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Please help with diagnosis.

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Chronic Fatigue Syndrome
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Posted 7/31/2014 1:15 AM (GMT 0)
Hi everyone, so I have been having ongoing problems for the past 4+ years now. Started with knee pain and has now worked itself up to chronic widespread pain, severe fatigue, muscle weakness, constipation, diarrhea, nausea, breathlessness, headaches, sun sensitivity, salt cravings, dizziness, joint pain, trouble concentrating, burning in my right forearm, cold feet, night sweats, chest\rib pain, pins/needles in legs, anxiety, irritability and irregular menstrual cycles. I am 16 years old and otherwise healthy.
Today my dr prescribed an inhaler (ventolin) to take before exercise as well as a 24 hour urine sample. The sample is to test me cortisol and VMA levels. I heard that VMA levels are used to test for neuroblastomas?? Any idea what this could be and WHY he would have ordered this test?? I have yet to see any specialists because he doesn't think there is anything wrong to me so won't refer me to anyone else. Please help
Posted 7/31/2014 12:53 PM (GMT 0)
I would ask for a lyme test as well as ruling out autoimmune issues.
Sometimes lyme tests aren't reliable and you have to consult with a lyme literate doctor who will order special testing. Lots of doctors will insist it's not lyme, so I would just get my blood tested through IGENEX. I would perhaps ask for a brain MRI, just to rule out stuff. Maybe seek a rheumatologist opinion as well.

It's hard to separate out cfs and lyme I think, you just have to make sure the underlying cause isn't a chronic lyme infection.

Sometimes with cfs your body just crashes and it takes a while to recover.

Did you have a trigger that started all this? Sometimes it's helpful to know what got all thus started it can help with the diagnosis. Like did you go camping or have a car accident, stuff like that..
Posted 7/31/2014 2:27 PM (GMT 0)
Hello louise74. Thanks for answering my questions. I have mentioned chronic lyme before, but my doctor said it is very rare where I live (west coast of British Columbia Canada) and refuses to test me. Closest llmd is over 6 hours away and my mom won't take me. I have been tested for lupus, arthritis and other autoimmune disorders and all the tests came back negative. Before this all started, I did go camping and hiking a lot. I can't remember any exact trigger as to what started it all. I just remember it started just after my 12th birthday(in the spring).
Posted 7/31/2014 10:42 PM (GMT 0)
You have too much going on for a 16 year old, I don't know how yo deal with it, I wish you peace and healing. I don't know but if you are an avid hiker or camper I would say that lyme is possible, but I'm just guessing.

You could ask your mom to order books such as healing lyme (Buhner) and try an at home protocol. Maybe there are others from Canada you could reach out too.

I don't know, so many of these illnesses are tricky and overlap each other. Don't let people think you are crazy, you know your body.

While waiting for a diagnosis, you could look into simple things to detox your lifestyle and your body, avoid stress, and do your best yo eat well if you can.

You could ask your mom to take you o a homeopathic doc or natropaths but they are expensive.

I hope you find an answer.
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