posted
I realize to post this question here where likely many are still in the throes of recovering from lyme, and specifically I am referring to chronic lyme...may not get very many responses.
I have read about stopping abx after being two months symptom free and as I right now analyze what to do next in my treatment...would like to inquire about how accurate is this?
Is there anyone who was symptom free for two months then stopped and is recovered from this insiduous disease?
I am worse!! And my gut is a mess even despite all the probiotics. The pain everywhere is intense and my speech and comprehension is a mess. Although, still...I am also doing better than I was. So I know progress has been made.
Just don't know that my sensitive body is tough enough to last longer on abx.
Thanks for any feedback. I also know that there are many who are in remission from herbs and other alternative measures. I think my main things is I fear that if I stop abx now and continue to alternative, which is what I want to do, that I will create a stronger relapse.
I know each case is different so that makes it even harder to compare notes.
Actually...I would love to hear that many have been on abx for the recommended duration of 1-2 years and went 2 months symptom free and are now leading full, rich healthy lives! Anyone?
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Good morning, Painted!
I began treatment last June for neurological Lyme, manifested primarily by very bad headaches that lasted not days or even weeks, but MONTHS.
After much misery throughout a summer of treatment, and a final round of unpleasantness known as "Flagyl," I emerged in November feeling almost like a new person.
The entire month of December passed without my head giving me so much as a twitch of pain.
I dutifully stayed on my abx but in early January, called my LLMD and proclaimed, "Ha ha, I'm CURED!!! Two months (almost)!!! NOW CAN I STOP???"
They said, "Errr, well, we'd go another month, preferably, then we will see. If you quit now, we fear you will be back in a couple months."
Well, I didn't quit, and lo and behold, another seige of headaches began in mid-January that lasted a month and would have taken me down from any but the most understanding job.
I have a rather weird type of Lyme which mercifully spares my body but attacks my brain in a sort of MS relapsing/remitting fashion. My continued hope is that it will get longer and longer between these "seiges" and finally they will completely stop.
Thus, I think even TWO months symptom free is not necessarily enough for severe neurolyme like yours sounds to be.
Just my opinion, of course. My daughter, whose only symptom was painful knees, became symptom free after six months treatment. She's been off abx for three months with nary a peep of a relapse so I'm hoping that was the right decision for her!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Ditto ......... we are in the same place PT. My digestion is a mess and I take a bunch of probiotics and have through out this process. I am thinking of rifing.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
| IP: Logged |
posted
Actually...I would love to hear that many have been on abx for the recommended duration of 1-2 years and went 2 months symptom free and are now leading full, rich healthy lives! Anyone?
I am in that category. You can read my symptom/treatment history in the Success Stories thread.
I think my main things is I fear that if I stop abx now and continue to alternative, which is what I want to do, that I will create a stronger relapse.
Everyone is soooo different, but since you are looking for opinions. If you went to alternative it could very well work. Even if it didn't, you could always go back to standard and if that happened I do not believe it would make much difference in the long run. Maybe switching to alternative temporarily will give your gut time to heal.
I believe the thing to do is to determine what protocol you want to follow and find a doctor that treats with that protocol. For a patient to try to treat him or herself ``has a fool for a doctor.'' My doc who has been treating lyme patients for over 20 years went to another doctor when he came down with the illness.
Again, just my opinion.
-------------------- Jack Posts: 385 | From South New Jersey, USA | Registered: Jul 2001
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Painted, you might want to private message MAP and some others who are knowledgeable about alternatives to ABX. Or make another post, perhaps with a title like 'going from ABX to alternative?' or something, in case this one is missed.
Though I would be concerned as your neuro symptoms still sound quite severe -- the speech and comprehension problems in particular. Have you tried IV or even Bicillin injections to circumvent your tummy issues? Because even though you've stated some progress, sounds like you've a ways to go yet.
Wishing you healing,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| 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!
![[confused]](graemlins/confused.gif)
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic