Join Date: Jan 2005
Location: Central NY
Over 20 years to a diagnosis
I was diagnosed 20 years ago with Chronic Fatigue Syndrome, sudden fatigue, sore throat, sinusitis, treated with antibiotics which I reacted severely too, hospitalized with laryngeal edema and put on Prednisione for 6 weeks.
Once off prednisone developed "weird" and ever changing symptoms, migrating joint pain, severe headaches, bronchospasm, bowel problems.
No answer from primary doc so went to a well known Environmental Allergist who didn't believe in labeling patients with a diagnosis but did help me with diet, supplements and allergy shots. I did ok for the next 15 years, did what they recommended for chronic fatigue, never did go back to work full time but was able to work per diem as a RN and do ok, also raised two children. Aches and pains always present but not disabling. Easy fatigue if I "misbehaved" so I learned how to recognize when I had overdone something and did ok.
In 2001 developed sudden onset of back muscle spasms, no injury.
2004 sudden left knee effusion and pain, no known injury, then developed raised red "bumps" in different areas of my body, not painful, not purulent but would stay for months
then fade but show up elsewhere, usually in an area that was experiencing muscle soreness at that time.
The ortho doc I saw suspected Lyme, did the standard ELISA test which was negative. Felt I should see a Rhematologist, the Rheumotologist did no further testing and pronounced my condition "Fibromyalgia" . Since I was so sensitive to medications he had nothing to offer me.
Then fatigue set in, with muscle cramping and fatigue getting so bad I could no longer work BUT I was diagnosed with an adrenal gland tumor, Conn's sydrome, which was causing uncontrollable hypertension and low blood potassium. My symptoms were explained away by that.
I had a left adrenalectomy in the fall of 2006 and did feel remarkably better for a while, went back to work, travelled
until I got a virus December 2007. I then developed all the symptoms I had in 1988 and more. I developed the total brain fog, insomnia,anorexia and nausea, irritability, sound sensitivity, couldn't put a sentence together, had uncontrollable muscle tremors, went to the ER twice in January 2008, then to my primary and was dismissed with no answers.
I then saw, ENT, Allergist, GYN, Nephrologist with no reason found for my symptoms except the ENT wanted to do surgery to correct "possible" defects in my nose. I fortunately got a second opinion, there was nothing to operate on, it was rhinitis, not sinusitis and there were no structural defects. Cause of nasal inflammation unknown.
Remained severely ill until Sept 08 after seeing an integrative, holistic MD. After extensive testing he diagnosed the Lyme Disease. I will be needing to start antibiotics but begged off until after the holidays, I am doing better than I have most of the year with supplements, diet, exercise, rest, and other alternative therapies. By some fate I was guided to seek his help, he is a LLMD, I had no idea what all that meant until two weeks ago.
I am not looking forward to the possible die-off symptoms the antibiotics can cause. Now wonder if my antibiotic "allergies" of 1988 were really die off then.
I never had a visable bulls-eye rash and never knew of a tick bite. My local health department still says I am not in a high risk Lyme area. That is because no local doctor looks for it!