posted
Hi Kathy , now the tequilla rounds like agood idea , but I'me sure the insuing headache wouldn't be wurth it !! Nice to see your sence of humor again !!! You know I'me pulling hard for ya !
Posts: 97 | From West Chester ,Pa. | Registered: Aug 2006
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posted
I enjoyed reading everyone's post on this subject.
I am almost finished with three weeks and doing GREAT betteer than I have in 5 years. I am so mentally clear and energetic I can't believe it.
I am sorry some of you are having herx's.
Some of you have mentioned swallowing, etc. My doc said people have allergicc reactions to rocephin. She makes my daughter and I take a benadryl a half hour before.
About the gall stones issue: My other doc said to take curcumin (sp?) 3 tabs 3 times a day. Its a concentrated herb that is in tumeric. He said it will dissolve any potentially forming stones. I got it at whole foods.
Insurance cut us off ... and we only have two days medicine left. We both need this for 3 months minimum (I think my daughter needs it for a year). We have ordered the generic from mail order pharmacy, but they won't be shipping it until the 8th. Then it has to get mixed in a sterile fashion So there will be a lapse in tx (RATS) and my doc wants me to take ceftin while we are working out all the bugs (no pun intended).
Human Being: I am concerned you are only on rocephin. I know dr's have differing opinions, but I think the majority of ILADS drs want two at a time. We take biaxin (daughter takes zithromax) along with the rocephin.
As I said, I am staying away from flagyl because of nerve damage issues and don't know what to do about cyst busting.
One good thing is I have so much energy, no pain, and clear thinking. One bad thing is that I don't have mucch tolerance for BS. I want to be kind, but what comes out of my mouth is often challenging, too direct, and maybe slightly abrasive. I think I am just plain angry. But I am saying to myself: You've been through a lot, it is very scary, and who wouldn't be a little angry and abrasive at times, given these circumstances. So I forgive myself.
Meanwhile, doing a year of various abx and now doing the rocephin/biaxin seems to be really working. Fingers crossed.
posted
Jeff: I am only on Rocephin for right now. I just started IV therapy about 3 weeks ago. Although I am on the usual anti-fungal and an antibiotic which will prevent (hopefully) any damage to my gallblatter. My doctor plans on adding in meds as I proceed through this therapy-but doesn't want to over-whelm my body all at once. I completly agree with her method of treating.
How old is your daughter and where do you live? I am 22yrs old and was diagnoised a year ago. My LLMD thinks I will need a year of treatment to recover as well and I can only hope my insurance doesn't pull my cord before then! Good luck!
Human Being: I would definately talk to your doctor about adding because it is important but maybe your doc has a "plan" already.
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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posted
Thanks guys, I am going to ask him about adding biaxin back in but he isn't really ILADS literate (he is an ID who sees tons of lymies in CT and puts everyone on IV)...
I think he will let me do what I want with add ins. Smiles, do you think your doc would add in?
Jeff, you have every right to be a mean angry SOB...it is part of this horrible disease and I think we have all been there. I hate that your insurance cut you off. If you and your daughter had cancer it would be on the evening news if they tried that crap.
Check with your insurance, mine will allow IV abx extended if it is prescribed by an ID, rhumatologist or neurologist. If you can get a compassionate ID to write to them, maybe they will continue.
Had a string of good days. Way more energy and managable pain levels. Today I have a headache and my jaw hurts but it's bearable.
PICC arm hurts around the elbow.
Kathy, hope your having another good day...
Quote I heard recently: "You need to have gratitude in order to feel joy." Carlos Santanez
Blessings, Kim
-------------------- We are spiritual beings on a human journey...
posted
I was away for a few days and was glad to check back in and see how everyone was doing.
I have to agree with Jeff...it sounds like most docs use 2 abx together. I'm taking Azithromycin with Rocephin.
I alsp wanted to share my good news...one of the main issues I've had is muscle weakness which shows in my blood work. The number should be below 165 and has been up to 2663. After 2 weeks of oral and 1 week of IV, it has dropped to 1271!!!! My rheumy said abx wouldn't bring that number down! HA!!
I had a bad herx over the weekend but it really just made me more confident that this is the right treatment. I laid in bed with every possible joint groaning in pain and wondered what didn't hurt.
Now that I know my blood work is showing improvement, I can handle the joint pain because I'm just imagining those suckers dying!!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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posted
Is anyone else, or has anyone else, had the experience of being ennervated by the rocephin?
I have normal energy back for the last four weeks. But the rocephin seems to also cause huge nervous energy, agitation. It feels like I have taken ritalyn or something . . . too stimulating.
LLMD said she hadn't seen that before. Most people have herxs. I have had none. Only feel good, but ennervated.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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OK, I feel like I am my own science project. I have some artemisinin that I bought months ago, and never used.
Today I took some just because I wanted to. Last night I had the night sweats really bad.
Immediately after taking the artemisinin brain fog lifts, and depression does too.
I took 200mg this morning, and another 200mg this evening. I am now herxing big time.
My breathing is better, and my eyes feel better. However hips, legs, ankles and hands are really hurting, but my head feels much clearerbut have pressure at the top of my head.
I have to have babs even thought I tested negative. I am seeing my llmd tomorrow because my insurance comp called today and told me that they are not paying for any more rocephin. So I just started the appeals process with the insurance company.
I'll let you know what the plan is tomorrow. I defintely want to go after the babs. From some of the reading of done, you should treat babs first or you will not get better.
My latest issue is itchingduring infusion. Anyone else have this? It's not a terrible itch, just a little itchy on my chest and back about half way through the IV. By the time I finish the bag, the itchiness is gone.
The docs put me on Allegra to (hopefully) control the itching. I so hope it works! I don't want to stop and start a new drug. I've had 3 weeks of Rocephin with only 5 weeks to go!
My numbers are still dropping closer to normal so the meds are definitely working. Just praying my body will continue to handle the meds!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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posted
I have alot of allergies so my advice on the itching is to make sure you have an EpiPen at hand. Only use if really needed (i.e. your throat beings to swell). It is good to have on hand if something happens. It should give you piece of mind. Hope it helps.
Posts: 35 | From baltimore, md & nj | Registered: Apr 2006
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I saw my llmd today and because my insurance is not paying for another month, he is suggesting that I have my line pulled.
His plan is to do bicillin shot twice a week. I am herxing something horrible on the art. I am taking 200ml twice a day. My llmd said if I am herxing already after one day, that I am going to herx like crazy.
He felt very confident about pulling the line because I suggested leaving it, and just flushing it for a month. He said no let's pull it.
I am going to post a thread called need advice, and see what happens.
I just got a letter this afternoon from my insurance company that they are denying the next month of Rocephin. I haven't had a chance to talk to my doctor yet.
I was just beginning to see the end of this! I'm so depressed...but I'm going to start fighting again tomorrow! Posts: 154 | From Medford, NJ | Registered: Jun 2006
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I am on the cheap Rocephin...can't remember what the generic is called. According to my doc, it still costs about $200 a day for the generic.
I haven't asked yet about the bicillin shots. I will do that next week. I kind of like the PICC line...it's fairly easy to do once I got past the squaemishness of having it in my arm. Not sure how I'd feel about getting shots every week!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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posted
19 days on rocephin and biaxin (yum that taste of aluminum foil in your mouth . . . )
I feel good. Started to get achey the last few days.
See my post on IV administration. This has been a harrowing journey -- having to figure it all out myself and basically do it all myself. I could not have done this three months ago.
The rocephin is getting in my daugther. Thats the good news. But it makes her crazy, with major herx's.
Someone on here said the generic rocephin was still $200 a day. Baloney. I am getting 90 days, 2 grams powder vial, for $1300.
Lets keep this thread going, or start another if this is too long.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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