posted
In May, I was diagnosed with Uveitis (inflammation) in both eyes.
When I was told that Lyme is one of the main causes, I realized that there was a good chance that the 11 months of oral antibiotics I took 4 years ago didn't cure my Lyme disease.
I was then tested and had a negative Western Blot and a positive Elisa.
Now, I've seen an LLMD in New Jersey and he ordered a new round of tests with Igenix and another lab all of which were still negative except for the Elisa which was still positive.
So, the doc phoned in a prescription of Doxycycline for me and I saw him two weeks later.
He then told me to see a rheumatologist because my ANAs were elevated, gave me some refills for the Doxycycline and said to come back in 3 months.
He was not very communicative and I'm not sure he really understands Uveitis because I had to spell it for him the first time I mentioned it.
Unfortunately, he's the only LLMD in my area who's covered by my insurance and I can't afford to pay anyone out of pocket.
I have gone to a rheumatologist to make sure something else isn't causing the Uveitis and he ordered another round of tests but I'm pretty convinced it's Lyme at this point.
My concern is that 100mg of Doxycycline twice a day is not going to be sufficient to reach my eyes because I have read that you need to take 500mg to breach the blood brain barrier. Is this true?
I know that doctors who treat Lyme get hassled and I'm thinking they want to stay under the radar and this is why they are reluctant to dole out high doses of antibiotics.
Does anyone have any advice for me?
I'd also be interested to hear if anyone knows about the efficacy of Lomatium (especially on the eyes or neuro symptoms) which I started on Monday.
Posts: 17 | From Princeton, NJ | Registered: Jul 2009
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posted
I think the normal dose for lyme disease is 200 mg. twice a day. I started at 100 mg twice a day and when I felt like I could handle that, I moved up to the 200mg.
Did he test for co-infections?
I recently began having eye issues, and I have had lyme for 20 years. I wonder if it is lyme finally getting me down, or the medicines.
Good luck to you. Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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posted
Yes, he tested for co-infections and they were all negative.
What kind of eye problems are you having?
My uveitis has manifested itself as a LOT of floaters and blurry spots and basically junk in my vision.
I forgot to add that I'm seeing an ophthalmologist who specializes in uveitis and she has me taking:
-Pred Forte (corticosteroid drops) every 3 hours,
-Timolol to reduce the pressure in my eyes caused my the steroid drops, and
-Cyclogil to keep my pupils dilated (I can't remember exactly what the purpose of that is but something about protecting my irises from white blood cells flooding to the area. It seemed odd to me to have my pupils dilated 24 hours a day but I talked to someone at Wills Eye hospital who said that was standard treatment for uveitis)
So any information anyone has about any of that stuff would be appreciated as well.
I've read some posts saying that the drops aren't good for you (Doc already told me they will give me cataracts) but she says they are necessary to control the inflammation until the root cause has been taken care of.
Does anyone know of any additional or alternative stuff I could be doing for the inflammation or getting to the infection beyond the blood brain barrier?
This whole thing with my eyes is very frightening.
I thought Lyme disease was horrible 4-5 years ago when I had to be out of work for 6 months and experienced extreme fatigue, pain, brain fog and every other kind of problem you could imagine throughout my whole body
but getting into my eyes and threatening my vision is really, really NOT funny at all.
Posts: 17 | From Princeton, NJ | Registered: Jul 2009
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I've hd the vision issues too, despite being on Doxy. I think I wasn't on a high enough dose of Doxy either--100mg twice a day, plus Rifampin 600mg a day.
Now my LLMD switched me to Amoxyl 2000mg a day and kept me on Rifampin.
I have a lot of the same issues with my eyes--floaters, spots, flashing lights, blurred vision, etc. I saw several eye docs (optometrsits and opthamologists), and none of them had a clue.
I'm waiting to see if the new meds do anything for my eyes.
Good luck, and I agree about fearing for your eyesight!
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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