LymeDisease.org releases “Top 10 Lyme Disease Research Questions,” as federal government weighs options in fight against growing epidemic.
LymeDisease.org releases “Top 10 Lyme Disease Research Questions,” as federal government weighs options in fight against growing epidemic.
https://articles.mercola.com/sites/articles/archive/2017/12/11/poop-pills-can-combat-clostridium-difficile.aspx? by Dr. Mercola, December 11, 2017
While it would seem that a fecal transplant in capsule form would be a somewhat bitter pill to swallow, scientists conducting a randomized clinical trial1 found this mode of transportation, in a matter of speaking, for fecal therapy was easier and just as effective for treating patients infected with the serious and dreaded Clostridium difficile infection (RCDI), or simply “C. diff.,” as receiving a fecal transplant via enema or colonoscopy, also known as fecal microbiota transplantation (FMT).
Further, FMT in pill form has the capacity to improve patients’ quality of life, as it caused fewer adverse events.2 For those who may be unaware of this protocol, fecal transplants are now not just common, but according to one study, so successful that the first trial was stopped early because the researchers deemed it unethical to withhold the treatment from patients (as some typically are given alternative therapies). As noted by NPR:
“That’s because C. diff. is kind of a special case. It’s a very invasive microbe that has repeatedly been assaulted by antibiotics which have caused a collapse in other microbes. So it’s an easy environment for microbes in a donor stool to invade.”3
One of the problems with C. difficile is that it’s one of the most common health care-associated infections and one of the foremost reasons hospital patients develop debilitating, recurrent diarrhea that’s hard to get a handle on, medically. It’s especially rampant among older individuals on antibiotics for other conditions. CIDRAP states:
“(C. diff.) can also be difficult to completely cure. As a result, recurrent infections have become a growing challenge. At least 20 percent of patients who get an initial CDI have a recurrent infection within eight weeks, with the risk of RCDI being as high as 50 percent to 60 percent after three or more infections.”4
Researchers at Brown University, where one program focuses on digestive microbes such as bacteria, fungi and viruses (human microbiomes), say C. diff. became hard to manage when antibiotics prescribed for other conditions disturbed what may have been perfectly functioning, benign gut organisms. By no means a trifling infection, Newsweek pulls no punches as it calls C. diff. both “nasty” and “deadly.”
Antibiotics may be the usual treatment in hospitals, but they only contribute to the problem by effectively wiping out beneficial bacteria in patients’ collective microbiome that might keep C. diff. in check, CIDRAP observes. In essence, FMT can be explained as feces being transferred from one healthy donor to the gastrointestinal tract of a C. diff. infected patient. The purpose is to “reintroduce healthy bacteria into the gut (as) a non-antibiotic therapy that’s shown promise in clinical studies.”5
C. diff. infection impacts half a million people in the U.S. every year. Further, it’s fatal for 15,000 of them, also every year, according to the Centers for Disease Control and Prevention (CDC).6 Still, there have been patients who found the prospect of fecal transplant therapy, even through surgical means, to be just too daunting. In fact, efforts have actually been made to extract the beneficial bacteria from the fecal matter to make the idea of swallowing it more palatable, but the effort failed.
Far from being a brand-new, innovative idea, using poop to fight the effects of C. diff. and other problems in patients has been around since at least the late 1950s. Different names, besides FMT, have included fecal biotherapy and fecal flora reconstitution. One study explains the science behind it:
“FMT involves reconstituting the normal intestinal microflora in a diseased person by infusion (via nasogastric tube, enema or colonoscopy) of a liquid suspension of stool from a healthy donor. The first report of the use of FMT (for a patient with non-CDI pseudomembranous colitis) was published in 1958. Since then, there has been mounting evidence supporting its use in recurrent CDI.”7
How your microbiome works is still being scrutinized by scientists, especially in the way it can make or break your overall health. It’s clear that certain foods are considered positive for “feeding” your microbiome. Foods containing fiber are at the top of the list as they release nutrients for your gut lining. The connection between what you eat and how healthy your gut is are closely interconnected, so consider adding more fiber, especially if you aren’t getting the 50 grams of fiber per 1,000 calories you eat that I recommend.
One way fiber benefits your health is by providing beneficial bacteria in your gut with the materials needed to thrive. These beneficial bacteriaassist with digestion and absorption of your food, and play a significant role in your immune function.
One of the best ways to regain optimal balance in your gut is by eating fermented foods. Besides kimchi and other fermented vegetables, which you can make at home very easily, there are also fermented beverages such as kefir and yogurt, all providing trillions of beneficial bacteria — far more than you can get from a probiotics supplement.
It’s been a tough call for scientists and physicians alike, trying to determine which is worse: C. diff., antibiotics, colonoscopies (the most successful in terms of introducing fecal matter into patients) or the new poop pill-popping protocol. C. diff. being what it is comes with serious, life-altering symptoms, which Medline Plus8 says can include:
|Watery diarrhea multiple times daily||Stomach cramps||Fever|
|Dehydration||Nausea||Abdominal pain and tenderness|
A colonoscopy is an example of an invasive procedure, but there’s also the fact that patients typically undergo mild sedation, which introduces another risk because their breathing may become too slow. Further, there’s the chance that in the course of the procedure, the patient’s intestinal wall could be punctured, which could introduce life-threatening infections. Time observed:
“The benefits of swallowing a capsule are also undeniable compared to swallowing — or trying to swallow — a feeding tube through which a slurry of fecal matter is flowing through. (That’s the way that doctors testing fecal transplants originally administered their doses.) That carries the risk of aspirating some of the fecal slurry into the lungs — not to mention the unpleasantness of introducing feces to the mouth area and accidentally breathing it in.”9
Dina Kao, a gastroenterologist at the University of Alberta in Canada, used the pills described by Time10 as “fecal matter manufactured into a capsule” for 116 patients in the trial. Compared to a colonoscopy, both methods showed a 90 percent reduction in C. diff. relapses. All 116 study subjects had suffered a minimum of three bouts of C. diff. and were randomly assigned a poop swap via either the capsule or colonoscopy.
It must have been an exercise in “mind over matter” for the patients who were required to swallow down 40 capsules in one sitting, which took an average of a half-hour to an hour. The reduction in C. diff. relapse was determined after 90 percent of the patients remained C. diff.-free after 12 weeks. Preeti Malani, professor of medicine at the University of Michigan, who wrote an editorial to go with the study, noted:
“Based on this study, I think it would be very reasonable to think about fecal transplant capsules as your preferred approach. If it were myself or a family member, I think avoiding colonoscopy would be helpful.”
Still, Melani and other researchers believe more studies are needed, not only to confirm the results found in Kao’s study, but also to get a better understanding of how fecal transplant works.
Kao herself says she plans to study all the components of fecal transplants to get a clearer picture of what exactly helps control C. diff. Besides C. diff., microbe transplanting via a capsule is also a therapy currently used for obesity, diabetes, colitis and Crohn’s disease. It’s a way gut bacteria can be positively linked to lowering the risks of such disorders and conditions as obesity, allergies, asthma and even some mental illnesses.
While fecal transplantation may at first glance come across as quackery of the highest degree, once you understand the process, it’s clear it’s a successful way to swap bad bacteria for good.
Kao, whose first reaction upon the successful trial, quipped, “It’s absolutely insane. We just don’t see (this) kind of efficacy with drugs,”11 added that she believes the favorable outcome of the fecal transplant pills will “transform” the way conventional medicine at large thinks about the unconventional therapy. She listed several of the benefits over the current protocols of antibiotics or surgery. Poop pills are:
As it stands, the Food and Drug Administration (FDA) hasn’t yet given the proverbial green light to fecal transplants.It does, however, permit doctors to perform the therapy for patients not currently responding favorably to other forms of remediation, but only as long as patients understand that the poop pill is still being scrutinized as a viable treatment.
In addition, CIDRAP notes that in March 2016, the FDA proposed regulations that would further restrict use of FMT by requiring that either the patient recipient or the treating clinician personally know the donor — a restriction that, as yet, is not finalized.
Interestingly, among patients who’ve been asked what they thought of the idea of swallowing poop pills, most responded that after all was said and done, it wasn’t too bad. Newsweek observes that two-thirds of the 57 patients who got the pills described the experience as “not at all unpleasant,” while 44 percent of the 59 patients who underwent FMT via a colonoscopy were not as positive.
Perhaps when the patients remembered the alternative — that to them, poop pills were a hero of sorts due to their ability to stop the unstoppable on the other end — the therapy could only be seen in a positive light. As Kao concluded, “We still don’t understand what’s going on, and in these other conditions it’s not as clear-cut that the disturbance in the bacterial composition is the cause. Stool is such a complex mixture.”12
Lyme/MSIDS patients use antimicrobials and have to be concerned with gut health. In fact, antibiotic resistance and adverse events are often cited by some physicians as to why they shouldn’t be used or only in extremely limited amounts. FMT is a clear and concise answer for this potential problem, and I pray people are taking note.
Any treatment demands a risk/benefit assessment and until the denialists understand the severity/complexity of Lyme/MSIDS, patients will be swimming against the current and having to fight for proper/effective treatment which is much more than 21 days of doxy. Doxy, for instance, will not touch numerous coinfections and has been found to throw the spirochete into the non-cell wall form to rear its ugly head later. https://madisonarealymesupportgroup.com/2017/11/03/lyme-bug-stronger-than-antibiotics-in-animals-and-test-tubes-now-study-people/
Summary: This article will profile a new Lyme treatment, and one of the world’s leading physicians using the therapy. I’ve personally been treated by Dr. Mary Ellen Shannon, and I highly recommend her. You can contact her through her clinic, Center for New Medicine (Irvine, CA). She is an LLMD (Lyme Literate Medical Doctor).
When I wrote my first Lyme disease book, Lyme Disease and Rife Machines, I discussed the benefits of ozone therapy. Ozone therapy is incredible for many reasons. Until now, however, I believe that ozone therapy has been limited because there are no superb ways to get enough ozone into the body.
Don’t get me wrong – many of the ways in which ozone has been administered for the past several decades are good. They do work, and are useful. But they haven’t been life-changing or ground-breaking for many patients.
That is, until now. A new method of administering ozone, called “ozone ten pass”, has been a game-changer for many Lyme disease patients. Let me explain what this is.
Before ozone ten pass, the most powerful method of ozone administration was called MAH, which stands for Major Autohemotherapy. In simple terms, this is a procedure where a small amount of a patient’s blood is taken out of his or her body, and exposed to ozone, and then returned to the body. This practice has been performed for decades, especially in Russia and other countries where innovation is common in ozone therapy.
MAH has helped many Lyme patients, no doubt. But still, it wasn’t really game-changing for the vast majority.
This is why ozone ten pass is so exciting. A very smart researcher and leader in the field of ozone, Dr. Johann Lahodney, developed ozone ten pass as a way to get more ozone into the body. Essentially, ozone ten pass involves doing ten MAH treatments – all in one sitting! Blood is taken out, ozonated, and put back in the body, ten times, in about an hour.
Several years ago, ozone ten pass was new, and wasn’t widely available. However, as it has become more evident that it can be game-changing for not just Lyme disease but also many other conditions, more and more American physicians have begun to incorporate it into their practices. So it is a very good time to look into ozone ten pass, because it is much more available than it has ever been before. And furthermore, the training that doctors receive is more advanced than ever.
One unique characteristic of ozone ten pass is that each subsequent pass in the treatment can help to neutralize toxins and clean up the mess left by previous passes. And this all happens in one sitting – one treatment. This doesn’t mean that patients don’t herx with ten pass – some of them do. But, the ten pass process introduces some new and intriguing variables and benefits compared to MAH alone. (Disclaimer: Don’t forget to work closely with your doctor to determine if you should start at a full ten passes, or start at a lower amount – the treatment is very powerful and should be treated with great respect).
After researching ozone ten pass for Lyme disease, I’ve come to the conclusion that it is a BIG step forward in Lyme disease treatment. In fact, I personally have traveled to see Dr. Shannon twice. As I write this, I am in Oceanside, CA, where I am having consultation with her.
Some Lyme disease patients report having dramatic results after their first few treatments (remember, each “treatment” consists of up to ten “passes” of ozone. So when I say “one treatment,” I mean one full ten pass). More and more anecdotal evidence is popping up all over the internet.
One physician has an entire YouTube channel devoted to testimonials of patients using ozone. Many of these patients are Lyme disease patients. I enjoyed watching his videos and hearing the many stories as I made my own preparations to undergo ozone therapy with Dr. Shannon.
Also, I suggest you do a google search for “ozone ten pass Lyme disease” and read about many of the people who’ve been using this treatment. There are YouTube videos, blogs, Facebook groups, and other resources available.
Of course, ozone ten pass does require a doctor to perform, so you’ll need to find a doctor offering ozone ten pass, or travel to go see one like I did.
Which brings me to the doctor who I am profiling in this article: Dr. Mary Ellen Shannon, MD, of the Center for New Medicine, in Irvine, CA. Dr. Shannon has more experience administering this therapy than almost any other physician in the United States. In fact, she has administered this therapy on herself dozens of times, to cure herself of a serious life-threatening illness. I highly recommend watching her present on ozone and tell her story here. Even while ozone ten pass was new, and many physicians were very inexperienced, Dr. Shannon was using the therapy on herself daily, to regain her health. Hence, her experience, competency, and wisdom far surpass any other ozone doctor I’ve met or even heard of, with the exception of the inventor himself.
If you are considering ozone ten pass, I highly recommend Dr. Shannon, and as mentioned, I personally received treatment from her. I screened a half dozen ozone doctors and chose her because of her extensive experience and personal journey with ozone. Her clinic is equipped with near-endless state-of-the-art advanced, integrative treatment tools (Dr. Shannon jokes that her clinic is the “Disneyland” of alternative medicine!). She is also a very warm, caring, empathetic individual, and she thinks outside the box in addressing Lyme and related conditions. She has extensive experience treating many neuro-degenerative conditions, as well as cancer. Every time I see her, she is telling me about a new cutting edge Lyme disease therapy she is using in her clinic. Likewise, she is very open-minded and willing to hear you out on whatever you have to say about your own unique healing challenges and any new treatments you are considering. As an ozone doctor and an LLMD, she is fantastic.
Though it may be difficult for some people to travel all the way to Southern California to see her, I found that my own journey to this doctor was highly worthwhile. I’ve also found that ozone ten pass has played a huge role in my ongoing recovery.
Feel free to leave a comment below with thoughts or questions. You can contact Dr. Shannon at 949.680.1880 or through the clinic website.
I’ve personally used MAH (where a pint of blood is taken out and infused with ozone) weekly for two and a half months as well as having the oxygenated blood run through infared light. To be honest, for the money and time it takes I wasn’t impressed. Antibiotics did far more for me for much less money; however, I knew about this ten-pass approach and begged my LLMD to do it as German doctors are using this approach for cancer with good success. I truly feel it’s dose dependent. For those of you in CA, this may be a game-changer for you. Let me know how you progress. The beauty of it is it will deal with ALL infections – including viruses.
https://www.lymedisease.org/touchedbylyme-cdc-lipstick-on-pig/ Touched by Lyme
by Dorothy Kupcha Leland, DEC 2017
Thanks to Lyme advocates on Facebook this morning for pointing out that the CDC Lyme pages were updated on Dec.1, 2017, with a number of notable changes.
For instance, the agency has REMOVED the link to the Infectious Diseases Society of America’s 2006 Lyme guidelines from its Lyme treatment page. Other references to those guidelines have apparently been disappeared from throughout the website as well.
For anyone new to this issue, the IDSA guidelines have long been like a sharp poke in the eye to the Lyme community. The guidelines define Lyme so narrowly that many people are denied a diagnosis in the first place. If you do manage to get diagnosed under their restrictive criteria, the guidelines allow only very brief treatment.
Insurance companies love the IDSA Lyme guidelines, because they can avoid paying for longer treatment for people with Lyme disease. People suffering with Lyme disease hate them, because the guidelines make it difficult, if not impossible, to get the treatment they need to get well.
So, having the CDC finally remove this link from its website is…interesting.
Here’s a screen shot of the CDC’s Lyme treatment page from Nov. 1, 2017. You can see that odious link in the middle there, shining bright as day.
And here’s what the page looks like this morning (Dec. 2, 2017):
Does this represent a change of heart by the CDC regarding Lyme treatment? Probably not. If you look at the current page, the recommendations for early treatment are in line with IDSA guidelines, without naming them.
And you’ll notice that for information about “chronic Lyme disease” and long-term treatment, the CDC page kicks you to the National Institutes of Health website. If you follow the link, you’ll find the same-old, same-old tripe about how long-term treatment doesn’t help, etc. (Based on three statistically puny studies of “chronic Lyme” the NIH funded years ago.)
Perhaps the CDC is trying to make its ties to the IDSA less glaringly obvious.
What’s the old phrase about putting lipstick on a pig? Still a pig.
In a separate but related development: The primary architect of the 2006 IDSA Lyme guidelines, Dr. Gary Wormser, was recently named to the new federal Tick-Borne Diseases Working Group. LymeDisease.org is protesting his appointment, based on his flagrant financial conflicts of interest with lab companies and other commercial enterprises.
Click here to read more about this issue & sign the petition: https://www.change.org/p/dr-richard-wolitski-remove-wormser-from-federal-tbd-working-group-due-to-financial-conflicts-of-interest
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at firstname.lastname@example.org
Written by Huib Kraaijeveld (On Lyme Foundation)
Dr. Jack Lambert is a Scottish doctor who is currently working as an Infectious Diseases consultant in a public hospital in Dublin, Ireland. He has started treating Lyme Borreliosis patients 20 years ago in the USA and during the last 5 years in Ireland. He has also successfully treated a number of young women who fell ill after their HPV vaccination, which seems to have stimulated a latent Lyme infection to reactivate. In this exclusive interview in two parts, Dr. Lambert shares his experience with different emerging serious conditions caused by complex infections and looks at similarities and differences as to how they present clinically and are treated.
Dr. Lambert: I am a Infectious Diseases (ID) specialist that is managing a wide range of different infectious diseases, in parallel with being an academic doctor, research and teaching at the Medical School. In my 25 years career I have seen many different infections in immuno-compromised hosts, like HIV Hepatitis C and those immunocompromised by cancer treatment and transplant recipients. Many of the textbooks describing these infections were written by my former mentors and bosses; some of whom were nominees for the Nobel prize in Medicine.
In the last couple of years, it has become very clear to me that there are many similarities between HIV, Hepatitis C, transplant medicine and the many complications that patients with Lyme and co-infections live with.
Billions are invested annually into HIV research, billions are put into transplant medicine, but for some reason little money is spent on researching Lyme and co-infections for example Anaplasma, Babesia and Bartonella. Yet these infections can be just as damaging and debilitating as HIV and Hepatitis used to be, before we found medicines to treat these conditions.
My early experience with difficult diagnoses with imperfect techniques was when I was training in Rochester, New York, in adult and paediatric medicine training programme. By default I ended up taking care of the HIV infected pregnant women as well, as few were willing to take care of them in this time period. So I also took care of a lot of seropositive mothers, who had delivered their babies prematurely.
My first presentation on this subject was about seronegative babies who were born to HIV seropositive Afro-American mothers, which were initially put in the premature nursery but died at home after being released from the hospital. They were dying from what was believed to be SIDS or cot death. When I saw the pathology reports on these children and cultivated the HIV virus from their blood in my laboratory from post mortem blood samples, I discovered that they had died of HIV and their blood cultivated positive for the HIV virus. Yet in none of these children had the ‘standard’ HIV antibody tests showed up positive. If one looked at the clinical signs however, they were all the same as of the ones of children who were HIV seropositive.
The main question of my paper was that HIV and AIDS was masquerading as SIDS. We thought it was SIDS, because it looked like it and nobody had another diagnosis. But looking back, these children were premature, they had had blood and exchange transfusions, they were severely so immuno-compromised that they had no antibodies, and we did not have the technology that we have now to culture the HIV virus.
So I learned the lesson very quickly: a positive test is helpful, but if you have a child coming from a high-risk group, who has all the signs and clinical manifestations of HIV and AIDS, while the antibody test is negative, the conclusion is not ‘oh, they don’t have HIV and AIDS”. The proper conclusion is “we don’t have the optimal test”.
With Lyme and co-infections I see the same thing. If you have a positive test and you have consistent clinical manifestations of the disease, that combination gives you an answer – but basically it is just using common sense. It is the work of a clinician to put the pieces of the puzzle together.
Did somebody have a tick-bite, who is sick with a Lyme-like illness – either acutely or chronically – and the test is negative? Then you should pursue the clinical manifestations and look for alternative testing. Or treat them; even if the testing is negative. We do this for most other infectious diseases, use clinical diagnosis, when testing is ‘imperfect’ or when not available. And when patients get better with our treatment, we say we have had a ‘therapeutic success’.
I work fulltime in a public hospital clinic in Dublin, but I also have the opportunity to see patients privately, often those who don’t want to go into public care for privacy reasons, or for convenience and flexibility. I treat many highly functioning people, both from Ireland and abroad, who want confidential treatment or who want an alternative opinion as they are unhappy with the current opinion give by other doctors.
These patients come in for different reasons, travel medicine, HIV, other STI infections, but over the last several years I have seen a sharp rise of the number of Lyme patients, especially those with ‘chronic Lyme’. Because of my experience in America, I have been identified as probably the only Infectious Disease doctor in Ireland who was willing to see patients with symptoms that were suspicious for Lyme – despite the fact that many of the antibody tests were negative. These patients had not been willing to accept the ‘atypical’ and unknown diagnoses being given to them by other specialists.
So I went through the same awakening with these patients as I did early on with these children who were dying of HIV AIDS. If you see all these patients who have a negative test, who had an obvious tick bite, who were previously well, or went off travelling, developed a fever, came back sick and were still sick 12 months later with disseminated clinical manifestations in the joints, neurology, etc, etc – then you need to take their history seriously, and investigate and treat them properly.
Many of my patients had looked for other Lyme tests, which they had to pay for themselves. Often when their standard (serological) Lyme test was read as ‘false positive’, still the pieces of the puzzle were easily put together, when I took their history. They were previously healthy, went traveling to Lyme endemic areas, came back and fell ill with consistent clinical manifestations of Lyme. Many had short term treatment and had gotten temporarily better and then their symptoms had returned.
They may have had neurological or rheumatoid symptoms, and often had been seen by neurology or rheumatology specialists and were given what I call ‘garbage bag’ diagnoses: Fibromyalgia, chronic fatigue (ME), chronic pain syndrome (CRPS) or atypical neurological diagnoses such as “a-typical MS”, “a-typical Parkinson”, “a-typical ALS”. So it was very clear that these neurologists and rheumatologists didn’t know what caused their symptoms, and indeed most of the treatments given to them had not helped them, and in many cases made them worse.
Immunologists and hematologists saw many of these patients who also had low white cell counts and were working them up for cancers, lymphomas or similar disorders. But it simply took a look at the history: these patients were previously well, had a sudden onset of illness, were coming from a Lyme endemic area, they had low white cell counts and they had fevers and sweats. It wasn’t only low white cell counts; they had manifestations of multisystem disease. Some of the more forward thinking hematology specialists then referred these patients onwards, as up until then no one had entertained an infectious etiology.
Lyme and co-infections are not on the ‘radar screen’ of most specialists in Ireland, and they are not aware of the complexities of the diagnostic issues. They follow the IDSA mantra that a negative test means you don’t have it. So on top of my standard clinical public hospital practice, this is what I have started doing over the last five years with some 500 patients who have been treated. Unfortunately I have become too busy to keep accurate statistics on these patients, but in about 70 percent of the people, who follow my treatment regime, there is recovery. Either fully or they improve so much that they can get their lives back.
The Irish governments only reports a few dozen cases over the last years. On their surveillance website, they only keep track of ‘neuroborreliosis’, so you have to end up in the hospital with a lumbar puncture to be counted. So what about all those with a bite or a non specific manifestation, who does not end up in the hospital? They don’t count? I would say that many additional cases are been missed. We have imperfect surveillance of the incidence of Lyme in Ireland. We don’t keep records of patients with these conditions, so it is easy to say there is no Lyme in Ireland. And its not all about Lyme; there are other infections you can get from a tick, the co-infections; not on anyone’s radar screen it seems.
This may be a reason why my colleagues don’t know about Lyme, but it’s quite surprising to me. I don’t really know why my colleagues quote the national government statistics, when they know they are not accurate. In contrast there are the Sexually Transmitted Infections (STI’s). Everybody is aware that the statistics about STI’s are also not well documented and recorded in Ireland, but we all know there is sex in Ireland and people get STI’s. And we know there are a lot more cases of herpes and genital warts, as the under reporting of these conditions is well accepted. My colleagues accept these statistics, those of STI’s , but do not use the same thought process when it comes to Lyme.
We have Lyme endemic areas in Ireland, where ticks are found in large numbers and people pick the ticks off their bodies and their pets bodies in the summertime. But still, the government and our doctors don’t believe these conditions exists in any significant fashion. Vets seem more aware and keyed into this issue in Ireland than the medical doctors. There seems to be a “Lyme denial” in this country, as there is in many other countries, including those within the EU.
IDSA & ILADS
After my qualification as an Infectious Diseases specialist in America in 1991, I became a member of the IDSA. Although I’ve never been active politically, I personally know many of the doctors in IDSA leadership positions. Many of my old bosses are past presidents and committee members of the IDSA.
Before moving to Ireland I never paid much attention to ILADS, because I never found the need to look for more information on this disease. There is a huge body of knowledge on these other infectious diseases that is coming out of the IDSA and I found it very helpful. The IDSA had provided me with the accurate and up-to-date knowledge on other severe infectious diseases, such as HIV, Hepatitis and Tuberculosis, so I assumed they would also provide that same quality of information about Lyme and co-infections. However, further inspection of their documents on Lyme and co-infections find a very selective choice of studies, and not a comprehensive view of the subject.
I would even say that when it comes to Lyme and co-infections, there is just a very limited – I would say “censored” – kind of opinion. I don’t even think there is a broad understanding of Infectious Diseases doctors on the literature about Lyme and co-infections. So I found out I actually had to also become member of ILADS, because they have made an effort to really study these tick borne diseases more intensively and look at the scientific literature on the subject to support their claims that a. antibody testing is imperfect (which we all know is the case) and that b. the current recommended treatments by the IDSA are too limited and fail many patients.
Very few IDSA members have the experience of treating Lyme patients in the same numbers and often with the same complexity when compared to ILADS members. So I’ve found it very helpful to learn from the ILADS doctors and to bring my knowledge up to speed and also learn about chronic Lyme. As a regular ID specialist in a public hospital you might see a few chronic Lyme patients a year. But if you are specialised in chronic Lyme, you may see hundreds or thousands of patients. You do learn from your patients, and the more you see of a certain patient group, the more you can understanding the commonalities that these patients present with.
Officially almost everybody follows the IDSA Guidelines, but increasingly many of my ID colleagues have started referring their patients, often at the insistence of the patients, when they see the treatment fails them or when they want a second opinion or another type of test. They are starting to understand that they may be missing a lot of infected patients, because of the rigidity in testing policies; and sometimes they reconsider their opinion when they see that patients are getting better because of longer antibiotic treatments and combination antibiotic treatments.
With an infection such as Lyme that one cannot culture in most clinical settings, meaning there is no ‘before and after’ measurement, clinical treatment results are the best indication of the infection being cured. If the symptoms return when you stop treatment, you probably need to treat a bit longer. However doctors are afraid to treat for longer for Lyme. If it is a prostatitis, there is no issue with treating longer, but if it is a life affecting condition. Doctors are afraid to treat longer, as the IDSA guidelines say 2 to 3 weeks.
And after that, it must be post infectious, even if the patient is not better. And does not get better until antibiotics are restarted and continued for a longer period of time. So who made this law that forbids doctors to treat for longer, especially when patients are getting better with the recommended treatment? Guidelines are suggestions for protocols to follow, and patients must be individually treated, as patient centred medicine is critical to all infectious diseases.
This paradox with Lyme is puzzling to me. Back in the days when we had HIV AIDS, in 1981 before we knew it was HIV AIDS as we didn’t have an antibody test until 1984 and we couldn’t culture the virus until 1987, when we saw that something was wrong with a patient, we stood up for them. We performed evaluations of gay men in New York and we knew they were immuno-compromised and that they were infected with all these opportunistic infections. We knew there had to be something we missed and we kept looking until we found it. It took a lot of hard work, science, resources and thinking ‘outside of the box’ to come up with the right diagnostics tests and later with medication which has changed the course of history with regards to HIV and AIDS.
We have done the same, put energy and initiative into the evaluation, understanding and ultimately optimal treatment for Syphilis, Tuberculosis, HIV AIDS and Hepatitis, among other diseases. Why we don’t do it for Lyme and co-infections, which are affecting an awful lot of people in a tragic way, is a mystery to me. The notion that many governments (e.g. Australia, Norway, France and many other European countries including the Netherlands) are suddenly repeating the 2016 publications by some IDSA doctors and CDC authors, is ridiculous. These guidelines are outdated and not evidence based in my opinion. We are sticking to the old traditional view even when the data and the patients in front of us do not fit into the ‘guidelines’.
Following the analogy of other spirochetal infections such as Syphilis, everybody knows that in the acute stage the blood tests are relatively reliable, but may be negative during the ‘window period. But in later stages the syphilis antibody titres go down and may often go negative. Why we don’t use such same wisdom with Lyme – another spirochete – puzzles me.
So how are these antibody tests supposed to perform optimally, when used in chronic patients who are immuno-compromised? We all know these infections go into the immune cells of the human body. They cause inflammatory and auto-immune responses, so there should be no surprise that these patients don’t have an optimal antibody response. We have imperfect technology, and to use a test that is not 100% sensitive in early infection, when the bacteria is circulating in the blood stream and in highest quantities. And then to say for chronic Lyme the same test must be used makes no sense. Just like with Syphilis and other infections, antibody titres decrease with treatment and also just decrease without treatment, so chronic Lyme sufferers suffer even further when standard antibody tests, never really validated in this population, are used.
If you look at major medical microbiology and infectious disease textbooks, they state that after 4 weeks you can’t find the Lyme bacteria anymore. Therefore Lyme is then categorised as ‘post infectious’. But I get back to the point I’ve made before: if you can’t culture it, you cannot know anything about its viability. You do not have a organism specific test (culture or PCR), that guides your ‘test of cure’. How do you say that a bacteria is killed, when you couldn’t grow and measure it in the first place?
All you have as a doctor managing the patient in the treatment partnership, is your patient’s response to treatment. If they say they are better on the treatment, you believe them. And make decisions accordingly. If they are not better, you have an option as a doctor: you can say to your patient, that their symptoms are post-infectious, to just ‘bite the bullet’ and give it time………
Or you can treat them for longer and see if they then improve.Many of such patients get better and get cured. To withhold treatment is this clinical scenario is fraught with significant problems, breaching a doctor’s responsibility to his patient and also basic human rights legislation.
We operate, as clinicians, in such a manner in all of our clinical career for other clinical conditions. I treat people with diabetic foot infections of the bone and I keep them on treatment for months – until their clinical symptoms are gone and their inflammatory markers go down. The textbooks don’t say how long to treat, or say treat for six weeks, at which time the infection should be eradicated. Then you wouldn’t say it’s ‘post-infectious’ after a few weeks, when the patient is still not better.
So why cant we manage with the same algorithm of ‘cure of infection’ with Lyme in parallel to the way we operate with other infectious diseases, is beyond me. Especially when we see patients getting better after treating longer than the guidelines say’ and that they relapse when the treatment is stopped too soon. Relapse with a diabetic foot infection is a treatment failure, not a post-infection or a “Post Treatment Syndrome”.
The guideline for Infectious Disease specialist is “continue treatment and make clinical assessment”. Of course we don’t want to treat people unnecessary, following antimicrobial stewardship guidelines. Yet we can treat acne with six months of antibiotics, but we cannot treat a severe infection like Lyme? Acne is just a cosmetic issue, while Lyme is a debilitating, life-changing disease.
In the absence of ideal diagnostic tools, when you think your patients may have the disease, treat them for a reasonable duration of time and assess and reassess the treatment response. One of the rules of infectious diseases medicine is that once you stop treatment and the patient stays better, they are cured. When they get worse, the infection has returned and they have relapse of infection and need repeat treatment. My ID colleagues live by that rule with most other infections, but not with Lyme.
Most of the Lyme patients I see have chronic Lyme, but I also try to see people with acute infections, which are often misdiagnosed as ringworm, a non-specific rash or as cellulitis.. I find that in cases of acute infection mostly a short course of antibiotics works well. For people who have been sick for 5, 10 or 20 years this short course treatment is not enough.
If their “a-typical” MS, Parkinson or ALS would have really been MS, Parkinson or ALS, they would not improve after treatment for a bacterial infection. Often these are young people, who are given diagnoses that rarely occur at a young age and who also responded negatively to their neurological medication. That is a red flag to me that someone is ‘missing the boat’.
Not every case of these diseases will be Lyme, but I am sure it is being missed a lot of the time. That is wrong to miss a treatable disease: MS is a life-long disease, ALS is a death sentence, while Lyme disease is a potentially curable disease that will never relapse again, when it’s appropriately treated. And patients can go back to a normal life with full function.
After we discovered the right test for HIV and proper treatment was developed, many scientists and doctors jumped on that bandwagon to move forward with the successes of the new treatments. But my interest started waning, as my interest is really in the early discovery and understanding of infectious diseases. So the first part of my career I focused on HIV as it was poorly understood and very few people were working in this arena. Around 2000 I moved into the field of Hepatitis C, because there was a huge portion in the world population suffering from it, while we did not have good drugs at that time and it affected a very vulnerable population. The severity and impact on a large population of the world was similar to HIV.
That is why, when I realised there was a very small burden of HIV in Ireland and a large burden of HCV disease, I focused on doing studies on Hepatitis C, and between 2008, where we conducted the first clinical trials with the new drugs for HCV, we now have easy cures, and the job is done. There are lots of people who want to jump on the bandwagon when the work is done, to get involved in the implementation science, and that is also very important.
But I think it was time for me to jump ‘off this bandwagon’ and look for a new poorly understood and challenging infectious disease area. What more challenging than Lyme? I initially became involved in HIV when nobody seemed to care about it, especially HIV in pregnant women. I was involved in Hepatitis C when there wasn’t a huge interest in it. So I saw Lyme as an opportunity or as a challenge. Because there are lots of unknowns, many people are severely disabled by it and I am in the position to contribute.
I work at a university, I publish, I teach at a medical school. In five years from now, when we have much better diagnostics tests for Lyme, better knowledge and treatments, there will be hundreds of doctors and scientists willing to take over the work, I hope. To me this is a really exciting time to get involved in this field, as so much good can occur if we just come together and quit the Lyme Wars. The side effect of such war is the patient suffering and being denied recognition of their disease and their symptoms.
The most exciting part is to see your patients get better! And to see them being validated that there is really something wrong with them, as they have so many rejections from the medical community. It’s just amazing; you have these patients who have seen multiple specialists with their very complex conditions. They have previously run marathons, and now can barely walk because of chronic pain and they are told that they are “seeking pain killers”. But actually they are in pain because they have an inflammation in their brain and inflammation in their joints, which is not being picked up on ‘standard testing’.
So all of a sudden these high performing people are considered to be crazy. Most are frustrated because their previously successful life in society is over and it’s hard for them to lie down and just give up, because nobody can figure out their problem. I say that if all the tests are negative and the patient is sick, the answer is not “there is nothing wrong with them”. The problem is we are not doing the right test or we have not yet developed the right test.
They get labeled wrongly, because the specialists and GP’s get tired of them. I love to see these patients, who weren’t willing to lay down and roll over. And to accept the opinion of their consultations. They are the ones who are thinking out of the box; and not the doctors that are supposed to take care of them. These patients come up with ideas and answers, seeking out people that would help them and many of them get better. As a result of this persistence and refusal to ‘throw in the towel’.
For me as a physician, most of these patients are very satisfying to work with. I have never seen such pro-activeness by such patients in any other disease area and it amazes me. They are stubbornly pursuing wellness against the negative opinions of the medical profession, who should really be accepting their condition and not writing them off.
That is the current paradox: we, the medical profession, often treat patients with suspected Lyme and Co-infections without dignity and respect, and discount their symptoms when they do not fit into our traditional ‘medical tick box’.
Please notice Lambert’s acknowledgement that the HPV vaccination has served to activate latent Lyme/MSIDS infections. This is why I keep pounding the vaccine issue.
Please know that vaccines are filled with ingredients that your body considers toxic.
Vaccines are contaminated with other pathogens: https://madisonarealymesupportgroup.com/2017/10/15/vaccines-and-retroviruses-a-whistleblower-reveals-what-the-government-is-hiding/
Vaccines have adjuvants which your body considers neurotoxic: https://madisonarealymesupportgroup.com/2017/09/21/aluminum-flawed-assumptions-fueling-autoimmune-disease-and-lyme/
Mercury (thimerosol) is another neurotoxin proving to cause severe side-effects: https://madisonarealymesupportgroup.com/2016/12/08/mercury-and-autism/
Mechanisms of vaccine injury: https://madisonarealymesupportgroup.com/2017/11/28/biological-mechanisms-of-vaccine-injury/
The Lyme vaccine is deadly: https://madisonarealymesupportgroup.com/2017/09/07/20268/
There are moral & ethical issues to consider with vaccines: https://madisonarealymesupportgroup.com/2017/04/06/video-how-vaccines-are-made/
For a review of numerous vaccines, go here and read my highlighted notes on Dr. Gentempo’s 9-part vaccine series: https://madisonarealymesupportgroup.com/2017/03/30/ty-bollinger-the-truth-about-vaccines-series/
The HPV vaccine is also deadly: https://madisonarealymesupportgroup.com/2017/10/02/sacrificial-virgins-hpv-vaccine/ (Other links at end of article on the deadly HPV vaccine)
https://madisonarealymesupportgroup.com/2017/07/02/hpv-after-vaccines/ Dr. Lapenta weighs in on the HPV vaccine: they protect against less than 50% of the cancerous types of HPV, they are made by mixing antigens of each type of HPV in a single solution, i.e., a biological bomb provoking death and irreparable health conditions, contains aluminum (a neurotoxin) is an adjuvant, and has caused severe side-effects such as CFS, POTS, and sudden death.
A link has also been connected between the HPV vaccine and Bartonella: https://madisonarealymesupportgroup.com/2016/04/24/gardasil-and-bartonella/
The first peer-reviewed study using vaccinated vs unvaccinated kids: https://madisonarealymesupportgroup.com/2017/05/18/first-peer-reviewed-study-of-vaccinated-vs-unvaccinated-children/ The study suggests that fully vaccinated children may be trading the prevention of certain acute illnesses (chicken pox, pertussis) for more chronic illnesses and neurodevelopmental disorders like ADHD and Autism. The scientists also found that children born prematurely, who were vaccinated, were 6.6 times more likely to have a neurodevelopmental disorder.
A short quiz to determine if you know facts about vaccines: https://madisonarealymesupportgroup.com/2017/11/06/vaccine-awareness-week/
Stanford clinicians helped develop the first clinical guidelines for treating pediatric acute-onset neuropsychiatric syndrome, a psychiatric problem linked to brain inflammation.
For the last five years, a group of clinicians at the Stanford School of Medicine and at Lucile Packard Children’s Hospital Stanford have focused on what happens when the immune system attacks a child’s brain.
In Pediatric Acute-Onset Neuropsychiatric Syndrome, which is believed to stem from brain inflammation after a triggering infection, children suddenly develop severe obsessive-compulsive symptoms and other behavioral problems. They urgently need medical and psychiatric help. Yet many pediatricians and mental health professionals still lack awareness of how to treat the disorder.
To fill the gap, a multidisciplinary team of experts from several universities has published the first set of peer-reviewed treatment guidelines for PANS and its companion diagnosis, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, or PANDAS. Margo Thienemann, MD, clinical professor of psychiatry and behavioral sciences at Stanford, is the lead author of the portion of the guidelines that address psychiatric and behavioral interventions. Thienemann co-directs Packard Children’s PANS clinic, the first in the country exclusively devoted to the disease, with Jennifer Frankovich, MD, clinical associate professor of pediatric rheumatology.
Thienemann spoke with Erin Digitale about why the guidelines were needed and what else can be done to raise awareness of the condition.
Q. What do children and families affected by PANS/PANDAS experience?
Thienemann: Parents often describe children as turning into somebody completely different overnight. A child who was functioning just fine might suddenly feel like they had been “possessed” by something. They may be tearful and unable to separate from their parents. They may suddenly develop vocal or motor tics. The child may suddenly, after never having had appreciable obsessive-compulsive symptoms, engage in long periods of checking behaviors or cleaning behaviors, over and over. It suddenly takes hours to get out of the house or get the child to bed.
In addition to OCD symptoms, the other cardinal symptom is food refusal. Kids will suddenly be afraid to eat for fear they will choke, or fear that the food is poisoned, contaminated or spoiled. They may say food smells awful or express fear of vomiting. Again, this appears out of nowhere.
It’s like being hit by a train. Most often, the child will miss some school and at least one parent has to take a leave from work. It’s extremely anxiety-provoking because a normally functioning child suddenly can’t go to school, sleep, eat or be apart from parents, and is involved in rituals and tics. Another thing that’s very disruptive is trying to find someone who will provide medical and psychiatric care for your child. How do you find someone if providers say “I don’t believe in it” or “I don’t know how to treat this”?
Q. Why were the PANS/PANDAs treatment guidelines needed?
Thienemann: Right now, there isn’t enough solid, empirical evidence to say definitively “this is what you do” for these patients. For some aspects of treatment we have evidence, but overall we have to bridge the gap between our current clinical experience and knowledge, and the clinical studies. We are continuing to collect evidence, but many children will be identified with PANS/PANDAS before that work is complete. Physicians and other professionals need to know what to do for them now.
Also, despite the fact that we published diagnostic guidelines for PANS/PANDAS in 2015, I think some physicians still feel it’s not legit. We want physicians to take this disease seriously and, even more importantly, we really want them to treat it.
Q. What are some of the most important elements of the guidelines?
Thienemann: The treatment is at least tri-part. The main thrust of treatment is that if there is a triggering infection, we should treat the infection, and also treat close contacts who may be exposing the child to infection. We also have to treat inflammation, which is what we think causes the brain symptoms.
The psychiatric portion of the guidelines recognizes that the child and family are really suffering and the child needs psychiatric treatment to help with symptoms. We have to manage the child’s distress so they can get medical treatment, get blood drawn, get MRIs, take medications, so the family can sleep, and the child can sleep. We also need to help the family understand what might be going on, what they can anticipate from treatment, how to interact with each other and their child around the illness, and how to interact with the child’s school.
Unfortunately, a lot of the tools in psychiatry are medications — for OCD, depression, ADHD, tics — that don’t work the same way on an acutely inflamed nervous system as they would on garden-variety, idiopathic childhood mental illnesses. When medications are used, usually for residual symptoms, the guidelines suggest beginning with one-fourth of the typical starting dose of medication and increasing the dose very slowly. There can be complex interactions between medications, and between the medications and other changing variables related to where a child is in the illness and concomitant treatments. It makes treatment complicated.
Q. What are some of the gaps in how our health care system is set up to treat these children?
Thienemann: Unfortunately, we lack a good place to hospitalize these kids.
If we put them in a pediatric hospital when they’re unpredictably agitated or rageful, it doesn’t work. Pediatric hospitals are not set up for kids who may run out of the hospital or hit someone. Little sounds bother PANS/PANDAS patients, so the constant beeping of monitors doesn’t help, and lights bother them, so they don’t sleep in a hospital setting. It can be very difficult on hospital staff.
Psychiatric hospitals are also hard for these patients to tolerate. They have a brain inflammation problem, not a behavioral problem, so typical behavioral interventions aren’t helpful. And in psychiatric settings, parents don’t get to stay with their children. For many other pediatric psychiatric diagnoses, the parents may be a part of the problem, and some of the process of diagnosis is seeing how the child acts away from parents. But most children with PANS/PANDAS have terrible separation anxiety as part of their illness, and it’s very hard on them to be away from their parents. Psychiatric hospitals also are usually not comfortable working up an infection or giving intravenous treatment, which is required for some of the immune therapies used for this disease, so the children’s medical needs can’t always be met in a psychiatric setting.
Often, there is no place other than home to treat children with PANS/PANDAS, which can be really hard on the family. Ideally, for the future, I see a day when we have med-psych units for these patients in the same way that we now have excellent med-psych units for eating disorders. We would need hospital staff who specialize in addressing the psychiatric problems and family stress that go along with PANS/PANDAS, as well as people who can diagnose and treat the more traditional medical problems.
Q. What other changes do we need next for PANS/PANDAs patients?
Thienemann: Early identification. When someone comes to their doctor with sudden behavioral change, emotional change, suddenly has tics or suddenly stops eating, this disease should automatically be on the differential diagnosis. If we identify it early, it’s less complicated to treat and the patients have better outcomes.
For online support for parents with kids infected with Lyme/MSIDS: https://groups.yahoo.com/neo/groups/lymeparents/info
In case you missed the webinar session, or in case you’d like to watch it again, here’s the link to the replay video:
Title: “Lyme: The Great Imitator”
Description: TDI/Health Through Awareness presents Sue Massie, ND, CNHP who will be discussing her personal experience and latest information on Lyme disease.
Host: Liesha Getson, BCTT, CHHC, Sue Massie, ND, CNHP, Philip Getson, D.O.
If any of our followers are experts in a particular field and have a topic they think our audience would appreciate and that they would like to present on or know of any practitioners that would like to participate please contact:
Liesha at TDI: 856-596-5834
Lots of great info here. Since Lyme/MSIDS is such a complex illness(es), it’s imperative you deal with all the blow-back as well as imbalances these infections cause and exacerbate.
Listen to this, take notes, think about what symptoms and issues you have and take ideas to your practitioner. Nobody knows your body like you do. With your input, doctors are much more helpful. Speak up at your appointments and take ideas to them for consideration.