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ocular rosecea

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ocular rosecea

Posted by sam on June 08, 2003 at 09:54:21:

I have been diagnosed with ocular rosecea. I have been using Blephamide drops for three months. I am concerned about the continued use (early on Dr. prescribed twice a day) of these drops and glaucoma. Should I find another Dr., stop drops, or am I worrying about nothing? Any knowledge of this drug? Thanks.



Re: ocular rosecea ??????????

Posted by Walt Stoll on June 09, 2003 at 07:03:52:

In Reply to: ocular rosecea posted by sam on June 08, 2003 at 09:54:21:

Hi, Sam.

I have never heard of this diagnosis. Perhaps you can get something printed from your doc. I certainly can learn something new. However, from what I know of the process this diagnosis is impossible.

In the meantime, if the diagnosis is correct, the same things that would get rid of rosacea will also help here.

Walt



Re: ocular rosecea ??????????

Posted by
Dan O'Brien on June 09, 2003 at 11:28:51:

In Reply to: Re: ocular rosecea ?????????? posted by Walt Stoll on June 09, 2003 at 07:03:52:

Never heard of Ocular Rosacea??? Occular Rosacea is present in at least 40% of people who have Facial Rosacea. The most common symptoms are bloodshot eyes, hyper-sensitivity of the eye surface, excess tearing, and eye pain. Occular Roscea, in severe cases & left untreated, can damage the cornea bad enough to cause blindness. It is most common in Rosacea sufferers who have developed severe, and frequent, facial flushing (i.e - me)

I, personally, do not believe that Rosacea has anything to do with Candida, or Leaky Gut. In my opinion, and in line with current research, Rosacea seems to be a vascular disorder, not a skin, or digestive disorder. Sure, there are those who have fungal infections on their faces, and those who have seborrheic dermatitis (and have been mis-diagnosed as rosacea). I am sure that these treatments will help them. I have not, however, ever heard of a severe Rosacean being "cured". A pre-rosacean, a mild rosacean, or a moderate roscean, maybe. A severe rosacean, I haven't heard of it. Even the top laser doctors, haven't been able to make that claim.

Why does the vascular system break down? Why does it only develop on the face? Is there a genetic link? Why are 70% of the cases in women, but when men do develop it, it is more severe? Why do all sufferers seem to be of Celtic, or Northern European backgrounds? I don't have a clue as to any of these questions. I also, unlike others, do not hold out very much hope for a cure. Although it is absolutely devastating to a sufferer, it is not life-threatening. Hence, who is going to research this disorder?

What rosacea means to me: Everything flushes my face, and therefore affects my eyes. I cannot take a shower warmer than my body temp. I cannot eat spicy food. I cannot, for that matter, even place cooked food in my mouth - I have to wait until it is cold. I cannot go outside when the sun is up - sunscreen or not. I cannot go out in warm, or cold weather. I cannot stress myself in any manner. I cannot apply anything to my face. My newest thing is flushing for no reason every evening. If I break any of these rules, I turn fire-truck red, and the flare-up can last for minutes, hours, or days. I will do anything to avoid a flush (I have comical daily rituals which make me look OCD). The pain of a throbbing face, for days on end, is truly a joy. Am I oddball? I wish I were. There are hundreds like me in my on-line support groups.

I have tried every diet known to man, including the whole foods diet. I have tried the leaky gut, candida, and stress reduction route as well (I gave it a four month run, still doing the SR though). I have read all the posts, and books recommended on this site. I have not, however, found any relief. I have been to the Mayo Clinic, Cleveland Clinic, at least 25 dermatologists, 3 vascular experts, and numerous allergy/environmental experts. Zero relief. Sorry this is such a depressing post, but I'm so damn frustrated with this disorder. I am a 30 year old man who's life is, in all aspects, HELL. My face dictates what I can and cannot do - every single day of my life. I have even removed every mirror, except one, from my house - just too depressing to look into one. Two years ago, I was a completely healthy, athletic, good-looking, and fun-loving person. Today, I am a lonely, disfigured, 30 year old, who lives in constant physical pain. I know the doctors want to help me - A couple have even teared-up during consultations, when I describe what I have to do everyday to function. It's not just a red face!!!!




Re: ocular rosecea ??????????

Posted by an optometrist on June 10, 2003 at 00:20:27:

In Reply to: Re: ocular rosecea ?????????? posted by Dan O'Brien on June 09, 2003 at 11:28:51:

I have seen patients with severe corneal scarring secondary to ocular rosacea. Facial and ocular rosacea are frequently missed by doctors and left untreated. Most people are unaware that W.C. Fields' nose (also, Karl Malden's) is an example of the effects of facial rosacea. I am so sorry to hear what you are going through. It sounds like you have already tried the usual things e.g., oral tetracycine, low carbohydrate diet, etc. Many patients can be managed with these treatments. I hope you will find relief soon. Your sharing with others will surely help many people with milder rosacea seeking the correct diagnosis and treatment.

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Re: ocular rosecea

Posted by LINDA FFE on June 10, 2003 at 07:33:47:

In Reply to: ocular rosecea posted by sam on June 08, 2003 at 09:54:21:


From what Optometrist wrote it souinds to me ro be identical to THYROID EYE DISEASE which I had, except that for the lack of protrusion, caused by swelling of the soft tissues behind the eye?

The first thing to do in the case of inflamation is to take VITAMIN C in sufficient quantities. You might start off with a teaspoonful (around 5-8 grams) every say 15 to 60 mins, until inflamation is controlled, or you get loose bowel. I have taken over 100 grams of vitamin C per day. Though currently I'm only taking 30 grams daily.
For info on vitamin C:-
http://www.orthomed.com/titrate.htm It's Dr Robert Cathcart's site. Or just do a search for it.

Have you considered HIGH DOSE FISH OIL? Dr Barry Sears can tell you about that.
Currently I'm taking a product called LYPRINOL. It seems to be FAR FAR SUPERIOR to all other marine oils. Just do a google search.

Hope this helps

Linda



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Re: ocular rosecea ?????????? Archive in rosacea.

Posted by Walt Stoll on June 10, 2003 at 07:36:43:

In Reply to: Re: ocular rosecea ?????????? posted by Dan O'Brien on June 09, 2003 at 11:28:51:

Thanks, Dan, for educating me about "ocular rosacea".

Now, if you want to pursue this, I need to know how long you actually combined aerobics, SR and a strict whole food diet. If candida is involved, how and what and how long did you do with the anticandida part of this IN CONJUNCTION WITH THE ABOVE?

Walt



Re: ocular rosecea ?????????? Archive in rosacea.

Posted by Dan O'Brien on June 10, 2003 at 08:52:12:

In Reply to: Re: ocular rosecea ?????????? Archive in rosacea. posted by Walt Stoll on June 10, 2003 at 07:36:43:

Hi Walt,

Thank you for responding. My entire anti-candida, whole food diet, and SR experiment lasted for 5 months. I began with a month of taking Primal Defense, and a good fiber supplement to clean out my intestinal tract. During this time, I also researched every anti-Candida diet recommendation I could. I combined info from my holistic doctor, Beth's whole foods diet book, The Yeast Connection book, and every internet source I could find. They all have slightly different slant on the "perfect, anti-candida diet". I combined all of these diets, and always used the most restrictive suggestions. After my intestinal clean-up, I began on a strict whole food diet, nystatin (4x800,000 for 3 months), 2 Kyolic garlic capsules per day, and 3 Oregamax capsules with 2 drops of Oregano oil under my tongue per day. With the exception of the nystatin, I continued this for 4 months. After the 3rd month, I began adding probiotics (iFlora). I began the SR during the intestinal clean-up phase, and have continued it to this point (I really enjoy it). The aerobics were an issue with me. I began to incorporating them, however, after 4 days I had to discontinue them. My facial flushing was just too intense with physical activity. I have to be very careful about anything which raises my body temperature. If I move from a room which is 70 degrees, to one which is 75, whammo instant, intense flushing (not that my non-flush face isn't red, but the pain factor goes through the roof). I initially thought I would be able to add the aerobics in a few weeks, when my rosacea began to curb, however, I never experienced a lessening of symptoms. I continued with this approach for 4 months. I know I was perfect with my diet Walt. I have to be perfect with every portion of my life, to avoid a flush. I still am following the whole food approach, with a few modifications. I have added a lot more red meat, chicken, and eggs (not that they were not allowed before). I also allow myself a glass of skim milk daily now, and some non-fat cheese every so often. After 4 months, I guess I figured I should have had some easing of symptoms. I wasn't expecting a cure, just some relief. It has been 2 months since I have been "perfect" with the diet. Can you see any problems Walt? Too short of a trial maybe? Any other ideas? Thank you, in advance, for any help you can offer.

Dan



Re: ocular rosecea ??????????

Posted by Nutmeg on June 10, 2003 at 12:45:58:

In Reply to: Re: ocular rosecea ?????????? posted by Dan O'Brien on June 09, 2003 at 11:28:51:

Hi Dan,

Are you exposed to chemical fragrances on a regular basis at home or work? I have rosacea, much milder than yours, and scents like perfume and essential oils, soap or lotions with fragrance added, air freshener sprays & plug-ins, and clothing or sheets washed/dried with scented detergent and fabric softener really cause a problem for me. These are the main things that make me flare up, aside from getting embarrassed, not getting enough sleep, or being in direct sunlight. I don't even have to get these things on my skin, although that definitely makes it worse. I keep my own home fragrance-free, but most people don't. Just inhaling chemical fragrances when I'm in a room with someone who wears perfume, showers with strongly scented soap, washes and dries their clothes with scented products, or where there are plug-ins, will turn my face bright red. Those pine tree air fresheners that people have in their cars are bad news, too. All I have to do is walk by a car with one of those on a hot or sunny day and I'm flaring. I have MCS, as well, so these exposures cause other symptoms, but the first is always facial flushing and that dreaded feeling of being hot.

Just wondered if you have regular exposure to any of these things at home or at work that might be keeping you in a constant state of flare-up. Are you able to walk for exercise? It sure sounds like you have a tough time of it. Hope you can find some resolution soon.

Wishing you the best,
Nutmeg



Re: ocular rosecea ??????????

Posted by Dan O'Brien on June 10, 2003 at 13:50:11:

In Reply to: Re: ocular rosecea ?????????? posted by Nutmeg on June 10, 2003 at 12:45:58:

Nutmeg,

Thank you for your input. I have explored the allergy, chemical, toxin, and pesticide exposure routes. I did not react, or test positive, for any of these triggers. I am currently using mold plates in my house to determine if that is an issue. It will take quite a bit of time for these tests to come back though.

I am not really able to exercise at all. I can go out for walks, but it has to be at night when the temps really drop. I also have to walk at a slow pace so I don't overheat, or really raise my heartrate (both cause intense flushing). It doesn't do me any good from a exercise point of view. I just do it to get out of the house.

Nutmeg, with all of your reactions to chemicals and odors, I would really pick up a book by Sherry Rogers M.D. titled "Detoxify or Die". She is a leading authority on chemical, pesticide, and toxin build-ups in the body. She describes not only what these substances do to your body (the exact symptoms you have listed), but also how to detoxify your body to get rid of these reactions. You can do this detoxing yourself. I really think this would do you an absolute world of good!!! Check it out!

Dan




Re: ocular rosecea ??????????

Posted by Nutmeg on June 10, 2003 at 18:39:57:

In Reply to: Re: ocular rosecea ?????????? posted by Dan O'Brien on June 10, 2003 at 13:50:11:

Hi Dan,

I hope you can find the cause of your symptoms soon. I really feel for you, for what your life must be like.

I've made tremendous progress with reducing my reaction to chemicals, and with overall healing, but still feel like I need to reduce my toxin load. I recently started a course of custom homeopathics that seem to be helping quite a bit.
Thanks so much for the book suggestion. I know of her work and have heard about that particular book, so I'm glad to also get a recommendation from someone who's read it. When I tried to order/buy it a couple of months ago, I couldn't locate a copy. Maybe it's more readily available now, so I will check it out.

Thanks again, Dan. Wishing you the best.

Nutmeg



To Nutmeg

Posted by Dan O'Brien on June 11, 2003 at 00:07:59:

In Reply to: Re: ocular rosecea ?????????? posted by Nutmeg on June 10, 2003 at 18:39:57:

Nutmeg,

Thank you for your help, and your well-wishes!

I was able to order "Detoxify or Die" from Amazon.com It was a great read, and really highlighted everything I had read here. For example, she really stresses getting your gut, diet, and candida in order first. Otherwise, your only going to re-absorb the toxins you mobilize. She REALLY stresses completely eliminating Trans-fatty acids from your diet, and your cell membranes (same as I've read here a 1,000 times). She holds without doing this, a person will never get better, no matter what they attempt. They simply do not have the correct body chemistry to make it work.

Take Care

Dan

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Re: ocular rosecea ?????????? Archive in rosacea.

Posted by Walt Stoll on June 11, 2003 at 07:18:23:

In Reply to: Re: ocular rosecea ?????????? Archive in rosacea. posted by Dan O'Brien on June 10, 2003 at 08:52:12:

Thanks, Dan.

Now, more questions:

1. How did you certify that your SR was working?
2. Did you ever think of starting with a regular exercise that did not increase your body temperature? Underwater exercises come to mind.
3. I still am not clear how long you actually worked with the combination? It seems to me you have put an inordinate amount of energy into the diet and not nearly as much in SR and even less in the exercise part.

If you had done as much in those 2 legs as you obviously have in the diet, and had combined them all for 6 months, you would fall into a totally different catagory for me.

Hope this helps.

Walt



Re: ocular rosecea ?????????? Archive in rosacea.

Posted by Dan O'Brien on June 11, 2003 at 10:01:12:

In Reply to: Re: ocular rosecea ?????????? Archive in rosacea. posted by Walt Stoll on June 11, 2003 at 07:18:23:

Walt,

1. How did you certify that your SR was working?

I learned the SR from a local therapist. I went for 4 sessions to learn the proper techniques. He used a system with multiple sensors (eight I think), to verify that I was learning it correctly. I have a ThoughtStream unit at home, to keep me on the right track.

2. Did you ever think of starting with a regular exercise that did not increase your body temperature? Underwater exercises come to mind.

I tried exercising with a large fan blowing directly on my face & misting my face with a water bottle, however, this did not work. I have tried to workout in local pools, however, the high levels of chlorine really do a number on my face. Your suggestion did just trigger a really good idea though. I have heard they now sell salt solutions to use in pools, instead of chlorine, and the others. Perhaps if I pick up the tab, one of my neighbors will allow me to convert their pool over.

3. I still am not clear how long you actually worked with the combination? It seems to me you have put an inordinate amount of energy into the diet and not nearly as much in SR and even less in the exercise part.

I did the combination of SR and strict whole food diet for 4 months together. As per my previous post, I have loosened up my diet slightly (2 months ago). I still religiously do my SR daily. I did completely neglect the exercise portion for those 4 months. I was hoping the SR, and diet would bring me some relief, and I could then begin to phase in the exercise. I was unsure if I continued to exercise, if I would continue to slide downhill. I did not want one portion of the program, to hinder the possible results of the other two. When I read on your rosacea archive that Candida was the likely culprit, this, and leaky gut, became my primary focus. Too one-sided of an approach?

Thank you for your help Walt

Dan

PS: I am a fellow CWRU grad.(1995), still live in Cleve. area.



Re: ocular rosecea ?????????? Archive in rosacea.

Posted by Walt Stoll on June 12, 2003 at 07:43:56:

In Reply to: Re: ocular rosecea ?????????? Archive in rosacea. posted by Dan O'Brien on June 11, 2003 at 10:01:12:

Thanks, Dan (fellow WRU grad--I know I am dating myself to still think of it as WRU against the "plumbers" [what we used to call the Case students).

It looks to me like your genes are going to make this more difficult than for most. My first suggestion would be to work with the neighbor and try to get the exercise leg working. If you can do all 3 legs perfectly for at least 6 months, perhaps we can see, by your results, what the next complementary option might be.

In the meantime, get your SR checked again for authenticity.

Hope this helps.

Walt



Re: ocular rosecea ?????????? Archive in rosacea.

Posted by Dan O'Brien on June 12, 2003 at 08:13:08:

In Reply to: Re: ocular rosecea ?????????? Archive in rosacea. posted by Walt Stoll on June 12, 2003 at 07:43:56:

Walt,

Thank you for your help. I will try to iron out the exercise portion, and give all three portions a 6 month run. Right now, it looks like my best (and only) option. I will let you know what I find out. -- Hey isn't that your line?

Dan



Re: ocular rosecea ?????????? Archive in rosacea.

Posted by Mikaela on June 12, 2003 at 08:52:00:

In Reply to: Re: ocular rosecea ?????????? Archive in rosacea. posted by Dan O'Brien on June 12, 2003 at 08:13:08:

Just wanted to say that I too have ocular rosacea, and my father has a severe form of it. The ocular rosacea has caused severe dry eye, light sensitivity, as well as a mild form of blepharitis. My main concern that I am tackling right now is eyelid swelling that seems to plague me especially at night and in the morning. I have taken virtually every test in the book, and nothing appears to be wrong with hormones, thyroid, etc. Just alot of "iodiopathic" swelling that the doctors can't diagnose.

It's funny; most people don't associate rosacea with eyes, but almost all vascular rosaceans suffer to a certain degree from this. Acne forms normally do not, unless there is major flushing involved as well. Which is often the case.

When I have a major flushing episode, I can literally feel my eyes "boiling" and watering, and the foreign body sensation.

In respect to the diet, I have found that a low carb - high fat diet while eliminating my triggers as well as my allergy foods works best for me. Its the insulin rush or sugar high that effects me the most... I do not think that it is linked with the leaky gut theory. Most rosaceans would have most luck on an anti-inflammatory diet. My facial swelling went down after only three days on such a diet.

I in fact can not take probiotics because I am highly allergic to yeast (brewers and bakers)and am very sensitive mushrooms and anything fungal, so taking things like Primal Defense would be counterproductive for me. Yeast is normally an ingredient in these.





Re: ocular rosecea ?????????? Archive in rosacea.

Posted by Dan O'Brien on June 14, 2003 at 22:47:27:

In Reply to: Re: ocular rosecea ?????????? Archive in rosacea. posted by Mikaela on June 12, 2003 at 08:52:00:

Mikaela,

On my last visit to my dermatologist, he gave me some abstracts from a couple of interesting studies being done. The first studied supplementing 100mgs of GLA per day in the diet. It has shown to be very effective, for some, in soothing ocular rosacea symptoms. Some have reported complete clearing. It takes approximately 2 weeks for any results to begin.

I do have any problems with the outer portions of my eyes (lids, lashes, etc.). A person on my internet support group had great results using the Photoderm procedure on their eyelids. Metal inserts are placed into the eye to protect it, then pulsed light is used (same as the face). They had three treatments, and swear by it.

Maybe some of this will be useful

Dan

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Re: ocular rosecea

Posted by
Rebecca on July 09, 2003 at 10:37:18:

In Reply to: ocular rosecea posted by sam on June 08, 2003 at 09:54:21:

I am new to ocular rosecea. I was recently diagnosed last week. I have had blurred vision for about a year and no one caught the rosecea. I kept going to get my prescription adjusted only to be told that my prescription hasn't changed. It wasn't until I visited a specialist that I was diagnosed. My eyes have been constantly inflamed and red particularly around the lower portion of the lids. I have swelling of my eyes when I wake up - sometimes I can't open my eyes right away. I have had two sties in the right eye that I have had drained. The specialist said my right eye in particular is covered with debris and bacteria. He started me on FML 4x a day for one week as well as bacitracin at night. Both these meds extremely sting my eyes. It feels like someone opened my eyes and poured soap in them. It usually lasts for 5 minutes or so and then goes away. The blurred vision bothers me since I have had it for so long. I particularly can't read text well on white paper. I work full time as a researcher - unfortunately not in the eye field, however so I am desperately trying to make contact with those who
suffer from ocular rosecea. My main concern is the blurred vision. I have an eye doctor appt. with a new doctor tomorrow. I am a little nervous. I am married and the mother of two year old twins so I don't have a lot of time to do a whole lot of research in this field. If anyone can provide me with any insight or support, I would truly appreciate it. God Bless You all - I have read some of your stories and it made me realize that I am not alone. You have all helped me considerably already.
For that I am grateful.
Rebecca
My email address is crusnak475@aol.com



Re: ocular rosecea

Posted by
susan on July 22, 2003 at 13:35:23:

In Reply to: Re: ocular rosecea posted by Rebecca on July 09, 2003 at 10:37:18:

I have also been diagnosed with ocular rosecea. I feel an almost constant irritation of my left eye. It gets worse if I get stressed out. In the winter time when the cold air gets in my eyes they will burn and water alot. If I am around chemicals or cigarette smoke it gets really bad. I am a hairstylist so you can only imagine with all the hairspray how bad it can get! I was told by my eye doctor to clean my eyes daily with a product called eye scrub. I also have to put a warm washcloth over my eyes for 5 or 10 minutes and then massage the lids along the lashes to help get the bacteria out. Also,I have to use drops for dry eye 4 times aday. I realize this is alot to do through everyday,but it's worth it if it helps!



Re: ocular rosecea ??????????

Posted by
susan on July 22, 2003 at 13:45:48:

In Reply to: Re: ocular rosecea ?????????? posted by Dan O'Brien on June 09, 2003 at 11:28:51:

I also have this horrible condition. I don't know if there is any conection between this and blood sugar levels because I am also hypoglycemic and several other people that have rosecea also have blood sugar problems. Could have something to do with it because when I eat too much sugar it effects my rosecea. I don't know if it is a direct result or the fact that too much sugar is a stressor to your body and in turn stress triggors rosecea flare-ups!!

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Re: ocular rosecea

Posted by
Rebecca on July 23, 2003 at 07:03:15:

In Reply to: Re: ocular rosecea posted by susan on July 22, 2003 at 13:35:23:

Thank you for responding to my post! Your condition sounds similar to mine. I have been on 100 mg of doxycycline for about a week and am doing the 5-10 minute warm compresses and the lid scrubs. Do you do the lid scrub immediately after the warm compress? I have been doing the compresses, lid scrubs and doxy for about a week now but have noticed that the redness and swelling is back. The redness had disappeared when I was on a steroid called FML for a week but after going off that and starting on the doxy I have noticed my eye is red and swollen again. My eye doctor informed me I have keratitis, blepharitis and conjunctivitis in the right eye and just blepharitis in the left so I suppose it will take awhile to get through all the inflammation. Anyway, it was so nice to hear from you. Thank you.

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