The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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How do i trust?

Discussion in 'General ME/CFS Discussion' started by trickthefox, Jul 5, 2015.

  1. trickthefox

    trickthefox Senior Member

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    I appologise for this rant! i hardly ever do this but need to vent and need some guidance


    does anybody feel completley overwhelmed with the list of things that could go wrong with CFS?
    I'd like some advice from old timers here, and some people who have fully recovered.
    At this stage I have tried lots and lots of things which sadly didn't work like i'd hoped. Amongst this list is FMT,Lightning process,antifungals,antibiotics,,dysbyosis,leakyguthealing,acupuncture,meditation,relaxation,vitamin/mineral supplements, ATP support, immunemodulators,imune boosters, immune supressors, probiotics, prebiotics,infra red sauna, minor chelations etc etc etc etc

    Now whats left the possibility of Lymes, Heavy Metals, T3 thyroid, Mould exposure, Environmental posioning etc. etc. etc. But what i want to know, is how, when you have put in so much time, money, and effort into researching other conditions and have just ended up worse, can you trust these things?

    Even if i got a lyme test from one of the more specific labs, and it came up positive, how could i trust that months of antibiotics would help. Healthy people also get exposed to these things and have antibodies and are completley fine. Or if i had heavy metals in my hair, how would i know that months of chelation would make any difference or even make me worse? I have completley lost my ability to trust.

    I feel like if i look hard enough for something wrong with me, i could find it, except it wont necissarily mean that treating it will make a difference and that scares me, I've spent probably close to £50,000 over the past 6 years of this illness, seen who are meant to be the best doctors in the world for M.E. and i'm worse than ever

    I am seeing a therapist at the mo, doing some accupuncture, and also trying to live as balanced, and stress free, eating healthy, still keeping up with my lightning process, resting, making time to laugh, do the things i like when i can and yet am still very sick, so not researching and trying things feels like staying static, and yet when i try treatments, the more i do, the more my heart breaks and my optimistic attitude dies a little more when they fail. I know there probably not be one single thing that i can attribute to my healing and it will be a multi pronged approach of lots of little changes, but ive put in so much work with that too, and still, im here.

    i just want to get better so much

    Please
     
    Theodore, Beyond, Wayne and 7 others like this.
  2. lansbergen

    lansbergen Senior Member

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    May I ask what you do with the lightning proces?
     
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  3. trickthefox

    trickthefox Senior Member

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    Yeah the lightning process is a way to switch the 'fight or flight' stress response off manually, by using neurolinguistic programming, actions, and visualisations get yourself into a calmer state, which theoretically puts you in a better place for healing
     
  4. lansbergen

    lansbergen Senior Member

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    Can you be more precise? What do you do?
     
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  5. lansbergen

    lansbergen Senior Member

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    @Kina @SOC @Bob @ Sushi anybody

    I think this person needs help.
     
  6. daisybell

    daisybell Senior Member

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    Are you resting enough and really pacing yourself?
    For me, one of the things that has been really helpful in terms of my state of mind/wellbeing has been accepting my current level of health. That doesn't mean I don't want it to be better, but just that I can live with how I am without feeling hugely distressed on a regular basis! For me, it's important to be ok with the moment... Even if the moment can suck!
    My other big help has been LDN....
     
  7. trickthefox

    trickthefox Senior Member

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    @iansbergen Its a series of actions,thoughts, and movements you do out loud whenever you catch yourself having a thought that would activate the stress response, its meant to be using the concept of neuroplasticity to eventually reprogramme your brain so that your default response to things isn't stress - it would take way too long to explain exactly how to do it and the mechanisms behind it but theres a book that explains it that you can buy on amazon for a couple of pounds second hand :) It didn't sort out my M.E. but it has helped in a big way with stress. You could probably find out a detailed description if you did some google detective work :)


    http://www.amazon.co.uk/Get-Life-Yo...6087738&sr=8-2&keywords=get the life you love
     
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  8. trickthefox

    trickthefox Senior Member

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    Hey daisy, i am housebound, so i feel like i am resting, although i am doing an awful lot of research too so maybe I'm not resting in the right way, I'm also starting LDN next week so hopefully that will give me some relief too :)
    My main issues other than the fatigue and debilitating brain fog are huge digestive problems/food reactions
     
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  9. daisybell

    daisybell Senior Member

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    I imagine you have had all the tests for food intolerances and allergies?
     
  10. Hutan

    Hutan Senior Member

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    Yes, I agree it can easily be overwhelming.

    Assuming you meet the CCC criteria for ME/CFS:

    Right now, I'd say that the more certain a person is that they can cure you, the less you should trust them.

    The more you have to pay for a treatment, above and beyond a reasonable consultation fee, the less you should trust the treatment provider.

    The more a person suggests that your emotions or behaviour has caused this illness or that changing your emotions or behaviour will cure you, the less you should trust them.

    The very fact that there is this proliferation of treatments is proof that there isn't yet any treatment that is producing miraculous cures. If there was such a treatment, everyone here would know and would be lining up to do it. (I hope this will change very soon!)

    My personal recommendations would be to:
    * find a good mainstream doctor you like and double check nothing like coeliac and thyroid issues has been missed
    * try an anti-viral;
    * see a good orthostatic intolerance specialist (assuming you have OI issues);
    * sort out any sleep issues;
    * take no more than a handful of supplements that particularly appeal to you;
    * continue on with your healthy diet and gentle life style;
    * learn about pacing;
    * keep abreast of advances in the understanding and treatment of the illness (eg by checking in to this forum)

    For anything else, think very very hard about the cost to you in terms of money, time, energy and emotional well being versus the benefit. I found it has been good to make a list of issues or treatments I'm interested to try and prioritise them. I am working through the list one by one as time, money and energy allow. Don't feel guilty that you aren't doing a whole lot of things. Most almost certainly won't work.

    Best wishes
     
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  11. trickthefox

    trickthefox Senior Member

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    The food intollerence/allergy test has kind of become unnecessary because i can only eat about 5 different kinds of food without having a big reaction - chicken, corjettes, lettuice, carrots, duck, and small amounts of squash - and olive oil but even these foods give me issues sometimes. I definitely have issues with Dysbiosis, and bacterial imbalance after so many antibiotics but these have been very difficult to correct
     
  12. Effi

    Effi Senior Member

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    hi @trickthefox
    I'm not sure if I can give you any pointers as to what else you could try. I can just say that you're not alone in this situation (I'm housebound too). There is still so little known about this illness that I feel like there's not really one place where we'll get THE answer to our problems (although this forum comes pretty close :)) .

    Like you said, you've tried a lot of things, and they didn't make you better, or made you even worse. What I personally try to do is I try to keep my balance, stay as close to my baseline as possible. I think getting better (if possible) is a VERY slow, time consuming process. I sometimes have to make myself stop looking for answers for a while, cause research means mental exertion and that is just as energy consuming as physical activity. The key is not to push yourself, even if it feels counterintuitive.

    good luck with everything! :hug:
     
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  13. slysaint

    slysaint Senior Member

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    After nearly 5 years I stopped looking for a cure. I still was a member of Action for ME and so read the quarterly magazine to keep up to date with new treatments etc. But I stopped fighting, moved from east Sussex to west Sussex, got rid of my mortgage. Tried to stop thinking about life before ME and just did what I could when I could. I was much happier for a while and my health improved. That was 9 years ago. But about 5 years ago my mum died and with all the stress and family wrangles I relapsed and from then its been one medical problem after another. But I can't put it all down to ME as I'm also getting older. Due to really bad reaction to corticosteroids last year I've been going through TSW(topical steroid withdrawal) for a year now. Although it's been hell, it got me back into the "how do I fix this mode". I have absolutely no faith in doctors anymore as thus far every" treatment" they've come up with has caused something else and only suppressed the original problem. They never take my underlying condition(ME), into consideration.
    Having said all that, I have been completely drug free for a year and whilst I am no way cured, my energy levels are up, I'm stronger, have put on weight and sleep better. The ovarian cyst which I was told needed surgery, has gone, the kidney stones I was getting are no longer a problem.......
    Slowly, I'm getting some kind of life back. The reason I've started coming on this forum was to find out if now with hindsight I could make more sense of it all, but sadly it would appear that things haven't really moved on. I hope you find a way to get through how you feel at the moment, sorry if that sounds patronising, wasn't meant to. I just take it one day at a time.
     
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  14. A.B.

    A.B. Senior Member

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    A lack of trust is a pretty ordinary reaction to the many interventions that promise too much. Don't blame yourself for being grounded in reality.

    In my experience it is especially the interventions that work with suggestions and positive thinking that ultimately end up creating the most disappointment because they set up impossible goals (such as curing an obvious illness through thoughts).

    I think one good way to build up some trust in yourself and your decisions is to do more research and spend more time scrutinizing things.

    You definitely should not blindly trust any interventions and promises. The vast majority of interventions are at best speculative or outright fraud targeting desperate patients (and it's not always easy to tell which is what).

    If you don't want to try anything that's perfectly fine too. It's good to save your money. If you want to spend it, consider donating to research. In a few years there may be much better treatment options available.
     
    GracieJ, Sidereal, ahmo and 5 others like this.
  15. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Hi, @trickthefox, and welcome to Phoenix Rising.

    I think that the prevailing view of the Lightning Process on here is that it is a big con, and can do more harm than good. If you are using it to tell yourself that you are not ill, this is very unwise IMO.

    With ME it is vital to listen to your body, and not push it when it tells you you need to rest.

    Pacing is vital. Some people use a heart rate monitor to help with this. It can prevent or greatly reduce the post-exertional malaise (PEM) that is so characteristic of ME.

    A healthy diet is probably also vital. A lot of us find that reducing carbs helps, and also cutting out gluten and perhaps dairy.

    Before trying any new supplements or treatments, do your research on whether it looks as though it might specifically help you, e.g. using the search facilities here. Different things help different people, and some people can't tolerate things that work really well for others.

    This is a great place for getting ideas for treatment and how to proceed with it safely.

    Sometimes it's necessary to persevere with an intervention for a while before results are seen. I have tried a few things in the early days, without much idea of what to take with what, how much or for how long, and they didn't work. When I learned more, and made the changes in a more organised way, I got some good results.

    You won't find many people who have been cured, but you will find a number of people who have achieved a degree of improvement.

    As for whom to trust - don't do it absolutely with anyone you don't know really well. I think it's best to maintain a little distance and caution at all times. But everyone can make innocent mistakes, so don't be too hard on well-meaning people who get it wrong. We can all get a bit carried away at times!

    Hope that all makes some sense.
     
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  16. Hutan

    Hutan Senior Member

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    Trickthefox, that sounds really miserable.

    My kids and I have gone through a number of stages of this illness, with each stage having a predominant symptom. The times when our gastro issues were the worst were definitely the most horrible. I'm not surprised you are feeling down.

    I don't know how long you have had those digestive issues. Perhaps like us, you will find that the illness eventually moves on to another stage with predominant symptoms that are more tolerable. I really hope so.
     
    Last edited: Jul 5, 2015
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  17. trickthefox

    trickthefox Senior Member

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    Thanks guys, i think the problem recently, was i was doing such a huge amount of research, i wouldnt act or spend money without being certain that something had a lot of scientific credibly and validation or atleast a very large amount of anecdotal evidence. I would spend a lot of time looking through articles on pubmed and all the scientific literature i could find, coupled with peoples anecdotal experience (the accupuncture im doing at the moment is more for relaxation than hope of a cure - sounds contradictory being turned into a human pincussion to relax, but it helps :) ). I would invest so much into particular areas, get specific tests and found many dysfunctions, then put a picture together and tried to treat it accordingly. Most recently I found through testing a large bacterial imbalance in my gut which has a knock on detrimental effect on methylation issues, for that im taking targeted gut specific antibiotics (rifaximin) along with nystatin to tackle the yeast followed by FMT and probiotics to recononise my gut in hope that the overgrowth doesn't come back. Scientifically it all makes sense, and the cure rates in trials for what i'm experiences range from 60 to 85% And yet, i have no faith, no trust in what im doing because this is the thousanth time ive found something to chase and treat, so many of the interventions I have partaken i have found very sound solid reasoning and logic as to why I would do them, and then it seems to either make me worse, or leave me months of time, and hundreds of pounds out of pocket. I really want to re find the faith that I can make it through this. I used to be so much more optimistic

    Regarding the lightning process, it was available to me for little to no cost, so i don't regret it, it's not so much that im telling myself im not ill when im using it, more that im using it to create visualisations that help switch my sympathetic nervous system off, and achieve a calmer state. I like to keep an open mind as western treatments are very symptom based so treating the very driver-achiever personality type that i have does make sense to me too and i find some spiritual practices very helpful for my sanity. Thinking that there is a bigger reason for all this suffering kind of softens the blow
     
    Last edited: Jul 5, 2015
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  18. trickthefox

    trickthefox Senior Member

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    Also i find it very difficult to trust things like Lyme diagnosis from labs like Igenix or heavy metal burden from labs like doctors data because you could have a negetive result and a doctor would say 'well thats because youve been ill so long your anti bodies may have gone into hiding' or a positive result but you may have completley gotten over lyme years ago and have something completely different in which case long term ABX would be very detremental. Or you could have low heavy metals and they would say 'thats because your detox systems arnt working because there is so much heavy metals in your body' or super high heavy metals which may mean absolutely nothing because I bet most people have certain high heavy metals too!

    When you get given conflicting information like this from 'experts' how the hell are you meant to trust any treatment protocoll? And this is stuff coming from leading M.E. hospitals like breakspear, or Dr myhill

    I am currently working on Dr. De Meirleir's theory on Hydrogen sulfide producing bacteria, because i have an overgrowth of streptococous, and my H2S test came back strong positive, and i believe all my M.E. issues started either after picking up a nasty parasite, or the MMR vaccine which i had 2 months before my M.E. began, but i wander if the gut problems are yet another symptom of a larger picture. Its overwhelming
     
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  19. Effi

    Effi Senior Member

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    It is so confusing! There is so much information around, a lot of it based on solid science, so why is it not working? I have asked myself (and others) that question many times. If there was a magic protocol we'd all be following it. I think the one person you should trust is yourself. And your body. Once you get to know the signals your body is giving you, you'll instantly know if something is working for you or not. I stopped caring about it being scientifically proven or not. I always seem to be the odd one out anyway.
     
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  20. duncan

    duncan Senior Member

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    @trickthefox , your concerns about being mislead with Lyme results (should you get tested) are shared by many, and on both sides of the aisle.

    You mentioned IgeneX. One way to mitigate the risk of others misinterpreting your Lyme test results is to request a copy and interpret them yourself. If you wish to embrace the CDC 2Tier system, you can simply go to the CDC's website to find their requirements. I would hope the NHS has something comparable, but you may wish to verify that.

    You can check your scores against their public thresholds, and you can make your own decision.

    I realize that can be an intimidating process. I am not trying to add to your concerns. I just want to let you know that checking on your own is considered by some as a viable option as long as you can be privy to the specifics of your lab results.

    BTW, I have never used IgeneX, and I don't remember how they report results based on others I have reviewed, but in the US if you have a Western Blot done, some labs actually volunteer on the results form whether you are considered positive or not.
     
    Last edited: Jul 5, 2015

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