I'm Phil and I live in London with my partner May and our 4 year old son Reed. I work for an arts charity and I am an artist making paintings and graphic works.
I am raising funds for my partner May who has been ill for 3 years with Chronic Lyme Disease and co-infections so that she can continue to have ongoing treatment at a clinic in Augsburg, Germany specialising in treating Chronic Lyme Disease and co-infections.
There is a possibility our son may also have Lyme disease and co-infections unknowingly passed on to him through pregnancy and these funds will help pay for his blood tests and possible treatment.
May was bitten by a flying insect in 2010 during our family holiday in the UK. She became ill the next day with a high fever, joint pains and generally feeling unwell. A month later she became acutely ill with vomiting, severe headaches, stiff neck, joint pains, facial numbness, breathing problems and confusion. She was admitted to A&E where the hospital suspected Lyme disease and gave her a week of antibiotics. Weeks later she was still very sick with chills and uncontrollable shaking, bed bound for the next 4 months. Her GP had given her a few more weeks of antibiotics but questioned her illness. Her ELISA blood tests for Lyme kept coming back negative and through desperation we took her to the London Hospital for Tropical Diseases who literally laughed at the idea she could have Lyme disease or any infections. It was one of the darkest times not knowing what was wrong with her as she deteriorated and was in so much pain.
Eventually a Lyme Literate Medical Doctor (LLMD) in the UK confirmed meningitis and sent her bloods abroad for more sensitive blood tests that the UK does not offer. He diagnosed May with Lyme Disease; a bacterial infection caused by a spirochete (from the bite of an infected tick or other blood feeding insect) which attacks any organ of the body, including the brain and nervous system, muscles and joints, and the heart. She also tested positive for a co-infection called Bartonella (Cat Scratch disease); a serious bacterial infection that affects red blood cells and organs.
May took oral antibiotics for 18 months over the next few years with some improvement but the tablets caused gut problems and allergic resistance. She had to stop and quickly relapsed. Her LLMD retired and with no experienced LLMDs in the UK we travelled abroad to a specialist clinic in Germany treating Chronic Lyme disease and co-infections for more knowledgable care.
May was convinced she had further co-infections that were stopping her from getting better. Further blood tests in Germany showed she did indeed have more co-infections; Babesia; a form of malaria and Ehrlichia/Anaplasma; a parasitic disease that infects white blood cells. Lyme disease was still present on top of the existing Bartonella infection. Her CD57 cell count showed low lymphocytes and indicated a chronic immune-suppressive situation caused by the Lyme bacteria Borrelia burgodorferi. The doctors also think she has Chlamydia Pneumoniae and Mycoplasma.
She is deteriorating again with neurological problems. She has daily fevers, night sweats, headaches, breathing problems, fatigue, dizziness, unexplained weight loss, brain fog, memory loss, headaches, nerve pain, numbness, muscular and joint pain/weakness, muscle twitches and walking difficulty.
The treatment Appeal
Due to delayed treatment and undiagnosis in its early stages May has developed a more serious debilitating condition. The NHS have refused her the recommended intravenous antibiotics as they still do not acknowledge Chronic lyme disease exists and only offer 4 weeks oral antibiotics. With no choice we have returned to Germany for May to have IV treatment and other supportive therapies, but we can only afford 2 weeks. We spent thousands trying to get to the bottom of her illness, getting a diagnosis and the beginnings of her treatment back to health. We don't have any more funds for May to have longer IV treatment, or in the long term buy the necessary supportive supplements for her immune system. Ideally the clinic have recommended at least 6 more weeks of IV. They are experienced in treating co-infections combined with lyme disease, a lethal combination that causes a compromised immune system increasing the risk of a severe illness and becoming life-threatening.
The LLMD is convinced May has had Lyme disease since childhood from a previous tick bite as the onset of her illness was so severe. Her immune system kept off the illness but the second insect bite 3 years ago triggered her immune system to collapse. This means there is a likelihood that our son has congenital Lyme Disease. It is incredibly painful to think our healthy little boy may become ill. The funds will pay for his blood tests and if positive his treatment. There are no pediatric LLMDs in the UK. The prognosis of young children under the age of 10 being cured from Lyme and co-infections is very good.
Our savings has paid for 2 weeks IV antibiotic treatment, consultations and supportive rehabilitation therapies at the clinic in Germany. May has been given a treatment plan for a further 6 weeks of IV. The estimated cost for this per week is approx £1000 per week with regular blood tests, retesting to see if the infections have cleared during treatment, ultrasound and ECG to check her liver and kidneys, and essential immune supporting supplements. Our son's blood tests cost £1,300 for the same range of infections May has, tests that are not offered in the UK.
We know the cost of her medical bills is more than what we are fundraising for:
IV at £1000 per week for 6 weeks
£1300 blood tests for Reed
£1000 repeat blood tests for May
£250 per month immune support supplements
£350 per month herbal antimicrobial treatment
The more money we raise it can pay for another week of IV for May, her accommodation during treatment and following the end of IV a long term herbal antimicrobial treatment costing approx £350 per month for at least an estimated 8 months.
Lyme disease is a bacterial infection which can be treated with the right expertise.
May used to work in education teaching art to children as well as being an emerging artist making film and video, photography and installation. She exhibited her work widely and was in the process of developing various video works before she became ill.
She has had to give up her artist practice and job due to her illness. It is sad to see her lose her passion for her work, something she had always enjoyed since I met her art college.
The picture of May was taken before she was bitten when she was at her happiest being a full time mother. I can't remember the last time we had a day out as a family together and did normal things. It has been tough for Reed to understand why his mum can't look after him any more.
If you've never come across my work my website is http://www.philashcroft.com
I have a shop selling limited edition prints which I am offering here for your donations from £25 upwards. Or if you prefer you can purchase them from my shop http://phlash.bigcartel.com/ All the sales will go towards our campaign. If you are interested in making a donation for a painting please contact me.
E.g. If 50 people bought a £100 print we will meet our target. Obviously if we receive more donations May's treatment can be extended for longer with herbal treatment at home following IV treatment.
Its fine if you want to donate and not claim a print, or if you are only able to donate a small amount, we would be grateful for anything however small we receive.
If you cannot afford to donate and would like to help our campaign please share this link to your friends and family, colleagues etc.
Thank you from Phil, May and Reed.
Donation of £25
Yeti Over Mount Fuji XIII
Yeti Over Mount Fuji (Yellow)
Donation of £100
Yeti Over Mount Fuji (Magenta)
Donation of £200
More information about Lyme Disease
Chronic Lyme develops if it is not diagnosed and treated early, the Lyme spirochetes can spread affecting the brain and nervous system, muscles and joints, heart and circulation, digestion, reproductive system, and skin. Most cases are caused by the nymphal, or immature, form of the tick. Nymphs are about the size of a poppy seed. Because their bite is painless, many people do not realize they have been bitten.
Co-infections occur when a tick carries more than one disease, so people can get more than one co-infection from the bite of a single tick. Co-infection generally results in a more severe illness, more symptoms, and a longer recovery.
Ehrlichia / Anaplasma phagocytophilum is caused by rickettsial parasites called Ehrlichia that infect white blood cells. Severely ill patients can have low white blood cell count, low platelet count, anemia, elevated liver enzymes, kidney failure and respiratory insufficiency. Deaths have occurred.
Bartonella is a bacterial infection. It is mainly carried by cats and causes cat-scratch disease. In serious cases it can affect the whole body. Once a human is infected by an animal bite or scratch, or by an arthropod – like a flea or tick – bite, Bartonella takes up residence in red blood cells and endothelial cells – the cells that line blood vessels, ultimately affecting multiple organs and organ systems.
Babesia is a tick-borne malaria like illness caused by an infection from a malaria-like parasite that infects red blood cells. Complications include very low blood pressure, liver problems, severe hemolytic anemia (a breakdown of red blood cells), and kidney failure. The disease most severely affects patients who are immunocompromised.
A good account in understanding how it feels to have Chronic Lyme Disease: