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Completely lost

Discussion in 'General Treatment' started by alcurtis93, Jul 15, 2015.

  1. alcurtis93

    alcurtis93

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    I have had this illness now for 2.5 years. I'm 22.
    In this time, I've tried next to nothing (Gupta and Dr myhill supplements protocol). I've not had the funds, support or knowledge to know where to start or what to do. None of my family believe in the illness so have been unwilling to take me to doctors or help me try any treatments.
    I'm getting incredibly fed up with this scenario and I want to feel like I'm making progress by trying something. I've gotten worse as time has gone by and my activity levels have dropped off considerably. I'm now house bound almost entirely.

    My question is, where on earth do I start?! There are so many treatment protocols, so many supplements, so many drugs. My area has no clinics, no Dr myhill recommended specialists and no support for those with cfs. Any advice would be great. I'm feeling a little desperate
     
  2. Effi

    Effi Senior Member

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    hi @alcurtis93 so sorry to hear you're struggling. Here on phoenix rising we all know the illness is very real, so you're safe here :hug:

    Could you say where you are located? This way people from the same region might give you some useful pointers.

    Have you gotten any tests (blood etc.)? If not, a good way to start is the ME/CFS roadmap (by @Hip ). It's mostly to rule out any other (treatable) illnesses. https://sites.google.com/site/cfstestingandtreatmentroadmap/
     
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  3. alcurtis93

    alcurtis93

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    I'm from Cumbria in the north west of england.
    I've had blood tests at the the hospital and nothing was found.
    I must add that back in march of this year I changed my diet to completely follow Dr myhills and I also did a technique to block all negative thoughts and I had a period of maybe 3 weeks of feeling very very good. I was able to go cycling and drive again but I pushed very hard in this period and that's probably why I've crashed down again so hard. It was amazing to have this period though
     
  4. A.B.

    A.B. Senior Member

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    Unfortunately there are no easy answers. Acknowledging the uncertainty makes it easier to make the right choices in my opinion. And a systematic approach can eventually lead to some answers or improvement.

    If you can't help yourself, you're going to need help from your friends and family. If they don't believe that you're actually sick then you'll have to educate them - but first make sure that you educate yourself.

    Try to learn about ME, CFS, and various diseases that can resemble these illness definitions.

    Reading the IOM report would be a good start. It can also be used to convince friends and family.

    I don't know how much testing you have done but "blood tests" doesn't sound like a lot. You have given very little information about your clinical history or specific symptoms, or who diagnosed you and what other conditions were excluded. You should probably get a head MRI at least.

    If you want specific advice, you'll have to give us specific details.

    Once you have some support from friends and family find a doctor that can actually help.

    I also recommend managing expectation in regards to motivational "positive thinking" techniques that claim to be able to cure CFS.
     
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  5. alcurtis93

    alcurtis93

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    I have tried to educate with no result. I've lost all friends as they've moved away to go to uni and travel. I'm very much alone.

    I have IBS and chronic prostatitis which I've had since 16. Completely ruined my life until I managed to get relief from them and then started working. During this time I lost my girlfriend of 4 years, was under huge stress with the complex job I had and the exams I was doing. The gym in many ways helped to ease my ibs and prostate symptoms so I practically lived there. Did 50 miles a night on the bike and swam until I couldn't swim anymore. Basically exhausted myself completely.

    Had a holiday down to Cornwall and during that time I completely crashed. Bad diarrhea, couldn't leave my bed, complete exhaustion.
    It improved and I took some time off work and then started it back up again. I didn't feel well enough but I thought it was best. Did less and less hours until I stopped December 2013. Done nothing since then basically. No holidays, no friends, no going out.

    Main symptoms are exhaustion, panic like symptoms, feeling faint, foggy, intermittent oi symptoms but never actually passing out. Feeling poisoned and just generally very unwell and not with it.
     
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  6. Bansaw

    Bansaw Senior Member

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    If you're in England then why not pop over on Easyjet to see Dr.Meirleir in Belgium. The cost of the consultation is cheap, but, yes, the tests and supplements are expensive.
    If money is the issue, then all I can say is start with the healthiest diet possible since your issues may be gut related. Get some good probiotics like Kefir - this is cheap to make and if you can get raw milk, even better.
     
    Last edited: Jul 15, 2015
  7. mariovitali

    mariovitali Senior Member

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    @alcurtis93

    What kind of tests did you have?


    Have you tested for :

    -Hcy (Homocysteine?)
    -Urea
    -CRP (C-Reactive Protein)
    -DNA Mutations? MTHFR / BH4 / CBS / PEMT
     
  8. alcurtis93

    alcurtis93

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    I shall look at the Dr you mention. It seems daft that I should have to travel such distances to see a doctor. I've seen talk of tests costing £3000 which is very high.

    I'm glad religion helps you but it isn't for me. I only really align with Buddhism.
     
  9. alcurtis93

    alcurtis93

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    I've had crp I'm sure. Not sure of any others sorry
     
  10. Bansaw

    Bansaw Senior Member

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    As Effi says, you are welcome here. We know what its like to struggle. I'm in work everyday so people don't think theres much wrong with me so its hard to explain to them the fatigue I sometimes feel. As my Grandma used to say,"if you can eat, there's nowt much wrong with you" (She was a mackem from Sunderland, as I am). But of course, you can be eating well and be feeling bad.
    Since your symptoms seem to have a gut origin I would look at healing the gut first and concentrate on that.
    -Thorough Stool tests for Parasites
    -Finding out the identities of your gut bacteria population, see what good and bad bacteria are in there
    -Testing if you have SIBO (small intestine bacterial overgrowth)
    -Looking into an anti-inflamation diet which cuts out grains (eg: Paleo)
    -Getting some good probiotics (kefir can be cheaply made at home for example)
    -Testing for Leaky Gut (lactulose mannitol test)
    -Testing minerals to see if you are absorbing well

    So, basically, gut related.

    Can you get referred to some kind of specialist on the NHS who might do some of these tests for you? Gastrointestinal etc...? I don't know what specialists they have now.

    I saw a good doctor here in Charlotte, Dr.Lapp, who said Chronic Fatigue is trauma (stress) plus infection of some kind. Finding out what kind of infection you got (if you did get one) might be helpful. Did you go abroad for a holiday at any time...?
     
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  11. mariovitali

    mariovitali Senior Member

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    I see.

    Is it possible to have a DNA test such as the one from "23andme" or equivalent?

    Could you take the other two tests (Hcy, Urea) at the very least?
     
  12. Snowdrop

    Snowdrop Rebel without a biscuit

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    @alcurtis93

    I am so sorry to hear that you have to struggle with increasing disability from ME without any support.
    I can suggest something for you that is easy and cheap and may help you a little.
    Many people with ME also have Orthostatic issues.

    You can read about that here:

    http://www.dysautonomiainternational.org/page.php?ID=34

    http://phoenixrising.me/archives/23374

    The solution for OI or POTS is to take electrolytes. Many people have found that this helps them with staying upright for longer.

    As well, so many people have families who do not believe them. I think this is sometimes a defence mechanism because it is difficult for them to accept. If that's true than it means that on some level this group at least has an inkling that it's true. It then takes time for them to come around. I suggest that you take a long view and that you think in terms of them coming around eventually (for your own sake) and then feed them appropriate info slowly at moments when you think they might be receptive.

    There is lots of useful info here but I would suggest becoming more familiar first before sharing.
    ME is a rather complex illness and it takes time even for the sufferer to wrap their head around what is happening.

    Money is an issue for me also and I can only buy a few supplements now and then. For the foggyness since you are located in a northern climate (I was in your neck of the woods once--I visited Durham :)) you might want to consider a Vitamin D3 supplement. Vit D is not expensive and may help a little with brain fog. If you can afford to combine that with a quality Omega 3 fish oil you may get some improvement.

    But as desperate as you feel take your time. Don't rush into anything and try one thing at a time so you know if it is having an effect. This is easier advice than it seems because sometimes with ME things only help in combination.

    As for useful info to share with your parents at some point I've linked a few items for you to consider:
    From the US Institute of Medicine:
    Report brief: http://iom.nationalacademies.org/~/media/Files/Report Files/2015/MECFS/MECFS_ReportBrief.pdf

    Story of a young man with ME:
    Whitney Dafoe

    http://www.paloaltoonline.com/print/story/2015/07/10/living-on-empty

    Research facility at Stanford University studying ME:

    Stanford University (US)

    http://med.stanford.edu/chronicfatiguesyndrome.html

    And recent research findings in ME from Columbia University:
    Immune signatures found in blood point to distinct disease stages

    http://www.mailman.columbia.edu/new...e-chronic-fatigue-syndrome-biological-illness

    Please rest, that is the best thing to do regardless of what others might say.
    best wishes,
    SD
     
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  13. msf

    msf Senior Member

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    Hi Alcurtis,

    I fell ill at the same time as you, but I'm a bit older than you. I am also from the UK, and like many people there I had to go to Belgium to see KDM to get a diagnosis. It turns out that I picked up a nasty bug while I was teaching in Vietnam, and still haven't got rid of it. Hopefully with the treatment I will be able to get rid of it soon. I think it's quite likely that some infection was behind your sudden decline too, and I think KDM is much better than finding these than most Gastroenterologists in the UK (I took my Belgian results to the NHS Gastro, and he still couldn't see what the problem was!).

    The cost of the tests is expensive, but only if you agree to all of them! You can ask to only have some, since KDM is aware that money is a problem for people with ME. Treatment can be expensive, but I think that it is generally more expensive for those who have been ill for longer, since they generally have more problems. If, like mine, your treatment is mainly oral antibiotics, this should be cost in the hundreds of pounds rather than the thousands.

    Anyway, I would suggest you try to get an appointment with a UK Gastro (just in case they are able to find anything) and while you are waiting for the appointment (I had to wait about 8 months) you can decide whether to see KDM if the Gastro doesn't find anything, and start trying to scrimp some money together if you do not have enough (I was lucky, in a way, since my father, who also had ME, had already died and left me some money by the time I got it).
     
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  14. Beyond

    Beyond Juice Me Up, Scotty!!!

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    I would look into adrenal fatigue, from what you said about the "illness" starting after some years of serious stress and overexerting. Leaky gut is a biggie too. But these are just very common problems associated with "CFS", and with almost all chronic diseasesin fact, but one could have anything really, chronic infections, lack of E.Coli, Growth Hormone or what have you.

    Cortisol saliva, dhea in blood, and then IgG food intolerances are all you need to discover whether you have "adrenal exhaustion" or "leaky gut" (stupid names actually, as much as CFS is...)

    I was in Cumbria last year, did a lot of cycling, overexerted and ended waking up 5 times per night and getting diarreah. I freaking loved your countryside man, cycling around that beautiful landscape was heaven, and I ate wild berries and "stole" a couple of apples with each ride lol Cumbria is a great place to bike! You get great views and free snacks. Some people have an unintelligible scottish accent though haha.
     
  15. ahmo

    ahmo Senior Member

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    @alcurtis93 Since you're working w/ Myhill's protocol, you might want to begin learning about methylation. There's a good Methylation for Dummies in my signature, and many vids in Caledonia's sig. Welcome to pr. I was able to recover myself significantly thanks to the help here.:hug::balloons:
     
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  16. AndyPandy

    AndyPandy Making the most of it

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    Welcome @alcurtis93! I hope you find the care and support you are looking for. Best wishes, Andy
     
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  17. Mya Symons

    Mya Symons Mya Symons

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    alcurtis, welcome. The Pall Protocol has helped me a lot, but it is not for everybody. Some people have bad reactions to it and it can get kind of pricey. If you try it, it's best to try one supplement at a time. This way you can make sure you don't have any reactions and if you do, you will know which supplement caused it. You can find it at nutricology.com.

    I understand about not being able to see the right doctors. I live in BFE and have not been able to afford to see any speciality doctors either. It is frustrating.

    Are you a gamer by chance? My son, who is 20, goes through periods where he isn't feeling well enough to go out. During those times he enjoys gaming and it gives him a chance to connect with others. I know it is sometimes hard for some people to do this with ME or CFS because of the overstimulation. If you're able, I thought it might be something to try.

    I am sorry you are going through this. It is especially difficult when family doesn't understand. This is a good place to be. Everyone here is very understanding, helpful and has been through similar experiences. If you ever need someone to talk to, please feel free to send me a message.
     
  18. alcurtis93

    alcurtis93

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    Thanks for the advice. I could try see a gastro. I'm going to to to my GP for the first time in about 9 months next week so I'll discuss it all.
    I've never been abroad so it isn't that.
     
  19. alcurtis93

    alcurtis93

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    W
    Where would I get these tests you mentioned
    Where would I get those two tests you mention and what would I do with results of the 23andme?

    Thanks for replying
     
  20. alcurtis93

    alcurtis93

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    Cumbria is stunning. Just wish I could get out and see it like I used to! :)
     

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