posted
Really sorry to hear Sammy...you are in my thoughts and hopefully something will come through...you are a very strong person and have gone through a lot.
I really hope the ivig pulls through...
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momindeep
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Prayers continue and praying that you can trust the Lord.
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momindeep
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posted
Still praying and hoping positive news comes to you soon.
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Rumigirl
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posted
OMG!!! I just saw this (I've been off LN for a long time until now). I've been wondering how you were and meant to email you.
This is beyond belief!!! They are denying the absolute diagnosis that you have and ramifications of not getting the IVIG.
Please, please, make a strongly worded written complaint to your state AG"s office, making sure that you stress that this if life-threatening (or whatever words you want to use---it's an emergency) and that you need their help immediately.
You can start the complaint process verbally on the phone, and follow up with written statements from yourself and your immunologist (ask his office for a copy of whatever he has already sent the insurance co).
This is your best bet right now. I did it, and it is the only reason I got my IVIG denial overturned in a matter of days. My insurance co had without warning revoked an authorization already given for IVIG and my port care!! And I was not allowed to do the port care myself---so it was life=threatening.
I got NOWHERE with the insurance co repeatedly. They'd be very happy if I kicked the bucket! But the state AG's office got on their case immediately, because it was an emergency, and my insurance co reversed the denial! And I've had no trouble ever since on this matter.
Don't delay on this, in spite of how horrible you feel.
Pneumonia??!! Good God, this is terrible! Please, just start with a call to the AG's.
PS It seems to me that this belongs in Medical Questions, except that you are asking for prayers, so . . .
[ 02-21-2013, 09:48 AM: Message edited by: Rumigirl ]
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momindeep
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posted
Hoping to hear from you soon and wondering how you are getting along. Still keeping you in my thoughts and prayers.
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Sammi
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Dekrator48
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posted
Praying for you, sammy.
Hope you are able to give us some good news soon.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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sammy
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posted
*Update 2/21*
Hi friends,
I haven't been here much lately because I've been feeling worse. I ended up developing some cellulitis in my feet. I'm in extreme pain and can hardly walk.
It started out as severe swelling in my feet and legs and just got worse. I've also had fevers all week.
So I really need to get back on my IVIG...
Next week I will finally be able to get the specialty labs for my immunologist. I have to go through the full diagnostic testing again to prove that I have CVID to my ins co (so I will have tests next week and the first week of March).
My doctor is allowing me to do the tests back to back because he is certain of my diagnosis, otherwise I would have to wait a month for that second week's test.
After we get all the test results my doctor will try to appeal again.
In the mean time my home infusion nurse has decided to try to help by coming out every week to show that I am home bound and document how sick I am without the IVIG. She thinks that this will help.
Right now I am trying to take everything one day at a time. Trying to hang on.
This has been a very difficult month for me. I greatly appreciate all of your continued prayers, encouraging thoughts, and any advice.
Thank you.
Posts: 5237 | From here | Registered: Nov 2007
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Sammi
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posted
sammy, thanks for the update. I am so upset this has happened to you, but I am glad the ball is starting to get rolling.
So many people are on your side! If only the insurance company was. Your infusion nurse sounds very nice.
Taking things one day at a time is the best. We are all still praying for you. I hope your next IVIG is really soon.
Hang in there okay?
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lpkayak
Honored Contributor (10K+ posts)
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posted
sammy-i think of you a lot even tho i havent been writing much. i hate what is going on and cant think of anything to suggest or do for you. it sounds like some things are moving forward and you have a few importatnt people fighting for you. i hope it gets resolved as quick as it can so you can get your meds.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I think that WILL help with your home health nurse! That was good of her to suggest it!
Does the testing make you feel ill?? I HOPE NOT!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Dekrator48
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posted
Good to hear from you, sammy.
I think that will also be helpful for the home health nurse to document your home bound status and increasing illness.
I was a home health nurse for 10 years. Proving home bound status is one of the most important things between the nursing agency and the insurance company. Documenting a steady decline in your health will be helpful too. She should be as detailed as possible...she probably already knows that.
I'm glad you can get your labs done soon.
I will continue to pray that this all works out for you very soon and your health improves greatly.
Hugs!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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AuntyLynn
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posted
Praying for your miracle Sammy.
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Rumigirl
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posted
Sammy, this is terrible!
I know that it is an extreme burden for you to do this, but I can't emphasize enough how important it is that you make an emergency complaint with your state AG's office in their Health Bureau.
Don't depend just on the tests alone. This insurance company (and Medicare!) has not shown that they are on the right side of the fence.
So let the State AG's office be your lawyer to make them do what they should!
When my insurance co dumped me from IVIG, and even withdrew their existing authorization---all without notice---they also dumped EVERY patient on IVIG,
according to my dr. MS patients, etc., etc. He said that hardly anyone got back on, except me. The ONLY reason that I got it back was that I was willing to "take it to the mat" with the State AG"s office. And now they've given me no trouble ever since. Pretty much no one else was willing to fight it the way I did.
So the squeaky wheel gets the grease! But you have to do the thing that stands the best chance of forcing them to do what they should---and this is it from my hard won experience.
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AuntyLynn
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posted
Sammy -
I know this is a fight over IVIG, but for what it's worth ... lymedisease dot org's advice on fighting (IDSA based) Insurance denials.
Rumigirl
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posted
up for sammy.
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Sammi
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posted
Sammy, prayers continue for you.
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Sammi
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posted
Sammy, prayers continue for you.
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momindeep
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posted
Asking the Lord for a resolution for you Sammy and that the plan will be exactly what you need and in the meantime that He will be close to you, reassuring you that it will be okay.
Praying for you daily.
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sammy
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posted
Thank you for your continued prayers friends. Today is a very important day, I'm getting my specialty labs drawn at noon to be used for my IVIG appeal.
I am so nervous. I really need them to reflect how I feel, not good at all, so I can finally be approved.
So if you will, please pray for me today and pray specifically for my labs that they will be what we need.
Thank you!
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Sammi
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posted
sammy, I am glad you are getting your labs today. I pray that they will reflect how you are feeling and that you will be approved ASAP.
Do you know when you will get the results?
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Dekrator48
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posted
Praying, sammy!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Rumigirl
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posted
Keep us posted!
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susank
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posted
Sammy - still praying for you. Any news?
I think the GAM panel takes just a few day to get results back. The subclasses longer I think. (Because they are sometimes sent to different/ out of state labs and/or just take longer?)
Did your doctor sign for "partial" results to be released? So maybe you could get the GAM results back pretty soon - then wait a few more days for the subclass results?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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momindeep
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posted
Each day I pray for you and bring your case to the Lord...He is faithful.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sammy
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posted
Hi friends,
My home infusion nurse called me, we finally got some results back.
All of my immunoglobulin results were low.
My IgA was 9 (normal (81- 463) My IgG was 471 (normal 694- 1618) My IgM was 32 (normal 48- 271)
The IgG level was was I've been most concerned about. I knew that the the others would be low. There is nothing that can be done to treat them.
Now I need to try to relax a little and maybe sleep better now that I know that my results were consistent with what they had been in the past. It's hard to relax when I'm still waiting for important results and have to retest next week.
Then it will all be reviewed by the insurance company again...
Thank you all so much for continuing to pray for me through this long ordeal.
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Sammi
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posted
sammy, it sounds like you have a wonderful infusion nurse.
Your results say it all. What other tests is the insurance company wanting you to have done? Do you have to also repeat the ones above?
You are closer to getting your much-needed IVIG. Prayers continue for you!
Posts: 4681 | Registered: Oct 2000
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posted
That is "good news"... at least they can't deny that, right??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Dekrator48
Frequent Contributor (5K+ posts)
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posted
Sounds like you are getting closer to resuming your IVIG based on those results.
I will continue to pray for you.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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AuntyLynn
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posted
Praying that you will get everything you need, very soon.
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momindeep
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posted
Sammy...just checking in and letting you know that I am continuing praying for you. Hoping to hear from you soon. Trusting the Lord for a positive outcome for you.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Sammi
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posted
Me too! Hoping for good news soon!
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Rumigirl
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posted
We want good news for you ASAP! Hurry up insurance co!
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sammy
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posted
**Update 3/6/13***
No news yet, we can't appeal to the insurance co until all of my test results are back.
I'm due to have more blood drawn today at noon.
If you will please pray for me, I'm feeling very nauseous and having a hard time drinking anything. I'm looking and feeling dehydrated.
Being dehydrated will negatively impact my labs. I've only got a couple hours to really push some fluids and get my hydration back up close to normal. So please pray that I can get the fluids in and keep them down! (Currently trying Gatorade, may switch things around a bit as I feel the need...)
Thank you all for continuing to encourage me, pray for me and just be here for me during this difficult time. I want to give you a big thanks from the heart.
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Sammi
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posted
sammy, keep trying to hydrate. Is there anything you can drink that may also help the nausea? Or can you take something for the nausea so you are able to hydrate more?
Is this the last round of tests you need to have done? I hope so.
Prayers continue. I hope you feel better soon.
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poppy
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posted
If you have an IV line, could you do fluids that way? Lactated ringers or something?
Posts: 2888 | From USA | Registered: Mar 2004
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AuntyLynn
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posted
Green Coconut Water!
Praying for you!
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lax mom
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posted
sammy: why can't you appeal the Medicare denial? That's much easier to get overturned than private insurance.
Dekrator48
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posted
Praying for you, sammy.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Rumigirl
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posted
quote:Originally posted by lax mom: sammy: why can't you appeal the Medicare denial? That's much easier to get overturned than private insurance.
Yes, yes, yes! Through your state attorney general's office health bureau. Also, there is your state insurance co. But the AG's office is usually the best.
I can't believe that you still had to do yet more tests?!
I keep praying for good news.
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sammy
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posted
Unfortunately, I was not able to get blood drawn yesterday.
I got sicker and threw up all that I drank that morning. Then I couldn't keep anything down. I also spiked a fever 102. My whole body hurts, my muscles burn, all my joints hurt even where I didn't know I had joints! I have a cough and sore throat too so I'm pretty sure I have the flu.
My nurse said that she is on call on Sat so she will come draw my blood then. I thought that was very nice. Hopefully I will be better then.
Please please pray for me that I will feel better, and that my stomach will start working so that I can tolerate fluids and foods again.
Thanks so much!
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momindeep
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posted
So sorry Sammy. The Lord has your back. Will continue to petion the Lord on your behalf.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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AuntyLynn
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posted
MY BF had Swine Flu 3 years ago. He couldn't even keep down water. I gave him coconut water.
Not coconut milk - coconut WATER found in the juice aisle or in "natural sports drinks"/juices.
He took small sips every so often through the night, and by morning, had consumed nearly a pint of the coconut water (with its natural electrolytes) ... he started asking for toast and tea.
Praying you will get the help you need, and soon!
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Sammi
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posted
sammy, I am praying that you feel better soon.
Your nurse sounds very nice and caring. I am glad she is on your side!
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posted
I am so sorry you are sick!!! GRRR!! Hope it will be short-lived.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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MADDOG
Frequent Contributor (1K+ posts)
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posted
Hang in there Sammy!!!!
MADDOG
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Silverwolf
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posted
<<<<< sammy >>>>>,
We will continue to pray, you've been in our tho'ts.
Hoping you get to feeling better soon,and are able to get all the test results in,to get the help you need.
<<<<< sammy >>>>> extra hugs...it shouldn't have to be this difficult.
love and prayers from Silverwolfi and TxCoord
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Haley
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posted
Praying Sammy.
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momindeep
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posted
Up for sammy. praying daily for you with concern and hopefulness.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Dekrator48
Frequent Contributor (5K+ posts)
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posted
Still praying, sammy!
May God sustain you as only He can. Love and hugs!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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momindeep
Frequent Contributor (1K+ posts)
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posted
I was praying for a quick fix for your situation Sammy, but I see that that isn't forthcoming.
Doesn't mean that the Lord isn't faithful or not working for your behalf...He is right there with you through this trial...to help you endure.
So, today I am asking the Lord to hold you up and give you the strength you need to run this race to it's conclusion. His grace is sufficient and I ask Him to handle you gently and to remind you of His promises.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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sammy
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All of these are even a little lower than last week.
I called my doctor's office earlier today to ask about the appeal since I had the second set of labs drawn on Sat. The nurse wasn't very encouraging on the phone. I actually cried as I hung up.
My doctor tried talking them into letting him have another peer to peer review but they are making him do a full paper/letter appeal. The office is trying to make it urgent since I am so sick and need it ASAP but they don't know if it will be expedited.
Please pray that the appeal will be expedited and that they will approve my IVIG this time around.
I need to start on the IVIG soon so that I can have my surgery scheduled in April. This is very important.
Thank you!!!
Posts: 5237 | From here | Registered: Nov 2007
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
sammy: fax the labs to the insurance co appeals office yourself if you have to, with a note explaining the severity of the situation.
While you are at it, fax the same thing to Medicare.
I'm telling you from experience...it is soooo much easier to get an appeal approved from Medicare.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Sammi
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posted
I agree with the others about faxing your results. I also suggest contacting the CEO of the insurance company. This worked for me when they were going to discontinue IV therapy.
Is there any way you can go back on the insurance you were on before?
I am praying that you are approved very, very soon!
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susank
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posted
Sammy this is nuts. So sorry.
You very clearly and obviously 1. Have CVID 2. Respond to treatment - ie Gammagard 3. Seriously decline when deprived of it
What possible reason could exist for you to be denied coverage by the insurance company?
Why, in the interum, did you not qualify for the Baxter program to help those in situations like yours?
The peer to peer means your doctor presenting your case to other doctors? How many? Chosen by whom? Paid for by whom?
How could any doctor well versed in immune defiency diseases could go on record supporting your denial?
If this does not get resolved quickly then you need to be contacting some real higher-ups - like your Congressmen. CNN etc.
Remember that IVIG treatment is not unknown to President Obama - in that he enacted measures to cover supplies for Medicare patients so they could afford their IVIG.
Praying for you still.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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Dekrator48
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posted
Praying fervently for you, sammy!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
MADDOG
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Member # 18
posted
Sammy do you have Anthem blue cross? They turn down anything that isn't on the Walmart 4 buck list or free a Meijer.
I will switch back to regular Medicare next year. Then i will also have medicaid to fill in the co pays per Obama care.It begins in 2014 and the Ohio governor excepted the federal plan.Imagin that!!!
So next year I will be in surgery for both shoulders.Getting my hip re-evaulated and mabey a hip replacement finally.
And i will try to get to doc R. in ohio a actual lyme literate doctor,that is 60 miles not 450 miles away.
MADDOG
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momindeep
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posted
Still on deck and praying for you.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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payne
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posted
sammy, for give me in my ignorce of your fight.. As, you struggle with ins. and health, We pray, and Ask The Lord to bend an ear to Your Voice speak to HIM, He is Our Shepherd.. we His Flock... "O God, be merciful to me! For my soul trusts in You; And in the shadow of Your wings I will make my refuge, Until these calamities have pass." Psalm 57:1 Soon, we ask you Oh, Mighty send angels to arrange sammy's needs.. AMen
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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Dekrator48
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posted
Praying, dear sammy!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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lax mom
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susank
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posted
Sammy - are you OK? Worried about you. Can you please check in - even if a brief note?
Praying for you!!!
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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nonna05
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posted
Praying for you,,,,,,,,,,
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momindeep
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posted
I am asking the Lord to end this exhausting ordeal for you today. That it is finished and you can move forward.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Sammi
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posted
sammy, how are you doing? Please let us know when you can.
Prayers continue for you.
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Dekrator48
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posted
Lord Jesus,
Please hear our cries for help for our dear sammy.
Please rescue her from all the trials that are weighing her down. Provide her with new life... restored health that glorifies your Great Name.
We know that all things are possible through You, Lord.
We put our trust in You.
I pray this in the name of the Father and of the Son and of the Holy Spirit. Amen
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
I am at the throne sammy...and will continue to be so on your behalf. Thank you Lord for the opportunity to pray for sammy. May You reveal Your glory through her trial.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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