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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Thu Oct 6th, 2005 19:59 |
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Uveitis
Please see these links for explanations of uveitis:
Uveitis
Uveitis-simple explanation
Anterior Uveitis
Uveitis is one name for inflammation in the eyes. (Uveitis is inflammation of the eye structure called the uvea. Other parts of the eye can also become inflamed, caused conditions such as scleritis. They are included in the umbrella name "ocular inflammatory disease.")
"Uveitis is a symptom, and has many identified causes and associations at this point. Some cases are widely accepted to be due to bacteria or viruses. Other cases are associated with “autoimmune diseases” like Crohns disease and rheumatic arthritis. I suspect that these other cases are due to CWD bacteria. There are several interesting papers that explore this. The researchers found cell-wall deficient bacteria (sometimes called mollicute-like organisms) in the vitreous fluid of patients with sardoidosis, Crohn’s disease, ulcerative colitis, juvenile rheumatoid arthritis, etc." Dr. Trevor Marshall, Ph.D
Ocular pressure may increase as uveitis resolves
As the uveitis gets better, the eye often starts to produce more fluid before the inflammation decreases sufficiently in the eye's drainage system. When the pressure rises as the uveitis is going away, there might be a temporary imbalance between how much fluid is being produced and how much the drainage network of the eye can handle.
When uveitis gets worse, the amount of fluid produced usually decreases (which helps keep the ocular pressure at safe levels). Ocular pressure tends to rise in the presence of steroids.
Extreme light sensitivity is typical of uveitis
I would expect your doctor to be aware of this, and to anticipate that you would be very bothered by the lights. (This is true in general, not just with patients on the MP.) Adequate eye protection will be particularly important for anyone with eye inflammation. NoIRs
Balancing steroid use with using antibiotics
In terms of efficacy of the MP while using steroids in the eye, I can relate some of my daughter's experiences. (See also Teen on MP.) She has never been free of using steroid eye drops during the four years she has had chronic uveitis. (The lowest dose she has been on is four drops per day.) She also had one steroid injection, at the time of her first cataract surgery.
Despite using the steroid eye drops, her systemic symptoms have gotten so much better on the MP. We also never noticed eye herxing. I would suggest that someone with uveitis be closely monitored by an eye doctor while on the MP, and be prepared to adjust antibiotic dosing if it seems that there are any problems related to eye herxes.
Her eye symptoms improved while on the MP. Her second cataract surgery, after one more year on the MP, had a much easier recovery period than the first. Over time on the MP, her uveitis has slowly gotten better. We think that each eye surgery, and related medications, stalled her progress on the MP by at least 6 months. (She has had three eye surgeries, due to severe cataracts. Unfortunately, cataracts are a risk of prednisolone/prednisone use as well as of uveitis.) ~Margo
See an opthalmologist regularly
If you have active inflammation in your eyes, you should be seen pretty often by an ophthalmologist (ie, every six weeks). Over time, the Marshall Protocol should resolve such inflammation, but you could have occasional increases of inflammation (with Herxheimer reactions, for example) that could require some temporary medical intervention. In general, people with sarcoidosis are advised to see an ophthalmologist every six months.
I hope you have been able to see a specialist in uveitis, not just an ophthalmologist with an interest in uveitis. There are actually very few physicians who have completed fellowship level training in uveitis. While these doctors are not likely to know about the Marshall Protocol, they will have much more experience with uveitis (which is actually a relatively rare disease).
I would really urge you to contact the ophthalmologist who is on our Dr List who has experience treating uveitis with antibiotics. This doctor could best advise on balancing steroid use with antibiotics. The doctor may be willing to speak with you; I am sure that this doctor would speak with your MP doctor.
I traveled across the country to see various eye specialists for my daughter. Preserving your sight is so important that I really would urge you to consider such a trip.
MP supportive opthalmologists
There is a Neuro Ophthalmologist in PA and an Ophthalmologist in Wisconsin on our list of doctors who are available for consult only. Member will still need a primary health care provider for supervising the MP meds. You may also need to continue seeing a local opthalmologist to keep close track of eye inflammation due to immunopathology.
We highly recommend the opthalmologist in Wisconsin because he is aware that bacteria are causing the inflammation and he agrees that the MP is the answer.
Uou may post a request for the contact information for these opthalmologists here.
Uveitis specialist available for consult
Because uveitis is relatively rare, many eye doctors have treated very few patients with the disease. If you ask how many patients (over how many years) the doctor has treated with uveitis, and how many with your type of presentation, you may be shocked.
Any ophthalmologist can express an interest in treating uveitis; their experience and expertise vary. If you aren't able to travel to see someone, you can ask your doctor to consult by phone (or email) with another specialist.
Dr. Stephen Foster, in Boston, is a top specialist, and is very willing to consult with other physicians. (He won't know anything about the MP, but he has lots of experience treating uveitis and controlling iflammation after surgery in uveitis.)
If your eye doctor is reluctant to contact Dr. Foster, your family doctor can also consult with him, or can urge the eye doctor to do so. Dr. Foster will consult by phone or email. (You can write him directly, as well.)
Dr. Foster's contact info:
Dr Stephen Foster (Uveitis Specialist)
Massachusetts Eye Research and Surgery Institute
5 Cambridge Center 8th Floor
Cambridge, MA 02142
http://www.mersi.us.
Phone 617-621-6377
Fax 617-494-1430
Dr. Foster wrote a book on uveitis; he and his research group have published a huge number of articles on it. Because he is such a well-known specialist, he has seen more cases of uveitis than pretty much anyone else.
Here is a link to his background and publication details:
You can also contact the online patient support group that Dr. Foster supports. People there may have recommendations for doctors to see in your area.
If you are faced with eye surgery or complicated-to-manage inflammatory eye conditions (ie, uveitis), it would be a good idea to get Dr. Foster's input. You and your doctor may not want to do what he says, but he has much more experience in this area than almost anyone else. He is unfamiliar with the MP, and, in fact, considers most inflammatory eye disease to be autoimmune in nature (not caused by active bacterial infection. However, for managing essential eye surgery, we have also consulted doctors trained by Dr. Foster. ~Margo
Members experiences
Leesa wants to share progress
UVEITIS: I had my yearly eye exam and after a rather comprehensive check, was told "there is not any sign of Uveitis or Iritis and your occular pressure is 14 in each eye...the lowest it's been in years and years and years." I am so thrilled!!! ~DNStog
I was completely cured of severe uveitis by the very first stages of the Marshall Protocol. In fact I hadn't even started the full MP with Benicar when my eyes began to heal quite dramatically, just on minocycline. ~Julia
Most doctors only have experience with patients who are not on the MP. People with uveitis who are not on the MP don't usually get the degree of healing that is possible on the MP. At a recent ophthalmologist visit, my daughter's doctor wanted to show her intern my daughter's pupil. Her right pupil had become irregular in shape because of adhesions related to inflammation. When the doctor went to look at it, she (the doctor) was surprised to see how the pupil was no longer so distended. She said she never would have expected the change. For treating and curing uveitis, we have seen much more benefit from the Marshall Protocol. ~Margo
See this thread for Members experiences
See also:
Eye inflammation, vision, and bacteria
Will the immune response cause increased eye inflammation?
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Meg Mangin R.N.
Research Team
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Posted: Thu Oct 13th, 2005 21:44 |
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(filelink)
Renin-Angiotensin System and the Eye
The eyes have a complete renin-angiotensin system. Therefore, it's logical to assume that light falling on eyes without adequate protection from infrared rays will generate more production of 1,25-D.
Be careful about daylight and other light exposure. Many people find that even 15 minutes of daylight aggravates their eye condition. Numerous anecdotal reports confirm the effects of increased and decreased light on the eyes of patients with Th1 inflammation.
The renin-angiotensin-aldosterone system and the eye in diabetes
Immuno-localization of the calcitriol receptor, calbindin-D28k and the plasma membrane calcium pump in the human eye
-I am not sure whether the 1,25-D generated in the eyes is important at all. There are a number of retinal protein genes which are transcribed by the VDR, which is the reason eyesight fails as these Th1 diseases advance, and with advancing age.
I know of no downside to strict light avoidance. Fish and nocturnal animals have active VDRs, and active endogenous Vitamin D synthesis. For example, the Lamprey:
http://endo.endojournals.org/cgi/content/full/144/6/2704
Clearly many of these have little or no UVB exposure.
..Trevor..
Oct. 07 "The primary function of the retina is to act as host for the Rhodopsins, which are GPCR receptors which sense light. A molecule of Retinal is bound into Rhodpsin, and it undergoes a conformational change when hit by a photon. The charge shift resulting from this phase change is conducted through the retina and aggregated so that at some threshold, most experts seem to think about 5 triggered receptors, a sensory signal is then sent along the optic nerve to the brain.
1,25-D binds into Rhodopsin, and will competitively displace Retinal (unpublished modeling work by yours truly). Thus excess 1,25-D can directly interfere with the process of vision.
Additionally, several key retinal proteins are transcribed by the VDR, giving another pathway for the Th1 bacteria to inhibit the proper operation of the eyes." ..Trevor..
Production of 1,25-D by the eyes
Does exposure of a Th1 patient' s eye to light generates excess quantities of 1,25-D which then enters the brain or systemic circulations?
There is no data on this, and very little we can use to try and guess at the probabilities involved. Even the circulations are somewhat in question at the moment.
Earlier statements we made about this issue have been difficult to sustain with data, and I would, in general, back away from them. The biggest single problem is that it is becoming clear to me that what 'modern medicine' knows about the brain is very limited indeed, with many pragma, such as the blood-brain barrier, vanishing as the molecular biology becomes better defined.
It is important for folk who exhibit photosensitivity while they recover their health (which is nearly everybody) to protect their eyes fastidiously. The exact mechanism(s) remain(s) clouded, however.
..Trevor..
The renin-angiotensin-aldosterone system and the eye in diabetes
1: J Renin Angiotensin Aldosterone Syst. 2002 Dec;3(4):243-6. Related Articles, Links
Strain WD, Chaturvedi N.
Immuno-localization of the calcitriol receptor, calbindin-D28k and the plasma membrane calcium pump in the human eye.
1: Curr Eye Res. 1995 Feb;14(2):101-8. Related Articles, Links
Johnson JA, Grande JP, Roche PC, Campbell RJ, Kumar R.
Nephrology Research Unit, Mayo Clinic and Foundation, Rochester, MN 55905, USA.
Related FAQs:
The effect of light on the brain (amygdalla)
Why are my symptoms more intense after exposure to light &/or Vit D?
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Meg Mangin R.N.
Research Team
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Posted: Thu Oct 13th, 2005 22:03 |
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(filelink)
Members discuss their eye problems
Freddie Ash: great eye report 18 months of MP
Corneal edema
Severe iritis
narrow angle glaucoma since sarc dx
surgery?
Eye Floaters
Any hope for contact lenses after uveitis during or after the MP?
Eye Inflammation
Treating Uveitis
Teen on MP
Possible role of Antibiotic Eye Drops
SarcInfo Eye Posts
Assorted Eye Problems
Dry Eyes with Sarcoid
Eye problems, cataracts
Eyes Issues
New style of NoIRS!
This link about pterygiums says that they are often caused by sun exposure. In that case, the NoIR sunglasses sound like they would be helpful, too.
-I had developed uveitis over the last year with a significant bulge in my right eye as well as the iris/pupil area moving to the right and becoming off center and the color being black (my eyes are medium brown). In the last couple of days I have noticed that my right eye is now almost normal; the bulge has gone, the darker color as well as the off centeredness! I have only been on the mp for 5 months and look what has happened . My doctor noticed the difference in my right eye when I first went to him, so it is documented. 11/19/07~Toni girl
-Drooped right eye.
MP day 142 (17/05/06) I am not sure where this fits into things but it is now gone and my eyes are evenly open. I think this is a significant improvement. ~VickiSA
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Meg Mangin R.N.
Research Team
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Posted: Thu Oct 13th, 2005 22:16 |
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Studies and scientific papers
The Wirostkos published a paper on treating eye disease with an antibiotic:
http://tinyurl.com/5mwxm
"Age-related macular degeneration is an inflammatory disease possibly treatable with minocycline"
You can find all of the Wirostko papers on eye disease at this URL:
http://tinyurl.com/6fc35
Crohn's disease uveitis. Parasitization of vitreous leukocytes by mollicute-like organisms.
Johnson LA, Wirostko E, Wirostko WJ.
http://tinyurl.com/dh8th
Study Shows Bacterium Present in Eyes with "Wet" Age-Related Macular Degeneration
http://www.meei.harvard.edu/what/press.php
ARB reduces Uveitis due to bacterial toxin
Suppression of Ocular Inflammation in Endotoxin-Induced Uveitis by Blocking the Angiotensin II Type 1 Receptor
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Meg Mangin R.N.
Research Team
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Posted: Thu Oct 13th, 2005 22:22 |
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(filelink)
Relieving eye symptoms
You may find that warm or cool or wet compresses may help to relieve some eye herx symptoms. Make sure your hands are clean when touching your eyes.
The following suggestions may help relieve burning or tearing:
NoIRs: Indoors, TV, Computer, Outdoors. When in doubt or having frequent eye herxes, put them on. Leave them on. Dark ones for TV if your eyes are in pain with the light ones.
Eye mask at night: Kill all available light at night or during naps and eyes really do feel better. Without an eye mask my eyes were always tired from a night of ever-present LCD clock displays, charging mobile phones, other electrical appliances, and light that creeps in from cracks in the windows and under doors. I was surprised at the difference that little eyemask change made.
Inexpensive, fast, at-home eye spa: Circulation boost. One clean wash cloth cooled with cool water, then switch to clean warm wash cloth. Wring to nearly dry before applying--no drips (you don't want water IN your eye). Not Hot & Cold. Moderation, and only for a a little while each before changing to next. Feels good.
Blot: When they run, gently blot beneath runny eyes -- on face but not on eyes or sore lids at all. Never rub eyes. Tissue fibers do irritate. Avoid scented tissue, same concept here. ~JRFoutin
See also:
Dry eyes and eye drops
Last edited on Fri Dec 7th, 2007 18:42 by Meg Mangin R.N.
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Margo
Member Advocate
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Posted: Thu Oct 27th, 2005 14:33 |
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[filelink]
Cataracts
For background information, please click on these links:
Guide to catarcts
Cataracts
Cataract tutorial
Cataracts are a sign that something has disturbed the lens of the eye. In someone with sarcoidosis, the most likely cause is the sarcoidosis. Some other possibilities include eye injury, other kinds of eye infections, some medications (such as prednisone), etc.
If the cataracts do not affect your vision, there is no need to do anything about them. In fact, the surgery to remove the cataracts can stir up eye inflammation, so it makes sense to postpone it. Some cataracts remain small for a very long time, and do not require removal.
It is pretty common for people with sarcoidosis to develop eye inflammation. A number of people on the Marshall Protocol have had their uveitis resolve. Some have also had cataracts.
If your eye doctor thinks the cataracts are due to inflammation, then you have probably had inflammation in your eyes (undiagnosed, apparently). Inflammation in the eyes can cause cataracts.
Steroids taken as injections or eye drops can cause cataracts. There have been some studies on this, and the estimate is that something like 850 cumulative lifetime steroid eyedrops will result in cataract in 50% of people. High doses of oral steroids can make this happen much more quickly.
There is a possibility that you have (or have had) sarcoid inflammation in the eye. Not even all ophthalmologists have the very high resolution slit lamp that is needed to see inflammatory cells in the eye, so it is possible that the optometrist missed them.
Unfortunately, small cataracts can become big cataracts. You might want to schedule an exam with a specialist ophthalmologist to more thoroughly check out your eyes. It may be helpful to know that inflammatory eye disease (such as sarcoidosis can cause), steroids, and sun can contribute to cataract formation.
The Marshall Protocol should help by treating the sarcoidosis, which is likely to be the underlying cause of the cataract. Sometimes, however, one cannot tell what causes a cataract. ~Margo
Unfortunately, one of the causes of cataracts is prednisone. (Another is uveitis, which is more likely to strike people with Th1 disease.) My daughter developed cataracts in both eyes at age 12, from a combination of uveitis and prednisone use. She had one removed at 13, and one at 14. Both surgeries were successful; the later one, after more time on the MP, was smoother. She had lens implants in both eyes, which have been very satisfactory for her. (See Teen on MP.)
It is possible that you had a small area of cataract before, which has now spread to a more central area of the eye. If the cataract is on an edge of the eye, it may not affect vision at all.
The cataract, in itself, is not harmful to an adult (only to young children, whose brains need stimulation from the eye to make good connections from eye to brain). Since cataract surgery can also cause inflammation to the eye, it is better to postpone surgery until you feel you have made good progress on the MP. The eye surgeon needs to understand the risks, and take measures to control the inflammation. This situation makes cataract surgery is more complex than for older people with healthy eyes.
Cataract surgery
My daughter has uveitis due to sarcoidosis. She rapidly developed serious cataracts, which her ophthalmologist feels was due to the use of prednisone to attempt to control the uveitis. (This was before we knew about the MP.) We postponed the surgery as long as we could, until she was unable to read in one eye, and barely with the other. One cataract was removed, and then a year later, the other was removed. She has done fine recovering from the surgery, but each surgery caused increased eye inflammation. We estimate that each time, she lost about 8 to 10 months progress on the Marshall Protocol due to the surgeries and medications required by the surgeries.
At Teen on MP I’ve discussed my daughter’s cataract surgeries.
First, I’ll discuss the approach taken by experts, before there were any patients on the Marshall Protocol.
The standard approach to cataract surgery for people with a history of uveitis (taken by specialists in uveitis) is to delay surgery until the patient has had at least three months with no inflammation. Not all doctors insist on this, but then, many people have pretty bad outcomes from cataract surgery.
Some doctors won’t use a lens implant with uveitis patients, but many have had good results with that. There are many different types of lens implants available these days. I don’t know the technical issues relating to which ones are best. My daughter’s doctor recommended a heparin-coated plastic lens. There are some new lenses which change focus. Doctors don’t seem to be using these in uveitis patients, because they don’t know if the motions of the lens could cause problems. Over time, they will have more information about the pros and cons of these lenses.
In order to help ensure a good outcome, these doctors also often add an anti-inflammatory medication before the surgery, and continue it for some time afterwards (maybe 4 weeks). Eye surgery increases the risk of eye inflammation. The inflammation can seriously interfere with healing after the surgery. These anti-inflammatory medications include prednisone (oral, as eye drops, or as an injection around the eye), Remicade, methotrexate, etc. There is a new non-steroidal anti-inflammatory eye drop, Nevanac, which may be helpful in this situation. However, it is so new that one cannot really tell.
Now, to consider the patient on the Marshall Protocol:
The Marshall Protocol helps reduce the inflammation behind uveitis by getting at the bacterial cause. As the underlying inflammation is reduced because of killing off the bacteria, the risks of eye surgery should decrease for the uveitis patient. Since there haven’t been that many patients who have completed the Marshall Protocol, the actual numbers who have had eye surgery are quite small. Still, every on-the-ball ophthalmologist would much prefer the patient to have very little to no eye inflammation at the time of eye surgery. The Marshall Protocol can help patients reach that goal.
For any individual, the question remains as to whether he or she has reached the point of cure, or is simply doing much better than before. I think that great caution has to be taken not to provoke increased inflammation after the eye surgery.
Some general points regarding the eye surgery:
Cataract surgery is done in adults when the cataract is bothersome. (In contrast, in young children, cataract surgery can be essential because the growing brain needs to have input from the eyes to develop the proper visual pathways. In young children, if you wait too long for the surgery, it may be too late for the brain to develop these pathways.)
It is vitally important that any eye inflammation be very low or non-existent for a period of time (three months) before the surgery. After the surgery, there is a risk of increased ocular pressure. For the post-surgical period (1 to 2 months), the eyes need to be checked more frequently. Additional anti-inflammatory medication may be needed. In addition, eye drops that make the pupils move (dilate and then get smaller) are often recommended during this period. Inflammation in the eyes can cause adhesions to form, which can permanently change the shape of the pupils.
If you are planning to travel for the surgery, you should stay around for two or three weeks after the surgery, so the eyes can be checked and any problems addressed. I would have surgery on one eye and give that eye a year to heal before having surgery on the other eye.
I would also urge people to wait as long as possible before having cataract surgery, to allow them time to progress further on the Marshall Protocol.
Your cataract surgery will likely be easier, safer and more successful if you do the MP first (extrapolating from our personal experience).
If you need the surgery while you are in the middle of the MP, you can ask your doctor to discuss medication adjustments with Trevor Marshall.
My daughter had two cataract surgeries while on the MP, about fifteen months apart. She, too, developed cataracts due to anterior uveitis and steroid use. Both were successful, but the second one was more successful. We attribute some of that success to the progress she had made on the MP.
We were unable to wait on the surgery because her cataracts were so bad that she could barely read. ~Margo
Th1 inflammation increases risk of post-op inflammation
I'm glad that this doctor presented some other options. I'm inclined to agree with you that a more minor procedure (still surgery, but not as invasive) should be easier to tolerate. If you have to have it, make sure your doctor is aware that people with uveitis are much more likely to experience serious inflammation after the surgery than other people. Sometimes, an additional anti-inflammatory is needed (besides very frequent pred. drops). ~Margo
Members' experiences
-During an eye exam Dec. 20, the opthamalogist stated that he found absolutely no sign of cataracts. When asked if cataracts can be reversed, he responded with an unequivocable "no". Interesting because at my last exam 2 years ago (just as I began the MP) another doctor noted the start of cataracts, rating them 1 on a scale of 1 to 10. ~DesertMarie (on MP 1yr, 3mo)
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Parent of teen-aged sarcoidosis/uveitis patient on the MP
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Meg Mangin R.N.
Research Team
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Posted: Sun Oct 30th, 2005 13:09 |
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(filelink)
Glaucoma
For background information see glaucoma.
Inflammation of the eyes is associated with other eye problems such as glaucoma. Medications can control high ocular pressure and most may be used along with the Marshall Protocol.
Ocular pressure may increase as uveitis resolves
As the uveitis gets better, the eye often starts to produce more fluid before the inflammation decreases sufficiently in the eye's drainage system. When the pressure rises as the uveitis is going away, there might be a temporary imbalance between how much fluid is being produced and how much the drainage network of the eye can handle.
When uveitis gets worse, the amount of fluid produced usually decreases (which helps keep the ocular pressure at safe levels). Ocular pressure tends to rise in the presence of steroids.
Medication
If you have trouble with high ocular pressures, you should be able to use a pressure-lowering eye drop. There are many drops that treat high ocular pressure. Their side effects are less severe than prednisone.
You might be able to add one of those drops and then wean more quickly from the prednisone. In the long run, you run more risks from the prednisone (cataracts, glaucoma, osteoporosis, diabetes, etc.). The steroids are also suppressing your immune system, and are making it harder for the antibiotics to help kill off the bacteria that are causing the sarcoidosis. ~Margo
Steroid Use with Glaucoma
The following reflects my understanding of some of the issues related to using a steroid when there are concerns about glaucoma. I would advise anyone to check out their particular situation with their eye doctor.
Ophthalmologists describe some patients as steroid responders - which just seems to mean that some people will experience this pressure rise, and others will not. Patients can also do fine on prednisolone eye drops for many years, and then experience a rise in ocular pressure. Some people will never have this reaction to prednisone.
Many times, people with uveitis are treated with forms of prednisone (such as prednisolone eye drops), even if they have glaucoma, because pred. is the standard drug for quickly reducing inflammation of the eyes. The problems with ocular pressure are treated with additional medications, and the ocular pressure is regularly monitored.
I imagine that if you need to take a steroid sometime, the eye doctor should be closely monitoring the ocular pressure. You might not experience the pressure rise at all, but it is a good idea to have the pressures checked. ~Margo
Members experiences
jcwat101: Joyce wrote: My dad has open angle glaucoma. He has been on the Marshall Protocol for about a year. He is 83 years old and we have been going very slowly on the MP.
re: Opthamologist visit:
-The pressure in his right eye, the only one with significantly elevated ocular pressure, had decreased. So, perhaps the MP is helping it. We will be following the numbers over time.
-The vision in his left eye seemed to also have improved some.
Freddie Ash: great eye report 18 months of MP. My eye doctor found:
1) NO inflammation
2) NO granulomas
3) NO macular degenerate
4) The cataract in right eye was NO worse that last year.
5) Eye pressure was 7 and 8 in the eyes. That is even better than some that I have had, some have been 11, 12, 13 at time.
My eye doctor was well pleased with how the Marshall Protocol had helped my eyes.
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19130 |
| Status: |
Offline
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Posted: Fri Nov 4th, 2005 16:07 |
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(filelink)
Optical phenomena
Optical phenomena are not uncommon during the recovery process.
"I recently showed that 1,25-D directly activates the Rhosopsinreceptors in the retina of the eye. These are the sensors for light. They work in a complicated fashion, so I won't attempt to explain it here, but it is the high 1,25-D level due to killing of the intra-cellular bacteria which is causing your optical phenomena, not the meds.
The rod receptors in the eye are GPCR, similar to Angiotensin-II receptors. There is an Xray model available for Bovine Rhodopsin, and I used that to show that not only are the receptors activated by Retinal, but 1,25D has a high affinity for them too. I am guessing that the receptors are activated by 1,25-D (rather than de-activated), but we don't know enough about the eye to say that just yet.
It is believed that when a pool of about 5 adjacent receptors are simultaneously activated, the electrical signal so produced is sufficient to produce a pulse on the optic nerve. So sight is not based on a single receptor, but on a pool of adjacent receptors. When receptors are activated by 1,25-D (being formed in the eye by incident radiant energy), it will activate vision, but presumably by providing a continuous random stimulus. The optic nerve and brain then have to try and sort out where an image is, based on a consensus of false and true signals from the receptors in the retina.
Additionally, 1,25-D has the role of activating the VDR to produce several key proteins for the retina, without which the retina cannot remain strong and functional. The bacteria in the eye will obviously affect this process of transcription, which is probably why ocular symptoms (floaters, etc) are so common in these diseases.
It is important for folk who exhibit photosensitivity while they recover their health (which is nearly everybody) to protect their eyes fastidiously."
Dr. Marshall
Ocular migraine
During migraine processes, changes also may take place in blood flow to the area of the brain responsible for vision (visual cortex or occipital lobe). Resulting ophthalmic or ocular migraines commonly can produce visual symptoms even without a headache.
Ocular migraines generally are considered harmless. They are typically painless, cause no permanent visual or brain damage, and usually do not require treatment. Nevertheless, always consult your eye doctor when you have unusual vision symptoms, because it's possible that you have another condition requiring treatment, such as a retinal detachment, which should be checked out immediately.
Members' experiences
-I am in ph. 3 and have been on MP 2 yrs. I am also a diabetic so when I started having flashes of light also zigzag, I got panicky. The moderator is correct. Go to your ophthalmologist and have your eyes examined. They found nothing on my exam and in fact, took pictures of my retinas because they were perfect even after 45 yrs. of diabetes! This is unusual for most diabetics. But, the exam was thorough and relieved my fears greatly. And, I had it in both eyes, and it did eventually fade away. ~debbie y
-I may be experiencing a detached retina, but it could be something else. I got the symptoms a few times yesterday, but it disappeared. Now, the sxs are back. When I look dead ahead, there appears to be a black slash where my vision should be in the upper regions of my vision in my left eye; if I look up, it disappears. I've had these symtoms previously (over 20 years ago they happened on/off for a weekk or so) and they disappeared on their own without my ever seeking medical help.
Had my intensely light intrusive eye appointment this AM and was told that it was a "subjective visual disturbance," as there is no explanation for what I was experiencing. No physical evidence, no readily available "sounds like." I was told that if I lose part of my vision for a full day, to call the eye doctor the next day for an immediate appointment. This, of course, is why I didn't see an eye doctor 20 years ago when this happened for a couple of weeks straight: weird symptoms, no explanations. ~eClaire
-you may have experienced an ophthalmic migraine, which i have all the time. they are perfectly harmless, although they can be scary the first few times you have them...ha! ~Sunflower
Retinopathy
I am a type 1 diabetic on MP, on an insulin pump. I have had DM for 46 years. Since being on MP, I have not experienced any negative issues with my diabetes. In fact, my A1C has improved, my eyes show no signs of retinopathy and I am checked every 6 months - she even took photos of my retinas they were so perfect! ~debbie y
As was sorting through the genes transcribed by the VDR I noticed that several of them were involved with retinal structure. I suspect the improvements in your eyes are not just due to reduced inflammation, but also increased transcription of these retinal structure proteins.
..Trevor..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Margo
Member Advocate
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Posted: Mon Nov 14th, 2005 18:54 |
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[filelink]
Eye medications
Immunosuppressant eye medication
The MP is designed so that you can minimize the chance of eye damage due to increased inflammation by maintaining a tight Benciar blockade. Altering the antibiotic/s dose and scheduling will manage the severity of the immunopathology by slowing the bacteria killing and thus reducing the chance of eye inflammation.
Some people with severe eye inflammation may need to continue taking steroid eye drops to keep the inflammation down while killing the intracellular bacteria. If your opthalmologist believe you need immunosuppressant eye drops to temorarily control inflammation, it is okay to use them while on the MP.
Ocular pressure tends to rise in the presence of steroids....monitor this closely. See Eye medications
Minocycline will weaken the bacteria and Benicar enables the immune system to kill them. This often increases inflammation and may cause an increase in uveitis. Minocycline and steroid drops will need to be carefully balanced to avoid too much inflammation and the side effects of steroid use (cataracts).
Ask your doctor about changing from Pred Forte eye drops to one of the lower strength prednisolone eye drops (such as Pred Mild, or Lotemax). Initially, you might need more than one drop per day of one of those drops, but you might be able to decrease to only one drop per day, and then to one drop every other day, and so on. People are more likely to be successful weaning from prednisone when they wean very slowly.
-My daughter has been on the Methotrexate and the Predforte eye drops. (You can read more about her at Teen on MP.)
My understanding is that people generally wean from Methotrexate so they can tell at what dose their symptoms return. Otherwise, I don't think that weaning is necessary.
My daughter has had a lot of benefit from the Marshall Protocol while using Pred Forte eye drops - but we are concerned that the pred drops might be interfering with resolution of her uveitis. From my experience with my daughter, I imagine that you could benefit from the MP, even while using your current low dose of Pred Forte eye drops. If you can successfully wean from the pred drops, that would be even better.
Benicar is likely to help you wean down from the pred drops (just as it helps people to wean from oral prednisone). (There is also research that suggests that medicine in the same class as Benicar helps. ~Margo
Nevanac
There is a new NSAID just out called Nevanac. (Here is the link to the package label.) If your opthalmologist thinks your eye inflammation needs to be quelled perhaps s/he would consider this instead of a steroid.
-My daughter just got her first prescription for Nevanac eye drops. As the medication is quite new, not all pharmacies are able to get it. We called around, and found that the local university hospital outpatient pharmacy could order it. The eye drops come in a very tiny bottle - 3 mL size, probably containing 60 drops (estimating that there are 20 drops per mL). The manufacturer recommends one drop, three times per day, in each eye that is being treated. If both eyes are involved, that means 6 drops per day - so the 3 mL bottle will last ten days. Ask the doctor for a prescription that will maximize any prescription benefit that you are entitled to (ie, 3 bottles should cover 30 days). It's too soon for an update on the benefits of the medication, but we'll post updates at Teen on MP ~Margo
Antibiotic ointment
Pfizer markets Terramycin opthalmic ointment for humans in other parts of the world, and as a veterinary medication in the US. "Versatile antibiotic ointment with broad-spectrum antibacterial activity against gram-positive and gram-negative organisms." Some people on the MP who have anterior uveitis have reported it to be very helpful. It should penetrate the front part of the eye, just as the various eye drops used to treat uveitis do (ie, pred forte, nevanac).
-My daughter found that timolol bothered her eye, but occupress was fine. Occupress is quite similar to timolol, but the side effects were different. She doesn't notice the occupress. Occupress is only available as a generic, and is inexpensive. Neosporin Ophthalmic Solution and Polytrim Polymyxin B/Trimethoprim ophthalmic were also suggested for our daughter.
See also Dry eyes and eye drops
If you need temporary relief of your eye symptoms, contact your opthalmologist, doctor or pharmacist for advice about palliative medications. Any medications that are not on the list of Medications To Avoid While on the Marshall Protocol and Should I stop taking any of my medications?
Last edited on Fri Mar 21st, 2008 17:03 by Meg Mangin R.N.
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Parent of teen-aged sarcoidosis/uveitis patient on the MP
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Meg Mangin R.N.
Research Team
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Posted: Sat Nov 19th, 2005 13:50 |
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(filelink)
Eye exams
"For routine eye exams, I would rather see an optician, who sees lots of healthy eyes, than an ophthalmologist who tries to put my eyes into specific "sick" categories.
..Trevor..
If you have sarcoidosis or symptoms of eye inflammation, it is recommended you have an initial visit by an ophthalmologist (a Medical Doctor) to be sure you do not have problems that need specific treatment.
In general, people with sarcoidosis are advised to have at least annual eye exams. If you have any problems that the doctor is following, more frequent exams could be a good idea.
Let the clinic know ahead of time that you have sarcoidosis, so that the doctor can be sure about what s/he's looking for.
Try to plan your eye exam for a day when you are less likely to be suffering significant immunopathology.
An increase in Benicar dosing may help to minimalise symptoms due to any extra light exposure.
The eye exam should include a painless (numbing drops are used beforehand) procedure to measure ocular pressure. Inflammation or steroid use (even topical PredForte) can cause increased pressure in the eye which could cause irreversible damage. An increase in eye pressure is often painless, so it's important to measure eye pressure with each eye exam. It isn't necessary to dilate the eyes before ocular pressure is measured. If eye inflammation is present, your doctor may want to exam your eyes monthly.
Members' experiences with light during eye exam
-I haven't found that the bright lights used in the exam caused me any discomfort. They will probably dilate your eyes, and so you won't have the pain that can occur when the pupils try to constrict with the natural reaction to bright lights. Although, my ophthalmologist examined my eyes with the slit lamp one time, about two years ago, without my eyes being dilated, and didn't have any pain with it then either.~Lottie
-I asked my daughter her take on this. She has sarcoidosis and uveitis and has had eye exams every 2-6 weeks over the last five years, many of them with dilated eyes. (Uveitis makes people exquisitely sensitive to bright lights - even before being on the Marshall Protocol.)
She says that if you tell the doctors that you are very very sensitive to bright light, they can turn down the light they use to examine your eyes. They can also dim the room lights. (They might not be accustomed to doing this, but they can do it.) You can explain that a treatment you are on for your sarcoidosis makes you very sensitive to light.
Before they put in dilating drops, ask to speak to the doctor. They can (and probably should) do part of the exam before the dilating drops. You can ask what they might miss if they don't use dilating drops. If they do use them, ask that they use as few as possible (as a lower dose is easier to tolerate). There are also some formulations that wear off more quickly, so you can see if they have that. (Our eye doctor uses a mixture they make up at the local eye hospital of 0.25% Phenylephrine hydrochloride and 5% Tropicamide. This makes the eyes dilate, and then go back part-way to normal. ~Margo
-As a veteran of many, many eye exams on the MP (and before), I can tell you that you'll just have to endure the light in the eyes for the exam, as there is no way around it. The doctors cannot tell what is happening in your eye without looking in with that bright light (the slit lamp). My experience has been that while uncomfortable when it's happening, it has not induced a flare of the uveitis or any IP symptoms.
My best advice is to look not directly at the light, but around it. They'll tell you to stare straight in, but I usually look off to the side, to a darker part of the room, or the doctor's shoulder or something. All they really want is your eye to stay still and not move around. So focus on something beyond or beside the light itself, that makes it a little more bearable. Tell them beforehand that you are light sensitive due to some meds you are on, and to please be as quick as possible. It doesn't last very long, and hopefully won't do you any real harm. ~Joy
-Let the dr. know how light sensitive you are and hopefully he can make the exam as quick as possible. I would ask him/her to use the reversal drops after he dilates your pupils when he/she is finished. This will help you immensely the rest of the day so you won't be even more light-sensitive. ~VEZ
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Meg Mangin R.N.
Research Team
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Posted: Sat Nov 19th, 2005 13:54 |
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(filelink)
Dry Eyes and eye drops
For background info see dry eyes and dry eyes
Restasis eye drops
Restasis is cyclosporine, an immune suppressant (as you mention in one of your earlier posts).
In general, drugs like cyclosporine are contraindicated while on the MP. Restasis, a form of cyclosporine now offered in eye drops, is heavily promoted these days for people with dry eyes.
We would advise people to use articial tears (preferably the single use packets, made without preservatives, since the preservatives can also be irritating). Higher humidity at home, NoIR glasses, turning down the computer monitor are additional things that can help with dry eyes.
Besides being irritating, dry eyes can impede vision, and may cause corneal problems. A quick internet search indicates that Restasis is not associated with cataract formation or the development of glaucoma, unlike prednisolone. That may be the main reason it is a front-line prescription treatment for dry eyes.
In weighing the side effects of using either pred. eye drops or Restasis eye drops, where the systemic dose of the drug is quite low, I would personally pick Restasis. Eye doctors recommend pressing on the punctum after using eye drops, to decrease the flow of the drops into the blood stream.
As you progress on the MP, you should see if you can wean from the Restasis eye drops. ~Margo
Optive eye drops
Optive, an eye lubricant, is a safer option than Restasis.
See artificial tears for a list of products that lubricate the eyes.
-It is not unusual for Sarcoidosis patients to have "dry eye". Which sounds strange when a person is told that by their ophthalmologist, because "dry eyes" tend to water a lot, with tears running down their face. When I said, "How can they be dry when they're watering all the time!!??" My doctor kept trying to explain to me that it's not the same tears, that the tears that run down your face, are the ones that also appear when you cry or when your eye is irritated, and they don't lubricate the eyes.
Finally, it dawned on me, and I asked him, "So, there are two different tear ducts?" He nodded, "yes", and told me that the problem is that the tears that are necessary to maintain the moisture in the eyes are the ones that are missing or reduced by the inflammation of Sarcoidosis. And, so lots of the "crying" tears are manufactured in an attempt to maintain moisture in the eye. Since they aren't very good at it… it takes a lot, and they run down your face.
The reason that I mention "dry eye", is that it can also affect your vision. My left eye is my worst as far as being dry… or "watering". And, sometimes, my eye doesn't water much, if at all, and yet my vision is bad. Nothing will focus. Finally, it will dawn on me, and I use artificial tears… and my vision clears up!!
What really lets me know that it's dry is that I can often put FOUR drops of artificial tears in my left eye and none of it runs out of my eye. At the same time, I put two in my right eye… and it runs down my cheek. And, that can happen whether or not the left eye has been "tearing". And, you only want to use plain artificial tears for "dry eye". Not any of the ones that have ingredients for "red eye", allergies, and such." People also report preferring preservative-free articial tears to the ones with preservatives. ~Lottie
See Treating dry eye with punctal plugs
-I found the artifical tears were not working well enough for me, had to use them at least once an hour. I got the lubricating drops and they're working much better (Walmart's Equate "Gentle Lubricant Eye Drops) ~Jillian
-night time product for soothing dry eyes. It is actually an ointment developed for dry eyes that bathes the eyes all night...much thicker and longer lasting than the gel drops. The ointment causes blurry vision which is why it was developed for night time use. Works great! called Refresh PM gel by Allergan. CVS, a US drug store chain, duplicated it as CVS Lubricant Eye Ointment, nighttime relief. This product has been out since Feb '04, but has history of being sold old in the stores. US folks can order it from drug store. com. ~DNStog
-For dry eyes I use Bion Tears. They don't have preservatives which can cause trouble in some people. My eye man prescribes three boxes at a time with aspecial authority and I get them at the PBS basic cost for the three. I find they are very good. ~Eliz
-warm or cool and / or wet compress and resting, and resting your eyes with an eye mask may help.
-Adequate eye protection will be particularly important for anyone with eye inflammation. See Protecting Your Eyes
Will the immune response cause increased eye inflammation? If you are concerned please check with your Opthalmologist. It is important to visit a health-professional when you need advice about your eyes.
-I just wanted to let you and others know about my solution for painful dry eyes, especially while sleeping or first thing in the morning for me. I bought a case of these small reusable bottles from a pharmacy that deals with a lot of specialty stuff near here, filled with pure sterile saline (water at the same salinity as our bodies) which is normally used to flush out IV lines before they start IVs. I put a needle that screws into a syringe into the rubber top, and whenever my eyes are bothering me, i just unscrew the Luer lock syringe (you leave the needle part stuck in the bottle permanently) and drop some saline into my eyes. i look right to left a few times and this distributes it well. Instant Heaven.
I do this because i react to EVERY product out there for eyes. And it took me a long time to get this figured out. I tried putting this saline into a dropper bottle and using that but i eventually ended up having something akin to an infection, probably because the dropper was getting dirty and going back into the source bottle. The way I have done if for months now there is really no way for germs to get into the source bottle. ~Satay
-my tear ducts are producing their own/adequate tears now. on the MP for 3 mos. About 10 yrs ago I was told that they weren't producing enough tears and have gradually been using more and more artificial tears - especially upon awakening in the a.m.'s. When I would wake up my eyes would feel so dry it was scary and my eyes would literally BURN when I put the drops in!!! . . . and I've only been - WOW! ~Elisabeth
See also:
Dry Eyes with Sarcoid
Eye medications
Relieving eye symptoms
Last edited on Mon Jun 23rd, 2008 16:26 by Meg Mangin R.N.
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Meg Mangin R.N.
Research Team
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Posted: Sat Nov 19th, 2005 13:55 |
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(filelink)
Improved vision with the MP
Presbyopia (near-sighted)
Shrnhml: My prescription for glasses has not changed in four years, whereas in the past I have always needed a change every four years.
DoveIndian: I went to read something this morning and I put on my glasses and I could not see, So I took off my glasses and I could see what I was reading.
Meg: I had a similar experience recently when I found I no longer need the near vision portion of my progressive eyeglasses. This article on presbyopia states it is an age related disease. And:
"These age-related changes occur within the proteins in the lens, making the lens harder and less elastic with the years. Age-related changes also take place in the muscle fibers surrounding the lens. With less elasticity, the eye has a harder time focusing up close. Other, less popular theories exist as well."
IMO, inflammation is the likely cause of this loss of elasticity in the lens and surrounding muscle fibers.
You are at the age where presbyopia commonly develops and that may be impacting your vision. I'd like to think that inflammation plays a part in the diminishing ability of the lens to accomodate both near and far vision but we haven't seen that yet even though some folks have reported their near vision has improved on the MP and others have reported improvement in far vision.
Note, though, that improved near vision may be due to early cataract formation.
Sam (Shamutooth)...after about 8 months on MP, I was able to stop using my reading glasses that I had needed for almost 20 years. My vision problems started when I got sick, and I had always wondered if the two were connected somehow.
Rico: Nikki can read a book without her reading glasses - first time in a few years when she first starting needing reading glasses!
Sherry (Scooker48): I am reading without contacts. I'm not sure my prescription has changed, but I don't recall doing this for years. However, yesteryear I wore hard contact lens, and now I'm using daily disposable contact lens. It was impossible to read after removing the hard contact lens from my eyes; and now I have no problem once the daily disposables are removed. I will have my eyes checked in the fall.
Note: A temporary improvement in near vision is also a phenomenon of a beginning cataract. Age-related cataract formation can begin as early as age forty.
-My Dr. was so impressed with the healing of my r. eye and eyes in general. I had severe corneal abrasion, infection with long hard recovery. Vision went from 20/20 to 20/400. Now back to 20/20. Dr. is most interested in MP and going to research it. He is Pres.FL. Opthmathological Society & the best corneal specialist in S. FL. ~medaesth
-I had my annual eye exam, and my prescription is improving. For comparison, my prescription in January 2006 before I began the MP was OD: -3.25 -.75 x 50, OS: -3.50 -1.75 x 120. Now it is OD: -3.00 -.75 x 70, OS: -2.75 -1.25 x 130. ~Elizabeth
-My eyeglass prescription improved in one eye from O. D. -2.25/-1.50 to -2.00/-1.50. ~RoseRTT
Distance vision
Gary: Phase Three: Yesterday afternoon, before taking my abx, I did notice one symptom getting better that really surprised me.
Starting about 10 years ago - about age 40 - I started using reading glasses, first as weak as they came, but soon up to +2.50 or +2.75. About 4 years ago I started needing some very mild correction +1.25 for distance. Even things very far away were clearer with the +1.25, and they were essential within a typical sized room. I still needed the +2.50 for reading.
Yesterday when leaving work, I noticed some things in the distance weren't clear. So I took off my glasses, and whoo-hoo!! things were clearer with just my good old eyeball. Currently my eyes alone are only clearer than the glasses for objects over about 50' away... but its a start!.
Central vision loss
-I don't want to jump the gun here but very excited to report something! Years ago when I first flared ('90)...I lost a good part of my central vision in my left eye. My right eye has compensated for this so it only seems to affect my reading...tire easily. Not knowing that I've had Sarc all these years my opthamologist examined this and told me it "appeared" to be a pit on my optic nerve and that there was not anything that could be done to regain my sight. I have had several visual field tests done and intend to make an appointment for a re-check to see what has changed. I have noticed that I am seeing in a wider field area that has come on gradual since being on MP! It is something big to me after all these years...I don't know if it is too much to hope for that I will regain this sight but I am hopeful! This loss of vision took up about 1/3 of my central vision in my eye, extending from side to side...there is now a very thin line of vision loss and is only centrally located as compared to before. So not only has the central vision improved but blindness on each side is gone. WOW! BIG WOW! ~Deb Grabetz
Far-sighted vision
-I've read comments by some folk on the MP regarding improvement in their vision and I am writing to report MY VISION HAS IMPROVED at 52!
I decided to try once again to get some prescription glasses to wear around the house (so I could stop looking 20+ years older with my NoIR fitovers), and because it had been 17 months since my last eye test, I decided it would be wise to have my eyes tested again. The doctor tested my old prescription and said he was surprised at how strong my biofocals were (I am farsighted and with farsighted people all over vision gets worse and worse with age, including close up, versus nearsighted people whose nearsightedness typically gets better while their close up vision gets worse).
The eye doc said he can normally predict how strong biofocals should be based on the person's distance vision and her age. He said my previous prescription had me pegged around age 60. So not only has my prescription gotten better, I've gotten younger!
He also told me that the quick decline in my vision (it took about two days to go from 1.25 bi-focal to 4.50 & 4.75 where it has stayed except for a slight worsening in the left eye) was not normal. This occurred a year and a few months before I became totally disabled--actually during a time when I should not have been working.
Additionally, I used to have noisy vision pre-MP. If you can imagine ink on the printed page being wet and have an extremely fine wire brush whisk some of the ink out from the letters, this is what I saw whether on the printed page or on the eye doctor's wall. I've noticed in the last year, that the noisy vision has gone away as well. Now when I select the clearest print in an eye test, the letters are nice and crisp (not looking like they are hairsuit).
I still have a ways to go vision wise (I'd be happy just to make it back to the kind of bi-focals one can pick up at 3 for $10), but I'm on my way! ~eClaire
Lyme
-JAQ was examined by her Opthalmologist. She last saw her in April 2006. This MD was also an Immunologist who as a premed student at Stanford University worked on the Lyme Laboratory testing for the Western blot and Lyme Disease AB Screen. In 2006 she could "visualize" the inflammatory Lyme Disease changes in her eyes that correlated with JAQs positive laboratory results at Quest, Stanford University & Igenex. During this current exam the MD noted 1) all of the inflammatory changes that were present at your last exam have returned to normal 2) the pigment of your eye (this is an eye surgeon) has lightened dramatically from your extreme light discipline during your protocol. JAQ has noted that her eyes have steadily changed color over the past months since starting the NOIRs in Sep 2007. This MD has diagnosed alot of Lyme after her visual exams as she determined the need she will send patients to the lab. She was extremely impressed with her progress and have seen that most patients eyes continue to show later stages of Lyme and high inflammatory changes over time.
Last edited on Thu Jun 26th, 2008 14:14 by Meg Mangin R.N.
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Meg Mangin R.N.
Research Team
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Posted: Thu Jan 18th, 2007 23:36 |
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(filelink)
Contact Lenses
There is some risk of increased infection with contact lens use. See "(Microbial Keratitis Complicating Penetrating Keratoplasty)", for example.
Contact lens use is also associated with dry eye.
For anyone who has recently had uveitis, I would suggest carefully discussing the risks of contact lens use quite carefully with an ophthalmologist who has advanced training in treating uveitis.
Members experiences
Juli: today is the first day in over a year that I have tried to wear my contacts. I started wearing my glasses due to dry eyes. I didn't make the connection with sarc until I started the MP. I didn't realize how much my eyes had improved until I put my contacts in today. They feel great! Yay! I even ordered the fashion non-fitover NoIRs today. Feeling good!~
Vicki SA: I finally got my #35 NoIRs and I love them! I wear contact lenses or precription glasses and so can wear the #35s with my contacts.
Compared to the Spectrashields and my glasses, the #35s and my contact lenses are a full open view of the world! I can forget that I am wearing sunglasses at all! Brilliant.
Sherry (Scooker48): I am reading without contacts. I'm not sure my prescription has changed, but I don't recall doing this for years. However, yesteryear I wore hard contact lens, and now I'm using daily disposable contact lens. It was impossible to read after removing the hard contact lens from my eyes; and now I have no problem once the daily disposables are removed. I will have my eyes checked in the fall.
Barbara: I went to my eye doctor the other day and he was quite surprised to find that the corneal edema in both my eyes has resolved. In fact, they are almost back to normal and I can wear soft contact lenses again. Hurrah!
Carol: One of my herx symptoms is an irritated feeling in my eyes. They just feel dry. Today I realized that wearing my (soft, disposable bifocal) contacts makes my eyes feel better. So I guess my eyes really are dry and the contacts help this.
PatrickBurke: I have been wearing "Bausch and Lomb" "Purevision" lenses and using "Sauflon" "Synergi" fluid. I can detect absolutely no difference in IP whatsoever between wearing these or spectacles. However,  , if I have a particularly strong eye herx then the usual minute or so of settling in time after inserting them is slightly longer and more uncomfortable.
Lori: I wear my contacts all the time, but there will be times when your IP will leave your eyes feeling like the last thing you want to do is put your lenses in. I wear hard lenses, so I use my glasses on those days. Sometimes when I eat certain foods that I have problems with, I will notice an increase in dry eyes and swelling on the lids.
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Meg Mangin R.N.
Research Team
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Posted: Sat Apr 14th, 2007 02:44 |
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(filelink)
Eye inflammation and CFS
Melissa Kaplan's
Chronic Neuroimmune Diseases
Information on CFS, FM, MCS, Lyme Disease, Thyroid, and more...
Last updated February 27, 2004
Keep Your Eye on CFIDS
The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Eye problems are another part of CFIDS that have been poorly studied, but the neuro-ophthamological manifestations are varied and quite common. A few years ago, Alfredo A. Sadun, MD, Ph.D, made a surprise appearance at a CFIDS support group in California. Only the leader knew the reason he came. The other 44 PWCs filled out a questionnaire and, before leaving, had a simple examination. Dr. Sadun, a professor of ophthalmology and neurosurgery at the University of Southern California School of Medicine, found all 44 reported some ocular complaint.
Nearly every PWC had asthenopic symptoms (tired eyes, sore, watery or weak). Blurred vision was reported in two-thirds of the group that was greater at near while one-half said blurred vision also occurred at a distance. Oscillopsia (bouncing or jiggling of the vision) as reported in one-quarter of the PWCs, while seven complained of double vision (diplopia).
Objective signs showed 23% had a primary horizontal nystagmus and another 18% had a very obvious lateral gaze nystagmus. In a healthy population, only 5% will be found with lateral gaze nystagmus. This astonished Dr. Sadun since this effect is always pathological (i.e., something that arises from a disease).
A few patients were then examined in greater detail. These PWCs showed abnormalities in accommodating which is "a process by which the curvature of the lens changes." In simple terms, the PWC takes much longer to clearly focus on an object that is brought from far to near as well as focusing at close range. Muscle weakness would not explain this nor would the elasticity of the lens.
"Limitation of ductions" was noted and all the abnormalities found point to brain cell dysfunction. In fact, a brainstem encephalitis could include all of the above problems.
Treatments for dry eye are artificial tears sold over the counter. Those with focusing problems or blurry vision should not wear bifocals. These acquired defects are especially found in the first year of CFIDS and getting prescription lenses could compound the complaint! Half-glasses also have a negative effect. Bifocals and half-glasses only make the defect worse because the center of the focusing mechanism has to "jiggle back and forth across two different visual corrections." No-line multi-focals with graduated lenses are still worse and may cause a PWC to stagger, become uncoordinated, and disoriented. Two pair of glasses should be purchased. One is for reading and the second for distance viewing.
Many PWCs are light sensitive and many doctors have noted this. Severe PWCs may have to wear sunglasses while inside. Very dark sunglasses that cut UV light as well as visors are suggested as a coping technique.
British Doctor Says It's All in the Eyes
Originally published by the London Daily Mail, August 11, 1996 and reprinted in The MEssenger in September 1996. A note from the editor prefaces The MEssenger article, stating "Most readers have suffered enough dashed hopes that they now take miraculous breakthrough stories with a large grain of salt. Nevertheless some of them provide a reason for hope - none more than those which suggest a clear, simple way to diagnose CFS/ME. "
Dr. Ian James, consultant and reader in clinical pharmacology at London's Royal Free Hospital School of Medicine, believes he has found a way of diagnosing Chronic Fatigue Syndrome and hopes to develop it into a treatment program.
The breakthrough came after months of research spearheaded by Dr. James and Prof. John Barbur of London's City University. It centres around the discovery that the eyes of ME sufferers respond to light and motion stimuli in an unusual way.
"Several doctors treating ME patients noticed they showed an abnormal pupil response," says Dr. James. "When the pupil is subjected to changes in light or is required to alter focus from a close object to one further away, it does so by constricting and dilating.
"ME patients' eyes do this as well, but there is an initial period of instability when the pupil fluctuates in size."
Using a computerized "pupilometer" which precisely measures eye response, Dr. James embarked on a detailed study of this phenomenon on ME sufferers, using non-sufferers as a control.
A variety of shapes was flashed onto a screen and moved across it while a computer precisely measured pupil reflex to each of the 40 tests. Result confirm that the pupil fluctuation was peculiar to those participants who suffered from ME.
Dr. James concluded the abnormal pupil response is a result of some kind of interference in the transfer of impulses from the brain to the eye.
He believes ME is the result of a deficiency of a neuro-transmitter called 5HT, whose job is to pass impulses through nerves to cells. The eyes of ME sufferers treated with 5HT behave normally.
"I do not yet know how the ME virus causes abnormalities in 5HT transmission but it does inhibit its function," says Dr. James. By administering drugs to stimulate levels of 5HT together with treatment aimed at fighting postviral disease, Dr. James believes ME sufferers can be cured.
"I believe that ME is a problem of the brain, a neuro-pharmacological disorder. The people I see are very motivated towards getting better. ME can mean they are bedridden for years, yet they look quite well so people have no sympathy. I believe there is a physical cause for ME but there is undoubtedly a strong link between it and the psychological make-up of the sufferer.
Many sufferers are perfectionists who take on a mammoth work load. They cannot switch off. If they are laid low by a virus, they do not recover from it properly and there is where the problems start.
"It may be that their psychological make-up renders them vulnerable to ME. But it is not the cause...There is no evidence of structural damage to the brain, so everyone is capable of recovery from ME."
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Meg Mangin R.N.
Research Team
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Posted: Thu Jun 21st, 2007 18:11 |
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