I’m wondering if anyone could in any way help me? I was bitten by a tick in 2011 I didn’t seek medical attention as I didn’t know the risks. I became unwell I lost my hair and my facial features changed. I nearly died. Then finally in December 2016 I was diagnosed with Morgellons Disease because apparently it’s the only illness apart from bovine digital dermatitis that fibres literally come from the skin. I was put onto 100mg Doxycycline, 150mg Sertraline and 5mg Aripriprazole every day. Iv been on them ever since diagnosis. Unfortunately I had to transfare my care from Dr Anthony Bewley, Of The Royal London Hospital to The Royal Preston Hospital. Because I was to sick to travel to London all the time. The Royal Preston Hospital no nothing about Morgellons Disease. I am only existing not living at the moment. Iv done extensive research into Morgellons Disease I found the main research foundation in America. They say they have proven in laboratorie tests there is a parasitic infection. Skin biopsies taken from 20 Morgellons Disease patients came back 18 positive for Lymes Disease. Only 10% of Lymes sufferers will go on to develop Morgellons Disease. I will attach a message between me and the Charles E Holman Foundation below.It sounds like your doctor may not understand Morgellons or Lyme. Doxycycline 100mg daily is nothing for a Lyme/Morgellons patient. Have you seen an ILADS trained doctor and been tested for Lyme or Relapsing fever Borreliosis? You may also have co infections as many of us have Bartonella as well. These negations need more aggressive treatment. In case you haven’t found an ILADS trained doctor, here’s a link to help you find one.
I am now very worried about my future health I have three children. I can’t claim benefits to help me as my disease is not recognised even though Iv had a diagnosis? I can’t work due to the debilitating fatigue and intermittent pain, tremours etc. I have no funds available to get treatment. My nhs test for Lymes came back negative. The NHS tests are flawed I’m losing the will to live. I’m not trying to make you feel sorry for me I’m just speaking my mind and praying that people will help. The hardest part of having this Disease is it’s not acknowledged or treated correctly. I feel lost in the system. I’m at a total loss as to were I go for help? I have so many photos of the fibres coming from my skin and goo and black liquid stuff. It’s like something from the xfiles you have to see it to believe it. Iv had so many people witness it including a gp, two ambulance men and a Dermatologist. I’m not crazy and I am far from delusional. I was an outgoing social person before getting ill. Now I have no quality of life at all. I feel let down by the NHS. I saw so many doctors before diagnosis. All dismissed me. I felt scared and lost. If not for being a mother I would of ended my life. This Disease has impacted not just me but my husband and children. I lost nearly all my friends and family because they didn’t want to help me or believe me. I’m still to this day very hurt by them all. I miss them all so much. But I have to accept they never cared for me like I did for them. Although Iv been diagnosed and put on antibiotics I am still very ill. If I can get the funds I can get the proper tests done to identify what other co organisms exist within me. Then I can get the correct treatment. So far the antibiotics are just extending my life. My life has been consumed in every way with this disease. Imagine having a parasite using your body as it’s host inside and out. Imagine feeling it moving through your body, the pain and mental torture. I endure that every day of my life. Iv got Arthritis through out my entire body, neorological damage, debilitating fatigue. Also I have muscle spasms constantly and my body always feels like it’s bracing itself for impact. Tense, brain fog eye sight problems unable to attend social events. I honestly would not want to wake up if it wasn’t for my husband and children needing me. I feel like a failure a complete burden to them. But without me they would fall apart. So I fight through each day of pain and mental torture mainly for them. I just need answers as to what parasite and bacteria have infected me?