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What Ails Steve?

Hi, my name is Steve.
Do you have any of the same puzzling illnesses described below?
Like me, have you been to dozens of doctors with little improvement?

I've created this web site to share health information.
Maybe you'll find a clue here that will help you find a cure for your illness.
And if you know something that might help me, please email me. Thanks!

Quick Summary Do you have any of these illnesses / symptoms too?	I turned 41 in the year 2002, and a series of mysterious health problems began about 4 years ago: thyroid cancer severe motion sickness such that I can't move or read daily painful swelling in my tongue, throat and voicebox such that I can't speak episodic sensation of suffocation (air hunger) daily headaches, prompted by visual effort blind spots in visual field, auras, and other visual disturbances noise sensitivity in one ear near constant stomach pain from most foods I'm mostly housebound, unable to move or do visual effort without getting motion sick within minutes. There are long stretches during which I can't speak. There are very few things I can eat without worsening various symptoms. I spend much of my days just staring at the TV, and am in near constant pain from several sources. Those are the most significant of my symptoms, and doctors can't explain the cause or offer relief. I've had dozens of medical tests, virtually all with normal results. The one far out of normal range is mercury levels. Is all this mercury poisoning? In September 2002, I located a woman who has very similar symptoms: thyroid cancer, abnormal hearing in one ear, reading and movement induced dizziness which is influenced by thyroid hormone dose, AND she says she has 20 dental amalgam fillings! She has not yet been tested for mercury poisoning. There's plenty more info below. I hope you'll find something that might help you with your symptoms, or might know something that can help me. Thanks for looking!
Summary of My Conclusions	Since high mercury levels are the only abnornal test result, my current thinking is that must be the primary trigger. I suspect the mercury impaired my thyroid, or my body's proper use of thyroid hormone. So, a hypothyroid condition gradually developed. The cancer was my body's attempt to create more thyroid cells to correct the hormone levels. Hypothyroidism is associated with low-blood pressure and vasodilation. I suspect vasodilation of blood vessels in my brain, eyes and ears is responsible for what can be grouped into a migraine category: the headaches, visual effects, auditory effects. If I take Synthroid and Cytomel (synthetic thyroid hormones), the more I take, the less all these symptoms. The high mercury levels, coupled with antibiotics and other medications, has disrupted my disgestion. The severity of the tongue/throat/ear symptoms is completely controlled by what I eat. If I stop eating, I feel MUCH better after two days. Seems like a food allergy, right? Exclusion diets reveal the worst irritant is carbohydrates (particularly fructose), but ALL foods produce at least some symptoms.
Chronic Symptoms Here's a more complete list:	Still Out of Control: motion sickness nausea headaches tongue pain, began when I took meclizine (antivert) dry throat, began when I took meclizine (antivert) muffled hearing in left ear after reclining noise sensitivity in left ear after eating carbohydrates itchy left ear canal weak voice in evenings, began when I used Nasonex stomach pain breathing difficulty Now Under Control, more or less: blind spots in visual field other visual effects yellowed skin toothaches foot sweat, night sweats heartburn Read the details about the symptoms.
Chronology Symptom info, in date order	1996: itchy left ear canal begins 1997: noise sensitivity in left ear develops, muffled hearing after reclining 1998: weak/hoarse voice begins when I use Nasonex 1998: motion sickness develops 1999: tongue and throat pain begins when I take meclizine (antivert) 1999: blind spots appear in visual field 2000: 4-day fast nearly kills me due to ketoacidosis, yellowed skin begins 2001: near death again from Earthrise brand chlorella contaminated with mercury, triggers breathing problem 2001: dentist damages tooth during amalgam filling replacement, toothache begins 2001: thyroid cancer, thyrodectomy 2002: nurse damages nerve during blood test, lose use of left arm, slowly recovering 2002: carbonated beverage triggers suspected ulcer (why is my stomach so sensitive?)

Yes, this is a long page.
I've put all this on the same page so people entering multiple keywords can find it more easily via search engines.

Tests Most tests show normal results. Most of the few abnormal ones (like mercury poisoning) are debated by the doctors as to their signficance.	Tests with normal results: brain MRI brain MRA sinus CAT scan heart stress test liver function blood tests DHEA levels (adrenal function) allergy tests via skin for all foods I eat allergy tests via blood for about 50 common allergens blood sugar level all typical blood tests HIV intestinal parasites, including yeast toxic metals, except mercury, which is abnormally high esophageal endoscopy 24-hour pH probe test gastric emptying test H-pylori throat cultures Tests with abnormal results: hair and urine analysis show high levels of mercury (97th percentile) CDSA (stool analysis) shows extreme dysbiosis (off their scale) ENG (Electronystagmography) repeatedly shows left / right imbalance MRI and sonogram confirmed thyroid cancer (thyroidectomy was performed)
Diagnoses	I've had about as many diagnoses as doctors I've seen. tension headache acid reflux esophagitis mercury poisoning candidiasis (yeast overgrowth) opthalic migraine binocular vision disorder follicular papillitis anisekonia vestibular migraine vestibular neuropathy labyrinthitis Doctors believe test results indicate I do NOT have: MS Meniere's disease BPPV diabetes tinnitus
Medicines and Treatments None of these has had any lasting, beneficial effect on any of the "Out of Control" symptoms listed in the Chronic Symptoms box further above.	I've tried many drugs and supplements, some of which have had permanent negative side effects, others which nearly killed me. acid reducers: tagamet, zantac, prilosec, prevacid, aciphex, protonix stomach meds: carafate, propulsid motion sickness: meclizine (antivert), assorted diuretics allergy meds: claritin antifungals: nystatin, diflucan, lamisil ultra-low carbohydrate diet vitamins: every type you can name enzymes: many different types herbs: I've tried a wide assortment Procedures: months of vestibular rehab therapy months of visual rehab therapy dental amalgam replacement thyroidectomy Only the following produce some limited benefit: high doses of synthroid/cytomel reduce the motion sickness and visual effects propulsid's motility enhancement cleaned out my bowels and completely relieved the tongue and throat pain for one week (until my body seemingly adjusted to the drug) "Experience" brand colon cleanser reduces the tongue and throat pain, I presume via action similar to propulsid Solaray brand "Comfree" algin/pepsin capsules also reduce the tongue and throat pain enteric coated probiotics: also reduce the tongue and throat pain a 4-day fast (liquids only) eliminated the tongue/throat problem as well as the ear problems, but triggered severe ketoacidosis that nearly killed me ultra-low carb diet (< 50g/day) virtually eliminates left ear problems, but is dangerous long term Other Medicines: In case there's a connection (right now I don't think so), or a pattern with your illness, I'll also mention that I took the following medicines for bad skin: tetracycline - for about 10 years accutane - largely resolved the acne
Diet	Read the details about my diet.

(This is another good place to break this big table.)

Thyroid Cancer My thyroidectomy experiences	I've broken this out onto separate pages. Pre-surgery notes Surgery diary Post-surgery diary Post-surgery scar pictures (not recommended for the squeamish) Some Web sites I found helpful: Thyroid-Cancer.Net - good overview ThyroidManager.Org - if you want the details About.Com - thyroid disease page ThyCa.Org - survivors' association Linda's personal page - very upbeat
Doctors and other health care professionals	I've seen many in the Baltimore / Washington area. Read about my experiences, learn from the mistakes, and find a good doctor for yourself. Dr. Hubert Skinner Dr. Ronald Berger Dr. Binyamin Rothstein Dr. Nakul Goyal Dr. Mark Williams Dr. Wayne Koch Dr. Thais Weibel Dr. John Carey Dr. Lynne Zheutlin Tim O'Shea Dr. James Sciubba Dr. Bruce Rind Dr. Eugene Sambataro Dr. Nicholas Argento Dr. Russell Schub Dr. Gebreye Rufael Dr. Lea Lazar Dr. Ahmad Shamim Dr. Richard Chasen Quest Diagnostics Dr. Bill DeLong Dr. Hubert Levesque
Social Security Disability	Don't expect SS Disability to come to your rescue quickly. It took over two years from filing to collect any benefits. I'll write about this when I can.
Legal and Malpractice	I've reached a point where I am seeking legal representation. My medical expenses and lost wages alone total over a million dollars. If you are a lawyer with experience in this area, please email me. Are you aware of how much risk you are taking with medical care? If you are injured, you have little chance of recovering the cost of treatment, much less compensation for the injuries. Many of my current illnesses are iatrogenic (caused by medical treatment), but most lawyers won't deal with them because the symptoms are not overtly obvious. One lawyer told me his firm only dealt with obvious malpractice cases, for example, ones in which the doctors amputated the wrong arm or leg. Here's what medical treatment has done to me: mercury poisoned from dental work tongue/throat pain and digestion problems started when I took meclizine (antivert) doctor recommended extreme low-carb diet nearly killed me, cost $thousands in emergency room care teeth damaged during amalgam replacement, still painful misdiagnosed thyroid cancer delayed treatment for months mercury-contaminated Earthrise brand chlorella caused breathing problems that nearly killed me botched blood test damaged nerve in my arm, rendering it painful and of limited use I'll write more about this when I can.
My Current Status	I'm largely housebound now. Movement or visual effort makes me motion sick, and I can only do very limited amounts of each per day. The vast majority of my time is spent sitting or lying still listening to the TV or radio. I assembled the information you see over the course of many months in short stints at the computer. Car travel of more than 30 minutes triggers more intense motion sickness bouts that take weeks or months to calm down, so I don't go many places other than to doctors. Digestion, particularly carbohydrates, produces pain, so I have a very limited, boring diet. The teeth which have had amalgam replacements (left side) are painful. That's held up progress to have replacements done on the right side because I need a side on which I can still chew food. My arm and shoulder hurt from the botched blood test. I used to exercise some, but now I can't do that either. If I sit still with my eyes closed and don't eat anything, I actually feel reasonably well. But, what kind of a life is that? I can't be the only person in the world with these symptoms. I hope you've found something here that might help you with your illness. If you think you can help me, please write to me. Since I can only use the computer for brief periods, I can't guarantee a reply within any particular time, but I'll try. Thank you!