swelling around base of neck

[fed up too]

A few years ago, I was told I had lyme disease,and took some sort of antibotics.  Now my base of my neck is very swollen and changes periodically. Its very large on my back, to the point people think I have dowingers disease. Swelling is on both sides in opening near cleavical and in the front below thyroid. My lower jaw is swollen and eye sockets seem swollen near nose.  My doctor had ultrasound done on place near thyroid and said it was just fatty deposit. I don't feel this is correct, because it appeared all of a sudden.  I have had an mri on my neck and it shows that my discs are pushing on spinal fluid and got ephidural shots for pain and pressure.  I also have gone to a neurogolgist , he told me nothing could be done because it wasn't bad enough.  I have severe head pain,my throat feels like its being choked, my skin is getting so thin when I brush it against something I get like blood blisters under the skin. My joints and lower back hurt constantly. My eyeballs hurt when I move my eyes,I can feel the out line of my eyeballs. but no vision loss.  ears fell like Ihave ear infection and pressure and they say they are fine.  I have gained 40lbs in my trunk area in the last year. I know something is wrong I feel so tired and listless  and used to be a very active person. I can't sleep without pills and have rls.  I am depressed and no longer want to do anything. I don't know what to do or what kind of doctor to see.  Every doctor doesn't really see the whole picture because others don't forward all the info.  Please advise me.

[frustrated3]

Odd.. My daughter was bit by a lyme tick when she was 8, while on vacation in Northern Iowa.   Sadly doctors didn't know how to treat it when we came back to Colorodo.  It became disseminated disease, but she was finally considered Lyme-free at age 12. We then discovered she had Graves disease and she has been on meds of and on for 5 years to normalize her thyroid levels.  Even though her thyroid tissue is abnormal and she has a nodule that we're watching her thyroid levels are in normal range right now, so they won't ablate or remove it until she comes out of remission.  Now I am noticing a bulge at the base of the back of her neck.  It has a perimeter about the size of a plum but is only slightly raised, but noticable.  She is in her senior year of H.S. and we've had to homebound school her because of debilitating fatique.  She also has cronic ear pain and throat pain that can come on rather suddenly, that we are scheduled to see an ear, nose and throat guy about...whew.... anyhow all these blogs add up for us, but what does it mean?........Anyone????

[smeb]

I have had similar symptoms.  Today  is a day with pain in my ear.  Sharp shooting pains similar but different than an ear ache.   Don't give up.  Look for a Lyme literate experienced health care provider to treat you.

[scarlet37]

You need to have a second opinion on your thyroid.  Lyme has many of the same symptoms as thyroid disease. I too thought I had lyme because I live in an epidemic area however it turned out to be the nodules on my thyroid were causing my thyroid to be overworked.  I'm not saying this isn't lyme in anyway just another avenue to investigate.

[cave76]

Ditto on what tory said.

Until you see a llmd (Lyme Literate Medical Doctor--- acronym)  and has him or her investigate whether or not you have Lyme or another tick borne disease, you won't know if it's Lyme or something else.

Get a copy of that test result that prompted the diagnosis of Lyme, if you can.

Lyme is NOT an easy disease to diagnose or 'cure'. And a few weeks of antibiotics certainly won't do it.

But, if you get the proper help, long term antibiotics may.

Be sure you are checked out for other illnesses also. Lyme is an imitator. IOW it can  present at almost anything, thereby leading to many mis-diagnoses.

[tory2457]

Lyme disease isn't very easily cured.

If you were told you "had" lyme a few years ago and only took a few antibiotics; you might want to find a doctor who specializes in TBI's Tick Borne Illnesses- or Lyme Literate Doctors.

google lyme and try lymenetdotorg.

I don't believe there isn't a reason to "why" we don't feel well. All in our heads imo is what doctors say when they don't have a clue what's wrong.

Find a doctor to help you get well.