Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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What happens when you can't tolerate supplements anymore?

Discussion in 'General Treatment' started by outdamnspot, Oct 20, 2017.

  1. outdamnspot

    outdamnspot Senior Member

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    I made a thread recently asking for supplement recommendations and listed some of the stuff I've tried -- which covers most mainstay supplements, like B12, Vit D etc.

    My 'adrenal fatigue' is really bad, and I can crash from very minor stressors like noise etc. (which are plentiful at home). However, I am also finding that I can't tolerate anything anymore, and that previously useful supplements don't help the way they used to. The only things that have provided some relief have been the Ayurvedic herb Haritaki (which I can't stay on because it kills E.Coli), and Vitamin C before bed. Symbioflor 2 was also good, but less helpful the last time I tried it.

    The Vitamin C (time release, 3-5g) was really working for about 4 weeks and I could tolerate a lot more stressors. But now all it does is put me to sleep, with no residual benefits the next day and I can barely tolerate a cup of coffee.

    So what happens? My baseline state is one where I'm assaulted by inflammation, adrenaline etc. and all the horrible symptoms of 'low cortisol' like feeling extremely overwhelmed and anxious. But it doesn't seem I can take anything to help either.

    I ordered some glutathione to try, but don't know if I'll tolerate it either. Other than that, all I have are other herbs like Oregano etc. but it doesn't seem like my body can handle the die-off they produce.
     
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  2. Learner1

    Learner1 Forum Support Assistant

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    One thing I've learned about supplements is that they work best as a part of an individualized comprehensive program.

    I looked at your thread and though you've taken some good things, it wasn't clear how they were chosen.

    A few thoughts come to mind:

    1) Your digestive system needs to be capable of digesting what you take in and getting it into your bloodstream. Candida, leaky gut, an unfortunate mix of bacteria, and parasites can all impact this. A DNA stool test could help identify problems to target.

    2) If your digestion is a problem, alternative ingestion methods must be used. Depending on the supplement, you might try sublingual, transdermal, injectible, or IVs to get them into you.

    3) What is it your body needs? Are you supplementing things you're short of? Could you be oversupplementing to create symptoms of toxicity?

    4) Are you supplying the necessary cofactors to make what you're taking work? (Like B2, B6, and magnesium to make B12 work, or ALA to recycle antioxidants, or CoQ10 to use other mitochondrial nutrients, or keeping a good zinc/copper ratio.)

    5) Are you toxic? Most people are. You could inadvertently be mobilizing a toxin, like arsenic, lead, or mercury, producing symptoms, if you are short of the other nutrients (and fiber and water) to completely eliminate them once mobilized.

    I have no idea what's going on in your situation, but your symptoms are worrisome.

    Having some good testing done and the help of a good functional medicine doctor would be useful in turning things around. Better than soliciting random supplement advice from strangers on the internet. You need a program that's customized to your biochemistry and not to be following what someone else is doing.
     
    Last edited: Oct 20, 2017
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  3. justy

    justy Donate Advocate Demonstrate

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    Hi, i sympathise and can totally relate. I have terrible low cortisol and adrenal fatigue issues but no longer tolerate any meds or herbs or supplements, apart from vitamin C, which i take daily as a mast cell stabiliser and for keeping things regular.

    We are all different, but im choosing to no longer do anything. All the Drs visits, supplements, meds and money spent have resulted in me being more ill and less able to tolerate anything, including now being upright, eating and just, well, generally living.

    Im just going to carry on with my life the way it is until i cant carry on any longer. Sorry to be such a downer. I'm all out of suggestions.
     
  4. ChrisD

    ChrisD Senior Member

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    I've noticed over the last six months that my tolerance to my supplements constantly changes. For example, if I go without anything, I can start to become really unwell, as I am clearly deficient in something. But then as I phase supps back in, my health improves significantly, maybe by 10% for a period of time - maybe a month. Then after that period of time, I start to become worse again with the supplements as if they are overloading the liver and kidneys or perhaps I am becoming too dependent on them and the digestive system is having to do too little work, who knows?!
     
  5. Lotus97

    Lotus97 Senior Member

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    I can't speak for the supplements, but it would be very good if you get your home environment stabilized. I've taken a lot of supplements (and still am taking many), but I've found that getting a lot of sleep and rest during the day (watching TV or using the computer DOESN'T count as rest) has been the most effective treatment for adrenal fatigue-type (I'm not sure what the actual cause is for me or you) symptoms.

    Also, stay away from coffee. Aside from the caffeine being a very poor way of dealing with fatigue, if you're sensitive to mold the mycotoxins in coffee could aggravate it. But mainly the caffeine is the reason to stop.
     
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  6. Sallyagerharris

    Sallyagerharris

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    I would evaluate your foods and concentrate on getting all your vitamins, minerals and nutrients from these. Even if you have a deficiency, unless it is life threatening then eat loads of the foods that contain the vitamins that you need. I managed to lower my overall cholesterol down by 4 in 4months through a concentrated cholesterol focused eating regime which is actually extremely nutritiously dense as well with lots of fibre. I also make a weekly mass vegetable, mostly above ground, ratatouille / casserole ... with over 15 veggies in it and then add protein from fish, meat, eggs etc. I start each day with nuts, seeds, berries, some yoghurt or alpro for no dairy, plus oats. And then small quantities to fuel my body.

    I also add garlic, turmeric, fresh herbs and other beneficial spices and herbs that help my body. Eating like this helps not only your nutrition, but your pre and probiotic bacteria’s to have balance.

    Once you have done this for at least three months see how you are feeling. To me that is the time to then be tested, if necessary to check for deficiencies.

    Eating a wide variety of foods helps vitamins and nutrients to be absorbed eg calcium, magnesium and vitamin d and k ... eat foods with these in helps calcium to br properly absorbed into the body.

    X
     
  7. outdamnspot

    outdamnspot Senior Member

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    I saw an expensive CFS doctor who did a stool test. It should some pathological overgrowths. She treated me with antibiotics; another CFS doctor said she used the wrong antibiotics and likely destroyed all my flora. Therefore, the test results are now invalid and at $400, I can't afford to do it again.

    Most of the supplements were oral, though I tried transdermal magnesium and couldn't tolerate that either. Where I could, I supplemented with co-factors e.g. B-Complex when trying the B12, but it didn't help.

    I do daily coffee enemas for toxicity, which help.

    I am aware my symptoms are worrying. I'm trying to stay alive another month or two to finish a project, but beyond that, I give up.
     
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  8. outdamnspot

    outdamnspot Senior Member

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    @justy I'm really sorry to hear that, and I sympathize. You aren't a downer. I've mostly given up too. I don't really think it's fair to expect people to live like this (gravely ill/disabled, and unable to even tolerate any treatments).

    @Lotus97 I'm aware rest is invaluable, as I learned when I was able to get out and stay with a friend for a month. My family are abusive and don't care. I've begged them for 6 years to try improve things and they haven't. The situation is what's contributed to my profound deterioration.
     
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  9. Learner1

    Learner1 Forum Support Assistant

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    So sorry you got bad advice. This is very likely the root of your problem.

    I went through chemotherapy which seemed to blast everything in my gut, and then was on antibiotics for chronic bacterial infections.

    Its necessary to repopulate the
    microbiome while ensuring the parasites are gone. Eating a variety of foods will help, insoluble fiber, then, and, when you can tolerate them, probiotics. I've been rotating several good probiotics. It takes awhile but I've found things improve with persistence.

    What parasites were found? Did they use a drug that would kill them? Its necessary to matchup The right drug with each parasite found. And, in some cases, there are good botanical solutions, too.
    A doctor should be able to tell you if you're deficient in B12 (via a methylmalonic acid test), folate, magnesium, iron, and amino acids. There are standard lab tests that can show this, which will give you an idea of whether you're absorbing what you're ingesting and whether you need to supplement

    Different bacteria in your gut digest food and convert nutrients so they can be used by the body. If you're missing certain strains, it may be difficult for you to absorb the nutrients.

    Working with someone who is familiar with nutrients and healing the body would be best, customizing a plan for your needs, like a functional medicine doctor.

    In some cases, this can include injectible forms of nutrients or even IVs. Adding nutrients without knowing your needs can lead to unexpected consequences, like monlnilizing toxins your body cant get rid of, starting up a process that's been stuck which leads to a new bottleneck if you're missing a cofactors or toxicity if you're taking too much.
    I'm familiar with them. What's that doing to your microbiome? What evidence do you have that they're helping?
    Hang in there... This is vexing, lonely, and frustrating. It is possible to improve your situation. I encourage you to keep reaching out for help, no matter how discouraged you are.
     
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  10. Kes

    Kes

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    Hi @outdamnspot, I'm really sorry things are so difficult and your family are abusive and won't listen.

    Maybe you could stay with a friend for a longer period. Perhaps a friend could try talking to your family for you? Maybe your family might watch a DVD about M.E. such as Voices from the shadows.

    I second what @Learner1 said. Hang in there. I wonder if there are little ways that those who are supportive in your life would be willing to support you in more tailored ways that they don't currently realise you would find helpful.

    Maybe a brief text message each day. Maybe they could take on the task of finding you a good functional medicine doctor or research some other stuff that's difficult for you.

    I was touched by your supportive words to @justy when you're clearly in a very difficult place. I've been deteriorating and becoming less and less functional. I'm in bed most days for around 21 hours or more. 1or 2 days a week I manage to be up an hour or two more.

    I find it hard to stay in the present moment but projecting forward how I feel into the future has never helped me. Somehow the present moment always seems more bearable than imagining future scenarios which inevitably veer to the negative when I'm feeling bad and particularly so when in the midst of a bad crash.

    I really sympathise and obviously don't know what you and @justy are going through. I think we all need hope and with this illness our hope can be really shattered after so many setbacks and disappointments.

    The last few years I've become aware of a deeper hope in myself that's different to the hope I used to have which was more fragile. I believe it's a gift from God, a supernatural hope. As things have got worse this hope hasn't vanished. I feel a greater and deeper hope now than I did when I was less severely affected. It's only in the last few years that I've come to distinguish these types of hope, natural and supernatural.

    I'm Catholic.I pray.I try to get to Mass each week (it's the only time I go out usually) though I feel unwell I experience peace and consolation from Holy Communion and during the evening afterwards and also from Confession when I manage to go. I feel blessed to have had a number of experiences of God's love for me. At the same time, I've also experienced times of darkness and desolation.

    I only share this because I know you're both struggling and in the hope that maybe you might talk to God about you feel and that that might help you in particular how hurt and angry you may feel.It's my conviction that mysterious as it is, Jesus not only suffered for us but continues to suffer in us and with us.It may be cathartic. Sorry this has gotten so long. Hadn't planned it. Finally, I've found this helpful, Matthew 11:28-30..Also recommend The book of Job and Salvifici Doloris (On the Christian Meaning of Suffering) by St John Paul II written after he was shot by an assassin.

    I wish you both and anyone who reads this peace, health and every good thing
     
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  11. outdamnspot

    outdamnspot Senior Member

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    I wasn't able to tolerate any probiotics, other than Symbioflor 2 for several weeks. I use chia seeds soaked in water as a source of fiber. No parasites were found, but I have a Streptococcus overgrowth.

    I have a doctor I see once a month or so. He's just a standard GP. He recently did a blood test to check all of the basics, but I'm waiting for the results. I don't think I would have the finances or energy to see another functional medicine doctor, unfortunately.

    When I stop them, my mood and cognition deteriorates even further, though they are less helpful now than they were in the beginning.
     
  12. Learner1

    Learner1 Forum Support Assistant

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    Not being able to tolerate probiotics is a clue. Can you start in very small amounts? Or try a digferent probiotic?

    Would your doctor test immunoglobulins with subclasses, for viruses like Epstein Barr, cytomegalovirus, HHV6, Cocksackie, and for atypical pneumonias like chlamydia or mycoplasma? And a full thyroid panel, ACTH stimulation, homocysteine, methylmalonic acid, and RBC folate and zinc?

    These are all guesses but you might find something that can be treated.
     
  13. outdamnspot

    outdamnspot Senior Member

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    I went through 5 or 6 probiotics, and all crashed my adrenals and made me worse (I believe lowering histamine might also be a culprit). The symbioflor seems to be the most tolerable and improves my mood/anxiety; I've done ~3 courses of it, and one course significantly improved my energy too but I was never able to replicate the effect again.

    I was tested for most of the infections you list by a previous doctor and the results were negative, though he said testing wasn't very reliable and I could pay for a private lab overseas (which I couldn't afford). I'm hypothyroid, but can't tolerate thyroid replacement.

    I seem to go through patterns where my HPA-axis is almost overactive and seems to pump out cortisol (and I actually feel a lot better), then I'll crash after 3 or so days like that and just feel like death again. That's what happened the past 3 days and I thought I was actually doing better, but today I can barely sit up. I really feel so bad lately that I should be in hospital, but I also tried admitting myself twice and was turned away (for "wasting doctors' time").

    I have been thinking about trying the glutathione lozenges I ordered, and which arrived a few days ago, but I'm scared of making my current crash even worse.
     
  14. Kes

    Kes

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    Dr Sarah Myhill recommends Hemp oil, Coconut oil and Lecithin for brain fog. In general I can't seem to tolerate supplements anynore but I've been taking a little Coconut oil, maybe 1/8 or so of a teaspoon every other day or third day. I've not taken it consistently for v long as I get carried away with dose and it messes up my stomach (last couple of years have got bloating, relieved by chewing a few teaspoons of linseeds) if I have too much or have it every day but it has seemed to help my brain fog and mood.

    I used to take hemp oil but for some reason it started to overstimulate me and then I'd have a bad crash.

    I've not persevered with lecithin but a friend told me that it took a year of taking it to really help their brain fog so if tolerable and affordable it could be worth taking for an extended period of time even if no obvious immediate benefits. I'm planning to give it another go. I bought it from Dr Myhill in liquid/ treacly form and tried to take it on it's own and that wasn't a great idea, it was horrible like that.
     

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