Is the Sky Truly Going to Fall For Patients With the ‘Untreatable’ Form of Lyme Disease?
By Alicia Cashman MS, Lyme patient and advocate
Recently an article appeared in Newsweek titled,“Untreatable Form of Lyme Disease Could Hit 2 Million Americans By 2020, Scientists Warn”(1). The title of this article is misleading at best and inaccurate at worst and will mislead many to falsely believe that Lyme disease cannot be treated properly.
If you are new to the world of Lyme, please understand there is huge polarity in the medical and research communities on nearly every single aspect of it. Disagreements on definitions, testing, diagnosis & treatment, and even on an understanding of the very organism itself abound. Thousands, possibly millions of patients are left alone to suffer in the fray with doctors too afraid to even treat them (2).
Lyme disease, around since the beginning of time, was “discovered” over 40 years ago by William Burgdorferi, but since then research has been scant and controlled by a highly vested group of individuals with patents on everything from test kits and vaccines, to other metabolomics (3). There are currently two lawsuits against the Centers of Disease Control (CDC) for the mishandling (4,5). The CDC completely ignores credible animal and foreign studies, continues to fixate on the acute phase, only supports its own research, and is run by what many call, “The Cabal.”
On the opposite end of the pendulum from the CDC and Infectious Disease Society of America (IDSA) is the International Lyme and Associated Diseases Society (ILADS), a group that despite persecution by state medical boards abiding by the antiquated and unscientific CDC criteria, dare to treat patients appropriately. While the CDC states that 21 days of doxycycline will essentially “cure” Lyme disease at every stage, yet denying that people can be chronically/persistently infected, ILADS states this disease is far more complex and requires many nuances to treatment. Recent research supports their stance.
Just last year, Garg et al. stated in their groundbreaking paper, “Our findings recognize that microbial infections in patients suffering from TBDs (tick borne diseases) do not follow the one microbe, one disease Germ Theory as 65% of the TBD patients produce immune responses to various microbes” (6). This polymicrobial aspect is completely ignored by the CDC/IDSA, yet research has shown patients that are infected with numerous pathogens have more severe disease of longer duration, not to mention the need for different medications for a longer period of time due to the stealthy nature of the pathogens but also due to immune suppression (7).
Garg et al. also highlighted the fact that borrelia is pleomorphic, which simply means that it has the ability to shape-shift when it feels threatened (6). Pleomorphism is also completely denied by the CDC. There are essentially four forms borrelia can take: spirochete, cell wall, non-cell wall (cyst or dormant form), and biofilm (a protective colony). At least two studies to date demonstrate that the CDC’s mono-therapy of doxycycline may actually push borrelia into the non-cell wall/dormant form to reemerge later when conditions are opportune (8,9). This could very well cause or exacerbate brain diseases such as Alzheimer’s, dementia, ALS, Parkinson’s, and many others (10). Patients have been misdiagnosed with these diseases only to find out much later that they are in fact infected with Lyme and/or the other pathogens that come with it (11). Once they start proper antimicrobial treatment effectively dealing with all the pathogens, these symptoms disappear altogether or improve dramatically.
Drilling this home further, Pathologist Alan MacDonald found borrelia (Lyme) DNA in 7 out of 10 brain specimens in patients who died from Alzheimer’s, and Dr. Klinghardt has gone on record stating that he’s never had a single patient with Alzheimer’s, ALS, Parkinson’s, or MS who didn’t test positive for Lyme (12).
Most of the quibbling is over patients who remain with symptoms, and despite what the CDC states, there’s a lot of them.
Recently, microbiologist Holly Ahern wrote about this issue of persistent symptoms clearly delineating that the CDC and mainstream researchers have been quoting and utilizing an inaccurate statistic about this important but neglected group (13). She states that the CDC’s usage of 10-20% of patients who remain with symptoms, whom the CDC labels Post Treatment Lyme Disease Syndrome (PTLDS), only includes patients who were diagnosed and treated quickly. It does not and should not include a much larger group who are infected for weeks to years before getting a proper diagnosis and treatment. Research shows this second group to be 30-40% of patients. Simply adding the two groups, reveals that 60% of Lyme patients end up with chronic symptoms. This higher percentage more accurately reflects what I see as a patient advocate. Simple math also shows that if the CDC estimates state that there are over 400,000 new cases of Lyme disease each year (more than double that of breast cancer), that means more than 24,000 will have continuing symptoms. This is per year – mind you.
This crucial issue has been denied by the CDC, and is important not only from the standpoint that 5.8 million Americans are living with Alzheimer’s, and dementia deaths have doubled in the last two decades (14), both of which could be caused or exacerbated by Lyme disease and/or the various coinfections that come with it, but because only certain drugs work on the various forms of borrelia as well as these coinfections. In fact, besides potentially pushing the spirochetal form into the cyst form to reemerge later, the CDC mono-therapy of doxycycline only works on two of the four forms (8). The remaining forms necessitate different drugs and potentially a longer treatment time – far longer than days. Bizzarely, my own dog with asymptomatic Lyme disease was treated for months by our veterinarian.
The other glaring issue is that the falsely skewed low percentages do not accurately reflect the numbers of those suffering with debilitating symptoms, which will automatically place it further down the pipeline of crucial research needing to be done. It’s the proverbial “Catch-22” with sick patients left to cope.
For the Newsweek article to state that this is an “untreatable” form of Lyme is a tad bit early since the CDC doesn’t even recognize pleomorphism, the polymicrobial nature of the disease, and that borrelia can even persist. While researchers, mainly from outside the U.S., have published studies on all these factors, the U.S. sits idly by, only doing yet again more research on the acute phase with faulty study parameters, and the continued CDC stance of using a simplistic mono-therapy that potentially could very well make patients worse-off in the long run. My own experience and that of many, many others is that we wouldn’t be alive today without treatment given by experienced practitioners utilizing judiciously applied and varied long-term antimicrobials.
I must add here that this is a far more herculean issue than it appears at first blush. Due to the CDC guidelines, doctors for decades have been persecuted by State Medical Boards for utilizing anything outside these literal mandates. My own doctor had to pay fifty-thousand dollars in legal fees to keep his practice (15). He’s far from alone. This is happening all over the U.S. as well as in other countries (2), and it’s often insurance companies turning them in.
Recently, I wrote an article about experienced and successful treatment nuances after Dr. Joseph Burrascano created a video for ILADS (16). In it, he not only lays out the sordid and politically motivated details of the history surrounding Lyme disease, but explains his in house studies performed with other health professionals to determine antibiotic efficacy utilizing microscopy. Let’s just say it’s a far cry more complex than 21 days of doxycycline which for the knottiness of Lyme disease and it’s coinfections is akin to throwing sand into the ocean.
While I’m thankful journalists are writing about this very real 21st century plague that has become a true pandemic, I hope they start doing their homework and report the fact this disease has been downplayed, denied, and mishandled for decades. The author of the Newsweek article not only used yellow journalism but erroneously used a picture of an American dog tick/wood tick that while capable of transmitting numerous pathogens, to date does not even transmit Lyme disease. Few journalists are studying the contradictory science and presenting both sides. Most articles read as CDC/IDSA propaganda, and that propaganda is killing people.
With all that is coming out on the seriousness of Lyme disease, the increasingly high infection rates, and the continued suffering of so many, the CDC, NIH, IDSA, and the big-name institutions working with them blithely continue on the same short-sighted road without blinking, while patients are still unable to get a proper diagnoses and treatment (17), and are still being told, “It’s all in your head”(18,19, 20).
The sky is going to fall for those with Lyme disease; however, if authorities continue to ignore worldwide research and fail to act on discoveries that show this plague is quite outside the box they’ve created for it. The only possible box this fits into is Pandora’s.
- Gander, Kashmira. “Untreatable Form of Lyme Disease Could Hit 2 Million Americans By 2020, Scientists Warn.” April 23, 2019. Newsweek. https://www.newsweek.com/untreatable-form-lyme-disease-could-hit-two-million-americans-2020-scientists-1403338. Accessed April 24, 2019.
- Teotonio, Isabel. “Everything About Lyme Disease is Steeped in Controversy. Now Some doctors Are Too Afraid to Treat Patients.” The Star. Dec.14, 2018. https://www.thestar.com/life/health_wellness/2018/12/14/everything-about-lyme-disease-is-steeped-in-controversy-now-some-doctors-are-too-afraid-to-treat-patients.html Accessed April 26, 2019.
- Lyme Disease Association, Inc. “Conflicts of Interest in Lyme Disease: Laboratory Testing, Vaccination, and Treatment Guidelines.” April 2001. http://lyme.kaiserpapers.org/pdfs/Conflicts.pdf
- Sin Hang Lee, M.D., v. The United States. 18-686 C. U.S. Court of Federal Claims. (2018) https://www.dropbox.com/s/zem4v9sceg1v63d/Lee%20CDC%20Complaint%205-15-2018.pdf?dl=0
- Torrey et al. v. Infectious Disease Society of America et al. 5:17-cv-00190-RWS. U.S. States District Court For the Eastern District of Texas Texarkana Division. (2019) https://madisonarealymesupportgroup.files.wordpress.com/2019/04/c8b05-torreyamendedcomplaint3-26-19.pdf
- Garg et al. (2018) “Evaluating Polymicrobial Immune Responses in Patients Suffering From Tick-borne Diseases.” Scientific Reports. doi: 10.1038/s41598-018-34393-9 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6206025/
- Krause et al. (1996) Concurrent Lyme Disease and Babesiosis: Evidence of Increased Severity and Duration of Illness. JAMA. http://www.lymepa.org/c07%20Lyme%20disease%20and%20Babesiosis%20coinfection.pdf
- Sapi et al. (2011) “Evaluation of in-vitro antibiotic susceptibility of different morphological forms of Borrelia burgdorferi.” Dovepress. doi: https://doi.org/10.2147/IDR.S19201
- Caskey et al. (2019) “The Functional and Molecular Effects of Doxycycline Treatment on Borrelia Burgdorferi Phenotype.” Frontiers in Microbiology. doi: https://doi.org/10.3389/fmicb.2019.00690
- Neuroscience News. “Researchers Identify Virus and Two Types of Bacteria As Major Causes of Alzheimer’s.” March 9, 2016. https://neurosciencenews.com/microbes-alzheimers-neurology-3826/. Accessed April 26, 2019.
- “Kris Kristofferson’s Memory Loss Caused by Lyme Disease.” Youtube, Uploaded by FoxNews, June 9, 2016.https://www.youtube.com/watch?v=oW1eFC2trJE
- Dr. Mercola. “Under Our Skin: The Untold Story of Lyme Disease.” mercola.com. October 13, 2012. https://articles.mercola.com/sites/articles/archive/2012/10/13/under-our-skin-documentary.aspx Accessed April 26, 2019.
- Ahern, Holly. “Medical Stalemate: What Causes Continuing Symptoms After Lyme Treatment?” Feb. 19, 2019. lymedisease.org. https://www.lymedisease.org/lyme-stalemate-ahern/ Accessed April 26, 2019.
- Dr. Mercola. “Dementia Deaths Have Doubled in Two Decades.” mercola.com. March 28, 2019. https://articles.mercola.com/sites/articles/archive/2019/03/28/alzheimers-death-rate-doubled.aspx? Accessed April 26, 2019.
- Zell, Fran. “Wisconsin Lyme Doctor Gets Reprieve.” Daily KOS. Jan. 29, 2012. https://www.dailykos.com/stories/2012/01/29/1059800/-Wisconsin-Lyme-doctor-gets-reprieve. Accessed April 26, 2019.
- Cashman, Alicia. “Why Lyme/MSIDS Research Remains in the Dark Ages.” Feb. 22, 2019. Madison Lyme Support Group. https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/. Accessed April 26, 2019.
- Broom, Brian. “‘It’s Just Crazy’: Why Is Lyme Disease Treatment So Difficult to Find in Mississippi?” April 19, 2019. Mississippi Clarion Ledger. https://www.clarionledger.com/story/sports/outdoors/2019/04/19/lyme-disease-mississippi-treatment-symptoms-support-group-diagnosis-doctors-hard-to-find/3246908002/ Accessed April 26, 2019.
- Golan, Jacquelyn. “It’s All in Your Head – Until Finally a Lyme Diagnosis.” lymedisease.org. Sept. 21, 2017.https://www.lymedisease.org/circuitous-route-lyme-diagnosis/. Accessed April 27, 2019.
- Dennis, Lori. “Lyme is ‘All in Your Head’ – A Wake-up Call to Mental Health Professionals.” madinamerica.com. March 4, 2017. https://www.madinamerica.com/2017/03/lyme-wake-up-call/. Accessed April 27, 2019.
- Bedrinana, Jessie. “Why Are Physically Sick Children Labeled As Mentally Ill?” lymedisease.org. June 30, 2017. https://www.lymedisease.org/jessie-bedrinana/. Accessed April 27, 2019.