Help Sophia Fight Lyme
I have set up this page hoping to get some help towards funding my Lyme Disease treatment overseas and ongoing treatment back here in the UK.
Because the NHS doesn’t recognise or fully understand the complexities of my chronic illness, I have no option but to travel abroad to get the expert knowledge and treatment I need to hopefully get me well again.
I have been ill for over 2 ½ years and have suffered with chronic pain for 8. Despite our very best efforts, pursuing every possible medical pathway and already spending £000’s on appointments, scans and tests, we have made very little headway here in the UK. And, as each month goes by, the disease continues to progress and I am getting sicker and weaker.
If I’m going to have any kind of future with a reasonable quality of life I need to act now to tackle this disease head on, with your help.
The story so far
I am 27 and have suffered with unexplained and increasing chronic neuropathic pain since my first year at uni (in 2008). Try to imagine burning, stabbing, cramping, and deep intense aching pain in your legs 24 hours a day, with sensitivity so extreme that often even a cotton sheet touching them can’t be tolerated. Walking just a few steps is painful, difficult and very restricted. When it flares up (when the pain is even greater and more unbearable) it's the kind of pain that most ‘normal’ people who don’t experience pain every day, would go to A&E for, thinking there was something drastically wrong with them. There is nothing that gives me any relief or respite.
Suddenly, in December 2014 I began to experience a lot of other debilitating symptoms like chronic fatigue, muscle aches, migraines, dizziness, sound and light sensitivity, a racing heartbeat, and memory and concentration problems. I can’t stand or sit up for very long without feeling dizzy or faint and spend most of my day lying down, resting my head. On a good day I look forward to getting out of the house for an hour or so but have to dose myself up with strong painkillers and rely on a wheelchair. I really miss my independence.
Despite many appointments, investigations and tests, nobody could tell me what was happening to my body. Specialists shook their heads and told me there was nothing they could do - I would just have to accept and live with it.
Getting tested for Lyme Disease
Thankfully, my pain consultant thought outside of the box and suggested a test for Lyme Disease. My first test came back positive – which was a shock but at least I knew what I was dealing with. However, a second test was described as ‘inconclusive’, meaning more doubt and disappointment.
“PUBLIC HEALTH ENGLAND ADMITS ONLY 10% OF UK LYME DISEASE VICTIMS GET DIAGNOSED BY THE NHS EACH YEAR.” Caudwell-lyme.net
Due to the controversy around the accuracy of Lyme Disease testing here in the UK, we decided to get tested privately through a well known German lab. This confirmed that not only do I have Lyme Disease but also several co-infections and viruses. The test also confirmed that my immune system is very suppressed – no wonder I feel so ill!
(I have also since been diagnosed with POTS (postural orthostatic tachycardia syndrome) which is often caused by Lyme and is an explanation for why I can’t stand for long.)
At last I could attribute my symptoms to a known condition and get help – or so I thought. Trying to get treatment for a disease that is misunderstood and often not even recognized by the medical profession here has been really tough and exhausting. We’ve gone as far as we can go and can’t waste any more time.
How Lyme Disease has affected me
My health is very poor. Contracting Lyme Disease and multiple chronic infections has left me almost totally debilitated and housebound. My immune system is severely compromised, my central nervous, autonomic and digestive systems have been severely affected and my neuropathic pain levels are very high.
I haven’t been able to work for over 2 years (I had to give up my job as a speech and language therapist), I have very little in the way of a social life and I have lost my independence.
Compare this to several years ago when I was fit and healthy, running 10K races, swimming 5 times a week and boxing! That’s very hard to imagine now.
My amazing Mum took 6 months off work to research everything there is to know about Lyme Disease and how to treat it.
After thoroughly weighing up all the options in terms of clinics/specialists abroad, we felt that the Stram Clinic in Albany, USA, would be able to help me (we have also found a clinic in Germany as a second option if necessary) and, thanks to funding received so far, travelled there at the end of last year. The journey was incredibly difficult as I’m so poorly, but I put myself through it because hopefully the end result will be worth it. With the love and support of my family and boyfriend I am determined to do everything to get well again.
The treatment and the costs
We don’t yet know for sure exactly what the treatment will be as every Lyme Disease sufferer can carry different co-infections and viruses and will react differently to different protocols. These are some of the options:
- IV antibiotics
- Oral antibiotics
- IV vitamin infusions
- Detoxification methods
- High quality supplements
- Holistic therapies
I have a lot of health issues that need to be addressed in the right order and that’s going to take time – we are estimating up to 2 years.
This may mean more than one trip to the USA and some Skype appointments plus a range of tests, scans and prescriptions along the way. All of which are going to be privately funded.
There will be travel & accommodation costs, consultations, blood testing, healing therapies and supplements and medicines to pay for. Ongoing treatment in the UK will be slightly different and may involve expensive immune boosting treatments that we are currently investigating. We've been as precise as we can with the fundraising figure - it’s hard to be exact and our target amount may change slightly as we go along and learn more – we will keep it updated as best we can.
Recovery from this awful disease is definitely possible and I am hopeful that I can slowly regain my life back. I know that it’s going to be a very long road and a tough process both mentally and physically as the treatment often makes you even sicker (when you start to kill off the bacteria) before you start to feel better. Although I am very weak physically, I have a very strong mind and I’m determined to get through it and come out the other side – smiling!
I just want to be able to take my dog, Copper, for a walk without pain or passing out. I have lived in Cornwall for over 2 years and have hardly seen any of it. To be able to explore some of it with my boyfriend Paddy would make me incredibly happy :) I would really appreciate your support in any way you can. Any donation, no matter how small would be amazing!! :)
If you can't donate you can always share my Gofundme page on your social media. Or, if you would be kind enough to organize or get involved in a fundraising event please get in touch through this page or through my blog and I will help in any way I can.
I will keep you updated on my healing journey through this page, my blog www.spooniesophia.com, my instagram & twitter @spooniesophia and my youtube channel - just search for Spoonie Sophia.
Thank you sooo much! :)
*Lyme disease, also known as Lyme borreliosis, is an infectious disease caused by the Borrellia bacteria. It can be transmitted to humans by the bite of an infected tick, flea or biting fly. Symptoms include feeling flu-like, extreme tiredness, muscle pain & weakness, joint pain, upset digestive system, headache, disturbances of the central nervous system and insomnia. Treatment is with antibiotics and is most effective if started as early as possible in the disease. Chronic Lyme Disease is much more difficult to treat and involves longer courses of antibiotics, combinations of antibiotics and additional therapies.
For more information on lyme disease please visit ILADS, Lyme Disease UK and caudwell-lyme.net
Lyme Disease Guidelines – an evidence based critique by Caudwell-lyme.net explains the flaws in the NHS guidelines on the testing, diagnosis and treatment of Lyme Disease.
Just thought I would post another quick update to let you know where I am at in terms of my current symptoms and treatment plan as I know it's been a while.
Since travelling back from America at the end of last year I have gained a some new symptoms and my fatigue has increased. My pain and allodynia (hypersensitivity) have spread and also increased and are by far my worst symptoms. The allodynia is so severe that normal clothes, towels, sheets etc are no longer an option for me so I have had to buy softer clothes with no seams, bamboo towels, Egyptian cotton bedding etc. I have to spend 95% of my time in bed or on my day bed in our living room as my pain is so severe! My whole body feels like it's on fire :( My recent youtube video explains more about these symptoms ( https://youtu.be/UmlvkGl3gf8) and I have also done a blog post on what has helped me ( http://spooniesophia.com/2017/08/23/allodynia-my-clothes-hurt-updated-post-video/). I am in the process of arranging to see a top neurologist in London to get to the bottom of my pain and hopefully get access to a treatment that might help me. Fingers crossed!
Another thing that has happened is that my American lyme doctor has taken me off the antibiotic treatment for the time being as I was highly reactive to everything and he suspected that it could be making my pain worse.
We have now decided to focus on building up my immune system, detoxing and working on healing my gut which has been giving me some problems for some time - so much so that there are very few foods that I don’t react to which is a bit frustrating and limiting when it comes to mealtimes.
I’m pleased to say that I have now started working with an amazing Naturopath who is going to help me with these issues - and also with treating the lyme and co-infections in a more holistic and gentle way. She has had lyme disease herself when she was younger and has fully recovered so I have every confidence in her!
Thank you SO much for your continued support!! The ongoing fundraising will continue to allow me to access the best medical support for my illness including purchasing lots of high quality supplements and medicines, and paying for specialist consultations and blood tests. Despite a further decline in my health this year, I am as determined as ever to get there!!
Thanks for taking the time to read this update :)
Thank you so much for your continued support and kind donations!! You are all amazing!
There's a new video on my YouTube channel! 3 MONTHS POST USA TRIP UPDATE Can't believe it's been 3 months (actually almost 4 now) since I've been home...time flies!
Hope you're having a lovely day in the sunshine ☀️☀️☀️
If you'd like to chat, leave me a comment on my video on YouTube :)
I have my final video from our USA trip to share with you today. It's shows my last week in clinic – I was only in for two days but they were very long and intense days, and our journey back home to the UK. It was touch and go as to whether I would make it onto that plane but with the help of my incredible Mum and all of the determination and strength I could muster, we made it home after 9 long weeks away.
My treatment will continue for some time back here in the UK. I will keep you updated.
I really hope you enjoy watching. If you'd like to leave me a message/comment you can do so in the comments section of the video!
I have another Video for you today of Week 8 of my trip! It shows us making the decision to extend our time in America by two weeks, meeting another girl from the UK called Beth who has also Lyme, and a trip to a Christmas Fair where we sampled chocolate fondu. It was the hardest week yet with me being unable to do absolutely anything by the weekend. But we got through it!
I really hope you enjoy watching :) if you'd like to leave me a message/comment you can do so in the comments section of the video!
Thank you for your continued support, I am so so grateful!
guts are key . stem cells can do wonders before to gets to bad . cut out sugar and change what you eat . controls body tonhelp or hurt. i have to do it myself . i got lyme and it messed up my knees . hopefully it is mostly gone . key is food and positive . coming ng to thr states look west clinic.
try this . west clinic in idaho . dr west . he ivs different things and has great results. the blog shows whst he does. whenlifegivesyoulyme.blogspot.com
I am sorry to learn of your situation and having dealt with Lyme Disease for an extended period (exposure 1998, treatment since 2012) can empathize. There is an alternative to the clinics that you note, which is to self treat with oral antibiotics, and herbal and probiotic supplements. The costs would be much more manageable. If this alternative is something you are willing to consider I am more than willing to provide you with background information (books, research articles, my own comments) and sources for the medications and supplements, some of which you can prepare. However you approach your treatment my best wishes to you! To simplify contact I can be reached at 'pat_r_james at hotmail dot com'. Best wishes!
I cannot afford to donate right now, but have shared and will continue to do so. When I am selling more Tarot readings/crafty items, I will come back to leave a donation. I wish you all the best. Ali x
Thinking of you both, lots of love Carol x