I won’t bore anyone with the full length story, as so many suffering from Lyme disease and related secondary conditions have been through similar experiences however I’ll just give you a quick overview so perhaps you can give me some advice and I’d particularly love to hear from anyone in the UK (or anywhere tbh) affected by Morgellons.
*I am/was as a professional vintage pin up model (1950s is my passion but I did shoots and film extra work on historical recreation of the styles from 1930s Flappers to 1980s Punk & every other time period in between. Alongside this work I am a Media & performing arts translator, subtitling and voice over specialist. Until May 2022 I had a relatively successful career and stable income.
*March 2022 during a shoot in a not so well kept outbuilding I got stung/bitten by what I thought was a wasp.
Within a few days I developed a massive strange looking boil and redness on my ankle. After a few days of pain, feeling unwell and not being able to move my foot I contacted my GP who diagnosed a spider bite. Eventually I found out it was a tick and I was told by my surgery to get it removed by the veterinarian clinic!
*Suddenly had what I can only describe as deathly feeling with high fever swelling aches and general discomfort-of course we were still in the heights of pandemic panic so I was tested for Covid. Positive.
*I knew it was not Covid as none of the symptoms matched anyway after much running around and eventually paying for a private doctor appointment, I was diagnosed with Lyme disease and Morgellons symptoms soon followed.
*Treated with daily antibiotics intravenous
*A little improvement until October 2022 when I was rushed to hospital because my right side was frozen. More antibiotics thereafter with minimal success.
*Only way to be treated with respect and not made out to be crazy (I suffer from OCD so it was all blamed on this) was to get ongoing care from a private clinic in London, consultant worked with medical colleagues in Germany and swiftly started finding new remedies and treatments including dietary supplements and changes, regular brain scans and memory exercises as well as no more antibiotics and managed to get me through the worst of my symptoms.
*£££ money money money… although I was able to get a little funding from the NHS this has run out and I am now unable to get further private treatment.
*Here I am… have lost a lot of my vision and diagnosed with CHRONIC Lyme disease and ongoing flare ups of Morgellons.
*DWP are hell to deal with and have had my benefits stopped twice for not being able to complete forms despite them being aware I cannot see what is written!! And need assistance which is incredibly difficult because of where I live.
Has anyone successfully claimed PIP? What support is available in your area? Any recommendations for Morgellons‘madness’? Sometimes it feels like I am going nuts and seeing bugs and the only thing that helps is to knock myself out with strong medicine.
Thank you in advance
Lylia
