Post subject: Herxing - "no pain no gain" a dying theory
Posted: Mon Feb 18, 2008 2:51 pm
Joined: Sun Feb 17, 2008 9:42 pm Posts: 2809 Location: USA
Herxing - "no pain no gain" a dying theory (patient opinion's from informal poll below)
LLMd's quotes regarding herxing
Your brain will tell you that since the Herxheimer indicates the antibiotic is working, to stay on them. Please ignore your brain. Since 1988, with well over 600 Borreliosis patients, I assure you, going off antibiotics is the better part of valor. We do not need any heroes or heroines. Toughness is not needed. "No pain, no gain" does not apply to Jarisch-Herxheimer reactions! The turtle wins the race, not the rabbit in this case. This particular LLMD has now treated far more patients, getting many well using mono therapy (one antibiotic at a time) and literally had a woman get well using "slivers" of Flagyl 4 days a week. It proves low doses work. If his patients hit a herx, he has them back down immediately. This is also very common with Md's treating Sarcoidosis, a similar bacteria. They start with 25mg of Mino (as an example) an slowly, slowly ramp up - ALWAYS avoiding a herx. Maybe we could learn something by this. ~~~~~~~~~~~~~~~~~~~~~~~
In truth, a severe Herxheimer reaction is a sign of poor elimination pathway drainage, poor organ support, and poor treatment by your doctor. The bodies of most chronic Lyme sufferers are toxic dumps to start with, therefore, if a doctor does not get the pathways of elimination open and working, the body grows even more toxic as the bacteria begin to die and their toxins dump. Many doctors think good treatment is indicated by the fact that you feel like crap, i.e., worse than usual, which they feel confirms that they have selected an effective antibiotic. Most of my chronically ill patients cannot afford to feel worse just from the treatment. The person with Lyme disease has already suffered enough; they don't need to go through a "herx" just to prove they have Lyme disease.Dr. Jernigan-more here: http://findarticles.com/p/articles/mi_m ... 70382/pg_1
If you can produce a herx on small doses, then there is no reason to do a higher dose. (Retired LLMd)
My Own Experience w/horrible Herxing (below patient opinions)
Much has changed since I started LD treatment in the summer of '06. The first thing I learned was "hit Lyme hard, with heavy doses and herx hard". People would congratulate me when I would post (at other fourms) I was having an extremely hard time herxing, "the buggers are dying, good keep going!" they'd reply. I have had 2 LLMD's one very conservative who would pull me off antibiotic when herxing became intolerable and the other would say "Keep going, sounds like one hell of a herx!"
I don't think they understood the depth and severity of the pain I have experienced. I normally chose to drop in dose or stop entirely. But, I have also tried following my (hit hard) ILAD Md's instructions and being told that herxing is great and believing that with each herx I would get better and better, but that never happened, I never once felt better after herxing hard. In fact, my herxes would not end, I would ultimately always have to stop the antibiotic and it would take weeks sometimes months (bicillin) to get my body back to a tolerable, functional level of living. Not pain free, but just tolerable, what I call "lyme normal" for me.
In the fall of '07, I started Bicillin at 2 shots per week. I herxed so hard for 2 months straight, I truly believed I injured something internally, ultimately winding up on the floor room spinning and pain levels unimaginable. Still my LLMD urging me to go on, because it was one "hell of herx!" NO - I stopped there and decided never again would I allow myself to get to this point. Later that same LLMd told me that herxing too hard can actually kill. Not much later, a video from an LLMD conference was released that explained this - it is true. So know your body, know when enough is enough.
One wise LLMd told me that if I am herxing on 1/4 doses of what is normally prescribed, then I simply don't need to do the bigger doses.
It dawned on me, increased pain or psych symptoms could NOT be a good thing. Pain management Md's have told me pain actually can weaken the immune system (see post regarding getting pain levels under control) Herxing creates toxins, toxins create inflammation, inflammation can create autoimmune diseases and pain causing the immune system function to decrease even more. How could we get well under these hideous conditions? Not only that, but my personal opinion, I have seen enough people on 3 or more abx herxing like crazy and still not getting well. On the other hand I know of people who have done mono-therapy (one abx at a time) and they did get well. We are all different.
I started to "investigate" what other patients LLMD's thought about herxing and much to my surprise the "no pain, no gain" is dying out. Many LLMD's having patients pull back on antibiotics when herxing gets too hard and many are now pulsing antibiotics and using lower doses and ramping up extremely slow, i.e, half doses 3 days per week and gradually, gradually increased after a few weeks.
Well I am from the old school of Lyme already and now have realized that herxing hard may actually be causing damage. The theory is to have a mild increase in symptoms and feel better and better.
I never really progressed at all with each herx , never did my herxing become easier over time or with change or increase of antibiotics.
Where was this great payoff for hanging in there? I surely hadn't experienced it.
In the winter of '07 I started Bicillin again, this time at 1/4 the dose of the first round and I herxed and herxed, but at a much more tolerable level. Finally after 5 months the herxing was once again too much so I stopped. But noticed this time, I did improve slightly (after I was off the shots for about a month). The LLMD that told me "If you can induce a herx on small doses then you don't need higher doses" makes the most sense to me. I will never again allow myself to herx hard nor for months on end - ever! There was no pay off for me and if you aren't feeling better after herxing, talk to your LLMd. Also, ALWAYS ask for symptomatic relief, don't be a hero, get pain medications, anti-anxiety meds, whatever helps you to make it through the day. There is no reason to suffer when there are medications that can help.
In the end and now 8 years later, looking back I was uninformed. I herxed until I thought I would die, no joke. I didn't know any better then, years ago now. You have to learn to follow your gut (God). Looking back, most of the time I didn't have peace with the treatments my doctor suggested, some I pushed through other's I didn't, none were worth it. But the lyme community kept telling me I had to get worse before I got better, yet they weren't any better. It seemed like a lie. It was a lot of trial and error and realizing I was on my own path, that none of us get well the same way. I finally found a "tolerable" combo of antibiotics I could handle. Herxing in my opinion is extremely overrated and probably misunderstood, it truly is the body crying out for help from being overloaded w/toxins and it never made me feel better. It was lower dose, slow treatment, time, time, time - years and detoxing, replenishing minerals and vitamins through injections and an exercise program (you won't get well without exercise according Dr. Burrascano the pioneer in Lyme treatment) that eventually took me to a newer better level.
Informal Patient Poll on Herxing
I "polled" patient opinions at a Lyme Disease forum asking about herxing and I found a "new" attitude of herxing amazing, here are what some lyme patients said:
#1 I believe Herxes are over rated.
My LLMD has said that only about 15% of patients truly herx.
I did IV Rocephin for 8 months-it has done the most good for me so far-no classic herx.
Mino and Doxy were the hardest for me-due to intolerance-not herxing.
Thanks for posting this-I think a lot of people are put in harm's way when they think the worse they feel the better they are going to get-when really their body is taking a beating from the meds-not the die off.
#2 There may be a lot of people who think that herxes get worse and worse when actually, they are supposed to get less severe with each one.
That's probably a good way to tell the difference. I think that if it keeps getting worse, we need to look for another reason besides "herx".
(Note regarding this post: This is also in line what another more compassionate non-ILADS LLMD said, "Herxing is a slight increase in symptoms that lasts a very short time, where after you should feel better and better").
#3 I have trouble with Ceftin now, too. Am I allergic? I won't wait for an American doctor to tell me I am. What makes them an expert on any skin rashes I develop? They couldn't even agree on whether the rotting skin I had on me was eczema or psoriasis. Nor could they diagnose a simple egg allergy.
My advice - think for yourself. I will never put complete faith in any doctor to save me, no matter how many years of schooling they boast. In fact, I'm not sure I put any faith in them anymore. Last year I was dying, and not a single one cared - not a single one - and I can't seem to forget how they all treated me when all I ever asked for was their help.
(Note: I agree totally, we must listen to our bodies, pain is never a good thing, we have to be able to play a roll in our health care - do not put 100% of your faith into any Md - listen to your body!)
#4 Some people are of the opinion that the harder the herx like reaction the better. I totally disagree. The reason I disagree is I lived it for about 2 yrs.
It is not normal or good for anything when people describe being in a constant herx reaction with abx. It is the body and all organs screaming HELP ME.
My LLMD used to say increase dosage to this dosage...until you feel better. I used to wondered when in the world is that day going to come?
This LLMD is also a strong believer in backing off when the going gets tough. He believed you can do more damage and have more set backs if you continued to take abx and try to kill all trying.
Even though he is my ex-LLMD (at this time in my life), he is one smart lyme literate MD.
#5 Cytokine storm
A cytokine storm is a potentially fatal immune reaction consisting of a positive feedback loop between cytokines and immune cells, with highly elevated levels of various cytokines.
When the immune system is fighting pathogens, cytokines signal immune cells such as T-cells and macrophages to travel to the site of infection. In addition, cytokines activate those cells, stimulating them to produce more cytokines.
Normally this feedback loop is kept in check by the body.
However, in some instances, the reaction becomes uncontrolled, and too many immune cells are activated in a single place.
The precise reason for this is not entirely understood, but may be caused by an exaggerated response when the immune system encounters a new and highly pathogenic invader.
Cytokine storms have potential to do significant damage to body tissues and organs. If a cytokine storm occurs in the lungs, for example, fluids and immune cells such as macrophages may accumulate and eventually block off the airways, potentially resulting in death.
#6 Lyme treatment shouldn't really be based on herxing, so much as whether or not the antibiotic is helping. Some patients do not herx at all, and yet improve. That's what the key is.
#7 Drugs can make you sick in many ways.Toxicity is a major one. Perhaps the drugs themselves, or their killing power, upregulates inflammatory cytokines to the point where those cytokines damage. Do you know how anthrax kills? The toxin upregulates your own inflammation to the point where IT kills you. If you are in that much pain, even if its just that killing some bugs in your particular system upregulates inflammation to a damaging point, then you must not take those drugs especially at a high level.
#8 I also herx very hard and it never stops until I stop the abx. I am one of those people who absolutely cannot do high dose abx. I have been sick way too long and I need to go slow. I do make progress on abx if I go very slow, it takes a long time to see the progress, but it's there. My doctor said it is not necessary to go through a lot of pain to get better. He said to stop taking the drugs if it gets too bad. Sounds kind of sadistic to me for a doctor to say you have to go through all of that to get well.
#9 An LLMD who recently retired (Colo.) believes the herx should not be strong.
#10 I'm not sure where this "no pain, no gain" philosophy came from but it's not necessarily the best way to go. This idea about getting worse then getting better has been around for a while & it can be applied to many different illnesses. I can see if it lasts a few days & you can still attend to your daily chores or whatever but going on with endless herxing seems unreasonable to me - whether it's from alternative medicine or pharmaceuticals. I have a lot of doubts about this idea of treatment & whether it actually has merit.
#11 I can tell you my LLMD ....also very well known...takes the opposite approach. He is VERY, VERY sensitive to the severity of the herxes; and is clear that a real bad herx can be very damaging or even fatal. He takes strongly into account whether you have any other medical concerns; high blood pressure, high cholesterol, heart murmur, etc. He is very cautious if you do; will refuse to start you off on lots of meds because first he wants to see how your body handles it. He always expresses concern about the severity of a herx, and potential damage thereof.
Below are some links regarding herxing. I think the bottom line is, we each know our own bodies and I now believe there is a way to make a slow and steady progress, we don't have to die trying to kill this bacteria! Phew! That feels so good to know, because I have had enough pain to last 100 lifetimes.
Take it easy! Remember, herxing hard does not equal getting well faster, it could mean damage is occurring.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~ All information contained herein should not be used as a substitute for the advice of an appropriately qualified and licensed physician or other health care provider. The information provided here is for educational and informational purposes only. In no way should it be considered as offering medical advice. Please check with a physician if you suspect you are ill. NO LIABILITY WILL BE ASSUMED FOR THE USE OF THESE ARTICLES. The information contained is not intended for medical advice. You should always discuss any medical treatment with your Health Care Provider.
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