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This page offers some patient stories.These stories are published as submitted, and not edited or verified by Caudwell LymeCo Charity.
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- Symptoms that helped you recognise you had Lyme disease, which may help others learn about the illness,
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I started a Blog to find some purpose in my chronic and longterm unhealthy life. http://www.living-brightly.com was born with the intention to learn as I go along, and to help others….
Ironically, through writing, new avenues to explore did arise and after 20 years of misdiagnosed ME/CFS Lyme Disease, Parvo Virus and a whole can of worms was opened. I am collecting syndromes but now I believe I’ve hit the root cause – microbial illness – from lyme, confections, parasites, virus’s and possibly more. The way I see is my immune system was knocked out and couldn’t fight anything more – this led to autoimmunity and thyroid/adrenal issues. I always have known there was a deeper root cause and it shouldn’t have took the pain and effort it has taken me and my family to even begin to have an idea of whats occurring. It is truly shocking and I have not been given any help and have had to find my own private overseas specialists through more grit and determination. It is beyond exhausting but I feel luckier than many. My hope has never left even after 20 years of being mostly housebound (and worse) and I will get better and share my story. I would love you to read the below blog piece which actually quite accurately portrays how as a sufferer it does take an incredibly long while to whitle the illness down to Lyme Disease. It only appears as you dig. layer by layer. Yet until a year or so ago, unbelievable. the world of infections had not even entered my radar – and I can’t believe someone who researches and consults with leading experts as much as I took so long to even discover its existence.
Getting well, or even the possibility of this is incredibly expensive as things stand. I have not been able to work since leaving university 16 years ago. My family support me but are not able to finance medical bills. I hesitantly was forced to allow my lovely sister to set up a fundraising page for me – which I also blogged about as I am huge resistance and it felt somewhat shameful – because at the end of the day I have to get better.
*At the time of writing the blog below I was not aware of Lyme disease yet. You can see how it all unravels (and how complex it is deciphering it all when it overlaps and causes so many other conditions) and now I believe this is the catalyst for it all.
With Love
Carly
Blog Extract: Living with Autoimmune Disease and Parvo Flu Virus and Lyme.
“I can pinpoint the exact date my catastrophic downward health spiral and hence my journey living with Autoimmune Disease (and other illness’) began. You do tend to remember with crystal clarity when (overnight) you transform from being a healthy fit 16 year old to someone plunged deep into the midst of illness and fear.
I was thrown into the all consuming chaos on New Year’s Eve 1995 to be exact, just a few months after we had relocated 200 miles to Kent. A year of massive change climaxing in to something far greater than anyone could ever anticipate.
And not in a good way.
My friend Emma had come down to stay with me and we celebrated at a pub with a group of people we barely knew, feeling the (heightened) self-consciousness of being teenagers wildly out of our comfort zones. To be honest whilst we were determined we would be out as the dongs chimed Midnight, the dressing up and giggles getting ready together were a millions times more fun, and secretly we were both relieved to get back home as soon as we could – our reputations in tact at least.
I remember the night so clearly. A sense of unease and apprehension mingled with excitement. Wanting to fit in and build up my social life in this new place. I wore a short black dress with a shiny silver T-shirt. My Denim jacket in no way sufficient for the freezing cold 20 minute walk we took.
In hindsight I’ve often wondered if something so simple as switching that jacket for a cozy fleece parka could have saved me? If I had never caught the Flu that night would I have never developed a Chronic Disease?
Crazy harrowing thoughts?
……Besides I already felt slightly overdressed amongst these new alien people brazenly wearing their mum’s bright red shift dresses and high heels. At least Emma and I had tights on!
In truth I believe that the stage was set for my Autoimmune Disease to develop a long while before it was presented with the ideal opportunity to emerge. A combination of perfect circumstances coupled with a strong genetic predisposition and a complete lack of any knowledge (on my part) which could have helped protect me.
Once triggered, this intensely dramatic roller-coaster ride took on a speed and direction of its own and I was simple an unwilling and increasingly terrified passenger clinging on.
……
I woke up that New Year’s day with a raging sore throat, aching all over and in total pain. I had never felt this ill before. To be fair, aside from the odd traditional childhood illness I had never really even been sick. This was the Flu and it felt terrible!
But at least it would only last a few weeks right?
for it is the the duration of time which takes this type of Disease to a level most simply cannot imagine.
Actually, what happened was that I never really recovered fully and eventually I was diagnosed with ME/CFS, but I knew in my heart that there was much more going on which the doctors were missing. I could feel it deep within my bones. A fearful premonition and dreadful insight that whilst things were okay-ish for the initial 5 years, this was going to get worse before it got better.
Much worse.
And I was right.
Following University I became bed-bound. For a couple of years perhaps. Progression to a decade (or so) of being primarily housebound then cuts a (very) long story short to fill you in on the extremity of it all. People asked me how I felt and I had no answer. All I could manage was;
“It is like having the worst hangover combined with the Flu, and x 100.”
Yet of course the truth is always a million times more complex and my words lacked the insightful conciseness and accuracy needed to portray this physical and mental nightmare. I didn’t understand what was happening to me so I couldn’t even begin to explain it to others.
My identity and self-worth diminishing daily as I retreated from the world.
At a time when I should have been tentatively embracing adulthood I was weak and vulnerable. My anxiety ever present and sky high. My family my everything. A million feelings impossible to convey. Everything had changed…… And then once I got stuck in the deep murky depth of it all, it felt like nothing was ever going to change again.
Heartbreaking for everyone involved.
Only someone who has been there or has lived with a sufferer will ever fully comprehend.
…..
I was eventually additionally diagnosed with Hasimoto’s Disease in 2000 which is an Autoimmune Thyroid condition where the body begins to attack itself. Replacement hormone is needed but in my case this also caused confusing (and unusual) reactions. My adrenals were a total mess and replacement was also sought here, but there was still something massive dragging me down and it took me until now (Sept 2014) to find another major piece of the missing jigsaw puzzle.
It seems that in fact really I have indeed had the Flu for 19 years!
That initial flu Virus which struck me down (all those years ago) was the Parvo B19 Virus strain and for *some reason I never was able to fight it properly which is rare. My body became incapable of mounting an adequate immune response against it after a while, and the virus is still measurably active in my body today. I no longer produce any antibodies to fight it and it continues to rage and cause utter havoc – albeit less so with all the good measures I have passionately implemented over the years to counteract the damage.
WOW!
Proof at long last and an extraordinarily bittersweet answer which rocked my world!
Shock. Amazement. Relief. Gratitude. Hope. Euphoria and a million questions……
“Maybe now I can stop blaming myself for not getting better results?”
“Maybe now I stand a real a chance at recovery/treatment and can let myself dream of one day getting married, having a baby and having a job?”
“But how was this not found earlier???”
Looking back I believe the Flu infection was severe enough to encourage the trigger of my Autoimmune Disease and was the catalyst for all that ensued.
“There is strong evidence that acute parvovirus B19 infections are involved in the pathogenesis of some cases of Hashimoto’s thyroiditis.”
(A 2008 PubMed Research study)
All I know is that my immune system got crazy confused and severely compromised. The virus was able to take residence and set up home and in this (weakened) state I was further vulnerable to every other infection and potential pathogen which came my way. I was living in a body which could barely tread water. I certainly did feel as though I was drowning back in the worse days.
…..
So just how do you even begin to find your way out of this complex maze? How do you start to unravel 19 years and put the pieces back together?
You do with Courage, Strength, Intelligence and Tenacity.
And above all else you do it with Faith, Spirit and Belief.
Recovery and healing from Autoimmune Disease begins with yourself. You need to find the root cause and the initial triggers. You will need to become your own best Doctor and this will be a full time (and unpaid) position. It takes a very long time and I admit that I am very much still a work in progress myself.
*All of the above are ongoing and even now there are areas which I need to work upon – mostly around forgiving myself which was a huge revelation as I wrote this article.
……
Healing and Recovery from Autoimmune Disease (and the rest) is a unique and individual path. There have been many humble lessons I have learnt along the way and the most valuable of all is that whilst THIS is certainly my story and I share it openly with you, I AM NOT MY STORY and I AM NOT MY DISEASE.
I am quite simply ME and always have been. I will grow and evolve but that can never change.
Deep down beneath all the layers I am a soul which is perfect regardless.
I find comfort in this knowing.
[line]
*Update May 2015 – It is looking like Lyme Disease and Co-Infections may also be part of the bigger picture and root cause. I shall carry on unravelling as I go ….
**Update March 2016 – I am still very much in the murky midst of this cruel illness and life is very limited and restricted. I still am unwell every single day and barely leave the house. The Lyme Disease picture is soooo much bigger and scarier than I could ever have comprehended. I admit to feeling massive fear and other mood issues of late, and very much want to start seeing some improvement.
HI, I wrote a really long reply can you let me know if you received it please as I had no response? Thanks
From my wellbeing blog http://www.living-brightly.com which I started as a way to find some purpose in a restricted life. Ironically through writing the world of infections and Lyme has presented itself to me. It is mind-boggling to say the least. This article (below) was penned before I had considered Lyme but it quite accurately portrays the layers we go through as sufferers to get anywhere near a diagnosis; and how many other illness’ we accumulate through this disease. I believe infections and virus’s and microbial illness to be my root cause now and cannot believe its taken me 20 years (of being very sick constantly) to get to this point.
Best Wishes
Carly
Living with Autoimmune Disease – Ive had the flu (and more) for 20 years!
I can pinpoint the exact date my catastrophic downward health spiral and hence my journey living with Autoimmune Disease (and the rest) began. You do tend to remember with crystal clarity when (overnight) you transform from being a healthy fit 16 year old to someone plunged deep into the midst of illness and fear.
I was thrown into the all consuming chaos on New Year’s Eve 1995 to be exact, just a few months after we had relocated 200 miles to Kent. A year of massive change climaxing in to something far greater than anyone could ever anticipate.
And not in a good way.
My friend Emma had come down to stay with me and we celebrated at a pub with a group of people we barely knew, feeling the (heightened) self-consciousness of being teenagers wildly out of our comfort zones. To be honest whilst we were determined we would be out as the dongs chimed Midnight, the dressing up and giggles getting ready together were a millions times more fun, and secretly we were both relieved to get back home as soon as we could – our reputations in tact at least.
I remember the night so clearly. A sense of unease and apprehension mingled with excitement. Wanting to fit in and build up my social life in this new place. I wore a short black dress with a shiny silver T-shirt. My Denim jacket in no way sufficient for the freezing cold 20 minute walk we took.
In hindsight I’ve often wondered if something so simple as switching that jacket for a cozy fleece parka could have saved me? If I had never caught the Flu that night would I have never developed a Chronic Disease?
Crazy harrowing thoughts?
……Besides I already felt slightly overdressed amongst these new alien people brazenly wearing their mum’s bright red shift dresses and high heels. At least Emma and I had tights on!
In truth I believe that the stage was set for my Autoimmune Disease to develop a long while before it was presented with the ideal opportunity to emerge. A combination of perfect circumstances coupled with a strong genetic predisposition and a complete lack of any knowledge (on my part) which could have helped protect me.
Once triggered, this intensely dramatic roller-coaster ride took on a speed and direction of its own and I was simple an unwilling and increasingly terrified passenger clinging on.
[line]
I woke up that New Year’s day with a raging sore throat, aching all over and in total pain. I had never felt this ill before. To be fair, aside from the odd traditional childhood illness I had never really even been sick. This was the Flu and it felt terrible!
But at least it would only last a few weeks right?
for it is the the duration of time which takes this type of Disease to a level most simply cannot imagine.
Actually, what happened was that I never really recovered fully and eventually I was diagnosed with ME/CFS, but I knew in my heart that there was much more going on which the doctors were missing. I could feel it deep within my bones. A fearful premonition and dreadful insight that whilst things were okay-ish for the initial 5 years, this was going to get worse before it got better.
Much worse.
And I was right.
Following University I became bed-bound. For a couple of years perhaps. Progression to a decade (or so) of being primarily housebound then cuts a (very) long story short to fill you in on the extremity of it all. People asked me how I felt and I had no answer. All I could manage was;
“It is like having the worst hangover combined with the Flu, and x 100.”
Yet of course the truth is always a million times more complex and my words lacked the insightful conciseness and accuracy needed to portray this physical and mental nightmare. I didn’t understand what was happening to me so I couldn’t even begin to explain it to others.
My identity and self-worth diminishing daily as I retreated from the world.
At a time when I should have been tentatively embracing adulthood I was weak and vulnerable. My anxiety ever present and sky high. My family my everything. A million feelings impossible to convey. Everything had changed…… And then once I got stuck in the deep murky depth of it all, it felt like nothing was ever going to change again.
Heartbreaking for everyone involved.
Only someone who has been there or has lived with a sufferer will ever fully comprehend.
[line]
I was eventually additionally diagnosed with Hasimoto’s Disease in 2000 which is an Autoimmune Thyroid condition where the body begins to attack itself. Replacement hormone is needed but in my case this also caused confusing (and unusual) reactions. My adrenals were a total mess and replacement was also sought here, but there was still something massive dragging me down and it took me until now (Sept 2014) to find another major piece of the missing jigsaw puzzle.
It seems that in fact really I have indeed had the Flu for 19 years!
That initial flu Virus which struck me down (all those years ago) was the Parvo B19 Virus strain and for *some reason I never was able to fight it properly which is rare. My body became incapable of mounting an adequate immune response against it after a while, and the virus is still measurably active in my body today. I no longer produce any antibodies to fight it and it continues to rage and cause utter havoc – albeit less so with all the good measures I have passionately implemented over the years to counteract the damage.
WOW!
Proof at long last and an extraordinarily bittersweet answer which rocked my world!
Shock. Amazement. Relief. Gratitude. Hope. Euphoria and a million questions……
“Maybe now I can stop blaming myself for not getting better results?”
“Maybe now I stand a real a chance at recovery/treatment and can let myself dream of one day getting married, having a baby and having a job?”
“But how was this not found earlier???”
Looking back I believe the Flu infection was severe enough to encourage the trigger of my Autoimmune Disease and was the catalyst for all that ensued.
“There is strong evidence that acute parvovirus B19 infections are involved in the pathogenesis of some cases of Hashimoto’s thyroiditis.”
(A 2008 PubMed Research study)
All I know is that my immune system got crazy confused and severely compromised. The virus was able to take residence and set up home and in this (weakened) state I was further vulnerable to every other infection and potential pathogen which came my way. I was living in a body which could barely tread water. I certainly did feel as though I was drowning back in the worse days.
[line]
So just how do you even begin to find your way out of this complex maze? How do you start to unravel 19 years and put the pieces back together?
You do with Courage, Strength, Intelligence and Tenacity.
And above all else you do it with Faith, Spirit and Belief.
Recovery and healing from Autoimmune Disease begins with yourself. You need to find the root cause and the initial triggers. You will need to become your own best Doctor and this will be a full time (and unpaid) position. It takes a very long time and I admit that I am very much still a work in progress myself.
*All of the above are ongoing and even now there are areas which I need to work upon – mostly around forgiving myself which was a huge revelation as I wrote this article.
[line]
Healing and Recovery from Autoimmune Disease and Infections and Bugs is a unique and individual path. There have been many humble lessons I have learnt along the way and the most valuable of all is that whilst THIS is certainly my story and I share it openly with you, I AM NOT MY STORY and I AM NOT MY DISEASE.
I am quite simply ME and always have been. I will grow and evolve but that can never change.
Deep down beneath all the layers I am a soul which is perfect regardless.
I find comfort in this knowing.
[line]
*Update May 2015 – It is looking like Lyme Disease and Co-Infections may also be part of the bigger picture and root cause. I shall carry on unravelling as I go ….
**Update March 2016 – I am still very much in the murky midst of this cruel illness and life is very limited and restricted. I still am unwell every single day and barely leave the house. The Lyme Disease picture is soooo much bigger and scarier than I could ever have comprehended. I admit to feeling massive fear and other mood issues of late, and very much want to start seeing some improvement.
As one of the thousands of hobby gardeners I put my arthritis type pains and stiffness down to the hours I spend working in the garden. That was until I became seriously ill and barely able to get out of bed with severe joint pain in my hips and shoulders which eventually affected just about every joint in my body over time. I also struggled with weakness in my upper arms and upper legs, swollen lymph nodes, synovial thickening in wrists and ankles, sinus problems, swallowing problems, bladder weakness, gall bladder squeezing, facial tingling and twitching, difficulty sleeping, restless legs, unrefreshed sleep and fatigue.
Over 4 years I saw 5 doctors and 3 Rheumatologists, I was retired early from the Civil Service on ill health grounds and as my symptoms progressed I was diagnosed with Fibromyalgia, ME/CFS, Musculoskeletal Disease, Poly myalgia Rheumatica and then a chance course of antibiotics improved my symptoms and led my GP to suspect a bacterial infection – Lyme Disease. My records showed a history of bites, rashes, summer flu and migrating arthralgias, untreated by the locum doctor I had seen.
Although I ‘knew’ about Lyme Disease I had never once in my many years gardening, reading about gardens and watching gardening programs heard that Lyme Disease could be contracted here in the UK, I thought it was a disease exclusive to USA.
My tick bites were most probably from walking the dog in the woods across the road from my home, I have 3 other neighbours who have been diagnosed with Lyme Disease infected by ticks probably in their gardens which border onto the same mixed woodland.
I was fortunate in having an open minded GP who eventually considered Lyme Disease as a differential diagnosis and was prepared to treat me on longer courses of antibiotics as I continued to recover.
In the early stages of my diagnosis, one renown Rheumatologist in London wrote to my GP that I had Lyme neurosis from reading too much information on the internet – at the time I did not have access to the internet and it was my GP that suspected I had Lyme not me, thankfully his letter was ignored. How many more patients has he dismissed so glibly with his ineptitude?
It has taken several years of a variety of antibiotics to recover my health but I still very slowly relapse when antibiotics stop and respond quickly to further courses of antibiotics. I am not in a position to afford to consult with some of the world authorities on treating Lyme disease, but I recognise that I have been fortunate to have been treated and made such a miraculous recovery.
More details of my story are on my blog in the right hand column as well as a video of my Lyme Disease story
http://lookingatlyme.blogspot.co.uk/2016/02/my-lyme-disease-story-joanne-drayson.html
I was interviewed for a BBC article – http://www.bbc.co.uk/news/health-22468181
I featured in the publicity surrounding the launch of The Big Tick Project
http://www.mypetonline.co.uk/news-and-features/news/chris-packham-launches-big-tick-project-here-thursday
The most important lesson I have learned is to be as well informed as you can on the science that is emerging about Lyme Disease and other tick infections because the level of doctor knowledge is inadequate about these complex diseases. You live in your body and so you need to be your own best advocate for what helps you.
I am a shadow of my former self, desperately clinging to the edge of a life and achieving that only through the support of my husband. I’ve had three CDC positive western blot tests each six months apart and a positive MELISSA test six months later, all during continuous rotating antibiotic treatment. I took a 9 month break and recently restarted, this time Pulsing. An EMG showed patchy neuropathy and delayed motor response. My symptoms flare and include joint paints, muscle pains, fatigue – oh yes the fatigue – it’s not an absence of energy but a positive presence of oppressive exhaustion, recently I’ve developed tremors. It’s hard to cope. I get depressed that I cannot do the things I want to do, or cannot cope with doing things I need to do. I am a shadow of my former self. I had a successful career, was an active sportswoman and started my own business. That’s all gone now.
I suspected Lyme disease after years of debilitating headaches, ringing in my ears, light sensitivity, stiff neck, sore joints, flu like symptoms and chronic fatigue. I have a number of rare conditions that the symptoms were attributed to but I felt strongly that I was missing something. I had a test on my CSF during a lumbar puncture in 2013 that turned out negative. I tested again in 2015 with Armin Labs and was positive for Lyme with four co-infections. My GP ordered the UK standard test which was negative. He could not use the results from Armin Labs to order IV antibiotics. I suspect I was infected in Pennsylvania, US in 2011 but can not be sure. I did not have any classic symptoms. I take steroids for Addison’s Disease and they suppress rash and fevers.
My GP ordered 16 weeks of oral doxycycline. I do not feel any better and am 12 weeks into treatment. I’ve also spent thousands of pounds on natural remedies and naturopathic consults.
I have four children and most days am too exhausted to do more than get them off to school. I can only drive familiar areas because I quickly become confused and have anxiety attacks and dizziness.
We are expats from the USA and frequently travel. Lyme disease has taken my enjoyment of life. I can’t handle noise, crowds, movement of cars, etc. I take so many medications to alleviate symptoms and supplements to fill the nutritional void that it’s difficult to travel. I also have a terrible immune system and frequently have autoimmune response. When one of my children bring a cold home I get the cold then I get sick again while my body attacks itself in response to the cold. I suffer from autoimmune encephalitis which is triggered by the Lyme disease. It feels as horrid as it sounds. The pain, depression and isolation is crushing my will to live.
It places such a strain on my family as my children, ages 7-15, do not have their Mum available to them. My husband often plays the role of Dad, Mum and caretaker. It creates guilt on my part and stress on theirs.
Before this disease I was a very active and athletic mom. Now I am forgetting things, having difficulty speaking, losing fine motor skills and suffering fatigue and pain.
1991 I lived on Long Island- Shirley, New York across the street from a State park well known for inhabiting a lot of deer. I had a 1/2 an acre of land and was an avid gardener. I found a tiny deer tick on my stomach. I took the tick and went to the doctor to get checked out. I never had a rash or a bull eyes rash where I was bitten. When I went to the Doctor, I was told ” I have good news and I have bad news. The good news is, Congratulations you are 6 weeks pregnant. The bad news is you have Lyme Disease. Take these antibiotic’s for 30 days and you will be fine. That was the last time I thought about Lyme Disease.
However, in 2010, I was refinishing a piece of furniture outside and I was having a very difficult time. My body ached no matter what position I sat in to stain the furniture. It was very odd. I was sleeping for hours on end. Everyday after work, early to bed every night. The more I slept the more tired I was. In my late 40’s, I remember standing at the kitchen sink thinking, is this what happens when you get old? I was having trouble thinking, I felt like I was outside of myself, like I was not real. I was feeling and thinking my mind was going a little crazy-so much so I feared telling anyone for fear of them thinking I was crazy. Through the years I had had the doctor check me for arthritis because my grandmother had it and I was having trouble opening cans and using my hands like I used to. After a few blood tests, the test results for arthritis always came back negative. However, I was told by I did have Hep C, but, I was only a carrier. Wow, I had a tattoo and never did drugs let alone needle drugs. Well in this time frame I asked the doctor, can you please check me again for arthritis also I had been having sleep apnea. My fiancé had passed away tragically in 2009 and I thought due to my lack of sleep and grieving my body was not sleeping right. And, my vision had gotten really blurry with floaters. I thought that too was due to grieving not to mention my menstrual cycle had been going haywire- lasting sometimes 3 weeks in a row .. My OBGYN said no, you are not in your changes but we can give you an operation to stop the bleeding temporarily. I refused surgery- I chose to wait it out.
At the end of 2010, the companyI worked for sent out a new wellness health program. Stating that who ever participates would get a $200.00 bonus to do so. I signed on and went to my doctor for a wellness physical. At that time I told him of my body aches and problems using my hands like I used to. And, sitting there, it dawned on my that I was bitten by a dog tick the week prior and thought nothing of it until then. I said “I was bitten by a dog tick last week and I had lyme disease way back in 1991- would you test me for Lyme Disease as well as the normal blood work you order? He did and my follow up showed that YES- I had lyme disease. He ordered the Western Blot. At my follow up, the doctor looked up Lyme disease or rather chronic lyme because I said I had it in 1991. However when he looked it up on his computer he said the computer stated ,,there is no such thing as Chronic Lyme Disease. But, here my test results said I still had it. HAHAHA. He then sent me to a neurologists for the numbness I had on my left side and sent me to an infectious disease specialist.
The infectious disease specialist was very familiar with Lyme. And, I remember him telling me a story about a very intelligent woman that got Lyme and who could not function anymore. But, once she was put on Rocephin antibiotic there was a lot of improvement in here thinking. This doctor immediately got me set up with a hospital so that I could get a 28 day treatment of Rocephin to help me with my lyme. A pic line ordered and 5mg a day of Rocephin for 28 days-which is the only approved treatment the CDC allowed me to get. There was some improvement after 28 days but I remember thinking or rather crying at the thought of going off of the pic line/antibotics because it made me that much better. And, I feared going off of the treatment and never getting my mind and body back to normal again, completely.
During treatment, I got worse before I got better. I was stuttering and not just having night sweats but extreme day sweats as well. I was having difficulty remember my customers that I needed to remember in order to do my job. I was exhausted daily regardless of how much I slept. And, after 15 years with my company, I was laid off. The reason, my position was eliminated. I was making more money then I ever had with the company.. but the truth was I was no longer myself. It took all the energy I had to function, Let alone to work, smile and sell and remember things as well as I had to. This stress creaed More shock to my body and actual disbelief that I no longer had a job. I wondered how I was going to survive not only mentally, physically but now financially as well. I raised all 3 of my children alone, with a mortgage and a good job .. Now I was practically disabled mentally and physically ..how was I going to find a new job in the condition my body had become. I did find one, but it did not last even 6 months because I could not hide how slow, and unenergetic I had become. Thankfully, I was given a very nice compensation package from my former job and I went to a Natural Integrative Doctor who was familiar with lyme. Again, I got worse before feeling any better and had to go off the medicine in order to look for work again-the money was dwindling.
Currently, I have been at my new job for the last 3 months and I am struggling to make it. It is a sales position that is commission ONLY. – I am head of household and will not survive in a basic $12.00 an hour job if I want to pay my mortgage and pay my minimal bills. However, my mind,, my energy, and my body just wants to sit all day and daze outside the window. I am using every single ounce of my energy to do what I can to work. There is NO SOCIAL LIFE to speak of. And not because I do not have the time but because I use ALL my spare time gathering the energy and rest to be able to simple get to work. I still get extreme sweating during the day. When I sit with my customers.. the slightest anxiety or tension creates such extreme sweating that my customers wonder WHAT THE HELL IS WRONG WITH ME???? I wonder myself and pray thru my sweating that I can make a sale and at least make it thru that appointment and another day just to pay my bills. I live in the present literally, minute by minute, in pray that I can make it just one more day..just one more hour..just one more hour…before I am found out or found dead from exhaustion just trying to simply live like a normal person.
My new insurance will kick in when I make some money. (commission only) At that time, the infectious disease doctor told me he can now put me on another round of 28 day pic line IV- because the CDC said that enough time has lapsed since the last IV I was on…………….
I want to work……. but I may be on disability due to no fault of my own sooner then later. There is no Cure here. and I am not sure how long I will last the way I am going.
From New York moved to Florida in 1998: I paid cash for the Lyme treatment at the Natural and Integrative doctors office.. my career has sunk.. I am now just a minimal paid worker barely scrapping by …no one cares… I worked my entire life and got a bug bite that the AMERICAN health system officials are too l lazy and unconcerned to care about. My mind is back, thank god for a book the Integrative doctor and I followed..however the expense is too much for me to continue treatment… I am forced to wait ..yet another 2 years before I can legally get anther IV treatment paid by my insurance …or pay cash on top of the insurance premium I already pay for that is unable to treat fully as needed…. yet I am far from back to normal
As a child in 1965, I lived in Singapore (my father was in the RAF) and we were put in furnished accommodation. We also took over two dogs who were covered in ticks. My parent nursed the dogs back to health, but I got bitten on the backs of my thighs. We eventually worked out that the previous owners of the dogs had allowed them to sleep on the settee and beds, and ticks had got into the mattresses. I was being bitten every day for weeks, and received over a hundred bites. I was diagnosed with tick fever (it wasn’t called Lyme disease until 1975.) I don’t recall being given any treatment. Since then, I have always suffered from obscure symptoms – namely fatigue, muscle weakness and aches, sore throat, dizziness, brainfog, tinnitus, chemical sensitivities and digestive disturbances to name but a few. I suspected that I may have had Lyme disease some years ago, and was given a blood test which, of course, came back negative. My symptoms have got worse and worse over the years, and I now have lots of new symptoms. I was diagnosed with fibromyalgia, ME, and severe spinal degeneration. Over the years, I have been told by doctors to ‘have a baby to take your mind off it’, ‘you’re ill because you’re fat’, ‘it’s because you’re depressed’, etc. I have given up going to medics because they just fob me off. I pushed and struggled my way through life, serving 28 years as a police officer. There were times when I was on my knees, but I kept going. I can’t ‘keep going’ now. I had to retire early from my job, and I spend my days resting. I can’t clean my house anymore, I can’t do my garden anymore. The thought of spending the rest of my life like this is too much to bear. I can’t take painkillers because I react so badly to medication. I PRAY that a reliable test will be found soon, and that doctors remove their blinkers and stop denying the existence of long term, chronic Lyme disease.
I was bitten by a Dear tick just over 7 years ago. I woke up with severe pain at the back of my knee, it felt like something was ripping my varicose vain apart. For 2 days I couldn’t walk I just wanted to scream, I knew deep down that something was seriously wrong. By the third day I felt movement again, by this time I was on the floor screaming for help. My son rushed me to A&E, by this time I was insane screaming get it out. After lying in the hospital bed for an hour things started to calm down a bit, the Doctor was scratching his head after I tried to tell him I had been bitten, I had no idea what had bitten me, and he decided to do a full blood count, and a lung X-ray. He didn’t bother to check the back of my leg, he checked my foot and the sides of my leg, being more concerned about clots. My blood came back with borderline clotting, I was given an injection and kept in for the night. I told the doctor to check for bite marks but he didn’t want to go down this route, as he was convinced it was a clot. I went home the next day feeling so unwell, the fifth day after my tick bite a bulls eye rash appeared, it was small and very sore. I was treated for ringworm, and visited my GP every 2 weeks trying to get him to recognise that I may have Lyme disease, as I found the tick embedded in the door frame a few days after I was bitten. 7 years on nothing has changed, I’ve had a NHS test done twice which came back negative, yet Armin tests were positive for co infections. It’s horrible to be shouted at, drugged up by psychiatrists, told we think you have ME then told you don’t, you have fibromyalgia, and your anxiety is getting the better of you! Every night I prayed that I wouldn’t wake up the next morning, and hoped my sons would remember me when I was well. I guess my biggest fear was having my gallbladder removed, I lay on the bed sweating and panic attacks thinking I wasn’t going to pull through, as all my symptoms had gotten worse and though I was at deaths door. I told the Doctor if my heart stops just let me go! He asked me why I replied do you know what Lyme disease feels like? He held me by the hand and everything went black. I have never told any of my family members of the fear this disease puts you through.
My early symptoms were flu like. Complete exhaustion, eyes affected by bright lights, ears affected by noise almost magnified sounds.
Progressing to cyclic flu every month, difficulty walking, twitching muscles, neck stiffness, stabbing pains in head and stomach. Twitching muscles, leg pain. Nausea.
This progressing onto feeling like an army of ants running up and down my legs, electric shock type feeling in legs, tingling and vibrating. I was house bound and most days bed bound for 16months.
I watched the ‘This morning programme with John Caudwell’ in November last year. 2015 And I realised that my symptoms could have been Lyme disease. I also had remembered after watching the programme and seeing how small ticks actually were that I had noticed all these months ago I had a black flea like thing on top of my leg. I didn’t realise it had been a tick! As I was not aware of any rash. I approached my GP and got a negative Lyme test. I was told to accept I did not have Lyme and the test was very accurate. However with my research I knew it wasn’t the case. I went back to GP and got a clinical diagnosis and was prescribed a month Doxycycline. Unfortunately although initially feeling better this did not last. I had to seek out private treatment. I received a positive Lyme disease test when sending my blood to Germany and USA for active lyme infection. I have been paying for private treatment since. Consisting of oral antibiotics and IV antibiotics.
This has had a huge inpact on me and my family. I had to give up work as was too ill to. I live in Scotland and had to leave my kids at home with my parents and husbands parents while I got IV therapy in England. This has put a huge emmotional strain and financial burden on all of us.
My kids are 10years and 8years and I had to leave them to get better in the chance to not be in a wheelchair ( as this was where I was heading fast). It was awful the boys and my husband and I were very upset about the whole ordeal!
In May 2008, I took my dogs for a walk in Felley Woods, Nottinghamshire. As I had with me all six that I had at that time, I took them off the unbeaten path, down what I realised too late, were deer paths. The woods have an established herd of deer and I was blissfully unaware of them being the main carriers of ticks and even less aware of the possibility of catching Lyme Disease. At the end of our walk, as I returned to the car, I recall having to flick off a small, reddish brown insect that was attached to the side of my hand. I thought no more of it but within a few days I started to develop a round, pink rash. Then is developed a red outer ring, with a ring of white between that and the pink centre. In a few more days, this enlarged until if covered half of my hand, about 4 – 5 inches in diameter, wrapped around the outer side of my left hand and wrist! The raised edge got scratched by the animals I handled and became infected so I showed it to the doctor and he gave me a weeks worth of amoxycillin but it took about ten weeks to finally go. In the meantime, I started to feel over tired, no energy and was falling asleep for no reason at all! My neck had become stiff and I started to ache all over. When I drove, my vision would blur in and out and I would see ‘floaters’ so would have to pull in at the side of the road and rest with my eyes closed until it went.
Eventually I went to see my doctor again and after noting all my symptoms, he asked me to return in another few months, to see if I still had them! Neither of us thought about the rash having appeared just prior to the symptoms started – he had put the rash down to eczema, which I had never had before nor have I had since. Upon my return to see him, he asked me to have blood tests, just the usual, basic ones, to cancel out anything obvious. When they proved to be clear, I returned and he asked me a lot of questions via a tick box list and pronounced that I had ‘CFS’, Chronic Fatigue Syndrome. Then that was it. No more help, no more support, just a useless 10 week course, which I managed to complete 9 weeks of, in pacing, diet and exercise etc, which was set up by the local NHS for new CFS sufferers! It was held in the morning, 9 1/2 miles away in the city, through heavy morning traffic. I failed to attend the last week due to having not slept the night before and they wrote a snotty letter to my GP saying that they could not assess my progress as I had not completed the course!!! Since then, only painkillers and anti convulsants to combat some of the pain and neurological symptoms. CFS is a dustbin diagnosis and believe me, you are consigned to a dustbin when you are dumped with it!
Life as it was, was over. No more working, walking, horse riding, outdoor pursuits or training with my dogs. Friends disappeared, family looked puzzled and failed to understand and in due course, I was on my own, with luckily the support and love of my husband and my two daughters plus a handful of friends who have stuck by me. I guess I am luckier than many sufferers, who end up with nothing and no-one. When the understandable depression that accompanies such a disease rears its head, I remind myself of that!
Since May 2008 my health has become worse and worse, affecting every thing that I do. I have tried private doctors and a variety of suggested supplements and still take what I know is beneficial to me. I refuse point blank to put us into debt by seeking proper diagnosis and treatment abroad. There is no guaranteed cure anyway plus the NHS will not accept a private positive diagnosis so to be honest, the money we do have is put to better use by making my life as comfortable and able as possible. I feel downright angry, that I and many, many others, have been dumped on by the NHS and left to rot with misdiagnosis! MY GP that I have now is a lovely man, but I never mention my misdiagnosis to him, as then he would have to toe the NHS line and then we might not get on so well!
I cannot write anymore, my hands are burning now and too tired. If you wish to read more, here is my blog, started in May 2011, after I had had this for 3 years. http://acrobatichamster.blogspot.co.uk/search?updated-min=2011-01-01T00:00:00Z&updated-max=2012-01-01T00:00:00Z&max-results=6
I consider myself to be a fairly private person overall. However, I’ve decided to take a leap of faith and share my personal life experiences and struggles as a way to help support my own spiritual, emotional and physical healing journey; and connect with others on a deeper level so that they too can feel supported on their own healing journey.
This is… Lessons In Love and Lyme http://drjess.me/
Good Afternoon Dr. Jess
I was sent a request to respond, although I already have in April 2016. So… I am going to do an update.
I told my Lyme Doc… I don’t give up …I give in. I can no longer try to work and attack this lyme disease as needed in order to get better. My body said NO, I left the new sales job ..where I sweat profusely while trying to make a sale. Humiliating, exhausting and I was unable to hide my symptoms. I applied for Social Security Disability. My ego lost … and I gave in to taking care of me and my health regardless of what money is needed to run my household. I visualize homelessness but I pray if I do become homeless, at least, I know I tried to get better. And, if I get better… pray that I will be able to get a job that pays enough to help me stand on my own again. With that said… I did go back to my lyme doctor while I was working and a ton of lab tests were ordered. The results …the lyme had come back with a vengeance, not only that but I also have Epstein Barr Virus and Microplasma! OMG… relief initially but as I sat listening to another round of treatments… silent tears just began to roll. I was just told I was beautiful by friends the day before. This is not beautiful… what did I do to get such a controversial.. de- habilitating –humiliating disease? ONe without a concrete cure to boot! I worked hard all my life …self made…responsible …am I going to be able to get disability to pay for all the treatment I need? Who is going to care for me and oversee how I am doing while I am home alone .. herxing or who knows what while under treatment? I give. I give it all to god…and for some reason he wants me to sit down and just go with this flow…maybe I have worked to hard in my life and this is some kind of break… Money?? HA! So I spend my retirement money………. I may get better.. I am shaking my head because I can not believe I have been chosen to deal with a disease that is woven with so many intricate and untamable weaves. And, reality is …I may not get better… this disease is under so much controversy… I can only PRAY that I am on the part of the train that will see a brighter light sooner then later. So…I started Doxy 1x day which will increase to 2x day and Acyclovir 3xday also fluconazole 2 x a week… and will be starting an IV Rocephin snext week 3 times a week. Thank GOD I always paid my bills, the doctor visit was 195.00 …the meds 119… the IV will be 300 and higher as doses increase. I have no choice, after working my entire life, but to charge my treatments and hopefully be able to pay for them “whenever” treatment might be done, and, I get better. Then again,,,,,, if I don’t get better, because I run out of money . or the CDC stops treatments, I will not only be in debt that I can not pay, but I will be at the brink of homelessness and who knows….. death? Right now,, by the grace of god… I have renewed hope seeing more positive news and movement towards treatments to help and assist us to live normal again. I pray for all of us that are going through this and I also pray with thankfulness to all that are working towards helping us. God Bless!!
I’m 63, I was born with Lyme, as was my 30 year old son. You hear a lot of people say there’s no evidence that congenital Lyme exists. That’s wrong. Dr Alan Macdonald published his Gestational Lyme study and review of other studies in 1989. There is no doubt that Borrelia leaps across the placenta. My mother had an undiagnosed illness in 1950 and lost a pregnancy at 6 months the following year, then another year later she had me, apparently normal, but I never slept, never stopped crying and spent my childhood thinking an awful lot of nasty sensations, pains and nausea were normal. My parents had been ‘wild’ campers in the days when tents had no ground sheets. I had 2 normal older brothers.
My idiosyncratic body function got worse from the age of 11. I had lots of allergies. I was so fed up with feeling sick every morning of my life for as long as I could remember that I took myself to a GP aged 12. He told my parents I may be pregnant. My relationship with GPs began as it was destined to continue. I became a nurse. I accumulated lots of diagnoses : recurrent urinary tract infection (despite no infection ever being found), migraine, irritable bowel, oesophageal spasm, supraventricular tachycardias, vasomotor rhinitis, blah blah. I became a physiologist. I realised I had an illness which lay behind all these dysfunctions, I believed it was a hidden infection by some undiscovered pathogen, 4 months on tetracycline for the bladder issues had made me feel generally better.
I asked the professor whose research slave I was, to allow me to study this illness I had encountered in a large group we’d studied, not confessing I had this myself. I was told ‘ sounds like silly bitch syndrome to me.’
I had come to half believe that I was a silly bitch.
Then I had a son. God forgive me for inflicting life in this way when I was so damaged. He was born screaming and colicky and sleepless just as I’d been. He never slept. But he seemed basically normal and I fooled myself that all I’d given hime was a sleep disorder.
When he was 11 and I was 43 we were both becoming more ill, both got labelled with fibromyalgia. No investigations were done except routine bloods which always showed a chronic low grade inflammatory state and this was ignored. My son had swollen painful lymphnodes often, from the age of 5. And was never quite well.
I kept requesting investigation but all that got me was a reputation for being a pushy mother and silly bitch.
My son got more ill, had to drop out of school. Started getting heart problems. Had basic investigations which they said showed no abnormality. When I inspected the notes I found they’d lied and my son had significant abnormalities in his heart.
But a pain management consultant had stated that my problem was aberrant health beliefs and somatic hyperviligance, I was a hypochondriac projecting my foolishness onto my son. Whom he’d never met. Once that statement was made it grew and prejudiced every doctor either of us ever met. Until one day n 2010 a locum GP said we may have Lyme. Since then it’s been one long slog of jumping through hoops for consultants who say’I don’t know anything about Lyme but we don’t need to consider it here’. We’ve each collected even more diagnoses, all describing just some of the groups of symptoms, none of any known cause. I offer them the one answer which would explain it all and they snort in derision. They refuse to read the science I provide to support the diagnosis. We found one open minded GP who boned up on Lyme, agreed with the diagnosis and began treatment. She’s now left and we’ve been blacklisted. We have no real medical support at all.
My son has documented life threatening cardiovascular problems including a rare cardioinhibitory reflex. He could die from this and there’s no treatment. He also has central sleep apnoea, when he manages to get to sleep he stops breathing, he wakes gasping and panicked. This happens every night. No body system is unaffected.
I’m crippled with my symptoms too and I’m his carer.
We saved up and sent bloods to Germany. And Lo! we both have Lyme, he has anaplasmosis, Bartonella, we both have Coxsackie virus and C. pneumoniae.
We also have a Russian GP who refuses to accept the results because their foreign! And last week we were sent like lambs to the slaughter into the clutches of a Lyme denialist infectious diseases monster at the UCLH School of Tropical Diseases. She spouted nonsense 35 years out of date and said if we tested positive at Porton PHE lab (ha-bloody-ha) she’d offer us 3 weeks of low dose doxycycline. She does not believe in chronic Lyme.
Welcome to 21st century British medicine.
May God help us all.