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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Naturopath and supplementation and an overburdened body.

Discussion in 'Alternative Therapies' started by Misfit Toy, Apr 16, 2014.

  1. Misfit Toy

    Misfit Toy Senior Member

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    I recently went to a Naturopath for adrenal help. He's skilled in ayurvedic medicine and TCM along with naturopathic. Anyway, he basically feels that the gut should be treated first followed by everything else. The problem is, he put me on a ton of supplements and a lot to kill the gut bacteria and then wanted me on NO carbs.

    After about 3 days, I became really sick. I was put on this stuff called NEEM for the gut. It basically gets through the biofilms and kills yeast, parasites, etc. I started to itch really bad on it and had to stop it. But, I was also put on Butterbur and a few other things like Ashwangda.

    I find that the more I take, the sicker I get. I can't handle too many supplements or meds. Going off carbs was too much for me and I started to become weak. Really weak. I am allergic to milk and my options for food are limited. Eating nuts, protein and just veggies was making me feel sick and I didn't want to see another nut again. I can't have yogurt due to the milk allergy and goat's milk, I am also allergic to.

    I had to call him and tell him, I can't do this. I have to have carbs, I am weak and also that the supplements are just too much.

    He feels that because of my liver, I am unable to handle things. So, now he is sending me milk thistle, which I already have, but he wants me on his. This is expensive and I am exhausted and confused.

    I am really not sure what to do. I am tired, sleepless, I have horrible allergies, I have lost a ton of weight. I feel awful. The trees are budding and my nose is running like crazy.

    I need to tell him, I can only do one thing at a time and really not push it. It's too much on my body.

    I feel like no one gets this. You walk out with a gazillion supplements and you become sick. My body is not keen on being pushed. They make it sound so easy. "Treat the gut, the other things will fall into place. Here, here's a ton of supplements....take 10 pills in the AM."

    Now, I am so sick.

    I can handle TCM really well. Herbs, but that's about it.

    For 25 years, I have been on a quest to get better. Not well, but better, but the more I try....and the more time goes on that I have been ill, the more I am unable to tolerate "stuff."

    I used to take about 25 vitamins a day. Now, I can't do that. My body has gotten worse over the years.

    Does anyone have any advice? I am so frustrated.
     
  2. Dreambirdie

    Dreambirdie work in progress

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    I think you answered your own question right here:

     
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  3. Valentijn

    Valentijn Activity Level: 3

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    @Misfit Toy - We have problems with energy production, and completely avoiding carbs is likely to exacerbate the problem. Maybe avoid simple sugars as a compromise? I feel like I'm gonna die now if I go low-carb, even though it used to be very easy for me before I got ME.
     
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  4. golden

    golden Senior Member

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    sorry to hear this MT.

    i wish there was some fact sheets for APs (Alternative Practitioners) as they are sometimes worse than APs (Allopathic practitioners)
     
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  5. Misfit Toy

    Misfit Toy Senior Member

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    He wants me on 4 ashwangda a day...however you spell it. 2 rhodiola, omega 3's, a milk thistle which just came in the mail which has in it glutathione, grape seed extract... which I can't take. Methionine.. See, I only like doing one thing at a time. One ingredient, etc. I hate this. Wasted money. The cost of it was $28 and then he shipped it overnight for $10.00.

    Then 2 multi vitamins. I am so sick from this crap.

    I will tell him although I am not sure if it will make a difference. He keeps giving me the run down on his extensive knowledge. @golden, I agree. They throw so much at us. It makes my body nuts.
     
    Last edited: Apr 16, 2014
    golden likes this.
  6. Valentijn

    Valentijn Activity Level: 3

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    If he's got that much of an ego, he doesn't sound like much use as a naturopath. We can get plenty of that BS from mainstream doctors :p
     
    Last edited: Apr 16, 2014
  7. Misfit Toy

    Misfit Toy Senior Member

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    Yes, the first visit all he did was brag about how he studied in Nepal ayurvedic medicine and knows TCM, etc. Plus, herbs.

    I am not into egos. At all.
     
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  8. GracieJ

    GracieJ Senior Member

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    I use natural medicine 100%. Your naturopath most likely is right on the money for you in several ways except for one glaring huge piece: This needs to be done slowly, one piece at a time, so it can be tolerated. Everything you have indicated is good - but you cannot fix every body system at the same time.

    What works either seemingly does nothing, needing to build up over weeks and months to be effective - or, as you have discovered, acts so quickly you cannot tolerate it. The body is plastic and adaptable and always ready to go back to balance the very instant it is given the opportunity. Sometimes that means a lot of discomfort.

    After years of working on this, I am very convinced symptoms have to be addressed one layer at a time, and in an orderly way. It sometimes seems like it has to be in reverse order of how it came to be, or to rebuild systems in ways that allow each system/function to keep its progress. I have been working on food allergies with NAET. It has worked great and my immune system is stronger. With few exceptions, though, I cannot eat those foods. Adding them back was disaster, especially grains. I ended up with bad candida die-off again after several years thinking I was free of that. (Translation: Liver produces alcohol, for one. I am as drugged up and dopey as if someone had given me a huge shot of something.) It is obvious my gut and digestion still need work. I no longer consult nutritionists. It ends up I am paying them for me to argue against what I know I cannot tolerate.

    My advice for you would be to learn what those things do, and make your own decision what to try. I started with fixing my sleep, since that is so crucial for everything else. Then I worked on very gentle, slow detoxing. Then I worked on diet. I take a good handful of herbs daily. I recently had to cut out a bunch of other supplements and minerals (ten, at last count, probably more) because they use corn derivatives as fillers. That has been a nightmare, finding replacements.

    What has worked, in short, is keep the system very, very clean, my environment clean (filters everywhere for air and water), then add in good high-quality micronutrients and let the body follow its own wisdom.

    There have been several times I had to reign in my natural physicians and cut things back. It really is way too much at once. Build it slowly. Without the full lab picture we hope is someday coming, it is still guesswork whichever type of doctor it is. There is no knowing whether some things are down-regulated or up-regulated without good tests, and I have had almost no lab work done past basics over the years. A good, sympathetic and informed doctor ten years ago had no labs to draw on that are beginning to be used now, and if I cannot afford them, it is guesswork anyway.

    I absolutely cannot use a multi-vitamin. They make me ill and always have. Researching ingredients and components for years, several reasons why have emerged. The first is that many ingredients are not bio available. They just clog up the system and have to be expelled from the body (stress for the liver), or cannot be expelled easily without help, so are stored in the joints or in body fat and add to the toxin load.

    The second is that even the better ingredients are in such low amounts they do nothing. Most RDAs are useless when trying to heal a broken down body. Many nutrients need to be in megadoses taken carefully in balance with other nutrients.

    The third is that once you have reached a nice maintenance plateau with some nutrients, you no longer need quite so much, but cannot drop it out of the pill.

    The fourth and most compelling reason for me is that even the most well-meaning natural companies' scientists doing the compounding do not understand the differences in some nutrient forms, one over another, or are forced by politics or budget needs to use a cheap synthetic or a cheaper compound. Most vitamin E in multivitamins is fake. Most B12 is the wrong kind, and so on.

    I could go on and on, but it all comes back to what you already said and Dreambirdie commented on: You answered your own question. Take it slowly, one thing at a time.
     
    Last edited: Apr 16, 2014
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  9. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Ashwagandha was BAD for me, it gave me dizziness. Since I have super duper low cortisol in saliva and high in blood I had big expectatives but over time I have realised that at least for me, herbs for adrenal fatigue are either useless or harmful. I advice people to get on vitamin C and Panthetine (maybe also adrenal cortex extract drops) instead which is a more logical (and effective in my experience) way to support your adrenals.

    Food>Nutrients>Herbs. We are not made to need herbs, however I have found that some do work (Ginkgo Biloba, Horny Goat Weed, Maca...), sadly none of the so called adaptogens did.

    Gut wise for me it has been more important getting enough Betaine HCL and digestive enzymes to digest food and Propolis for the inflammation and doing very well-thought, careful dieting. Seacure is also good, I have to start taking it again. I assume for some killing pathogens is key but personally I just aim to digest well, absorb my nutrients and have a normal intestinal mucosa that does not react immunologically to almost every freaking meal.
     
    Last edited: Apr 16, 2014
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  10. GracieJ

    GracieJ Senior Member

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    Oh, but he could be so famous for healing ME/CFS! :rofl:

    Learn what you can from this guy - have him suggest reading material.

    Then fire him if you need to do so.
     
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  11. Misfit Toy

    Misfit Toy Senior Member

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    The supplement he had me on for the gut was causing me to itch all over. I have zero appetite right now. I agree with you so much @GracieJ . One thing at a time, but they feel nothing works unless you do several things at a time. Like, you can't clear the gut without helping the liver and adrenals and all of it. I emailed him and let him know what I plan on taking.

    If he doesn't like it, I will no longer see him. He needs to realize how sick I am and how fragile my body is when tinkering. One little thing can throw everything off. I can't sleep...haven't slept for 4 nights, but a horrible sleep. All because this "crap" is too much.

    I also feel that if you don't feel like taking something one day...like your body is just tired and sick and you feel crappy, then you should listen and cut back.

    Another thing...all of them...TCM's, naturopath's...they all tell me they will cure me. This really bothers me. I have been sick very long. Stop with "I will get you well," BS.
     
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  12. Mij

    Mij Senior Member

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    I would also wonder what his experience is with people who have chronic illnesses and have been sick for over 20yrs?? This might work for those who have issues but are otherwise healthy.
     
  13. GracieJ

    GracieJ Senior Member

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    @Misfit Toy My hope for you us that you can forge a working relationship with this doctor, one that fits your budget and needs and helps you learn what is needed to move forward. It is possible, but may be rough for a while.

    Let him know gently and kindly who is boss! He may yet be a tremendous help and resource.
     
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  14. Mij

    Mij Senior Member

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    I agree @GracieJ ;get in the drivers seat. If I took every supplement and test my integrative functional doctor threw at me I'd be sicker and poorer. He would change his mind months later after his pts didn't improve. He was genuinely compassionate and tried to help his pts but I didn't want to be his guinea pig anymore.
     
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  15. Ema

    Ema Senior Member

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    If you're still trying to work out the IVIG, it seems like all these supplements will just confuse the issues.
     
  16. Cheesus

    Cheesus Senior Member

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    I recently started Chris Kresser's paleo diet. It is too early to tell what the outcome of it will be, but it allows starchy vegetables for carbs and you can test some grey area foods after a month. I really like the flexibility of it. It is all about finding what is right for you, not what someone tells you should be right for you. Perhaps this is something to consider.

    I also should note that following the dogmatic protocol of a naturopathic practitioner pushed me from simply being chronically ill but still working full time into leaving work and, ultimately, being bedridden (which is where I am at now). A number of people on forums told me "just push through it, you have to go hard on your dysbiosis to get over the worst of it". This was bad, bad, bad advice. It made me sicker and sicker and I ended up (hopefully semi-) permanently damaging my body.

    I urge you to ease off and do whats right for you. This guy may or may not know what is good for the population at large, but the expert in your health is you. As others have said, peel the onion one layer at a time. Don't dive straight in head first - dip a toe, a foot, a leg until you can ease yourself in. This may take a long time but the alternative is not really an alternative!
     
  17. GracieJ

    GracieJ Senior Member

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    You can take all the best nutrients in the world that would heal you - but if your body cannot process or absorb them, they are useless. I wonder many times when people write on these forums that such-and-such med or herb did not help and made things worse. They may have just turned their back on an answer - in the future with a more ready system.
     
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  18. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    @Misfit Toy Any doc worth his salt would KNOW that you start one thing at a time very slowly. He is working for you, not the other way around. As others say, put your foot down, take control and if he won't have it move on.

    My NP knows to only start things on low doses and if she told me otherwise I'd refuse.
     
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  19. GracieJ

    GracieJ Senior Member

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    @Ema @Misfit Toy

    Huge point. You have been writing about other protocols that are ongoing. Any doctor worth seeing needs to take it all into account and hold off on some things if necessary. It may not be the right time for some of this if not all. You need to know what is working.

    Is this new tack separate with the financial changes and family issues?
     
    Last edited: Apr 16, 2014
  20. maryb

    maryb iherb code TAK122

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    @Misfit Toy
    I'm the same can't do the no carb diet, I got so sick on eating walnuts.......only just recovered. I gave up on that, reduced my carbs but having enough to keep my gut happier. I've not had any fruit for a couple of months now nor sugar so hoping what I'm doing is enough.

    People are right, who really understands how sensitive we are, eg. I can't even take a quarter of 1 x Biocare B complex. which is only low dose anyway...They really don't understand, even the ME docs.

    I just stop everything when I feel too rough and introduce safe stuff slowly again after a few days off.
     
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