Home Forums General Discussion herxing???

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  • #300327
    kramstine
    Participant

    I dont remeber ever feeling this bad. :sick:I have been having flu-like symptoms for 6 days now. I have fever all of the time, wake up at night freezing and shivering or I “sweat like a pig”, My upper back and neck is really sore and I

    #312996
    klogan
    Participant

    Call your doctor!
    You'll need advice and some blood tests to make sure your liver and stuff are not reacting to such a big herx.
    If I'm reading you right, you just started on AP at 200mg of mino – that's a big dose, which can make it really hard. It's aften better to start slow and work up. I realized that the hard way, like you.

    In my case, I had a big reaction (not as bad as yours, but bad) after doubling my dose of mino from 100 to 200.
    My liver reacted badly and I ended up mino-induced lupus. All of which sounds really scary but is not permanent. But don't do like I did and try to tough it out. I went on taking the AP for 3 weeks and did not call the doctor. I found out by accident that my liver values were off and THEN I called the doctor! Stupid!
    I got some other wild and crazy symptoms like serious fatigue, a 3 month sore throat, blisters on my fingers and toes, ringing in the ears. You can pretty much expect any danged symptom the disease cares to dish out.

    It's taken me a while to get back in shape, but now I just have normal up and down joint pain. I take 50mg doxy MWF and hoping for more progress.

    Here are some good things to remember:

    • It's fine to take a break from the AP for a week or two while things calm down.[/*:2onywk5p]
    • If you end up with elevated liver values and mino-induced lupus, this is usually temporary, and you can often go back on mino after a break (starting at a lower dose)[/*:2onywk5p]
    • If mino does not agree with you, there are other effective antibiotics, like doxycycline and zithromax. Get medical advice.[/*:2onywk5p]
    #312997
    kramstine
    Participant

    Hi Klogan

    Thank you so much for the advice. What a reaction you have had too!!! That sounds awful to get even new symptoms.

    I

    #312998
    lynnie_sydney
    Participant

    I agree. Sounds like a whopper of a herx. I am not sure who prescribed you 200mg daily but that IS a very big starting dose and sounds like way over for you. If you have a doc case managing, call him/her about this. You need to be able to manage the herx, it should not be that bad. And, if you are still experiencing breathing difficulties, you need to see a doc of any description anyway. If it were me, I would take a rest from mino until things settle down and then start very slowly. Your body may be one of those that can only take small amounts of mino to produce results and a herx. With AP it is not a case of more is better, very often the opposite. Take care and hope you feel better soon. Lynnie  

    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)

    #312999
    kramstine
    Participant

    Thanks Lynnie, I will take a rest from the mino. How is it with the clindamycin? does that give herxheimers just as much…just wondering, do you know? The next problem is that my tablets come in 100mg and that

    #313000
    Maz
    Keymaster

    Hi Kramstine,

    Do you have mino tablets or capsules?  If tablets, you should be able to get a tablet cutter from your local pharmacy. If caps, you can buy empty caps from a health food/vit store and split the contents to make 50mg caps or less. Over here in the US, I believe the smallest capsule dose is in 50mg caps. Some people need less than this, so they will divide them. If you get the pelletized version of brand Minocin, it's possible to count the pellets, but these are tiny and I would think quite an arduous task! 😯

    Peace, Maz

    #313001
    kramstine
    Participant

    Thank you for the advice, Maz. I have mino capsules not pelletized. I

    #313002
    Maz
    Keymaster

    Hi K,

    Glad you had a chance to speak with Dr S.  If anyone knows what you should do it will be him! 😀

    You asked about clindamycin as a substitute. It's meantioned on the main site as an alternative and some people do use it, although it can be harder on the gut with an increased risk of c-difficile. In the case of systemic scleroderma, from what I understand, you're better off sticking with minocycline, if you can find a tolerable dose for you. It has better anti-inflammatory properties and, while I'm no expert, most sclero patients seem to do best on it.

    Hang in there, K, from what you describe symptom-wise, it “sounds” like you're herxing, which means the abx are getting to the pathogens. If the breathing difficulties get concerning, then be sure to contact your doc just to check in and make sure you're okay. If you need to lower your dose in that kind of instance, then it won't hurt till things stabilize again, as the others have already suggested. Sometimes these hypersensitivity reactions can mimic allergic responses to medications (and vice-versa), so perhaps wisest to just keep an eye on over the next little while. Definitely not worth suffering unbearable herxing, if you can lower the dose a bit to get over the hump. 

    Also, do what you can to detox while this is going on…the lemon/olive oil detox drink might help with this, as well as the epsom/peroxide baths, keeping your eliminations moving out, etc.

    Hope you feel better soon!

    Peace, Maz

    #313003
    kramstine
    Participant

    Hi Maz. I

    #313004
    Maz
    Keymaster

    [user=263]kramstine[/user] wrote:

    About the clindacymin: my treatment is a combination of minocycline and clindamycin IVs and I was just wondering if both medicines can result in herxheimer or if it is only the oral form. Do you know? 

    Hi K,

    For everyone it's really individual, but yes…my understanding is that it's possible for both forms to cause a herx. Some sclero patients find they don't herx noticeably at all….although I wonder about this, because even if the herx isn't noticeable, often you hear people voice the fear that they feel their disease is getting worse and not turning around in the early months. So, it's probably more a question of degree. For other sclero folk here, they have shared that they do herx. If you check out JB's thread on her visit to Dr S in Iowa, it describes in detail her journey to Iowa and her start on IV Clindy. She also found when she got home that the herxes were a challenge. Degree of herxing is probably dependent on the pathogen load one is carrying.

    I have RA, so it's a little different, as most RA patients herx to some degree. When I started antibiotics, I was bedridden, too, and had to have my arms and legs raised on pillows for a couple months and I couldn't even pull the sheets over me over turn over without help…really awful, but I had to take really high doses of a combo of antibiotics for the Lyme. Dr Brown describes this worsening in the early months as a really good sign that AP is getting to the bugs…if it's any help, at all, this is what kept me going and believing that something was happening and I would get well again….and I have. After this initial period of worsening, things slowly…slowly… improved. It's just so hard when you're going through it…I totally understand. :crying:

    Hopefully a few more sclero patients will help you out here and give you some personal insight on how they did when they started out. You're such a pretty, young woman…this isn't fair…it isn't fair at any time for any one, but you have youth on your side. So, keep the faith, K. It takes time, a lot of patience and faith. The one irreplaceable gift is that AP offers is hope of a better future.

    And to help with the herxing….make sure to keep your fluids up…lots of water to help your body cleanse out those toxins.

    You're in my thoughts.

    Peace, Maz

     

    #313005
    Kim
    Participant

    Hey K,

    Bless your heart, your posts are just so upsetting to read.  I've been dealing with SD for 2+ years and I have all the symptoms you describe, but not as severe.  Still have the chills and night sweats, fatigue, numbness, lots of joint pain everywhere.  I dread going to bed because all of the aches and pains are either worse or just more noticeable — still not sure about that. 

    What you describe does sound like a herx, but that level sounds like so much more than what a typical SD herx sounds like that I wonder if you have more co-infections going on, such as RA or Lyme?  You're doing the right thing by reaching out to other people living with these diseases.  I've learned more from these kind people than any doctor I've seen so keep posting.  You're also choosing the only program that made sense to me and I've seen huge improvements, although never fast enough.

    Sure hope you can find some answers soon……kim

    #313006
    Randy
    Participant

    Hi Kramstine, Maz, Kim, et. al.,

    Wow! I thought I was reading about MY symptoms (though I thankfully do not have any breathing problems, and I haven't had night sweats for the the last several weeks). However, as a diffuse SD person, one of my main questions has been how to differentiate between the diffuse SD symptoms and the (hopefully) herxing sypmtoms.

    As it turns out, I just saw Dr F. on Tuesday (I've been on AP 4 months and have had 2 clindy IV cycles), and he said that a lot of my symptoms are herxing , which is encouraging. He also said he was very pleased with me and told me to keep on the course. He said that the herxies will be less bad over time, as there will be less bugs dying off.  He said the “other” SD pains, e.g., inability to walk on hard surfaces, and swollen calves, … will get better and go away…..though it may take a year of AP…..

    Yes, this is enouraging to hear.  And it is encouraging to hear from other diffuse SD folks that they ARE better, in remission, or recovered.

    I have read that diffuse patients feel constantly ill, like a mild flu.  For me the AP, particulalry during the clindy IV's, does exhaserbate  SD symptoms. Some symptoms, such as the debilitating shoulder blade sharp pain/knots are definate herxies, according to Dr F.  Most of the time, Tylenol enables me to be functional, and not a single doctor have indicated any concern about me needing 3,000 mg a day, on the average. So, for example, I take Tylenol right after a clindy IV. Now, the day after the 900mg clindy IV's, I feel particularly bad and Tylenol doesn't do much. A couple of days later, thankfully I'm feeling more normal, diffuse SD-like.

    So, if the symptoms aren't due to SD or the herxies, perhaps they're reactions to medication or suppliments, etc.  Fore example, my back of the hands, forearms, ankles, knees, and calves do feel like they are burning and itch (not too bad yet).  Dr F says this is due to the mino.

    I'm hanging in there with you, thanks to everyone's support and encouragement.

    Randy

    Diffuse SD since Apr '07
    AP since Feb '08
    100mg Mino twice daily
    Stopped Clindamycin IVs Aug 2019
    "No one should profit over someone else's illness"

    #313007
    Maz
    Keymaster

    [user=223]Randy[/user] wrote:

    However, as a diffuse SD person, one of my main questions has been how to differentiate between the diffuse SD symptoms and the (hopefully) herxing sypmtoms.

    Hi Randy,

    I don't think I've had the pleasure of chatting with you before and just wanted to thank you for your post. 😀 Sounds like Dr F has everything well in order and you're getting wonderful support and reassurances from him. That really “does a body good!”

    Although I have RA, not sclero, I believe the mechanism of herxing would essentially be the same. That is, that as pathogens die off and excrete toxins, this stimulates the immune system to release inflammatory cytokines, which cause the temporary worsening in symptoms we experience. These can be pretty awful in the beginning, but as Dr F said, they do become less and farther apart as time goes on.

    Likely we carry a multitude of pathogens, all with their own life cycles that make them vulnerable to antibiotics at different times. So, it follows that our herxes will probably follow sometimes predictable and sometimes not so predictable patterns as time goes on and different pathogens are being targeted. When I started on mino pulsing, I could predict easily that I'd be worsening within a few hours of the dose and feel better on my days off. This has changed more recently and the herxing is less with mino and more since I added zith…herxing coming predictably 3 to 5 days after the one tablet! The herxing is also a bit different from the herxing on mino in that the zith is definitely getting to other tissues in my body….heart and endocrines especially.

    Is there much difference between the actual experience of herxing and flaring? Not really, because the mechanism is virtually the same….mycotoxins eliciting a cytokine response. However, you may find you have some different symptoms in addition to your disease process, as the antibiotics begin to penetrate into tissues where pathogens have been hiding and have lain quiescient previously. At least, this has been my experience.

    Therefore, it's not very easy to distinguish between herx or flare until after the fact, I've found….herxes tend to be shorter-lived and herald improvements, whereas flares tend to be longer in duration and forerunners to continued worsening. So, while going through periods of herxing, the thing to look for is the overall improvement trend over time. As long as you're progressing over a period of weeks or months…or even years…then AP is working. If progress seems slow or comes to a dead halt with regression, it might just mean the protocol needs some kind of tweaking or something else needs attending to…like diet, yeastie-beasties, etc. According to my Lyme doc, the primary pathogens tend to get hit first….then sometimes the 'quiet ones' have a bit of a field day when the coast is clear and the  competition has been suppressed sufficiently, thus making their presence known.  

    At least…this has been my experience and what I've gleaned about the whole process…and today I am having a 95% better day!!!!!!! YAY! It's been 21 long months of patience (sometimes not so patient!), faith and pain endurance, but soooo worth the wait!!!!

    Sending very best wishes to you and your lovely family, Randy! Hope is on the horizon. :roll-laugh:

    Peace, Maz

     

     

    #313008
    kramstine
    Participant

    Hi Randy, good to hear more about diffuse SD and AP, and wonderful to hear doctor F finds you are progressing.

    [user=223]Randy[/user] wrote:

    I have read that diffuse patients feel constantly ill, like a mild flu. 

    I have never heard of that, do you feel that way? Well, I never did so I

    #313009
    kramstine
    Participant

    Lemondrink

    Maz wrote this earlier:

    “Just take one whole lemon, scrubbed and quartered (careful to remove stickers and green ink). Throw it, skin, seeds and all into the blender. You need the pectin in the skin to emulsify the oil or it will be like a salad dressing with the oil floating to the top.

    Next, add a cup (I add 12 ozs) of pure, filtered water into the blender.

    Add to this, one or two tablespoons of first cold pressed olive oil (greener the better).

    Blend on high till everything is well blended. Then, strain the mixture through a metal seive and throw away all the pulp, leaving just the lemon drink.

    You can also add ice cubes to the mix before blending to make a kind of smoothie…some people add Stevia sweetner or honey, but some prefer the tart taste. I also add a hunk of ginger, which is nice in combo with the lemon and has great anti-inflammatory properties. If you're really brave, a clove of garlic! Garlic has anti-microbial and anti-fungal properties and is good for the gut. Must admit, though, I've done this a couple times, but it was just too garlicky tasting. “

    (I copied this to my word program and back. I couldn

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