Lyme Disease Treatment Required - Laura and Martin

Please help me raise the funds to help my daughter Laura and her partner Martin access the treatment that they desperately need. They both suffer with Lyme disease and without specialist medical care that is not available on the NHS their health will continue to deteriorate.

In 2013 after many years of ill health Laura finally received a diagnosis of late-stage and chronic Lyme disease. The following year her partner Martin also received a diagnosis of Lyme disease after his health started to deteriorate (Lyme Disease diagnosis verified by laboratories in the U.S and Germany). This terrible condition has affected every aspect of their lives and I worry terribly about their future. No mother wants to see their child in pain every day and unable to take care of themselves. Lyme disease is a largely misunderstood condition and the NHS has so far not offered a proper acknowledgement of their condition, nor any supportive therapies. They have used their savings on antibiotic and herbal treatments through a private clinic in the UK but their health unfortunately remains extremely poor. My husband and I, along with Martin’s parents, have also helped fund their treatment and testing but without effective NHS treatment options we are now appealing for help as we can no longer afford this on our own. Laura and Martin are now living with myself and my husband as they are unable to live independently due to their ill health and financial situation.

What is Lyme Disease?

(The short answer is that) Lyme disease is a bacterial infection carried by ticks that is usually transmitted to humans via a bite. If it is caught quickly, i.e. within a couple of months, then a course of antibiotics is usually effective, however if it goes undiagnosed then it can become a chronic and debilitating condition.

More Lyme disease sufferers report a ‘fair to poor’ quality of life than those with MS or congestive heart failure (Ref. 1). This disease can cause heart and auto-immune problems that can kill (Laura is under investigation for auto-immune disorders as her blood results consistently show several raised markers), but a big killer with Lyme disease is suicide because of the severe effect the disease has on your life. Living with these symptoms and the negative attitudes towards Lyme (and associated diseases) by doctors and healthcare systems likely contributes to the increased suicide rate in Lyme sufferers. It is estimated that there are over 1,200 Lyme and associated diseases suicides per year in the United States alone (Ref. 2).

Their Story:

Laura was always such an energetic and enthusiastic girl, doing well in school and with sports. Now after many years of worsening health she is mostly housebound and unable to work due to this debilitating disease. Laura has had to give up work as well as a degree course that she was so passionate about. In addition to Lyme disease she has been diagnosed with TMJ disorder, PCOS, a large goitre on her thyroid, and is being investigated for endometriosis. Laura’s blood results show a consistent trend of raised auto-immune markers which are also currently under investigation. In short she is extremely poorly. This is Laura’s story, in her own words.

“My symptoms started when I was around 8yrs old (25yrs ago) with a stiff neck which caused me trouble getting to sleep at night. I also had stiff and painful knees; I told people around me and they said it was probably growing pains. I accepted the pains and got used to them because I didn’t know any different as a child. As time went on I started getting severe migraines every few weeks. I thought these were something people could ‘just get’. Then I started to get lots of discomfort in my muscles; sitting next to people in cars and wearing even slightly tight clothes became very uncomfortable for me. Around age 17 I developed TMJ (jaw joint) disorder. This was characterised by pain and stiffness in my jaw going round to the back of my head, into my temples and above my ears. My jaw joint painfully clicked out of place when I opened my mouth even just a little way. I was told by the doctors that this should go away naturally as I get older, but instead it got worse and worse with other symptoms coming in. I started waking up feeling like I had been punched in the face and hit by a car because I was so achey in my head, jaw, neck and my whole body. I started getting systemic symptoms such as a buzzing sensation from head to toe that made me feel like I had been drugged, nauseating headaches, a flu-like and infected feeling, numbness and pins and needles in my arms and legs. I was progressively getting worse with each symptom getting stronger. I had severe tinnitus, shortness of breath and a squeezing sensation in by chest. I started getting a vice-like grip feeling in the base of my skull where I could barely move my eyes otherwise I would be sick, and I did projectile vomit on many occasions because of this pain." 

"I started to become more aware of how systemic the symptoms were, by this stage at around 23yrs old I was crying each day before I got out of bed. I could barely wash myself and Martin had to help me. I was waking up in severe pain every day, continual joint pain specifically in my jaw and neck, feeling nauseous, dizzy, racing heart, crippling fatigue and I unfortunately pushed myself to work through this period taking constant pain killers as nobody around me was able to recognise what was going on; I was suffering too much and didn’t know what to do. I thought that it was me and that needed to just try harder. During this period I was on and off diagnosed with anaemia, PCOS, a goitre on my thyroid, and told by my doctor that I had symptoms of an auto-immune problem but they could not work out what it was.  Some things that I experienced progressively getting worse form 25yrs old onwards were my ability to concentrate, find words, remember things, and my general capacity to think sharply declining. I started a university course in Diet and Health but sadly due to my cognitive decline and worsening physical symptoms I realised I could no longer continue with it. I was having such severe flu-like symptoms that I was having auditory and visual hallucinations, fever and chills, vivid nightmares, and bouts of extended insomnia. I was also experiencing continual bloating and what I can only describe as tissue pain and inflammation throughout my body. I started getting blisters and rashes appear. Throughout this period I repeatedly saw NHS doctors but they were unable to give me a diagnosis or any help that relieved my symptoms."

"At the age of 28 I was desperately ill, not able to work, and my health was still deteriorating to the point where I was bed-bound and could not feed myself or get a drink of water. I was sleeping most of the day at this point and would often not wake up until 4pm, but still could not get up and about or help myself. In desperation I sought private medical advice and I was diagnosed with late-stage Lyme disease in 2013. I was initially placed on a course of intravenous antibiotics and other medications and supplements. The treatment initially made me feel quite a bit better. I then took oral antibiotics for several months but unfortunately due to the length of time I had had the infection my body could not handle the rate at which the Lyme bacteria were being killed off by the antibiotics. This process of the bacteria dying causes you to feel extremely unwell and this process is known as a ‘herx’ reaction, and is common in patients being treated for Lyme disease. As the bacteria had been in my body for so many years this reaction was extreme in me, ultimately resulting in me experiencing a psychosis which NHS psychiatrists recognised and treated me for. Although I picked up mentally after my initial treatment, and experienced some improvement in my physical symptoms, I have sadly not maintained an upward trend in my physical health. I tried to go back to part time work in 2016 but this shortly came to an end as I was still ill and going down hill again. My health began to decline quite quickly as I was doing far more than I was capable of, but I just wanted to try to regain independence and a normal life again.  Since stopping work my health has been consistently very poor again, and despite trying further courses of antibiotic and herbal treatment I can still barely function. My quality of life is so poor and my last hope is to go to a clinic in Germany which offers stem cell treatment which other Lyme sufferers have found to be very successful.”

Martin has always been a hard worker, driven and confident but Lyme disease has torn his life apart. After gradually reducing his hours at work he finally had to stop work last year, a crushing blow to his self esteem and to Laura and Martin’s prospect of independent living. He suffers daily with little to no energy and a complete absence of the wellbeing that he once enjoyed. Martin had been feeling run down and generally unwell in 2013 but his health declined following an operation to remove his appendix in 2014. It seems that Martin’s body was managing to fight his Lyme infection, but after his surgery (during which the doctors found his appendix had actually burst and gangrene had set it) he never fully recovered and his health has gradually deteriorated since. This is Martin’s story, in his own words.

“Following on from Laura’s story above, I had been looking after her more and more and by the time she had to leave university in 2012 she could hardly get out of bed. I was working full time and looking after Laura which put quite a strain on me. At that time we were living away from family and friends and had no support. In early 2013 I had appendicitis. I found out after surgery that my appendix had burst some time ago and had gone gangrenous. This had caused me to become quite unwell and I was in a lot of discomfort. After my surgery I just didn’t improve in my wellbeing and I began to experience symptoms which I initially put down to me being run down looking after Laura and working too hard. I became increasingly fatigued, and had joint and muscle pain, similar to Laura. I found that my thoughts were becoming jumbled, I felt light headed most of the time, my body felt like it was buzzing, and my heart was racing and I was nauseous. On a daily basis I would also experience chills and fevers and flu like symptoms. By early 2014 my health was continuing to deteriorate and work was becoming almost impossible. Although I could see that some of my symptoms matched those Laura was experiencing we had no idea that Lyme disease was transmissible from person to person. We later learned from a private doctor that was treating Laura that this was in fact possible, so I decided to get tested for Lyme disease too. My test result came back positive for Lyme disease. My results were a relief because I finally knew what was wrong with me, but they were also terrifying because I had seen the effect that the disease had had on Laura. I had to stop work shortly after this, putting Laura and I in a difficult position with bills to cover, adding stress which we just didn’t need. We had to move in with our parents for financial and physical support as we couldn’t cope on our own. As I started my antibiotic treatment I initially felt worse, and then I picked up a little which I found encouraging. In mid 2015 I was able to return to work. At that time Laura was experiencing a psychosis and I felt pressure to provide more support financially to make things easier for us. The strain of working was too much for me, and after initially reducing my hours I eventually had to stop work again as my symptoms had significantly worsened.  Despite trying antibiotic and herbal treatments again I have not been able to improve my health and I now find myself largely housebound, exhausted and in pain physically and mentally. To make sure I am pursuing the best course of action I have been re-tested privately for Lyme disease, as has Laura, and we have both come back positive again.”

“Thank you for taking the time to read this and for donating if you are able to, it truly means the world to us. This treatment will enable us to do normal every day things that most people enjoy. It will also mean an end to the pain that we suffer on a daily basis. We feel like prisoners in our own bodies and we just want the opportunity to ease our suffering and to be able to build a life together.”

The Treatment:

If they don’t receive the right treatment and support then unfortunately their health is only going to get worse. This means as a couple they will never be able to work due to their cognitive and physical impairments, and will be dependent on the state, family and friends for the foreseeable future. They will never be able to have a family, have any hobbies or passions, or even spend a day in comfort.

After years of self funded treatment, and huge financial support from family, their money has run out and as a result their treatment and recovery is in doubt. The donations will help fund their continued medical treatment and aftercare, and will help me to support Laura and Martin with various therapies that will aid their recovery. The treatment that they are undertaking has been successful for many Lyme sufferers and we believe wholeheartedly that Laura and Martin are on the right course, it’s just a lengthy and expensive process.

Please help me to raise the funds so that I can continue to support Laura and Martin in their treatment and give them the chance they deserve.

How Will The Money Be Used:

1. Continuing and new forms of private treatment for Lyme Disease provided by registered medical professionals.
2. Regular testing to monitor their health.
3. Associated transport costs and expenses to make their treatment possible.
4. Ongoing cost of medications and supplements.
5. Consultations with Lyme specialists.
6. Therapies such as counselling, massage, detoxification.
7. Dietary support.
8. Any other treatment opportunities and support that aid their recovery.

References:

Ref. 1 - https://www.lymedisease.org/wp-content/uploads/2015/04/lymedisease.org-patient-survey-20151.pdf 
Ref. 2 - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5481283/