Posts: 15 | From New Lenox, Illinois, USA | Registered: Apr 2004
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Rita
Unregistered
posted
I ran into a man, just back to work, who started to improve at about 14 months and, at 18 months, said he was back to 80% of his former self.
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3greatkids
Frequent Contributor (1K+ posts)
Member # 3838
posted
I did 12 months IV and now doing orals.Not there yet but coming along.I think some of my worst herxing was around 8 months.Hang in there, this is just different for everyone but you will be feeling better. Posts: 1076 | Registered: Apr 2003
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Posts: 15 | From New Lenox, Illinois, USA | Registered: Apr 2004
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liz28
Unregistered
posted
Could you go into a little more detail about your symptoms, and any improvement you might have seen? Are you on any other abx, supplements or herbs?
IV Rocephin Doxy Mepron B-12 IM Mag IM suplements up the wazoo
Posts: 15 | From New Lenox, Illinois, USA | Registered: Apr 2004
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Good evening South Side,
I just want you to know that this takes time...and much patience!
I am in my 11th month of IV therapy. Today, I worked a 10 hour day in the sun at about 100 degrees, doing manual labor (landscaping)!
Just a few short months ago, I would NOT have thought this ever possible again! (At least NOT this soon after a complete meltdown)...
Sooo...please, hang in there...there is ALWAYS hope!
Have you been on Rocephin this entire IV time? The reason I ask, is that I believe (my own personal opinion, and that of my LLMD's)...that rocephin will only take you so far...when you begin to relapse on it...or plateau...it is time for a change, just like any other abx.
I know some who have been on rocephin for years...and are still seeing improvement. So, it just depends on your own particular response.
Anyway...just wanted to give you a glimmer of hope...
My very best, Melanie
------------------ C O L O R A D O * S U P P O R T * S Y S T E M [email protected]
rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001
posted
Sorry to say what might be doom and gloom to you.
I is well documented that Rocephin, alone, will send the spirochette bacteria into a cyst form where they stay protected until you introduce the correct antibiotic to break open the cyst and another to kill the spirochette after the crust of the cyst has been broken. That was my simple explaination of what happens.
If you want documentation, I can provide that for you...you just have to ask me.
You have had this for a very long time??? and, with that said, you have to realize that this is not something you can get rid of in a short period of time.
Hang in there, and get to a real Lyme Literate Medical Doctor for they know their stuff as compared to the other ducks, er, doctors of ANY speciality, especially Infectious Docs...go to Seeking a Doctor forum. Only saying this because from what I understand, most LLMDs are no longer using IV Rocephin as their first defense against this bacteria.
Rosemary
OK, no one jump on me if you are on Recephin and getting better...like Melanie everyone's response can be different.
IMO, my doing 4.5 months of IV Rocephin (that was before I ever saw my LLMD, Dr. C of MO) only has made my bacteria more resistant. I wish I knew then, what I know now. I would never have done the Rocephin only to get a couple of weeks of any type of improvement to relapsing almost immediately after stopping it.
danq
Frequent Contributor (1K+ posts)
Member # 2126
posted
South Side,
While I agree that your lack of progress may be due to the cyst form, I must contest that statement "most LLMDs are no longer using IV Rocephin..."
I don't think that's true. I think that statement reflects Rose's preference, and that of a few LLMD's she knows of.
It is true that some don't use Rocephin; and it's also true that many now recognize that a "cyst-buster" like Flagyl must be rotated in with the Rocephin.
Many also add other orals with the Rocephin; and most do a period of orals-only, after the IV is discontinued.
Dan
Posts: 2420 | From Davis, California | Registered: Feb 2002
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posted
Can I ask which doctor(s) you saw for your treatment? I'm in the same area as you and am having a difficult time finding a physician who will prescribe me a month of IV antibiotics. I'm definitely willing to travel, but would really love to get the antibiotics going now so I can travel for some of the more agressive integrative treatments. What other treatments has everyone used? And which one(s) have helped? Which ones have not helped? Thank you all in advance
Posts: 3 | From Illinois | Registered: Jan 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Reba, these posts were done in 2004. South Side hasn't been here since 2004.
I suggest you make your own post in Seeking a Doctor and ask for a doc in or near Illinois who will prescribe IV.
Hopefully, folks will answer you there.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I saw that as soon as I clixked "post". I was hoping that someone would be tagged or respond to this one as well. I did try a new post in the "searching for LLMD area" also. Thank you for the heads up! I need all of the assistance I can get :-)
Posts: 3 | From Illinois | Registered: Jan 2015
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
In my case, I was on 16 months of abx before I was able to come off and feel like I had made headway. Is your LLMD rotating meds? I do think that is another key factor.
As far as if you should continue, I would talk to your doctor about that since it's really hard for someone to give you advice like that.
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
I've done a couple runs on IV. One for 12 months and the other for six. In both cases I ended treatment not because I felt good, but because improvement has slowed to a stop. Also in both cases, I started to feel good — like damn good — after I had been off the IV for six months. Just one man's experience. Hope you feel better soon.
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
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