I'm Attempting Reversal Of Advanced PSC Cataracts, Feedback Appreciated

[daphne134]

Reversal of diabetic cataract by sorbinil, an aldose reductase inhibitor

maybe a Multi with high amounts of Bs, like Thorne Research 2/day, and a ketogenic diet? Bloodsugar is one measurement, but what about tissue concentrations and sensitivity. Either way, i do not know enough.

Huh. So looks like I can get a home A1C test kit from CVS that measures more than just blood glucose at a given time. (Rant alert: Now I'm shock the optometrist and ophthalmologist didn't suggest this. There's multitudes of information online that thin people can be diabetic, and the only condition widely associated with cataracts is diabetes.)

But after all these years in Peat groups I can't fathom how people even survive on keto. I guess it's possible because I have a friend who was long-term posting her daily steaks on social media. Ok will look into it further, thanks.

 

[Tristan Loscha]

An exploratory LC‐MS‐based metabolomics study reveals differences in aqueous humor composition between diabetic and non‐diabetic patients with cataract - PubAg


An exploratory LC‐MS‐based metabolomics study reveals differences in aqueous humor composition between diabetic and non‐diabetic patients with cataract

Author:
Pietrowska, Karolina, Dmuchowska, Diana Anna, Krasnicki, Pawel, Bujalska, Aleksandra, Samczuk, Paulina, Parfieniuk, Ewa, Kowalczyk, Tomasz, Wojnar, Malgorzata, Mariak, Zofia, Kretowski, Adam, Ciborowski, Michal
Source:
Electrophoresis 2018 v.39 no.9-10 pp. 1233-1240
ISSN:
0173-0835
Subject:
amino acid metabolism, antioxidants, blindness, cataract, disease occurrence, electrophoresis, epidemiological studies, eyes, glycosylation, metabolomics, metformin, nicotinamide, nutrients, oxidative stress, patients, people, surgery, taurine, uric acid, xanthine
Abstract:
Cataract is the leading cause of blindness worldwide. Epidemiological studies revealed up to a fivefold increased prevalence of cataracts in diabetic subjects. Metabolomics is nowadays frequently implemented to understand pathophysiological processes responsible for disease occurrence and progression. It has also been used recently to study the metabolic composition of aqueous humor (AH). AH is a transparent fluid which fills the anterior and posterior chambers of the eye. It supplies nutrients and removes metabolic waste from avascular tissues in the eye. The aim of this study was to use metabolomics to compare the AH of diabetic and non‐diabetic patients undergoing cataract surgery. Several antioxidants (methyltetrahydrofolic acid, taurine, niacinamide, xanthine, and uric acid) were found decreased (−22 to −61%, p‐value 0.05–0.003) in AH of diabetics. Also amino acids (AA) and derivatives were found decreased (−21 to −36%, p‐value 0.05–0.01) while glycosylated AA increased (+75–98%, p‐value 0.03–0.009) in this group of patients. Metformin was detected in AH of people taking this drug. To our knowledge, this is the first metabolomics study aiming to assess differences in AH composition between diabetic and non‐diabetic patients with cataract. An increased oxidative stress and perturbations in amino acid metabolism in AH may be responsible for earlier cataract onset in diabetic patients.

@daphne134

..'Several antioxidants (methyltetrahydrofolic acid, taurine, niacinamide, xanthine, and uric acid) were found decreased (−22 to −61%, p‐value 0.05–0.003)'

 

[daphne134]

@daphne134

Yeah, I seriously can't thank you enough for this direction because I realized what I personally need is FODMAP. I've known about it vaguely since forever but for better and (mostly) worse I always need to understand how things work before I'll do something, plus my education was lacking in the area of health (surprise surprise). Ok I have a new diet to plan - happy to say more later.

 

[Tristan Loscha]

Yeah, I seriously can't thank you enough for this direction because I realized what I personally need is FODMAP. I've known about it vaguely since forever but for better and (mostly) worse I always need to understand how things work before I'll do something, plus my education was lacking in the area of health (surprise surprise). Ok I have a new diet to plan - happy to say more later.

..the conversion happens endogenously from glucose, FODMAP elimination will probably not bring resolve. It is the amount of tissue carbs and overloading that is an issue.

 

[daphne134]

..the conversion happens endogenously from glucose, FODMAP elimination will probably not bring resolve. It is the amount of tissue carbs and overloading that is an issue.

Ran some numbers and to be more clear (until I find a doctor) I'm currently combining keto with FODMAP. That is - limiting both amount and type of carb. Looking back, during the timespan between when my left eye could read and when it couldn't - I had gotten to a place of eating (actually, drinking) quite a lot of fructose and sorbitol and there was FOS in some medication I was taking. (And wasn't doing much dairy as I recall.)

All the literature on fructose intolerance is laden with hand wringing and over-generalizations - but here's something interesting:

Heterogeneity in Metabolic Responses to Dietary Fructose

And while this isn't much to go on - this fellow in Spain is diagnosed with fructose malabsorption, and he seems not to just be talking about digestive issues:
The opposite of healthy? Low fructose diet : Cooking

I believe Lanomax is the only thing that might actually reverse existing damage. They've been very communicative (as much as they can be) and also have doubled the size of the $99 bottle btw. But the right conditions have to be in place of course.

(Editing to add: I got the FODMAP idea from Chris Masterjohn's recent newsletter where he advises diabetics to look at the sweets portion of FODMAP.)

 

[skkya]

How are you doing, Daphne? Has anything helped? I just read through the thread and am hoping you have had some improvement.

 

[Katty]

@daphne134 Thanks for sharing all this. Do you have any recent updates? Did you continue using the Lanomax eye drops and did they help?

 

[daphne134]

I stopped the Lanomax out of concern for what it may do to corneas. I'm using Manuka Honey drops, salt / sodium bicarb eye wash, Idealabs lanosterol topically in eye, and working on getting tested for Lupus, which has ocular manifestations.
MB, pyrucet, monolaurin, b vitamins, A, D, K.
Basically I'm not doing much better but am holding steady while still figuring it out.
Btw there's a computer program called Iris that's great for visibility on the computer.

 

[ecstatichamster]

Thank you for the follow up @daphne134

 

[daphne134]

Thank you for the follow up @daphne134i

I did forget to mention, my left eye is slightly better than it was. I'm in a dour mood today (having.what l believe to be a flare up).

 

[Katty]

I stopped the Lanomax out of concern for what it may do to corneas. I'm using Manuka Honey drops, salt / sodium bicarb eye wash, Idealabs lanosterol topically in eye, and working on getting tested for Lupus, which has ocular manifestations.
MB, pyrucet, monolaurin, b vitamins, A, D, K.
Basically I'm not doing much better but am holding steady while still figuring it out.
Btw there's a computer program called Iris that's great for visibility on the computer.

@daphne134 Thanks very much for your update! How are you putting lanosterol in the eye? Just dropping it in like a normal eye drop? Also, why is lanomax bad for the cornea?

 

[daphne134]

This is an update on my situation, which turned out exceedingly well after a major struggle. Here's what I learned.

1. There are different types of cataracts. PSC cataracts are the aggressive, blinding, fast-moving type. Know that if you get this diagnosis you can go blind really fast. I was in a horrifying situation for awhile. While spending over a year trying to cure them I suddenly lost vision to the point where I couldn't read any single thing on my Android phone (which has great accessibility controls) or Windows computer. No matter how big or bright or whatever, in the end, everything blurred together and I couldn't see a text or a phone number under recent calls. I had a technique of photographing labels and blowing them up to see dosages on supplement labels, couldn't see anything. Couldn't make my way from the Lyft to the curb and back. I was functionally blind for several weeks before surgery.

2. This was especially distressing because I'd also spent that year on cataract patient forums figuring out what outcome I would want from surgery. It's hard enough to shop around for a surgeon. They don't do phone interviews and their staff doesn't answer questions like "Will he be willing to prioritize near vision and let me use eyeglasses to drive, as I did before, since I've been myopic since age 12?" And insurance won't pay for you to check out a bunch of doctors. There's a bias toward presbyopia with the assumption that cataracts are an old persons disease (though patients are getting younger, of course) and old people play golf. To be clear, old people should be able to read if they prefer, but if you still have to work it can be especially distressing not to be in control of your desired outcome. I got incredibly lucky and ended up with a surgeon who gave me what I wanted. I can read without glasses, and I think the materials and technique he used were the best available. He was at a practice that has glaucoma in the name. Check your local glaucoma practice if you are ever in this situation, turns out they do more than just glaucoma. (I know of at least one other cataract patient in a different area who also went to a glaucoma center.) The university-affiliated ophthalmologists had long waiting lists and there were all kinds of road blocks I encountered. If you're ever going blind, and you'll know unless you're self destructive (like I was), find yourself a trusted ophthalmologist asap is my advice. And I thank my lucky stars every day I had health insurance.

3. Re: the self destructive bit. While blind I listened to hours upon hours of Sam Vaknin and learned a lot about the cluster-b personality disorders.

4. Since cataract isn't just one disease, contrary to what Dr. Google says about it, your mileage will vary. Various drops and other solutions may or may not work. I have a friend, a few years older than me, who fits the typical pattern described online - she's been told for years that cataracts are forming but she still reads and drives. She subscribes to msm medicine and food isn't a priority in her life. We are all unique.

5. For people who might say, if you trusted the surgeon why don't you trust all of medicine. Well he was the third out of three I saw over more than a year. (I probably couldn't have gotten three in one year covered. He qualified as a second opinion because I waited a year between getting diagnosed and finding my surgeon.) And a few lucky breaks landed me in his office. I have direct evidence the prior one was not going to give me this outcome based on how my measurements were calibrated.

6. I figured out the root cause is mitochondrial disease. Yes I've been through a lot of possibilities but this one fits for sure, lifelong symptoms, and explains why methylene blue and b vitamins are so essential to my well being.

I wanted to say more about the last bit (mitochondria are fascinating) but I also wanted to get this out finally!

 

[Birdie]

This is an update on my situation, which turned out exceedingly well after a major struggle. Here's what I learned.

1. There are different types of cataracts. PSC cataracts are the aggressive, blinding, fast-moving type. Know that if you get this diagnosis you can go blind really fast. I was in a horrifying situation for awhile. While spending over a year trying to cure them I suddenly lost vision to the point where I couldn't read any single thing on my Android phone (which has great accessibility controls) or Windows computer. No matter how big or bright or whatever, in the end, everything blurred together and I couldn't see a text or a phone number under recent calls. I had a technique of photographing labels and blowing them up to see dosages on supplement labels, couldn't see anything. Couldn't make my way from the Lyft to the curb and back. I was functionally blind for several weeks before surgery.

2. This was especially distressing because I'd also spent that year on cataract patient forums figuring out what outcome I would want from surgery. It's hard enough to shop around for a surgeon. They don't do phone interviews and their staff doesn't answer questions like "Will he be willing to prioritize near vision and let me use eyeglasses to drive, as I did before, since I've been myopic since age 12?" And insurance won't pay for you to check out a bunch of doctors. There's a bias toward presbyopia with the assumption that cataracts are an old persons disease (though patients are getting younger, of course) and old people play golf. To be clear, old people should be able to read if they prefer, but if you still have to work it can be especially distressing not to be in control of your desired outcome. I got incredibly lucky and ended up with a surgeon who gave me what I wanted. I can read without glasses, and I think the materials and technique he used were the best available. He was at a practice that has glaucoma in the name. Check your local glaucoma practice if you are ever in this situation, turns out they do more than just glaucoma. (I know of at least one other cataract patient in a different area who also went to a glaucoma center.) The university-affiliated ophthalmologists had long waiting lists and there were all kinds of road blocks I encountered. If you're ever going blind, and you'll know unless you're self destructive (like I was), find yourself a trusted ophthalmologist asap is my advice. And I thank my lucky stars every day I had health insurance.

3. Re: the self destructive bit. While blind I listened to hours upon hours of Sam Vaknin and learned a lot about the cluster-b personality disorders.

4. Since cataract isn't just one disease, contrary to what Dr. Google says about it, your mileage will vary. Various drops and other solutions may or may not work. I have a friend, a few years older than me, who fits the typical pattern described online - she's been told for years that cataracts are forming but she still reads and drives. She subscribes to msm medicine and food isn't a priority in her life. We are all unique.

5. For people who might say, if you trusted the surgeon why don't you trust all of medicine. Well he was the third out of three I saw over more than a year. (I probably couldn't have gotten three in one year covered. He qualified as a second opinion because I waited a year between getting diagnosed and finding my surgeon.) And a few lucky breaks landed me in his office. I have direct evidence the prior one was not going to give me this outcome based on how my measurements were calibrated.

6. I figured out the root cause is mitochondrial disease. Yes I've been through a lot of possibilities but this one fits for sure, lifelong symptoms, and explains why methylene blue and b vitamins are so essential to my well being.

I wanted to say more about the last bit (mitochondria are fascinating) but I also wanted to get this out finally!

Thank you. I was diagnosed but got help here on the forum from Kiran and used some drops of Can-C which worked. But that was years ago and I'll need the surgery someday. My husband thinks now... Your report has helped a lot with knowing to look for a glaucoma center. So glad you found a good doctor. That you were blind for a while and still persevered. Wow. Well you had to but I wonder if I would have!! Thanks again.

 

[RealNeat]

Dr. Jennifer Daniels in multiple interviews with Patrick Timpone, advocates using Vicks VapoRub in the eyes for cataracts. Just the tiniest little bit in each eye, after you already laying down in bed at night. Looks like the 1RN site is down right now, so I can't get a link.

This is interesting, sounds like a bad idea because of all the strong cooling herbs in it not to mention the petroleum. I'm guessing the therapeutic agent is turpentine, well known for its dissolving ability. Making your own turpentine and olive oil dilution, or even castor may be more beneficial. The safety of turpentine in the eye? I'm not sure, but in theory it sounds intriguing.

 

[RealNeat]

This is an update on my situation, which turned out exceedingly well after a major struggle. Here's what I learned.

1. There are different types of cataracts. PSC cataracts are the aggressive, blinding, fast-moving type. Know that if you get this diagnosis you can go blind really fast. I was in a horrifying situation for awhile. While spending over a year trying to cure them I suddenly lost vision to the point where I couldn't read any single thing on my Android phone (which has great accessibility controls) or Windows computer. No matter how big or bright or whatever, in the end, everything blurred together and I couldn't see a text or a phone number under recent calls. I had a technique of photographing labels and blowing them up to see dosages on supplement labels, couldn't see anything. Couldn't make my way from the Lyft to the curb and back. I was functionally blind for several weeks before surgery.

2. This was especially distressing because I'd also spent that year on cataract patient forums figuring out what outcome I would want from surgery. It's hard enough to shop around for a surgeon. They don't do phone interviews and their staff doesn't answer questions like "Will he be willing to prioritize near vision and let me use eyeglasses to drive, as I did before, since I've been myopic since age 12?" And insurance won't pay for you to check out a bunch of doctors. There's a bias toward presbyopia with the assumption that cataracts are an old persons disease (though patients are getting younger, of course) and old people play golf. To be clear, old people should be able to read if they prefer, but if you still have to work it can be especially distressing not to be in control of your desired outcome. I got incredibly lucky and ended up with a surgeon who gave me what I wanted. I can read without glasses, and I think the materials and technique he used were the best available. He was at a practice that has glaucoma in the name. Check your local glaucoma practice if you are ever in this situation, turns out they do more than just glaucoma. (I know of at least one other cataract patient in a different area who also went to a glaucoma center.) The university-affiliated ophthalmologists had long waiting lists and there were all kinds of road blocks I encountered. If you're ever going blind, and you'll know unless you're self destructive (like I was), find yourself a trusted ophthalmologist asap is my advice. And I thank my lucky stars every day I had health insurance.

3. Re: the self destructive bit. While blind I listened to hours upon hours of Sam Vaknin and learned a lot about the cluster-b personality disorders.

4. Since cataract isn't just one disease, contrary to what Dr. Google says about it, your mileage will vary. Various drops and other solutions may or may not work. I have a friend, a few years older than me, who fits the typical pattern described online - she's been told for years that cataracts are forming but she still reads and drives. She subscribes to msm medicine and food isn't a priority in her life. We are all unique.

5. For people who might say, if you trusted the surgeon why don't you trust all of medicine. Well he was the third out of three I saw over more than a year. (I probably couldn't have gotten three in one year covered. He qualified as a second opinion because I waited a year between getting diagnosed and finding my surgeon.) And a few lucky breaks landed me in his office. I have direct evidence the prior one was not going to give me this outcome based on how my measurements were calibrated.

6. I figured out the root cause is mitochondrial disease. Yes I've been through a lot of possibilities but this one fits for sure, lifelong symptoms, and explains why methylene blue and b vitamins are so essential to my well being.

I wanted to say more about the last bit (mitochondria are fascinating) but I also wanted to get this out finally!

Hey hope you are doing well. I have a question for you if you don't mind continuing this thread. Did you wear sunglasses regularly before your cataracts?

 

[ecstatichamster]

Why are you asking about sunglasses? Thanks @RealNeat

 

[Birdie]

Why are you asking about sunglasses? Thanks @RealNeat

The ophthalmologists I've seen stress using sunglasses to prevent cataracts. But, there's been controversy about whether the light on the eyes, in some way, ether direct or indirect and what kind, is helpful in eye health. For a while I wore the orange lenses... very bright imo.

Ray:
The pituitary hormones, especially prolactin and TSH, are pro-inflammatory, and darkness increases TSH along with prolactin, so to compensate for a light deficiency, the pituitary should be well-suppressed by adequate thyroid. Armour thyroid or Thyrolar or Cynoplus, Cytomel, would probably be helpful. (Eye-drops containing T3 might be a way to restore metabolic activity more quickly.)

Limiting water intake (or using salt generously) helps to inhibit prolactin secretion. The saturated fats protect against the body's stored PUFA, and keeping the blood sugar up keeps the stored fats from being mobilized. Aspirin (or indomethacin) is generally protective to the retina, analogously to its protection against sunburn. Adequate vitamin E is extremely important. There are several prescription drugs that protect against serotonin excess, but thyroid and gelatin (or glycine, as in magnesium glycinate) are protective against the serotonin and melatonin toxicities.

Copper and magnesium deficiencies predispose to retinal damage. Red light is protective, blue light (or u.v.) is harmful, so wearing orange lenses would be helpful. Progesterone and pregnenolone, by reducing the stress reactions, should be helpful--in the eye diseases of infancy and old age, as they are in the respiratory distress syndromes.

Aging Eyes, Infant Eyes, and Excitable Tissues — Chadnet

The greatest website on the interwebz!

wiki.chadnet.org

 

[ecstatichamster]

The ophthalmologists I've seen stress using sunglasses to prevent cataracts. But, there's been controversy about whether the light on the eyes, in some way, ether direct or indirect and what kind, is helpful in eye health. For a while I wore the orange lenses... very bright imo.

Ray:
The pituitary hormones, especially prolactin and TSH, are pro-inflammatory, and darkness increases TSH along with prolactin, so to compensate for a light deficiency, the pituitary should be well-suppressed by adequate thyroid. Armour thyroid or Thyrolar or Cynoplus, Cytomel, would probably be helpful. (Eye-drops containing T3 might be a way to restore metabolic activity more quickly.)

Limiting water intake (or using salt generously) helps to inhibit prolactin secretion. The saturated fats protect against the body's stored PUFA, and keeping the blood sugar up keeps the stored fats from being mobilized. Aspirin (or indomethacin) is generally protective to the retina, analogously to its protection against sunburn. Adequate vitamin E is extremely important. There are several prescription drugs that protect against serotonin excess, but thyroid and gelatin (or glycine, as in magnesium glycinate) are protective against the serotonin and melatonin toxicities.

Copper and magnesium deficiencies predispose to retinal damage. Red light is protective, blue light (or u.v.) is harmful, so wearing orange lenses would be helpful. Progesterone and pregnenolone, by reducing the stress reactions, should be helpful--in the eye diseases of infancy and old age, as they are in the respiratory distress syndromes.

Aging Eyes, Infant Eyes, and Excitable Tissues — Chadnet

The greatest website on the interwebz!

wiki.chadnet.org

fantastic, thank you!

 

[Apple]

The ophthalmologists I've seen stress using sunglasses to prevent cataracts. But, there's been controversy about whether the light on the eyes, in some way, ether direct or indirect and what kind, is helpful in eye health. For a while I wore the orange lenses... very bright imo.

Ray:
The pituitary hormones, especially prolactin and TSH, are pro-inflammatory, and darkness increases TSH along with prolactin, so to compensate for a light deficiency, the pituitary should be well-suppressed by adequate thyroid. Armour thyroid or Thyrolar or Cynoplus, Cytomel, would probably be helpful. (Eye-drops containing T3 might be a way to restore metabolic activity more quickly.)

Limiting water intake (or using salt generously) helps to inhibit prolactin secretion. The saturated fats protect against the body's stored PUFA, and keeping the blood sugar up keeps the stored fats from being mobilized. Aspirin (or indomethacin) is generally protective to the retina, analogously to its protection against sunburn. Adequate vitamin E is extremely important. There are several prescription drugs that protect against serotonin excess, but thyroid and gelatin (or glycine, as in magnesium glycinate) are protective against the serotonin and melatonin toxicities.

Copper and magnesium deficiencies predispose to retinal damage. Red light is protective, blue light (or u.v.) is harmful, so wearing orange lenses would be helpful. Progesterone and pregnenolone, by reducing the stress reactions, should be helpful--in the eye diseases of infancy and old age, as they are in the respiratory distress syndromes.

Aging Eyes, Infant Eyes, and Excitable Tissues — Chadnet

The greatest website on the interwebz!

wiki.chadnet.org

Looking at the sun with closed eyes you will see lots of red light, since eyelids don't let any blue light in...