Topic: Herx, flare and relapse: my three best friends, who is who?
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I am really trying to understand the difference between a herx, a relapse and a flare.
Many people, lymies, LLMDs and ducks use these words interchangably. I would like to open up discussion about the differences.
here are some that I think apply: 1) All three include feeling symptoms; either new ones, or old ones, feeling some symptoms stronger now, or more frequently.
2)A relapse happens AFTER one has tried either abx or serious herbal protocols--I will just say TREATMENT in further posts. A relapse is only while NOT treating. An example would be someone treating for 2 months and then a year later they feel symptoms that they label as a relapse.
2) A flare, on the other hand, is an increase in symptoms either while treating or not. A flare can be a herx. It can also be a relapse.
3) A herx is when you are treating and you kill the Bb or other organisms and they create a nuerotoxin that creates the symptoms you experience. A herx can not be a relapse as a relpase can only happen when NOT treating. A herx can be a flare of SORTS, but a flare really is about Bb doing it's THING--not about it being destroyed.
How does one distinguish between a herx and a flare?
Reason I want to know: 1-coz I feel that words are powerful and language should be direct and well understood. 2-coz I have been experiencing sx for months now while treating and am trying to figure out if I am herxing CONSTANTLY or if I am flaring because part of my protocol includes an immuno-suppressant---plaquenil. 3-coz I said so.
Thanks for tolerating me! Trails
[ 15. March 2006, 07:10 PM: Message edited by: trails ]
Posts: 1950 | From New Mexico | Registered: Sep 2001
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
HI Trails~
As I see it (based on my personal experience)
I agree with your definition of a relapse. It happens AFTER treatment has ended. It can happen days to years after the treatment has ended.
In my case, 3 weeks to the day after stopping antibiotics due to a fungal infection in the picc line I relapsed. And I was hit HARD. Fractured sleep, muscle pain, increased nerve pain, etc. It was a true drag.
Interesting to note that it was also 3 weeks to the day after I got the steroid shot to the knee that my symptoms surfaced in the first place. NO doubt in my mind that the steroid shot "activated" the latent lyme in my body.
I would prefer to describe a "flare" as what happens on a cyclical basis (about monthly in me). I would choose to not label a flare as a herx or a relapse....
I agree with your definition of a herx...and for me it consistently falls on day 10, 11 or 12 after I start a high dose antibiotic. And the herx, for me, has come in a variety of ways....increased (horrific) nerve pain one time, tachycardia another, increased CNS problems another, and feeling really sick two other times...
For me, I would say a herx is a one time event that occurs within the first two weeks of starting an antibiotic.
I'm not sure what to make of your herxing constantly....all I can say is that it has not been my experience to do that. I'm NOT saying that I feel well after my herx. Far from it. But I feel REALLY awful during the herx...and it is relatively short lived. Then I go back to my usual feeling badly.
A flare occurs about monthly, and occurs whether or not you are on antibiotics. And you feel worse during your "flare" time.
Is this as clear as mud? Maybe I'm still clearing the N. Mexico sand out of my brain...
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Boy Trails,
I'm with you on the constant herx thing. It gets soooo old!
It seems like everything I try produces a herx, even things that are supposed to help relieve the herx. Such as: hot epsom salt baths, vinegar and honey (that was such a good drink too. I drank it hot and loved it til my joints began to scream)accupuncture, and now the Healing Lyme" herbal protocol.
Maybe we are just so full of the bacteria that everything we do produces a large kill.
I'm looking seriously at removing my root canals and hope maybe then I can begin to deplete some of the bacterial load.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hey trail
I agree with timaca in all the explainations of these words.
Although I know it is not the norm, I herx almost constantly on treatments, I have done in the last 3 years. Don't really know why.
I know the plaq is a question with many questions like: If I stop the plaq & just do the other abx and the herx's are less severe is it because the palq isnt in the abx combo anymore & not having the same abx penetration- And thus,less of a herx?
Or is it because the lack of the plaq with the abx combo and there are less side effects caused by the plaq?
Some people argue that people who think they are herxing are in fact experienceing side effects from the plaq or meds. This is possible,.
But when I have subtracted the plaq from my combo in the past, I stopped having what I call my classic herx recation: which is head pressure without pain.
I haven't heard this as a side effect from any of the drug makers listed side effects of this med.
I hope I haven't confused you further.
Take care dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Good Q. It will, no doubt, elicit a plethora of non-overlapping answers! And to add to that cacophany...
Relapse == Agreed. Reccurance of symptoms after period of few/fewer symptoms while off antibiotics.
Herx == Relatively immediate (within a couple of days) reaction to mass die-off of bugs in response to antibiotics. Can include fever, increase in white cell count, and profound exacerbation of symptoms including those of a neurological nature.
Flare == I don't think this has to be cyclical at all to be a flare. It CAN be cyclical but doesn't have to be. Any increase in symptoms due to antibiotics (includes herx reaction), hormonal changes, immune system effects, concommitent disease processes (e.g., worsening of symptoms when get the flu in addition to Bb), etc. This is distinguished from a relapse in that it occurs while relatively symptomatic.
Just my two cents and how I personally use the terms.
Posts: 689 | From western MA (we say buttER and pizzA) | Registered: Nov 2004
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posted
I am trying to understand this, as well, so it is helpful to read all of your experiences.
My friend asked me today if I was sick because of Lyme, the herx, or the meds, and I said, I don't know. All three.
However, I do want to be able to differentiate the experiences in my body, if possible.
I was not prepared for the first herx I got. It started about four weeks into treatment. I thought a herx would start right away and last a few days. But a herx can last months, for me. For example, if I go off abx right now, I will feel better (which isn't saying much). I think tx makes me feel worse, and it goes on and on.
Although yesterday I had a good day, and almost felt normal. It gave me some hope. Maybe I will be able to function again some day.
Pain meds also complicate the picture. I take 15 mg morphine a day which of course calms down all the symptoms.
It's been 8 months on abx, and I only see very slow progress. So I haven't had a relapse because I haven't been symptom free in years.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Hi jeff--I am like you in that I seem to be herxing and herxing and herxing. That is sort of why I asked the question in the first place.
I am trying to differentiate these things too!
If I was to STOP ABX, like you said, I too would become LESS symptomatic than I currently am. So what does this mean?
Perhaps we need a thread addressing this very issue.
I am always reading about how people feel WORSE without ABX...I feel BETTER without abx. The problem is that after a few years, the sx come back and I go down hill again. But this time I dont see any gains from treatment.
(I just want to put here that I am not soliciting for anyone to tell me I need to be on herbs. I want to give long term ABX treatment a try for real this time. And I am aware of the alternative protocols and will be moving into them after I have finally treated this for 18 months or longer with ABX)
I am starting to lose the faith.
It has been only 5 months on ABX so far this time around...but I am much worse and see NO improvement this time.
[ 16. March 2006, 12:01 PM: Message edited by: trails ]
Posts: 1950 | From New Mexico | Registered: Sep 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Trailsey.
Good question, and one I usedta ponder much. Still do, sometimes. I'm an "abnormal" case, though.
I began a severe herx reaction almost immediately when I started treating.
I did not start having "good head days" for about five months.
Now, in the times I am "normal," I can almost pretend I don't have Lyme.
Then it will come roaring back, almost in an MS attack-like fashion, and strike, leaving me holding my head in pain for WEEKS. When it's over, then I'm 'normal' again. (Well, other than I can't remember what people told me 5 minutes ago, etc.)
These aren't relapses since I'm treating. They last way too long to be "herxes." They're closer to 'flares' than anything else, but bear a striking similarity to MS attacks (I was dx'd with possible MS). I too am on Plaquenil. Blood work during these flares shows REALLY low white cell counts.
It's a mystery.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I think the defintions that you've come up with are reasonable but the situation seems like it could be more complicated for some, particularly those who have co-infections. From my understanding, that could be the majority.
Just throwing some thoughts out:
I think many of us could have quite a few infections besides Bb and the standard co-infections due to the way that Bb and co-infections depress our immune systems.
Couldn't one have a relapse of one infection while on treatment for another?
For example, if one has a protozoan infection, couldn't that infection get worse while on treatment for Bb? Same for viral infection, fungal/yeast etc..
Part of this puzzle may be that perhaps one or more infections (possibly unknown infections) will grow stronger while on treatment because it has more resources to grow since you are killing off one of it's competitors.
I've read that there is a relationship amoung microbes in that if the balance of one changes, that usually directly affects another.
An example is when one kills off too many of the beneficial bacteria in the colon, the detrimental bacteria usually grow much faster and make one sick because the beneficial bacteria is no longer there to keep the detrimental bacteria in check.
So, we may be killing one type of microbe and feeling the herx from that while at the same time, another microbe may be growing stronger.
This leads to the possibility that it may be helpful to address each infection in a certain order AND administer certain treatments together.
I'm new to the abx protocols for lyme disease but I assume some of these issues are addressed. The problem though is that there could be numerous unknown infections that are part of the picture.
I'm also wondering about Plaquenil. I've read that it is used to tone down the immune response for those with lupus. It also apparently works for other illnesses that cause the immune system to over-react. I've also read that they aren't really sure how it works. Is it possible that it is depressing the immune system in some way and thus causing other infections to grow even more?
I wonder if a constant herx means that some other infections need to be looked into?
Sorry, I have no answers, just a lot of questions and a lot to learn. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I have been receiving abx treatment of one sort or another since 1997.
In 2003 I was not on any abx at all and that's when my decline started. I guess that would be a relapse although I had not been symptom free.
In 2004 I was on Biaxin and Suprax but my decline continued.
In 2005 I was on Ketek, Plaquenil, Cedax which was replaced by Doryx. My decline continued further, but for the first time ever I experienced herxes from the moment I put the first Ketek pills in my mouth.
I have now been on Flagyl for 4 1/2 weeks.
I have short lived feelings of improvement. It's like one step forward, two steps back.
At this point I don't know if I'm relapsing or herxing. All I know is I want to get better.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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posted
In my case, I have been on abx and made progress after herxing but sometimes after a while (months) I'll find myself just going backwards. I consider this a relapse while in treatment.
I take it to mean the abx is no longer effective for whatever reason and then we switch abx. And I again begin the herx/improve cycle. Making more progress every time.
I would think also if one isn't on an effective abx for their particular situation they would relapse while in treatment. Sometimes it takes a while to get the right one, or combo, and find the correct dose.
This is why working with an experienced llmd with a good track record for successfully treating late stage chronic lymies is key.
Posts: 925 | From California | Registered: Sep 2004
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You mention mention going off abx and being ok for a while...then it coming back.
My LLMD has talked to me about how Lyme and other infections can hide in the gall bladder and tonsils, never fully eradicating. Then it can reinfect the body later.
She keeps close tabs on both, and often has patients get their tonsils removed if they stay enlarged...some even the gall bladder. A friend of mine who had their gall bladder removed, had test performed on it and it was full of the Lyme spirochete.
Just FYI. Something to think about.
Posts: 67 | From Fredericksburg, VA USA | Registered: Jun 2005
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TerryK
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Member # 8552
posted
Pantsinsocks said: She keeps close tabs on both, and often has patients get their tonsils removed if they stay enlarged
That's scares me since the tonsils are an important part of the immune system:
http://www.urmc.rochester.edu/pr/news/story.cfm?id=910 "The tonsils are made up of lymphoid tissue and help the body fight off infection. But unlike the spleen, a major organ that plays a key role in the immune system, doctors can take a small biopsy of the tonsils, getting a look at structures that are present there but not in the blood, which is studied more commonly."
"Sanz's team focused on lymph structures in the tonsils known as germinal centers, where teeming masses of immune cells known as B cells and T cells glom together and swap crucial information about invaders like bacteria and viruses. Such ongoing education is crucial to our immune system - it's how our cells are trained to recognize enemies like colds and flu, and where they learn not to attack our own bodies. Unfortunately, in diseases like lupus, diabetes, rheumatoid arthritis, and multiple sclerosis, our cells don't always learn the difference, and some immune cells become ``auto-reactive'' and attack our own tissues."
The information on the site above makes it sound like one would expect the tonsils to contain bacteria and in fact, that would indicate that the tonsils are doing what they are supposed to be doing.
I'm not a doctor so I'm sure there is a lot about this that I don't know but personally, I'd think twice before doing anything that might cripple my immune system. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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hopeful123
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posted
i don't differentiate btw herx and flare. i am not certain that my llmd pa does either, or maybe she does, but i didn't get the diff.
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