Rumigirl
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posted
For those of you who have Sjogren’s, or who know about it, what has helped the most for severe dry eye symptoms?
I use frequent eye drops during the day and viscous drops at night. But the drops don’t last long, and my vision is really impaired by the dry eyes. I have not been willing to use Restasis yet, as I still have on-going Tick-Borne Disease, and I don’t want to use any steroids.
I already have a tremendous amount of lesions on my retina from the Lyme, which the ophthalmologist thinks is old damage that isn’t affecting my vision. I beg to differ on the effects of the lesions! Although, who know whether it is the lesions, on-going inflammation, dryness, etc.?
I don’t know whether I should consider punctal plugs, but I am inclined not to do that yet. I see the ophthalmologist tomorrow and am putting together my questions.
On top of all that, I have cataracts, which are badly affecting my vision. I am holding off on the surgery for those now, as I am going to try eye drops that can reverse cataracts, although, in my case, likely only somewhat at best. Last year, they were at a 2 out of 4.
I am dealing with breast cancer and Complex Regional Pain Syndrome now, in addition to CRPS, so am leery of any surgery, as it can make the CRPS pain spread to a new area, as it has already! (Yes, people have that in the eyes, too)!
Has anyone here had cataract surgery?
Thank you. Lord have mercy!! It’s all more than any one person can deal with.
Posts: 3771 | From around | Registered: Mar 2008
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posted
I love my punctal plugs! It's very simple and takes seconds to do!
I now have the permanent kind because the temporaries kept falling out. The permanent ones are shorter and fit in the tear duct better.
I don't even use drops because ALL of them irritate my eyes. I would say it's due to my salicylate sensitivity.
I also have cataracts and the doctor said I could probably qualify for surgery, but really, I can see quite well. So .. I'm waiting. (Mine got considerably worse in one year's time .. I have no idea why, but it was around the same time everything else went south.)
Get the plugs!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rumigirl
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posted
Thank you, Lymetoo! So are there no down-sides to the punctal plugs?
Unfortunately, I REALLY can't see well at all, even with glasses. I think that the cataracts are probably mainly to blame, although the dryness adds to it. In retrospect, my last catastrophic fall was likely in good part due to not being able to see well, as I thought I was at the end of the stairs, but wasn't.
I don't know if I should get the cataract surgery soon, but was going to try the eye drops that are supposed to reverse cataracts---or at least stop them from getting worse first.
I am so fed up with trying to deal with so many really hard conditions at once! I'm at the end of my rope!
I will ask her tomorrow about the plugs. Thank you so much!
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Rumigirl
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posted
Another question: Do the plugs just go in the opening of the lacrimal gland? In other words, is there no puncture of the body? Because any puncture can spread the horrific CRPS pain.
Does it mean that your eyes can't cry? Not that I can cry an more. I feel like all crying has been beaten out of me, sad to say.
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posted
Rumigirl, have you read through the notes we posted from Ty Bollinger's two series about how to heal cancer with natural treatments?
If you need me to, I can find the threads - one about Quest for the Cures and the other A Global Quest - they have life-saving info re cancer/breast cancer.
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posted
Rumingirl, on the contrary, I had the punctal plugs for my severe dry eyes and they did nothing for me. I had them for several months and ended up getting them taken out because they bothered me. I could feel them in the corners of my eyes. They were pretty useless for me.
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Rumigirl
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posted
Thank you, everyone---more later, going to my appointment.
Posts: 3771 | From around | Registered: Mar 2008
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posted
I'm sorry, Rumi!! I missed your other questions.
They just go in the lacrimal gland... no puncture at all. Very simple and I have MORE tears, not less.
(The downside would be that if you have NO TEARS now, then it may not help.)
Keep us posted on what happened at the Dr's office!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rumigirl
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Member # 15091
posted
The opthalmologist said that the punctal plugs probably wouldn't help me that much. The bulk of the visual problems are from the cataracts. In one eye they are somewhat worse than they were last July, when they were a 2 out of 4.
Unfortunately, my vision is quite bad now, and has been for years. I thought that my rx would have changed, and it didn't. That was true last time I was there, too. She said that glasses wouldn't help much.
I ordered, and just got, 2 kinds of eye drops that are supposed to prevent cataracts from getting worse, and can reverse them. But at this stage, I would be very lucky for them to help much, I'm afraid. I'm going to try them for a number of months and see what happens.
If they don't help enough, I'll have to get the cataract surgery before long. As I said, I think a catastrophic fall I had was in large part due to my impaired vision---this was piecing it together after the fact.
She did suggest, again, Restasis, which I have avoided, since I still have active TBD's, and have a LOT of damage to my retina from Lyme. It's fillled with lesions! My top retinal specialist, plus a top teacher from London had never seen anything like it! What the heck, I'm tired of excelling in such things.
I did speak wiith her some about the cataract surgery, including the fact that I'd need an anesthesiologist to prevent the CRPS spreading to the eyes (!!). Usually, they just use eye drops! Numbing, obviously.
The other thing though is, due to Lyme and the dryness, my vision changes from moment to moment. But at this point, it's just plain bad all of the time!
I'm so fed up with having to deal with so many impossible conditions with NO energy with which to fight everything.
Thank you, all.
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote:Originally posted by Robin123: Rumigirl, have you read through the notes we posted from Ty Bollinger's two series about how to heal cancer with natural treatments?
If you need me to, I can find the threads - one about Quest for the Cures and the other A Global Quest - they have life-saving info re cancer/breast cancer.
Yes, Robin, I've seen the series, thanks to you. I spent many decades teaching clients how to get rid of cancer naturally, having studied with Dr. Kelley for years, plus all of the rest of the natural health care I did for decades.. So I'm doing that, and have reduced it by almost ⅔ in 4 ½ months. But I may look into a laser lumpectomy, as my strength to do it all is extremely limited.
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Rumigirl
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posted
quote:Originally posted by lookup: VisionPro EPA/DHA/GLA*
*Supports natural tear production and tear film integrity in normally functioning eyes Non GMO
I do use a lot of very good quality fish oil. I haven't been having GLA lately. I don't notice any effect on my eyes, though.
I've clearly had Sjogren's for many decades, so the damage was done a long time ago, unfortunately. I was diagnosed with it in '89, although I didn't believe it then. Had symptoms long before that.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Rumi .. I'm sorry to hear that you couldn't do the plugs. Like I said, if you have few tears left, it won't work. Your doctor should know, one way or the other.
I can feel your exhaustion over here!
Take care .. Love and hugs to you!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Pocono Lyme
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posted
I also wasn't a candidate for punctual plugs. Restasis did nothing for me when I tried it years ago. I started a new drop on the market in September (Xiidra) which helps a lot. Thanks be to God! No more of the eyes feeling like they've been cut up with a razor blade. They gave me a card to get the first month free. Within 3 weeks I had excessive tearing.
The eye doctor said my left eye should be overflowing with tears as the duct is already closed. He asked if I had eye surgery as it looks like scar tissue. I hadn't had surgery.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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Yes, I've heard of the new drug! I'm so happy it worked for you!
It's nice to have another drug on the horizon for me if I need it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rumigirl
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posted
quote:Originally posted by Lymetoo: Rumi .. I'm sorry to hear that you couldn't do the plugs. Like I said, if you have few tears left, it won't work. Your doctor should know, one way or the other.
I can feel your exhaustion over here!
Take care .. Love and hugs to you!!
Thank you, Lymetoo! Yes, I'm exhausted beyond words. I am trying to fight too many intractable conditions at once with NO energy with which to do so. I so want to give up at this point, but that would leave me with a very long, painful, horrible decline and death. (This should really be a separate thread)!
In terms of the dryness & plugs, she said that my dryness was moderate, which was a surprise, given my symptoms over so many years. So I don't know why the plugs wouldn't help. But mainly she was saying that my vision problems were primarily from the cataracts.
I think that I need to revisit the plugs later, after using the eye drops and seeing if they help enough to put off the cataract surgery. I just got them yesterday, and one of them stings like crazy & makes my eyes run as a result! So we'll see if I can even use them much. I did get another kind, which isn't likely to cause that, although it's less likely to help as much. Sigh!
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Rumigirl
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quote:Originally posted by Pocono Lyme: I also wasn't a candidate for punctual plugs. Restasis did nothing for me when I tried it years ago. I started a new drop on the market in September (Xiidra) which helps a lot. Thanks be to God! No more of the eyes feeling like they've been cut up with a razor blade. They gave me a card to get the first month free. Within 3 weeks I had excessive tearing.
The eye doctor said my left eye should be overflowing with tears as the duct is already closed. He asked if I had eye surgery as it looks like scar tissue. I hadn't had surgery.
Hmm, I never heard of it! I will look into it.
In my case, the Sjogren's dryness is severe in many areas at once: eyes, mouth, nose, vaginal area, and possibly my lungs. I have lost so many teeth due to it, and will probably lose more. I can barely eat, due to having lost so many, and having not much saliva. My dry mouth has been non-stop torture, in spite of Xylimelts that I use and constant drinking fluids.
I was rx'd a med for it a while ago, which I only used a short time, as it made my saliva run so much at night that it made a big mess on my pillow, in spite of using paper towels. Likely I should go back to it. But I am on so darned many meds and supplements, and need to go back on abx for TBD's, so that adds way more. There is only so much my poor little body can handle!
My life has really been non-stop torture for way too long now. As I said, this part should really be another thread, I just have limited energy to even do that.
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Maybe if they are moderate, then the plugs would help.
I'm so sorry you are so miserable. I can only imagine how awful it must be for you.
Hugs and love, Rumi!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rumigirl
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posted
Thank you, Lymetoo. Yes, it is more than I have strength to fight or to bear.
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bluelyme
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posted
Trying bee venom eyedrops and tobramycin before its helping with mangosteen ...idk if that helps but dancing bee acres/adc has them
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Rumigirl
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posted
quote:Originally posted by bluelyme: Trying bee venom eyedrops and tobramycin before its helping with mangosteen ...idk if that helps but dancing bee acres/adc has them
Bee venom eye drops?? Wow, that sounds scary. Maybe they aren't?
What are your eye symptoms?
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sammy
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posted
Sorry I didn't see or get to reply to your post earlier Rumi.
My mom was actually diagnosed with aggressive/ quickly progressing cataracts this past November of 2016.
Within the month her vision was so poor that she literally could not see even with the additional assistive lenses from the eye doctor.
Thankfully, her first procedure for cataract removal was moved up to early December. Then she had the second just before Christmas. It was truly a blessing as we got to enjoy the holiday with my niece & nephew.
My mom has had to use Restasis for several years now, basically since it was FDA approved. She also uses the Systane brand eye products in morning & night.
She has untreated Lyme & Babesia.
And I believe you know that she has Neuroendocrine Pancreatic Cancer. It's spread to her liver now...
Hugs friend, I think of you often!
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