8 years and counting! No diagnosis or any ideas for that matter!!!!!!

Dear jj27, welcome to our family! I am sorry you are suffering without people wanting to help, but please know that you have come to the right place....at least for kind and caring people who will listen when you need them too. If you read my previous post you will know that....I too am waiting and feeling pushed around. Mine has not been going on anywhere close to how long yours has, but please know I understand the frustration! I do not have ideas for you and I am sorry. Hopefully someone will answer soon with some for you, but I just wanted to say welcome and please keep us updated! We do care!

Take care of you!
Beckey

I suggest sitting down with a pen and some paper and think about what was going on in your life when these problems started, and the 6 months to a year before. Did something change like moving into a new place, start a new job, get married, have a child, have a flooded basement or leaky roof, take a big vacation to another state or another country, so on and so forth.

Also think about how they started. Did all the symptoms appear at once or did they come on one by one over the course of a few days, weeks, months, years? What was the first symptom you noticed, the 2nd, 3rd and so on?

Write all of these things down no matter how trivial they may seem. This may provide valuable clues to you and/or your doctor(s) about what is going on, how it started and help get to an accurate DX.

Then start keeping track of the here and now. What do you eat, drink, medications you take (both RX and OTC), what do you do, etc just before your symptoms appear or become worse. The goal here is to find patterns and triggers. When you just think about things you may not see anything important but if you keep a written record of it then things start to become clear and can provide valuable clues as to what is wrong and how to effectively treat it.

It sure makes things hard when one doctor gives up and sends you off
to yet another doctor, this has happened to me a lot over the past few years,
and my current neurologist has stopped looking at all mine and so I'm
having to look for another neurologist...this can be ever so frustrating
but you will eventually get that one doctor that will be able to help...
but then you also have to ask yourself is it worth finding out...cause by
that point you'd have a dx but then sometimes the treatments could be
Harsher than what your already doing and even then is it second guessing...
Sure wish I had a better answer for you....something that oh you have...
Prayers and well wishes to you...
(((((((((((((((((((((((((((((((jj27)))))))))))))))))))))))))))))))))))))
healing hugz

Dear jj,

All of your symptoms match the list of symptoms for Lyme disease and co-infections. I am not a doctor and cannot diagnose you, but would like to provide you with some information that may be helpful. The following is a list of symptoms that have been associated with Lyme disease (from www.anapsid.org/lyme/symptoms/tbi-symptoms.html). Not everyone will experience the same set of symptoms, because Lyme can attack any system in the body, but does different things to different people. Please get tested for Lyme if you have not already been tested! If you were tested and the doctor said your test was negative, please be aware that the current blood tests have a very high rate of false negatives. If you wish to pursue this possibility, you should probably find a Lyme-Literate doctor (aka LLMD in the Lyme community); the Lyme forum here on Healing Well can help you with that.

Good luck!
JoAnn

"short list" of possible Lyme symptoms:

Bladder dysfunction
Burning or stabbing sensations
Cardiac impairment
Change in bowel function
Chest pain
Confusion
Depression
Difficulty thinking
Difficulty with concentration and reading
Difficulty with speech, writing
Difficulty finding words; name blocking
Disorientation: getting lost, going to wrong places
Disturbed sleep: too much, too little, fractionated, early awakening
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
Exaggerated symptoms or worse hangover from alcohol
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Facial paralysis (Bell's palsy)
Fatigue, tiredness, poor stamina
Forgetfulness
Headache
Heart block
Heart murmur
Heart palpitations
Heart valve prolapse
Increased motion sickness
Irritability
Irritable bladder
Joint pain or swelling
Lightheadedness
Mood swings
Muscle pain or cramps
Neck creaks & cracks
Neck stiffness, pain
Numbness
Pelvic pain
Poor attention
Poor balance
Poor short-term memory
Problem absorbing new information
Pulse skips
Rib soreness
Sexual dysfunction or loss of libido
Shooting pains
Shortness of breath; cough
Skin hypersensitivity
Sore throat
Stiffness of the joints or back
Swollen glands
Testicular pain
Tingling
Tremor
Twitching of the face or other muscles
Unavoidable need to sit or lay down
Unexplained breast pain
Unexplained fevers, sweats, chills or flushing
Unexplained hair loss
Unexplained menstrual irregularity'
Unexplained milk production
Unexplained weight loss or gain
Upset Stomach or abdominal pain
Vertigo
Wooziness

P.P.S. Stage III or Chronic Lyme usually requires many many months of antibiotics to make any sort of impact. Most doctors are unwilling to use antibiotics on a long-term basis, which is why you need an LLMD.