posted
6-8-06 Added my 1st set of labs I typed; somehow, they went to never-never land; so I'll just copy/paste them right up here at the top for NEW info.
Lab results for MDL in NJ, for 15 blood tests. I'll show ABNORMAL only.
labs suppuration of CHRONIC ACTIVE HHV6.
1. EBV-VCA IGG/IGM by Elisa; IGG POSITIVE = 5.40, little high.
BUN/creatine ratio 31 HIGH DEHYDRATED; normal to 27
Potassium, serum 3.2 LOW; low 3.5 - 5.5 high MED RX potassium K-DUR 20 meg ; 1 daily; refrigerate after opening!
CRP, c-reactive protein, CARDIAC 35.40 high; normal to 3.00 Relative risk for future cardiovascular event
Dehydroepiandrosterone, DHEA-SULFATE - 23 low; low is 26 Then came this surprise statement on this lab slip at the top!
LAB CORP - Comment: "in the context of a TRANSPLANT, labcorp strongly urges timely consultation with an HLA knowledgeable transplant physician or other HLA transplant professional for the appropriate clinic interpretation of a match between patient and potential donors.
Dr. V, this statement scares the hell out of me not knowing what in the world they are talking about; which organ? Please have someone explain this briefly to me please.
I emailed promptly to Dr. V's front desk; 1 hr. later I had a return email. The got everything straightened out with LabCorp; "I will not be billed for a test run in error!" So watch your bill/lab slips carefully folks! I was really trying not to panic, but it works on the sub-conscious!
With enclosure from Dr. B explaining CD57, natural killer function. "Used to help determine how ACTIVE THE INFECTION IS, how well the treatment is working, and whether after treatment ends, a relapse is likely to occur! This is how it works!
Chronic Lyme infections are known to suppress the immune system. The lyme spirochete can affect ALL MAJOR CELL TYPES of the immune system, but it most clearly can impact a specific subset of the natural killer cells. This is called the CD-57 subset.
Just as in HIV infection, which suppresses T-Cell counts, lyme suppresses killer cell counts. As in HIV infection, where abnormally low T-Cell counts are routinely used as a marker of how active the infection is, in lyme, we can use the CD-57 count to indicate how active the lyme infection is.
When lyme is ACTIVE, the CD57 count is suppressed. We currently are having our tests run by LAB CORP, a SPECIFIC CALIFORNIA BRANCH OF LAB CORP RUNS THIS TEST.
At this lab, the expected range for the CD57 count is ABOVE 60.
In my experience, those who do NOT have lyme, or those who are CURED of their infection, typically have counts ABOVE 180!
However, in the chronic lyme patient, CD57 counts are usually WELL BELOW 60.
This test can be run a the start of therapy, then EVERY SEVERAL MONTHS to document the effectiveness of treatment. One hopes to see a rising trend over time.
When antibiotic therapy is finally at an END, if the CD57 count is NOT in the normal range, than a lyme relapse is MORE LIKELY TO OCCUR.
Because at this point, we believe that only BORRELIA will affect the CD57 this way, a sick patient with a HIGH CD57, is probably ill with SOMETHING OTHER THAN LYME, SUCH AS A CO-INFECTION.
------ BEFORE you have a CD57 test run, BE SURE IT WILL BE SENT TO THE PROPER BRANCH OF LAB CORP. Otherwise, they probably will do the WRONG TEST, wasting your MONEY AND TIME!
SUMMARY FROM DR. V. of our 3 hr. thorough exam:
fyi ..Came in very small type, so Betty asked them to send results as an attachment minus her date of birth & she'd copy to word processor making font larger, type size, & breaking up long paragraphs later in report. No can't do that; we'll have someone enlarge for your eyesight. FYI, future Dr. V patients!
Chief complaints: photosensitivity/sound sensitivity; pain; irritable bowel/bladder, and debilitating fatigue.
Diet history: She does eat foods w/partially-HYDROGENATED vegetable fat & was unaware of the dangers of that!
Allergy history: Symptoms are worse in spring and feels better when cloudy days occur. Craves: dairy, pasta, peanut butter, corn chips, jelly, corn, and potatoes. Diarrhea occurs w/watermelon and pizza. Gas from baked beans. Sensitive to dust, diesel, & scents.
Meds I got down from 19 to 13 at the time I saw Dr. V. Other medical illnesses: she listed 21, and my 12 surgeries.
YEAST OVERGROWTH score: POSITIVE; more than 130 is positive; Betty's s 334!
Oropharynx reveals, thick, white coated tongue consistent with oral candidiasis.
Multiple amalgams noted; teeth in good repair.
Parasites: may be at risk with history of working on a farm.
Skin: itchy rash behind her ears. Gets rash on her forearm that has been diagnosed as LUPUS.
Neurotoxin symptom survey: possible exposure to mold in bedroom and basement. Husband has tremors, high risk for stachyboitius; has lyme disease. No history of a tick bite.
Unaware of a rash.
VISUAL CONTRAST SENSITIVITY, VCS, test is POSITIVE, and neurotoxin symptom score is positive.
BECK INVENTORY - only positive for 2 psychological and 19 physical symptom
ASSESSMENT:
CFIDS, chronic fatigue immune deficiency syndrome, fibromyalgia pain with contributing factors including the following:
ALLERGIES
I suspect both inhaled, environmental and ingested allergies are playing a major contribution towards impaired immune response based on history, physical exam.
Will check on this in several ways with the ELIMINATION DIET, with Meridian Valley food sensitivities, and wit the Entero Lab for fecal antigliaden, fecal antitissue transglutaminase, and fecal fat.
Also will check the CDSA STOOL test for malabsorption of fats, carbs, and proteins.
In my experience, problems with ingesting foods that one is sensitive to causes something called "LEAKY GUT SYNDROME" in which UNDIGESTED PROTEINS pass thru the barrier from the digestive tract into the blood.
These toxins are identified as enemies and the body makes antibodies against it. It is often associated with other autoimmune disorders; such as, HASHIMOTO'S THYROIDIS and lupus.
She has evidence of LUPUS with her skin rashes.
She also has had evidence of HASHIMOTO'S THYROIDITIS with symptoms of HYPER & HYPOthyroid over the years.
2. MALNUTRITION with chronic malnutrition for a number of years.
i Suspect she is going to have nutrional deficiencies, possibly HEAVY METAL TOXICITY which will be tested for.
3. INFECTIONS; mononucleosis and lyme disease have definitely contributed.
Also in my experience, people with PENICILLIN ALLERGIES are very allergic to molds of ALL types.
She has chronic yeast growing in her DIGESTIVE TRACT and in her vagina historically.
These molds can make micro toxins and can add to her illness.
---->< In addition, symptoms of CHRONIC SINUSITIS are probably contributing, especially STAPH COAT NEGATIVE can cause neurotoxins causing ALL OF HER SYMPTOMS!
HORMONAL IMBALANCE WITH MENOPAUSAL SYMPTOM & HYPOTHYROID. History of endometriosis. FYI, There is a study done in monkeys with exposure to dioxins which cause endometriosis. ENVIRONMENT DIOXINS can be contributing.
SLEEP DISORDER WITH SLEEP APNEA AND RESTLESS LEG SYNDROME "UNTREATED".
Other medical illnesses: Diabetes; Scoliois; Arthritis; Neuropathy presumed due to RADICULOPATHY IN HER SPINE; Hyperlipidemia; Hypothyroid.
PLAN: She is going to do the ELIMINATION DIET. Lab work is ordered and will come back to her.
She is going to look thru her house; do a MOLD ELIMINATION.
She needs help with bathing and housework.
Hopefully, her primary care MD will order this. She no longer can get out of our tub; we don't have a shower.
Dr. V copied my PCP. uffda...done typing!
Betty's original post about her personal feedback from her April 20, 06 visit in Minn. On how the 3 hr. visit went:
****************************** 6-5-06 -- adding the TOTAL costs medicare PAID for 4 lab results grand total of $ 3960.50.
IGENEX, Calif. = $ 905.00
MDL, NJ = $ 1390.00 " " $ 1100.00
Sprectra cell lab = $565.50 $ 51.50 NOT paid by medicare or BCBS..unknown for what?
These were the prices for the work done on me 4-20 and early May 2006! Betty ---------------------
5-26-06, "FINAL" LAB REPORT from Betty's new LLMD 4-20-06 appt.
GENOVA, GREAT SMOKIES LAB, ASHVILLE, NC *************************************** Comprehensive DIGESTIVE STOOL analysis 2.0 INTERPRETATION at a glance:
Diagnosis: INTESTINAL DYSBIOSIS Beneficial bacteria: LACTOBACILLUS SPECIES showed NG, no growth; BIFIDOBACTERIUM was 1+ Comments: Beneficial flora controls potentially pathogenic organisms, influences nutrient production, REMOVES TOXINS from the gut and stimulates the intestinal immune system, GALT.
The composition of the colonic flora is affected by diet, transit time, stool ph, age, microbial interactions, colonic availability of nutrients, bile acids, sulfate and the ability of the microbes to metabolize these substrates.
Ideally, levels of lactobacilli and E coli should be 2+ or greater.
Bifidobacteria being a predominate anaerobe should be recovered at levels of 4+.
MYCOLOGY
YEAST, not CANDIDA albicans, non-pathogen, 1+.
RHODOTORULA species, non-pathogen, 1+
Organisms that full under this category constitute part of the normal colonic flora when present in small numbers.
They may however become potential pathogens after disruption of the mucosal lining, which enables fungi to colonize and establish a local infection. -********************************
ADDITIONAL BACTERIA:
KLEBSIELLA OXYTOCA, NON- pathogen, was 1+. MORGANELA MORGANII, NON- pathogen, was 3+.
Non-pathogen: organisms that full under this category are those that constitute normal, commensal flora, or have not been recognized as etiological agents of disease.
POTENTIAL PATHOGEN .. LLMD HIGHLITED:
Organisms that fall under this category are considered potential or opportunistic pathogens when present in heavy growth.
************************* 5-22-06 ADD LAB REPORTS FROM BETTY'S NEW LLMD 4-20-06 APPT.
HEMEX LABS, Phoenix, Arizona **************************** ISAC PANEL - COAGULATION ONLY FIBRINGEN - 580 HIGH, hi is 310 T/ AT complexes 0.8 LOW, lo is 1.0
An ISAC panel, which consists of FIB, F1+2, TAT, SFM, AND PLAT ACT BY FLOW, is considered POSITIVE FOR LOW LEVEL activation of coagulation if 2 or more of the component results are ABNORMAL.
During anticoagulation therapy, interpretation of results requires clinical correlation. LLMD WROTE, POSITIVE ISAC - CONSIDER TREATMENT
GENOVA DX / GREAT SMOKY LABS, Asheville, NC ******************************************* NO caffeine clearance since my NO DOZ pill didn't show up! Plasma CYSTEINE 4.42 HIGH; hi to 3.9 Plasma sulfate 4.70 low, lo 4.80 Acetaminophen glucuronide % recovery is 7 LOW, low is 27 Plasma cysteine/sulface ref. Range is HIGH 0.94, hi is 0.78
Free radical markers: Catechol close to HIGH 0.035; hi is 0.040 GLUTATHIONE PEROXIDASE LOW 11.9, lo is 20.3 Superoxide dismutase LOW 1,400; lo is 1,610
Caffeine level is greater in 2nd saliva sample. This may be to additional caffeine intake or MISLABELING of tubes. Caffeine clearance could NOT be reported.
To the patient from lab:
Our bodies must be able to detoxify, or neutralize, toxins from the external environment as well as those produced within our own bodies. This process takes place mostly in the LIVER, and consists of 2 phases.
PHASE 1 toxins are activated, which means that they are altered in such a way that carrier molecules, phase 2, are able to transport them out of the body.
A handy analogy is the bagging of our trash, phase 1, so that the garbage man can pick it up and cart it away, phase 2.
PHASE 1 is accomplished by a family of enzymes called ``cytochrome P450'', and phase 2 takes place via a number of important mechanisms, 4 of which we measure in this test, with the help of the challenge substances, caffeine, acetaminophen and aspirin.
Both phase 1 and 2 of detoxification must function adequately so that toxins are able to be neutralized, and the 2 phases must be in balance with each other so that the activated compounds from phase 1 cannot accumulate in the body and cause damage.
In your particular case, some phase 2 pathways ARE UNDERFUNCTIONING. This can significantly impair the body's ability to clear compounds. There is also some evidence of LOW ANTI-OXIDANT RESERVE. Anti-oxidants help to counter excess free radical activity in the body, oxidative stress, which in your case is present to some degree.
Free radicals are highly reactive molecules capable of causing tissue damage in a chain-reaction fashion in the body.
With nutritional support, these kinds of imbalances are usually correctable. Following is a detailed description of your results.
TO THE CLINICIAN:
Plasma cysteine is elevated, while plasma sulfate is depressed. This suggest that the body is having some difficulty generating sulfate from cysteine, sulfoxidation..
This has results in an elevated cysteine/sulfate radio. This impairment may be due to a genetic enzyme defect or molybdenum insufficiency, and has been observed in some patients with:
Rheumatoid arthritis and neurological diseases; such as, Alzheimer's Parkinson's disease, and motor neuron disease.
Ensure availability of cofactors for cysteine's metabolic pathways, including molybdenum, magnesium, vitamin B6, and pantothenic acid.
Insufficiencies may result in the accumulation of cysteine.
NOTE: Phase 1 & 2 ratios which lie below the reference range will NOT be discussed within the commentary text, even though they may appear in the red boxes labled ``abnormal''. At this time we have NOT found sufficient information to consider them clinically significant.
Among the phase 2 pathways, GLUCURONIDATION IS UNDERFUNCTIONING.
This can result in poor detoxification of many compounds in the body, particularly many medications.
This may reflect nutrtional inadequacies and/or genetic uniqueness.
Elevations of either catechol or 2,3 DHBA indicated HYDROXYL RADICAL ACTIVITY IN THE BODY. This may reflect excess free radical production, inadequate antioxidants, insufficient nutrient cofactors for SOD, SUPEROXIDE DISMUTASE, and/or excess iron or copper in the body.
Free radical damage is thought to underlie many pathological processes; such as:
The level of SOD, SUPEROXIDE DISMUTASE was found DEPRESSED.
The body utilitizes this enzyme to rapidly convert the superoxide anion radical to hydrogen peroxide, which is less toxic to cells.
Mitochondrial SOD requires MANGANESE for its activity, while the cytoplasmic form REQUIRES COPPER & ZINC.
Reduced levels of SOD have been noted in several disorders;
Including rheumatoid arthritis, CATARACTS, infertility, and compromised immune function. Low level indicates poor defense against the superoxide anion radical, thereby increasing the risk of free radical damage.
Glutathione peroxidase, GSHPx, was also found DEPRESSED.
GSHPx represents another important front-line enzyme of the antioxidant defense team, using glutathione and selenium to help dispose of hydrogen peroxide and lipid peroxides.
Low levels of GSHPX are associated with a higher risk of oxidative damage in the body, and have been observed in disorders associated with free radicals,
including alcoholism, cancer, atherosclerosis, rheumatoid arthritis and CATARACTS, as well as selenium insufficiency.
Maintaining optimal levels of glutathione, selenium, and ALL ANTIOXIDANTS can help shift the balance away from oxidative stress. **************************************
5-20-06 additional lab results received today
NEURO SCIENCE , NY ****************** Results: LOW – epinephrine, dopamine, serotonin ELEVATED - PEA and histamine Normal – norepinephrine
RECOMMENDATIONS these supplements: 1. Adrecor 2. ENDOPLUS 3. SERENE PLUS 4. SANOX 5. BALANCE-D Retest in 4-6 weeks after beginning therapy or sooner if needed.
PHASE 1 & 2; is designed to support inhibitory neurotransmitter levels; such as GABA, serotonin, and taurine.
During this phase, anxiousness, depressive, or sleep related symptoms could be expected to IMPROVE.
Initial nausea, vomiting, or GI upset may occur but is only a temporary response and can be addressed through dosage adjustment or buffering supplementation with food.
Designed to last about 2 weeks but extending phase 1 may be necessary IF patient is still experiencing noticeable OVER STIMULATION OR RESTLESSNESS.
PHASE 1 and 2; generally continues until neurotransmitter levels have been optimized and symptom resolution is achieved, and usually takes months.
During this phase dosages may be manipulated to achieve results. This is followed by a transition into phase 3 of treatment.
PHASE 1 and 2; is important for maintaining adequate neurotransmitter levels. Without continued supplemental support, transmitter levels will revert to baseline values resulting; clinical symptoms MAY REAPPEAR.
Serene Plus contains 5-HTP and theanine, and is used to raise serotonin and decrease excessive neurotransmitter activity.
Sanox contains 5-HTP and theanine To maintain serotonin levels and Decrease excessive neurotransmitter activity. As well as TYROSINE to support catecholamine levels.
Balance-D is a purified Mucuna preparation that contains L-dopa. Used to increase dopamine, norepinephrine, and epinephrine
There was a NOREPINEPHRINE/EPINEPHRINE RADIO chart: Comments shown in the chart are:
>12 - stress, tiredness, low energy & motivations, burnout, poor concentration .... NOTE: boy, they hit that right! Betty
ENTEROLAB, DALLAS, TEXAS ************************** Results: gluten sensitivity stool & gene panel complete 12 HIGH – FECAL ANTIGLIADIN IGA; interpretation of fecal IGA: Intestinal IGA antibody was elevated, indicating that you have ACTIVE DIETARY GLUTEN SENSITIVITY.
For optimal health, resolution of symptoms and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues :
Like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among other;
It is recommended that you follow a strict and PERMANENT GLUTEN FREE DIET. It's genetic; your relatives should screen too.
NO evidence of a gluten-inducted autoimmune reaction.
NO malabsorbed dietary fat in stool indicating that digestion and absorption of nutrients is currently normal.
INTREPATION OF FECAL ANTI-CASEIN, COWS MILK,
IGA antibody: This was 7; BELOW normal.
Under 10 indicate there currently is MINIMAL OR NO REACTION to that food and hence, NO direct evidence of food sensitivity to that specific food.
1-500 people can NOT make IGA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the LACK of a significant antibody reaction because the reactions primarily involve T cells.
If you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a STRICT REMOVAL OF SUSPECT FOODS from your diet for up to 12 MONTHS despite a negative test.
INTERPRETATION OF HLA-DQ TESTING
HL gene analysis reveals that you have ONE of main genes that PREDISPOSES to gluten sensitivity and celiac sprue, HLA-DQ2.
Each of your offspring has 50% chance of receiving this gene from you, ant least one of your parents passed it to you. NOTE: I’m sure this was Dad, but he didn't know he had it either! Betty
You also have a NON-CELIAC gene predisposing to GLUTEN SENSIVITY, DQ1.
Having one celiac gene and one gluten sensitive gene, means that each of your parents, and ALL of your children if you have them, will possess at least one copy of a gluten sensitive gene.
Having two copies also means there is an even stronger predisposition to gluten sensitivity that one gene and the resultant immunologic gluten sensitivity or celiac disease may be more severe.
Trying one last time to get this to post...found ONE parenthesis I didn't catch earlier! ----------------------------------------
Received the following today, 5-18-06 from my LLMD:
Meridian Valley Lab, Renton, Washington **************************************** 1. Testing allergies for 95 things: High ones shown were:
2. Cow's MILK..only one in SIGNIFICANT/super high range! 3. Casein 4. Lactalbumin? 5. American, Cottage, & Swiss Cheese 6. EGG WHITES 7. GLIADIN higher than the glutin! 8. GLUTIN 9. WHEAT 10. Garlic...which I use garlic salt galore on my air popped popcorn w/butter! 11. My favorite watermelon is PENDING!
Meridian also included a 4 page FOOD ALLERGY/SENSITIVITY handout written by Sally Rockwell, PHD. Brief summary below for others wanting to understand more, like me! We’re learning together.
4 R-s; 4 basic steps to recovery
REMOVE the foods that are robbing you of energy and vitality.
ROTATE remaining foods to prevent new allergies rom developing.
RE-INTRODUCE the omitted foods and note how your body responds.
RECORD REACTIONS; a food and symptom DIARY will be your progress report.
IGE response; immediate food hypersensitivity. You must avoid this food FOR LIFE! No matter how long that food is avoided, a reaction may result when it is eaten again.
Normally reactions occur minutes after eating the food. Antibodies often appear as soon as the food is eaten again. EXAMPLES - PEANUTS; STRAWBERRIES, & SHELLFISH.
IGG response - delayed food hypersensitivity.
IGG responses may caused delayed symptoms, such as joint or muscle pain, chronic headaches or fatigue.
May lead to chronic/long-term symptoms and chronic degenerative conditions and chronic inflammation.
Takes 3 - 9 months for antibody level against that food to DECREASE significantly.
When eaten INFREQUENTLY in a rotation diet, they seldom have to be avoided for life!
ELIMINATION, ROTATION, AND RE-INTRODUCTION OF PROBLEMATIC FOODS
IGE mediated allergies tend to be FIXED; thus required avoidance is usually life long!
IGG mediated allergies may be REVERSED over time.
HIDDEN FOODS - eggs contained in mayonnaise; care must be taken that suspected foods are not INADVERTENTLY consumed while hidden in other foods.
HOW CAN I BE ALLERGIC TO THE FOODS I EAT VERY DAY?
They eat TOO much of the SAME foods too often; staples we live on: WHEAT, MILK, EGGS, CORN, SOY, YEAST, AND REFINED SUGARS.
WHAT IS THE PURPOSE OF A ROTATION DIET?
Eat a food once every 4 days instead. Rotating all foods will prevent NEW allergies from developing.
3-6 months most of those allergenic foods can be RE-INTRODUCED back into your diet.
LOW ANTIGENIC ACTIVITY - INSIGNIFICANT avoid for 3 months, then re-introduce and watch for symptoms
MODERATE ANTIGENIC ACTIVITY; PROBLEMATIC! your MD or nutritionist will help you determine whether to avoid for 3 months OR to eat on a rotation schedule.
re-introduce food EVERY 2 DAYS; if symptoms reappear, eliminate from diet for another 3 months!
HIGH ANTIGENIC ACTIVITY - SIGNIFICANT! need to be strictly AVOID FOR 6 MONTHS!
re-introduce as above food every TWO DAYS; if symptoms reappear, eliminate from diet for another THREE MONTHS.
PERSISTENT FOOD ALLERGY - SENSITIVITY & LEAKY GUT SYNDROME
leaky gut syndrome results when the LINING surface of the INTESTINAL MUCOSA begins to breakdown because of continuous irritation and/or inflammation.
Irritation/inflammation can be caused by continuous exposure to irritant particles
and may be a causative process in persistent food allergy/sensitivity.
If your allergies do NOT clear after elimination and rotation, consult your MD regarding the possibility of leaky gut syndrome.
MALT OR MALT FLAVORING - made from barley malt vinegar modified food starch or modified starch soy sauce or soy sauce solids
grains NOT allowed in any form:
wheat& durum, semolina, kamut, & spelt;
rye, barley, and triticale
BE A FOOD DETECTIVE – call first; verify ingredients by calling the manufacture and specifying the ingredient and the lot no. of the food in question.
state your needs clearly; be patient, persistent, and polite!
if unable to verify ingredients or list is unavailable; LEAVE IT OUT!
ADD ONE NEW FOOD AT A TIME listen to your body for ADVERSE REACTIONS before starting 2nd food.
WHEAT-FREE IS GLUTEN-FREE, GF! may still contain rye, barley, or other ingredients that are not GF.
The GA diet is a LIFE-LONG commitment and should NOT be started before being properly DIAGNOSED with CELIAC DISEASE.
Starting died WITHOUT complete testing is not recommended and makes diagnosis difficult.
People with answers
Celiac Disease Foundation 818-990-2354 13251 Ventura Blvd., Ste. 1 Studio City, CA 31604-1838 www.celiac.org
Gluten Intolerance Group 206-246-6652 15110 10 Ave., SW, Ste. A Seattle, WA 98166-1820 www.gluten.net
visit www.livingwithout.com to purchase wallet-sized GLUTEN-FREE dining cards plus they have a magazine you can order
QUICK START GUIDE FOR A CASEIN-FREE DIET
Gluten-free and casein-free, GF/CF, diet has provided positive results for many people diagnosed with: autistic spectrum disorder; such as autism, asperger’s syndrome, atypical autism, and pervasive developmental disorder! (I don;t feel this is correct for me at all! Betty)
When removing dairy from the diet, it is vital that adequate calcium and vit. D be ADDED in the form of fortified milk substitutes or acceptable vitamin and mineral supplements.
Guidance from a qualified MD or nutritionist is strongly advise.
avoid goat & sheep milks as well as COW dairy products
KOSHER IS GOOD PAREVE food are casein-FREE.
DAIRY FREE IS NOT ALWAYS CASEIN FREE!
PEOPLE WITH ANSWERS
THE GFCF DIET SUPPORT GROUP PO BOX 1692 PALM HARBOR, FL 34682-1692www.gfcfdiet.com
ANDI AUTISM NETWORK FOR DIETARY INTERVENTION PO BOX 335 PENNINGTON, NJ 08534-0335 URL=http://www.AutismNDI.com]www.AutismNDI.com[/URL]
SPECTRACELL LABS, HOUSTON, TEXAS ********************************* medicare paid $ 1390.00 FIA testing has determined the following FUNCTIONAL deficiencies: vitamin B12/ cobalamin serine SPECTROX TM total ANTIOXIDANT FUNCTION - average 48.8 percentile
REPLETION SUGGESTIONS: vitamin B12 - 100 mcg daily; serine - 500 mg T.I.D. = 1500 mg daily; total antioxidant - increase intake of foods rich in antioxidants; such as, FRESH FRUITS & VEGETABLES.
FUNCTION: If supplementation is desired, the following daily doses of nutrient antioxidants have been suggested as safe for long-term intake in humans by scientific research.
VITAMIN C - 1000 mg VITAMIN E - 400 IU d-alpha-tocopherol SELENIUM - 100 mcg
INTERPRETATION - AVERAGE A SPECTROX value between 25 - 75 percentiles indicates an average antioxidant function for apparently HEALTHY persons.
Since antioxidants are protective nutrients, an average status means an ability to resist an oxidative stress similar to the majority of persons. However, average status is NOT idea, nor is it clearly deficient.
VITAMIN B12 - cobalamin - patent’s lymphocytes have shown a deficient status for this.
Vit. B12 is needed to form blood and immune cells, and support a HEALTHY NERVOUS system.
DEFICIENT symptoms: both hematological (pernicious anemia) and neurological. A megaloblastic anemia may occur because of the effects of Vit. B12 deficiency on FOLATE metabolism.
shortness of breath, fatigue, weakness, irritability, sore tongue, decrease in blood cell counts (red, white, and platelets) are all clinical signs of vit. B12 deficiency.
Neurological symptoms are manifested as progressive neuropathy, with loss of position sense and ataxia.
If vit. B12 repletion is not initiated, PERMANENT neurological damage including degeneration of nerves and spinal cord can result.
Recent evidence suggests that MENTAL symptoms of depression and fatigue are detectable before anemia develops.
vit B12 is necessary to prevent accumulation of homocystine, a toxic metabolic byproduct linked to cardiovascular disease and connective tissue abnormalities.
Hypochlorhydria and gastrointestinal disturbances are frequently associated with vit B12 deficiency.
Dietary sources for cobalamins are strictly from ANIMAL foodstuff; not plant foodstuff.
SERINE is used to manufacture proteins, energy, cell membrane structure and synthesis of other cell components (DNA & RNA).
Serine is a dispensable amino acid obtained from diet & synthesized from other amino acids and metabolites of glucose.
Quantitatively, serine supplies more than one-carbon units than any other nutrient.
Serine is an attachment point for carbs on protein chains.
DEFICIENT SYMPTOMS - NO specific deficiency symptoms are known for serine. However, some individuals may have a metabolic defect in serine synthesis or conditional need for serine during periods of cell growth or psysiolocal stress.
Preliminary clinical evidence suggests neurological symptoms (neuropathy, neuritis, and behavioral disturbances ) may be associated with serine deficiencies.
Additional lab tests to determine other aspects of serine metabolism would include amino acid analysis of serum &/or urine.
REPLETION - since serine is a dispensable amino acid, NO DIETARY RDA EXISTS. Serine is present in foods that are RICH IN PROTEIN. Does of 1-2 grams daily of PURE SERINE appear safe.
TOTAL ANTIOXIDANT FUNCTION (AF)- is to protect biomolecules from oxidative damage. SPECTROX measures the net ability of antioxidant and repair mechanisms of each individual’s own cells, giving a total assessment of AF.
OXIDATIVE STRESS Each person’s cells and tissues are constantly subjected to highly reactive and unstable molecules termed FREE RADICALS, causing oxidative stress.
These hostile molecules are a normal byproduct of life and are produced by metabolism of oxygen, immune system cells, numerous enzyme reactions essential for metabolism, and environmental sources
(SMOKE, IONIZING RADIATION, AIR POLLUTION, CHEMICALS, TOXIC HEAVY METALS & OXIDIZED (RANCID) FATS)
Some of more comment free radicals are: superoxide, hydroxyl, singlet oxygen, and peroxides.
By their chemical nature, free radicals although short-lived, promote a chain reaction of radical formation, followed by a wake of chemically-altered damaged biological molecules.
Research is continuing to find that much biological damage and diseases are inducted and or mediated by injury from free radicals.
CELLULAR ANTIOXIDATES: Free radicals, and their chain reaction byproducts, can be neutralized and converted to less harmful products (quenched) by antioxidants.
Antioxidants are enzymes, essential nutrients, or a wide variety of endogenous or dietary compounds.
Antioxidants interact in a complex manner with recharging and overlapping, redundant functions.
Cells also possess extensive mechanism to repair damaged biomolecules, which appear protective in a net antioxidant function test.
Deficient intakes or levels of nutrient antioxidants are associated with higher risks of:
CANCER, CARDIOVASCULAR DISEASES, ARTHRITIS, CATARACTS, A=y MANY OTHER DEGENERATIVE DISEASES.
associated with lower incidence of chronic degenerative diseases.
8 pages & I dont understand one thing they say; saw NO results but this is where the LLMD said NO CAFFEINE showed up even though Is had to take a CAFFEINE NO DOZ pill which didn’t show up! Bettyg
*******************
5-2-06, Dr. V does/will see lyme CHILDREN. I inquired of her front desk staff; they confirmed this to me.
************************* 4-26-06, I took my 2 huge bags of stuff from MD to PCP today. He didn't look at anything but called local lab. So now I'm to meet with staff tomorrow so they can look over & read all the SPECIAL details to do it CORRECTLY. Must be done on Mon. - Wed. only!
I also contacted LLMD's office asking them to send me their new instructions as an attacment since I could NOT read the small print and TNR print.
I received it I see in my inbox, but haven't downloaded yet. I'll change the font, SIZE of print, & break up the technical paragraphs so I can comprehend this now. They were really nice about it.
Also, she said I did NOT have to go to hospital! Just go to local blood lab to have work done.
She also gave me a quote of 1 box with NO AMOUNT on it = $ 420 !! 3 others, check with medicare to see what they will pay. Bettyg
4-21-06, Well, I got home 6 pm Thursday night from my new LLMD 3 hr. appt. in Minn.
I was thoroughly pleased how thorough she was! I completed a 16 page Q/A survey, and she had many more questions going to back to our being toddlers, any trauma injuries, city/farm well water, my being around pesticides, etc.
She took 30 minutes prior to our meeting to review my summary of the last 8 yrs. Of medical reports, x-rays, blood labs, etc. She highlighted many areas she wanted to ask me more questions on follow-up to my answers.
During all this she had this to say: She requested that I NOT use the tape recorder I brought today because some other patients had done this, and then posted their notes to the internet; she was unhappy about that.
She did say on my 2nd 2 hr. visit in June I could tape record that since it will deal with the treatment plan she develops after getting all the blood labs back.
I gave either 18-20 vials of blood for things I had never heard of:
She did say I had good allergies based upon my answers.
I"ll have to start a really radical way of eating in the future: no shortening or Crisco; so that leaves out the once/wk. Gravy and bread; instead use safflower, sunflower, or olive oil
She mentioned mercury and gluten.
So now I;ll need to read Gigi;s extensive MERCURY articles she;s written. Gigi, are they all in Treepatrol;s NEWBIE LINKS TOGETHER?
use glucosamine & MSM for the swelling she found in my hands in the knuckle area. Said my ankles were swollen to which I didn;t know.
take my aspirin 81 EC TARA COATED with FOOD;
Exercise - get a PILATES TAPE to do laying down..
Hire someone to clean my house once a month! "You;re in no shape to be doing this even it doesn;t get done that often."
Get a new vacuum cleaner for allergies. buy FOUST CO. air cleaner; 800.353.6878 needed for my multiple chemical sensitivities;
NO MORE MERCURY FILLINGS; GET COMPOSITE ONLY! any replacement fillings, use composite only. find a BIOLOGICAL DENTIST to do an electric _______ screening; use web site to find the nearest one.
look for MOLD in your home; all your symptoms indicate this.
BLACK MOLD is worse causing: me to gain weight, sensitivities of the eyes, hearing, chemical sensitivities, and TREMORS, which my hubby has 24/7! We;ll do neuron toxin survey.
She "opted out of medicare" which she took 10-15 minutes for me to understand this. They;d take 20% off for medicare, but her OFFICE VISITS can NOT be submitted to my Iowa Wellmark BC/BS office for reimbursement! That;s what "opted out of medicare" means; she doesn;t send them insurance claims.
I was disappointed to learn this since hubby/I pay $600+ monthly on our insurance. Told her I was still going to submit her detailed bill to them.
HER TESTINGS ARE COVERED BY MEDICARE; the majority of them, but at least 4-5 were not totaling a little over $1,000!
EDITED TO ADD CONTENTS OF 4 BOXES:
She sent 4 boxes home with me; these are the ones she does NOT feel my insurance co. will pay for. I;m to check into our local hospital and staff there perform testings and send them off for:
Hemex labs, Phoenix, 27 = $ 420 !!
isac panel: Fib, F 1_2, PA by flow, TAT, ; __ I deleted info accidentally!
mocca panel: fib, F 1&2, SFM
Great Smokies Lab - CDSA 2.0 COMPREHENSIVE DIGESTIVE SCHOOL ANALYSIS = $352; and you do certain things 3 days before down to 1 day;
EDITED 5-23-06: the CDESA 2.0 STOOL ANALYSIS also the LLMD can add the "add-on" part which mine did but didn't show the additional cost of $242 to have done.....total of 2 parts - $594.
Great Smokies Lab - CDSA comprehensive detoxification profile – frozen 8 hrs. prior to shipping sample! = $30;
On our way home, I was looking at all the copies of the 18-20 blood tests she had done, I totaled them up...covered/non-covered were $2400 plus $630 for office visit & charge for removing the blood sending them to many different labs = $3,030! I was amazed on that.
EDITED 5-24-06: The office visit and tests were between $ 7000 to $ 7500! .
Thank goodness some of you who are her patients forewarned me about the expensive testings.
She was shocked my beginner LLMD had never put me on IVs from the start.
Also, he never recommended probiotics; start immediately.
Instead of starting a new summary of my last 8 yrs. Of medical appts., I used the detailed tables, etc. I submitted to the admin law judge for my 2nd SS disability insurance benefits.
She was impressed by my PCP dr. for his thoroughness of many testings.
She felt may be after my next appt. & changing my new food diet, that my PCP could take over what she was doing here, and I would NOT have to return there!
she gave me a brochure on Dr. K, Wisc. MCS expert; I should schedule an appt. takes 3 months to get in there.
She gave me the option of 4-6 wks. So I chose 6 wks. Due to high gas prices we;re going thru!
I kept track of my expenses: 2 motel rooms since a friend came/helped me drive, our meals, and gas gave to $235. It was 500 miles round trip.
We hit every rest area, and we were in 2 new Iowa ones! Times, it was so hard to get out. I took my small cooler of 9 frozen ice packs to have on my neck and left groin area where degenerative arthritis is so bad.
I have a hump in my upper back; no one ever said anything about it, but she was concerned and mentioned various reasons of why it was there. I do have osteopenia and perhaps this is osteoporosis now plus other things.
She noticed things in the top of my palm and finger nails plus a strange eraser head size blood clot there for quite a few years and no drs. Paid any attention before.
She gave me a THOROUGH exam including checking inside the vagina with a flashlight.
She felt my big stomach and said it didn’t feel right to her: both my small & large intestines were involved in this!
She noticed some red marks on tummy/chest area & commented on them.
She gave the soft tissue tests, the "sharp" instrument going from the elbow to the ends of my fingers and on my entire foot.
She found a lot of neuropathy and numbness in my toes!
She had me walk in general, on my tiptoes, on my heels, etc.
I wore my dark rx sunglasses with my NOIR wrap around sunglasses over them and my floppy hat over everything. I needed that most when she examined me on the table. Got severe back spasms when she was taking all that blood.
Used my cane walking since the degenerative arthritis. Is so bad in my left groin area.
She sent 4 boxes home with me. 2 more arrived by mail.
My friend was able to move my car right outside her front door which was great for hauling all that plus my huge bag of files, etc.
Be sure you have copies of everything you plan on giving her; she charges $20 for making them there.
If you need a letter from her to submit to your health insurance co., she charges $50 for 1 page letter!
When I was signing all the blood lab/charge card requests, I kept falling asleep dropping my paper, the clipboard, or the pen. I couldn;t even read my writing.
When I was waiting in her exam office alone, I laid my head back and I was asleep for a few minutes. When I awoke, she was standing over me; this concludes everything as you can;t take any more.
(couldn't sleep at motel last night but Quality Inn w/Perkins next to it was very nice & reasonable; I'd recommend it!)
My appt. from time I saw her to going to front desk to charge my visit was 3 hrs. 15 minutes.
I did take her my brain MRI CD which the receptionist was going to burn one for her, but it got misplaced with ALL the blood paperwork. She had seen many MRIs of lyme. I had hoped she could go over the area of "mini stroke", but perhaps next time.
These are the blood tests I underwent (takes 2-4 wks. For results, but she will send a summary in 2 wks.):
CDSA 2.0, purge or random includes: microscopic exam for worms; helicobacter pylori steel antigen EIA; clostrodoi, difficile EIA; chymotrypsin; and fecal fats from Great Smokies Diagnostic Labs NC.
456, multiplex PCR - whole blood; repeat of 188, western bot IGM ; " 189, western blot IGG – medicare will pay for IGENEX!
Great Smokies lab again: mercury, lead, cadmium, antimony, silver, thallium, tin, copper, magnesium, manganese, molybdeum, potassium, selenium, and zinc!
Same lab: caffeine clearance, plasma cysteine, & plasma sulfate.
same lab: DETOX PROFILE, COMPREHENSIVE
same lab: DETOXI GENOMIC PROFILE, identifies genetic risk for detoxification defects that may continue to chemical sensitivities, abnormal toxin metabolism, and oxidative stress.
ENTEROLAB, Dallas, Texas for optimum intestinal & overall health includes:
anticasein IGA, quantitative fecal fat, PCR amplification, DNA isolation, DNA separation, probe id, molecular id & interpretation, antigliadin IGA, and antitissue transglutaminase IGA,
She gave me a multi food ELIMINATION DIET 5 pages I haven’t had time to read yet.
Also gave Eterolabs, CELIAC SPRUE TEST RESULTS sheets...haven;t read yet.
Well, this concludes my book length version. For other newbies who haven;t been thru all these blood tests like me, thought I;d give them some insight of what all blood tests are for.
My other detailed comments on my initial feedback after seeing her can be read at:
Now it makes sense to me on the many subjects you have talked about related to these blood tests, that I scrolled by since I didn;t know the subject area. Betty Gordon, Iowa
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
She's deffinatley thourogh.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Oh my God Betty!!!! I'm so glad you've found someone who really will be able to get you on the path to health. You certainly deserve it....
I only wish I lived closer to this LLMD.
Posts: 175 | From ma. | Registered: Aug 2005
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey there Betty...holy crap....
I had a comprehensive blood annalysis done when I worked for labcorp cuz it cost me nothing...
Are you rich or something?
If you've never had IV abx I don't wonder you're as sick as you are. You need to get your bug level down. You'll feel better when you accomplish this.
Go ahead and rule out a lot of other stuff but hey...you have lyme disease...that's primarily why you feel crappy...once you get some IV or IM medication in you you'll see some improvement.
You sound like me when I was in my earlier stages.
Good luck............zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Good golly Miss Betty!
That lady gave you the works.
No stone unturned!
Well, she will certainly know what she's dealing with.
Sounds like it was well worth the drive. At least you (and her) won't be wanting you to 'dash back in' for one more test - at 500 miles per round trip -- you got 'em all in round one. Now, good luck on results and keep us posted!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
I'm glad you are on the right track! She is totally right about a total diet change, no gluten or shortening! Probably no dairy either.
The mold and mercury issues are huge. Another one that is easily overlooked is fluorinated water.
My mold issues were at church. Exposure once a week was enough to do it. Also a NEW wool rug I bought about the time as the mold problems. I stopped going to church, until they could find and correct the source and got rid of the rug and had major improvement. This was all before I realized I had lyme. I ventilate my basement all year long.
Any oil needs to be decanted into small glass bottles with no air so it doesn't go rancid, because rancid oil is not good for us either.
Well, Betty, this is the first day of your better healing! I'm so happy for you.
I wouldn't worry to much about not having IV first, I did, but co-infections hampered improvement. Sometimes we just don't know.
riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Betty, sounds excellent. I'm glad she is paying attention to mold and MCS issues as well as Lyme. I think you will find it makes a big difference to take care of these.
It is a lot of changes for you to make. Even though it is important for your health, take it slow and easy. That way it is easier to stick with it. especially diet changes.
posted
Betty I live in Iowa can you privately email me who this is. I need someone who gets IT! my llmd took one test and gave me abx that is it.
Posts: 24 | From Iowa | Registered: Apr 2006
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bettyg
Unregistered
posted
Yes, I was blessed to come across her by a wonderful member, NP40, who emailed his lyme list friends; 4 of them go to her! Each one gave me a wonderful reference; can't imagaine why? LOL
FINALLY, I'm on my way to OZ! follow the yellow brick road.
Looked thru my 4 boxes today; these are the ones she said medicare/insurance wouldn't pay these charges...= $1,000 plus lb corp ws to send me another thing also.
LYME DISEASE, CO-INFECTIONS, & ALLERGIES are expensive; aren't they.
Tony Z, NO, I'm not rich, but I'm glad hubby/I saved for a RAINY DAY; it's LYME DAY REMISSION in sight for me I hope.
Yes, I thought you'd all be thrillled about reading about a GOOD LLMD who is taking the WHOLE BODY into consideration.
posted
Dang Betty...That was some visit...Well, she's thorough for sure!!!! I'm impressed..She sounds like your ticket to better health!!!
And also impressed with you, that you could decifer all those tests and repeat to us what they all were!
I would never have been able to get passed the fact that 'they took blood...and we find out in a few weeks why and what the results are'...
But I guess that's what got me in the perdicament I'm in...being unexplainably symtomatic for a looong time and trusting the doctor to take it from there .
Hope all goes well for you from here...and you get the break you deserve!!!
Here's to better health for you, Betty!
-------------------- "Life is mostly froth and bubble; Two things stand like stone; Kindness in another's trouble; And courage in your own." TTFN -laserred- Posts: 493 | From MidWest NorthWoods | Registered: Jan 2005
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bettyg
Unregistered
posted
Laserred, shush, don't tell anyone but I asked for a copy of EACH blood lab I was required to sign either 2 or 3 per lab sheet!
Yes, I, too hope this is the break I need to get better and have QUALITY life for me and with hubby.
Thank you all for the meaningful notes; means a lot to me.
Bettyg
I couldn't have told any of you HAD I NOT used my normal strategy....I want a copy of everything you do or say!
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Wow. What this doc is doing may be expensive, but very important, I think. I'm finally getting it through my thick skull that it isn't ALL about JUST the Lyme bugs......
Was there a black mold test in there somewhere? Is there a test to determine if you have black mold in your system?
I only know of mold allergy tests, and then antibody tests which can only tell you if you have been exposed, not if you have it in your system. Maybe I am wrong?
Can't wait until some of your results start coming in.....
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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posted
Wow, that was quite a visit. Hoping you see progress soon.
A year ago my yeast problem got out of control from the abx. It may have already been a problem lurking in the background. I went on a very strict anti yeast diet, ate ony organic, gave up the microwave & high mercury fish and miraculously my headaches, allergies, MCS,... all disappeared. I had to stay super strict for a year. Now at the 12 month mark I can ease up very slightly.
I suspect the Lyme caused these problems but a normal diet exacerbated them. I will never return to my Pre-Lyme lifestyle and that's probaby a good thing! I hope the dietary changes work as well for you as they did for me. hatsnscarfs
Posts: 956 | From MA | Registered: Nov 2004
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Betty,
This is great news!
I agree with MLKEEN. The mercury issue is huge. I have read that mercury toxicity prevents abx from being effective and many people after amalgam removal and detoxification, get much better results from their abx.
Mold and diet too.
I developed Leaky Gut Sydrome and had to drastically alter my diet. That was 3 months ago.
My arthritic pain level decreased dramatically and I lost 20 lbs without any exercise. Bad diet has a big impact on your health.
Before you can effectively deal with the Lyme, you have to remove these barriers from your body.
I firmly believe these barriers are part of the reason why some people respond well to treatment and others do not.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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bettyg
Unregistered
posted
quote:Originally posted by bettyg: [QB]
quote:Originally posted by Truthfinder:
Was there a black mold test in there somewhere? Is there a test to determine if you have black mold in your system?
I only know of mold allergy tests, and then antibody tests which can only tell you if you have been exposed, not if you have it in your system. Maybe I am wrong? Tracy
Tracy, to my knowledge there was NO black mold test in there; at least it didn't show up on my copies of each blood lab, and as if I could decifer any of their medical terms for blood tests! LOL
I've got a LOT of reading from several handouts she gave me that I have not had time to read. Too exhausted from trip that I couldn't concentrate without falling asleep like I do even here reading/posting.
Trout, I'll get back to you about the IV vitamin C question you asked me ... got to read all the info she gave me & let it SINK IN!
Thank all of you for your input in changing your diets due to allergies, mold, mercury, etc. comments. So much more to learn & reading galore.
Bettyg -- yes as I get my test results; MDs summary; you bet; I'll keep you informed.
My results will give you ideas to pursue with your LLMD or PCP who is trying to help you.
Yes, that was the best 500 miles I'd ever ridden/driven for a THOROUGH MD's exam! My PCP's complete physical is only 10 minutes!
posted
Wow sounds like you had a good work up. It will be interesting to see the results.
I wish I could find a doctor to order tests that takes insurance. I have been so sick for so long that it would be nice to know what I'm all dealing with.
Good Luck!!
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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bettyg
Unregistered
posted
Kathy, yes, it was thorough and fatiguing!
I took my 2 huge bags of stuff from MD to PCP today. He didn't look at anything but called local lab. So now I'm to meet with staff tomorrow so they can look over & read all the SPECIAL details to do it CORRECTLY. Must be done on Mon. - Wed. only!
I also contacted LLMD's office asking them to send me their new instructions as an attacment since I could NOT read the small print and TNR print.
I received it I see in my inbox, but haven't downloaded yet. I'll change the font, SIZE of print, & break up the technical paragraphs so I can comprehend this now. They were really nice about it.
Also, she said I did NOT have to go to hospital! Just go to local blood lab to have work done.
She also gave me a quote of 1 box with NO AMOUNT on it = $ 420 !! 3 others, check with medicare to see what they will pay. Bettyg
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
i am so impressed by your organization and attention to detail.
wow.
you are something else!!!
good luck
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
Hopeful, I used to be a full-time secretary so organization & detail were required. I used to be really good; I struggle to do like I have done above ... I used to take this for granted.
I have piles all over at home; so I'm not kidding anyone. But THANK YOU for the compliments; my head still swells!
Tutu, yes, my health was suffering for NOT getting to an experienced LLMD vs. a "beginner" llmd since I didn't want to travel. It's NOT pleasant at all for me, but I'll do what I must do to have some quality of life left.
I'll be startng this new diet soon after I get rid of all these 6 huge boxes from my Minn. visit next Tues. I can only do so much at a time; got to prioritise, and the rest can wait.
I'll check the links you gave me another day...but thanks for including them ok!
posted
I just entered 5-21-06 my NEURO SCIENCE & ENTEROLAB results I received today. A few more still coming...uffda!
I don't understand most of the newer stuff. If anyone has knowledge on these reports & detox, etc., please let me know on aboard or by PM. Thanks. I want to know a little more than just reading this prior to going to my June follow-up LLMD appt.
this MAY be all; got to go thru many files tomorrow to see if it's all.
Got also a bill from GENOVA for $242.00 saying I hadn't paid the correct PREPAYMENT amount so they are billing me. Genova's was $695. regular & prepaid was $101 difference! Quite a shock.
Genova also send 2 letters saying they had submitted the bills for 2 to medicare, my primary carrier; if they don't pay, I'll send to Iowa's BC/BS office. Bettyg
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bettyg
Unregistered
posted
Hi all! I wish that someone would have let me know that my lab posts, etc. were NOT copied the same as they were in my word processor.
I spent 2 hrs. not removing all the gibberish someone else told me about in another post.
I also had double spaced the entire things; it changed that to single spacing only too.
Every apostrophe created the line of numbers and put in a semicolon; I left the semicolon....too much time editing already.
I do hope you'll take the time to skim explanations but study the results of more diagnosis. Bettyg
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Thank you Betty, I do appreciate you hard work in trying to make this an easier format for others.
As for me... it looks essentially the same.
If there's something you specifically wanted me to look at in it could you point me to the general area?
I cannot track this length and type of post. All the even blocks, all look the same to me. I can not keep my place or understand what I'm reading.
I truly do appreciate your effort and see you must have done an awful lot of work to write all that out.
Thanks again
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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bettyg
Unregistered
posted
TB, After reading your comment earlier today, I copied/pasted why I wanted you to see to your sleep post.
posted
up for the 3 people wanting info on MDL, IGENEX, etc. and the $$ costs involved. Betty
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bettyg
Unregistered
posted
Somehow my 1st post on my 1st set of lab results & my LLMD's summary disappeared on here. So I added it at the VERY TOP of my post so no one would have to look thru my lengthy posts about all the testings done on me. Bettyg
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bettyg
Unregistered
posted
up for couple of women with GUT problems so they can read about GLUTEN & CASEIN FREE FOODS ....
I typed all the info given to me so others on here would be helped by reading my notes...
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bettyg
Unregistered
posted
up for couple women with GUT problems...
Below you will find info on GLUTEN-FREE & CASEIN-FREE/no cow's milk, etc. foods. Hope it will help you.
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
I hope this is the one,that i am looking for...bumping this info' up. I want TxCoord to read this.
We are looking at blood work ups etc. trying to figure things out so I am bumping htis up for a bit.
Thanks <<<<< Bettyg >>>>> from Silverwolf!
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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bettyg
Unregistered
posted
Silverwolf, thanks for finding my detailed complete bad lab testings & my LLMD summary of everything I had done. I need to add to this, and you saved me the trouble of finding it!
Also, added the link to MY newbie links I send to newcomers; so you helped me twice tonight! THANK YOU!
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MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
8man12
That was an uncalled for remark made to Betty.
Acorn
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Bettyg,
Did they leave you any blood left after running all of those tests?
It is amazing how thorough some doctors are. I am so glad you found one.
Will send prayers and positive thoughts towards your healing.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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bettyg
Unregistered
posted
geneal, yep, they left me enough blood to get home on!
acorn; thank you for your support and very kind words; i agree brian's comments were uncalled for.
this is what i did for a living for 30 yrs. 7 months at a DESK job! i've lost a large part of my organizational/typing skills; you all see what i still have left!
brian, it goes to show again that not only are we judged by the public but by our fellow lymies:
"you look so good" or in my case, "you do so much typing on here, you could do a desk job; what's your disability for?"
ALJ determined my disabilities were: severe depression and affective disorder and NO REVIEW FOR 7 YEARS TAKING ME TO NORMAL RETIREMENT AGE! .
ALJ did not take in my 34 years of fibromyalgia pain, chronic fatigue, and my 34 yrs. of MISDIAGNOSED CHRONIC LYME DISEASE.
MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
You're welcome Betty. I also see he removed the sarcastic remark.
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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bettyg
Unregistered
posted
acorn; thanks for the update; i've not been back here; so i didn't know brian's comments were gone.
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bettyg
Unregistered
posted
FINAL UPDATE on my minn. tests, appts., on BILLS PAID OUT OF POCKET!
8-20-07, bcbs/wellmark sent me their FINAL letter, they will NOT REIMBURSE ME FOR $3,952:
* 3 llmd appts;
* $1,000 of prescribed supplements except they paid for COMPOUNDED RX MEDS;
* rest being for total body lab testings considered "experimental"
bottom line; they might have paid on these IF MEDICARE SUBMITTED THEIR BILLING SAYING THEY WERE DENYING PAYMENT,
however, llmd, OPTED OUT OF MEDICARE so the docs do NOT submit any bills to medicare.
therefore, you have NO DENIAL BY MEDICARE TO SUBMIT, and wellmark will not paid without medicare's paperwork!
i was told 4-06 that my opted out of medicare signed form was good enough to submit; now 18 months later ... NO, IT DOESN'T REPLACE MEDICARE'S NORMAL FORM!
why couldn't they have told me that 4-06? unacceptable.
i also had iowa insurance commission, attorney for market regulation bureau involved since 11-06.
bcbs had to respond to every one of his detailed letters. bcbs furnished him more than they did me.
my last result is taking bcbs to civil court; big $$$! i'm tired of hasseling with them.
so before you go to your LLMD visits, be sure you understand 100% IF YOU ARE RESPONSIBLE FOR ALL CHARGES OR IF YOUR INSURANCE CO. WILL PAY SOME TOO !
remember to DOCUMENT with date, time, who you spoke to, and what specifically was said; I TYPE MINE since i can't read my writing anymore! SAVE IT IN 2 PLACES; print a copy off as you add more pages.
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I'm so sorry, Betty. What a nightmare battle. Only one as organized as you would have fought so brilliantly!! Though I am sure it has taken a toll.
They SAY they would have reimbursed "if" blah blah blah, but I'll bet they'd have figgered out some other reason to deny it even if that condition had been met.
You ought to take them to Small Claims Court. In California, no attorneys are allowed and you can bring claims under $5,000, I think... Of course, you have to weigh this with the chance of success and the mental stress of continuing.
I wish you luck and commend you on giving them a real battle!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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bettyg
Unregistered
posted
michelle, thank you for the encouragement and understanding; i'm dead tired of fighting this battle! i'm not going to pursue small claims court.
yes, i did give it everything i had rereading our policy booklet and quoting them back on where they DID NOT live up to their guidelines.
of course, they have a DIFFERENT MORE DETAILED booklet than what they send us!
but big thanks anyway. since this just happened last week, and i came across my post in my newbie's link; felt it was right to have an ending to my story. just wished it would have been SUCCESSFUL!
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quote: " 8-20-07, bcbs/wellmark sent me their FINAL letter, they will NOT REIMBURSE ME FOR $3,952:
* 3 llmd appts;
* $1,000 of prescribed supplements except they paid for COMPOUNDED RX MEDS;
* rest being for total body lab testings considered "experimental"
I guess I am not surprised they did not pay the $1000 for supplements. I have never heard of BCBS paying for them. You can still deduct them as a medical expense if your physician ordered that you take them and you have documentation of such.
Also, I am curious what they considered 'experimental' labs.
One last question: Was this LLMD really an MD or was he or she a Naturopath. I think this makes a big difference in their reimbursement. My policy specifies will not pay for that type of provider.
Posts: 339 | From nowhere | Registered: May 2007
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bettyg
Unregistered
posted
Originally posted by pineapple:
quote: ]I guess I am not surprised they did not pay the $1000 for supplements. I have never heard of BCBS paying for them. You can still deduct them as a medical expense if your physician ordered that you take them and you have documentation of such.
Also, I am curious what they considered 'experimental' labs.
One last question: Was this LLMD really an MD or was he or she a Naturopath. I think this makes a big difference in their reimbursement. My policy specifies will not pay for that type of provider.
LLMD is a MD; medical clinic providing both Allopathic and Holistic Health Care.
experimental labs; you'd have to check at top for which labs and for what they tested they didn't pay. i can't quote off the top of my lyme brain!
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Sorry for your troubles Betty. I am seeing an LLMD that has opted out of Medicare so I understand the hardship.
A Medicare supplemental policy won't pay because they are supplemental to medicare. They only pay based on the approved amount that Medicare pays. If Medicare does not pay, they do not pay.
When I decided to see a physician who had opted out of Medicare, I called BCBS (my Medicare supplemental policy carrier) to see what could be done. They said nothing could be done because they only pay based on Medicare's approved amount. This includes lab tests.
Supplemental medicare policies are goverened by law. My understanding is that they are all the same regardless of carrier. I don't know this for absolutely sure but I think that this is standard coverage for this type of policy. I doubt that a company has any leeway in how the policy is interpreted.
Unfortunately, you probably ended up talking to someone at the company who did not know what they were talking about when you initially asked them about paying the claim.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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bettyg
Unregistered
posted
terry, thx for your excellent comments. glad you checked this out yourself so you knew what you were getting into!
i probably talked to 12-15 different folks at bcbs. woman who quoted me this was supervisor over those answering the question phone lines.
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