posted
Apparently I've relapsed! Not too happy about it but at least this time there is an explanation as to why I feel like crap! My muscle enzymes have begun climbing and I've only been off the abx for 5 weeks!
This time my symptoms are basically the same but with an overall achey (like I'm coming down with the flu) feeling and really tired.
I had been feeling great so I know there's hope...just need to stay on the abx longer, I guess!
Kathy, how are you doing with the shots?
Kim & Jeff, how are you doing with the IV?
Still hanging in there, Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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posted
Hi Karen, Hope you are back on the upswing after relapse...
I have been taken off rocephin till monday due to gallstones. Don't know what my doc will do...maybe change the abx? Will let you know. In th mean time I had a realy bad flare this month (month 3) and it is hanging on for two weeks. Pain in my pelvic area, bladder, under right rib (gallstones) and feeling like I have the flu.
Wish it was better for the holiday!
Blessings to all my friends here--love you all! Kim
-------------------- We are spiritual beings on a human journey...
I am staying on the rocephin until 6 months and maybe more. I am starting to be less sick in the morning and have had a couple of days where I was relatively pain free.
Go figure.
I am afraid of relapse too.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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Jeff - glad to hear you're feeling better in the morning. That helps set the pace for the rest of the day.
David - They have been watching my Aldolase and Creatine Kinase closely. Normal Aldolase is under 8...at my worse it was 59, then down to 9 now up to 28. For the CK, normal is under 165, was as high as 2700, down to 240 (felt really great) and now up to 640 as of 2 weeks ago.
Kim - I can relate with not feeling good especially for a holiday. I feel terrible but dinner was already planned at my house. Fortunately everyone is bringing something and my bil is taking care of the turkey for me. I know my mil will clean up the entire kitchen so I can sit back and relax or sleep.
I am thankful that at least this time we know what's making me feel so bad. I'm thankful that my children have been so helpful - even made dinner for me last night! (They are 9 and 11) I'm thankful for my husband's patience with me. And I'm thankful that God allowed someone to create all these antibiotics to fight off disease!!
Hoping all of you will enjoy your Thanksgiving! Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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I will get a PICC line placed on Wednesday, 11/29, and I will be infused at my LLMD's office daily (M-F) for 2 weeks and do it myself at home thereafter.
This whole thing is making me nervous and anxious, mainly because I really don't know what to expect.
Do you get infused at your doctor's office, or at least at the beginning?
If so, do (did) you have someone drive you there? Is it safe to drive right after the infusion?
I know everyone responds differently to medications, but how did you feel at the very first infusion?
Any word of wisdom to share from your experience?
Thanks, in advance!
shizuko
Posts: 110 | From Northern Virginia | Registered: Nov 2005
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I am on IV Rocephin and got my PICC line inserted about 9 weeks ago. The PICC insertion is a breeze! I thought it would take 30 minutes, but it only took less than 10 minutes. It wasn't painful at all. THen I went to a local hospital to get a chest x-ray just to make sure everything was in its proper place. I did my first infusion at the office, where I was showed how to do it myself...again very easy. I didn't have any reaction to the meds, and I was able to go home by myself (although I took a train, not a car, so I didn't have to drive). You may be able to drive yourself, although they may want you to have somebody else drive you. However, don't be surprised if you feel no differently from how you walked in. Don't worry...you'll be fine!!
Posts: 33 | From New York | Registered: Aug 2006
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Shizuko, I was very anxious too before the PICC line and before the nurse showed me how to do everything.
I think it is good that you are getting the treatments at the doctor's office. However, you will learn in the first few days how to do it. Get them to show you and your spouse/friend/parent how to monitor and change the dressing.
I found one of the most important things was locking the PICC line into a STAT. It keeps it from not moving, and my first one slowly pulled out and had to be replaced. This one is not, because I have the STAT.
I disagree with others -- everyone will have a different reaction. I am still nauseous and sick for two hours after infusion and would not consider driving. My daughter slept for hours during her first months of infusion. So I hope you don't have a reaction . . . but dont underestimate the herx potential.
Many of here said, don't worry, doing the infusions are a breeze. And it is, once you get to know how to do them.
good luck
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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Well, I feel a little better about the PICC line placement part, although my concern is that my veins are tiny and tend to go "side way" and even "change directions."
I made an appointment with a particular technician at a hospital whom my dear friend, char highly recommended.
Apparently, he is very good at what he does and therefore gets requested often to do the picc line, so I hope he will figure out what to do with my veins!
I will be infused at my LLMD's office for the first 2 weeks, during which I will be taught how to infuse myself at home.
Each infusion takes about 2 hours as they try to do it slowly, especially on the very first day, to see how I am doing.
My guess is I will be nauseous from the infusion too, because even moderate dose of oral ABX makes me nauseous, particularly in the morning.
The nurses told me that I should be fine driving after the infusion, saying it's just an antibiotic.
First, I was excited to hear that I could drive myself to the infusion, then I started wondering if they really understood Lyme and herxing, etc.
So I asked the nurses to ask my doctor about driving but have not heard back.
Well, maybe it is okay for me to drive. I guess I will know more after the forst infusion!
shizuko
Posts: 110 | From Northern Virginia | Registered: Nov 2005
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I'm happy to alleviate your fears. If we Lymies aren't there for each other, who IS going to be there? We need to stick together!
Basically, I lay down on a table, stuck out my left arm (after they clean the entry site). I was talking to the nurse who inserted it. I felt a prick (just like when you give blood -- that's the ONLY part that I felt). I talked to him for about 10 minutes, wondering "When is he going to do the friggin' procedure already." Unknown to me, he WAS doing it. I didn't feel it going up my vein or anything. I only felt the prick of the needle/catheter. Then I was pretty much done. He puts some tape/gauze, antibacterial goo, and a "sock" on to keep everything in place. Then I got the chest x-ray and then came back to the office to be shown how to do the antibiotics with the saline and heparin flushes.
By the way, I was cold so I had small veins at the time too, but he still got it in there without a problem. Don't be alarmed if it takes more than one attempt, however. It's not uncommon, but it's not a big deal.
Also, I didn't feel much improvement until just recently, so hang in there. I hope your LLMDs don't give up on your IV abx (mine is Rocephin) if you don't respond within a few months like me.
Oh, one final thing. Don't freak out if your hand/arm gets a little cold after the procedure for a few hours. It's just the circulation being altered in the arm after the PICC is inserted. This is normal and temporary!
Hope this helps. Good luck, although you probably won't need it...it's probably the easiest thing you will do in difficult road to recovery!! Posts: 33 | From New York | Registered: Aug 2006
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P.S. Also ask if you can get a self-collapsing ball of Rocephin so that all you do is connect it to your PICC tube and it automatically infuses. It takes about 40 minutes (2 grams), and you don't have to do a thing! Easy!
Posts: 33 | From New York | Registered: Aug 2006
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posted
My PICC line was a breeze. I had it done in the hospital in a special procedures area. It took seconds to put the line in. They spend a few minutes to clean and sterilize the area. After insertion they take a chest x-ray to make sure it is in place.
I will be honest, I do not think I could have driven home, but I don't drive too much these days lately.
I am THE biggest chicken and found the whole procedure painfree. I had very little discomfort the first 2 nights when trying to sleep, but I was staying awake trying not to lay on my new buddy. My PICC was inserted in my right arm. I don't know the reason but my doc will not insert pics in the left arm.
I am the poster child for NOT wanting to do the PICC line, and I am telling you, there is nothing to it.
I must say I am amazed at the number of people who work while having this line in. KUDOS to you.
Wishing Healing and Wellness to All !
Posts: 116 | From state of lyme | Registered: Oct 2006
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I had posted a week or two ago for some advice about PICC line placement and IV Rocephin. I got my PICC placed last tuesday and have had an infusion everyday since. A home health nurse came out the day after my insertion and taught me how to flush my line and do my infusions on my own. All is A ok! Also the procedure went very well and is nothing to be worried about.
I do have a question though. Does anyone ever experience stuffiness in your head, similar to a sinus infection while/after your infusion?
I have been experiencing this on the right side of my head, which is the same side my line is placed. I also have a wierd taste in my mouth when I do my saline flushes and start my Rocephin. I may just be over-exagerating, but I just worry about my line moving.
When they initally put my line in, it went into the wrong branch and I felt a swooshing in my ear when they flushed it, so they reinserted it and it was fine, confirmed by the CXR.
I was told by the PICC nurse that I could resume normal activites, but was told by the infusion nurse not to lift over a gallon of milk, to ensure the line doesn't move. I am just worried it did somehow.
Any advice is GREATLY appreciated!! To those of you contimplating a PICC, go for it, it's painless!! The most annoying part is covering it for showering each day.
-Amy
Posts: 73 | From just outside of Lansing, MI | Registered: Jun 2006
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I cannot thank all of you enough for easing my anxiety over this, and as you all said IT WAS A BREEZE!
It was so quick that I couldn't believe I was done, and even the anethsetic injections (2 of them) didn't hurt at all.
The nurse (I guess he is a nurse) found a suitable vein on my left arm (I am right-handed)without any problem despite the concern I had over my tiny and side way veins!
I will go into my LLMD's office tomorrow for the first infusion (Rocephin.)
My husband will drive me there and also stay there to see how it's done too as I will be infusing myself after two weeks.
My LLMD said that I should be able to drive as long as I don't have a bad flare but that I should have someone drive me for the first day or two.
Hopefully I won't faint as I did with oral ABX early on. I have been taking anti-seizure medication, so there is hope!
Amy, I can't tell you anything about sinus symptoms - because I haven't taken Rocephin yet.
Like you, after the PICC insertion, I was told not to lift anything heavy.
I was also told to be very careful when lifting the arm above your head, particularly doing repetitive up and down movement as it could dislodge the line inside the body. Other words, try to limit this kind of movement.
Also, putting a cut-out sock on your arm at night will prevent you from touching and/or pulling the PICC by accident while asleep, another nurse told me.
Well, I will see how I do tomorrow!
Thanks everyone for all your support!
shizuko
Posts: 110 | From Northern Virginia | Registered: Nov 2005
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Glad that all went well! All I ever felt as a side effect of the Rocephin was tired...so plan for a nap after your infusion tomorrow!
I'm now on 3 oral abx with the possibility of going back on the IV. We don't know if what I have is Lyme Disease or some other bizarre infection. Two of my docs are now trying to get me in to the top Infectious Disease doc in my area to see if there is some other organism or parasite or other unwanted bacteria causing my problems.
At least I had 1 month free of doctor's appts! Looks like December is going to be full of them!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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I just want to let you know that I had a PICC line inserted yesterday as well. It all went smoothly though I was a nervous wreck! I had my first two rocephin doses done by my husband - my doc walked us through it- and have not had any problems. I will check in occasionally to see how you're all doing and update on myself. If anyone has questions for me just let me know. Good luck all....scottie
Posts: 90 | From massachusetts | Registered: Aug 2006
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Hi everyone. My husband has just started IV therapy for his Lyme after 18 months of Oral. Just got my first EOB from insurance. Almost passed out. 1st bill from company is $4600.00 with insurance paying on $530.00. The balance is mine. UGGGGGH
Is everyone running into this high of cost???? This is for injectables and supplies only. 1 shipment.... Hopefully it is the bill for the month. I will have to call insurance and see what to do. Otherwise, I guess set up a payment plan for eternity.
Just curious.
Posts: 7 | From Duplessis, LA | Registered: Aug 2006
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Why is your insurance comp being so stingy...if hubby has a postive test and still sick after so many months of orals, why aren't they paying!!
Would recommend you repost and title PAYING FOR ROCEPHIN...or somehting like that,... I know people on the board who figured out how to get their costs way down by buying generic and mixing themselves...
Good luck Kim
-------------------- We are spiritual beings on a human journey...
I sent you a PM with the list of supplies we purchase every month for our daughter's infusion of Rocephin.
I thought that I'd also pass along some info on the cost variances that we've found over the past 8 months.
When our daughter (Nicole) had her PICC line inserted (June 2006) we purchased the supplies from a company that supplied everything pre-mixed, pre-filled and ready to infuse.
In addition an RN would come to our house and do the dressing changes once a week. The monthly bill was around $3000 ($100 a day) and $290 a week for the RN's time - total of ~ $4600.
Nicole's health insurance covered the first month and then denied further coverage. We paid out-of-pocket for the next 3 months.
She was taken off the Rocephin for about 3 weeks and became really sick. Her LLMD put her back on the Rocephin.
This was in November 2006. The LLMD this time recommended a different pharmaceutical company. We made arrangements to purchase the Rocephin in dry powder form and the other needed supplies in vials.
We have to mix (reconstitute) the Rocephin with sterile water, load all of the syringes with the needed saline and heparin.
The cost for the monthly supplies, including dressing changes, IV tubing, etc. from this supplier costs $1300 a month.
So we've gone from ~ $4600 a month down to $1300 a month.
Hope this helps some who are wondering about costs.
Let me say one more thing - IT HAS BEEN WORTH EVER PENNY.
My daughter just walked through the front door after being out of the house for over 3 hours. She went to Barnes & Noble, drank tea with her friends, bought a couple of books and is now making herself a PB&J sandwich.
In June of 2006 we had to purchase a hospital bed and a wheelchair for her. She was confined to one or the other 24 hours a day.
I've had to get up at all times of the night to hold her head while she became violently sick.
I've had to take her to the ER more than 30 times over the past 3 years alone.
She's not well yet, but Rocephin is working !!!
Keep the faith !!!
Posts: 681 | From California | Registered: Oct 2005
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Figured I'd bump up this thread since I just became one of the buddies starting a week ago!
I have this rocephin ball which sort of self-deflates over about 30-45 minues. Showering is still a pain in the neck but I am starting to get used to it.
Hoping my symptoms start to resolve at some point.
-David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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