I need alittle help from my fellow LGL members. I am in my 5th year with LGL. I have gone through Dr. Loughren treatment protocal and haven't gotten any good results. He reffered me to Dr. Marskeovshi, ( Cleveland Clinic:) I have tried 3 different treatments with him with no good results. He tried to get a drug, vorinstat but we could not get approval from the insurance company. So he wants me to go up and get admitted to the hospital and do this ATG therapy. So does anyone out there have had to do this therapy? Does anyone have any other suggestions I what we might try? Any help would be appreciated. Thanks

Hello Jay. Sorry to hear about your treatment challenges to date. I was given ATG (horse as opposed to rabbit) few days after my diagnosis last summer. I also got cya and high dose of prednisone. It worked to bring out neutrophils out of my bm which reached as high as 6.4 about 3 weeks later, but they didn't last as the disease took over once again about 6-7 weeks after the therapy. This is no reason to be discouraged though as we all react differently. The docs had high hopes. I suggest you discuss this with your doctor in detail and probably give it a shot. Btw, I'm an admin of the only LGL support group on Facebook. We would love to have you as a member and a fellow LGLer. Search for this group on Facebook. It's a group, not a page.

Thanks for the reply solidorange...how do I find this facebook group? Jay

Jay. Please go to my profile and click on the link under "website". You could also search for 'LGL group' within Facebook search tool. Let me know if neither works.