← Return to Does anyone else have MGUS?
DiscussionComment receiving replies
Replies to "How were you and who diagnosed the chronic Lyme? I’ve been told I may have it,..."
Hey! I was diagnosed with Lymes in 2006 if I remember right. I actually went to a dr for my elbow that I had messed up while removing a ton of old wallpaper. He wasn’t a naturopath or holistic dr, but a friend told me he had a treatment that worked without any drugs. When going over my history he asked if I had Lymes or had ever been tested. Told him no. He wanted to test me and again I told him no. I really didn’t want to deal with anything else. A year later at the urging of my family I got tested. It was positive. He told me we could try antibiotics but that mine was chronic & they probably wouldn’t help. I always wondered if that was the second protein showing high in my blood. I found out later that he was an LLD. Lyme Literate Dr. I’m sorry you can’t get one of your drs to help you out. I have only been able to get one dr to even acknowledge it. Her brothers best friend almost died from it so she had a front row seat to how devastating it can be. Others flat out say they don’t believe in it or like one said…“when I hear hoofbeats I look for horses.” Seriously. My Lyme dr was very good but very expensive. Insurance won’t touch it. I really tried to condense this down so if you have anymore questions that maybe I can help with please let me know.
Wishing you all the best!
Definitely see a hematologist/oncologist re MGUS. Local primary may not take it as seriously, and it is interesting that all Myeloma cases are preceded by MGUS, but not all MGUS converts to Multiple Myeloma. About 1% convert or so I have read. So have it checked at least every year if not 6 months. Better safe than sorry. I did see one trial in the literature that is ongoing that is treating MGUS in the country so stay tuned with that. Recommend keeping up with the literature as the cancer breakthroughs change so rapidly it seems to me. NCI has some good literature but if u have a local medical library that is good.