posted
It is always taken at face value that a herx reaction is the result of Lyme bacteria dying. Therefore it's a sign that you are making progress.
Sorry, but this leaves me with many questions, such as:
- What if other bacteria can cause a herx? Bacteria that do not cause Lyme. Who has proven that only bad bacteria cause a herx?
- What if a herx is the result of the bacteria trying to create a smoke screen as they escape, much as a squid shoots ink, then disappears? And nothing really gets killed? Who has proven herx = death of bad bacteria?
- What if you "herx" horribly when you kill, let's say, 1% of the bad bacteria. But then this causes a reaction that creates another 2% of the bad bacteria, setting you further back.
These are all questions I have asked myself over the last 5 years of treatment, as I slowly get worse despite different doctors, different treatments and different antibiotics after 20 years of infection.
I herxed for 5 years, on abx and off, and I've never felt better for 5 minutes.
Discuss.
Posts: 252 | From NJ USA | Registered: Mar 2004
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
My question would be did you test positive for LD? If not it could be possible that you have another issue, not Lyme, and that is why you have not gotten better on antibiotics.
It seems that in 5 years you would have at least seen some amount of improvement.
I would look for other causes for why you haven't felt better for even 5 minutes.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
posted
One of the things we have to be wary of is mistaking adverse effects of our antibiotics for herxheimer reactions. Unfortunately I think this happens alot, especially with symptoms like fatigue, headache, depressed mood, etc which are common side effects.
Posts: 195 | From Manchester, CT | Registered: Jun 2008
| IP: Logged |
D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
I can only go by my own observations using Rife inspired frequency treatments, but the Herxheimer effect was well established with other spirochete diseases, long before Lyme became a major problem.
Our treatment consists of specific frequencies that only kill specific pathogens. When the frequency 612 Hz is used, it is specific to Lyme. It has been observed under a microscope killing the spirochete, and it is not known to kill anything else. As a control, I am also exposed to these very same frequencies my wife uses. I never experience any reaction, and neither does any other non-infected person. She has had very pronounced Herx effects on many occasions. Now they are less, but still happen to a leser degree.
My proof is that she is far better than she was in the beginning, and has held this 95% status for a few years now. Not cured, but well controlled. We also treat for Babesia, as she has symptoms of this co-infection.
You have a point, that there could be several other pathogens along with the Lyme. That is part of the treatment problem.
My thoughts on this are to use a broad spectrum pathogen killer over a longer time. MMS has the properties to accomplish this, but it would have to be in low doses for a long time.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Funk is right. I have had several meds that I had to stop taking due to adverse effects to them. It was like an unending herx because I just can't take certain meds and I can't do large doses.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I think that's why there are so many questions posted about herx vs. allergy to a med vs. reaction or side effect.
It's hard to tell the difference sometimes.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
| IP: Logged |
posted
I have kinda grown weary of this "herx" term as well over the years.
I would like to see a scientific reason why every 4 weeks I feel like absolute hell. It's a pattern. Some say it is the cycle of the bugs but I would like to see some hard evidence.
With the treatment I have been on, my blood work is looking better and better but my symptoms are not... My CD57 and IgG's are still low and my Fry still does not look good but other than that, alot of things look much better...
There is so much mystery to this illness and everything is grey, not black and white.
Posts: 458 | From Miss | Registered: Mar 2009
| IP: Logged |
posted
My doctor told me that other bacteria can, and do, cause herxes. That being said, if you are having a herx, the antibiotics are doing something- whether the bacteria is Lyme or not.
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
From my understanding a true herx only last for a few days.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
posted
or hours...
Posts: 819 | From East Coast | Registered: Apr 2009
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
The "herx" I think I the immune system releasing a cytokine storm of inflammation as a result of the bugs dying off.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
losferwrds
Unregistered
posted
What does your blood work show?, 5 years , if don't have liver or kidney issues, your experiencing med side effects in my non medical opinion. What is your protocol?
Either that or your just infested, look at guys like lymetwister that guy is ravaged with with disautomanis, pots, major immune deficienys, parisites, ya may want to PM him, he may give you some insight.
IP: Logged |
posted
Google "Jarisch-Herxheimer" .. It's not a myth.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
"The Herxheimer reaction (also known as Jarisch-Herxheimer or Herx) occurs when large quantities of toxins released into the body as bacteria (typically Spirochetal bacteria) die, due to antibiotic treatment or rapid detoxification.
Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins via the natural detoxification process performed by the kidneys and liver.
It is manifested by fever, chills, headache, myalgia (muscle pain), and exacerbation of skin lesions. Duration in syphilis is normally only a few hours but can be much longer, up to months or years, for other diseases. The intensity of the reaction reflects the intensity of inflammation present.
The Herxheimer reaction has shown an increase in inflammatory cytokines during the period of exacerbation, including tumor necrosis factor alpha, interleukin-6 and interleukin-8."
The New England Journal of Medicine, The Lancet, The Journal of Infectious Diseases, Reviews of infectious diseases, British Medical Journal, Clinical Infectious Diseases, Journal of antimicrobial chemotherapy, Journal of Clinical Neuroscience, Bulletin of the World Health Organization, Journal of the American Medical Association .... all of these and many more have published articles on the Jarisch-Herxheimer reaction.
Ayone who has any questions or doubts about this topic, please seek out and read the scientific and medical articles about it. It is a proven reaction to *certain* types of bacterial lysis.
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
That is right. You have to understand the
spirochete is inside the cell. The antibiotics have
to get into the cell to kill the spirochete. When
they do that cell is more damaged than it was with
just the bac. in there. It is now filled with
toxin and is floating around everywhere for our
lymph and trash system to pick up and remove. It
is a very large job for which we can get sick.
The cycle thing may be that time our bodies take
to replace cells destroys and damaged. I would
say it is how well it is killed. From what I hear
docs love to hear we are herxing. The line is
defining how many cells we can afford to lose and
what we can do to replenish asap.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I have definite (read: put me in the hospital) J-H like reactions ("herx") to both antibiotics and antivirals. I see a brilliant ID doctor. He and my PCP are amazed at what happens to me. I get incredibly ill starting on day 10-14 after starting an antiviral or an antibiotic. (The one that put me in the hospital was tachycardia that lasted for hours). I stay ill (not as bad, but definitely sick) for about 16 weeks, then I feel better. I am better than I was at the worst of my illness. Much better. Both antivirals and antibiotics have helped me.
If you have been treating for 5 years with antibiotics and are not any better, then you need to look at viruses. Consider: enterovirus, EBV, HHV-6. See: www.hhv-6foundation.org and www.enterovirusfoundation.org for more info.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I agree. It may indeed be viral or some other infection the med if not capable of killing.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Posting just part of the page:
This was written by an LLMD
Some physician's feel that Lyme is like a donut covered in powder, but the powder is a biotoxin or "endotoxin." And some patients are very poor at removing these toxins.
These biotoxins mess up hormones, mess up your weight, weaken you ability to fight infections and cancer, lower your natural pain killing endorphins, undermine sleep and thinking. These are just a few examples. The bottom line is that biotoxins can leave you very ill and in an unknown percentage can kill.
Sincere physicians treat many patients with antibiotics, and yet this releases biotoxins and endotoxins from the Lyme, and these are biologically active chemicals that effect genes and commonly increase weight, increase mood trouble, and increase inflammation and forty other problems.
My opinion is that it is a proven fact that Lyme has endotoxins in the small abstracts below. But what is an endotoxin?
Simply, they are substances on the outside of the lyme bug, in its outer shell, which is typically released when the lyme bug is disrupted or destroyed.
Endotoxins are very active molecules that cause severe allergic reactions, fever and influence your immune system significantly. Some endotoxins are so strong they cause you to lose your blood pressure and die from the loss of blood to vital organs, or from severe diarrhea if the endotoxin is in the intestines. Obviously, Lyme's endotoxins do not act this particular way.
Endotoxins are a made of two parts: a fat or lipid bound to a polysaccharide chain in the lyme bug's outer shell. Endotoxins are like other biotoxins in that their goal is to help the bug survive.
Some endotoxins are released in the body to make it safe for new lyme bugs, or when attacked by your immune system attack cells. The full actions and types of Lyme's biotoxins and endotoxins is unknown.
Biotoxins exist in many types of creatures: tetanus, botulinum (botox), spiders, algae, ascaridin (gut parasites), staph, strept, babasia, lyme, special fish, clamydia, tuberculosis, fungus or molds and viruses.
Biotoxins are proposed to be tiny molecules used to survive by effecting the host�s body in many ways that helps the infecting agent survive.
Labs that must be checked in all Lyme patients are:
Leptin (LabCorp test code 146712)
Alpha MSH or Melanocyte Stimulating Hormone (LabCorp test code 010421)
The last lab listed, or the HLA lab has been found to provide some specific genetic abilities to removal Lyme toxins. Our new Mold Warrior book has the table that shows which people have trouble removing Lyme biotoxins -- so they just float around the body forever messing up DNA and the body.
MSH is a massively critical hormone that will be a hot new treatment in future years and help with acne, obesity, addiction, sleep, fatigue, etc. If your MSH is low you clearly have massive toxins or inflammation that is at a dangerous level. You will need treatment with someone with is up on this 2006 medicine.
Leptin helps you see if the biotoxins have messed with the fat cells. It is a sign common in Lyme biotoxins and massive inflammation. (Reading it is complex.).
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
As far as biotoxins, according to the theory - partly presented above - some people are of a certain HLA type whereby they do not make the antibodies to get rid of the borrelia toxins normally.
If those toxins are not mechanically bound by something (cholestyramine or other agents), the toxins will always be present in the body, disrupting normal function. The person will never get well.
This article is very long and complicated so I will post just a small part of it. To read the rest, go to the link above.
Lyme Disease Toxin Because many of the symptoms of Lyme disease involve the nervous system, it was speculated that the spirochete produced a toxin that disrupted normal nerve function.
Through the use of DNA manipulations and a database of known protein toxin DNA sequences, a match was made with a selected Borrelia burgdorferi (Bb) gene and a specific toxin in the database. Protein generated from this cloned Bb gene was examined biochemically and found to have characteristics similar to that of botulinum, the toxin of Clostridium botulinum, a zinc endoproteinase.1
The toxin from Bb belongs to a family of toxic proteins known as "zinc endoproteinases" or metalloproteases, and includes the toxin from the organism causing tetanus as well as those from many other well-known infectious diseases.
The structures of this family of toxins are all very similar, as determined by x-ray crystal analysis.2 They all contain zinc and perform the same proteolytic function, namely, cleaving the chemical (covalent) bond between two specific amino acids in a particular protein found in nerve cells.3
The substrate for this enzyme is very large, implying that any inhibitor of enzyme activity blocking the entry of the substrate into the active site must also be very large.
One reason for learning the structure of the toxin (including the active site) is to determine the geometry of this site, the exact positions of the atoms that bind other atoms in the substrate. Knowing the arrangement of these atoms permits the development of inhibitors of the toxin, substances that compete with the normal substrate for active site occupancy.4
Action of Toxin The action of botulinum (as well as the toxin from the Lyme spirochete) is to prevent, through its action as a proteolytic enzyme, the release of the neurotransmitter acetylcholine.
Nerve endings may be associated with other nerves or muscles (the neuromuscular junction). To understand this mechanism in greater detail, consider the basic principles of nerve physiology described below....
AND for some help in what to take to help deal with the toxins
Listing 1: Dietary Supplements Increasing Acetylcholine Synthesis Improving Neurologic Function
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Also consider that some of us have methylation cycle defects that impair our ability to make glutathione. Glutathione is very important to detoxification. http://www.lymeinfo.net/methylationblock.html
Some of the methylation cycle mutations can cause the following problems (depends on your specific mutations as to which ones may be problematic for a given individual):
tissue healing / dna repair
difficulty deactivating viruses
heavy metal detox (makes borrelia harder to get rid of)
difficulty clearing ammonia (also increased by borrelia)
can't clear many other types of toxins
more severe parasitic infections
Looking at the list of supplements for acetylcholine synthesis - I can see that methionine can be very much affected by methylation cycle mutations.
B6 can be a problem for those with PKU problem that has been written about recently on this list.
So, some of these genetic issues (HLA/biotoxins, methylation cycle mutations and PKU) could be the reason that some may not get much if any improvement.
Apparently IgG C3d Immune Complex is usually elevated in lyme patients. Mine was tested in the first year of treatment and it was off the charts. I was told that we were killing lots of bugs but the debri was not getting out of my cells.
We used Pekana drainage remedies and that helped a LOT. I continue to use them as long as I'm on abx.
We don't have all the answers. Not enough research going towards chronic lyme disease because the people who control the money say that it doesn't exist.
In the meantime, we just have to stumble along with the help of our LLMD's and keep trying to find ways to help ourselves. It's frustrating but at least we have some doctors who will help us instead of telling us that it's "Chronic Fatigue Syndrome" or "Fibromyalgia" or .....
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
quote:I can only go by my own observations using Rife inspired frequency treatments, but the Herxheimer effect was well established with other spirochete diseases, long before Lyme became a major problem.
Our treatment consists of specific frequencies that only kill specific pathogens. When the frequency 612 Hz is used, it is specific to Lyme. It has been observed under a microscope killing the spirochete, and it is not known to kill anything else.
Can you point me to published peer-reviewed literature where I can read first hand how 612 Hz was observed to kill spirochetes under a microscope? A pubmed link would be ideal.
Posts: 195 | From Manchester, CT | Registered: Jun 2008
| IP: Logged |
posted
The responses are mostly off topic. I am not interested in my herx. I am interested in herx theory:
- What if other bacteria can cause a herx? Bacteria that do not cause Lyme. Who has proven that only bad bacteria cause a herx?
- What if a herx is the result of the bacteria trying to create a smoke screen as they escape, much as a squid shoots ink, then disappears? And nothing really gets killed? Who has proven herx = death of bad bacteria?
- What if you "herx" horribly when you kill, let's say, 1% of the bad bacteria. But then this causes a reaction that creates another 2% of the bad bacteria, setting you further back.
Posts: 252 | From NJ USA | Registered: Mar 2004
| IP: Logged |
massman
Unregistered
posted
The body is often unable to handle a sudden influx of toxins or toxins on an ongoing basis.
Today most adults bodies and especially the organs of detox - lungs, lymphatic, liver, large intestine, kidneys, skin are in poor health and are pretty much unable to do their jobs well.
And of course other infectants can produce toxins. Candida is a great example when it is removed too quickly.
IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Patients who are reporting the filament disease are
testing positive for the HLA types described by
TerryK. If we discussed which came first we would
be here forever. It will only be determined by a
mass scientific evaluation. Need lots and lots of
money.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
posted
For 4 yrs solid,I had constant herx. No let up.No matter what I was using. A couple of months ago I tested positive for Pyrroluria. The treatment is rough as the body starts dumping heavy metals and toxin build-up, but I am seeing some positive shifts in my body.Someone here already posted about problems with detox. That is one of the symptoms of Pyrroluria and there are many more anxiety,depression,problems with sun etc. The longer I went the more symptoms I had. http://drrandy.org/article.html Hope everyone will look into this and get tested. Hard to find an Md though, as its new as far as dealing with chronic illness Joyce
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 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/