littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
This question is not for me personally because I haven't been fighting that long yet.
But I read somewhere that someone had been trying treatment for at least 2 years I think with NO improvement.
People were telling her to look at other things like MS, that is may not be Lyme.
So it got me thinking, how long do you try treatment without results before you start revisiting the diagnositc stage, espeically if other things were not completely ruled out?
I realize it takes a long time to get better in some cases, but don't you usually see at least a sign you are moving in the right direction??
joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Up.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
In my opinion, there are signs you get better slowly. The cycle herxes / improvement is one.
Energy level will slowly increase too, if eatment is right. GI tract will be working better, symptoms will lessen in general despite herx / waning phases. My food allergies / sensitivities slowly disapeared too.
I don't know how is it possible to be on a protocol even for one month without seeing improvements. I wouldn't stick on something for more than a month if I felt no improvement.
I hope other people chime in to tell their experiences.
Posts: 6199 | From Brussels | Registered: Oct 2007
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Yes, sometimes patients treat for years without evident progress. This can be due to inadequate treatment, undiagnosed infections, inefficient detox pathways, poor diet, multiple exposures, or virulent strains.
In Lyme, we frequently revisit the diagnostic stage. Mostly, patients and doctors look for infections that may have been missed. Sometimes patients were not tested for co-infections. Sometimes gastrointestinal parasites need to be addressed. Sometimes opportunistic infections require treatment. Most recently, XMRV (a retrovirus) is coming to the forefront as a co-infection that may prevent effective treatment.
Diagnoses like MS are usually a result of Lyme, and do not indicate that Lyme was a misdiagnosis.
But most patients see signs of improvement along the way. The most common are the herx reactions (feeling sicker as microbes die off and your body deals with the neurotoxins and inflammation). Some patients don't herx at all; they just feel slow and steady improvement.
Patients who go for years without improvement often become some of the best informed, as they constantly search for reasons for their lack of progress.
I herxed tremendously for my first 18 months of treatment, then it leveled off. I've been in treatment for 24 months, and even on the very sick days, I've always known my treatment was working. I would encourage anyone who had no signs of progress after several months on different antibiotic combinations to revisit the diagnostic stage and look for anything that may have been missed. Or consider changing doctors. It's a tough call, because sometimes it really does just take effort and patience to get well.
littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
It's sad, it really is. I guess the reason I know deep down it is Lyme is because I almost immediately began herxing, within the first 36 hours of the antibiotic. And it wasn't even that high of a dose apparently.
I can't imagine continuing treatment without some sign that something is getting better, anything.
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