Hi new here

[mati]

Thanks again.

Yes unbelievable.

I can book a taxi to take me for my appointment but the sheet I was given does not give me the RVI for an option. I can go to the Sunderland Eye Infirmary or local departments and my neighbour says I should go there as she goes and says it is excellent but I guess that depends on what condition you have.

How do I find the best opthal?

[littlemermaid]

Sorry, Mati, just saw this. For doc-shopping, I use:

hospital websites - ophthalmology, anterior segment, surface disease, inflammation, uveitis
NHS website and NHS Choices
PubMed - current research centres and individuals
DrFoster - search condition and postcode, trace NHS + private practice

In large teaching hospitals there is more chance of coordinated referral on systemic problems to other depts and testing. Otherwise we're all over the place with different parts of the anatomy, no one communicating.

Especially in under-served areas, there is big pressure to attempt chronic eye conditions 'in the community', and very little chance that 'the community' can diagnose or treat since it's hard enough for a super-specialist.

Corneal erosions and the ongoing untreated damage you have are serious. We head straight for the tertiary referral specialist centres normally, even if just for diagnosis. However, Sunderland Eye Infirmary looks experienced on ocular surface disease, doesn't it? Patient info on severe dry eye, corneal erosions, uveitis, 3 cornea consultants + thyroid eye disease specialist, so they may be OK on systemic causes. Astounding you've been suffering without ophth referral so long when these docs are here for you. http://www.chsft.nhs.uk/ourservices/ophthalmology/

NHS policy is we travel to 'specialist centres of excellence' ie where the budget goes. You are eligible for patient transport and reimbursement of travel costs? Excellent. Phone Patient Liaison for advice any time you need them on transport to Newcastle - your case would be that you need specialist treatment. I was hoping Newcastle cornea clinic would write back and advise you who's the best person regionally on your 'interesting' symptoms, but these replies from overloaded kind people take time.

This is all looking very promising, don't you think? Have you been for your consultation yet?

[LisaLis]

Hi Mati, I'm new here too. I am horrified too that your regular GP was resistant to let you see an eye doctor. That is unbelievable. You have a every right to be seen. Some doctors are terrible. I'm glad you are going. It is hard I understand where you are coming from. I get so down thinking will my eye problem ever improve? It has too. Right now am totally changing my diet. I just started with a chinese MD who is an acupuncturist and he told me that my diet is terrible. I started eliminating a lot from diet. I am hoping that helps.
Lisa

[mati]

Hi littlemermaid

Thanks once again for such outstanding help and information. My appointment at Sunderland is on March 12th so not long now. I managed to order myself some moisture chambers so hoping they will help. I have had a few bad days but am planning on doing the methylation protocol to help in my recovery from Lyme which involves a crash course in microbiology!

Lisalis I am trying to get sugar out of my diet and manage on most days. I am juicing vegetables which is a very good thing I think. I also gave up gluten 2 years ago.

best wishes

[littlemermaid]

Mati ~ Great news, it's time they started looking after you. Methylation protocol v interesting (just had to google). I wish I knew how to get more full assessment for vit/mineral deficiencies in UK. We have had bloods etc but no one seems to do a US-style work-up. My bro in Canada got vit B12 injections and was thrilled to get his childhood memories back... (time I dressed his action man in a frock etc) LOL

[mati]

littlemermaid

There is a lab in Belgium. If you want to get on Phoenix Rising cfs forum you can find this sort of info. You can buy B12 online and the needles to do the injections but Jarrow methylcobalamine (B12) under the tongue is very effective.

The theory behind methylation protocols are that an overwhelming dose of toxins or infection causes the partial block which can be lifted with B vits. Many are improving on it.

best wishes
Brenda

[littlemermaid]

Thanks Brenda, You have inspired me to go a bit more holistic... I'm looking for an MD with alternative interests who's happy paediatric. I'll let you know how we get on.

[mati]

Hi there littlemermaid

Well I cancelled my appointment at Sunderland as I am not convinced it is the best place. I want to go to the RVI.

Anyway other things are a priority now since I have the rips under control as I have been funded to go to Breakspeare in Hemel Hempstead. I am having to do a lot of research to prepare myself and find the best doctor there and as late Lyme is more life threatening I want to sort this out.

I have come off sugar and am taking Omega 3 Q10 and vit E and with the castor oil at night have stopped the rips for now.

Have you looked at Nigel Speight?

[littlemermaid]

Hi Mati,

Good to hear you have control of the eye surface and a plan for cornea attention, not just self-medicating without ophth. Altho I was thinking Sunderland looked experienced, slightly suspicious they appeared excited about lasering. Good it's not urgent any more.

But you have got referral to Breakspear on the NHS???? I am desperate. I was thinking Royal London Hosp for Integrated Medicine, but Breakspear do the tests we need. Last quote I had was £3.5k

[mati]

It is possible to get a referral but not easy.

[littlemermaid]

Very well done, ma'am. Very much hope for diagnosis and improvement for you.

[liz56]

Hi, Mati.

I sounds like you are getting a lot of good advice here. Did you ever try the Muro 128 5%? If so, how did it work for you? I use the drops rather than the ointment version, and it helps me a lot.

Best wishes,
Liz

[mati]

Thanks littlemermaid. Just spoke to them today and my appointment is June 26th.

Hi Liz

I have the Muro drops but have not tried them yet. Maybe I should givethem a go

Someone has been looking at my hair test I got done while back and she says I am probably short of B2 and that it causes dry eyes.

[mati]

Hi Liz

I decided not to use the Muro drops as they contain things I dont want in my body like parabens and boric acid. I will continue with HYDRO - TEAR from URSAPHARM as they are preservative free, last for months due to the delivery system and have been working as I had no rips for a while apart from last night but I know why it happened - I was out at night in a stressful environment and on top of that ate a biscuit! I will avoid in future.

best wishes
Brenda

[liz56]

Thanks for your response, Mati. I hope that you find something that works for you!

--Liz