posted
I havent written any posts in several weeks. I started to feeel better, then got bad again...then started to improve, cut back my abx cuz I knew the IV's were coming soon. The cut-back started me feeling a li'l sicker again by the time I'm writing this.
I was most recently on plaquenil 200mg BID, Amoxicillin 500mg TID, and Zithromax 500mg BID. I have bartonella also. So we'll see if they want to "mix" in some levaquin or something?
So I figured I'd leave an account of how it all goes?
First off, I've been fighting tooth-and-nail for over 2 YEARS to get IV Rocephin! Since then I've run thru well over a dozen Dr's, Well over $10,000 in direct and indirect LYME BS
They're FINALLY gonna give it to me. The Dr. at the end who is giving it to me (IV's) said: "You know what the problem/concern is with IV abx is PICC-LINE ABUSE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !So they R worried that patients will take the "opportunity" to try injecting various illicit drugs!!!! So instead, I'm put thru 2 YEARS of AGONY, THOUSANDS of DOLLARS, and MAN-hours as well!
Thats unnecessary pain and suffering just so Dr's can feel more "comfortable" that their patients are drug users?!?!?!?!!? They R supposed to recognize this and prevent the picc line insertion in the first place?! THATS TOO MUCH RESPONSIBILITY FOR DOCTORS!!- THEY ARE ALL SCARED ****LESS TO DO ANYTHING TO HELP SERIOUSLY ILL LYME PATIENTS!! The Dr's have come right out and told me this SEVERAL times! From prescribing Valium for my crippling anxiety/insomnia/incredible nervousness, to prescribing pain meds like Vicodin!! I had to twist their arms off and FIRE many of my Dr's. just to get the Valium and pain meds. The most difficult of all though, was to get this darn IV (Picc line) inserted CVS said they dont have ROCEPHIN for IV use, so I'm going to have to ask this morning, where to get my rocephin from?
The pharmacist was all concerned about using a hood to mix in the sterile water to make it into a solution. I think that's just stupid cuz its being used IMMEDIATELY...there's just no time for bacteria to grow in the water. Especially when the water is ALREADY sterilized and is being mixed into a POWERFUL antibiotic? PICC lines have been known to cause infections in some patients, but I would imagine it's from other causes than tainted medicine. Patients not on so many abx maybe?
I've mixed IM shots by myself. They come w/ a glass ampule containing sterile water and you just mix them for immediate use only. I NEVER had a problem with infection at the injection site...or even inflammation, redness, tenderness never occurred.
Imagine getting rocephin 1 gram TID? Having a nurse come to yer house 3 times EVERYDAY!!! Ridiculous! I'll let you guys know what happens.
[ 13. January 2009, 08:09 PM: Message edited by: James Marschner ]
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Good luck James. I think the nurse will teach you how to do the IV. Then he/she will only come one time per week to change your dressing.
I had no problems with IV. Just keep it clean ans dry.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Day 1 consisted of me driving very far away to special procedure medical facility so that I wouldnt have to wait a month to get the picc line inserted.
So when I got there and showed them my Dr's requisition/recomendation or whatever filled out for their facility...they said they were NEVER NOTIFIED I WAS COMING!!
After they called my Dr., they told me they canceled it b/c my insurance (Aetna.) didnt want to pay for it to be done at that facility!
So my Dr's office told me to go to Sunrise memorial Hospital and show them my recommendation for picc line insertion and they would do it there.
First, they didnt believe that the Dr's recommendation form he filled out, was even REAL! They insisted on calling there again. They confirmed that YES I AM SUPPOSED TO GET A PICC LINE INSERTED TODAY....but yet the hospital then suddenly changed their reasoning and said that they JUST PLAIN DONT DO THAT PROCEDURE THERE AT THAT HOSPITAL!! Of coarse they do....but not for me!
So I call Dr's office AGAIN. Now they say they will have to call around to find somewhere that will do it....AND GET BACK TO ME!!!!! So they found a place, called me and said again: THEY WILL CALL YOU AND TELL YOU WHEN YOU CAN COME IN FOR THE PROCEDURE!
So I'm sitting here waiting without any abx at all.
Awesome health care!! This country is a friggin' JOKE!
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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bettyg
Unregistered
posted
talk about BS at its finest!
so sorry to read your 1st day was like this! best wishes james!
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hang on James. Finally someone will get it right and you'll be on your way to feeling better.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
So I got "THE CALL" today and learned a little something.
When the radiology center called they asked me if I'd gotten my bloodwork done yet?
Having extensive bloodwork done over and over and over again...and carrying the records around w/ me, I was a little irritated that I have to go down to Quest and get MORE blood drawn.
However, I realize now that the PCP Dr. that finally ordered the picc-line and the IV form Rocephin, MUST NOT HAVE KNOWN that I needed more bloodwork before the procedure?
He says he's currently treating 14 other patients with Lyme though? I guess NONE of them have ever reached the point of IV meds? I didnt even bother to ask him what kind of treatment he was giving them. He'd probably say 1-2 months of doxycycline or something and it would just frustrate me further. He also couldn't understand why I was involved w/ a pain mgmnt Doc either. Also, he was astounded that Lyme has disabled me from working for the last year and not able to work well or much for a year before that. NOT WANTING TO FIRE ANOTHER Dr...I just keep quiet now.
So I gotta wait 'till monday now. STill, I'm gettin' it done!!
Being innately cynical, I wonder now...what ARE they testing my blood FOR? I hope it's for some REAL safey issue like to check for hemophilia or blood thinners. I HOPE ITS NOT a tox screen to try and find out if I am an IV drug user. That would be very upsetting that they would put me thru 2 years of agony, disability-loss of job, thousands of dollars out of pocket and related expenses. etc...Just because they dont want to make life a little "easier" for the IV drug user while the picc line is IN. OBVIOUSLY an IV drug user will do ANYTHING to get their fixes picc-line or NOT! Plus, I already went thru tox screens for pain mgmnt and told them that I AM NOT ON DRUGS myself!
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
The blood work is probaly just a cbc and to check the functioning of your liver and kidneys before they put you on iv...
they will need to continue to be checked while you are on iv.
Like feelfit said keeping it clean and dry is really important. I got my meds and supplies delivered from an infusion company and the home health care(a different company) comes to the house 1 time a week to change the dressing and take the blood.
I hook it up. it is not hard just have to keep it all clean and be careful not to contaminate anything.
I am sorry you have had such a long fight to get the picc and abx.
Just in case you didnt know rocephin can cause gallstones so be vigilant if you think you are developing symptoms.
Glad you found a place that will insert the picc for you. I hope you dont have anymore of these getting things situated problems. You have had far more than your fair share.
posted
I'm just astonished at the ignorant fools that call themselves Dr's AND the ignorant fools that work in the fron office.
I was looking for an infectious disease Dr. out here in Las Vegas, so I called around and got ahold of one infectious dz Doc. The immigrant girl that answered the phone was very short/rude w/ me over the phone b/c I didnt just want to make an appt....I wanted to ask if this particular infect. DZ doctor had any 1st hand experience TREATING LYME? Cuz I'm gettin' the IV's soon and need someone to moniter, increase the dose step by step - writing new scripts.
I could tell the girl was stumped by the question by her long pause. Then she answered very fast and loud.."YES!...Yes She does!She works out of a hospital as infectious DZ DOC!". Reluctantly, I agreed to accept her answer and make the appt.
Then when my appt cane round, I asked the girl face to face before I paid my co-payment: "Does this Dr have 1st hand experience treating LYME DZ?". She replied after the same long pause along with a very confused look on her face: "YES! YES! She has experience treating Lyme Dz b/c she works out of a hospital also!". I thought OH CRAP! here we go! I paid her my co-pay and sat down to wait.
When the Dr. came in I immediately asked: "Do u have experience treating Lyme Dz?".- She (The Dr.) gave me a VERY PERPLEXED look: "No....Why? who told you that I have?".
I felt like I got punched in the stomach! Oh my God! Your front office girl who was rude b/c she thought she knew EVRYTHING and I was just ANOTHER IDIOT patient! Then, to top it off, I asked her AGAIN before I paid her any MONEY!!!!! B/c I'm disabled and am BROKE!
Thanks ignorant front office girl! I listened to them try to read medical transcripts out loud, and they can hardly even read...!
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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posted
So my PCP hearing this, wrote me a referral for an infectious dz doctor that he knew of and said he'd fax/email them the referral, plus I had a copy as well.
So I call the Dr's office and the different front office girl gets very rude/short w/ me AGAIN! She says: "Do u have a referral?". I said "yes" and told her who my Dr was and explained that they should've sent them hte refferal.
She continued to be rude saying: "OK, u cant just call and make an appt w/o a referral!". I explained that my insurance clearly says that I dont need a referral, but I had one anyway.
She continued w/ the attitude saying "well we have to verify that this referral is real!". SO I said well I have the referral right in front of me...would you call my Doctor to verify so I can make an appt?--"No! We dont do that!".
I said: "Well, u want me to show up at ur office, SHOW u my referral? Then make an appt and LEAVE?! Then come back AGAIN, for my appt?!
YES. Oh MY GOD! I said, I'll be down there then so I can HAND U MY REFERRAL THAT I DONT NEED, just to make an appt.
SHOULD I GO TO THIS DR ANYWAY?
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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posted
Also, no one told me I CANT fill my rocephin script at CVS.
I dont know where there is an infusion place? I'll have to figure it out on my own? Where to fill it?
I JUST KNOW: I'm gonna get this PICC line inserted tomorrow and I'm NOT GOING TO HAVE ANY ROCEPHIN TO PUT IN IT!!!!!! NOT FOR A LONG TIME!
So I'll have a PICC line...but NO rocephin for at least 2-3 weeks! Guaranteed!!
THIS IS SO PATHETIC, I'm ABOUT to lose my ******* mind!
HAs anyone gone thru this? I've NEVER heard of this level of incompetence before!!
PS: The Bloodwork was for coagulation/clotting tests/times etc..That at least makes sense!
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Congratulations James -- that is quite an accomplishment! I admire your perseverence, and it will be well worth it.
Hang in there. Many of us have to struggle to get proper treatment. This will really help! Please keep us posted.
Posts: 2557 | From home | Registered: Aug 2006
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I don't understand why you'd have to find your own pharmacy to fill script. My home health care infusion company's own pharmacy filled the script and supplies.
I didn't have to do anything. They dropped off supplies weekly on a Wed. The company would call Tues. to see if I needed anything specific.
I was Walgreen's Home Option Care Health company.
The LLMD's office set it up for me.
Best Wishes, hope all is smoother going now.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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I had to determine that I needed to call an "Infusion co." by calling my home health referral. They said they dont have anything to do w/ FILLING the script.
They topld me I'd have to call an "infusion" medical company. So I looked one up and called.
Now THEY say my referral isn't enuff. They need to not only talk to my Dr....but get all my records faxed over from previous Dr. also (Dr. C in CA.).
I had to twist my dr's staff's arms to call the infusion company cuz they couldnt seem to get a hold of eachother!!? So I had to DO EVRYTHING.
NOW, I got the picc line in yesterday and I'm STILL waiting on my infusion company to call back b/c NOW they say that my Aetna ins. allowed for the piccline insertion, but now is trying to escape from covering my Rocephin script...saying it was a pre-existing condition!
PLUS, the INFUSION CO. also says that my 1st dose has to be given AT MY Dr's OFFICE, in case I'm allergic they said.
So NOw I have a tube hangin' out of my arm and NO MEDICINE TO PUT IN IT!!- JUST LIKE I PREDICTED A FEW DAYS AGO...in the beginning of this thread. 2-3 weeks here I come!!!
Now it may be NEVER!!!!
I'll just keep the picc-line in until I can buy enuff rocphin on-line to dose myself at up to 3grams/day for at least 2 months. Starting w/ 1 gram a day and slowly increasing the dose.
I've fought SO VERY HARD FOR OVER TWO YEARS to get this picc-line installed and a rocephin scrpt written. Just like many of you, I've lost EVRYTHING because of this illness in the last two years! My career, friends, some family, fiance, Tens of thousands of dollars, THOUSANDS of MAN HOURS AN TWO YEARS of pain /agony!!...I will NEVER let ANYONE take it ouT!!!! Not 'till I'm cured.
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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posted
I'll need to start cleaning the ports pretty soon I imagine? Keep from getting infected?
ANyone know what I could do the keep the apparatus cleaned/flushed?
Can I buy syringes from somewhere, and fill them with clean saline or some OTC antibiotic solution? Flush out the ends of the tubes? I have two ports on mine. Is that what evryone gets?
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
OMG James! call your a-s doctor and tell them your situation!!!! your lines need to be flushed daily with saline and heparin.
You should have had a dressing change already. If you were receiving proper care, your dressing would have been changed the NEXT day after PICC insertion. That way they are able to check and see if everything is ok.
At least call the rx'ing doctor and tell them that you need a script for heparin and saline to keep your lines clear.
I can't believe that this three ring circus is happening to you.
Lots of home care nursing will not accept responsibility for first dose administration, so that is not out of line. Once it is done (1st dose) at the hospital or your dr. office, home care will then take over.
Good luck, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
James, what a friggin frackus you are going through by complete idiots. The whole thing should have been set up, your home nurse, the drugs should be UPS NEXT DAY AIR to you, and the first transfusion HAS to be done in a doctors office incase you are allergic. You are risking infection in that line, keep it clean, really clean, use alcohol, a brand new bottle and use it for nothing else. Don't double dip in the bottle ever.....get help now...what a bunch of freaking idiots are screwing you up brother....
Posts: 208 | From Hudson Valley, New York | Registered: Mar 2008
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posted
I've called my Dr's office several times the day I got the picc-line...trying to co-ordinate My home health care with them. A few times today as well.
Home health told me I had to find a Infusion place...the infusion place wouldnt try very hard to get a hold of my Dr.....so I HAD TO DO IT!
In fact TODAY (Day 2 of piccline.) I waited on hold for "head nurse" at my Dr's office for about 30 minutes..only to get the FASTEST speech I EVER heard in my life! (Remember those FEderal express commercials? When it ABSOLUTELY, POSITIVELY, HAS TO BE THERE OVERNIGHT? The guy SPOKE SO FAST it was funny?) She said: "I already faxed your records over to the INFUSION company!!". She said it so rudely and so loud and fast, I almost **** myself! Like they were ALREADY SO SICK of me calling all the time they didnt want ANYTHING to do w/ me!
Now, the INFUSION company is trying to tell me that my Aetna insurance is trying to pass the buck saying I have a "PRE-EXISTING CONDITION" and they don't want to pay for it!! They paid for the picc-line tho!?
SO I have the Infusion place FIGHTING w/ my insurance company now while I wait...developing an infection!! I CANT WAIT to sue these as**oles!
When I call my Dr's AGAIN in the morning, they're gonna treat me like **** some more! Telling me that the soonest I can get an appt is 1-2 weeks from now! I'll say what the sito is, and being smarter than I am (NOT!) will NOT listen...continue to treat me like I dont know ****, and there really isn't any POSSIBLE REASON THAT I WOULD NEED a STAT appt w/ him!!!
I'll have to go to the ER!!! I dont have the money for either!!! It'll cost me ANOTHER $50.00 for a co-pay to see the Dr again!! He doesn't expect to see me 'till his recommended follow up appt which he explained to me should be in 4-6 weeks from the day I get the picc line!!!!!!!!!!!!
I cant get Home HEalth until I get Infusion to give me my Rocephin and set up a 1st dose administration at my Dr's office. My Dr. DOES NOT KNOW ANY OF THIS!!!!!!!!!!!!!!!!!!!!!!!! AND the immigrant front office people that can't speak english very well, are BLOCKING me from getting a hold of my Dr. so I can tell him how this IV rocephin stuff works!!
So It's NOT because I haven't called my Dr., I've called multiple times both days I've had the picc-line!!
I've ALREADY PLEADED w/ my Dr's staff, Home Health Care and the INFUSION co. to do some thing! Cuz I have a tube hangin' out of my arm!!!
THERE HAS TO BE AN OTC solution?? Sterile saline w/ some kind of warfarin, heparin, coumadin sunstitute?? CUZ the "professionals" are gonna KILL me!!.
What do I DO???!!!!!
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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posted
Can I use a dilute solution of ETHYL alcohol and sterile water w/ a syringe I get from some free junkie clinic?
Ethyl alcohol will not POISON me unless I got alot into my blood stream....and it will prevent clotting and sterilize the lines right?
I'll have to figure out how to inject on my own tho. I've figured everything else out so far, so i'm sure I can do it.
These places are simply REFUSING to DEAL WITH ME! I'm telling them EXACTLY what my situation is. No one cares cuz they ALREADY KNOW BETTER THAN I DO....about EVERYTHING, yet I'm CONSTANTLY correcting them all about little things.
Ironicaly, I dont have a job...just finishing up my M.S. Biology (3 more credits.) with a GPA of 3.9. I would LOVE to have their office jobs right now. I would perform MILES beyond them all and yet they treat me like I'm the fool and their a just too smart to even talk to me!
I don't think I can handle being demeaned 1 more time!
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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posted
mY personal favorite thing that happenned was when I got the order and script to GET the picc-line inserted, they sent me to a clinic that cancelled my insurance. They didn't even bother to call and tell me.
SO they sent me to a nearby hospital. When I went to admitting the "nurse" there was visibly upset that I showed her a referral for a picc-line. She was upset I know by her crabby voice saying: Ha! You can't just show us a piece of paper and get a picc-line inserted here! We have to check to see if this order is actual;ly valid! I said my Dr;s # is right on top..why dont you call him?
OH! I will! WHy dont you have a seat while I verify this? She made me sit there for almost an hour!!! Then said Well I got a hold of your Dr...but we dont do picc-lines here (Real crabby!) anyway.---So why didnt they just say that in the beginning?--Cuz they were hoping to **** me over some how by proving my script/order/referral was fake!?
That was terrific!
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
First of all, I would document all of this. The ordering Physician is responsible for the PICC line.
In the real world this Dr. should be appalled at your situation and should have someone on his/her staff working on this stat. Heparin and Saline are not expensive and your doctors office should call a script in for you.
I don't understand this. Liability lies somewhere. EVEN IF your doc calls in script for hep and saline, no one has taught you how to do this....I really can't believe that someone isn't interested in LIABILITY here.
I also would not go looking for things to put in your line to keep it clean and flushed. Then you take away all responsibility from anyone but yourself.
If your doctor has an emergency # I would be calling now. You are not going to die, but this is nothing to mess around with either.
Worse case, go to the ER.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
James, you must feel like you are in hell on earth. You are so very angry, and I would be too. This nightmare is beyond belief to deal with IF YOU WERE WELL, much less sick with this stinkiing horrible Lyme disease.
I am going make a suggestion that you won't like and I don't blame you, BUT, as the old saying goes, you will get more flies with honey than with vineagar.
You must be starting to see that even the least important of this crew can thwart your best efforts. They have the power to help you or make your life miserable.
Try very hard to regroup, try very hard to be nice to these disgusting excuses for medical help, FOR YOUR OWN SAKE.
You are so close to your goal.
Good luck man!
-------------------- 3 Strains Mycoplasma and Chlymedia 2001. After treatment fine for all 2004. Major symptoms since 2005. Diag Aug 2008 Lyme. 400 mg/d doxy 500 2/d Ceftin Posts: 164 | From Texas | Registered: Jun 2008
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I think u said it all! This "modern" era of health Care... Insurance companies RULE everything!
NO ONE wants to take responsibility for ANYTHING!
Therefore the entire healthcare system is almost completely paralyzed!
Dr's only want to take responsibility for the VERY MOST ROUTINE aspects of healthCare. The problem w/ that is that 99% of routine healthCare that DOES occur these days IS NOT EVEN NECESSARY!!!! Meaning u DON"T REALLY EVEN NEED a Dr!!!!
Like Cold and flu season... Dr's offices are PACKED w/ people coughing and sniffling!! WHY!!!!!!!!!!!!!!!!!!!!!!!!!????????????????????????????????????????????????????????????????????? By definition, Dr's CANNOT DO ANYTHING for colds OR flu's!!!!!!
Dr's wont even prescribe medicines that have almost COMPLETELY no chance for abuse or addiction...UNFORTUNATLEY these medicines don't work! And are in almost all cases un-necessary!!!
If you want to help people w/ their health...don't become a Dr. cuz they can't do anything for you!
PS: Up thru now, I have doen nothing but smile and take it. Sorry, but I vent on u guys instead of my Dr's and their staff. That's all over with now. I've been going thru this similar routine for over 2 years now.
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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I called again this morning to the infusion company, and they said that I'm denied cuz its a pre-existing illness.
So I said OH MY GOD! Well someone's gonna have to get off their butt and at least show me how to clean/flush out the lines to keep me from getting an infection.
And some fruity sounding guy gets on the phone and starts scolding me for saying that "Someone's got to get off their BUTT'S and help me at least clean/flush the thing out to avoid a serious infection.
WOAH! HEY! FIrst of all SIR!...you aren't gonna get ANYWHERE talking to me that way! I don't need to hear that kind of talk from anyone! I'm not gonna help you if you talk to me like that!
I'm thinkin' why? You're a 2nd level manager of the customer service deptartment of a medical infusion company? If you dont EXPECT to hear from an upset customer now and then....YOU ARE IN THE WRONG LINE OF WORK! PLUS!....HOW THE HECK IS THIS GUY GONNA HELP ME GET MY CLAIM APPROVED BY MY INSURANCE Company? I'm gonna be the one that does that anyway.
So I was demeaned and treated like I dont count over and over again for the last few days by several medical associations and I JUST ACCEPTED IT.
WHY should this guy be immune?
Anyway I finally got my insurance to approve it!!
Oh, and the cost of getting it on-lne is SLIGHTLY cheaper when you add in the cost of the nurse visiting. The Rocephin was $30/dose...so $90/day when in full gear. Plus $90/nurse visit.
Since you have to be 1/2 dead by the time you get IV treatment, what r the chances u can afford to pay all that? Probably have been out of work...etc...
Anyway, you were right about the using "HONEY".
I still dont see why I have to get the vinegar all the time?
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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I get approval over the phone from Aetna that I CAN afterall, get the Rocephin!!
I go down to infusion...get the 1st dose, leave...then they call back and say some nurse from Aetna called and said I'm REJECTED AGAIN!
Now i'm responsible for all the cost of this 1st visit...and can't get anymore until i appeal the decision...they tried saying that will take from 7-10 business days!! HAHAHAHAHAH!!!!
Ya know, I should just listen too my insurance company! Wait, and risk the picc line getting infected...the infection will then threaten my heart valve(s)and I'll have to get my chest cracked open and have heart valve replacement surgery!
That way I won't have to worry about paying for any of this crap anymore! Posts: 269 | From Valencia, CA | Registered: Aug 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
What a nightmare of a situation you are in. It truly scares me to hear how you have been shuffled around and basically left to fend for yourself.
Sad thing is I shouldn't be surprised anymore. Seems like having Lyme predisposes people to these kinds of situations.
I can only pray that things get better and everything works out for you.
Has anyone taught you how to care for your picc line yet? Even if you can't start Rocephin for awhile you need to be able change the dressing and flush the line to maintain your picc.
Please please take care of yourself James. I'm praying for you.
Posts: 5237 | From here | Registered: Nov 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hang in there James. You are in my thoughts and will prevail in this.
Posts: 2557 | From home | Registered: Aug 2006
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posted
Yeeuh! Now they (Insurance Co.) approve it again with some arm twisting and some quick record faxing.
The only thing is they only approved me for 30 days x 1 gram. I have (+) frye test for Bart too. Rocephin aint gonna help w/ the Bart. So, I filled more Plaquenil 200mg BID, and Zithromax 500mg q.d.
Anyone know where I could print out something that I could show my Dr. to convince him to INCREASE my Rocephin to 3 or 4 grams/day? And that will show him Rocephin doesn't hit the Bart.?
I took my 2nd gram of IV Rocephin today and felt pretty good. Still had fever (99.6F) diarrhea (20 years.) pain and HEAVY night sweats...but I'm so used to it I still consider that to be feeling good. Therefore I'm sure I can tolerate 3-4 grams/day.
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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posted
Simply put, you need a new doctor, a real LLMD.
They are used to handling these things and never would have let you sit without heparin, flushes, etc once the line got put in. I'd start looking for a new doc asap.
Posts: 339 | From nowhere | Registered: May 2007
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posted
Dr. C in, CA -Harvard Graduate who practiced in the epicenter of Lyme Dz for 10 years b4 moving west, is turning out to be a No show.
She told me she was too afraid to order my IV's, pain meds, or anxiety meds.
Luckily my pcp in Vegas did his residency w/ her. So he prescibed the IV rocephin. After I broke down in tears in his office.
There isnt any LLMD's here in Vegas.
What I need is some documentation that will convince him to increase my dose AND add something to hit the bart. Anyone know where I might find that?
ANyway, I now have everything for 30 days of cleaning and they only mix up 1 week of rocephin at a time. I guess it only stays fresh for 1 week to 10 days? Gotta keep it in the fridge too.
You push saline first, then the antibiotic, then MORE saline, then Heparin. They use the acronym SASH to help patients remember.
Also, I guess u can get a family memeber or friend roomie to come down and the nurse will show them how to change the dressing and disinfect the entry site. That can save u lots of money on nursing fees. They want $75.00/week from me. Too much for me to afford.
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
well, they have the protocol for flushing correct. That is a start.
James one gram of Rocephin daily is a very low dose. If you are only getting it for a month you need to be 4 grams daily for 5 days and off 2 at least. I was 4 grams 7 days week, for 4 months.
You might want to do a pubmed search for Rocephin and Lyme dosing.
IIIIIyyyyyyyIIIII.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
I know my rocephin dose is really worried me.
I told Dr. its normally started at 1 gram and escalated to 3-4 grams/day. I dont have an LLMD here in Vegas...so I'm trying to TEACH my Dr's how to treat Lyme. NOW THATS friggin' hard! I am getting somewhere tho. We'll see next week if I can get him to increase to 3 grams w/o messin' w/ 2 grams for a while.
MY ace-in-the-hole is Dr. C in cali. She is there for consults when my Dr's here dont want to "BELIEVE" me. The info is allou there! I dont understand why my Dr's cant just LOOK IT UP if they dont believe me?
He wrote me for the 1 gram/day for 30 days w/ 1 refill. I was happy to at least break-the-ice o things.
However, if u were reading early on, you saw all the trouble I had getting my crap insurance to cover the rocephin.
They approved, denied, approved, denied again, approved... So I imagine after my 1st 30 days is up, my insurance will laugh at me when I try and get another 30 days at 2 or 3 grams/day, let alone 4.
I'm also on 1,000mg Zithro and 400mg plaquenil.
I imagine I will have to start working again and pay for my own rocephin. Therefore I've been taking Fentanyl and LOTS o vicodin 10/325's and interviewing all over the country. I just got back from San Jose today. Dang traveling sux when ur herxing!
The pain meds will allow me to work thru the pain I believe.
I plan to start working in Feb. So I may have to take some time off the rocephin until I get the money to pay for it, at a real dose.
I have Bart also. I've been thinking of going w/ IV Zithro since I got the picc line. Id do levaquin, but I'm not so sure high doses of sublingual Mg2+ will prevent tendon damage?
Optimally, I'd be on 6-10,000 mg amox, 1,500 mg Zithro, 400 mg plaquenil plus the 4 grams of rocephin/day. Hold that as long as possible and see where that gets me.
What do you think I should try?
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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bettyg
Unregistered
posted
james, i have no knowledge, but stoppped to give you a
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I'm finishing up my 4th week on the 1gram/day for 30 days. I had another PCP appt. He increased the dose up to 2 grams/day. Plus he gave me three refills on it.
Feeling pretty good actually, sleeping a little better. Still need a benzo. Am on stronger dose of pain meds, so I can function basically like normal.
Plus he filled me up for 3 months of Zithro, plaquenil, and valium.
Finally, a good Dr. And he's a PCP prescribing me IV rocephin. That's pretty good of him I think.
Plus I'm on increase in pain medicines. Mainly an increase of the new mylan duragesic fentanyl pain-patch, and some Vicodin. These drugs will allow me to go back to work, Work thru the pain. I've already gone thry the worst of it I think?
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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posted
Well, My Aetna garbage insurance screwed me some more by rejecting my Dr's recomendation of AT LEAST 3 more months of IV Rocephin at 2 grams/day.
I finally got evicted from my apartment in Las vegas and am now living w/ my Mother in buffalo, NY.
I go to a PCP out here to get some amoxicillin to replace the Rocephin that my insurance co. screwed me out of...and all I got was a referral to an infectious dz doc! MY INSURANCE DOESNT EVEN REQUIRE REFERRALS!!! So why did I pay $40 to see this PCP?--I have NO friggiin idea!
Doc's are SOOO pathetic sometimes!!! I could (And DO for myself.) do a better job treating people with a computer search engine and a prescription pad!
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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