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.
Posted by 3greatkids (Member # 3838) on :
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.
Posted by South Side (Member # 5594) on :
boy, i need to hear this kind of stuff
spent yesterday crying
Posted by liz28 on :
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?
Posted by South Side (Member # 5594) on :
Major neuro, stregth, balance, speech...
IV Rocephin Doxy Mepron B-12 IM Mag IM suplements up the wazoo
Posted by Melanie Reber (Member # 3707) on :
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]
Posted by rosesisland2000 (Member # 2001) on :
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.
Rosemary
Posted by danq (Member # 2126) on :
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
Posted by dmcbrayer (Member # 5296) on :
I agree that a change to flagyl would be the best idea at this point.
After using flagyl, you might try IV claforan. My doctor says he is having an 80% success rate with claforan.
DMC
Posted by South Side (Member # 5594) on :
thx all, i see dr b in colmar, pa.
i just feel im weaker
good stories help
i want to play w/ my 5 yr old son
Posted by Reba331 (Member # 45154) on :
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
Posted by TF (Member # 14183) on :
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.
Posted by Reba331 (Member # 45154) on :
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 :-)
Posted by tdtid (Member # 10276) on :
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.
Posted by jmb (Member # 18338) on :
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.
