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This topic contains 39 replies, has 5 voices, and was last updated by  Linda L 1 year, 3 months ago.

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  • #458491
    Linda L
    Participant

    Sorry, I’ve made a mistake. Oroxine doesn’t come in 25. A new tyroid drug is coming here Eltroxin. It has 25mcg, but it is a capsule filled with liquid. 33 side effect!

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, LDN, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

    #458492
    Maz
    Keymaster

    Hi Linda,

    Sorry to hear that – frustrating! Perhaps you can talk with your doc about taking Oroxine on alternate days with 75mcg and 100mcg? It would be trickier to manage, memory-wise, so good record-keeping would be needed.

    88mcg x 8 days = 704mcg

    So, equivalency-wise, it would be pretty close to do 4 days at 75mcg and 4 days at 100mcg = 700mcg

    Just a fellow-patient thought to discuss with your prescribing doc, Linda. Thyroxine is very slow-acting, so alternate day dosing shouldn’t be too much of an issue, especially as compared to making such precipitous 25mcg drops and increases, which seem to be leading to the big swings in your labs.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #458493
    Linda L
    Participant

    This is my dose now. When I wrote 75/100 it meant one day 75 and a day after 100. My last results were done after taking this dose for four months.
    Sorry if it wasn’t clear.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, LDN, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

    #458495
    Maz
    Keymaster

    Oh dear, yes, that was unclear to me. Thought you’d switched back to the other dose during that timeframe. Ho hum…back to the drawing board.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #459801
    Linda L
    Participant

    My new results for thyroid are:
    S TSH 1.17 /norm 0.5-5.5/
    S TgAb 2625 /<115/
    S TPOAb 600 /<35/
    Hips of tests negative /good/, coeliac d. unlikely
    CRP 74 /down from 120, 80/, ESR 59 /down form 68/
    S IgE 951 /<100/
    ANA Titre Patern 1:640 Homogeneaus
    Zinc too low, copper too high /is it because I colour my hair?/
    C pneum low postive
    EBV IgG detected, EBV IgM negative
    S Caerulopla 0.43 /norm 0.18-0.36 G/L/

    That test was made when I was three weeks on a strict diet. Should I worry about thyroid results?

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, LDN, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

    #459802
    lynnie_sydney
    Participant

    Zinc too low, copper too high /is it because I colour my hair?

    Linda, with low zinc and high copper I’d be thinking of getting tested for Pyroluria. I think you are working with a naturopath? If yes, she may know about this.It’s done via a urine test but it’s quite specific and has to be handled carefully by the lab you use for the draw. You can check with your local labs if they can do this (Some Douglass Hanley Moir labs will do the draw, you have to check with the individual outlet). The sample is then sent off to Applied Analytical Labs in Queensland who will test it for urinary pyrroles. If you are positive, treatment is primarily via zinc and B6 (or the active form P5P) supplementation. Plenty of info on this online. Here’s one Australian site that gives a good overview: pyroluria

    note: Even though B6 is depleted in this disorder, most practitioners these days don’t bother doing a blood test for this. There may be plenty of B6 in the bloodstream but it’s not necessarily getting into the cells.

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    abx from Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg. Topical bio-identical estradiol, DHEA +

    #459813
    Linda L
    Participant

    Thank you Lynnie. B6 is good. I can ask my naturopath, but I don’t have Pyroluria symptoms.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, LDN, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

    #459824
    lynnie_sydney
    Participant

    Okay. Maybe you just need to up your intake of zinc. Zinc and copper are antagonists in the body and they both regulate physiological pathways. So, increasing zinc considerably should reduce your copper (you need much more zinc than copper). Talk to your naturpath/doc about this and, again, plenty of info online. There’s some here: zinc and copper imbalance

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    abx from Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg. Topical bio-identical estradiol, DHEA +

    #459863
    Linda L
    Participant

    Lynnie, thank you for this excellent article. I had a visit to my naturopath yesterday. I have to stay on the same diet for another three months or maybe forever /tests were made 1.5 month into the diet and results don’t show improvement/ As per your article I am surprised that she didn’t prescribe zinc supplement for me. The imbalance between zinc and copper is huge. She told me to eat two tablespoons of pumpkin and sunflower seeds every day for three months and said that it is not good to increase my zinc too rapidly because the then copper will be increased as well.
    After this period I am supposed to start taking zinc tablets.
    Also she told me to take 10 000 Vitamin D3 and I remember all our discussions on our forum about D3. I am scared to take so much. my D3 level is about 70 now. She said it is better to reach the top range.
    Here we can discuss and filter our doctors’ decisions on this forum Please let me know what you think.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, LDN, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

    #459874
    lynnie_sydney
    Participant

    She told me to eat two tablespoons of pumpkin and sunflower seeds every day for three months and said that it is not good to increase my zinc too rapidly because the then copper will be increased as well.

    No think that’s probably a misunderstanding or mis-hearing. Too much zinc cannot cause an increase in copper, but taking too much too soon may cause too much decrease in copper so that you end up depleted in copper. It’s probably wise to gradually increase your zinc. BTW another really good non-meat food source of zinc is romaine lettuces – of which cos lettuce is a member.

    There is so much debate about the D issue and very opposing views that you are unlikely to get a consensus opinion on that.

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    abx from Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg. Topical bio-identical estradiol, DHEA +

    #459875
    lynnie_sydney
    Participant

    I have to stay on the same diet for another three months or maybe forever /tests were made 1.5 month into the diet and results don’t show improvement

    Meant to ask what improvements she is looking for with this diet? Did you talk to her about the 8kg weight loss and has she suggested anything that might help you regain some of that weight?

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    abx from Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg. Topical bio-identical estradiol, DHEA +

    #459883
    Maz
    Keymaster

    My new results for thyroid are:
    S TSH 1.17 /norm 0.5-5.5/
    S TgAb 2625 /<115/
    S TPOAb 600 /<35/
    Hips of tests negative /good/, coeliac d. unlikely
    CRP 74 /down from 120, 80/, ESR 59 /down form 68/
    S IgE 951 /<100/
    ANA Titre Patern 1:640 Homogeneaus
    Zinc too low, copper too high /is it because I colour my hair?/
    C pneum low postive
    EBV IgG detected, EBV IgM negative
    S Caerulopla 0.43 /norm 0.18-0.36 G/L/

    That test was made when I was three weeks on a strict diet. Should I worry about thyroid results?

    Hi Linda,

    I’m guessing by now that your doctor has officially provided you with a thyroid diagnosis? With such elevated thyroid autoantibodies and hypothyroidism, I’m also guessing it’s Hashimoto’s? While your TSH is in a good range, you’d still need the Free T3 and Free T4 to know how well you’re converting T4 to T3, because your inflammation levels are pretty high and presumably blocking proper conversion. In this scenario, TSH can look fine, but if T3 is low (ideally in upper quartile of range) then this can increase pain levels in muscles and joints.

    Nutrient absorption goes haywire with thyroid issues….if someone is hyper, they don’t absorb enough, because of swift gut transit and, if hypo, malabsorption is common due to slowed gut function, microbial overgrowths and leaky gut. Good bacteria are needed in the gut for proper nutrient absorption, but everything goes out of whack when some bacterial colonies overgrow and inhibit others.

    There is a really great thyroid advocate, Dr. Izabella Wentz, the Thyroid Pharmacist, who has a website where she blogs about every topic under the sun for Hashimoto’s, which she was able to reverse for herself with diet and supplements. I just listened to her in a Lyme conference talking about the infectious causes of thyroid disease, too, which was very interesting, and the ability of some microbes to cause molecular mimicry in the body – where the body senses the foreign proteins of a bug and starts attacking them, but these proteins also look like certain body tissues, like the thyroid. Gluten can also do this, so is helpful to remove from the diet. Thyroid disease is so common as an autoimmune overlap with rheumatic disease, so it’s really critical to be sure to get the thyroid in good enough shape to help rheumatic symptoms. This blog by Dr. Wentz describes the autoantibody test results you just received:

    https://thyroidpharmacist.com/articles/hashimotos-and-tpo-antibodies/

    Hopefully your doc will help you sort out the copper overload, which can be the result of an inherited condition, or just environmental. Either way, copper overload is toxic to the body and its organs, so needs treatment. Sometimes chelation will also be used in advanced cases.

    Has your doc recommended a thyroid ultrasound yet?

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #459903
    Linda L
    Participant

    Yes, the doctor is aware about my weight loss. I asked how I can eat veggies, fruit and legumes all the time and she said to try the different herbs so it tastes different. Maybe it is what she meant about zinc and copper, but in your article they say you cannot overdose zinc.
    She confirmed Hashimoto. She didn’t mention a thyroid ultrasound. I will ask for T3 and T4 next time.
    It is strange that after taking Oroxine 75/100 mg for 4.5 months TSH was 3.46 and after another 2.5 months taking the same dosage it is 1.17.
    Thank you Lynnie and Maz. Your help is much appreciated.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, LDN, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

    #459907
    Maz
    Keymaster

    She confirmed Hashimoto. She didn’t mention a thyroid ultrasound. I will ask for T3 and T4 next time.
    It is strange that after taking Oroxine 75/100 mg for 4.5 months TSH was 3.46 and after another 2.5 months taking the same dosage it is 1.17.

    Hi Linda,

    With Hashimoto’s thyroid nodules are pretty common and, depending on nodule size and how they appear on ultrasound imaging, sometimes biopsies are recommended. Most of the time they are just non-functioning blobs of tissue that have developed as a result of the errant immune attack on the thyroid tissue, but can waver between hyper and hypo for a while until the nodules burn out completely.

    When a person has wavering systemic inflammation, thyroid labs will continuously wobble, by default. It is a feedback loop with the pituitary gland and, if the thyroid sends the message to the pituitary that it needs less hormone, then less thyroid stimulating hormone will be sent to the thyroid to stimulate it to produce more (and vice-versa). So, with Hashimoto’s wavering up and down until the functioning nodules burn out, so will requirements for exogenous thyroid hormone supplementation. So, it’s just one if those thyroid diseases that requires constant monitoring, complicated by inflammation status.

    The elimination diet you are on may help reduce the attacks on your thyroid, and therefore your exogenous thyroid supplementation needs may be reduced, too, but it takes time and patience to see any results with diet. Gut healing is essential to ensure nutrient absorption (e.g. Zinc) with Hashi’s, which most holistic and functional docs believe is due to infections (causing dysbiosis and gut inflammation), leading to leaky gut, and thus, autoimmunity in those genetically-predisposed (via molecular mimicry) due to foreign protein leakage.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #459913
    Linda L
    Participant

    Thank you very much Maz. Now I know more what to expect. The more you get into it, the more complicated it becomes.
    I am quite upset today. After three months of a very strict diet I had allergy tests for food and other possible allergen, for celiac disease.
    It is written “celiac disease extremely unlikely”. I contacted the laboratory this morning and asked if I can make those tests after being three months on a diet. They said I cannot and at least eight weeks I should be eating everything before these tests are done. So why all that effort?

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, LDN, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

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