posted
My personal opinion is that anytime you change meds or increase dosage, that results in a true herx. That is when die-off is at the max.
However, let's say you've been on the same meds for several months and you get into a "herx rythm" like every 28 days or so, then that's not really a die-off herx, but rather a flare up.
In other words, i feel that true die off occurs only at the time of med switching or dosage increase.
There are some papers on periodicity of herx reactions but a lot of it is conjecture.
This makes a case for pulsing or rotating meds on a set schedule (like weekly pulse). I think it would be a brutal protocol but would kill things off fast.
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Clarissa
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posted
BAsed on my improvement from Lyme 5-years ago, my answer would be "yes". Hering means killing, killing means clearing, more herxing and clearing means closer to light at end of the tunnel.
It totally su$%s but I think with TBD's, "no pain no gain."
Sorry...but herxing, for me, has always led to eventual clearing of symptoms.
sparkle7
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posted
Good to hear that. I guess I just have a loooong tunnel...
It's just that over the past 10 years, I've heard alot about the "getting worse before you get better" thing.
For other illnesses it's called "a healing crisis" or "you may have alot of toxins in your system" or for people taking guaifenesin - "it may cause you to get worse", or for people who have mercury filling removed, etc. So, it's not just typical to Lyme.
Sometimes I think it may just be a load of junk... I was wondering if there was actual proof that it did mean that "you" were on your way to getting better.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I have to disagree on one point .... and I'm not arguing, it's okay that we have different opinions .
I get better after each monthly herx/flare. Also, my monthly herxes were almost unnoticeable ..... then they were aggravated by Tindamax and became unbearable .... so off Tindamax and they were better again, just a slight change from normal (and my normal is 95%).
Now I've started back on Babesia treatment, was still about 90% of normal on the meds, but my herxes are knocking me down again. So, I think the meds play a significant role in the herx.
Because the bugs are flaring, the meds are able to kill off more.
Of course, this is just my experience.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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TheCrimeOfLyme
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posted
For me, I stay on one med for three weeks out of the month and switch it off to a totally different one on my regular flare cycle. I figure even after three weeks on one med, my lyme is going to laugh at the same thing on the 4th. But thats just me and what I do.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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lymeinhell
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posted
IMHO - Herxing means you're killing something and not keeping up with the dieoff and it's time to detox. I too had the regular 28 day cycles and am convinced it was the Bart, because this did eventually go away.
I was also fortunate enough to have Bart addressed from the get-go and did find myself feeling slightly better after each herx (and have been off abx for more than 3 years now).
Whether killing something means you're getting better - can't say that for sure.
Some of the 'lucky ones' here may have more than one coinfection that need to be addressed in the proper order to be able to get well.
So if you have Lyme, Bart and Babs and your abx only address Lyme, you may be killing off Lyme and herxing, but you won't be getting well until you address Babs first, or Bart first, or whatever.
I also feel that 'toughing it out' to the point of hospitalization is not the way to go. Your body knows when it's time to back off, and always got the approval from my LLMD if I needed to take a 2 day break.
I'm no doctor - just putting in my spare change.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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sparkle7
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posted
I have no problem with people who have different opinions. I think it's good for people to express what their experience is. This way we all can learn.
I have never had a regular herx cycle as some of you have had. If I take a medication or supplement, it feels like the "volume" of the pain is increasing until I either lower the dosage or stop taking it.
I don't know if switching the abx (or whatever) is ideal after 4 weeks of use. It's interesting that you came up with it & it's good if it works. I just don't know if there is a basis that this is effective.
I don't think I have the co-infections. I spoke with my doctor about it. He asked me some medical questions & said that he didn't think I had them. He also said that the tests are notoriously inaccurate. My western blot is also negative - for what that's worth.
I've had Lyme untreated for 9 years. It probably just takes time to get rid of it (if ever). Most recently, I had a major herx from taking a Neuro supplement by Jarrow & I also herx from Cumanda.
I was just wondering if I was actually getting anywhere by going through the pain. I don't believe in forcing yourself to go through a major herx as my doctor suggested that it wasn't necessary in order to get well. I was also wondering if there was any actual proof that herxing means death (or die-off). If they die, don't they just grow back? Does the "cycle" ever end? Or, do you just get it to a point that most are dead & you feel a bit better?
In the natural health profession - they use this idea about "getting worse before getting better" quite often. I was just curious if it had any actual proof. I think it can be used as a smoke screen for taking herbs or drugs so people continue the treatment whether they get better or worse. It makes it hard to distinguish if something is really working. I'm not saying that it isn't valid - I was just wondering if there was evidence that it's actually true.
For example - if I have a headache & take an Excedrine & it goes away, I think - this works. If I have a cold sore & put some aciclovir on it & it clears up in 2 days as opposed to 7 - I think it must be working. If you go through a herx & switch abx or herbal treatments - how can you tell what it doing what? I read that some people are taking abx for 4 years & they are still not well. The same could be true for any treatment & I'm not singling out abx - but how can you really tell what is effective? Is it just intuition? Some people say to me that I should have given abx a longer time to work & that I might have gotten better if I took abx for another month or 3 months or 1 year. Some say to use IV abx, some say it's getting shots, some say herbal remedies don't work, others have studies that the Cowden protocol is 70% effective... It's just that there are alot of variables.
I think Cumanda is effective since I'm herxing from it but how do I really know? Just because something makes you herx does it really mean that it's working? What if you took something that didn't make you herx - would you think it was ineffective?
I'm not trying to be a devil's advocate - I'm just curious... How do you know?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Sparkle: It is good you are asking some very fundamental questions. Probably nobody knows the true answers to this. All we can do is take good guesses.
My wife is like you, she never experienced regular herxing cycles. If she went on full dose of any abx she would just get worse and worse and would have to discontinue, after which she would feel great for a while. Now she is only on herbs.
This might shed some light on my theory about pulsing/rotating. I did a lot of research on low dose pulsing and found out that it is a common treatment for so-called "auto-immune" patients such as RA, Lupus, Fibro. They basically take very low dose minocycline (1 pill) Monday, Wednesday, and Friday. The theory is that low dose pulsing with a bacteriostatic slowly chips away at things inside you that have gone cell wall deficient, cyst-form, L-form, biofilm coated, etc. It is postulated that these things are vulnerable rising and falling serum levels of medicine, as opposed to a continuous high serum level. Following is an analogy from an old post of mine:
quote: The way I see it, it's like a boxing death match. Let's say you go hard on your opponent, he'll curl up into a ball and be impervious to further injury. Continuing at a hard pace would be a waste of your own energy and health since you cannot do further damage to him when he's in "cyst" form.
So once you've dealt him the initial injury, back off and let him come at you again, in a slightly weakened state, but with his guard down. Now attack him again and see him curl up again. Repeat this over and over until he has no more fight left in him.
My analogy is simplistic but I think that's basically the theory of pulsing every 2 or 3 days at low dose - to progressively chip away at the bacteria rather that beating up on a curled cyst to no avail.
But the old blood brain barrier question comes to mind when pulsing on low doses. I guess it depends on if you have CNS lyme or not?
MommaK
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sparkle7
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posted
It's just that you are fighting bacteria that are reproducing.
How can they "collectively" become weakened?
It more like fighting an army rather than an individual opponent.
An army that has fresh soldiers after every battle...
---
I hope people will keep replying to this. This concept is sort of at the crux of all of our efforts at getting well.
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posted
Bacteriostatics I believe affect the bacteria's ability to synthesize protein and replicate. The bacteria are said to be suceptible only during a hatching cycle. So all the "seeds" will eventually hatch, which could take many months in the case of Bb. You'd be rendering them infertile as they hatched.
So many variables and dynamics going on here (esp when you add pulsing). I think I saw some papers out of Europe where they modeled abx vs. Bb as a set of dynamical differential equations, only solvable by numerical methods.
I'm not suggesting everybody go out and start pulsing - my wife certainly never pulsed. But I'm putting it out there to get some ideas flowing.
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sparkle7
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I appreciate that people want to use abx & maybe they are good in some cases.
It just seems like a rather vague protocol. One would think that after all these years there would be a concise method of timing the abx & which ones to use.
When I first started with all of the drugs & supplements for Lyme, it reminded me of being on "do-it-yourself chemotherapy". Abx are powerful drugs & they were being prescribed so non-chalantly. It's left up to the patient to do research & try to figure out what is going on. I never heard of this sort of protocol with other illnesses like cancer or diabetes.
It just seems that there would be a fairly systematic way of going about getting better - especially in light of your mention about "I think I saw some papers out of Europe where they modeled abx vs. Bb as a set of dynamical differential equations, only solvable by numerical methods." - yanivnaced... Lyme has been around since the 1970's at least.
As I mentioned - what is the point of herxing if the spirochetes change form. It may mean you are killing them off but they can reappear. I guess you just have to be consistant & keep doing whatever it is that is causing this reaction & switch to something else every so often. It just seems that I have read so little about what is actually going on during a herx. Maybe I just haven't researched it properly?
The herx is a reaction to the neurotoxins produced when the spirochete dies. What about the other forms the spirochete takes? Do those forms product toxins when they die off? How do we know we are killing them?
Does anyone have any more detailed info about this process? We all go around talking about herxing like experts but do we really know what is happening? It seems people are having different experiences with this. It's not "one size fits all".
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I think the reason there is not a clear cut answer is because everyone is different.
For a person with difficulty detoxing the bacteria once it's been killed, or the abx, or whatever else causes us to feel so bad during a flare, that person will most likely just steadily decline as bugs are killed.
But another person has symptom flares/herxes every month and gets better afterward.
I think that if the treatment, whatever treatment you are on, just causes you to get worse and never see any improvement, that it's either not the right treatment, or you need to look into why you are not detoxing.
I fall into the second category. I took many abx at the same time and never pulsed them. The quantity of abx I took would have put someone who can't detox well or at all into the hospital! Yet I got better with this treatment.
I don't think there will ever be any set way to treat Lyme because it's so different for every one of us.
At this point, I know I have Lyme in the cyst form ... if I take Tindamax, it takes me from feeling normal to bedridden .... I have no Lyme symptoms anymore though .... so we're going after the cyst form gently and slowly with grapefruit seed extract.
We're going after it as slowly as my body is telling me we need to go. What's the point in herxing hard when I'm not having symptoms anyway? Yet early in treatment when I felt bad all the time, we let me herx harder.
So, I think it's different for every person and different at various points in treatment.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sparkle7
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posted
It probably depends on alot of variables like how long you've been ill, genetics, strain of Lyme & co infections, etc.
Does any know if there is any reference materials about herxing just in regards to Lyme? I could do a search on google but I have to go out now.
It would probably be a good idea to have some reference materials just about this subject since we will all have to deal with it in one way or another... despite of the treatment we use.
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