Looking for answers

[KTM377]

Hi, I am a 26-year-old female and becoming desperate.  A couple years ago I discovered that I had a brain-stem lesion after getting an MRI due to intense headaches I was experiencing.  The neurologists I was seeing said that it probably is not a tumor since I had no other real neurological symptoms.  After a couple of years the lesion still has not grown.  A rheumatologist marked it up as vasculitis...
What is just as disturbing to me is the chronic pain I have throughout my body.  I have always had a high pain tolerance but over the past couple years my body feels like one big bruise.  I have pain to the touch on my arms, legs, hips, back (shoulders, lower back, and some areas along the spine).  Most recently, my hands go numb occasionally; it feels similar to if you fall asleep on your arm.
I am very tired of the constant doctor's visits; I was seeing four different doctors over the past couple of years and a diagnosis never got any closer; they would just prescribe me more medication to combat the headahes and 'muscle' pain.

[JackieCalifornia]

Greetings.  May I suggest that you request copies of ALL your past test reports from your doctors, so that you have your own file?  It is very helpful to take to another doctor at the point that you may decide to do that.  The office may groan and quibble, but just keep after them.  I have to do the same thing and follow up over and over.  It's a drag.

Speciality drs are like the old tale of the blind men and the elephant ... how they describe the elephant depends on which part they are touching.  Rheumatologists think everything is rheumy-related and don't tend to know much about infectious disease.  Infectious disease docs don't think much of Lyme or its coinfections as a big problem for all kinds of reasons.  

Like many here, I bounced around through a couple dozen MDs (neurologist, internists, infectious disease dr, endocrinologists, ENTs, emergency rooms, you name it) before taking myself and my thick folders of test results to an LLMD as a last resort, and finally things came in to focus when the LLMD could see links in the reports that were meaningless to the other doctors.  

If you turn out NOT to have Lyme or a coinfection (that is, disease(s) carried by the same ticks that have Lyme), you may be able to get some guidance on who to see next -- LLMDs take a broader view on things, in my experience and understanding, and may be able to send you in a more productive direction.

Bottom line:  what have you got to lose?  Above all, don't give up ... and sometimes that is the hardest thing.  Or second hardest thing, after being so sick.  Come visit with us when you like.  It helps me know I'm not alone with this thing.

If you need help finding an LLMD, let us know what state or area you live in.

[patsy10]

I would ask your doctor if you have been tested.  If not, you could request that the test be run.

[KTM377]

Thank you both for your responses.  I had been seeing a rheumatologist and he did not see all that concerned about what could be causing the pain; he just prescribed medication and physical therapy.  I am not sure all that I have been tested for; all I know is that they are taking vials and vials of blood...
I believe he checked for various antibodies which really brought up no conclusions; they also took general chem labs to look at thyroid etc; so, I do not know if I have been tested for Lyme; is there a certain antibody that indicates someone has Lyme?
I have not had any rashes.

[patsy10]

I also know how frustrating this is.  Have you been tested for lyme or have you had any strange rashes?

[Amyloo]

Hi and welcome.  I know how frustrating this process can be.  Can you post a little about what has or has not been tested for?  Have  you seen a rheumatologist for your body pain?