Home Forums General Discussion trying a high dose

This topic contains 23 replies, has 9 voices, and was last updated by  Spiffy 2 years, 1 month ago.

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  • #308832
    emmaline
    Participant

    I started at 100mg Mino MWF for four months. I have seen improvement, but not a great deal. I remembered the man I talked to on the phone who told me about his wife’s experience. She took 1600mg per week and was in remission in 8 months and has been well for 4 years now. I realize this is way too high a dose for most people. He had stressed how important it is to find the right dose for you.
    For the past week I have been taking 200mg twice a day MWF. I have bad swelling and pain in my hands and feet, but my knees and ankles, elbows and shoulders are better. I am on 10mg Prednisone and cannot go down at this point. I’m wondering if the amount of Prednisone is why I can take a higher dose of Mino? I’m also wondering how long a Herx usually lasts? I feel nauseas and tired, but so far I feel like I can manage. I’m wondering if I can just get through the Herx and make it “to the other side”.
    Again, I realize this is a very high dose. Please don’t beat me up for wanting to try it… I know this is NOT for everybody. Any constructive advice or considerate opinions would be appreciated. Thank you Road Backers.

    #375489
    jasregadoo
    Moderator

    I can’t speak to your high dose or the implications/dangers involved. But I’ll be interested to follow your progress and know how you’re doing.

    I’m currently in the process of increasing my dose from 100mg MWF to 100mg bid. Thus far I’m at 100mg a day, and I have noticed some improvement from the MWF dosing. Still swollen, still some pain, but less pain. I really do look forward to the day when the swelling goes down and I can wear my rings again.

    #375490
    Lynne G.SD
    Participant

    Hi Emmaline;
    If you look at the work of Dr. Brown ,he did use low dose pred and Benadryl for herxing.WallMart has an Equate brand that is not expensive and that is what got me through some really bad herxes. The goal is to get off the pred but ever so slowly.

    #375491
    emmaline
    Participant

    Thank you Jasregadoo & Lynn. I know my next goal is to get the Prednisone down… slowly. Dr. Brown’s book talked about a woman who was on 50mg Prednisone and could hardly get down to 49 without feeling it, and Dr. Brown was able to help her through higher dose antibiotics and herxing. She did receive intraveneous Clarithromycin, which I don’t know how to get from any doctor. I do not have a family history of RA and my rheumatoid factor is negative, but I have had pneumonia, mononucleosis or Epstein-Bar, Chlymydia, Strep, Group B Strep. I truly believe in the infection theory and the Antibiotic Protocol.

    #375492
    richie
    Participant

    Hi Have you considered 200 mg daily —might be better spacing –
    richie

    #375493
    emmaline
    Participant

    Hi Richie,
    I thought RA patients needed to pulse dose and Scleroderma patients needed to do every day. Can you explain?
    Thanks,
    emmaline

    #375494
    richie
    Participant

    Hi Not really -its a matter of choice –the MIRA studies for RA called for daily dosing -that is the newer study –the pulse method actually called for ivs first -then pulse dose —I posted because 400 mg daily is a pretty high dose for minocycline –I couldnt find where it is recommended for anything at this level —
    Richie

    #375495
    emmaline
    Participant

    I couldn’t either. I just looked back at the notes I took on the phone with a man who said it’s what they did for his wife. Is it dangerous?

    #375496
    richie
    Participant

    Hi From what I see the max dose is 200 mg daily –when taking minocycline long term –The liver enzymes and kidney numbers should be checked –I check mine every 6 months –kidney is BUN and Creatinine —I just think 200 mg daily every day makes more sense than 400 mg three times a week —I am not a doctor but I personally wouldnt do it –Good luck
    richie

    #375497
    Jeanies Girl
    Participant

    Emmaline,

    I thought I would pass on the information that my doctor’s office gave to me. I asked what she recommended to help with detoxing while we were going through the AP. She recommended Milk Thistle to detoxify the liver.

    Best of luck to you.

    DX: Bacterial (mycoplasm) infection
    AP: Began June 2015
    Clindomycin IV 900 mg-every 3 months for 5 days
    Minocycline 100 mg MWF am and pm
    Flagyl 500 mg 2 x day for 3 days in a row every month
    Symptoms: Since approximately 1997-Extreme fatigue, (Intermittent: muscle weakness, stiffness, brain fog, lack of stamina)
    Supplements: Vit. C 3000 mg, Vitamin D 5000 IU every other day and 10,000 on remaining days, Vitamin B complex, Fish Oil 1000 mg 2 x day

    #375498
    PhilC
    Participant

    Hi,
    @emmaline wrote:

    For the past week I have been taking 200mg twice a day MWF. I have bad swelling and pain in my hands and feet, but my knees and ankles, elbows and shoulders are better.

    I can almost guarantee that what you are doing is more difficult than taking 100 mg twice a day, every day. Pulsing a high dose like you are doing will tend to make your die-off reactions worse, and you lose a lot of the anti-inflammatory effect that you would get from taking minocycline every day.

    Phil

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

    #375499
    emmaline
    Participant

    I have heard of the Milk Thistle, too. Thanks, Jeanie’s Girl.

    The Jarisch Herxheimer is a bit too much, so I’m doing a wash out and starting at 200mg MWF next week. I understand that if the Herx is too bad you can go into shock. Yikes! I’ll slow down a bit then build back up, hopefully to 300mg MWF in a few months. I may try just taking an extra 100mg on a Saturday, too. Dr. Brown said the highest dose he used was 500mg MWF and pulsing is preferred for R.A. I’m not going to take that high a dose, though. He monitored those patients carefully.
    Thanks, Richie. I do understand your point and appreciate your input. I will talk to my doctor and get my kidney and liver #s checked.
    Blessings,
    Emmaline

    #375500
    lynnie_sydney
    Keymaster

    Dr. Brown said the highest dose he used was 500mg MWF and pulsing is preferred for R.A. I’m not going to take that high a dose, though. He monitored those patients carefully.

    Emmaline – I think Dr Brown would have been referring to Tetracycline. So 250mg of tetracycline is equivalent to 100mg 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

    #375501
    Spiffy
    Participant

    You go,Girl! I am up to 100 mgs. Twice a day Monday, Wednesday, Friday myself. I did not have any negative reactions. I cannot tell a difference. My doc wants to start 200 mgs. Of Plaquenil. I have not, because I am scared. I have read both good and bad things about it. I think he thinks it would help with Lyme and my RA factor. Good luck. Just take lots of vitamin c and probiotics!

    DR4/DQ8 HLA, bio toxin illness
    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
    Positive RA factor was 71 in January 2015 down to 28 as of September 2016
    IGG food allergies wheat, egg, dairy
    supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
    MTHFR compound heterozygous
    Igenex IGM Lyme positive
    Minocycline 100 BID MWF

    #375502
    emmaline
    Participant

    Hi Spiffy! Good to hear from you. I don’t think you should be afraid to raise your dose. I just went through a Herx and felt nausea and bad fatigue, but when you I stopped and did the wash out I felt better in 3 days. The half life is 48 hours. You just can’t let the herx get bad because it could be dangerous… you can go into shock, I guess. I just started 200mg MWF again, and if I herx, I’ll wash out and start again lower. I believe I just need to find the right dose for me.
    The guy I talked to who introduced me to AP had helped his wife with RA. I just called him again and he was really helpful and encouraging. He said because his wife couldn’t get the name brand Minocin, he believes it is important to keep working on figuring out what dose works best for your body; that 100mg Brand Minocin may not be equivalent in the generic so you have to play with the dose. His wife is in complete remission. She built up and was taking 1200mg per week at one point – but not for long. He said 300mg per day MWF was the ticket for her, but she went through some herxing to figure that out.
    My larger joints have been a lot better lately, but the small ones are still painful and swollen. He said once the Mino takes care of all the mycoplasma in the big joints, it will start attacking the small ones and it will get much better. He is some kind of astrophysicist, so he’s really intelligent. He said Mino is like a missile that seeks out the mycoplasma. We talked for like an hour and I gained new vigor for the protocol. Be patient and listen to your body, right?
    He also said you could be at 200mg MWF and sneak another 100mg on a Saturday and see how you feel. It’s good to up your dose really slow, as we’ve been told.
    All that being said, I’m very nervous about the weather getting colder. We can get below zero for weeks at a time up here. Do you feel changes in the weather, too? It’s crazy how bad I can get before a storm. But it is raining right now and NO swelling or pain (except the joints that are now permanently larger… Does it have to do with killing off a bunch and causing the herx? I think there is something to pushing it a little. I thought about doing every day of the week, but the guy said you don’t want to. We’ll see.
    My husband put a steam unit in our shower!!! It’s fantastic and it helps a lot when I’m stiff in the AM.

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