I am really interested in hearing from anyone who has dealt with Lyme disease, especially chronic Lyme, or who has struggled with diagnosis and confusion around whether it's Lyme or something else. What else?
Here is the story:
Dd has been chronically ill for a year now. It started with headaches, then added extreme fatigue, brain fog, trouble concentrating. Then added on orthostatic intolerance, tachycardia, air hunger. Then added on joint pain, both chronic and acute with exertion. Finally added on gut symptoms: gastroparesis, nausea, bloating. Her quality of life is in the toilet and she is getting worse.
First we were told - viral meningitis, she'll be fine in 6 weeks. Then we were told - migraines, take excedrin and do yoga. Then we were told it must be anxiety & depression (She's had a psych eval. It's not that). Now we're being suggested nothing new, we just get each idea we bring to the table shot down. It's been frustrating, to say the least.
We've kind of zeroed in on two possibilities: hypermobile Ehlers-Danlos Syndrome + POTS - but we have no known family history.
Or Lyme disease. She had a known Lyme exposure at age 3, but never had acute Lyme. So if it is Lyme it is chronic, of long duration.
We are now working with a naturopath who is helping us look for answers and will help with symptoms while we search for a diagnosis.
Dd has had chest x-ray, an EKG, and lots of blood work, all normal. Here are her only positive results:
Ferritin - extremely low, even with iron supplementation
Mycoplasma pneumoniae - positive
Lyme - Equivocal. Officially equivocal, which is so frustrating She had a negative result on Kaiser's Lyme screen - EIA. We had a Western Blot done through IgeneX and she has a positive IgM and an equivocal igG. This would indicate a recent exposure, potentially, so doesn't seem to fit with the symptom duration.
Babesia test was negative.
So I'm not sure what to make of this. Her symptoms are consistent with chronic Lyme. Mycoplasma is a common co-infection, apparently. But if she is sick with Lyme it's not a recent exposure. Does anyone have any thoughts or insight to offer? What questions should I be asking? Resources? Articles I can read? Anything?
Thanks in advance.