posted
I am confused about why so many people seem to need IV, Rocephin, and catheders. What do these things do? How are they effective? Who decides when a patient should or should not recieve one. I have been in treatment for lyme for 3 monthes. I believe that I was bit at the age of 12 and I am now 21. I have had to completely stop my life. I dropped out of college for the second time (for health reasons both times) and I have no energy to maintain a job or really any sort of social life. I have gained 35 pounds and I am still gaining. Although I just joined jenny craig so hopefully I will start to lose! I am going into my 5th round of physical therapy. I would love to go back to school in the spring but I go to school in LA and I live in northern california. My doctors thought I would be ready do school this semester but I definately am not! I also have two co-infections which i will start treatment for next week. Do u have any advice for me? I feel like the "prime" of my life is being wasted on this stupid disease. I know my health is number one but I need some encouragement and a better understanding of this all!
posted
Hi lindsay Im sorry to hear about this. My Husband is also young he is only 28 he has been fighting this for a few years now he has had the IV rocephin 2 times the first was a midline and the second was a picline.
He was put on the IV rocephine because he wasnt getting better on the oral meds he was given several times he was just getting worse!
I dont know your situation or If you started taking oral meds. Im assuming you did because everyone I know with lyme got started with the 3 weeks of oral abx.
I hope I helped you? If not Im sure you will get many more posts! I can just about gaurantee that you will!!!
Joyce
Posts: 34 | From MASS | Registered: Sep 2005
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lyme_suz
Unregistered
posted
Welcome Lindsay,
When you take oral antibiotics, you can only take the dosage that the tummy can handle.
The IV dosages are much higher. For example, my kids did rocephin and the dosage was 2grams per day. This compares to most orals that are measured in milligrams.
Also, putting the antibiotic directly into the bloodstream is more effective than orals because the stomach may not absorb all of it.
This nasty bug disseminates and goes to all the body systems; so aggressive treatment is needed.
I was really nervous about getting picc line installed; but it was a lot easier than I thought.
The great thing is that symptoms go away with treatment! Takes time, but you can get well.
posted
Some people need IV, others can apparently get by with only orals. There is no hard and fast rule. The decision to use IV is made by patient + doctor, plus advocates (like parents). Unfortunately, the ins co does not always agree with the decision.
You have had this for a long time and will probably need extended treatment. Got to adopt a patient patient attitude, and try to find some things you can do, to avoid going bonkers.
Wondering if there would be a possibility of taking a class at a local community college as a step toward going back fulltime at your LA college?
Posts: 8430 | From Not available | Registered: Oct 2000
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
IV treeatment may or may not give improvements. It is not the "end all, beat all" for every one. There are good points and down sides to everything.
Got to watch out for gallstones while on IV Rocephen. Have to make sure you do not have a clotting disorder before doing a pic line or any thing that may stay in for a few weeks.
I am very thankful my LLMD tested me for clotting disorder. Getting a blood clot is dangerous.
I did find out I have a genetic blood clotting disorder, and while on IV had to do anti-coagulant shots. Since then, any of my family members going for blood work, gets the genetic clotting test.
By the way, the IV really didn't do that much for me. Had much more improvements on oral Ketek & Tinidasole. I was diagnosed MS for 15 years before finding out caused by lyme.
Everyone is different.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Bicillian IM shots is what I'll do when the time comes. No IV for me. Too much relapse and insurance headaches.
Bicillian is way cheaper (less of a problem w/ insurance) and I have never read about ANYONE having a relapse on it or after it.
Really don't understand why every one is so bent on getting IV.
Just my really good opinion. I'm not a MD.
Feel Better Soon!
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
People seem to respond to different classes of drugs. And drugs have different methods of action,which is why so many of us are on combinations.
I didn't have a particularly good response to other cillin drugs, so kinda doubt that bicillin alone will be the ticket for me, even if I could stand getting stuck that many times. The macrolides hit my symptoms better. This is another consideration in choosing a drug.
Posts: 8430 | From Not available | Registered: Oct 2000
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Lindsay,
As people said, it depends. It has to do with your symptoms, the way you respond to treatment, the co-infections, the doctor, etc. I was never on IV, and you know I had Lyme longer than you before it was diagnosed.
The prime of your life isn't being wasted. I'm 30 now and honestly think I'm in my prime. I'm much more comfortable with who I am, I'm more confident, and I'm getting healthy. I had a lot of fun when I was around 20, but I was always trying to be something. Now I'm who I am and darn happy with it.
As far as weight, it can go up or down with Lyme treatment. Again, we all react differently. But, if you are on abx, you will likely want to go on a yeast prevention diet. That's no sugar, very little carbohydrates. Many people lose weight on that diet because it's so low carb.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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I'm much more comfortable with who I am, I'm more confident, and I'm getting healthy. I had a lot of fun when I was around 20, but I was always trying to be something. Now I'm who I am and darn happy with it.
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