posted
I am desperate to help my 35 year old brother who up until 3 months ago was perfectly healthy and working in a local finance firm. He started having severe eye pain and headaches to the point that he had to take a leave of absense from his job. He works on a computer all day long and found that he just could not function anymore....he also cant drive, exercise, read or watch TV for long periods as his eyes are very painful.....He is also very sensitive to light and his eyes are very dry. He has seen so many eye specialists at Wills Eye Hospital who can not find anything wrong. Well last month the pain got so bad that he went to Jefferson Hospital in Philadelphia and spent a week getting treatment for his eye and head pain....again he saw several neurologists and headache specialists and he is now on medications for Migraines but he has had no relief....now here is where the Lymes question comes up..........While in the hospital he was tested for Lymes........the Elisa came up positive.....the Western Blot was negative....they did a PCR which was negative and then a spinal tap again the CSf was negative. Does this mean Lymes is completely ruled out????? I may be barking up the wrong tree but I want to leave no stone unturned.....Oh yes and he just got results back from a rheumotologist and the blood work was all negative.....and also his white blood cells are normal too. Any advice would be so appreciative. Hugs, Crisann
Posts: 14 | From NJ | Registered: Jul 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Hey good friend, Yes if he had a positive Elisa he
defiantly has something and yes it is most likely
Lyme. I would suggest he gather test results and
ask the experts here who can help you find a LLMD
for him. It is a know fact the tests are
commonly misinterpreted and with even one band
positive on a WB you can indeed have Lyme. The
time line you describe is a match to how I
progressed. The 2 eye docs I saw found nothing
either. The great thing is you will not have
to possibly wait another year or years to get him
treated. Did he have a Cat or MRI? If so I
suggest getting those reports also. Any and all
reports are invaluable to treatment.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
If eye pain (and other eye issues) and headaches are the only symptoms, I would not suspect lyme. I would get his head more thoroughly examined. Has he had an MRI?
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Crisann,
I am glad your brother has you as an advocate for his health. When a person is sick it is sometimes too overwhelming for them to even begin to figure out what to rule in or rule out, let alone know where to turn for help. You are a wonderful person for helping him.
As for whether or not he has Lyme, I agree with Pinelady who suggested your brother see a LLMD. I had severe migraines and vision issues for years (although they were different than your brother's) and went to several eye doctors looking for answers to no avail.
My niece encountered much the same thing: vision problems and migraines.
In the end, after years of suffering, we have been diagnosed with Lyme and co-infections. Lyme is complicated and can show up differently in each person.
I believe you are correct in pursuing this possible cause of your brother's illness, especially in light of a positive ELISA test. Almost nobody ever gets a positive on those!
A LLMD will test your brother through Igenex labs. This is the most accurate lab for Lyme testing. He will also give your brother a thorough screening and be able to say "yes" or "no" to the Lyme question.
If you go to "Seeking a Doctor" someone will help you find a LLMD for your brother.
Best wishes to him.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
quote:Originally posted by timaca: If eye pain (and other eye issues) and headaches are the only symptoms, I would not suspect lyme. I would get his head more thoroughly examined. Has he had an MRI?
Best, Timaca
I completely disagree with this statement!!! And your brother tested positive on an ELISA? Do you know how rare that is?
Your brother needs Lyme treatment (tx). Find a doctor for him in the "Seeking A Doctor" section of this forum and get him going ASAP before the infection advances to the point he does test positive on WB and others!
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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posted
I too tested + on the Elisa, but - on the WBs (Quest).
Posts: 12 | From West Coast, USA | Registered: Jul 2009
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bettyg
Unregistered
posted
breaking this up for us neuros to read since she is also so sick & doesn't understand this board yet; she sent me pm explaining this.
this will give her an idea what helps us neuros too betty
quote:Originally posted by Samandaxo:
I am desperate to help my 35 year old brother who up until 3 months ago was perfectly healthy and working in a local finance firm.
He started having severe eye pain and headaches to the point that he had to take a leave of absense from his job.
He works on a computer all day long and found that he just could not function anymore....he also cant drive, exercise, read or watch TV for long periods as his eyes are very painful.
He is also very sensitive to light and his eyes are very dry.
He has seen so many eye specialists at Wills Eye Hospital who can not find anything wrong.
Well last month the pain got so bad that he went to Jefferson Hospital in Philadelphia and spent a week getting treatment for his eye and head pain.
again he saw several neurologists and headache specialists and he is now on medications for Migraines but he has had no relief.
now here is where the Lymes question comes up; While in the hospital he was tested for Lymes.
the Elisa came up positive; the Western Blot was negative.
they did a PCR which was negative and then a spinal tap again the CSf was negative.
Does this mean Lymes is completely ruled out??
I may be barking up the wrong tree but I want to leave no stone unturned. Oh yes and he just got results back from a rheumotologist and the blood work was all negative.
and also his white blood cells are normal too. Any advice would be so appreciative.
Hugs, Crisann
crisann,
so glad you are an active activist for your dear brother! also we have LYME with NO S on the end named after lyme, conn. correct the drs. when they use this ok.
i have a bunch of eye info galore, but it's on my HOME files; my service provider is down so i am at library for another 5-10 minutes most.
when i'm back up and running, i'll try to get back here & paste all the good info. xopx
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bettyg
Unregistered
posted
Welcome; I'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
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. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
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:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
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.
UNDER OUR SKIN dvd LYME DISEASE documentary, www.lymediseasefilm.com go to this site to view trailer of UNDER OUR SKIN -5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!
please get a western blot igm and igg blood test drawn LOCALLY on a mon. or tues. and sent to the below ok! all details are there.
IGENEX , CALIF. BLOOD TESTINGS ...check current $$!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form.****************************************************** * * MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
* Also, look for post by LYMETOO/TUTU on DR. C's (Missouri) explanation of the western blot IGM & IGG numbers, below!
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!
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.
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 v\ery interesting and even has an impression of this phenomenon. "Scheerer's phenomenon"
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.
**********
that's all i have; treepatrol's NEWBIE links at top of medical MAY have more; i don't know. best wishes.
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