ANYONE EVER HAD CHRONIC CONJUNCTIVITIS ???

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Postby Gulf Gypsy » Sun Aug 17, 2008 3:58 pm

Greetings,

I have had eye involvement in prior years but never to the extent that it has hit me this time.  I have seen 4 Ophthalmologists for opinions and treatment since early May - all to NO avail. My eyes are worse today than the day it started.

The last Ophthalmologist I saw stated that, he thought that the inflammation was coming from something wrong systemically.  He then advised me to see my Internist.

My Internist has no clue and has now referred me to an infectious disease doctor. I have to wait 2 months to even get an appointment with the infectious disease doc..  I have been in remission since 2004 and my eyes were the first sign of a return of my systemic disease. Eyes -  severe fatigue plus alot of SI joint inflammation, hip inflammation and spine pain.

Does anyone think this could be a HERX reaction, due to the fact that I started back on the Doxy several weeks ago ?  I am also waiting until October to see a new AP doc as mine retired years ago... So no help there either.....Has anyone ever had eye involvement (conjunctivitis) for this long period of time? Please note it seems NOT to be infectious as there is no discharge, just severe inflammation.

Any input will be appreciated.

Sincerely,

Jane
Jane - Single, DX: Seronegative Spondylitis/AS causing - 7 spine surgeries, Sjogrens, Addisons, Hypothyroidism. Positive by PCR for M.pneumoniae 2001. AP therapy (Doxy) since 2001 resulting in COMPLETE Remission 2004.

Serious relapse June 08' after sto
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Postby Maz » Sun Aug 17, 2008 6:40 pm

Hi Jane,

Only a suggestion, but have you had your thyroid tested lately, including thyroid auto-antibodies? See you have hypothyroidism in your sig...I'm no expert, but I think sometimes an imbalance in meds or two thyroid issues can be going on at once...Grave's being the one that can affect the eyes and cause lid swelling, tearing and conunctivits-like symptoms.

http://news.bbc.co.uk/1/hi/health/2595575.stm

Also, have you been tested for Sjogren's Syndrome? Sometimes these rheumatoid diseases run in packs.

Was also reading about viral conjunctivitis as well as a coinfection of Lyme (bartonella henselae?)...maybe possibilities to consider, too?

Could be a herx, if worsening occured after starting AP, but always a good idea to rule out other stuff, as well.

Hope you figure this out soon....must be very miserable for you. :crying:

Peace, Maz

Edit note: Sorry, overlooked you'd already been dx.d with Sjogrens.
RA/Lyme - ABX since 11/06
Personal Progress Thread: viewtopic.php?f=3&t=301
Current Abx Protocol:
Clarithromycin 500mg BID re-started 11/5/13 (dose increased to 500mg BID on 7/3/14
Compounded Liposomal Artemisinin ("Artemisinin Essentials") restarted 7/3/14, 2 caps twice daily, 5 days per week for 3 weeks each month with 7 days off
Ivermectin 2mg (rx compounded) daily, started 9/21/11
Various staple supps: Enhansa, NAC, ALA, Morinda Supreme, KriaXanthin, B Complex, Milk Thistle, Dessicated Adrenal, Adaptan-All, Probiotics, Systemic Enzymes, Vit D3, Magnesium Citrate, Sodium Ascorbate, ImmunoPro, Nrf2 Activator, Liposomal glutathione, compounded topical progesterone.
Intermittent supps: Chemet every third day, along with NAC and BioPure Chorella followed by BioActive Minerals day following oral chelation. Weekly Myer's Cocktails and Glutathione IV Pushes for detoxification. Tri-salts and Opticleanse GHI.
FIR Sauna and other detox methods as described in Personal Progress Thread.
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Postby Maz » Mon Aug 18, 2008 12:38 am

Hi Jane,

A wonderful, longtime member of the bulletin board saw your post and thought you might like to see the article (below), which is located on the main website under the Education/Articles tab. Dr Wirostko talks about mycoplasma-like organisms (MLO's) that he had found in the eyes of JRA patients. What I find to be a possible, interesting correlation is that Dr JB, a prominant Lyme physician, has made similar findings with the bartonella organism (a known coinfection of Lyme) and he calls these organisms Bartonella-like organisms (or BLO's)! Not saying this is what you have, of course, but either of these infections may be worth checking into...if only to rule out. ;) Dr Wirostko recommends the antibiotic, rifampin, in the case of MLO's and Dr JB recommends Levaquin in the case of BLO's. However, it's worth noting that there have been recent FDA reports of severe side-effects in some patients who take Levaquin, including tendon rupture.  

Peace, Maz  

 http://www.roadback.org/index.cfm/fuseaction/education.display/
display_id/125.html

[font=Arial]Mycoplasmas in JRA Eye Disease?[/font]

The late Dr. Wirostko was a researcher and practicing ophthalmologist at Columbia Presbyterian Medical Center in New Jersey, specializing in infectious eye disease. His research in this area spans 20 years.

Dr. Wirostko and colleagues had published extensively on their findings of mycoplasma-like organisms (MLOs) in ophthalmic disease, especially uveitis in JRA patients.

Inflammation of the ocular vascular coats frequently accompany the joint disease of JRA. Upon testing, Dr. Wirostko found a prevalence of vitreous mycoplasma-like organisms in the inflamed eye fluids. These MLOs are cell wall deficient, pleomorphic, and can easily be confused with viruses. The intraocular fluids containing the MLO structures produced chronic uveitis and a systemic chronic inflammatory disease resembling human collagen vascular disease in experimental animals.

The MLOs parasitize the leukocytes and endothelial cells, and they appear to play an important part in the induction of lesions associated with this inflam matory eye disease. This dysfunction may in fact be responsible for disease progression.

The pathologic lesion is characterized as a vasculitis with subsequent tissue lysis, lyinphoid infiltration and granuloma formation. These MLOs, like most mycoplasmas, are fastidious and cannot be cultured in the laboratory. They are lipid-rich, and contain a variety of cytotoxic substances including nucleases.

MLOs have been identified in the eye disease of Crohns disease, sarcoidosis and JRA as well as other forms of orbital inflammatory disease. MLOs are well known plant pathogens and human MLOs seem to be very similar.

There are many reasons to believe these MLOs are also involved in human idiopathic systemic inflammatory disease such as JRA. We have found rifampin to be efficaciotis in both animal and human disease, eliciting a more rapid response than the tetracyclines and erythromycin which are slower acting but also efficacious.

References:

Mycoplasma like Organisms and Ophthalmic Disease, E Wirosiko, LA Johnson, BM Wirosiko, RL Farris, Thins. Amer Op/it/i Soc., 9 i :85. i 99?. p. 85-98.
Juvenite Rheumatoid Anhriiis intlanimalory Eye
Disease Parasitizatmon at Ocuitar Lcukocytcs by
Molticute like Organisms, .1 o/ Rheuni, i 6:1 i ,i 989.
p t446-i453.
RA/Lyme - ABX since 11/06
Personal Progress Thread: viewtopic.php?f=3&t=301
Current Abx Protocol:
Clarithromycin 500mg BID re-started 11/5/13 (dose increased to 500mg BID on 7/3/14
Compounded Liposomal Artemisinin ("Artemisinin Essentials") restarted 7/3/14, 2 caps twice daily, 5 days per week for 3 weeks each month with 7 days off
Ivermectin 2mg (rx compounded) daily, started 9/21/11
Various staple supps: Enhansa, NAC, ALA, Morinda Supreme, KriaXanthin, B Complex, Milk Thistle, Dessicated Adrenal, Adaptan-All, Probiotics, Systemic Enzymes, Vit D3, Magnesium Citrate, Sodium Ascorbate, ImmunoPro, Nrf2 Activator, Liposomal glutathione, compounded topical progesterone.
Intermittent supps: Chemet every third day, along with NAC and BioPure Chorella followed by BioActive Minerals day following oral chelation. Weekly Myer's Cocktails and Glutathione IV Pushes for detoxification. Tri-salts and Opticleanse GHI.
FIR Sauna and other detox methods as described in Personal Progress Thread.
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Postby Gulf Gypsy » Mon Aug 18, 2008 2:02 am

Gee Maz,

 
Thanks for the thoughts and info.  As a matter of fact I had 1/2 of my thyroid removed this past March 6th, due to chronic thyroiditis, which resulted in a huge mass.... Thank GOD it was not cancerous.  I have been on Synthroid since the 80's.  My thyroid levels are fine.........By the way, thyroiditis is NOW being associated with mycoplasma infection.....This mass grew from the 80's until it was removed....

I am really freaked by this as NO ONE seem to have an answer.  I am going to have PCR testing this week for all mycos and some viruses.....  I actually think it is related to my old---  M PNEUMONIAE MYCO issue--- AKA:  ---  sero negative spondyloarthritis! The spondyloarthropathies are famous for eye involvement.  A.S., reactive arthritis and many of the spondyloarthropathies haves conjunctivitis and uveitis involvement.  What has me stumped is that my CRP is LOW!  

Not to mention I cannot find an AP DOC CLOSE TO ME.... The first appt. I can get is in October with an AP doc that is supposed to have some expeience.

Thanks for your response and help.


Hugs,

Jane

 

 
Jane - Single, DX: Seronegative Spondylitis/AS causing - 7 spine surgeries, Sjogrens, Addisons, Hypothyroidism. Positive by PCR for M.pneumoniae 2001. AP therapy (Doxy) since 2001 resulting in COMPLETE Remission 2004.

Serious relapse June 08' after sto
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Postby Gulf Gypsy » Mon Aug 18, 2008 2:05 am

Maz,

Miserable is NOT the word.  I  look like an old CRACK HEAD...LOL!!!!  this started in May while traveling...I will keep diggin UNTIL i have an answer.

 

Thanks Jane
Jane - Single, DX: Seronegative Spondylitis/AS causing - 7 spine surgeries, Sjogrens, Addisons, Hypothyroidism. Positive by PCR for M.pneumoniae 2001. AP therapy (Doxy) since 2001 resulting in COMPLETE Remission 2004.

Serious relapse June 08' after sto
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Postby Kim » Mon Aug 18, 2008 6:15 am

Jane,

I can sypmphatize, but can offer no solutions as I'm still trying to sort this out myself.  My eyes are constantly inflammed.  Two opthamologists have said I have Graves Disease, even though I am hypothyroid.  I've also been diagnosed with Sjogren's.  What I really think is behind it though is what Maz described -- a Bartonella like organism.  I've had multiple tick bites every year for the past 5 years and recently had a classic Bart rash surface (I'm guessing as a herx).  I also have a staph infection in my eyes to keep things really complicated.  Many of my tear ducts are blocked with small stones that I can feel.  Recently the opthamologist saw so much inflammation that he ordered an MRI of the orbits and brain, but that checked out OK, so we're getting nowhere.:headbang:

I've tried all kinds of drops for lubrication, including Restasis which didn't work for me, but I keep coming back to Refresh.  I keep a bottle in each bathroom and use throughout the day for relief.

Wish I could be more help......kim
SD, RA, MCTD, Hashimoto's, Osteoporosis, Sjogren's, Uveitis, Lyme dx 9/08, AP 8/05-3/08, MP 3/08-8/08, AP/Lyme protocol 9/08, 9/09-REMISSION.
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Postby Suzanne » Mon Aug 18, 2008 9:16 am

Gulf Gypsy,

My daughter had terrible eye discharge that was never explained.  Rheums and ID said it wasn't related to her JRA, peds thought it was allergic, ped opth tried drop after drop after drop.

Finally, erythomycin ointment worked.  When we went back to the ped opth, I mentioned the articles A Friend had posted and that the ointment could work for uveitis.  He said he had heard that, that it was supposed to work (like it wasn't a standard treatment, but he had heard of it being used).

I think it would be worth asking your opth to try it, since nothing else has helped up to this point.  After using all those different drops with no results, the ointment worked quickly for us.  Good luck!
Suzanne - mom of 11 yr. old daughter w/poly JIA; dx 4/05; AP 8/06; current meds 250 mg Zithromax M and F.
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Postby DragonSlayer » Mon Aug 18, 2008 10:04 am

Hi, Jane:

The conjunctivitis can be a terrible thing, but not as dangerous as iritis.

This results from the lack of fluid that constitutes the primary peripheral immune system--dry eye in Sjogren's, but more than this "anergy" which results in the inability to fight off the viruses and other pathogens.  The conjunctivitis associated with AS is infectious and viral so antibiotics cannot treat it.  It can be a result of candidiasis, which is a primary trigger for AS, also.  Since the ophthalmologist did not find iritis, keratoconjunctivitis, or episcleritis, you should be fine if you treat this soon.

Although I am happy for you that Minocin has been so effective, the eye issues are indicative that your AS is still active to some extent; certainly, it could be a Herx.

I make my own colloidal silver, and do not know whether the commercially prepared product is appropriate for use in the eyes, but this is what can eliminate the conjunctivitis, and it should also be taken internally to reduce the yeast populations.  Other things can help--plugs for the tear ducts and taking enough EFAs (11g daily, but especially borage seed oil, EVOliveOil, and salmon oil).  I have only had to treat myself once for persistent conjunctivitis, but never get this anymore, thanks to the AS diet.  The several bouts of iritis I had are incentive enough to keep me on this strict regimen; so strict that I do not normally require any antibiotics.

More advice it to at least reduce all flour products and soluble forms of starch (potatoes and corn) and avoid all fried foods.

Good luck with it,
John
AS-Ankylosing Spondylitis. Full and permanent remission from combination of total starch exclusion and antibiotics. 11 years near full remission out of 39 years total.
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Postby Gulf Gypsy » Tue Aug 19, 2008 1:13 am

Thank you all so much for your help and responses!!!!

Please note that I used erythromycian ointment for several weeks -  to no avail.  However, Dragon Slayer, who also has A.S. is correct.  All of the spondyloarthropathies have some form of eye involvement.

I found out today, I have progressed from conjunctivitis to uveitis, although NOT as severe as iritis - still it is not good.  My GP, is really trying to work with me and help me find out what myco or other pathogen is attacking my body - even though she is NOT an ABX doc, she understands the theory!  I was living in FL when diagnosed and she never treated me with ABX therapy - but she is prescribing anything I ask her for a this point.  THANK GOD!!!!

 After all of the blood work ups I have had recently - the only thing that was abnormal was IgG - for m. pneumoniae......AGAIN..... A killer myco...but an IgG test really means nothing, I will have to wait for the PCR tests to come back.

For many years, whenever I was ill with my systemic diseases ( and treated wrongly - NO ABX)  my CPR was very elevated.  My most recent blood work shows a NORMAL CRP and white count??????  Any thoughts?

My PRC testing kit arrived from NJ today, thus tomorrow I am going to have drawn 10 seperate PCR tests - all by real time.  I am a FIRM believer in knowing what pathogen I am dealing with - if posible!   IF it is a myco, bacteria, fungus, i.e. OR identifiable that I am dealing with--- then there is NO guess work for the proper ABX treatment.

I am spoiled after 4 years of TOTAL REMISSION, I suppose.

Since Barts was mentioned, I asked the GP to add that test also by PCR. 

DRAGON SLAYER - you are correct....  I also abide by  the NO STARCH diet, the only way to beat AS or any of the spondyloarthropathies!!!!!  Silver is a great idea. I have been in remission for so long, I forgot about silver..... That will kill anything, LOL!

Also, when I was tested (positive) for mycoplasma in 2001 - I was positive for Candida - systemic also ---- without even ONE SYMPTOM!  Therefore, I added that to the list of PCR tests for tomorrow.

I am not on Mino - rather Doxy, which I JUST STARTED BACK ON DOXY SEVERAL WEEKS AGO!

So, while I am waiting for an appointment with a (so called) experienced AP doctor' s appointment in October, I will have the PCR tests, take my Doxy and Clindy, continue to see an ophthalmologists and try the silver.....However, now that it is uveitis,  I do  need to use steroid drops to control the inflammation and protect my eyes.

Any more great ideas??? Keep them coming.  I am really down as I have been ill now for 3 months - without any answers or relief. The fatigue is worse than I ever remember.  I am down mentally and very sad that I EVER stopped my Doxy.   What a bad call by my old AP Doc ! Your replies have given me a lift!

I sincerely thank you all for your GREAT THOUGHTS!

Jane

 



 

 

 
Jane - Single, DX: Seronegative Spondylitis/AS causing - 7 spine surgeries, Sjogrens, Addisons, Hypothyroidism. Positive by PCR for M.pneumoniae 2001. AP therapy (Doxy) since 2001 resulting in COMPLETE Remission 2004.

Serious relapse June 08' after sto
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Postby Maz » Tue Aug 19, 2008 2:29 am

[user=638]Gulf Gypsy[/user] wrote:
Since Barts was mentioned, I asked the GP to add that test also by PCR. 



Jane, this is great you're getting such comprehensive testing and that you have the support from your doc! WOW! If you can pinpoint the infection through, it will definitely help in determining what type of antibiotic would be best to help you.

As regards to bartonella, you might be interested to listen to a quick 10 min video presentation by Dr RH at a Lyme Conference a few years back, where he talks about the "Symptoms of Disseminated Lyme Disease" and, specifically, bartonella having been connected with eye inflammation and uveitis.

http://www.ctlymedisease.org/videoclips.htm

While, of course, it could be any one of a multitude of infections that is the culprit in your case, this is one nasty little offender that is definitely worth following up on, as well.

As for CPR and white count...I can only share my experience as it relates to Lyme. Both of these have been elevated and come down in a waxing and waning type pattern since getting Lyme. Of course, WBC can be elevated due to inflammation, but is also a result of infection and, according to the RBF physician packet, an elevated WBC is indicative of a herx, distinguishing it from a flare. 

Peace, Maz
RA/Lyme - ABX since 11/06
Personal Progress Thread: viewtopic.php?f=3&t=301
Current Abx Protocol:
Clarithromycin 500mg BID re-started 11/5/13 (dose increased to 500mg BID on 7/3/14
Compounded Liposomal Artemisinin ("Artemisinin Essentials") restarted 7/3/14, 2 caps twice daily, 5 days per week for 3 weeks each month with 7 days off
Ivermectin 2mg (rx compounded) daily, started 9/21/11
Various staple supps: Enhansa, NAC, ALA, Morinda Supreme, KriaXanthin, B Complex, Milk Thistle, Dessicated Adrenal, Adaptan-All, Probiotics, Systemic Enzymes, Vit D3, Magnesium Citrate, Sodium Ascorbate, ImmunoPro, Nrf2 Activator, Liposomal glutathione, compounded topical progesterone.
Intermittent supps: Chemet every third day, along with NAC and BioPure Chorella followed by BioActive Minerals day following oral chelation. Weekly Myer's Cocktails and Glutathione IV Pushes for detoxification. Tri-salts and Opticleanse GHI.
FIR Sauna and other detox methods as described in Personal Progress Thread.
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