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Teenage Girl with an Array of Symptoms
To begin, I'm 5'4'' and 108 lbs (normal weight) and I have been diagnosed with Fibromyalgia. I currently take 10 mg of Elavil to treat this. I've had the majority of these symptoms for about 4 years, though the severity has increased with time.
I experience:
- widespread pain/weakening: arms, legs, and hands
- recent pain in my eye (dull, achy, or stinging), naval, and occasionally left or right upper abdomen
- post nasal drip: mucus thickens w/ certain foods (have not committed to identifying specifics, but apple juice and donuts come to mind)
- recent burning sensation in lips, face (w/ and w/o food to trigger)
- fatigue (even w/ 10 hrs of sleep)
- brain fog, difficulty concentrating
- occasional tremors
- severe mood swings (w/i a day)
- dehydration
- cold hands and feet
- pins and needles: face, hands, toes, legs
It's unlikely that blood sugar issues are at play; I've checked with glucomoter (random, fasting, 2 hrs after a meal). Stress from academic pressure and family conflicts exacerbates the symptoms, but these symptoms persist in the absence of stress.
Any help would be so, so very much appreciated! Please reply, and TIA!
I experience:
- widespread pain/weakening: arms, legs, and hands
- recent pain in my eye (dull, achy, or stinging), naval, and occasionally left or right upper abdomen
- post nasal drip: mucus thickens w/ certain foods (have not committed to identifying specifics, but apple juice and donuts come to mind)
- recent burning sensation in lips, face (w/ and w/o food to trigger)
- fatigue (even w/ 10 hrs of sleep)
- brain fog, difficulty concentrating
- occasional tremors
- severe mood swings (w/i a day)
- dehydration
- cold hands and feet
- pins and needles: face, hands, toes, legs
It's unlikely that blood sugar issues are at play; I've checked with glucomoter (random, fasting, 2 hrs after a meal). Stress from academic pressure and family conflicts exacerbates the symptoms, but these symptoms persist in the absence of stress.
Any help would be so, so very much appreciated! Please reply, and TIA!
Thanks, Ricobord. I'm familiar w/ Lyme Disease, and I have a doctors appointment Monday, so I'll request a test. I'm not sure if my doctor is "lyme disease literate" (as I've read). Do you agree that the best course of action is high doses of antibiotics, if diagnosed? Previously, I was prescribed 500mg of Amoxicillin...I remember feeling pretty terrible and getting sick, maybe that's expected. Thanks again for your reply; it really does mean a lot!
Oh, and I live in a suburb outside of Cleveland, Ohio. I sometimes play in the woods.
Yes, you definitey have Lyme Disease in Ohio. And you are at risk having been in the woods.
Yes, high doses of antibiotics are the usual treatment. Amoxicillin does work against Lyme, but you would need it for months given that you have disseminated Lyme. In many people, antibiotics can cause a herxheimer reaction that can make you feel worse. Some think this means you should stop the meds, but as long as it's not an allergic reaction, you'll soon see improvement. Late stage Lyme often requires IV antibiotics.
There is a controversy in the medical community. Most infectious disease doctors and many neurologists and rheumatologists take the view that Lyme is well defined and limited. Doctors have been taught to look for a bulls eye rash and swollen knees. But many people don't get those symptoms. They get different ones. You could have any combination of the symptoms in that document. This is part of why Lyme can be tricky to diagnose. It mimics many other conditions and diseases and you don't want to get misdiagnosed. For example, giving someone Abx for an autoimmune disprder will not help at all. But giving immunosuppressants to a Lyme patient can be devastating.
There is a group of doctors who have formed an organization called ILADS. They take a broader view of Lyme, saying that some people have false negative tests (like I did), have more neurological symptoms than previously believed, and need more than a month's worth of antibiotics to cure it. We patients call these doctors LLMDs, Lyme Literate Medical Doctors.
Your first step would be to talk to your doctor and ask him/her to order blood tests for you. Unfortunately, the CDC two tier testing protocol is contradictory. They say to only run the Western Blot if the screening test is positive. But then they say that a negative does not exclude Lyme. Ask your doctor if he'd be willing to order the Western Blot regardless of the result on the screening test (either an ELISA or an IFA) because the WB is more useful. Another test that many doctors are unaware of is the CD57. Only HIV and Lyme can lower this particular immune cell count. It can help with a diagnosis either way.
I hope this is helpful!
Yes, high doses of antibiotics are the usual treatment. Amoxicillin does work against Lyme, but you would need it for months given that you have disseminated Lyme. In many people, antibiotics can cause a herxheimer reaction that can make you feel worse. Some think this means you should stop the meds, but as long as it's not an allergic reaction, you'll soon see improvement. Late stage Lyme often requires IV antibiotics.
There is a controversy in the medical community. Most infectious disease doctors and many neurologists and rheumatologists take the view that Lyme is well defined and limited. Doctors have been taught to look for a bulls eye rash and swollen knees. But many people don't get those symptoms. They get different ones. You could have any combination of the symptoms in that document. This is part of why Lyme can be tricky to diagnose. It mimics many other conditions and diseases and you don't want to get misdiagnosed. For example, giving someone Abx for an autoimmune disprder will not help at all. But giving immunosuppressants to a Lyme patient can be devastating.
There is a group of doctors who have formed an organization called ILADS. They take a broader view of Lyme, saying that some people have false negative tests (like I did), have more neurological symptoms than previously believed, and need more than a month's worth of antibiotics to cure it. We patients call these doctors LLMDs, Lyme Literate Medical Doctors.
Your first step would be to talk to your doctor and ask him/her to order blood tests for you. Unfortunately, the CDC two tier testing protocol is contradictory. They say to only run the Western Blot if the screening test is positive. But then they say that a negative does not exclude Lyme. Ask your doctor if he'd be willing to order the Western Blot regardless of the result on the screening test (either an ELISA or an IFA) because the WB is more useful. Another test that many doctors are unaware of is the CD57. Only HIV and Lyme can lower this particular immune cell count. It can help with a diagnosis either way.
I hope this is helpful!
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There is a good overview in thIs document. Read it and see if you think it describes your experiences. Everyone with Lyme has their own constellation of symptoms so no two patients are exactly alike. You could also do some research on Lyme in children as often children present differently with it than adults do. If you think it is possible, you could show this to your parents. You could ask your doctor for blood tests to see if you have antibodies, but also know the CDC says you can't exclude Lyme with a negative blood test.
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
I hope this is helpful.