Home Forums General Discussion Herxing while not on abx!

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  • #362708
    lynnie_sydney
    Participant

    (I can’t tolerate the contraceptive pill unfortunately – too allergic probably).

    Ruth – have you considered/tried bio-identical hormones by any chance? The body responds differently to those. Just a thought.

    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)

    #362709
    spacehoppa
    Participant

    Hi Lynnie, Yes, I have tried bio-identicals. I had the same problems unfortunately. Apparently, I am allergic to my own oestrogen as well as the synthetic stuff! 🙄

    Thanks for the suggestion though. It seems my hormones really are a big part of my problem. (I am quietly hoping that the menopause will bring some relief from the vicious cycling, but it could be that the lowered levels of hormones will just make me worse?!)

    #362710
    lynnie_sydney
    Participant

    Let’s hope not Ruth!

    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)

    #362711
    PhilC
    Participant

    Hi Ruth,
    @spacehoppa wrote:

    It’s interesting because what’s been happening to me lately wasn’t a flare, that is, my joints didn’t worsen, but I did herx, that is, the neurological twitching symptoms, nausea and fatigue came to the fore.

    That sounds very much like secondary porphyria.
    See: Secondary Porphyria: what you should know before starting a CAP

    What’s also interesting is it appears that oestrogen can make porphyria worse.
    See: http://www.cpnhelp.org/secondary_porphyria_vs_ge

    Phil

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

    #362712
    spacehoppa
    Participant

    Hi Phil,

    Thanks for the suggestion! My Lyme doctor may well agree with you about the porphyria, as the first thing she prescribed me was a whole bunch of B vitamins. I mean a whole butt load! 😆

    I take something called homocysteine factors (B vitamins), something called P5P50 (also B vitamins) an activated B6 complex and folic acid, all as separate supplements! Needless to say my health has improved dramatically.

    As it turns out, my ‘herx’ was probably an allergic response to the vaccines. It has stopped now. My osteopath mentioned that reactions to vaccines usually happen around 10-14 days after the injection, (which of course I know through my sons’ experience of having vaccinations) and this was between days 10 and 14 of taking the new vaccines.

    I’m actually feeling pretty good the past week or so, perhaps because of where I am in my hormonal cycle, but I am also hopeful that the vaccines may be calming my immune system. Just to reiterate, I was scratch tested for various things, but surprisingly the things I am most allergic to are oestrogen, histamine, areobic and anaerobic bacteria (and fish). So, I am basically most allergic to the things inside my own body, not the outside world. Fortunately, the vaccines really seem to work, as the foods that previously gave me cramping diarrhea, no longer cause me any problems. And my hormonally caused headaches are less frequent and much less severe. I am starting to believe that this might be a huge piece of my puzzle!

    Thanks for all the support everyone!

    #362714
    Valsmum
    Participant

    Hi Spacehoppa,

    How do you tell the difference between a herx and a flare? Also how many years were you on steroids to get adrenal insuficiency? What tests do they give you to find out if your adrenal glands are working properly. I am at 6-7 mg prdenisone too and weaning 1 mg a month. My sed rate is finally normal .

    I hope you feel batter.
    Take care.

    #362713
    spacehoppa
    Participant

    Hi Valsmum,

    The difference between a herx and a flare for me is quite obvious, although in the beginning it wasn’t as my inflammation levels were so high that it all munged into one!

    Herx: Nausea, fevers and chills, headache, crushing fatigue, twitching, feeling of increased pressure in my head, buzzing/tingling sensation in limbs, sore throat, anxiety, unusual heart rhythym and when it’s bad, an inability to speak or open my eyes.

    Flare: Worsening of arthritis symptoms, generalised all over pain like when you have flu, mild feverishness, fatigue, some hot and obviously swollen joints, inability to tolerate stress.

    I’ve been on prednisolone continuously for 7 years now, but I feel like I’ve been adrenally suppressed for at least the past 3 years, maybe longer. I’ve never been given an adrenal gland test, but it’s pretty obvious that when I go below 7mg/day I go into a bad flare and get a kind of nervous exhaustion where I basically wind up shaking and crying a lot. Resting and sleep (assuming I could get it with two small children 😆 ) doesn’t help much when I’m in this state, and by the time the arthritis starts to worsen I get in a terrible state very quickly.

    Glad your ESR is normal! Just take it steady dropping the pred. It’s beyond hard, I know. If you’ve only been taking the pred at night you’ll be more likely to be able to wean off it than me. I take it morning and night unfortunately, which does nothing for my adrenal gland.

    #362715
    Valsmum
    Participant

    Thank you for your reply. I too take prednisone in the morning -5mg and then 2mg around 1pm. I know what you mean about the exhaustion. I was trying to taper withthe 1mg and cut them in 1/4ths, so I could taper each week by 1/4 but it seems like it really does not work too well that for me. My friend that cam off of pred, said the best for her is 2days of the same dose then one day of the higher dose.7mg,7mg,6mg,7mg,6mg,6mg,7mg-I feelbetter too when I go up and down like this.
    It is not sucha jolt and since she came off I listen to her advice.

    I cannot believe your herx reactions, that is awful. I felt like I was going to end up hospitalized if I continued taking abx, I must fall into the 15%, but I still beilieve it whole heartedly works for rheumatics/arthritics, it just came to a point after a YEAR of labs going from bad to worse, that I just do the no starch diet or paleo diet, then after being on the diet my labs went from a sed rate of 54 to now in normal range. I hope it stays that way. I was on pred the whole time so that does not make my labs better, I was actually at 10mg when my labs were worse. Its so weird how different things affect all of us, I wish I could eat whatevr I wanted. Grains do me the most damage they hurt me so badly, it’s like poison when I eat them, my pain is hard and last for days.now I’m just rambling. I hope your herxing goes away. Some of my friends swear by fasting from dinner to dinner and it gets them relief, from some of their symptoms. I don’t know if it would help your herx, but it was just a thought. Also a dr in France had REALLY good results(like 100% releif) with a lot of his patients they had MS, RA, AS , Fibro. His name is Dr. Seignalet his diet is for people like us. Hope you feel better soon!

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