Posted 9/2/2018 9:09 PM (GMT 0)
I’ve been seeing an LLND for almost a year, but have only been being actively treated for about six months total due to several problems arising.
First, antibiotic treatment has triggered and is increasingly worsening a mast cell activation disorder. My LLND is not knowlegable on mast cell disorders and the only advice she could offer me was to stop treatment and see an immunologist, which I did. The immunologist agreed that I should stop treatment, and after a two month break the mast cells calmed down, but having started antibiotics again the issue has returned worse than ever. I need a doctor who is knowledgable on both of these issues and can offer me a solution to the two together, because if the only way to stop the mast cell activation is stopping treatment then I will never be better from the infections.
Second, seeing multiple doctors is getting very expensive and if I don’t find somethig more sustainable soon I won’t have any money for treatment at all. I need a doctor in MA who takes either Blue Cross or Masshealth (or both) which I know might be hard to find, so I would even settle for just a mast cell-literate immunologist that would be willing to work with my current LLND to find a treatment that will work for me.
I feel like I’m starting to run out of options and if anyone knows of anybody who might be able to help me with both of these problems I would more than aporeciate it.