Hi, I thought I'd introduce myself on the forum. I'm Jamie 38 years old from London but living in my adopted city of 5 years, Sydney. I was diagnosed with LGL early last year after repeated infections, mouth ulcers, lethargy etc. I had a Bone marrow which didn't show anything remarkable but my bloods showed T cells and a falling neutrophil count. During the year i have had three hospital admissions with neutrophils of <0.5. About six months ago I was started on Methotrexare working my way up to 25mg weekly but my Haematologist has since discontinued as it wasn't working. I'm now on GCSF twice weekly which seems to be keeping my neutrophils around the 6 mark. I'd love to hear from anyone else who is interested In chatting and sharing advice re this illness. Thanks Jamie

Hi Jamie, I am sorry to hear about your diagnosis. I am also living in Sydney (Cherrybrook) and was diagnosed with T-LGL on April 2011 during a regular blood test. I have no symptoms at all. I took Methotrexate for 9 weeks in the middle of 2011 and discontinued because there was no improvement. I went to a naturopath for a 6-month treatment and my HGB and RBC seemed to improve and stabilise. I now take blood test every 3 months and see a haemothologist at the RNSH every 4 months. Which doctor/hospital do you go to? I found a forum at Facebook dedicated to T-LGL which is extremely useful. If you are interested, the URL is www.facebook.com/groups/190887807714630 the group name is Large Granular Lymphocytic (LGL) Leukemia Group Cheers, Herman

Hi Herman I was very interested to hear you say you saw a naturopath was diagnosed by a routine blood test I live in the UK I am currently taking 15mg methotrexate and my bloods are normal but I am having a lot of side effects. Previously to this I was on GCSF injections which again did the trick but enlarged my spleen. I feel the cure is worse than the disease for me! What advice did the naturopath give you I had a low hg count in the early days and the haematologist did not think the gcsf injections would do much for this dont laugh but I started taking acai and my count improved rapidly its pretty steady now at 12 my haematologist couldnt explain the rise but poo pooed the acai so who knows? thanks Geraldine

Hi Geraldine, Early April 2011, during a regular check up, my GP included a full blood count test because I turned 50 in October 2010. I had no problems at all except for the occassional mouth ulcers which seemed to appear when I get stressed (normally with work). But these mouth ulcers normally disappear after 7-10 days. I have been having this since I was a teenager. The test revealed that my HGB, RBC and Neutrophils were below normal and my Lymphocytes were above normal. He asked me to repeat the test and got the same results. He immediately asked me to see a haemothologist in May 2011. After more blood tests, MRI and bone marrow biopsy, I was diagnosed with T-LGL (i.e. T-cell granular lymphoctic leukaemia). The haemothologist asked me to start taking 10mg Methotrexate weekly. There was no improvement after 9 weeks and I had some side effects (diarrhea and nausea). I told the haemothologist about the side effects and that I wanted to stop taking MTX and to try the treatment from a naturopath. He approved and supported my decision. First of all, the naturopath gave me a detox treatment to get rid of the radicals from my body (for 2-3 months). After that, he gave me Vitamins, Vitamin D and some herbal. My HGB and RBC showed some improvements but still below normal. I stopped the treatment in February 2012. I have also been drinking Acai Berry (freeze dried) usually mixed with juice or soya milk daily since October 2011. Starting this year, my haemothologist told me to take blood test every 3 months only and to see him every 4 months. Hope this information will help you. Please let me know if you have any questions. FYI, I recently joined a group in Facebook consisting of T-LGL sufferes and their family. If you are interested, the URL is www.facebook.com/groups/190887807714630 Cheers, Herman

Hi Herman, I am being treated at RPA in Camperdown as I live in Marrickville. My Haematologist was dr Davies. A very nice lady, also from UK. Unfortunately I still haven't got all the answers I want, just like lots of other people that I read about. Im now treated by Dr Ku in the same clinic as my doctor returned to the UK. As for my condition, My bone marrow aspirates are unremarkable and the T cells are minimal on cytometry but the infections I get are severe requiring hospitalization. Usually the infections are staph aurious skin infections. Im admitted with the diagnosis of febrile neutropenia. As you probably know, this is a medical emergancy requiring hospitalization. Methotrexate did not work for me so I am just taking twice weekly GCSF to stimulate my neutrophils which is keeping me well. Thanks for the link to the Facebook page. Jamie

HI all my daughter who is 23 now was diagnosed with tcell lgl 4 years ago I believe she is one of the youngest to have this disease her hgb is steady around 11 and her neutrophils though low, runs around 400 to 800 are also steady. She is on NO medications but does take a lot of antioxidants, acacia berry, glutethione , multivitamins she eats a lot of fruit and exercises everyday for an hour. Methotrexate has been suggested but she is trying to stay Med free as she want to eventually have a family. She does have some bad days where she is in bed all day because she is just exhausted. She is being followed by Dr Loughran in Hershey pa. And a local hematologist, she has blood work done every 4 to 5 months.her lowest hgb was 7.8 and lowest neutrophils were 300. I will look up the fb link thanks for the info