Topic: Txc's/Our Situation update- reply # 24- June 9
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Lyme family >>>>>,
Well after the local VA P.A., scared us to near panic...in their 'wisdom' VA has decided not to start further testing,and surgical decisions until the first week in April.
We will go to SLC VA Hospital then,and await their findings. Meanwhile we get to sit about doing next to nothing,and try not to be overly tense.
It is still serious, but the local P.A. for VA here had us feeling if TxC' sneezed wrong, breathed too deeply, or even passed gas he was a goner.
The Vascular folk said,no, just be careful,no lifting, nothing exciting...stay on your pain meds, wear seat belts, avoid car crashes if possible, that sort of thing.
We'll know more in April...at least this gives us a chance to take care of a few things...we'll see how it all goes...and report in as we have more news.
It is still scary,but it helps to know we have Lyme family waiting and praying along with us!!!
Thanks again for the support, prayer-ing and caring.
Jus' the Silverwolfi [hopefully getting over that bilious green stuff ]
-------------------- 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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posted
Good... we'll just cover you two in prayer!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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momindeep
Frequent Contributor (1K+ posts)
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posted
Alright, sounds like you have a plan. Will pray for you two to have peace and patience.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< Lymetoo,momindeep and all prayer-ers and care-ers >>>>>,
Thanks so much for the replies and prayer and caring!!!
They've given us a little more info [after 3 calls yesterday ].
Evidently, when this happens, a big concern is that behind the knees on a knee replacement [TxC' had both replaced -May, Oct. 2010-] anyeurisms can occur. So he will be having testing on abdomen and behind both knees.
They think the abdominal iliac anyeurism may have been there awhile...but it may not be as large as they tho't, could be larger too...ahhh ambiguity!...
Patience and staying stress free is key. Course we also have a second argumentation coming up over his disability and a meds bill, they reversed decision on and now want us to pay w/ our very limited funding.
I'll check back in later...thanks again!
Jus Shakey 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: 3581 | From SE Idaho | Registered: May 2006
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I will also pray for the two of you!
Big 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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posted
and prayers to you both!
Posts: 238 | From Jackson, TN | Registered: Mar 2010
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< Dekrator' and TnFlowerChild >>>>>,
Thanks for the prayers and hugs too, we are trying hard to be patient and not stress.
We appreciate the support so very very much,thanks to all of y'all!
jus' Silverwolfi and TxC' 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: 3581 | From SE Idaho | Registered: May 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
anyone know how this ended? are they ok?
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
ok i seaarched and see they are havig a really ruff time right now-now so much knee related i think
we all go thru so much
prayers to them
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I don't think they are doing well. TXC had surgery for a vascular abdominal aneurysm and it was successful but I think there are other problems too.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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momindeep
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posted
I am praying still and will continue to do so. Lord help them breathe.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< lpkayak, Lymetoo, momindeep, and any other LymeNet Prayer Warriors >>>>>,
Thank you all for the caring and concern...
We feel blessed that TxC' came thru the Aneurysm surgery itself[Apr.11th] well but he had a heart issue occur after surgery.
-He now has a *Left Bundle Branch Blockage* which causes an inverted " backwards " heart beat w/ arrythmia [discovered in ICU after Apr.11th surgery ]
...along w/ a Right Bundle Branch Blockage[discovered early 2010,supposedly benign].
The *LBBB* is causing problems TxC' is extremely exhausted,and wheelchair bound yet again.
-He is also having severe gout and arthritis flares, making walking attempts, typing,and eating etc. very painful.
And of course they don't want him to take anti-inflammatories,because his kidney function has slowed And he has become diabetic.
--We are now awaiting news of his appointment for a -heart catheterization/angio- procedure to find a solution to the heart issues.
It was to be toward the last part of June,but they had a clerical error...so we are still waiting for news on when it will be done.
--- So in their wisdom, the county here, has decided I should be on Jury duty the last two weeks of June[ aprox. when TxC's heart cath'/angio in Utah will be done [we think??!].
The problem is,w/ my own disability,from Lyme and Co's,and being my TxC's only caregiver...I cannot leave him alone...w/ the heart issues, arthritis flares etc.
It is severe enough that he, TxC,' cannot get food into a microwave, or even -clean him self after a BM-...
[-we've talked because I don't want him to feel embarrassed-...we have to explain this to the jury selection head as well. ].
We have no one here that can help watch him clean him up ,if they make me do Jury duty.
The Jury form states that the only exemptions from jury duty are for any one over 70 yrs.old, a deferment for aprox. a month, or proof/certification from a Dr. of disability of the selected person.
The last/only certification letter I have was from the ND/and overseeing MD I had in '06. We lost our insurance['06] and Dr/Nd in early '07'.
I have been at free clinic since,and am now seeking a Doctor... in SE Idaho,it is difficult to find Drs. [who are LLMds and...] who will take one w/o insurance.
We are writing a letter of explanation for my request to be excused from jury duty. But I don't know if it will be enough.
If they choose to refuse my exemption request,I would have to do the jury duty,or face a $300 dollar find and/or 2 months in jail.
It may seem I am concerned over nothing but so often we hear... 'You don't look sick...you look so healthy'... etc.
Folks who say that...don't see us having severe migraines, bouts of IBS-diarrhea, tripping over our feet for no reason... or seizure like symptoms [unless it happens to occur in front of others].
Sorry this update is so long... I am concerned...TxC' can't stay alone, I cannot sit on a jury for hours and days etc. I just am not strong enough...
We are going to send the letter in w/ the Dr's./ND's letter from '06, and info' on TxC's issues/ upcoming appts. and surgical procedures and our trips to Salt Lake VA hosp'.etc.
Thanks again for asking how we are doing and for the prayers... will try to update when we know more.
-------------------- 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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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Me again...sorry this was all so long...I am still fighting,sinus infection issues and tiredness since the statin poisoning issues in March [ I refuse to take them ever again]!
I am not gaining any strength...but trying to be patient...it seems I am relapsed...so tired,achey right leg drags...headaches, Migraine type...
I don't want to sound whiney...just tired weary and wary too... it sorta hurts to even smile right now...
Jus' the 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: 3581 | From SE Idaho | Registered: May 2006
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momindeep
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Member # 7618
posted
Silverwolf...I just cannot even imagine. Try not to worry about jury duty overlymuch...I am sure your explanations will be sufficient...I will pray that they will be sufficient.
I will continue to pray for all these things that are plaguing you both and that you can rest somehow both mentally and physically.
I will be praying.
Sue
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< momindeep >>>>>,
Thank You for the prayer and kindness!
I know that the stress isn't helping either TxC' or myself, and the symptoms relapse rather strongly in times of stresses.
We are finding it difficult to stay patient and would like the tests and procedures to be overwith for TxC'.
And for me to be able to find some medical help to ease these Lyme and Co' issues.
The VA local clinic up here, was going to have TxC' tested for Lyme...but suddenly changed their minds,as VA [federal] won't recognize Chronic Lyme.
We've done enough research because of my problems/illnesses to be pretty sure he has the same problem I do.
Most likely the severe arthritis flaring is Lyme based,along w/ many of my TxC's other issues.
I am so glad that LymeNet exists...don't know how we'd cope w/o the support from this board.
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: 3581 | From SE Idaho | Registered: May 2006
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Silverwolf...I will ask the Lord to provide a way for you and TXC...and that you can trust that He will indeed do just that and His provisions will exceed even beyond what I pray for for you both.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
Very sorry to hear all this, silverwolf! When it rains it continues to flood.
You shouldn't have trouble getting off jury duty as long as either YOU or hubby have a note that you are disabled. I would take notes for each of you. Reasons why you are disabled and reasons why YOU have to be there to care for your husband.
I had to get off jury duty once and I looked very healthy, believe me.
Will continue to pray for both of you.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< Lymetoo,momindeep,other pray-ers too >>>>>,
Thanks for the prayers,and the tho'ts.
TxC' helped me w/ a letter for the Jury commissioner,and,I'll present a copy of the one from my Dr./ND in '06. We lost insurance after that and the Dr./s/ND.
Free clinic cannot help me further {I'm well beyond when they were supposed to help], nor could they have helped w/ a symptoms letter for LD etc.
So what we have will have to do...[TxC is giving them *info on his being disabled...they can check *thru the VA. As momindeep said...we are praying it will be sufficient!
Still praying for peace,not to let this bother us too...it seems to be an obsessive tho't for me w/ the Jury summons. [Perhaps more symptoms from the LD and Co's??].
Tommorrow before we head to SLC for more of TxC's tests and appts. We'll copy a couple things and send the letter/and info' off to the Jury commissioner. It is up to the Lord then.
We've had some family struggles/issues of late..and that has worsened the stresses[tho' the stress issue is lessening.
Our families are all out of state. Some in Washington and Oregon,and some in Southern US.
And we've learned that TxC's Uncle is in a bad way out in Tennessee, brain tumors between ear area and brain,and tremors.
It seems that problem-things keep coming in bunches, it rains and pours.
One friend used to say... Some folks get a few storms... Wolfi and TxC' get blizzards.
I know God is with us...even in the worst of the blizzards... It is just convincing the brain what the heart already knows!
Will check in when we get back..in a few days...
Just 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: 3581 | From SE Idaho | Registered: May 2006
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Will pray that all goes smoothly for you two and your brain will be convinced of what your heart knows...(dang, I have that same problem, so can totally relate).
Thanks for keeping us updated...and giving us particulars to pray for.
God is good.
Sue
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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sammy
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posted
Hugs Silverwolf, I'll be praying for you and TxC.
Posts: 5237 | From here | Registered: Nov 2007
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map1131
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Member # 2022
posted
My goodness what a rough road you two have had. I bet being afraid to breathe or anything stress everyday beat you both down.
I hope things start turning better soon. Take care of you and yours first. Don't take on everyone else's issues, you guys are carrying more than your load.
Prayers coming your way. Better days ahead.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
Quick 'update'...we didn't get to go to appts. so they've been rescheduled.
TxC' did get a phone interview w/ one of his Drs. They are putting him back on anti-inflammatories. He will have to have more frequent kidney checks.
Already he is being able to get up much easier and walk a little, Tho' he keeps cane/walker w/ him.
We are still going to check about a connection w/ statin poisoning tho',especially after what I went thru in March [and continuing].
We're concerned of the anti-inflammatory meds masking statin damage. We'll see in a few weeks what they say. I know I wont be taking more statins. I hope TxC' doesn't need too.
---- Jury duty situation??? Anyone's guess until they call/send letter...we sent them what info we had and asked for me to be excused from duty.
Still awaiting the time of appt. for TxC's heart catheter procedure. And He will have a sleep study done in about a week.
Meanwhile I am trying to stay as well as possible. Wednesday, I was feeling very ill and weak, w/ respiratory issues,raging headache, and urinary tract issues. Still don't feel the greatest... doing what I can.
Thanks for keeping us in y'alls tho'ts.
Just 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: 3581 | From SE Idaho | Registered: May 2006
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momindeep
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posted
Were with you Silverwolf and TxC...thanks for the update.
Continuing prayers for you both too.
Sue
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Silver and Tx hang in there. It will get better. Amazing how toxic those little pills they feed us all the time are.
And the price we pay for them to make us more toxic?
I hope you find some better days ahead.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< momindeep, map1131, various Prayer Warriors of LymeNet >>>>>,
Thanks for keeping us in tho'ts and prayers!!
This weekend TxC' has a Sleep Study, next week...well ????? ... TxC' calls it logistics issues...
We were to have had a heart cath' done for him...but there are issues w/ us getting to Salt Lake safely right now.
There may be a way to have it done in our area [great hospital five minutes away ] but its a fight to get VA to Fund it in a non Va facility.
If we don't hear something from local clinic tomorrow a.m early,Salt Lake VA Cath' procedure will be canceled and remade for a later time.
***Meanwhile, I have an excused letter from Jury duty,so I can continue to care-take for TxC' and try not to get to stressed myself.
Fighting migraines, leg issues and weakness right side etc. I hate Lyme and Co's...
Ah well, at least jury duty is one less obstacle for me to have to deal with!!!
TxC' is slowly getting some strength back, to slowly for his liking...but a little better each week. Will have to watch kidney function like a hawk for him.
After sleep study,he will start a new to us anti-inflammatory med' that shows promise for Diabetics...we'll see.
Thanks again for keeping us in tho'ts and prayers... more things on the horizon...but having support here at LymeNet helps!!!
Jus' Silverwolfi and TxC' 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: 3581 | From SE Idaho | Registered: May 2006
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Just me again...
Well it looks like we are going for the heart procedure this next week...don't know if I'll be sleeping in a corner,the hospital room the car ???
We've been told so many things that are at opposite and odds... who knows guess we'll see when we get there.
So it is sleep study tomorrow evening, and heart Cath' on Thursday...
Thank you to those who are praying for and thinking of us!
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: 3581 | From SE Idaho | Registered: May 2006
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Don't worry about where you will sleep, the Lord will work it out for you...He worked out jury duty, right?...and look how worried you were about that.
I am praying for you and will ask the Lord to provide for you both and that He will go before you and smooth your way.
God is good.
Thanks for keeping us in the loop.
Sue
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< momindeep and other Lyme prayer Warriors >>>>>,
Thanks for the prayers and support!
Leaving for the sleep study ,SLC area in a couple of hours...curious what TxC's tests will show.
Then Thur. the 16th will be the heart Cath'[SLC VA med center]... -prayers it goes well and TxC is safe- no bleeding, infections,pain, or 22 hr. stays in ICU like happened to him in April.
Momindeep you are right, God can do anything!!! So we are praying He supercedes Federal VA-Govt' policy as to where I stay,if TxC must stay an extra day or two!
TxC'wants me there,the Cardio-Case-Manger/Dr. says I can stay so I will.
We'll update when we get back from the Sleep test hopefully tomorrow!
Thanks again for prayers and encouragement!
Silver-sleepy-wolf and TxC'Trekker
-------------------- 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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