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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Treatment, recovery, where to start?!!!...

Discussion in 'General Treatment' started by EnduringAngel, Sep 29, 2013.

  1. EnduringAngel

    EnduringAngel

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    I have been ill for a decade now and each year have declined more and more. Am now at around 10 or 15 % on Dr Myhills fatigue scale.
    Nothing I try works, I have no family or friends and am struggling to get online much or do my own research anymore as its hard to take in.

    I really feel I need to stop feeling so overwhelmed with it all, and just focus on one issue at a time.
    Is there a specific order of issues we should be focusing on.

    I couldn't get rid of candida, and then I read you cant if you have heavy metals as this needs to be treated first. I also read that there is no point treating mitochondria unless you do methelyation first, is this right?

    In terms of sleep, hormones, infections/immune, POTS, heavy metals, candida, nutrition, mitochondria, methylation, is there an order that we should follow?
    Am getting desperate, scared of declining further.

    Angel x
     
    rosie26 likes this.
  2. Keela Too

    Keela Too Senior Member

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    Hi Angel, I too am interested to find answers. I think it seems just now that there are no answers yet. Like you I am (mostly) following Dr Myhill's protocol, but it has had little effect for me and I am continuing to slide. This is hard emotionally as I find I'm not only dealing with the grief of the latest loss but also the concern of how I might cope with future losses....

    We all need answers soon! And I have only been ill 18 months!! A newbie compared to many.
     
    rosie26 likes this.
  3. Beyond

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

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    It is like chasing your tail in an never-ending cycle isnt it. This is what I have gathered so far:

    If you digest/absorb poorly the food and have an inflammed GI tract that is where to start. However, it wont heal completely if you have adrenal, thyroid or methylation (genetic and/or toxic block) troubles. But is a start if you are certain you have these kind of problems. If you have some kind of hives, eczema, you are enviromentally sensitive, have tons of food intolerances, you are malnourished in terms of a lot of vitamins, antioxidants or aminoacids that is leaky gut. IBS overlaps with leaky gut in the sense that the treatment is similar and they are often comorbid. In this forum there is good info about treating leaky gut. For candida the user Gestalt has a nice thread recently created.

    Adrenals need to be adressed before thyroid. For that I will try the protocol explained by the user Athene in her adrenal thread. Healing adrenals will start up your detox ability. Detoxing with adrenal fatigue without adrenal support will be a bad idea, as the chelation guys know.

    I have no idea where goes methylation, for some people is the most important part, but you need to make sure if you even need it. I think I need it because I have genetic mutations, I am somewhat autistic and I got poisoned with aluminum. High Iodine therapy (because it cures/improves hypothyroidism) and methylation would be my choices for detoxing metals, and for mercury and lead Cutler chelation is unsurpassed.

    Note that I am not even talking about Lyme or chronic infections. I dont have that so I havent researched but these are as important as the others above. Is important to note that as pathogens die they release heavy metals. Autoimmunity comes from leaky gut, heavy metals and chronic infections (including intestinal pathogens). Maybe something else, I am just an amateur o_O
     
  4. brenda

    brenda Senior Member

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    Hi Angel

    I think that it has to start with diet. Once you get a baseline with that and have reduced some symptoms and know that what you are eating is encouraging healing, you have a better basis and if you don't get to that point you just keep going round in circles.

    I know we all have different sensitivities, but its no good cutting out stuff then leaving in some stuff that is not optimal nutrition. So I believe in using so called superfoods like chia seeds, barley grass etc. which give a natural source of important nutrients

    My own findings have been that whole gluten free grains with pea or hemp seed powder for extra protein to add to beans while cutting down on animal fats with no dairy, cutting right down on fruit and eating plenty of nightshade free veggies, has given me this baseline after years of experimenting. My body is healing with good signs ie blood sugars down hbp down and cholesterol down. I am taking vit c and magnesium every day and building up on methyl b's with other things taken whenever I remember in small amounts. I have an overload of mercury but want to get general health up before I do anything about that and my Lyme.
     
    Beyond likes this.
  5. Beyond

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

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    Yeah diet, juicing all the healthy veggies and the proper water would be the base
    (spring? distilled? reverse osmosis? that is personal choice). Diet is very tricky and individual, the chia seeds gave me more intestinal inflammation, even while I let them sit in water until they created a glue. I havent even found the proper diet for me, because the healthiest ones (paleo etc) make me get even more underweight so I really need to carefully plan what to eat with the leaky gut diet and that sucks when you are in zombie state. Like, I have to go the herb shop to get coconut oil or elsewhere and cook my own food as my mother doesnt buy a lot of this alternative stuff in the supermarket,
     
  6. brenda

    brenda Senior Member

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    Beyond that sucks about chia seeds as they are sooo good.
     
  7. Beyond

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

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  8. ukxmrv

    ukxmrv Senior Member

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    I's start with the symptoms and then try to treat them if possible. My experience was that diet and things relating to diet had no beneficial effect at all so I wouldn't try that again.

    Also candida. No amount of trying to treat that ever made any difference.

    If I was to start again I'd look at my history first of all and see if there was a trigger or how it all started. I'd then make sure that I'd had all the tests to rule out other diseases. To do this I'd read up on the tests Dr Hyde would do and all the exclusions in the original CDC CFS paper.

    I'd ask myself how likely it is that I have CFS or CF or ME and be brutally honest. Then I would try to find other patients with the same onset and the same set of symptoms and see what has helped them.

    After that I would write a list of symptoms in order of severity and brainstorm trying to treat these.

    Hope this ramble helps. It was written for myself and I really appreciate that you have probably done all of this.
     
    JBB, Hanna, justy and 2 others like this.
  9. Daffodil

    Daffodil Senior Member

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    if I were starting to treat now, I would just go to see dr. demeirleir. that's it....no wasting time with other things. he practices in Belgium but will practice in Reno soon too
     
    JBB, SOC, rosie26 and 3 others like this.
  10. Anjikun

    Anjikun

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    Hi all. I looked at this thread because I have had the same issue as Angel (too overwhelmed, where to start?), but honestly, reading this thread is even more overwhelming for someone in that situation! There is just so much out there (methylation, adrenal, virus, gut issues, this that and the other thing--help!), and when you are fatigued by any type of effort it's just so difficult to even get the information, much less act on it. For example I know there are certain supplements I can try, but I just cannot remember to take supplements consistently for the life of me!

    So anyway, I thought I would just let you know Angel (and any other overwhelmed souls out there) what I have decided to do so that I have something workable to focus on. I made a document on my computer called "CFS Action Plan" and it is a VERY short list. Here it is:

    1-Focus on pacing, making sure to include activities I find stimulating (art/drawing, in my case)
    2-Basic lowish-carb Paleo diet (not getting too obsessive about it, but no carb bingeing!)
    3-Establish basic exercise plan of very light aerobic activity (light swimming and aquafit, in my case, with a bit of restorative yoga)
    4-Establish a basic supplement program based on various sources and stick to it.

    It doesn't seem very ambitious, but if I am able to actually pull it off consistently that will be MAJOR progress!

    If anyone else is going for a similar approach let me know and maybe we could message back and forth for moral support!
     
    justy and Beyond like this.
  11. Keela Too

    Keela Too Senior Member

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    Yes to all except No. 3 because I'm having to scale back on exertion just now... maybe one day.
     
  12. Beyond

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

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    Exercise is tricky. If you have adrenal and thyroid problems exercise is of no help and further depletes you.This morning I walked rather quickly half an hour or more and now (evening) I feel a heavy depression and physical weakness/malaise. My legs are heavy wtf. Slow walking for 15 minutes and yoga are cool but it all depends of how your adrenals etc are. I see it like this, as you heal you can do more. Is not as you do more you heal, although that could be true for some, don´t want to be dogmatic either.
     
    Hanna and Valentijn like this.
  13. Keela Too

    Keela Too Senior Member

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    As I understand it, it is ME that causes the problems with exertion and PEM, rather than any additional problems with adrenals or thyroids (which I understand can exacerbate problems).

    Anyway, my exertion levels are way down. To be honest, I don't do more than about 50 paces at a time. On average I take only about 800 steps a day (that's only about 320 metres in 24 hours). So anything like swimming is completely out.

    I think I'm probably now borderline severe and not happy with the direction things are going.
     
    Valentijn and justy like this.
  14. Keela Too

    Keela Too Senior Member

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    I agree totally with this.... hence the down scaling of my activities... again!
     
    justy likes this.
  15. Anjikun

    Anjikun

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    Hi Keela Too and Beyond,

    RE exercise, I too have had lots and lots of problems. In the past I have done weight lifting along with some aerobics and crashed big time. Then I started doing Iyengar yoga in a Level II class (which includes strenuous standing poses) and I was totally exhausted after every class and often the day after! Then I realized that I had never tried light aerobic exercise only, so I'm trying that, and I changed my yoga practice to restorative, easy poses only. So far, so good (just started though!). I'm finding that it helps lift my lethargy a bit. I think it's probably the effect of just getting my circulation going (oxygenating my brain), and it makes me feel that at least I am doing something to combat the deterioration in my level of functioning. Also there is a steam room (eucalyptus) at the YMCA where I go--that feels great!
     
    Beyond likes this.
  16. Anjikun

    Anjikun

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    I agree totally when you say that doing more (in terms of exercise) is not the way to heal. It's so frustrating that other people seem to get more energy from exercising. I definitely don't get an energy boost from it--I have to rest a lot in the afternoons.
     
  17. Beyond

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

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    Yeah, and about your list... I don´t find many things stimulating anymore :( I stopped drawing alltogether years ago. Except visualizing when I will be healthy and researching medical articles and success stories. And trying new things to improve my health, or the classical boost from the "new treatment that will cure me". I mean I still find stimulating some things I used to but just much much less stimulating than in the past. Anhedonia has settled for sure, maybe also as a coping mechanism with so much suffering and frustration.

    Moving at least the body a bit everyday must be good. Complete inactivity over long periods of time can only be detrimental for health.
     
  18. caledonia

    caledonia

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    I suggest starting with the gut. The gut contains 80% of the immune system. If you're not digesting well, supplements won't be either.

    A 4R gut rebuilding program seems to be the best way to approach it. When I get my research written up about that, there will be a link in my signature. But you would start with stool testing. The stool test will tell you what bugs you have and what will be the most effective herbs/meds to address them. I have links for the two best stool tests in my signature.
     
    maryb and Beyond like this.
  19. SOC

    SOC Senior Member

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    It's likely that people who benefit from exercise do not have ME or ME/CFS defined by the CCC or the ICC. They may have CFS defined by Fukuda or Oxford. I have to keep that in mind when I find myself suffering from that frustration. They can exercise because they have a different illness with different limitations.

    That said, my daughter had PEM (although less severe than mine) which seems to be gone now that she's "in remission". She is not completely cured -- she has immune abnormalities, hypothyroid, recurrent mild EBV infections, and low blood volume. She functions normally including recreational physical activity like day hiking. She is not encouraged to do deliberate aerobic exercise, though, because we know how bad it is for PWME. We still consider her to be a person with ME/CFS, just in remission or very well managed.
     
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  20. Anjikun

    Anjikun

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    Does "anhedonia" basically mean almost no drive to do anything that you don't absolutely have to do? I have been struggling with that a lot. Of course it's partly the exhaustion, but I don't know if that's the whole story. I recently spent an entire week just basically lying in bed for the better part of the day. But when there's absolutely no enjoyment in life it's very easy to get incredibly depressed. I used to take some art classes at a Visual Arts Centre but the last time I did that carrying the stuff back and forth to class every week (using public transit) triggered a major, major crash. So now I am taking an independent study session (3 private sessions with a teacher + a group critique session for basically the same price as a 12 week class). So I don't have to go every week, and the closer relationship with the teacher gives me the motivation to do the work!

    I used to go on the Internet for research etc. and read a lot, but now I cannot do that anymore. However, drawing/painting (in short sessions, sitting down) is stimulating without being too exhausting.
     
    Beyond and merylg like this.

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