Hi new here

[mati]

I am so pleased to find this forum as I am feeling desperate.

I have been having coneal erosions for about a year and the drops and ointment I got from the GP did not help. The thing which helped was to avoid sugar but I am finding that hard. I have late stage Lyme Disease and autoimune thyroid disease.

I stopped laculube due to the contents and started on castor oil but see it is not hexane free so must change that. I bought Thealoz from an optician a few days ago and so far have not had an erosion. I have ordered Muro 128.

I need a proper diagnosis but the problem is that due to Lyme I am extremely sensitive to chemicals so the drops they use in the exam will not be acceptable. I also have very fatigued adrenals due to Lyme and my pupils are distended which will make it very painful to be tested.

I just dont know whether to go it alone which I am already having to do for my other health problems due to lack of understanding about the chemical problem and how severe it is and just try things to find what works to heal the cornea.

I like natural remedies and see that vitamin c is advised so I have increased it and am taking vitB12 - the best way is to use the cyno one under the top lip till it desolves - maybe the whole issue is caused through a shortage of B12. I think that many of our problems are due to these shortages.

Any thoughts would be welcome.

[jenny2008]

gosh im so sorry. ihave sjogrens and mgd.. my left eye is soo bad.. i drop constantly.. every few minutes at times..
i am trying a special diet through my naturopath doc. i still eat most fruits (not bananas) and veggies, sweet potatoes and organic meats and seafood..
i am hoping this will help but it's only been 2 weeks...i love sweets and when i feel this badi just want some chocolate..

i have tried so many things i dont know.. i am at a loss myself. just wanted to reach out to you..

[littlemermaid]

Mati,
Hi, so sorry to hear of your battles and dearly hope you can find good ophthalmology help and support. I'm absolutely astounded that your GP hasn't done this for you. Assuming also that the GP hasn't got equipment to examine your eyes.

the drops they use in the exam will not be acceptable

Just to say that you can be examined without dilation drops, as they do with my daughter, paediatric (sounds like you wouldn't need them anyway). And we request this particularly when the eye surface is bad. The one they would miss is the green dye that enables them to see dry spots and damage and the swirls on the tear film. I wonder if there's a PF alternative. Newcastle university and hospital network has an amazing cornea research programme. At minimum, you could have a good assessment and advice, and access to the latest preservative-free alternative drops if you want them. At best, with a good consultant and team, you would feel like you have come home. Any GP or optometrist could refer you.

I would write in advance to talk about advanced Lyme disease, thyroid condition and chemical sensitivity to drops so they're ready for this. This could be in an exploratory letter to eg the Eye Department, Royal Victoria Infirmary, asking who the best docs would be to treat you. These are things they will know about but it is important to first locate the right consultant and team with an interest or understanding of your conditions. Then get a referral. Easy if you have a reply from Newcastle. I don't think there would be any of the sort of tests you are worried about apart from checking what you can see with charts. Ophthalmologists are into what you can see, and having a very good look with the slit-lamp microscope. Would this be any help? What do you think? http://www.newcastle-hospitals.org.u...-the-team.aspx (If you want to go straight in at the top on ocular surface disease for advice, and why not, write to Francisco Figueiredo and team, look how his research interests suit you. http://www.nesci.ac.uk/about/team/ac...b_publications) I do strongly feel that a good conversation and advice on managing your conditions are what's needed. Warmest wishes for comfort and healing.

[Hopeful2]

HI mati, Sorry to hear about your erosions. I think going as natural as is possible is really important. There is a web site called 'Natural Eye care' that has a lot of general health and eye health suggestions. The web site is run by an optometrist who also does accupuncture. He includes lots of natural remedies in the products that he sells on his site. He is also available for free telephone consults. I have found his advice to be useful. It is worth it to spend some time going through the information on his site.
http://www.naturaleyecare.com/

[mati]

Many thanks for the replies and links. I will read them. Its good to hear that others prefer to `go the natural way`. Jenny I make my own chocolate with raw organic cocao butter and powder using laguma for sweetner. It is very good for you so no need to give it up!

littlemermaid wow thanks so much for that - itnis really helpful and I have already emailed Francisco Figueiredo. I had not thought about writing first. I have an appointment with my GP this week and will tell her what I am doing and hope to get a referral when I find the right doc.

I have a lot of struggles getting my health condition accepted in fact I wont as the NHS does not accept chronic Lyme Disease. They say I have CFS and my GP recently sent me to a Consultant Physician for a review. He referred me to the CFS clinic where an occupational therapist listened to me and agreed with me that I do not come under the criteria for CFS as fatigue is not my primary symptom and that I have Lyme. So now I am saying to my GP, why do you accept a clinical diagnosis of CFS when I dont fit the criteria and yet ignore a clinical diagnosis of Lyme in Germany where a blood test was done to show Lyme antibodies and so therefore why are you not investigating what is wromg with me? Chemical sensitivity is common with late Lyme. Anyway thanks again all of you.

[littlemermaid]

Mati,
The best research and practice to read up on Lyme disease is, I think, in the USA where it's on the increase and there are dedicated clinics and forums, history of misdiagnosis on various tests, esp late stage. (I read up on this when one of the kids got a tick and I've still got nagging doubt.) The NHS is supposed accept chronic Lyme disease http://www.nhs.uk/conditions/Lyme-di...roduction.aspx 'If both the results of the ELISA test and the Western Blot test are positive, a confident diagnosis of Lyme disease can usually be made.' Maybe consider the London School of Hygiene & Tropical Medicine, altho I would've thought Newcastle could handle this.

We all wish there were tear substitute eyedrops made of biochemicals like the natural tear but it'll be a while before that happens. Meanwhile you can describe your experience as 'chemical sensitivity or allergy' in the eye clinics and tell them what tear sub drops you have safely used already.

Wish you the best of treatment but maybe keep an open mind and listen to good docs on what would help you ongoing. Erosions not good. Needs doc help with management to look after your corneas. You might need to press on ophth referral with GP, depending what state you're in now. Hope it works out for you, the Newcastle team are very cool

[mati]

Although they will say yes the patient has Lyme Disease, after a positive ELISA and Western Blot, if it is in the early stages, and treat with antibiotics, for a short time but after this or in my case when it was years ago ie 12, they are saying now that the bacteria cannot still be there. There is no-one receiving a chronic Lyme diagnosis in this country of late. They will only admit you are suffering the results of a previous infection. So even with a test showing antibodies, which is not very likely in the later stages it will not get you a diagnosis.

There is much more knowledge in the US but even there you cannot get sufficient antibiotic treatment, usually it is for a month because the insurers wont pay for more than this. There is a huge political issue behind it all.

What has happened with your child after their tick bite?

The problem for me is that with a CFS label, there is the somatising suspicion and the difficulty faced also by those with mental health problems to get symptoms taken seriously and further tests done.

My new GP seems promising however as she sees that I have done a lot of research with Lyme and CFS and at least she sent me to the Physician and is taking moire notice now that I have the CFS clinic on my side, discharging me as they have.

I do hope I can help from and ophtha. who takes my chemical senstivity seriously and not like the dentist who did not believe me and carried on to give me a local anesthetic containing preservative and adrenaline which nearly caused me to pass out. I have had too much disbelief to not be cautious with doctors. Thanks again for great advice.

I have just had an automated reply from Francisco Figueiredo saying he will be back on the 12th.

[littlemermaid]

FF saying he will be back on the 12th

Hmm. May be on tour with his stem cell research and all. I'd've hoped one of the team who's working the clinic would've picked that up but could be the secretary isn't checking his emails or it's considered to be personal in his direct mailbox; the specialty registrar could point you in the right direction.

Child/tick bite: nothing, negative test results for bacteria week after the nasty little b. was removed, no target rash. Can't help wondering tho.

the dentist who did not believe me

So how are they on anaphylactic shock procedure? worth asking. We are describing LM's chemical and systemic sensitivities as allergy or 'reaction to' when the nurse or pharmacist fills the form in.

[mati]

A test so soon after the bite has a high chance of being negative. Was there a bullseye rash? What symptoms doe she/he have now apart from sensitivity?

My heart rtate went from 60 to 120 and I was in distress but the dentist said in a letter to my GP that I had no reaction.

[littlemermaid]

Systemic sensitivities to drugs - raised CSF pressure on tetracycline, macrolide, stress, virus; pressure urticaria on eye steroid prednisolone (gone). No improvement on anti-allergy meds - oral loratadine, topical anti-allergy eyedrops.

Topical skin sensitivities - stinging on contact with many bathroom products, esp red face on contact places; chronic acne rosacea with meibomian gland dysfunction (3y - derm controlled only by topical erythromycin + antibacterial wash 2/daily + moisturiser, eyes on daily steroid + antibacterial + mgd warm compresses). Moorfields ophth currently describe these cases as 'hypersensitivity'.

Unexplained waves of tiredness, could be post-viral, anxiety, stress. Saw a good neuro about this and he says it's normal to be anxious with all this medical stuff going on and we need to practice relaxation techniques and have more fun times. Sounds like her case is different tho. Dearly hope you get a good support from your new GP and you can work on this together, she sounds great.

[mati]

You are right to be suspicious. I always say a mothers instinct must not be ignored. I would get a Western Blot from iGeneX but even if that came back negative it should be further investigated. Lack of proof does not mean proof is lacking. Believe me this illness is terrible and presents in different ways. Good luck.

[littlemermaid]

Very good advice, thanks.

[mati]

You`re welcome. I hope she has not got it but if she has, then the sooner you find out and start treatment the better. Look at Lyme net flash.

[mati]

Appointment with GP

I saw my GP yesterday to ask her to refer me to consultant eye doctor and she thought it was not necessary because I said I had not had an erosion for 5 days since using Thealoz an optician sold me. I said that I would like a proper examination and diagnosis so that I can address the problem instead of just going through eye drops so she gave me a referral. This mornng I had a megga erosion but I had not used the castor oil last night because I thought the Thealoz was healing the cornea and the GP looked aghast when I told her what I was doing, She has given me some drops for night use so I will see what they do. They have 0.1% sodium hyaluronate preservative free.

I am so fed up with the CCE`s they are really getting me down and especially whenI have a serious chronic sickness to deal with. Hoping for some improvement soon.

[littlemermaid]

I would like a proper examination and diagnosis

I am horrified. Why would a GP or optometrist not refer this, it's been a year of neglect. You have uncontrolled keratitis and cornea surface damage. You need an eye doctor who possesses an ophthalmoscope and a few more years of hospital training. The GP seems otherwise of sound mind so may well be gutted when she gets the cornea specialist's diagnosis and treatment plan (maybe get used to the idea there might be a short course of steroid eye drops involved to get the inflammation under control).

Good luck, Mati, you're on the right track at last. Keep in touch. Do you have to travel miles to a cornea specialist? Is it easier to get the train to Newcastle 'centre of excellence', as they are calling the regional specialist clinics these days. There's no restriction at all on which hospital you use and you can request any anterior segment team you want thru GP letter or Choose & Book - see NHS website, and also dry eye referral criteria http://www.nhs.uk/Conditions/Dry-eye...lications.aspx