Almost no dry eye now...

[DibbieNZ]

Hi all, over the last three months I developed dry eye (0 on schirmer tests but negative antibodies for Sjogren). I'm seeing a specialist at Sydney Eye Hospital who has suggested it could be linked to my gut bacteria following antibiotics I took about a fortnight prior to symptoms starting. I'm seeing a naturopath and I am starting high dose probiotics. My GP is dubious, and the last ophthalmologist I saw told me the cause was academic and treatment would be cyclosporine. So I'm scared, I have punctal plugs in my eyes and still need eye drops at work about every hour. This is only the third day of probiotics but I thought I would reach out to you all in the hope someone might have something encouraging to say.

[MGD1701]

Hi Dibbie

So you have MGD and inflammation? If so, oil/glands status, any idea causes? Do doctors recommend you any home regimen, warm compress...etc?

It seems a trend for doctors to use cyclosporine/Restasis (new version: Xiidra) to treat MGD as they beleive
early intervention is effective/important since MGD is progressive.

If one doctors among 12 doctors I visited in the past 5 years ever gave me one of above drops,
I could have kept more glands ALIVE, unfortunately, most glands are GONE for good.

Drop: Does it help when you use every one hour? if not, maybe it is WRONG drop? if MGD, you need oil-based.

Please keep us informed of your probiotics plan, maybe it would help me. Thanks!

[Hokucat]

Hi Dibbie. I also had zero Schirmers, and at my worst 0-1 TBUT. I had severe dry eyes resulting from MGD and blepharitis, likely due to Sjogrens complicated by excessive computer use, although have tested negative for over five years for any autoimmune antibodies or other factors.

It took several years to find resolution, but for me what worked was 1) probing to unblock my meibomian glands which almost all were blocked, including with scar tissue, and 2) drinking fresh lemon juice in green tea 2x daily to change my oils from thick "Crisco-like" oil, to flowing so that my glands did not get blocked again. I think somehow the antioxidant, antibacterial, and anti-inflammatory properties of the lemon/tea got rid of the bad bacteria in my body/gut, and helped my immune system function correctly, including the oils in my glands and possibly my lacrimal glands. I may never really know, but that's my theory given I likely have Sjogrens or some other autoimmune disease. For you, it may be something different that works.

So I think you are on the right track addressing your diet and seeing a naturopath regarding gut bacteria or some other problem where diet and possibly supplements can help. They also test for different vitamin deficiencies and toxins in the blood regular medical doctors often do not test for. I honestly feel many diseases can benefit from fixing things from the inside out.

However, often help from the right dry eye specialist is also needed, like I got with the probing procedure. Like MGD1701 asked, do you know if you have MGD or aqueous deficiency? You might have an aqueous issue given your Schirmers is zero, but you could also have MGD, which is the cause of almost 90% of patients with dry eyes...has your doctor pressed on your glands to see if little, no, or thick oil comes out? Did they take your TBUT? If aqueous deficiency or MGD can be identified or ruled out, that can help determine (or eliminate) which of the many treatments still available would be appropriate for you.

[DibbieNZ]

Hi all, sorry I didn't see these replies til now.

Update: I've done a CDSA 3 (poo sample) and results came back confirming 0 lactobacillus good bacteria and other good bacteria lower than it should be too. I've been on high dose probiotics for three weeks and they have now added lactoferrin with SB bacteria and I'm taking an antiparasitic to try and kill off dientamoeba fragilis. I can't say I've noticed an improvement in my eyes yet but I will see Sydney Eye Hospital again next week. The naturopath says I will need to take the probiotics for at least 3 months. My problem is an aqueous deficiency I believe. My meibomian glands weren't an issue on my last few checkups but I do use a warm compress twice daily and clean the lid margins with a weak bicarbonate solution. I found a website that suggested that lactoferrin given orally was helpful in increasing tear production in Sjogrens patients, and I also found something that said lactoferrin is produced in the body as a by product of gut bacteria doing their thing. The naturopath is confident she can fix my gut but no one is sure what will happen with my eyes. And of course there are still a number of specialists insisting it is Sjogrens. I'm going to ask Sydney Eye Hospital if serum eye drops would help until my gut is healed better but the wait time to produce these is 6-8 weeks. Has anyone got any thoughts on this?

[MGD1701]

Hi DibbieNZ,
thanks for sharing. Some dr say probiotics helps. I hope it will give you relief.

Sjogrens: I just watched a viedo that the 'sjo' test for Sjogren in USA. Seems it is pretty accurate.The panel also discussed treatments (serum drops is one of them). Here is the link/detail, if you miss my earlier posting.

Panel Discussion - May. 2016 ophthalmology management
Moderator: Kendall Donaldson, MD, MS
Panelists: Marguerite McDonald, MD; Cynthia Matossian, MD; Alice Epitropoulos, MD
http://www.ophthalmologymanagement.c...sease-in-women

MGD: if your dr press/check your glands (with finger, q-tip etc) and see clear oil secrets, then you dont have MGD. The problem is many/most doctors still do NOT do it - that is why many of us suffer!!

Please keep us updated.

[DibbieNZ]

Ok, an update....

went back to Sydney Eye Hospital yesterday and my eyes were sore when I saw the doctor as it was 2.5 hours since I'd put eye drops in but you have to hold off while you're waiting to be seen.

I showed him my CDSA results and told him about the probiotics and the darn parasite. He found my TBUT was just under 4 seconds..... but here's the interesting part. He did the Schirmer test again, and I wasn't really expecting a change from last time but as soon as he put the strips in I could tell it felt different. He came back after about two minutes and plucked the strips out and my left eye was already over 10 and the right eye wasn't as good but he said was still definitely over 10 if he had left me for the full five mins. So neither of us expected that. I asked him why in that case do I not have tears rolling down my cheeks given that I have punctal plugs in both lower tear ducts. He didn't know but suggested they could be flowing into the top still.

So although he didn't say anything about MGD and he said they looked fine he has given me prednisolone eye drops for a month to reduce any inflammation with chlorsig ointment at night for two weeks to eliminate other possible thing like demodex mites and I have to use the Bruder heated compress 3-4 times per day. He gave me a month off work as he said I shouldn't be in air con or looking at a computer for more than 3 hours per day total, no more than an hour at a time and told me I should go out for a walk each day and enjoy nature. I have heard other people suggest nature is good for picking up soil bacterias which are actually helpful for your bacterial diversity so I'm very happy with that piece of advice. I've been instructed to eat more omega 3 and 6 but I wonder if I'm not absorbing it properly due to my parasite who allegedly likes to create a biofilm in the gut where he hides from the immune system and blocks nutrients, and also possibly eats my good gut bacteria. I'm taking paracea forte and lactoferrin with saccharomyces boulardii and being as good as I can to stick to the diet I've been given which is gluten free, sugar free, dairy free but with quite a few exceptions, caffeine free, alcohol free, preservative free but I've been told it will be a minimum of six weeks, possibly twelve to sort the parasite and even then it may fail and I'll have to try something else. But my dietician does have a plan B although I don't know what that is yet.

I go back again in 4 weeks so I'll post again after that but I'd love to hear from anyone who's been through something like this and has any advice. I'm also doing autogenics meditation and will only do gentle exercise while I'm trying to kill the parasite. Apparently stress including over exercising just encourages him.

Lots of love to all of you out there because dry eye sucks!

Debbie

[DibbieNZ]

Hi all, another update....

im still taking probiotics and the paracea forte but I've gained some weight and hoping this means the parasite is gone. I will test again soon!

the punctal plugs in both eyes are gone. Left one started to fall out and was removed a while ago, and this week the right one started to come out so was removed. We didn't do the Schirmer test this time but I've had such good results previously the doctor was confident in removing the plug. He says he expects me to make a full recovery in time. And I'm off the prednisolone. I only use systane ultra lubricating drops plus my bruder heated mask. The rest of it is nutrition.

My liver results are woeful and the doctor thinks this is because of the supplements I've been taking and will come right when I stop. I've just started to eat raw food again as I was craving it but I soak it in vinegar and water carefully. Certainly don't want another parasite!!

so there is still an issue with Meibomian glands but there's no inflammation and full recovery is expected. Without knowing my liver results the eye doctor, who is amazing, suggested curcumin and dandelion tea and things that detox the liver. Now I know that sounds like an odd thing for an eye doctor to say but this man is no ordinary doctor. He is so highly qualified but at the same time so holistic in his approach. Without him there is no doubt that I'd be suffering away somewhere on cyclosporine.

i thank God every day for directing me to this doctor. At the end of the day everything is up to God, and for me that's been a confronting realisation. I wish everyone out there suffering with dry eye the very best in your search for relief. I know it's possible and I think that in time doctors will understand much more about it.

i hope that anything I've posted here is helpful for someone and I'm so happy to give more information if you have questions. I don't see notifications for this forum even though they're turned on so if I don't reply quickly enough try me at green.eyed.monsta@hotmail.com to let me know and I'll post answers here so everyone can see xx

[MGD1701]

Hi Dibbie
Firstly, congratulations. Thank you so much for sharing again.
If you have MGD, normally lid hygiene and Omega 3, 6/GLA are helpful/important, based on personal experience too.

Raw food: I also read somewhere that it is important we eat some raw food (best in different colors), such as salad, only fruit is not enough.

Thanks again!

[DibbieNZ]

Good morning MGD1701! Well it is in Australia anyway, lol. It may be nighttime for you?

im not allowed much fruit yet as we haven't confirmed the parasite is gone but I've been making a coconut water smoothie with (all organic) blueberries, Granny Smith apple, celery, ginger, lemon juice and spinach. I also sneak in some grated raw beetroot and carrot with some lettuce leaves during the day. And that's my raw food so far. But I'm very excited to do my next poo test and if the parasite is gone then things are looking up!!

i have a wish list of things to eat when I'm allowed and one is banana. Oh how the mighty have fallen that my wish list includes a banana, lol.

I am eating at lot of omega 3 from a variety of sources- fish oil, salmon, flaxmeal, chia plus lacritec capsules.

I should mention im still signed off work as I can't be in air con or look at screens etc so things are not perfect but the fact that tears come out now when I cry - amazing! And there are still so many doctors I've seen who have such negative opinions and say no one ever gets better. You CAN get better from this. You just need the right doctor with the right advice. It doesn't matter how many are wrong as long as you listen to the one who is right.

I will post again with further updates in a month or so I guess because having been through this I really want to help everyone I can. Love to all out there xx

[scanner78]

Hi DibbieNZ, just checking in to see if you noticed any improvements now that it's been a month? Thanks!!

[DibbieNZ]

Hi Scanner78,
well unfortunately my last poo test showed I still have the parasite dientamoeba fragilis. However I no longer have punctal plugs (although the left tear duct looks like it is scarred shut. The doctor tried to syringe it open on Nov 3 and I could taste the solution he flushed it with but it seems to have closed again. I go back tomorrow morning for my next checkup).

in order to see if my gut bacteria can survive on their own I’m now 4 days into a two week stretch of no supplements except fish oil and lacritec and then I do another poo test, this time a CDSA 3 which will show bacteria.

The eye doctor wanted me to try cutting back the lubricant drops to four times per day and a couple of times I’ve managed this but usually it’s five. However this is much better than before!! He said previously that he expects I will make a full recovery and look back on this as a glitch.

In the meantime I’m also doing a hair mineral test to see if any heavy metals may be in my body. I read that when your gut is dysbiotic that heavy metals or even essential minerals can get out of balance so I’m just checking this out and should get results in 2-3 weeks.

I still use my bruder mask 3 times per day and can’t work due to air con and computer screens but I do believe that I am going to get better. I got married last week and this week I am writing my thank you cards and doing much better than when I tried to write the invitations.

I really do thank God for helping me get through this. Earlier this year I thought I would be dead by now. Gut bacteria can really make you sick. There is no doubt in my mind that God was answering a very desperate prayer when he directed me to Dr Ball. I truly hope that what I’ve tried and found helpful will help others.

Love to everyone one out there and hopefully I’ll get more good news soon xx

[MGD1701]

Hi Dibbie
Congratulations for the success and sharing your great news (marriage).

[DibbieNZ]

Well hello everyone!!!!! I’ve just seen the doctor and I have EXCEPTIONAL news. He says that I’m ready to trial working on a computer at home in air con four hours per day for two weeks. He will then reassess me and I may be returning to work part time or possibly full time. He has asked me to let him know my heavy metal test results when I get them. And of course I’ll share them here too.

So just to recap, here is a list of the supplements I’ve taken so far in case it helps anyone else:

bioceuticals ultrabiotic 500 - 1/2 sachet morning and night
bioceuticals IM repair - 1 teaspoon morning and night
bioceuticals gastrocare excel because it has lactoferrin in it -1 teaspoon morning and night. Lactoferrin is supposed to help with the parasite but I also read that it can increase acqueous tear production. It is also supposed to help you absorb iron but I have become iron deficient hence why I’m testing heavy metals.
bioceuticals saccromyces boulardii - 2 tablets morning and night ( a yeast to eat away the parasites biofilm)
blackmores fish oil 1000mg - 1 capsule morning and night
bioceuticals curcumin triple - 1 capsule morning and night

bioceuticals paracea forte - 3 tablets at lunch supposed to kill off the parasite but doesn’t seem to have worked according to my last stool test
lacritec - 2 capsules per day an omega supplement
bioceuticals iron sustain -1 tablet at lunch, also has vit c and some bvitamins

and my diet during this time has been gluten free, sugar free, dairy free but 1 cup goat and sheep milk is ok or a2 milk ok. Hard cheeses ok. No preservatives, no alcohol and no caffeine preferred but I was allowed one weak coffee per day.

Added by me - sauerkraut with my lunch, chia seeds, ground flaxmeal, probiotic yoghurt, bone broth, fermented milk thistle, dandelion tea and peppermint tea.

And a whole lot of praying. And now, a whole lot of thanking God.

Love to you all xx.

[DibbieNZ]

Here we go - an update

My hair mineral test showed no heavy metals (yay) but copper and zinc were high, iron was low and sodium and potassium were low. Wondering if these being low is causing a malabsorption of nutrients?

Anyway, that darn parasite dientamoeba fragilis is still thee so we’re trying some new products. My next checkup with the eye doctor is in May 2018 so I’m being conservative with eye drops and using them four times per day with my bruder heat mask three times per day.

My gut bacteria has reinoculated on the probiotic but as I still have the parasite we are continuing, but I can now start to add in more organic fruit and fresh veges.

Diet is still gluten free sugar free milk free (I do have some goat and sheep yoghurt) no alcohol no caffeine no preservatives. And although I do have some fruit now it is in moderation and not really sweet fruits - I have green apples, berries, and just recently apricots.

I eat eat more pills than I can bear but hopefully not for much longer as two naturopaths think it is reasonable that I may be parasite free by end of January.

So, here’s my daily list of supplements:

Mediherb digestive bitters, 40 drops ten mins before meals three times per day

Early morning
1t BioCeuticals IM REPAIR
1t BioCeuticals gastrocare excel
1 capsule 1000mg fish oil
1 capsule BioCeuticals thercumin triple
2 capsules BioCeuticals SIBO GUARD
1capsule multivitamin for women with adaptogenic herbs
1 capsule BioCeuticals paracea forte
1 capsule vision care (black currant, lutein etc)

Mid morning
1 capsule BioCeuticals biofilm clear
1iron tablet

lunch

1/2 sachet BioCeuticals ultrabiotic 500
2 capsules BioCeuticals SB floarctiv
2 capsules lacritec
1 capsule vitamin c with carotenoids
1 capsule FEMEX (yummy bacteria for your vagina lol - skip this if you are a man)

afternoon

1capsule BioCeuticals biofilm clear

dinner
repeat Early morning without the multivitamin

supper
repeat lunch

I do believe things will continue to improve, and hoping that getting rid of the parasite will be a real turning point. I hope that some of this information is helpful to someone else out there. Love to all xx, Debbie