I went to see a Lyme Specialist in Absecon, NJ, and he told me I can be cured! He told me my levels were quite high, and I definitely have Lyme, but I'm not at the point where I'm at the chronic stage. After I had a fever a few weekends ago, this sparked his concern.
His treatment for me, however, kinda scares me a bit: he wants me on antibiotics for 28 days via what I think is a PICC line. He told me it will be inserted in my upper arm and stay there until the treatment is complete. The treatment is to be done everyday at a hospital for 15-20 minutes, and then I'm free to do as I please. Following the 28 days, he said my Lyme would be cured.
So I guess my questions are...
-Cured?!? Is he serious??? [I hope so!] -Does the insertion of PICC line hurt? -Are there side effects? [He hasn't specified which antibiotic because my insurance is in the process of switching over, so I know this question may be difficult to answer.] -Has anyone else had a PICC line for such a short time?
Thanks!! Posts: 5 | From Southern New Jersey | Registered: Jun 2010
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Not sure if the doc you saw was a llmd (lyme literate MD). No llmd I've heard of says "28 days of I. V. & cured".
Did you ask your local support group about this MD? Support group list link is upper left side of this page.
PICC is put in hospital as out patiant surgery. Hurts (sore) for few days.
Usually when getting a PICC the person self infuses the antibiotic 2 times a day AT HOME.
It is not that easy where you're "free the rest of day". PICC must stay dry and of course clean. Bandage gets changed once a week.
Also there are many oral protocals. most of the time people start with oral abxs before a LLMD does I.V.
You don't even have info on which antibiotic he's ordering.
I'd be scared too, especially since he hasn't bothered to find out if you have any blood clotting disorders prior to putting a PICC in.
You need more info before agreeing to it.
Did the doctor give you copies of the tests? Did the doctor test for co-infections? (other tick diseases)
posted
I was on doxycylcine by mouth before I had a PICC line placed in my arm for IV Rocephin for 28 days. I then was followed up with Zithromax orally. Unfortunately, I am starting to experience signs of the return of lyme.
It is very important to read all you can about lyme. This website is very helpful. Also, be aware of the effects of antibiotics and the need for support for your body, such as vitamins, minerals and other supplements. Diet can also be very important to assisting your body's recovery.
One book that helped me was The Survivors Guide to Lyme Disease. Read everything you can and keep asking questions. There are so many knowledgeable people on this website, but know that each person is unique and has to find their own way.
All the best:)
Posts: 25 | From AL | Registered: Apr 2010
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I just got done with a 28 day picc line with Rocephin(done myself at home once a day thru home health nurse care). I've been sick for three years, but Lyme was only recently diagnosed. I had lots of ups and downs during the 28 days, but the treatment seemed to be helping. THe doctor offered to put me on 3 months of doxycycline follow-up, but since I was feeling fine and didn't want to miss any more of the summer with my kids(can't go in the sun w/Doxy), I asked her if we could wait. Might have been a mistake as I'm feeling funky again, but time will tell. The picc line insertion should be a breeze, as long as you have someone experienced working on you. I didn't, therefore looked like I had been abused after 5 attempts. They sent me to radiology, where the doc got in in painlessly in less than 10 min. Be aware that you may get yeasty, so may have to take Diflucan. I'm off the meds, but still dealing with the yeast. I would suggest going on it--28 days of inconvenience is better than dealing with chronic Lyme--if you can prevent that it's all worth it! Best of luck!
Posts: 7 | From Atlanta, GA | Registered: May 2010
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posted
If the Doctor said "cured in 28 days" he has to be an ID Doctor. No LLMD would commit to a cure in 28 days.
But, if this doctor will give you the PICC line and the meds, you will have time to find a good LLMD.
The PICC line is somewhat of a pain. It does hurt for the first day or two. Not a terrible stabbing pain, but more of an uncomfortable-unusual aggravation. It is scary because whatever you get in the PICC line will be dumped right into your heart, so keep it clean. But, a PICC line puts medicine right into your bloodstream so it is absorbed much better by the body. It also crosses the blood brain barrier which a lot of oral medications can not do.
Let us know what kind of doctor this is, is he/she ILADS, do they specialize in lyme, for how long you think you may have had lyme, then we can tell you more.
Good luck.
Posts: 893 | From Florida | Registered: Dec 2008
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posted
The doctor I saw is an Infectious Disease doctor, however, he is also Lyme-Literate.
I became very ill March of 2009 for a week: fever of 103 for four days, flu-like symptoms with no explanation, and completely down and out for an entire week. I saw my family doctor and she gave me nothing but antiobiotics for being "viral" and told me to call if my fever became worse. The fever only stopped for the day that I saw the doctor, and then returned full force. I have never been that sick in my life, and after the sickness, I continued life as normal.
This past January, however, I experienced severe swelling in my right knee to the point that I could not bend the joint to walk upstairs. My father believed it to be a torn menisucs, so we went to see an orthopedic doctor that he frequents. My inital consultation involved an X-ray, then an MRI, and when the results were inconclusive, the doctor decided to drain the fluid. Upon being drained, the fluid contained no blood, and the first words out of his mouth were "I'm going to have this tested for Lyme disease." He also ordered three blood tests: Lyme, Lupus and rheumatoid arthritis. Four days later, I received a call telling me I had Lyme disease (the fluid and blood tests confirmed), and I started six weeks of antibiotics (Doxycycline).
I returned to the orthopedic doctor after my six weeks, and he proceeded to tell me I "was cured because the knee is no longer swollen." Something felt funny about a diagnosis like that without a follow-up blood test, so I made an appointment with my family doctor (not the same doctor I originally saw when I became very sick...our practice, like many others, has more than one doctor). This doctor ordered more blood tests upon my request, and she told me I would have Lyme forever, and the knee pain I experience should and will be there for the rest of my life, and I should expect to have arthritis by the time I'm 50.
I tried contacting an infectious diesease specialist nearer to me, but the nurse told me there was no need to be seen. If I haven't been sick, the Lyme is probably gone if I completed the antibiotics.
I'm tired of being pushed aside, so after my most recent fever (mind you, only the first time I've been feverish since last year), I contacted a LLMD that would give me an appointment. Perhaps I got too excited when typing my original message, but he did not assume the Lyme to be cured after 28 days, but he believed it would significantly improve my condition. I have seen my blood tests, and they did run the Western Blot after my blood ran positive for Lyme. I don't remember off-hand how many were reactive/positiv, but I know it was far more than what it's supposed to be. ( I think I had 8/10...if that makes any sense.)
That's the strange part: what is my condition? Apart from occasional aching and being tired all the time, I feel fine. I don't understand this disease, though I'm sure no one really does.
The PICC line was a little shocking to hear, but he said because my body didn't react to the Doxycycline that a direct IV of antibiotics would be best.
I guess it's my naivety to believe this is the right treatment, but what else do I do? I've researched until my eyes almost fall out, and I still have no answers, mostly because I don't feel that my stage of the disease is anywhere near as severe as some of the people I read about here!!
Posts: 5 | From Southern New Jersey | Registered: Jun 2010
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Still contact local support group to find out about this doctor.
posted
Well, fatigue is my biggest problem. I have tried everything to get rid of it. It has slowly gotten worse over the 20 years. Now, I am on disability because I can't hold down a normal job, and it is mostly due to the fatigue.
Please do what you can now, since you have your diagnosis quicker than most of us, try your best to beat it.
If your Dr. is lyme literate, then give him a shot. Knowing what I do today, I would do anything early on to try to get rid of the lyme.
Good luck!!
Posts: 893 | From Florida | Registered: Dec 2008
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posted
You have had this for some time, not a new case. Short protocols might work for acute (new) cases, but probably not for the others.
So, since you have had some oral antibiotics already and still have the disease, and have had it for perhaps as long as a year, then it would be reasonable to consider a PICC line. However, you might ask if there is an alternative, maybe a longer course of orals instead.
Posts: 8430 | From Not available | Registered: Oct 2000
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