guitarman01

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  1. Meaning how do you gage illness or getting better when there is no medical signs of illness? Also taking the mental aspect out of it. ive had a few abnormal labs that im looking into, but other then that most people find nothing.
  2. Like this right here. This is what im talking about. Fixing one problem. Only people that have dealt with this ear fullness,clogged ears, know this. Im not so sure this is Tinnitus. Im thinking almost a structural weakness that is causing the passageway to become sort of collapsed and then blocked with thick mucus. Same thats going on with the muscle weakness in the throat of colinboko. I got it too. Its a generalised muscle weakness. Same type of mechanism that could be regulating cerebral blood flow. Ive posted the study. This muscle weakness could actually be coming from the bones , or musculoskeletal. The bones are very much living tissue and can signal crosstalk and muscle contractions. muscle contractions stimulate growth.
  3. 20. I think I was 14 or 15. Way too young to be taking accutane. I would have grown out of it. I even remember my derm saying something like "your still growing" when considering accutane, sort of thinking out loud. I never asked for it though. He was the one that brought accutane up, For persistent acne. Heres part 2. It looks like they are mainly focusing on sexual problems. Solve one though, maybe solve the rest. https://rxisk.org/rxisk-prize-how-you-can-help/
  4. If something is possibly affecting the cardiac, nervous and skeletal systems, this should have been figured out right when it started happening. Not years later. At this point (for some of us) some effects could be mitigated or stopped, I'm not sure about complete reversal. Thats why im still pressing myself, to be able to make a real link to the drug. Its going to become harder though the more time that passes.
  5. All of those supplements that person mentioned above have been pretty extensively looked at and tested. Im not that familiar with progesterone though, never taken it. Other then that, I don't believe they play a significant factor in my opinion. Some could be antagonistic looking at vitamin k dependant proteins or processes. For example just like matrix gla protein binds phospholipids and calcium ions, it also might bind zinc ions. Meaning regulate. I could tell you your problems are mental and after 20 years its not the accutane. I could tell you that you, need psychiatric help. Thats why we look at obscure tests.
  6. I think you were closer looking at k2. At least a thiamine whole blood test is a easy enough test, to rule this out. I would get this test myself, but I dont have real strong belief in it atm.
  7. Whole blood thiamine testing is superior to currently available alternative tests for assessing thiamine status. Serum or plasma thiamine testing suffers from poor sensitivity and specificity, and <10% of blood thiamine is contained in plasma. Transketolase determination, once considered the most reliable means of assessing thiamine status, is now considered an inadequate method. The transketolase method is an indirect assessment. Since transketolase activity requires thiamin, decreased transketolase activity is presumed to be due to the decrease of thiamin. However, the test is somewhat nonspecific, as other factors may decrease transketolase activity. Transketolase is less sensitive than liquid chromatography-tandem mass spectrometry (LC-MS/MS), has poor precision, and specimen stability concerns. https://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/42356 Ive had a thiamine test. dont believe it was whole blood though. I think people would have figured this out from taking b vitamins. Still something else to check off I suppose. This is pretty prevalent in a normal diet though. Component Your Value Standard Range Vitamin B1, Plasma 8 nmol/L 8 - 30 nmol/L
  8. This result was normal for me. So does not appear to be universally in common. Any follow up on this yet? Can you explain this again real quick? What was elevated? the ceruloplasmin? the serum copper? or were you calculating the two to look at free unbound copper? If ceruloplasmin is a little low this could be from chronic inflammation. Limitations decreased ceruloplasmin level may also be found in inflammatory conditions
  9. I remember you posting this. How did it go with the neurologist? Were you able to get that achr neuronal antibody test? When we get in front of some of these doctors, I feel we are literally going to have to show them what we are talking about. print out the studies, the relations, show them the story in order, what might have happened. Dont expect for them to take your word. I mean this for anyone that gets resistance.
  10. The study didnt say. It was only the abstract though, if there is a full study out there it might go into more detail. I imagine they look at possible underlying causes first. For example, with this appointment I got coming up, they also wanted to schedule a echocardiogram and ekg. I've had a echocardiogram. it was normal. ive had a heart stress test where its basically a ekg while your running. it said on the report, abnormal response to stress. (Not serious enough for any concerns atm though) One of the docs said there was a little sag in my heart, but its fine. Which brings me to this. Have you checked your heart rate while your sitting and relaxed and then you get up and start moving around? if you dont have a heart rate monitor, the cheapest would prob be a fingertip monitor on amazon. I ask because of this, Postural orthostatic tachycardia syndrome (POTS) is a condition in which a change from lying to standing causes an abnormally large increase in heart rate.[1]This occurs with symptoms that may include lightheadedness, trouble thinking, blurry vision, or weakness.[1] Other commonly associated conditions include irritable bowel disease, insomnia, chronic headaches, Ehlers Danlos syndrome, fibromyalgia.[1 These orthostatic symptoms include palpitations, light-headedness, chest discomfort, shortness of breath,[2] nausea, weakness or "heaviness" in the lower legs, blurred vision and cognitive difficulties.[1] Symptoms may be exacerbated with prolonged sitting, prolonged standing, alcohol, heat, exercise, or eating a large meal. There is significant overlap between POTS and chronic fatigue syndrome, with evidence of POTS in 25–50% of CFS cases.[6] Fatigue and reduced exercise tolerance are prominent symptoms of both conditions, and dysautonomia may underlie both conditions. About 90% get better with treatment. I'll find out about this for myself soon enough.
  11. So I have another couple hour long consultation at a university, followed by a tilt table test for POTS next thursday. Im thinking this, New Warnings With Accutane Use http://abcnews.go.com/Health/story?id=117666 Megan McKinley, 19, had been an honors student until she took Accutane, the popular acne drug. Once on Accutane, she began experiencing fatigue and memory loss, and her mother, a psychotherapist, asked the doctor if her symptoms might be connected to the drug. The doctor said the drug and her feelings were unrelated. Megan improved after she stopped taking Accutane, but when placed back on it for another course of treatment, she had a “big meltdown,” and never quite recovered. Today, the young woman often spends days crying, cannot concentrate and cannot attend classes at school. She is finishing her education at home. could be this Postural orthostatic tachycardia syndrome All patients were apparently well, until years later when they presented with fatigue, cognitive dysfunction and orthostatic intolerance. These patients were diagnosed with POTS on the basis of clinical features and results of the tilt table (HUTT) testing. Five patients (all women), aged 22-44 years, were identified for inclusion in this study. These patients developed symptoms of fatigue, cognitive dysfunction, orthostatic palpitations and either near syncope or frank syncope. The debilitating nature of these symptoms had resulted in lost of the employment or inability to attend school. Three patients were also suffering from migraine, two from anxiety and depression and one from hypertension. All patients demonstrated a good response to the employed treatment. Four of the five were able to engage in their activities of daily living and either resumed employment or returned to school. if im right, This could maybe set some things off. They should be familiar with some of my abnormal blood tests that circle around this^ and this, Cerebral vascular control is associated with skeletal muscle pH in chronic fatigue syndrome patients both at rest and during dynamic stimulation Keywords: Autonomic function, Chronic fatigue syndrome, 31P MR spectroscopy, Cerebral blood flow, Arterial spin labelling (ASL), Dual echo fMRI https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3777833/ and this is only part of it. Its about proving whats real. whats objective not subjective. You dont tell them, you show them.
  12. Mechanism. This in vitro diagnostic test is based on the ability of the venom of the Russell's viper to induce thrombosis. The venom contains some substances (RVV-V and RVV-X) which directly activate factor V and factor X, which turns prothrombin into thrombin in the presence of phospholipid and calcium. This might be more a blood disorder then lupus. Increased blood clotting risk. so now i have to worry about the safety of vitamin k. but then I see this as well. warfarin is a vitamin k antagonist. maybe il have more tests to look into specific clotting factors. I have another appointment in a couple weeks for tilt table testing. Hopefully I get in front of the right doctor. I feel like im at least building a case here. Warfarin use often causes false-positive results in the dilute Russell viper venom time test (DRVVT) https://link.springer.com/article/10.1007/s12185-017-2228-y Interactions of vitamin K-dependent proteins with calcium ions and phospholipid membranes. Objective—Vitamin K–dependent proteins (VKDPs), which require post-translational modification to achieve biological activity, seem to contribute to thrombus formation, vascular calcification, and vessel stiffness. higher risk of incident ischemic cardiovascular disease. The association was consistent across strata of participants with diabetes mellitus, hypertension, renal impairment, and low vitamin K nutritional intake. What im saying here^ is this could be a false positive from certain factor deficiencies caused by vitamin k antagonist/deficiency. Vitamin K-dependent factors: II, VII, IX, X, C, S, Factor x deficiency, vitamin k deficiency. false positive drvvt? Im not sure though.
  13. an update on some tests I got. Il look into this more when I get a chance. The positive antiphospholipid antibody phosphatidylserine might correlate with this as well. Lupus Anticoagulant Work-Up Dilute Russell Viper Venom Confirmation Positive Lupus Interperpretation Possible Negative Interpretation for Lupus Anticoagulant workup may be based on test results for ultracentrifuged APTT, Silica Clotting Time, DRVVT (Dilute Russell's Viper Venom Time), Thrombin time, APTT inhibitor screen and/or Factor VIII Assay plot pattern. Testing is invalid when patient is on Rivaroxaban, Apixaban, Fondiparinux, or low molecular weight heparin. Clinical Correlation is Advised.
  14. heres another one. They already had some idea of this in 1989. Retinoid-induced hemorrhaging and bone toxicity in rats fed diets deficient in vitamin K. For all retinoid-dosed groups maintained on the purified diet, changes in prothrombin times occured as early as 1 week. purified diet devoid of vitamin K. heres another one. Retinoic acid induces matrix Gla protein gene expression in human cells. The present results suggest that part of the known actions of retinoic acid on skin, bone, cartilage, and other tissues in the human may be mediated by the stimulation of MGP synthesis Matrix gla protein (MGP) is member of a family of vitamin-K2 dependent, Gla-containing proteins
  15. This is one of the reasons i'm still looking at vitamin k2. Forget the website and this guy's opinions for the moment, im looking at the source material. The study. https://chrismasterjohnphd.com/2009/04/07/tufts-university-confirms-that-vitamin/ Vitamin A Curbs the production of vitamin k dependant proteins. The authors made another interesting observation that I had not hypothesized: vitamins A and D appear to increase the turnover of vitamin K and the conversion of vitamin K1 to vitamin K2. In the D group, liver stores of K1 were reduced and kidney levels of MK-4, the form of vitamin K2 that animals synthesize, were increased. All A groups, whether the A was given alone or in combination with D, had reductions in both K1 and MK-4 levels. The authors referred to this as “antagonism” between vitamins A and K, but since vitamin A improved vitamin K-dependent activation of MGP, could it not be that the reduction in K1 was due to conversion of K1 to MK-4 and that the reduction in MK-4 was due to increased utilization and turnover of MK-4? The authors never suggested that vitamin D “antagonizes” vitamin K1, for example, even though its levels were reduced. This is the actual full study. 9-Cis retinoic acid reduces 1alpha,25-dihydroxycholecalciferol-induced renal calcification by altering vitamin K-dependent gamma-carboxylation of matrix gamma-carboxyglutamic acid protein in A/J male mice. https://www.researchgate.net/publication/242387859_9Cis_Retinoic_Acid_Reduces_1a25-Dihydroxycholecalciferol-Induced_Renal_Calcification_by_Altering_Vitamin_K-Dependent_g-Carboxylation_of_Matrix_g-Carboxyglutamic_Acid_Protein_in_AJ_Male_Mice12 The mechanisms by which 9-cis RA and 1,25(OH)(2)D3 alter vitamin K concentrations warrant further investigation. Remember 1,25(OH)(2)D3 blood levels being high in some persons with CFS.
  16. if you dont figure anything out, you could always try a colonoscopy prep minus the colonoscopy. That is if youve never tried this. This will completely clean out the pipes, so you can kind of reset and see where your at. if you still notice bloating(if you already had this) then you know you got some inflammation going on. Its very safe cheap and all otc. just make sure you dont make any plans for a while of course. http://www.mchllp.com/mch/ProcedurePreps/Colonoscopy_Prep.pdf Gatorade / Miralax Prep for Colonoscopy theres also a version of this where it was just 64 oz of gatorade, 14 serv full bottle of miralax and two overnight dulcolax tablets at the start, you drink 8 oz of the picture every 10 mins. I tried it once.
  17. im sure there are many types/causes of chronic inflammation. my ana, sed rate, and crp have always been negative. we'll see about this protein electrophoresis test. I should have the results in a few days. when you get a chance maybe you can find out what was abnormal. when I did a search at walkin lab for this test, I just happen to click on home test kits, and this is what came up. not sure what kind of associations they are using. This might mean nothing, but still worth noting. SEARCH RESULTS FOR 'SERUM PROTEIN ELECTROPHORESIS' Vitamin K Assay Serum Blood Test - Genova Test Kit Vitamin K is a fat-soluble vitamin that functions as a cofactor in the production of blood coagulation factors (in the liver),.. Add to Compare Cardio Metabolic Blood Spot Profile - ZRT Test Kit Assesses risks associated with type 2 diabetes and cardiovascular disease. Tests in this profile include: Insulin, High Sensitivity... IgE Inhalants Blood Test- Genova Test Kit Chemiluminescent test to evaluate serum IgE antibody levels to 14 region-specific common pollens and environmental inhalants. This... Food Antibodies 90 Blood Profile, Allergix IgG4 - Genova Test Kit Measures the IgG4 levels in serum that react to 90 different foods, including commonly eaten foods such as corn, milk, egg, and...
  18. we are all due more than a 100k though. if this was really figured out and could be proven to be drug induced, im sure it would be. Also based on some symptoms described there could be some more serious things going on then just ed. for post accutane and fin. and yes i know ed is serious enough as well. I agree with the second part, not so much the first. this is a little off topic, but alot of cancer kills because people might be living with it for years and dont even know it, by the time they do its too late. alot of times its accidently discovered from other routine exams. thats why they do some screenings and are looking at some newer blood tests for early detection. let me just add noone has cancer on here, to not freak anyone out.
  19. I highly doubt its cancer at this point, especially for your age. Some people have been dealing with these same type symptoms for years. If it was cancer they'd be dead by now. I just got this same blood test you did. it does seem to cover alot. So lets see.
  20. This is how this relates. im thinking right here lymphatic system. what I posted awhile back how it might regulate brain health. this can be associated with lymphoma. not that you have this. Im also thinking k2 here still. Why It Is Done Serum protein electrophoresis is most often done to help diagnose and monitor a wide variety of conditions. These include: Some forms of cancer. Problems with the kidneys or liver. Problems with the immune system. Conditions that lead to poor nutrition. What Abnormal Results Mean Increased alpha-1 globulin proteins may be due to: Acute inflammatory disease Cancer Chronic inflammatory disease (for example, rheumatoid arthritis, SLE) Decreased alpha-1 globulin proteins may be a sign of: Alpha-1 antitrypsin deficiency Increased alpha-2 globulin proteins may indicate a: Acute inflammation Chronic inflammation Decreased alpha-2 globulin proteins may indicate: Breakdown of red blood cells (hemolysis) Increased beta globulin proteins may indicate: A disorder in which the body has problems breaking down fats (for example, hyperlipoproteinemia, familial hypercholesterolemia) Estrogen therapy Decreased beta globulin proteins may indicate: Abnormally low level of LDL cholesterol Malnutrition Increased gamma globulin proteins may indicate: Bone marrow cancer called multiple myeloma Chronic inflammatory disease (for example, rheumatoid arthritis) Overactive immune system (hyperimmunization) Acute infection White blood cell cancer called Waldenstrom macroglobulinemia Chronic liver disease
  21. that is kind of messed up, there should be some dialog about it. I would say stick around for now, the more people we have looking into this the better. I feel there is good timing right now of some things being simultaneously looked into. On vitamin A, I could say this for about 20 other supplements as well. I also feel ive taken worse things then vitamin a. Im not sure based on some of these universal symptoms that also seem to relate to PFS and CFS its vitamin a exclusive. It maybe was an environmental trigger. Generic. Ive self induced much worse symptoms over the past year and it had nothing to do with ingesting vitamin a. if my liver was already stressed, thats one thing. So far I havent found any signs of that short of a liver scan.
  22. That's excellent. Good but not good. Maybe another crack in the case. This could circle around some things mentioned on here. I'm going to see if I had this blood test, if not I'm getting it today.
  23. it sounds like in the US, there is even a better liver test then fibroscan that mayo invented its called a MRE liver scan. I'll continue to monitor blood liver function tests, but im not sure if I'll be able to get either one of these tests ordered by a doctor with no other markers of liver inflammation. The best I could do is show them the study you posted and my history of accutane and how it might affect the liver. If tanedout was able to get a liver ultrasound, with no elevation of liver enzymes, maybe its a possibility. I think this could be a two step process. Accutane stops cancer growth. Stops cells from dividing. Accutane stops growth. Depending on when you took accutane, you might not reach your full growth potential. Your bones dont reach their full growth potential. Eventually once you stop growing, just like in normal life, the opposite might start to happen, that paradoxically increases/speeds up the aging process.
  24. I meant a test I havent had yet that im pretty curious about the result, because I could see this making sense. LAC is found in, but not limited to, patients with systemic lupus erythematosus; LAC is associated with other autoimmune disorders and collagen vascular disease
  25. It was at a university not too far from me. Mayo turned me down. I tried going directly through their neurology department. maybe getting a referral to a internal medicine doctor there would be the better route to go and thats probably how you get routed to what they feel are the appropriate specialists. idk. I might try again at some point. So the neurologist I went to was going to give me the tilt table test for POTS, but now he wants me to see a different specialist before this test. Unfortunately he didn't seem to have much or any knowledge of the achr ganglionic neuronal antibody, which was disappointing, but this next specialist might. he did spend about 2 hours with me though. Got some more blood tests while I was there. One that stands out is Lupus anticoagulant work-up Maybe this can detect lupus type symptoms even with a negative ANA antibody. I should get this result in a few days.