Hey everyone. My name is Jon. Im brand new to the forums. Im seeking help for my fiance Sarah. Medically she is a mess... We live here in Portland, OR which I now know as the central hub for fibromyalgia "misdiagnosis of Lyme disease". Im sure you are all pretty familiar with the symptoms of fibro and the controversy surrounding it.
Well it is well known that fibro usually develops in adults 40+ but that didn't stop them from diagnosing Sarah when she was 15. While she displays many of the symptoms associated with fibro, some of them are simply from unknown or theorized origins. She competitively rode horses for years when she was younger but had to quit because of her deteriorating health. We don't know for certain if she was ever bit by a tick but do remember that when she was young did have what resembled a ring worm on her shoulder. In hindsight this could have actually been a tick bite. It worse... It finally got so bad that she had to finish high school at PCC because she wasn't able to attend normal school due to her poor health. Many days she couldn't get out of bed. Ever since she was diagnosed, they have pumped her full of everything from seizure medications, pain killers, anti inflammatories, and anything else you could think of. She is currently on a high dose of percocet immatrex and ultram.
The symptoms rapidly change and come and go in cycles of around 3 to 4 weeks it seems. We actually associated some of them with pms, but there are a number of them that are persistent and have been present for years which include severe migraine headaches "which are not directly associated with fibro", sever constant full body muscle pain, pain in her joints, severe back and neck pain which she has to constantly pop and crack, low fever, flu like symptoms such as fever, nausea and diarrhea, fatigue, abdominal cramps that cause her to double over and hyper sensitive hearing. Last one is kinda funny seeing how she used it to her advantage, she is one of the leading record producer/sound engineers in the NW. Unfortunately she has been unable to continue even that due to conflict of the need for long hours and her health. We did also always find it pretty odd that her and alcohol just don't get along. She can only have a drink before she's plowed and then gets a bad headache. The next morning looks like something out of a horror movie lol.
I checked the symptoms list from the lyme disease association's website and these are symptoms she exhibits often and severely at times...
*Persistent swollen glands
*Sore throat
*Fevers
*Sore soles, esp. in the AM
*Joint pain:
Fingers, toes
Ankles, wrists
Knees, elbows
Hips, shoulders
*Joint swelling:
Fingers, toes
Ankles, wrists
Knees, elbows
Hips, shoulders
*Unexplained back pain
*Stiffness of the joints or back
*Muscle pain or cramps
*Obvious muscle weakness
*Confusion, difficulty thinking
Difficulty with concentration,
*reading, problem absorbing
new information
*Word search, name block
*Forgetfulness, poor short
term memory, poor attention
*Speech errors- wrong word,
misspeaking
*Mood swings, irritability,
depression
*Anxiety, panic attacks
*Headache
*Light sensitivity
*Sound sensitivity
*Vision: double, blurry,
floaters
*Ear pain
*Increased motion sickness,
vertigo, spinning
*Off balance, “tippy” feeling
*Lightheadedness,
wooziness, unavoidable
need to sit or lie
*Tingling, numbness, burning
or stabbing sensations,
shooting pains, skin
hypersensitivity
*Dental pain
*Neck creaks and cracks,
stiffness, neck pain
*Fatigue, tired, poor stamina
*Insomnia, fractionated sleep,
*early awakening
*Excessive night time sleep
*Pain in genital area
*Unexplained menstrual
irregularity
*Irritable bladder or bladder
dysfunction
*Queasy stomach or nausea
*Heartburn, stomach pain
*Constipation
*Diarrhea
*Low abdominal pain, cramps
*Chest wall pain or ribs sore
*Head congestion
*Breathlessness, “air hunger”,
unexplained chronic cough
*Night sweats
*Exaggerated symptoms or
worse hangover from alcohol "we actually joke about
this one quite often"
*Symptom flares every 4 wks.
I repeat, these are the symptoms she does have on a regular basis... In fact there were only a total of 13 symptoms on the list that she didn't remember experiencing, and those were along the lines of heart palpitations and loss of hair. So she's been dealing with these for years, remember she was 15 when diagnosed but around 13-14 when she started experiencing symptoms. She said they seemed to come out of nowhere.
Doctors have never actually even mentioned testing for Lyme disease believe it or not. She has been tested for quite a bit else. The most recent test they did showed that she had extremely low vitamin D levels and she has also been "diagnosed" with hypoglycemia via her way out of wack sugar/glucose levels.
The more I research the more freaked out I get. It seems that the systems in Oregon and Washington are utterly doomed when it comes to diagnosing and testing for Lyme disease. It seems nobody will properly test for it and every one want's to simply write it off to Fibro or Chronic Fatigue Syndrome. I know the feeling, I was diagnosed with Touretts Syndrome, ADHD, and OCD when I was young. It took moving to Tampa FL to get that diagnosis.
She's just getting worse, and we are so tired of the non answers.
So what do you guys think? Am I freaking myself out? Is this possibly lyme? Does anyone have advice for how to seek treatment, testing? Any LLMD's in the Portland OR area?
Thanks so much guys.
Jon
Post Edited (JRuff84) : 1/9/2009 10:36:37 PM (GMT-7)