Topic: Multiple, severe eye problems, due to TBD's---Help!
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I saw my LL opthalmologist 3 1/2 weeks ago and was supposed to go back again, but had to cancel twice, due to being in too bad shape to go out of town to see her!
I was shocked when I last saw her, as I knew that I had multiple, serious eye problems due to TBD's. But it has gotten WAY worse, just since the end of last July.
(Sorry for the long post!!).
I now have:
* cataracts--multiple!!! (Never had a hint of them before)
*much higher eye pressure (a bad risk for macular degeneration)
*worse Retinal Epithelial changes (another bad risk of macular degeneration)
*Sjogren's from the Lyme, causing bad dry eyes and mouth (causing my teeth to fall apart, too)
*Severely worse eye-sight. Used to have pretty good distance vision, now can't see the first line on the eye chart!! And my close-range, mid-range is far, far worse than that.
I just had to reschedule today's visit for next Tuesday. I am completely overwhelmed, as my eyes are just ONE part of me that is completely falling apart, due to the disease process
completely taking over, due to not being able to treat adequately, due to one treatment obstacle after another.
I am supposed to do 4 different eye drops per day, one of them every 2 hours, the other 2 (which I don't have yet) 4 times per day.
The LL opthalmologist, who REALLY knows the effects of TBD's on the eyes, says that this is ALL due to the effects of the
inflammation and oxidation processes from the infections on my eyes. And stuff I take orally and IV she said can't get to the eyes much---although, of course, I will continue them.
Any help anyone can offer here besides the obvious?? I will do everything she says, although it is massively difficult, because
my eyes are not the worst of what I am experiencing, although my vision loss is extremely distressing. I am living in drug-store reading glasses (NOT good!).
I will get some mangosteen juice and try that, too, as several people have found that to be good.
And I need a new tx protocol and really a new TBD doc (not an easy thing here now).
HELP!
[ 06-03-2013, 10:18 PM: Message edited by: Rumigirl ]
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glm1111
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I strongly suggest that you look into treating parasites/worms.
They are now considered the number one co-infection of Lyme and often overlooked even by the best LLMDs. I had very bad eye problems incl cataracts before I started going after parasites.
Filarial worms were found in the original ticks Burgdorfer dissected. Google parasite symptoms and check out the PARASITE WARRIORS SUPPORT THREAD.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote:Originally posted by glm1111: I strongly suggest that you look into treating parasites/worms.
They are now considered the number one co-infection of Lyme and often overlooked even by the best LLMDs. I had very bad eye problems incl cataracts before I started going after parasites.
Filarial worms were found in the original ticks Burgdorfer dissected. Google parasite symptoms and check out the PARASITE WARRIORS SUPPORT THREAD.
Gael
Thank you Gael, for the reminder. I am trying to treat them (and have a lot before).
However, I am juggling so many different infections/treatments. I will have to figure out a triage treatment---figure out an order of treatment. It is hard, because I can't make drs give me what I need, but I will have to be creative here. I already have been, of course.
If you have used rx remedies for parasites, could you please PM what you think has been helpful and where you were able to get it? Thank you! I have done herbs for them plenty before, but think that I need more than that.
Oh, yeah, I see, I will go to the Parasite Warriors thread.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Wow... very very sorry to hear all of the above!!! What a frightening thing to have your vision deteriorate so quickly.
There are some special OTC drops my Dr told my husband about but we didn't buy them. They were about $35 a month. I can find out about them if you want me too.
My husband has been complaining again that he can't see. He has glaucoma, but it is supposedly under control. He also has cataracts.
Hope you get some help!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote:Originally posted by Lymetoo: Wow... very very sorry to hear all of the above!!! What a frightening thing to have your vision deteriorate so quickly.
There are some special OTC drops my Dr told my husband about but we didn't buy them. They were about $35 a month. I can find out about them if you want me too.
My husband has been complaining again that he can't see. He has glaucoma, but it is supposedly under control. He also has cataracts.
Hope you get some help!!!
Thank you, Lymetoo. Yes, it really is distressing, esp considering that most of these conditions can blind you! And if you need cataract surgery, that complicates the other conditions.
Sure, let me know what the eye drops are. The drops that the opthalmologist recommended are:
*acetyl carnosine eye drops (for cataracts, although they help other eye conditions, too)
*glutathione ascorbate---just found out today that they are an rx item compounded by compounding pharmacies
*Systane---this is for the dry eyes; it's OTC. Supposed to do them every 2 hours.
*Also supposed to use collidal silver eye drops 3 times per day
How the blazes I can do all of the above so many times daily, esp given that I can't see for a short while after putting in the drops . . . Not to mention trying to remember to do it all. Sometimes I set my cell phone alarm to go off every 2 hours to remind me.
Another eye dr wanted me not to use the colloidal silver or Systane, but only use Optive, Refresh, but since he's an optometrist and doesn't understand the infections, I'm jettisoning his recommendations.
Then, my neurologist and the optometrist wanted to have Restasis rx drops rx'd for me for the Sjogren's Dry eye. But I see that it is an immune-suppressant, so don't believe that that would be a good idea. Lord have mercy here!
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Rumigirl
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quote:Originally posted by Lymetoo: I like Systane. I use Soothe during the day and Systane eye ointment at night. I get a lot of mileage out of the ointment.
I plan to hold off on Restasis for as long as possible.
I didn't know about the ointment. I forgot that you have Sjogren's too, I think. Am I right? Ain't we got fun? NOT!
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Rumigirl
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Any other experiences or suggestions? Thank you, guys.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Wow - that's a lot of eye problems to be dealing with. May I say, that for anyone I've known who's had cataract surgery, afterwards they always say Why did I wait so long, since it does improve their vision.
However, in our case, as you mentioned mangosteen juice above, I suggest you give that a try. We're all different in how we respond, and my response to it was quick and amazing.
I went to the neuro-opthalmologist with floaters, light sensitivity, eye muscle pain and developing blurred vision. He gave me steroid drops, which I knew not to do re Lyme.
The next day, my chiropractor suggested I try mangosteen juice. Within one hour of starting to drink it, the eye muscle pain and blurred vision started to let up.
Within 24 hours, no more floaters and light sensitivity. Wow - I'd had these symptoms for well over two decades.
The 43 xanthone compounds in the ground-up rind of the mangosteen fruit combat inflammation.
My sinuses also emptied, as did my intestines, and my gums no longer bled.
I still drink a half ounce in the am and pm every day and it still keeps my eyes good and my intestines working like a baby's.
You can find the juice in healthfood stores and online.I like the mango-xan version because it has less sugar in it. The strongest version is Xango, found online, but I find it too strong for me - gives me a headache. So we all have to find what works for us, if it's going to work.
If you try the juice, let us know what happens.
Posts: 13116 | From San Francisco | Registered: May 2006
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Rumigirl
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Member # 15091
posted
any other feedback?
I go back to the opthalmologist on Tues.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Pychnogenol is something else to consider. My mom had what is called cotton wooll patches from extremely high blood pressure. After she took the pychnogenol and got her blood pressure under control those disappeared. Her eye doc said he had never seen anyone reverse that condition before.
Hubby took I think it was 300 mg of pychnogenol daily for several years (used the vitacost generic brand) and his vision actually improved to the point he had to get new eyeglasses with a new prescription which was not as strong. He did however have mild cataracts in both eyes.
I also think that both CoQ10 and vitamin C do cross the blood brain barrier and can help with oxidative and vision issues -- he took both of those as well.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
my husband has very bad eyes. floaters in both and now cataracts.
he had oneeye done and now has to have the other one done.
no need mentioning lyme,he won't listen.
i bought him ocuvite and so far he hasn't noticed anything.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I have had the severe dry eyes, epithelial changes, and vision changes, although no cataract or pressure problems.
It was one of my first symptoms and does come back to haunt me now and then. It was extremely bad last October to the point where I developed abrasions from the dryness.
I had rapidly deteriorating vision in one eye only at the end of 2010.
The MD I saw did some testing on the optic nerve and did find an issue, although he thought it was more due to me being nearsighted.
My symptoms do wax and wane. During the worst of times I seriously went and bought every brand of every product on the shelf. For me, I have always found Systane to be the most helpful.
I have done ABX drops and steroid drops and even colloidal silver. I do put in ointment every night. I have noticed recently that I am experiencing some dryness, although not to the horrible degree as before. Interestingly, this started about the time I started Amour. Well controlled so far.
I am so sorry you are dealing with this because I certainly understand the frustration and discomfort. It's like...the eyes? What next? Ugh.
Posts: 478 | From Third Coast | Registered: Feb 2011
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Rumigirl
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Thank you, koi. Was it mainly treatment that improved your eye situation?
Posts: 3771 | From around | Registered: Mar 2008
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Rumigirl, I have been thinking about this and honestly don't know. I will get the symptoms for weeks at a time and then they go away.
When I had severe dryness last October I was kind of surprised because lyme seemed to be very well under control. This was probably both the worst and longest episode, and then it just went away.
I don't think it is Sjogrens because only my eyes are affected. I honestly don't know what sets it off. My OPH thought perhaps an autoimmune process?
When the vision in the one eye deteriorated, it was rapidly. I would say within a four-month timeframe my vision in that eye went kaput. This was when I had a lot of bad lyme symptoms but not yet a dx.
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GretaM
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posted
I am having eye problems-especially with one eye. I can't even touch it-it feels like it is under so much pressure as to pop.
I will try the mangosteen jusice in the meantime, but could someone please forward me contact info for an LL opthamolagist?
I will travel.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Maybe you should post the question in Seeking.
I went to a neuro-opthalmologist who couldn't find anything wrong with my eyes even though he had to anesthetize my eyes for me to be able to look at light.
Next day, I tried the mangosteen juice, and all my eye symptoms cleared up in 24 hours!
It's an anti-inflammatory juice - many brands in healthfood stores and online. I like the Mango-Xan one as it's the most tart.
Posts: 13116 | From San Francisco | Registered: May 2006
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Catgirl
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Rumigirl, I am so sorry to hear this. I know you've tried parasite stuff, but try it again. It's the only thing that has helped my eyes. All of it has helped me (parasite meds), herbs, salt/c, etc). I could feel a spirochete drilling through my eyeball the other day. It's so unnerving when they do it. It was on the run though (I'm hitting them big time).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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GretaM
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Robin123-how much mangosteen juice should I drink per day? I just bought some but not sure how much I should take.
Thanks
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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poppy
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$40 for a liter of Mango-xan. Does that sound right?
Posts: 2888 | From USA | Registered: Mar 2004
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Just checked the liter/quart comparison - a liter is 33 ounces. So no, you're paying too much! I get a quart of mango-xan and it costs me all of $16 at the healthfood store! You can also order it online at around that price.
I drink around 3/4 oz in the am and pm.
When I first started it, got to admit I drank alot of it, with water. That cleared out my sinuses for 48 hours and my intestines for 72 hours, then in four days' time, my gums didn't bleed anymore. Just telling you that to let you know it can have other impacts!
Posts: 13116 | From San Francisco | Registered: May 2006
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GretaM
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Ouch! Mine cost $42 for a litre.
Ok, I will try an ounce every 12 hours...
I don't want any side effects... Haha
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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