T

he tick hunter was hopeful he had found the cause of the disabling illness, recently named Lyme disease, that was spreading anxiety through leafy communities east of New York City. At a government lab in Montana, Willy Burgdorfer typed a letter to a colleague, reporting that blood from Lyme patients showed “very strong reactions” on a test for an obscure, tick-borne bacterium. He called it the “Swiss Agent.”

But further studies raised doubts about whether he had the right culprit, and 18 months later, in 1981, Burgdorfer instead pinned Lyme on another microbe. The Swiss Agent test results were forgotten.

Now STAT has obtained those documents, including some discovered in boxes of Burgdorfer’s personal papers found in his garage after his death in 2014. The papers — including letters to collaborators, lab records, and blood test results — indicate that the Swiss Agent was infecting people in Connecticut and Long Island in the late 1970s.

And scientists who worked with Burgdorfer, and reviewed key portions of the documents at STAT’s request, said the bacteria might still be sickening an unknown number of Americans today.

While the evidence is hardly conclusive, patients and doctors might be mistaking under-the-radar Swiss Agent infections for Lyme, the infectious disease specialists said. Or the bacteria could be co-infecting some Lyme patients, exacerbating symptoms and complicating their treatment — and even stoking a bitter debate about whether Lyme often becomes a persistent and serious illness.

Swiss Agent, now called Rickettsia helvetica, is likely not a major health risk in the United States, in part because such bacteria typically respond to antibiotics. Still, several of Burgdorfer’s former colleagues called for infectious disease researchers to mount a search for the bacterium.

Burgdorfer letter
After initial tests, Burgdorfer suspected the Swiss Agent caused Lyme. He shared the strong evidence with a close colleague in Switzerland to see whether he could verify the findings in patients there. Alex Hogan/STAT

“It should be done,” said Jorge Benach, a professor emeritus at Stony Brook University and a coauthor of Burgdorfer’s seminal 1982 paper describing the detection of the Lyme microbe. Public health concerns warrant a new study, Benach said, and with today’s more advanced “weaponry for pathogen discovery, it would make perfect sense.”

Dr. Paul Mead, chief of epidemiology and surveillance for the Centers for Disease Control and Prevention’s Lyme disease program, said that he wasn’t familiar with Rickettsia helvetica, but that “new tick-borne pathogens could certainly be out there.” He cited several found in the years since Lyme’s cause was discovered. Any serious, common co-infection would usually, but not always, be noticed by physicians as a distinct problem in Lyme endemic areas, he said.

In Europe and Asia, Rickettsia helvetica has been recognized as a relatively rare but sometimes serious health threat if untreated. It’s been linked to a handful of sudden deaths from heart disease, as well as facial palsy, deafness, meningitis, chronic muscle weakness, and temporary paralysis. But US laboratories don’t test for the Swiss Agent.

STAT was approached with Burgdorfer’s archives by Kris Newby, who is writing a biography of Burgdorfer and produced an award-winning documentary that sympathetically depicts Lyme patients and doctors who challenged the medical establishment over its approach to Lyme diagnosis and treatment.

The documents offer a tantalizing glimpse into how disease detectives tracked down Lyme’s cause — and how potentially significant loose ends can sometimes be dropped by researchers pressed for time and funding or diverted by more promising leads.

Burgdorfer note
Note written by Burgdorfer Burgdorfer Archives

They show that Burgdorfer intended to look more deeply into the Swiss Agent, which he had discovered in 1978 in Switzerland, but never did. His former colleagues speculate that he set aside this research to focus on identifying the cause of Lyme. When the Swiss Agent turned out to be an unlikely candidate after all, he redeployed his limited time and resources to other prospects.

But the papers suggest that he might have gone to his grave harboring regret that he didn’t follow up on the Swiss Agent findings, as reasonable as the decision was, Benach said.

On the top of a stack of documents in his garage was a mysterious note, penned boldly in red ink in the scientist’s unmistakable handwriting. “I wondered why somebody didn’t do something,” it said. “Then I realized that I am somebody.”

The Lyme wars

Lyme has now become one of the most common infectious diseases in the United States — it’s been found in every state except Hawaii, and is rampant in the Northeast and parts of the Midwest. The CDC estimates that 329,000 people are infected annually.

Lyme has also provoked what’s often described as a “war” over diagnosis and treatment. If Rickettsia helvetica is in the United States, some experts consulted by STAT said, unrecognized infections might be one of several factors contributing to the controversy, by creating confusion over the cause of some patients’ illnesses.

The Infectious Diseases Society of America, the CDC, and many doctors view Lyme as generally easy to diagnose with its characteristic “bulls-eye” rash and pinpoint lab tests, and easy to cure with two-to-four weeks of antibiotics. If the disease is not diagnosed and treated early — in up to 30 percent of cases, there is no rash — patients can develop longer-lasting and more serious symptoms. But most infectious disease doctors say a short course of antibiotics will cure those patients.

But an insurgency of renegade doctors and patients disagrees. They argue that the diagnosis is frequently missed because of poor lab tests and other factors, and that Lyme becomes a chronic condition when untreated or inadequately treated. The patients describe symptoms that include incapacitating “brain fog” and weakness, intense anxiety, severe muscle pain, and paralyzing headaches. Many say that they required treatment with antibiotics lasting months or longer to be cured after years of misery.

Although the few small clinical trials that have examined long-term antibiotic therapy up to 90 days have shown few if any clear benefits, this camp has gained a passionate following, including a cadre of researchers who publish papers supporting this alternative view, and a medical group — the International Lyme and Associated Diseases Society.

The medical establishment mostly views “chronic Lyme” as the product of quack doctors exploiting desperate patients by offering unproven therapies. The patients sometimes need psychiatric care, these experts say, but in any case, chronic physical complaints are not caused by an active Lyme infection. Some state medical boards have gone so far as to revoke licenses of doctors who prescribe long-term antibiotics.

Steere letter
Dr. Allen Steere, then a professor at Yale who first identified Lyme disease in patients, was excited about initial lab tests that strongly suggested that the Swiss Agent was Lyme’s cause. Alex Hogan/STAT
Willy Burgdorfer
Burgdorfer in his lab. Burgdorfer Archives

It’s hard to overstate the animosity that characterizes this clash. A few angry patients have compared establishment Lyme experts — including Dr. Allen Steere, who collaborated with Burgdorfer and has received death threats — to the Nazi doctor Joseph Mengele.

How might the Swiss Agent add fuel to this conflict? Steere, a Massachusetts General Hospital researcher and among the world’s leading Lyme experts, said some patients who believe they have Lyme, but who test negative for the infection, might be suffering from an illness caused by one of several other microbes. Rickettsia helvetica could be among them, he said.

Ticks often carry more than one pathogen, so patients can also have co-infections along with Lyme, which frequently begin with similar symptoms, such as fever, neck stiffness, and headaches.

“You can’t tell them apart clinically” in the first several weeks, Steere said. Co-infections can cause “more severe early disease … a phenomenon of the summer, when the tick bites.” Longer term, the confusion would not last because of Lyme’s distinct symptoms, even if the infection were untreated, he added.

Other experts noted that Lyme and Rickettsia helvetica have co-infected patients in Europe. Antibiotics normally cure Rickettsia helvetica infections, but diagnosis can prove difficult because the microbe does not cause a rash. If untreated or inadequately treated, the two infections share overlapping, serious, and sometimes persistent symptoms, according to clinical researchers. These include debilitating fatigue, severe headaches, muscle weakness, meningitis, facial paralysis, and sarcoidosis — a chronic inflammatory disease that can cause lung and skin problems. Numerous studies have linked Rickettsia helvetica to such ailments, although it is not regarded as a major public health peril in Europe.

Andrew Main, who conducted Lyme research at Yale University in collaboration with Steere and Burgdorfer, had Lyme early on, before its cause was discovered, and was among patients who showed evidence of co-infection with the Swiss Agent — a result that was included in Burgdorfer’s papers but that Main knew nothing about until informed by STAT. The positive tests for the Swiss Agent among Lyme patients back then, he said, strongly support the idea that it might be a current threat.

Robert Lane, a University of California, Berkeley, medical entomologist and Lyme expert who worked closely with Burgdorfer, is respected by both sides in the Lyme wars. He said Rickettsia helvetica could be a significant hidden factor that worsens Lyme infections and makes them harder to cure.

“You would want to look at it both ways. Could that organism, if present in some of the Lyme-disease endemic areas, infect people and cause clinical illness on its own, or react in concert with (the microbe that causes Lyme) or some of the other agents,” Lane said. “If you are looking for one or a few agents in a tick, you may be overlooking others that contribute to the disease burden.”

 

Swiss Agent - ticks
Ticks from Burgdorfer’s archives Ron Lindorf/Burgdorfer Archives

 

Finding the Swiss Agent

The man who found Lyme’s cause devoted his career to studying creatures sometimes described as tiny living cesspools, for the infectious stew of microbes ticks carry and transmit while sucking blood from animals or people.

While training for his PhD in his native Basel, Switzerland, Burgdorfer became a preeminent “tick surgeon,” as he called himself — dissecting thousands with eye scalpels and Swiss watchmaker forceps. In 1951 he became a research fellow at the federal Rocky Mountain Laboratories, a remote outpost in Montana’s breathtaking Bitterroot Valley that specializes in infectious agents.

Burgdorfer fell in love with the Bitterroot and with Gertrude Dale See — a secretary and technician at the lab. She won the multilingual scientist’s heart with her ability to speak French. They married and had two sons, and Burgdorfer became a US citizen and permanent lab employee.

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He rose to lead the work on Rickettsia, rod-shaped bacteria spread by ticks that cause ailments such as Rocky Mountain Spotted Fever — which is sometimes deadly for patients in New England as well as the West. Burgdorfer built a global reputation for his knowledge of Rickettsia and Borrelia — corkscrew-shaped “spirochete” bacteria of the same group as the species known for causing syphilis.

On a trip back to Switzerland in 1978, Burgdorfer and a few colleagues discovered in local ticks the previously unknown Swiss Agent — later named Rickettsia helvetica (from Switzerland’s ancient Latin name, Helvetia). He found the microbe infectious for meadow voles — a small rodent common in Europe and the United States — and deadly to chicken embryos. No one knew then that it also caused illnesses in people.

Burgdorfer returned with samples of infected ticks and Swiss Agent antigen, molecules from the bacterium that can provoke an immune response, for further study. When mixed with blood sera — a part of the blood that doesn’t contain blood cells — the antigen can show whether a person has been infected.

By then, Steere, a young Yale professor, had for several years been aggressively investigating why some of his patients in Lyme, Conn., were reporting serious and strange symptoms of an apparently new illness. He had found “that many patients suffered not only of arthritis, but also of disorders affecting the skin, muscular, cardiac, and nervous systems,” Burgdorfer told his official biographer from the National Institutes of Health in 2001.

Steere asked Burgdorfer to join the hunt for a tick-borne microbe believed to be at the heart of Lyme. He sent samples of his patients’ blood sera to Rocky Mountain Laboratories for analysis.

Swiss agent test
Blood sera from Lyme patients showed infection with the Swiss Agent. Results of 64 or greater were considered firm evidence, as this test showed for 6 of 11 patients. The test showed no infections with other Rickettsia. Alex Hogan/STAT

Sera tests showed that at least a dozen Lyme patients had been infected with Swiss Agent, and that at least six others might have been infected. The records did not make clear how many Lyme patients had been tested overall. Burgdorfer told Steere and other colleagues that the results pointed to a potential cause of Lyme.

Steere sensed a breakthrough. “I am excited to pursue further the possibility of a rickettsial etiology of Lyme disease,” he wrote to another researcher.

Burgdorfer was encouraged, in part, because of the test’s specificity: A positive result strongly suggested that the person had been infected with the Swiss Agent and not a different Rickettsia such as the one that causes Rocky Mountain Spotted Fever.

But when a second test method showed inconsistencies, doubts crept in about whether Swiss Agent was linked to Lyme. About 18 months later, Burgdorfer broke through, providing a rare undisputed fact in what would become the most disputatious of diseases: A spirochete causes Lyme. Years later, the microbe was named in his honor, Borrelia burgdorferi.

But he hadn’t given up on Swiss Agent completely.

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In the lab during this period, Burgdorfer infected US ticks with the Swiss Agent, his lab books show. The records don’t state his experimental goal, but Rocky Mountain Lab scientists often studied which animals and arthropods could be infected with different agents, and thus might be reservoirs or vectors for disease. He also looked for Rickettsia in ticks in Lyme-endemic areas and found dozens of examples, but often neglected to determine the specific rickettsial species.

In December 1981, just a few months after discovering the Lyme spirochete, he wrote to a Swiss colleague who was overseeing a young investigator’s defense of his PhD thesis concerning the Swiss Agent. Burgdorfer suggested this question: “Do you feel that ‘Rickettsia suisse’ is the etiologic agent of (Lyme)? If so, how would you go about proving this?”

Burgdorfer and his colleagues reported their discovery of the cause of Lyme in the journal Science in 1982. In a handwritten draft found among Burgdorfer’s papers, he described identifying Rickettsia in Lyme patients’ sera and ticks, and his efforts to rule out Rickettsia as the cause of Lyme — without naming the Swiss Agent.

But in the final Science article, he made no mention of Rickettsia. Not a word about possibly finding the Swiss Agent in this country has ever been published.

Swiss agent
Slides of the Swiss Agent from Burgdorfer’s files Ron Lindorf/Burgdorfer Archives

Finishing the hunt

Burgdorfer retired in 1986 at age 60, just a few years after the successful Lyme hunt put him at the pinnacle of his field.

“I started to realize that the research I used to do and was successful in doing has changed its character,” he explained to a National Institutes of Health biographer in 2001. “Molecular and genetic biology have replaced the technologies I was able to apply,” he said. “Since I had no basic training in these fields … I was unable to speak and understand the completely new language.”

Those fluent in the “new language” of molecular biology and genetics will be able to finish Burgdorfer’s work, experts said. If the Swiss Agent is here, they can find it.

The CDC’s Mead said his agency is using molecular techniques to look for evidence of bacteria in 30,000 sera samples from people suspected to have contracted tick-borne illnesses. If Rickettsia helvetica is in some of the samples, it probably will be found, he said. That process will taken several more years to complete.

Dr. W. Ian Lipkin, who directs the Center for Infection and Immunity at Columbia University, is hunting for viruses as well as bacteria living in ticks that spread Lyme, partly to understand why antibiotics sometimes fail in apparent Lyme cases.

Lipkin’s group has collected 5,000 ticks from New York and Connecticut. With funding from the Steven and Alexandra Cohen Foundation, he has so far identified 20 new viruses in these ticks, and is exploring whether they have caused harmful infections in people, using tests that can search for a wide range of tick pathogens in a single sera sample. Eventually, Lipkin said, this process could make the tests affordable on a mass scale.

“Everyone wants to get to the bottom of this,” Lipkin said. “All of this is critical to … finding out why some people respond to antibiotics and some people don’t, and whether or not the antibiotics being used are appropriate, and trying to find ways to link different bacteria and different viruses to different syndromes.”

Lipkin is seeking funds to expand the work to tick-borne bacteria, including Rickettsia.

Asked whether his methods could find evidence of infections with the Swiss Agent, Lipkin replied without hesitation. “The answer is yes,” he said. “If this particular rickettsial species is present, I’m sure we will see it.”

Swiss agent
Negatives of microscopic images of the Swiss Agent, from Burgdorfer’s archive Kris Newby/National Archives and Records Administration archives

Willy’s last words

After he retired, Burgdorfer sent most of his voluminous personal files to the National Archives in Washington, D.C., where they were cataloged for public viewing. Those records contained some Swiss Agent documents. Many more lay untouched for decades in his garage and home office in Hamilton, Mont.

Late in life, Burgdorfer developed Parkinson’s disease and became increasingly infirm. A friend listened to his fears that his garage files might be lost to history. She urged Burgdorfer to contact Ron Lindorf, then an entrepreneur and business professor at Brigham Young University, who had been suggested by colleagues.

Early one morning in June 2014, an agitated Burgdorfer called Lindorf with an urgent request: “Come to Montana and get all my research, my files. I want to put it on the internet so people can see it,” Lindorf recalled him saying.

Lindorf was not a professional archivist, but agreed: His children had suffered from serious bouts of Lyme disease, he was eager to help the scientist who discovered Lyme’s cause, and he had the ability to take on the complex job. The next month Lindorf arrived in Hamilton, departing two days later with his SUV packed full of old files. That November, Burgdorfer died.

To better understand the Burgdorfer archive, Lindorf began collaborating with Newby, producer of “Under Our Skin,” the Lyme documentary. She shared the documents with STAT, hoping that an independent report would illuminate a possibly hidden risk for Lyme patients and others.

Lindorf returned to Montana last year to visit Burgdorfer’s second wife. She pointed across the garage to some additional boxes. Inside a cardboard portfolio covered in flowery fabric and closed by a metal clasp, he found more of the Swiss Agent archives, topped by Burgdorfer’s “I wondered why somebody didn’t do something” note.

“It made the hairs on the back of my neck stick up,” Lindorf said. “It felt like Willy talking from the grave.”

 

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  • Vital plan has really worked for me & I’ve been sick with all this since the 70s…it also is amazing for my sister too who was the one to get me to try it & she can’t have dairy, sugar or gluten to function well…I’m going to try everything she says to really get stronger! I’m also going to start my 2 daughters on it as they have battled with this too…mthfr is a factor for us maybe…my sister gets terrible die off the first week on full dose so I’m going slow…everyones body is different so I’m only up to 1/3 of the dose yet ,but feel so much better! I encourage anyone to give it a try

  • Vital plan has really worked for me & I’ve been sick with all this since the 70s…it also is amazing for my sister too who was the one to get me to try it & she can’t have dairy, sugar or gluten to function well…I’m going to try everything she says to really get stronger! I’m also going to start my 2 daughters on it as they have battled with this too…my sister gets terrible die off the first week on full dose so I’m going slow…everyones body is different so I’m only up to 1/3 of the dose yet ,but feel so much better! I encourage anyone to give it a try

  • Thanks for raising the subject. It is known since long times. Scientific names change. I was infected by that (or similar) in my youth. Firstly fever, then dammage to nerves and perhaps brain. I do not know, can not know, I am subject to other deadly infections. Rare barcteriae and funghi. Also my spinal cord and foramen are wrecked, physically. I suffer. I survive with too many drugs, so one can not distinguish what is what nor why.
    Once one’s defences are destroyed, everything takes above.
    Mine were destroyed long time ago. I’m 64 and yet am alive (no AIDS nor hypo-I-don’t-know-what, all negative. I not am medic, just enngineer).
    I hope that You will arrive to distinguish that hellish thing.
    If I understood rightly, after a short period of hard illness, often deadly, that thing goes under cover and remains there, waits to come up when one becomes feable. Like so many others… I die of three infections and of mechanical spinal and nervous hurts.
    I hope yhat you will arrive to cern that “unknown” well known illness.
    More power to you !

  • If I’m reading the hints here and elsewhere correctly, then it’s possible there is a virus-bacteria symbiosis happening. The way to see what I’m seeing in this revelation is to also know or research the theory about why MRSA and other bacteria are becoming resistant to multiple antibiotics. One of the theories stems from something already known about commensal bacteria in the human gut. First, the bacteria best able to turn carbohydrates into butyrate survive the longest under antibacterial attack. Second, viruses then multiply because the bacteria is weakened. If you remember your high school biology class, viruses aren’t really living things, they are a protein shell around a piece of dna, and they reproduce by inserting their dna in living cells, and hijacking the cell to make more viruses. Weakened bacteria are more vulnerable. Just like our own dna, much of the genetic material in a virus is redundant, or contains sections that are not used. One theory of antibiotic resistance is that the viruses act as a reservoir for resistance genes coming from the bacteria. We already know it can happen with carbohydrate metabolism. After a course of antibiotics, the commensal bacteria are better at processing carbohydrates into butyrate (providing a hidden source of “high fat” food even if all you eat is low fat). A similar process may be contributing to antibiotic resistance and something similar maybe happening to blood borne infections. That researcher is smart to be looking into viruses, but I hope he will also look at whether the bacteria contribute to the dna of the viruses, and if so, can they be a reservoir for the bacterial dna? Put more simply, I hope they will also look at the interaction of the viruses and bacteria and seek any synergy that may be happening.

    I’ve been chasing my tail for years with numerous physical problems that sometimes made me wonder if I was nuts and should just take psychiatric drugs. I even asked for them for a while to deal with the anxiety (no cause, yet anxious anyway, to the point of shaking). But I think in the absence of any good solutions from doctors (I’ve told literally 20+ doctors that I feel better for a while after any course of antibiotics, that should’ve been a CLUE!), I’m becoming convinced that protocol is the way to go here. Either that or I can willingly suffer. I’m amazed at the story here of the fellow who was sent to so many doctors and Infection Disease Center’s. I’ve never had that privilege, mostly I was shamed and ignored. But at least I know they wouldn’t do much anyway. Thank you for those who said what helped you. I’m sure something like that will help me too.

    By the way, isn’t rickets a disease you get from low vitamin D and no sunshine? Why is the bacteria called Rickettsia? Any connection? Does it destroy or use up your vitamin D or something?

    • First of all, Borrelia isn’t antibiotic-resistant, it is antibiotic-tolerant which is something very different (most of them die on antibiotics with sufficient dosage, but it has other lifeforms and persister cells that potentially survive antibiotic treatment).
      There are at least 1500 different bacterial species in the gut and we don’t know how many other lifeforms like fungi, protozoa, fungi etc. are present there. There are many more in/on other parts of our body. For just a fraction of those we have some idea what they do and how they interact with others and with the cells of our body.
      Viruses can transfer DNA between bacteria but Borrelia doesn’t need a virus for this, it has a very mobile genome with many plasmids. And it has its own virus build in, a ‘prophage’ that is activated under certain conditions and will kill the Borrelia.

      Ticks can carry hundreds of different pathogens that can potentially infect humans through a tick bite. Most of these are probably harmless, but just a few of them can be tested for with a standard medical tests (and most of these tests are unreliable). Tick bite disease patients may have unrecognized infections in addition to the ones that we know about and can be tested for. Reactions to infections may vary between individuals based on genetics, diet etc. This makes diagnosis and treatment complicated …

      Rickettsia is a large and very diverse family of intracellular bacteria, most of them pathogenic and spread by ticks or similar vectors. They are not related to the disease rickets. There are interesting cousins in this group, some of them beneficial and some of them pretty dangerous. The gentech bacterium from Monsanto, Agrobacterium tumefaciens, is also related to them.

      It’s important to note hat ticks and Borrelia have always been there and they never were a real problem for humans until very recently. Something has changed and it cannot be just the ticks or the Borrelia (or the deer …), unless you believe the more extreme versions of the Plums Island story. It may be that the real cause is that we made a mess of the environment / ecology, or of our own body through diet, chemicals etc. As long as we don’t understand where Lyme disease comes from it will be difficult to fully prevent and cure it.

    • Hello !
      I was rather happy to read you.
      Most of such illnesses rarely come alone,
      they mosty come out together when one already is feable for other reasons.
      In my case they argued five years long for to find out that at least there are two mycobacteriae “not normals”, perhaps more, impossibles to kill them without killing me, and at least two damned funghi. One is Aspergillum which met into a hole left by Xenopi, so one must ablate that lung. But they can not do that, as long as bacteria continue. So firstly they try to kill those bacteria. Damned thing is that those are “mycobacteria”, no real autside shell were markers might fix. That means that antibiotics don’t really work. Some of those bacteriae seem to be “omniresistant”, whatever that means. Treatment against bacteria and funghi costs about three thousand $ per month, and kills me, too.
      All I know is, that I will die by those, one or an other, or all together.
      I just regret that I passed my life trying to help others, not me. Now it’s a little late. Even my children (adults) do not understand, they do not want to understand. They keep asking me for help, for money.
      I never asked them anything. I never will !
      Day before yesterday I wrote them, hard reality. They accuse me to accuse them, and give me your car, father !
      Now I get drunk. I emptied a bottle of vodka and continue on tequila.
      Pardon my bad english, I am german, living in France. Am old. Tired.

  • Interesting information, but as mentioned I wish and pray that the medical world would stop arguing over how to treat Lyme disease and figure it out. I have a 48 year old adult daughter – suffering in pain, is physically/mentally disabled and totally dependent on us, her parents. She has been diagnosed with blood tests, as well as symptoms and has been treated by two caring persistent brave physicians with current info regarding Lyme treatment. HELP US AND OTHERS – please find a successful treatment – instead of bashing the topic around. THANK YOU!!!

  • I too, am almost out of money and have found something – well, a few things that are helping me. Brief history: Diagnosed w/lyme, & co-infections seven years ago after being symptomatic for 30 years. Symptoms included cognitive issues, chronic fatigue, fibromyalgia, multiple chemical sensitivity, depression, anxiety, dysautonomia, intestinal dysbiosis, etc.. I have been treated for heavy metals (lead levels off the chart!), mold toxins, systemic yeast, lyme, babesia, bartonella and probably more that I can’t think of right now. After two years of antibiotics and a few herbs for lyme & co’s, I had my life back and felt better than I had in decades! I relapsed, had another tick bite, and went downhill fast. I tried the Cowden protocol on my own, but it did not help me. I flew across the country to see a well known lyme literate medical doctor (llmd) for three years. It became apparent that he was treating me according to his research (and not ilads guidelines). My mind was slipping away again (that’s putting it mildly), I was unable to function and almost broke.

    I read about Dr Bill Rawls in NC and his Vital Plan program. I ordered the Restore Program which consists of four of his supplements. They are based on Stephen Buhner’s protocol, but modified. I also take Sun Clorella and a good fish oil. It’s easy to follow and all I can afford it too. I’m not sure if I can post a link here, but you can google his name and/or the products. He has a few webinars and a lot of information on his site. I have been on the protocol for almost two months (almost at full dosage) and am quite pleased with results so far. I am not affiliated with this company in any way. It’s just what I’ve found and is helping me.

    Big things for me:
    Diet: If I’m not able to cook, I at least try to have a green smoothie every day. (dark leafy greens + other stuff) Learned about the importance of greens from Terry Wahl’s book, Minding my Mitochondria. No gluten, very little sugar (honey) or processed foods – you get the idea.

    Detox, detox, detox!!! I purchased a sauna before I ran out of money and can honestly say it was the best money I have ever spent on anything. Really. Find out if you have a problem with methylation or other problems with detoxification pathways.

    It’s a whole body problem – not just lyme. Your body is not able to do its job and get rid of the bad guys.

    Find a support group, if possible. The best information comes from those who have walked in your shoes. If there isn’t a group nearby, join one online. You are not alone – there many good people out there who can offer help and support.

    Peace & Best Wishes to all.

  • My last try at trying to find a answer. Cannot walk most days, Praying for a answer. Was told I do not have Lyme Disease. Test had positive 41,58and23 bands. Please can you help me? I don’t have insurance and nothing else left too sale. Thank you,Nora

  • While undergoing hepatitis C long term interferon/ribavirin therapy from 1997-2006, I was bitten by a tick during the 1999-2000 time frame while employed as a land surveying technician . Ultimately, my physicians believed that my unusual increasing visual disturbances, muscle aches and cognitive decline were caused by my HCV infection & therapy, and I became disabled by 2002. I tested positive for Lyme in December 2006 after a late October febrile illness necessitated a hospital emergency room visit. While at the ER, the attending physician performed a spinal tap which revealed elevated CSF protein. Between October-December 2006, an environmental inspection determined our home was inundated with high levels of multiple mold species and my wife and I were compelled to move after Aspergillus fumigatu was detected in my blood and our house cat tested “Strong Positive” for bartonella.
    Although I ended long term interferon/ribavirin HCV therapy in December 2006, no treatment or follow up was initiated for my Aspergillus exposure or my “positive” Lyme test but our cat was treated for bartonella and survived. In 2007, I developed increasing visual disturbances, double vision (diplopia) photopias & floaters, ultimately necessitating laser retina surgery. During 2006-2010, my neurological, visual (uveitis & iritis), low platelet count (thrombocytopenia) and re-occurring febrile/rash issues continued, increasing then decreasing, only to increase again in a cycle, while my physicians believed these symptoms to be related to my HCV infection. By the end of 2008, my liver specialist diagnosed primary sclerosing cholangitis (PSC) and prescribed long term ursodiol therapy to keep my bile ducts open and decrease my ever increasing GGT levels. By January 2009, my liver specialist revised his diagnosis to “PSC-Vanishing Bile Duct Syndrome” and referred me to the National Institutes of Health (NIH) Undiagnosed Disease program, which never acknowledged my liver specialist’s referral. In January 2010, I returned to the ER with severe gas, severe myalgia, right upper quadrant and right eye/optic nerve pain but the ER’s CT scan detected nothing unusual. Later in January 2010 a HIDA scan and “Motility Study” were ordered by my liver specialist, the results being inconclusive. The doctor conducting the motility study mentioned that they observed “something unusual” at the juncture of the jejunum & illeum, but they didn’t know what it was and took no biopsy. My liver specialist suggested subsequent cardiac and neurological followup. My cardiac workup detected Left Ventricular Hypertrophy (LVH) w/Diastolic Dysfunction Grade 1 and the neurological workup confirmed a sensory motor demyelinating neuropathy. When I mentioned to the neurologist that I had been bitten by a tick in the 1999-2000 time frame, he sent me to an infectious disease specialist, who tested me for Rocky Mountain Spotted Fever (RMSF). My June 2, 2010 RMSF test result was IgG=>256, but IgM was “negative”. When this Santa Barbara ID specialist refused to test me for other vector borne illnesses and refused follow appointments, I sought care at UCLA’s Infectious Disease Clinic in Santa Monica, CA. Subsequent testing at UCLA revealed that my RMSF IgG was 512, but all other vector borne illness testing were either negative or very low AB titers. After my third (6-29-2010) RMSF test by my wife’s primary care physician revealed my IgG test had risen to 1024, the UCLA ID specialist ultimately initiated 8 weeks of doxycycline therapy and said he would send my “paired sera sample” to the California Department of Health, Viral & Rickettsial Disease Laboratory-Richmond, CA(CDPH-VRDL-Richmond) and the CDC. The paired sera sample testing (June 2nd and June 29th 2010) for RMSF at CDPH-VRDL-Richmond detected IgM titers, verbally reported as 1:40 (06-02) and 1:10 (06-29), both IgM levels being below the “reportable level” of commercial RMSF testing. This same “paired sera sample” was sent to the CDC Rickettsial Zoonoses Branch and detected antibody titers to rickettsia Rickettsi and rickettsia Akari. During and initially after my RMSF doxycycline therapy, my symptoms improved, but ultimately my symptoms returned and my antibody titers have persisted to this day, rising and falling above the detection limit (1:64) up to and beyond 1:512. My subsequent consultations with infectious disease specialists at UC San Diego (2011) opined that the CDC test results were false positives related to his HCV infection, but the UCSD doctors made no mention whatsoever in their report of the IgG & IgM titers detected at CDPH-VRDL-Richmond. Since 2011, all of my efforts to determine if I am still infected with Rocky Mountain Spotted Fever have been thwarted by doctors specifically omitting any mention of the CDPH-VRDL-Richmond testing results, which showed elevating IgG and decreasing IgM antibody titers were detected in June 2010. Now that I have successfully attained (05-2015) and maintained my sero-negative hepatitis C (HCV) status, my rheumatological/neurological sequela continue without a definitive diagnosis, with my rheumatologist at Stanford Palo Alto offering another referral to the NIH Undiagnosed Disease Program. I can only conclude that America’s medical establishment is woefully ignorant regarding rickettsial bacteria symptomology, research and treatment because my contacts at the CDC state that researchers in France are decades ahead of American researchers and French researchers have a large rickettsial disease clinic in Marseilles, France. Walter Taylor-Lompoc, CA

  • Thanks all, for your clear perspectives; truly helps me try and wrap what little brain I have left around my on-going challenge; and thank you Vincent for the Cowden recommendation; Niek, I did purchase Buhner’s book; I can relate to the approach; my biggiest challenge is my “cognitive” skills have been compromised! It’s hard enough following my current doctors protocol; and Buhner’s book is deep; my current Lyme doctor is 90 miles away, and I’m losing confidence in “their concept”, in dealing with Lyme; they came recommended threw the grape vine, and yes, are a sincere Lyme Doctor; and trying to fly under the radar of the corrupt, current, medical / Insurance cults )the doctor having coding challenges) with the insurance companies trying to maximize profits. But I am running out of “money” to make these 90 mile drives, and then pay hundreds of dollars, for a doctor visit; not covered by my insurance, which the insurance is “hundreds of dollars “every month”. Realize, I am a simple laborer (someone has to be a laborer, right?) So, my income is limited. I’m beginning to think, I’m better off purchasing the Cowden program, >instead of hundreds spent on an office visit; at
    This point; how do you feel, and then get another round of antibiotics! I’m beginning to “feel” the Cowden protocol, and try and weave Buhner’s approach, >where it will compliment the Cowden program, and just go it alone for a while!! I can always go back to this doctor of I’m not improving! I’ve been in a die-off / re-infect cycle, S thing needs to Change! The whole idea of these bacteria, rebounding after the antibiotic assault is just amazing tenacity! Nature is a beautiful thing! Just don’t like being host to such nasty guest! Thank you again, for everyone’s focused responses. They do help; even Bill, the Insurance industry rep. attempting to protect some
    Bottom line; or a recepient of Grant Money at Yale or other…. But it’s still good to have “the attempt” of a good counter- point; even if they under the microscope, qualify as being weak in the end! Someone needs to make that stand to show an attempt
    to be balanced, even when they sorely lose the debate. Regards, Steve

    • Steve: Buhner protocol can cost just $20-30 a month. It really is DIY, you don’t need a prescription from the doctor or full understanding of the reasoning behind the protocol. But with neuroborreliosis you definitely need help to make sure you take the right herbs and right dosage. Maybe you have a family member who can assist you, to double-check what you are doing? Experience in medicine or chemistry is not required, just a clear head is enough 😉
      In patient polls herbal protocols show very good results for chronic Lyme treatment – often better than ABX. Don’t expect miracles, but a big improvement after several months on the protocol is certainly possible.

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