The initial phases of IV therapy can be very difficult if you have a high infection load being killed off.

That said, you should keep in touch with your LLMD on symptoms, so he/she can be sure this is not any sort of adverse reaction, and to also asses that the response indicates therapy is working. Having no response (even though yours is a worsening of symptoms) would be more worrisome, IMO.

It is also up to you and your Doc to decide whether "backing off" is necessary..a careful decision with IV that is a much different situation than backing off with orals is, because if it is determined it is a true Herxheimer response you are having (and you are in no "danger" as far as a response that is too severe) ..stopping IV at this early stage in the game can be harmful.

I can share with you that my son and I , when initially treated with Rocephin, did have a true Herxheimer response, and felt like we'd been hit by a truck every day for two months. My son had greatly exacerbated neuro-psych symptoms with that.

In OUR cases, with close communications with Docs..the concensus was to stay on through those difficult periods, that missing a dose during the kind of die off phase we were in, would do much more harm than good. This is a decision for Doc, as there is particular considerations with IV that are different than other therapies.

We had very severe infection when we started. You must have this assessed by your LL Doc, but my guess from our experience and from what I've read is that at only day thirteen of Rocephin, it is quite possible that you would feel this way as a result of die off.

Please check with Doc on it, obviously..

Are you on orals, or is Doc planning to add orals once stabalized on Rocephin?

That is important in Rocephin therapy to ward off cyst formation. (use of a macrolide, and or Plaquanil, or both were used for us initially. Something more powerful such as Flagyl will be considered near the end of IV)

Do you have help? Because if all checks out as die off response, you will need to buckle down for some time feeling unwell.

In a positive note, following a long die off phase, both my son and I experienced steady improvement in the months following.

Mo

I fully agree with MO, are you being given a "cyst buster" abx with your treatment or does you doc plan to give you one after the IV Rocephin? That is very important for you not to experience a severe crash and worsening symptoms when you stop the Rocephin.

Remember this statement that my LLMD, www.drcharlescrist.com says, "It is the TURTLE that wins this race, NOT the HARE."

Hang in there, but, as my LLMD says, also, if Herxing gets too bad, then you may have to skip a dose or two of the abx in order for your body to get back to attacking the infection rather than attacking your body.

Have you asked you doctor about plusing your abx? This, too, helps those who have severe Herx reactions while taking abx.

It will not set you back to stop abx for a day or so and plently LLMDs suggest this when it gets to bad for you to handle.

Of course, I am not a doctor, only relating what my doc has given to me in his wonderful handouts that explains everything one would want to know about Lyme and treatment for LD.

Rosemary

PS...Please let us know how it goes, OK? You can do this by clicking the Post Reply button found at the top and bottom of this page you are reading.

Oh, and his explaination of a Herx is this:

Intense Lyme ymptoms that you have experienced and new one that you may not have experienced before.

Don't you want to kick all of the above well wishes right in the teeth!

HA!

This pain SUCKS!

No 2 ways about it!

You are stinking miserable, feel like you are gonna die, and death even seems better sometimes than what you are going through right now.

You hate everybody.. and mostly hate yourself.

You are slimy.. something no shower can make go away...

You are dragging butt..

You hurt when someone even LOOKS at you.

You are closer than you have ever been to telling EVERYONE where to "get off".

When the phone rings your first thought... after your head stops bouncing off the walls from the ringing noise... is..

"Who the ^%&*% is that and what do they want?"

If you had a dog.. you would want to kick it.

If you had the strength.. you would put both hands around the doctors throat and want to choke him for doing this to you.

You wonder if you could dump the meds in the toilet, flush fast.. and just pretend you took it.

You want to cry.. but you already know that it doesn't do anything but make your eyes swollen and your head hurt more.

Am I close?

Make this misery work for you!

Use that angry energy in positive ways to fight.

DON'T LET THE TICK WIN!

Shower several times a day to get the toxins that are oozing out of you, off your skin so they aren't re-absorbed.

Drink a gallon of water a day.

NO... I am NOT kidding.. a gallon!

Add a few squeezes of fresh lemon to the water.. or make some sugar free lemon aide.

Do your best to sleep it off.

Give your body the rest it needs to fight the effects.

Warn family and friends to stay out of your face until you feel better.

Take a piece of paper and write in BIG LETTERS across it...

I'M SORRY!

Put it in your pocket and everytime you respond to someone.. pull it out and hold it up for them to see.

Cause you WILL get on their nerves...

Paint your toe nails all different colors.

And last.. but not least..

Write on ten sheets of paper.. in BIG letters...

I WILL GET BETTER!

Then put a copy in each room.. so you won't miss seeing it.

Then.. when you have the energy.. come on up here and kick my butt for giving you a hard time.

"Herx now, or imagine the more powerful herx that comes if I allow the bacterial load to rise; and ehrx later."

TRout

PS...Agreeing with the fine ladies above on everything...now read my signature below.

Tincup could not have put it any better. I felt like something that is scraped from the bottom of a shoe while on Rocephin at first. It did eventually get me over the hump. I said some really nasty things to my Drs. & Nurse that I had to apologize for later. It was better than killing them. I did think I might die a few times - literally. I went to the ER a few times. I even halucinated. My health care professionals always backed me off a bit when I behaved like a woman on the edge. (probably for their own safety -lol)

Just an FYI: I threw in the towel after 12 weeks, switched to orals and went downhill like a semi without brakes. I then changed my life, diet, exercise, mental attitude, dropped the people who were not supportive, stopped blaming the medical community, etc. I started to think positively and decided to take on Lyme and my health with the comviction that I will get better. I went back on Rocephin again and started treatment for Babesiosis. Talk about a herx! I am now on Bicillin and Mepron. Still a long way to go.

I can tell you that I drove myself to my Dr's. office this morning to go over my blood work. He looked at me and said, "Did you drive yourself here"???? Yup, I did and that is progress.

If you can, hang in there. Mo and Rosemary and Loco Tincup all have very good advice.

If your GI tract can handle orals, I would consider that route. Mine can't.

I've been there and while that may not be too consoling to hear, the truth is, you will get better!

You need to focus on Stacie right now and let the rest just fend for themselves.

Herxing is never, ever fun. I still go through it. Im having one today ( and probably for the next ten, joy joy)

But it does get better!

I'm no Doc, Mrs. Tit, but if your not herxing, I'm a monkey's uncle!

I'm so sorry for how horrible you feel, I wish I could take that away..but I can't.

I am happy that it seems you are responding to this drug.

All I can do is offer friendly advise on what I see in your post.

First thing, I know about that AM sleep being the only time for really deep sleep. You MUST turn off the phones and the machine, and make sure everyone in the house does everything possible to allow you that time and goes out of the way to keep things quiet.

Next, I want to make just a suggestion about your Mom. Unless it is uncomfortable for YOU (then it may make things worse)..but unless it would make you feel very uncomfortable, or you think she would be against the treatment itself in any way, right now I would consider putting aside any worry about her feelings in this. My Mom is also a registered nurse, so I know what you mean about them not wanting to see their children sick..totally diferent than patients they work with..(though, my Mom is coordinating a Hospice house, so the sranding joke is that I can't really compete with what she is used to. But..I came close..and i know she was allot more worried than she ever said)

But as a nurse and a Mom, she could offer you much needed help during this time where you have an opportunity to utilize this very hard hitting treatment that sounds like it's working. Maybe if she was closely involved, she would actually wory less because she is more hands on.

Same goes for everybody else..hubby, hubbie's Mom, friends, ect. Anyone who can offer you support, take it. This is all about you right now and that is as it should be.

I think your husband sounds very supportive, and maybe if you keep telling him what you told us about how you fel while you are this sick, he would just have more insight, but sounds like he'll be there no matter what.
You can tell him you will be angry, and don't mean it, can't help it. he can help with food, and baths, and keeping thigs as comfy as possible. Make sure he knows how intensive this therapy is, and that getting worse is a sign of progress.

For all support people to know..you are doing a form of chemotherapy right now. That's an accurate description on this kind of regimen with this kind of response. Sometimes, when you put it that way..and that you are treating and responding to killing off a massive CNS infection..it takes the mystery out of the word "Lyme"..and paints a more clear pisture of what is really happening.

You know, you're not going to be forever this way..in fact, this process is going to deliver you to feeling better. Best to practice survival swimming, and when you are out in the water and so tired, don't try to fight the curent or you will do nothing but axhaust your resources. Now is the time to just bob abd float, and put your face up and breathe.

Reserve energy and don't fight it, and let the current take you. When you are stronger, you can start swimming to shore.

The insurance company likely had no problem before because you were on orals. Mention IV (a "high dollar drug" to them) and the whole game changes.

The best you can do is have someone help you organize, and provide them with all required Medical info (Doc's office can help, too)..maybe have someone else call and ask for a copy of their guidelines on IV for LD..

But try as much as you can not to allow the emotions of the situation drain you. I know it is a crime that they do this to an ill person in the middle of intensive therapy. They did it to us, too.

A tip is.. it helps in conversation and on medical records to use terms other than Lyme when appropriate. "Diffuse cerebral function", "infectious encephilitus", "antibiotic responsive condition", persistant infection..or other accurate terms for your symptoms as a result of the illness, or terminology for the actual infectious state.

Try and think of a savvy friend or family member (husband or other) with some real gumption that you can enlist to help you with this.

If it gets to where it looks like they will deny, we can help with that, certain contacts to make, strategies, ect...

But right now, you really have to focus on getting through this time.

Peace and rest,
Mo

As for your husband...yes, he's frustrated because he can't make it better. So just thank him every time you can muster a "thanks." As long as he feels appreciated, you'll both make it through this.

But please, back off the meds if you can't take it. You can do more harm than good, in my humble opinion. Do you have something for the pain?

You'll make it....and you'll feel SOOO much better after belting Tincup a big one in the geezer!

May God Bless you and give you strength.

As for my friends they seem to not be around while I need them. I have a few that are here to an extent but they really don't know what to do. When I hurt I just hurt and cry and there is nothing that they can do about it. Sometimes it is pretty rough and all I do is lay here and cry.

I told my husband about Tincup's thing about the signs with one saying "I am sorry" for to carry around and when I say something to hold it up. He said "where's your sign"
He is very good to me and has been as helpful as he can while I stress him out. LOL