posted
Feeling very discouraged about getting denied for disab. Will see a lawyer next week but cannot afford one. Don't have a huge medical paper trail
because I have had no insurance and no money. I just feel too sick some days, a never ending cold. Who wants to hire someone who looks sick,
sneezes all of the time, goes to the bathroom a lot? They said I could still work. I just want to ask, doing what? I have light sound and smell
sensitivities. I have tried so many things. We have run up a number of credit cards buying supplements and seeing the drs that I have. My
husband will get insurance soon but I have no idea how I will have money for copays.We will have to let go of some bills since his insurance
will cost an extra few hundred dollars a month. Our credit will go down the toilet and we will never be able to have a house again. You try to keep hope alive but it gets difficult. I have been on a wait list for 4 mos to see a new lyme
dr. Will he be allowed to give me something that will work? At what point do you let go? I want to work, I want to buy a house again and grow our
own food, maybe have some goats to milk and a beehive. Like I said, I have tried so many things that I could take that I didn't need a dr's
prescip for.I can barely see a thing out of one eye, have flareups of great pain after I think I have it under control, feel like I have the
flu/stomach virus. I feel like pulling the blanket over my head one last time. I have worked and paid into this government for a long time.
The government wants me to help take care of it and then tells me to go **** myself if I ask for something.I didn't even want to apply in the
first place. It is humiliating. I feel weak. I feel like less of a person to say I need help. I have to have a gluten free, cow dairy free diet
like many of you and you know how outrageously expensive that is. We make just a little too much for a food card.I just wish that I had a way to get better and be a productive person again.
I know I am preaching to the choir. We are sitting in this boat wondering who in the hell is going to patch it.Onlookers from the ship who have the supplies that would possibly help, just sit and look while eating their lunch, watching it sink and saying "don't be silly, there is no hole in your boat".
Sorry to be a downer.Just feeling terrrribly discouraged.
Posts: 294 | From southwest mi | Registered: Dec 2012
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Many attorneys (who work with disability cases) work on a contingency fee basis, with payment only if they win the case / request for benefit coverage for you . . . and their fee would be a certain percentage of the BACK pay awarded from the time you state disability begin, stopping at the time of the benefit request being granted.
Be sure to connect with your local lyme support groups to find out personal experiences with the attorneys in your area. IMO, they must - absolutely MUST be lyme literate.
Although, lyme is RARELY the diagnosis that the social security administration considers . . . it's the symptoms, conditions that are caused by lyme or co-exist.
For instance: if you have vertigo or other ear / balance issues (often caused by lyme) that can be independently verified by some vestibular tests and sort of stand alone.
You mention " light, sound and smell sensitivities"
Well, even just the HYPERACUSIS might be a key diagnosis for your case.
Just take it one day at a time. Keep your dignity. Hold onto hope. You don't have to know all the answers now just do what you can each day and take care of yourself -
- even if at the most basic level of nutritious food & whatever movement you can do for basic circulation, rest, and always include some degree of appreciation of beauty and love in the world.
Even if we can't be a part like we wish, I find it helps to appreciation the fact that there is beauty here (or there) and the same for love. That it exists. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Yes, do not give up on disability. As Keebler said, they take those cases on contingency, so you are not paying them. They take a cut at the end when successful. If not successful, no pay for them.
And do be careful about the attorney you get.
As many people have said before, it is not the diagnosis that counts, but what you can't do.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
I did have a lyme dr but I gave up on him the last time I went and he asked me if I was praying,going to church(watching a certain mega pastor celebrity) reading my bible instead of
listening to my issues that I came to see him for including the mess of sores/rash on my back and chest. He wouldn't listen to my heart, literally or in any other way so he wouldn't make a good minister either. He never prayed for me. I was
happy when I first started going but realized he was a broken record. I think he realized that he couldn't charge me a lot because I didn't have insurance so he figured I only have a prayer. I
have been on my own again with no lyme dr for 10 mos. I only got about 3 months of antibiotics anyway because I was reacting with the doxy and sun. Also had amox.I tried one month of zithro
and noticed nothing. He did give me flagyl and I found that to be helpful but only a months worth and wouldn't give me more. I don't know what my coinfections are.I tested neg for bartonella, bab
and erlichia but I hardly have any lymphocytes and the cd57 was low 2 years ago when he tested it. I think it was 28. I believe that I have had this a long time. Of course my d is low. He had
tested me twice once in the winter and once at the end of the summer.The winter was 50, supplemented, but the summer was 29 I believe with me being in the sun(after I was off doxy 3 mos.)Not sure why I am bringing this up. I do
know that there is a strep issue because I saw a homeopath a few months ago and he picked this up on his machine calling it strep residue. The
cocktail that he made for me set my bad eye off to the point where I couldn't work the temp job that I had for a few weeks,(and lost it) giving
me awful pain. I had to have a friend give me some of her amox in order to resolve the pain. That was something that did help the eye pain when I would get it and the lyme dr was giving me
amox. I am certain there are more coinfections, something is killing my lymphocytes. Thank you for your supportive comments.
I am sorry sacredheart.
I hope this will be a good attorney. If I get a bad vibe from him I will move on. I don't care if they diagnose me with sound and light issues if that will be enough. I just worry about getting
an ms diagnosis and being forced to use ms protocol or I lose it but I am certain there will be death if I cannot be treated for bugs.
Prednisone will kill me. I have already been down that road. I fear it and any of those commercials for pharmaceuticals that have 20 side effects and may lower your immune and don't take this if you have tb.
There is no support group in this area. I talked to the woman who used to lead it. She said to be very quiet about lyme when you try to find another dr. sigh
Thanks again for your help.
Posts: 294 | From southwest mi | Registered: Dec 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say "did have a lyme dr" yet then your description of him is very clear:
This was not / is not a "lyme doctor" - not at all. Sorry.
you also say "I just worry about getting ms diagnosis" . . .
well, again, many with "MS" diagnosis don't receive disability benefits, either. It's all about what a person can or cannot do -- &/or diagnoses that clearly affect output.
And an "MS" diagnosis would still leave you in control of testing / treatment. You have the choice in how to proceed, no matter what symptom labels may be tossed around you can find out more about what might be behind them or how approached.
Energy or words are not with me today so I can't offer what I wish might be a good reply.
As there is no lyme support group near you, though, you might connect with the Michigan STATE group. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
Yes, prednisone would kill you .. so stay away from it.
Sounds like you need to find a real LLMD. Three months of treatment won't cut it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I could not get ssdi for lyme or fibro or brain injury the things thatreally debilitate me
They needed hard facts...they ignored all the real stuff th a t affects d me and gave it to me based on knee xrays showing sev ere arthritis requiring knee replacements
It didnt matter that lyme started my osteo arthritis in my 30s
The easiest way to get it is to have positive medical tests showing disability
Also. I know many...including myself who rely on buhner herbs for lyme and coinfection tx
His books are cheap on amazon and the herbs can cost less than a few hundred dollars a year if you buy cut and dried and make tea
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A TILT TABLE test may be helpful if you have symptoms of NMH or POTS. Even if someone has high blood pressure, they can have bouts of it dropping during standing, etc.
In light of your sensory issues, an audiologist might also be consulted for verification - see relevant detail here
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
A lot of folks have been down this road - SS turn-down, need to get an atty to take you through the rest of the process. You need to find one that takes cases on contingency, as other posters have mentioned above. They take a certain percentage of back money owed to you.
You have a free online state group at http://health.groups.yahoo.com/group/mississippilyme - ask to be added. That's one way you could inquire about who the attorneys are who people have worked with, and you want to know who the successful ones are.
Medicare kicks in two years after you first apply for SS. So usually people get awarded SS and then wait a matter of months before Medicare coverage starts.
That doctor you described was not a Lyme doctor! Real Lyme doctors get you tested, check your blood chemistry, and get started with some form of treatment.
If you need to test more for co-infections, and qualify for low income, you can get 75% off of IGeneX lab testing through www.lymetap.com.
It's called figuring it out one step at a time - gotta have some patience with the process. You can work with each of your symptoms and discover ways to deal with them. Treatment may consist of both antibiotics and complementary med.
You can supplement Vit D - I take the NOW drops, pretty inexpensive in the healthfood stores.
You can boost your immune system in many ways. One good product is called Host Defense - it has 17 mushrooms in it. Healthfood stores should carry it.
If your eye is at all related to inflammation, for me, drinking mangosteen juice stops Lyme eye inflammatory symptoms. I drink the Mango-Xan version, which you can find in healthfood stores and online.
Little by little, you can find out what's going to help make you feel better. You're really at the beginning of this procss still - don't give up - there's a lot for you to try and people here will have suggestions.
Posts: 13116 | From San Francisco | Registered: May 2006
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
I know of a patient advocate who has been very successful helping people get on disability.
She is very reasonable and accomplishes much in a short time.
You can me PM me for contact information...
Posts: 1886 | From Earth | Registered: Jul 2013
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posted
Everyone or 90% of first time SSDI applicants get denied first time. Once you get a contingency attorney, you will win the appeal and you will get retro back-pay from the time you filed.
You have to tell them what you can't do anymore. Not be so specific on certain diseases like LD or CFS.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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posted
The lyme dr I had was one of the names given to me on here (2 yrs ago)and is still on the state lyme list when I asked again for more drs.
I have tried so many herbs.For Buhners(I read his book too) I did smilex, astragalus(which was a little helpful at first doesn't do much for me
now), stephania root, cat's claw that I still keep trying. I have become quite familiar with herbs.I did two bottles of the mangosteen and it didn't really help. I had the Igenex test done
two years ago and paid full price.I wish I had known but I will check into that. It was about three months of antibiotics but many more dr
visits. I thought he was going to try me on minocycline and he didn't.He did zithro for two weeks on two weeks off and then two weeks again.One of the dr's office that I listed that I went to evidently never responded with a report.I
don't know how that is possible.I think they suspected it was lyme.This was almost three years ago but they tossed me around like a hot potato
and then they said it was just an eye thing, go back to the eye dr who put me on prednisone. I swear I am so absolutely sick of drs just
thinking about that situation and the last one.I am in Michigan too.You know, a clean state with no infected ticks. I have an appt for a free
consult with a lawyer on Tuesday.I am quite certain I have a detox issue. I do find the infrared sauna to be helpful just haven't had the money. I get cholestramine from my mom who won't
take her prescip and has been a life saver to me otherwise I don't know if I would still be here. I had been getting the migraines/neck pain 50% of the month, niacin was helping at first and then
it quit and I tried her cholestramine, now I am down to a few days a month of splitting migraines and neck pain but that is easier and you don't think about suicide all of the time if it is much less so I am very grateful for that.
Posts: 294 | From southwest mi | Registered: Dec 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say that "The lyme dr I had was one of the names given to me on here (2 yrs ago)and is still on the state lyme list when I asked again for more drs." (end quote)
While, often names on lists get there for good reasons still, sadly, any doctor can get their name on a list.
And I certainly would not be the first patient to "settle" for a doctor who at least knew just a little more than the average one or did not kick me out or verbally abuse me.
But I found out settling for haphazard treatment (even if I was unaware it was such or they were nice but it was just the extent to what they could offer) was also abusive to me.
It's really important to seek out reviews from patients who have seen any doctor we might consider. What you describe in the doctor you have is a disaster for someone with tick borne illness. Not at all what is expected knowledge, procedure or attitude of someone who is truly lyme literate. Success is highly unlikely with such a doctor.
Even with little funds, there are still ways.
But, for now, please communicate with those though gave you that doctor's name that it does not belong on the list. It belongs on the list of who "not" to see. If you don't tell them, others may want right into a bad situation as well.
And back to your matter at hand. I've been where you are and the boat can get steady again, really.
Good luck on Tues. I hope the atty has been referred by someone who really knows about lyme and they say this atty is truly LL. Hope so. If not, keep looking.
Remember, too, that SSD is not a welfare hand-out program. This is your disability INSURANCE. You are simply requesting coverage be implemented.
No one is "on" disability. Minor distinction but when that word "on" is used it often carries shame with it. Same with "get" - no one "gets" disability. Benefits of membership, having paid in are simply instated - but the process has become one that is highly blaming of the patient.
SSD is our insurance coverage.
Remember that. You have paid into the program. Through no fault of your own and no help from the medical establishment, you are now simply requesting that your coverage be honored. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
The first time they do not even look at your application just stamp it denied!!
They hope you will give up and die.
The second time they glance at your application out of one eye for 2 seconds,then stamp it denied,they are sad you did not die.
Get a lawyer that takes one third of what you get in the end.
Call all your senators,raise as much Hell as possible.
MADDOG
Posts: 3996 | From Ohio | Registered: Oct 2000
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
SSDI attorneys don't take money until your case settles in your favor (no money if you don't get SSDI) and then they can only take up to a certain amount.
It takes many appeals to get SSDI. Be patient. I think it took me 4 or 5 years.
It's good that you're getting an attorney early. I wish I did that.
Posts: 2839 | From California | Registered: Jul 2012
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Maddog i dont think mine took that much...it was a set fee
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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