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Mild, Moderate or Severe M.E.?

Discussion in 'General ME/CFS Discussion' started by JoanDublin, Jul 18, 2014.

  1. Gingergrrl

    Gingergrrl Community Support Volunteer

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    I agree with @NK17 and you may be able to order the tests from US Biotek and Genova Labs internationally (although I am not certain of this.)

    I tested negative for SIBO but positive for Leaky Gut and multiple extreme food sensitivities. I am currently treating these issues and it is making a huge difference.
     
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  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @JoanDublin

    This link may already have been posted but Genova has a UK branch. Look here.

    Sushi
     
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  3. JoanDublin

    JoanDublin Senior Member

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    Looking at their site, it seems that the Practitioner has to have registered an account with them because you need their reference code or something to order test kits? Can't see my GP doing that

    I'm just checking something easier this end. I emailed off an Irish place here today that provides the SIBO test. Waiting to hear back from them. I'm putting together a list of tests based on advice here that I will bring along to my GP and see what she can arrange. Our national health system is dreadfully slow so I will probably be better paying private for them (dont have insurance) but I will discuss it with the doc when I see her probably later this week.

    He also has two hospital appointments next week - one with the paediatric consultant who has been handling his case since 2012. Don't expect much to come out of that besides the usual which tends to be .."keep up the good work and see you in three months". The other appointment is for his eyes. He is profoundly colour blind and goes back every couple of years to check his eyesight for any changes. I suspect it will just be routine but he is saying that his eyesight has gone a bit 'blurry' lately, so at least we can check that out with an eye test.
     
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  4. JoanDublin

    JoanDublin Senior Member

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    Sometimes I think I am going mad. So here is today's shenanigans...

    I woke up at 5am and shuffled to the loo only to be met with a shout of 'Hey, I'm in here'! Whoops! Yikes!

    So the conversation goes like this: 'Sorry about that', says he.... 'No worries' says I, (heart thumping out of my mouth with the fright of the shout - never mind the fact that I lose the breath I have - COPD ain't a picnic!!)..... 'I'm here over an hour' says he, 'my first enema didnt work again'. 'Oh dear', says I, 'So you had to do another one?' 'Yes'. says he....stating the obvious....

    'Ah thats a shame' says I.......'Carry on, I'm just heading to the downstairs loo' (hobbles downstairs in agony cos my Lupus/Fibro is really acting up lately) .......

    Headed into work for a few hours shortly after. Came home at 3pm. He is, as normal, still asleep. I eventually roused him at 7pm. About 30 mins later he 'woke' up. Surprisingly he came down a half hour later looking quite chirpy, relative to the last few weeks,

    Me?

    Oh Gosh maybe he's cured....

    Someone hit me over the head......
     
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  5. JoanDublin

    JoanDublin Senior Member

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    Sorry about the last post. Bit of a moment of madness.

    Had appt with GP today and after an hour long discussion she said 'I'm really not sure what other tests would help as I'm now convinced he has ME in a way I wasn't before'.

    This, after a lot of gentle educating by me and painting a 'picture by numbers' for her etc. Some progress I guess in that two weeks ago she had given me a book to read about the links between trauma and chronic fatigue syndrome...

    So at last we have a common starting point.... I'm now going to take a few days breather and see how I might progress this eureka moment she had....
     
  6. JoanDublin

    JoanDublin Senior Member

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    Ps. She is currently researching Kenny DeMeirleirs tests...
     
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I doubt if she will be able to find anything current. The current stuff is on this forum though.

    Sushi
     
  8. taniaaust1

    taniaaust1

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    That's a huge change :) and obviously have a doctor where who is educationable too, a rare thing!!!
     
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  9. taniaaust1

    taniaaust1

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    Ive got in with doctors before who I'd been told werent taking on new patients. Doctors under certain situations still do. Ive twice got in with doctors who werent taking on new patients due to my situation eg a very severe case, a child, or as only a temporary thing eg one doctor who wasnt taking on new patients was going to see me as a once of thing when I was in a different country.

    Its always worth someone giving it a go.
     
  10. NK17

    NK17 Senior Member

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    @JoanDublin I'm so happy to hear this good news about your son's GP.

    I'm thinking about you two :hug:.
     
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  11. taniaaust1

    taniaaust1

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    None of those things worked on my bowels either when they stopped functioning (I dont think I was getting peristalisis) with the ME. I ended taking the highest dose of three of those things (actuallly with the senokot, in desperation I ended up taking double the highest recommended dose without any affect), and taking them all together and my bowels still wouldnt respond!! Even if my bowel motions were softer, I still couldnt go! That's when I specialist finally came up with putting me onto Espom salts for my bowels, to my amazement that did trigger off my peristalisis.

    Thou glycerine supplements did nothing at all either for me (I could do three of those with no affects at all), another kind of enema called Microlax did work for me some (sodium citrate, sodium lauyl sulfoacetate and sorbitol combo), thou like your son, I often would have to do two or on occassions 3 enemas for even this. (It really sounds like your son has exactly the same kind of ME bowel issue as I had).

    Unfortunately Epsom Salts (Magnesium Sulfate) do taste discusting (I used to gag while taking it) but I still did that that as the alternative for me was having to do multiple enemas which just arent pleasant either, so on this ground maybe your son would be willing to try Epsom Salts instead. Note make sure its food grade (many the pharmacies sell arent are are just for the bath). One food grade Epsom Salt brand is the Gold Cross brand. (Faudings Epsom salts arent food grade).

    How my doctor had me start this was to take a part dose of it every hour till my bowels responded (he needs to drink a lot of water with it), I think I ended up going double the recommended dosage in total at first). I think the amount he had me take was 5g doses every hour.

    Once I had a response. He had me stay on that total amount I'd had to take for a week I think it was (maybe it was just for several days?) He got me to stay on that starting amount for a little time to like completely clean out my bowels and getting things used to moving again. (It wasnt pleasant and when my peristalisis was triggered on this, I even ended up with some diarrhear and it also can cause a heat feel around the anus.

    Then after a week I cut it back to an amount which just had me go once a day (he said that was very important to go once a day if one had this kind of issue, keep the movement up and to increase a little if one missed a day of going).

    To may amazement this bowel protocol of using this to go once a day after the initial starting period, ended up fixing my bowels (unless my ME symptoms shifted?). I was on the Epsom salts (no more enemas!) for probably 4-6mths and then didnt need them any more at all (I now only need to take about once every couple of months and I never had to do enemas now). Im so grateful to that bowel specialist or I believe I'd probably still be on enemas.

    Neither of those things helped me at all. I drinking a cup of prune juice daily and eatting prunes on top. No affects at all on my bowel issue.

    That I found happens even more if one wasnt going daily and then did something to try to stimulate.

    Anyway, I strongly suggest you try out the Epsom salts with your son (note it may be uncomfortable at first esp in the first few days of clearing out any built up stuff in his bowels (stuff those enemas arent reaching) but it may be far better then enemas.
    ..................

    He needs more done about his sleep issue. Its extremely important to treat sleep issues in ME. Im wondering has he tried the sleep aid (it should be available over the counter and not on prescription) doxylamine succinate in wee doses.

    I tried tons of things for my severe sleep problems I used to have and hardly nothing at all helped. I had with the ME 3 different sleep issues going on (none of the Dr Sarah Myhill sleep suggestions worked for me except melatonin which only helped my sleep issue by 1-2 hrs so it was still severe when it was at its worst).

    I ended up having to be on a cycling sleep program (due to the drug intollerance nature of some of the things I had to take for sleep) of various supplements and drugs of 3 different things. Without these things, there was no way I'd go to sleep before 6am (my non treatment time to get to sleep used to be between 6am-10.30am).

    One of the things I used to take for sleep which was helpful was doxylamine succinate (many of us find it helpful, its actually thou not on prescription, its been found to be more sedating then benzos).

    Note thou it is a common sleep aid and many do take daily, I personally think its important to not take all the time as I found I did build up tollerence to this drug and need to up my dose within 2-3 weeks. So I went to using twice a week only as part of my total sleep treatment stuff and didnt develop any further tollerance to it. (I wasnt worried about the tollerance that I stopped getting any worst by limiting how many times i took per week as the starting dose which worked for me was only one 8th of the recommended dose of this so it just meant then that I was only taking a quarter of a pill a couple of times a week instead of an 8th of a pill daily).

    Note. how little I started off taking (an 8th. eg a crumb of a pill or a quarter of a pill of anything is my normal starting dose of anything). People who have ME should be very wary when taking anything new and should start out with tiny doses when trialing anything (this certainly helps to avoid bad drug experiences). We often can get good affects for something at very tiny doses too.
     
    Last edited: Jul 25, 2014
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  12. taniaaust1

    taniaaust1

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    Your son esp due to the severity of his condition and complications, Id say certainly has what I consider to be severe ME. Severe ME certain impacts greatly on the body eg you son needing enemas is one example. We can end up with many complications.

    You may want to consider even a wheelchair for your son as far as getting him to doctors go (to help him conserve energy) thou I do think with him being a teen lad, he'd probably resist that idea. Things like the light hurting his eyes, you need to make sure he's got darkened glasses.

    Really try hard to get his symptoms dealt with better as over time one with severe ME can get more and more symptoms and they truely will make life unbearable (and then things like depression, feeling suicidal cause one feels like one cant handle this, do kick in.. impossible to avoid if one gets bad enough).
     
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  13. taniaaust1

    taniaaust1

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    Doing that is very important and also could help his sleep some. I was extremely light sensitive. Moonlight outside at night would affect my ability to sleep. I ended up having my bedroom windows boarded up as blockout curtains werent enough as cracks of light go in and I needed my room pitch black to have any hope of sleeping.
    (before that I'd alfoiled the bedroom windows).

    This issue with light is a very common severe ME problem. Do consider about the light coming into the room from around the blockout blinds when you get them (some here have velcroed their curtains to the wall to get rid of the light from the curtain sides of their blockouts). Light when one is light sensitive isnt just hard on the eyes but hard on the head too.
    ......

    I think you need to sit down with him and have a deep chat on about all the things which could be changed in which would make his life better. He probably isnt wanting to complain all the time and may be possibly due to that not expressing everything he is currently needing done. Its hard when one has so many different needs to be constantly going on about them.

    Has your family considered eatting in his room with him (if he can handle you all being there without making him unwell). It must be aweful eatting alone (I know it would make me feel left out) knowing that his family is eatting elsewhere and he's too sick to be joining in. Even if one of the family just eats in his room with him.

    Really push to get all his appointments later in the day.
     
    Last edited: Jul 25, 2014
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  14. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @JoanDublin I am so happy for the new development with your GP and that is great news! Maybe you can print some tests from the other threads re: KDM or from the ME/CFS road map that @Hip created.
     
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  15. taniaaust1

    taniaaust1

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    I suggest to not be encouraging him to go shopping with you at all, shopping trips can be hard on even moderate ME.

    Save his valuable energy/level of health for possibly maybe an "important" outing, friends or family birthday or something. Those of us with this illness know that its extremely important to focus on the things which are truely important as far as pacing goes. (I dont see him currently in the position to have any energy right now to spare with his current level).

    With his current level of health, any outting out of the house should be a fun one for him (other then necessarily doctors appointments). Make it count for what he's having to give to put out to be doing it.

    Give him company he needs as much as possible in his own home.

    He may well already be doing too much thou it may not look like much to others who havent got severe ME. I wonder how much he is pushing himself out of guilt of not helping much, to just get that bin out.

    I have severe ME and it sounds like your son is doing worst then I current are. Just to get myself to the toilet is an effort for me. (I sometimes hold on for up to an hour as I dont want to go throu the effort of having to get up and just walk to the loo). Tiny little things become daunting efforts with severe ME.
     
    Last edited: Jul 26, 2014
  16. taniaaust1

    taniaaust1

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    light intollerance certainly isnt usually seen in behavioural issues, its common in severe ME thou. Having a non functioning bowel which doesnt even respond to normal laxatives isnt "behavioural" either!. Many with ME do not have documented physical symptoms due to doctors not doing the right tests!

    No doctor gave me a trigger point test when I had FM (actually that's not nowdays needed for diagnoses). I only had a Rhomberg test done on me after I'd had this illness about 9 years and only cause I ended up in hospital after a GP saw the state of my physical condition and called an ambulance as he was shocked by my abnormalities. Im STILL trying to get allergy testing done (after 17 years of this illness and having MCS).

    Its a huge judgement call to make that this lad probably just has behavioural issues when in all likihood he probably hasnt had the right kind of tests done for ME issues. Im struggling to believe that someone here just said that about this lad.

    I think my hope for change and more understanding for ME just went down another 10 notches with that post. If regular members of this board go thinking severe ME cases are probably psychological, what hope is there for us?
    ................

    has someone hacked xchocoholic's account? or using it???? Im struggling to believe that this comment came from there.
     
    Last edited: Jul 26, 2014
  17. taniaaust1

    taniaaust1

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    Something to be aware of is that ME can affect the eyes. This can have vision altering at times (more so when worst), it can be different from one day to the next. Due to the ME, some have been given glasses and then later found out they didnt need them at all or find their prescriptions can keep changing.
     
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  18. JoanDublin

    JoanDublin Senior Member

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    She is relying on hit and miss google searches so any clearer directions would be appreciated
    that is all really helpful info. Thank you so much for taking the time to post this. It's really very good of you. I am going to summarise all this and bring it to his Hosp consultant who we are seeing this Tuesday. I remember trying to get Epsom salts here in Ireland before but they have been taken off the market. I might be able to get them online though. Once again thanks a million! Sounds like you had identical issues re bowels and sleep reversal. He may have found his ME twin :)
     
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  19. RML

    RML Senior Member

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    Joan, I have been able to buy epsom salts here, but I use them in the bath. I am not sure if it is the type to be ingested through , perhaps that is what is no longer available.
     
  20. JoanDublin

    JoanDublin Senior Member

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    Ye
    Yes you can still get the bath ones but the pharmacist said you can't get the one you ingest any more. Sorry, should have made that clearer :)
     

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