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Tracy Winchester raised £330 from 15 supporters

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Closed 30/11/2021

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£330
raised of £7,000 target by 15 supporters

    Weʼve raised £330 to fund testing and treatment for Lyme Disease and Co-infections

    Funded on Tuesday, 30th November 2021

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    Story

    Hello all. To say I feel uncomfortable having to do this is an understatement...but I feel like I need to swallow my pride and do this to help me of course, but also to enable me to continue caring for my family and assisting members of the community in my voluntary work as well as assisting people through my work as an Occupational Therapist.

    So, perhaps a bit about me to start with. I am in my early 40s, I'm married to Russ and I have two lovely children. Life is a little complicated most of the time, however as our family have their quirks! 😉 Both of my children have special educational needs that are rather complex, or perhaps I should say that mainstream education is not for them! I was already working part-time as an independent Occupational Therapist, specialising in mental health and brain injury so that I was available to support my children as they are not settled in school or attending full-time. I also provide support and care to my parents who live locally to me, particularly to my Father who has various medical conditions.

    I chair North Worcestershire Autism Parents Support Group, bringing together and supporting local parent-carers and appropriate professionals. This sits alongside my efforts as joint co-ordinator of SEND National Crisis Worcestershire, campaigning for special educational needs locally and nationally as part of the SEND National Crisis campaign.

    In short, my family, my job and assisting other parent-carers and SEND families mean the world to me but sadly, right now, because of being unwell I cannot do any of these anywhere near how I used to. The meaning and purpose in my life is disappearing.

    So, my story goes like this. In March 2020, just before Covid-19 took hold properly in the UK, I discovered a rash on my leg. I was rushing around with various appointments with the kids as I often would but it got my attention because it itched like crazy! That was on Wednesday. On the Saturday, I woke up to a changed rash that was very distinctive, and I remembered from reading about when our family took ownership of my son's Autism Assistance Dog, as it's something that can affect dogs. I had a very typical 'bulls-eye' rash, which I know now as a Erythema Migrans (EM) rash. This rash in itself, according to the NICE guidelines, is diagnostic in itself as Lyme Disease.

    With the nation panicking about Covid-19 and cases rapidly rising, NHS 111 was incredibly oversubscribed and I was told it would be hours before I got a call back. I knew that time was of the essence with treatment for it to be effective. I ended up accessing a reputable online GP service privately via a local pharmacy. They immediately prescribed 21 days of Doxycycline, as per NICE guidelines. During treatment, as I have now come to understand is often the case, I became much more unwell, with severe fatigue, flu-like symptoms, joint pain, aching, neck pain and severe migraines. This continued throughout the course of treatment so I consulted with my own GP via telephone as all consultations had become remote due to the pandemic. The GP was not completely sure what to do but due to possible neurological symptoms, they prescribed further Doxycycline at a higher dose, again for 21 days. Over this course symptoms altered but did not completely go. Some time passed and I had developed a chronically sore throat, for about 6 weeks. I was then prescribed Amoxicillin, and referred to ENT to check my throat on fast track. A couple of weeks later I was given the "all-clear" from ENT but they related this still to be likely Lyme Disease.

    As time continued, I just became more and more unwell. The fatigue became more and more impacting on my life, starting as a sporadic thing to becoming a daily feature of different degrees. After suffering previously with chronic migraine but then finding medication that significantly reduced them, they were now out of control again, with 20-25 days per month with migraine. I was sleeping like a teenager again but it was never enough. Lockdown and reduced expectations were a happy coincidence in some respects as I certainly realised how affected I was when life started to get back to some normality and I was expected to perform my normal life tasks. Over the last 14 months, I have become more and more afflicted and feel like a shadow of my former self. My symptoms vary daily which makes life very unpredictable although I know that fatigue features every day. I also experience brain fog, joint pain (often all over, from legs, pelvis, fingers etc) and burning feelings, severe back pain, severe and frequent migraines, significant weight gain, dizziness and other vestibular symptoms, nausea, light and noise sensitivity, recurrent flu-like symptoms, feeling flushed, crazy low body temperature which is usually around 35.2 degrees centigrade, breathing difficulties, allergic symptoms such as rashes, gastro-intestinal issues.

    I know from speaking to others that without treatment things will only worsen too. Ultimately, these conditions can prove fatal as they can cause heart issues, strokes and a whole host of other issues. I don't want to let it get to that, the point of no return. I want my life back and to be the mum and carer my family needs. Unfortunately, that path is not straightforward. I have persistently tried to access help from the NHS but I am consistently denied even the recognition that what I have now is still related to Tick-borne infections. Sadly, the UK is not at forefront in this area and although there are striking similarities to 'Long Covid', Tick-borne infections such as Lyme Disease (Borrelia) and Bartonella which I have now been clinically diagnosed with, from an international Tick-borne infection specialist Doctor, are not getting the recognition they equally deserve. I need to access testing and treatment privately that will likely involve long term combination antibiotics and antimicrobial medications alongside support for my immune system to cope with the intensive treatment. This will inevitably cost a lot but will also in the short term likely make me more unwell.

    We have had to spend thousands of pounds already to get the support our children need for their special educational needs as they have been let down by the services and authorities that should be there to help them. Unfortunately, this fight and expenditure continues and therefore every spare penny we have had has gone into funds for the legal bills, assessments etc. Our children are and will always be the priority so unfortunately when it comes to finding the money to pursue testing and treatment for me, we find we are lacking to say the least. We have exhausted all reserves.

    I have had an estimate regarding costs I'm likely to incur so that is why I am seeking to raise the target I have set, however, if there is any outstanding when I am hopefully treated and better, I will donate the remaining amount towards the research that is so desperately needed in Tick-borne infections; valid and reliable testing and treatment. Hopefully this research and evidence will force the NHS and NICE guidelines to reflect the reality of the situation and offer hope of treatment to the many of us struggling.

    As a final thought, it is Lyme Disease Awareness Month, and I urge you to educate yourself about Ticks and the risk of Tick-borne infections like Lyme (Borrelia) and Bartonella. They can be truly devastating and they are largely preventable by using certain tick-bite prevention strategies. For further information see https://lymediseaseuk.com/.

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    Tracy Winchester

    Updates appear here

      3 years ago

      Tracy Winchester started crowdfunding

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      Page last updated on: 7/14/2021 20.12

      Supporters

      15

      • Andrea Matthews

        Andrea Matthews

        Jul 14, 2021

        Oh Tracy, this sounds so awful for you. I hope you can raise the money that you need and feel better soon. You do so much to support other people xx

        £50.00

      • Michelle, David, Joe

        Michelle, David, Joe

        Jun 7, 2021

        £20.00

      • Katie

        Katie

        Jun 2, 2021

        £20.00

      • Emily Woolley

        Emily Woolley

        May 29, 2021

        £20.00

      • Kate, Tom, May & Rowan

        Kate, Tom, May & Rowan

        May 29, 2021

        Tracy, I’m so sorry to hear that you’ve been suffering, and continue to suffer, so much. Thinking about you and sending you lots of love. X

        £20.00

      • Paul Banner

        Paul Banner

        May 28, 2021

        £10.00

      • John W and family

        John W and family

        May 28, 2021

        £20.00

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      Tracy Winchester

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