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02/20/2010 05:01 PM

Vision problems with Lyme

bogart

I have late stage Lyme Disease. I have numerous neurological symptoms that seemingly come and go. The most recent and troubling symptom is something wrong with my eyes. I thought I had Iritis or Irisitis (inflammation in the iris), however, I was shocked to hear the Opthamologist say I had no signs of that, but it appears I have glaucoma! I go in for more testing in 3 days, but wondering if anyone else has had any type of vision disturbance, specificially a diagnosis of Optical neuritis or glaucoma. Also, wondering if the dizziness, trouble focusing, vision symptoms subside once the Lyme is "under control?" Thanks
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02/20/2010 07:52 PM
kittiekat
 
Posts: 110
Member

Hi

yes yes yes....i have lyme since 9 years im in my thirties, got mine backpacking asia and biten by insect(tick?) in jungle....in 2008 vision probs started with floaters then they became black spots in my vision field then blurring but black floaters like mosquitoes constant in vision but blurring is intermittant so it come and goes mostly when reading small print like newpaper and worse at night like most neuro symptoms are nocturnal in nature...it comes and goes,....3 times i have had epsiodes where the lyme plays on the nervbe to the eye and the eye jumps in the eye socket so bad other people cna see it., my LLMD in NY says yes its the lynme, im on 4 grams per day rocephimIv and its not geting worse but it hasnt cleared either...

now pls consider this.....most lyme patients have other viruses activated by our weakened immune systems, some have EBV, others shingles, others CMV...CYTOMEGLOVIRUS...well 80 percent of worlds population has CMV but those with lyme hiv or hep ect whereby the immune system is reduced well.....if u have cmv it can explode and be very bad...i tested positive for CMV and it is the virus that makes patients with immune probs ie HIV patients loose their vision, I am not HIV positive but since we are immmune compromised with Lyme, makes sense the CMV can make us have vision probs too...my doc agreed both lyme and CMV affect vision....have u been tested with CMV tests? CMV is commonly activated by Lyme and it affects vision really bad.

hope this helps.


02/20/2010 08:47 PM
Bettyg
 
Posts: 32295
VIP Member
I'm an Advocate

welcome bo Smile

edited: forgot to ask, do you have a llmd, lyme literate md treating your lyme? if you do NOT, please post in the LLMD REQUEST FORUM; link found in my welcome below.

do you have a lyme literate eye specialist too who has worked with OTHER LYME PATIENTS SIGHT? if NOT, please put that in your llmd request too and please show YOUR STATE and largest/closest cities to you ok. hugs.

i suggest you do a SEARCH found in upper right hand corner for the other phrases you used after you stated you were diagnosed with glucoma.

many folks do have vision problems; i'll paste some links after my welcome letter to you ok. Smile

Welcome to MD JUNCTION!! I'm so glad you found us! You've come to the right place for education and support!

The following are some links that may be helpful to you:

Seeking a lyme literate md; start YOUR OWN POST on this new forum; do NOT just add it to the introduction post only.

http://www.mdjunction.com/forums/lyme-disease-support- forums/llmd-info/1181374-lyme-literate-md-requests#1181957

(applies ONLY to those who posted elsewhere already ok.  )

NEW FORUM, SEEKING LLMDS, the last forum

start a NEW DISCUSSION by clicking on that at bottom of the page, copy your text to the body of message as you posted above

read my detailed instructions in christine's 1st post explaining how to use this new forum; big thanks! Hugs; example below

subject show: 4 yr. old needs KIDS LLMD IN MD, VA, DC area

http://www.mdjunction.com/forums/lyme-disease-support- forums/llmd-info

Lyme Disease and Co-Infection Symptoms

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/318635-lyme-and-co-infections- symptoms

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/81386

Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" http://www.ilads.org/lyme_disease/treatment_guidelines.html

Pages 17-19 discuss Adult and Kids Treatments

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/Itemid=217/func=post

Dr. B's Supplement List

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

Making the most of your LLMD visit

http://flash.lymenet.org/scripts/ultimatebb.cgi? ubb=get_topic&f=1&t=020605#000005

Herxheimer “herx” side effects to antibiotics & supplements …. Symptoms, treatments, and more! 1.25.10

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/1186591-jarischherxheimer-reaction- symptomstreatment

Herxing Reactions:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/89322

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=041517

CHECK OUT THE “LYME FACTS” forum; lots of good, accurate info there for your lyme journey. 

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research

Suggestions for When You Need Treatment and Funds Are Low plus Financial Burdens post towards bottom; extremely detailed by Melanie Reber

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/22281

WHAT IS LYME DISEASE? as quoted by Dr. Burrascano

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/1123178-a-must-read-for-new- members#1124851

Link to Turn the Corner Foundation: Good info and contacts for finding a good LLMD. http://turnthecorner.org/lyme-disease-quick-facts.htm

LYME YAHOO GROUP BOARD FOR EACH STATE FOUND HERE!

People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.

The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately.

To find your state group, go to

http://health.groups.yahoo.com/group/statenamelyme

Type your state name and lyme as one word, like this -

http://health.groups.yahoo.com/group/newyorklyme

South Carolina is the only state that needs a hyphen between the statename

and lyme, e.g. http://health.groups.yahoo.com/group/southcarolina-lyme

This explains the MEDICAL “POLITICS” AROUND LYME and why you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):

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

You should also be evaluated for co-infections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing.

www.igenex.com; http://www.frylabs.com; http://www.clongen.com; http://focusdx.com

For the Igenex Western blot IgM and IgG blood test drawn on M, T, or Wed am. Check current $$!

Call 1-800.832.3200 for current prices.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/ 78648?#000003

They will also send you a free “test kit” with their required form, all the test vials, & box to ship it in with return postage!

Be sure to download Igenex's required form IF you haven't called for Igenex to send you THEIR test kids!

MD, DO, ND, AC, DC are all fine** must sign, date, and show diagnosis code on there why he's ordering the test.

Optional tests include: co-infection panel for your area of country and PCR whole blood

Igenex is pre-pay/out of network for most insurances. If you are on medicare, Igenex will file the paperwork & it's free to you.

Get copies of all of your special bloodwork.

Overseas instructions for sending to Igenex/Fry Labs (2-23-08)

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=063751

Dr C's Western Blot explanation is discussed here:

http://www.mdjunction.com/forums/lyme-disease-support- forums/tips/1092391-missouri-drcs-western-blot-explanations- of-nos#1093495

http://www.mdjunction.com/forums/lyme-disease-support- forums/tips/3683-igenex-calif-western-blot-igmigg-testing-

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. www.ilads.org

Call ILADS they are happy to refer to LLMd's around the country. Here is the contact link, scroll down beyond the email form for their phone number:

http://www.ilads.org/contact/contact_ilads.html

Under Our Skin Lyme Disease documentary www.lymediseasefilm.com

BRAIN IMAGING MRI & SPECT MS, LYME , COLUMBIA UNIV 07 http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=058128

BRAIN DIAGRAM PHOTOS/DEFINITIONS 9-07

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=058059

American Museum of Natural History 2 SLIDE SHOWS

http://www.amnh.org/sciencebulletins/index.php? sid=h.s.lyme_brain.20100125

when you get to the site go to upper right hand corner and type in LYME DISEASE hit enter and it brings you to this very well-done slide show on LYME disease!

it shows ”brain lesions” too. 1st one is DATED JAN. 25, 2010.

Betty, Minoucat, & Connie Mc's SSDI, SSI, & LTD DISABILITY RECOURCES FOR Disability, Insurance, Dealing with HMOs

http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/3118-bettygs-disability-info-25- pages

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/13935

Success Stories

http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/57269-post-your-success-story-here

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/15820

Distinct Pattern of Cognitive Impairment Noted in Study of Lyme Patients …..MUST READ!! EXPLAINS EVERYTHING !!

written by Marian Rissenberg PhD & Susan Chambers MD,

The Lyme Times, Vol. 20, Jan-Mar 1998, pp. 29-32

http://www.anapsid.org/cnd/diffdx/rissenberg.html

NEURO-COGNITIVE LYME DISEASE links from cheryl's site 1.10

http://www.lymeinfo.net/neuropsych.html

Porphyria (including KPU)

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

cardiac symptoms please read!

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/77325

TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links

http://flash.lymenet.org/scripts/ultimatebb.cgi? ubb=get_topic;f=1;t=065801

VESTIBULAR DISORDERS ASSOCIATION

www.vestibular.org

VESTIBULAR SYMPTOMS

http://www.vestibular.org/vestibular-disorders/symptoms.php

DIZZINESS - many details at this thread

http://www.mdjunction.com/forums/lyme-disease-support- forums/medicine-treatments/Itemid=217/func=post/do=reply

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/ 65801?

TREEPATROL'S New Member Learning links: this can wait! There are OVER 1,000 LINKS here but treepatrol has organized it as best as he could 

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/29917

NEED A LAUGH, READ HERE & ADD YOUR OWN

http://www.mdjunction.com/forums/lyme-disease-support- forums/lounge/1041725-looking-for-my-need-a-laugh-post- bettyg-started

you tubes, post your FUNNY or INSPIRATIONAL ones here 

http://www.mdjunction.com/forums/lyme-disease-support- forums/lounge/1114416-you-tubes-post-your- funnyinspirational-ones-here

Betty's suggested posting guidelines:

Many of members have neuro lyme, and it is hard to read long solid block text and be able to comprehend; example, me, 40 yrs. neuro chronic lyme, so we are able to comprehend and read. Then we can assist and guide you ok. 

please post in short paragraphs like you see below or look at a few other posts, but we neuro folks need them short.

2-3 sentences MAX and hit ENTER TWICE to doublespace between each paragraph. hugs

For easier reading, please edit your post. You can break up your longer paragraphs into smaller paragraphs. Please hit “enter” key twice after each paragraph, also.

Go to left hand corner and mark box to receive ‘all replies', and click edit send.

Thank you for posting in a manner that makes it easier for all to read and help others.

sorry, but i couldn't read all your post, could you break it up into 2-3 paragraphs for us neuros to be able to comprehend and read; then we can assist you more ok. Smile huge thanks ... hugs Kissing

****************************

Betty's ROLL CALL of MEMBERS WITH EXTREME SENSITIVITIVITIES TO LIGHTS, SOUNDS/NOISE, AND CHEMICAL SENSITIVITIES

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=046537#000000

EYE SENSITIVITIES & NOIR, no infrared sunglasses info., 2-28-06 updated YES, I have what you have! Are you on doxy too? That made my extreme eyes 200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board.

http://www.marshallprotocol.com/forum2/4.html detailed!

I ordered the NOIR sunglasses.

http://www.noir-medical.com/noir_amber.htm

You will need 2% amber and 10% amber ... Style no. 901 and 910.

1-800-521-9746 TOLL- FREE, ONE YEAR GUARANTEE!

mention you have lyme and marshall protocol, they will give you 10% off! I'm NOT on MProtocol, but mention it anyway. I was on their new board almost 12 months!

Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service? I'VE NOT had to return broken/scratched lenses!!

In fact, I have a terrible time where they drop to the floor, and 1 of bows will break off the connecting PLASTIC piece connecting to the lense itself. They just take the info over the phone from YOUR STATE'S REP!

I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be.

Driving daylight hours, be sure to wear DRIVING GLOVES and a LONG SLEEVE SHIRT/JACKET so you will NOT SUNBURN ! I got burnt bad on my 1st out of state trip to new LLMD in Minn.

I wear my darkest tinted RX sunglasses always with my NOIR wraparounds over them, and my floppy straw hat too; shields my face/side views

NOTE: Wearing sunglasses that BLOCK ULTRA VIOLET LIGHT, help to prevent CATARACTS.

DRUGS ASSOCIATED WITH LIGHT SENSITIVITY by Minoucat

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=048201

Eye Floaters and Spots 9-07

www.allaboutvision.com/conditions/spotsfloats.htm

http://www.eye-floaters.com/floaters-entopticphenomenon.php

EYE PROBLEMS …NOT ABLE TO SEE; Tincup, 7.20.09

I had inflammation and eye problems from Lyme... from which I was declared to be legally blind due to the damage caused. May I suggest?

Rather than waiting to do steroids for the inflammation from uveitis, etc... and ONLY because you can't find anyone right now...

This is what I did which worked VERY well for me... recommended by one of my docs.

Vitamin C

Wobenzyme- 3 per day

Querectin- as directed on bottle- max dose

Bromelain- as directed on bottle- max dose

Vitamin E- max dose recommended on bottle.

```````````````````````````````````````````````

I know.. that sounds too simple.. but it has wordked for me and others.

These supplements have anti-inflammatory properties and I was actually found to do better on them than the steroid drops they prescribed .. [doc thought I was doing the eye steroid drops when rechecking me several times].

My eyes cleared up faster than they would have on the steroid drops. I think I took this combo for about 6 weeks.

If I feel problems coming on... I start the protocol again.

I MUST say you need to check with a doctor before doing anything I am posting about... as I am NOT a doctor.

Hope this helps. tincup

***************************************

There is also something that is called "Scheerer's phenomenon" or "blue field entoptic phenomenon".

This is basically the ability to see white blood cells traveling through in the squiggly capillaries of your retinas... especially when looking at a blue light. (like the sky)

When a leukocyte travels through.. it makes a wiggling motion. The link below is very interesting and even has an impression of this phenomenon. "Scheerer's phenomenon"

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/77825

How lyme impacts the eyes - legit sources from Marnie, 2-22-09

http://www.pubmedcentral.nih.gov/articlerender.fcgi? artid=504579

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/ 76692?#000007

Originally posted by Rebekah 6.7.09

Hi. Newbie here.

I'm a very sick eye doc with Lyme, bartonella, and borelliosis.

Eye pressure up to 29 may be normal. Not a very good test for glaucoma.

Better to look for dammage to optic nerve (visual nerve) with dilated exam.

When in doubt, a threshold visual field test (painless but boring) can be done to detect early glaucoma.

Other reliable tests that can help pick up glaucoma include corneal pachymetry and gonioscopy.

I agree that optic neuritis is a much greater concern with Lyme than glaucoma, but of course the possibility of glaucoma still exists in everyone.

If you're quite concerned about glaucoma, easiest way to rule it out would be the visual field route. Maybe ask a glaucoma specialist for a second opinion.

***************************************

FROM “MOLD WARRIORS” BOOK BY DR. RITCHIE SHOEMAKER, PG 48-49

The Judge was going blind in one eye in addition to typical MOLD illness. Several other workers were very ill.

They started on my treatment protocol right away, with prompt improvement in VCS scores and abatement of symptoms.

When the med was stopped and they continued to work in the building, relapse began within 36 hrs.

When they were retreated, they improved again.

Fortunately, the site investigation coincided with the time when I had the amazing HEIDELBERG RETINAL FLOWMETER in my office, on load from the manufacturer, Heidelberg Engineering.

Using Heidelberg's dual laser Doppler to measure blood flow to the eye, we could look at 3 tiny areas:

1. The retina;

2. the nerve tissue around the optic nerve (neutral rim);

3. and the deeper part of the optic nerve where the separation between the body and the brain is basically just one cell thick, also known as the LAMINA CRIBOSA.

Examining these sites reveals the effect of cytokines binding to their receptors in the capillaries; reduced blood flow, the marker of a biotoxin patient.

If VCS testing appeared to be low-tech, the Heidelberg was about as high tech as one could imagine.

I was able to show a clear deficit in capillary blood flow to the neutral rim of the optic nerve and the retina in the sick people, but healthy persons had normal capillary flow rates.

With treatment, flow rates increased beginning in 12-24 hours, making the sick people look like the healthy ones. With re-exposure without protective med, flow rates fell within 12 hrs.

So we had biomarkers to spare. The VCS scores matched the cytokine levels and both matched the Heidelberg flow rates, and all matched changes in symptoms, confirming both a decline in health following exposure and improvement in health with treatment.

Since the Heidelberg wasn't portable and the VCS was, and the results agreed, we could us VCS with confidence. To secure the diagnosis of SICK BUILDING SYNDROME, SBS, beyond any doubt, I still had to show that there were no possible variables of alternative (confounding) exposures 00 nothing else might cause a neurotoxic syndrome in these patients.

So far we had showed both the presence of neurotoxic effects and confirmed exposure to toxin-forming mold species. However those findings did not rule out Lyme disease or chronic fatigue syndrome; for example, or exposure to indoor mold from another remove source, as the cause of the illness.

Some patients might have multiple sources of fungal exposures or multiple contacts with biotoxins. Could they have PFIESTERIA or the new blue-––green terror algae making them ill, as well?

Glossary

Pfiesteria – the estuarine toxin former that started my career in biotoxin illnesses. These dinoflagellates, from one of the oldest groups of leaving creatures, killed fish, and made people sick in the Pocomoke River in Maryland in 1997. When the State of Maryland said no one was made ill by Pfiesteria, my introduction to the APPEARANCE OF GOOD SCIENCE was initiated.

VCS test - VISUAL CONTRACT SENSITIVITY test -- neurotoxicological test that shows a distinctive group of deficits in biotoxin illness patients.

****************************************

NOISE/SOUNDS …. MAGNESIUM by Carol in PA, 7.3.09

Supplement with magnesium to help hypersensitive hearing.

Noise Sensitivity - Sensitive Hearing

The Links to Magnesium Deficiency

http://www.ctds.info/noise-sensitivity.html

The Lyme bacteria use up our magnesium, causing a deficiency. A number of Lyme symptoms can be helped by supplementing with magnesium.

Post edited by: Bettyg, at: 02/20/2010 08:50 PM


02/21/2010 03:54 AM
jaime1978
jaime1978  
Posts: 2399
VIP Member
I'm an Advocate

Hi and welcome Smile Glad you found us. I'm sorry to hear about your vision issues, sadly they are relatively common with lyme. I know for instance I had gone to eye doc, one day, everything was fine, the next few days I could have been classified as nearly blind! Everything looked like I didn't have my contacts in, very blury, trying to drive with one eye closed because one was slightly better than the other! Then it cleared up.

Lyme is a equal opportunity infector, meaning basically no body system is left out. it can affect pretty much any part of our bodies, and usually does.

if I were you I'd do a google search on natural things that help glaucoma and see what you come up with, you might find some supplements that can help repair damage.

please feel free to post away here, if anyone has an answer, they will certainly be glad to help out.

warmest regards

jaime


02/21/2010 09:36 AM
KStuff
KStuff  
Posts: 222
Member

Same issues here. I was told by an optometrist to see a neuropthamologist. They specialize in diseases, conditions that effect the eyes and the central nervous system. They should be able to sort things out for you. Maybe get a recommendation from your opthamologist?

02/21/2010 02:51 PM
Bettyg
 
Posts: 32295
VIP Member
I'm an Advocate

the 1 highly recommended is in penn; 6-9 months WAITING LISTS!

06/17/2013 09:23 AM
Lily27
Posts: 1
New Member

I realize this comment was posted a while ago, so I hope that your symptoms have resolved by now! But just in case they haven't, I wanted to share my vision problems and how they were treated. My Lyme went untreated for a while, and permanently damaged my vision. One of my main symptoms is the colors of my surroundings - everything looks slightly off and over saturated. There is a fuzzy quality as well. I am often very overwhelmed being in crowded places due to the massive amounts of visual stimulants.

If you share these symptoms, please message me for the name of the doctor who helped me. He is a lifesaver, and without his help my vision would never have improved. He has worked with many Lyme patients and helped them. The treatment is expensive but well worth it.

Post edited by: Lily27, at: 06/17/2013 09:32 AM


06/17/2013 01:51 PM
kittatt
kittatt  
Posts: 20
New Member

I posted about vision problems a couple days ago and when I noticed this topic I thought I would reply because I have another question about this.

I picked up my antibiotics last Thursday and decided to wait until Friday to take them.

Friday morning before I took any antibiotics I noticed slight static in my vision. (This was what my topic was about.)

Today (Three days after taking antibiotics) I have noticed my vision has been getting worse!

I can read, but words on paper and on the computer screen look a little blurry. I still have static vision + occasional floaters + and after-images.

My eyes were "fine" when I got them checked the other day..

I know lyme causes these things, but is there any chance the increase could be from my antibiotic? Cefuroxime Axetil? Has anyone taken this?

Could it just be a herx?

(Another little detail I don't want to add, but should, is that I was crying a lot yesterday and this morning. Maybe that is another reason why my vision is a little worse...I don't know.)


06/17/2013 03:28 PM
doglick
doglickPosts: 682
Member

Furry vision, I can relate. With me, it happens more in one eye than the other. Often in the morning I will wake to one blurry eye that lasts from an hour to a couple days. comes and goes. Even now after 4 years of treatment. Although the treatment improved everything drastically.

07/14/2013 03:46 PM
Bettyg
 
Posts: 32295
VIP Member
I'm an Advocate

bettygs ongoing eye SENSITIVITIES, etc. link since my original one DISAPPEARED WITH MDJ'S MAJOR TECH PROBLEMS; all in my index of meds/treatments a-k are gone!!

folks were recommending the below lenses helping their extreme SENSITIVITIES TO SUN/GLARE/REFLECTION:

http://www.theraspecs.com/fl-41-glasses/

http://en-us.transitions.com/Products/Transitions-XTRActive/

http://irlen.com/index.php has LYME GREEN LENSES!!

CHECK THEM OUT ;0bettyg

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