the following discussions are emails i sent to particular persons/organizations attempting to outline my concerns with regards to my personal healthcare situations/experiences.
to: my pcp
From: TERRI MC CURDY
To: Health Center
Sent: 09/14/2015 11:00 a.m. CDT
Subject: this message is mostly for...
Thank you for your message. It has been successfully sent to the appropriate care team.
I am and have been on the phone for 40 minutes and counting, in the attempt to cancel my appointment with you today. I tried to cancel using the patient portal online but it indicated that such an appointment could not be canceled online. I called..., followed the prompts to the cancellation prompt and have been holding every since. I would like to rescheduled at your earliest available time.
Although it has taken over 3 years for me to have a solid diagnosis for my debilitating health issues, since returning to utilizing medical professionals, I finally have some confidence as to what has compromised my health from my childhood but most aggressively since my 40s.
I am now confident, in spite of the initial apprehension of clinical guidelines for hfi, that I do in fact, have some yet to be identified form of hereditary fructose intolerance. My specific manifestation is of a progressive nature, with no apparent early childhood gastrointestinal adverse indications, thus no aversion to sugar/sweets prior to my 40s. It should be noted that the hypoglycemic episodes (in the presence of ingested fructose/carbs were chronic and progressed to debilitating, until I discovered the connection with fructose intolerance and started to eliminate sugars). The acute gastrointestinal, liver and kidney, oxidation phosphorylation/mitochondria disease (chronic fatigue, muscle-skeletal pain-fatigue, exertion intolerance...) symptomatic indicators became increasingly apparent in my 40s-50s.
At this time (while ingesting no carbs/no plant foods or derivative of such, since August 29th 2015) and for the first time in a very long time, I am feeling significantly better and my intolerance for exertion seems to be slowly subsiding. I need to wait longer to understand whether or not I shall be able to completely recover to my prior health and activities. My recovery may be compromised by nutritional restrictions; i.e. possible low folate, low platelets and other essential vitamin and minerals. This is another reason why I would like to request another cbc. An every 4 months monitoring of my cbc for at least another 8 months. Thereafter, perhaps every 6 months for a year and then once every year. I still need to make sure there are no lingering mitochondria disease/dysfunction.
I read an article on the recommended diagnostic algorithm for diagnosing such conditions. One of the steps was an exercised physiology exam for lactic levels, vo2m o2, co2 and etc., levels during exercise. I would like to know if you think this would be of some benefit to me. I think that it might.
Lastly, now that we have made some progress with regards to the most debilitating aspect of my health issues, I would like to talk to a brain neurologist to discuss the extent the high blood pressure and fluid deregulation caused by the hfi intolerance, had on my brain. I still have some moments (anxiety, eating too late, salt) induced rises in my blood pressure. Overall, I believe I have fewer such episodes at home/in non stressing settings.
My lab work is consistent with my trial and error attempts at minimizing and then eliminating fructose/all plant food from my diet. The hfi test via... was negative, suggesting that I fall in the 3% of those who do not fall in the category of the 3 most common mutations thus far identified relating to the cause of hfi.
In view of this, I would like to request a total cbc work up, including liver function test, endocrine, thyroid, white and red blood, cholesterol specification, electrolytes, alpha feto protein and etc., in order to establish a new base line now that I have (to my knowledge) eliminated all carbs/plant based foods and drugs.
It's been over an hour and a half now and no one has picked up the phone so that I may cancel today's appointment by phone. Please accept this as an acceptable form of cancelling my appointment today at...wth...
In view of the high cholesterol numbers I would like to request a visit with the cardiologist to make sure my ldl are not the small, dense/hard kind.
thank you all very much,
terri a. mccurdy
terri a. Mccurdy
...medical insurance...gate keepers or patient advocates...?
Often diagnosis is not made until adulthood when patients sometimes report symptoms as a "food allergy". Even in undiagnosed adults HFI remains a problem due to recurrent inadvertent fructose ingestion. Many deaths have been documented in undiagnosed HFI individuals who have been challenged unintentionally (6). These reasons underscore the need for early, reliable, and non-invasive diagnosis of HFI. One method commonly employed for diagnosis of fructose malabsorption is the hydrogen (H2) breath test. This test does not give a proper diagnosis for HFI. HFI results from a deficiency of aldolase B activity in the liver, kidney, and intestine (7). The disease is inherited as an autosomal recessive trait and most parents of HFI patients and siblings who are carriers are unaffected and exhibit wild-type aldolase B activities (8). These repercussions of fructose ingestion are most dire for the newborn infant whose parents are unaware of the disorder and may coerce the persistent ingestion of fructose, making weaning during infancy the period of greatest risk. Undoubtedly some of the many cases of undiagnosed liver failure in infancy may be due to HFI. Those individuals that survive develop a permanent and powerful protective aversion to sweet-tasting foods (9). However, even later in life acute exposure of HFI subjects to the noxious sugar can lead to liver failure and death (10-12).
Aldolase B is the major aldolase isozyme in the liver and functions in both fructose metabolism, using fructose 1-phosphate as a substrate, and in gluconeogenesis, producing fructose 1,6-bisphosphate from the two triose phosphates, glyceraldehyde-3-phosphate and dihydroxyacetone phosphate. In the absence of appreciable aldolase B activity, as in HFI patients, fructose challenge results in a rapid accumulation of fructose 1-phosphate in the liver, causing sequestration of inorganic phosphate. This drop in the intracellular phosphate pool activates AMP deaminase, leading to degradation of adenine nucleotides (13). The concomitant hypoglycemia is brought on by competitive inhibition of phosphorylase a by fructose 1-phosphate (14). These potentially serious manifestations of HFI arise from the inability of the body to degrade fructose and the subsequent impairment of glucose homeostasis (15). Click to see a body diagram of fructose metabolism in the normal and HFI patient.
The treatment for HFI is the exclusion of fructose, sucrose, and sorbitol (less than 40 mg/kg per day) from the diet (3) and results in complete alleviation of most symptoms and a normal life span (1). Older HFI subjects who adhere to a self-imposed fructose-restricted diet may continue to live undiagnosed and lead relatively normal lives. Complete exclusion of fructose is often difficult, however, and many HFI patients develop a syndrome of chronic fructose intoxication characterized by retarded growth, chronic liver disease, and hepatomegaly (3, 9, 15, 16). Furthermore, if not treated properly, these patients suffer episodes of hypoglycemia, general ill health, and strained relationships with family members due to their peculiar eating habits (17). Constant daily risk remains for HFI individuals due to the increasingly widespread use of these sugars as nutrients and sweeteners (18).
My name is Terri A. McCurdy. In short, I have suffered from symptoms that seem to be progressive and increasingly aggressive. I cannot pinpoint the exact time when these particular symptoms began to manifest, but I would guesstimate sometime soon after my then husband and I were sent to as 'ministers' with a religious group. That ended up being a very stressful experience and period of time... which also included a miscarriage...
In late... I had a freak-fall accident playing badminton at a family picnic. The subsequent misdiagnosis resulted in a month and a half of undiagnosed internal bleeding in my left lung. I had to undergo 2 surgeries; which the surgeon confided in me that such was unprecedented with respect to him performing this particular procedure (they couldn't stop the bleeding and I wasn't clotting). My brother recently informed me that I also had a blood transfusion; which I had either forgotten or simply was unaware of that occurring at that time. I spent about 2 weeks in intensive care; during which there was a period of time that the doctors apparently did not think I was going to recover. My then husband's duress was quite evident to me and we had two very young children at that time.
As it turns out that entire situation was a very traumatic experience for me of which I am currently seeing a clinical psychologist to deal with the PTSD that I have developed towards going to my doctor's/medical appointments.
I was forced to seek medical help when the symptoms became increasingly debilitating. I began having increasingly severe hypoglycemic episodes, painful headaches, hypertension, severe circulatory problems, & several severe food intolerance, chronic fatigue, muscle fatigue, temperature regulatory problems, a weakened immune response and etc.
2) http://www.mitoaction.org/mito-faqMitochondrial disease is an inherited chronic illness that can be present at birth or develop later in life. It causes debilitating physical, developmental, and mental disabilities with symptoms including poor growth; loss of muscle coordination; muscle weakness and pain; seizures; vision and/or hearing loss; gastrointestinal issues; learning disabilities; and organ failure. About 1 in 2,000 people has Mito. It’s progressive and there is no cure.What are the Symptoms of Mitochondrial Disease?The severity of mitochondrial disease symptoms is different from person to person. The most common symptoms are:
How common are mitochondrial diseases?
It is important to determine which type of mitochondrial disease inheritance is present, in order to predict the risk of recurrence for future children. The types of mitochondrial disease inheritance include:
How is Mitochondrial Disease Treated?
What is the Prognosis for Someone?
Since the traumatic experience with the misdiagnosis of the fall accident in...and the miraculous eventual recovery, I'd stopped going to conventional medical persons and stopped taking any prescribed or over the counter drugs. I believed eating right, exercise and spiritual meditation would help my body heal itself. In 2009 I began seeing a therapist and began seeing an alternatives physician who specialized in nutritional elimination diets. It was here that I learned I had gluten sensitivity and was having hypoglycemic episodes.
I began researching my symptoms and fructose was implicated with respect to the hypoglycemic episodes. In short, from 2009 to this present date, I have researched and educated myself with regards to my symptoms and the possible causes. I began reducing gluten and fructose from my diet. I suffered less symptoms as I continued to strive to reduce and or eliminate lactose, gluten and fructose from my diet.
During this time, however; as I was suffering less from certain symptoms, other symptoms were getting worse. I was becoming more and more fatigued. In addition to the general lethargy, I was also experiencing atypical muscle fatigue from such activity as simply raising my arms or bending over. Walking up and down stairs became such a problem that I began using only transit stations with elevators and escalators. I would get extremely tired to the point that getting up from the couch to walk a few steps was a challenging effort.
Carbohydrates are sugars. Some sugars are simple, and others are more complex. Sucrose (table sugar) is made of two simpler sugars called glucose and fructose. Lactose (milk sugar) is made of glucose and galactose. Both sucrose and lactose must be broken down into their component sugars by enzymes before the body can absorb and use them. The carbohydrates in bread, pasta, rice, and other carbohydrate-containing foods are long chains of simple sugar molecules. These longer molecules must also be broken down by the body. If an enzyme needed to process a certain sugar is missing, the sugar can accumulate in the body, causing problems.
Glycogen Storage Diseases Glycogen storage diseases occur when there is a defect in the enzymes that are involved in the metabolism of glycogen, resulting in growth abnormalities, weakness, and confusion.
There are many different glycogen storage diseases (also called glycogenoses), each identified by a roman numeral. These diseases are caused by a hereditary lack of one of the enzymes that is essential to the process of forming glucose into glycogen and breaking down glycogen into glucose. About 1 in 20,000 infants has some form of glycogen storage disease.
Symptoms Some of these diseases cause few symptoms. Others are fatal. The specific symptoms, age at which symptoms start, and their severity vary considerably among these diseases. For types II, V, and VII, the main symptom is usually weakness. For types I, III, and VI, symptoms are low levels of sugar in the blood and protrusion of the abdomen (because excess or abnormal glycogen may enlarge the liver). Low levels of sugar in the blood cause weakness, sweating, confusion, and sometimes seizures and coma. Other consequences for children may include stunted growth, frequent infections, and sores in the mouth and intestines.
Glycogen storage diseases tend to cause uric acid (a waste product) to accumulate in the joints, which can cause gout (see see Gout), and in the kidneys, which can cause kidney stones (see see Stones in the Urinary Tract). In type I glycogen storage disease, kidney failure is common in the second decade of life or later.
Diagnosis and Treatment The specific type of glycogen storage disease is diagnosed by examining a piece of muscle or liver tissue under a microscope (biopsy).
Treatment depends on the type of glycogen storage disease. For most types, eating many small carbohydrate-rich meals every day helps prevent blood sugar levels from dropping. For people who have glycogen storage diseases that cause low blood sugar levels, levels are maintained by giving uncooked cornstarch every 4 to 6 hours around the clock. For others, it is sometimes necessary to give carbohydrate solutions through a stomach tube all night to prevent low blood sugar levels from occurring at night.
I was able to get gluten out of my diet perhaps by 2011 but it took until the end of 2014 for me to realize that I cannot consume/metabolize, not only fructose but apparently any carbohydrates without developing debilitating symptoms such as the hypertension, severe numbness, diarrhea, acute swelling like head pain/pressure, back flank muscle spasms, increased general fatigue and muscle fatigue and etc.
Utilizing the current medical research, my medical records, and what I could remember of the chronology of my symptoms, I developed a health/medical profile of myself.
As a result of this process and based on the data and research I did consisting of information on basic genetics, genetic mutations, genetic disorders to personal blogs with like sufferers, I strongly suspected and continue to strongly suspect the following conditions to be the cause of my lifelong and latent symptoms; psychological and physical.
Although apparently unprecedented, I believe there is a general co-morbid relationship among the suspected underlining conditions; specifically perhaps the hfi and mitochondrial disease. The fructose and carbs in my diet seems to make the general fatigue, muscle fatigue, temperature regulation, my immune system more acutely severe.
I suspect autism like traits, a hereditary fructose intolerance like disorder, some kind of carbohydrate metabolism/glycogen storage disorder, an acute Celiac like disease, lactose intolerance and allergies, chronic fatigue, muscle atrophy; myopathy, neuropathy, stroke like episodes (these have been confirmed by brain CT scan), body temperature dysfunction, failure to thrive, malnutrition, and underweight complications. I strongly suspect that the progressive nature and the latent onset of many of the various symptoms and their respective underlining disorder (not including the hfi) are perhaps all symptomatic of mitochondrial disease disrupting my enzymatic and Adenosine Tri-Phosphate (ATPs') production, distribution and quality.
I believe it is reasonable to suspect that the difficulties (not clotting) I encountered as the result of the fall and the misdiagnosis could have been aggravated by an underlining and the unknown condition; perhaps mitochondrial disease. It is plausible, to suspect that the traumatic experience of... also triggered or hasten the manifestation of the once dormant symptoms.
As I returned to the conventional medical system to seek some answers (I no longer had the personal funds to pay out of pocket medical expenses, because I hadn't worked outside the home since...) I applied for federal medical insurance;... which I qualified for and got.
I began seeing different physicians, and so I had to fill out preliminary paper work of my health history...complaints, allergies etc, and I don't remember ever being asked if I had food intolerance. I would always say and write down that I had a problem with gluten and sugar; fructose intolerance specifically. In spite of my emphatic warnings to nurses and physicians that I have serious problems with gluten, sugar and specifically fructose, since December of 2012 when I had a stroke like event and went to..., I have been prescribed medicine with sugar in it. Clonidine 0.01 mg was prescribed by the emergency room doctor who said he never heard of hereditary fructose intolerance causing hypertension.
Next was the triage doctor at..., who prescribed me a cocktail to "cure the h. pyloric virus" and this after I emphatically stated I had a problem with sugar...he smiled and dismissed me and ultimately my concerns. Not knowing this at the time, I took the medicines for about 2 days and had an adverse reaction. I carry cinnamon with me; which calms the initial adrenal response and allows me to get something to eat before the onset of the more critical symptoms of hypoglycemia. This particular time, I'd left my bag in the car, & as the symptoms only take a few minutes to get debilitating, I almost cudn't make it to the car to take the cinnamon.
The third time was with the colonoscopy doctor who implied some expertise on hereditary fructose intolerance. I wrote repeatedly on my paper work, stated to the doctor who would perform the procedure that I had a problem with sugar, specifically fructose. As the time came to have the procedure, I had the prescription filled, the instruction said you could have the solution flavored if you wished. I expected the doctor to take my emphatic concerns about sugar into account, but when I got the bag home and opened it, it was flavored. At this point I just wanted to get the procedure over with and hoped for the best. I took the first part and had an hypoglycemic reaction and drank some peppermint tea and home made chicken broth, that calmed the symptoms. After taken the second part, I didn't have a reaction but I took my glucose reading anyway, the meter read 38. This was confirmed at the doctor's office where the colonoscopy would be performed. The tech. took my reading and his meter read 23. He was speechless and obviously stunned. He said he never heard of let alone witness someone with such a low meter reading be so coherent. Still, the anesthetist refused to proceed until my blood glucose levels were sufficiently elevated. The tech. gave me an infusion of dextrose and after about an 1/2 hour a blood sample was taken which indicated a blood glucose level of about 84. This is noted in the doctors statement on the diagnosis/release form. My colon showed no indication of cancer.
As I did further research on the different pathways of energy/glucose synthesis and metabolism, it seems that over the years, perhaps my body figured out how to sustain cellular, brain and liver function sufficiently from the metabolism of the fat and protein I was eating. People who eat primarily only meat and meat fat, are able to utilize such ketones as their primary source of metabolic fuel. It is my understanding that this ketosis is different and not adverse to one's health as is the case with diabetes and starvation ketosis.
Please check out the above link/site for specific information on women with Asperger Syndrome...there are social and neurological difficulties (some specific to girls and women) that need special/expert consultation and support services.
The question of whether my health condition warrants medical and definitive diagnoses, I believe is self evident based on the aforementioned information and my personal statements.
That said, I strongly believe that all health issues warrants definitive diagnosis as is available and no matter the cost. Noninvasive diagnostic tools should always be considered first but if one's life and quality of life depends on an accurate diagnosis then great care should be taken when considering invasive diagnostic procedures but they should still be available to the patient and paid for by the insurance company, if the patient so desires to go that route.
Knowledge is self empowerment and furthers overall understanding of the how our bodies actually react to adverse health situations, whatever they may be. The more definitive diagnoses, the more accurate the rate of prevalence of the adverse condition. Knowing the accurate rate of prevalence will enable nutritional research and medical research to understand the behavior of the ailment, syndrome, disorder and or disease as it manifest in the population. With such information we can as a society work to provide healthier conditions and therapies for all patients.
In addition, diagnosing all conditions helps to prevent premature, narrow and thus arbitrary parameters of illnesses, disorders, and diseases. Utilizing arbitrary parameters (narrow diagnostic indicators not inline with the actual comprehensive medical research and field experiences of patients) for clinical diagnosis absolutely excludes many patients from receiving the health care they need and this is not patient advocacy.
Most clinicians had no or only very limited knowledge/understanding of my symptoms and the possible conditions associated with them. General lack of knowledge of very rare condition is not so much the problem (though there should be more of a willingness and time available for the physician to get informed enough to at least direct the patient to someone who does have more expertise. Perhaps the health and medical system should consider employing paramedic researchers. The law firms employ paralegals for research their cases to ensure success for their clients, perhaps the many premed students could offer the similar research support to physicians?
That said, the lack of knowledge/understanding with regards to the toxicity of sugar being implicated in metabolic diseases, which collectively are the number one killer and cause of adverse health in the United States these days, is I think, inexcusable. Every clinical practitioner (whether of internal medicine, specialist like neurology or clinical psychology or genetics) should be updated and well versed in the current research and implications that toxic levels of sugar are potentially having on their patients and the area of their specialty.
When applicable, nutritional medicine and the bodies natural defense mechanisms should obviously and logically be supported as the first and foremost therapies for all health concerns. In general, I believe that pharmaceutical therapies, invasive therapies, and chemical therapies should be secondary and last resort considerations. It would then seem most beneficial to all patients that our medical schools/Universities adapt to this realization.
Mitochondrial disease is another increasingly suspected cause of many prevalent diseases. If our clinical practitioner are not given the incentive, time and compensation to update their medical knowledge, to the current realities of health ailments, then all patient are placed at increased and unnecessary risk.
Giving such circumstances; premature, narrow, and thus arbitrary parameters of clinical diagnosis, as the dominating protocol for doctor's visits, absolutely acts as obstruction to needed nutritional remedies, medical remedies, social services, emotional support, patient peace of mind, financial assistance and the medical insurance that should be available to their patients.
Each suspected ailment that I listed has a certain prognosis, and treatment recommendations. Some of the suspected ailments have specific remedies that may conflict with each other. Three of the conditions are potentially life threatening. If for some reason I have to be hospitalize, and I'm giving gluten, fructose or carbohydratess via I.V. or food, I could die.
How can I physically work or concentrate at any job with the above physical condition and the ongoing PTSD? I personally haven't had substantial income work since 1997. How can I move forward with some dignity and some level of independence without sufficient income? If I cannot do substantial income work, then how might I qualifiy for disability income without definitive diagnosis?
The rate of the progression of my ongoing health difficulties seems to have slowed since eliminating gluten, fructose and all carbohydrates. That said, if I do have mitochondrial disease, what is my actual mitochondrial disorder, and which systems are actually being adversely affected? Should I exercise or not, should I eat to avoid the symptoms of the carbohydrates and gluten or should I eat to minimize energy loss?
Is my condition inherited from my maternal grandmother or is it acquired? Are other members of my family affected/at risk? Do I actually have some kind of glycogen storage disorder? How do I approach the weight issue? How do I get the support and services I may need to cope with all of these as well as the autistic like traits?
In order for me to continue to obtain and thus sustain what the constitution of the United States, proclaims that I am lawfully entitled to, that is my inalienable rights of life, liberty and & the pursuit of happiness, and to be treated equally under the law, where I am equal to the president of the United States as well as every congress member, Supreme Court judge and etc. with regards to these inalienable rights, then I cannot be denied such basic and necessary medical services, when it is the insurance companies responsibility, under the law, to provide such services.
Denying me access to medically necessary tests that would help me to ascertain what my future health and by extension the quality of my life might be (my prognosis) is in effect denying me my inalienable rights to life, liberty and the pursuit of happiness.
Lastly, what seems to be the protocol language utilized by many of the physicians that I encountered, " I don't think you have...." was an emotional deterrent to me in getting my concerns satisfied. It seemed to me that when the physicians did acquiesce to my suspicions that there was amble cause to pursue further formal investigation i.e. effective and as low risk as possible-diagnostic tests for my complaints/symptoms, I was given another "hoop to jump threw".
"What difference would a medical diagnosis make, the insurance companies won't pay unless it is medically necessary, it is not cost effective, it's not prevalent enough to be cost/profit conducive so we don't offer the tests."
I believe that I have effectively and sufficiently demonstrated that my request that my insurance provider, CountyCare should cover the cost for me to have the appropriate diagnostic tests done; and which are associated with my health difficulties. I believe that CountyCare is obligated to provide "out of network care" when necessary. I have researched legitimate and licensed labs and other medical institutions which do provide the diagnostic tests that I require. it is therefore my official request that I be referred to an effective practitioner, clinic, hospital and or medical facility that is qualified and does offer the needed diagnostic tools.
Lastly, as another suggestion, perhaps it would be more patient conducive, more patient advocacy like if the protocol questions at doctors' visits were, 'why do you think you have this condition, and would you like to have more information on your options for diagnostics tools and who offers them"?
terri a. Mccurdy
The Mutation of 'Catch 22'...
Without reviewing the story behind 'Catch 22', suffice it to say, the title reflects a current worst scenario.
Just yesterday, I was on the phone with my... She shared with me that her..., & was recently placed in hospice by the doctors who were attending.... The doctors claimed...was 'giving up'.
In short, my... went and removed... off of 'hospice' because... ...had applied for disability several times and was rejected each time'. It seems, the disability rejection was partially due to the fact no doctor would give...definitive diagnoses.
My...eventually got some definitive diagnoses for... When I heard the list, I was stunned by the length, complication and severity of his condition and almost immediately thought about my personal situation. I have been preoccupied with my own health issues since... Over these last 5 years my health has deteriorated significantly.
As I'd kept away from the conventional medical system since ...in response to a traumatic experience then, when I was 'forced' to reenter it in..., I was much foreign to the system. I really expected that being duly informed this time and with as much scientific medical knowledge of my symptoms would certainly be appreciated by the physicians I would need to see. I would make the process simpler for them by doing most of the research work myself. I listed my symptoms in chronological order, provided a chronological statement of my medical history, provided verifiable medical articles based on the most updated data on my symptoms and put all of this in a personal medical profile.
I was confused at first, and then later astonished at the lack of knowledge and seemingly the lack of willingness to become informed, and then frustrated and discouraged by the physicians who attended me and are attending me. Let me say though, that I am achieving progress and good results via the clinical psychologist that I am seeing.
The enclosed letter was emailed early Thursday or Friday morning to my medical insurance provider, ...- part of the federal medicaid program.
After listening to my... about..., an epiphany-like scenario popped in my mind. Could it be that 'too many people' are having to apply for federal disability income? Is the system (medical institutions, big pharma, medical insurance companies, corporate-agriculture, and doctors) all collaborating to discourage people from getting diagnoses so as not to be able to qualify for federal disability funds? Would they rather discourage diagnoses and delay treatment in hope that many just concede and die in hospice, because federal disability funds are not sufficient to cover the impending need of these next several years?
Has 'the rooster come home to roost'? Has the USA's capitalistic greed-profit driven corporate-agriculture cut off the hand that feeds it? It is my strong opinion that in effect, the USA's 'food supply' has been so altered from it's nutritional origins, that it is tantamount to moderate to extreme doses of poison. I assert that the food that has been most potent and most harmful to the overall health of not only people living in these United States but also abroad, where we export our food-like stuff to other societies, is refined/processed sugar-carbs.
As long as people maintained symptoms that could be covered up with pharma drugs and every 3 month have a 15 minute visit with a doctor, requiring relatively low costs tests, and the people kept relatively functional to supply the national work force, all was as it should be. Has that formula for profit (for big pharma, big hospitals, big insurance companies, and corporate-agriculture) been disrupted, threatened? I think, perhaps it has.
The levels of sugar consumption, high fructose corn syrup, artificial sweeteners, as well as sugar's bred micro-gram potency is continually implicated in many recent medical research studies, as being a toxin to the human physiology, and likened to ethanol with regards to its addictive nature. Sugar is implicated as the main underlining cause of metabolic syndrome, the number one killer and cause of most ailments, diseases; and in my opinion, the underlining cause of many genetic disorders in the western hemisphere.
The sugar industry has seemingly 'been flying under the radar'. It is not as self evident poisonous as gasoline fumes and cigarette smoke or as apparently damaging as carbon based fuels to the environment. Yet, it seems to have the loudest warnings against it in the medical research these days. I sense that it is perhaps, quietly fighting behind the scenes to maintain its insidious dominance in the world's economy. The following are requests/demands by various concerned persons...
-High fructose corn syrup should be banned as a highly potent toxin.
-Sugar content levels restrictions should be established and enforced by law.
-Foods should be bred to reduce sugar content back to healthier levels.
-All sugars should be listed/labeled by their specific name and characteristics on all packaging and accompanied by a health warning.
Sugar and carbohydrate metabolism disorders are on the rise, if not already in epidemic or even pandemic ranges worldwide.
Mitochondrial (the energy source of life) disorders, are much more prevalent then clinicians want us to believe. It is my assertion that sugar is the primary chemical-toxin, that is and has been able to infiltrate the mitochondria and cause the rising genetic mutations now implicated in many prevalent diseases from Alzheimer to Autism.
I'm fighting for my life and my quality of life as is my best friend's brother. I believe we are of a growing majority. It is my hope that these assertions and questions may be effectively investigated and resolved while we all still have the breath of life flowing through us. If it is feasible, please do what you can to shine an appropriate light on these issues.
Sincerely yours with infinite appreciation and gratitude to you all,
Terri A. McCurdy
terri a. Mccurdy
medclly ncssry prt 2 cnnctng th dots
Medical necessity is a legal concept which refers to the health care services or products provided by a physician to a patient. It is provided for the purpose of preventing, diagnosing, treating an injury or disease in accordance with generally accepted standards of medical practice. Health insurance contracts contain agreements to provide medically necessary diagnostic and treatment services. Generally, insurers will not pay for treatment unless they consider it to be medically necessary.
Medicare defines "medical necessity" as services or items reasonable and necessary for the diagnosis or treatment of illness or injury or to improve the functioning of a malformed body member.
The following is an example of a State Statute (California) on medical necessity:
Cal Wel & Inst Code § 14059.5. "Medically necessary" or "medical necessity"
A service is "medically necessary" or a "medical necessity" when it is reasonable and necessary to protect life, to prevent significant illness or significant disability, or to alleviate severe pain.
This definition represents a legislative judgment that the medical services provided be restricted to those cases where they are most needed. [Holmes v. Kizer, 11 Cal. App. 4th 395, 402 (Cal. Ct. App. 1992)]
A stairway chair lift qualifies as "medical" equipment under this definition because it prevents significant disability, and is reasonable and necessary to protect life or prevent injury such as the injury Blue suffered while attempting to use the stairs without a chair lift. [Blue v. Bonta, 99 Cal. App. 4th 980, 989 (Cal. Ct. App. 2002)]
As previously stated the current "treatment" for hfi is to abstain from ingesting fructose and sucrose. The unique situation with hfi sufferers is that abstaining completely is almost impossible unless you also avoid all carbs. Unfortunately, even if all carbs are avoided in one's personal life/diet, the real and more risky danger comes from the medical system itself. The threat of an inadvertent fatal to significantly harmful fructose challenge for undiagnosed persons is not from everyday life. In as much as our food supply is inundated with sugar/fructose; medical treatments, therapies, prescriptions are even more so. The scenarios/circumstances involving medical fructose intoxication could be more severe then in one's everyday life.
In view of the many medically caused inadvertent fructose challenged fatalities referenced by the Boston University Adolase Lab website, a more complete essential medical treatment to prevent such risks of death and other bodily harm, is a diagnosis. Therefore, for hfi sufferers and other carbohydrate sufferers, a definitive diagnosis is most necessary so that they may eliminate the risk of a medically caused fructose challenge fatality or medically caused injury or worsening of the hfi sufferers condition.
In this light, in order to prevent such a risk of death or significant harm, diagnosis must be made before such circumstances arise. Hence, diagnosis in the case where it prevents the risk of death and or undue harm to the sufferer of any illness, diseases, disorder etc, is in effect the medical treatment which will make a huge difference and thus is medically necessary.
I am again requesting that...pays for my diagnostic tests for one or more of the HFI (Hereditary Fructose Intolerance) disorders and for Mitochondrial disease.
I shall submit these statements to my physicians and request that they formally submit them to you again on my behalf as part of my official medical records.
Terri A. McCurdy
terri a. Mccurdy <firstname.lastname@example.org>
i have chronic debilitating symptoms that cannot be remedied through the conventional medicine service protocols of the...medicaid insurance program. i feel as though i have to jump through hoops for the gate keepers in order to get effective health care treatment.
i have personal experience with the current medical system as it is practiced in the... i have needs, tests, and specialists, that i don't have access to simply due to the lack of funds.
i would fill out the online form for a grant but i do not qualify because i am an individual and not a public or not-for- profit organization.
i was quite healthy prior........ and decreasingly so thereafter. i greatly appreciated my health and what it afforded me. i was able to serve others in various ways. i was very independent and dependable. i have never been a smoker or a regular drinker of alcohol. i ate organic foods, exercised regularly and spent lots of time working outdoors in the dirt.
today, i have to ration my weekly allotment of energy between cooking a most restrictive diet, eating it 4-5 times daily, a few morning chores, visiting my significant other, spending time with my daughter, going to my 2-5 monthly doctor's appointments, and driving my mother to her appointments and her shopping errands.
where i once spent every waking hour helping and serving others or teaching or taking care of my home, inside and out, now i have to spend the great majority of my time sitting with my legs elevated, lying down or sleeping.
i've acquired various symptoms that included testing positive for h. pylori bacterial infection, severe hypertension, severe hypoglycemic episodes, abnormal liver function tests, rising alphafeto protein levels, as well as chronic fatigue and exercise/exertion intolerance. in the past, the only way that i was able to gain weight was by weight lifting/training. due to my progressive inability to effectively digest/metabolize carbs of any kind & because i can no longer exercise as i had, i seem to be struggling to maintain a 100lbs and i'm 5' 7".
in addition, i suffer from various neurological difficulties, perhaps asperger-autism like traits, and psychological problems that my clinical psychologist is helping me sort through.
among which, she is exploring ptsd, anxiety, & disassociative identity disorders.
i've been applying for ssi supplemental income through an organization called quikaid out of florida, since late 2013, i believe. i've been denied 3 times; they are waiting for a arbitration hearing.
i believe that if my initial interview/appointment with the primary physician back in 1997 had been more thorough, included a follow up xray of my thoracic area, that i may not be in such dire straits today.
i bled internally for about a month and a half, all the while going to several follow up appointments and muscle spasm treatments. i believe that if my diabetic like episodes/life long progressive hypoglycemic issues and chronic low blood sugar levels had been given more scrutiny, i may not be in such dire straits today.
i believe that if girls were given more attention with regards to social and learning differences and difficulties, perhaps i wouldn't be in such dire straits today.
if my g.i. doctor had simply asked me, "why do u think u might have mitochondrial disease or some genetic disorder... and let me look into it", rather than just saying, "i don't think u have that", perhaps i wouldn't be in such dire straits today.
if the emergency room doctor back in 12 2012 and subsequently the triage doctor at the ambulatory clinic and after that, the doctor who performed my colonoscopy, had respected and took my emphatic statements that i had a severe problem with digesting sugars seriously, perhaps i wouldn't be in such dire straits today.
if the united states government did not support proven harmful nonfood items as food, i.e. refined sugar, high fructose corn syrup, perhaps i wouldn't be in such dire straits today.
if the united states government took proper responsibility (provided effective not-for-profit health care for all ailments connected to the ingestion of refined sugars and synthetic sugars) for allowing the refined sugar industry to operate with impunity, then perhaps i wouldn't be in such dire straits today.
if the united states government understood that health care is not guaranteed when medical equipment services, clinics, hospitals, physicians, pharmaceutical companies, labs and researchers are competing for funds and that their primary concerns are to their own comfort/luxury and their share holders luxury; that is profit margins then perhaps i wouldn't be in such dire straits today.
proper treatment has necessarily taken a back sit to profit treatment with regards to conventional medical protocols. diagnostic testing is routinely denied for illnesses that are said to have "no medical treatment". if such testing is not done how does the sufferer explain their difficulties/ailments, to family, employers, or on disability applications? how do they protect themselves from conflicting adverse medical treatment when they have complications?
fructose or any carb intolerance must be known and acknowledged by the attending nurses, techs and physicians so that the principle of "first do no harm" may be effectively honored.
such medical bracelets should be made avaiable to those who suffer these conditions to prevent further harm, particularly from medical providers.
why do the vast majority of the most used pharmaceuticals contain sugar? why is hospital food primarily refined carbs?
how can a ailment be properly treated if it is not properly understood? how can the ailment/condition be properly understood if it is not definitively diagnosed and an accurate prevalence rates and medical context established?
if obtaining health care is so costly then the united states government ought to be about proper illness prevention measures. i remember thinking to myself as a young girl, if i can't afford their healthcare or insurance, then i can't afford to get sick. well, that plan was working, but not any more.
the age of internet access has afforded many non experts access to pertinent information that enables us to be more informed and proactive in our health treatment decisions. the current system must accommodate this fact.
ironically, nutritional health, nutritional medicine is making a comeback. our first medicine is what we ingest and actually are able to digest. the current "pharma-cut it out-radiate it or ignore it" must give way to the reeducation, of all in the service and purpose of actual healthcare, to primary proven nutritional remedies. the united states government has to regulate and protect real food from being continually replaced with low to no real nutritional benefit food like stuff.
lastly, a system of paramedics in the vein of paralegals, may be established to assist clinicians in researching the latest available and pertinent data regarding their particular patient's complaints, symptoms and underlying causes.
these suggestions if and when implemented would truly transform our current poorly performing thus costly and inefficient national "for-profit- treatment" medical system into an effective, efficient and compassionate national healthcare system. this system would become a model to others who value a sustainable healthcare system.
if you have any references that i may contact to possibly acquire individual grants for help with needed medical costs, i would be very grateful.
thank you so very much for your patience and time.
tales from within the whale... catch 22 continue...
i had been researching my symptoms since about 2009. when i had the transient stroke like incident in..., i knew i had a severe problem digesting sugars; particularly fructose. i told this to the attending physician. i also mentioned to him that i had not ever been on bp meds and only recently acquired hypertension. i shared with him that i had pretty much taken salt out of my diet and about the connection between fructose and hypertension that i read about in medical abstracts. he stated, he had no knowledge of such a connection.
as stated before, every physician that prescribed pharmaceuticals to me, prescribed ones containing sugar, (an "inactive ingredient") and this after i repeatedly told them that i had a severe problem with digesting sugars. after seeing the triage doctor, who prescribed a cocktail to eradicate the then diagnosed h. pylori infection, i had a significant hypoglycemic episode. he had totally dismiss any concerns i tried to share with him. i looked up the ingredients and one advised the user to let your physician know if u had problems with sugars; as it had significant amounts of sugar.
what use is it to emphatically insist and repeatedly state such facts if the physicians dismisses your concerns?
i began to put together a personal medical profile/history. i tend to have panic attacks (some quite apparent, others, not so much, when i go to my doctor appointments.) i figured this would help me communicate and substantiate my health concerns to the medical people.
if the pcp clinicians had the updated science on h.pylori and it's association and connection to mitochondrial disease symptoms and the low platelets connection was explained to me, h. pylori bacterial infection could have been more aptly investigated and seriously considered as a reasonable cause of my symptoms/condition(s). proper/safe pharmaceuticals could have been investigated and perhaps my condition more effectively and appropriately managed/treated back in 2013.
i found a community clinic and eventually applied for state medicade through them. after explaining to the primary care physician what i thought were my general difficulties and concerns, and this based on my symptoms and medical history, he was not having it. eventually he made a statement that he does not work as a partner with his patients.
i found another pcp. my medical profile was quite extensive. i believe that back in 2013, if the pcp had really taken the time to look over my medical profile and the research that i had included, a full genetic panel would have/should have been ordered then. if a full genetic panel based on my symptoms, complaints and medical history, had been the protocol, i would not have had to suffer through 3 more years of carb intoxication. the on going carb intoxication substantially increased the rate of the system wide physiological, neurological and psychological deterioration. if a full genetic panel test had been made available to me, i would now know whether or not to follow up with my suspicions about my daughter perhaps suffering with similar ailments and as well as with other relatives on my maternal grandmother's side of the family.
if people with complaints and symptoms indicating that they have food intolerance disorders, were properly tested, my g.i doctor would not have been able to used the misconception statement that such conditions are too rare to be cost effective. in other words not profitable enough or able to generate enough revenue for the hospitals, insurance companies and pharmaceutical companies. it's not financially beneficial to offer such tests routinely to patients who present with the symptoms that clearly indicate a need for diagnostic testing.
instead, they had me jumping through hoops (the gate keepers). and they in effect blindly (not bothering to look up for themselves, what the latest and most credible research was saying about my symptoms and possible causes) prescribed harmful drugs to me.
it's taken all of this time and suffering to learn that for some reason my body has progressively lost its capacity to properly/safely metabolize carbs. i seemingly cannot safely eat/consume any plant food, any derivative of any plant food, any sea food, animal, marine food or drugs that contain significant amounts of carbs. significant being more or less than 1g. i have to say "seemingly" because im not sure what is actually going on with my physiology. ive not been properly tested to pin point my exact condition or to at least eliminate what is not the problem. at this point, i cannot safely take any pharmaceuticals because no one knows exactly what's going on with me or how such pharmaceuticals would effect my undiagnosed condition(s).
if all of the (about 20) physicians that i have seen since 2009 were able to confer with one another and had access to the latest scientific findings relevant to my labs, symptoms and medical history, i strongly believe i would more likely have an appropriate and effective and thus efficient path to the most effective and appropriate management and treatment of my condition(s).
im a whole person whose physiology, neurology, and psychology are totally integrated. i cannot be properly treated if i am constantly being treated in compartmentalized isolation.
it is my hope that by sharing with you my personal experiences of striving for effective and appropriate health care, you would be better able to help all of us, who are fighting for such health care from within the system.
thank you again for your time and patience.
terri a. mccurdy