LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » General Support » Hmm Another form of VA wait listing?They're pulling this on TrekC'

 - UBBFriend: Email this page to someone!    
Author Topic: Hmm Another form of VA wait listing?They're pulling this on TrekC'
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196

Icon 1 posted      Profile for Silverwolf     Send New Private Message       Edit/Delete Post   Reply With Quote 
Jus' Silverwolfi here,Hi <<<<< LymeNet Family >>>>>,

TrekC' has been on the phone with a VA call center employee. Trying the 'Special Number they gave him, if he didn't hear from Choice card program in 2 wks. time. Well the deadline came and went, he called and got a Specialty call center individual.

His request, from the 3rd week of Nov.,for a Cardio' consult, had not been put in yet. And never mind that he is missing a continuing life long necessary medicine treatment.

His Doctor who issued the medicine necessary life long, WILL Not re-issue it,until he gets the Cardio Dr. appt.

So the Specialty group had actually changed it from Emergent to a non-emergent routine request, and it is another two weeks with out important medicine -that is supposed to be life long.

Well, we call that another form of * Wait Listing* . So again, he is writing to his Congress persons liaison, he has signed all pertinent permission forms. And is working on a letter that is already four pages long ,and not done yet.

Please keep us, and his health in tho't and prayer. We know many prayers have gone up on pour behalf already.Thanks so much,know you are appreciated greatly.

Jus' that Silverwolfi again

[ 12-14-2016, 09:52 AM: Message edited by: Silverwolf ]

--------------------
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: 3467 | From SE Idaho | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196

Icon 1 posted      Profile for Silverwolf     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi <<<<< LymeNet Family >>>>>,

I edited the above post, somewhat to try and clarify the situation a bit more.
I seem to be leaving out words, I went back and looked...so I hope it is clearer now.

At this point it doesn't look like Trekc' will be able to see a Cardio' an earlier than the third wk. of January.

He does have an appointment next week with the Dr. who prescribed the lifelong meds. So he will see what can be done from that side of things.

Somewhere in all of this we'll have more traveling to do for family situation. But at least not until after the Holidays.

Thank you to those who continue to pray,and to the Lord our Creator who is seeing us thru these stressful times!

Jus' Silverwolfi here

--------------------
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: 3467 | From SE Idaho | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
randibear
Honored Contributor (10K+ posts)
Member # 11290

Icon 1 posted      Profile for randibear     Send New Private Message       Edit/Delete Post   Reply With Quote 
let's hope this administration can do something about this.

--------------------
do not look back when the only course is forward

Posts: 12262 | From texas | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196

Icon 1 posted      Profile for Silverwolf     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi <<<<< randibear >>>>>,

We are hoping the same thing,the end of next we will have been fighting to get his proper disability benefits for a full seven years.

And now this mess w/ the heart issue, TrekC' sent his long letter in to the Congresspersons liaison and was given yet more forms to fill out.

Seems, they literally must have permission from him, to pursue this issue with every group even remotely involved in anyway.It is to the point of ridiculousness. But if you don't play 'the game' their way you wont get any help.

Trouble is it is not a game,TrekC's very life may be at stake.We've already had a friend die while he waited,and waited,and filled out forms and tried to live his life,and care for his family.

It is yet another uncaring govt.system,I am struggling hard not to get overly angry, and to help TrekC' try to remain as calm as possible.
Stress is never good with heart issues.

Not saying more because of family situation,and likely spies watching what we type here.

Jus' Silverwolfi

--------------------
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: 3467 | From SE Idaho | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
It's beyond ridiculous and it is also inhumane.

[group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94483 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196

Icon 1 posted      Profile for Silverwolf     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi <<<<< Lymetoo >>>>>,

It is inhumane,and as TrekC' says they should start by firing the ones responsible for all this wait-listing,and methods to make our Veterans and their families wait and wait and.....

This is down right dangerous,it is horrifying. We don't blame the one Doctor who issued the meds he is to be on permanently.

That Doctor is stuck as well,if they re- issue the prescription and there is the slightest issue,that Doc' becomes responsible.

Meanwhile, TrekC is having trouble sleeping, because the meds issue is making his sleep and insomnia issues worse. They don't want him to take magnesium either,so most nights he wakes with the restless legs jerking,and spasms.

But they are not giving him his info' his records from the tests,and so on. Likely they've been conveniently lost,sadly it has happened before.

He at least finally got some sleep last night and we both are thanking the Lord for that!!

It is horrible and I wonder how many more Veterans are going to die way to soon, while those in charge, make excuses?

Thanks so much for the reply!

We are trying to have a Merry Christmas and Happy Holiday time regardless of all these issues.

Jus' Silverwolfi here,and TrekC too

--------------------
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: 3467 | From SE Idaho | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
No magnesium?? What on earth??

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94483 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196

Icon 1 posted      Profile for Silverwolf     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi <<<<< Lymetoo >>>>>,

Prescribing Doc' didn't say why, just 'discontinue until you check w/ the Cardiologist...' no other info'. He was taking OTC slow mag' [VA mails this to him, and it has stopped coming].

It is very very odd, because Magnesium can prevent a whole host of heart related problems, among many many other uses.

And checking on his new heart med, doesn't make it clear, if there are any issues,most say side effects,cross reaction are unusual to rare.

So we still find this beyond weird, and they still haven't bothered to tell him a DX,after saying,that it isn't Unstable Angina, but Cardio Docs' said at the VA Hospital ER it was Unstable Angina.

I just keep praying for TrekC's heart and general health, he is very precious to me.

Thanks for the question and further reply, we are quite puzzled by this whole mess.

Jus' Silverwolfi

--------------------
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: 3467 | From SE Idaho | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by Silverwolf:


It is very very odd, because Magnesium can prevent a whole host of heart related problems, among many many other uses.


-
That's very scary. [Frown]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94483 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
TrekCoord
LymeNet Contributor
Member # 48888

Icon 1 posted      Profile for TrekCoord     Send New Private Message       Edit/Delete Post   Reply With Quote 
[Gary Owens of "Laugh-in" voice over] But wait! There's more!

So while we were out looking at Christmas lights Triwest calls ]at 722 p.m. local] and leaves automated call for me to call them back.

So dutifully this morning right after 8 a.m. I call. Got right through! Yay.

Only to be told that scheduling will call me in "3-5 business days" to schedule me with an outside cardio.

Uhhhh, 3-5 business days? They have until the FRIDAY BEFORE CHRISTMAS weekend to schedule me?

And the adventure continues . . .

--------------------
I still have a good time wherever I go!

Posts: 138 | From Lost Wages | Registered: Oct 2016  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
[cussing] [rant]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94483 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091

Icon 1 posted      Profile for Rumigirl     Send New Private Message       Edit/Delete Post   Reply With Quote 
Isn't there any way that someone can get that this is life-threatening and can't wait??!! Did you call your congressperson? That sounds like it would be faster than a letter. What a crazy bureaucracy!

I am not a doctor, let alone your doctor, but if I were in your shoes, I would take the magnesium. But this is not medical advice.

Posts: 3643 | From around | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by Rumigirl:


I am not a doctor, let alone your doctor, but if I were in your shoes, I would take the magnesium. But this is not medical advice.

-
Same here.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94483 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196

Icon 1 posted      Profile for Silverwolf     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi <<<<< Lymetoo,and Rumigirl, and others who may be reading this >>>>>,

TrekCoord,sent in his letter, the Congress person and their VA Liaison,are handling many cases at once. So TrekC' complies to make their job as easy as possible.

He sent in his letter and is waiting one of the permission forms. As soon as that gets in they can try to help.It goes slowly and they are as frustrated as many of our Vets and their families.

We found it odd, that they wanted to have him stop the magnesium. It is not a good situation.

Jus' Silverwolfi and TrekC' too

--------------------
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: 3467 | From SE Idaho | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091

Icon 1 posted      Profile for Rumigirl     Send New Private Message       Edit/Delete Post   Reply With Quote 
Just guessing, but I imagine that they told you to stop the magnesium, because they don't know exactly what is going on for you. But more to the point, they likely know very little of the effect of magnesium!! Crazy, but likely true. That is true for most doctors, other than holistic doctors and LLMD's. Ridiculous.

When my mother was in the hospital after heart attacks years ago, I wanted the doctors to rx IV magnesium for her. I brought in sheaves of studies about how it helps the heart after heart attacks. The doctor dismissively wouldn't even take or look at the studies, nor would he rx the magnesium.

I should have simply slipped her some oral magnesium. But that was many years ago, plus, she was throwing up a lot. Sigh, doctors . . .

Posts: 3643 | From around | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
I know .. and if they do know, it doesn't keep them in business.

I'm pretty sure I've been given IV mag for my heart while in the hospital.

Hopefully, they are doing that now???????

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94483 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
TrekCoord
LymeNet Contributor
Member # 48888

Icon 1 posted      Profile for TrekCoord     Send New Private Message       Edit/Delete Post   Reply With Quote 
And wait! Yes there's more! I just got off the phone with cardio at the VA hospital and they now have an opening on Jan 4 at 830 in the morning.

She said, "Well it's till beyond the 30 days do you want it?"

I told her I might as well as there was no guarantee that Choice would find a cardio appt any sooner.

Yay me.

--------------------
I still have a good time wherever I go!

Posts: 138 | From Lost Wages | Registered: Oct 2016  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
You should have said, "Well, it's better than kicking the bucket while waiting two months for an appointment!"

[rant] [cussing]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94483 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to the Terms and Conditions.

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.