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Re: Lyme Treatment
Jul 13, 2007
Hi bigstan. It is good you have been diagnosed, so you can get treated now!

Are you having a PICC line put in or a port-catheter? A PICC line usually goes in the arm. It is a very simple procedure. It does not take long at all and it is not very painful. You will feel a stick when the line is put in. After the line is placed, it is usually x-rayed to make sure it is in the correct place.

A home-health care nurse will likely show you how to infuse the meds yourself at home. She will monitor you until you are comfortable doing it on your own. It seems overwhemling at first, but it is very easy to do.

Many times, people have a home health care nurse come to their home or
workplace once a week to change the dressing on the IV and to take blood. I guess it depends on your insurance if a nurse comes to you or you go to the doctor's office. The most important thing about the IV site is that it should always be clean and dry. An infection in the line can be deadly. If there is ever any question about the way the site looks or feels, call your doctor or nurse immediately.

There is a great sleeve you can get to cover the PICC so you can shower without getting the site wet. It is called a Mid-Arm Protector and you can get it at Brown Medical.

Regarding the Western Blot, the CDC requires a large number of bands to show for it to be considered positive yet many people who have Lyme do not have this many bands show. Lyme doctors often focus on which bands show, some are specific for Lyme. Were you tested for all the co-infections also?

Be aware of the Jarisch-Herxheimer Reaction (herx). Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks.

Once you begin treatment, it is a good idea to document your symptoms daily. One easy way to do this is to list the three main symptoms you have each day and a numerical rating of their severity, from 1-10. Over time when you review this, you can see when your herxes occur and how you are responding to the meds.

Whenever you take any antibiotics, make sure you take high-quality acidophilus capsules. They replace the good bacteria in the body and help to prevent yeast overgrowth. The best ones to get are refrigerated. Most healthfood stores have them. Wait at least two hours before or after taking the antibiotics to take the acidophilus.

Good luck with your treatment!
Re: Lyme Treatment
Jul 14, 2007
Hey AGM. Thanks for the information. I looked up picc insertion and just don't like the fact that a tube travels up next to the heart. I know that this procedure is done many times for cancer patients. Its just the anxiety of it all. I'm trying to figure out the difference between IV and oral antibiotic treatment. Why my doctor chose the IV over oral tablets. Is this because I have long term Lyme disease? Do you have any reaction to the Rocephin? I know you said your going through the Jarisch-Herx. Do you know if most patients being treated for Lyme go through the Jarisch-Herx? How many ml a day are you on? How long does it take to infuse yourself? Can you adjust the drip like a regular IV to make it faster? Do you have a hard time sleeping with this thing on your arm? Do you have a home-health care nurse?

Hey Ticker, Thanks for the great information. I found the Mid-Arm Protector on the Brown website and ordered it. So that will help keep out any infection. Were you treated by a picc line when first diagnosed? What is better IV or orals?

Thank's Agm and Ticker for the response
Re: Lyme Treatment
Jul 14, 2007
[QUOTE=bigstan;3098842]Hey AGM. Thanks for the information. I looked up picc insertion and just don't like the fact that a tube travels up next to the heart. I know that this procedure is done many times for cancer patients. Its just the anxiety of it all. I'm trying to figure out the difference between IV and oral antibiotic treatment. Why my doctor chose the IV over oral tablets. Is this because I have long term Lyme disease? Do you have any reaction to the Rocephin? I know you said your going through the Jarisch-Herx. Do you know if most patients being treated for Lyme go through the Jarisch-Herx? How many ml a day are you on? How long does it take to infuse yourself? Can you adjust the drip like a regular IV to make it faster? Do you have a hard time sleeping with this thing on your arm? Do you have a home-health care nurse?

Hey Ticker, Thanks for the great information. I found the Mid-Arm Protector on the Brown website and ordered it. So that will help keep out any infection. Were you treated by a picc line when first diagnosed? What is better IV or orals?

Thank's Agm and Ticker for the response[/QUOTE]

Hey Stan -

I was diagnosed a year ago. My Primary Care Dr did the standard one month of antibiotics (100 mg twice a day). After a month he tested me again and the number (ELISA) was even higher. he said there was nothing more he could do for me. Ended up seeing a "Lyme Specialist" (LLMD) in December and having my blood tested by IGenex. Obviously positive.

I then went through 6 months of Doxycycline at 200 mg twice a day. Seemed to do nothing and I felt worse, but not herxing. Herxing generally means that after you have started a round of antibiotics treatment, if it works, you will start to kill off the spirochetes and they release their toxins when they die - thus you feel worse. It's not unusual to hear (or read) someone with Lyme say something like "I'm feeling lousy! Isn't it great?!" Sometimes it takes a while on antibiotics to feel herxing. I don't think I did very much on oral antibiotics. Obviously not enough as it is a year later and I am still getting my butt kicked by the little buggers. They could tell from my IGenex Western Blot that I have had it for quite some time.

It got so bad (my Lyme fog, etc.) that my Dr ordered an MRI which showed I had enlarged ventricles in my brain (I still have to see a neurologist to get their take on the MRI). When my Dr saw the results, he said "enough of this. It's been over a year. Lets get you on IV Rocephin" (insert cartwheels and confetti here). He (my PCP) is still not too Lyme-literate but he seems to be more so than he was last year! Hopefully this is the case and he will continue to work with me on this.

I am not exactly sure how much I am on. It says "1GM/100ML". I just finished week 3 and convinced my Dr to keep me on at least another month, hopefully longer. The whole process takes about 45 minutes including "flushing the lines" with Saline and Heparin. The actual infusion takes about 1/2 hr, 45 minutes if the Rocephin is just out of the fridge (they say take it out a few hours before but sometimes I forget). The IV is in a plastic bottle and inside it looks like a little rubber balloon (the whole thing is about the size of a baby bottle if not smaller). The rubber "balloon" inside forces the antibiotic solution through the IV tube and into your PICC line. Pretty ingenious if you ask me! I had a home health care nurse come to the house once and show me the ropes. She also gave it all to me in step by step instructions too. Nerve wracking at first but now I am an "old pro" at it :cool: They change the dressing once or twice a week too (I go to their office but they really should come to me - I just don't like waiting around all day and can do it on MY schedule). Some days I don't feel up to driving though so it can be a pain.

I know what you mean about having the tubes in and them being so close to your heart. I have a 16 month old and a 3 year old and I am constantly worried about one of them pulling on it. After the initial few days, you pretty much forget about it most of the time. Trust me, I was freaked out by it at first too!

Sleeping isn't too bad. You just can't sleep on that side if you are a "side sleeper" (and I am).

Well, btter get moving for now. Hope this helps Stan, feel free to ask any more questions!

Take care and God bless, Andy





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