posted
Hi all. I'm very new to all this. I haven't even gotten in to the doc yet. I have an apt. with Dr. Z in Michigan in mid July. I have a lot of old and new neuro symptoms, so if I do get diagnosed with lymes, I may (or may not) be treated with IV meds. My question is...how long do people usually need the IV antibiotics? I found online the typical time is 4-6 weeks, but I don't know if that is accurate. Does it vary depending on the person? Does anyone have any personal stories they can share so I have a better idea? Thanks! JS8
Posts: 33 | From Michigan | Registered: May 2012
| IP: Logged |
posted
I think it depends a lot on the patient and doctor. I got on IV Rocephin over a year ago thinking I would do a few months and be done. I kept having to quit due to side-effects and elevated liver enzymes. I only got 2 months in over a 6 month window.
I just recently did IV Vanco for two months which went better for me.
All this to say, it depends on how aggressive or cautious your LLMD is. I will probably be on IV's again before this is all said and done.
If and when you get put on IV's, they will monitor your labs frequently (mine was weekly). Going into it, you never know the amount of time you will be on it because your levels can become abnormal. It was a week by week thing for me.
Hope this helps and that you get some answers from your new doctor.
-------------------- You name it, I've got it. Full-time medical anomaly. Posts: 432 | From Southeast | Registered: Aug 2011
| IP: Logged |
posted
I've never had IV treatment, and hope not to.
That said, I don't think I've ever heard of someone who went from not being treated to starting immediately on IV abx. You'll almost certainly start with some orals, and go to IV if you don't progress.
Believe me, that's how you want it to be. The herx from IV treatment of an active infection would be horrible indeed. I'm reminded of some terminal ALS? CFS? patients in Cure Unknown who were diagnosed as possible lymies and treated with IV abx who died. Best guess was that they herxed to death...
That's a special case, and doesn't apply in your case, but the point is you want to knock it back as much as possible before you go IV.
Posts: 146 | From Maine | Registered: Aug 2011
| IP: Logged |
Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
I was on oral meds first, then when I needed more as in an IV, I did that. I kind of did a series of IV for a period of months and then oral for awhile.
I wasn't able to tolerate the IV straight through.
I think everyone is different in how their body works and how severe their lyme and co's are.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
| IP: Logged |
AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
My mom got 28 days of IV Rocephin - the IDSA "Non"Cure! She flew through it without a problem, only tending to nap in the afternoon during the fourth week.
Unfortunately, this did NOT get rid of her problem! Although she is quite lucid and still a good conversationalist, her short-term memory is shot. She now lives in a memory care ward,(euphemism for Alzheimers lockdown) to the tune of $7K+ per month - which she HATES.
She is completely isolated from all her family and friends, bored off her gourd by the low level of "activities", and can't understand how her legal documents were completely twisted to put the WRONG 2 of her children "in charge" of her life! (Forgery and theft are the answers... and we are battling in Court.)
The latest study by Stricker et al.(2011), found that between 25-52 weeks of IV ceftriaxone are needed to ameliorate neuro-lyme!!!
When study subjects were compliant in taking their recommended PROBIOTICS there were no adverse reactions. (2/3 of 152 subjects had PICC/port problems.)
If you do NOT get this thing under control before some illiterate doctor declares you a "legal incompetent," you will have absolutely NO SELF-DETERMINATION over the remainder of your life! My advice? Do NOT play games with this disease!
Posts: 1432 | From New Jersey | Registered: Jan 2012
| IP: Logged |
AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
The Stricker Study:
Long Term IV Antibiotics Obtains Significant Symptomatic Improvement For Neurologic Lyme
By comparison... the earlier FALLON study found that 10 weeks of IV abx cured the group with joint pain and fatigue, but was NOT Enough to control Neuro Lyme!
posted
IV antibiotics are turning everything around for me. I take a lot of probiotics and antioxidants and so far all blood work is stellar. My LLNP did work with the doctor mentioned in the study.
I have been on IV Rocephin for 3 months and free of pain on the good days. Even on a bad day, I don't hurt all day. Biggest issues still are GI, but slowly improving. Treating Babesia, Bartonella and Ehrilichia with Lyme.
I slept a lot the first 5 weeks of IV. Herxing was in cycles just like orals but no worse than orals. At least now I am on the right tract.
I had to do IV as I felt I was losing my mind. I didn't want to end up in a nursing home with someone feeding me jello.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
| IP: Logged |
posted
I did IV rocephin a yr ago for 2 months and all my blood work was fine the whole time. I improved a little.
Now I find out that my Gallbladder isn't functioning all that great but since it's not an emergency the Surgeon said I can wait another 3 months and look at it again.
I'm now back on IV, but doxy this time. I feel like it's working a lot better for me.
I mainly went back on it because brucella was still positive after 16 months on abx and my head started to feel like it was going to explode.
and insurance is paying atleast for a month, hopefully more.
Posts: 908 | From Albany | Registered: Nov 2008
| IP: Logged |
posted
I was on IV for 14 months, took probiotics and supplements and had no ill effects and it helped - I'm back to orals trying to improve more....
Posts: 128 | From MICHIGAN | Registered: May 2008
| IP: Logged |
posted
I started out with orals for 5 months and improved, but plateaued, and went on IV Rocephin in early April - it has made a HUGE difference so far for me! (that and the malerone)
But I'm not done yet - at least another month still. So I don't know how long yet, but I've had no liver or infection problems thus far. I am super careful to keep the picc dry and to take the probiotics.
I can do stairs again, actually have motivation again and overall am just doing a whole lot better so far. Its different for everybody, but I'm very happy with the progress at the moment!
-------------------- Wendy Posts: 253 | From Near Albany, NY | Registered: Jan 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic