In the last week I given my cell # to 2 supposed newly diagnosed Lymies who wanted LLMD information because I no longer feel comfortable giving Dr names unless I have chatted live with a new person.

Neither one has called me. I can't figure it. If I was newly diagnosed and a bit confused I'd jump at a chance to talk to someone who could possibly help me.

Okay, She is not on the LLMD list, but she IS willing to read, and she IS willing to leave no stone unturned to figure out what is going on. She also at no time disregarded Lyme as the problem. She just wanted to be absolutely sure it isn't anything else, I think that is good.

She is giving this lots of time, thought, and she is doing a mountain of research on top of reading what I send her. She communicates with me and makes herself available, she also reviews line by line every test we do in a clear way, stopping to listen to what I think. She also is documenting everything as we go along. She is a firecracker and will not be pushed around. She is doing things that totally advocate for me as well as document everything on every point, that is good medicine, it also may be a step in the direction of slapping mainstream doc's who are dismissing this as a problem.

I am not sure a month from now I won't be back begging for help. But I am sure that standing my ground, documenting what is happening and having someone willing to do that and advocate for me, can only accomplish good things for everyone else. I am willing to try it.

I am appalled at what I have read and what people have suffered through. I am angry that people have to suffer. I am determined to push forward and accomplish something.

I am sick, I have someone who is advocating for me and taking me seriously. Perhaps that will change. Perhaps I will get sicker and perhaps I will get well. But the bottom line is in the process I will have brought it to the attention of one more person willing to make a difference.

There is no doubt that there is much to learn about tick borne illness and there is much that needs to change.

The support available here is wonderful. It is scary to be sick and have people not take care of you. It is scarier still to be handed a script for something you don't need and be dismissed. Don't think for one minute that the support provided here isn't important because it is invaluable.

I am grateful for the support, and I am grateful for all the wonderful information I recieved. I have put the info to good use. I am not running from this. I also will not be pushed around. I am going to get better and while I am on this trip, I am going to accomplish something.

I know I am a newbie on this site. None of you can ever know the lifeline you have thrown to me. It is my nature to fight and stand my ground when I know I am right. You have provided some wonderful tools to do that and that is what I have done.

I am grateful to you all more then you can know. I have had a tough week, I have second guessed myself, I have second guessed many things. You have all pulled me back from an icky place where my sanity was tested. For that I thank you and thank you. Please know that I am going to continue to stand my ground and I am going to share and share and share until people are tired of hearing me.

I think having an LLMD is VERY IMPORTANT too....but you have to decide what is right for you at this time. From what you've said, this dr is VERY willing to take the bull by the horns.

If you will, please come back and tell us what you're taking and how much, so we can give you some feedback. We don't want those keets to get the upper hand!

My symptoms seemed to have been cycling this past week for the better, of course everything started to improve for the better... any idea if I am in the wrong part of the "keete" cycle in terms of effectiveness of this iv.

The doc warned me about the potential for "placebo" effect....(yea right!) I told her that as sadistic as it sounds I hope I totally hrx so that it proves once and for all that lyme is what is going on.

SO, anyone want to tell me what to expect now? I feel pretty much the same as usual except for a tad more foggy and headachy.

Is it inside your elbow or in your upper arm? The upper arm one was a little more painful as it was way bigger and they put a couple of stitches. No way that sucker would clot though. My nurse said, "Wow that's like a garden hose".

I remember being more freaked out about the stitches than the gaping hole in my arm. Well, I'd had a picc line before but never stitches.

So what are you running through that thing? (I may have read it if you said further up the thread but can't remember.) I'm not sure what you can expect, I think it's different for everyone.

Foggy and headachy sounds about right for now, though. Rest as much as you can and go easy on that arm. Congrats on the new picc and treatment, too.

It is in my upper arm, and it is bugging me big time. They had to sick me a couple times extra, 3 anyway and it was miserable in spite of the lanocaine. I am getting the antibiotic that starts with R I think. The home health nurse is coming tomorrow to teach me what they want me to do and change the dressing.

Then I will do this on my own except for a once a week check up and bloodwork. If I hrx at what point does that usually happen? I hope it does happen because I am tired of as tincat puts it the doc trying to pin it on anything and everything else.

My head is killing me and I am pretty sick to my stomach. What is up? Is this a pik/antibiotic issue or some hrx related thing.....

Man if I thought I was sick before.....this is 100 times worse! I would try to sleep except I am waiting for the health nurse to call and come. Anybody had this kind of Pik or pain? What about feeling so sick after just one dose? Thanks! Tin Cup???

hang in there!

for you!

Nobody prepared me for this at all. I thought I was going to get a simple run of the mill IV.

I am so sick holy cow!

Trying to decide if I should wait for the nurse of call the doc.

If anyone has experience with this kind of pic and feeling this bad I would love to hear from you.

Don't want to be a whiner calling the doc over every little thing.

Thanks.

It sounds like it ain't pretty.

This is good news and bad.

Bad because you gotta be in your body while a whole buncha spirochetes bite the dust.

Good because it is proof positive for your nice doctor that Lyme is the culprit.

Wish she could come over and attend you bedside.

Is there anyone who can come help you out?

Sounds like things are gonna be rough for a while.

But I think it's a good sign.

Call up your doc and tell her what's going on.

But don't let this herx make you "pull the plug", so to speak, on your PICC -- absent an infection, that is.

Because when the herx passes - and it WILL - you are almost gonna feel like a new person.

(Till the next one, anyway.)

Hang in there.

Lots of others will be along.

We're hangin' with you. Keep the faith, you're on the right track here.

Michelle M

May want to call your doc and let her know if there's no improvement in the PICC pain, or if the fever persists. It's possible to get bacteria in the PICC which can make you very ill. Always be cautious of sepsis, nasty stuff.

For the future, your homecare company should have a 24 hour hotline where you can call if any problems arise.

And here is some info for your doc: http://www.lymeinfo.net/lymefiles.html

Cheryl

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Spent most of last night in the ER. Seems the picc line was too far into my aorta and cause some pretty severe spasms. They removed it and put a temp line in my arm.

Sigh....

This morning I am sick big time. Major headache, guts rumbling like and earthquake and my joints aren't the worst they have ever been but they hurt.

I am guessing this is hrx? I don't know for sure but my eyes hurt and my head is throbbing so I am going back to bed.

Thanks for all the posts, you guys are great!

quote:

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Originally posted by DBag:
Good Morning Everyone;

Spent most of last night in the ER. Seems the picc line was too far into my aorta and cause some pretty severe spasms. They removed it and put a temp line in my arm.

Sigh....

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Bummer! they should have checked the PICC when it was put in! Yikes! I'm so glad you went to the ER to have it checked out!

The pain and misery sounds exactly like a herx. Hang in there! I feel for ya!

Here's your hug!