Has anyone tried any natural or "alternative" treatments? Were any of them helpful?

[lesleyg]

Hi Kat

I went undiagnosed for a good ten years before finally getting some answers.

In desperation I tried quite a few alternative treatments and nothing made any different (except fish oil which I'll explain below).

I asked my specialist about taking ginger tablets to help the circulation (cold feet) and she 'fired up' a bit saying she didn't want me to waste my money on alternative treatments.

To a certain extent I have to agree with her because of my experience. Also my brother who had sarcoidosis spent quite a few hundred dollars years ago and got nowhere. If you are on medical treatment herbs etc can interfer so be careful.

Before I was diagnosed properly I tried fish oil and probiotics. I'm fairly sure I got the information off the American BD website. Now I'm wondering how come I was looking there but BD was one of the diseases I had come across by trying to help myself - with the help of 'Uncle Google'.

One had to take something like 36 fish oil capsules a day and I definitely felt the foggy brain improve. I asked a Neurologist about it and she said it could help but the amount of oil one had to take was pretty prohibative.

Also with the probiotics - I have just started taking one a day - how does one know if they are working?

Hope that helps

Lesley

PS Personally I lean more towards medical help and then ask if it is OK to take supplements.

[andreafm]

I partly agree with Lesley

For me I think it really does come down to the difference between an alternative remedy and allopathic drugs.

I find that many things can compliment the treatment that we are having from our doctors but in my experiance doesn't dampen down the immune system, which is what a lot of us are being treated with [i.e immune suppressants, immune modulating drugs].

As Lesly has said some herbs can intefere.......It was told to me by my Rheumatologist that is important that we do not take any supplements that profess to boost the immune system [i.e echinacea etc] as that can make autoimmune disorders worse. I always tell my doctors what I am doing and as of yet haven't had much reaction either way.

For instance as lesley said Ginger is well known for warming us up and helping the circulation. But it is also for nausea, and assists in the stomach emptying quicker which helps bloating. I take this frequently but particularly in the winter as it does warm my toes and also helps with nausea and bloating etc. I don't spend a lot of money on any alternative remedies and tend to use spices or herbs, within the natural world that would be in our food in anycase.

I add fresh garlic and other herbs and spices to my cooking and make teas from powders and herbs that you would get from the supermarket or local Indian Food Shop [even cheaper].

I have also had good results from Homeopathic Remedies or Cell salts, for instance there is a combined one for Sinus and Cattarh which you place 4 under the tongue up to 6 times a day and for me that works wonders, but do not cost too much.

I also take a basic combination multivitamin with minerals which I think helps because the drugs I am were tending to produce vitamin dificences and electrolyte problems in my blood tests. Since I have been taking these I haven't been getting the problems in my blood tests. My doctor is aware of this and was very interested to hear what I had to say about it.

I also use self massage with essential oils and epson salts in the bath, which is great for fatigue, depression and pain. A lot of people know me for my obsession with Tea Tree oil which I have found useful for a whole realm of problems, in particular ulcers, infections etc.

A lot of people expect an immediate sollution to their symptoms and natural remedies tend to work more subtley and better over time rather than masking the symptom as such.....I think this is why a lot of people say the don't work.

I have tried and researched a lot over the years and also spent a lot of money in the past, but for me now I keep it as natural as possible. I read up extensively on everything that I decide to take, before I take it.

Thank you Kat .....This is a really big subject and one that is really interesting to me as I was left for many years with a diagnosis of Chronic Fatigue Syndrome [or ME]. The Medical System claimed there was no answer for me and left me to get on with it.

I felt I had little alternative then, but to find my own solutions and so have a world of knowledge about this subject that I have mastered for myself over the years.

I could go on forever but will finish for now and let someone else give their opinions.

Great Subject Kat

Andrea

[Hidden in reply to andreafm]

Thanx Andrea!

My mom did suffer with Chronic Fatigue Syndrome when I was teenager. She found a Holistic Doctor who helped get her better when the medical community had, much like they did you, told her there was nothing they could do for her. When I was 17 I had a grapefruit sized cyst on my ovary which the Doctors wanted to remove via surgery, along with my ovary if necessary. Instead I went to the same Holistic Dr. who had helped my mom and within six weeks of strict diet and herbal supplements, the cyst was gone. So I DO have much faith in natural healing.

I am now 38 and am still surrounded by people who believe in the benefits of alternative medicine and who are giving me lots of information and suggestions right now. As well I have been devouring any reading I can get my hands on. Like you said, I believe it can act as a compliment to the treatment I am getting from my Doctors.

So far I've begun taking a high quality Vit C, Tumeric extract (which is NOT immune boosting, but anti-inflammatory) and pro-biotics with each meal. The probiotics seem to help me tolerate the colchicine a bit better. I am trying to follow an anti-inflammatory diet which means no wheat, diary, sugar or red meat. (quite sad about the red meat part!) I have found that sugar is a major trigger for symptoms for me. Which makes sense as sugar is pro-inflammatory and an anti-nutrient, depleting our already compromised bodies of valuable vitamins and minerals.

I am also trying to like yoga!

I have just started all of these things after coming off of the worst Behcet's "episode" I've experienced so far. Four days of Hell on Earth. (I'm sure you can relate). So as of yet I am not seeing results either way. I will keep you posted!

I am interested in the tea tree oil ~ can you tell me how you use it, for which symptoms and especially the ulcers (ohhhh I HATE them!!) and which essential oils you use for massage?

Any other tips and pointers please feel free to go on forever!

Thanx for the great answer Andrea. I look forward to more chats with you!

Kat

[devonshiredumpling in reply to Hidden]

I didn't realise that about sugar! Thank you for that, now I know why when I overdose on the stuff (I rarely use it) I get urethral ulcers! I knew there was a link cos it happens every time but I was trying to convince myself it was a coincidence. Yeah, right...

[Hidden in reply to devonshiredumpling]

Yes, sugar is sweet poison! Bad for everyone but especially those with health issues. Hard to imagine a world without birthday cake or chocolate chip cookies But it's gotten to the point for me where it's just not worth the price my body ends up paying.

Glad you found some useful info in my post!

[devonshiredumpling in reply to Hidden]

Well, I knew it was 'deadly white stuff' (or another deadly white stuff ) but I hadn't realised the inflammation bit or even begun to put it into context with my BD. I rarely eat it but every now and then I have a real craving and if I can't get hold of doughnuts I have sugar sandwiches! (My nan introduced me to them when I was 4 and rationing had only just ended - giving me sugar was, she thought, a wonderful thing to do!).

But after every episode of this - about every six weeks approx - I would have the most dreadful urethral pain. My urethra is my major BD site and where I get most of my ulcers. I have to self-catheterise as it is but after a sugar glut it's difficult to even insert the catheter tip! Inflammation. Duh!

[andreafm in reply to Hidden]

That's really interesting about your mother having been diagnosed with Chronic fatigue syndrome particularly that you are suffering now with what is classified with an autoimmune problem.

My secret thoughts are that when the immune system goes wrong it produces many symptoms which the medical system tries to fit into their conditions that they have diagnosis for. If it doesn't fit into the conditions that they have tests for then you are left undiagnosed.

I may upset people with what I have to say and I personally secretly worry a bit about my son's immune system, because if my immune system was in overdrive when I had him, the chances are that this may have affected him then....I do hope it hasn't but mindful that it may have.

Turmeric is excellent for inflammation and is lovely flavour to put in foods but you are not going to see a result overnight and it may not deal with the problem without assistance from allopathic drugs...ie it will compliment rather than take place of them.

People in India in the past had little access to allopathic medicine an thus used herbs and spices to add to their foods to help with many well known symptoms.

I too avoid sugar although I crave it a lot of the time. I use honey or go without it which seems harsh but as time goes on without using it...you stop wanting sweet things.

I need to say that you can tell your doctors what your are doing as I am only saying what I do and with the acknowledgement from my doctors.

I use pure tea tree oil for many things....a drop on my toothbrush before the toothpaste and a few drops in warm water as a mouth wash. I also add it to my usual shampoo's, conditioners, shower gels and bath.....and much more

you can private message me if you want to so we don't clog up this posting and stop other people giving you their views because I think they are all valid.

Andrea

[devonshiredumpling in reply to andreafm]

About your son: my number 2 son has Asperger's and my number one son is 'of a delicate constitution.' I might start a blog post about it tomorrow

[lesleyg]

Just reading all of the above.

I was officially diagnosed as diabetic today.

I've been so ill every time I feel like something sweet I'll just remind myself of the past couple of months and I think it will be easy to say NO (I've always had a very sweet tooth).

Have never been able to relate an attack to anything in particular but it will be very interesting to see what happens when I go 'sugarless'.

Lesley

[Hidden in reply to lesleyg]

Lesley

Sorry to hear about the diagnosis.

You will find with sugar the less you have it, the less you crave it. Although it's always hard at first. I have a sweet tooth myself but after a few weeks without sugar things like fruit and even some veggies begin to taste super sweet and yummy.

The one thing I have really missed is Ginger Ale. Whenever I am sick I find it so comforting and soothing and it makes my stomach feel better. But it is basically a glass of carbonated sugar water! So I've had to keep reminding myself that it's not worth a mouth full of ulcers and three days on the couch.

Good luck going 'sugarless'!! I hope you see positive results

[andreafm in reply to lesleyg]

Hi lesley

as if you didn't have enough to think about

High doses of prednisolone can also cause high glucose counts and while I was in hospital last month was having very high IV steroids and had to have on the spot checks for diabetis.

[lesleyg]

Hi Kat

Fortunately I've never been one for sugary drinks but love a jube or piece of cake (and chocolate!).

Yes I do know the less you eat sugar the less you crave it and also in the past when I have cut back and then tasted something it is 'too sweet'. Now I have an incentive.

Cheers

Les

[jellybean67]

Hi, I went to my GP yesterday for pain management advice. I didnt want any Codeine based meds or anything that may cause drowsiness as I desperately need something that will allow me to function as good as possible during the day. She suggested Arnica for when my body feels " bruised and battered " and Rhus Tox for joint pain and stiffness. Have started taking them today so fingers crossed. Im very lucky as my GP is fab. I think they take a while to kick in , will let you know Alison xx

[naturalist]

Yes I strongly recommend only natural and herbs and natural DR along with a herbalist where you can get good quality herbs I live in a area in Washington where I have found all of this to help me through all of theses symptoms I also went to a accupunturist last year and it saved my life I feel I would have died with out his heeling I hope you are getting all you need to survive this journey of coping with behcet's I take frankincense for clearing out bacteria you just put it on the bottom of your feet at night and it is a anti inflammatory as well you get it at a herbalist store