posted
Hi. I have been on IV antibiotics for approx. 2.5 years and due to money constraints, filing Chapter 7 - no more credit etc. I will not be able to continue with the IV. I feel I have gotten better on the IV and am fearful that if I make a change to orals or IM that I will end up right back at square one. Most of the fear comes from the fact that on orals nothing changed for me. I also know that was the beginning of my treatment. I know no one has a crystal ball or anything, but just need thoughts, ideas, comfort, etc. Thanks in advance!
Posts: 55 | From Mamaroneck, New york | Registered: Apr 2006
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posted
I will be watching this post. I just had my PIC line removed after being on IV Rocephin for 10 months.
I do feel it was helping. Not sure what is going to happen next.
I understand your concern.
Posts: 89 | From AZ | Registered: Mar 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
If your symptoms have not totally resolved while on the IV, then do ask your LLMD about continuing with antibiotics until he feels you have been treated sufficiently. (Hopefull that will be until you are symptom free)
Oral or IM antibiotics can be used.
Good luck...Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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I had a picc line for a very long time,It was 18 months , treated with IV 15 months, when I lost my ability to use my LLMD at that time ,
I also lost my job/co. paid insurance so eventually gave in and had it pulled.I finally had to realize I could no longer manage a LLMD w/ my finaces / insurance situation at the time.
I had been allergic to the first IV I had been put on back in 2002( Was really sick while on it- serum sickness- 5 weeks, before they finally believed I was having a reaction after a full body rash- very severe( til then they kept saying just slow it down) , but oddly it gave me significant improvement in some areas while making me sickest I have ever been at the same time,
when I took a month off abx.after the rash the difference was significant, sadly the rest of the 15 months did not go nearly as well but I did love Rocephrin- slow but sure for me.
Finally after the rassh I began IV Rocephin, in combo with IVClinda or IV zith one , plus orals.. One of the worst orals I was ever on was Cipro and had very severe reactions to it, later they kept puting on & off cipro in spite of the tendn & pain side effects.I still have many of the tendon & joint pain and am now disabled because of it in combo with the neuro lyme symptoms..
The last IV I was on was another Floraquinalone and I was terified based on the Cipro experience, I did continue to have issue and they told me this was my last IV ..This is only a small sample of all the abx. I was on but you get the idea.
I felt Rocephin IV did the most good without causing harm, and absolutly felt awful about being pulled off it - which all in alll I was on about 11 months in combos w/ both other IV's & orals of couse..
I was so in fear that when they said that Levaquin was the last IV choice for me or go off IV then I went on with the Levaquin knowing that I very well would likely be experiencing very similar joint / tendon issues which still had not been fixed.
I finally let my picc line go in apr. 2004, after stopping treatment feb. 2004, It really freaked me out obviously . Not like an addiction but more like a last hope feeling,
It felt to me like both my doctor and even my self had given up by letting it be removed. I have not had a true LLMD since. I do had crappy insurance now which I doubt would even cover the long term treartment.
I just have a local doc / and chiropractor take care of my symptom meds like seizure, sleep , anxiety, depression, and the occasional antibiotic. They are understanding and have known me years - they do not specifically treat me for lyme.. mainly for contstant severe pain - thanks to Cipro & Levaquin.
I completely can understand how it makes you feel to know u are going to have the line pulled, its always a mix of emotions and I believe the longer its in the harder it is to adapt to the idea of giving it up- it represents in some ways to those of us who had them so long a reality that in some small unconscience/or conscience way we have to admit the strongest abx. and even IV did not cure us/ or relieve enough of our symptoms for us to feel more normal..
There are drug companys, that offer a few months free meds to those that can't afford and have no insurance.. you may want to have your LLMD assist you with that possibility,, if not available to you then maybe hopefully a different approach will be all for the better in your case,
My Lyme symptoms are not really worse since stopping IV but my pain was through the roof starting 7 months way before ending IV treatment and is only managed by narcotics full time,I do plan to see a LLMD as soon as my SSDI comes through - retroactive I hope to 2004 at least.
I felt so bad about my finacial inability to treat that I have not even been on this board in two years except very recently, mainly because I felt like a failure.. and more treatment had temp. become out of reach for me..
I hope that you can manage to do orals at least, and maybe now you will have killed off enough for the oral combos to be more effective at thhis point than they were for you previously.Take care .
-------------------- Sandi ( badkitti30043) Posts: 664 | From Atlanta Ga. | Registered: Aug 2002
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posted
I will say that even though I wasn't on IV's as long as you were, I felt SO much better after my line was pulled and the meds were discontinued. I was on 2 gm IV Rocephin and 1500 mg Flagyl daily.
Both were discontinued when I developed peripheral neuropathy in my feet, most likely caused by the Flagyl, and am now being treated for by a neurologist. I don't know if it is permanent damage or not, but it's been 5 months, and it's only getting worse.
I guess my advice to you would be not to be scared, but to think how free you'll be without that dreaded line, and you may just feel even better. I hope so! As sick as I was while on the meds made me realize just what a bad day truly was.
Best of Luck, Jill
Posts: 203 | From Jacksonville, FLorida | Registered: Oct 2005
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posted
Thanks for all your input. Many good points were said. I guess the idea of taking something out that has gotten me a bit better is scary. I have relied on that thing for quite awhile. I just hope that the orals and IM shots will help me at this point. I am so angry at my insurance situation, the fact that I can't afford to do this anymore. I have been floating this all by myself for quite some time and it has cost me too much money to mention. I feel ashamed that at this point in my life things have come to this. I do believe though that my faith, hope and higher power has gotten me this far and I won't give up trying even if it is without the IV line. I would love to hear from others who also had the PICC line pulled and continued on with orals/or IM and continued to improve. Thanks again.
Posts: 55 | From Mamaroneck, New york | Registered: Apr 2006
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