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» LymeNet Flash » Questions and Discussion » General Support » IV PICC line update

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Author Topic: IV PICC line update
HorseHelper
LymeNet Contributor
Member # 30255

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This is unbelievable. I shared a few things about Lyme with my Infec. Dis. Dr. (she knew nothing about Dr. Burascanno. Wow! Anyway, I asked to keep my picc line in. Why? Because she mentioned it possibly being reinserted later. Oh, no! I said ," leave it in please". She complied.

Picc has been in one month. I wait one more month for blood work. Then if additional abx is needed, GET THIS! Dr. will I give me 2 grams (instead of l gram prior). I told her that 1 gram is not sufficient from my research and other individuals I know who have Lyme disease. She even looked over an article I brought.

I had been careful thus far on my conversation with her, but not anymore. Why? She knows that a TV station is interested in my story about Lyme and she said that's fine, but she is camera shy, she will not do the interview.

This is MY health and if I don't speak up about it, even at the cost of being let go as a patient (which hasn't happened), then it's my fault. I'm the one slowly dying as the rest of us are, right?

Raise awareness. Get brochures at: www.LymeDiseaseAssociation.org. 888-366-6611
I love giving them to friends, and almost ALL my friends have never heard of Lyme, how sad!

Cheers,
HH




[Big Grin]

--------------------
I'm glad to know I'm not alone
Some peace of mind I somehow find
Through folks like you with Lyme!

Posts: 240 | From An infected state | Registered: Jan 2011  |  IP: Logged | Report this post to a Moderator
just don
Frequent Contributor (1K+ posts)
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ANY doc that is relying on testing to SEE if you need further treatment, isnt a LLMD!!!PERIOD!!!

That is the biggest crock of crap I heard all day!!

FIND a real deal LLMD and get there!!!! Whether that means traveling or not. Penn. or Missouri seems within a days drive,,,or fly.

--------------------
just don

Posts: 4548 | From Middle of midwest | Registered: May 2001  |  IP: Logged | Report this post to a Moderator
just don
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Michigan is maybe another option.

--------------------
just don

Posts: 4548 | From Middle of midwest | Registered: May 2001  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
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Horsehelper,

Hate to be the bearer of bad news, but if your insurance is like most people's it sounds like you already got your 28 days of IV antibiotics. It won't matter to them whether it was at the therapeutic dose of 2 grams of Rocephin or only 1 gram -- most simply go by days of treatment.

I agree with Don -- if you are sick enough to need IV antibiotics then it is in your best interests to find a doc who knows what they are doing. Experience really does make a difference in treatment outcomes.

Have you been tested or treated for coinfections? Does the doc know to treat the cyst form of lyme? These are the things that inexperienced docs do not know about and that may keep someone sick indefinitely.

Bea Seibert

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
HorseHelper
LymeNet Contributor
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One must have money before one is adequately equipped to handle the expenses. My disability is still in progress and the attorney said it may be a little while due to the way social security operates.

It sure would be nice to travel anywhere in the world, however, I need the GREEN!

For other medical reasons, traveling is difficult.

HH

[hi]

--------------------
I'm glad to know I'm not alone
Some peace of mind I somehow find
Through folks like you with Lyme!

Posts: 240 | From An infected state | Registered: Jan 2011  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
Frequent Contributor (5K+ posts)
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Horsehelper,

I totally understand the financial constraints regarding treatment. On the other hand, hubby ended up wasting years and lots of dollars on inadequate and ineffective treatment.

Testing still is horrible, but there is so much more knowledge about these diseases than there was 10 years ago when hubby first got sick. But the reality is that the more that comes to light regarding tickborne diseases the more obvious it becomes that a specialist (LLMD) is needed. Regular docs just don't have the time and interest to learn all they need to know about tickborne infections.

As they say -- hind sight is 20/20 vision.

Bea Seibert

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
HorseHelper
LymeNet Contributor
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Bea,

I know you are right. I just have to drum up $800 to pay the LLMD upfront. This Dr. is 25 min from home.

There is depression so many days. I cried yesterday. I feel like a real burden on my husband, there are many days I do not want to go on.

thx for caring. thx. for your insight, I know what I have to do, believe me.

Byeeeee, [kiss]

--------------------
I'm glad to know I'm not alone
Some peace of mind I somehow find
Through folks like you with Lyme!

Posts: 240 | From An infected state | Registered: Jan 2011  |  IP: Logged | Report this post to a Moderator
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130

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Why you little sh!t!

tell that hubby I'll meet him today if he wants

and I'll give him a piece of my LLmind!

So....dry up those tears HH an get back in

the saddle again!

(wait a min....is that a song from days gone by)?

I'm back in the saddle again
back where a tick can get in

I did'nt feel the bite
but I'm treat'in just for spite

Can't let down those kids this spring
but U bet I'll warn em of a "ring"

and
I'll be back in the saddle again
maybe I'll be there with a friend

as long as I have HIM
I'll face this with a GRIN

and
I'll be

Back in that saddle again!

(Boy, I need to brush up on my song lyrics)!

YFIChrist
zman


Cuz a friend

--------------------
I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman

Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
HorseHelper
LymeNet Contributor
Member # 30255

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Funny Tony!

HH
[loco]

--------------------
I'm glad to know I'm not alone
Some peace of mind I somehow find
Through folks like you with Lyme!

Posts: 240 | From An infected state | Registered: Jan 2011  |  IP: Logged | Report this post to a Moderator
   

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