Please help, I'm in a predicament

[Min]

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.

 

[Countrygirl]

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.

 

[xrunner]

@Nika

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.
.

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.

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.

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.

 

[TigerLilea]

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!

 

[Nika]

Hi all. Thank you for your replies

Nika, did you try Burrswood?

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.

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.

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 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.

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.

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.

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.

 

[maryb]

@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.

 

[Radio]

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.

Intolerance to Sulphur
Some people appear to be intolerant to many foods and supplements containing sulphur, including some B vitamins. This also includes glutathione shots and oral Lipoceutical Glutathione.

There are bacteria in the small and large intestine that convert (reduce) sulphate compounds from sulphur-containing foods and supplements to hydrogen sulphide gas (H2S). Excess hydrogen sulphide is a potent neurotoxin - affecting both the brain and nervous tissue. Candida yeast also produces some hydrogen sulphide gas when it ferments carbohydrates.

If someone is having difficulty with all sulphur-containing substances except taurine and sulfate, the problem may be at the sulphite oxidase step in the metabolism of sulphur. All the chemically reduced forms of sulphur except taurine must eventually pass through this step to get to sulphate, the most oxidized form of sulphur. Excess sulphate is excreted in the urine, as is excess taurine.

In some rare cases, the problem at the sulphite oxidase step is genetic, involving the formation of the active form of molybdenum (molybdopterin). People with this problem have severe disease. However, in many cases, just taking more molybdenum will help. Molybdenum is the cofactor for the enzyme sulphite oxidase. Molybdenum is also a cofactor for two other enzymes in the body, xanthine dehydrogenase and aldehyde oxidase. People with molybdenum deficiency therefore can have low urate (uric acid) levels as well as intolerance of alcohol.







Sulphate is required for:

· mucin proteins: Mucin protein production is very important. If there is a deficiency in sulphation there are known links with gut dysfunction and irritable bowel. There must be enough sulphur attached to these proteins otherwise the gut wall will allow peptides through.

· steroids

· bile acids

· phenols

· cholecystokinin: Cholecystokinin (cck-8) protein allows the gut to be linked with the brain structure. This stimulates the secretion of enzymes, gastric acid and gall bladder contraction. It also controls food intake.

· Gastrin must be sulphated to release active pepsin. Pepsin activates secretin release and cholecystokinin, which when sulphated, stimulates the pancreas to release pancreatic enzymes.

· catecholamines

· formation of connective tissue.



The average plasma sulphate level is 4.9 in normal children but 0.49 in autistic children.





Sulphation
Sulphation inactivates some neurotransmitters in the brain. Low sulphation à residual neurotransmitters

Mucins that make up the mucus within the intestines are sulphated, ¯ sulphate à ¯ mucin à poor gut integrity à gut dysfunction and irritable bowel.

Cholecystokinin (cck-8) stimulates the secretion of enzymes, gastric acid and gall bladder contraction. It also controls food intake.

Sulphation must also be present for digestive hormones to function properly.

Gastrin must be sulphated to release active pepsin. Pepsin activates secretin release and cholecystokinin, which when sulphated, stimulates the pancreas to release pancreatic enzymes.



Foods that inhibit these sulphation enzymes are: oranges, spinach, radishes, grapefruit, beetroot, peppers, pumpkins and tomatoes. Other foods that inhibit sulphation are bananas, cheese and chocolate.



Sulphation is also reduced by excessive levels of molybdenum or vitamin B6 (> 100mg/ day).





PST Deficiency Symptoms

Some typical symptoms indicating your child may have a phenol problem are [not all of these need be present]:

o Dark circles under the eyes,

o Red face/ears,

o Diarrhoea,

o Hyperactivity,

o Aggression,

o Headache,

o Head banging or other self-injury,

o Inappropriate laughter,

o Difficulty falling asleep at night

o Night waking for several hours

o Night sweats


Testing: A subjective test for PST efficiency is to observe a reaction to Tylenol or acetaminophen – either hyperactivity or lethargy. Therefore Panadol should be avoided for kids with a PST problem (One source suggested that one or two minutes after adose of Tylenol™, the entire supply of sulphate in the liver is gone!)




Sulphate Transport and NaSi-1 Gene Mutation
Sulphate is ingested as a mineral in food such as grains, dried fruit and nuts, is absorbed in the small intestine and circulates in blood plasma where it is used by almost every cell in the body. For example it is required for nerve growth in the brain, detoxification processes in the liver and bone and cartilage growth. As sulphate is hydrophilic, it requires a transporter system to pass across plasma cell membranes. The kidney transporter proteins reabsorb sulphate to saturation point, and then sulphate is excreted in the urine. Autistic individuals have lower serum sulphate levels compared to normal controls. As sulphate transporter proteins control plasma sulphate levels, research is being undertaken to see if the transporter proteins are defective in autistic individuals. Autistic individuals excrete large amounts of sulphate compared to non-autistic individuals.

Sulphate transporter genes, such as the NaSi-1 gene, encode a sulphate transporter protein that is expressed in the proximal tubule of the kidney. When 20 autistic individuals were compared to controls, two mutations were found in the gene that changes the function of the NaSi-1 protein. One mutation caused complete loss of function of the protein, the other caused a partial loss of function.

In a mouse model where the NaSi-1 gene has been knocked out, the mice excrete large amounts of sulphate in their urine and exhibit some behavioral abnormalities and gastrointestinal disturbances, such as soft stools, which parallel symptoms of autistic individuals. Autistic individuals have ‘leaky gut’. Sulphate loss also occurs through the intestine and it is believed that autistic individuals are losing sulphate through both the kidneys and the intestine, as the NaSi-1 gene is expressed in both organs. Autistic individuals usually have a five-fold lower level of serum sulphate compared to control individuals.

Some neurotransmitters in the brain are inactivated by sulphation, so sulphate plays a major role in maintaining the balance required for proper NS function. It is also suggested that glutamate and serotonin levels are altered in the brains of autistic individuals. If there is insufficient sulphate present to remove neurotransmitters this leads to residual neurotransmitters that cause problems. As sulphate is lower in autistics the brain may not be getting enough sulphate to get rid of those neurotransmitters that are no longer required. Mucins, a group of glycoproteins that make up mucus in the small intestine, are lower in NaSi-1 knockout mice. Mucins are sulphated, a process that helps them in their function of forming a protective layer against infection in the gut. The under sulphation of mucins may also be present in autistic individuals, which would make them more prone to infection.

Ion transport may hold autism clues. Susan Williamson. Australian Life Scientist; Aug/ Sept, 2004.



Loss Through Kidneys And Gut
Large amounts of sulphate are excreted via kidneys (defective sulphate transporter genes; NaSi-1) and intestines (leaky gut).
Foods & Supplements That Inhibit PST

Vitamin B6
B6 in the form of P5P (pyridoxal-5-phosphate) inhibits PST (phenol sulphur-transferase) activity. (This could be why some children show adverse effects when supplements high in P5P are started) However the same study showed that increasing magnesium supplementation reverses this inhibition.

ARI got Rosemary Waring to do the research that showed that B6 can inhibit human sulfotransferases, but they are activated by magnesium so that if you have at least a 1:1 mix of B6:Mg there is no problem. This is why, if you have a problem with B6, try to see if taking magnesium will help. See more here http://www.allnaturaladvantage.com.au/Sulphation_diagram.htm



Foods that inhibit these sulphation enzymes are: oranges, spinach, radishes, grapefruit, beetroot, peppers, pumpkins and tomatoes. Other foods that inhibit sulphation are bananas, cheese and chocolate.

 

[Radio]

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).

Sulfur is an essential mineral found primarily in proteins (sulfur containing amino acids like cysteine and taurine; found heavily in animal proteins) and in Alliaceae vegetables - garlic, onions, broccoli, cauliflower, cabbage, Brussels sprouts, and a few others. Sulfur is also found in varying amounts in grains and nuts.

Source - https://secure.flickr.com/photos/tator82/451998913/sizes/m/in/photostream/

Sulfur is an essential element in:

1. Nerve growth
2. Neurotransmitter inactivation
3. Bone & cartilage growth
4. Mucus production
5. Detoxification

The big three that I’d like to focus on for this article are:

1. Nerves & Neurotransmitters - proper nervous system function
2. Mucus production - proper gut health & leaky gut
3. Detoxification - proper elimination of toxic compounds

So if you don’t have enough sulfur in your body you can’t do the three things above, and that makes life tough. Why might you not have enough sulfur?

1. Not eating foods that contain sulfur - probably not a problem for most people, but very restricted eaters, like autistic kids who only eat mac & cheese, might run into this
2. Poor digestion - if you can’t effectively break down and absorb your food you could run into a sulfur deficiency. Of course we would expect to see this in the context of multiple other nutrient deficiencies.
3. Sulfate reducing bacteria - my focus for this article

The problem with gut bacteria

If you’ve read much of my blog you know I’m a huge fan of good gut bacteria. They make health possible, and when they go bad they cause disease. But here’s a new twist.

Bacteria, especially Streptococcus, Enterococcus and Prevotella, can turn sulfur into hydrogen sulfide gas. Hydrogen sulfide gas smells like rotten eggs, is toxic to our nervous systems and our mitochondria.

So if we have a dysbiosis which contains a good deal of sulphate reducing bacteria, we have problems!

1. Deficiency of sulfur which means
   1. Our nervous system doesn’t work properly - nerves can’t grow properly and neurotransmitters can’t be effectively broken down and removed meaning the levels of our neurotransmitters will be imbalanced, causing neurologic and behavioral issues.
   2. We can’t produce enough mucus to keep our guts healthy, meaning chronic issues with leaky gut.
   3. We can’t detoxify effectively - making people toxic (a whole host of problems) and chemically sensitive
2. Excess hydrogen sulfide which is
   1. Toxic to our nervous system - double whammy when combined with sulfur deficiency
   2. Toxic to mitochondria - the energy producing parts of our cells. Leading to low energy in our cells and our bodies. Might lead to chronic fatigue like symptoms for some.
   3. SEE MORE AT: http://www.aspirenaturalhealth.com/...he-puzzle-post-149-by-dr-tim-gerstmar-3262012

 

[peggy-sue]

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.

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.

 

[maryb]

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.

 

[barbc56]

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.

 

[Min]

Severe dehydration

If dehydration is left untreated it can become severe.

Severe dehydration is a medical emergency and requires immediate medical attention.

Contact your GP or out-of-hours service straight away if you have any of the following symptoms:

feeling tired (lethargic) or confuseddry mouth and eyes that do not produce tearsnot passing urine for eight hoursdry skin that sags slowly into position when pinched uprapid heartbeatblood in your stools (faeces) or vomitlow blood pressure (hypotension) irritabilitya weak pulsefits

If severe dehydration is not treated immediately, it can lead to complications. You can even die from severe dehydration because the blood stops circulating.

This level of dehydration needs hospital treatment and you will be put on a drip to restore the substantial loss of fluids.

 

[anciendaze]

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.

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

 

[rosie26]

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.

 

[Advokate]

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!

 

[maryb]

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.

 

[Advokate]

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).

 

[anciendaze]

@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".

 

[Advokate]

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.

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.

 

[maryb]

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).

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.