS were interviewed on the importance of taking their MS medications and the response was amazing. One student says “it helped when her mom told her that MS was like having diabetes. Another student said, “If taking my medication will keep my MS symptoms away, I’m all for it…but I don’t like it.”

Multiple Sclerosis - Teens With MS Face Unique Challenges. How teens with M.S. have a variety of difficulties and challenges to face

Early-stage Coping In Teens With MS

While an MS diagnosis can be devastating for anyone, it can be particularly difficult for teens and their families. Parents struggle to accept the diagnosis. “No one expects a child to be diagnosed with an adult disease,” Dr. Banwell says. One thing teenagers have going for them, though, is resilience.

There are many documentaries, YouTube videos, and programs on TV that tell stories of other teens with MS and how they overcame their fear. For example: there was an ESPN program on a female runner with MS. A boy who is an offensive lineman on his middle school and high school football teams approached his diagnosis like an athlete. He talked to a sports psychologist who told him that he only needed to focus on his MS for the five minutes a day he injected his medication. So, for 23 hours and 55 minutes, live life like you don’t have MS. Staying positive that MS won’t affect the rest of your life in a big way.

Freaked-out Parents Of Teens With MS

When my Mom and I walked into my neurologist’s office and were told I had MS my Mom bawled for at least 20 minutes. We looked at each other with that Mother-Daughter look knowing we had to stick together and be there for one another. Each other is all we had. This is a typical reaction for any parent as they don’t want to hear that their child has been diagnosed with an incurable disorder.

Sometimes the parents can be more of an issue for a physician than the child, due to them reading about medical journal articles and studies about MS regarding what could happen to their child. It’s terrifying! “Teenagers have a sense of invulnerability, so their MS can fade into the background. That’s not the case for the parents.” Dr. Banwell said a colleague recently completed a study showing that the impact of a child’s diagnosis with MS is so substantial for parents that they can end up using more healthcare resources than their child.

I believe having a strong support system is key for helping parents cope with their child’s disease. There are many online as well as in-person support groups, such as: Pediatric Multiple Sclerosis Alliance Group on Facebook,  myself The MS Wellness Coach for Natural Approaches to healing and Families Fighting Against MS.com and National Multiple Sclerosis Society for United States, and MS Society UK, MS Australia.org.

When you have a child, who has such a serious disease, you must have a strong support team. You cannot do this by yourself. Connecting with other parents of children in similar situations to ask questions to, and get support from, is invaluable.

Overcompensating Teenagers

While parental stress about their teen’s MS diagnosis is understandable, it can create additional emotional issues for the child. This is all happening while kids are at the age of trying to get independence from their parents. Teens tend to avoid talking to their parents about their disease because they don’t want to worry them.

One teen said “I look like a different person when I relapse. I look so sick, and I know that upsets my parents. I would talk to my Mom about it, but I don’t want to make her even more upset,” Napier says. “My Dad calls me constantly to see how I’m feeling. It breaks my heart to see how worried they are. I wish there was a way to let them know I’m going to be OK.”

Teenagers can also hide their feelings for other reasons. Many blame themselves when diagnosed with MS. “I was getting all this attention from my Mom because of my symptoms, and frankly I was enjoying it.” After the symptoms subsided, the initial attention from my Mom went away. I started wishing that something else would happen again so I would get more attention.” It’s sad, but true I felt this way. And then, I found out I had MS. I felt like it was my fault even though deep down I knew it wasn’t. It can take several months to stop feeling devastated that they “brought the disease upon themselves” and to admit those feelings to their family and friends.

Dr. Lotze says a key to breaking through these types of communication barriers is for parents to “not hide anything from the kid from day one. Parents need to make a plan on how to talk to their son or daughter.” A therapist can also help the whole family, including anxious or resentful siblings, open lines of communication.

School Relationships

Family relationships aren’t the only ones that suffer when teens are diagnosed with MS. Teens can face misunderstanding or even bullying about their disease. Most teens don’t want to tell their classmates about their MS diagnoses because they don’t want to be treated differently, or that rumors would be spread. They don’t want to be labeled “teachers’ pet” because of being allowed to turn in assignments late or eating lunch in the nurse’s office to rest. However; if you don’t face the truth by telling your story to stop the rumors, people will continue to say what they are going to say without knowing the truth.

The best way most teens find it helpful is to make a video so the entire school would know you have MS. You’re not looking for sympathy, you’re looking for support. Upload it to your YouTube channel, then post it on your social media. Word spreads. You can also ask the principal if they can post a link to your video for the school to see. By telling your story, the gossiping, the whispers, and the bullying will help stop this and help you make friends. MS is a lonely disease, so get out there and tell your story. You need a support system in every facet of your life.

 

Learning How to Be Different

It’s OK to not be OK. Being different from classmates is hard…. missing out on being excited to have your crush take you to homecoming or attending school football games with your friends. Keeping a positive mindset makes all the difference in the world, it will keep you moving forward, climbing up this hill called life, and MS is just one more thing in your backpack to make you stronger.

Perhaps being diagnosed with MS has sparked an interest to be a neurologist specializing in pediatric MS. Or being an MS advocate helping others with their meal plans and workouts. This can include becoming a health and wellness coach,  specializing in helping others with MS to manage their symptoms naturally. By now, you can see the blessings of being diagnosed with MS as a teenager. You can show others that you can get through anything.

The MS Wellness Coach

Hi, I’m Jen Martin a Master Certified Wellness Coach, specializing in helping women with MS to combat fatigue, increase energy levels, and improve their overall health naturally, so that they can live life with vitality and abundance. On Facebook, I’m known as The MS Wellness Coach – empowering those living with MS and other auto-immune disorders how to manage their symptoms naturally.