Home Forums General Discussion Dosage & Reiters Syndrome

This topic contains 21 replies, has 7 voices, and was last updated by  Maz 2 weeks, 3 days ago.

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  • #457068
    LifeAboutChange
    Participant

    Hi There,

    This is the 4th time and hopefully last I have developed Reiters Syndrome / AKA ankylosing spondylitis. The previous 2 times I took Doxycycline for 2months together with high dosage of ibiprofen and things begun to get better and I was completely healed by month 3. The first time it took 4months before I had a doctor know what was wrong before I prescribed the right antibiotics at which point I was bid ridden and had dropped 15kg’s of weight. Within 3weeks of taking Doxycycline as well as high dosage of ibiprofen I begun to feel better but it took 12months total to be 100% better and back to the gym as I was at a so advanced stage. Years later when the next few times when my body flared it happened I immediately begun this protocol and things would fix in 2-3months. This 4th time I did the same but it didn’t begin to subside until I begun Chinese Traditional Medicine treatment. I have not been bed ridden on this 4th episode but my energy levels are not what they used to be and I get major mood swings. I look forward to complete remission. Thankful to this forum I found that Minocin is far more effective than Doxycycline and azithromycin in going deeper so I have begun this treatment one week ago after finally (it took many attempts) finding a Doctor that could prescribe to me for RA.

    My two questions are:
    1) Have others had it before, it comes back and you need a different antibiotic to cure? It seems strange that 3 other times worked very efficiently and this time has been a “long road back” to 100% cure. This is my first time every using Minocin as previously the other two worked so I am hopeful I will go into complete remission.

    2) I have not be using the Monday, Wednesday and Friday protocol as I want quicker results so have begun everyday at 100mg for the first week and now increased it to 200mg a day. I have not felt any Herxheimer reaction thus far as likely my symptoms are very mild now. I have additional (thanks to Dr. Mercola articles) begun supplementing with Krill Oil, Astaxantin, Probiotics, Chlorella and Vitamin D3. My question is on this – will one see a quicker result with a more aggressive AP and is there is any issue or problems of being so aggressive?

    Drew

    Reactive Arthritis, since June 2015.
    Current Meds: Been on Minocin 200mg daily since November 2016, now on M/W/F 200mg AP.

    Supplements Daily: 2 caps Krill Oil, 20mg Astaxanthin, 10IU Vitamin D3, 1g NAC, 24mg of boron a day.

    Alternative: Periodic use of home made collodial silver 150ml daily. TCM herbs to target infection, heat and inflammation. Acupuncture to relieve pressure and release heat. 2tbs of organic coconut oil. Oral form of essential oils frankincense and oregano. Topical form of e

    #457069
    LifeAboutChange
    Participant

    I also would like to add – which may help others as well that I was recently tested to be HLA-B27 positive anti gen – which makes me a perfect candidate for ankylosing spondylitis. Others may want to check this anti-gen also which may help find the root cause faster.

    Reactive Arthritis, since June 2015.
    Current Meds: Been on Minocin 200mg daily since November 2016, now on M/W/F 200mg AP.

    Supplements Daily: 2 caps Krill Oil, 20mg Astaxanthin, 10IU Vitamin D3, 1g NAC, 24mg of boron a day.

    Alternative: Periodic use of home made collodial silver 150ml daily. TCM herbs to target infection, heat and inflammation. Acupuncture to relieve pressure and release heat. 2tbs of organic coconut oil. Oral form of essential oils frankincense and oregano. Topical form of e

    #457070
    lynnie_sydney
    Keymaster

    Hi Drew
    Assume then you have seen the site http://www.kickas.org? Good info there. If you have AS, you’ll find info there on dietary must-nots in terms of starches.

    Many people who have gone off doxy or mino when they feel they are in remission find that, if symptoms start up again, they have a much more difficult time getting a result. That’s why a lot of people stay on a maintenance dose even after symptoms have resolved.

    I have not been bed ridden on this 4th episode but my energy levels are not what they used to be and I get major mood swings.

    Just a thought here. At some point you may like to investigate pyroluria. Not very well known in conventional medical circles but well known (and treated) by more integrative and alternative docs (and some psychologists/psychiatrists). It’s a genetic fault in the P450 pathway that results in the depletion of zinc and B6 in the body. Chronic stress/infections can exacerbate the condition. Fatigue and mood swings are 2 symptoms.

    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

    #457072
    PhilC
    Participant

    Hi Drew,

    I have not felt any Herxheimer reaction thus far as likely my symptoms are very mild now.

    For many people the Herxheimer reaction doesn’t hit until the person has been on the treatment for at least two weeks, so don’t be surprised if it happens in the third or fourth week.

    My question is on this – will one see a quicker result with a more aggressive AP and is there is any issue or problems of being so aggressive?

    Yes, you likely will see a faster result, as long as the minocycline is working as it should. With the higher dose you may see some skin darkening or hyperpigmentation. It is purely a cosmetic issue. It is not permanent, and should eventually go away by itself after discontinuing the minocycline.

    Phil

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

    #457083
    worldofme
    Participant

    Do you have AS? How do you keep getting infection back? Where you CHLAMYDIA positive?

    #457084
    LifeAboutChange
    Participant

    Thank you all for the feedback. I will continue on taking the AP at 200mg dosage ED, with diet change and supplementation. I will see how I feel into 4 weeks. I find the biggest underlying factor causing flare ups is stress and anxiety management. I begun yoga, medication as well as become now almost 95% vegan/vegetarian. I have also focussed on getting rid of stressful things and people in my life as well. Have this now the 4th time at a period in my life where stress has been at an all time high with work has certainly made me look deep for answers within and want to make changes that I other wise could not do without the extra push. I look forward very much to things being 100% stable but at the same time it has certainly made some very profound and positive changes in my life, which I am grateful for.

    Reactive Arthritis, since June 2015.
    Current Meds: Been on Minocin 200mg daily since November 2016, now on M/W/F 200mg AP.

    Supplements Daily: 2 caps Krill Oil, 20mg Astaxanthin, 10IU Vitamin D3, 1g NAC, 24mg of boron a day.

    Alternative: Periodic use of home made collodial silver 150ml daily. TCM herbs to target infection, heat and inflammation. Acupuncture to relieve pressure and release heat. 2tbs of organic coconut oil. Oral form of essential oils frankincense and oregano. Topical form of e

    #457089
    PhilC
    Participant

    Hi Drew,

    This is the 4th time and hopefully last I have developed Reiters Syndrome / AKA ankylosing spondylitis.

    When did your symptoms first start?

    Phil

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

    #457090
    LifeAboutChange
    Participant

    They first started (as I knew the feeling quite well) in end of June 2015. It started with warmth and a swelling (no pain at that stage) in my ankles as it has previous times and my thoughts becoming foggy. I immediately began taking the antibiotics as well as ibiprofen as I could not afford to be sick as the time due to work. I felt good about one month later and stopped taking the ibiprofen but then about one week later things started up again and gradually got worse. My energy levels went from exercise 6days a week to not being able to sleep and not much energy to do anything. The swelling and pain become so strong I was on 4-5 double dosage of ibiprofen a day. I would wake up in the morning with my eyes full of water and my head not being able to wake up clearly. At work for many months later it was difficult to concentrate, and work was more stressful and more demanding than anytime before.

    The symptoms did get better over time and when there was no flare up I went off the ibiprofen and I would be often ok for a week and then it would come back strong and last 3-6weeks. Usually the flare ups come from stress or too much exercise or lack of sleep. My anxiety and stress levels though continued to climb until the point I thought I was going crazy and my sleep become worse, so to did the RA. Even though I kind of knew what was happening, after 2 Doctor visits and them refusing to understand what was the cause and only prescribing antibiotics I felt hopeless. I then begun trying TCM with a local TCM Doctor. He prescribed very differently than traditionally doctors and used different terms such as “damp and wind” but the diagnoses was far more fitting to what I knew I had vs. what the other “traditional doctors” told me… especially the part he kept saying the issue is in very deep layers and very small so very difficult for traditional medicine to work. It was not until I came across this site, and then read the book that I learned about the AP as Minocin benefits over others and then had to go to two doctors – pushing the last one a lot to give it a try.

    Reactive Arthritis, since June 2015.
    Current Meds: Been on Minocin 200mg daily since November 2016, now on M/W/F 200mg AP.

    Supplements Daily: 2 caps Krill Oil, 20mg Astaxanthin, 10IU Vitamin D3, 1g NAC, 24mg of boron a day.

    Alternative: Periodic use of home made collodial silver 150ml daily. TCM herbs to target infection, heat and inflammation. Acupuncture to relieve pressure and release heat. 2tbs of organic coconut oil. Oral form of essential oils frankincense and oregano. Topical form of e

    #457109
    PhilC
    Participant

    Hi Drew,

    The reason that you have relapsed multiple times is that you never completely got rid of the infection. If you keep doing things the way you’ve been doing them, the likelihood that it will keep happening is very high. You’ll need to attack the infection more aggressively if you want to be able to eventually stop taking antibiotics.

    Phil

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

    #457112
    LifeAboutChange
    Participant

    Thanks Phil. So how to attack it more aggressively? I am now on 200mg a day. I do feel a lot better since beginning 2 weeks ago already, however in the past this has happened and only comes back 3-4 weeks later with another attack. So yes your advice is correct that I maybe calming things down at times but not fully clear.

    Reactive Arthritis, since June 2015.
    Current Meds: Been on Minocin 200mg daily since November 2016, now on M/W/F 200mg AP.

    Supplements Daily: 2 caps Krill Oil, 20mg Astaxanthin, 10IU Vitamin D3, 1g NAC, 24mg of boron a day.

    Alternative: Periodic use of home made collodial silver 150ml daily. TCM herbs to target infection, heat and inflammation. Acupuncture to relieve pressure and release heat. 2tbs of organic coconut oil. Oral form of essential oils frankincense and oregano. Topical form of e

    #457118
    PhilC
    Participant

    Hi Drew,

    One way to aggressively attack the infection is to use a combination of properly selected antibiotics.

    You can see some examples of such protocols here:
    http://www.cpnhelp.org/treatment_protocols

    I like the Wheldon Protocol. Unfortunately, it most likely wouldn’t work for you as written. However, it may work for you with some small modifications.

    Phil

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

    #457120
    worldofme
    Participant

    Rifampin plus doxy, drew. Your case is well documented by Dr carter.

    #457150
    Wisdom
    Participant

    I have AS disease of which symptons and root causes are different from RA.
    confirm the following symptons ,whether they are present or not in an individual:
    1) Arthritic symptoms in the spine and/or large joints (hips, knees, ankles) for at least three months.
    2) ”Morning muscle stiffness” relieved by exercise.
    3) Presence of HLA-B27 genetic marker.
    4) Elevated level of anti-Klebsiella antibodies during episodes of inflammation.
    5) Radiological evidence of sacro-iliitis.

    ”Classical AS” is said to be present in an individual, who has all the features of condition 1-5 .Who has the features of condition 1-4 but not radiological evidence of sacro-iliitis is ”Early AS”,a strong possibility to develop ”Classical AS” . ”Early AS” is usually not easy to be aware by mainstream doctors.

    Bob

    #457170
    LifeAboutChange
    Participant

    Hi Bob,

    Thanks for your comments. Are you using AP to help recovery? How is your treatment going?

    Reactive Arthritis, since June 2015.
    Current Meds: Been on Minocin 200mg daily since November 2016, now on M/W/F 200mg AP.

    Supplements Daily: 2 caps Krill Oil, 20mg Astaxanthin, 10IU Vitamin D3, 1g NAC, 24mg of boron a day.

    Alternative: Periodic use of home made collodial silver 150ml daily. TCM herbs to target infection, heat and inflammation. Acupuncture to relieve pressure and release heat. 2tbs of organic coconut oil. Oral form of essential oils frankincense and oregano. Topical form of e

    #461113
    bsliu17
    Participant

    Hi Drew,

    any updates for your condition so far? It has a been a year and i’m interested in hearing about your progression

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