Eczema

[Louise Pembroke]

I watched this programme about placebo, and this orthopaedist did fake knee surgery on a group of people. They got the general anaesthetic, they got an incision but without the internal work. The surgeon played a video of the procedure in theatre and theatre staff passed and sloshed the water, he asked for all the instruments as if he were doing it for real. The end result was astounding - the entire group of people who had fake surgery reported a positive result as with the patients who the surgery for real, 100% improvement! These were people who were in pain prior to surgery. Of course I don't know how long the effect lasts for. For one man it was lasting, and all were shocked when they told they had not received surgery. I think it's a combination of mind over matter which in some cases really can produce physical changes, and also the confidence of the practitioner and what is conveyed to the patient. It is expectation that counts for much. If the practitioners and patient have an unshakable expectation that the treatment will work, it's more likely to. This is how I know for sure that homeopathy for my ezcema was not a placebo effect because I had zero expectation of it working but it did.

[Sweet]

I do agree with the posts here on homeopathy and am glad that people here have had a lot of success with it. Working in emergency care though i am very aware of how important steroids and nebulisers are for acute episodes of asthma. We do get at least one patient a shift with a severe asthma attack and in the latest cold weather this does get much worse.

Just needing to add that i hope you have all been able to get a flu jab as asthmatics really suffer badly if they catch the flu. Also as Janet has already said please don't all just stop taking any medication suddenly as inhalers and steroids need to be reduced gradually. Also doctors do appreciate you letting them know if you are going to get any alternative treatment such as homeopathy or acupuncture as this can affect the medications you are already taking.

Gareth we don't use the word ventolin either although patients do as it is written on their inhalers! Salbutamol is what we prescribe on a drug chart as this is it's legal name with ventolin being the brand name. Same as ipratropium with it's brand name being atrovent. With most patients though we tend to ask for the colour of the inhaler as some are not sure what they are taking!

Also just to add but if you are unfortunate and end up in 'A & E' it is really helpful if you have your list of medications, what your peak flow is on a good and bad day and also a record of any admissions into hospital before, including any transfers to ICU. Hope this helps.

Sweet X x X

[Michael P]

Hi everyone, after many months of lurking I am making my first appearance on this site. I must admit I didn't realise how bad KC could get until I found this forum. Perhaps ignorance would have been bliss!
However,I digress. My wife and I are independent distributors for a company called Forever Living Products and we manufacture and sell health and nutrition products which are predominantly based around aloe vera and as such are natural products.
I won't bore you all with the reasons why I consider our products to be superior but our aloe vera drinking gels and skin creams may be able to help with all sorts of skin and digestive problems incuding Eczema, Psoriasis ulcerative colitis,Ibs and Crohn's Disease etc, as well as arthritis.
I do not hold a medical licence and am not making medical claims. However, clinical trials have shown that ulcerative colitis patients have benefited from our aloe vera drinking gel and more importantly my sister in law who suffers from Ibs has just started taking the gel and her life has been transformed. Last weekend she went on her first long walk for many years!
Satisfied customers suffering from eczema have advised FLP that either they have been able to reduce their dosages of steroid creams or even come off them completely.
My wife and I have only been involved with FLP for a short time and the feedback we have received from our own customers, so far, has been very positive, including one whose arthritic dog`s mobility has greatly improved -animals can be helped too!
Our website is http://www.enterourshop.co.uk and this will give some useful information but no medical claims are made. If you would like more information or wish to make an order please either send me a PM or email me at michaelparnes@hotmail.co.uk Oh yes and there is a 60 days money back guarantee for all retail purchases in case there is no benefit from the products. FLP say that returns are less than 1% including breakages so hopefully the products will work for forum members. If any member finds that the products help their condition and wishes to make regular purchases, it may be possible to buy at wholesale prices subject to certain conditions.
It is my intention to give 10% of any retail profit made to the support group.
Sorry for the long posting but I hope it is of help.

[Louise Pembroke]

Welcome Michael! and that's really nice of you regarding the retail profit to the group. I have heard of the benefits of taking aloe vera, and that peole with sensitive skin have found it's topical application soothing.
Where are you with your KC? are you wearing glasses or lenses? Are you under an optician and eye hospital? How is your sight?
Everyone's progress does vary considerably, it's more likely to hear about grafts and difficult stuff here because it's a place for people to 'meet', but there's also a lot of good news too like Emma and her A Levels. Not everyone needs grafts or experiences a Hydrops. You could just as easily wear lenses for the rest of your life and here's hoping you do, but if it did progress a bit further or you experience problems we are here to talk to.

[Michael P]

Hi Louise, thanks for your kind and welcoming words. You probably won't be able to shut me up now!
My KC was diagnosed about 30 years ago but my condition has deteriorated noticeably over the past 2 years. I have had to give up tennis recently because I could no longer play to the standard I was used to although perhaps I was just getting too old! I can still play golf as long as my playing partners tell me where my ball has gone-rarely straight!
I have always worn lenses. My right eye isn't great and I think my problem recently has been that my left eye has also deteriorated so it no longer carries the other one like it used to. So far I have been very fortunate and am not complaining. I think I am probably very lucky to attend Moorfields in London. From what I have seen some of the forum members who are far worse off than me have been left to get on with it themselves and thank goodness they have found the forum to get help and advice. It seems to be pot luck as to where one lives.

[Louise Pembroke]

Well I could never play tennis even as a youngster, the other kids would watch me to have a laugh as I could never hit the ball as I couldn't judge distance. I wonder how much of a problem that is to other members with or without deterioration?
30 years Michael, that's pretty good going! Is the prescription of your lenses being changed and what type of lenses do you wear?
Yes NHS services do seem to vary a lot.

[Michael P]

Yes, i've been very fortunate. I think my reactions were always very slighltly impaired but in the last year or so I found I was a bit of a sitting target at the net. Our club matches would end as the sun was setting and I found I couldn't see at all in the last set. On one occasion I was serving into the sun and I found the reflection on the court at the other end was so bright that I was unable to either see the ball land or come back at me. Very embarrassing.
I wear gas permeable lenses and have had a few changes in prescription recently but they have either left my vision unchanged or made it worse. I guess that means my vision can only remain the same, which would be ok, or get worse. I must admit to not being that well informed about my condition so I may well learn more now that I have broken the ice and started posting.

[Louise Pembroke]

Can I make 2 suggestions; see your optom and get the lens prescription and fit checked.
Secondly, try playing in an indoor court to cut down on the sun glare and put dawing pins in your opponents shoes to slow them down!! [sorry couldn't resist it]

[Michael P]

I think superglue would probably be better!

Yes, playing indoors certainly cuts out the glare from the sun so that particular problem is removed. But I love to put up high lobs so the roof becomes a problem!
Whenever I go to Moorfields (every 6 months) they give me a jolly good going over and check me with every machine in the room. They check my eyes thoroughly, shape of cornea, fit and whatever else so presumably there is nothing more to be done. I think I am well looked after and they never rush me out the door which is good.

[Louise Pembroke]

Of course, glue them to them ground, then find a high roofed court! It's possible your prescription has changed since you were last seen, or there could be some dirt on your lens. I've had my lens checked before now by the lens supervisor before an appt.