The patient is a physician herself and had been to many alternative, natural, Chinese, homeopathic and conventional doctors. She had taken antibiotics with the original diagnosis of lyme. Additionally the patient was also infected with alpha gal (galactose-alpha-1,3-galactose) which is a tick transmitted allergy to red meat. With the confirmation of lyme and the positive alpha gal at that point we stopped testing for more diseases and coinfections, but there were most likely other lyme coinfections. We could also call this a case of post lymes mast cell disorder.
There are many times in practice where we are lead to believe that if we were just a little more expertise in the case we would get a cure of the symptoms. If we only attended another seminar on a particular therapy like homeopathy, herbs or nutrition, etc. I wouldn’t argue that is not possible, I am sure it is. What I can say that I have experienced is that it is a case of diminishing returns. Even though I have thousand of remedies most cases can the maximum effect homeopathically from ten homeopathic remedies. In fact in spite of having homeopathic medicines from several countries in potencies from LM to 100M. I have found that all of the tools that I have in my practice function about the same way. More expertise in particular therapies is in some sense a case of diminishing returns. It takes more and more effort, time and money to get small, incremental changes in your expertise. To make matters worse the advanced expertise in one particular therapy make it easier to miss the forest while looking at the trees. Being too good in one thing can actually make you a worse doctor.
So I was not under the illusion that I was going to help this case with a change in one of the therapies she had tried, and I committed to myself not to do so. The only role my experience year of experience and many patients had played at that point was to recognize that there are some cases that have the appearance of being uncurable by either natural or conventional medicines, and that this looked like one of those cases.
Maybe you could have observed something that I and a dozen other doctors missed, I am not doubting that. I doubted my ability to do so however. I knew a lot of doctors that this patient had seen and they were skilled and knowledgeable in their profession, both the conventional and natural. I did not try and talk her into any form of treatment, as I did not think that I was going to get good progress, re-traveling well worn paths that had been traveled multiple times in her treatment approaches. So what do you do in a case where pharmaceuticals, energy work, psychic healing, homeopathy, nosodes, herbs, acupuncture and nutrients, and various elimination or blood type diets have failed?
Lyme is never one infection. In years of lyme practice that very few cases have only one infection when we are able to test4e. Ticks aren’t that picky about the hosts that they feed from, and they get bacteria from and transfer it to their various hosts. In fact most species of tick require different hosts at different points in their life. Most ticks have been exposed to several hosts, and picked up a variety of bacteria. You are just the latest stop in a journey for that tick.
Not to mention that there are doubtless many bacteria and viruses that have yet to be identified that are carried by ticks. That’s why it doesn’t make sense running to a specialty lab with a deer tick to get it tested for lymes disease. Even if it doesn’t have lyme then it has some other kind of bacteria or virus. A negative result does not prove anything. A positive result may confirm exposure to lyme, but does not test for many of the other bacteria that can be transmitted by the tick.
This is one of the reasons that we assume that any patient that has been bitten by a tick has a tick borne infection of some kind. It may have the borrelia burgdorferi bacteria but it may have a different type of bacteria that creates a lyme like syndrome. There are several other species of bacteria that are known to cause lyme but are not tested for, we know of about fifty two. Additionally how many hundreds or thousands of bacteria do we not know about.
These other organisms may be even more likely to create symptoms than the classic lyme bacteria. It’s one of the reason I discourage people from all of the various and expensive lyme testing unless they have money to burn. If your mom ever pulled a tick off of you in the summer than you do have tick transferred bacteria. It does not matter if the test confirms this or not, because your lyme may have gone into a form that does not create antibodies and is therefore not beneficial to get tested as it will not show up in a test.
People think lyme is a new condition, and it is almost as if people feel that lyme developed at the same time that the bacteria was discovered and isolated. Yet it appears that even though we have just identified borrelia burgdorferi, the lyme bacteria has been around for quite a while. They recently found a fifty million year old tick inside a piece of ancient amber. And inside that tick was the bacteria that causes lyme disease. So this new disease is actually an old disease is at least 50 million years old.
Human like creatures seem to have been around for a million or so years, so the bacteria was here before us and evolved with us. So we should be able to handle it better. Some people have tried to argue that the reason that lyme is a problem today is that the coinfections are the new problem. Yet if we were to test that 50 million year old tick we would find other bacteria and viruses and and other organism that can affect us like mycoplasms. There is no reason to assume that we are any more infected with tick borne illness than our ancestors. In fact they probably had a much greater exposure.
Obviously if you can avoid getting bit by ticks that is the best way to manage tick issues. However I have just seen many patients do their best to avoid tick bites and still seen them become infected with tick bites. Even if it can be avoided at this time there are all of the bites many of us received in childhood. And the question is not so much how tick bites can be avoided, that information is not what patients come to us for. They come to us after that bridge has been crossed. We have to treat the case as it comes to us, with the tick borne illness transmitted.
It is clear that ticks with lyme were around long before we were as humans, and they have been infecting our ancestors since we have had ancestors. And yet, human beings have not only survived but have thrived. So how did we survive with all of these deadly ticks constantly feeding on us?
Unless you can avoid being bitten by a tick your entire life, it is most likely that you have received some infection from a tick bite. If you have lain down in the grass or walked through the woods you have been bitten by ticks. If you have been a kid then you have been bitten by ticks. If you have dogs or cats that go outside you have been bitten by ticks.They can smell you coming from miles away, they can sense when your shadow crosses them while your walking by and then they latch on to you. They can sense the paths that you have traveled on and wait for you. In short there is a reason that these little ticks have lived for millions of years, they have strategies for getting attached to you.
Often people come in complaining of joint pains and they ask me if it could be lyme disease. Of course it could be and most probably is lyme disease, at least as a cofactor in the symptoms. If it’s not actually lyme disease then they have been exposed to some other bacteria. If they have had tick bites then the have definitely picked up a microorganism from that exposure. There are many different bacteria that cause lyme. Illnesses transmitted by bugs of all types are present in all of us. These is nothing wrong with testing for lyme, the problem is that the testing is just not very accurate. This is because lyme can go into a defensive form where it is hiding from the immune system. In this form it does not make antibodies so it is very hard to detect.
Even with all the focus on the prevention of tick bites and various forms and natural treatment the one thing we don’t really time much time to ask ourself why lyme is such a problem. Of course bacteria can create problems. But we as humans deal with a lot of bacteria, in fact we have ten times more bacteria in and on our bodies than we have of our own cells. Even misconceptions we used to have such as the urinary tract being sterile and not having any bacteria have been debunked, bacteria are everywhere. And yes lyme is a nasty bacteria but we manage a lot of nasty bacteria. In fact most of the bacteria we have in one part of our body is toxic or dangerous to other parts of the body. And our body is able to manage all of the various bacteria without a problem.
So why does our body have such a hard time with lyme now? Even though lyme is not a new disease. Our bodies have had a lot of time to figure out how to deal with lyme bacteria, why should the reaction to lyme be any different than to any other bacteria we manage in our body. When they defrosted and tested the blood of the ice man they found from 5,000 years ago, they found lyme disease bacteria in his blood. And since humans lived outside their entire lives and the chances of getting bit by a tick were one hundred percent we really have to ask ourself why this old bacteria that we have had for at least thousands of years and why these ticks which we have had more many times that amout of time can create such a problem for us.
In addition to ticks, we know that spiders, fleas, body lice (which everyone has) and mosquitos can transmit bacteria. There is no reason to assume that they can not transfer all of the same bacteria that ticks can. Maybe they can transmit even more. So in that case all of the best prevention in the world to ticks in the world does not prevent the transfer of lyme or one of the many other bacteria that can be bad if not worse than lyme disease.
Even in our most modern world it is virtually impossible to avoid getting bitten by something. Our ancestors did not have houses, cars and office buildings. Human beings have been constantly exposed to insect based infections for many thousands of years. Ticks have been around since mammals become mammals. Remember, recently a 50 million year old tick was found in a piece of amber, and the lyme bacteria was discovered inside of that 50 million year old tick.
Ticks and the bacteria have little to benefit by us as their host becoming dysfunctional sick or dying. In fact the longer a virus is around us the less lethal it becomes. This concept is used in vaccination and is called serial dilution. Even before modern medicine people were aware that epidemics did not last forever. And it is not just because the susceptible die from the illness. It is also because the viral strains that were less lethal and made you less sick within reason were more likely to persist. Microbes want to be spread, a bacteria or virus that causes the death of its host is a dead end for that microbe.
Studies have shown that the only medicine that affects the symptoms of chronically ill patients with lymes disease is steroids. So what do we know about steroids? Steroids suppress the immune system and decrease inflammation. So what this tells us about lyme disease based on these results is that main problem with lyme disease is not the bacteria itself. Indeed humans are basically walking balls of bacteria. There is no part of our body that does not have bacteria. So bacteria is something that humans know how to deal with.
The problem in lymes disease (and like illnesses) seems to be the inflammatory response. It is the over reaction by the immune system of some people to the bug. This is why we see lyme cases that are advanced are often in families where there is a lot of autoimmune disease or allergies of other kinds, such as to foods or the environment. It is not people with the weakest immune systems that are most effected by lyme, it is people with the strongest immune systems.
Many lyme patients experience a lot of frustration with the lack of conventional medical recognition for chronic lyme disease. Most doctors today have not incorporated the ideas of immunologist polly matzinger. Matzinger pointed out that the old immune theory that the immune system attacked things that were non-self did not fit the available data. Her alternative was that the immune system simply reacts to all proteins in the environment where signs of infection are present. This includes the proteins that may be in a bacteria or virus but also include our own proteins. These are proteins that make up our own body, attacked by our own body.
By the time a lyme infection become chronic the body is in a cycle of reaction to the lyme bacteria but also to protein of our own tissue. In people that are highly inflammatory it is possible that once the reaction to our own proteins or a normal bacteria in our system are established that they may continue with a very small amount of lyme bacteria present. This level of lyme disease would most likely be below that levels which laboratory could detect. It may even be that they continue with no lyme bacteria present.
Even if it could be assured that all lyme bacteria were killed by some therapy, is also possible that the reactions to our own proteins may continue even if there is no bacteria present any longer. This could be why post-treatment Lyme disease syndrome (PTLDS) or post Lyme disease syndrome (PLDS) or chronic lyme disease (CLD) has not been shown to respond to long term antibiotic therapy. It is possible that the antibiotic approach to chronic lyme symptoms is not effective because the bacteria are not longer present or in a form that is resistant to antibiotics.
This is not to say that there are not various therapies that can improve and manage lyme disease. There are many herbs, homeopathic medicines, vitamins, amino acids and diets that help. There are approaches that include exotic enzymes to break up biofilms, and herbs from various rainforests to theoretically kill the lyme bacteria. In addition there are many fancy and complicated tests to tell you if you do or don’t have the lyme bacteria. These tests don’t test for the perhaps hundreds of other bacteria that can cause lyme’s like symptoms.
For many people this kind of management becomes a second job that means that they have to adjust their life style in a way that limits both their freedom and their enjoyment of life. If your approach to treating a condition limits someone’s life it is a compromise, not a cure. A cure means that a person has freedom. Including the freedom not to constantly be treating their condition.
To cure lyme disease we have to return to the question, why are people with lyme symptoms over reacting to a bacteria that seems to have been with human beings since the beginning of human beings. In other words, what has changed that the lyme bacteria is now such a threat to our health? Are we more exposed to tick bites then our farming, hunting and gathering ancestors? It is very unlikely that this is the case. So our ancestors were exposed to as many if not more of the same bacteria. Yet they did not fall apart or spend days in bed. Those people that would have been so poorly affected by these bacteria would have been bitten as kids and probably would not have survived to have their own kids.
Maybe it is not about the bacteria, maybe it is about us. What is missing from our system? What are we lacking that our ancestors had? One emerging theory is that the item our immune system is lacking is the presence of intestinal parasites. Every human up to the last hundred years has had intestinal parasites. When we examine ancient stool all of it shows the presence of intestinal parasites. These organisms are a part of the normal human ecosystem. One of these worms seems especially good at regulating the immune system.
Over the last several years researchers have been using one worm in particular with good results. In 2015 an australian researcher wrote an article about patients that he had intentionally infected with hookworms. These are patients with the severe allergy to wheat and gluten called celiac disease. One way to think of celiac is as a very bad allergy.
What the research showed was that after a few months on the worms they were able to start eat gluten without side effects. It is not completely understood how the worms create this effect. The worms seem to have a couple of effects, they make the mucus layer of our guts thicker so we have more protection from foods, they change the bacteria in the intestine, they encourage the bacteria that provide a good environment for them, and they decrease the bacteria that create a bad inflammatory environment for them. Additionally what happens is that the worms, when they get established, have the ability to create a lot of chemical signals in our body that control inflammation.
The worms don’t want to be in a stressful environment, so they calm down the intestine. By releasing these calming chemicals they can decrease inflammation in other parts of the body also. So the worms can work like a natural steroid. The worms can look like the steroids that treat lyme symptoms but do so in such a delicate a manner that we don’t see the side effects we would see if we gave steroids as drugs. It is something to note that the shape of gluten looks a lot like the lyme bacteria.
If hookworms have good effects on inflammation what are the side effects? The reasons hookworms are used in that they have some advantages over other parasites. They can’t reproduce in your body and you can’t transmit them to other people. They are applied topically to the skin and then within a few days they find their way to the intestine. At about the six week mark a patient may get some digestive upset as the worms start sending out decoys to trick our immune system.
So it has become clear to me after years of doing this that you don’t want an immune system that functions as a two legged stool that tips over with the slightest push. You need to have worms as part of your ecosystem to get stability and become a three legged stool. In this case the worms function as a parabiotic, a parasitic probiotic. The stability provided by the worms means that cases don’t go spinning out of control. People might get unbalanced and have some symptoms, but they don’t get the huge aggravations of their conditions.
Another aspect to the presence of hookworm in the small intestine is that the intestinal bacteria gets a new boss. Without the worms the bacteria in the intestine can have it’s own way with ecosystem of the intestine. Once the worms come in it means there is a new supervisor on the job. Because the hookworm is an animal and not a bacteria it has much more power over the bacteria that are in our small intestine and even of the bacteria in our large intestine also. The worms can decide that it likes one species of bacteria better than other. In bringing in worms we are bringing in a new foreman to the construction site, and experience person that knows how to organize the job.
Given that the concept of apply therapeutic worms is a relatively new concept it make sense this would not be the first line of defense to lymes. There are many cases that will respond well to the homeopathic lyme nosodes, or herbal medicines, or some vitamin therapy. Some people when finding out their food allergen may find out that they would rather just avoid that food. All of these are fine approaches. Sometimes they will work for patients that do not have much an inflammatory or autoimmune history.
For other patients the activation of an immune response to a microbe in their system that sets off an immune reaction. It could be a reaction the the lyme bacteria, or it could be reaction on another known or unknown bacteria. We have talked about lyme but the same points can be made about the mononucleosis virus that causes the symptoms or chronic mono or chronic fatigue syndrome. In any case the management of their immune system takes over more and more of their life. Before they know it they are the person that can’t eat a normal menu, can’t be around pets, needs another nap before going out with friends. The issue comes down to the person’s own hyperactive immune system.
Therapeutic hookworms offer the possibility of an immune system that is stabilized. This “parabiotic” is used in much the same way, and should be viewed in a the same way as we now view probiotics. Most people today are not resistant to taking lactobacillus acidophilus to balance out their digestive tracts. The idea of using bacteria to treat illness at the start of the probiotic age was the same as our discussion now about using parasites not as probiotics, but as parabiotic.
Researchers are not able to take pictures and count every worm in a person that has hookworms. Some interesting information has been revealed. It seems like people have a set number of hookworms that they tolerate. One volunteer with 12 hookworms was given a new dose of 50 hookworms. As they took pictures and watched over the course of a few months the hookworm population of hookworms increase, and then decrease.
The volunteer ended up with the same twelve hookworms as before the introduction of the dose of fifty. So it seems that the immune system can get rid of hookworms, but it chooses not to with the twelve. Either that is the case or the 12 hookworms are sending a unique signal to the immune system that 50 hookworms can’t send. A fellow volunteer was found to have the same situation with a slightly different number of worms to start.
Some people will express a concern that the hookworms could somehow live in a different part of their body. There is no evidence that hookworms can live outside of their final home, the small intestine. Another thing that hookworms can not do is reproduce in the body. So if a person receives 10 hookworms that is the maximum they will have until more are introduced. They require part of their life cycle in the soil, so they can not be transferred to other people. They are easily killed with the drug abendazole.
Many old time doctors will talk about how natural medicines and even conventional ones used to be more effective. One thing to recognize about the effectiveness of homeopathy originally and of herbal medicine originally is that they were being used on people that had the immunological benefits of worms of some type.
To treat lyme what works is steroids according to the studies. Antibiotics don’t work for chronic lyme according to the most recent research. Lyme in highly inflammatory patients is a very difficult condition to treat, or post lyme exposure syndrome. Worms seems to have the effect that they function as side-effect free micro doses of steroids. This immunoregulation stops the over reaction to the lyme bacteria.
More than anything, worms answer the question of what can be done to enhance health in someone that has become chronically ill. Not only what can be done, but what can be done within reason for the patient and family. Of course we work to avoid drugs because we work to avoid long term side effects. However we also work to avoid difficult diets that may be difficult or impossible to implement with children, especially autistic children. Or can be difficult for someone without the time, patience or money to apply to highly specialized diets.
I will never forget the patient with an autistic son that came in one time. He had taken his son for a walk in woods and the boy had gotten chiggers on his leg. Chiggers are basically like fleas that burrow into your skin and itch. The body responds to them with a lot of inflammation. In addition to the rash and itching from the chiggers the boys autistic symptoms for mostly cured while the itching was going on in his legs. When the reaction from the chiggers was over the boy wen back to being autistic. I never forgot this lesson and always tried to figure out a way to add this information my own treatment of patients.
It was on learning about hookworms that I realized that we might have found the organism that would mimic the chiggers that I needed to help get the same effect as that autistic boy had gotten. This patient needed a chiggers effect without all of the itching. Our bodies are expecting to push against some resistance from an immune perspective. When you remove worms from the equation you remove the resistance. We have a part of our immune system that is missing, and that part is called worms. It is as if one of the parts has been removed from our immune system, the part that calms the system down. For some people an immune system without worms is like a car with no brakes. Once an immune system like this is activated it just races out of control.
This pattern of the immune system racing out of control is seen by many patients that have inflammatory disease. Arthritis, colitis, crohns, multiple sclerosis, and yes even chronic lyme disease. In this case the patient with post lyme allergic syndrome took matters into her own hands and acquired hookworms. She then came in and asked if I would observe and help managed and advise her in her use of hookworms to the best of my ability. I was happy to do this as I knew at a minimum I would learn something new. What I saw in her was a rapid, consistent improvement over a few months to the point where the patient described herself as cured. As I do talk about the topic sometimes, I do have people that reach out for advice and through them I have heard similar reports.
This very difficult lyme case has been living with ten hookworms now for over two years. The case has continued to improve to the point where the patient feels improvement even after two years. The patient not feels better than even before infecting herself with hookworms. Including symptoms that existed prior to the initial lyme infection. These included some joint problems, and hormonal problems and some sleep problems, and various food allergies and sensitivities that have been resolved directly as a result of her hookworm use.
My real passion for the subject is that thinking about the body and it’s reaction to the environment is a paradigm shift for me that opens up other ways of thinking about difficult cases. And that is what I am looking for as a way to get better at what I do. This paradigm shift can be applied to many other immune and autoimmune diseases, including chronic fatigue and chronic epstein barr as well as arthritis, colitis, and crohns disease. I look forward to talking about the genomics of this paradigm shift and getting some interesting questions at the October NYANP conference.
*Steve Nenninger, NMD has a private practice in Port Jefferson, NY. CLICK HERE for more information about Dr. Nenninger, his work, or to set up an appointment.