Please help, I'm in a predicament

[Valentijn]

@KateUK - If you still have breathing problems when laying down, I recommend using a pulse oximeter to see if certain positions are worse for you than others.

I also feel like I can't breathe if I lay on my right side or my back or stomach. I'll wake up shaky and half-suffocated, and have a headache most of the day when it happens. I even managed to turn blue once

Anyhow, the pulse oximeter shows that my oxygen saturation drops to bad levels 30 minutes when I lay on my "bad" sides. No idea how bad it gets after an hour or more!

 

[anciendaze]

@KateUK,

Very relieved to hear from you. Hope I did not contribute to that problem with the doctors. My concern was based on several factors you mentioned, and I don't consider any problem which takes a large fraction of your normal body weight trivial. I've been there myself. As for the dangers of dehydration, I've learned about that by passing out. Waking up in the emergency department gets old fast.

Best Wishes

 

[KateUK]

Through my efforts to help this person I have seen how extremely dire the situation is in the UK for people with severe M.E.

Justy, I have experienced general dismissiveness and cluelessness before, but I've never been this severely affected before, and seen just how bad it is for myself. I'd heard horror stories but I cannot believe the way I was just treated. I'm terrified. I don't know what to do.

To update you to where I am, my deterioration continued. I shaved a little from my zopiclone dose and sought out meal replacer shakes, eventually finding one I could tolerate without pain. My light/noise/movement symptoms got more severe. I didn't make it to the CT scan. My GP wasn't willing to help me with getting to hospital, though she did refer me to a neurologist. I didn't get to hospital for fluids either, because my nearest general had a bed crisis, and I know I cannot cope with a busy area/corridor.

So instead, a friend of mine looked into booking me into a private hospital, so I could have a private room, and perhaps get the first tests done while receiving fluids over the course of a week (in an effort to make me stronger to be able to cope with the rest in time). She sought a neurologist with a good reputation who might have an understanding of my sensory issues to make this as easy as possible for me. The secretary of the one she found was very helpful and understanding. The neurologist would be able to coordinate tests easily because he worked with many other consultants. He would even visit me at home for my initial consultation. He requested a full history on paper, as well as a list of current symptoms. I felt hopeful!


On visiting me, he walked into my room, demanded to know why the light wasn't on and why I was in bed. He asked why I was refusing tests (can only assume this has come from my GP following postponing the CT scan). He refused to read the list of symptoms he had requested because it was 'pointless', glanced at the history and made a disparaging comment about 'so beautiful, you could frame it and put it on your wall'. He told me I was weak, that I wasn't in pain, and that my problem was my 'perception of pain'. He told my mother (who visited for the appointment) that he felt sorry for her because no mother wishes for an 'abnormal child'. He told me I'd been living in a darkened room for 11 years focused solely on how ill I was (I have only been this severely ill since July) and he wasn't interested in hearing anything I had to say. I was so shaken I didn't manage to keep my composure, I started to cry, and at one point, actually managed to shout at him. He responded with 'She's getting angry with me now. I think we are well enough to move into the other room.'

I can only assume he was trying to 'snap me out of it'. I don't know. But he was painting a picture that wasn't true, and was pushing the idea that I was refusing medical attention and had a psychological issue.

He said he wanted to refer me to 'the experts at Queen's' (which, for those not in the UK, was an inpatient CBT and graded exercise programme. It closed in 2011) but that he knew I'd refuse to go because I was 'a tough nut to crack with strong opinions about fatigue syndromes'. He refused to acknowledge that I'd done pacing/CBT (along with everything else along those lines) many, many years ago. I only got as far as telling him one symptom before he cut me off with 'I suppose you think you have a brain tumour'.

He didn't think there was any point in tests, and that he'd make a plan for me to get me five percent better to begin with, which involves getting up at 7am every day, getting some daylight, and (the only helpful part at all), having me visited by a dietician to help me get nutrition.


I seriously don't know what to do. I'm utterly shaken and stunned. I want to complain, but I know this is a battle that can't be won. This will have gone on my medical records and I'm terrified of where that might lead. I'm managing to take in about 800 calories a day now with the protein shakes and am drinking, so I'm not as desperate in that sense, but I'm still in a crisis ME-wise and my symptoms remain frighteningly intense. I need to improve, because there's no care for me in the general UK health system. As anciendaze asserted, my mind is not in good shape, my stress and fear are through the roof, and I'm certain that's hindering me even more.

I don't have any care, though I do have help with cleaning and shopping. My very good friend is helping me from a distance, she unfortunately lives at the opposite end of the country. She is currently looking into finding me a better GP. I don't know what to do, here. I'm frightened of the medical system. I don't feel I can trust them to help me or to understand my needs. I really feel like I need a doctor on my side!

I do still have a CT scan booked. I know I need it. I know I can't manage it without further deterioration. Catch 22 :/

I'll reply to posts when I have another window of energy. Once again, thank you all for your help.

 

[KateUK]

@KateUK,

Very relieved to hear from you. Hope I did not contribute to that problem with the doctors. My concern was based on several factors you mentioned, and I don't consider any problem which takes a large fraction of your normal body weight trivial. I've been there myself. As for the dangers of dehydration, I've learned about that by passing out. Waking up in the emergency department gets old fast.

Best Wishes

Thank you, anciendaze, and no, not at all. I wouldn't ever have anticipated that outcome. I expected to be admitted and having tests by now. Perhaps it was naive of me (I've stayed pretty much 'off radar' from the health service for a long time, aside from occasional 'reviews' from my GP).

Your posts have been extremely helpful to me. I hope I can talk more about them soon.

 

[justy]

Hi Kate. i'm so very very sorry to hear how appallingly you were treated. I had a very similar experience with a lung consultant who had me in his office in tears, he insisted that my long standing (pre dating me M.E by 25 years) and well documented lung issues (pneumonia 3 times in life, scaring on ct scan that he ordered, freuquent lung infections from 7 years old until a couple of years ago etc etc etc.) were a result of my having 'chronic fatigue syndrome' whereby I 'believed I was experiencing pain and fatigue' He then looked through my massive file at the hpospital and said I shouldn't keep having tests.

He said that I should no longer be given antibitoics if I 'believed' I had a lung or chest infection as they were 'only working as a placebo'

He also demanded to know why I had seen a cardiologist more than once, why I had been seeing the gynaecologist when there was nothing abnormal to be found.

I tried to explain calmly that I had been seeing the gyne because I had had cervical changes and required monitoring and eventually had an operation to remove cells. I explained that my last visit to cardiology was because my gynea had wanted to do my op under a general anaeshetic as the area to be treated was so extensive and because I had suffered from palpitations for many years they were concerned about the effect of the anesthetic. I also calmly told him that I had seen a cardiologist a few years before that as I had had a heart operation as a child and needed to be checked up on.

He ignored EVERYTHING I said and then claimed that he was only trying to help me and would write to my GP with his advice that I be given no more antibiotics. It was really awful.

I am just telling you this, not to upset you, but so that you can see you are not alone, we all, in our own ways battle on.

I am so glad you have been able to eat and get fluids in. Can you try and increase your calorie consumption? can your friend who would help with private hospital not arrange for you to have fluids or nutrition at home through a tube for a while to give you a chance to build some strength.

I am sure you don't have the energy for this, but if you wanted to you could make a medical complaint against the doctor - some advocacy groups use the law society to do this. There may be an advocacy group in your area, who a firend or relative could contact to help make the complaint. I don't expect anything would come of it, but at least it would be on record - a letter to a local MP might also be an idea, again just to safeguard you if the doctors start having crazy ideas.

PM me if you would like help with finding these orgs or contacting people on your behalf as I may be able to do this.
Know that we are thinking of you, and remind your self of that when you feel most scared.

Justy x

 

[Kati]

Dear Kate, I am so sorry that your health have so deteriorated and that not only your health care system can't helpyou, they abandonned you. :-(

Hang tough, my friend. Know you are not alone. Perhaps Invest in Me could have suggestions as of whoto see.

 

[Countrygirl]

Hello Folks

Just to let you know that I am in touch with Kate. She is too poorly to post right now, sadly, and is struggling with the intensity of the illness. She will rejoin us when she is a little better.

Thanks,

C.G.

 

[Nika]

Hi,

This is Katie's friend. I flew over to take care of her and I've been here for the past month. (Whoever it is who is keeping contact with Kate through emails, I emailed you myself the other day on her email account). I am writing here because she cannot and I don't know where else to turn for help. Her situation is only getting worse.

To begin with, Katie kept up with her 'usual' diet of baby food, pudding cups, chocolate bars and protein shakes made with almond milk (all soy apart from the baby food; no dairy). These were the only things she could tolerate - and when I say tolerate I mean it in the most detached way possible, as she wasn't comfortable eating any of it, just these are the ones that caused her the least discomfort. But recently, her gut discomfort has only got worse, so we've been trying to lay off the soy products in case soy is the reason. Kate has switched to pea protein, but it doesn't have a high calorie content at all, and we're finding ourselves stuck for options. She cannot manage water for the most part, so has been taking coconut water. For a while, she was also taking 60ml of aloe vera mixed in with her drinks.

Over the weeks, we slowly stared to introduce g3, a strong vitamin juice recommended by Dr. Judy Mikovits. We started by adding one teaspoon and have gradually worked our way up to five. However, due to a change in UK law, we have just found out that it's being discontinued and Kate's been pointed towards a different product called JVi which has a multitude of different ingredients. This came as a bit of a shock as she now has a whole new product to get used to.

For the past few days, she hasn't been able to eat much at all. I try to encourage her but she is fully aware as to how dire the situation is and is fighting it with everything she has, so when she says she cannot, she really cannot.

She is not tolerating food on a whole-body level. When she eats, or even drinks water, she begins shaking profusely. She feels poisoned/toxic to an extreme, unbearable level. It affects her breathing, her sinuses, her head, her heart, her general cognitive awareness. Inflammation everywhere goes bananas. She describes the feeling as so intense, it feels like she is about to have a stroke or a fit. All she wants to do is defecate, but there isn't anything inside her and she's not constipated. The more she eats on one particular day (though we are talking very small quantities), the more intense the symptoms get. Her body is screaming at her to not put anything more inside it.

Yet despite this, she does get hungry.. and her actual stomach rumbles and asks for food. It's more a case of
what happens during digestion. She doesn't have problems swallowing, and the actual physical act of eating is fine.

Her problems are not in the stomach, at least not mainly, but rather underneath it. I can only guess potential inflammation of the intestines. Her heart is in trouble too and she frequently reaches a state of tachycardia, related to her POTTS perhaps, but she feels it may be more likely a problem with her left ventricle.

We are in a Catch 22 situation. Everything screams hospital, if only for the tests to find out what is going on, but the exposure and exertion when she is in this state could only make her worse. She cannot afford to crash and get worse. This is the worst she's ever been. She feels like she's dying every day.

A GP just came round to look at her - not the one I asked for who is head of the practice and had seen her before, but a new one... so again, she had to go through the process of explaining what is going on with her. We explained it in great detail and stressed the urgency for a side-room in hospital, because she just cannot tolerate a ward. She spoke about a psych team to 'help with the stress' and deal with the symptoms while she is taking the necessary tests in hospital... which is... frustrating, to say the least. I want to pull out my hair. You cannot make this stuff up.

Is there no way to get around the hospital restrictions and have her transported there with minimal exposure (stretcher, eye mask, face mask) and then be admitted into a private room where I might be able to help her where they cannot? Keep in mind we are in the UK. Her parents have asked many months ago, but to no avail. Her good friend is fighting this battle full on and is trying too, but so far, it seems there is no solution... but to wait until she is literally dying, then risk everything and call 911 without any precaution at all.

As is, they expect her to go in without any form of protection, with exposure to all types of illnesses, in a ward with many people with excessive noise, movement and light. As is, she can hardly roll over in bed; the suggestion of her going to hospital as a regular patient is ludicrous. At the same time, I don't know how long it can be avoided.

Additionally, if any of you have suggestions as to how we might be able to ease symtoms for her along the way, that is always helpful. I aplogize for any potential misinterpretations, I do not have this illness myself. But I am so worried; I love Katie very much and she is suffering. I am at a loss as to how I can help her. This is exhausting for her. She is worse and worse every day.

 

[Countrygirl]

Nika,

I have just e-mailed you.

Do ring if you would find that helpful.

Thinking of you both,

C.G.

 

[justy]

How about a private room in an NHS hospital, I believe this is possible in some areas - you jut pay for the private room and the rest of the treatment is available on the NHS as usual.

 

[Nika]

That's what her parents were trying to do. I don't think they do it in Broomsfield. They also tried paying for a private hospital and got referred to the psychological approach.

 

[Countrygirl]

How about a private room in an NHS hospital, I believe this is possible in some areas - you jut pay for the private room and the rest of the treatment is available on the NHS as usual.

That sounds a good idea Justy.

It does seem the priority is to ensure that Katie is hydrated and receives adequate nutrition via a drip and that may well require a hospital admission.

Perhaps it would be wise to pack an ME hospital bag, which will include ear muffs/plugs and a few pairs of eye shades. It might be an idea too to take in copies of good quality printed information in case you come across that rare specimen: a doctor who is keen to learn about ME

Would you be able to stay with her during the day to be her protector and to ensure her needs are met?

I am sure you will receive much good advice from the people here.

C.G.

 

[Countrygirl]

That's what her parents were trying to do. I don't think they do it in Broomsfield. They also tried paying for a private hospital and got referred to the psychological approach.

You posted while I was writing, Nika.

Would it be possible to look further afield, although I know the travelling will be a major obstacle?

 

[Radio]

Please help, I'm in a pickle, and really at a loss for what to do.

Short background - long term severe ME, house bound for the past 13 years, stable at around 10%. Always had gut problems from onset 20 years ago, but (just about) manageable.

In July this year, something went wrong with my digestion. Following a stomach bug (I assume), something remained 'broken' in my gut and I lost the ability to eat solid food. I sustained myself on bone broth and coconut water by the spoonful, managing only just to keep it down, eventually progressing to chicken soup and eggs, but then I broke again and was back to liquids only. I've tried slippery elm, aloe vera, sauerkraut juice, and the first stage of GAPs intro. Consuming anything lead to considerable GI tract pain, shaking, sweating, and basically feeling food poisoned. I've had persistent, chronic diarrhoea and abnormal heart rhythms throughout.

The whole process has taken five months, with stool samples and blood tests normal, IBS thrown about, and general procrastinating by my GP. Eventually, I paid to see a private gastroenterologist who gave me the line of 'knowing nothing about ME', and shunted me back to the NHS.

Finally saw a NHS gastro three weeks ago. She was very good, took me seriously and marked me 'urgent' for a CT scan, endoscope, colonoscopy and also a referral to cardiology and dietetics, all of which I'm waiting for.

However, following the hospital visit for just a consultation (it was extremely hard to get me there), I have crashed to the worst extent I've ever experienced.

I'm bed bound and I feel I cannot breathe; there's a pressure on my chest, and even with oxygen (I have a concentrator following a stint at Breakspear five years ago), I feel utterly suffocated and oxygen deprived. There are pains and strange sensations all through my trunk. My limbs are numb and tingly, my body's twitching and constantly shaking. I'm too weak to stand, cannot wash or visit the toilet. My heart's pounding very uncomfortably. Noises, light, movement, touch are excruciating. MCS, ENT symptoms and allergies have gone through the roof, sinuses and eyes very sore. The slightest movement sends my world spinning. I'm very, very sick. My head feels inflamed and I have new depression/mental disturbances. I literally cannot cope with anyone being in the room with me. My whole body feels like it's shutting down and I've lost all control over it. A darkened room is all I can cope with but the struggle I'm having to breathe is terrifying me.

I'm managing to eat one jar of baby food at night after sedating myself with zopiclone. This is the only time I can take on any liquids, too. I've lost three and a half stone and am still losing. I'm deteriorating quickly, and I don't know what to do. I'm genuinely frightened that I'm dying.

I don't know what to do because I cannot see how I can possibly contemplate hospital again, whether for tests or otherwise. I honestly think it will kill me, I cannot envisage being moved at all. But I also know I cannot continue like this, unable to eat. I just cannot manage what needs to be managed in the grips of this level of rapid deterioration, and can't cope as it is, let alone risk crashing further. Catch 22 .

If anyone has any advice, words of wisdom, experience.. please help. I know forums don't replace medical attention, but I'm at a loss for what to do.

Thank you for taking the time to read.

Hello Kate,

I am very interested in knowing the results of the endoscopy, colonoscopy. I have a feeling your endoscope will show gastritis and this can dramatically affect stomach acid producing as well as other contributing factors. We need stomach acid to keep infections in check, also we need HCL and bile acids to maintain balance in the gut flora. These imbalances can lead to dysbiosis that can produce toxins that can damage every cell in the body. If we add in chronic deficiencies, leaky gut, malnutrition and other chronic infections to this scenario we have problems. I recommend a functional medicine doctor to help you address these and other possible underlying causes of your illness.


Find a Functional Medicine Practitioner
https://www.functionalmedicine.org/practitioner_search.aspx?id=117



Disclaimer
The information on this thread is not intended to be medical advice. The information is meant to inspire and motivate you to make your own decisions surrounding your health care and dietary needs. It is intended for educational and informational purposes only. You should not rely upon any information found on this thread to determine dietary changes, a medical diagnosis or course of treatment. Readers should perform their own research and make decisions in partnership with their own health care providers.

 

[Countrygirl]

Nika, did you try Burrswood?

 

[brenda]

I have suggested requesting a home visit from a doctor at Break spear where Kate has attended in the past to get a report for her gp outlining her needs and/or her parents to threaten the surgery with the press if they don't get a nurse out to set up IV feeding.

 

[peggy-sue]

Is this leaflet of any use?
Produced by The Grace Charity for ME, it's about what hospitals need to know about patients with ME.

 

[anciendaze]

This recent report is exactly what worried me when I first got involved in this thread. The inability of hospital staff to see that they are facing something besides neurosis remains unbelievable.

I do not have any diagnostic or treatment suggestions concerning the whole problem, it is just too complicated. What might at least be harmless, if it is not actually helpful, is IV saline solution administered where she is now. General emergency medicine principles normally suggest this where there is a problem with hydration. In some patients with hypovolemia and hyponatremia the result can look like a miracle. This would also avoid the stress of hospitalization, and might enable her to eat. This problem has gone on long enough to be dangerous.

If doctors with a psychological bias are concerned that this might validate her "false illness beliefs" they might consider where concern about collapse caused by inanition and dehydration ranks in their scale of values.

I am not a doctor. What training I had in emergency medicine was long ago in the Army. I did have experience there with dehydration, heat stroke and shock. I have never had any doctor tell me to ignore evidence of dehydration. It is right up there behind clearing airways and stopping bleeding.

 

[Radio]

This recent report is exactly what worried me when I first got involved in this thread. The inability of hospital staff to see that they are facing something besides neurosis remains unbelievable.

I do not have any diagnostic or treatment suggestions concerning the whole problem, it is just too complicated. What might at least be harmless, if it is not actually helpful, is IV saline solution administered where she is now. General emergency medicine principles normally suggest this where there is a problem with hydration. In some patients with hypovolemia and hyponatremia the result can look like a miracle. This would also avoid the stress of hospitalization, and might enable her to eat. This problem has gone on long enough to be dangerous.

If doctors with a psychological bias are concerned that this might validate her "false illness beliefs" they might consider where concern about collapse caused by inanition and dehydration ranks in their scale of values.

I am not a doctor. What training I had in emergency medicine was long ago in the Army. I did have experience there with dehydration, heat stroke and shock. I have never had any doctor tell me to ignore evidence of dehydration. It is right up there behind clearing airways and stopping bleeding.

This is a good idea. I have advocated IV saline therapy before as this has help me in the past. This can also help increase blood volume and be very beneficial at lowering inflammation.

 

[Wayne]

This may seem like a bit of a far fetched idea, but..... I have a book on the therapeutic benefits of Castor Oil Packs, and thought I'd mention one of the testimonials in the book. If you read about three paragraphs at this link starting with "Velma is a seventy-two...", it dramatically illustrates how one therapy alone successfully addressed a 23-year long history of intense intestinal discomfort --- within minutes.

I have no idea whether a castor oil pack might be helpful, but I don't see how it can hurt. Castor oil packs are well known to have a calming and harmonizing effect on the nervous system, and even if it didn't improved some of the GI distress, perhaps it can calm Katie's neurological system down.

All the best to Katie and her caregivers (bless you).

Wayne