need a diagnosis

[jacksmommy05]

hello :) for the past month i have been experiencing a number of symptoms: ... [More]

light headedness, severe headaches, joint pains, nausous feeling but not getting sick, no appetite, mood swings, short term memory loss, pain in my left arm at elbow and hand goes numb and right hand joints get so bad cant close my hand. i got blood work done a week ago and have heard from doctor yet.

[JackieCalifornia]

I'm not medically trained, but in your situation, where the doc is saying 'Sorry, can't do anything for you', and knowing that Lyme tests are very inaccurate and most docs wouldn't recognize a case of Lyme if it smacked them in the face, I'd find a Lyme specialist for a work up.

(Among us patients, we call Lyme specialists 'LLMDs', shorthand for 'Lyme Literate MDs', but no doc calls him/herself that.)

How to find an LLMD?  I just search on google for --

new jersey llmd

-- and got some promising leads.  Given where you are in NJ, you should probably also search for surrounding states that you can get to for appointments.

Also try ILADS [dot] org, which is the main (voluntary) group for LLMDs; I understand they have a referral function.  

LymeDiseaseAssociation [dot] org also has a referral function.  It appears to be located in Jackson NJ, but covers other areas too.  This might be a good first stop.

If you don't hit it off with the first LLMD you see, find another, because it's important to have a good relationship with your doc ....

All this seems impossibly complicated now, give how lousy you are feeling, so maybe a friend or relative can help you do the search online.  

Try to get copies of all the tests you have had done since you got sick, and take them with you to your new doc.  That kind of history can be quite valuable.  ALWAYS keep your own copies, tho.  Once test results disappear into a doc's files, getting them all back is very difficult, since doc's staffs don't much like making copies and many don't seem to care whether you get all the copies anyway (bitter experience speaking here).  They are your test results, and you are entitled to have and keep copies.

If it's any consolation, I felt as you are feeling ... I knew something was wrong, couldn't concentrate, couldn't remember anything, and the first 20 docs I saw were clueless.  Finally got myself to an LLMD, and here I am!  Life is good again.  I wish the same for you.

Let us know how we can help, and let us know how you do, okay?  Take care --

[jacksmommy05]

i got all routine blood work done alpng with lymes disease tests and as well as tests for epstein barr. all results were fine but did test positive for epstein barr virus. now what? my doctor says not much can be done basically deal with it. i can barely get out of bed, let alone consentrate at work. i feel like my mind is slipping aaway. my family thinks im exaggrating but i iknow my body and something else has to be wrong. where to go from here? what kind of doctor should i follow up with?

[JackieCalifornia]

Let us know what you were tested for and what the results are ... someone here might have been through the same things.

Take care, keep us posted!

[strikerbird]

Dear Jacksmommy05,
I am not quite sure, since you do not give a clear anaemsis of your problem. However, if you take a far shot, I would not rule out Cushing's syndrome. You may ask your doctor to measure your cortisol level in your blood.
Keep me up to date about your result.
Sincerely,
SB
3rd year med student.