Please help Emma fight Lyme
Despite our best efforts we have not been able to obtain any help from the NHS. They are not able to deal with the complexity of Emma's condition and are very behind on treating Lyme disease in general. Because of this and the nature of this progressive illness we have not had any other option than to seek out private health care. So far this year Emma has had multiple Lyme tests at three different labs all showing positive results, as well as other tests and consultations, which all together has cost over £4,000 so far. We really need your help to beat this!
Emma is twenty-five years old, a compassionate and sensitive person with a huge creative talent but has been exceedingly ill for the last 7 years and not able to fulfil her potential with her creativity or to engage in a normal life of a young person. Despite often looking well and putting on a brave face, Emma's health has been declining rapidly over the last three years. You may know her from her Instagram or blog page which have been Emma's creative outlets and access to the outside world where she likes to share her positivity through photos and raise awareness of chronic illness. This is also her main social interaction with other people.
On a daily basis Emma needs my help with preparing food, medications and personal care such as hair washing and general household duties. I drive her to appointments and also help her with dealing with forms, official correspondence and appointments. Emma spends 90% of her time housebound.
Emma first became ill in 2009 at the age of 18, with flu- like symptoms. She went down hill very fast while she was studying at the London College of Fashion and by the Christmas break she was in constant pain and extremely fatigued which left her in a coma like state. Emma had to give up studying in February 2010 due to her health and became mostly housebound. In this month she also started experiencing POTS (Postural Orthostatic Tachycardia Syndrome) - which the NHS failed to diagnose until 2015. The NHS ran further tests before finally diagnosing Chronic Fatigue Syndrome/ME in June 2010. In summer 2013 after a short period of improvement, in which we started to look at universities again, Emma took a turn for the worse and has been declining in health ever since. This year Emma has been so poorly she's purchased a wheelchair so that she can have a little more time outside of the house.
Lyme disease testing
Over the last year we have become more aware of Lyme Disease and we were shocked at how similar the symptoms are to what Emma lives with every day.
Despite negative NHS tests we decided to get Emma privately tested for Lyme disease through a leading German lab. This test came back positive in February 2016. Further to this, Emma has had other Lyme tests through a private doctor from two more labs which also confirmed Lyme disease. Based on these tests, clinical presentation and history of bulls eye rash Emma was diagnosed with Lyme disease in June 2016. As well as Lyme Disease Emma has 5 co-infections, these are other tick bourne infections and viral infections.
“PUBLIC HEALTH ENGLAND ADMITS ONLY 10% OF UK LYME DISEASE VICTIMS GET DIAGNOSED BY THE NHS EACH YEAR.” Caudwell-lyme.net
NHS Heart monitor to track Emma's POTS symptoms.
Emma experiences over 50 symptoms, including cognitive, neurological and issues with her autonomic system, including excruciating nerve pain in both arms, as well as a deep burning pain in her legs and joint pain, cognitive dysfunction - making thinking/word finding and speech difficult, chronic fatigue, post exertion malaise, sensitivity to light and sound, migraine, headache, dizziness, nausea, palpitations, chest pain, visual disturbance, sleep disturbance, flu like symptoms etc.
POTS is a form of Dysautomonia, it's a dysfunction of the automatic nervous system. It's diagnosed based on the heart rate increasing by over 30 beats in an upright position. Often Emma can experience a resting/standing heart rate of 110-160 beats per minute because her heart works extra hard to get a blood supply to her brain. It often results in dizziness, nausea and can cause temporary vision loss and black outs. To give you an idea a normal resting heart rate range would be 60-70 beats per minute.
This is probably a direct result of Lyme Disease and co-infections.
Another aspect of Emma's Dysautonomia is insuffucuent oxygen levels which she has also been diagnosed with through private testing. A reading of over 60mmHg of oxygen is needed for the body to function efficiently, Emma’s level is at a very poor 24mmHg.
Worryingly, in January this year, Emma started to experience facial numbness which has yet to be explained. As well as further joint pain experienced when walking.
What treatment does Emma need?
As a starting point Emma's private doctor in the UK has recommended:
-a month of intravenous antibiotics
-followed by a month of antibiotic injections
-followed by three months oral antibiotics
- daily oxygen therapy
Emma will need regular blood tests to keep an eye on her liver function as well as regular consultations with her doctor to track her progress closely. After this initial treatment Emma will be reassessed to see what further treatment may be necessary.
How much will it cost?
We can't say for sure what the full extent of costs will be. We estimate that this first stage of treatment will cost over £11,000 on top of the £4000 + that we have already spent.
Despite getting the best care for Emma here in the UK, we have not ruled out a trip to America to see a well known Lyme disease doctor in Washington DC. Travel is extremely hard for Emma so this would be a last resort if this first round of treatment here does not help.
It is 100% possible to be cured of Lyme Disease and co-infections. It's hard to say what Emma's prognosis will be because she has been ill for so long but we are hopeful that with the right treatment Emma will be able to have a normal life once again. She has a lot of catching up to do.
Emma would love to have her independence back and I would love to see her able to participate in life as any young person in their twenties would do.
Her greatest wish is to regain health so that she can fulfil her artistic potential as well helping other people and giving back to the community.
Any donation be it big or small would be fantastic and will help make this journey back to health possible.
Please share on social media if possible - even if you can't donate, spreading the word online would be very much appreciated.
I will update you on Emma's progress on here and Emma will be keeping you up to date through her blog - www.emmaslookingglass.com and Twitter and Instagram accounts @emmmasometimes
It would mean so much to us to have some support through this difficult journey to health and no words could describe our gratitude.
Thank you so much for taking the time to read this.
Lyme Disease or Lyme borreliosis is a bacteria infection which is transmitted by ticks. If not treated in the acute stage with antibiotics it can cause devastating long term illness affecting the whole body. Treating late stage Lyme is a lot harder and often requires long term antibiotics and other treatments to address the damage caused.
For more information on Lyme Disease please look at http://lymediseaseuk.com
For more information on Emma's story you can find it here http://www.emmaslookingglass.com/2016/08/the-journey-that-led-to-my-lyme-disease.html
The other reason I didn’t update for so long is because there was a lot of uncertainties with how my treatment could progress because of my liver issues. For quite a few months after September 2017 I needed almost weekly blood tests costing £58 to check my liver enzymes. Unlike many other patients at the clinic my gp won’t do this for me! Thankfully in spring the enzymes were back in the healthy range and have stayed there ever since. I took a prescription binder every other day for the last 6 months to keep my liver stable. Thankfully that meant I was back to monthly tests which is slightly more affordable although still adds up to a lot.
Unfortunately the prescription binder has caused a few vitamin deficiencies of B12, B2 and Vitamin C. I am now on high dose vitamin C and have been taught this week how to give myself a b12 injection which I will need to do for the next 6 weeks.
These deficiencies are probably responsible for a decline in my health over summer so fixing them will hopefully see an improvement in my health.
In April my doctor requested I repeat my Lyme disease blood tests. He has to do that to justify to the powers that be why he’s treating me. This test unfortunately came back positive still. It wasn’t a surprise to me as I still have many symptoms. I started antibiotics again in spring after this result and after a break to help my liver which saw many symptoms creeping back in and getting worse. Once back on the antibiotics in spring I had some good improvements to my health.
This week my doctor has started me on a drug called Low Dose Naltrexone which has the potential to boost the immune system and help manage pain -blood tests have shown I have a severely suppressed immune system and I have chronic pain so I am excited to see how this might work for me. I am also taking one antibiotic as well as continuing my energy support, detox support and Low Dose immunotherapy (LDI) for allergies. I still take Midodrine prescribed by my nhs cardiologist to help with my dysautonomia; Postural othostatic tachycardia syndrome.
I have around 20-30 symptoms. I did once have almost 60. So to half that in two years is incredible. A few of them haven’t improved at all, my sensory overload from being around people for example. Socialising increases my symptoms significantly and I can feel awful for days after. My doctor says it’s very common with neurological Lyme disease.
On a plus though - I’ve had a few occasions in spring/early summer where I had the occasional odd hour where I almost felt normal. I hope that addressing the deficiencies and helping my immune system will get me back to that level.
I still have a long way to go. I still have those 20-30 symptoms, I still can’t leave the house for very long, still need my Mum to help me with every day life. Everything fluctuates so I can’t plan much. Reactions to the bacteria die off are horrible and disabling.
I turned 28 last week, I’ve been missing from normal real life since I was 19. To live and not just exist is what I want more than anything. This is the reason is why I’ve put my anxiety and self hate for asking for help aside.
With your help we raised 13,000 which has been a great help especially as we have spent 30,000 in two years.
I say this with trepidation, as I don’t want to put off anyone from getting tested or treatment - my case is very different from a lot of others because I’ve needed some very expensive treatment like IV and oxygen.
I really appreciate it if you could help or share my go fund me page on social media or with your friends.
Treatment is often hard, the medication is not kind, some days I've been completely wiped out by it and there's been quite a few herx reactions to deal with. - A herx is a worsening of symptoms due to bacteria die off causing too many toxins to build up. To me it feels like I've been poisoned and have the worst hang over at the same time.
My doctor changes my antibiotics when certain symptoms creep back in - we seem to be using my facial numbness as a marker of how things are going. If it's absent the treatment is working if not we change it. Unfortunately I have also started to experience numbness and tingling down my spine and in my arms and the palms of my hands. This seems to flare and subside. Usually a new protocol gets it under control for a week or so before it comes back. Because of how well I did in December my doctor put me back on that protocol for three months. I now only have a few days left of this protocol before I see my doctor again.
In spring I tested positive for a co infection that we missed off initial testing - Babesia. Babesia is a malaria like parasite that lives and destroys red blood cells causing havoc within the body. We believe this is the main cause of my very low oxygen last year. Since learning about Babesia I am now recognising the symptoms of which I still have many. Considering I've been taking an anti-malaria drug since October it was very disheartening to test positive for it. I've since learnt that Babesia is extremely hard to eradicate. I am still taking the anti-malaria tablets and my doctor has changed my antibiotics to ones that have an affect on Babesia too.
I've been keeping up my long list of supplements for mitochondria dysfunction, detox and nutrition. These cost hundreds every month but are well worth it. I think the mitochondria support has been one of the most helpful tools in getting me stronger and more energised.
I've recently retested my Low Dose Immunotherapy which has been very helpful and is strengthening my immune system by neutralising reactions to food and chemicals. This time my doctor wanted to add in some chemicals which he suspects are contributing to my daily headaches. I reacted very badly too them in the testing room. - a sign that I'm having a bad immune response to them daily. Since then my headaches haven't been as frequent.
I've also had a tilt test on the NHS for my cardiologists who over sees my POTS treatment to get more information about the type of POTS I have. I've had the results that confirm my diagnosis but I have a long wait to see my cardiologists to discuss it.
For those wondering what a tilt test is -let me explain. Firstly the aim of the test is to monitor blood pressure and heart rate from a laying to a standing position and for a while after in a still standing position. In POTS the heart rate goes up significantly more than it should. Blood pressure then drops dramatically causing what's called a syncope - a faint. I managed to stand still for 10 minutes before I became extremely uncomfortable, nauseous and feverish resulting in a syncope. - if we've ever chatted standing and you've notice I'm moving my legs constantly it's to avoid fainting on you!!
Despite the improvements I still have a lot of symptoms. I won't go into all of them but will list a few. -My cognition has been particularly poor as well as my nerve pain, bone pain and numbness which have all been pretty bad recently. I struggle to hold anything cold without it setting off my nerve pain further up my arms. Fatigue is still a big issue but it's improved.
Unfortunately the pains and the POTS are more likely to be damage done by Lyme disease and the other infections. It's likely that no amount of antibiotics will fix them. I'm now looking into stem cell therapy treatment to repair the damage. This potentially means traveling to Germany or America.
The plan for now is to see my doctor again next week and then for my mum and I to reassess what we should do. I'm feeling quite stressed over deciding on the next step. The last time I saw my doctor he was suggesting IV antibiotics again, something we just can't afford and of course might be off the table with my liver showing signs of struggling. I have just been off antibiotics for a week because my liver enzymes were too high. I had a massive symptom flare in this time but luckily my liver enzymes are now just within the normal range so I have started treatment again which has given me some relief.
I really appreciate that you've taken the time to read this.
The month before I started the IV treatment I was put on an energy programme to help with my mitochondrial dysfunction, detox, to help my body get rid of toxins, and oxygen therapy to address my very low levels of o2. My treatment isn't just about Lyme disease but about addressing all aspects of my health and by starting this programme before the intensive treatment I was able to be that much stronger for the IV month. I was exhausted by the end of it but I did notice some small improvements. The most exciting improvement was being able to stand up longer than I have in 7 years. Unfortunately that only lasted as long as I was having the extra fluids into my veins. - the extra blood volume was reducing my POTS symptoms. I felt a little defeated when a few days after I finished the IV I realised it wasn't a long lasting improvement. In November I moved on to twice weekly injections of penicillin but I didn't feel as good as I did on the IV.
I switched doctors at this point as my doctor and I just didn't click. I now see another doctor in the same clinic. He put me on oral antibiotics in December and I feel we're more on the same page about how to treat these infections. To start with I am taking three different antibiotics to kill the Lyme bacteria in all three stages. They will also fight the co infections. I have found this treatment hard at times, it can make me feel pretty bad but this is to be expected.
Some days have been good - they've been better than I've had in years so this gives me a lot of hope. This protocol has been tweaked as my doctor was concerned about my face being numb and tingling again - so far the adjustments haven't eradicated it and it's becoming a daily feature again. I spoke to him last week and he wants me to keep on this protocol and see how I go. In the mean time I'm continuing the extensive energy and detox programmes alongside the antibiotics.
I'm happy to say I'm off the oxygen therapy! The neurologist is very happy with my progress. I came off oxygen abruptly in December (not how I was meant to do it!) and had all my lack of oxygen related symptoms come back - luckily, after a week, they subsided and I felt like I had while using the oxygen concentrator. It's been expensive but well worth it to feel more alive and to have a little extra strength from breathing correctly - well almost! I now have only slightly low co2 levels. For now I have to be monitored every few months and I have had an appointment last week to go over some breathing exercises to try and correct the co2.
Last week I started a therapy for my severe food intolerances - it's called Low Dose Immunotherapy and it works by neutralising the immune response to the food, chemical or metal that you're body is intolerant to. Testing for this isn't easy. It consists of many injections just under the skin of the foods I'm intolerant too along with an antigen. It's a long process to find the right level of antigen which is needed but when I was finished a cocktail was made up that I have to inject everyday to neutralise my immune response. This should take the load of my suppressed immune system so it can start fighting the Lyme and co-infections. I'll also be able to eat more fruit as fructose is one of my severe intolerances and that in itself will really help my body get the nutrition it needs.
LDI is a commitment both time and money wise, I will have to retest every three months and this could be needed for a few years so it's a decision that took us a long time to come to.
My mum and I really appreciate the help we have received so far.
It would be really helpful if you could re-share this page on social media.
We're very excited to say that we have booked my IV antibiotic infusions! I start on my 26th birthday in two weeks time. I'm happy to say what we've raised so far (£3803) will pay for two thirds of the IV month which is a fantastic help!
I've been on daily oxygen therapy 4-6 hours a day for three weeks now due to my levels being very low and I can say there's a slight difference - my body feels clearer - that's the only way I can describe it. I've also been taking supplements to help my mitochondria produce energy as we know through testing that mine doesn't work and we've been told that subsequently I'm exercise intolerant. So that really needs addressing!
As well as lots of good things to help with energy I've been on a detox which consists of supplements to eliminate heavy metals, liver support, as well as a clean diet without gluten or sugar. - sugar feeds the Lyme bacteria - no birthday cake for me then!
I did originally notice my pains calm down after starting the detox programme but I seem to be in a flare up right now. However I'm feeling hopeful and excited to get the intensive treatment started! If all goes well with next month I will move on to antibiotic injections in November which I'll need twice a week for a month before moving on to the last stage of this round of treatment.
Thank you so much for all the donations so far.
Sending you so much love Emma. You really are such a beautiful and caring friend. I really hope that we can reach your target. And get you on the way to better health. Your a wonderful friend and I treasure you. Lots of love Alison ♥️♥️♥️