posted
It looks like my 25 year old needs to get IV antibiotics. We are scared about the IV line and the cons of this treatment. Any experience out there?
Posts: 10 | From Miami, Florida | Registered: Apr 2010
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Mine was fine for 4 months. I overdid it with the arm it was in and developed a blood clot outside the line.
I do have a genetic clotting problem called Factor V Lieden. Knew about that before I did the PICC. I did Lovenox shot while doing IV treatments.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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I had a PICC line for 3 1/2 months and it was a breeze. Never had any problems or discomfort. I learned very quickly how to administer the IVs by myself. I only needed a nurse once a week for my dressing change.
IV antibiotics are the only meds that I've seen any improvement. I've gone dramatically downhill after stopping the IVs. I only stopped because my insurance stopped paying. I would encourage your daughter to go ahead with IV antibiotics and do them as long as possible.
-------------------- Misdiagnosed with CFS for 7 yrs. Diagnosed by LLMD in 2009. Aggressive treatment for 3 years with minimum improvement. Posts: 120 | From FL | Registered: Jun 2009
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Imagine yourself outside on a bright sunny day. You are sitting on your back deck enjoying the outdoors, feeling content and thankful that you have made it this far. You finally received a Lyme disease diagnosis after years of misdiagnosis and a wild goose chase, and the whole confusing and maddening influx of clueless doctors that comes with it. You just got your new PICC line, and you are all set to finally start your IV antibiotics for Lyme disease. You are pretty nervous and overwhelmed at the entire thing, but you are glad to finally be getting the treatment you have needed for months or years.
You do your first 6 weeks of IV antibiotics and everything goes smoothly. You herx pretty hard in the beginning, and that is a normal and expected reaction. All your symptoms get worse, and you even notice some new ones popping up that you never had before. You may feel like you are dying at times because your body is overwhelmed with toxins and killing bacteria.
You keep going with your treatment, taking special care to keep your IV line clean and dry. You hope you won't need it for too much longer, but you are still so sick, you know you will need it for a while longer.
Then one morning you wake up, and flush your IV line with saline, and prepare your IV antibiotic for administration. You've done this hundreds of times by now, so it has become a normal part of your daily routine. Unfortunately, this IV treatment will be different, unlike any other. As you flush the line with saline, you notice your hand starts hurting, and you suddenly feel sick to your stomach. Almost instantaneously, you begin to feel sick all over your body, you start to sweat and you feel funny in the head. A minute goes by, you start to vomit, and you feel like something is taking over your entire body. You grab a thermometer out of your drawer, and much to your alarm, it reads 103.9 degrees! In a panic, you check it again. This time it's measuring off the end limit at 104.7 degrees and climbing.
You start to throw up all over yourself and your heart is racing so fast you cannot catch your breath. Your entire body is shaking violently and you know something terrible is happening. In a panic, you dial 911, and then pass out. The ambulance comes to save you, and they find you near death with a blood pressure of 240/110 and a heart rate of 165. They treat you for shock, and see the IV line sticking out of your arm. You don't know any of this is happening because you are unconscious.
What's happening to you is called septic shock. It's also known as bacteremia, or sepsis. Bacteremias are life-threatening infections of the bloodstream. When bacteria enter a central line (PICC line, chest port, Hickman, Groshong, etc.) they can reproduce in the line and can cause a fatal blood infection. When this happens, you are referred to as a "septic" patient. Immediate treatment is necessary to save your life. If you become "septic," you will likely be so sick and out of it that you are considered to be in "septic shock". Sepsis can develop as a result of your body's immune system defenses, or from the toxic substances made by the infecting agent (such as a bacteria, virus, or fungus). Many different microbes can cause sepsis. Although bacteria are most commonly the cause, viruses and fungi can also cause sepsis.
To all of you who have IV lines, your doctor may or may not have warned you about the dangers of having a central line. Oftentimes patients are coached on how to administer their IV antibiotics, how to flush the line with saline solution and heparin to prevent clotting of the blood in the line. Most PICC line users know how to change the dressing, how to shower with the PICC line, and how to be gentle with it. What many patients do not know, is what to do if that line ever gets infected. Most doctors do not routinely explain what to do if you become septic because it would likely scare the patient quite badly. Most vascular surgeons, (the guys who operate on you to insert the central line) also do not explain what to do if it gets infected, when to remove the line, or what to do if it ever leaks, etc.
As a Lyme disease patient, and a two-time septic shock survivor, I am here to share my experience with the dangers of IV lines. This is only meant to help educate you, and this is not the ranting of some anti-intravenous Lyme victim. Trust me, I am all for aggressive antibiotic therapy and IV, so please try not to get the wrong impression. I am not a doctor, so please do not take any of the following as medical advice.
Please follow up with your personal physician and ask your own questions. Please consider these words to be a warning based on a patient's experience. I'm putting this out there to hopefully help save some lives, and arm you with the information about what to do if an emergency ever strikes.
In a nutshell, if you are on IV, or going to be on IV, know the risks in advance. Be prepared. Have your doctor's emergency contact information plugged into your cell phones and on a notepad next to your home phone. Give your family and caretakers your doctors' phone number, and pager. Inquire in advance if your doctor has a pager, cell phone or answering service, and ask him/her what you should do if you ever have an IV line emergency. Another tip I have to offer is to always do your IV treatments during your doctor's office hours so you can quickly call them if something comes up. It's also a good idea to make sure somebody is home with you, keeping an eye on you while you administer your treatment. At the very least, make sure you have a phone near you when doing your IV. Always go for your routine blood work while you are on IV and be extra careful during all of your social activities. Many of you travel long distances to see your LLMD, sometimes to other states and far from the comfort of your home. Remember, this is the very reason (one of them at least) why your LLMD requires you to have a local physician following your care, so you can call him/her in a situation like this.
Always make sure you keep your IV line clean. Learn how to change your own dressing, and always use sterile technique, which includes wearing a mask every time. Keep your dressing dry, and do not traumatize or abuse the line in any way by overexerting yourself.
If you ever notice a funny feeling during or after an IV infusion, call your doctor. If you ever feel pain all over your body, in the PICC line itself, or on your central line site, then stop the treatment, and call your doctor. If you ever encounter resistance while trying to flush your line, stop! There may be a blood clot in the line, which needs emergency medical treatment. Remember that central lines go directly into your heart, so it is not a wise idea to force the IV into your body. Stop, and think!
If you ever notice swelling, discoloration, discharge of pus, bleeding, or oozing from your IV line site, then call your doctor and go to the nearest Emergency room. If you ever have any of the above problems, plus a sudden fever, shaking chills, sudden pain all over your body, vomiting, etc, then dial 911. You don't have time to drive to the emergency room, so call the ambulance!
Your medical and hospital staff should probably pull out your central line for your own safety. If things are uncertain, and the medical professionals are not sure whether or not you have sepsis, then they should take blood cultures out of the IV line and find out if there are any harmful organisms in your IV line. Unfortunately, blood cultures take 24-48 hours to grow, so it may be wise for the ER to pull out your IV line, culture the tip of it, and start you on prophylactic sepsis treatment regardless. From what I learned as a patient, blood cultures should always be drawn regardless of whether the line is pulled or not in order to determine which organism is involved, and the resulting appropriate treatment.
When I had sepsis the first time, I had blood cultures drawn both out of the IV line, and a separate set out of my other arm for comparison. Both of the cultures showed a gram negative, very nasty bacteria that would have killed me had I waited and not gotten to the emergency room by ambulance. By the time I reached the ER, I was unconscious and my temperature was 106.7 degrees. Somehow in my delirium I managed to spit out my LLMD's phone number, and the EMT's patched him through.
The line was pulled, the tip of the line cultured, and I was placed on IV Vancomycin to kill the deadly bacteria. The second time, the same thing happened (cause unknown) and IV Cipro� was used. Let's just say that having sepsis was the scariest thing to ever happen to me, and it was absolutely astounding how fast it came on. Be extra careful with your IV lines; know the risks and the dangers and what to do! Each person is different, as is each case. The first time, I had extremely high fever and blood pressure. The second time, on a new Hickman catheter, I had very low blood pressure and fainted, but did again have a high fever and was rushed to the ER by ambulance both times.
Remember that just as there is a risk of not treating Lyme disease or Cancer, there is equal if not greater risk of using IV therapy.
Severe sepsis is a very serious, life-threatening condition. Simply put, it kills people. If you are a victim of severe sepsis, your organs will likely not receive enough oxygen and they may fail or shut down. When organs shut down, the body cannot function and death is possible. The most important intervention is rapid diagnosis and then prompt and appropriate treatment. For Lyme patients, if you ever have symptoms of sepsis, please do not assume that they are the same thing as a herx reaction. It may seem to you like your body is hurting all over so suddenly that it "must be a herx", and you might be tempted to push through the pain. Bad idea!
According to the Society of Critical Care Medicine, sepsis actually kills more Americans than breast cancer, colorectal cancer, pancreatic cancer and prostate cancer combined. In the U.S., it is estimated to be around 750,000 cases a year. And, mortality is about a third. So, some 250,000-300,000 die every year of sepsis. About half to two-thirds of patients in the ICU die because of severe sepsis.
Now that I have probably scared you all half to death, try to relax. Sepsis is a known risk for anybody with a central IV line, but is the exception, rather than the rule. Over the past 10 years I have emailed and spoken to hundreds of Lyme disease patients who have done IV antibiotics, and had absolutely no problems. I have also talked to a few who have had problems with their lines, such as leaks, bleeding, pain, bruising or blood clots. There have been 4 people that I know of who have gotten severe sepsis.
One of the victims was Susan, who is now a good friend of mine. At t he time, Susan was just a visitor trying to learn about Lyme disease on the internet. She later told me that if I had not publicly explained my sepsis story on a public internet Lyme disease forum, that she would have had no idea what to do when it happened to her. Sue had read one of my posts, and when she got sepsis herself from an infected Hickman catheter, she recognized the symptoms, knew what to do, and went by ambulance to the ER. She survived, and that is why I decided to write this article as a warning for all of you.
If I had to do my Lyme disease treatment all over again, I would still use IV antibiotics without hesitation. Long-term IV antibiotics saved me from a life of disability and pain and brought me back to the land of happiness and healthy, happy living.
In closing, remember this: your health is important, and most of you value it more than anything else in your life. I will leave you with one of my favorite quotes: "Don't be afraid to encounter risks. It is by taking these chances that we learn to be brave." Be brave, but do it with wisdom.
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Thanks to all who have responded. And thanks to WildCondor for all the insight on the cons of an IV line - we are still going to do that I think and am glad to have read all of your advice which we will definitely follow.
Posts: 10 | From Miami, Florida | Registered: Apr 2010
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posted
Thanks to all who have responded. And thanks to WildCondor for all the insight on the cons of an IV line - we are still going to do that I think and am glad to have read all of your advice which we will definitely follow.
Posts: 10 | From Miami, Florida | Registered: Apr 2010
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WildCondor
Unregistered
posted
No problem, glad I could help. It REALLY bothers me that so many doctors are not explaining the risks of IV lines to patients, especially what to do if a problem arises.
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I do IV Rocephin everyday by my self in superficial veins of my foots and arms i think is more safe.After I'm done with IV just pull it out everyday like that.
Posts: 482 | From Nebraska | Registered: Feb 2010
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posted
Sorry Maradona, I don't think my daughter could do that. Am glad it is working out for you though.
Posts: 10 | From Miami, Florida | Registered: Apr 2010
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posted
Thanks for posting that. While I was warned about the possibility of sepsis, and other risks when I got my PICC placed, they weren't really all that specific.
Personally, I had minimal trouble with mine. The first one sprung a leak after two weeks, and I had to have it replaced. Had no problems for the next three months.
It's annoying, but worth it for how much I improved on it. I'd actually been off of all treatment for a year, no symptoms at all.
I thought it was gone, but then I got sick again last month. I went right back on IV.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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