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» LymeNet Flash » Questions and Discussion » General Support » Could this be 'Difficult Patient' label Black Listing/

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Author Topic: Could this be 'Difficult Patient' label Black Listing/
Silverwolf
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Hi <<<<< Lyme family >>>>>,

Within about six weeks now, two different doctors [in different towns]have refused to take me as a patient.

One treated me at a prior time a couple years back, but disagrees with 'Chronic Lyme'. The Second Doctor to refuse me,we did not explain anything [about the Lyme disease etc.].

I am willing to pay cash,as we have no insurance for me. I need a prescription from a Doctor for the diabetic medication, Metformin .

I have test results to prove I am diabetic [tho' my last blood test was in March of 2011].

We also tried a *Naturopathic team* in early December 2011, who agree w/ most of my tests but 'do not feel they can put a name to my condition and symptomology'.

*They* suggested some minor diet changes and expensive supplements etc. But cannot really help me.

In 2006, before we knew the dangers of mentioning 'Chronic Lyme' we said something to a young insurance salesman... and we've not been able to get any insurance for me since then...we have tried.

TxCoord at least, is covered by VA medical,and was able to get some SSDI coverage. I am not eligible for SSDI or SSI ...because the small amount that TxCoord is bringing in from his SSDI is 'too much'.

We would need to have less than $1100 and it would be prorated. We make less than $1500 and over half is going for housing payment and Utilities.

So I sit here in need of a $4.00 a month prescription,and cannot find a doctor who will help. My time is now used up for free clinic,and

the only slide fee in area gave me the wrong meds [the statin mess from March 2011] even after being warned I had a serious reaction in past.

[obviously, I now check any and all meds and supplements on line now to see what they are... medication names can seem so innocent.]

I really do wonder,if I am being labeled a 'difficult patient' and blacklisted... perhaps many medical professionals would just rather we/I quietly die somewhere???

And no, we have not given up, I am not suicidal, neither TxCoord nor I,am/are asking for Metformin to be shipped to us from LymeNet folk.

Money is tight, but you'd think if we could come up w/ some cash payments, a Doctor would be willing to help????

Maybe in Idaho, the Hippocratic oath is a joke perpetuated by hypocrites ? ? ? ?

We are not insolent, suit happy, ornery, mean spirited folk here... I do not go to Doctors/clinic if it isn't absolutely neccessary...

Nor do we go on-line writing negative complaints publicly against any Doctor or medical group.

I try to watch carefully what and how I eat... and so on. TxC' and I feel that something else is at work here...much more than meets the eye.

Oh Yeah, if there is still SS available in seven years, I will supposedly qualify then...

Just the Puzzled,wondering what is up Silverwolfi and TxCoord

[ 01-20-2012, 11:46 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: 3558 | From SE Idaho | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Silverwolf
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WOW...am I on a BLACKLIST here too????????????

Nothing...but a PM and the Link in the PM does not work....


WOW REALLY??????

I am beyond puzzled... we are doing what we can to treat this so it does not become life threatening...

LymeNet is an important part of helping us to treat all this mess...

Honestly both TxCoord and I are wondering why we don't get hardly any replies on the majority of our posts...

We try very hard to remain upbeat in a difficult situation...we both watch others get several replies...to many posts...

but we truly are puzzled...and yes I am hurt , I consider the folk here family...we have no one else to turn to.

Should we just fade away????

Sincerely Silverwolf 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: 3558 | From SE Idaho | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Silverwolf
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Just me again, ya know sometimes even one or two replies can make a huge difference when someone is in pain,and afraid...

And I do try to come in and leave a message for others now and again...when I can think a bit thru the brain fog...

We are not asking for 100's of replies...

Just one or two... it can make all the difference...

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

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randibear
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Hon hubs tore muscle in his lower back around themscar tissue from wounds in nam. He is totally bedridden and has been for two full weeks plus my headaches and tmj. Just haven't been checking in as much. Am trying to figure out how to take care of him.

Sorry you are going through this. Sounds like you should just pack up and leave that state. Tough I know but it sounds strange to me. I'm all out of suggestions

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

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GlitchyMomma
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I'm a newbie decided to read this post today. Sorry you guys are having trouble.

I don't want to be labeled as crazy either, and it's kind of scarey to think there may be some 'blacklist' out there! [Wink]

I think your issue is more common than you think. We only have 1 LLMD in our state, and I'm pretty sure my very progressive regular internist would not put her license on the line to treat Lyme.

I'm driving out of state for my LLMD appt.

Try not to think that they have blacklisted YOU, instead, you need to blacklist THEM.

Their philosophies of treatment do not seem complimentary to successful Lyme eradication.

Have you already done a thorough search of LLMDs within drivable distance? I'm sure you have, but it was the only other thing I could come up with.

Support hug,
GlitchyMomma

--------------------
GlitchyMomma
Hashimoto's Thyroiditis dx July 2003
Cholecystectomy March 2010
Vit D3 Deficiency 2011
Progesterone Deficiency 2011
Adrenal Fatigue September 2011
Labcorp IgG 23 Positive, IgM 39 Positive, IgM 41 positive January 2012

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Carol in PA
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I sent you a link.
Links in the pm's are not "activated."
You need to copy and paste it into a browser.

Silverwolf, if people are not answering, they may not be able to think of something to say.
You're in a lousy situation, I know.
I'm sorry.

[group hug]

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Keebler
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-
Ditto to Carol's:

"Silverwolf, if people are not answering, they may not be able to think of something to say."

I, too, have no suggestions. I know the "difficult patient" label on the inside cover of my medical file has seemingly transcended the ether (via computer?) to doctors whom I would have thought had no way to trace past doctors' simplistic and erroneous conclusions.

"Difficult Patient" is truly code and I would bet most of us have that in our paper medical and computer medical files - transferred easily between doctors.

Other than the fact they really can't help me anymore, but that label had me just stop going to doctors. (No LL doctor access, anyway).

But for normal stuff, along with my ND, I'll figure it out. I have no way to get to a doctor, no way to tolerate the sensory challenges there, no doctor who gets it, anyway, no drugs that really work for me . . . so I've found my alternate universe.

Yes, herbs can be expensive and I've gone without things that really did help. But, there are some less expensive sources, especially for blood glucose support.

For blood sugar problems, Gymnema Sylvestre has been fabulous for me. Andrographis also really keeps mine balanced.

Garlic, even just raw garlic, might also be a helper.

You likely have a glucose test kit. I've not officially been dx with diabetes but it's been at 130 a few times so I think it's important to monitor it.

But I can no longer afford the test strips. Sometimes, though, a company will send me some. With your diagnosis & need for daily testing, though, I hope you can get the test strips at least.

I'm amazed they are so expensive but then they give away the meters and this is how they make up for that.

I'm so sorry for the position you are in. Medical care in our country is pathetic, even in the shadow of shiny, fancy equipment and the air of arrogance on doctors' parts, misplaced confidences from patients to doctors - and the business of insurance.

I do hope the sun stars shining for you soon.
-

[ 01-20-2012, 02:33 PM: Message edited by: Keebler ]

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Keebler
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-
For a real eye opener to those new to the code label "Difficult Patient" a Google search:

http://www.google.com/search?q=Difficult%2BPatient&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a

Difficult+Patient

Now, take a good breath for the next step:

http://www.google.com/search?q=Difficult%2BPatient%2C+insurance&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a

Difficult+Patient, Insurance

-------

YOUR FILE ? The next time anyone is at their PCP, try to get a peak at the inside cover of your file / chart. I'll bet more than one will see written in a medium density Sharpee: that horrible code

-------

For our own safety, really, and to know how to make wise decisions regarding which doctors we seek out, this education is vital for all who are not really "difficult patients" at all but who have "difficult" cases.

But, this label is not at all about that, our cases have been dismissed and we have been reduced to labels.

It's important to find doctors then who don't follow that old boys' club garbage.

I did. My PCP may not know everything I wish he could but I've never felt he bought into that label that precedes me. It took years to find someone who could think past that. Two out of about twenty, I'd say.

As for how to keep insurance companies from using that against us, I'm in the dark, Even with medicare, it's really no help to me at all so I'm on my own.

You might call the OMBUDSPERSON who works with your STATE INSURANCE COMMISSIONER or similar office. They are supposed to be for the public.
-

[ 01-20-2012, 02:28 PM: Message edited by: Keebler ]

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Keebler
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-
As you have the prescription for the Rx to help with glucose management, but you can't get insurance coverage (right now), might the pharmaceutical company for that drug help out?

Many do have programs but I'm not sure what they are called. You could just Google the company, find the direct number for their patient liason and ask.

Or, another approach:
------------------------

http://www.vitacost.com/Natures-Answer-Gymnema-Leaf

Nature's Answer Gymnema Leaf -- 1 fl oz $7.00

Contains: Gymnema Leaf Extract

Other Ingredients: Vegetable glycerin and purified water.

-------------------------

http://www.itmonline.org/

ITM - Search: Diabetes - many articles about Chinese medicine's approach

----------------------------

http://oneearthherbs.squarespace.com/important-herbs/gymnema-gymnema-sylvestre-.html

GYMNEMA (Gymnema sylvestre )


http://oneearthherbs.squarespace.com/important-herbs/garlic-bulb-allium-sativum.html

GARLIC BULB

-------------------------

http://www.google.com/search?q=Gymnema+%2C+Townsend%2BLetter&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a

Some very good articles from a Google search of:

Gymnema, Townsend+Letter

-------------------------

http://www.ncbi.nlm.nih.gov/pubmed?term=Gymnema%20sylvestre

PubMed Search of medical abstracts:

Gymnema sylvestre - 151 abstracts

Andrographis, glucose - 17 abstracts

Garlic, Glucose - 143 abstracts

-------------------------

http://www.vrp.com/dispatcher?search=Gymnema&type=ARTICLES&sortOrder=RELEVANCE&pageSize=10&page=1

Gymnema Sylvestre - Six articles relating to diabetes management from Vitamin Research Products. All their articles have excellent third party research citations.

----------------------

http://scholar.google.com/scholar?q=antidiabetic%2Bmedicinal%2Bplants&hl=en&as_sdt=0&as_vis=1&oi=scholart

Google Scholar Search: antidiabetic+medicinal+plants
-

[ 01-20-2012, 02:43 PM: Message edited by: Keebler ]

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Keebler
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-
Back to your question:

" . . . wondering why we don't get hardly any replies on the majority of our posts..." (end quote)

What you usually post is very complex. Not sure about others here but it's much easier to cut and paste articles that relate than to work out a formal reply. Actual writing is very hard.

I hope my input helps.
-

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mom2kids
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I just got my computer back.

I don't have any answers for you, but I wanted to let you know that I am sorry for your predicament. I hope you get some answers, a doctor, prescription, etc., sometime soon though.

Hang in there, there has to be a light at the end of the tunnel soon.

[group hug]

--------------------
Down on her knees, she wept on the floor.
This hopeless life, she wanted no more.
Dead in the mind and cold to the bone,
She opened her eyes and saw she was alone. ~Seether

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Silverwolf
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<<<<< Randibear, GlitchyMomma, Carol in PA, Keebler, and anyone else following this,and praying etc. >>>>> .

Thank you , a huge Thank You , I do try not to be complex... but I am really awful at editing [had trouble in Junior-high, High-school and *College which *I could not finish* because of illness].

I learned about the Gymnemea Slyvestre and Andrographis from Lymenet and the kindness here <<<<<<Keebler >>>> Thank You!!!. I am taking these, as we are out of other options.

As <<<<< Randibear >>>>>> said, "it sounds strange..." it really does..and we are shocked at how strange Idaho really is, I want to move so badly...we are trying to find some way to save even a little cash...[Randi' we've been praying for y'all].

Ran into the problem w/ the testing strips for diabetes, I do have a few... but use them sparingly.

<<<<< Carol >>>>> ,Thanks for the link...will have TxCoord help me w/ the cut and paste,what I did did not work .I do apologise if I sound cranky... And then your box was full so I could not explain...

This is the first time in 55 years of life ,I could not get medicine when I truly need it...so I am -sure- I am panicky.

I was only priveleged to have a *LL specialist for a short time[late '06 early'07 a handful of visits], cannot even get thru to them by e-mail,

[there was a situation at the place and they 'reformed' after some ugly business to do w/ allowing Lyme treatment or not.].

I know I am getting complex again here... I wish I could say and do things differently, even our little home shows this ... we are scattered eclectic and beyond.

We feel alone, I know the Lord is w/us...but I still feel sorta freaked out... strange noises send us running to check water lines [after 13 leaks]. so many things...

Thanks to each one '<<<<< GlitchyMomma >>>>>' these are Silverwolfi hugs I appreciate the reply!!

Thanks to <<<<<< Each one who replied,and All Who are Praying >>>>>, It helps !!!

I am truly sorry that so many of us must walk such a tough road...it is not pleasant. A friend who we lost to breast cancer used to say '... Any Day above ground is a good day!!! '.

Now see my addled brain goes on a tangent, if one does spelunking[sp.?] a good day would be underground caving as well...

Again thank you to each replier and for the various links...

Silverwolfi and TxCoord 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

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Keebler
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-
I did not mean your writing style is complex but the matters you discuss are - and understandably so. You write and explain things well. Don't change that.

I just meant "complex" as in requiring a lot of thought to be able to help you - don't stop posting or asking.

It's just that often, I think many here just may not have the ability (energy, brain flow) to always reply in the manner they would like because of all that has to be considered.
-

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momindeep
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Silverwolf and TXC...the Lord has me praying for you:)
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Silverwolf
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<<<<< mom2kids and Keebler >>>>>,

Sorry computer kicked me off,and I had to reboot...Oy!!! Tres Annoying!!!

That's okay,we got a little Christmas surprise, another computer ,and TxCoord is working on it...hopefully we'll be able to have some work done soon on the old one I am using,waiting on finances.

<<<<< Mom2kids >>>>>, I hope your computer is okay, mine is outdated ,but we don't want to lose the info' we have on it.Thanks for the reply and well wishes!!!

<<<<< Keebler >>>>>, thanks for explaining... but I do actually feel over-complicated, inability to edit drives me up the wall. Trying to think of the proper words to explain.

Perhaps an inability to do abridgment editing ??? I have heard in some cases that some of us with Lyme and Co's have this issue. Sometimes my brain doesn't want to shut down... I'd like it to maybe just 'simplify' a bit.

TxC' said, perhaps it is like a 50 chapter book with the chapters out of order,and sometimes a chapter missing here and there with no warning or reason...

SO the footnote information gets extremely involved trying to get it back into some order.

I know the issues TxCoord and I have presented are really and truly complex. I think too many Lyme folk are in complex situations.

For us,several things are usually happening at once. And all we want is a little calmness and peace, with our bodies not betraying us.

ANd I am sure you are correct, when things are so complex, how does one answer,how can one help.Honestly just letting us vent,and sharing ideas/links etc, when possible helps.

-Actually, I wish the person who gave us the computer surprise for Christmas had given us monies instead, hope that doesn't sound too terrible and mercenary.

[It was my manipulative parent trying to control matters,after we specifically asked them not to try to buy a computer, as a means to make up for their son damaging the one I am using here.]

With what the computer cost,we could have gotten both a laptop,some repairs on this old computer,and maybe the cash for a Doctor,if/when I finally find one that is willing to help.

I will stop, for the moment, and see if there are anymore replies to respond too. I truly do appreciate the replies!

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

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Silverwolf
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<<<<< momindeep >>>>>,

Thank you for those prayers!!! It makes us both feel less alone [Smile] !!!

I see I need to edit a sentence around in my last reply... off to fix it...

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

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Keebler
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-
Silverwolf,

Really, this was not at all about your writing style.

You had asked why you didn't seem to get many replies and - from where I sit - it's just that the matter itself is complex - NOT the way you express yourself (or the very nice format).

AND, that as you know, writing is so very hard. I have a terrible time with it for the same reasons as you: thinking of the right word; trying to be concise (I never can do that); etc.

But, because writing is so hard for many of us and we WANT to be able to put thought into this and reply, I often just have to - uh - word loss - guess just -- not reply.

So, I was just trying to say: don't take it personally.

Other than keeping a format that is relatively easy for most to read - no one is judging writing style. We all know how hard all this is.
-

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jackie51
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Your post is in General Support. I rarely come here.

I think it's time you pack your stuff and move to a different state. Do some internet research on which state provides the best health services. Isn't Massachusetts a state with health care?

Isn't there a free clinic in your area? They have almost everything in my state. PM if you need to know what state.

Maybe you start writing your congresswoman/man. They all take e-mail now. Find out their email address. Use that new computer to your advantage.

good luck. [group hug]

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Silverwolf
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<<<<< jackie51 >>>>>,

Free clinic has helped all they are allowed to at this point,and has still tried to help us at least gain info'.

TxC' called our Senators office over some of the issues,and they were shocked to learn, how severe it is getting for Idahoans w/ no minor children at home,and on a fixed income.

We want out of Idaho,in our case we need a warmer safer environment. At least this winter so far the snow and cold haven't been as bad,yet. We have single digit and below 0* weather here at times.

I think writing our congressman/woman is a very good idea. Excellent suggestion! Maybe they will pay attention,and someone else will not find themselves in such a difficult situation as we are in.

The Senators office couldn't really do much...but I suspicion they are investigating some things now.

Thank You so much for the reply!!! It is very much appreciated...

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

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Dogsandcats
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I am sorry. Please forgive me for not responding. I read your post and did some research on the web.....I came up empty handed, so I didn't reply.

I should have at least told you I was praying.

I often wonder why some people have moved on and left me behind. I should know it is usually because they don't know what to say.
Hugs

--------------------
God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.

Billy Graham

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Keebler
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-
I wonder if the American Civil Liberties Union might help you sort this out regarding the insurance assess.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Silverwolf
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<<<<< Jackie >>>>>,

Please PM me if possible,your PM mail box is full.

<<<<< DogsandCats >>>>>,

Thanks for the reply,and most certainly you are forgiven!!! We've been coming up empty handed w/our research as well...

It helps to know others are praying...this has been so very discouraging for us. Even when money was tight in the past,we've been able to at least get needed medication...until now.

And I know, because so many here share helpful and valuable info' and links...if you are like me...you begin to think they really do have a helpful answer for everything.

They do try...but sometimes there may not be a ready, helpful answer available...and I am good at panic I guess.

My brain likes to go wandering,and not come helpfully under control especially when I am afraid. A special board,now closed taht I used to belong to called it " Dropping our baskets".

My basket drops, and rolls off for little trips on it's own...sometimes even a good gluten free, sugar free brownie doesn't make it cooperate.

--- See TxC' and I were not thinking about, how sometimes one just doesn't know what to say or do.

Usually I try to send a hug,even if I am jus' not sure what will help...but sometimes I am in panic mode.

Thanks to each replier, for helping as best you can! A prayer, a hug, a wish for better times...do help...

Links to help one concentrate on an idea that may bring help...are another fantastic idea, at least for me. This gives me some way to stop the panic!

See, we,TxCoord and I, have been literally forced out of a job[s] and abandoned,by folk we truly tho't actually cared, they were supposedly people of like faith.

And then family that I trusted turned out to not be trustworthy...

So when something is scary wrong, and not going well,and no one answers if we post...I panic,I am very human and very tired...exhausted really.

I try to hold my head up high, to look to the Lord...but sometimes I cannot see thru the brain fog and the tears and pain.

We are certainly not angry at anyone on LymeNet...we are upset,angry and disturbed by the circumstances that have us in this mess.

Again, I greatly appreciate the replies, just to vent it out helps.

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: 3558 | From SE Idaho | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Silver.. Don't forget the difference in TIME when posting here. Your original post was at 12:30 in the a.m.

You are NOT black listed here!! [group hug]

Wish I had answers for you!!

Love and hugs to both of you! [group hug]

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

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kidsgotlyme
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Just wanted to send you a big ol' [group hug]

I don't understand why you can't just walk into a walk-in clinic and get a prescription, especially since you are willing to pay cash.

I don't think I like Idaho!! Prayers for you Silverwolf.

--------------------
symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections.

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Silverwolf
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<<<<< Keebler, Lymetoo, and kidsgotlyme >>>>>,

Thank you for the replies...We willcheck about civil liberties.. one problem is the horrendous expense,for insurance and for walk in clinics...it is awful. Most of them want insurance and cash up front.

We have been trying to save little bits of cash.

We had to pay a $250 dollar plumbing bill and that is making it even more difficult. Free clinic info' warned us off of the 'walk-ins because of the high prices.

Thanks for tho'ts, prayers, hugs...and time difference reminders. Trying to get up more cash,and find a Dr. who will help.

If you cannot get medical insurance,and are low income do not move to SE Idaho,if you have any other option!!! It is severe here...

Thanks each replier,each one who is praying...it helps to know.

Jus' 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

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linky123
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Hi Silverwolf,

I don't know the answer either, but am in your corner.

People don't answer sometimes because they can't - not home, maybe taking a break from lymenet, not feeling well etc.

I've been on a lot lately, but am going to have to drop off for a while. Too much of the computer aggravates my headaches.

Hope you find out what's going on.

Take care and God bless.

--------------------
'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28

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sammy
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Hugs Silverwolf, this is the first time I saw your post here on LymeNet this evening. You and TxC are loved here. Please don't feel forgotten or unwanted.

Remember, many of us are sick and struggling like you too. We are all trying our best to help each other.

As Keebler pointed out, writing and responding to posts can be very difficult, it is for me too. I try my best but it takes me a long time and can be extremely frustrating. It's hard for me to clearly translate my thoughts into words. Sad because writing used to be one of my strengths.

So please, don't think that just because we are being slow to respond that we don't care. For me personally, I spent most of the day at the hospital seeing a specialist and getting testing done. When I finally got got home I crashed and slept for several hours. I only recently rejoined the land of the living now that I've slept and have eaten some dinner.

I'm sending you a PM too [Smile]

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Silverwolf
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Linky123 and Sammy,

Thank you for the replies!!!

Sorry to hear of the headaches and having to undergo tests...

I know that it is not pleasant. I get the headaches... and lately more 'IBS' symptoms than usual.

A young neighbor, who tries to help sometimes...forgot how serious compromised immune systems can be. We were exposed to intestinal virus around Christmas and cannot get rid of it.

We are trying to keep the symptoms calmed enough to pay bills,and get groceries... just exhausting.

I was so hoping that when we found this Lyme disease and treated I would be in better health... cannot seem to get better,

and then TxCoords health got worsened,and he was layed off [govt. driven] and so many surgeries later now...we both are just wiped out...

Like I said, this place, this Lyme family is our main source of Info', I am all too human and scared just now... have to stop for now... computer keeps sending message of hardware problem??? TxC' will check it in a bit.

Will check back in later...

Jus' Silverwolfi...and TxCoord 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: 3558 | From SE Idaho | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Silverwolf
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Our old computer here suddenly will not let me use my normal < and > sign for hugs...with the word
'link'...

Nothing like more issues...huh... let see if it will post...

--------------------
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

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mom2kids
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I don't think I like Idaho either!!! You need to get out of there as soon as you are able to. Nobody should have to suffer like that with absolutely no help from their community/state.

I'm going PM you, but I don't know if I'll get to it tonight, it might be later tomorrow, but I'll get to it ASAP. Take care in the meantime and know that you have alot of support here at LN.

--------------------
Down on her knees, she wept on the floor.
This hopeless life, she wanted no more.
Dead in the mind and cold to the bone,
She opened her eyes and saw she was alone. ~Seether

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Silverwolf
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<<<<< mom2kids >>>>>,

Thank You for the reply...it helps!

We have to wait on some medical stuff for TxC'. He hasn't been cleared to lift anything more than lite grocery. Heavy furniture is a definite -No- at this point for both of us.

Sorry,I wanted to get back sooner,but we had a call come in,and computer freeze ups still [our ISP and cable co. ]are going to be working on the lines...so we'll see what occurs.

If this crashes we may lose a lot of info', but will at least have the Christmas Surprise to get us back online.

Will check back in later... 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: 3558 | From SE Idaho | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
aperture
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Keebler's Google search really opened my eyes. Especially the following quote:

The difficult or frustrating patient, often a ``distressed high utilizer of medical services,'' often has unrecognized psychiatric problems.

Disgusting. Everything is summed up in terms of "the patient is crazy". I had throbbing pain in my face for an entire year.

I was getting weaker and weaker. The ER doc ran a CT scan, then told me "When you keep having all of these tests and everything comes up negative, you're going to have to accept that it's psychosomatic."

I like GlitchyMomma's response: "you need to blacklist THEM"

--------------------
aperture

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aperture
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http://healthandwelfare.idaho.gov/

Silverwolfi: have you been to the welfare office? If you apply for Food Stamps, make sure that TxCoord verifies all of his medical expenses. That will give you a deduction from your income.

Explain your medical situation to the caseworker. They know all of the community resources available. If they cannot help you, go to their supervisor, and so on and so on.

Heck, call Adult Protective Services if you have to. Do what you have to do to get the help that you need. The state has resources available.You just have to find them.

Prior to Lyme destroying my life, I was a Case Manager for my state's welfare office. I know that I used to refer clients to outside resources all of the time. There is help out there. Don't stop until you get it.

Hope I was able to help in a small way.

--------------------
aperture

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WIZARD
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I have been reading your last few posts.

My initial thought, is that if you were divorced from hubby you may qualify for benefits that you are now not eligible for.

It is an awful option, but I want to put it out there.

Saying prayers that a path will become clear to you in the near future.

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aperture
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WIZARD: I know someone who was in the exact same position. Her husband was sick and he didn't qualify for SSI/Medicaid due to her income.

She had to legally divorce him in order for him to qualify for the benefits he needed.

Horrifically sad that this has to happen to anyone.

--------------------
aperture

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Silverwolf
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<<<<< aperture and Wizard >>>>>,

Thanks for the replies !!!

Altho' Divorce is not an option for us, and our State Senators representative agrees w/ our assessment, We have talked about and checked on everything we can think of.

TxCoord and I will continue to age and die or be raptured in Gods time,as a couple or when He deems it our time[s].

We still keep in touch w/our case worker[he has not been able to come up with a way to help either],tho we could only get food stamps help for three months. We truly do fall thru the cracks here in Idaho.

TxCoord was working for a group contracted to Welfare-Food stamps program until the Govt/ cutbacks,when he was laid off in fall of '09. ANd we have a friend who works w/ grandparents raising grandkids.

In other words we have a line on the various agencies,and help to find more... everyone is broke .

Salvation army cannot even take applications for rent help for several more weeks. They are waiting on their govt. funding to come thru.

Things are just plain tight finances wise,and Idaho isn't the only state this way.

<<<<< Keebler >>>>>> thanks for the links I am reading them a little at a time!

<<<<< Sammy >>>>>> got your PM return,will return another reply after I have TxCoord read the info !!!.

Each replier thank you for the replies, tho'ts,and info'links, it really does help,and makes a big difference.

BBL Silverwolfi and TxCoord 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

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DKat
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Silverwolfi,

I'm sorry I have no wisdom to share or way to help but know you're in my prayers.

3 John 2 comes to mind ~ I pray for good fortune in everything you do, and for your good health--that your everyday affairs prosper, as well as your soul!

--------------------
Ecclesiastes 4:9-10 Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help.

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opus2828
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I have no answers for you but just want to reassure you that God has the answers and He will bring you through this.

Lifting both of you in prayer.


Julie

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Silverwolf
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<<<<< DKat and Opus2828/Julie >>>>>,

Thank you for the replies!!! The prayers and scripture are a huge help!!!

So is each reply,and I am trying to learn from each situation... I am so thankful for LymeNet!!!

This week, I'll be going thru' as many of my old posts as I can find,I want to see, if there is a pattern at all like a cyclical time frame,

or maybe herx type psych issues, for when I get really frightened . These are serious problems we deal with,and the illnesses make everything seem so much worse.

If I am 'cycling', perhaps I can find a way to ease things a bit... TxCoord and I have gone thru so much and it has been really difficult of late.

If I can find a way to handle things better, it is that much easier on our bodies and brains when the crises do occur.

Someway, I will get the meds I need...am getting some good feedback and ideas here and thru' the PMs as well.

I keep giving it all to the Lord... TxCoord needs me and I him !!! So I am doing my level best to get better, And to help him so he can get in better health as well.

Really we need to write a book,before we cannot remember the many things that have happened.

So again thank you to each replier, it is good to have a place where folks understand what we are going thru'... and I consider y'all family!!!

**** our ISP and Cable group will be working on things tonight and tomorrow doing updating and such, if we understood the notices correctly.

We are told that things might be slower than usual for a few hours,and service intermittent 'til they are finished.

So we may not get on-line right away tomorrow. We'll check in ASAP when we are able hopefully later in the AM.

Jus' Silverwolfi and TxCoord 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

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nonna05
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What about any Churches around there??????

Section 8 housing???????

other food banks????

Heck call the news and see if they have referrals

I'm pretty sure I've read family is NOT a source.

Emergency room?????????

How stuck are you there???

Like Jackie said there are states with resources that at least beat what you have now by a mile....

PM me if you want any ideas here [hi] [confused] [shake] Nonna

It has sounded like you are very much "dug in" where you are from other post's. See we read you....

I'm sure there are many here who wish you the best......

Have you improved at all during these last few years?????

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Mickie Mouse
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Here's a useful site you might want to scour:

http://www.needymeds.org/

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Silverwolf
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<<<<< nonna05 and Mickie Mouse >>>>>,

Thank You for the tho'tful replies, each one helps!!! We assess what is said,and check links, tho' slowly sometimes.

I am excited to see that 'needymeds' may cover some medications?! . Our free clinic [time is used up there], gave us a link here thru them , but we had a *serious issue w/ the only slide fee clinic* in area.

I mentioned it in some of these replies *[statins, serious reaction, and a student PA who wouldn't listen, I learned the hard way,that meds names may not sound like what they are.]*.

--- Am starting a different thread, w/ TxC's input/help[ I have no editing skills ] ,to explain some of the issues we have had.It will be here in General,and can be moved to which ever board fits if needed. ---

TxCoord, and I both appreciate the replies and the concern , sometimes, I am a grumpy wolf when my blood sugars go all whopty-copter [they are frequently off because of the Lyme and Co's,and various infections].

I don't want to make anyone else feel down,but I have not really progressed very far since the Dx in 2006. Perhaps I can explain a bit in the new thread...

Again , Thank you to each person who has taken the time to reply,and to those who are praying!!!

Jus' that Silverwolf 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

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Mickie Mouse
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Here's another site to scour:

http://www.ihfa.org/ihfa/housing-information-and-referral-center.aspx

You may be able to find some kind of assistance to help with the needed repairs to your current home, or maybe even relocation to housing more suitable for you and TxCoord.

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Silverwolf
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Hi <<<<< Mickie Mouse >>>>>,

Thanks for the IHFA link, TxC' has it up on the 211 exploring some of the options!!!

I appreciate you posting the link for us!!!
We'd love to relocate, have to wait until we talk w/ a DC Judge via teleconference in Boise [3rd party in a VA disability hearing.].

The hearing will occur sometime this spring or summer??! But I have started to slowly sort things, for keeping,tossing out,giving away ... makes moving easier.

TxC' has not been cleared to move much of anything, and I have some health issues too[lyme and Co's, severe tendonitis, etc,see tag line] ...so we'll see as hearing,and a possible moving time get closer.

Perhaps we can find something better in area, tho' our finances are extremely tight at this point... the IHFA site may be of some help!!!

Have to go out for a bit, tired but we need to tend a couple matters,and get in to different air for a bit.

Will BBL 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: 3558 | From SE Idaho | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
katiebobatie
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i am so sorry you are going through this [Frown]

i don't know about a blacklist, but doctors are SO horrible to me when they figure out i have lyme.

one even chased me out of the office screaming at me to "go back to minnesota!!" ... she did so publically in the waiting room in front of other pateints... so embarrassing!

tonight i had to go to urgent care, and then the ER...

every single doctor interrogated me about why i have a picc line. it was like i was "in trouble"...

i try to not flat out say that i have lyme disease, but when you have to list your medications they figure it out.

it sucks, because you just cant be honest at regular doctors offices and hospitals if you dont want to be treated like a criminal [Frown]

the last regular doctor i saw wouldnt even give me my much needed thyroid medicine. she said i had to stop being treated for lyme disease, or she wouldn't help me with ANYTHING... not even a cold.

i hate to tell you this, but you really will not find help from a regular doctor. you HAVE to go to an LLMD recommended from people here, and it might be a very long drive [Frown]

also, it will be VERY expensive, but it is your only hope [Frown]

my heart goes out to you, because i have no idea how you can possibly afford it on that kind of income.

but please know, you will only get sicker as time goes by, so try EVERYTHING you can possibly think of to come up with the money.

i wish i could help you more! it's so unfair to have a controversial disease that doctors persecute you for having, and you go bankrupt in order to pay for the neccessary treatments from the neccessary doctors.

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katiebobatie
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also, here is a great discount card i use for many of my medication that might help you save money!

even though its free, i can often get my prescriptions cheaper with this simple card!


http://freedrugcard.us/create-card.html


one of my meds was $400 WITH my insurance, but with this card it was only $80!!

i know youre just trying to find a doctor right now, but i thought it might help save money in the future, because i know youll need lots of meds to treat lyme!

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Silverwolf
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Hi <<<<< katiebobatie >>>>>,

Thank you for the replies and link info' will look into this!!

I am sorry to hear of your trials...these diseases are vicious, and can be difficult to treat.

I've had to do much alternative type supplementing, as i cannot take most ABX, and it is truly difficult to find a Doctor to help...

Even to get a simple diabetes meds prescription renewal...but we may have found some help. We'll know in a couple weeks... working on some finance.

We have to go out of town again soon, for some of TxC's medical appts.[Thank the Lord, at least VA helps with his .].

Thank you to each replier,for taking time to answer and give ideas and link info'!

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: 3558 | From SE Idaho | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
   

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