Discussions By Condition: I cannot get a diagnosis.

I need a doctor who isn't a low hanging fruit farmer

Posted In: I cannot get a diagnosis. 13 Replies
  • Posted By: acronymforme
  • April 7, 2011
  • 03:20 AM

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):

Symptoms:
- Sporadic Supra Ventricular Tachycardia (preceded by tingling sensations) up to 200+ bpm
- High blood pressure during SVT attacks
- Near fainting during SVT attacks
- Palpitations
- 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
- Insomnia
- 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.
- Irritability
- Tiredness
- Nausea
- Diarrhea/Constipation
- 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:
Consistently Elevated:
-24 Hour Cortisol, Urine Free
-Normetanephrine Urine (borderline)
-AST
-ALT
-DHEA
-DHEA-s
-Cholesterol
-LDL
-Carbon Dioxide
-Sedimentation Rate
-Anticardiolipin Ab, IgM
-Immunoglobulin M, Qn
-Immunoglobulin Kappa & Lambda (Polyclonal Gammopathy)
-Glucose
-Bun/Creatinine Ratio
-RDW
-Immature Granu %
-UIBC
-Monocytes
-WBC

Abnormal Test Results
Consistently Low:
-Cortisol Binding Globulin
-Ferritin
-Iron Serum & Saturation
-Aldosterone
-Androstenedione
-Vitamin D
-PTT (Partial Thromboplastin Time)
-Bilirubin
-MCH
-MCV
-Creatinine
-INR
-Lymphocyte
-Hemoglobin
-Hematocrit
-Magnesium


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:
Scotland
England
Ireland
Cairo, Egypt
Philippines (includes outlying islands like Cebu)
Costa Rica
Denmark
Netherlands

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13 Replies:

  • I am not a doctor and it's a long shot, but have they ruled out pheochromocytoma?
    Felsen 510 Replies Flag this Response
  • I am not a doctor and it's a long shot, but have they ruled out pheochromocytoma?Yes, Pheocromocytoma has been ruled out. Seretonin tests (urine & blood) all came back normal. 24 hour Catchecolamine urine catch came back normal. I've only been tested for these things through my own research and twisting the doctor's arm.I begged my PCP doctor in D.C. for a PET w/CT but he refused, instead he ordered a chin to pelvis CT scan w/contrast - I had it done at a local hospital and it came back normal. So I asked the Dr. at John Hopkins that I saw once to order an Octreotide scan. I had it done at the same local hospital the chin - pelvis CT scan was performed. On day 3 of the Octreotide scan, I still had activity lighting up on the Liver and kidneys. The Octreotide is flushed out of the kidneys, so that is normal, but the Liver was still lit up in one of the upper corners. They performed a 3d Cat scan of the Liver area to accompany the Octreotide scan. The Doctor who reviews all the radiology films compared the Octreotide scan to the Chin - Pelvis CT scan I'd had done 2 months prior and stated that there were no differences from the previous CT scan they had on file and attributed the activity in the Liver to "normal metabolic processing".What has me worried about this is, I have cysts on my ovaries, but the previous chin-neck CT scan stated that I did not have any. They also failed to see the lump I have on my left carotid artery in my neck. So, what if the Doctor at the local hospital outpatient radiology department reviewing that initial chin-neck CT scan missed something? What if he just got off the phone in a fight with his wife? Thinking about lunch? Overworked, underpaid and just doesn't give a ***n about work anymore? Maybe it was the 150th scan he'd looked at that day and was tired... That means that anything using that initial chin-neck CT scan as a guideline would be wrong as well.I gathered copies of the chin-neck CT and Octreotide scan on CD from the hospital and sent them to the doctor I saw once at John Hopkins a few weeks ago. I am still waiting for a 2nd opinion... In the mean time, I went to an Endocrinologist (why are all the wait times for doctors 1 month or more? no wonder people don't get the help they need before they become terminal!) She was a complete b***h!! She had me diagnosed as wasting her time before I'd even entered the waiting room. She snickered at me as I rattled off my symptoms and showed her all my test results. She wasn't interested in any of the cardiology records and told me she didn't think there was anything wrong with me. I had to almost get into a fight with her to get her to order any type of test. She ordered a serum Cortisol test and that's it. She acted like she was doing me a favor at that!After that hellish visit, I called my PCP in Florida and told him my experience. He ordered the tests she should have. This is how we found out about the Metenephrines, elevated Urine Cortisol, Sedimentation rate & some other things. The mean woman Endocrinologist in D.C. called me when she got the lab results and said "WELL... the test I ordered came back normal as I thought... but I have some other test results that came back abnormal but I didn't order them so you'll have to follow up with the doctor that did." That was the end of that discussion. If she didn't order the test, it didn't exist or count and she wasn't interested in looking at them. I never want to see her again.I made an appointment with another endocrinologist in the D.C. area. After another month of waiting, I sent him all my test results days before my appointment and he had his nurse call me back to tell me that he had no interest in seeing me and suggested I pursue my problem with John Hopkins or Mayo Clinic. I never told him that I'd seen anyone at John Hopkins. He just refused to see me.. no explanation. Maybe he was friends with the female endocrinologist witch.So, now I'm back to where I left off... waiting for someone at John Hopkins to follow up with me. I've been waiting for months and gotten nowhere... I'm not getting any better, in fact i'm getting worse and the Metoprolol is starting to not work anymore. Why is it so hard to get help? The test results don't lie... hook me up to an EKG and see it for yourself! I'll submit to any test just to end this horror!I've been suffering from this since last August... That's 9 months! The reason this is stretched out plain and simple are appointment and response times plus competence. Why do all appointments have to be on a month - 2 month basis? Then it takes months to get a follow up - if at all. Then there's the whole other issue of hand washing handoffs and no one willing to look beyond their specific area of specialty, but even the GPs and internal medicine doctors don't have broad enough knowledge to tie it together. It seems to be systemic throughout the entire medical field from what I'm experiencing. How are people ever diagnosed early enough to be successfully treated with these types of timelines and lack of response or follow through? Isn't there anyone who covers the whole body and can tie the systems and tests and symptoms together without bouncing me around and making me wait months to hear: "oh, that's not my area, you'll have to find someone else." ?Maybe I should go to medical school. It can't be that hard to learn to provide this level of care, or more accurately - no care. I can pass the buck all day long too, it would be great to get paid for it though! It's the labs that do all the work, the doctors only need to read the reports - if they chose to - if they understand fully what they're reading. Heck, from what I've experienced so far even that doesn't even have to be acknowledged or understood. But wait, can you trust the lab report?? LabCorp messed up loads of my tests and there's a question of doubt looming around the CT and Octreotide scan... If this is the state of medicine today, we are all doomed and should just crawl up in a ball in our bedrooms and wait to die. I'd give anything to find a competent doctor that can figure this out and not make me wait 2 months for an appointment or pass me onto someone else to wait another 2 months and pass me onto someone else....
    acronymforme 6 Replies Flag this Response
  • I am not a doctor and it's a long shot, but have they ruled out pheochromocytoma?Yes, Pheocromocytoma has been ruled out. Seretonin tests (urine & blood) all came back normal. 24 hour Catchecolamine urine catch came back normal. I've only been tested for these things through my own research and twisting the doctor's arm.I begged my PCP doctor in D.C. for a PET w/CT but he refused, instead he ordered a chin to pelvis CT scan w/contrast - I had it done at a local hospital and it came back normal. So I asked the Dr. at John Hopkins that I saw once to order an Octreotide scan. I had it done at the same local hospital the chin - pelvis CT scan was performed. On day 3 of the Octreotide scan, I still had activity lighting up on the Liver and kidneys. The Octreotide is flushed out of the kidneys, so that is normal, but the Liver was still lit up in one of the upper corners. They performed a 3d Cat scan of the Liver area to accompany the Octreotide scan. The Doctor who reviews all the radiology films compared the Octreotide scan to the Chin - Pelvis CT scan I'd had done 2 months prior and stated that there were no differences from the previous CT scan they had on file and attributed the activity in the Liver to "normal metabolic processing".What has me worried about this is, I have cysts on my ovaries, but the previous chin-neck CT scan stated that I did not have any. They also failed to see the lump I have on my left carotid artery in my neck. So, what if the Doctor at the local hospital outpatient radiology department reviewing that initial chin-neck CT scan missed something? What if he just got off the phone in a fight with his wife? Thinking about lunch? Overworked, underpaid and just doesn't give a ***n about work anymore? Maybe it was the 150th scan he'd looked at that day and was tired... That means that anything using that initial chin-neck CT scan as a guideline would be wrong as well.I gathered copies of the chin-neck CT and Octreotide scan on CD from the hospital and sent them to the doctor I saw once at John Hopkins a few weeks ago. I am still waiting for a 2nd opinion... In the mean time, I went to an Endocrinologist (why are all the wait times for doctors 1 month or more? no wonder people don't get the help they need before they become terminal!) She was a complete b***h!! She had me diagnosed as wasting her time before I'd even entered the waiting room. She snickered at me as I rattled off my symptoms and showed her all my test results. She wasn't interested in any of the cardiology records and told me she didn't think there was anything wrong with me. I had to almost get into a fight with her to get her to order any type of test. She ordered a serum Cortisol test and that's it. She acted like she was doing me a favor at that!After that hellish visit, I called my PCP in Florida and told him my experience. He ordered the tests she should have. This is how we found out about the Metenephrines, elevated Urine Cortisol, Sedimentation rate & some other things. The mean woman Endocrinologist in D.C. called me when she got the lab results and said "WELL... the test I ordered came back normal as I thought... but I have some other test results that came back abnormal but I didn't order them so you'll have to follow up with the doctor that did." That was the end of that discussion. If she didn't order the test, it didn't exist or count and she wasn't interested in looking at them. I never want to see her again.I made an appointment with another endocrinologist in the D.C. area. After another month of waiting, I sent him all my test results days before my appointment and he had his nurse call me back to tell me that he had no interest in seeing me and suggested I pursue my problem with John Hopkins or Mayo Clinic. I never told him that I'd seen anyone at John Hopkins. He just refused to see me.. no explanation. Maybe he was friends with the female endocrinologist witch.So, now I'm back to where I left off... waiting for someone at John Hopkins to follow up with me. I've been waiting for months and gotten nowhere... I'm not getting any better, in fact i'm getting worse and the Metoprolol is starting to not work anymore. Why is it so hard to get help? The test results don't lie... hook me up to an EKG and see it for yourself! I'll submit to any test just to end this horror!I've been suffering from this since last August... That's 9 months! The reason this is stretched out plain and simple are appointment and response times plus competence. Why do all appointments have to be on a month - 2 month basis? Then it takes months to get a follow up - if at all. Then there's the whole other issue of hand washing handoffs and no one willing to look beyond their specific area of specialty, but even the GPs and internal medicine doctors don't have broad enough knowledge to tie it together. It seems to be systemic throughout the entire medical field from what I'm experiencing. How are people ever diagnosed early enough to be successfully treated with these types of timelines and lack of response or follow through? Isn't there anyone who covers the whole body and can tie the systems and tests and symptoms together without bouncing me around and making me wait months to hear: "oh, that's not my area, you'll have to find someone else." ?Maybe I should go to medical school. It can't be that hard to learn to provide this level of care, or more accurately - no care. I can pass the buck all day long too, it would be great to get paid for it though! It's the labs that do all the work, the doctors only need to read the reports - if they chose to - if they understand fully what they're reading. Heck, from what I've experienced so far even that doesn't even have to be acknowledged or understood. But wait, can you trust the lab report?? LabCorp messed up loads of my tests and there's a question of doubt looming around the CT and Octreotide scan... If this is the state of medicine today, we are all doomed and should just crawl up in a ball in our bedrooms and wait to die. I'd give anything to find a competent doctor that can figure this out and not make me wait 2 months for an appointment or pass me onto someone else to wait another 2 months and pass me onto someone else....
    acronymforme 6 Replies Flag this Response
  • hi, im no dr. but i know exactly how you feel with the drs who accuse you of doing drugs or just diagnosing you as crazy/depressed when they cant figure it out ; im going thru the same thing, im 17 & havent been to school in 1.4 yr cuz im soo sick. but i do have some same symptoms as you such as chronic sinusitis &migranes, short of breath, ringing in the ears, excessive thirst/urination, palpitations, nausea, fatigue & abdominal pain ; a dr on here currently told me to get tested for diabetes/hypoglcycemia/hyperglycemia, and seeing as your chloreseral & blood tests were abnormal, maybe you should look into getting tested for it too (if you havent already). im also being tested for celiac disease and since you have abdominal pain & diarreah that could be possible, or maybe even IBS. i am not a dr, but hopefully this helped you out a bit.
    missmystery 1 Replies Flag this Response
  • hi, im no dr. but i know exactly how you feel with the drs who accuse you of doing drugs or just diagnosing you as crazy/depressed when they cant figure it out ; im going thru the same thing, im 17 & havent been to school in 1.4 yr cuz im soo sick. but i do have some same symptoms as you such as chronic sinusitis &migranes, short of breath, ringing in the ears, excessive thirst/urination, palpitations, nausea, fatigue & abdominal pain ; a dr on here currently told me to get tested for diabetes/hypoglcycemia/hyperglycemia, and seeing as your chloreseral & blood tests were abnormal, maybe you should look into getting tested for it too (if you havent already). im also being tested for celiac disease and since you have abdominal pain & diarreah that could be possible, or maybe even IBS. i am not a dr, but hopefully this helped you out a bit.Thanks. My Daughter is Hypoglycemic, but that isn't what's affecting me. She turns into a monster when she hasn't eaten, cries, irritable and then when she eats, within 15 minutes she's back to laughing and her usual self. Actually, I feel better when I DON'T eat.I'm sticking with my hunches around Neuroendocrine or (gulp) Pareoneoplastic.What I haven't shared yet is that nearly every single person in my family has died of cancer. Everyone was diagnosed too late to do anything - now I'm not surprised at this seeing what I'm going through to find proper diagnosis.Family History:Mother’s Side• Mother o anemic o low blood pressure o Breast Cancer that first presented as a pain in her forearm. The cancer had spread to her bone, lung and brain. She died at 50 – 2 years after my father died. o Was really, really skinny (stick thin) until she had a hysterectomy at 30 (don’t know why), then she became obese.• Grandmother o Complained of pain in her hip. Written off as arthritis for years. Turned out to be bone cancer. She died.• Grandfather – Died of alcoholism• Great Grandmother – Died of Cancer• Great Grandfather – Died of Cancer• Great Uncle – Brain Tumor. Died.• Aunt – Epilepsy. Died of seizure.• Uncle – Brain Tumor. Still living. In his 60’s. Father’s Side• Father o High Blood Pressure o Diabetes o Seizures (Took Dilantin) – but I never saw him have one. o Degeneration of the lower spine o Developed Lung & Liver cancer at 62. Spread to brain. Died at 50.• Grandmother o Had a stroke. • Grandfather – Don’t know. He was dead before I was born• My dad had a family of 10 siblings. They all died before 50 of assorted illnesses. Cancer, Lupus, Lung, Heart, ect…• Aunt who died of Lupus.
    acronymforme 6 Replies Flag this Response
  • Here are the lists of tests that have come back normal:Procedures performed (All negative):-Heart Catheterization-Nuclear Stress Test (Stopped because heart rate got too high)-EP Study of Heart (Couldn't reproduce the tachycardia)-Autonomic Nervous System Test (blew into tube & stopped because my sitting heart rate was all over the place)-Nerve Conduction Test-EEG-ECG-Sleep Study-Tilt Table Test (This was a joke. I can stand all day)-Endoscopy (Found a small hiatal hernia)Recent Scans performed (All negative):-CTs of: entire body-MRI of: Brain-Octreotide Scan of: entire body-Xray of: lungs-Ultrasound of ovaries and found cystsLab Test performed that have been normal:-Seretonon Plasma-5HIAA Plasma & Urine-Calcitonin-2 hour glucose-Sodium-Potassium-BUN-Calcium-Protein-Albumin-Bilirubin-PTH-TSH-TSH3-T4 Free-ACTH-Endomysial AB & Titer-Estradiol-FSH-GH-17 Hydroxyprogestero-ILGF-LH-Cortisol Plasma-Metanephrines Plasma-Prolactin-Renin Plasma-Testosterone-Albumin-SHBG-Thyroperoxidate Anti-Transglutaminase IgA-Glycosylated Hemoglobin-17 Hydroxypregnenolone-11 Deoxycortisol-Creatine Kinase-Alpha 1 Antitrypsin-IGA-Gliadin-Celiac Eval Panel-Ceruloplasmin-Liver/Kidney Microso-Smooth Muscle Antibody-Prothrombin Time-INR-APTT-Thrombin Time-DRVVT-Hexagonal Phospholipid Neutral-Platelet Nutralization-Beta-2 Glycoprotein I-Immunoglobulin G & A-Alpha, Beta & Gamma Globulin-Heavy Metals (arsenic, lead, mercury)-Porphyrins-Vitamin B12 & Folate-Sjogren's AB-Anti-Yo-Anti-RiAnti-Hu-Phospholipids-Rheumatoid Arthritis Factor-Angiotensin-Converting Enzyme-Antinuclear Antibodies Direct-Westergren-ALA Delta Urine-Porphobilinogen, QN, Random Ur-Lyme IgG/IgM-Troponin-Myoglobin-HCG-RBC-Hgb-MCHC-Plt-MPV-Neutrophils-Lymph-Mono-Eos-Baso-NRBC-ANA Direct-HBsAG-Hep C-Chromagranin A-Alk Phos-HCT-BNP-Catecholamines Urine-Ketones-Urobilinogen-Leuk EsteraseMedicines I take:-Iron Supplements-Vitamin D Supplements-Aspirin-Metoprolol (Since January - only keeps my heart from racing, doesn't stop anything else)
    acronymforme 6 Replies Flag this Response
  • I too am going through a misdiagnosis head scratching run for the hills doctors.However, you also need to look at what you are eating. One thing you MUST rule out is processed foods. At least you can rule that out while these other things are going on.Rule out..All processed and chemically treated foods. This means no restaurants, no cookies or baked goods. No milk (which comes from an animal your NOT related to) and NO meats.Get a juicer (the best one I've had is the Jack Lalanne as it is easier to clean and faster and it separates the pulp easier and faster than other juicers. I freeze a containers for the week and take one to work every day.Get containers that are individually sized portions about 8oz and freeze them to make your life easier. Have someone help you if you cannot do this.This helps to make sure you only ingesting things that grow from the earth. And the juicing factor eliminates your body having to generate so much energy to extract the enzymes from the pulp into your body..and thus your body can use the energy to heal and make up for any damage and energy insufficiency it is having.Those enzymes enter your body as fast as alcohol when it's in liquid form.You also may want to look up the Gerson Therapy which is what this is about. At least on this level you can be sure you are eliminating any poisons on foods or that your body may be trying to deal with or having a reaction with. Remember..you are a chemical machine and a very complex one. Anything we put into our bodyies..even earth food..puts wear and tear on the system..let alone all the non earth foods our bodies have to deal with.
    Anonymous 42789 Replies Flag this Response
  • hi, im no dr. but i know exactly how you feel with the drs who accuse you of doing drugs or just diagnosing you as crazy/depressed when they cant figure it out ; im going thru the same thing, im 17 & havent been to school in 1.4 yr cuz im soo sick. but i do have some same symptoms as you such as chronic sinusitis &migranes, short of breath, ringing in the ears, excessive thirst/urination, palpitations, nausea, fatigue & abdominal pain ; a dr on here currently told me to get tested for diabetes/hypoglcycemia/hyperglycemia, and seeing as your chloreseral & blood tests were abnormal, maybe you should look into getting tested for it too (if you havent already). im also being tested for celiac disease and since you have abdominal pain & diarreah that could be possible, or maybe even IBS. i am not a dr, but hopefully this helped you out a bit.I just ran across something that for some reason made me think of you. I don't know if this has your symptoms, but I've always learned to listen to my intuition... look into the forms of vasculitis and autoimmune disorders.http://en.wikipedia.org/wiki/Churg-Strauss_syndrome
    acronymforme 6 Replies Flag this Response
  • Would you believe me if I told you I had 95% of the symptoms that you have, and even been tested for the 1 in a million - you got it - pheochromocytoma. I am a 25 year old male.So I'll go down your list:I had some of these tests years before I got really ill. I spontaneously recovered for a couple years, and then I was much worse. Anyway:-Heart Catherization (yes, normal)-Nuclear stress test (normal, had to end early)-EP Study of the heart (could not produce tachy)-Never had nerve conduction test-EEG (supposedly normal but I reacted to the strobing light at 15 and 30 hz)-ECG (too many times to count. SVTs)-Sleep Study (hard drives crashed, went home)-Tilt Table Test (normal, but felt better that day. However, I do have a form of POTS.)-Endoscopy (normal)Scans-CTs of entire body (negative)-MRI of brain (normal)-Xray of lungs (normal many times, but one time I had bilateral pleural effusion)-MRI of chest (one incidence of very large and spontaneously disappearing lymph nodes)I had many of the same tests of you (but I don't know what some are) but I'll point on the more important ones:-Potassium (occasionally slightly low)-Thyroid tests (all normal but possible subclinical hypothyroidism)-Bilirubin (occasionally high - around 1.2 or so)-Cortisol (this can be all over the place. Cortisol drops in response to exercise)-Metanephrines Plasma (negative for pheochromocytoma twice)-Testosterone (used to be very low for my age but within normal range. Twice as high now)-Liver (ALT can sometimes be elevated - take liver support)-Porphyrins (I have porphyria but this can be hard to diagnose)-Prothrombin time (I forget, but I had a positive fibrin monomer and high thrombin-antithtombin = hypercoagulation)-Celiac (negative, but strong antibody response to wheat. I eat gluten free.)-Vitamin B12 (In the low 300s which is normal in US and abnormal everywhere else. I took shots every day as they helped with symptoms a lot.)-Folate RBC (normal, but I was already taking L-methylfolate)-Heavy metals (possible chronic arsenic exposure with a contaminated well, negative lead, low mercury)-Lyme ELISA (negative)-Hep A, B, C (negative)-Catecholamines urine (normal - for pheo I think)-Chromagranin A (normal - for pheo I thinkI used to take metopropolol. Kept heart from racing and did nothing else as you said. I had chest pain.I'll copy your symptom list and modify where needed it so it fits meSymptoms:- SVTs at 200+ bpm (yes, I have been above 200 bpm)- High blood pressure during SVT attacks (yes, up to 260/140)- Near fainting during SVT attacks (felt that way, but probably not)- Palpitations- Shortness of Breath- Intolerance to even the slightest exercise or exertion- Intolerance to heat (yes, severe. I had intolerance to cold as well.)- Patches of hair loss on legs (I am male)- Weight Gain (After feeling better. Can't lose anything, but not gaining anything either.)- Chest pain in all sorts of locations- Neck Stiffness (side to side movement)- Headaches & Migraines (my eyes would hurt too and I would be sensitive to light)- Ringing in ears (occasional)- All sorts of weird vision problems- Insomnia (such as waking up at 4 AM feeling like I was hit by a truck and not being able to sleep again)- 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. (exactly the same as me)- Irritability*** (very irritable)- Tiredness***I'm getting tired now and can't go over abnormal test results. Your abnormal test results are not all the same like symptoms, but my test results have been anywhere from all over the place to perfect. For a while I had borderline low RBC and WBC. Since results changed over time, they are quite meaningless, however, my labs are pretty much perfect now.Well, this all started with a infection in my pelvic area. There was a lesion, but I didn't know what it was from, and my pelvic area was swollen and the lymph nodes were extremely large and the whole area was tender to the touch. Didn't see a doctor at first as I thought the infection would go away, but then I became very ill. Doctor dismissed all my symptoms as anxiety, and I kept getting sicker and I was back in the clinic probably every week or two. I was not given antibiotics unfortunately as the doctor blamed everything on me. I was perfectly healthy before this and mountain biked 25 miles a day.So, 10 months Later, I end up being diagnosed with tick-borne infections - Lyme Disease, Bartonella. I had antibodies to a severe tick disease called Rocky Mountain Spotted Fever, but it was probably either cross-reactive with something else or a previous infection.The doctor I saw tested me through a lab called Igenex out of California instead of LabCorp as they test for more strains of the disease (important). I had a positive CDC positive Western Blot (IgG, IgM) and a 1:80 positive IFA to the Lyme bacteria. PCR was negative.Treatment of choice is usually Doxycycline, but this is where it got really scary. After the fourth night of antibiotics, I ended up in the ER after falling to the ground unable to think, speak, and with a heart rate of 200+ bpm. This was called a herxheimer reaction, and while it is expected, most do not get one nearly as severe as I did. I actually stopped antibiotics for 10 months because I couldn't tolerate the treatment. I suffered terribly these 10 months, but I couldn't think of anything more scary than the antibiotics. Not only that, I was asked if I took cocaine over and over again from the hospital the EMTs and was classified as a nutcase. I had very traumatizing experiences from the lack of care from so-called hospitals.I got back on the boat 10 months later and started real slow and listened to my body. After a few months of antibiotics, I was tolerating them fine, but every 4th week was scary and debilitating (the life cycle of the organism). My lab work got better. My hormones got better. My anxiety got much worse and then much better. When treating bartonella, I quit when it got too difficult, and then ended up in a worse state than when I started.I also have low Natural Killer Cells (CD56, CD57). I have a co-morbid diagnosis of CFS (which is really an immune deficiency syndrome despite it's name), and this may be why it's hard to rid infections. I saw a top specialist for this condition, and I had an extremely abormal bicycle test with EKG and VO2 gas analysis. It's basically a test where you ride on a stationary bike with an EKG, and you wear a mask that measures your oxygen and carbon dioxide). This test indicated moderate-severe physical disability and mitochondrial dysfunction. It's not a mainstream test, and I think there are only a few doctors in the nation that use them, but 4 recent medical journals have validated my abnormal results as consistent with CFS. I also had 0.0 Human Growth Hormone before and after exercise (very abnormal but consistent with CFS). I had no cortisol response to exercise (very abormal, but once again, consistent with CFS).I have no reactivated viruses that I know of, but with your gastrointestinal complaints, you might have reactived enteroviruses.Viruses most often reactivated in CFS (that you can easily get tests for):EBVCMVHHV-6HHV-8Coxsackie BEBV (Mono) is probably the most common. I was never exposed to mono, and last we checked, I do not have any reactivated viruses that I know of. Usually people have 1 or more of these common reactivated viruses.That's about all I can think of. If you need more info, I can pull out my labs and name all the infectious stuff that a good doctor will test for. Hopefully you have good insurance, because I believe my infectious testing ran around 6 grand or so.Oh, and skip seeing an infectious disease doctor. They are condescending and rude, and ironically, they don't understand chronic infectious disease complexes. A bunch of ducks.I have never seen anyone with a history so similar to mine. Running into this post is the strangest thing I have ever seen since being ill.By the way, what state do you live in? PM me if you have any questions.
    Anonymous 42789 Replies Flag this Response
  • Would you believe me if I told you I had 95% of the symptoms that you have, and even been tested for the 1 in a million - you got it - pheochromocytoma. I am a 25 year old male.So I'll go down your list:I had some of these tests years before I got really ill. I spontaneously recovered for a couple years, and then I was much worse. Anyway:-Heart Catherization (yes, normal)-Nuclear stress test (normal, had to end early)-EP Study of the heart (could not produce tachy)-Never had nerve conduction test-EEG (supposedly normal but I reacted to the strobing light at 15 and 30 hz)-ECG (too many times to count. SVTs)-Sleep Study (hard drives crashed, went home)-Tilt Table Test (normal, but felt better that day. However, I do have a form of POTS.)-Endoscopy (normal)Scans-CTs of entire body (negative)-MRI of brain (normal)-Xray of lungs (normal many times, but one time I had bilateral pleural effusion)-MRI of chest (one incidence of very large and spontaneously disappearing lymph nodes)I had many of the same tests of you (but I don't know what some are) but I'll point on the more important ones:-Potassium (occasionally slightly low)-Thyroid tests (all normal but possible subclinical hypothyroidism)-Bilirubin (occasionally high - around 1.2 or so)-Cortisol (this can be all over the place. Cortisol drops in response to exercise)-Metanephrines Plasma (negative for pheochromocytoma twice)-Testosterone (used to be very low for my age but within normal range. Twice as high now)-Liver (ALT can sometimes be elevated - take liver support)-Porphyrins (I have porphyria but this can be hard to diagnose)-Prothrombin time (I forget, but I had a positive fibrin monomer and high thrombin-antithtombin = hypercoagulation)-Celiac (negative, but strong antibody response to wheat. I eat gluten free.)-Vitamin B12 (In the low 300s which is normal in US and abnormal everywhere else. I took shots every day as they helped with symptoms a lot.)-Folate RBC (normal, but I was already taking L-methylfolate)-Heavy metals (possible chronic arsenic exposure with a contaminated well, negative lead, low mercury)-Lyme ELISA (negative)-Hep A, B, C (negative)-Catecholamines urine (normal - for pheo I think)-Chromagranin A (normal - for pheo I thinkI used to take metopropolol. Kept heart from racing and did nothing else as you said. I had chest pain.I'll copy your symptom list and modify where needed it so it fits meSymptoms:- SVTs at 200+ bpm (yes, I have been above 200 bpm)- High blood pressure during SVT attacks (yes, up to 260/140)- Near fainting during SVT attacks (felt that way, but probably not)- Palpitations- Shortness of Breath- Intolerance to even the slightest exercise or exertion- Intolerance to heat (yes, severe. I had intolerance to cold as well.)- Patches of hair loss on legs (I am male)- Weight Gain (After feeling better. Can't lose anything, but not gaining anything either.)- Chest pain in all sorts of locations- Neck Stiffness (side to side movement)- Headaches & Migraines (my eyes would hurt too and I would be sensitive to light)- Ringing in ears (occasional)- All sorts of weird vision problems- Insomnia (such as waking up at 4 AM feeling like I was hit by a truck and not being able to sleep again)- 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. (exactly the same as me)- Irritability*** (very irritable)- Tiredness***I'm getting tired now and can't go over abnormal test results. Your abnormal test results are not all the same like symptoms, but my test results have been anywhere from all over the place to perfect. For a while I had borderline low RBC and WBC. Since results changed over time, they are quite meaningless, however, my labs are pretty much perfect now.Well, this all started with a infection in my pelvic area. There was a lesion, but I didn't know what it was from, and my pelvic area was swollen and the lymph nodes were extremely large and the whole area was tender to the touch. Didn't see a doctor at first as I thought the infection would go away, but then I became very ill. Doctor dismissed all my symptoms as anxiety, and I kept getting sicker and I was back in the clinic probably every week or two. I was not given antibiotics unfortunately as the doctor blamed everything on me. I was perfectly healthy before this and mountain biked 25 miles a day.So, 10 months Later, I end up being diagnosed with tick-borne infections - Lyme Disease, Bartonella. I had antibodies to a severe tick disease called Rocky Mountain Spotted Fever, but it was probably either cross-reactive with something else or a previous infection.The doctor I saw tested me through a lab called Igenex out of California instead of LabCorp as they test for more strains of the disease (important). I had a positive CDC positive Western Blot (IgG, IgM) and a 1:80 positive IFA to the Lyme bacteria. PCR was negative.Treatment of choice is usually Doxycycline, but this is where it got really scary. After the fourth night of antibiotics, I ended up in the ER after falling to the ground unable to think, speak, and with a heart rate of 200+ bpm. This was called a herxheimer reaction, and while it is expected, most do not get one nearly as severe as I did. I actually stopped antibiotics for 10 months because I couldn't tolerate the treatment. I suffered terribly these 10 months, but I couldn't think of anything more scary than the antibiotics. Not only that, I was asked if I took cocaine over and over again from the hospital the EMTs and was classified as a nutcase. I had very traumatizing experiences from the lack of care from so-called hospitals.I got back on the boat 10 months later and started real slow and listened to my body. After a few months of antibiotics, I was tolerating them fine, but every 4th week was scary and debilitating (the life cycle of the organism). My lab work got better. My hormones got better. My anxiety got much worse and then much better. When treating bartonella, I quit when it got too difficult, and then ended up in a worse state than when I started.I also have low Natural Killer Cells (CD56, CD57). I have a co-morbid diagnosis of CFS (which is really an immune deficiency syndrome despite it's name), and this may be why it's hard to rid infections. I saw a top specialist for this condition, and I had an extremely abormal bicycle test with EKG and VO2 gas analysis. It's basically a test where you ride on a stationary bike with an EKG, and you wear a mask that measures your oxygen and carbon dioxide). This test indicated moderate-severe physical disability and mitochondrial dysfunction. It's not a mainstream test, and I think there are only a few doctors in the nation that use them, but 4 recent medical journals have validated my abnormal results as consistent with CFS. I also had 0.0 Human Growth Hormone before and after exercise (very abnormal but consistent with CFS). I had no cortisol response to exercise (very abormal, but once again, consistent with CFS).I have no reactivated viruses that I know of, but with your gastrointestinal complaints, you might have reactived enteroviruses.Viruses most often reactivated in CFS (that you can easily get tests for):EBVCMVHHV-6HHV-8Coxsackie BEBV (Mono) is probably the most common. I was never exposed to mono, and last we checked, I do not have any reactivated viruses that I know of. Usually people have 1 or more of these common reactivated viruses.That's about all I can think of. If you need more info, I can pull out my labs and name all the infectious stuff that a good doctor will test for. Hopefully you have good insurance, because I believe my infectious testing ran around 6 grand or so.Oh, and skip seeing an infectious disease doctor. They are condescending and rude, and ironically, they don't understand chronic infectious disease complexes. A bunch of ducks.I have never seen anyone with a history so similar to mine. My older sister actually found this post and she thought it must have been me who wrote it years ago – then she realized it wasn't me. She told me to reply to you.By the way, what state do you live in? PM me if you have any questions.
    Anonymous 42789 Replies Flag this Response
  • Hello. I left you a really long detailed post. My story is like a mirror image of yours (including negative tests for pheos). I guess my post is waiting for a moderator to approve it or something. I hope it will point you in the right direction.
    Anonymous 42789 Replies Flag this Response
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  • So i can see when the dr would think polycycstic ovarian but in some cases women actually have one of these genetic or autoimmune disorders see if they can test for these Adenocarcinoma,carcinoma or endometrial hyperplasisa hope this helps.
    jennifnutta 4 Replies Flag this Response
  • Hello. I left you a really long detailed post. My story is like a mirror image of yours (including negative tests for pheos). I guess my post is waiting for a moderator to approve it or something. I hope it will point you in the right direction.send your response directly to my email. This moderator stuff takes way too long. Sometimes it takes "days" for them to approve a post - if at all! My email addy is my username at hotmail.Looking forward to your advice.
    acronymforme 6 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.