posted
I am shocked by what I have gone through since being diagnosed with Chronic Lyme Disease!
Here's what happened: - Lost my job after a diagnoses of Chronic Lyme in January after 2 months on STD (which they didn't pay) - My disability from work denied my claim - so no income - DESPARATELY in Need of more documentation for the LTD insurance company and not sure where to go - PLEASE HELP!! - I am seeing a LLMD who diagnosed me - He's had me on Doxy 400mg, Azithomax, Mepron and Rifampin - Went to Neurologist and they took SPECT (moderate to severe global hypopefusion) and MRI with grey matter. NEED A SPINAL TAP and MENTAL EXAM - Don't know where to go! - CD57 WAS 3 and I have not NK cells - Weak Immune system - Tingling in fingers and toes on Left side - Eyesight is really bad on last exam - I'm confused, scared and in need of someone to help me figure this all out! - I think I've had this for over 15 years!
Please help me understand what I need to do legally with my disability carrier to get my claim paid. But more importantly the stress of all of this is making my Lyme worse!
Posts: 20 | From Saratoga Springs, NY | Registered: Mar 2009
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posted
Mate, just joined myself, and based UK side, so nothing much I can suggest, but wanted to say that hope people on here get come to your aid, and will be praying for ya!
John
Posts: 9 | From England | Registered: Mar 2009
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Hi,
I am pretty sure there is info here about disability and insurance issues. Maybe Bettyg can help you when she comes on the board later.
If you type disability insurance and other issues into the search bar, you will probably get a lot of info. Try and calm down if you can and sort it out 1 by 1. Sorry, you are having such a rough time,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
WHY do you need a spinal tap!? I would not have that done.... there's no reason to! You've already been disagnosed and are being treated for lyme anyway. Less than 30% of tests come back positive from a spinal tap. Lyme doesn't usually like to hide out in the spinal cord or fluid... it likes muscles/tissue.
I'd also be confused if your lyme doctor hasn't told you you NOT to have the spinal tap himself.
I need to get a SPECT scan too.
My CD57 was 9, which is bad. Just like 3 is very bad/low.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Do NOT get a spinal tap. The figure is more like 20% accurate in finding Lyme. So when the test comes back negative, the insurance company can use that against you.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Do a search here on spinal taps. The search function is near the top of the website in very small print, under the gray "Post a Poll" rectangle.
Most here don't recommend them because they have a very low yield of positive Lyme tests.
Other tests will probably be more beneficial and less invasive.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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bettyg
Unregistered
posted
welcome, i sent you a pm earlier stating to join the DISINISSUES free site; disability insurance issues, and to check MINOUCAT'S support post on disability issues.
you stated you were blocked by my newbie package; sorry i don't understand that as you should be able to click on the link at the bottom of my posts. so please try again OR go to top of MEDICAL forum; my newbie links post is there ok!
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @
please go to my newbie links, copy the entire thing, and then print this off....FINANCIAL BURDENS compiled by melanie reber print off pages 74 - 92; outstanding info there. i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences.
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.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING. delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
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. *******************************************
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posted
Wow! I have read all of you feedback and thank you for all the help. I now have an idea of what I am up against. Thanks Betty for giving me the heads up on CC and all the great information. I cancelled. You are terrific and a great advocate for us!
Ok, I will remain calm and definately not do a spinal tap as evidence for the insurance company to beat me up more that the Lyme has at this point.
So, since I've been denied for my STD I'm going to gather all the evidence and fight like hell and get a good lawyer - hopefully one who specializes in Lyme cases.
Please reply personally if you know of a good lawyer who can make these insurers shake in their boots, but also a lawyer who has won these cases. Also, where should I go for a thorough workup for my Lyme?
I am in the process of documenting all my evidence so they will not be able to deny me again. Also the ERISA information is great! Time for me to become the snarling biting vicious alpha dog! I definately have it in me....
I will keep you all updated as to my progress and this is the best Lyme forum on the net!!!
Thank you all, SaratogaLymeGal
Posts: 20 | From Saratoga Springs, NY | Registered: Mar 2009
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posted
Is the spinal tap for diagnosing/confirming the Lyme or is the doctor ruling out other things (MS, menengitis, etc)? If it is for ruling out other things, I would think about getting it done.
I had a ST and had an awful experience with the spinal headache and blood patch that didn't work well. However, if necessary to confirm or rule out something serious, I would do it again.
Posts: 41 | From SC | Registered: Jan 2009
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posted
My spinal was looking for MS or menengitis. They didn't look for LD at all.
Seems strange that insurance wants ST confirmation. I thought they looked mainly at ELISA and/or WB.
Posts: 41 | From SC | Registered: Jan 2009
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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. 
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