1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
Discuss the article on the Forums.

How do I know if I am having "Die off"

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by xlynx, Jan 14, 2010.

  1. xlynx

    xlynx Senior Member

    Messages:
    163
    Likes:
    3
    London, UK
    :Sign Help:

    Over the last 4 weeks I have been increasing my anti fungals, I am now up to taking 3g caprylic acid and an oregano complex.

    Im feeling poisoned with headaches that seem worse than normal over the last month but then I am unsure if its die off or if I am just having a worse month.

    How does one distinguish between general malaise and Die off?

    Does anyone know how long should I expect to feel worse for when taking anti fungals?

    Also any ideas on how long until an improvement can be seen?

    I know thats a lot of questions but Im desperate and am 6 weeks away from a doc appointment!

    Thank you
  2. Andrew

    Andrew Senior Member

    Messages:
    1,945
    Likes:
    1,189
    Los Angeles, USA
    I don't have an answer, but I wonder if this is die off or if this is a bad reaction to the supplements.
  3. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,918
    Likes:
    2,972
    N. California
    Hi xlynx--

    I'm sorry you are feeling so crappy. :( I have been there many times.

    It's REALLY DIFFICULT TO FIGURE if one is having die-off or just an adverse reaction. That's the million dollar question. But either way, it can be real hard on your body to go through so much discomfort... even when it's for a worthy cause, like killing fungus.

    When I end feeling as miserable as you describe, then I just stop the culprit supplements for 2-3 days, drink a lot of water to flush my system, and resume with half the dose. If I feel terrible with half the dose, I stop again for 2-3 days, flush out, and cut the dose in half again. If I have no relief after cutting back my dose twice, I stop either taking it altogether and look for an alternative that is less brutal, or I take it at a very minimal dose--like once per week. Sometimes a little can go a long way.

    I hope that's helpful. Good luck.
    SickOfSickness likes this.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,188
    Likes:
    4,790
    Albuquerque
    xlynx,

    I've had a lot of experience with anti-fungals and die-off. Sorry that you are in this tough corner. If you do have a lot of candida or other fungals, that much caprylic acid and oregano could surely cause die-off. I think DB's method of reducing the dose or taking a break, would give you good info--if you feel better, it is probably die-off. Or you could be radical and increase the dose and see if you feel worse!:eek:

    I have tried both. If it is die-off you need to get the dead or dying buggers out, pronto. One thing that has helped me is an enema with some nystatin powder in it. If you don't have nystatin, (don't try oregano!) you could also try a little bit of caprillic acid from a capsule. Also try some binders like clay or psyllium to "catch" the dead critters and carry them out of the body.

    If you decide it is die-off, my experience says that it is better to go more slowly and not stress the body so much. It varies a whole lot as to how long it takes to finish the major die-off--how much of a fungal problem you have and how you are responding to treating it. I have done many major assaults on candida, had success, but realized later that for us with our weird bodies, most of us are very susceptible to fungi and need to do continual maintenance as well as avoiding stuff like sugar. I use caprylic acid and oregano for maintenance, but not such high doses.

    Hope you get out of this mess soon!

    Sushi
  5. xlynx

    xlynx Senior Member

    Messages:
    163
    Likes:
    3
    London, UK
    Hi Andrew, I hope that is not a bad reaction but is a possibility so hard to tell.

    Hi Dreambirdie, Thanks for your advice, I have cut the dose and increased my water and will stick to it for a few days and see if I improve, I have been thinking about doing it but thinking is not my strong point at the moment :tongue:. Hopefully I will see an improvement in the next few days.

    Hi Sushi, thanks for the info on the enema I will look into that a bit further. What sort of dose do you take for maintenance? I think once I am past this assault I am going to go for maintenance!
  6. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,918
    Likes:
    2,972
    N. California
    Improving DIGESTION is the key

    xlynx---

    I hope you have some relief soon. I know how yukky this can feel.

    I wanted to tell you also that I spent over a decade attempting to "kill candida," and had only minimal results with the assorted anti-fungals, until I took measures to improved my digestion. This was the KEY for me.

    My digestion was so poor that food literally putrefied in my gut. I could not digest protein at all. In fact I spent several nights a week puking my guts out with horrible migraines, that were the result of the putrefication. This went on and on for years, because NO DOCTOR/PRACTITIONER GOT IT what the core issue was. :Retro mad: I tried digestive enzymes with meals (only minimally helpful) and ginger tea with each meal and other herbal digestive formulas... etc. I had one practitioner insist that I chew each mouthful of food 100 times before swallowing, :eek::eek: which I actually attempted with ZERO results. After a while I began to believe I was allergic to animal protein, and tried to revert to eating only rice and vegies. But the more I avoided the protein, the skinnier and weaker I got. And with all this, the candida proliferated.

    Then one day, a friend of mine let me try a digestive aid of hers, which contained Betaine HCl. I had feared taking it, because I thought, like many people, that I had TOO MUCH acid in my stomach. (oh SO WRONG!) As it turned out the that Betaine HCl was the miracle of miracles for me. My digestion changed literally overnight. After years of torturous nights beside the toilet, my migraines and vomiting came to an abrupt end. And now that I finally digested my food, the candida began to become much less of an issue. With a few rounds of L-glutamine to help heal the gut lining and GSE (grapefruit seed extract) I got it down, and rather painlessly, to a nearly non-existent level. :victory:

    I had had a very limited diet up to this point, with MANY food allergies, which now began to disappear. Within a few years I could eat raw food again and even a little fruit, which I hadn't been able to do for a decade. Over time the candida did not re-infiltrate. I have not had any serious candida issues since.

    I wanted to tell you my story about this to inspire you to look into your own digestive issues. For me improving my digestion made candida practically irrelevant. This was a big problem solved.
  7. Hysterical Woman

    Hysterical Woman Senior Member

    Messages:
    855
    Likes:
    2
    East Coast
    Wow - Dreambirdie,

    That is quite a statement regarding low stomach acid and Hcl. How dare you fly in the face of the Tum's manufacturers!!:D

    FYI, here is a site where you can do a simple test to see if you have too much or too little stomach acid.

    http://www.ehow.com/how_4542542_self-other-stomach-related-pain.html

    Please keep in mind that I have found this info on the internet for what it is worth. If you try it, post your results and let us know. Many CFS patients obviously have complicated digestive issues.

    Take care,

    Maxine
  8. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,918
    Likes:
    2,972
    N. California
    YOU BETCHA! :victory::victory::victory:

    For so many years I thought I had TOO MUCH stomach acid. I put myself through so much unnecessary hell because of this. :(:Retro tongue::Retro tongue:
    It was QUITE A REVELATION to discover it was the COMPLETE OPPOSITE.

    To get the appropriate AMOUNT of HCl, I followed the directions of a holistic MD. He told me to add one cap (of HCl) with every meal, until I began to have discomfort. Then to lower down from that by one. I found that 5 caps was the ONE-TOO-MUCH and lowered down to 4 caps. This is my usual dose with average sized meals. Less for a smaller meal, up to 5-6 for a REALLY BIG meal--like Thanksgiving.

    Betaine HCl was the one thing that really worked for me, without a doubt, with clear instant results.

    If only other aspects of this illness were as simple and straightforward as that!
  9. xlynx

    xlynx Senior Member

    Messages:
    163
    Likes:
    3
    London, UK
    wow

    Thanks for sharing dreambirdie, I love to hear an inspiring victory over cfs related symptoms. I actually really happy you told me about that because my doc keep holding me back from trying it even though my stomach acid was low on my test. I dont understand why he is not keen on me taking it. I think I am going to go for it and just see what happens.

    I hope it helps with my weight loss issue as I am losing some mega weight. Have lost over 30 kilos in 8 months.

    Hi Maxine thanks for test I am going to give it ago in a minute.

    I want a cfs victory!!!!! :D
  10. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,918
    Likes:
    2,972
    N. California
    Your welcome, xlynx!

    I can't imagine WHY your doc resists your trying the Betaine HCl. :confused:

    The worst that can happen with one try is a little heartburn. And since you have LOW STOMACH ACID, which is common especially among those with candida, you clearly seem to need it. It might even help!

    I used to be very skinny--I am 5'7" and weighed only 105 pounds. After the HCl I gained weight and kept it on.
  11. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,918
    Likes:
    2,972
    N. California
    There's one more thing I want to tell you about candida, which is... that when they blew up the atom bombs in the Bikini Isalnds back in the early days of the atomic tests, the only thing that survived those nuclear explosions was... you guessed it CANDIDA! :eek:

    So if even an atomic bomb can't destroy candida, it will be pretty damn hard for a supplement or drug to do so. The best you can do is create an environment that is inhospitable to candida--one with a powerful digestive tract and good stomach acid, and one that is so full of healthy probiotics, that they crowd out the space for candida to take hold in. That's what worked best for me.

    Let us know how it goes.
  12. Hysterical Woman

    Hysterical Woman Senior Member

    Messages:
    855
    Likes:
    2
    East Coast
    Low Stomach Acid


    Wow, Dreambirdie

    The holistic MD seems to have really known what he was talking about. Your tremendous result is nothing short of specatular. It was be really interesting to know exactly what processes took place for such a great outcome. Of course, this stuff gets really detailed and sometimes muddied when you try to get into the details.

    Just as a matter of interest, I looked into a couple of books to get a better idea of the problems that low stomach acid can cause. These are the two I came up with:

    From Could It Be B12?

    "B12 deficiency can strike anyone, at any age, but some patients are at far greater risk than others. The majority of cases of B12 deficiency stem from malabsorption disorders, and seniors are at highest risk because 30 to 40 percent of them have atrophic gastritis. This condition drastically decreases levels of the stomach acid needed to free B12 from animal proteins, which is necessary so that it can be absorbed."

    and from The Magnesium Miracle

    "It's also important to understand the grave effects low stomach acid and low magnesium have on calcium absorption. I've already talked about calcium's inability to dissolve in water, making it entirely dependent on stomach acid to put it into solution. However, when it leaves the stomach's highly acidic environment it enters the alkaline environment of the small intestine and precipitates out of solution unless sufficient magnesium is present. Without magnesium to keep it in solution, calcium quickly deposits in soft tissues throughout the body.

    In the large intestine, it interferes with peristalsis (the waves of muscle contractions that push food through the bowels), which results in constipation. When calcium precipitates out in the kidneys and combines with phosphorous or oxalic acid, kidney stones are formed. Calcium can deposit in the lining of the bladder and prevent it from fully relaxing, and therefore from filling completely with urine. This leads to frequent urination problems, especially in older people."

    Those older people discussed in there would be me.:D

    In any case, thank you so much for sharing your experiences with us. Did you ever provide that information in another thread?

    Take care,

    Maxine
  13. Hysterical Woman

    Hysterical Woman Senior Member

    Messages:
    855
    Likes:
    2
    East Coast
    Hi xlynx,

    Yes, please let us know what happens for you with the test.

    BTW, I apologize - have we hijacked your die off thread or do you think this might be related??:(

    Sorry,

    Maxine
  14. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,918
    Likes:
    2,972
    N. California
    Hey Maxine--

    I can't give credit to the holistic MD for figuring out that I needed HCl. He came many years later, AFTER I'd already been on HCl.
    My friend giving me her HCl to try out back in 1997, is where I found the answer.
    The MD merely taught me how to DOSE IT HIGHER, which has benefitted me more, especially with harder to digest meals.
    I wanted to pass this dosing agenda on to xlynx, so I just simplified the story.

    And yes, I have shared this victory over candida story on other threads, but I don't know where?
  15. Hysterical Woman

    Hysterical Woman Senior Member

    Messages:
    855
    Likes:
    2
    East Coast
    Hi Dreambirdie,

    Thanks for clarifying that, I thought maybe I had just misread it. Of course, I don't know how that would have happened since I NEVER do such things.:Retro smile:

    Don't worry about trying to remember about where you shared the candida story. It is a powerful one, tho, and I hope that lots of people have read about your experience.

    Take care,

    Maxine
  16. xlynx

    xlynx Senior Member

    Messages:
    163
    Likes:
    3
    London, UK
    Hey Maxine, lol go for it I am hijacking this whole forum with my threads all day so I wouldnt mind me :cool:, Cant wait to order up my HCl is there any particular one I buy or just get any?

    I will post the results on that test and let you know, candida free here I come!

    I think I might just sack my doctor and donate to this forum, I get more helpful advice here then anywhere else :).
  17. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,918
    Likes:
    2,972
    N. California
    xlynx--

    I just want to make sure you got it that MY DIGESTION IMPROVED QUICKLY, due to adding the HCl. GETTING CANDIDA UNDER CONTROL TOOK LONGER. If you have other digestive issues, you will have to address those as well--like parasites, bacterial overgrowth, dysbiosis due to low levels of acidophilous. It's best if you have a practitioner who's really astute at assessing these things. That will make your process go more smoothly.

    As for the Betaine HCl, I get the NOW BRAND--I like them best. There's others too, but here's the scoop on NOW's Betaine HCl:
    Betaine HCl (from beets) 648mg
    Pepsin Enzymes (NF 1:10,000) 150mg

    I also regularly (3 X daily) took some really good probiotics. There's so many out there, and everyone has a different preference.

    In my case, I definitely had to stay away from sugars (even fruit) and most carbs (grains, potatoes esp) for about a year.
    I ate a really healthy diet of mostly organic vegies (raw and cooked) healthy fats (avocados, nuts, seeds, olive oil), and animal proteins.

    It will take some fine tuning to figure out what you need, but trying the HCl is a good start.
  18. xlynx

    xlynx Senior Member

    Messages:
    163
    Likes:
    3
    London, UK
    Hi Dreambirdie,

    Thank you for clarifying, no problem I know its going to take long I just get excited quickly, :D as soon as the evening comes and I am feeling a bit better I get excited and optimistic about everything.

    I know now that nothing seems to be quick about cfs :Retro smile:. What bugs me about the doctor is I had very low acid on my test and I asked him about 5 times should I start taking it but he said yes yes and then we didnt have enough time so we left it but its another 6 weeks until my next appointment and how wrong can I go by trying it, at worst ill burn a hole in my sofa :D. This way I can also tell him if it worked for me or not.

    Really appreciate the info though as so much of this illness is about the unknown being able to discuss some of the points with others really is great. And having only been properly ill for 8 months and not being able to find a single person with cfs and then to find this site is a blessing. So wait I have had a cfs victory, finding this site :victory:. (I have been dying to use that smiley)
  19. Catseye

    Catseye Senior Member

    Messages:
    109
    Likes:
    27
    SW Florida
    die off or what? betaine hcl

    I'm with Dreambirdie all the way, get some acid in you if you have any doubts about digestion working. And if you have CFS, then you should try it just because you have CFS - most CFSers have digestive issues. The worst that can happen is a little heartburn which you can quickly dispel with some baking soda or those nasty Tums. And since betaine hcl is fairly cheap, it's one of the first things a CFSer should try.

    About the die off, the liver is what gets the brunt of it so try some liver cleanse pills. I like Ultimate Liver Cleanse for pills and if you feel like going all out, try Chinese bitters. Chinese bitters is actually a mixture of 2 tinctures, bupleurum root and gentian root. I have a small tincture bottle of each. I put a dropperful of each in a little bit of water and drink. It works in minutes and you can use it 3x per day. The taste is awful but the relief is huge if you are having liver issues. And most CFSers have liver issues, too. It's all tied into digestion and the intestines. You're not just taking these so you can experience relief yourself, your poor liver needs some help to function better. I would stay away from liver cleanse pills that have mushrooms in them just because these can feed yeast. Like Dreambirdie said, you should get relief just from the betaine hcl alone, but additional liver help is always a good idea. :D

    We also need stomach acid to kill microbes. It seems like doctors are purposefully kept ignorant about the importance of killing intestinal "bugs" and having digestion working properly. Wonder why? Hmmm . . .:In bed:

    Because unwanted intestinal "guests" and bad digestion are the key to most chronic diseases. And CFS is right there at the top of the list.
  20. xlynx

    xlynx Senior Member

    Messages:
    163
    Likes:
    3
    London, UK
    Hi Catseye,

    Thanks for advice especially about the liver cleanse stuff. I have tried some milk thistle and am definitely going for some chinese bitters :Retro smile:.

    My liver is definitely ready for a break!

    I googled for a bit and didnt have luck finding any chinese bitters where do you get the from?

    Thanks

See more popular forum discussions.

Share This Page