natural herbs and vitamins

[naturalist]

It is most important to try and go natural I have fount that most prescriptions caused more severe reactions and pain and crippling effects I really do not take any of the steroids or anti inflamatories I currently just eat cilantro a lot of it a bunch per day it is a natural anti inflammatory cucumbers too I was not a beliver of any of this but through trials and errors I find no medication works best I do take a powder probiotic purchased from health wave on line tru biotic and p5p vit B folic acid all are dye and additive free (this is very important) I use a plant based digestive enzyme vit D 5000 and a very strict and balanced gluten free way of eating along with grass fed meat (not everyday) I eat more vegitables and fruit and nuts than any thing else and when I eat well I feel better I can not spell so bear with me I hope this all helps

[newtoBD]

Do you eat dairy?

[BElgium8]

I still haven't figured out if I have BD or herpes however I've gone the natural route too. I agree western medicine is very toxic there are holistic approaches. It's tough for me right now but I'm sticking to no sugar ( cereal, sweets, added sugar, juices etc) only olive and coconut oil grilled/baked fish chicken turkey at least 2 servings of spinach and kale a day, I eat eggs, some yogurt or kefir and milk in moderation. Gluten free I think is ultimately going to be the best part. So cutting out bread and pasta as well or switching to their gluten free variants. More than 8 glasses of water absolutely no caffeine, berries here and there but limit on fruits due to sugar content. I have added echinacea and a ton of vitamin c and fish oil all for a boosted immune system. I've read about so many getting success out of these changes ... I hope this works for you and everyone else too. Ohhh and my biggest issue is stress so I'm meditating morning and night now.

[Hidden in reply to BElgium8]

I would be very careful with echinacea especially if you are taking immunosuppressants as well. I am surprised you want to " boost " your immune system as Behcets means it's already in overdrive ( it's an autoimmune condition ).

I have to laugh when people talk about " toxic " western medicine. Until the advent of prednisolone etc most forms of Vasculitis ( Behcets is a variant of Vasculitis ) were fatal. It's all about risk V benefit. I would love to see a randomised, controlled, double blinded trial supporting the " natural " treatment of these potentially life threatening diseases.

I think the evidence that exists supports a healthy, well balanced diet for everyone, regardless of underlying health problems.

[BElgium8 in reply to Hidden]

I don't take meds yes toxic as the endless possibilities of more ailments and diseases as a direct result of taking medications ... kidney failure liver failure stroke blurred vision death migraines and so on and so forth ... I think everyone is entitled to their approach and what works for them is worth sharing that is all

[Hidden in reply to BElgium8]

Of course everyone is entitled to their approach. The problem is that people come on here looking for advice and we owe it to them to give them the best advice possible backed by research.

I would be intrigued to know what medications have the side effects of kidney failure, liver failure, blurred vision, death, migraines etc?

[BElgium8 in reply to Hidden]

The person who posted was doing exactly that ... sharing what has worked for their body, just sharing what works for one keep in mind doesn't work for everyone just as these drugs don't work for everyone and the posts about then not working are numerous ... so if u have input that had worked for you by all means share it for those who need help I stead of going against what may have worked for someone else I don't get the purpose in doing that. And I just Google side effects of prednisone alone about 50+ side effects came up from mildest to most severe... so the choice I made for MYSELF is to go the holistic route. Ultimately you can go on any forum for advice you should first follow your intuition you know your body and second a doctor you trust... I don't go and do what someone has done on a forum just because. It's called advice someone's takes it or leaves it. Have a good day!

[nurse_ratchet in reply to Hidden]

Yes...echinacea is a huge no-no for BD, Lupus and alike forms of auto-immune disorders that are "over active" and attacks it's own cells,etc. The last thing you want is to with these types 'boost' the immune system which will end up in a 'flare'. That's why prednisone (unfortunately because I hate them too), works to 'shut' it off from attacking your own body (joint inflammation,rashes,etc).

It's all about balance. Yes there is a place for natural products,vitamins,etc. There is also a place for western medicine,eg) steroids. It could mean saving a person's life-all dependent on how out of whack your immune system goes. As the state of disease varies from person to person, so do the effects of different treatment. It's not a one size fits all-unfortunately.

Having said that, I applaud anyone who finds a 'natural way' to manage their BD. I think we could all wish for that same outcome!

Always do your research on reliable sites,journals,articles etc. It is wise to give a rundown of ALL your vitamins,supplements(natural too), restrictive type diets and medications to a pharmacist. You would be amazed at their knowledge. Just because something is labeled as 'natural' , does not mean it is without interactions or side effects.

Case in point: during a bad flare, being on immunosupressants (plaquenil, colchicine and steroids), I thought it would be fine to take melatonin when having trouble sleeping. When I crossed referenced all meds I was on, pharmacist advised me that melatonin interacts with immunosupressants, in that they will not be as effective to slow down the overactive immune system.

So , just a word to the wise....information and knowledge on everything you put into your body is key😉

Best of luck to ALL!

Looking forward to summer and our organic garden! Nothing beats the real fresh stuff😊

Gen

[naturalist in reply to nurse_ratchet]

Yes I tried taking a melatonin just last week had not taken it for over a year since acupuncture but had a lot going on in my head and could not sleep o next AM I could not walk on my right leg my knee hurt so bad and was weak for over three days with wearing brace and ice and elevation helped get me through I also can not take anti inflamatories they cause severe head ache and wheezing I think this is the mastocytosis? for me it is different thing effect me different every day what doesn't bother me one day does the next day it is trial and error everyday is different

[nurse_ratchet in reply to naturalist]

You are certainly a perfect example! Thanks for sharing:)

Wishing you all the best!

Gen

[2106]

I would like to say that I also go down the natural route, for me it works best. I have had BD all my life, my first flare was when I was 15, 40 years ago. I have had 1 dosage of steroids in this time but for only 4 days. For me I have removed various products like coffee, milk, wine and the list goes on. I use a natural toothpaste Forever White Aloe Vera which since using my mouth ulcers have about disappeared, I get the odd one when I bite my lip otherwise none. I take Merc Sol 30c which is a homeopathy remedy which really helps if I get a persistent ulcer that won't go, this has also helpful with my vaginal ones as well. I never use any soap, only natural organic hair shampoo and conditioner as I found I would get ulcers on my body otherwise. All washing powder products are natural. We are lucky that our property over 300 years old has a natural spring which is tested yearly but has nothing harmful in it. We have a smallholding so grow all organic veg, we have chickens, pigs all organically fed. I know not having tablets will not work for some but with me if I take a pain killer I feel as if I have had a bad night on the tiles. I sleep when I feel fatigued this is a must, I used to feel guilty about having a afternoon nap, now I know that if my body wants to sleep it is for a reason and that is important, listen to your body. If you eat or drink something that makes you feel slightly different work out what it is. BD is all about trial and error, some things work for some and not others, but the best advice is natural products have no side effects and they just might make you feel a bit better. This forum is brilliant for knowing that other people feel the same pain stresses as you. I personally have gained loads of useful information from here. For example I was suffering terrible pains in my body it felt like my bones were hurting. Somebody suggested that I could have a vitamin D deficiency. I was tested and I did, now two months on my pain has gone. Many people will answer questions and go out of their way to help which I for one greatly appreciate. xx

[billi]

Hi and what an interesting post. Yes I agree with you and I steer clear of what I call the hard drugs. My husband and I spend a lot of time in a Spain and the diet of fresh veg and fruit, wonderful fish etc along with the dryer, warmer weather does us both well.

Billi

[duke22]

dairy does not do well for my son. i dont know if it is the behcets or not

[naturalist]

from what I have learned most people with auto immune disorder do not tolerate dairy of any kind there I a brand of non dairy cream cheese that works well called daiya yummy and so dairy free mlks and creamers too try them they are yummy

[Hidden in reply to naturalist]

Evidence base for this please? It's a very sweeping statement.

[whyzcrazyman]

Some of the reading I've done as said vitamin c is not good for people with behcet's.

[Lara1 in reply to whyzcrazyman]

I haven't been able to find any hard evidence for it, but speaking from personal experience, drinking freshly squeezed orange juice is enough to make all my BD symptoms go through the roof! Pretty much as bad as a cup of coffee or any amount of ginger.. fresh ginger is the worst! So I guess they are right when they talk about vitamin C and ginger as immune system stimulants. I stay away from them.

I do agree that controlling the disease naturally is ideal but in my experience not everything natural is good for this disease. I have had great results with vitamin D and omega 3 fish oil and some good experience with curcuma extract. I've also noticed that adding a lot of salt and concentrated sugary foods are bad especially in a flare (there are studies showing that a high salt intake is detrimental in auto-immune disease). I have noticed absolutely no beneficial effect in avoiding meat (on the contrary, low protein diet weakens my body which triggers a worsening of BD symptoms) or dairy for that matter. I do notice that I feel better when I eat more greens and vegetables and good quality meat and fish. I have also noticed a significant relief in fatigue after taking anti-fungal medication. I've looked it up and found out that candida (yeast) can trigger a lot of immune activity so getting rid of yeast is beneficial in auto-immune diseases.

This being said, my disease is too strong and although the natural stuff helps I couldn't get through my days without colchicine and NSAIDs for migraines.