posted
Hello, I am a regular visitor and frequent poster since last year. I logged in with a new user name due to the nature of this post.
For the last two years I have been receiving benefits under a long term disability plan.
My diagnosis has been Chronic Neuroborreliosis and Bartonella. The diagnoses have not been questioned by the LTD disability company, only my inability to work.
Now the insurance company is stating that according to one of the authors of the recent IDSA guidelines, I do not have lyme. Rather, I have a psychiatric disorder Conviently, my coverage for psychological conditions ends after two years of payments
My current attending physician received a letter stating that Dr. X (author of IDSA guidelines) had reviewed my files and could not find any data to support lyme or other neurological disorder.
A SPECT scan showed mild gloabal hypoperfusion, but Dr. XXX does not consider that indicative of a neurologic disorder. Or a postive Igenex IgG Western Blot, high Bartonella titer, and low CD57 count. Or statements from four lyme specialists who have examined me stating I have chronic lyme disease and can not work.
The company has hired one of the IDSA guideline guys in attempt to stop further payments! How do you fight these guys?
I have many questions. I can't seem to think clearly enough to formulate them.
For now, I am interested in your thoughts, suggestions, and support.
[ 12. March 2007, 01:09 AM: Message edited by: afternoontea ]
Posts: 5 | From away from home | Registered: Mar 2007
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posted
Can you send your information to Pat Smith of the Lyme Disease Association at [email protected]? She wants to hear from patients who have been denied treatment specifically because of the IDSA guidelines. Best of luck to you.
Posts: 991 | From California | Registered: Feb 2006
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
You MUST hire an attorney to head them off at the pass. I have the name of an excellent attorney who handles cases just like yours. And knows Lyme. He recently helped a friend of mine after her benefits were terminated. And is now working with another friend who is in the esact situation as you. Her LTD sent her for a neuropsych and the psychologist said she has somatoform disorder. So since she is at the 2 yr mark, she was expecting a termination. The attorney will stop it
These attorneys are expensive, but it is the only way you will win. Do not try to win this alone.
If you want the name of the attorney, please let me know and I will either PM or email to you. I have heard excellent things from both I know who have worked with him.
Posts: 2276 | From NC | Registered: Oct 2000
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bettyg
Unregistered
posted
when it rains, it pours; they're screwing you royally!
i agree with other poster letting pat smith know. my other suggestions are this:
1. send a copy of this all to Conn. AG Richard Blumenthal, [email protected], since he's investigating IDSA anyway!
2. send a copy of what you received to YOUR STATE'S INSURANCE COMMISSIONER who oversea each state's health, auto, life insurance industries! i've ready to write iowa my 4th email to them1
3. send a copy of what you received to your FEDERAL senators/house reps in DC! make them aware of what you are going thru.
also inform your house rep of the NEW REP LYME BILL waiting for them to CO-SPONSOR it. check activism; i haven't memorized this new bill no. yet .
4. have you signed up for FREE DISINISSUES WEB SITE? this would be good question for moderator, sarah shapiro, and 2-3 lawyers respond there off/on.
Thank you for your prompt responses. I went back to include the full name of the doctor.
Connie, could you send me the name and contact information for the lawyer?
I have been under the care of a psychologist with expertise in neurotherapy for over two years. We have twice weekly psychotherapy sessions and until recently 4 times a week neurotherapy sessions. He's willing to fight with me.
He has been interviewd by the company and told them I do not have a primary psychiatric disorder. We are composing another detailed letter to the company. The neuropsych testing apparently shows some "obvious deficiets" that the psychologist who administered the test (contracted by the LTD) chose to gloss over.
And I will start contacting the institutions you have all suggested.
Thanks again
[ 11. March 2007, 06:24 PM: Message edited by: afternoontea ]
Posts: 5 | From away from home | Registered: Mar 2007
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Greatcod
Unregistered
posted
Yes, first get a good lawyer. You must have a right of appeal. A sickening abuse of medical science. Dr H is a neurologist, and I think probably not qualified to make the psychiatric diagnosis that he did. Interestingly, he made that diagnosis without seeing you, which got Dr. Jones in such hot water. You might consider at some point arguing that you have post infectious CFIDS, which is an official disease according to the CDC. And it might be worthwhile to begin application for Soc Sec Disability, in case you don't beat the *******s. I spent some time today reflecting on what Lyme has done to the last 20 years of my life, and a big part of it was the endless humiliation by so many medical "experts", of being kicked when I was down. Hang in and know that others have been down the this difficult road.
posted
Greatcod, I am not eligible for SSDI or medicare. I stopped working on January 15 two years back.
Had I stopped working 15 days earlier I would have had enough credits for SSDI. Had I stopped working 5 months and 15 days later I would have had enough credits.
I was in graduate school from 1994-1999, and deductions were not taken my stipend. I worked from 1989-1994 and then started again in 1999.
Posts: 5 | From away from home | Registered: Mar 2007
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posted
This is precisely why we need the bills in congress to pass and for Atty General Blumenthal to WIN his case & show that anti-trust laws were violated.
Why does Dr. X opinion, and it is just an OPINION, carry so much weight? There are numerous experts that counter his opinion. Insurance & SSDI are looking for ways to get out of paying.
Just a note about Dr. J. The way I understand it, he authorized a refill on a script given by a different dr. for strep throat. He did not make any diagnosis of Lyme over the phone without seeing the children. It is true that the Medical Review Board is trying to hang him on this.
One more thing. The biggest question I have is why on earth is the IDSA persecuting us and our drs? What do they care how we decide to treat our illness? Is there so much jealousy, pride, money involved that the IDSA cannot face the truth and don't want anyone else to know the truth or get proper help?
Sorry, this was more than one question. This just doesn't make sense to me and it is outrageous!
Kayda
[ 11. March 2007, 08:21 PM: Message edited by: Kayda ]
Posts: 582 | From midwest | Registered: Nov 2006
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I tried to PM you, but couldn't. Could you please contact me? I don't want to hijack this post, but I need the name of an excellent attorney, too to win my case for SSDI.
Thanks so much for your help.
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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You wrote: >>>According to IDSA Dr. the data provided does not indicate the presence of a neurologic disorder or of Lyme disease. The IDSA Dr. recommened that client undergo a brain MRI and an evalution by a neurologist."
>>>>A SPECT scan showed mild gloabal hypoperfusion, but IDSA duck it seems does not consider that indicative of a neurologic disorder. Or postive Igenex IgG Western Blot, high Bartonella titer, and low CD57 count.
So the duck is completely denying every single test that shows you have Bb Lyme & Bartonella. How can he possibly discount all those tests?
It just goes to show, you can have all the positive tests in the world and it will still be denied treatment & help for Lyme. It's like they are saying the sky is green and the grass is red & the sun is black and no one better say otherwise.
Then, they have the nerve to turn around and and say they care about patients like us? Whaaattt???
This has to be stopped or else insurance co's and SSDI will systematically go through their files and delete all Lyme patients. That's what I feel like is happening. We're all being deleted by the touch of a button.
I'm hurting for you!
Kayda
[ 11. March 2007, 08:22 PM: Message edited by: Kayda ]
Posts: 582 | From midwest | Registered: Nov 2006
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posted
I do not think it is a good idea for afternoon tea to write the details of her case including the doctors name. I wrote her privately and told her this. Please remember, that she has to watch out and protect herself. These insurance companies do google searches and may find her writing about her own case. I know someone wanted the name, but really you should not ask people who are on disability to post the details of their case like this because it could only hurt them.
If I were you, afternoon tea, I would remove all of these details. Hire an attorney who can advise you, one that specializes in LTD and ERISA cases NOT SSDI and stay off the boards....
These cases can be won, but it has to be done in a very calm and systematic way. Connie knows a lot about this and I am sure the lawyer she is recommending is a good one. But please, afternoon tea, please protect yourself and DO NOT post any information about your case that might identify yourself.
Posts: 230 | From Somewhere Sunny | Registered: Nov 2004
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Could you pelase send me the name of the lawyer. I'm in PA and I am fighting my insurance company because they have blocked all my antibiotics- even though I have positive tests and the PA Dept of Health is calling me home! I have to get a lawyer because the Babesia meds are outrageous. Please PM the name of the lawyer and where he/she is located. And anyone else who may have a name and numebr I would appreciate too! I have struggled too long with this disease to sit back and let them win. My own in network cardiologist told me to go after them.
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
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posted
Yes, maybe everyone who used this doc's name in their reply should go back and edit to remove it, in order to protect this patient. Trolls definitely do read this forum and use the information against us.
BE SURE TO SEND THIS INFORMATION TO ATTORNEY GENERAL BLUMENTHAL. It is exactly what he is looking for in his case against the IDSA. Get an attorney for your case, but also send the info to Blumenthal for everyone's case. Just a few paragraphs summarizing the situation and giving the name of this reviewer, noting that he is an author of the IDSA guidelines. Give your contact info, so they can get back to you if they need more.
It burns me up that such docs review cases all the time and make decisions that prevent treatment, SSDI, disability benefits, without ever seeing the patient, and this is standard procedure. Yet they go after Dr. Jones!!!! If hypocrisy were fatal, every one of the IDSA authors would be dead. These are people who put no value on human life. I think of them everytime another lyme suicide happens.
Posts: 8430 | From Not available | Registered: Oct 2000
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Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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Greatcod
Unregistered
posted
I have deletyed the Dr's name..sorry I put up in a case like this
For Afternoontea--An alternative to SSDI, if you don't have the credits,is SSI. I don't know what state you are in, each state has established its own permissable asset level for SSI. In MA its $2000, not counting your car and home. If you have more, you have to spend down. The health care coverage is thru Medicaid, and the coverage is good. I think you have a very good hand to play with your neuropsych person on your side; that's very encouraging.
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posted
Thank you Kayda, I too have removed the names.
Posts: 5 | From away from home | Registered: Mar 2007
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
The attorney I am sending to afternoontea is LTD only. No medical insurance claims issues or SSD/SSI cases. LTD attorneys are very specialized and nearly all of them do this only.
If you need an attorney for SSD/SSI, they are a dime a dozen. Just make sure you get a good recommendation from others who have Lyme. The attorney also does not have to be in your area, either. Many who specialize will travel if need be. For out of town cases, most issues can be handled by phone, fax or mail.
There are also numerous disability advocacy firms. Disinissues has a list of attorneys and advocates. If you join that site, they have a wealth of information on these issues.
Afternoontea, I will PM you tomorrow morn with the name and contact info of the excellent LTD atty.
Posts: 2276 | From NC | Registered: Oct 2000
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WildCondor
Unregistered
posted
Good post because many are in, or will be in the same situation. What does LDA have to say? As individuals, we together have to fight this! And fight we will!
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posted
I will say, that the LDA was never helpful to me in any way. I contacted them and got a reply of good luck. I understand that they are over worked though and cannot handle every issue. So I am not complaining really, I am just telling what happened with me. I did not expect them to help me with this issue....
Getting an ERISA lawyer is the only way to go. As Connie states, ERISA is NOT the same as SSDI/SSA.
ERISA LTD is long term disability that your employer gives you. The laws are very different and truly they favor the companies over the people. No matter what illness you have, lyme or other, they try to prove you don't have it. So you have to keep that in mind when fighting them. This is not really an attack against Lyme per se, but they certainly will use those new guidelines! And they certainly will hire those doctors.
Another thing people can do is file complaints with the state medical boards against doctors who do this type of work with insurance companies. It might not affect the doctor but it does bring more and more awareness to the problem. If you do this, I would have someone else write the letter. Otherwise the company will say things like if you can write a letter like this, then you can work. Sad....but true.
IF you are applying for SSDI or SSD, it is a completely different set of rules, etc. There are lots of places on the internet to read about this.
Posts: 230 | From Somewhere Sunny | Registered: Nov 2004
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posted
I have not been on the boards for quite awhile.
I would like to send the information about what happened with my case to Blumenthal. Do you think it would be helpful Lou, even though I live in another state??
Posts: 230 | From Somewhere Sunny | Registered: Nov 2004
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posted
To answer your question about whether to send such info to Blumenthal if you don't live in CT......I don't know for sure, but would do it anyway and let them sort out whether they can use it. If only for background, I would think it would be helpful. Make sure they know what state you live in, and where the offending company is located. Make it short, with contact info if they need to know more about your case.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Thank you all for your advice and support. I still have individual pms that I will reply to. It's been a tough few days.
I looked on Blumenthals webpage and could not find any information regarding the IDSA. Before contacting my state insurance board, I'd like to make sure I have the correct information. Does anyone have a link or further information?
Posts: 5 | From away from home | Registered: Mar 2007
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posted
Does anyone know what the maximum dollar amount of SSDI you can get a month and still receive SSI in Tennessee?
Posts: 310 | From TN | Registered: Jan 2007
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SSDI is the federal disability program which is based on what you have contributed from the amount taken out of the income you have had.
SSI is the STATE disability program which is designed for people who have not contributed enough money in enough quarterly amounts to the SS funds through payroll or self-employed deduction to the federal government.
If you don't have enough work history and deductions through the federal SSDI program, you have to file for STATE sponsored SSI disability program.
I don't know how many quarters or years' worth of income deductions are needed to make you eligible for SSDI, nor do I know the formula which is used. I do know that the maximum SSI payments in TN are around $550/month.
You can research the Social Security website...just google it. You can also find out more about TN's formula. Unfortunately, now that TN has messed up TennCare for insurance, a person getting SSI through the state is no longer automatically eligible for TennCare coverage.
A person is eligible for Medicare insurance coverage after two years of unemployment because of disability. I hope this helps answer your question.
Best wishes, Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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bettyg
Unregistered
posted
Originally posted by afternoontea:
Thank you all for your advice and support. I still have individual pms that I will reply to. It's been a tough few days.
I looked on Blumenthals webpage and could not find any information regarding the IDSA .
Before contacting my state insurance board, I'd like to make sure I have the correct information.
i'm copying info from iowa's insurance commission here, where "ia" shows up, type in your state's 2 letter abbreviation should bring up YOUR state's info!
Do you have a question about a insurance company not paying on a claim or reinbursing you? If so you will need to fill out a complaint form on line at www.iid.state.ia.us
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