Is it M.E. or Lyme Disease or Mercury Poisoning? As someone who was diagnosed with M.E. approx. 25 years ago after living with a very long list of strange and chronic debilitating symptoms for a number of years. The last few years I have began to doubt my diagnosis.
So Is It M.E. Or Lyme Disease Or ???
Other than experiencing most of a very long list of typical M.E./CFS typical symptoms and Fibromyalgia. I have experienced a wide range of unrelated conditions and symptoms that have baffled specialists especially rare symptoms in my left eye, in-fact threatened eye loss in my twenties.
And even stranger neurological complications that appeared in my 40’s. So much so that I began to question my diagnosis and wonder if in-fact I had Late-Stage Lyme Disease. You see at the age of about 14 I had strange bites in my leg which left my legs and feet very swollen. So swollen I couldn’t put my shoes and go to school. Which now on present observation looked very like the bulls-eye rash caused by a tick bit. Ticks are carriers of a variety of bacteria and co-infections known to cause Lyme Disease
But the challenge with Lymes Disease is, it isn’t straight forward to diagnose or treat. There is a huge out cry around the world on inadequate lyme testing and lyme’s co-infection testing. A lot of research suggests for example the NHS testing in the UK is not fit for purpose. It is viewed by many that NHS lyme testing is one of the most inadequate tests at detecting the actual disease and or it’s co-infections. So much so that masses of potential or suspecting lyme sufferers in the uk are being tested and treated abroad. Many spending tens of thousands of pounds on treatments abroad just to get some relief.
What Are Common Symptoms Of Lyme Disease?
Let’s take a closer look at some of the most common and similar syptoms seen in M.E. and Lyme disease. Other than the unexplained exhaustion, chronic fatigue, cognitive impairment, general brain fog and memory problem which include poor recall and word retrieval. memory problems. We see migraines, balance issues, weakness in the legs, muscle and joint pain, fibromyalgia, digestive and gut issues….So there is not always a clear definition. Dr Sarah Myhill believes many people with M.E have M.E. because of untreated lyme disease.
Late Stage Un-Treated Lyme Disease
In late stage lyme disease, lyme’s is known to mimic many diseases like M.S., Parkinsons Disease and A.L.S. Late stage lyme symptoms can include a variety of neurological complications such as cranial neuritis, unexplained seizures, light and noise sensitivity, bells palsy, tic movements, complex movement disorders.
Lyme disease has also been show to be linked to unexplained eye complications. Such as optic atrophy, optic nerve atrophy, a swollen optic disc, detaching retina, light sensitivity, low intro-ocular pressure, chorioretinal folds, abnormal pupil size, dry eye … All symptoms, I was diagnosed with in my 20’s that top eye specialists and neurologist have never been able to explain. But there is one other rare medical condition I was diagnosed as a young child that could be a factor.
Parry Rombergs Disease
I developed Parry Rombergs Disease as a young child. A disease that leaves leaves many people seriously disfigured and some with certain neurological conditions. Luckily for me I was only slightly affected cosmetically an indentation running down my face and atrophy to my right nostril. Alongside a life time history of nerve, cranial, eye and teeth issues. So who knows?
Another big question around many of my health symptoms has been around mercury poisoning. Yes mercury poisioning. You see at the age of 19 after a routine root canal treatment, I woke up to a very swollen face. Unable to get a hold of my dentist who has treated me, who over night had suddenly retired and was no longer available. I found myself at my employers dentist.
I have never forgotten the shock on this young dentist’s face and the words ” who did this to you?” As he explained to me that the previous dentist had actually put mercury up my root canal. Now I had no understanding of dental procedures. I was young and wasn’t really aware or interested in the dangers of mercury. And obviously had no idea what would happen over the next few days.
When My Life Changed
Little did I ever imagine how much those next few days would change my life. Very quickly, I came down with what appeared to be a very very bad flu. Something I have never ever felt, I fully recovered from. Something that seem to completely change me from a late teen full of energy and passion at a peak stage of my life. A girl that walked several miles daily, loved to dance at the disco till it closed. Had a full-time job and a part-time job as a dressmaking teacher. To a young woman that struggled to lift her head, my body so weak I could hardly walk to the bathroom.
It was at this point in my life I started suffering from unexplained episodes of paralysis. Alongside fluctations in temperature, horrendous muscle and joint pain, and a variety of digestive issues that only got worse. A fatigue that meant even a short walk for a few hundreds yards, could leave me exhausted for days.
Diagnosed With Post Viral Fatigue Then M.E.
Eventually I was diagnosed with post-viral fatigue and then M.E. I spent many years doing everything I possibly could to get my health back. While the medical profession could offer me nothing.I spent a large chunck of 7 years mostly housebound and at times bedbound. Until I got some of my strength and better mobility back. But I was still chronically ill and had threatened eye loss. Such low eye pressure and an unexplained hole in my eye that specialists couldn’t explain.
Until a few years later, when a visit to a holistic dentist showed me something very intersting on a chart he had. A chart that clearly showed where the meridian line and nerve from that particular tooth was connected too. And surpise surpise it ran all the way up to the area of of my eye where there was degeneration. There is a lot of evidence of how dangerous and toxic mercury is to the body, to the immune system and its direct influence on bacteria. One study on mercury leakage from dental fillings on primates, demonstrated the “increase in mercury- and antibiotic-resistant bacteria in oral and intestinal floras” We know mercury was never meant to be in the body and how many countries have banned the use of mercury fillings. I doubt I will ever know exactly how much mercury has played in my complex medical challenges. But a combination of lyme or lyme co-infections or a viral infection alongside mercury would be enough. Enough of a compromise on the system to trigger all sorts of symptoms.
M.E. Or Lyme Disease, What Are The Main Differences?
I am in no way an expert on M.E. or Lyme and will never claim to be. I have seen enough clients with M.E. in my own work to know that M.E comes in all shapes and sizes. And in some ways could be viewed as an umberella term for a combination of symptoms. A list of symptoms where unexplained exhaustion and severe fatigue and whole host of horrendous symptoms are the most prominent feature.
But I also know most of the M.E sufferers I have met or known don’t suffer from periods of paralysis or have had threatened eye loss. They don’t suffer from the unexplained non-epileptic seizures or a complex movement disorder triggered by severe hyperacusis ( sound sensitivity). Or parkinson type tremours and fine motor skill issues that I started to suffer over the last 5 years. And a host of other complications seen in Lyme
I was very lucky for a large part of 15 years I got a big part of my life and health back. Even though I still had many health and mobility issues. But after a life threatening episode of sepsis things began to change. Since this blog was first written in Jun 2016 a few things have changed and some have remained the same
Holistic Treatment For Lyme And M.E.
For the last 4 years I have been mostly housebound. But thankfully to the help of a long list of highly experienced and qualified holistic practitioners I am slowly getting better. Like the last 30 years I have had help from nutritionists, herbalists, homeopaths, top healers, bodyworkers, private physiotherapists ( because I was told NHS physios couldn’t treat me).
I have been told over and over again there was no treatment and no explanation. An odd Doctor a long the way has nodded that yes I probably have Late-Stage Lyme. But according to the NHS guidelines at the moment most GPS’ and Dr’s hand’s are tied. Lyme disease testing and treatment is a highlighted minefield. Late stage untreated lyme for over 35 years well that’s a whole new issue.
According to the Horowitz Lymes – MSIDS Questionnaire if you score over 46 you have a high probability of a tick borne disorder, (lymes or one of its related co-infections). I scored 126.
Testing For Late Stage Lyme Disease
Now after a lot of neurological tests and bit of battle with the NHS here in Scotland, I finaly got an NHS lyme test. But despite having many symptoms seen in some lymes co-infection, I was refused testing for this. When I asked if testing changed for Lyme Disease would I be allowed to have a re-test, I was given a flat NO. My test according to NHS was negative. But later testing in of the most highly recommended labs in Germany and other testing abroad suggested otherwise. Both suggested various lyme co-infections.
I know that no testing and the moment is guaranted to have 100% accuracy and I can’t be completely sure. But if I arrived today in a Dr’s surgery with the bulls eye rash I had over 35 years ago. I would be viewed as having a tick bit, the symptoms I developed as Lyme
So many people diagnosed with M.E. or Lyme Disease or other complex condition’s spend a lifetime trying to self-heal. Lack of awareness and apathy seems to contribute to some of the discrimination in our present medical system. Here in the UK, where we are supposed to be all entitled to free medical treatment, all treated equally. Something is clearly not working. Like many chronic complex health sufferers I have been left just to get on with it. And have been left to spend most of my income on my health, help and solutions.
And although l believe we all have to take as much responsibility as we can for our own health and wellbeing. I also maintain that the present medical model is failing many people.
I will be forever grateful for the compassionate Dr’s, nurses, healers and therapists that have tried to help me along the way. Those that saved my life, those that have tried and cared. I am equally blessed to have found my life’s purpose as a healer, coach and therapist in my health challenges.
But a person’s quality of life can be seriously thwarted by not just the limits of their disease. But even more so by the neglect of care or support they are given socially and medically. It doesn’t matter if you have M.E. or Lyme Disease, CFS or Mercury Poisoning. You deserve more.