I've been to lots of low hanging fruit farmers, but can't find a real expert
I've seen so many doctors and "specialists" only to keep banging my head against the wall and back to where I began... A recommendation to go to John Hopkins or the Mayo Clinic.
So, I went to John Hopkins and saw a director there, paid $600 out of my own pocket because he didn't accept insurance.. and *poof* - he disappeared. Next, I tried Mayo clinic and sent over my doctor letters of rejection telling me to go to the Mayo Clinic and - No Answer.
Some doctors have simply scratched their heads, ran a few tests within their specific specialty and gave up. Some doctors have just been down right mean and rude with no desire to even give me the time of day. All doctors refuse to go beyond their specific specialty and look at the body as a "whole system", they all acknowledge there is a problem - but don't know what. In the meantime, I live in terror.
It began in 2006 after a trip to the Philippines for work. I was horribly tired and a blood test showed that I had elevated liver enzymes. I began gaining tons of weight, growing hair in places a girl shouldn't, losing my memory and then the heart symptoms started. Out of nowhere my heart for no reason at all will take off like it is on a marathon and I will almost pass out. My doctor at the time told me I was just having panic attacks. It didn't happen very often so I just dealt with it.
Fast forward to September 2010. The Tachycardia became a daily occurrence along with feeling like I couldn't breathe. I started ending up in the hospital, being pulled from my car by the ambulance, ect... It happens whether I'm driving, watching tv, sleeping, shopping, ect... This is where I will give you all the details I have so far.... If anyone can help me and is located in the Arlington, Virginia area - please let me know and I will promptly make an appointment.
Medical History (Current):
- Sporadic Supra Ventricular Tachycardia (preceded by tingling sensations) up to 200+ bpm
- High blood pressure during SVT attacks
- Near fainting during SVT attacks
- Shortness of Breath
- Intolerance to even the slightest exercise or exertion
- Intolerance to heat
- Flushing (turn red on cheeks, palms of hands, legs, ect...)
- Dramatic hair loss on head & thinning of eyebrows
- Hair growth (black & thick) on chin, face & neck (had laser hair removal 2005, but it keeps coming back in new places)
- Weight Gain (cannot lose regardless of how little eaten. Starvation keeps me around 162lbs)
- Lower Abdominal pain on Left side near hip bone
- Upper Chest pain around heart and Left shoulder blade
- Neck Stiffness (side to side movement)
- Persistent sinusitis
- Headaches & Migraines
- Persistent ringing in ears
- Dry itchy skin
- Brittle Nails
- See flashes of lights, starts & blobs of color
- Loss of Memory
- Inability to concentrate & focus... out of it. Forget words and lose train of thought while speaking to people. I’ve
started stuttering and flipping words in the wrong order.
- Explosive Diarrhea & stomach pain after eating a lot of the time
- Thirst & increased Urination
- Vaginal Discharge that won't go away
- Infertility since 2003 after 1 year of no periods
- Painful Acne breakouts on face, back and chest
Abnormal Test Results:
-24 Hour Cortisol, Urine Free
-Normetanephrine Urine (borderline)
-Anticardiolipin Ab, IgM
-Immunoglobulin M, Qn
-Immunoglobulin Kappa & Lambda (Polyclonal Gammopathy)
-Immature Granu %
Abnormal Test Results
-Cortisol Binding Globulin
-Iron Serum & Saturation
-PTT (Partial Thromboplastin Time)
Other recent diagnostic tests performed:
-Wore Holter Event Monitor for 1 month and captured arrhythmia events. Diagnosed as Narrow Complex Arrythmia with Tachycardia & Bradycardia.
-Tachycardia captured on EKGs in Dr's offices and Hospitals and Ambulances
Medical History (Past)
2003 – Diagnosed with suspected Pelvic Inflammatory Disease. Tested negative for all STD’s. Given antibiotics that did not work. Given 2nd round of antibiotics. Finally after 2 months, I could walk upright again and it went away. Periods stopped for 1 year. Went to OBGYN who said “what’s the problem? Be glad”. When I said that it’s not normal, he gave me “the pill” to start my periods again. It worked, but I was infertile after that.
2004 (early) - I started having feelings like I was in a fog. Went to ER and they scanned my brain but found no issues.
2004 (late) – Spontaneously lost 30lbs without trying. Went to OBGYN who told me to “be happy I was losing weight”. Didn’t pursue reason. Also started growing hair on my chin really bad. Plucking it took an hour. Bought laser hair removal sessions.
2006 (Mid) – 1st episode of tachycardia attack while laying in bed watching TV with the flu. I got up to get a glass of water and suddenly my heart took off like it was going to explode. I called the ambulance. EMTs accused me of doing drugs. I had several small attacks throughout the night afterwards. Like aftershocks after an earthquake.
2006 (late) – Stomach started hurting again. Went to OBGYN who said it was “nerves”. Went to emergency room and verified w/ultrasound that it was Appendix. No infection showed up in blood work. Had Appendix taken out.
2006 – Had baseline mammogram done. Also had Mitral Valve Prolapse confirmed by Ultrasound (which has recently been debunked by another ECG).
2007 – Had a job that sent me all over the world (2006-2009). After one particular trip to the Philippines, I was really, really tired. Couldn’t shake it. Went to primary care physician who found that my liver enzymes were elevated. Tested for Glucose tolerance – normal.
2007 – Started suffering from insomnia.
2007 –Started gaining lots of weight. Went to Endocrinologist who said my thyroid levels were normal, but Cortisol was a bit high. Prescribed Levothyroxine.
2007 – Went to a different OBGYN to find out if there might be another reason I was infertile. He ordered an ultrasound of my ovaries and found I had cysts. Told me I might have Polycystic Ovarian Syndrome and prescribed Glumetra.
2007 – Went to OBGYN several more times due to pain in pelvic area. Told that ovarian cysts are just cysts.
2007 – Developed Spondylosis in my neck. Couldn’t move my neck.
2007 – Ability to concentrate was really horrible.
2008 – Had sore throat that wouldn’t go away. Otolaryngologist ordered an acid reflux test. It was negative.
2008 – Still complained that my stomach hurt around the lower sides of my pelvic area. Also suffered sporadic diarrhea about 30 minutes after I ate for the past few years. Primary care referred me to a gastroenterologist who performed a colonoscopy. It was normal.
2008 – Had an extremely horrible episode of tachycardia that lasted for 4 hours during a trip to Scotland. I seriously thought I was going to die in the hotel room.
2008 - Infertility never resolved and still growing hair on face and gaining weight.
2009 (late) – Went to Cairo on business trip. Came back with horrible diarrhea that lasted 3 weeks. Went to primary care physician and asked to be tested for Cryptosporidium. Submitted samples to LabCorp but they messed up the tests. Lab tests of my blood still showed chronically high liver enzymes.
March 2010 – horrible stomach flu after eating at IHOP. Took 2 days for it to go away.
May 2010 – Developed huge red nodule on my neck. Dr said it was probably just a swollen sweat gland. It took 3 months to go away.
August 2010 – Took a plane trip home. As the plane was getting ready to land, I couldn’t breath. I thought there was something wrong with the cabin pressure. I looked around and nobody was showing any signs of anything wrong. I realized it was just me. I used to travel every other week around the world for several years. Why was this happening?
September 2010 – I was on the treadmill. I was simply walking with a small incline and watching a funny movie. All of a sudden, I couldn’t hear and I felt my throat tighten. I looked down at the pulse monitor and I watched it drop from 158 to 60. Then I felt dizzy. Suddenly, my heart took off like it was going to explode. Eventually my heart slowed down.
September 2010 – I flew home. I was not able to breathe and thought we were getting ready to land. I opened the window and saw that we were in mid flight. Then my heart started racing again and I passed out. When I came to, I was really dizzy and my heart started racing again. I got up and went to the back where the stewardesses were and told them that I didn’t feel very good. I was blue. They called for a Doctor on the plane.
I've been having SVT attacks 4 - 5 days a week, multiple times a day since this. I've been pulled from the car by ambulances, a chronic in emergency rooms, multiple hospital admissions & living in constant terror.
A Cardiologist gave me Metoprolol in January to help prevent the SVT from starting (or at least going too far). There is some other underlying condition causing the heart to go into these SVT episodes. There is nothing physically wrong with the heart.
Instead of my heart going over 200+bpm, now it doesn't go over 120bpm. I still experience the same "tingling" sensations before the attack, confusion, panic and "roller coaster" sensations as they try to start.
Countries I’ve been to in past 4 years:
Philippines (includes outlying islands like Cebu)
Recognize the risks associated with Crohn’s disease.
Did you know that one in six US adults has high cholesterol?