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» LymeNet Flash » Questions and Discussion » Medical Questions » Has anyone else experienced uveitis?

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Author Topic: Has anyone else experienced uveitis?
ladyvreni
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This is my first post, so I'll try to be brief, yet descriptive. Had bilateral acute uveitis event in Nov. Multiple tests by several docs have revealed a positive EIA, but no banding for the IgG or IgM, so I'm classified as a false positive. I have Lyme antibodies, but I don't have a positive on the western blot.

Two months before the uveitis, I had been taking prednisone for joint pain. And 3 weeks before uveitis I had received two steroid shots for pain in my shoulder and arm.

The "cure" for the uveitis was....more steroids. I took prednisone tables and eyedrops for 6 weeks before the infammation calmed down.

Now I seem to be hyper sensitive to light in my eyes and them seem abnormally dry. I have a ton of other problems and symptoms too like most Lyme patients. But I'm trying to educate myself about Lyme's and I'm concerned about another uveitis episode and the treatment of taking more steroids.

Would love to know if anyone else has had uveitis and if they had experienced any other remedy for the inflammation in their eyes.

Thanks for reading my post.

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Keebler
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-
A positive IEA - is that ELISA? Did you have more than one positive ELISA? If so, that's pretty clear, since you also seem to have symptoms enough to warrant a test.

Where were the Western Blot IgG and IgM done? Not all labs do all the bands and many labs don't do the procedure correctly or on a sample that was sitting around in a lab over a long weekend, etc.

I just looked up IEA and can't tell if that is an ELISA but it is an antibody test. You said you had several positives. Well . . . with your symptoms that would scream positive to me. Rarely does an antibody test actually show positive.


========

Yes, it's very common for lyme patients to have all sorts of eye problems.

Can you see a good LLMD? (Lyme Literate MD who is ILADS-educated or an ILADS member?)

Beside lyme, there are other tick-borne infections - and other chronic stealth infections that most doctors are clueless about.

Steroids can make any infection worse but if you need it to save your sight that is, of course, a consideration. But, if you also have a missed infection, it could make it worse.

Most LLMDs will use steroids only as a last resort and then only with particular antibiotics at least 48 hours prior if possible and all through and way past steroid treatment.

I suggest contacting your local lyme support group to see if you can find a LLMD (lyme literate MD) who also knows about what other infections you should be tested for.

The fact that you were tested for lyme indicates that you have an array of symptoms. Do you recall EVER having a bulls eye rash? Not all lyme patients even remember a bit or a rash but, if one did show, that cuts down your homework considerably.

==================

www.ilads.org

ILADS

=================

www.igenex.com

IGENEX lab

==================

http://www.lymenet.org/SupportGroups/

Find your Support Group

==================

http://flash.lymenet.org/scripts/ultimatebb.cgi/forum/2?

Find a LLMD

=========================

Not specific at all to lyme but, in general. I also think there must be some other way besides steroids. I always think there are other ways.

http://tinyurl.com/dc9u8c (Through Amazon)

The Eye Care Revolution: Prevent and Reverse Common Vision Problems - by Robert Abel, Jr. M.D.

You can read customer reviews and look inside the book.

=====================


http://www.vrp.com/ArticlesCategory.aspx?k=Vision_Sight

32 articles on Vision and Sight

One of those:

http://www.vrp.com/articles.aspx?ProdID=art1068&zTYPE=2

Vision: Natural Ways to Maintain Eye Health - By Jim English

Excerpt:

. . .

A number of nutrients have been extensively studied for their ability to treat a wide variety of vision-related conditions by preventing the damage caused by free radical activity and by enhancing the delivery of blood and oxygen to the retina to help repair tissues

. . . .

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Keebler
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-
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Dr. Burrascano'sTreatment Guidelines (2008)

Excerpts:

P. 4:

. . . More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses.


This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids.

. . . .

From page 12:

. . . More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.


Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.


If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants. . . .

Page 20:

. . . and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example). . . .

====================

http://www.lymenet.de/literatur/steroids.htm

Antibiotics and Steroids

by John Drulle, M.

Excerpt:

. . . "Steroid Disaster" is a term coined by the pioneer of Lyme Treatment . . .

Corticosteroids are immune suppressants, the last thing a Lyme patient needs is to lower immunity.


Can you imagine, your body trying hard to fight off the spirochete bacteria and suddenly and immunosuppressants is introduced, "freezing" your immune system, rendering it unable to battle, giving great advantage now to the Lyme bacteria to spread and go wherever it wants .

Corticosteroids can last in the body for months, usually around 6 months. In many bacterial infections such as LD, damage can be done.

Many Lyme patients (such as myself) triggered LD with cortisone shots, pills, inhalers, etc. I can tell you, it is a nightmare I wouldn't wish on my worst enemy.

It is imperative to NEVER take corticosteroid for pain if you know you have a bacterial infection.

Some bacterial infections are so severe that a shot of cortisone could kill you, although that would be unlikely with Lyme, but rule of thumb, bacterial infections and immunosuppressants do not mix!

. . .

Dr. Burrascano makes it clear in his treatment guidelines that steroid treatment is detrimental, these are excerpts from his guidelines:

"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.


Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.


If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants.


The severity of the clinical illness is directly proportional to the spirochete load, the duration of infection, and the presence of co-infections. These factors also are proportional to the intensity and duration of treatment needed for recovery.


More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressants medications, and severe intercurrent illnesses.


This is why steroids and other immunosuppressants medications are absolutely contraindicated in Lyme. This also includes intra-articular steroids."

An easy explanation. Your immune system are the "soldiers" of your body constantly standing by to attack any foreign invader.


When an immunosuppressant is used, it is like killing off or knocking out most of your "soldiers", now your body is open to all foreign invasion and while your immune system is knocked out, those invaders can go anywhere, your heart, liver, brain - everywhere.

-

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ladyvreni
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Thank you Keebler for the information. Yes, I have a positive ELISA test. Multiple tests were sent to LapCorp and they always show the same result.

When I saw the Neurologist for the first time, he asked me if I knew how rare I was - Lyme disease with uveitis event? I guess I should have insisted on charging him a fee for giving him the opportunity to do a rare study!

Seriously though, I'm terrified of the possibility of another uveitis event. The risk of losing my eye sight vs. taking steroids to reduce the inflammation is not a position I want to be in.

I hope that if anyone else has had this event too that they will share their experience and treatments.

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Keebler
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It is not rare to have lyme and uvietis at all. What is rare is a positive Elisa and with multiple ones, any your symptoms, I hope you can get in to see a good ILADS-educated or ILADS-member LLMD now.

So, did the neurologist believe you had both or say (as many do) that it was a "false negative"? If he believed you, though, he was very wrong NOT to give you abx (antibiotics) along with the steroids.

Find a good LLLMD. If there is not one near you, see if you can find one where you have a friend or family member (who will not judge you) where you could say a night or two.

The uveitis can actually be the lyme infection itself. I am furious that, with multiple positive Elisas, you did not receive treatment for lyme but, instead, one that can make lyme even worse.

Of course, if steroids help save your eye, that is to be considered and you always go for saving the eyesight. But IF from lyme, at some point steroids will stop working. It this is a commonly repeated uveitis, you also need someone who can get to the REASON for the eye problem, your other symptoms as lyme seems highly likely with repeating positive Elisas.

Good luck.

-

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Keebler
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I'm sure there are many articles out there about uvietis and lyme.

Here's a start:

http://flash.lymenet.org/scripts/ultimatebb.cgi/ubb/search/search_forum/1

To search past threads here at LymeNet for certain topics such as Uveitis

=====================

http://www.ncbi.nlm.nih.gov/sites/entrez

PubMed Search:

uveitis, lyme - 96 abstracts

Just one of the 96:

Med Mal Infect. 2007 Dec;37 Suppl 3:S175-88. Epub 2007 Dec 11.
[What kind of clinical, epidemiological, and biological data is essential for the diagnosis of Lyme borreliosis? Dermatological and ophtalmological courses of Lyme borreliosis]
[Article in French]
Boy T.

Lyme borreliosis (BL) is a multisystem infectious tick-transmitted disease. . . .

Ocular manifestations are rare events occurring during every stage of the disease. A wide spectrum of presentations is possible (uveitis and optic neuritis).

BL (Lyme borreliosis) is responsible for ocular infection or inflammation. A neurological presentation is often associated with the ocular manifestation. . . .

Be sure to see all the other abstracts and then if any are different from a search for:

uveitis, borrelia - 58 abstracts

Of those:

#5: [Eye involvement of borrelia aetiology]

We present a case of eye involvement -- intermediate uveitis -- during tick-borne borreliosis in a 10-year-old boy. . . . The boy was treated with intravenous ceftriaxone for 21 days.

==========

Not lyme, but a different borrelia:

#7: www.ncbi.nlm.nih.gov/pubmed/16876531

Borrelia hermsii causing relapsing Fever and uveitis.

Am J Ophthalmol. 2006 Aug;142(2):348-9.

Excerpts:

METHODS: A 12-year-old boy with two weeks of relapsing fevers 10 days after camping in remote eastern Oregon was examined.

Borrelia hermsii immunoglobulin M and G levels were markedly elevated. Intravenous ceftriaxone, followed by four weeks of oral cephuroxime was administered, but the patient developed unilateral floaters and blurred vision in association with anterior and intermediate uveitis.

RESULTS: Doxycycline was administered for presumed residual infection. Four weeks later, the visual acuity had improved. The anterior chamber was quiet, and topical corticosteroid was tapered [off] successfully.

CONCLUSION: Although rare, Borrelia hermsii should be included in the list of spirochetal diseases that are associated with uveitis.

-

[ 02-11-2010, 05:09 PM: Message edited by: Keebler ]

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Keebler
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From Search at www.lymeinfo.net (you'll want to go back to this as a search engine so safe the link):

---------------

www.lymeinfo.net/medical/LDSeronegativity.pdf

[PDF] Seronegativity in Lyme borreliosis and Other Spirochetal Infections

"RESULTS: Only four of six uveitis patients suspected for Lyme borreliosis were ELISA positive, while all six subjects showed a . . . .


=========================

www.lymeinfo.net/medical/LDSymptoms.pdf

Lyme Disease Symptoms


. . . (2) The etiology of uveitis: the role of infections with special ..... children with arthritis and uveitis.'' Lyme disease simulating septic arthritis. . . .

=======================


Do a search at Google for: uveitis, borrelia - 74,800 results

Google search for: uveitis, lyme - 641,000 results

One of those:

http://www.canlyme.com/uveitis.html

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1540569&dispmax=100&dopt=Abstract

Intermediate uveitis and Lyme borreliosis.

Breeveld J, Rothova A, Kuiper H.
Department of Ophthalmology, Academic Medical Centre, Amsterdam, The Netherlands.

Br J Ophthalmol. 1992 Mar;76(3):181-2.


A case of chronic intermediate uveitis and associated classic snowbanking (pars planitis) with severe cystoid macular oedema probably due to Lyme borreliosis is reported.

Excerpt:

Despite a disease duration of 10 years the patient's ocular symptoms and visual acuity responded promptly to intravenous ceftriaxone treatment. This case demonstrates that periodic reevaluation of patients with intermediate uveitis is necessary to obtain a specific diagnosis which may include Lyme borreliosis.

The etiology of uveitis: the role of infections with special reference to Lyme borreliosis.

. . .

CONCLUSION: Infections are an important cause of uveitis in a university clinic.

(written in 1992) Lyme borreliosis is a newly recognised uveitis entity which should be kept in mind in the differential diagnosis of intermediate or posterior uveitis in areas endemic for Lyme borreliosis.

-

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Keebler
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Now, for your file research and reference notes: a bunch of stuff about lyme. Be sure to take many mental health breaks to something totally unrelated to health as often as you feel the need.

This can be intense. Sorry for piling on so much. I just want to be sure you have the basics. And, believe me, as long as this post will be, these ARE still just the basics. I hope you can find a good LLMD to guide you.

As for treatment protocols, I've posted several for you to consider - but each LLMD has his/her own according the each patient's case and needs.

It's just that each of the ones listed below has some specific information for a well-rounded view. Most consider FIRST the work of Burrancanso, especially his self-care guidelines and supplements, etc. From there, you have many to compare and contrast for a better understanding.

I've also included several of the good complementary protocols by authors whom are ILADS-educated (in that they are familiar with all the research of ILADS' authors and are very Lyme Literate even if they take a different approach, they have considered all the aspects.

If a doctor is not ILADS-educated, they will not have a full understanding of the complexities involved.

Now, please take excellent care and the very best of luck to you. Hope you have some nice music on while reading. I'm sending some hugs. This will become clearer, easier and, hopefully, just a blip on the screen.

================
================

http://cassia.org/essay.htm

When to Suspect Lyme - by John D. Bleiweiss, M.D.

=====================

www.lymeinfo.net/medical/LDSymptoms.pdf

Lyme Disease Symptoms

===============

www.ilads.org

ILADS

================

http://www.ilads.org/lyme_research/lyme_articles4.html

LYME DISEASE; TWO STANDARDS OF CARE
by Lorraine Johnson, JD (revised 2005)

=================


This explains WHY you need an ILADS-educated or ILADS-member LLMD:

www.clinicaladvisor.com/Controversy-continues-to-fuel-the-Lyme-War/article/117160/

From the May 2007 issue of Clinical Advisor

CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - By Virginia Savely, RN, FNP-C May 18, 2007

As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.

Excerpts:

Meet the players

The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)

and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )


IDSA maintains that Lyme disease is relatively rare, overdiagnosed, difficult to contract, easy to diagnose through blood testing, and straightforward to treat ( www.journals.uchicago.edu/CID/journal/issues/v43n9/40897/40897.html - Accessed April 6, 2007).


ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)

especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).

. . .

" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."


`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.


"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."


. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.


- Full article at link above, containing MUCH more detailed information.

---------------
[Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.]

==========================

This is want you want to avoid from happening:

www.jneuroinflammation.com/content/5/1/40

Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis


===========================

This article has much attention on both lyme and Cpn:

http://tinyurl.com/preview.php?num=64y3rv

(then clink "PROCEED TO THIS SITE")

May 2008 Volume 39 Number 5 LABMEDICINE
www.labmedicine.com - American Society for Clinical Pathology

CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES

- by Garth Nicolson, Ph.D.

==========================


TESTING

You don't need another test for lyme. However, you should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:

www.igenex.com

IGENEX

------------

There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know.

=============================

Dr C's Western Blot explanation is discussed here:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=042077

For citation to original author, contact the person who posted the thread.

=======================

TREATMENT

www.ilads.org

ILADS

The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.


links to treatment: http://www.ilads.org/lyme_disease/treatment_guidelines.html


and

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Dr. Burrascano'sTreatment Guidelines (2008) - 37 pages

----

http://www.lymepa.org/html/dr__j__burrascano_september_20_15.html


Burrascano's Powerpoint presentation 9-20-08

-------

This is included in Burrascano's Guidelines, but you may want to be able to refer to it separately, too:

http://www.lymepa.org/Nutritional_Supplements.pdf

Nutritional Supplements in Disseminated Lyme Disease

J.J. Burrascano, Jr., MD (2008)

Four pages

====================

http://www.klinghardtneurobiology.com/LymeProtocolOct09.pdf

A Treatment Guide: Lyme and other Chronic Infections

by Dietrich Klinghardt, MD, PhD

October 2009 - 87 pages

====================

http://www.lymeinducedautism.com/images/Lymewhat_is_it_part_3,_LIA.pdf


LYME DISEASE Considerations in Diagnosis and Management

June 26, 2008 Lyme-autism Connection Conference

Steven Harris, MD

125 pages - Powerpoint presentation

========================

This book, by an ILADS member LLMD, holds great information about treatments options and support measures:


http://tinyurl.com/6lq3pb (through Amazon)


THE LYME DISEASE SOLUTION (2008)

- by Kenneth B. Singleton , MD; James A. Duke. Ph.D. (Foreword)

You can read more about it here and see customer reviews.

Web site: www.lymedoctor.com

=========================

http://tinyurl.com/5vnsjg

Book: Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections - by Stephen Harrod Buhner

website: http://planetthrive.com/2009/08/buhner-healing-lyme-program/

-----

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/86857

Topic: Buhner Healing Lyme Q & A links have changed

=================================


http://tinyurl.com/5drx94

Lyme Disease and Modern Chinese Medicine - by Dr. QingCai Zhang, MD & Yale Zhang

web site: try www.sinomedresearch.org and use "clinic" and then "clinic" for the passwords or call Hepapro through www.hepapro.com

=================

www.lyme-disease-research-database.com/lymenutritionfile1_files/Integrated-Approach-DAN.pdf

HEALING LYME DISEASE: An Integrated Approach to Curing Chronic Infection

Daniel A. Kinderlehrer, M.D. (2004)

============================

This author is also an ILADS member & a LL ND author:

http://www.dancingviolets.com/media/pdf/LymeDisease.pdf

Chronic Lyme Disease and Co-infections: Clinical Overview (Snow)


======================

Similar approach, from another ILADS-member/ND author:

http://www.steveclarknd.com/LymeDisease.htm

Your Path to Wellness (Clark)

========================

RIFE:

http://www.lymebook.com/lyme-disease-rife-machines-bryan-rosner

Book: Lyme Disease and Rife Machines by Bryan Rosner

==================

http://tinyurl.com/5crsjv

CURE UNKNOWN: Inside the Lyme Epidemic (2008) - by Pamela Weintraub

This details what an entire family went through. Having this knowledge of their journey will help others to get better, faster treatment.

http://www.cureunknown.com

==========================

http://www.underourskin.com

Documentary: UNDER OUR SKIN

DVD is $40. and worth every penny. It explains a lot about the politics hitting patients as they seek adequate treatment.

=======================

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=020605


MAKING THE MOST OF YOUR LLMD VISIT


From Melanie Reber

===================

In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=069911#000000

TIMACA #6911 posted 03 August, 2008

I would encourage EVERY person who has received a lyme diagnosis to get the following tests.

- at link.

====================

http://www.lymedisease.org/news/lymepolicywonk/115.html

The Association of American Physicians and Surgeons (AAPS) takes IDSA to task

====================

http://www.lymedisease.org/news/lymepolicywonk/117.html

Germany Says No to IDSA Lyme Guidelines

-

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Keebler
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-
Now, after that whirlwind. I wonder if you have a good nutrition store nearby if you might consider picking up a good brand of Olive Leaf Extract &/or Allicin (if your stomach can handle a garlic extract - and take with food at first).

OLE should not cause stomach upset.

You can search those for background if you like but I suggest simply as some attempt to cover your bases. OLE has good research behind it and might help you in this in-between time.

Once you contact a LLMD for an appointment be sure to tell them about your eyes and the steroid treatments. Then ask what they suggest in the meantime until you can get into see them or who they might suggest closer to you.

AND - most important - ask the LLMD you find about a LL eye specialist whom they would highly recommend. Perhaps you could get into the LL eye specialist sooner.

You might ask someone very soon about "Colloidal Silver" "Eye drops"

You can do a search at Google and find out a little more but it's best to have a LLMD direct you to certain eye drops that you can be sure about their safety - just was just a thought.

=================

PubMed Search: Uveitis, Colloidal +silver - zero

A Google search brings up some results (but you'd want to confirm details and source): Uveitis, Colloidal +silver

Also search: colloidal gold

-

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Keebler
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-
Why I suggest OLIVE LEAF EXTRACT right now and the brand that works best for me.

www.amazon.com/Olive-Leaf-Extract-Morton-Walker/dp/1575662264/ref=sr_1_1?ie=UTF8&s=books&qid=1265402342&sr=1-1

Olive Leaf Extract by Dr. Morton Walker

=============================

http://www.vrp.com/ArticlesSearch.aspx?k=Olive_Leaf_Extract

Many articles on Olive Leaf Extract

====================

http://www.ncbi.nlm.nih.gov/sites/entrez

PubMed Search:

Olive Leaf Extract - 72 abstracts

Also search:

Andrographis (as in Buhner's book above) -

Allicin or Garlic (as in Zhang's book above) -

============================

http://www.cogito.org/Articles/ArticleDetail.aspx?ContentID=15951

Biofilm . . . Terminalia chebula . . .

=====================

Olive Leaf formula:

My ND (naturopathic doctor) recommended MYROLEA B. Most naturopathic doctors and acupuncturists know about the Seven Forest formulas.

==================

http://www.acuatlanta.net/myroleab-tablets-p-22018.html

Manufacturer: White Tiger

Name: Myrolea-B

Myrolea-B is also known as: Olive leaf extract with Chinese herbs

==================

http://chineseherbs.net/article_info-articles_id-2.html

===================

http://www.itmonline.org/arts/flu.htm

Myrolea-B (White Tiger) is a simple formulation of highly concentrated extracts from four Chinese herbs and one Western herb.


The Chinese herbs include forsythia and lonicera, two of the key ingredients of Ilex 15 (and the main antiviral ingredients of Yin Qiao Jie Du Pian), thus boosting the dosage of these essential ingredients.


Myrolea-B also contains the antiviral agents scute (huangqin) and terminalia (hezi). The Western herb in this formulation is olive leaf, which is one of the primary anti-viral herbs derived from the European tradition.


=================

A history of this formula:

http://www.itmonline.org/arts/shuang.htm


SHUANGHUANGLIAN: Potent Anti-Infection Combination of Lonicera, Forsythia, and Scute - by Subhuti Dharmananda, Ph.D., Director, Institute for Traditional Medicine - 2003


Shuanghuanglian (SHL for short) is a modern formula that was devised in the 1960s to treat a variety of infections. It is comprised of the alcohol-water extracts of three herbs: lonicera (shuanghua, often called jinyinhua), scute (huangqin), and forsythia (lianqiao). . . .


. . . One of the early preparations of the SHL was a tablet made of equal proportions of the extracts of each herb. This was used to treat leptospirosis, a disorder caused by a spirochete bacteria, related to the organism that causes Lyme disease.


Leptospirosis causes initial symptoms of fever and chills, headache, and muscle ache (especially in the shoulders); these are consistent with "flu-like" symptoms described for the onset of many acute infections.


In a 1971 report, the formula was described as being made in 500 mg tablets derived from 3.7 grams of the crude herbs, and being administered in doses of 10-15 tablets (thus, equivalent to the extract of 37-55 grams of herbs) every 6 hours (1), a very high dosage.


. . . Recently, Shuanghuanglian has been applied successfully to treatment of Coxsackie B3,


. . . The general indications for SHL . . . are "relieving the exterior syndrome, clearing away heat and toxic material," and its indications are "treatment of fever, cough, and sore throat that arise from wind-heat syndrome."


It is said to have "a good action in treating upper respiratory tract infection, tonsillitis, laryngopharyngitis, pneumonia, acute enteritis, viral dysentery, etc., when caused by virus or bacterial infection."

- full article at link above.

=======================

I still can't believe that no MD along the way took all those positive Elisa tests seriously, especially, as you had other symptoms that point to lyme. But it happens all the time and that is why I try so hard to help correct this.

Now, an important note to clarify: I am not a doctor nor any type of healthcare professional. Just a patient who was denied care for many years and had to figure out a lot on my own. I've also consulted with may good naturopathic physicians (only one who really knew about lyme, though).

OLE will is not intended as a cure for lyme but it MAY help until you can find the care you need. I think Allicin is a better choice - or one to add - but it can cause stomach irritation and I don't know your stomach. You do. Proceed with your good wisdom.

Andrographis is also a top contender. Whatever you choose, be sure to first read ALL about it from many good sources.

The Burrascano Nutritional Supplement link will help with other support methods until you find your LLMD:

http://www.lymepa.org/Nutritional_Supplements.pdf

Nutritional Supplements in Disseminated Lyme Disease
-

[ 02-11-2010, 04:35 PM: Message edited by: Keebler ]

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Robin123
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Hi and welcome - I ended all my eye inflammation symptoms when I started drinking mangosteen juice, an anti-inflammatory antioxidant juice.

I drink the Ultra brand with 70 minerals added, and there are lots of versions sold. If you try it, go slowly and drink a lot of water.

We have had discussion threads on the topic. You can click on the Search box at the top and type in mangosteen to read what everyone has said about it.

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ladyvreni
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Wow! I have to admit all of this information is great, even if it is daunting to sift through.

I have an appt with my ID MD in 10 days. I plan to have a lot of questions for him. Also plan to get some testing done with the Igenex lab.

Also see the Neurologist again in two weeks and will have a lot of questions for him too.

The nearest LLMD is a 4 hour drive from me, but if it's necessary, I'll do the drive.

I stopped using steroid based meds a week ago. Before the uveitis my symptoms were: joint pain, muscle pain, migraines, extreme fatigue, insomnia, severe types of a painful electric sensation in my hands, arms and legs.

After the uveitis new symptoms began: tremors, decreased clarity in my near-sighted vision, double vision, having difficulty raising my right arm, tennitis, reduced hearing ability in my right ear, remitting sore throat and sinus problems.

Thank you all for your information and consideration of my illness, I greatly appreciate it.

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Keebler
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-
Your ID MD will likely dismiss lyme. Seriously. He already has by dismissing numerous positive ELISAS and all the symptoms that are hallmark for advanced lyme.

The neurologist, too, will just further dismiss the idea.

Had these doctors been wise enough they would have guided you differently by now.

Please, somehow, find a doctor who is educated enough for you to bet your life on that experience and knowledge.

Believe me, most doctors don't care at all about finding the truth aobut lyme. There is a great deal of ignorance (not meant as an insult but as a descriptive - a fact as in they do not know even the basics) - and they are also so against the notion of chronic lyme that they really don't care to learn more.

Many don't even realize they've been caught up on a political power struggle and are puppets of the IDSA, insurance companies and pharmaceutical companies that would rather have patients on drugs for life that only covered up the symptoms, rather than get to the cause and treat it.

If you want a good life, find a better doctor. It is necessary, indeed.

You also need to be aware that the instant you start asking "lyme questions" of your current doctors, your file will likely be flagged as being a hypochondriac and you may never receive respect from them - or any other doctor who sees your file in the future. This is not an overstatement. It happens all the time.

If you show emotion in any way - even as understandable sadness and pain from your situation - you will be labeled depressed. If you express even a degree of energy in your persistence in wanting to get to the bottom of this, you will be labeled bipolar. You will be told to take antidepressants and find a hobby.

But, even if exhausted and in pain, if you are composed and strong of spirit as list your symptoms, you will then be labeled as faking it. So, however you present yourself, it is a minefield.

If you question your doctors' abilities, you will be labeled a "difficult patient" - not at all the same as a patient with a difficult case but a clear red flag for all doctors ahead to avoid you.

Again, that happens all the time so be very careful and be prepared. I'm sorry to say, but many of us here have been crushed - hard - repeatedly but otherwise nice or smart doctors.

The fact that you find yourself where you are now is a clear message that your current doctors are not well enough educated for your needs - or for the safety of your life.

I am so sorry to be saying all this. I've been there. Thousands of lyme patients have been there - thousands still are. You would not continue to take your car to a mechanic who did not know enough to fix and then pay dearly for his failure - so why continue to pay a doctor who does not have the skill you require.

I know it's hard not having a LLMD close. As you mentioned one 4 hours away, might you be able to get in soon? Could a friend drive you and could you stay over night (or two nights) so it's not too hard on you? Believe me, the appointment will be taxing so you need to be rested for it and then rest again to make the trip back home.

I am concerned that you get the care you need and the care you deserve. There are too few doctors out there for all of us but you might have a chance.

Please find a true expert. Windows of opportunity are not very frequent with lyme so I hope you can call today and find a time soon to see the LLMD a few hours from you. (If you are certain that it is a good LLMD, aware of all the ILADS research, etc.)

Can you at least ask them about an LL eye specialist they would recommend?

Good luck.

============

Some hotels and motels - even B & B's offer discounts for medical travelers. The LLMDs office can also give you details on lodging that is more to the sensory needs of patients - as well as restaurants that serve healthful foods.

Who knows, maybe someone in that local support group has good details, too.
-

[ 02-12-2010, 03:48 PM: Message edited by: Keebler ]

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Keebler
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-
Oh, your ID doctor (and your neurologist) will likely want a lumbar puncture (spinal tap) if you pursue your talk of lyme.

NEVER agree to a spinal tap as it is not a good diagnostic tool for lyme. You have the clinical manifestations. You have several positive ELISA but it is not enough for IDSA doctors.

True, you still need a clinical evaluation by an ILADS LLMD but a spinal tap is not necessary as diagnostic work-up for lyme. (Even if the IDSA says so. They are very wrong on their requirement of that.)

IDSA ID doctors want a spinal tap, despite there being evidence that it is a very poor test for lyme. It can also be very painful and leave you debilitated for a week or two, with severe migraine. Mostly, it just puts money in their pocket and it will show nothing. But, for them, it's their ticket getting them out of lyme talk or treatment.

==============

http://www.ilads.org/search/search.php?zoom_query=lumbar+puncture&x=0&y=0

Search results for: lumbar puncture at the ILADS website (includes the IDSA guidelines for comparison)

------------------

http://www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

Summary of ILADS Guidelines

Excerpt:

. . . Lumbar puncture has also been disappointing as a diagnostic test to rule out concomitant central nervous system infection.

In Lyme disease, evaluation of cerebrospinal fluid is unreliable for a diagnosis of encephalopathy and neuropathy because of poor sensitivity.

For example, pleocytosis was present in only one of 27 patients (sensitivity 3%) and with only seven cells.

The antibody index was positive (>1) in only one of 27 patients (sensitivity 3%). An index is the ratio between Lyme ELISA antibodies in the spinal fluid and Lyme ELISA antibodies in the serum.

The proposed index of 1.3 would be expected to have even worse sensitivity.

. . . .

==========

A previous thread on this subject:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/78703

Topic: Lumbar Puncture to test for Lyme?
-

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LightAtTheEnd
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Forget the other doctors and drive to the LLMD, and you will save yourself a lot of grief, and get treated like a human being. Mine is 9 hrs. away, but entirely worth it.

The other docs have already caused you to get worse, with the steroids, and are now refusing to give you effective treatment in spite of your symptoms and positive tests.

It doesn't matter to your health whether they are well-intentioned or not. They are doing you harm.

I don't have specific experience to share with you, but I just want to give you some hope:

My impression is that Lyme symptoms can completely clear up when the Lyme and coinfections are properly treated--even sight and hearing problems.

--------------------
Don't forget to laugh! And when you're going through hell, keep going!

Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009.

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Need Lots of Help
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I have eye issues, lots of them, and they have gotten worse as the rest of my lyme symptoms get worse. My LLMD said I could only take steriods to save my life or my eye sight. So, I am taking steriod eye drops. I don't have a choice. The inflammation in my eyes has been so bad that I have swollen layers of cornea and I am scratching my cornea because of the rubbing, and I have been to the point that I can't see.

Please, like Keeb said, forget the ID doctor, they are idiots and don't believe in lyme, it has been said so many times on this sight and I had the same personal experience. I wasted 15 years and more money than I can calculate on different types of doctors.

Good luck to you.
Shalome

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lpkayak
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lady...look-this info is all good but what you need to do NOW is get a real llmd

your doc doesn;t know what he is doing and your future is at stake

after you get a good llmd taking care of you e]then you can educate yourself---but with positive elisas and sx and a doc saying ignorent things like that you just needo get to a good doc fast

--------------------
Lyme? Its complicated. Educate yourself.

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Keebler
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-
Liver support during treatment is also vital as porphyria can cause problems with the eyes. Many lyme patients have a sort of secondary porphyria that causes excess porphyrins which can damage cells.

Steroids can make porphyria much worse.

It's very complex but the basic thing to remember is to ALWAYS support the liver and never push it too much. More details here:

http://porphyriafacts.tripod.com/ocular.html

PORPHYRIA FACTS - OCULAR MANIFESTATIONS

Forty questions and answers

================================

www.porphyriafoundation.com

THE AMERICAN PORPHYRIA FOUNDATION

=======================

http://www.cpf-inc.ca/

CANADIAN ASSOCIATION FOR PORPHYRIA

=======================

http://www.cpnhelp.org/secondaryporphyria

SECONDARY PORPHYRIA: what you should know before starting a CAP (combined antibiotic protocol)

========================

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/87840?

Topic: Porphyria (discussion thread - as relating to lyme)

-

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ladyvreni
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I am stunned that there are so many chronicly ill patients out there, and yet, Lyme is such a misunderstood disease. It is truely stunning that such a potentially disabling disease is so easily dismissed by so many professionals in the health care industry.

I've been trying to read everything provided (thanks all!) and doing some of my own research. Plus, I need my family to understand the issues and implications of what we might be up against. If I have Lyme I'm going to need their help, support and love to get me thru this.

Came down with really sore throat and swollen lymph nodes in my neck on Thursday, saw my family MD and he rx'd Zithromax, 5 day treatment.

Since I want to get an Ingenx lab report, can anyone tell me if taking the antibotic Zithromax is going to skew a lab test? Should I wait a specified period of time before I get my blood drawn for the test?

Thanks

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Keebler
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-
Glad you are still with us. I tend to frighten people away with so many links. But I'm after truth and there is so much written about lyme to share.

Be sure to take probiotics at a time different from the Zith.

I'd also suggest liver support like Milk Thistle and if probiotics are not enough to ward off a systemic fungal infection from the zith, Olive Leaf Extract should be of great help with that.

I don't know about timing of the test but you an email or call Igenex with your question. They also only accept on certain days of the week. They will send you test kit and Fed Ex mailer that you'd leave with whoever draws your blood. But it has to be done early in the week or mid-week.

Just call after you've looked over their site. They are a great help:

www.igenex.com

IGENEX
-

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ladyvreni
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I'm not not half as frightened by reading the posts here as I am by another uveitis event!

But just to let all of you know, I came off the steroid eye drops because they were causing pressure to build up in my eyes (not good for the retina).

I am currently still using a non-steriod eye drop called Xybron. I had some concerns when I began using it because it contains sulfa and I have had allergic reactions to sulfas before, however, the sulfa content in it seems to be quite small and I am tolerating the Xybron. So if anyone else out there is fighting inflammation in their eyes, they might give the Xybron a try if their MD will prescribe it.

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