Home Forums General Discussion Average duration of herx?

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  • #307078
    niteowl
    Participant

    What is the longest amount of time any of you have endured Herx symptoms? I am taking 100mg Minocycline BID for RA.

    Diagnosed with RA in 2012
    Fifth Disease in '03
    Lyme? in 2000?
    Had radioactive ablation of hyperactive thyroid in 1997
    autoimmune thrombocytopenia resolved
    Anemia resolved with treatment of RA with Minocycline
    Blood type: B neg

    Meds:
    Minocycline 50mg once a week
    Levothyroxine .88mg
    Liothyronine 5mg
    Methotrexate 20 mg once a week

    Folic acid
    B12
    B6
    Vit D
    Biotin
    Biosil
    Cbd balm
    Flexaril as needed
    Aspirin
    Benedryl
    Ventolin inhaler
    Lactibiane probiotic

    #365578
    Maz
    Keymaster

    @niteowl wrote:

    What is the longest amount of time any of you have endured Herx symptoms? I am taking 100mg Minocycline BID for RA.

    Hi Niteowl,

    Nice to meet you! Any chance you can share your any other pertinent info (e.g. meds, supps, date of dx, etc). To help…you can add these to your signature line, so that they will pop up each time you post so you don’t need to repeat the info. Just go to your User Control Panel at the top of this page, click on this, then click on the “Profile tab,” and then “edit signature.” Once you’ve typed in all the info you want, just click the submit button and it will show up every time you post. It’s also easy to edit your signature in the same way any time you wish. πŸ™‚

    When did you start your AP, Niteowl? How long have you had RA? Would you describe your RA as mild, moderate or severe?

    Generally speaking, Brown would always start RAers with a lot of inflammation off on a really low, pulsed starting dose, such as 50mg or 100mg on just a Mon, Wed, and Fri or sometimes just twice a week (see end of video at top of forum). This is because RAers usually will experience the “herx” response, which is a release of toxins from dying organisms, as the immune system goes in for the kill. Tetras are bacteriostatic and don’t kill bugs outright (except in higher doses when they do have some bacteriocidal effects, as well)…they just disable bugs and the immune system does the killing and clearing of debris.

    When there is too much die-off, the body responds with inflammation and a worsening of existing and new symptoms. Over time, if the herx response is too great, this can produce hypersensivity, where the antigen (bug toxins) become bound with the body’s fighting mechanism – antibodies. These bound immune complexes keep antibodies from being able to do much good and they just float around in the body producing malaise.

    When I began abx therapy for Lyme disease that had triggered my RA, my LLMD put me on high doses of abx for a year. This produced heavy herxing for 3 months. While it pushed me ahead of the game in regards to bug-killing, it also produced excessive tissue hypersensitivity. When I then went on lower AP doses, as per Brown, in my second year, I gained ground very fast and within 10 months had reached remission in labs and symptoms. Unfortunately, I then developed drug-induced lupus and so got side-tracked for a while with my treatments. Just sharing to explain that too much die-off can be counter-productive…high doses might be killing bugs, but also creates a huge “bacterial allergy” reaction. If you get a chance to read Henry’s Scammells’ book, The New Arthritis Breakthrough, Dr. Brown explains how all this occurs.

    If you’re working with an experienced AP doc, then asking if you can lower your dose may make your herxing more tolerable. If you’re doing okay with your herxing and can tolerate it, then the dose you’re on should be okay.

    As for duration of herxing, a lot depends on disease severity and degree of inflammation, how entrenched the disease has become, strength of immune function, the body’s ability to detox, as well as the different types of bugs one has in one’s pathogen mix, etc. Everyone seems to be unique in this regard, with some folks experiencing no herx of any significance, a short-lived herx of just a few hours or days, or some folk will experience herxing for months and in rounds.

    Learning how to detox can really help with reducing circulating antigen and reduce the duration and severity of herxing.

    Hope something here is of help to you, Niteowl, and hope you get past this early phase soon. πŸ™‚

    #365579
    niteowl
    Participant

    Hi Maz!

    Thanks for the 411. Did as you advised /control/signature!

    My Rheumy is prescribing AP as I requested. He was involved with a study at Henry Ford Hospital in the 90’s. He only wants to do the AP for 3 months because he thinks I have had RA for a long time and that AP is only effective in the early stages,(so when AP doesn’t work he can switch me to MTX). I have a chronic Platelet and HGB issue. So I had no TX from my ‘official DX in June of this year as I had to get clearance from Hematologist. No one has said whether to continue taking Iron supp. and I have been taking Iron for the last 5 years( HGB was 8.0, last one was 12.0. I just can’t stomach it right now. I can only tolerate Naproxen every 2-3 days. I was not tested for Mycoplasms and I was starting to have swelling in my right wrist and finger so I was anxious to get Tx started!

    I started having difficulty with my feet in May 2011 but was DX with Metatarsalgia by an inept Podiatrist. It wasn’t until this year that my new Podiatrist referred me to a Rheumy.

    I have been doing Vinyasa Yoga on a very padded mat! I just Got my copy of the book and am reading it now.
    BTW, I had Fifth disease in 2001 and I thought I might have had Lyme Disease back in ’99.
    I may try adjusting dose if this doesn’t get better soon. At least the Vertigo has pretty much ceased!

    It’s a good thing I don’t have to stand for 12 hours anymore.

    Diagnosed with RA in 2012
    Fifth Disease in '03
    Lyme? in 2000?
    Had radioactive ablation of hyperactive thyroid in 1997
    autoimmune thrombocytopenia resolved
    Anemia resolved with treatment of RA with Minocycline
    Blood type: B neg

    Meds:
    Minocycline 50mg once a week
    Levothyroxine .88mg
    Liothyronine 5mg
    Methotrexate 20 mg once a week

    Folic acid
    B12
    B6
    Vit D
    Biotin
    Biosil
    Cbd balm
    Flexaril as needed
    Aspirin
    Benedryl
    Ventolin inhaler
    Lactibiane probiotic

    #365581
    niteowl
    Participant

    Update:
    Had to go to the ER for severe muscle spasms Oct 29. Given Toradol IM Decadron, xrays show degenerative changes. No news there. Also got Rx for Soma and Vicodin 325. I have been taking these at nite so I can rest without my body interupting my sleep. Still having “Herx” sx. Unable to do Yoga as everytime I exercise, 24 hrs later I get severe spasms. My right foot is numb and other neuropathy sx like burning sensation along perimeter of both feet. I backed off the Minocycline to Three times a week after abstaining for a week. My hands are useless to open doors let alone chop veggies for Alkaline diet/ detox. My husband was able to help make the Lemon/ olive oil/ orange juice detox cocktail. I was able to drink it the first day but could not get it down the next day. I’m drinking lots of water and tea (chai).
    So anyway this has settled into my left jaw, both hands and wrists, Rt shoulder, Rt hip, both knees, and both feet(origin of all of this). Feeling pretty useless right now.

    Since I don’t have an AP purist Doc, I’m thinking that I should decrease dose again to 50 mg BID / 3x week.
    My biggest problem is that I can’t cook with useless hands and I would like to be on an Alkaline or veggetarian diet. How do all of you cope? Any thoughts or suggestions would be appreciated.

    Diagnosed with RA in 2012
    Fifth Disease in '03
    Lyme? in 2000?
    Had radioactive ablation of hyperactive thyroid in 1997
    autoimmune thrombocytopenia resolved
    Anemia resolved with treatment of RA with Minocycline
    Blood type: B neg

    Meds:
    Minocycline 50mg once a week
    Levothyroxine .88mg
    Liothyronine 5mg
    Methotrexate 20 mg once a week

    Folic acid
    B12
    B6
    Vit D
    Biotin
    Biosil
    Cbd balm
    Flexaril as needed
    Aspirin
    Benedryl
    Ventolin inhaler
    Lactibiane probiotic

    #365582
    lynnie_sydney
    Participant

    niteowl – think you are probably on the right track. Rheumies (generally) dont understand/subscribe to the low and slow approach (because they generally do not believe in infectious origin/trigger) and their perspective on mino is that it is a mild DMARD. They tend to rx ‘with all guns blazing’ on a daily basis not understanding the potential herx response. Then when patient begins to get a very big herx response and lots of inflammation caused by cell die off, they tend to assume the disease is worsening and take the patient off this treatment because ‘it’s obviously not working’. This sounds like your rheumy, given that he only wants you to try it for 3 months….which those that subscribe to infectious origin believe to be far too early for any meaningful changes to have occurred. Sounds like you are already mindful of this and are prepared to be your own health care CEO (always best to keep your doc informed of your choices, however! πŸ˜€ πŸ˜€ ). Too much inflammation is counter-productive because it stops the ab from reaching its target AND you need to be able to function through all this. As one of our long-term members used to say, ‘the idea is to kill pathogens NOT the patient!’

    You might consider having a week’s washout before starting at a much lower dose on one or two days a week.

    If you have been taking NSAIDS in any quantity over the past few years, you may also have Leaky Gut. I’d also consider cutting out gluten, dairy and as much salicylate as possible and look at healing the gut at the same time. I am pasting a link below to a really good fact sheet on salicylates

    http://fedup.com.au/factsheets/additive-and-natural-chemical-factsheets/salicylates

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #365583
    laurawm
    Participant

    Hi Niteowl,

    I am in a similar herx position currently taking 50mg mino MWF and plaquenil 100mg QOD + supplements. I manage psychologically by believing it will get better eventually and physically I rely heavily on my husband, plus I simply do a lot less right now. Cooking – I buy precut organic veggies or veggies I can simply steam and then more easily cut once lightly cooked. Fruit, I get my husband help but also I just butcher things highly ungracefully. πŸ™‚ I also just bought a juicer and was using a food processor for chopping till it died on me. I’m still figuring it out, but over time I am finding simple meals I can prepare that are low starch, high veggie/protein. I also order Thai a lot.

    I hope you feel better soon. I have some days that are better than others. I’ve had a hard year and the most helpful thing outside this forum has been recently finding a doctor who 100% believes in this treatment and is working with me and encouraging me. I tried on my own working with three doctors who didn’t really believe in ABX treatment by just taking mino or doxy which they gave into prescribing me, but psychologically it was a constant battle to not get discouraged with their negative view of how I saw the disease. As Lynnie said, doctors who do not believe in an infectious/bacterial allergy origin of the disease see herxing as worsening of the disease, so of course they want to tell you to go with immunosuppressants.

    I take dead sea salt baths every night, ingest sea minerals as well as magnesium supplements and am working on getting an infrared sauna – all these help with detox.

    Best wishes,
    Laura

    #365580
    niteowl
    Participant

    Thank you Lynnie and Laura. That is certainly interesting about Salicylates. And I need to finesse my Detox regimen so I can get back to my painting. I just need to coordinate cooking and ask for help with some of the preparation. Ideally I could find a vegetarian cook to work for me πŸ˜‰

    Diagnosed with RA in 2012
    Fifth Disease in '03
    Lyme? in 2000?
    Had radioactive ablation of hyperactive thyroid in 1997
    autoimmune thrombocytopenia resolved
    Anemia resolved with treatment of RA with Minocycline
    Blood type: B neg

    Meds:
    Minocycline 50mg once a week
    Levothyroxine .88mg
    Liothyronine 5mg
    Methotrexate 20 mg once a week

    Folic acid
    B12
    B6
    Vit D
    Biotin
    Biosil
    Cbd balm
    Flexaril as needed
    Aspirin
    Benedryl
    Ventolin inhaler
    Lactibiane probiotic

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