Need Help with Dx.

[Guest guest]

Hi Everyone, I know I am in the right place for this & I know that you

all will be able to help me. I will try to keep this as short as

possible and am desperate for your advice:

1999 - 2000: Lyme Dx. Treated for one year on and off oral

antibiotics, I voluntarily stopped taking them and went to a Chinese

Hebalist.

Aug. 06: Arthroscopic knee surgery for constant pain - knee was

clean, cyst removed - for the 8 weeks after surgery, my knee had to be

drained 5 times, at the last draining, Oct. 26, 06, I was hospitalized

for flu like symptoms and the knee drainage color was " off " - all tests

negative or within normal limits except increased sed rate and CRP..

Nov. 06 - back to Lyme specialist for serongative lymes (we

assumed) , many neruo symptoms and tons of body pain. IV antiobiotics

for three months with only resolution of neuro symptoms, not the joint

pain, headaches, etc...Again, I stopped the treatment because I felt I

was getting no further resolution to my symptoms and my insurance did

not cover the IV antibiotics entirely. My bill was skyrocketing.

Several months later seen by Ifectious Disease MD and Neuro, again,

all blood work neg or wnl, they basically implied it was all in my head.

Sept 07, begain to see new GP who did very,very extensive blood

work, my test for sarcoidosis came back slighly elevated which he said

we would watch, RF neg, ANA neg but Rocky Mountain Spotted Fever very,

very, sky high positive. We though we got to the basis of it all. I

have very aggressive antiobiotic treatment for the next 5 months, oral

and IV. My new GP was wonderful about it. Again, the only thing that

didn't completely resolve was the joint pain. He began thinking

Fibro. Referral to Pain Mgmt. and Neuro in April which I haven't seen

yet.

Since being off all the antiobiotics, I have had three episodes

lasting three or more days of flu like symptoms that make me

bedridden. I get a low grade fever at least once weekly. My joint

pain has increased significantly, esp. in my elbows, hands, wrists and

knees, periodically to my lower back and left hip. I cannot get out of

bed in the morning until taking my pain meds and they " kick in " about 1

hour later. I get some swelling in my hands and have recently found a

small, dime sized, nontender lump on the ulna side of my left wrist,

also on my right wrist but not as large. I am currently bedridden

again, third day in a row.

I finally made an appointment for myself with a Rheumy who is

seeing me this coming Tuesday. In my heart, I have always known what

this probably is. I am sure you will all agree with me. What does it

take to get these doctors to diagnose correctly and how much damage

have my joints sustained the past couple of years. How did you all

finally get a diagnoses and how long did it take?

I am a Registered Nurse who finally left my job almost two years

ago because I couldn't do it anymore - too sick, brain fogs, memory

lapses, I just didn't want to take the chance with my patients.

I am sorry this is so long, but I am so looking forward to hearing

all of your opnions.

Kelli in N.Y.