Home Forums General Discussion Bye bye minocyclene…I will miss you.

This topic contains 11 replies, has 3 voices, and was last updated by  lynnie_sydney 9 months ago.

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  • #458229
    Spiffy1
    Participant

    Update….Walmart gave me PAR instead of Ranbaxy…broke out in rash
    Could not get Ranbaxy
    Gave me Torrent capsules…breaking out in rash tonight

    I have three choices
    1. Stay off antibiotics and check RA factor in a month.
    2. Try to find Ranbaxy at local pharmacy…made by Sun and distributed by Torrent.
    3. Get my compounding pharmacist that makes my LDN to make me some minocyclene capsules with only cellulose hypoallergenic.

    I will be scared to death to try minocyclene again. I am trying not to think of anaphylaxis during this snowstorm. But if I never try it again, how will I ever know if it is the minocyclene or the fillers?

    Let me end by saying that Ranbaxy may or may not have helped me these 2 years as far as RA goes. There is no way to separate what was diet, methyl vitamins, or minocyclene. But Ranbaxy never caused me any problems. I will say it seems to be very slow working. My RA factor was 71 at the start. It got down to 28 this past September and is back up to 37. I knew it would go up because I had a decent flare mostly in my hips a month or so ago. Basically it looked like on record that my factor was falling a little over a point a month until it went up. Very slow. I read other people can watch their’s fall by 100’s or 10’s in a month. Oh, well. It gave me security if nothing else. I am about to enter unchartered territory. Any ideas?

    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
    RA Factor 71 in Jan 2015 down to 28 as of September 2016
    DR4/DQ8 HLA...biotoxin illness
    IGG food allergy to wheat, egg, and dairy...probably all grains
    Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
    MTHFR compound heterozygous
    Igenex IGM positive Lyme, minoMWF

    #458230
    Spiffy1
    Participant

    I might should add that I tested slightly positive at 1:40 to the ANA homogeneous pattern which is very slight…not enough to worry about, but with all the other stuff going on I thought I needed to throw that in. That is the pattern of drug induced lupus.

    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
    RA Factor 71 in Jan 2015 down to 28 as of September 2016
    DR4/DQ8 HLA...biotoxin illness
    IGG food allergy to wheat, egg, and dairy...probably all grains
    Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
    MTHFR compound heterozygous
    Igenex IGM positive Lyme, minoMWF

    #458231
    PhilC
    Participant

    What do those Torrent capsules look like, and what is written on them?

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #458234
    Spiffy1
    Participant

    Thanks, Phil. The capsules appear to be small gray on one side and white on the other with the identification of RX696. I sure wish I knew what these fillers were as compared to PAR. Any ideas are so appreciated.

    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
    RA Factor 71 in Jan 2015 down to 28 as of September 2016
    DR4/DQ8 HLA...biotoxin illness
    IGG food allergy to wheat, egg, and dairy...probably all grains
    Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
    MTHFR compound heterozygous
    Igenex IGM positive Lyme, minoMWF

    #458237
    PhilC
    Participant

    Here’s a list of the inactive ingredients:

    GELATIN (UNII: 2G86QN327L)
    TITANIUM DIOXIDE (UNII: 15FIX9V2JP)
    PROPYLENE GLYCOL (UNII: 6DC9Q167V3)
    SHELLAC (UNII: 46N107B71O)
    POTASSIUM HYDROXIDE (UNII: WZH3C48M4T)
    STARCH, CORN (UNII: O8232NY3SJ)
    FERROSOFERRIC OXIDE (UNII: XM0M87F357)
    MAGNESIUM STEARATE (UNII: 70097M6I30)

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #458238
    Spiffy1
    Participant

    I owe you big! Thank you! I will compare those fillers to the ones in PAR and Ranbaxy. I decided this morning my only course of action is to have my compounding pharmacist make me some cellulose only capsules and let me take those for a day or two to make sure there is no reaction to plain cellulose. Then have her make me a few 25 milligrams or 50 to take and do lots of praying. Dr. W. Agrees this is the best plan. If it works I will go back to 100. After awhile I might try Ranbaxy again so insurance can cover it. I cannot tell you much I appreciate your help!

    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
    RA Factor 71 in Jan 2015 down to 28 as of September 2016
    DR4/DQ8 HLA...biotoxin illness
    IGG food allergy to wheat, egg, and dairy...probably all grains
    Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
    MTHFR compound heterozygous
    Igenex IGM positive Lyme, minoMWF

    #458241
    lynnie_sydney
    Keymaster

    Spiffy wrote:

    I might should add that I tested slightly positive at 1:40 to the ANA homogeneous pattern which is very slight

    Spiffy, thought I’d just let you know that the whole time I was taking minocycline (around 5 years) my ANA was always slightly positive – between 1:40 and 1:160 and it varied between homogenous, speckled and mixed. It never presented me with any issues other than the test results – and it normalised after I stopped taking mino

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2007 100mg MWF - can no longer tolerate mino/doxy
    abx: MWF a.m. Augmentin Duo (1/2 x 875mg) + 250mg Klacid p.m. Cefaclor (1/4 x 375mg) + 250mg Zithromax. 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 caps + Progesterone caps

    #458243
    Spiffy1
    Participant

    Yes, I did not come unglued when I saw it. i had remembered your history. This is why roadback is so helpful. We learn from other people’s experiences and do not have to walk in the dark alone. Bless you.

    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
    RA Factor 71 in Jan 2015 down to 28 as of September 2016
    DR4/DQ8 HLA...biotoxin illness
    IGG food allergy to wheat, egg, and dairy...probably all grains
    Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
    MTHFR compound heterozygous
    Igenex IGM positive Lyme, minoMWF

    #458244
    Spiffy1
    Participant

    Why did you have to get off mino after 5 years?

    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
    RA Factor 71 in Jan 2015 down to 28 as of September 2016
    DR4/DQ8 HLA...biotoxin illness
    IGG food allergy to wheat, egg, and dairy...probably all grains
    Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
    MTHFR compound heterozygous
    Igenex IGM positive Lyme, minoMWF

    #458246
    lynnie_sydney
    Keymaster

    Initially because a new AP Doc wanted me on a different regime. However, I did eventually develop hypersensitivity to it and to doxy

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2007 100mg MWF - can no longer tolerate mino/doxy
    abx: MWF a.m. Augmentin Duo (1/2 x 875mg) + 250mg Klacid p.m. Cefaclor (1/4 x 375mg) + 250mg Zithromax. 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 caps + Progesterone caps

    #458250
    Spiffy1
    Participant

    How did you know you were hypersensitive? Was it rashes?

    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
    RA Factor 71 in Jan 2015 down to 28 as of September 2016
    DR4/DQ8 HLA...biotoxin illness
    IGG food allergy to wheat, egg, and dairy...probably all grains
    Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
    MTHFR compound heterozygous
    Igenex IGM positive Lyme, minoMWF

    #458272
    lynnie_sydney
    Keymaster

    No rashes, I’d get severe joint pains and feel flu-ey within an hour of taking a very small amount of mino or doxy. That’s far too quick and dramatic to be a herx and was different from anything I’d experienced before. I did get tested (VEGA machine) and the needle jumped almost off the machine, indicating development of allergy/hyper-sensitivity. Didn’t get to the serum testing that Maz went through as that is very difficult to get here and this was enough for me. I’d had an acute liver crisis a few months prior so was not going to risk anything.

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2007 100mg MWF - can no longer tolerate mino/doxy
    abx: MWF a.m. Augmentin Duo (1/2 x 875mg) + 250mg Klacid p.m. Cefaclor (1/4 x 375mg) + 250mg Zithromax. 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 caps + Progesterone caps

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