Laura's treatment fund
Hi there, my name is Laura.
Everyone close to me will know that I have been struggling with my health for nearly 10 years now. It’s been an unnerving and frustrating rollercoaster visiting countless GP’s, consultants, surgeons and nurses. I’ve been scanned, x-rayed, injected, manipulated, prodded, poked and strapped to all kinds of devices including a week long heart monitor and 24 hour blood pressure monitor.
My symptoms vary from day to day. Some become worse, some can improve slightly and some stay the same. They include:
Heart palpitations and heart block
Autonomic nervous system dysfunction (Dysautonomia)
Blood pressure and heart rate abnormalities
Fatty liver and jaundice
Extreme back and hip pain and stiffness
Various food and chemical intolerance
Brain fog and memory loss
Anxiety and depression
In the past 4 years my symptoms have become more life limiting and I am now unable to work full time or involve myself fully in a lot of the day to day stuff expected of a woman in her early thirties. I sleep a lot yet feel constantly exhausted. I’ve blacked out on a bus, in a car and while working on a till. Sometimes I can hardly move because of the pain. I’ve forgotten the names of people I have known for years and even gotten lost in a Morrison’s carpark. About a year ago I lost 2 stone unintentionally and very rapidly became clinically underweight. I often feel like I’m walking around in a daze. I never know what to expect from one day to the next.
I have sadly come to the end of my journey with the NHS. Final stop? A referral to a pain clinic, where I will apparently learn ‘coping strategies’ to manage my pain. With my head hitting this huge and final brick wall I finally lost hope. The fight I’ve maintained throughout all this left me and my spirit broke. I don’t want to just live with it! I want to find an answer and live and work again. I want to study and give something back. I don’t want my family and friends to worry anymore. I don’t want to live in fear of my body giving up on me.
I paid to see a private doctor and was told I have the bacterial infection Lyme disease but would not be able to receive treatment on the NHS as they do not recognise the infection in chronic form.
With this diagnosis I was led to a private clinic in Hemel Hempstead called Breakspear. They were recommended to me as they are one of, if not the only, clinic in the UK that deals with chronic Lyme. At the end of last year I was lucky enough to go to the clinic for testing. My appointment at Breakspear revealed that Lyme was the least of my worries.
My Autonomic nervous system is not functioning normally and my brain stem is being over stimulated. This is pretty serious as your autonomic nervous system controls pretty much everything including breathing, heart rate, blood pressure and digestion.
I found out I’m a mutant! I am completely missing a detoxification pathway that allows the body to get rid of toxins and one of my other pathways is incomplete. Over the years I have steadily built up dangerous levels of chemicals and nasties in my body which is now overburdening my struggling liver and being stored in the tissues of my body. I am also unable to methylate correctly.
I have allergies and intolerances to quite a few foods and chemicals. I struggle to get the nutrients I need to sustain myself and this has led to me being deficient in many vitamins and minerals.
For the Lyme I was tested via a Western blot and showed positive for 3 bands. The Dr said it is something I need to be aware of but at the moment I should address the other issues first. My body would not be able to cope with antibiotics or any form of ‘die off’ as it would have nowhere to go and be trapped in my body.
All of this has lead to my immune system being put under a huge amount of pressure and the poor thing has gone mad. It is now attacking healthy tissues because it can no longer differentiate between good and bad. This is called auto immunity and can lead to complications and in some extreme cases death.
There is a lot of information to take in but I have some answers! I do have some serious issues but they are treatable and hopefully I can improve. This clinic holds hope for me but of course it comes at a price as it cannot be funded by the NHS and that is why I am unfortunately here asking for your help.
They have outlined an initial 12 week plan which includes further testing and various treatments to combat the damage that is being done and try to level the playing field a little. Once my body is in a better state then I can look at how I can treat my problems long term and hopefully maintain a more normal existence. To start with this will mean travelling to Hemel Hempstead twice a week for 12 weeks for testing then treatment. I will also, at some point, have to be admitted to the hospital for a short period of time. There will also be the prescriptions they write for me which I have been told will be many and I will have to maintain some amount of supplementation for the rest of my life.
I hate to ask for money. Money is the least valuable thing in the world but holds so much power. I understand not everyone will be in a position to offer financial help but if you can spare a few quid or even a few pence to help me on my way then that would be incredible. If not, no problem. You could maybe help me by sending this link to others. Either way I would be forever grateful.
For those who choose to join me on my new journey, my aim is to post regular updates showing my progress along the way.
I truly believe that great things can happen and for the first time in years I’m excited for the future.
Thank you for your time. Big love,
It's been a while eh?
I hope you're all enjoying the winter festivities and looking forward to some time off over Christmas?
This time of year is always a time of reflection for me. I find myself thinking of the past year and the ups and downs. Yes it's been tough but it's also be amazing and the support I have received still blows my mind when I think of it. I really am blessed and feel grateful every day for being where I am. I've learnt so much and come so far. I still have a long way to go but I'm heading in the right direction and that's the important thing.
So first update, I've managed to enroll in college and start studying as a mature student part time! I know, I really must be mad. I feel overwhelmed a lot of the time but I was in a dark place, focusing my energy solely on how I was feeling and what I'm unable to do, so I thought, you know what? I need something positive to focus on too, like my future for when I WILL be better. So yeah... although I sometimes think, what the hell am I thinking pushing myself like this, here I am and I'm not doing too badly so far!
Second update, the serious stuff.
I had the IV antibiotic, which didn't go so well, so I had a few months of a herbal protocol to boost my system a little bit with the idea of trying antibiotics again down the line.
When the time came the doctor and I spoke and we decided that because I wouldn't have the funding for a full course of IV I should try the oral antibiotic route. This is something I wanted to avoid as it can seriously mess you up but this is kinda the last option and I'm running out of money fast. So yeah... cut to me being on strong antibiotics for just under a month and I have had my review. I'm half and half for pros and cons at the mo. There have been slight improvements in some areas but not in some areas, like my back pain for example. He explained that getting to the lyme hidden in joints is difficult but he didn't say it was impossible. He was encourage that there are pros and my liver and kidneys are seemingly keeping up with it so far, so he would like me to continue into the New Year for another month to see if I can improve further. Obviously this comes with a price tag even though it's cheaper than IV it's still hella expensive as I have to take supportive medication too.
I've stretched out the funding by using credit cards (yes I know, dangerous) but it means I have been able to carry on for longer with what I have. Unfortunately this is not sustainable for the long run but I will consider my options when it comes to it. Right now I just want to focus on the hope of improving further, being able to finish my study and in the future holding down a full time job again...and...maybe with a qualification and better health...wow...dare I say a career, or a job that I love and don't just struggle through. How incredible that would be. There you go... I think I have my Christmas wish.
As always, thank you to everyone who has donated, cheered me on, comforted me and continue to support me.
You know I hate to ask for help but if you can share my story and raise awareness of Lyme or you think you can support me in some way, thank you.
Oh and get out there and enjoy the outdoors while the flippin ticks are hiding from the cold! ;)
I whole heartedly wish you all a merry Christmas and a very happy New Year. I'll see you on the other side with hopefully a positive update for 2019!
Big love, L x
I had my two week review with the Dr over the phone on Wednesday. He's increased the dosage of what i'm currently taking and he wants to speak to me again in a months time to discuss trying an IV again. Hopefully by then i'll be in a better condition to cope with a full infusion.
I hope you're all well and enjoy the rest of your day.
I'll update with the verdict in a months time!
Thanks as always for your support.
Big love, L.
I'll try to keep this one as short as poss.
As most of you will know I went for my first attempt at IV antibiotics this Weds 22nd to fight back my neuroborreliosis and bartonella infections.
In true Laura stylee it started well, my veins were good and I had a nice cosy bed and book, I even took a pic of me hooked up to document the beginning of the end for the idiot bacteria... but then we started to have problems. Long story short my body began to react and they had to stop just over half way. To say I was gutted would be an understatement.
The doctor said that he didn't think it was allergic, just that some people who are weak and sensitive can not stand the high dose infusions. Unfortunately for me it seems I am one of these people.
He has instead recommended we try a more natural route for now to try to kill off some of the little gits in a kinder way and then when I'm in a better state and they least expect it try nuking them again. So I am currently taking a herbal protocol used a lot in the USA that my doctor has had a lot of success with. Lets hope my body behaves a little better this time. I am trying to help it after all!
I have a review with the Doc in 2 weeks. Until then orders are to rest and sleep as much as possible to support the immune system and drink loads of water. I think I can manage that.
I will update again once I have spoken to the Doctor in a fortnight and know what's gonna happen next!
Enjoy the weekend guys and gals and thanks as always to you all for your generosity, kind words and loving support. You keep me going!
Big love, L x
I finally made it to my overdue doctors appointment at Breakspear and wow...what a whirlwind or information and emotion that was!
After my two consultations with the previous doctor and a year of extremely expensive testing, treatment and pharmacy costs I finally made the trip after a very up and down 2018 and in recent weeks a steady decline. I decided after speaking with a wonderful nurse who works there to see a different Doctor for a second opinion.
I went to see a Professor who specialises in Lyme research among other things and I was told he was very thorough, empathetic and very cost conscious. This sounded too good to be true but I wasn't disappointed.
He gave me a thorough physical examination and reviewed my recent test results. Unfortunately for me he was not happy. My lyme infection is well and truly active and is now most definitely in the brain and effecting the nervous system. Not only that he also diagnosed a co infection called Bartonella which is incredibly hard to pick up but with his experience it was very easy for him to detect just from my symptoms and some skin markings I hadn't even thought about! Made me wonder about all the times I felt unheard by the other doctor and how she didn't even check me over physically the last time I saw her! Hmph. Anyway...
To say that I was shocked was an understatement and I'm so very annoyed that I have been, in his words 'let down by so many people. He said I'm very ill and we need to get on top of it and quickly.
He was also dismayed at the amount of money I had spent so far and rolled his eyes and said 'no commented' about the opinion and recommendations of the other doctor. I didn't know better and have spent most of the funding in the wrong direction it seems. But as I said in a past post I had to try. I didn't know what else to do and some of it did help temporarily now and then. When you've felt so ill for so long any tiny bit of relief seems like a miracle and you don't want to tempt fate by questioning if it could be better in case it gets worse again. At the end of the day I had to put my trust in someone.
I suppose I should really be doubting him too but without you being there at the appointment it is hard to describe. His manner was completely different and he immediately put me at ease. His warmth, knowledge and explanation, his certainty and his urgency all put me at ease and for the first time since being at that hospital I felt trust in what I was hearing. He wasn't rushing me, he was listening and everything he said he had an explanation or scientific study for. He didn't talk to me like I was an idiot which is very rare I have found with medical professionals.
So, the plan.
He has refused any more testing as he says I've spent too much already and its pointless. He has told me to stop taking some of the pills I'm taking immediately and they could be doing more harm than good. He has also prescribed different meds and the start of IV antibiotic infusions as soon as possible. He wanted me back next week but the best I could do was in two weeks time. So on the 22nd August I will be making my way back to the hospital to have my first dose of Vancomycin with the intention of penetrating the blood brain barrier efficiently and quickly.
The Professor will be there and will speak to me after to discuss our next move. He is aware that my funds are rapidly disappearing and is interested in me spending as less money as possible for the best long term outcome. Hallelujah!
Without bombarding you with too much information I think that covers the basics.
Thanks to a diligent and intuitive nurse and now a Lyme focused, Fawlty Towers loving, empathetic Doctor I may finally be on the right path!
I don't know how effective this treatment will be. He's confident so I'm trying to be too although I'm very frightened.
As always, thank you everyone who has supported me emotionally as well as financially. I still struggle with my pride but I genuinely feel so lucky to have so many wonderful people helping me.
If you can share my story/link or want to ask me questions privately please feel free to do so.
As always, keep safe kids and I'll update after my IV.
Big love, L x
Please check out medical medium on Facebook and Instagram. I feel his information could really help you as he has helped so many with the same condition.
* POTS as well as lyme co infections, sensitivities, mitochondrial dysfunction and dysutonomia!
Hi Laura, I stumbled upon your go fund me. I'm also in the same situation, fund raising for breakspear. I'm further down the line from you though. I first went in june 2016. I was seeing doctor monro but switched to dr Mohammad. I find he's better dealing with budgets but I know so many swear by Dr Monro. I wasn't sure on the LDI too. I did eventually go for it and I have no regrets at all! It's made a big difference. I have POTS and that's recently improved after adding in chemicals to my vaccine. Hang on in there - you're doing the right thing!
Hi Laura, try these people - they might be able to help you, they deal with a lot of autoimmune diseases and help people with them get their life back, which it sounds like is what you want: https://www.facebook.com/mistymountainhealthretreat/ Their contact details from their main website: https://www.mmh.com.au/contact-misty-mountain-health-retreat/