1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Leptin
Andrew Gladman reflects upon the recent IACFS/ME conference and the buzz surrounding a small molecule, leptin.
Discuss the article on the Forums.

Please help, I'm in a predicament

Discussion in 'General ME/CFS Discussion' started by KateUK, Dec 27, 2013.

  1. Min

    Min Senior Member

    Messages:
    1,087
    Likes:
    901
    UK
    I wonder if Katy's mother is in a position to help care for her? I am so sorry she is so very ill, and think that hrr family putting everything in writing and sending it to the relevant health professionals and MP might be helpful. The Countess of Mar sometimes helps individuals.
    taniaaust1 and peggy-sue like this.
  2. Countrygirl

    Countrygirl Senior Member

    Messages:
    772
    Likes:
    430
    UK
    Katie has the most amazing friends! When she improves, she must share her secret with the rest of us. Mine mostly dropped off the planet when I became severely ill. I think we should give you both honorary membership of the ME community. There is no higher honour and is very rarely deserved, sadly.
    taniaaust1, peggy-sue and Min like this.
  3. xrunner

    xrunner Senior Member

    Messages:
    536
    Likes:
    191
    @Nika

    I used to have some of these reactions to foods (but to smells too) and would go into a fit with tachycardia, breathing difficulties, shaking, etc . I was then diagnosed with MCS among the other things.
    The impression I had from reading the post, was that it all seems more a problem of sensitivity and intolerance (i.e. immune reactions) affecting the sympathetic nervous system (heart rate, breathing, bowel movements etc), rather than classic digestive issues which the Dr should have picked up.

    If it is food sensitivities, the only treatment that can immediately help is immunotherapy, through a vaccine that neutralises reactions to those foods one is intolerant to.
    If Kate has already been at the Breakspear I wondered whether, in the past, she had testing for sensitivities and related immunotherapy.
    I'd get in contact with them and ask for advice. I do not know of anybody else in the UK who understands this kind of issues and can deal with them (the NHS is useless in this area).
    http://www.breakspearmedical.com/files/antigen_vaccines.html
    In any case, I hope Kate can soon find some answers and help.
    taniaaust1, beaker and Countrygirl like this.
  4. TigerLilea

    TigerLilea Senior Member

    Messages:
    147
    Likes:
    178
    Vancouver, British Columbia
    If Katy is that ill, why doesn't someone just bundle her into a car and drive her to the ER?? My sister almost died last November due to starvation due to an unknown cause while waiting for tests. It turned out it was one of the prescription meds she was on that took away her ability to eat or drink. From the sounds of it, Katy is too ill to be making good judgement calls right now and needs someone to be making decisions for her. If my sister hadn't been found when she was, she would have been dead in another hour. Someone needs to get Katy to the ER - NOW!
    barbc56 likes this.
  5. Nika

    Nika

    Messages:
    6
    Likes:
    16
    Hi all. Thank you for your replies :)

    Does Burrswood have the equipment necessary for Katie to have a CT scan and various other tests (endoscope, etc)? I looked over the site and can't find anything. Looking further afield could be an option, but the short drive to Broomsfield is already daunting enough with her in this state.

    Kate was a former patient at Breakspear, 5 years ago, under Dr Goyal who was helping to treat her moderately severe ME. He has since left Breakspear but he's been contacted to ask if he might consider helping/ treating from a distance, perhaps via a home visit, or by us couriering bloods across.

    A home visit from Breakspear would be ideal, but unfortunately it isn't inpatient.Still, we may try to look into that further if Goyal doesn't pan out.

    Additionally, Kate's mother has wrote to the team of practitioners who sent us the doctor today who recommended psych consultation - explaining the situation clearly and addressing the issue of administering a private room, or even a side room in the hospital.

    So things are being done. In the meantime, we can only hope that Kate will remain stable enough at least until Monday, which is when they will send over the head of the GP team, who we asked for in the first place.

    I will keep you informed, once we get to that stage. I can only hope it won't affect her too harshly and that the results won't require surgery, as all sorts of problems will accumulate there with the general anesthetic.

    Peggy-sue, the leaflet is useful, thanks. I've also been referenced to this site which outlines guidelines for hospitals and carers. Its been useful to me: http://www.hfme.org/hospitalandcarernotes.htm

    Aciendaze & Radio, we have tried for IV feeding at home and didn't get anywhere. District matron said it wasn't possible, social services said the same, and so did a private nursing company. I agree, its unbelievable. Only now that I'm witnessing it first hand has it truly started to sink in. The way people with ME are treated, not only in the UK but especially in the UK, is nothing short of barbaric. I cannot understand how the general medical response in this day and age is to ignore it.

    Wayne, we've looked into castor-oil packs and have bought all the necessary things for them but have yet to give them a try as Kate's been so sensitive to touch and movement and so critically ill. I will ask her if she's up to it tomorrow though - she's sleeping now. Had a hell of a day.

    Min, Kate's mother lives far away in Oxford but she comes here for a couple of weeks at a time when she can. She has offered for Katie to move in with her many times, but the one time she did (almost exactly a year ago) was when she crashed. Her gut 'broke' and she's yet to recover. We suspect it might have been the mold toxins in the walls, or perhaps the drastic shift of environment after having been in one place for so many years. Unfortunately, she wasn't aware of the repercussions to be had or she wouldn't have gone at all. I am taking care of her for now, in her own apartment - which is small, so more manageable for her.

    Thank you CG. I feel blessed to know Katie - she is the loveliest person I know and has helped me through so much herself. I am only returning the favour. I just wish there was something substantial I could do.

    Thanks, that is what we're trying to look into specifically with Dr. G. I will let you know if things progress.

    And TigerLilea -- if only it were that simple. Taking Katie to an ER now would probably kill her. This is a cruel illness; that amount of exposure to so much when she's in such a critical state would have horrendous, possibly irreversible aftereffects. It is exactly what we are trying to AVOID.
    Last edited: Apr 8, 2014
  6. maryb

    maryb iherb code TAK122

    Messages:
    2,738
    Likes:
    1,758
    UK
    @Nika
    Just to say I got nothing from my GP's either - I hadn't been able to eat or drink for 3 days, my husband called the emergency doctor, he said I was dehydrated - was it radio? who said the medics take this situation seriously. I was admitted to hospital and put on a saline drip, I had a small towel I used to cover my eyes and cotton wool in my ears, my husband tried to stay with me for as long as he could at a time, we had the curtains drawn around the bed and put the lights out, the nurses didn't like that but got fed up of us and let us carry on. If I'd known about private rooms that would have been much better - If Katie gets too bad calling a doctor out may be your only option, don't mention ME, just say the symptoms as they are, the emergency doctor may not have access to her notes, and doubtful the hospital will.
    From what you say I would suspect Katie's mum's house is not a good place for her, I became much worse after immunotherapy and ended up in one room in my house for 6 months, I did get better and she can too.
    You are truly the best a friend could ever be.
    taniaaust1, beaker, justy and 6 others like this.
  7. Radio

    Radio *****

    Messages:
    453
    Likes:
    233
    Radio: Everyone in this forum should be researching PST Deficiency as a possible related cause of food intolerance as well as dysbiosis and sulfur reducing bacteria.


    Last edited: Apr 4, 2014
  8. Radio

    Radio *****

    Messages:
    453
    Likes:
    233
    Radio: Sulfate reducing bacteria can lead to sulfate insufficiency. These bacteria use up our vitally important sulfate, and release a toxin known as hydrogen sulfide. Sulfate is also needed to prevent intestinal permeability. (Leaky gut).


    Last edited: Apr 4, 2014
    maryb and Countrygirl like this.
  9. peggy-sue

    peggy-sue

    Messages:
    2,495
    Likes:
    2,867
    Scotland
    I wish I could do a lot more than give a link to a leaflet. But it is produced by recognised MDs in the field - Dr. Shepherd and Dr. Cheney, so might get some recognition by the hospital.

    I have been taking a high dose of VegEPA from almost the start of becoming ill, (It contains pharmaceutical grade EPA and evening primrose oil). I wasn't sure if it helped or not, because I was only really developing the illness then, and it takes 3 months for your body to get properly saturated with it.

    But I have discovered now, on two occassions when I have run out, how very, very much worse I get when I don't take it. I will not be allowing myself to run out again, not now I know how much it helps.

    The last time I ran out was only recently - and within a week, I was wearing an invisible lead suit - a symptom I've not had for 7 years.

    A week back on it and that lead suit has vanished too. It is such a relief.

    BUT I don't know if Katie would tolerate it or not.

    EPA is the form of omega acid the body can actually use, it's already had the first stage of metabolism "done", so it is really easily absorbed and used by the body. The pharmaceutical grade purification means there isn't any trouble from contamination from pollution or Vitamin A, high doses are safe.

    It's the kind of fat that is needed for the construction of cell membranes - the very best kind for the membranes.

    Getting your cell membranes to be of the best construction possible can only help how well and how efficiently they work.

    I'm a great believer in taking EPA; I've got my own personal evidence that it really does work for me and in a very big way.
    I have also, when not having the right stuff, taken one which had DHA in it as well - and I got sicker on that. DHA doesn't do me any good at all.
    I've seen EPA in lists of things folk take, and it's not been rated desperately highly. :whistle:

    However, those lists might have been subject to bias, I'm pretty sure they were produced by some "official" organisation, the kind that concludes that CBT and GET be the highest rated.
    It's not cheap either, so a difficult thing to recommend to somebody struggling to survive on low benefits.
    Countrygirl likes this.
  10. maryb

    maryb iherb code TAK122

    Messages:
    2,738
    Likes:
    1,758
    UK
    Off the top of my head

    I would eliminate any processed food, gluten and dairy

    Juiced carrots
    sips of bottled water
    Pudding rice soaked and boiled - with pea protein makes a complete protein.
    Coconut Butter - if katie can tolerate cocoa - mix melted CB with cocoa and stevia, leave to set in fridge. high protein and fat which she needs.
    I

    I lived on gluten free toast for days on end - with Pure sunflower spread. I mostly sucked it and swallowed.

    Also rice with chicken, turkey and lamb. I could tolerate brocollii, when cooked mashed with a little olive oil. I didn't have the energy to chew.
    Countrygirl likes this.
  11. barbc56

    barbc56 Senior Member

    Messages:
    1,286
    Likes:
    659
    I think the main priority right now is to get Katie to the hospital ASAP and not suggest treatments, at least at this point ,which might make her worse.

    Last weekend I ended up in the ER from dehydration. It caused an irregular heart beat which was resolved pretty much with the IV but had to stay overnight in the hospital for further heart tests the next day. I am still recuperating from that ordeal.

    My point is that I thought I was drinking enough fluids and the symptoms happened so quickly and was so very sick, it was scary. I can't even imagine how horrific this ordeal has been for you.

    This is a medical emergency and appears to have been for a long time.

    Going to the hospital may be hard, very hard but in the long term it may be worth it. Your friend going with you can help keep you as comfortable as possible.

    A doctor can't ignore things like dehydration, whatever the cause.

    I can only relate what happened to me and am not a medical professional.

    Katie I wish you the best and you deserve to feel better.
    peggy-sue, Valentijn, beaker and 3 others like this.
  12. Min

    Min Senior Member

    Messages:
    1,087
    Likes:
    901
    UK
    taniaaust1, peggy-sue and barbc56 like this.
  13. anciendaze

    anciendaze Senior Member

    Messages:
    853
    Likes:
    856
    IV feeding is not what I'm suggesting, only directly treating dehydration. This may allow her to eat more normally. If she needs to be fed through IV she needs to be hospitalized. That is a situation requiring constant nursing care. It is also a time-limited solution, as it can't continue indefinitely.

    If you can find Dr. Paul Cheney's description of what he went through in his case of idiopathic heart failure, losing the ability to eat as cardiac output dropped, finally being reduced to eating nothing but the pineapple he could tolerate, it sounds similar. He ended up needing a heart transplant, but I'm assuming some doctor would have noticed heart failure, if this were the case here. This resembles severe hypovolemia, like a person on the verge of going into shock after an accident.

    (Perhaps I'm thinking of this because of that Army experience. They are heavily into the major trauma business and dealing with shock, both causing and treating.)

    Even if she must be hospitalized this would be a reasonable thing to do before moving her.

    I could easily be wrong, but the suggestion I'm making would almost certainly do no harm.

    Primum no nocere
    maryb, justy and barbc56 like this.
  14. rosie26

    rosie26 Senior Member

    Messages:
    958
    Likes:
    1,127
    NZ
    Sip on lemonade drinks (the fizzy kind that has been allowed to go flat) might help to get energy to the muscles. If Katie is not eating well she will be lacking sugars. I did this as emergency measures. Someone tell me if that is wrong for any reason as I would hate to give detrimental advice. I just found it very helpful in the severe bedridden years and in the severe relapses.
    peggy-sue likes this.
  15. Advokate

    Advokate

    Messages:
    10
    Likes:
    21
    UK
    Hi everybody. I'm Kate's other friend, mentioned in the original posts. Sorry it's taken me so long to get around to creating an account, here - I have spent a lot of time reading and have found this forum very helpful.

    We're not overly concerned about dehydration. Kate is drinking quite a lot of coconut water - she probably drinks more than I do. I do realise that the body requires food to retain fluids, but I feel the more immediate problem is calorie intake.

    Research has led me to believe we are dealing with a total food sensitivities, whereby an immune reaction to food in the gut creates inflammation, pain, and various other symptoms affecting the whole body - much like a severe coeliac -but where an elimination approach doesn't help. It seems this is quite common in very severe sufferers and those who experience MCS. @xrunner - your experience appears to be the closest to what we're dealing with, here. I'm glad you mentioned immunotherapy and will be interested to hear Dr Goyal's thoughts when he calls, next week.
    All of that said, she clearly needs tests to rule out a blockage of some kind. I fail to accept that the system cannot help a person to manage the very tests they themselves consider 'urgent'. (A gastro CT was considered urgent at the end of last year!)

    PALS have now been contacted and a lot of noise will be made if she is not offered some form of assistance in the next few days.

    Meanwhile, I can promise you that Kate is capable of making decisions and that we will not let anything happen to her at home. If the situation deteriorates far enough, of course she'll be taken to A&E... but we are all aware that the associated stimulation and stress would be detrimental to her condition, and that's why we are appealing to her doctors to provide assistance in transitioning her to hospital quietly and gently, for tests and care. Who would have thought that was such a tall order!
    Min, SOC, Valentijn and 4 others like this.
  16. maryb

    maryb iherb code TAK122

    Messages:
    2,738
    Likes:
    1,758
    UK
    Glad to hear that Katie is drinking okay, that's a big plus.
    The secret is to find food stuff that don't cause the reactions she is getting. This is where I was several years ago, in my case immunotherapy triggered the massive reactions I suffered. But I would say don't let my experience put anyone off trying this.
    Rice, meat, carrots and frozen broccoli were my life savers.
    The only way to find out is for Katie to try different fresh food-stuffs.
    I don't eat anything processed apart from gluten free bread. I also drink rice milk now, nothing good in it really but if Katie can tolerate tea its passable as a milk substitute for a change.


    Its difficult to give advice when you don't know the person, I was in bad shape though and in addition to changing my diet totally had to also clean my environment up, changed washing powder, no sprays in the house - air filters for dust mites, got a cleaner. It all impacts on the body. I improved.
  17. Advokate

    Advokate

    Messages:
    10
    Likes:
    21
    UK
    Thanks Mary. We (Kate, her mum, Nika and I) have tried and tried to find things she doesn't react to... since July last year. However, it appears things that may not cause a reaction at first, soon begin to!

    At present, she cannot eat solid food at all - it just doesn't digest. Whether that's due to inflammation or a blockage is something that needs to be established, urgently.

    Juicing carrots caused an immediate reaction. Chicken stock worked a while, as did soup, but gradually became a problem. Last week, Kate was down to coconut water, pea protein and a bit of soy/dairy free chocolate. We did find a protein shake with a lot of nutrients and calories in, but it's non-GM soy based. Soy was eliminated, recently, as a potential trigger but as it apparently made no difference at all, she's back on this shake (with almond milk) to try to get some nutrition and vitamins/amino acids back into her. We have to pick our battles at this stage.

    Environment-wise, everything is cleaned/washed in bicarb, her sheets are hypo-allergenic silk, she wears a mask with activated carbon filter, has an air purifier in the flat... Would quite like to be teleported into the middle of a desert (speaking of which, I'm not sure the dust/smog that coated the SE earlier this week helped the situation at all).
    Min, Nika, justy and 2 others like this.
  18. anciendaze

    anciendaze Senior Member

    Messages:
    853
    Likes:
    856
    @Advokate,

    I'm relieved to hear that she is getting fluids, but I'm wondering how fast these are passing through her. The experiment of giving her IV saline solution, particularly if you are about to move her, would temporarily relieve hypovolemia. This can occur when the HPA axis (Hypothalamus-Pituitary-Adrenal) is messed up, which other indications suggest. The specific hormone involved is vasopressin or ADH (antidiuretic hormone). Homeostasis normally corrects for changes in volume, but a lack of appropriate secretion of ADH can defeat this. This is very commonly overlooked by conventional medicine.

    Because other mechanisms maintain concentration of erythrocytes (RBC) a drop in total volume can result in a drop in total mass of RBC and ability to transport oxygen to tissues -- without showing up as reduced saturation of O2. This causes cellular hypoxia without typical signs of hypoxia. The heart has to work extra hard to circulate the reduced number of RBC faster. Treatment for tachycardia can make the problem of hypoxia in tissues worse. This is not nearly as minor a problem as doctors are commonly taught.

    Since your NHS puts out guidelines telling doctors not to test "CFS" patients for orthostatic intolerance they are likely to miss even gross dysautonomia, and the autonomic nervous system is deeply implicated in what we are hearing. What I understand about her symptoms nearly all relate to excess sympathetic nervous system activity. Her gut is trying to reject just about everything offered. This no longer seems to be specific to any single factor, like celiac disease. To avoid substances to which she is now sensitive she would have to live in a bubble. It would be reasonable to suspect damage to the part of the nervous system controlling those responses. Her sensitivity to light and sound suggests infection, inflammation or autoimmune reaction against the central nervous system or peripheral nerves very close to the CNS.

    If your NHS is determined to use "CFS" as a diagnosis of exclusion they had better make a serious attempt to exclude serious conditions to avoid lawsuits for "wrongful death".
    taniaaust1, Min, Sidereal and 5 others like this.
  19. Advokate

    Advokate

    Messages:
    10
    Likes:
    21
    UK
    Absolutely, totally and utterly agree with you, and have thought this to be the case for a long time. But... what do we do? Who do we talk to? Sitting back and waiting for the inevitable conclusion without intervention is not an option, as far as I'm concerned.
    Countrygirl likes this.
  20. maryb

    maryb iherb code TAK122

    Messages:
    2,738
    Likes:
    1,758
    UK
    It seems you are doing so much 'right' with both the environment and the food, it must be so hard.
    That's what I meant about giving advice when you don't really know someone's situation.

    I think you may be right about the recent pollution - I had a different sore throat and funny taste in my mouth all week, I never put the 2 together until my cleaner came yesterday and said she had the same.
    How much more it affects us than healthy people?
    I hope now its gone the cleaner air will help things a little for Katie.
    Min likes this.

See more popular forum discussions.

Share This Page