"Have you found the underlying condition that caused your SIBO in the first place? If not,I'd continue searching because, more often than not, if you don't fix the initial problem it'll just keep coming back no matter how much treatment y..."
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My scars tell a story. They are a reminder of times when life tried to break me, but failed. They are markings of where the structure of my character was welded.
About Me: Female, 39, colorado springs, CO, member since Jul 2014
I have been suffering from both a chronic and mysterious disease almost my entire life. At various times during the course of my illness, I turned to the medical community to find out why I had been sick on and off for so long. No doctor could ever explain it. I’d go fr
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om one specialist to another, hoping to secure answers, but those answers never did come.
Along the way, I started to notice a trend.
When my primary care doctor had no idea what to do with me, I’d get sent to a specialist. They’d only order a handful of labs and/or tests (if any at all). Inevitably, my tests always came back normal. The doctor would give up on the idea of a diagnosis after only a few visits because whatever I had did not provide them with an easy diagnosis. I’d eventually get turned away. Instead of getting answers – they gave me the blame.
“It must be anxiety or depression”
“She doesn’t want to go to school”
“She’s just lazy”
“She’s just be dramatic”
“She just wants attention”
“She’s just looking for drugs”
“It’s all in her head”
I WAS BEING VICTIM SHAMED BY MY OWN DOCTORS.
It happened when my parents took me to get help as a young child. Again when I was a teenager. During another period in my early twenties. Now finally, over the last five years for which I had been actively searching for a diagnosis.
I wasn’t going to let it happen again.
I knew when I wrote the letter to the hospital, with my health rapidly declining, that this was going to be my chance of finding my diagnosis. I obviously didn’t want to mess this up, so I had to do research, find good doctors, and learn to navigate the health system strategically – all on my own. I also knew I had to share my journey because what I had experienced through the medical system over the years was clearly wrong and I didn’t want anyone else to be left behind. You can follow my story at https://undiagnosedwarrior.wordpress.com [Less]
Along the way, I started to notice a trend.
When my primary care doctor had no idea what to do with me, I’d get sent to a specialist. They’d only order a handful of labs and/or tests (if any at all). Inevitably, my tests always came back normal. The doctor would give up on the idea of a diagnosis after only a few visits because whatever I had did not provide them with an easy diagnosis. I’d eventually get turned away. Instead of getting answers – they gave me the blame.
“It must be anxiety or depression”
“She doesn’t want to go to school”
“She’s just lazy”
“She’s just be dramatic”
“She just wants attention”
“She’s just looking for drugs”
“It’s all in her head”
I WAS BEING VICTIM SHAMED BY MY OWN DOCTORS.
It happened when my parents took me to get help as a young child. Again when I was a teenager. During another period in my early twenties. Now finally, over the last five years for which I had been actively searching for a diagnosis.
I wasn’t going to let it happen again.
I knew when I wrote the letter to the hospital, with my health rapidly declining, that this was going to be my chance of finding my diagnosis. I obviously didn’t want to mess this up, so I had to do research, find good doctors, and learn to navigate the health system strategically – all on my own. I also knew I had to share my journey because what I had experienced through the medical system over the years was clearly wrong and I didn’t want anyone else to be left behind. You can follow my story at https://undiagnosedwarrior.wordpress.com [Less]
Interests:
Allergies, autoimmune disease, Digestive Health, emotional health, ADD/ADHD, Anxiety, pet health, Dogs, Other Pets, Sleep disorders, Insomnia, infections, Heart Health
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, arrhythmias, Heart Disease, alternative medicine, Asthma, Depression, Genetics, Kidney Disorders, Migraines, Nutrition, Pain, Chronic Pain, Headache, cats, veterinary medicine, Undiagnosed/Unusual, undiagnosed syptoms, Undiagnosed Illness, superior mesenteric arterty, rare disorders, Rare Diseases, Nutcracker syndrome, may-thurner syndrome, pelvic congestion syndrome, dysautonomic, Dysautonomia, POTS (Dysautonomia), HyperAdrenergic POTS, Ventricular Tachycardia, Paroxysmal supraventricular tachycardia, pericardial effusion, undiagnosed Autoimmune disease, alopecia, livedo reticularis, nevus anemicus, Irritable Bowel Syndrome, malnutrition, sibo, small intestinal bacteria, Small bowel bacterial overgrowth, Allergy, anaphalaxis, Malignant Hyperthermia, hypoxemia, patient advocacy, psychology, neuroscience, neuropsychology, medical research, autonomic disorder, chronic nausea, National invisible illness weeness, spoonie, living with chronic illness, undiagnosed warrior, Coffee, humor, transposition great arteries, esophagoduodenostomy, medical testing, Sinus Surgery, opacification, fetal abnormalities, hereditary condition, mystery diagnosis, mystery illness, Crohn's, Back pain, Skin conditions, mast cell activation disorder
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Jul 26, 2014
"did you ever follow up? just curious as i`ve had similar symptoms and normal results, but no real diagnosis."
Jul 25, 2014
"I have not taken those two meds or any other treatment for those conditions.
I also haven't been to a chiropractor in about 4 years, but did go for a short period following a few months of back pain that I associated from sitting at wo..."
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