Dr's have no idea...hoping someone has ideas

Posted by shaymelt @shaymelt, Sep 17, 2018

2 weeks + very fatigued. sept 13th awoke with pain in forehead…felt like i was hit with a baseball bat. As the day went on pain moved to eye socket and top of head ONLY on left side. Discovered large lymph nodes, they are hard and fixed and very large. Pain in head is constant for that quadrant of my head. It had sharp pains that feel like a knife stabbing in one section. I went to the ER. Had CT scan. Could see the large nodes but no tumor in head etc. No infection in nose, eyes, ears. We did a spinal tap to rule out brain bleed, meningitis, etc. Fluid was clear. Sent off labs for Lyme meningitis, and also waiting on blood lyme test. (on side note I have chronic lyme that flares up 2 weeks a year, spring and fall when the season changes…this feels nothing like my lyme…no chronic muscle joint pain, no arthritis). Sent home with doxy and pain pills. Today is 4 full days of antibiotics. I was told by 2-3 days I should feel better and lumps should be smaller. I am not better….the pain is a little less severe and to touch my face is less painful but brain pain is the same when I have the sharp pains. Lymph nodes are still very large. I also have new lumps that are barely visible but I can feel them on my face near the hairline. My SIL is a dr and she said she has never seen two different zones with lymph nodes hard and large like this. I was in the alps hiking the tour du mont blanc in early august. No bugs there but could have had a tick bite. I have been laying in bed for days because of the head pain so it is debilitating. Thank you for any help you can give.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

@shaemelt I'm so sorry your experience these symptoms I don't know what that could be if not bites what about allergies? I would suggest you go to Mayo clinic if you have one near you or a university hospital .


Hello @shaymelt, welcome to Connect. I'm sorry you are in pain and having trouble getting a diagnosis. I'm hoping some members who have similar health conditions can share some suggestions. Mayo Clinic has some information on swollen lymph nodes on their website here that discusses symptoms similar to your description:

Swollen Lymph Nodes:

I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.


Please sign in or register to post a reply.
  Request Appointment