posted
I never have a day when my eyes don't bother me. NEVER. Distortion, double vision, now pain and horrible headaches. Some days are better than others. Some days are like today.
It literally hurts to see. It hurts to look at this computer screen. My eye feels like it wants to pop out of my head.
I just want someone to fix me. I've been to 3 ophthalmologists,had an MRI, told my LLMD about what's happening and nobody seems to know why or what to do about this.
I finally called my PCP last week because I was just in so much pain. She prescribed vicodin.
I'm seeing a neuro-ophth. in 3 weeks. More waiting, waiting, waiting and pain in the meantime.
Does anyone else have eye problems like this? I also have constant tinnitus and head pressure. Makes it a lot of fun to try to get to sleep. There's just no relief. Ever.
I feel like I only come here to whine and feel bad that I don't lend much in support. It's hard to just get on here and read, though. Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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posted
I have the same problems. My headaches get so bad that it feels as though my brain is 2 sizes too large for my skull, they last for a week or more at a time, light and sound sensitive. I have had ringing in my ears everyday for over 2 years. Reading a book is impossible.
My LLMD said he thinks the headaches are bartonella. All I know is that they suck! And I have vision problems too. One thing that I was told recently. My goddaughter gets migraines, and her teachers (she is 15) started giving her homework and handouts on colored paper. I guess trying to read black print on white paper sets off some migraines. I have not tried it yet, but plan on it.
I hope you get some answers soon. I think it is perfectly acceptable, and even necessary at times, to take narcotics for pain, as long as they are prescribed by a doctor, and as long as you make sure to only take them as directed. You HAVE to get relief sometimes. I am lucky that my LLMD is also a pain management specialist, so that is a big part of his treatment program. Its not going to be forever, just as long as I need it while I am treating the infections.
And to your statement that you only come to whine, but do not lend support, that is simply not true. Just posting about what you are going through is a tremendous help to others. This disease is so isolating, and I have had great comfort knowing that I am not the only one experiencing my personal hell. So by talking about what you are dealing with, you ARE helping others.
I hope you find relief soon!
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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Systemic enzymes will reduce the inflammation and pressure, and you'll feel so much better. You also should be on magnesium and fish oil, which work to reduce inflammation.
What supplements are you taking now?
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by searching4truth: My headaches get so bad... light and sound sensitive. I have had ringing in my ears everyday for over 2 years.
My goddaughter gets migraines...
Searching, sensitivity to light and sound are symptoms of low magnesium. As are headaches and migraines.
Lyme Disease causes low magnesium, as the bacteria live in our cells and use up magnesium for their own purposes.
In addition to supplementing magnesium, I found that fish oil also helps to reduce inflammation and headaches. But the thing that has made the biggest difference for me is systemic enzymes.
I think your god-daughter's problems will likely get worse as time goes on. I know mine did.
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Systemic enzymes..what kind and when do you take it?? Empty /with food/with other supps?/
Thank you
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
I saw a fancy opthalmologist too, for my eye problems, and their fancy tests could not find anything wrong, even though they had to anesthetize my eyes for me to be able to look at light.
Then my chiropractor told me to try mangosteen juice, and it worked! Keep in mind, though, that we're all different in terms of how we respond to treatments.
For me, drinking mangosteen juice, an anti-inflammatory antioxident juice stops all Lyme eye symptoms. My symptoms were light sensitivity, floaters, eye muscle pain and blurred vision. Within a day or two of starting the juice, all symptoms were gone!
The juice has 43 xanthone compounds that scarf up free radicals produced by all the inflammation. You can find brands of it in healthfood stores and online.
It can also do other things - my sinuses ran for 48 hours when I started the juice. My intestines emptied out for 72 hours. My gums didn't bleed after 96 hours (4 days).
I drink 1/2 oz in the am and pm now. It stops all eye symptoms, and keeps my intestines regular like a baby's.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Re tinnitus, one modality worked for mine - stopped the ear ringing for 6 hours, which was something, at least.
It's called a PEMF machine - pulsed electromagnetic frequency machine. Wr hold a white coil as it pulses e'm frequencies. It's supposed to boost our e'm energy.
Well, it works - it reduces pain, speeds up healing, gets people high, stopped the ear ringing for me.
I asked a top Lyme doctor about it, and he said it probably quiets down the nerves to the ears.
Physical therapists and chiropractors could have one of these machines.
Posts: 13171 | From San Francisco | Registered: May 2006
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
There is an excellent Lyme Literate opthalmologist in Westchester, NY. PM me if you want the info. When necessary, she will confer with your LLMD and make suggestions as to what is needed to help the eyes (in terms of Lyme treatment).
Also, it sounds like you should be checked for Intercranial Hypertension (not regular hypertension). Or given a trial of Diamox, which is one of the treatments for it. That could cause the symptoms you are experiencing.
Posts: 3792 | From around | Registered: Mar 2008
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posted
Rough night. Headache got really bad, but a little better today. Feel like I got beat up,though.
Thanks for the responses and suggestions.
I ordered mangosteen juice, overnighted. Will be here tomorrow.
I'm taking a lot of supplements. Vit C, fish oil, cats claw, japanese knotweed, tumeric, milk thistle, cod liver oil/butter oil blend, multivitamin, transfer factor, Immuplex, probiotics. I think that's everything. Plus 4 abx.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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I would try stephania tincture from Woodland Essence. Buhner recommends that specifically for eye issues.
I would also try pycnogenol (pine bark extract) supplements. One of the best antioxidants for the eyes. Hubby's vision has actually improved slightly in the last 3 years -- to the point he needed a less strong glasses prescription.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by seibertneurolyme: I would also try pycnogenol (pine bark extract) supplements. One of the best antioxidants for the eyes.
. Bea, thank you for that suggestion.
I took pycnogenol years ago, but stopped because it didn't seem to be doing anything, and was expensive. Maybe it's time to try it again.
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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