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Tania's journal of drug treatments and other ME things

Discussion in 'General Treatment' started by taniaaust1, Dec 28, 2011.

  1. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I’ve been doing hair mineral testing for 3 years and mine are still not all where they should be.

    My cobalt has gone from below the calibration limit to barely registering, despite MethlB12 supplement.

    My Manganese is skating along the lower edge of the reference range despite supplement.

    It took 3 years to get my potassium into range.

    It took 1.5 years to get my molybdenum into range. Since too much Mo is a bad thing, I then cut my supplement dose in half and my Mo dropped right back down (well, in the course of 7 months). I take my Mo as a separate pill.

    P.S. Bismuth is an Additional Element, not a Toxic Element.
    taniaaust1 likes this.
  2. taniaaust1

    taniaaust1 Senior Member

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    ahh thanks. Maybe it is the water causing my very high bismuth level? Since I moved at the start of the year, I went from drinking rainwater only at my last house to now drinking bottled spring water (thou I do have a rain water tank now but its not quite set up yet, still need the plumbing for it done).

    Unless its hidden in one of my supplements eg the lithium orotate, the molyzinc or one of my methylation supplments or the florinef or the clondine.. all which Ive only been on since the first hair test was done.

    .........

    Thanks to you both for explaining its not toxic.I havent got black lines on my gums, I'll watch out for that.
    Valentijn likes this.
  3. taniaaust1

    taniaaust1 Senior Member

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    What brand and dose is the molybdenum pill you are taking? (the one I was and still are on, is only mixed with the zinc which I shouldnt up more).

    I wonder why your cobalt is sooo low.. when mine is going sooo high from MethB12 supplementation. What dose of methylB12 do you take?
  4. taniaaust1

    taniaaust1 Senior Member

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    My comments on my hair test

    From trying to research my results, I discovered a few things. There seems to be some kind of link between molybdenum and the Tungstan (both which were previously at basically nil). I cant get my head around what the link exactly is but when I do a search using the words "Tungstan physiology".. stuff on molybdenum comes up.. Molybdenum can be substituted in the body for Tungstan??? :( I wish I could get my head around how these two things are connected, if someone knows.. please explain it to me). Due to me being deficient in one of those, has it made me deficient in the other???

    Its like reading Russian (and I dont read or speak that) but obviously there is a connection there between the things due to all the thing which come up about molybdenum when searching the Tungstan physiology.
    .......................................................

    Tungsten isnt something I thought about possibly supplmenting with before but when I look at things online, it appears it could be important and may help with various things.

    Tungsten aids weight loss http://www.ergo-log.com/tungstenweightloss.html (Im putting on weight).

    Germanium which I had basically none.. maybe it will turn out to be important? http://www.livestrong.com/article/329971-what-are-the-health-benefits-of-germanium/ I was expecially interested in the following about Gernanium supplementation.
    so maybe I should be trying to supplement that. The article also says it helps to prevent osteroporosis which I guess we'd all be at a higher risk for due to not being able to exercise.
  5. taniaaust1

    taniaaust1 Senior Member

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    The Other Section of my Hair Test Results as a Comparison of my Last Test.

    At least there WAS some actual improvement with this, toxic ratios are all good and if I just start potassium supplementation, that hopefully fix a couple of the other ratios.

    To fix the copper to iron ratio one, would this mean my copper still needs to come down more? One of the copper ratios has improved over the couple of years Ive been working to get it down to within the normal range but this other ratio with it is still wrong.

    [​IMG]
  6. taniaaust1

    taniaaust1 Senior Member

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    23andME test

    Ive had my 23andME test come back (so I have all my test results back now except for my last two lots of blood tests which I cant get to the dr to get). The 23andME test brought both some good as well as some shocking news to me. I dont carry the common breast cancer gene as I feared I may, (my grandma died from TWO DIFFERENT kinds of breast cancer before she was 60, she had a long battle with cancer, unfortunately one of the forms she had was rare and I dont know if 23andME tested for that gene).

    Unfortunately the 23andME test gave me some very bad news, my other fear came up ... a fear I have due to my very bad memory issues which I keep wondering could develop into this or even be the start of it. My test came back saying Im at a high risk of getting Alzheimer's Disease. Im at a 40% risk from the age of 50 (Im 43 now) with my genes compared to the normal 7% risk of this :aghhh: . Scary to think my risk is probably even higher then this genetic risk due to I cant exercise and are far less active then people usually are... of cause exercise was suggested to lessen this risk :alien: . My nanna, her brain is deteriorating very fast (she's so bad now I wouldnt be surprised if a dr got her removed from her home at anytime now). I'd been worried before I got this result that she could have Alzheimers but had no knowledge of family members who got it.

    The other two risk factors which came up for me are in my family so I was well aware of those. To find out that I have a gene and are a carrier for hemochromatosis, well that really surprised me. Funny thou I have that as due to the ME I at times get very low iron stores even thou due to my insulin issues I have to eat meat 3 times daily (my iron stores have been low enough in the past that Ive been called anemic on a test).. maybe things would be a little worst for me if I wasnt a carrier for hemochromatosis? (I cant take iron when my levels are low as it affects my IBS-C badly).

    I bet someone is wondering if Ive downloaded and run my raw data from 23andME into geneticgenie for the methylation and detox results, my boyfriend did that for me today and emailed me my results (my dial up connection was an issue for me to download my raw results myself). I thou need to go and bed rest so will have to put those results up another day or tonight. It was as bad as I was expecting it to be and I found out I was correct in having a certain mutation I was already sure I had, due to various signs and symptoms I have which I knew if I had this mutation it would explain those. Anyway.. those results are another :aghhh: .

    [​IMG]
  7. taniaaust1

    taniaaust1 Senior Member

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    sighs..this is crazy. Now Im having an allergic reaction to plums. Ive been bad all week with breaching my diet and having 3 tiny prune plums and had been completely fine with those till tonight, now the inside of my mouth is almost covered in welts. I have spots throu my whole mouth, a sore tongue covered in those little red spots pin???? whatever they are called, parts of my mouth swelling and red and spotchy esp the inner cheek area and soreness going down my throat too. I got this reaction very suddenly, I could actually see the spots happening. The reaction started about 1 min after I ate the plums.

    A little scary, if this was a bit more I'd probably be ringing the ambulance. (I'd take photo of this if it wasnt night.. photos taken in my mirror dont work at night).

    Anyway.. just got up to share what is going on.. going back to bed.
  8. Valentijn

    Valentijn Activity Level: 3

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    Getting new allergies always pisses me off ... there's already so many things I can't eat, and it just isn't fair when that list gets even longer :(
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  9. taniaaust1

    taniaaust1 Senior Member

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    My Methylation results from the DNA data from my 23andME test which was run throu genetic genie.

    I'd been worried for a while that I probably had a CBS mutation going on as I'd read that this needs to be treated before trying to treat my MTHFR C677T mutation. I'd strongly suspected that I had a CBS mutation due to having a few incidences where I could smell ammonia coming from my skin (when that happens it can swing me into a mood disorder so I was strongly aware its some kind of biochemistry thing going on to do with the ammonia smell), eatting eggs..had started making me feel nausous. The thing which first made me suspect a CBS mutation was my original hair test results of having the no molybdenum and I was then completely convinced that wasnt diet related but genetic related after I supplemented molybdenum pills daily for a couple of years and that second hair test come back showing I was still deficient.

    Anyway, it turns out I was correct and it is a CBS mutation causing those things for me to be going on.

    My lithium deficiency must be genetic related too as it dont respond at all to supplements there but as yet who knows what mutation does that. If anyone knows if there is a research mutation finding on that, please let me know
    ..................

    I didnt know that genetic genie now does free individual reports based on ones results. It was a real relief to see that rather then have to try to work it all out here.

    Here's the report with my results
    [​IMG]

    MTHFR Mutations
    First we'll look at a few of your MTHFR mutations. According to research, these mutations are important and can be implicated in various disease states.
    You have 1 homozygous (red) mutation(s). These are the worst type of mutations. They include:
    o


    MTHFR C677T
    MTHFR C677T

    One function of MTHFR (Methylenetetrahydrofolate reductase) is to help convert homocysteine to methionine. A MTHFR C677T mutation means that the MTHFR enzyme may have trouble performing its task leading to high levels of homocysteine. According to Dr. Ben Lynch, impaired function of the enzyme


    can cause or contribute to conditions
    such as Autism, Chronic Fatigue Syndrome, Fibromyalgia, Miscarriages, IBS, many birth defects, Multiple Sclerosis, Alzheimer's, Bipolar Disorder, blood clots, Stroke, Chemical Sensitivity, and many other conditions.
    MTHFR C677T can also lead to high homocysteine. You can ask your doctor to test for homocysteine levels. If you have high levels of homocysteine, it may be related to your MTHFR C677T mutation. But even if one has a (+/+) or (+/-) mutation, it does not necessarily mean that they will have high homocysteine levels.

    As S-adenosylhomocysteine (SAH) accumulates, the COMT enzyme may become impaired. Inhibiting COMT can increase dopamine levels for those with COMT V158M (-/-), but for those with COMT V158M (+/+), the high level of SAH can lead to behavior problems and mood swings according to Dr. Amy Yasko.

    Nutritional Support of MTHFR C677T
    Supplementing with Folate (preferably as L-Methylfolate) can help alleviate the effects of MTHFR C677T as well as lower one's homocysteine levels. There are a lot of different types of folate on the market, and I recommend reading


    this article by Dr. Ben Lynch about folate

    .It might be a good idea to avoid synthetic folic acid and folic acid fortified foods such as cereals. Also, lowering other doses of forms of folate or folinic acid may be important as it can compete with L-methylfolate.
    To avoid adverse effects, one can start with very low doses of folate and work to higher doses. Side effects can occur as a detoxification effect as this pathway becomes unblocked. In the case of extreme adverse effects, time-released niacin and/or potassium may be able to stop the side effects.



    All of Your Other Mutations
    Now we are going to look at all of your mutations. You do not necessarily need to worry about all of these mutations, but certain mutations may cause problems in certain individuals. Genetic Genie does not look at the expression of your genes, it only looks at specific gene SNPs. Keep in mind that even if you are homozygous or heterozygous for a certain mutations, it doesn't necessarily mean there is a problem with the functioning of that gene. You have 4 homozygous (+/+) mutations and 4 heterozygous (+/-) mutations.
    Here are your homozygous mutations as indicated in your SNP gene table above (not including MTHFR):
    o


    VDR Taq
    o


    MAO-A R297R
    o


    MTRR A664A
    o


    CBS A360A
    Here are your heterozygous mutations as indicated in your SNP gene table above (not including MTHFR):
    o


    COMT V158M
    o


    COMT H62H
    o


    MTR A2756G
    o


    MTRR A66G
    CBS Mutations

    CBS (cystathionine beta synthase) catalyzes the first step of the transsulfuration pathway, from homocysteine to cystathionine. Dr. Yasko considers addressing CBS mutations as first priority aside from addressing the gut. CBS defects are actually upregulations. This means the enzyme works too fast. In these patients, it's common to see low levels of cystathionine and homocysteine since there is a rapid conversion to taurine. This leads to high levels of taurine and ammonia. The NOS mutation can exacerbate ammonia issues. Furthermore, addressing CBS can help lower excessive levels of taurine and help detoxify ammonia.

    Dr. Yasko recommends that one supports their CBS enzyme for at least 6 weeks before starting methylation supplements. When one tries to take nutrients to support their methylation cycle before addressing the CBS upregulation, all the nutrients basically lead to nowhere. Instead of generating glutathione, the supplements may deplete the rest of the cycle.

    Addressing the CBS Mutation

    Before one starts adding supplements, it may be a good idea to get a baseline UAA from a doctor. This will determine one's Taurine levels. After about 4-6 weeks of following the CBS protocol (outlined in the book Autism: Pathways to Recovery), one should retest their UAA. Once one's UAA is at 50% or below, one can add the methylation supplements. It's important to regularly use UAA testing as taurine should remain at 50% or less. If taurine climbs one may need to address ammonia. Yucca Root and Charcoal/Magnesium flushes can help address high ammonia levels. High doses of L-Ornithine may be effective as well according to medical studies.

    The CBS mutation not only leads to excess taurine, but can also lead to excess sulfur groups. For this reason, it may be a good idea to limit sulfur intake. Excess sulfur intake can trigger a stress response or chronic stress.

    Sulfur is normally bound to amino acids, but the CBS upregulation can instead release the sulfur groups to sulfites in the body. There are many things one may need to avoid with a CBS upregulation. Some of the items include garlic, broccoli, eggs, onions, legumes, meat, Epsom salt baths, alpha lipoic acid, glutathione, chelating agents such as DMPS, NAC, Milk Thistle, various other supplements, and much more. Please look to other sources for foods and supplements that are high in sulfur.

    Supplementing with molybdenum may help as excess sulfites deplete it. Manganese is also important in ammonia detoxification. A Low protein diet can help as the body will have less ammonia to detoxify. It's important to measure molybdenum and manganese with a minerals test before supplementing.

    BH4 can also become depleted with a CBS upregulation. BH4 helps regulate neurotransmitters and mood. Other mutations, such as MTHFR A1298C, Chronic bacterial infections, and aluminum can also lead to low BH4 levels. Lack of BH4 can lead to mast cell degranulation and possibly mast cell activation disorder (MCAD). While difficult to obtain, BH4 supplementation may help in the presence of BH4 deficiency.

    Other supplements that may help are Slippery elm bark for the gut. And according to Dr. Yasko Molybdenum, EDTA, carnosine, and zinc may help balance the copper/zinc ratio.
    The CBS Upregulation is a complicated subject and for more info, I suggest purchasing or finding the book Autism: Pathways to Recovery. Searching for other websites or online support groups talking about the subject may be of help as well.


    MTR/MTRR Mutations
    MTRR (Methionine synthase reductase) helps recycle B12. The combination of MTR and MTRR mutations can deplete methyl B12. MTR A2756G, MTRR A66G, MTRR H595Y, MTRR K350A, MTRR R415T, MTRR S257T, and MTRR A664A all work together to convert homocysteine to methionine.

    MTR (5-methyltetrahydrofolate-homocysteine methyltransferase) provides instructions for making the enzyme methionine synthase. Methionine synthase helps convert the amino acid homocysteine to methionine. To work properly, methionine synthase requires B12 (specifically in the form of methylcobalamin). An MTR A2756G mutation increases the activity of the MTR gene causing a greater need for B12 since the enzyme causes B12 to deplete since it is using it up at a faster rate. Mutations in MTR have been identified as the underlying cause of methylcobalamin deficiency. Megaloblastic anemia can occur as a consequence of reduce methionine synthase activity.

    A homozygous mutation of MTR A2756G is relatively rare (<1%). Some studies have demonstrated that people with a combination of MTHFR C677T and MTR A2756G have persistently high homocysteine levels unless they are treated with both B12 and folate.

    Nutritional support of MTR/MTRR

    According to Dr. Yasko's clinical experience, one should first take into account COMT V158M and VDR Taq status. She finds that those with COMT V158M + and VDR Taq - mutations often don't tolerate methyl donors well. She says that those with these mutations should carefully balance their ratio of Hydroxyl B12 and Methyl B12. She often suggests low dose cyano B12, adenosyl B12, and vitamin E succinate. High dose methylcobalamin (5 mg per day and above) may be implicated and necessary with this mutation - especially if one is homozygous and/or has MTRR + mutations. The level of B12 one needs depends often depends on the number and combination of these mutations. Like everything else, one should slowly build up doses of both methylcobalamin and/or hydroxocobalamin to avoid adverse effects.

    DMG and the supplement TMG also stimulate the BHMT pathway to convert homocysteine to methionine, but one should take caution if they are sensitive to methyl donors.
    Patients with MTR/MTRR may also benefit from the combination of GABA and L-Theanine. L-Theanine is a methyl donor. They may also benefit from taurine, Pycnogenol® pine bark extract, and grape seed extract.

    MAO-A R297R

    MAO-A (Monoamine oxidase A) is a critical enzyme involved in breaking down important neurotransmitters such as serotonin, norepinephrine, and dopamine. Males only have one allele since the gene is inherited through from their mother since it is located on the X chromosome. Only females can be heterozygous (+/-) for this mutation. When a (+/+) MAO-A mutation is combined with a (+/+) or (+/-) COMT V158M mutation, one may be more prone to develop Obsessive Compulsive Disorder (OCD), mood swings, aggressive and/or violent behavior, and personality disorders. Chronic infection can deplete tryptophan stores, and this can be tested with an organic acid test (OAT) and urine amino acid tests (UAA) according to Dr. Yasko. This test may indicate high levels of 5HIAA (5-hydroxy indole acetic acid).

    Nutritional support of MAO-A R297R

    Dr. Yasko says that her Mood S RNA formula and 5HTP may help balance serotonin. Furthermore, she satiates that BH4 deficiency (often caused by aluminum toxicity), increased levels of ammonia, and MTHFR A1298C are all factors that can negatively impact serotonin levels.

    There is not a whole lot of information out there on how to increase the activity of the enzyme. And while not nutritional, there is a product called Respen-A developed for Autism with intention of increasing MAO-A activity. Respen-A can only be obtained from a few compounding pharmacies and requires a prescription.

    COMT Mutations

    COMT (catechol-O-methyltransferase) helps break down certain neurotransmitters and catecholamines. These include dopamine, epinephrine, and norepinephrine. Catechol-O-methyltransferase is important to the areas of the pre-frontal cortex. This area of the brain is involved with personality, inhibition of behaviors, short-term memory, planning, abstract thinking, and emotion. COMT is also involved with metabolizing estrogens.
    COMT (-/-) individuals can usually break down these neurotransmitters efficiently, but COMT (+/+) individuals may have trouble breaking these chemicals down from impaired function of the enzyme. With a COMT + status, people may have trouble with methyl donors. This can lead to irritability, hyperactivity, or abnormal behavior. They also may be more sensitive to pain.

    Nutritional support of COMT mutations

    Since COMT + individuals often have trouble tolerating methyl donors, they tend to do better on a combination of hydroxy B12, adenosyl B12, and/or cyano B12. Methyl B12 is usually much easier to tolerate for those that are COMT (-/-).

    VDR Mutations

    VDR (Vitamin D Receptor) encodes the nuclear hormone receptor for vitamin D3. Low or low normal vitamin D values are often seen in those with chronic illness and even the general population. Low vitamin D is related to a lot of neurological and immunological conditions. Vitamin D stimulates enzymes that create dopamine.

    VDR Fok has been associated with blood sugar issues and poor pancreatic activity.
    With COMT V158M + and a VDR Taq + status, the body may have further trouble tolerating methyl donors. VDR Taq (-/-) individuals may already have higher levels of dopamine, and it's worth noting that combinations of variations COMT and VDR Taq can lead to a wide range of dopamine levels. Those that are VDR Taq (+/+) and COMT (-/-) may have lowest dopamine levels.

    Nutritional support of VDR Mutations

    Dr. Yasko advises patients to rotate methyl-containing supplements (instead of using them all daily) for those with COMT V158M + and VDR Taq (-/-).
    Ginkgo biloba may increase dopamine uptake. Small doses of Mucuna Pruriens contains natural dopamine, and can be helpful for those with low dopamine.
    VDR Fok + can impact vitamin D levels. Research shows that supplementing vitamin D may be beneficial. Sage and rosemary support vitamin D receptors. It may be necessary to support the pancreas when having a VDR Fok + mutation using vitamin and digestive/pancreatic enzymes.
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  10. taniaaust1

    taniaaust1 Senior Member

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    Follow up Research Study

    After my appointments for the research study were cancelled a few times.. finally the days are now here. Ive been off all my supplements and meds for the study and cant wait for it to be over so I can go back onto them (today Im in pain and wishing I could be taking my normal meds). The study is now in full swing but they still looking to find people who were in the previously study who have moved, to get the numbers they need to publish the follow up study. Fingers crossed they will find enough of the others after all these years (7 years). They still seem hopeful they will find enough of us again.

    Im soo tired today, Im about to go back to bed and sleep this afternoon. The BP monitor monitoring me for the study woke me up this morning so I only just got 5hrs sleep (I really need 9 a night). I also are wearing an acuometer on my ankle (have I got the right word? measures movement) for the study all this week.

    Tomorrow Im getting picked up for the neuropsych assessment and Saturday picked up again(or maybe it was Sunday) as I have the brain scans to be done. The study people have arranged the transport so I suppose I may be sitting around the hospital for a while waiting to be brought back home (or waiting to be called in) so I will use that time to catch up on things. Im meant to be doing a book review for this website but havent finished the book yet as just too much has been going on here (lately Ive been going to the new local dr weekly), so the hospital appointments will be a good chance to finish it so I can then get started on some serious writing.

    Then back to the local dr on Thursday, she wanted me to go back to her last week but I just couldnt fit the medical appointment in without risking crashing myself (that will be 4 medical appointments this week).

    Unfortuately thou I still cant get to my specialists and thou now DisabilitySA has been contacted TWICE by drs telling them arrangements need to be made so I can go to my specialists (one contacted them in writing while the other rang them),nothing still has been arranged to help me. Its a let down from the highest levels, the state disability service who discriminates towards ME/CFS (Im positive if I didnt have this diagnoses that they would of arranged me to get to the specialists I need to see).

    I noticed with this BP monitoring.. that my BP isnt just doing its swinging high and low thingy but I seem to actually have high BP during much of the monitoring eg 150-160 systolic much of the time.. (except when Im in bed laying) (even seeing those high numbers sometimes while sitting.. diastolic high). So I can see my BP issues have worsened over the past 7 years since I last had 24 hr monitoring done with the last research study (Crazily joining studies is the only way Ive been able to get my BP monitored!! How slack is that of the medical profession). . I think now I need more then just be having treatment for my orthostatic hypertension. sighs.. another thing drs should and need to be monitoring. The fact Ive been taking clonidine for the orthostatic hypertension (a big issue with standing), has been discuising that I get hypertension a lot of the time when sitting and it seems right now to be my daily norm.

    Another thing I saw this the monitoring is that last night thou I didnt wake up in a fright when the monitor started inflating.. my heart rate when I just woke up from being in a deep sleep was at 98. That surprised me as used to get very low eg 52 beats per minute heart rate during the night.
    ..............................

    3.30pm and Im off to bed, probably for the night. Im tooo tired.

    I added in my gene detox results to my signature.. lots of mutation going on there .. which affect areas often talked about in ME/CFS gluthionine, mitrochondria, issues with B12, slow or no drug metatolism issues so hence many things are more toxic to me. (I have a gene which makes 25% of pharma drugs an issue to me.. and the drugs on that problem list are the drugs Ive had issues with. No wonder Ive felt like I was actually poisoned by some of those drugs!!). etc
  11. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I take Solgar molybdenum amino acid chelate, 150 mcg. twice/day.

    I take 1000 mcg. of sublingual MethylB12. I am going to start a little AdenoyslB12 again. I am afraid to go any higher on the B12 because I am not taking any supplemental folate. I am afraid to start the folate until I can find a doctor who understands methylation because some people have had bad reactions to the active B/methylation supplements.
    taniaaust1 likes this.
  12. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I have been ignoring the Additional Elements because I am having enough difficulty getting the Nutritional Elements balanced.

    However: (I did not check any farther back than 3 test for the following)
    My tungsten has been below the calibration limit on my last 3 tests. I am also gaining weight. I currently weigh more than I ever have.

    Over my last 3 tests my germanium has dropped from the bottom of the reference range to barely registering. I have been diagnosed with osteoporosis.


    I am already taking so many pills that I hate to add any more, but I may need to. :aghhh:
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  13. brenda

    brenda Senior Member

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  14. taniaaust1

    taniaaust1 Senior Member

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    Im a mess right now.. complete misery, wishing I'd just die to get out of what Im feeling right now.. Im in soo much physical pain. I really need my meds and supplements but I'll be out of the study if I take them. Cause of the pain Im in.. my BP is 155/105 right now (sitting with legs up, highest Ive seen my diastolic in the past 24 hrs, it went up with my pain level). I have bad period pain which is making me want to cry, a headache (probably cause my BP is too high or due to fever.. Im sweating), Im having a hot flush due to the high BP, also got right right now an imflammatory spinal pain and to top that off Im so goddarn tired cause of lack of sleep due to the BP monitor waking me up so only last night got 5hrs sleep instead of the 9hrs I need. Im in so much pain I cant even rest so Im getting more and more things flare up by the hour. (I wish I could dose myself up on my Temazapam just so I could sleep and get very needed rest). Im too tired to know what to do with myself.

    I'd ring the study coordinator as there was one pain killer they said I could take but Ive forgot what it was and Ive lost the private phone number to the head researcher running the study too. Im too sick to find them. I think Im a real fever, I feel like Im burning up (that usually means I do have a real fever, I dont feel good enough to get up and get my thermometre).. being in this study and not taking my meds and supplements is really knocking me around.

    I cant go and have a cool bath to cool myself down due to having this BP monitor on which Im supposed to leave on thou I have now had it on for 24hrs so could take it off but I dont want too as its taken 7 years for my BP issues to be monitored in this way again (none of my drs have monitored my severe BP dysregulation so this is the first chance for me to be able to see what its doing now), so I want to make the best use I can of it before this monitor goes back to the hospital tomorrow.

    Im probably going to bawl at my neuropsych appointment tomorrow as I feel so sick!!! and so terribly tired. (I go throu the posts to me on this thread next time Im here.. Im feeling too sick to pay things much attention right now).
    Valentijn and heapsreal like this.
  15. taniaaust1

    taniaaust1 Senior Member

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    My specialist has me on 5000mcg (taking sublingually) MethylB12, so probably explains why my cobalt is much higher then yours. 5000mcg was his starting dose for me.

    Thanks, I'll check the Solgar moybdenum out. That one does sound a lot better for me (the current one Im taking which my old specialist had put me on, is only 100mcg)
  16. taniaaust1

    taniaaust1 Senior Member

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    That's why I was hoping to find a muti-supplement which includes many of the additionals, I hate the idea of individually taking any more things. Just cause science doesnt fully know what those things do yet, it doesnt mean they may not be necessary in ways (I hardly trust science anymore due to the gaps in it, so many things not having money put into them to research them, much important stuff must be being missed). But yeah, I know how you feel about just wanting to work on the scientifically fully agreed on important ones..
    Little Bluestem likes this.
  17. taniaaust1

    taniaaust1 Senior Member

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    I guess everyone has figured out Im feeling much better today :). One keeps forgotting how horrid it is to feel THAT SICK till one is that sick. Its not imaginable till experiencing it again, to comparison to today is startling. Guess that will teach me for pushing it yesterday while I was being monitored, I also did too much the day before. With being off the supplements I should be cutting back to less then what I usually do on them.

    At least I learnt something from all this. I already knew that I start feeling yuck when my BP hits 170 systolic but still had no idea at what point I felt yuck with my dystolic (dystolic 105 was horrid.. Im fine when its 100..so how I feel must shift at the 105 point.. it ended up at 107 and was up very high for 1.5hrs before it dropped again). I was often blaming my POTS for symptoms that are probably issues of my BP. I really need to find a dr to work with me on this and monitor me occassionally, its an extreme risk on my health. In the past my "dystolic" has been as high as 137 during my high BP spikes.

    I was reading about about hypertensive crisis/emergencies (something Id avoided researching further for a while as in the past Ive met a couple of people with the same BP issues as me with the orthostatic hypertension etc and they ended up in heart failure due to the issue and they werent old). Its scary to know Im getting symptoms of hypertensive emergency when my BP goes up that high. I also ended up in confusion last night while my BP was up to high. I almost wet my bed due to being confused, I actually went to pee in my bed. I thought I was in the toilet while I was still in bed and then got further confused when I went to get my pants down to go as I was laying on them, it was this which brought me to my senses and saved me from a wet bed. how sick I was was affecting my brain.

    Maybe this is another thing I can bring up to the new dr and see if she would take on helping me and monitoring me with this (she's only just agreed after I pushed her at two appointments and was so upset, to help me with the POTS stuff a bit, umm so I dont know if its wise to dump more at her just yet. Ive overwhelmed far too many drs then they dump me as a too complex patient that they dont feel safe being responsible for).
    Little Bluestem likes this.
  18. taniaaust1

    taniaaust1 Senior Member

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    Wow 220, Im surprised they didnt put you in hospital to bring it down there. Thanks, I never knew celery juice could help with hypertension.. does celery work more so as a BP regulator? as my BP can go low too (when Im laying down).

    I cant stand the taste and after taste of stevia...
    ...............

    I just looked up the carb content of celery .. " A serving of celery juice also provides 5 g of carbohydrates, just 3.8 percent of the 130 g of carbs your diet should include. "

    My daily carb amount I can have before I get bad side affects from my hyperinsulinemia is a lot less then half of the normal daily recommended carb intake. I try to stay below 40g carb per day and my specialists for my insulin issue have told me not to have fruit or veg juices as they are concentrated in sugars but seeing celery juice is only 5g a serve I may be able to include this.

    Brenda.. how many serves thou of celery juice are you having daily to get the affects you are having with it on your BP? Just one? or are you having more?
  19. brenda

    brenda Senior Member

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    Tania Bostrom

    I was visiting a hospital at the time so the doctor took me to one of the wards from her surgery to lie down and a nurse monitored my BP every few minutes and it came down to 145 after half an hour. As it is only a day hospital, I would have been transferred to a regular hospital for the night had it not come down and dying to get home to juice some celery. While it was that high I did not feel much different, not confused or anything, just a little more tense than usual. It has never gone that high before, though I have had spells where it has been around 145. Dystolic is always around 85. Using celery juice before this episode, got it down to around 125 but it has gone up again due to thyroid having more antibody attack due to iodine. I am registering around 130 atm (however 113 when I woke up yesterday) but yesterday in my GP's surgery it was 160 because I get the white coat effect. It is very unstable. It takes about a week to kick in completely.

    I use half a head of celery which makes half a glass of juice with my juicer which is the best type - the masticators. The centrifugal ones produce too much heat and I dont know if this affects the celery juice effect on BP. Probably not. I do that once a day. I have not tried more than that.

    Celery juice has a lot more beneficial effects. It is very good for various minerals. I should stay on it. I do not know whether it is a regulator or not.
    taniaaust1 likes this.
  20. taniaaust1

    taniaaust1 Senior Member

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    thanks Brenda. Wow half a head of celery to make half a glass of juice. Sounds like you must be going throu a heck of a lot of celery. Its been a while since Ive done juicing so I forgot just how much of the things one goes thou.

    The juice which had the best affect on my body so far has been wheatgrass but I stopped growing and juicing it as its just so messy and takes effort to do but just a tablespoon of that a day I found was good for my health (thou I was doing that back before I knew I had BP issues so I dont know what affect that would be on BP).

    There was another combo of 4 things which I found helpful too but I forget now what they were.. I think beetroot was in it (maybe with the apple? and celery?).. and a spice of some kind was included.

    I did do apple and celery juicing together back then too (before I had BP issues) but didnt notice any positive affect on my health with that combo so stopped doing it.

    I experimented with straight carrot juice and found that not to be helpful. I did all different kinds of juice combos and only the wheatgrass and this other one combo I came up with actually made me feel a little better. (Pity I forgot now exactly what it was.. I stopped doing it thou as it was all too hard).
    brenda likes this.

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