Kathy Boss
Frequent Contributor (1K+ posts)
Member # 3062
posted
Hello to all,
I have not been around for awhile and hope someone here maybe able to help once again.
Eye inflammation has become a big problem. I had a pic line using rocephen for 30 days because the doc I'm seeing now thought it might be Lyme again.
Everything went great for a week or so after the abx but then all of a sudden BAM!
It came back and with a vengeance, now both eyes are inflammed. These steriod eye drops are not good for the eyes using them like I have to 4 times a day either.
My doc really thinks the inflammation is due to Lyme. I have not felt like I have had Lyme for years.
Although I do believe something else is the culprit, I just have never been able to pin it down.
Has anyone else had this eye problem or can help with anything new that might help inflammation?
This has been my main problem since all of this began 2 years ago. I have chronic Uveitis of my left eye with tons of floaters and dryness and blurred vision.
My Optham just kept throwing steroid drops at it on and off which did very little to help. I only went along with it because I was on oral antibiotics all the time.
Anyway, I had been pushing for IV but there was really no hope of getting it in this country. I did IV for 3 weeks in Germany at the beginning and it, and it cleared everything right up only to relapse 2 weeks later. ( I didnt know about the Bart then and I did not get any follow up treatment)
You may have been having a herx on the ricephin. You may need longer IV treatment in conjunction with some other orals to address different forms of lyme and co-infections.
If I were you I would go easy on the steroids if you can. I have developed a cataract now from using them which really ****es my off, because I feel had they given me the appropriate IV treatment, then it would never have happened. I am only 28 and had perfect vision prior to all of this.
I saw an Optham here in Shanghai last week and she told me that IV may be needed as there are no blood vessels feeding the Vitrious so it is very hard for antibiotics to penetrate due to the slow metabolism. I dont know if this relates to you or not, but all of my inflammation is right in the centre of the Vitrious (Intermediate Uveitis). Everything else retina , optic nerve etc is untouched. I do get swollen eyelid from time to time.
Thanks to her recommendation she wrote a report to my LLMD in NY I am finally being put back on IV soon.
Are you seeing an LLMD? I think you should nip this in the bud now if you can. Treating Bart has not resolved my eye stuff either. You are lucky your eye doc recognises lyme can persist in the eye despite IV treatment.
Good luck. Its horrible. Your eyes are so precious.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
| IP: Logged |
Kathy Boss
Frequent Contributor (1K+ posts)
Member # 3062
posted
Thanks NMN,
Man, you just described my left eye to a T. Exactly!
The amount of floaters is the worst I have ever had. This has been popping up since last Dec. Almost a year ago.
One day the white of my eye turned bright red, tearing down my face, I could not take the light and with in hours wound up in the ER.
Of course I have gone thru all sorts of eye test and uveitis is all I'm told.
At least this new doc (I just moved to Fresno CA) know a little about Lyme because of Yosemite Forest he has seen Lyme and the effects on the eyes.
That is the only reason why I got the Pic line. he sent me immediatly over to an infectious disease doc that had it put in within 24 hours.
Years ago when I was at my worst with Lyme I couldn't take a childs dose of abx without herxing.
This was not bad though. I felt tired sometimes but I still worked 12 hours a day so I couldn't have been that bad.
I know what a herx is. I have had the mother of all herxs in Italy 5 years ago. I have always known somehing else was lurking around after that though.
I don't know if there is a good LLMD in my area. Dr. S is 4 hours from here but I hear he is not taking new patients.
Guess I'll check into that.
I was also re-tested for Lyme this last year and showed negative, but it was not the the same test i had years ago. I have had some friends tell me to get tested for Bart. guess I'll check and see where that canbe done as well.
I have had a rash for 6 years now that has never completly gone away. The best it responded to was a treatment that is no longer available.
What has been succesful for you with your eyes?
[ 25. November 2008, 12:25 AM: Message edited by: Kathy Boss ]
Posts: 1092 | From CA | Registered: Sep 2002
| IP: Logged |
Unfortunately IV is the only thing that really quietened everything right down. You see in my case I see the Uveitis as the inflammatory marker for what is a systemic lyme infection.
I tested positive for lyme and bart (Eliza) straight off the bat but have tested negative for lyme on 3 more attempts since including a western blot.
Tests are useless as you probably know.
Drops just dont effect the globe of the eye. This is why systemic treatment is the only thing that will help.
Light sensitivity comes hand in hand with the Uveitis, but it can also be a neurological symptom also. My light sensitivity rarely surfaces without some agraphobhia and CNS irritation.
Having said that I have heard of people clearing it with Oral doxy and other oral combos. These did not work for me. I was in touch with a woman who told me her husbands 9 year chronic Uveitic cleared up permanently with 400 mgs of doxy for 4 months.
You just don't know really. I use artelec preservative free eye drops and nothing else. I do far better on just antibiotics alone.
I hope to get back to you in a few months with better news. I won't stop treating until its gone for good.
I might add that I can see little worm tyoe bugs crawling around in my vision when i look at a bright backround. Completely seperate from the floaters I see living organisms.
They look like they are on a different level or something. hard to explain. I have to kind of zone out and their they are. It makes sense that I can see them as the location of the infection is right in my line of vision.
Very frustrating.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
| IP: Logged |
posted
Robin is right, steroids are not recommended for lyme but in certain cases it is necessary to avoid blindness is the inflammation is out of control. I would never do systemic steroids but local injection or drops can be helpful in conjunction with antibiotic "cover".
It sounds like you are in good hands with your Opthamologist, but I would be concerned about the steroid use if you are not on antibiotics.
Robin - I would be very interested to hear what your actual optical condition/diagnosis was prior to your Mangosteen cure?
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
| IP: Logged |
posted
I am going on IVIg I wonder i that'll help my eyes. I do have inflammation to beat the band..and was told not to get any kind of corrective surgery until whatever it is gets undercontrol...
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
| IP: Logged |
Kathy Boss
Frequent Contributor (1K+ posts)
Member # 3062
posted
Thank you all!
Yes, NMN I see those worm things too. When my vision was cleared for years I did not see them. When the floaters occured again a few here and there i went straight to the doc. I drew on a piece of paper what i could see. the doc at that time looked in mny eyes and did not see anything. not even inflammation. That was 2 years ago.
Now I see them all the time. they look like earthworms. I know steriods are not supposed to be used with Lyme but I am looking at blidness again.
I went thru this one time before and was given 3 weeks on my eyesight due to my systemic rash.
I am interested in the magosteen juice. i just tried drinking Mon A Vie and it was great stuff but it wound up making me to hyper, maybe I was using too much because it gives you energy.
I have heard of IVIG before, what exactly is it?
My rash looks extremly better after the IV rocephen. I wonder how long it stays in the system and if the rash being better means my eyes took a extra hit because fo die off?
Funny the rash looks better, the best it has looked since 2002 and my eyes are now worse than before the IV>
Posts: 1092 | From CA | Registered: Sep 2002
| IP: Logged |
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Floaters have been a main symptom for me as well even though a recent eye examine revealed the optic nerve and retina are OK. I do have some lattice degeneration though which apparently is not all that dangerous.
Floaters though!! They drive me nuts sometimes.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
MICRFILARIA WORMS were found in the ticks that Burgdorfer originally tested. They can cause RIVER BLINDNESS!!
Google it and you'll see what I am talking about. I saw/see the squigley wormy things also.
I have had a lot of microscopic parasites/worms come out of the corner of my eyes. Feels like what we think of as grit in the eyes.
I have examined these things under a magnifying glass and they are parasites.
I am on the sea salt/vit c protocol and it makes parasites and worms run. I would not ingnore this.,
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
| IP: Logged |
posted
God... mangosteen and Bionic 880 in the one thread. Here we go.
She has not tried everything else otherwise she would be well.
Its an auto immune disease as a result of direct infection of the eye for gods sake.
She needs in all probability further antibiotic therapy from an ILADS trained physician not a frickin two grand trip to meet the wizard of oz or a bottle of over priced fruit juice.
Kathy by all means do what you feel is best for you, but that is my opinion.
Here is a link to a very good article on lyme Uveitis that you might find helpful.
I would get regular eye checks and follow your opthamologists recommendations. He can work with your LLMD to work out the best course of treatment for you.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
| IP: Logged |
posted
Heres is a section you might find intresting:
Dr. Bodaghi: Early diagnosis and therapy of acute Borrelia infection restrict the extent of the lesions and prevent ocular and systemic late manifestations.
Seronegativity in subjects strongly suspected of having Lyme disease does not necessarily exclude the diagnosis.
Lyme uveitis usually responds well to intravenous and oral antibiotics, but lack of response has been described with all antibiotic regimens tested.
A standard therapy has yet to be established. Early, localized disease responds well to oral antibacterial therapy.
Patients with early disseminated disease and with neurologic findings and uveitis may require parenteral therapy. Doxycycline is the oral antibacterial of choice, while amoxicillin is an alternative that may be preferred in young children.
Due to its long half-life and once-daily dose administration, intravenous ceftriaxone has become the accepted standard for parenteral therapy.
Steroids should not be used without appropriate antibiotic cover. During Lyme arthritis, patients who received steroids prior to antibiotics seemed to require significantly more courses of antibiotic treatment and the time necessary for the disappearance of rheumatologic disorder was longer.
Lyme uveitis should be excluded as a possible cause of ocular inflammation prior to the administration of periocular, intraocular, or systemic steroids.
Long-term antibiotic therapy seems to be promising in severe cases of intermediate or posterior uveitis.
Steroids can control ocular inflammation when associated with an appropriate antibiotic regimen. As for other infectious uveitis, the use of immunosuppressive drugs is usually not indicated.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
| IP: Logged |
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Does uveitis manifest as floaters at all? Or is that another ball game?
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
| IP: Logged |
posted
Yes that is one way it can present. For me ...I just woke up one day and I had two big floaters in my left eye.
After 3 weeks this led to a visit to the hospital and it was dignosed there and then and i was admitted for a full "Uveitis screening" which envolved most infectious diseases.
A month later I get the result back and I am told I was positive for lyme disease through Eliza test.
I am told its an easily treated condition and I am sent to ID and given the 3 week doxy cure and sent on my way.
Came back telling them It made em much worse and I am diagnosed immediately without any examination of any kind with "post lyme disease syndrome" and shown the door.
The rest is history as they say.
I manage to get a copy my hospital file 3 months later. In there I also find a positive for Bart which they never told me about and never treated me for.
I would say to any of you with any eye symptoms to get a slit lamp test done regularly.
I also had a retinal detachment in my right eye found totally by accident during this time. They said it was not related but then again. who knows? It was repaired by laser there and then.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
| IP: Logged |
posted
Does anyone know what causes us to see floaters? I used to watch them too, before I treated with the mangosteen juice.
NMN, I had light sensitivity and floaters ever since getting Lymed. Then after I got dx'ed, I developed eye muscle pain.
It was when I started getting blurred vision - not a good thing - that I went to a neuro-opthalmologist. He did every test he could think of - had to anesthetize my eyes for me to be able to look at light.
And wouldn't you know it - he said I passed all the vision tests, and gave me steroids. Well, I knew better than to take steroid drops at this point, so my chiropractor the next day referred me to mangosteen juice, and it worked.
I had been taking clindamycin ever since I got dx'ed. It cleared up several Lyme symptoms but did nothing for the eyes. I am allergic to the rest of abx.
Hey, NMN, welcome to Bionic Mangosteen! And the Bionic Mangosteen 880 - that's for those of us who have drunk it 880 times, as I have by now. (One more )
Posts: 13117 | From San Francisco | Registered: May 2006
| IP: Logged |
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Noooo the Mangosteen is officially taboo.
My eye doc said that no one really knows if lyme disease causes floaters but he did say that it is possible.
Since my floaters started after I was infected with lyme, I think it's safe to say that lyme certainly contributes.
Like some of you have said, my floaters often resemble worms as they change orientation at times. However, no doctors, LLMD's included, have been impressed with this finding, and they say that it's just loose matter in the vitreous.
To me, they seem like more. Sometimes they almost seem as though they are huddling close to one another while at other times they are more singular...very odd to say the least, especially in light of my recent normal eye exam....
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
| IP: Logged |
posted
lymeorsomething - I did not mean the floaters resemble bugs. The moving worm like things I am seeing are on a different level to the floaters.
Floaters are floaters. I am seeing something similar to bugs in a petrie dish. I have no doubt what I am seeing is lyme spiros or similar.
I feel you can't get rid of lyme if you are not taking a strong enough antibiotic to pentrate the vitrious. They will just sit in these immune sites to avoid being killed.
This has been true in my case anyway. I will let you all know if the IV works as well as it did first time.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
| IP: Logged |
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
They certainly look like bunched spirochetes to me as well but I have had people tell me that it's not possible. But who knows....
I'd be interested in hearing if IV clears your floaters though. My Bicillin is not putting a dent in them...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
| IP: Logged |
posted
Yeah I got that told to me too but lets face it. It eye is an extremely complex organ and there is a hell of a lot more going on than opthamologists can see with there little toy.
The fact that loads of other lyme patients are seeing exactly what I am probably meas that we are actually seeing our culprits some how magnified on the lens of the eye.
Without sounding mental ....It is like I can see them in another dimension. The IV cleared it last time in 2 weeks. Lets hope a few months with combos can blast them for good.
I seem to remember Californialyme having terrible eye problems floaters, the works, and tinnitus like myself. She finally went on IV and after the 6th month both disappeared and never returned.
This symptom is ruining my life.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
| IP: Logged |
posted
I might add that Bart is still a problem for me so I will be continuing orals for that.
Has anyone heard of getting a vitrious sample tested via PCR to try identify the exact microbe? Can it be done by a Opthamologist ?
I will look into to this as a last resort.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
| IP: Logged |
bettyg
Unregistered
posted
hi kathy,
llmd last names are NOT to be posted on board.
please look at your 2nd note down .... HALF WAY down and edit it using PENCIL, 3rd box to right of your name, to open up subject line and text.
now go there and just show DR. S. DELETE rest of name; thanks so much! we get carried away and forget this at times.
you can mention drs. full names in PRIVATE MESSAGES only...
interesting post! so you are going to eye specialist who is familiary with LYME too...good! my best to you...
IP: Logged |
Kathy Boss
Frequent Contributor (1K+ posts)
Member # 3062
posted
glmlll, what is your sea salt and Vit C protocol?
NMN, you got a good laugh out of me.... I have seen the Wizard of OZ. It was a little more than 2 grand but worth every penny. It took me out of a wheel chair and saved my eyesight back then. And, has given me many years of life back that I almost lost my battle to.
I appreciate your response and some very good information. The article is awesome, I'm printing it and taking it to my eye doc and infectious doc.
What is a lit lamp test?
GiGi, so good to hear something has helped you guy's. These bug's and what is associated with them are very hard to keep under control. Which is what I have done for years, keeping things under control. I don't have any of the brain fog and that hit by a bus feeling like in the beginning but there is certainly something that has been lingering around for years.
A good friend has mentioned I need to be tested for Bart. What is the test called? I hope the infectious doc that ordered my pic will know about the test.
Betty........I made the eidt. Sorry Posts: 1092 | From CA | Registered: Sep 2002
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[bonk]](graemlins/bonk.gif)
![[Big Grin]](biggrin.gif)
And the Bionic Mangosteen 880 - that's for those of us who have drunk it 880 times, as I have by now. (One more 
![[group hug]](graemlins/grouphug.gif)
![[Frown]](frown.gif)
Printer-friendly view of this topic