posted
TERRIFIED is more like it! I haven't been on in a while, things have been pretty rough and I have been putting just about every spare moment to my health and finding a Dr. Well be careful what you wish for right. jk
I am getting a chest port in on Thursday and I am not to nervous about that part. It's the antibiotics that will be used I am freaking out about. Primaxin 2x a day
We have a week cruise booked on July 31st and my son got into an early college program for what would have been his junior yr of high school and we have a meeting for that on the June 16th.
Does anyone have any experience with this drug? I don't like what I've learned so far and now it's all I can do not to cancell the whole thing. I can't miss this meeting for my son. And the cruise, well I don't want to miss it but the money involved is something we really can't afford to lose.
If there was nothing going on I think I would still be really scared but this is just adding to the stress, how to ruin my whole families vacation if I am incapacitated?
Please anything offered is will be so greatly appreciated.
Posts: 86 | From Fort Lauderdale, Florida | Registered: Sep 2010
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Just my observation, & in all due respect.
So why don't you just postpone the IV till mid-August? It really is that simple. Stressing your self over this isn't helping your health.
You are the one in control & can make the decision to postpone.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
At this point I am not on any treatment for lyme, babesia, or bart and I am just about house bound. I have probably had lyme at least 10 yrs but only just found this out for sure in Jan. We have booked our cruise every year while still on the prior cruise so at that time I didn't know I would be getting even worse or I would have told my husband we should wait this time.
It took me this long to find LL Dr. and I still had to go 9 hrs to get to him. I am praying that by doing the IV treatment's for the 7 weeks prior I may have some improvement, even the slightest would be of benifit to me and help me on the cruise.
Posts: 86 | From Fort Lauderdale, Florida | Registered: Sep 2010
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I used IV Primaxin without any problems for at least eight months. The whole IV route sounds scary but with good care of your port and medical supervision it's not as scary as it seems. As far as putting the port in you will be sedated so you won't know what took place.
I did not have any problems.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Hi, I just started IV antibiotics as well. Today is day 9th. And like you I was petrified since I didn't know what to expect. But the first week was manageable... just more fatigue and weakness, nausea, and diarrhea, but it was gradual, so I was still doing ok.
Then the evening of day 7th I started to feel a lot of neck pain and the diarrhea was getting worse! Day 8th I woke up w/ the worse headache known to mankind!! I was sick like a dog all day long. By 5pm I thought ok if this doesn't improve I'm going to the ER (on a Friday night no less). So I decided to do a Castor oil pack (for 2 hours) and Epsom salt soak for another hour. By 9pm my headache was 80% gone!! I then doubled my pro-biotics before I went to bed and that took care of the diarrhea. Why I didn't think of that I don't know.
Today... I'm still a little off but nothing like yesterday. So I am thinking of doing another detox w/ Castor oil.
Anyway, it's normal to feel scared... for all you know you won't have any adverse reactions at all and steadily improve. At least you have 7 weeks before you leave... I think you will be able to see how your body react within a week.
Good luck. I too have to travel in August and I am scared about flying. And how will I drip my IV when I'm there, etc... sigh... Good luck!!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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posted
Thanks for the replies. This information helps.
I'm nervous about the procedure for the port but a WHOLE LOT more scared about the Primaxin and the possible side effects. They seem so much worse than the other IV antibiotics he could have put me on.
Abxnomore It seems like you are one of the few people I have seen who has said they didn't have any problems on Primaxin. I'm glad to hear about your good experience.
scorpiogirl are you on IVPrimaxin? If not what are you on? I am sorry you've had such a hard start to the IV treatment, I hope it keeps improving for you.
What is a castor oil pack? What probiotics are you on and how often are you taking them?
As for the IV infusion when you travel I understand your concern. I had a PICC for just 7 days because of a clot, but the meds were in a mediball which would have made it much easier for traveling. I don't think the Primaxin comes in a mediball, so I don't know how that is going to work out for my cruise if it turns out I am able to still go.
Thank you so much for the help it's really invaluable.
Posts: 86 | From Fort Lauderdale, Florida | Registered: Sep 2010
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posted
I was on Primaxin for 9 months. The nausea was incredibly bad, I would never have gone on a cruise while on it. I threw up daily without a boat, but I also get sea sick on huge ships.
Also, I'm not a doctor but I'm pretty sure taking it twice a day is not the correct dosage, you can even look it up in a PDR. Perhaps you misunderstood?
The biggest problem I had on it was the contaminated Heparin I took with it that poisoned me, but pretty sure they fixed that China problem.
I'm confused about how you are house bound and planning on going on a trip. If you are house bound and not taking any antibiotics right now, and you are just starting Primaxin, you are going to be pretty miserable in your cabin.
I'm not writing this to bum you out, I did travel with it but not right away, I infused on a plane, in hotel rooms, in a car (because you have to take it every 8 hours and you can take it in a mediball, but you have to take it out of the fridge an hour before, so I found it easier not to do use a mediball as that cut sleep down to 6 hours for me).
Good Luck
Posts: 243 | From chicago | Registered: Dec 2005
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Yes, I handled the Primaxin well but I think you should speak to your doctor in- depth about going on a cruise on IV.
Every one handles these medications differently but you seem to be very sick right now. When one is on IV and new to using it, I'd venture to say you would feel best in the comfort of your own home. If you hit rough seas you would be very uncomfortable and it happens.
Plus, I'm not sure being out at sea is wise. If there were a problem it would take time to get you help. I don't want to scare you as I did plenty of IV as have others but there is always the risk for problems when you are on them and even with orals. Infections, thou less so with a port, not tolerating the med while even after being on it for a while, C. diff. so many issues can arise.
Plus you will be on a ship with lots of other people and germs. I can think of countless times in the recent years where some strange virus has caused all the passengers on a ship to be sick and the ship was sent back. I'm not sure that would be a good situation for some one on IV.
I honestly don't think it is a good idea. I wonder, also, if the cruise ship would allow you to be on the ship under those circumstances? Have you checked with them? They may well feel that that is a situation that would put them in a situation they may not be prepared to handle should a problem arise.
Have you checked with the cruise line if there is any way you can cancel or even get part of your funds back given the circumstances. Having to be on IV medication is an extenuating circumstance.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
vrtualchik, I don't have experience with Primaxin but I do with going on a cruise when you're already ill... sorry to say, but you will still end up feeling like you wasted the money because you will not feel well enough to enjoy it.
If you still want to go because your whole family is going, then I would wait on the IV treatment if you can. Maybe beef up the supplements and see if that can get you a little less foggy at least for the trip.
On a side note, if you don't mind, I would be interested to know via pm what doc is treating you as I'm in FL too. Thanks and good luck!
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
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posted
I wanted to say thank you to you all for all the help.
It never even dawned on me about how much easier it would be to get some kind of infection if I was accessed at the time of the cruise.
I brought all this up to my Dr. and he wants to go ahead with the port and start the IV infusions so I can at least get 4-6 weeks worth before the cruise and then he said it's OK to stop for the week of the cruise. And restart as soon as I get back.
The port is completely implanted under my skin so once it's deaccessed I am free from chance of infection, but I can still cover it with something.
I know some people actually follow a protocol that takes them off their meds for a week at a time and I have read about a lot of people who stop their meds on their own for a week or so at a time to give themselves a break or because they were making them sick. So I would hope this isn't going to be a problem.
I guess I will find out soon enough : ).
gambler, we have cruised every year for the past 11 yrs and have always booked the next years cruise while still on the current years cruise. I didn't know last year that I was going to be this much worse. As far as being house bound, I said I was pretty much house bound. I'm not completely there yet and I pray I never will be.
This disease along with my other disability has taken way too much from my son and this cruise is something he looks forward to for an entire year. So even if I have to be miserable in a cabin I'll deal with it as long as I don't have to disappoint him yet again. I'm sure you can understand that.
Does anyone know what a Castor oil pack is?
Thanks again for the help!
Posts: 86 | From Fort Lauderdale, Florida | Registered: Sep 2010
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You could check in with him, take in some copies of labs, treatments, etc so he has them on record and is aware of your special needs.
Most are willing to work with you and make you comfortable.
I would definitely contact the line with your special needs and talk them over with them.I am sure they will do all they can do to help you.
Good luck with your treatment.
-------------------- Why don't they make Front Line for humans? Think about it! Posts: 78 | From North Eastern Missouri | Registered: Oct 2009
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posted
Thanks Nemo, I appreciate the support.
Posts: 86 | From Fort Lauderdale, Florida | Registered: Sep 2010
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Hi Vrtualchik,
I did Castor oil pack for 3 days straight and my nausea, diarrhea AND headache are gone!! In fact I felt so good this morning I made breakfast for the kids and packed everyone a lunch!! I have not done that in ages!!
I ordered the Organic Castor oil and flannel cloths from Amazon. I already have the heat pad for my leg pain.
1. Soak the flannel cloth with Castor oil. 2. Place the cloth across my belly focusing on the upper right abdominal (over the liver). 3. Place a plastic trash bag and cover the cloth. 4. Then I put my heating pad on top and sit there for 1-2 hours depending on bad I feel. Usually by the 60-90 minutes mark I get soo relaxed and fall asleep!
The oil is messy but very effective!! I usually put a towel underneath in case some of the oil leaks. If you google Castor Oil Packs there are tons of info and You tube videos on how to do it. It's working so well for me... nice not to have a headache today! Give it a try.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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posted
thank you scorpiogirl for getting back to me with that information. I know you weren't feeling well and I appreciate that you still took the time to reply with info. It is very helpful and will be used.
Posts: 86 | From Fort Lauderdale, Florida | Registered: Sep 2010
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