What has helped for you - severe progressive patients please.

[justy]

Hi, I am trying to find help for a patient who is bedbound with severe muscle damage, fibro, possibly M.E (not dx) and severe incapacitating itching ( dust allergy?) They have, as far as I know the usual issues that those with severe M.E have.

Their situation appears to be progressive and worsened after a stay in hospital last year.

Is their anything that can be done - any hope, from those who are in this category of being severe and progressive?

The patient has tried many supplements and nothing has helped, and IS NOT going to be able to go and visit any doctor anywhere, this is a physical impossibility.

They report an improvement of symptoms, briefly with Nytol - but then developed serious issues with taking this. Regular anti histamines- OTC- caused severe vomiting (these were tried to control the itching)

They have no GP as they have been kicked off their GP list.

Any suggestions would be very helpful.

all the best,
Justy.

 

[Calathea]

Mast cell problem? I do tolerate antihistamines, but still sometimes end up with fairly bad itching despite them. Moisturising my body all over with chickweed oil helped a certain amount, although you need a support worker to do it and it can be rather tiring. Still, it was better than staying up all night with my skin burning.

 

[justy]

Thank you @Calathea - I think mast cell issue is high on their list of ideas, but without the energy to do the research and take the info in it is very hard to understand what to try. (that is both of us who find it hard to understand!)

Thanks for suggestion.
TC,
Justy.

 

[Calathea]

It's basically just a moisturiser, and I rang an aromatherapy supplier and chatted about the carrier oil most likely to help with itchy skin. Chickweed was universally recommended. They could try any moisturiser, really, including aqueous cream if they'd a) prefer a cream, and b) prefer a mineral oil base.

At present I'm having itchy skin issues due to using magnesium oil all over. I find that if I put vegetable oil on first, it hugely reduces the itching. I haven't done this in ages, my skin had been fine for a good year, and I remembered how much it cost last time, so I've been using cheaper oils. Sunflower is a good basic oil, but it's a bit on the greasy side. Hemp oil is recommended as very lightweight and quickly absorbed, indeed some people apparently find it too drying. You can also buy it relatively cheaply at supermarkets, £6 for 500ml. So I got a bottle of that, found it very nice indeed, and put some chickweed oil into the bottle as well.

 

[peggy-sue]

They should be able to get another gp immediately.

I got kicked off one gp's list - he couldn't be bothered dealing with somebody who had a drink problem. Told me not to bother him until I'd dealt with it myself, and I couldn't, so he dismissed me.
(He was the one who'd got me addicted to valium in the first place too, and who told me if I ever got accidentally pregnant he would personally ensure I would be unable to obtain an abortion, anywhere. And gave me antifungal drugs which made me loopy, for my eczema.)

It was not a problem with the new surgery I found. I spoke to a lovely gp who I told I'd had personal disagreements with my old gp, I didn't expect my notes to be complimentary, and he was really, really nice about it.
He got me of the booze, he was kind and helpful, we had a great relationship!
But he left. Being a gp was far too unchallenging for him.

 

[Daffodil]

justy....perhaps she could order some gcmaf and try that at a very low dose?

low dose naltrexone maybe?

 

[Calathea]

Has she checked her toiletries and laundry detergent?

 

[SOC]

The Allergy Research Group Pall Protocol supplements helped with my MCS and allergy-type symptoms. I wouldn't say it made much of a dent in my ME symptoms, though. That took Valcyte.

Anti-inflammatory or immune modulating supplements might be some help, but if the patient is getting severe vomiting just from ant-histamines, any oral supplement may be bad.

I doubt you're going to find OTC meds/supplements that will make a huge difference to a bed bound severe ME patient, so the best hope is that they don't have ME. Maybe the most helpful thing you could do is figure out how to get in-home testing for potential alternative diagnoses in case it's something more easily treated.

 

[Sidereal]

I was severe and bedbound until I addressed my mast cell issues with antihistamines. I am still largely housebound but I've made significant gains just by taking OTC allergy meds. These can be surprisingly effective if most of someone's symptoms are due to mast cell activation. Unfortunately, as you say, these meds were not tolerated.

Some people with mast cell activation disorder have reported benefits from an OTC supplement called Daosin or Histame. This contains the diamine oxidase (DAO) enzyme needed for breaking down histamine. I personally haven't experienced any benefit whatsoever from this product, but I have heard from others who have. Elimination diets can be helpful too. In my case, dairy, wheat and eggs were big problems. I've also had to moderate my protein intake.

I take it this patient is in the UK? Given how poor the testing is on the NHS, I wouldn't discount the possibility that the true diagnosis has not been arrived at. Severe fatigue and itching could be a sign of primary biliary cirrhosis, an autoimmune condition.

 

[justy]

yes, Daosin has been tried with no effect. LDN is something they would like to try - not sure how to in UK? I believe laundry detergent etc has been ruled out.

So impossible to get a severely ill patient tested by anyone for anything, especially without an interested GP. I am too far away to help with GP's etc. Everything takes so long and is complicated by not being able to speak for long etc.

The patient would love more than anything to have their symptoms taken seriously and properly investigated, unfortunately this is not the case.

Thanks for all the replies.
Justy.

 

[minkeygirl]

I have found even .5 mgs of naltrexone really helps me. But you need an RX to get it unless you can find a pharmacy online that has a doctor on staff who will approve the RX.

 

[justy]

I have found even .5 mgs of naltrexone really helps me. But you need an RX to get it unless you can find a pharmacy online that has a doctor on staff who will approve the RX.

is it available by prescription on the NHS - what is it used to treat - can it be prescribed for Fibro?

 

[Cheesus]

Go check out the low dose naltrexone research trust for some good information. They have an information booklet you can take to the GP. Unlike ME, FM has had two studies done on it with LDN both with good results. I advise taking these along too. You really need to build the evidence to convince the GP so you can walk in there fully informed otherwise they are more likely to dismiss it.

To get it you have to get a prescription then send it off to a compounding pharmacy who will make it up for you (they don't manufacture it in those low doses so you need a compounding pharmacy). I think the LDN research trust has more info on this. There is a good pharmacy in Glasgow who will mail it out to you.

Some primary care trusts will fund it, some will not. If they don't then there is a chance the doctors surgery might be willing to fund it, but again there is a chance they won't. If all else fails the person will need to pay for it themselves. I understand it is expensive but not prohibitively so for most.

 

[brenda]

The only thing that helped me when I was in such a state was diet. If the person can soak brown rice for 2 days and sprout it for a day or two, cook it for an hour and chew each mouthful for as long as possible say - 25 times, a couple of days of this should show an improvement and afterwards they can add vegetables and slowly build up the diet according to what foods are acceptable for their body. Once the rice is cooked, it can just be eaten, a small bowlful at a time with no more cooking required for a couple of days. I would stay well away from supplements until there is stability.

 

[maryb]

@justy
having had a really bad reaction to casein in yoghurt yesterday I remembered how bad food made me feel until I removed gluten, dairy sugar etc. I was lucky in that I was able to have testing as well and things like eg. peas... I didn't know I was intolerant to them but whenever I eat them I do get a reaction. I eat everything I'm intolerant to once in a while as they say its the best way if you are ever going to be tolerant again. Sorry for the ramble was just meaning to say please try taking some stuff such as gluten out of the diet, good idea from Brenda - introducing stuff slowly will give you some idea.

 

[peggy-sue]

I really am very concerned that your friend hasn't got a gp of any sort.

She is entitled to one. Everybody is.

Just because one lazy ignorant idiot doesn't want to be bothered by her problems doesn't mean everybody else will be like that!

I was welcomed in to my new place - there was nothing bad followed me, I was not treated badly, but helped with the problem the previous gp had refused to help with.

(Then the good gp left, and the rest of them are rotters about ME, but that's another story.)

She was "delisted", presumably because the gp she had couldn't be a*sed with dealing with the difficult medical problems she has.
This does not mean she should be left without access to a gp.

 

[xchocoholic]

I'd try the elimination diet and a small amount of dye free children's benadryl.
I tolerate 1/4-1/2 tsp well but couldn't handle the other otc allergy meds.
Dye free is important for some too.

Taking 50 mg of chelated zinc daily really helps my allergies too. If I miss it, I can tell.

tc ... x

 

[justy]

I think part of the problem for this patient is that they are entirely bedbound and with no family support - only a visit once a day from carers. so sorting out a GP is a nightmare in itself, let alone finding one who is going to be amenable. I believe the patient has been generally disbelieved by GP'S carers etc alike and is being labelled 'psychosomatic' by all around them.

I can see this is not true, but labels stick and the patient is not able to keep up with the amount of phone calls needed to access correct healthcare.

Thanks though for all your advice and suggestions. we will be hopefully discussing it together in a few days to see if there is anything they would like to or are able to try/ or instigate.

Cheers,
Justy.

 

[taniaaust1]

My thoughts with the itching is mast cell disorder or allergy maybe food issues, she should have blood test done for mast cell issues. What's her clothes and sheets/blankets being washed in? (chemical free?). Has she tried dietary changes and cutting out certain food groups? I think it needs to be worked out exactly what is causing this itchy reaction.

Something else she could try is bathing in salt and bicarb soda (baking powder). When I had severe itching (I had Morgellon's for a while.. it can be a coexisting illness to ME/CFS and causes severe itching) I used to soak in 1kg salt and 250g bicarb soda (but one could use less.. bicarb is commonly used to itchy skin and the salt has a cleansing action thou may make one more itchy at first but then it settles and can cause great relief). My itchiness was so bad that i used to sleep in the bath of this.

drs for her.. can someone else be found who has ME/CFS who is in her local area to find out if they have a better dr? Is there a ME//CFS org where she is in which dr recommendations can be asked for?

Has she been checked for the methylation issue.. MTHFR polymorphism.. that causes excess histamine (so maybe playing into her itchiness). The saliva test from 23andME would tell her if she has this and one doesnt need a dr for that. It was throu a histamine test with having a high normal result in which my specialist first became aware of my MTHFR mutation.. on testing then for that it showed he was right. (Can those in UK order the 23andME test? I was able to order it and send my blood overseas from Australia).

MTHFR mutations are quite common (around 8-19% of the population depending on what country you are in).and probably even more common in ME/CFS, treating these if you have one can really help things.

Dr Lynch says on the MTHFR website
"If histamine is high, then you need things like methylfolate and methylcobalamin. " So I guess she could try those and see if it helps her itchiness at all.

 

[ithought]

You said she has been kicked off her GP's list. If she is in the uk then the local NHS health board has to allocate her a GP. She really needs support to get a GP firstly. I recommend showing any new GP a copy of voices from the shadows a copy of the Canadian consensus criteria and if your in the uk the ME Associations purple book.

As for helping your friend keep stress and stimulus down to the minimal rest rest and more rest and as healthy A diet as possible with filtered water. Hugs