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  • #307723
    Woods1977
    Participant

    Herx or something else

    #369353
    laurawm
    Participant

    Hi Woods,

    I’m so sorry you are having such a difficult time. Of course there could be many explanations for your current flaring, but I will tell you that I also was extremely intolerant to minocin and had the kind of reaction you are speaking of from the very beginning. I’m pretty stubborn and kept at it for a year, with some improvements, but then a complete nose dive in January to the point of almost needing to be hospitalized (it was bad…). I have discovered that heavy metals, candida, and a complete inability to digest and absorb my food and resulting food allergies were keeping me from moving forward. Many people do not have these issues, or not to the degree that I apparently have had, and so they are able to follow a more standard course on AP therapy. Obviously, minocin helps so many people and hits at the infectious aspect of the disease, but if you continue to struggle and react with flu like symptoms to 50mg minocin overtime, there is something else going on. It may be completely different from my experience, or may be similar, but regardless, don’t give up. Keep searching and trying different paths and don’t be afraid to trust your instincts – they are there for a reason! I realized that my candida was as bad as it is/was when I ate some unpasterized Bubba’s sauerkraut in December and it sent me to the bathroom six times in a row within an hour. I bought an infrared sauna and five minutes in it had me in the bathroom all day the next day. Something was off. I started making my own cultured veggies and completely changed my diet and went off all meds other than T3 and LDN and had my first solid bowel movement in over three weeks. I weighed 100 pounds. I know infection is a huge part of all of this, but the immune system is so complex and things like metals and environmental toxins can block our enzyme pathways and keep us from being able to digest/metabolize both medicine and food. I’m sure others will have ideas and it’s always tempting to see people’s circumstances through the lenses of our own experiences, but I just wanted to say that what you are describing sounds relatable to me and it is possible to find your way out and still stay off immunosuppressants.

    Laura

    #369354
    Maz
    Keymaster

    @Woods1977 wrote:

    Now it

    #369355
    Woods1977
    Participant

    Hi Laura,

    Thanks so much for your post! I can certainly appreciate your experience… thanks for sharing! Based on feedback from you and others on this forum, I plan on the following:

    ** Get tested for heavy metals/toxins
    ** Visit scheduled in October to Infectious Disease/Lyme Literate doctor (he’s one of the best in Michigan, hence the wait).
    ** Switch to Doxy if warranted
    ** Diet is pretty good- 100 times better than prior to RA diagnosis! I avoid processed foods like the plague!

    @laurawm wrote:

    Hi Woods,

    I’m so sorry you are having such a difficult time. Of course there could be many explanations for your current flaring, but I will tell you that I also was extremely intolerant to minocin and had the kind of reaction you are speaking of from the very beginning. I’m pretty stubborn and kept at it for a year, with some improvements, but then a complete nose dive in January to the point of almost needing to be hospitalized (it was bad…). I have discovered that heavy metals, candida, and a complete inability to digest and absorb my food and resulting food allergies were keeping me from moving forward. Many people do not have these issues, or not to the degree that I apparently have had, and so they are able to follow a more standard course on AP therapy. Obviously, minocin helps so many people and hits at the infectious aspect of the disease, but if you continue to struggle and react with flu like symptoms to 50mg minocin overtime, there is something else going on. It may be completely different from my experience, or may be similar, but regardless, don’t give up. Keep searching and trying different paths and don’t be afraid to trust your instincts – they are there for a reason! I realized that my candida was as bad as it is/was when I ate some unpasterized Bubba’s sauerkraut in December and it sent me to the bathroom six times in a row within an hour. I bought an infrared sauna and five minutes in it had me in the bathroom all day the next day. Something was off. I started making my own cultured veggies and completely changed my diet and went off all meds other than T3 and LDN and had my first solid bowel movement in over three weeks. I weighed 100 pounds. I know infection is a huge part of all of this, but the immune system is so complex and things like metals and environmental toxins can block our enzyme pathways and keep us from being able to digest/metabolize both medicine and food. I’m sure others will have ideas and it’s always tempting to see people’s circumstances through the lenses of our own experiences, but I just wanted to say that what you are describing sounds relatable to me and it is possible to find your way out and still stay off immunosuppressants.

    Laura

    #369356
    Woods1977
    Participant

    Hey Maz!

    As you always say, we’re all just patients here, and it’s so very true! I’m definitely going to get tested for DILE as you recommended. If my AP doctor won’t do it, I know my primary doctor will. Although she doesn’t want much to do with my AP therapy, her position as been “As long as you’re doing well I’m fine with whatever your doing as long as you’re not in danger”… If something starts to go off course, then I”ll put my foot down. ๐Ÿ™‚ She’s a great listener- and I’ll likely need to inlist her help in trying to figure this out. I definitely have a “must do” check list to complete sooner than later. I WISH I could get into the Lyme doctor sooner than October… **sigh**… but at least I’ve made an important step in the right direction.

    PS-
    I read your post related to DILE. I’ve had some recent ANA testing as follows:
    ANA: Positive (1:80 Homogeneous) ***Please note, I’ve had both positive and negative ANAs since the start of my RA journey, before I ever began Minocin therapy.
    Anti-DNA DS– Negative

    I have never been tested for the other ANA related components you speak of in your post. However, I will write them down and ask one of my doctors to test me for them.

    @Maz wrote:

    @Woods1977 wrote:

    Now it

    #369357
    PhilC
    Participant

    @Woods1977 wrote:

    Now it

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

    #369358
    enzed
    Participant

    Hi Woods,

    I was on Mino for 6 months on varying doses and with washouts but just couldn’t tolerate it. Symptoms very like yours including stomach problems, very stiff body and painful knees. The stiffness got worse and knees and ankles then swelled up, ending with extreme fluid retention. It got so bad I stopped the Mino completely and told my regular doctor who prescribed fruesemide for the fluid retention.It took a month to get rid of the fluid retention although the stiffness had begun to recede within a few days of stopping the Mino.

    I then sought an expert opinion from an experienced AP doctor and was advised my body could not handle the extreme die off caused by the Mino and that I should switch to Doxy. My regular doctor was happy to change the script based on that advice. I waited a month until the fluid retention was completely gone from knees and ankles before I started on the Doxy at 100mg twice daily.

    I have not had the serious and intolerable reactions on Doxy that I had on Mino and my stomach deals with the Doxy just fine. My body just can’t deal with the rapid die off Mino creates. Detoxing and probiotics made no impact whatsoever on the effects of Mino. I made gains on Mino but I am continuing to make gains since switching to Doxy, including a reduction in skin thickening which is great. The pain in my knees that I had before I began AP, is now gone and I attribute that to the Doxy.

    That’s my recent experience.

    #369359
    Woods1977
    Participant

    Phil-
    I totally agree with you. In this scenario, I

    #369360
    Woods1977
    Participant

    Hi Enzed,

    Wow, reading your story sounds just like mine

    #369361
    Woods1977
    Participant

    Hi everyone,

    Spoke with Dr. S from Iowa via email… I mentioned my “flu” like symptoms along with a high level overview of what the last year as been like. Based on the information I provided, he thinks the Minocin is working… It’s working too well. He said the same thing my own AP doctor said- pull back on the dose for about 2 months and see how I do. Once I’m feeing better slowly ramp back up again. Furthermore, he doesn’t think any co-infections are involved.

    I’m still going to perform my due dilligence a patient (get additional testing and such)… but I feel like death, literally. I haven’t had any Minocin since Monday of this week, but now the flu like symptoms wax and wane (although not as bad as they are when the Minocin). I really don’t think I can handle another dose of this stuff- I’m already feeling horrible, I can’t imagine taking it when I feel like this.

    @Woods1977 wrote:

    Herx or something else

    #369362
    Krys
    Participant

    @Woods1977 wrote:

    Dr. S … thinks the Minocin is working… It’s working too well.

    I really don’t think I can handle another dose of this stuff- I’m already feeling horrible, I can’t imagine taking it when I feel like this.

    If it is a reaction to die-off, it means a powerful cytokine cascade got set in motion. Slowing down / taking a wash out might help, but if the resultant inflammation is already very high, waiting it out may just NOT work, or it may take forever.

    I’m in a similar sort of crisis. Definitely toxins released due to a big and sudden die off made me howl in pain within 40 minutes. All my joins are inflammed, some immensely painful and some organs are suffering, too. Even though it was not due to abx, it was definitely a die off reaction. I am taking very potent anti-inflammatories + NSAIDs, Chlorella/clay for detox and herbal tinctures that reduce cytokine cascade. And it is still NOT working.
    So I think a really intense detox is in order.
    I’m thinking of a coffee enema + fasting (or just green juice fasting).
    I would have done the enema at the very beginning because I know it really works. It used to do wonders for me in the past. But then, last 2 times, I could not sleep for 2 nights in a row. That was when I had no problems sleeping. The situation changed. I can’t sleep whatever I do. So I kept postponing. But enough is enough! I’m bringing in the big guns now!

    So: have you done any major detox since the problems started? Are you doing detox on an ongoing basis?
    Have you been eating anything that could exacerbate the reaction? I know I did. I’ve been using some heavy cream in my coffee lately in spite of milk allergy. I “convinced” myself that heavy cream is all fat, almost no dairy, so it should be all right. I do know better and I am sure it mightily contributed.

    Hope you feel better soon,
    Krys

    #369363
    Woods1977
    Participant

    HI Krys,
    I’m sorry you’re having such a rough time right now.

    I haven’t been detoxing at all since this process began. I had a very mild case of RA when I started AP, and since I was a quick responder (pain free just after 3 weeks of treatment), I really thought I was out of the woods. I did well for about 2 months, then slowly began to slide backwards… We pulled back on my dose, I did well again, maintained for about 2 months, then started sliding backwards yet again…

    I am going to do the lemon/olive oil detox daily- and I’m considering the coffee enema as well, although I need to read up on it some more…. I’ve heard it does wonders, so I’ll like try it sooner than later.

    I’m just not convinced what I’m going through is a “herx”… due to the fact I slide slowly backwards, I feel like something else is going on that is preventing me from getting the full benefit of AP.

    Regardless, I’m definitely going to try that coffee thing! Thanks so much for your post!

    Woods

    #369364
    enzed
    Participant

    Hi Woods,

    When I was needing a fast detox while having a huge MIno die off reaction my body couldn’t handle, I read around the forum and decided to start the fix with a colon cleanse.

    I bought powder just called “Colon Cleanse’ so that it’s brand name but there are lots in the ‘health food’ stores. It gave me the option to start slow on a low daily dose or go fast with a higher dose, and I decided to go fast so took one large dose. ๐Ÿ˜ฎ If you decide to do that be sure to stay right by a loo for 24 hours. ๐Ÿ˜ณ ๐Ÿ˜† I’m just glad I did. ๐Ÿ˜›

    I then detoxed using green tea because I like the taste of it, although my main issue was fluid retention that had swollen my knees to twice their normal size and were very painful. I used prescription medication to get rid of the fluid retention and that took a month. I then switched to Doxy from Mino.

    Interestingly I can tolerate 200mg a day on Doxy while I couldn’t even tolerate 50mg on MIno. The pain went from my knees and the skin thickening reduced on Doxy but yesterday my knees began hurting again so I figured I still need to detox regularly. To that end I bought a juicer and found a juicing detox recipe as follows;

    Detox recipe: from Jason Dale’s book ‘The Juice master’. It has over 100 recipes for juices and smoothies including several for detoxing but there will be free recipes on the net, just google from plus other members have posted recipes here too. I guess it depends on the taste you like best.

    2 apples
    1 carrot
    1 slice of lemon with rind on
    quarter yellow bell pepper
    1 inch cucumber
    quarter stick of celery
    1 inch broccoli stem (but Broccoli thickens blood so leave it out if on blood thinners)
    1 inch raw beetroot
    add ice if you want it cold

    You can alter the ingredients you use of course. I used half a lemon including the rind, but no carrot, and no broccoli. It tasted good to me. I’m putting ginger in the next one to see what that tastes like.

    I actually don’t think it was anything I ate that made it ‘worse’ for me. I think the die off caused by the Mino or Doxy killing off bacteria has been the only cause of herxing in my case. I have no known food allergies and they’ve been investigated over the years.

    Best of luck with whatever detox methods you use. Please post the results. I am following this thread with great interest. Hope you feel better soon.

    #369365
    Woods1977
    Participant

    Hey Enzed… I sent you a private message regarding my detox with the lemon/olive oil recipe. I’ll keep you posted on any other results I come across. Again, thanks so much for posting this, it’s good to have options! I haven’t done any detoxing since I began AP- I probably should have done this a long time ago, although I really thought I was out of the woods because I did so well so fast.

    #369366
    Krys
    Participant

    @Woods1977 wrote:

    I am going to do the lemon/olive oil detox daily-

    Hi Woods,
    I hope lemon/olive oil or other detox measures are already helping you!
    I think it is significant that

    since I was a quick responder (pain free just after 3 weeks of treatment), I really thought I was out of the woods. I did well for about 2 months, then slowly began to slide backwards… We pulled back on my dose, I did well again, maintained for about 2 months, then started sliding backwards yet again…

    But I don’t know what it means?
    Doing a wash-out may help but will not be a solution for ongoing infection. Are you going to apply Phil’s suggestion and switch to doxy?

    I’m just not convinced what I’m going through is a “herx”… due to the fact I slide slowly backwards, I feel like something else is going on that is preventing me from getting the full benefit of AP.

    One always slides backwards during the herx, but after it is gone, there should be improvement. Change of a dose usually produces a herx, too. But if there is no improvement later, it was a flare, not a herx. Unfortunately, one can only assess whether it was a flare or a herx in hindsight.
    If I had been you, I would switch to doxy and once I feel all great I would try mino again.

    Detox always helps, if it works. If the detoxification pathways are blocked, it is that much harder to achieve the results it should bring.
    It is hard to figure out what is going on! I wish you great results with whatever you decide!

    I don’t know what is the infectious agent behind your RA. But I do believe that introducing gluten-free and dairy free diet may be of huge help how you feel. Most of us here who started on a diet did not believe at first it applied to us. It is hard. Every habit is hard to break and sadly gluten and sugar seem to be a more powerful addiction than cigarettes and alcohol.
    Those who are very resistant to making a dietary change often say that they see no rhyme, no reason. That they eat this or that and they do not see the effect. To complicate matters, sometimes it is not that apparent. Sometimes a single food culprit does not produce any strong reaction on its own but when combined with other offensive foods the reaction is potent. Lets say that the inflammatory foods for you would be gluten, corn, potato, dairy and strawberries, but any single one does not produce inflammation (unless the inflammation is already present). When 3-4 of them are eaten within a single meal, the reaction would be hugely inflammatory.

    Gluten, dairy and nightshades, corn, bananas, cytrus (sometimes strawberries) are the most common offenders for rheumatic patients. As it may not be a strict allergy, but rather an intolerance, an allergy test may not pick them up.
    The only way to find out is to do a complete wash out of gluten and sugars for 6 weeks, with 2 weeks duration being enough for many to see a marked improvement. Going on just white meat (safer just in case red meat is a problem, too) + low starch veggies diet will be great help in lowering inflammation. Drinking freshly made green juices (carrot seemed to cause joint pain for me in the past – no more nowadays), so rich in live enzymes (and antioxudants, vitamins, etc), while following restrictive diet, will be huge help.
    Unless you have a cold condition (low body temperature, feeling cold all the time, pale complexion, pale tongue), all veggie diet for a few days should do wonders. If are experiencing a cold condition and feeling weak and depleted, it is not advised to go raw or even just meat + veggies and fruit.
    Juicing always helped me but when I did it while depleted and cold, I developed all body organs trembling and weakness close to fainting. When the condition is not cold (in high inflammation it is usually hot), diet of veggies (raw and cooked) and raw juicing should help with inflammation and pain within just a few days!

    Another reason to embrace gluten-free, dairly free diet:
    Mycoplasma (and many other bacteria, I think Borrelia and Bartonella) damages the mucous membranes and the gut lining is always affected with the villi being destroyed as a result. Maybe if it is caught very early, the damage is only slight? I had had mycoplasma infection since childhood and quite severe destruction of the mucosa diagnosed by various doctors at teenage / young adulthood. I did not know there was any connection until the release of Buhner’s new book that devotes a few hundred pages to mycoplasmas. They colonize not only synovial tissues in the joints but also infect all cillia and mucous membranes throughout the body, including the microvilli in the small intestine.
    Even without the above (it was a revelation to me), most people with chronic diseases notice that once they go gluten-free, and often additionally dairy free, their symptoms greatly improve. Some lucky ones claim that the joint inflammation is gone once they follow the diet.
    It is never easy. But as damaged mucosa and villi always mean leaky gut and autoimmune reactions to indigested food particles, with inflammation, pain, swelling, etc. Therefore it IS worthwhile to stop eating them, at the very least when the inflammation is really high!

    Sorry, Woods. I thought I had stopped trying to convince anybody of anything. And now I am doing it again. ๐Ÿ˜ณ
    Hope you feel well very soon,
    Krys

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