Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hi,
Have you seen Dr. B's DVD on Bartonella-like organisms? I believe that's where I saw him say that if people relapse quickly, it's often a coinfection.
I had borrowed the DVD from a friend and am going to buy it for myself. So I'm trying to do this from memory (which is spacey today).
However, I have many coinfections and can go a pretty long time before relapsing terribly. I've had to go off abx twice - once due to liver problems. So I did relapse, and worsened steadily, which was frightening, but I could go longer than what you are experiencing.
So I really wonder about the coinfection theory. I'd love to hear from others about this.
Have you had the CD57 test? Maybe that would help determine if you're still really active with Lyme or not.
Also, have you been checked for things beyond the typical tick-borne coinfections? This week I'm going to have the MDL panel for Chronic Fatigue Syndrome that includes tests for mycoplasma, viruses, etc., to see what else has activated within me. Maybe that's a piece of the puzzle about relapses - just a thought.
Take care, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
It took me almost 4 years without ABX to relapse. And I was told it was coz I didnt treat the coinfection. SO that is very different from the info you have gotten.
Dr B's guidelines does seem to be the best place to look for coinfection info right now.
CD-57 is a possible test, but it is not standardized and how well it can be used to track coinfections or Lyme is not known yet.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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Well,I can tell you I stopped a couple of the very strong herbals I am taking last week and what I thought was a strong bart and babs herx was NOT.
My symptoms started to return with a vengence. I quickly reordered the herbs specific for bart and babs today.
This is the second time I made this mistake! This happene to me with the antibiotics also. The symptoms I got were very specific for bart and babs.
So for me, I definitely feel it is the co-infections. You might want to consider a well placed back up plan like herbs, in case you have to go off antibiotics.
My back up plan is to write myself a huge note, so I won't do this again!
Gael
Posts: 121 | From philadelphia | Registered: Feb 2006
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posted
After my first two years of treatment I relapsed (BAD!) in less than three weeks. That's when I went to a new LLMD who tested me for coinfections. Then he treated me for positive babesiosis, and although negative for Bartonella, he treated me for that as well.
Then I really began to improve. He suggested after 2 years that I try going off the abx. I was scared to death! But I had a wonderful 8 month remission. It felt so good!
At the end of 8 months I knew I was having trouble again....tired and heart palps drove me crazy. I went back on abx and made progress and have now been off for 4 months. So far so good.
At least I know if I relapse again I can get back to where I was before. I guess at almost 70 my immune system isn't what it used to be.
That has been my experience and I wouldn't be surprised if you have experienced the same due to a lurking coinfection.
Good luck!
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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posted
Yes, I believe that the time-scale of resurgence of some of the coinfections after treatment is stopped is much shorter than for the lyme. In addition, the body's defenses are spread more thinly...
The lyme is more slowly reproducing, but inexorable and insidious, attacking many different parts of the body. The coinfections, I recall, hearing, stay mainly in the blood, but have the potential to reproduce much faster.
If you have a co-infection that flares when you stop abx, it is propbably sensitive to that abx. The co-infection Ehrlichia responds to many of the abx used for lyme, for example.
However, if you have the coinfection Babesiosis, you still might have this effect because treatment for the lyme may free some of your body's defenses to fight the babs. For me, having the Babesia prevented me from progressing past a certain point until I had intense treatment for that coinfection.
The same sort of thing may happen if you have bartonella, too, but I don't know too much about that, not having had it. DaveSPosts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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This happene to me with the antibiotics also. The symptoms I got were very specific for bart and babs. 
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