Thursday, July 31, 2014

Big news! New ILADS Lyme disease and other TBD guidelines released!

This is important news. Be sure to check out the new 'standards of care' guidelines that ILADS has released. 



Contact: Sue Ferrara, Ph.D.,  609.947.9489

New Standard of Care Guidelines for Treating Lyme and Other Tick-borne Illnesses Released by International Lyme and Associated Diseases Society (ILADS)

Bethesda, Maryland, July 31, 2014

How doctors treat patients with suspected Lyme infections needs to change so as to avoid potential long term illness and suffering.  To that end, the International Lyme and Associated Diseases Society (ILADS) today released updated guidelines for the treatment of Lyme and other tick borne infections which call on physicians to provide evidence-based, patient-centered care for those with Lyme disease.


Published in the August 2014 edition of the journal Expert Review of Anti-infective Therapy,the new guidelines, titled: Evidence Assessments and Guideline Recommendations in Lyme disease: The Clinical Management of Known Tick Bites, Erythema Migrans Rashes and Persistent Disease, say current antibiotic protocols used by many physicians to prevent or treat Lyme disease are inadequate, leading to an increased risk of Lyme disease developing into a chronic illness.


"Chronic manifestations of Lyme disease can continue long after other markers of the disease, such as the erythema migrans rash, have resolved," said Daniel Cameron, M.D., M.P.H., and lead author. "Understanding this reality underlies the recommendation for careful follow-up to determine which individuals with Lyme disease could benefit from additional antibiotic therapy."


 ILADS is the first organization to issue guidelines on Lyme disease which comply with the standards set by the Institute of Medicine for developing trustworthy protocols. The document provides a rigorous review of the pertinent medical literature and contains recommendations for Lyme disease treatment based on the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) process. This review format is used byother well-respected medical organizations including the Cochrane Collaboration and theWorld Health Organization.


ILADS' GRADE-based analyses discovered research studies guiding current treatment protocols were of very low quality; and, the regimens based on these randomized controlled trials often failed.  "For this reason, we moved away from designating a fixed duration for antibiotic therapy for tick borne illnesses and instead encourage clinicians to tailor therapy based on the patient's response to treatment," noted Dr. Cameron.


"We not only recommend clinicians perform a deliberate and individualized assessment of the potential risks and benefits of various treatment options before making their initial selection,"  said guidelines coauthor Elizabeth Maloney, M.D., "we also recommend careful follow-up. Monitoring a patient allows clinicians to adjust therapy as circumstances evolve. This more selective approach should reduce the risk of inadequate treatment giving rise to a chronic illness," added Dr. Maloney.


The guidelines encourage shared medical decision making and taking patient values into consideration. Lorraine Johnson, J.D., MBA, a coauthor and Executive Director, noted, "A lot of the treatment decisions in Lyme disease depend on trade-offs. How sick is the patient? How invasive is the treatment? What is valued by the patient? Patients need to understand the risks and benefits of treatment options to make informed medical choices," added Ms. Johnson. "These guidelines provide that information."




ILADS is a nonprofit, international, multidisciplinary medical society dedicated to the appropriate diagnosis and treatment of Lyme and associated diseases.



For more information:

Monday, July 28, 2014

Columbia University say antibiotics are not enough to treat Lyme

This sounds pretty exciting, to me. Columbia University is no slouch organization. 


Above and Beyond Antibiotics

Antibiotics are not enough to treat Lyme disease according to a new study in mice by Columbia University. Doctor Brian Fallon, director of the Lyme and Tick Borne Diseases Research Center at Columbia University, conducted a shocking experiment. The experiment was with lab mice that were infected with spirochetal bacteria (the underlying cause of Lyme disease). The mice were treated with antibiotics and later exposed to non-infected ticks. The ticks, after being exposed to the antibiotic treated mice still became carriers for the infection. The findings pointed to the fact that antibiotics don't cure Lyme disease. We understand that studies in mice do not always correlate to human studies but in over a decade of treating Lyme disease patients this data matches exactly what we have found clinically in our practice. Antibiotics are not enough. However, our medical group has discovered a revolutionary solution for patients to improve their quality of life.

We have found that Biofilm impedes the ability for antibiotics and other treatments to help patients. Biofilm is any group of micro-organisms whose cells stick to each other on a surface, kind of like a slime that protects infections. New research according to the University of New Haven suggests that Biofilm is protecting the Lyme disease spirochete from antibiotics and any therapy not containing a method to strip this biofilm may prove to be inferior. This is why a more comprehensive approach to medicine and treatment is required to help patients with Lyme disease. We have found a targeted method of delivering antibiotics and penetrating the biofilm makes treatment much more effective for our patients.

There are many other reasons why antibiotics alone are not enough to cure Lyme disease. One reason is that most patients have multiple infections including viral, fungal and parasites along with other co-infections of tick borne illnesses – antibiotics only fight bacteria. Another reason is that some patients are immune compromised to begin with and they have other functional medicine disorders which predispose them to developing chronic Lyme disease complex – antibiotics do not strengthen the immune system. Bottom line, patients need a more comprehensive treatment plan to better combat the disease.

The CDC and infectious disease community have been underplaying this disease for decades by claiming that all a patient needs is antibiotic to be cured. The data from Columbia University flies in the face of the current treatment philosophy for Lyme disease but our group agrees with the findings and has made the appropriate adjustments to help patients. Most patients follow the standard recommendations that have been set forth by the CDC.The CDC claims on their website, "Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics." They also say, "Approximately 10-20% of patients (particularly those who were diagnosed later), following appropriate antibiotic treatment, may have persistent or recurrent symptoms and are considered to have Post-treatment Lyme disease syndrome (PTLDS)." Based on the study from Columbia University, those numbers might be much greater than stated by the CDC, and these patients might resurface with fibromyalgia, chronic fatigue syndrome, rheumatoid arthritis and other autoimmune diseases. In our clinical experience a high percentage of patients that we come across have chronic infections that are untreated.

We know that antibiotics are not enough to combat Lyme disease effectively; this is why we developed a treatment plan that is aimed at the patient's specific needs and one that goes above and beyond antibiotics. If you have any questions about the article or need more information about treatment for Lyme disease please don't hesitate to contact us for more information.






USA Today article about a woman in Iowa with a Lyme diagnosis

Living with Lyme disease, searching for answers 
Kiersten Hathaway had a rash last fall. 
The Panora, Iowa, woman wondered whether it was Lyme disease, a bacterial infection transmitted by deer tick bites. She looked at pictures online, but didn't think her outbreak matched the red bull's-eye associated with Lyme disease. She didn't have a doctor check her hypothesis. She regrets that. 

Full story: 

Contact USA Today: 

Related Link 
Video from The Des Moines Register, "The toll Lyme disease has taken on two Iowans": 

Saturday, July 26, 2014

Dr. Mercola on Lyme Disease - Doesn't get better than this for a write up

This is an article from Dr. Mercola, a health and wellness educator and product salesman for his line of supplements, etc. Despite shameless advertising of his products, he is someone I often read for basic info about health scams, dietary and lifestyle do's and dont's, tips about disease prevention etc. You probably know him already and need no introduction. I've seen videos on his site wherein he interviews the celebrated LLMD, Dietrich Klinghardt. Dr Klinghardt has a radically different approach to Lyme treatment as compared to typical LLMDs. Always interesting to listen/see him. There is some discussion of Klinghardt in this article, below. 

Anyway, here is a repost of a sort of round-up of existing politics and medical aspects of Lyme that you might find interesting and educational. 

As I say, this is borrowed from Dr Mercola's web site, with references and links pointing back to it. I am not claiming copyright, which is Dr. Mercola's. I'm just reposting this article here for your convenience. 


Under Our Skin—A Shocking Film Exposes the Hidden Reality of Lyme Disease
July 26, 2014 | 128,879 views
The producers of this film are allowing a full and FREE viewing through 8/1. Please show your support by purchasing a copy of this important film! Quantities are limited! You can purchase a copy of the Under Our Skin DVD at a special discounted price of $24.95 by CLICKING HERE.
Visit the Mercola Video Library

By Dr. Mercola
Ticks can spread a number of diseases, including human babesiosis, Rocky Mountain spotted fever, and Lyme disease, which has become one of the most serious and controversial epidemics of our time.

According to preliminary statistics1 released by the Centers for Disease Control and Prevention (CDC) last year, approximately 300,000 new cases of Lyme disease are diagnosed in the US each year.

This is about 10 times higher than the officially reported number of cases, indicating that the disease is being vastly underreported. Since national surveillance began in 1982, the number of Lyme cases reported annually has increased nearly 25-fold.2

The Oscar shortlisted documentary Under Our Skin,3 exposes a hidden story of "medical and scientific malfeasance and neglect," as thousands of people with Lyme disease go undiagnosed, or get misdiagnosed each year. Many who suffer the troubling effects of Lyme disease are simply told that their symptoms are "all in their head."

As the film follows patients fighting for their lives and livelihoods, it brings into focus a haunting picture of a health care system that is all too willing to put profits ahead of patients. The featured version is the newly released Director's Cut, which includes 15 minutes of restored footage, re-edited scenes, and character updates.

What Is Lyme Disease?
Lyme disease refers to illnesses transferred by insects. Although many still attribute transmission exclusively to ticks, according to Dr. Deitrich Klinghardt, one of the leading authorities on Lyme disease, the bacteria can also be spread by other insects, including mosquitoes, spiders, fleas, and mites.

Ticks are blood suckers, and prefer dark, crevices such as your armpit or behind your ear, or your scalp. Once it attaches itself and starts feeding on your blood, it will at some point "spit" its bacterial load into your blood stream. If it carries an infectious organism, the infection will spread to you via this salivary emission.
Common side effects of tick bites include an itchy "bull's eye" rash, pain, fever, and inflammation. Symptoms of Lyme disease typically start out with unrelenting fatigue, recurring fever, headaches, and achy muscles or joints.

The disease may progress to muscle spasms, loss of motor coordination, and even intermittent paralysis, meningitis, or heart problems. For a more complete list of symptoms, refer to the Tick-Borne Disease Alliance.4 has also created a printable Symptom Checklist.5

Interestingly, a recent paper published in the journal Frontiers in Zoology6, 7 argues that ticks should be reclassified as venomous, noting that many of its salivary proteins, and their known functions, are similar to those found in scorpion, spider, snake, platypus, and bee venoms. An estimated eight percent of tick species are in fact capable of causing paralysis with a single bite.

The most simple presentation is the orthopedic forms of Lyme disease as they're typically more superficial, affecting the larger joints. When the microbes and the associated immune reactions are situated in the connective tissue, the infection presents as a "vague, dispersed pain," which oftentimes ends up being misdiagnosed as fibromyalgia by conventional doctors.

Lyme disease, just as syphilis was, is also known as "the great imitator,"8 as it mimics many other disorders, including multiple sclerosis (MS), arthritis, chronic fatigue syndrome, fibromyalgia, ALS, ADHD, and Alzheimer's disease.

The Lyme Paradox
Despite debilitating symptoms, many Lyme patients outwardly appear completely healthy, which is why Lyme disease has also been called "the invisible illness." People with Lyme often "look good," and their blood work appears normal, but their internal experience is a different story altogether.

As a result, many patients simply end up being referred to a psychiatrist. Doctors have even been known to accuse Lyme patients of being attention seekers, fabricating their illness...

A big part of the problem is that Lyme disease is notoriously difficult to diagnose using conventional lab tests. One of the reasons blood tests are so unreliable as indicators of Lyme infection is that the spirochete has found a way to infect your white blood cells.

Lab tests rely on the normal function of these cells to produce the antibodies they measure. If your white cells are infected, they don't respond to an infection appropriately. Interestingly, the worse your Borrelia infection is, the less likely it will show up on a blood test. In order for Lyme tests to be useful, you have to be treated first. Once your immune system begins to respond normally, only then will the antibodies show up.

This is called the "Lyme Paradox"—you have to be treated before a proper diagnosis can be made.

I recommend the specialized lab called Igenex because they test for more outer surface proteins (bands), and can often detect Lyme while standard blood tests cannot. Igenex also tests for a few strains of co-infections such as Babesia and Erhlichia.
That said, a negative on the Igenex test for these co-infections doesn't necessarily mean you are not infected, there are many more strains than they can test for.

There's great variation in the presentation of the disease as well, depending on where you contracted it, and whether or not you have any other coexisting infections. The only distinctive hallmark unique to Lyme disease is the "bull's eye" rash, but this is absent in nearly half of those infected. Fewer than half of Lyme patients recall a tick bite. In some studies, this number is as low as 15 percent.

The History and Discovery of Lyme Disease
Lyme disease was named after the East Coast town of Lyme, Connecticut, where the disease was first identified in1975.9 The disease was initially referred to as "Lyme arthritis" due to the presentation of atypical arthritic symptoms. By 1977, the black-legged tick (Ixodes scapularis, also known as the deer tick) was linked to transmission of the disease.

Then in 1982, Willy Burgdorferi, PhD, discovered the bacterium responsible for the infection: Borrelia burgdorferi. The bacteria are released into your blood from the infected tick, while the tick is drinking your blood. We now know there are five subspecies of Borrelia burgdorferi, more than 100 strains in the US and 300 worldwide, many of which have developed resistance to our various antibiotics.

Borrelia burgdorferi is10 is a cousin to the spirochete bacterium that causes syphilis. In fact, they look very similar under a microscope, and both are capable of taking different forms in your body (cystic, granular, and cell wall deficient forms), depending on what conditions they need to accommodate. This clever maneuvering helps them to hide and survive. B. burgdorferi's corkscrew-shaped form allows it to burrow into and hide in a variety of your body's tissues, which is why it causes such wide-ranging multisystem involvement.

The organisms may also live in biofilm communities—basically a colony of germs surrounded by a slimy glue-like substance that is hard to unravel. All of these different morphologies explain why treatment is so difficult, and why recurrence of symptoms occurs after standard antibiotic protocols.

Ticks can also simultaneously infect you with a number of other disease-causing organisms, such as Bartonella, Rickettsia, Ehrlichia, and Babesia. Any or all of these organisms can travel with Borrelia burgdorferi (the causative agent of Lyme) and each organism causes a different set of symptoms. Many Lyme patients have one or more of these co-infections, which may or may not respond to any given treatment.

The Ongoing Lyme Controversy
The Infectious Diseases Society of America (IDSA) publishes guidelines for a number of infectious diseases, one of which is Lyme. IDSA's 2006 clinical practice guidelines for Lyme disease11 claim that Lyme is very rare, and easily cured with two weeks of antibiotics, requiring 28 days in rare cases. They also claim there is no scientific evidence for chronic Borrelia infection. However, the literature choices they list in their reference section reflect a clear bias. Of the 400 references they cite, half are based on articles written by their own people. Their literature review in no way represents the total body of science related to the study of Lyme disease.

IDSA's guidelines have sweeping impacts on Lyme disease medical care. They are commonly applied by insurance companies to restrict coverage for long-term treatment and strongly influence physicians' treatment decisions. Insurance companies have denied coverage for long-term treatment, citing these guidelines as justification that chronic Lyme disease is a myth.

Opposing the IDSA is the International Lyme and Associated Diseases Society (ILADS), the members of which argue that Lyme disease is far more prevalent than previously recognized, in large part due to inaccurate laboratory tests. They also insist that many patients suffer long-term consequences, and require far longer treatment than recommended by IDSA.

Connecticut Senator Richard Blumenthal has been a strong advocate for people with Lyme disease.12 In 2007, while he was Connecticut Attorney General, Blumenthal conducted an antitrust investigation into the IDSA's panel members and 2006 Lyme disease guidelines. His investigation found rampant conflicts of interest in the IDSA, with numerous undisclosed financial interests among its most powerful panelists. Some of them had financial interests in diagnostic tests, vaccines, and insurance, for example.

IDSA agreed to create a new panel to review the ethics of the 2006 IDSA panel, overseen by Blumenthal's office. Eight hours of testimony13 from both sides of the fence were heard by the newly formed panel on July 30, 2009. Unfortunately, it didn't lead to any changes. The Final Report14 published on the IDSA site concluded that the original guidelines were "based on the highest-quality medical/scientific evidence available," and that the authors "did not fail to consider or cite any relevant data." As a result, chronic Lyme patients continue having to fight for their right to treatment. You can find suggestions for how to respond to insurance denials based on IDSA's guidelines on's website.15

Take Prevention Seriously
Considering the difficulty of diagnosing and treating Lyme disease, taking preventive measures16 should be at the top of your list:
Avoid tick-infested areas, such as leaf piles around trees. Walk in the middle of trails, and avoid brushing against long grasses path edgings. Don't sit on logs or wooden stumpsWear light-colored long pants and long sleeves, to make it easier to see the ticksTuck your pants into socks, and wear closed shoes and a hat—especially if venturing out into wooded areas. Also tuck your shirt into your pantsTicks, especially nymphal ticks, are very tiny. You want to find and remove them before they bite, so do a thorough tick check upon returning inside, and keep checking for several days following exposure. Also check your bedding for several days following exposure

As for using chemical repellents, I do not recommend using them directly on your skin as this will introduce toxins directly into your body. If you use them, spray them on the outside of your clothes, and avoid inhaling the spray fumes. The Environmental Protection Agency (EPA) has a list17 indicating the hourly protection limits for various repellents. If you find that a tick has latched onto you, it's very important to remove it properly. For detailed instructions, please see's Tick Removal page.18 Once removed, make sure you save the tick so that it can be tested for presence of pathogenic organisms.

Dr. Klinghardt's Treatment Protocol for Lyme Disease

Doctors who believe chronic Lyme to be a reality will typically rely on long-term use of antibiotics. While this treatment can be effective, there are many reasons to opt for alternatives such as those detailed in my interview with Dr. Klinghardt, as antibiotics will disrupt your gut flora, thereby exposing you to a whole host of other pathologies. Dr. Klinghardt's basic treatment strategies are summarized below. His full treatment protocol is too complex to include here, but if you want details, I recommend reading our 2009 article that focuses on those specific Lyme treatment strategies. You can also visit Dr. Klinghardt's website, where he posts his more current treatment protocols and recipes. In summary, there are five basic steps to his protocol:

Evaluation of all external factors
External factors include electrosmog, EMF, microwave radiation from wireless technologies, and molds. (For more information on mold, go to Ritchie Shoemaker's website19).Remediation and mitigation of external factors. Once external factors have been assessed, they're remediated and mitigated. (Please refer to our previous article on mold remediation.) To mitigate microwave radiation, Dr. Klinghardt recommends shielding the outside of your home with a graphite paint called Y Shield. Inside, he uses a special silver-coated cloth for your curtains. Patients are instructed to remove all cordless telephones and turn off all the fuses at night, until they have recovered from Lyme disease.Addressing emotional issues. Emotional components of the disease are addressed using Energy Psychology tools, including psychokinesiology (PK), which is similar to the Emotional Freedom Technique (EFT), but more refined and advanced.

Addressing parasitic, bacterial, and viral infections
 Dr. Klinghardt addresses the parasites first, followed by the bacteria and the viruses. The "Klinghardt antimicrobial cocktail," which includes wormwood (artemisinin), phospholipids, vitamin C, and various herbs, is an integral part of this treatment. He addresses viral infections with Viressence (by BioPure), which is a tincture of Native American herbs.Addressing other lifestyle factors. Nutritional considerations and supplements are addressed.

Also, the following table lists a variety of different treatment strategies that have been found to be useful in Lyme disease by those embracing natural methods.

Probiotics to improve immunity and restore microflora during and after antibiotics Curcumin is helpful at reducing neurological toxins and brain swelling
Astaxanthin to neutralize toxins, improve vision, and relieve joint pain, common in Lyme Whey protein concentrate may help with nutrition, often poor in Lyme patients who don't feel well enough to eat properly
Grapefruit seed extract may treat the cyst form of Borrelia Krill oil to reduce inflammation
Cilantro as a natural chelator for heavy metals Serrapeptase helps to break biofilms
Resveratrol may treat Bartonella, a co-infection and also helps detoxification GABA and melatonin to help with insomnia
Artemisinin and Andrographis, two herbs that may treat Babesia, a common co-infection CoQ10 to support cardiac health and reduce muscle pain and brain fog
Quercetin reduces histamine (often high in Lyme) Transfer factors can help boost immune function

Additional Resources

In Dr. Klinghardt's experience, the International Lyme and Associated Disease Society (ILADS) is by far the best and most responsible group. The following are some other resources you might find helpful. For more, see the Resource page on

Tick-Borne Disease Alliance (TBDA). Under the "Diagnosing TBDS" tab, you can find a listing of medical professionals knowledgeable in the treatment of Lyme

Lyme Disease Association, Inc.LymeDisease.orgUnderourskin.comLeading Lyme disease expert Joseph J. Burrascano, MD, wrote what is essentially a manual for managing Lyme disease, entitled Advanced Topics in Lyme Disease, which is worth adding to your resource files. Realize that his treatment focus is long-term antibiotics, which I believe should not be your first choice. Nevertheless, there is some good information in this publication.


Friday, July 25, 2014

Ozone therapy for Lyme? One person's account

I've been in conversation with someone from the ozone and Lyme Facebook page about the various kinds of ozone treatments for Lyme. I thought it might be helpful for Lyme patients who are considering ozone therapy to read the conversation. This is a work in progress, as the patient (who wants to remain anonymouse) reports in. I'll try to update this post as the reports of success or failure come in. Feel free to leave comments and get the conversation going....


Abbreviations are:

DIV = direct ozone IV

MAH =  major auto hemotherapy (another ozone treatment equivalent to DIV);

UV = ultraviolet light used as part of MAH treatment.

The only other place I know that uses ozone for Lyme like this on west coast is Gordon Medical, and I think this clinic is less expensive than Gordon although have not done exact comparison.

I have lots of info for everyone who is looking at the Nevada Center for ozone treatment. This is Dr. Shallenberger's clinic. You may have seen his newsletters. Here's the web site:

Today the receptionist told me that there are a bunch of Lyme people calling in to ask about pricing, and they were trying to figure out what to tell them. She wanted to know what we're averaging a day. So I thought about it and came up with some figures. They want this info to get out there, so I'm going to post it here.

There are two of us, and we're on different protocols, but the pricing is pretty much the same for both protocols.

The basic Lyme protocol for most people is DIV + Glutathione twice a day. My friend who is also being treated is doing a new, modified protocol, which is MAH + UV twice a day because she wasn't tolerating the DIV or the glutathione.

The CHEAPEST day here, where we would only do DIV or MAH twice daily (including Glutathione for the DIV, or UV for the MAH) is $300 per day, per person. Each of those treatments is $150. The glutathione is the expensive part of the DIV, at $125. The ozone in every case is $25 each time. The MAH plus UV is a total of $150 including ozone. If glut doesn't agree with you, you need to really let them know. They default to using it but I believe you can get it removed if you can't tolerate it.

This daily price, of course, doesn't include the extras - like colonics, ozone steam sauna, MCN, prolozone shots, and other IVs (lactated ringers IV comes to mind for us).
Ozone steam sauna is $45
Prolozone shots vary from $100- $200 apiece, depending on where in your body you get them.
Colonics are $97.50
Lactated Ringer IV is $75
"Myers Cocktail" IV is $110 if I read my receipt correctly.
Testing is not included in this list as it varies widely.
Supplements not included here for the same reason.

If you were going to go minimal and do all the DIV/MAH treatments each 4-day week, and add in one ozone sauna and one colonic, you would come out at $300x4= $1200, plus $45 plus $97.50 = $1342.50 per week.

If you were going to do more on the detox front, I'd add in at least one additional colonic and sauna a week. Consider that you might need a lactated ringer (this alkalizes your system), a Myers, or some other IV in addition at least a couple of times. My friend is needing the LR every day.

If you want to do the microcurrent neurofeedback (MCN) with Barry, that's another price and I don't actually have that information. You'd have to contact him for that and figure it out.

As for lodging, the Plaza Hotel is perfectly ok except the wifi is terrible here. Staff is really nice and the place is clean. Their pricing for the units with a kitchenette vary from $30 a night for the double queen room (that building is kind of crummy looking to be perfectly honest) to $45 a night for the king suite with kitchenette. Nevada has a law where the tax is waived if you stay for 28 days or more, so if you're planning to come for a month, take this into account. It saves you a lot of money. Also if you end up in a room with a tiny fridge, you can ask for a large fridge to replace it. They do have several.

I hope this info is helpful for everyone.

Thursday, July 24, 2014

Patients sue MDs for diagnosing Lyme

I just ran across this reprehensible article laying out the IDSA's strategy for patient lawsuits against doctors for "misdiagnosing" and treating Lyme disease. Here is a link to the article:


Monday, July 21, 2014

Health: A Growing Health Problem In Philadelphia Area Leaves Man Trapped In His Own Body « CBS Philly

stephanie-webPHILADELPHIA (CBS) — A life gone haywire because of what the family says was a missed medical diagnosis.  The Delaware County family wants to warn others as they fight to save their son.  Doctors say it could happen to anyone.  Health Reporter Stephanie Stahl has more on a grown man who has to be cared for like a baby.

Thirty-four-year-old Chris Valerio is a prisoner in his own body.  Just standing up is an ordeal.  He can't feed himself or talk much, but his parents say his mind is fine, he understands everything.

"It's very frustrating.  Obviously it's very disheartening.  We've had our days of tears," said John Valerio, Chris' father.

For his parents, it's heartbreaking to see Chris, who'd been such a free spirit.  He loved to travel and try new restaurants.  Now he can't chew, or do anything for himself.

Watch the videos and read the rest of the text:

Letter to the author of paper that 'disproves Lyme-Alzheimer's connection'

Okay, here's some interesting reading by a Lyme activist, Carl Tuttle. It's a letter to the author of a recent article in a medical journal that claimed a new study has disproven a link between Lyme disease and Alzheimer's. Check it out. There's a little background history that's interesting, also. 

Down at the bottom there is a petition that Carl has been circulating for some time, calling for a Congressional hearing on the debate about the existence of chronic Lyme disease. He has over 22,000 signatures so far. Check that out, too, if you haven't seen it before.


Study disproves link between Lyme and Alzheimer's diseases

by Blake Eligh
Journal of Alzheimer's Disease, May 19, 2014. DOI: 10.3233/JAD-140552

Collexis Holdings, Inc.
Life Science Solutions Leader
Europe, Via Bramantino 1, 6600
Corresponding author: Aaron A. Sorensen

Dear Aaron Sorensen,

In reference to the study disproving Lyme and Alzheimer's disease with its so-called "Author-disambiguation algorithms and bibliometric analysis platforms" where is the microscopic and biochemical evidence for this conclusion?

The Barry Marshall affect on chronic disease

Excerpt from the link above: (Must read entire link when you have a moment)

Twenty five years before researchers Barry Marshall and Robin Warren discovered H. pylori was causing peptic ulcer disease (not stress or diet) a physician in Greece was successfully treating with antibiotics.

John Lykoudis, a general practitioner in Greece reportedly treated more than 30,000 patients.

Now imagine if you will that a bacterium was responsible for the chronic diseases of our time; Multiple Sclerosis, Lupus, Lou Gehrig's, disease, Parkinson's, Alzheimer's disease, or Fibromyalgia? How large is the existing revenue stream for treating these diseases? Calculating exact numbers would be insurmountable.

Ironically these are the same diseases that Lyme patients are routinely misdiagnosed with as we hear the stories over and over again at support group meetings. If Lyme patients don't obtain the correct diagnosis then their "misdiagnosis" is treated maintaining the status quo which would be motivation for refusing long-term antibiotic treatment.

Lykoudis was unable to persuade the Greek medical establishment regarding efficacy of his treatment and was given a fine of 4000 drachmas by a disciplinary committee, and indicted in the Greek courts while unable to get drug companies interested in treatment.

Like Marshall and Warren, Lykoudis found physicians resist challenges to prevailing medical dogma. Ulcers were such a cash cow for gastroenterologists and surgeons that the Mayo Clinic for example was built on gastric surgery. Surgeons and drug companies had a vested interest in maintaining the status quo. That revenue stream however would soon dry up.

History repeats itself.

If late stage untreated Lyme represents say only 25% of today's chronic illnesses it still presents a substantial threat to existing revenue streams. It is blatantly obvious that what has been put in place has been done so to deny the chronic or late stage Lyme epidemic.

Comparison of Lyme Disease Prevalence and Disease Reporting in an Endemic Area

Journal of Microbiology Research


Holly Ahern Biology Department, State University of New York at Adirondack, Queensbury, NY, 12804, USA

In this study 16% of respondents experienced cardiac, rheumatologic, or neurological symptoms consistent with late-stage Lyme disease. Comparing late-stage Lyme symptoms to the general population was a brilliant idea because we believe the vast majority of Lyme patients are already in the healthcare system being treated for everything else but Lyme.

Our current 2-tier Lyme disease analysis has a sensitivity of 59% which is not much better than a coin toss. Faulty diagnostic tests have led to the disability of tens of thousands of Lyme patients through misdiagnosis and delayed treatment. Late stage Lyme disease does not respond well to short courses of antibiotics leaving these patients with the dilemma and financial burden of finding a way to treat beyond the IDSA's one-size-fits-all treatment guideline. It is time to recognize that serodiagnostics for Lyme disease is inherently flawed and should be scrapped for testing capable of measuring treatment failure or success in all stages of disease. (Unless of course it is necessary to hide evidence of persistent infection for some undisclosed purpose.)

Author-disambiguation algorithms and bibliometric analysis platforms are not a substitute for accurate/reliable diagnostic tests.

Respectfully Submitted,

Carl Tuttle
33 David Dr
HudsonNH 03051 

Petition: Calling for a Congressional investigation of the CDC, IDSA and ALDF  (22,431 signatures and growing)

Letter to the Editor, The Lancet Infectious Diseases Published May 2012

The Tuttle family was featured on New Hampshire Chronicle's "Living with Lyme" with the program archived on their site in six small segments for viewing on the computer

Part 1Part 2Part 3Part 4Part 5Part 6

BBC News: US HIV infection rate drops a third

BBC News

US HIV infection rate drops a third

The rate of HIV infections diagnosed in the United States has fallen by a third in the past 10 years, a new study finds.

Last week, the United Nations said that there were 2.1 million new HIV infections worldwide in 2013, down 38% from 2001.

By way of contrast, note that German medical officials estimate 1 million NEW cases of Lyme disease just in Germany, each year. Compared to the estimated 2.1 million new cases of HIV per year in the entire world, the math speaks for itself. It is quite credible to claim that annual new Lyme disease cases clearly outpace that of new HIV cases. We can only hope that some of the brilliant minds responsible for decreasing HIV transmission and for elevating the quality of life for AIDS victims will shift their attention to tick-borne-disease research. Obviously that will only happen if the necessary financial incentives are put in place. -Bob

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Thursday, July 17, 2014

Powerful story about Lyme

Anne Kingston
March 24, 2014

Macleans Magazine -- Canada

Lyme disease can masquerade as MS, ALS, even dementia, and its numbers are growing. So why is Canada lagging behind in treating it?

Lyme disease tests are only 50% accurate

A two-year study out of Johns Hopkins (2005) concluded that laboratory tests for Lyme disease were only 50% accurate at best. 


Note that this is before the culture test from Advanced Laboratory Services was available. 

Another Fecal Transplant article

Not a new article, but another reason to think seriously about fecal transplants as potential cure for hard-to-diagnose multi-systemic problems.

From The Scientist
Same Poop, Different Gut

For physicians and researchers alike, fecal transplants present an opportunity to gain insight into disease

By | November 3, 2010

 Most people might find the idea of having another person's feces injected into their intestine hard to stomach, but for those with intractable gastrointestinal problems, another person's bodily waste is all that's standing between a lifetime of severe illness and a full recovery.

Image: siteflight via stock.xchng

This therapy—known as fecal transplants, bacteriotherapy, or human probiotic infusions—has taken to the limelight in recent years, not only because its gross factor makes for great headlines, but in great part because of the growing epidemic of a particularly toxic strain of Clostridium difficile that has been plaguing hospitals across the U.S. for the past decade and affecting more than a quarter of a million Americans per year. By producing sturdy spores that can linger in the intestinal tract even after repeated antibiotic treatment, C. difficile can continually give rise to new toxin-producing colonies that wreak havoc on the colon.

But these colonies prove no match for fecal transplants, which boast a cure rate of up to 95 percent. At the heart of these transplants are the trillions of microbes that inhabit the gut and have a profound impact on the host's biology—for better or worse. As Australian gastroenterologist, Thomas Borody, jokingly puts it, "we are 10 percent human, 90 percent poo."

Borody did his first fecal transplant back in the mid 1980s, when he was confronted with one of the most difficult cases he had seen at the time: a woman who had vacationed at Fiji and had developed an incurable colitis through an unknown pathogen. While searching the literature for alternative treatments, he stumbled upon a paper published in 1958 in the journal Surgery that described four cases in which a similar condition was cured by infusing the inflamed guts of the patients with fecal samples from healthy donors. "So I looked at the method and I kind of made up the rest of it," Borody said.

The rest of the story is here:

Fecal transplant eases symptoms of Parkinson's

Editorial: " Why we need to respect bacterial culture"

Diabetes and even obesity, as well as Parkinson's disease, might be cured just by replacing the bacteria in your gut.
A FEW years ago, John Gillies had trouble picking up his grandchild. He would stand frozen, waiting for his Parkinson's disease to relinquish its hold and allow him to move. Then in May 2008, Gillies was given antibiotics to treat constipation, and astonishingly his Parkinson's symptoms abated. What on earth was going on?
Thomas Borody, a gastroenterologist at the Centre for Digestive Diseases in New South Wales, Australia, put Gillies on antibiotics because he had found that constipation can be caused by an infection of the colon. "He has now been seen by two neurologists, who cannot detect classic Parkinson's disease symptoms any more," says Borody.
Borody's observations, together with others, suggest that many conditions, from Parkinson's ...
This is an article in New Scientist:

You have to be a subscriber to read the rest of the article, but it's an exciting concept.