Good afternoon everyone,
I am a diagnosed sufferer of PBC & I am beginning to get vibes from things I have read on this site & read on the internet ( Although I can't recall my specialist mentioning this to me) that I should not be using cleaning products / toiletries i.e., bath gels, talcum powder, deodorant or body sprays etc. Have I got it right or have I just mis understood somewhere along the line?
I would much appreciate anyone's input on this subject.
Kind regards,
sallam
Most everything we use, including hair dye, has chemicals in them. You can find green products, (not sure about the hair dye) online. They aren't cheap. With my medication costs, my supplements, doctor's visits and trying to eat healthy..... I'm going broke. But it is very important because just about everything goes through the liver. Since I was diagnosed last Sept. it's been all about "Make it last, Use it up, Wear it out." We have insurance but my naturopath isn't covered by insurance, nor are my supplements and those have helped me tremendously.
Stella
Hi Stella,
Which supplements do you use from your naturopath? I just had my first appointment with one.
Thanks!
Hi KristinPelletier,
I can't take URSO so I'm doing everything I can to build up my immune system. I'm on a strict anti inflammatory diet and I'm taking 3 mg Low Dose Naltrexone at night. I also take Alpha lipoic Acid, Milk thistle, Selenium, and a vitamin B complex as well as vitamin C. *The amounts will vary according to your own specific needs.
My naturopath (Dr. Khosh, Lawrence KS.) Has me on:
1. (By INTERGRATIVE Therapeutics) LIPOTROPIC COMPLEX *comprehensive liver support
2. (By Ancient Formulas) SUPERADRENAL
I was diagnosed 10/10/16 off of blood work. As of Dec.1st 2016 a biopsy showed no damage to liver or bile ducts yet. However PBC is diagnosed as my liver enzymes are elavated including my AMA M2, which is definitive for PBC.
Hope this helps.
Stella
Thanks Stella.
I am in the US too, I live in CT. I just started Urso a little over a week ago with minimal issues so I'm praying that it works. I'm stage 1 and have started an autoimmune diet and supplements as well. My naturopath was trying to have me take UNDA drops but I didn't want to do too much all at once. Have you heard of these? I haven't seen much on them.
Thanks!
KristinPelletier,
No, I've never heard of those. I'll Google them. My hepatologist is against my naturopath's supplements. He wants me to start the URSO again slowly and work my way up to my dose. I'm planning on marrying both worlds, naturopaths' and hepatoligist. Hopefully I can keep this disease at bay.
It has totally messed with my head, I had anxiety since diagnoses that I'm trying to control w/o drugs too. So, I guess we all handle stuff differently. I'm working on it. Check out lowdosenaltrexone. org
I'm 6 weeks on LDN and feeling pretty good really.... just this anxiety! Comes and goes.
Stella
I did hear of the LDN but my hep said no. Did yours prescribe it to you? I started the Urso slowly based on reading someone else's suggestion and I have been ok thus far, but I am only almost 2 weeks in. I hear you on the anxiety. I am all about mind body and soul healing, so that is my current path right now.
KristinPelletier,
No, my hep is against it (LDN) That is because at it's FDA approved dose (50mg), it can be lethal to a compromised liver. However, at 1.5 mg to 4.5 mg per dose, (substantially lower) it has proven to be beneficial.
PBC is one of the many autoimmune diseases where "low" dose naltrexone can help.
So I'm giving it a shot. I'll keep you posted. I am have another doctor I see, she's a "wellness" doctor, practices functional medicine, she's an M. D. She put me on it.
So since Sept. 2016, I have 4 doctors...1.) My hep, 2.)my gastritis doc, (I'm all better from that. But that's how they found PBC.) 3.) My Wellness doc. 4.) My naturopath
Whew!
...also KristinP,
I'm in the U. S. where are you? I know this forum is U. K. based yes? I can't get on the U. S. site and I'm not on Facebook. I'm so glad I found this site.
Stella
57 yrs, dx 10/16
Hello Sallam.
I've always used very little in the way of household cleaning products myself. I have always bought non-biological and when funds allow ecological products. I am on my 3rd spray can of furniture polish in almost 34 years and this 3rd can is over half full. I rarely use it. I don't think you need all those cleaning products round the house anyway. I buy vinegar and use in my stainless steel pans, it is very good for cleaning things like that. (I am in the UK by the way.)
I think with personal hygiene and beauty products you can't really avoid all. I didn't use a hair dye until I was 37 (I am now nearly 53) and when I have the money I buy more natural hair colours. I have used a company now known as Beauty Naturals (formerly Martha Hill) here in the UK for over 2 decades. They do some good beauty products. I don't wear make-up, never have so no problem there. I originally started buying deodorants from Martha Hill (their own brand) and still do as they were the only ones years ago that I found didn't cause a problem under my arms.
I think with cosmetics, it is probably not much of a problem as the item is used on the skin surface. I think it is products and chemicals that are ingested that could be an aggravation to the liver.
My consultant never mentioned avoiding anything when I was diagnosed in 2010 (he said he gave GPs talks on PBC). I did ask about dietary and he just said to carry on eating normally as from what I had stated seemed pretty much fine.
I think you can look into a lot of things and even in the news there is always some article saying to everyone to avoid this or that and then several years later the information is being back-tracked and considered fine so little wonder we all get muddled up.
I itch with PBC but for me having a bath hasn't made much difference to what I put in it as I always chose carefully or didn't bother with anything. Since this PBC lark occurred I've tried buying Epsom Salts for bathing as supposed to be good for muscles and also said to detoxify. Not sure if the latter is so but I have had no problems using the Epsom Salts in the bath. I've also tried vinegar and honey together and had no problems but not done anything for the itching mind. Common salt is a good skin healer but need to take care as it can dry the skin. My way of thinking re personal products is to use as little as possible as I do not think we really need most of what is 'out there'.
You are Sensible peridot.
I think we just have try to limit the amount of chemicals we give our bodies to deal with as best we can. We cannot escape everything. The money we save by not falling for the advertising hype that we need need sterile over clean (notice i said over clean) skin, homes and food will be better spent elswhere. For instance ,medication, supplements and doctors visits.
Thankfully in the uk we have the nhs. When i read posts like this one it really makes me appreciate not having to save up for blood tests, doctors visits or medicine.
Im going to give beauty naturals a look over too. My greys are running wild lol.
Here's the link for Beauty Naturals. In the UK where I am the postage is free. I find I receive the items in a few days from internet ordering. Communication has aways been good with this company too.
PS Last night when I was looking at something online, another company I used to receive little books from for ordering items, jsut thought I'd see what their perfume had in them. I love the smell of lavender and just happen to check their French Lavender perfume. Apparently it is just pure lavender and ethanol so nothing nasty in that. Thinking of giving it a try. I did have some natural perfume from another company that was lovely as I don't tend to wear much in the way of perfume but from time to time, find I do like a bit. This company I am on about is called ffirstimpressions and if you are going to check, you have to type it as I've put here to find the site. They are based in the UK.
I must check out those programmes from years ago with the 2 cleaning ladies who didn't use chemicals either Aggie and Kim. 'How clean is my house' I think was the name of the programme. Unfortunately I have tended to go the 'easy' route but now use Method products that are supposed to be much more natural. I probably could do with being more diligent in researching them to make sure they're living up to their branding.
Hello AdeleMalcom.
I did once buy one of the products (washing-up liquid) that you have mentioned as they were on supermarket offer. I wasn't keen and I scrutinized the ingredients. I actually found I wasn't keen on this so went back to one I've used for some time, what I call my ONLY luxury items, Ecover washing-up liquid. Apparently if an oil is added to it you can turn it into a great handwashing liquid but I've never tried this. I found when I left home many years ago when I married, due to washing-up more than when at home, my hands used to start cracking certain times of the year so I found best to keep products to a minimum. These days in the winter months I find myself grabbing some rubber gloves.
Due to being old-fashioned in the late 1980s I bought terry nappies for my 2 children and with washing those, I always took care what washing products I bought. I have continued as find I don''have a problem.
Never being a smoker nor living with one since leaving home (my parents smoked) I don''get the usual problem on furniture, etc so I find that I can just use a dry duster and the occasional slightly damp one, works fine for me.
My bath being acrylic, I find the best way to clean that is with washing-up liquid. I do think less is by far the best. I know when I worked in a GP surgery up to a few years ago, one of the GPs in particular loathed some of the staff spraying air freshners about, he said it was a case of spraying chemicals. I've never actually bought air freshners in sprays nor blocks, etc., find opening windows (and doors in summer) can really air the home best.
I got the ecover washing up liquid years ago. Wasn't impressed but i kept the bottle as it has very small hole in the top. Put fairy in it now and water it down. A lot. Use a lot lot less and still get dishes clean. People do tend to use too much without thinking.
There are lots of recipies on pinterest for home made cleaners. Some more effective than others.
Air fresheners and fly killers a no no in my house. Tooooo many toxic chemicals.
I try to avoid buying cleaning chemicals when possible. More and more I use vinegar and bicarbonate of soda because they are cheap and very effective with grease and limescale
The whole idea behind using natural products is to reduce the toxic load on the liver, and other organs. Everyone needs to think about this, but particularly those with liver diseases as the liver no longer functions properly on its own. Even make-up and personal hygiene products containing chemicals add to the toxic load...remember that our skin is our largest organ so it absorbs these chemicals and they get into the bloodstream, etc. I am trying to switch to natural products as much as possible, but it is a process for my husband and me. You have to rethink how you do things and do plenty of research. Old habits can be hard to break, so it's one step at a time.
Agreed.
Doctors do not have time to gen up on these things. So we can help ourselves.
And it saves money
Hello YvonneGS.
I think in the changing world it is very difficult with regards to what is out there on the market. I have never worn make-up nor would I say I've had a toxic overload of beauty products in my adult life.
I did for many years used to worry about where our rubbish (trash) goes but then over time come to realise that it would take everyone to do their bit, impossibility on your own.
I have loathed for a long time products, especially food now being sold in plastic packaging. I tend to opt for glass receptacles as much as possible. I don't even buy what is known in the UK as cling film for wrapping foods, much prefer to opt for a tin foil.
It has also to be remembered that something considered natural might not necessarily be less toxic to our system. For instance St. John's Wort (hypericum) and valerian (former supposed to be good for depression, latter sleeping) are not apparently deemed suitable for someone with a liver disorder.
I think I could go on (and I am not aiming at your posting here, I am just adding to some), even vaccinations for instance, most have mercury in them and then they are punctured into our system all of which I am certain the liver then has to deal with. i have often wondered about teeth fillings as over time they can start to leech into our system.
You are correct on all points, Peridot. It is a matter of doing the best we can and educating ourselves as much as possible. Thanks for your feedback!
There was a TV program a few weeks back that was reporting into products that contain a chemical called limonene. Limonene is used to make that nice citrus smell in scented candles and some cleaning products and air fresheners. Limonene is not dangerous when these products are manufactured but it reacts with ozone in the atmosphere to create formaldehyde, which IS nasty.
Think the program (struggling to remember so need to look it up!) was saying that if you use these smelly products a lot, that do contain limonene, especially in small rooms with little or no ventilation, then the people using those rooms may well be breathing in far higher levels of formaldehyde than is safe.
If anyone else watched the program, please put me right if you can remember more.
But clearly if you have a compromised liver, then breathing in dangerous chemicals is not advisable.
Should I take this Urso?
from Canada
Still being tested for PBC-scared it could be PSC instead.
Greetings from the US and a relatively newly diagnosed BPC patient
Skin pigment changes
