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-   -   Ella is scared about moving on to biologics for her psoriasis. (http://www.addforums.com/forums/showthread.php?t=190588)

Unmanagable 03-02-18 11:18 AM

Re: Ella is scared about moving on to biologics for her psoriasis.
 
I thought I was beyond all help, too, in many regards, especially where I'd been desperately seeking medical help unsuccessfully for years on end, until I drastically changed my diet and stopped using all of the highly artificial products, both inside and out. That's where I found my most sustainable saving grace, so to speak. I felt like it was either change my consumption habits or die an early death, and I don't think I was too far off in my assumptions.

I'm surrounded by folks in real life who "just can't give "that" up", and tend to think I'm crazy for doing so, "because it tastes too good", yet they continue to suffer like a mofo day in and day out with various forms of serious auto-immune related issues and tons of other ongoing and growing issues.

They'll very happily try any and everything else a doc recommends, other than eliminating products and ingredients for a long enough period of time to see how their body actually responds, usually expressing that it simply feels way too extreme/too limiting/too expensive/too uncomfortable/insert other reasons here to give up something they really like to taste, slather on, or smell to see what help may or may not come from trying.

That's why I stress it in damn near every response because of the dramatic and positive differences/sustained relief I personally experienced from many things that had been repeatedly diagnosed to be life-long struggles that would only serve to further debilitate me and would definitely require ongoing pharmaceutical/over the counter meds of some sort. I've since learned differently on a much grander scale than I ever thought was possible.

Food and all the products we use cause many chemical reactions, and some can be very similar to what we're being told to take (hence the reference by Hippocrates to "let food be thy medicine", in my opinion), those just aren't often discussed by medical professionals because they aren't taught that much about it in medical school. Just ask them. I never believed any of that stuff would work, either, until it did.

Apple cider vinegar is fully stocked in my bathroom and kitchen. Great suggestion. It's used topically as a hair rinse once or twice a week and a skin toner every other day or so (diluted with a little water), and taken internally as a shot in the morning right before my lemon water and herbal infusions, and/or in various recipes now and then. Good and powerful stuff. It was a huge help during my second gall bladder attack, too, in helping me not have to take another trip to the ER.

I know it's scary as f*** and way more complicated than it needs to be. I wish her well in finding relief. I really do. I strongly feel until we as a species can finally learn that what goes in and on our bodies (be it substances/thoughts/scents/energetic exchanges/etc.) must come out in some form or another, we'll continue to suffer greatly and feel helpless and desperate more often than not.

I also strongly feel there's a reason the stuff that makes us the most ill is the stuff that's "conveniently" made most affordable, as it helps create much return business for many, but that's a whole other thread. "Let Them Eat Junk" is a great book Abi shared with me years ago that was quite an eye-opener in addition to all the other mountains of stuff I read and tried while I was too sick to venture out.

Unfortunately, society as a whole puts most of that knowledge, as well as the cleaner options, just out of reach by not offering those types of methods via insurance-approved options, regular "wellness" visits, or other affordable outlets, and that really p***** me off. Not many folks can afford to fund or have their names attached to studies that could potentially put several industries out of business.

aeon 03-02-18 12:13 PM

Re: Ella is scared about moving on to biologics for her psoriasis.
 
I used to use Pantene...but then they added methylisothiazolinone.

Now, Iím OGX. http://www.sympato.ch/smileys/Yaisse.gif

https://www.ogxbeauty.com/wp-content...ampoo-13oz.jpg


Cheers,
Ian


p.s. for some reason the forum is not rendering images and has removed the img tag from the editor.

Lunacie 03-02-18 12:25 PM

Re: Ella is scared about moving on to biologics for her psoriasis.
 
Quote:

Originally Posted by aeon (Post 1987244)
I used to use Pantene...but then they added methylisothiazolinone.

Now, Iím OGX. http://www.sympato.ch/smileys/Yaisse.gif

https://www.ogxbeauty.com/wp-content...ampoo-13oz.jpg


Cheers,
Ian


p.s. for some reason the forum is not rendering images and has removed the img tag from the editor.

From what I can find, most of those products have coconut oil or cocoa butter,
and scent of some kind. All of which I'm allergic to. :(

Little Missy 03-02-18 01:07 PM

Re: Ella is scared about moving on to biologics for her psoriasis.
 
Garnier Fructis Volume Extend. They quit making it and I just had a feeling they might so I bought 6 giant bottles a year ago.

I can see the image Ian. I've seen it here.

Lunacie 03-02-18 01:18 PM

Re: Ella is scared about moving on to biologics for her psoriasis.
 
Quote:

Originally Posted by Little Missy (Post 1987248)
Garnier Fructis Volume Extend. They quit making it and I just had a feeling they might so I bought 6 giant bottles a year ago.

I can see the image Ian. I've seen it here.

Yeah, that's happened to me, I've found something I wasn't actually allergic to
and they stopped making it. Ugh. I think my daughter used to use that and the
smell was something I could smell all the way from her bathroom to my desk
here in my room, over 70 feet away. She is allergic to some things, but usually
not the same things that affect me.

Scootdeedee 03-03-18 05:14 AM

Re: Ella is scared about moving on to biologics for her psoriasis.
 
Quote:

Originally Posted by sarahsweets (Post 1987222)
Thanks for the support call Mis. I will try the apple cider vinegar. We have at least a month before any decsion has to be made because she needs blood work and of course you have to deal with insurance. At this point Im desperate. Imagine if apple cider vinegar worked?? I would be thrilled.If it does work what's the follow up like? Every day still or once a month? Once a week. I think its hard for people to understand the gravity of the situation here. Unmangeable: I know you are very diet oriented and you know I have taken your advice about somethings (Im considering going vegan at this point) but in this case I think we are well beyond the point of diet addressing anything like this.

Hi, Iím new here but I feel I must reply to your comment above where you say that your daughterís issues are well beyond being addressed by diet modifications.

I couldnít disagree with you more!

Food/diet can have a massive immediate and or chronic impact on health even to the extreme of anaphylactic shock leading to death with allergies.

Autoimmune diseases are epigenetic just like adhd, thatís why different autoimmune diseases run in families. Itís not a coincidence, there is usually a common allergen or intolerance usually gluten or dairy or soy.

Most immune cells are also found in your gut as a first line defence against foreign bodies including food proteins. Unfortunately people with autoimmune disorders also tend to have more permeable gut linings leading to larger proteins being absorbed and stimulating the immune system adversely. Steroids also make the gut more leaky.

So a mismatch between your diet and your epigenetics leads to diseases like psoriasis and celiac etc.

My husbandís family has many autoimmune diseases with his mother suffering from 3 of them. He has celiac and psoriasis himself which have both been put into remission by following a strict Autoimmune Paleo diet.

It may be initially challenging but it sure beats a lifetime of expensive toxic drugs. Plus the only long term side effect of dietary modifications is weight loss and good health :)

I would urge you to google psoriasis gluten intolerance and celiac disease and start researching the links. There is a good chance that this is the root cause of your daughterís issues. Just like with Adhd, do not rely on doctors to know everything or what is best for you or your child.

Can you see that treating the symptoms of psoriasis will not and cannot cure it, or prevent further immune system damage?

I hope that my experiences in helping my husband may help you.

sarahsweets 03-05-18 11:05 AM

Re: Ella is scared about moving on to biologics for her psoriasis.
 
Quote:

Originally Posted by Scootdeedee (Post 1987340)
Hi, Iím new here but I feel I must reply to your comment above where you say that your daughterís issues are well beyond being addressed by diet modifications.

I couldnít disagree with you more!

Food/diet can have a massive immediate and or chronic impact on health even to the extreme of anaphylactic shock leading to death with allergies.

Autoimmune diseases are epigenetic just like adhd, thatís why different autoimmune diseases run in families. Itís not a coincidence, there is usually a common allergen or intolerance usually gluten or dairy or soy.

Most immune cells are also found in your gut as a first line defence against foreign bodies including food proteins. Unfortunately people with autoimmune disorders also tend to have more permeable gut linings leading to larger proteins being absorbed and stimulating the immune system adversely. Steroids also make the gut more leaky.

So a mismatch between your diet and your epigenetics leads to diseases like psoriasis and celiac etc.

My husbandís family has many autoimmune diseases with his mother suffering from 3 of them. He has celiac and psoriasis himself which have both been put into remission by following a strict Autoimmune Paleo diet.

It may be initially challenging but it sure beats a lifetime of expensive toxic drugs. Plus the only long term side effect of dietary modifications is weight loss and good health :)

I would urge you to google psoriasis gluten intolerance and celiac disease and start researching the links. There is a good chance that this is the root cause of your daughterís issues. Just like with Adhd, do not rely on doctors to know everything or what is best for you or your child.

Can you see that treating the symptoms of psoriasis will not and cannot cure it, or prevent further immune system damage?

I hope that my experiences in helping my husband may help you.

Yes, I can see that and let me be clear on one thing: She decides. If she is too scared then thats her choice and i am not the kind of mother to usurp he power of her own body. I did the same things with my kids and adhd meds. When they decided to stop taking them in their teens I did not force them to continue even though I did and still do think they need them. Ella has adhd too but was never on stimulants because she couldnt tolerate them. I will look into dietary changes to try and I am also going to start the apple cider vinegar rinse that is being recommended. I want whats best for her, but she is at the age where she gets a say in her medical care. I just wanted people to know this and not think I was going to push her into these medications just because I am her mother.

kilted_scotsman 03-06-18 06:32 AM

Re: Ella is scared about moving on to biologics for her psoriasis.
 
Yes.... check out the dietary stuff.... if you think about how our cells live in a soup of nutrients and other compounds dissolved in the solutions of the body....... our cell membranes are permeable and adapt to their environment through highly sophisticated processes that alter the cell wall permeability depending on environment an the cells need.

Our skin is a sort of specialised gut wall what we eat and/or rub on our skin affects the cells of this lining, just as much as it affects the internal linings. The same applies on a microscopic level to the cell wall linings throughout our body.

With things like psoriasis/excema/leaky gut/IBS etc attention to diet and compounds used on the skin needs to be the first approach..... unfortunately the creams etc tend to treat the symptom, not the cause.... so people may have success initially, and continue to eat/apply the problem causing ingredient which continues to weaken the cells that form our primary barrier..... and continue to get into our bloodstream over time this affects other parts of our body.

When skin/gut is showing signs of distress, this is a symptom of something..... not the thing itself, if you get my drift.

sarahsweets 03-08-18 04:45 AM

Re: Ella is scared about moving on to biologics for her psoriasis.
 
Someone on this thread mentioned a psoarisis paleo diet? Am I crazy? I cant find it. Can someone post a link?

Lunacie 03-08-18 11:55 AM

Re: Ella is scared about moving on to biologics for her psoriasis.
 
Quote:

Originally Posted by sarahsweets (Post 1987897)
Someone on this thread mentioned a psoarisis paleo diet? Am I crazy? I cant find it. Can someone post a link?

Maybe a mis-type? I found a whole slew of links with "psoriasis paleo diet".


https://www.google.com/search?q=psor...hrome&ie=UTF-8

Caco3girl 03-08-18 03:27 PM

Re: Ella is scared about moving on to biologics for her psoriasis.
 
Now we are talking MY alley. Methylisothiazolinone is an effective preservative. It is not part of the ingredient list that actually cleans. Many water based liquids with a pH of 4-10 can and will grow mold and bacteria if there is no preservative added.

Triclosan is also one of the bad" preservatives...really anything that is a formaldehyde creator should be avoided. Johnson and Johnson got into HUGE public trouble a few years ago when it was discovered that they sold different versions of their products in the UK, but sold the banned material in the US...and even had it in their baby shampoo.

If anyone wants to send me a message asking about other ingredients or the safeness of them feel free. THIS is what I do for a living, I am a formulation chemist.

maple17 03-16-18 04:08 AM

Re: Ella is scared about moving on to biologics for her psoriasis.
 
I can empathise Sarah. We're facing something similar with Miss 13 and the IV bisphosphonate that we are likely starting next month. The side effects are not great, but as she has wedging in her spine already and the start of compression fractures, doing nothing is not an option. So, it's lots of hoping for the best here. Luckily, Miss 13 is not against the meds. She's already lost so much with being restricted in activities in her daily life.

natnatroswell22 04-27-18 01:52 AM

Re: Ella is scared about moving on to biologics for her psoriasis.
 
I'm so sorry to hear that sarah, I am hoping for your daughter's fast recovery. Just keep elavating her hopes and keep giving her advices. Every pain has cure and it always involves risks upon healing it :) fighting.


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