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» LymeNet Flash » Questions and Discussion » General Support » Help,Still with the UTI, Angry, #13 reply more info'0n issues

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Author Topic: Help,Still with the UTI, Angry, #13 reply more info'0n issues
Silverwolf
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Hi <<<<< Lymenet Family >>>>>,

last Thursady,july 28 I went ot a Urology Doc,they said the CT,I had some time before of pelvic and abdominal was fien.

No issues, they had me leave a urine sample suposedly 'clear'...well w/o mentioning to us, they grew more culture, I still have kelsiaella,and they want me to go to an Infectious diseseas dr. I am livid, angry right now,and TxCoord aint happy either.

I cannot take Macrobid,so they wont even try anything else. Said call PCP and see if he can think of something,and go see an infectious disease Doc.

By all reckonings thru the LAbCorp garbage report, I am negative for Lyme, tho'we know better.

Sorry I am shaking, ahve to calm down.

BBL Silverwolfi beyond upset [Mad] [Mad] [Mad]

[ 08-02-2016, 04:04 PM: 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

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Silverwolf
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Sorry that should be Klebsiela Pneu.

Still shaking, and yup keeping up with D-mannose. i am wondering if the infection is permanent????

discouraged 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
me
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[group hug] I'm so sorry, Silver.

--------------------
Just sharing my experiences, opinions, and what I've read and learned. Not medical advice.

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Silverwolf
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Hi <<<<< me >>>>>

Thank you so much, I am really discouraged,and don't know what else to do.

Even if I could get the LUAT[ Lyme Urine Antigen test] which we don't have money, I don't think they'd accept even a raging positive around here.

Waiting on clothes to dry,long story, dryer not safe in hot weather, so I cannot go anywhere right now. It'd have to be tomorrow or later.

I hate this, and Dad is finally being buried tomorrow, I couldn't be there, definetley cannot travel.

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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Lymetoo
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Silver .. I hope the ID doctor can help you. I've heard of several people lately who have a resistant UTI .. it's scary!!

Now one person is also having to take steroids at the same time, so that is probably why she can't get over the infection. She's allergic to antibiotics.

So the CT was checking to make sure it wasn't cancer, right? Glad that is all CLEAR!!

I'm so sorry you are grieving at the same time .. it makes it all so much harder.

[group hug]

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

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Silverwolf
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Hi <<<<< Lymetoo >>>>>,

Cancer was never mentioned, tho' they seemed to be looking for anything and everything,that could cause issues, kidney stones, kinks in intestines etc.

Please understand, I am a 'Medicaid' patient, around here in Vegas, we are treated very dismissively, and made to feel like we don't matter,as if one is less than a person.

And don't even mention LD and Co's, if you don't get a raging CDC positive you couldn't have such a thing [yeah right, Labcorp is so perfect at this Lyme DXing, NOT!].

The Quack-ity Quack of a Urology Doc' didn't even bother to check the long list of Allergies I have,including most ABX.That made me very angry.

I am relieved that the CT of abdomen and pelvic area was clear, but the UA turned out not to be clear, after they insisted it was.

Not sure what we are doing yet, we are supposed to check w/ PCP ,and TxCoord has therapy tomorrow.so we'll see how that all goes.

Sorry I am really just discouraged, and nothing seems to be stopping this mess. I am hoping and praying we can find some answers and get this cleared up soon.

Thanks for checking in on this post, we are both kinda down from all this ,and dad finally getting buried,in Oregon. There are family issues happening too,so it is doubly hard.

Don't know what to do or even say right now.

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

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Lymetoo
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I don't blame you. I wouldn't know what to do or say either.

Lyme is probably the least of your worries right now. Try to focus on getting the infection under control. If you do indeed have Lyme, the antibiotics you are given will probably work on it also.

Are you able to take Vitamin C?

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

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Jordana
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Can you take Ketek ?
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Silverwolf
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Hi <<<<< Lymetoo, and Jordana >>>>>,

I only do lower doses of Vit.C, but I do take some daily, it seems everything stings or burns anymore.

They wanted me to take Macrobid/Nitrofurantoin it makes my heart beat extremely fast, it wakes me up,and gets painful.

I asked about Keflex, but don't know yet,if it would help. It is the closest thing to a penicillin, that I could tolerate.

That I know of I've not had Ketek, if it is penicillin or tetracycline based I'd have to be super careful. The penicillin allergy is seriously bad, can't breathe, throat and neck swells,and so on.

I can research it and ask, if it might help. I never know what will or wont cause an allergic reaction.

I bring up the Lyme issue,because I believe it weakened and damaged my whole body, to the point where most any old infection could get a hold. Such as ,I frequently get upper respiratory infections.

So we'll see what happens with it all, I'll see what I can find out about Ketek.

Thanks both of you, for the input, I appreciate it greatly.

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

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Silverwolf
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Well blast,sorry no Ketek it is closely related to Biaxin,and Zithromax,both of which make my heart beat too rapidly,and the Biaxin mess gave me one of the worst cases of diarrhea I have ever had.

I cannot take those either... I am not sure what else we might try.

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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Jordana
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Kliebsiella is a superbug. It's got nothing to do with Lyme-- it's just a bad bug with very few abx that work on it and you happen to have it. I mean Lyme doesn't help but this is a different animal.

That's the reason they want you to go to an ID doc -- it's a resistant infection. This system works out horribly for everyone, especially sick people.

D-Mannose is effective and so is VITAMIN D3. Curcumin, garlic, cranberry concentrate all work a little.

http://www.greenmedinfo.com/disease/klebsiella-infections

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Lymetoo
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Ketek is very dangerous anyway .. so it's just as well that you can't take it.

Jordan spoke to what I was getting at .. Yes, the Lyme may make your system be less than optimal.. Makes it harder to get well, but right now it's the UTI that's got to be beaten down.

I was asking about the Vit C because a doctor told me 8 yrs ago that I HAD to do something to change the ph of my urine. He said Vit C but I can't take it. That's when a local naturopath told me about D-Mannose.

So I was thinking if you could take C , then it might help. If it adds to your pain, then perhaps not.

I'll be keeping you in prayer, Silver!

[group hug]

Scary stuff ..

http://www.cdc.gov/HAI/organisms/klebsiella/klebsiella.html

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

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Silverwolf
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Hi <<<<< Jordana,and Lymetoo >>>>>,

Thanks for the Links from both of you, we had come across some info' about many patients acquiring Klebsiella Pn. at hopsitals.

I suspicion I may have had it off and on for years w/o knowing it. And the Lyme compromising my immune system, has allowed it to get a foot hold this time.

After my nightmare surgeries situation in 1982, for a long time, I wouldn't go to doctors, unless i was literally passing out. I had gotten an infection UTI issue back then,and I'm not sure I ever completely got rid of it.

In 1992,when we found out that I had IC, we tracked the amount of times I went to urinate,and I was averaging 72 times in any given 24 hour period[over a weeks time].

I was told I had reactivated Epstien Barr virus. and CFIDs, the GP,and GYN did nothing about the urinary issues,this was in 1992, ten years after I found out that [1982] that I had a severe UTI.

In 1994, I was put on amytriptyline by a differnt doc. to try to help ease the bladder.kidney issues.

So who knows when I got this infection the first time??? I sure don't, I did find out that the trigonitis I had in 1982, was in fact IC ten years later in '92.

So now what?,TxC and I will do what we can on limited funding,to get into an ID Doc' will see what happens,Thanks again for the input, I really don't know what we'd do w/o y'all here on LymeNet

I need to go for the night, but i do apprecaite y'all .

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

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Silverwolf
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Hi there, sorry am a bit out of it,but will try to continue with info' here.

Daily I take: Cats Claw, Probiotic blend, CoQ10, Fish Flax and Borage blend with Omegas,Alpha Lipoic acid, B-12 Methlcobalamin, Andrographis, *D-mannose [*from cranberry,regular cranberry is to acid for me],

Magnesium, Milk thistle [Lunch], Sarsaparilla[Br'kfast],An Immunity-wellness blend with OLE and several other herbs in it,Turmeric/curcumin blend and Resveratrol, and a Digestive blend [all the above daily].

I take Elderberry fairly frequently, and Golden Seal, [occasionally other berberine blends too. recently have added Sida Acuta, several times a week.

I do occasional Teasel, and cryptolepsis, and every couple months I do a couple drops of *Walnut/Artemisia Annua/ Artemisinin blend *for aabout a week and a half.[ I seperate the *Walnut blend*, into sets of days, 3days, 4 days 3 days. and stop.

I do low doses and small amounts, otherwise I herx seriously bad. So all my Protocol[Buhner] is lower dose.

Allergies and serious intolerances:Amytriptyline, Azithromycin, Bactrim, Biaxin,Butazolidin, Caffergot [the ergotamines in it],Chlorphinarimine maleate, Ciprofloxacin,Codeine, Demerol, Dicyclomine Hydrochloride,Doxycycline,

Allergy list continues: Any Gluten, Ipratopium Bromide Nasal Solution,Metformin, Nitrofurantoin[MAcrobid ], Oats, Ornade, Penicillin, Statins[literally life threatening for me],and Steroids [pain confusion,personality changes,severe headache].

[And I've likely forgotten something, some of the Migraine meds, like Imipramine, don't do much but make my heart beat way too fast which can get painful.

For some reason, the UTI's URIs/Sinus infections are getting more frequent.

I also have to be very careful of eggs, it can have rough digestive consequences, and celery which makes my mouth burn.

The allergies,are anything from Anaphalaxis, to a rash,diarrhea and severe headaches, usually with pounding, racing heart palpitations, severe sore swollen throat and etc.

This is why I am at a loss of what to do now, throw in the LD and Co's and it's a real mess. LD broke down my system, and all sorts of issues have hit.

Anyone with any tho'ts or ideas of what may help??? I am adding in some Ashwagahnda eventually, but must be very very cautious, probably some other things I've forgotten that I take frequently to occasionally.

Gotta take a break for a few BBL

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

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Silverwolf
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I hope all can please forgive,if I don't make sense,or sound out of sorts.

They just buried my dad up in Oregon at 11:00 a.m Pac. time, and TxCoord and I could not go.He's on his way back from PT for his knee. There are family issues as well,so it's tough.

I'm just trying to listen to good Praise and Worship Music, and leaving everything to My Creator, the source of Love and Light and Life.

I am sort of at a loss what to do,so just trying to rest, and not think to much right now.

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

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Jordana
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Ah sweetheart, I'm sorry. Life is just too much sometimes.
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me
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Hugs, Silver. [group hug] We are here for you.

--------------------
Just sharing my experiences, opinions, and what I've read and learned. Not medical advice.

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Lymetoo
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[group hug]

Much love to you and TxC!

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

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Tincup
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Well goodness! So much going on! You were right! Seeing it all in print brings it home.

So sorry, again, on the loss of your father. Don't guess there are perfect things to say at a time like this, but I am so sorry it is weighing heavily on you.

I've probably told this story before, but in the event you haven't seen it....

My mother, a dear wonderful, beautiful woman, use to make up all of our lunches while we were kids in school. Living on military pay and my dad being away a lot during war times and for training had us all on a tight budget.

Anyhow, each morning she got up and made us all a big breakfast and then made sandwiches for all of us- usually 5 kids, sometimes more. Each sandwich was folded up neatly in wax paper, every day the same nice way.

She would pack our sandwiches in a little brown paper bag. On each one she would write our names in big letters on the side of the bag in black magic marker.

She would neatly fold down the top of the bags exactly 2 times. Not 3 times, not once, but two times. Then she would staple the tops with 2 staples.

She would set all the bags on the counter side by side and as we each left in the morning we would grab our lunch bag. If we somehow in the rush forgot out lunch it would always be waiting for us in the Principal's office.

Mom would put a treat in each bag with the sandwich and sometimes a note of encouragement, a reminder, give us a piece of candy none of the others got, and maybe a clipping from a magazine about something she thought we might like to see, or even a nice pin or a pretty ribbon for my hair.

She did this every school day for about 22 years!

When we were old enough to leave home she would take a large brown paper bag and write our names on them with the same kind of black magic marker and she would set those bags by the hat rack next to the front door.

While we were away, college, working, married, etc. she would drop our mail, reminders, news articles, etc. stuff we forgot to take with us last visit, and little things she would buy for us that she thought we'd like or would need and couldn't always afford.

And after each visit she would remind us as we were going out the door... "Don't forget your bag!"

When we got back to where we were living we'd open up the bag to see all the fun things she'd gathered for us and I always loved it. It always made me smile.

Today I like to think that she is up in heaven and while she is waiting for each of us to come be with her she is staying busy making up bags for everyone who enters, just to make them feel welcome and happy.

My bet is your dad got one of those special brown gift bags upon entering heaven and she is there helping to take care of him.

And he smiles....

[group hug]

[ 08-03-2016, 03:18 AM: Message edited by: Tincup ]

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www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Silverwolf
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Hello <<<<< Jordana,me, Lymetoo, and Tincup >>>>>,

Thank You for the kind words and hugs, part of my sadness,is the 'family issue' behind things with my dad,and how long it took to get him buried.

He died June 19th, it's long an involved, with Txc's surgery and therapy,and my medical issues I doubt we'd have been able to go... but at least his body is respectfully and properly treated,and buried now.

I was really hopeful, of being better physically,so if things change a bit,we could at least get away for a few days. With the Klebsiella Pneu. and more issues ,we can't, I can't go away from the restroom area for very long. I had tho't it was finally gone.

It seems anything can flare it, there is a communication problem between the clinic, Drs. Nurse and us.And now we find out that a whole bunch of my medical files, are messed up, wrong info' and so on.

The mix up is not what we gave them, but something is really messed over, with the Drs. transcribing staff, or the Urology staff. But it has my PCP's electronic signature on the documents.

When we try to get thru, to get to the doc' so he can get the forms for me to visit the ID Doc', they leave us on hold for 10 minutes or more, literally,or they wont talk to us,and so on.

We deliberately left off the Lyme disease stuff in the reports to the Uro' Doc' because we were told it was negative, and so on. Then we find out the Dr. sent the reports to the Urology people.

Deceased family members,are declared not dead, and not having had various physical issues that resulted in their deaths, and so on.

One page of the reports says I have Diabetes, another page says, no no diabetes, Another set of info; from my Doctors clinic says I don't have IC,or frequent UTIs' and another says I do.

We filled out the Doctor requested paper work[ with addendum work , to much for the space they gave on forms,but specifically done to properly answer], and they still gave me a prescription for a medicine I am definitely allergic too, even the PCP's mixed up report made that clear.

I don't get it, I'm confused, and tired of being treated like we are cattle, off to slaughter.

Since I got onto the Medicaid, the staff for my PCP at the clinic, suddenly seems incapable of returning a phone call within 72 business hours,as they state they will in their recorded messages.

I didn't want to have to use Medicaid, tho 'we are grateful to have something[ we were acting to avoid a fine, from not having insurance for me]. We are still on hold with the VA mess, and still on tight tight single income budget right now.

Just didn't need the 'superbug', death in the family, and family drama going on. along with TxC's knee surgery.

We have both been fighting discouragement over this whole mess, so the prayers, and cyber hugs, and the kind words mean so very very much to us.

I'll be here resting for a few days, hoping we can get this mess sorted out,and find a way to get this infection stopped, if we can get to a Doctor. lets see now, I've had a Neuro' doc' and a Uro' doc' decline to help me,and send me off to see someone else.

Can't see someone else 'til Someone from PCP's clinic is willing to make contact with us... and -Lyme Disease- seems to be right in the middle of this... so will update when we have more info'.

Thanks againeach of y'all, for tho't prayers, support and kind words. That is a beautiful story too, <<<<< Tinny >>>>>, I figure Dad is rejoicing with family and friends now, and maybe the family dogs are curled up in the middle of it all too.

Uncle Milton probably has a garden going,with huge berries,and fresh peas, and maybe Grandma has her roses there in Paradise too!!!

I miss all of them so much now!

Better go, for now,if I cryI wont be able to taste the good dinner that TxC' is whipping up. He has been happier than a bear in a trout stream to be able to be home ,and able to cook again.

Jus' Silverwolfi here...sigh...

--------------------
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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Sorry about writing up mini novelettes again, here.

Just having one of those days, I'm stuck at home with 'stuper-bug', and can't get out,it is affecting Urinary, gut, and sinuses too... and making my heart beat overly fast.

So I am venting out the issues a bit...

OhhOOOOOWooooWoooooOHhhhwooooooo Aaargh.

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
me
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[group hug] I wish I could do more than just give you a group hug. Thinking of you

--------------------
Just sharing my experiences, opinions, and what I've read and learned. Not medical advice.

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Lymetoo
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Great story, Tinny. Really really sweet.

Silver .. just take it one day at a time. Keep praying, keep praising, keep focused on getting help. That is all you can do.

I do hope you can get to the ID doctor very soon. Are you still on an antibiotic right now?

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

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me
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Silver, interstitial cystitis association has volunteers that may be able to help? Just a thought.

Here is the link to ask volunteers questions. I'm hoping they have information about IC related to your resistant infection.

http://www.ichelp.org/support/ask-an-ic-question/faqs/

--------------------
Just sharing my experiences, opinions, and what I've read and learned. Not medical advice.

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me
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Silver, I did a google search on abx resistance related to klebsiellia-pneum.

This link has antibiotic recommendations for hard to treat klebsiella infections:

http://www.everydayhealth.com/klebsiella-pneumoniae/guide/

*I don't know how accurate it is, but maybe when you see a doc the antibiotics listed could be inquired about?

I'm knowledgable about IC, but not on klebsiella.

Also, Tincup's story, I agree was beautiful.

It reminded me of how I think of loved ones I've lost. I think of them as angels watching over me during my hardest times. Brings tears to my eyes.

Thinking of you and Tx Coord.

--------------------
Just sharing my experiences, opinions, and what I've read and learned. Not medical advice.

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Tincup
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Hey yawl,

Because you both are so very special and have reached out to help others in their time of need, many, many times...

Someone will be in touch with you soon (email and/or by phone). It's an office in NV that I contacted and asked if they could kick some butt and help you.

Please tell them what you need, as a veteran for TX and for your medical care Silver.

I'm also sending you an email, if I can find the address, with lists of ID ducks and of primary care doctors in your area that accept Medicaid.

Let's get this train back on the track and get you all fixed up!

[group hug]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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me
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Tincup, you are amazing. You are still in my rock and roll hall of fame.

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Just sharing my experiences, opinions, and what I've read and learned. Not medical advice.

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me
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Tincup, since you don't have PM, I sent silver a pm letting her know you did something amazing to help her and to check the thread. What would we do without you?

--------------------
Just sharing my experiences, opinions, and what I've read and learned. Not medical advice.

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Tincup
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HA! Re: above note...

I found the address. So tired I forgot I had! Email on the way.

Have a lovely day!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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Thanks me, for both kind words and for alerting them. They deserve a special effort and if we can help, we surely will.

And don't tell them I said this...

The next people I reach out for will have to be on the east coast.

Ding dong me- me not you- waited up all night till 9 AM so I could make the contact, then realized Tx and Silver are in a different time zone! That sure sucks! HA!

I'm so tired right now I think I'll have to crawl like an alligator just to get to the bed! HA!

NIGHT!!!!

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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me
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Tinny, I was wondering what you are doing up at this hour, night owl!

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Just sharing my experiences, opinions, and what I've read and learned. Not medical advice.

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gz
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Hi Silver and Tx'C, sending hugs and prayers for you [group hug]
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gz
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TC, that is awesome.
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Silverwolf
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Hi there, finally sort of up and around, bad storm last night, scared doggy, tired doggymama here.

<<<<< Tinny, Lymetoo, me,and gz >>>>>,

All'ay'all, thnaks for tho'ts and prayers,links, and reaching out to others on our behalf.

We are waiting on communication from Dr,and the communications from various info' sent to us.

I am typing a bit 'wounded' , bad storm here last night, tired scared doggy, poor li'l guy was afraid to go out to potty. And then I tripped at 3:00 a.m when I lost my balance. Caught my self, but right arm/hand/wrist, rt.knee and ankle are really stiff.

Just got over tired with everything, and the Lyme-Lurch-shuffle and Superbug-kerfuffle hit me. TxC' got at least some sleep, I think maybe his CPAP machine drowns out some of the noise.

TxCoord is helping me,and we will check out the various links and things,as we watch and wait.

Tinny, that story still makes me smile each time I here of it. Dads ,Mamma was a teacher many many years ago, and I bet she knows your Mom.
Gramma was a love. So were my Mom and her folks. her Mom was super creative.

Gotta go before this Silverwolfi is sittin' in the mists of tears ,don't want a puddle forming and drag my tail thru it...

I'ts just Silverwolfi me here, I am so grateful for this <<<<< Lymenet family >>>>>!

--------------------
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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uh... PS. scared pupdog is our little 15 lb. min-pin mix.

goot go for a bit, TxC' is 'plating lunch!OOps gotta go...can't spell...

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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Tincup
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Just checking on you today. Hope you are able to make some progress and also have a delightful day.

[group hug]

Also, to those who liked the story- thanks for the kind words.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Silverwolf
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Hello <<<<< Tinny and our various Lymenet Folk >>>>>,

Tinny thanks for asking how I am!!

At this point, the 48 hours to hear from my Drs. office is up ,and of course nothing, no communication. I kinda figured they'd pull this, it's been happening more and more.

Everything is pretty much as it has been, still w/o a recommend [which Medicaid seems to need] so no appt. with a ID Doc' yet... I'm just trying to stay calm.

I still cannot spell,LOL when I first typed the word 'Medicaid' in the paragraph above,I looked at it and it said 'Madicaid'. Perhaps that's fitting?!

I'm more tired than usual,and my heart is tending to wake me up racing, then I really have to head to the restroom... what's a Wolfi girl ta do? ya know!

A part of my concern ,when i don't seem to have to run to the restroom quite as much,is if it is even safe for me to go anywhere?

Is it safe to be around friends and church folk with this darn Superbug? Not all of them have the healthiest of Immune Systems [ sorta like me,and many of us Lyme folk].I don't want anyone else getting this, it is no fun.

I went for a short ride w/ TxC' Wed. but had to come back fairly quick as I had to make a restroom stop.

We got more AZO/Uristat type product as I'd run out,so we'll see if that helps, for the time being.

A cousin,posted some of my Dads burial and the remembrance gathering after it. So we at least got to view that,on a private family site. And we were grateful to get to see it.

Mainly,I am weary,and tired of this bug' that doesn't want to go away. But I am trying to keep my muzzle from draggin' too much.

TxC' is working on a letter about our experience with the Uro' Doc' which has not been pleasant. Especially after they ordered the meds we told them,and the PCP's report told them, that I was allergic.

I certainly wasn't going to take it, TxC' got a list of my allergies to our Pharmacy, the poor Pharmacist was apoplgizing[apologizing],it certainly wasn't their fault that Uro' Dumby...er Uro' Doc' chose not to read the reports and paperwork.

Well,I did get a small load of clothes washed and hung up here in the house, and then had to nap, doing that a lot lately.

Better go for now, but I appreciate your asking after me!!

LymeNet is a great place, And I remain glad to be able to participate!

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

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Lymetoo
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Silver .. are you on any antibiotics right now? I'm worried about you!!!

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

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Silverwolf
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Hi <<<<< Lymetoo >>>>>,

Not on ABX right now, taking an OTC anti-bacterial w/ an analgesic in it. just started it today,on half dose.it's called Cystex Plus. And I take garlic caps.

Can't do much until I can get PCP to respond, and someone from his office sent my last negative Labcorp Lyme Test to the URO Doc'. Who then acted like I was a 'frequent flyer' for ABX.

That is,until the second Culture they forgot to tell us they were running[1st was clear], came up Positive yet again for Kleb. Pneu.

Then since TxCoord explained that it was on my allergy list [in the PCP's report, no less] URO Doc said since you cannot take Macrobid/nitrofurantoin I can't help you.

Suggested we call PCP and get referral to an ID Doc. It all still sounds fishy to me.And PCP's staff still hasn't returned the call,about seeing PCP to get a referral.

And so we wait, hopefully we will have someone contact us soon to begin an investigation,in to what is really going on.

I am just really tired, and it is hard not to be discouraged. I keep taking what supplements we can get, and pray. This is a nightmare, and I am even wondering if I will need to change PCP Doctors.

The Report that came from PCPs office has multiple errors in it. And it is worrisome, what would medicaid say to a report that says I don't have Diabetes on one page,and that I do on the next page.

Or that my parents and grandparents are not deceased. Then on another page it explains the illnesses that eventually caused their death.

TxCoord is as puzzled as I am, and we are working on a letter of complaint about the URO Doc'.And what is going on at the PCP's clinic with staff as well, leaving TxC' on hold for over 10 minutes and so on, when he was trying to get me in to see PCP for the referral and to find out what's up with report etc.

I think the tiredness from the bug, has the MVP acting up,or I am having tachycardia which I hadn't had in years. [Oh supposedly there is nothing going on with my heart per the PCP's report, but I have atherosclerosis,and calcium plaques per what the abdominal/Pelvic CT shows .].

I'm about ready to go back to Urgent Care,that the URO' Doc' railed against.

I better stop, since it is turning into a mini-novellette again here.

Thanks for asking after me. I appreciate it and the prayer too. Really need it right now.

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

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Silverwolf
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jus' me,Silverwolfi again,

Can't sleep, tired as all get out, but urinary frequency and leg cramps are intervening.

It's about !:40 a.m Pac time here, We have been having another issue with my PCP's clinic, we have signed the Hippa forms at least 2 times, maybe three since last year,for TxCoord to get info' for me over the phone.

PCP's staff keeps losing the paperwork, I am hearing impaired,and wear hearing aides. I am seriously considering, getting a hold of Americans with Disabilities Act folks.

We feel it is being done, losing the paperwork, deliberately. It is getting ridiculous.
We will contact Disabled Veterans of America too,if it seems neccesary.

TxCoords is a Disabled American Veteran[who is still fighting to get his just and due compensation thru the VA], and it really looks as tho' ,they don't care or respect us as disabled people.

I do not get disability,we fall thru the legal loopholes,and I am not eligible,until I am at least 62. And YES,we have checked with Social Security, and Medicaid.It is an 'unfortunate' situation.

I have soundly and flatly, flat out had it. And am very disappointed with the staff at PCP's clinic. And strangely all of this got weird -after- we got the Medicaid for me.

I have been going to the Clinic since 2013. And I don't call in demanding to see my Doctor,for every little hangnail,or flatulence episode. Sorry for the vent, but I am really fed up.

I greatly appreciate being able to come to this site, and I also feel that, this is a prejudice against Chronic Lyme mess, with PCPs staff, Labcorp and the URO Doc.

And there is seeming to be more evidence that the VA is causing issues too. Yes TxCoord has been 'wait listed' more than once[as have far to many Veterans].

I don't really care if someone tells us we are being, paranoid conspiracy theorists. to many folk here on LymeNet have suffered thru grave unfairness. and it isn't a conspiracy,or Paranoia when others really are out to cause us problems.

Gotta go for now, between leg cramps,and tendon sprain ,from a couple nights ago when I lost my balance. It is hard to think straight. Please excuse my venting.

I just want the Kleb. Pneu. to go away,and to be treated like a Human being.And where is that bottle of 'LYME AWAY'? Maybe it would work on Superbugs??!! I can tell my heart is working, it keeps speeding up...Aaarrgh...

Well off to try to sleep some more,after I try a bit more magnesium.

Tired 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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Lymetoo
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Job One: Do whatever it takes to get in to see the ID doctor, or go to different Urgent Care if need be.

You need meds now before it gets any worse.

[group hug]

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

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Silverwolf
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Hi <<<<< Lymetoo >>>>>,

The Urgent care wasn't the issue, except in the small-mindedness of the Urologist.

The UC was actually prompt and courteous. So I am seriously thinking about going back there. Please note, my UC experience in June was the first of my life.

Since my PCP's office staff, wont cooperate, The UC may be my best option. And after they [PCP's clinic]did the Negative Labcorp supposed WB,sent to the URO,I'm almost ready to get a different PCP when this is over.

Both TxCoord and I, felt that the URO Doc' had decided before he ever met us,that I was 'frequent flyer shopping' for ABX. Flat out untrue,and considering, TxC' has done Drug and Alcohol facilitation counseling,I think my own husband would know.

As he is reminding me TxCoord stands for treatment coordinator. In My early morning vent rant of a mini-Novellette, I mentioned somewhere, how we of LymeNet have been treated very unfairly as to Chronic Lyme.

I'm certainly not mad at anyone here, just trying to figure out how,under Medicaids regulations, to find an ID Doc'and likely a different PCP,w/o a referral from a PCP.

That UC might be the best way to go.Thanks for the interest,and the continuing prayers.

Gotta close,and get computer shut off, for a bit, as soon as I check our e-mail, wathcing for a communication that might help end much of this drama.

Jus' Silverwolfi here, trying to stay calm

--------------------
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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bluelyme
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Sending prayers silver, maybe try the uc again ..or er see if they will do a ua culture there ..maybe vanco is that on your list?

My kidneys have been taxed with all my treatment and one herb that helped was palo azul ...i dont know if you have a good apothicary or chinese doctor in sin city but that may be of more help than waiting for medicare

. There is the route of ordering abx from online and they said the klebsella in my nose was suceptable to amox clavinate ..i know you cant do the amox but or Bactrim but can you do the trimithoprim?

Condolences on your father and i pray you find resolution to your suffering ..go to church get out while you can ..my cousin has bad uti has taken cipro many times and cant kick it ...maybe dinking silver for the silverwolf?

--------------------
Blue

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Lymetoo
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I'm not sure if an Urgent Care DR can refer you to an ID.. I doubt it. I was just concerned that SOMEONE needs to put you on abx until you can get to the ID doctor. It could take a week or more and that is NOT good.

The less you mention lyme to any of those doctors, the better. Not one word of mention to the ID doctor or he could refuse to handle your case.

Write those letters and complain to those that need to have their heads rolled, but also focus on getting treatment as soon as possible.

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

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Silverwolf
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Hi there <<<<< bluelyme, and Lymetoo >>>>>,

Thanks for tho'ts prayers and info'. Quest labs, sent us the info' from the test at the URO' Doc,and since I was not given any ABX, they can check the results at the UC.

Giving another sample wouldn't show much right now,as the AZO/Uristat anelgesic and or Cystex skews the tests. But the test clearly showed Kleb. Pneu, again, ye,t still.

Not sure if UC can arrange for a ID Doc' altho' they could for a URO if we asked [they offered before, but we were following protocol thru medicaid for all the good it did].

The test shows what is supposed to help fight the ABX resistant Kleb.PN. , Rocephin is on that list, but it's gonna take more than one shot.

Most everything else I am allergic to,or have severe intolerances to. Bactrim is on the list, but gives me really severe, headaches,so I don't know.

As the computer in the Original Star Trek series said ... " Working..." [on it].

And I am still angry at my PCP's office, I don't understand why they included the last Negative LabCorp 'Western Blot' test. I didn't even want to do the that last test.

We had done one, earlier,as mentioned some months back here on LymeNet, to see if by some chance it would finally show the positive. PCP knows a little about LD,but is basically an IDSA lackey.

PCP suggested the second test when LabCorp didn't do what he requested on the 1st one. I didn't mention it to URO Doc' at all. Made sure it was not in any of our test result notes,for recent UA and blood tests.

But someone from PCP's office tho't they should include it,I guess so URO doc could imply I was ABX shopping??? I can't see any other reason why they would do that...

That URO Doc' was a piece of work, even denying evidence in the records from one of my surgeries [it pertained to Kidneys and Urinary tract]. I wont go into it all, I get too upset.

So we'll see what the UC can do,or an ER, there's a couple fairly close in my Mediciad group plan. If UC can't help with an ID Doc' a hopsital should be able too.

Thanks again,for those prayers, we need them right now. This mess isn't good for TxCoord either,altho' he is recovering excellently from the partial repair/replace on his knee. His therapists are really encouraged for him.

I don't want him under more stress, so we'll get in as soon as he can take me. Will elt y'all know what we find out.

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

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Lymetoo
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If they can refer you to a URO, then they should be able to refer you to an ID doctor. Let's hope and PRAY!

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

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Lymetoo
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This is scary but I knew you'd still want to see it. Ran across it accidentally on another group:

http://fixyourgut.com/klebsiella-cause-rheumatoid-arthritis-alkalizing-spondylosis-part-1/

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

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Tincup
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Hey Silver!

Was the contact I arranged for earlier able to assist you? Did you try any of the Medicaid primary care docs or the Medicaid ID docs on the list I sent?

I ask because I am upset that you are still not getting anywhere and need help. Let me know what's up with that.

If no one contacted you to assist I need to know.

Hugs!

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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TxCoord
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Thanks TC. No word yet from the folks you recommended.

As far as going to other doctors, in Medicaid/Amerigroup you have to have a referral from either your PCP or another doctor that your PCP recommended.

If you don't, then Medicaid/Amerigroup does not have to (and in most cases will not) pay them and then you (the subscriber) are left with the bill.

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I have a good time wherever I go!

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Silverwolf
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Hi <<<<< Lymetoo and Tinny >>>>>,

Thanks for the info'and checking in with us.Leaving in a few minutes, for the UC,as our PCP's office doesn't seem to care about the patients, even if they call right now they are well past the 48 hour window they gave us.

And my Abdominal/Pelvic w/ Circulatory system included was scary,about the heart, it says " ...Severe coronary artery calcification... atherosclerosis of the aorta...".

The impression is "... no acute disease....." and etc...

Considering everyone in Mommas side fo the family,had heart disease, and my dad's recent death, altho' called natural causes. He was having heart problems,as well. Dad wouldn't let them work on his heart.

Gotta go finish getting ready,will report on what happens when I get back,or TxC' will if they take me over to ER.

Really tired, this junk has started going respiratory/sinus,and my heart still want beat weirdly fast w/o my permission.

Jus' Silverwolfi heading off,and appreciative of any prayers,and hugs right now...

--------------------
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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Hello <<<<< LymeNet Family >>>>>,

The Nurse Prac. at the UC had the same question we are wondering, Why didn't they try to issue you another, ABX?

Even w/ the Allergies and Intolerance issue,there should be a willingness for the Drs., Uro's etc. to try one or more other ABX.

So we went with Bactrim, which I have a bad headache reaction too, with children's dose of Benydrl allergy med' to hopefully stop any serous issues.

The NP,is trying to locate an ID Doc' that will take us,thru the Amerigroup-madicaid, with the UC folk as the Doctors. Since even now there is still no return call from my PCP's clinic/office.

<<<<< Tinny >>>>>,no word from the folk you mentioned yet either. I know this is a very busy time for them.

It is discouraging, that Amerigroup is so limiting in who can help one get referrals for specialists. so we are hoping this will work.

TxCoord,is healing well, but still gets tired between grocery trips, and DR./therapist trips. His and mine [well not therapy for me].

I will try my first Bactrim in a bit w/ supper, and pray that there are no serious side effects.

At least I have something to try to fight this with now. Don't understand why it isn't going away tho'.And it is making my sinuses act up too.

I'm signing off for now...

Jus' Eeyore drifty-tired Silverwolfi...
[unlike Ol' Eeyore Donkey TxC' and I are determined to find something that ...Will Work...]

--------------------
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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me
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Glad you got Bactrim and glad TXCoord is healing well. Praying for y'all. [group hug]

--------------------
Just sharing my experiences, opinions, and what I've read and learned. Not medical advice.

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Lymetoo
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Thanks for the update. I'm so glad you were able to get to Urgent Care .. but I hope you will grill the stupid PCP's office for lack of treatment. [Frown]

Hoping and praying that the Bactrim will go OK this time.

[group hug]

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

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Silverwolf
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Hi there <<<<< me, and Lymetoo >>>>>,

Thanks for the prayers and kind tho'ts, we still haven't heard anything from anyone to do with this mess. Aside from the UC, getting us the Bactrim, which we hugely appreciate.

TxC' is calling the UC tomorrow to see if the Nurse Prac' was able to find a ID Doc' that would take me. If they have found one we haven't been called as yet.

My concern is that they wont be allowed to, as they are not my PCP, and -A'G'Madicaid- is really strange with their regulations.

No calls from PCP's staff either. So TxC' is working on a letter, and I don't think they will like it but this has gotten ridiculous. Something has to be done... we are wondering if they are doing this to everyone in this Medicaid plan.

<<<<< Tinny >>>>>, still no communication from the One that you mentioned as of this afternoon.

So far I am handling the Bactrim ,with minor itching, but I have been getting leg cramps and cramps in my hand too. Lately my heart starts beating really fast over nothing,and anything. So I don't know if it is meds related.

TxCoord and I have decided if I have any more issues, we will just go to the nearest ER that takes my plan. I am really tired from all of this.I don't like hospitals. But, I'd like to be around for a good while longer.Provided it is in Creators plan for me to stay here on earth.

So that is where we stand for the moment.

Jus' Silverwolfi updating...

--------------------
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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Tincup
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Just communicated with the S's office AGAIN in Nevada and they are calling you right now. If they don't I am going to blow up a storm and rain all over them!

So sorry you've had to wait, but then again, it's the government!

[group hug]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Silverwolf
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Oh <<<<< Tinny >>>>>,

TxCoord is on the phone with someone from your Specific Individual, explaining what has been happening... so we'll see what happens.

Will update this as soon as I can... when we find out more [and provided I can get back on, had trouble getting on to LymeNet this morning, don't know if it was our laptop or what?!].

BBL ... Jus' Silverwolfi here

Edit in: here, His office called, and a couple folks will call back tomorrow,to give and get more info' as to what is up,and what might could be done.

So we are hopeful that soon there will be some sort of resolution to all this mess.

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

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Lymetoo
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AWESOME!

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

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Tincup
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Just a quick stop in to see if you had any response yet. And...

Oh good! Thanks for letting me know!

Sure hope they can assist you. That is their job! And you all are so very special and deserve help.

Feel better soon, both of you!

[group hug]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Silverwolf
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Hi <<<<< Tinny >>>>>,

Haven't had today's call yet, but yesterday they called on the late side so they may still be able to call.

Because TxC' has help from a Congress-persons VA Liason. The folk that called us yesterday, don't cross that boundary.

They are researching to find out what can be done about current issue w/ me and the Drs. and staff thru my 'Madicaid' .Their person who deals with that,legislation and so on, is supposed to call, hopefully they make it today.

TxCoord briefly explained yesterday,and they will want more detail today.

As to his VA compensation for disability, between the American Legion, and the new Judge,[former one quit],we found out today,that it is no longer a court case, the new Judge is reviewing it.

Don't know the outcome, it was supposed to be finished in 2013, and the former Judge, kicked the case back to VA, for not doing due diligence in researching findings.

Quite frankly, the VA folk,trying to say he doesn't deserve the Compensation, did not research very well,and were not properly prepared.
Our proof is mounting, that He is in disabled from 'Presumed Herbicide exposure'.


AO definitely was used on his base,As were a 'rainbow' [ they used all sorts of colors as code names] of other chemicals, and the Security Police were in fact exposed.

We are hopeful,of just and due compensation, this stalling, and going back and forth round and round feels like a tennis match,and we are the tennis ball.

As far as my stuff, we are waiting on the second call,and TxCoord is working hard on a letter of complaint. he took a rest break so I'm on the Laptop for a bit. This weirdness should not happen to anyone.

Gotta go for now. Thanks again so much for the help,we'll update as more news comes in.

Jus' Silverwolfi here, Tired from the meds, but glad to be getting some sort of treatment.

--------------------
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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Hi <<<<< Tinny >>>>>,

Didn't get the follow up call today, but we know this a very busy time for those folks.

So hopefully they can return call in a day or two.

We appreciate this all so much!

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
   

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