ATA190 Cell Therapy – Could This Work for Some Lyme/MSIDS Patients?

November 28, 2018

https://multiplesclerosisnewstoday.com/2018/11/21/phase-1-trial-ata190-cell-therapy-shows-promise-treating-progressive-ms/

Phase 1 Trial of ATA190 Cell Therapy Shows Promise in Treating Progressive MS

by Patricia Inacio, PhD

In News.

Phase 1 Trial of ATA190 Cell Therapy Shows Promise in Treating Progressive MS

Atara Biotherapeutics’ investigational ATA190, a cell therapy that wipes out immune B-cells infected with the Epstein-Barr virus (EBV), led to neurological improvements and reduced symptoms in patients with primary and secondary progressive multiple sclerosis (MS), a Phase 1 trial shows.

The trial results were published in the Journal of Clinical Investigation Insightin a study titled “Epstein-Barr virus-specific T cell therapy for progressive multiple sclerosis.”

ATA190 is a T-cell immunotherapy that targets immune B-cells and plasma cells in the brain and spinal cord that have been infected with EBV. There is increasing evidence linking EBV infection with MS.

ATA190 is made from a patient’s own (autologous) immune cells, which are collected and modified in a lab to target the EBV-infected cells, then infused back into the patient’s blood. The goal is for the modified immune T-cells to recognize EBV-infected B-cells and kill them.

The Phase 1 trial (ACTRN12615000422527), conducted at the QIMR Berghofer Medical Research Institute and The University of Queensland, in Australia, evaluated the safety and efficacy of ATA190 as a treatment for progressive MS.

The study enrolled 10 patients — five with primary progressive MS (PPMS) and five with secondary progressive MS (SPMS). Patients had experienced progressive neurological deterioration due to MS for a mean of 10.1 years.

Participants were treated with four escalating doses of ATA190, administered intravenously over a period of eight weeks. The lowest and first dose was 5 million modified T-cells, followed by doses of 10, 15, and 20 million. Patients were followed for 27 weeks after the first infusion.

Results showed that ATA190 was well-tolerated, with no severe adverse events detected during the study. One patient experienced a potential treatment-related adverse event — dysgeusia, a distortion of the sense of taste.

Efficacy was measured by several parameters, including changes in the Expanded Disability Status Scale (EDSS) score, fatigue, as well as cognitive and other neurological parameters. Researchers also analyzed patients’ brains by magnetic resonance imaging (MRI) and tested their cerebrospinal fluid (CSF) — the liquid around the brain and spinal cord — for the presence of antibodies.

Seven of the 10 patients had improvements in neurological parameters — such as increased productivity, cognition, and word finding — accompanied by a reduction in symptoms. These benefits began two to 14 weeks after the first infusion.

Fatigue, one of the most disabling and hard-to-manage symptoms of MS, was reduced across the group — the median Fatigue Severity Scale score was lower at week 27 compared to the beginning of the study. This decrease, however, didn’t reach statistical significance.

Analysis of the CSF showed that levels of antibodies were reduced at the end of the study in four out of nine patients. Moreover, three of those four patients showed neurological improvements.

Patients received T-cells with different degrees of reactivity against EBV. Six patients who received T-cells with strong EBV reactivity showed clinical improvement; three of those experienced improvements in the EDSS score.

The other four patients received T-cells with weak EBV reactivity; of these, one showed improvement. None experienced a change in the EDSS score.

The team said that overall, the results show that the benefits seen are linked with T-cell effects.

“We previously presented promising initial ATA190 results in patients with progressive MS, and [now] the published results confirm our earlier observations,” Professors Michael Pender, of The University of Queensland, and Rajiv Khanna, coordinator of QIMR Berghofer Centre for Immunotherapy and Vaccine Development, the study’s lead authors, said in a press release.

“Findings from the study support growing evidence that targeting EBV-positive B-cells is a potential novel treatment modality for MS and merit additional investigation,” Pender and Khanna said.

“T-cell therapy targeting only EBV-infected B-cells is a treatment modality that could offer favorable safety and durable efficacy,” they wrote, adding that their work “sets the stage for further clinical trials with autologous and allogeneic EBV-targeted T-cell therapy in MS.”

Atara is developing another therapy, ATA188, to eliminate EBV-infected B-cells in the central nervous system. ATA188 uses immune cells from donors, not from the patients themselves — an allogenic therapy.

“We are also advancing an ongoing Phase 1 off-the-shelf, allogeneic ATA188 study in patients with progressive MS across clinical sites in the U.S. and Australia. We look forward to continued development of both programs, including our plans to initiate a randomized ATA190 MS study,” said Dietmar Berger, MD, PhD, global head of research and development of Atara Biotherapeutics.

___________________

**Comment**

I can’t help but think this therapy could help many Lyme/MSIDS patients.  EBV is often a player in our illness and many have written about it:

https://madisonarealymesupportgroup.com/2018/04/25/ebv-protein-can-turn-on-genes-for-autoimmune-diseases/

https://madisonarealymesupportgroup.com/2017/11/04/24514/  (EBV – A Key Player in Chronic Illness)

Folks with Lyme/MSIDS have been misdiagnosed with EBV: https://madisonarealymesupportgroup.com/2017/04/11/diagnosed-with-ebv-had-lyme/ and others have it as well as tick-borne infections.

The involvement with numerous viruses is quite common in patients as well.  https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/  For the first time, Garg et al. show a 85% probability for multiple infections including not only tick-borne pathogens but also opportunistic microbes such as EBV and other viruses.

https://madisonarealymesupportgroup.com/2018/04/21/neurological-lyme-disease-what-you-need-to-know/

“Once microbes start becoming active, inflammation increases and immune functions are further compromised, establishing what I call Chronic Immune Dysfunction (CID). In its weakened state, the immune system allows reactivation of viruses such as Epstein Barr virus (EBV), Cytomegalovirus (CMV), and other similar viruses — all of which most people harbor in their tissues. These viruses are commonly associated with neuroinflammation, and they tend to complicate the picture of LNB.”

This study shows elevated B-cells in those with untreated Lyme:  https://www.frontiersin.org/articles/10.3389/fimmu.2018.01634/full

http://simmaronresearch.com/2018/09/post-treatment-lyme-disease-unmasked-immune-holes/  Mouse studies have shown that the Borrelia burgdorferi bacteria that cause Lyme disease hammer the B-cells….

Results

We herein identify plasmablasts as a key B cell population that correlates with resolution of Bb infection and Lyme disease in humans.   The authors

They found that B-cells called plasmablasts were elevated prior to antibiotic treatment in patients who returned to health. Plasmablasts are activated B-cells which circulate for a time in the blood in response to an infection. The higher level of plasmablasts in the recovered patients suggests that these patients simply mounted a stronger immune response to the infection. That was kind of a no-brainer, but the strength of the study was that they were able to specify what part of our amazingly complex immune system the problem was in.

They also determined that the patients who returned to health also exhibited significantly greater clonal expansion: their activated B-cells produced more clones designed to target and get rid of the bacteria. Again, in retrospect, not a surprising finding, but one that does open up a possible treatment option that hasn’t previously been available.

 

 

 

Category:

Inflammation, Lyme, research, Treatment, Viruses

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Human Activity May Influence the Distribution and Transmission of Bartonella Bacteria

https://www.sciencedaily.com/releases/2018/11/181115145107.htm

Human activity may influence the distribution and transmission of Bartonella bacteria

November 15, 2018
Source:  PLOS

Summary:
A new study suggests that humans play an important role in disease risk, infection patterns, and distribution of Bartonella, advancing current understanding of Bartonella’s evolutionary history and how the bacteria may be transmitted between humans and other animal species.

FULL STORY
Bartonella bacteria are disease-causing, blood-borne pathogens found in various mammal species. A study in PLOS Neglected Tropical Diseases by Hannah Frank and colleagues at Stanford University, California suggests that humans play an important role in disease risk, infection patterns, and distribution of Bartonella, advancing current understanding of Bartonella’s evolutionary history and how the bacteria may be transmitted between humans and other animal species.

Cross-species Bartonella transmission poses a threat to public health, wildlife, and domestic animals. However, the evolution of Bartonella strains and mechanisms of cross-species transmission are not well understood. To determine the bacteria’s evolutionary history and global distribution, researchers constructed global phylogenies using sequences accessed from public databases and built models to test their hypotheses. Additionally, they analyzed instances of Bartonella spillover from animals to humans using genetic isolates and case data collected from scientific literature.

The authors note that “phylogenetic inferences about the origin of infections should be interpreted with caution as they are heavily influenced by available data and the taxa that have been sampled.” More data are needed to verify findings and fill in remaining knowledge gaps. However, their study advances scientific understanding of human impacts on the spread of infectious disease:

“In thinking about disease transmission between animals and humans, we often focus on the animals as the source of new human infections and not the role of the humans in influencing their own risk. Our findings suggest that humans play a significant role in changing infection patterns not only for ourselves but for our domestic animals and wildlife, too.”

Story Source:

Materials provided by PLOS. Note: Content may be edited for style and length.

Journal Reference:

Hannah K. Frank, Scott D. Boyd, Elizabeth A. Hadly. Global fingerprint of humans on the distribution of Bartonella bacteria in mammals. PLOS Neglected Tropical Diseases, 2018; 12 (11): e0006865 DOI: 10.1371/journal.pntd.0006865

__________________

**Comment**

For more on Bartonella:  https://madisonarealymesupportgroup.com/2016/01/03/bartonella-treatment/

https://madisonarealymesupportgroup.com/2018/09/20/humana-bartonellosis-perspectives-of-a-veterinary-internist/

https://madisonarealymesupportgroup.com/2018/07/10/bartonella-henselae-neuroretinitis-in-patients-without-cat-scratch/

https://madisonarealymesupportgroup.com/2018/11/10/neurological-presentations-of-bartonella-henselae-infection/

https://madisonarealymesupportgroup.com/2017/10/23/opthalmic-manifestations-of-bartonella-infection/

https://madisonarealymesupportgroup.com/2017/01/04/endocarditis-consider-bartonella/

 

 

Category:

Bartonella, research

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Dr. Bransfield Presents on Lyme to Welsh Parliament

November 27, 2018

 Approx. 15 min.

Dr. Robert Bransfield: Presentation on Lyme for Welsh Parliament

Published on Nov 24, 2018

“Many patients with [Lyme and other] tick-borne illnesses are given other diagnoses and are told their impairments cannot be cured and can only be managed. As a result, some of these patients are given the diagnosis of multiple sclerosis, motor neuron disease, myalgic encephalomyelitis / chronic fatigue syndrome, bodily distress syndrome, and a number of mental illnesses and these diagnostic errors obstructs access to more effective treatments.
Caution must be used in considering the symptoms as having a psychogenic basis, such as hypochondriasis, somatization disorder, or a psychosomatic condition.
If a complex, progressive multisystemic illness begins in a person who had been reasonably healthy throughout most of their life, the likelihood that this is psychosomatic or has some other psychogenic basis is very remote.”
_____________________
For more:

 

 

 

Category:

Activism, Lyme, Psychological Aspects, Ticks

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UC Study: Hungry Ticks Work Harder to Find You

https://www.uc.edu/news/articles/2018/11/n2048879.html

Screenshot_2018-11-27 UC study Hungry ticks work harder to find youUC professors Andrew Rosendale, left, and Joshua Benoit discuss their research project in Benoit’s lab. Photo/Joseph Fuqua II/UC Creative Services

UC study: Hungry ticks work harder to find you

University of Cincinnati biologists discover the parasite’s metabolism speeds up after months of fasting so it can pursue a meal

Michael Miller
Tue, November 20, 2018

 

Ticks are hardy little brutes that can go as long as a year without a meal.

Now scientists at the University of Cincinnati say the hungrier ticks are, the harder they try to find you or other hosts. The findings could have implications for the spread of tick-borne disease such as Lyme or Rocky Mountain Spotted Fever.

“Starved ticks are more likely to look for a host,” said Andrew Rosendale, lead author of the study and UC adjunct assistant professor of biology. “Other studies have found that starved ticks take larger blood meals. They’re attached to the host longer, which provides a greater opportunity to transmit diseases.”

The study was published in the journal Molecular Ecology.

“The more they were starved, the more they were priming themselves for that next blood meal.”  Andrew Rosendale,UC biology professor

A closeup of a tick questing with its forelegs stretched out.

A lab tick reaches out its forelegs in a behavior called questing. Photo/Joseph Fuqua II/UC Creative Services

 

Ticks drink blood as larvae, nymphs and adults but spend most of their lives on the ground in tall grass, patiently biding their time for a victim and presumably ignoring their rumbling stomachs.

Finding a suitable animal upon which to feed is hard, so ticks must be prepared to wait. And wait. Rosendale, who also works as assistant professor at Mount St. Joseph University, said being able to go long periods without a meal is a tick’s superpower.

Biologists in UC’s McMicken College of Arts and Sciences studied the changing gene expression and physiology of lab-raised dog ticks that were subjected to more than 36 weeks of starvation.

Studies have found that starving animals often take bigger risks, such as hunting more dangerous prey or exposing themselves to predators to forage for food. UC’s research suggests ticks are no exception.

In the wild, adult ticks explore the undergrowth and climb tall grass. They reach out with the claws on their forelegs, a behavior called questing, to snag an animal’s fur or your denim jeans. Then they burrow into their hosts with mouthparts shaped like ratchets that keep them in place.

 

UC professor Joshua Benoit gestures while making a point in his biology laboratory.

UC biology professor Joshua Benoit studies disease vectors such as mosquitoes and ticks in his lab. Photo/Joseph Fuqua II/UC Creative Services

“People want to think of parasites as being awful things. But in ecosystems they’re important regulators in keeping populations in check.”  Joshua Benoit,UC biology professor

In the lab, UC researchers stimulated the ticks’ questing behavior by breathing into identical glass cylinders. (Ticks can sense carbon dioxide so they know when a possible meal is close at hand.) Biologists recorded differences in activity between just-fed ticks and starving ones. They found that starved ticks had higher activity levels and increased questing behavior than recently fed ones.

Starved ticks also had marked changes in their physiology and gene expression.

Ticks can go so long between meals because of their slow metabolism.

“In the absence of any host cues, they go into a dormant state where they don’t move around a lot,” UC biology professor Joshua Benoit said.

This helps conserve energy for the ticks’ preferred wait-and-see ambush strategy.

But after three months without food, a tick’s metabolism actually increases significantly — by as much as 100 percent — and remains at this higher rate for weeks in association with its increased activity. In fact, some researchers collect ticks in the wild by placing dry ice in the woods to entice them with the sublimation of carbon dioxide.

 

A UC student in long pants and a T-shirt drags a white linen flag along tall weeds with other students doing likewise behind him.

UC biology student Benjamin Davies drags a linen flag across tall grass to catch ticks for a related study at UC’s Center for Field Studies. Photo/Jay Yocis/UC Creative Services

 

Likewise, UC biologists found that genes related to immunity were activated by starvation, which could be another survival mechanism. Animals that feed on blood must have a immune system capable of fighting bacteria and other microorganisms. By activating genes associated with immunity, ticks might be preparing for an imminent meal.

More strangely, UC biologists found that genes associated with a starved tick’s salivary glands were activated. Saliva is known to help ticks drink more blood more quickly, a useful ability when you’re clinging precariously to a moving animal in thick brush. The sticky saliva also helps cement the tick to the host.

“The more they were starved, the more they were priming themselves for that next blood meal,” Rosendale said.

The project demonstrates the value UC places on research in its strategic direction, Next Lives Here.

The study was funded by the U.S. Department of Agriculture, UC’s Faculty Development Research Grant and the National Science Foundation. UC graduate Megan Dunlevy and Marshall McCue of the metabolic measurement firm Sable Systems International contributed to the study.

 

Students in labcoats and safety glasses work at a lab bench with pipettes and other equipment.

UC biology students Alicia Fieler, left, Madisen Kimbrel and Benjamin Davies perform labwork on ticks they collected in the field in this 2017 file photo. Photo/Jay Yocis/UC Creative Services

 

UC is tracking tick populations at its Center for Field Studies and in several forests in the Great Parks of Hamilton County, Ohio. Benoit and Rosendale have collaborated on several other tick studies.

Tick larvae feed mostly on mice and rabbits they find close to the ground. Nymphs and adults feed on larger mammals they reach by climbing up tall blades of grass. Benoit said ticks typically do not climb up trees or drop onto animals from the tree canopy. So if you find a tick on your head, it likely climbed up from your legs or waist.  (Please see comment at end of article)

Ticks are susceptible to temperature and humidity. Even short bouts of dehydration can shorten a tick’s lifespan considerably in the wild. But Rosendale said ticks are expanding their territories to exploit new habitat made available by climate change.  (Please see comment at end of article)

Ticks are especially problematic for wildlife such as moose that live in regions where the cold historically kept parasite numbers in check. Infested animals are sometimes called “ghost moose” because they rub off their dark fur to remove ticks.

“We’ve studied the moose tick as well in our lab. Moose are particularly susceptible because they’re not good at grooming themselves of ticks. They can be infested with thousands and thousands of ticks, so much so that they can die from blood loss,” Rosendale said.

Andrew Rosendale gestures while making a point surrounded by lab equipment.

UC biology professor Andrew Rosendale has spent years studying tick-borne illness. Photo/Joseph Fuqua II/UC Creative Services

 

While ticks might make a short list of most-reviled creatures, Benoit said they serve an important ecological role.

“People want to think of parasites as being awful things. But in ecosystems they’re important regulators in keeping populations in check. They transmit diseases that will kill deer, rabbits or mice,” Benoit said.

“Ecosystems are [delicate] networks. So eliminating a parasite could have major implications,” he said. “Two years of rabbit reproduction is a lot of rabbits.”

The earliest ticks recorded are more than 90 million years old and fed on dinosaurs. Benoit said there is something almost admirable about a natural design that has been perfected by evolution.

“Biologically, they’re interesting,” Benoit said. “They’re perfectly adapted to one thing: survival.”

 

A student wearing safety glasses holds a tick up to her face in a test tube.

UC student Madisen Kimbrel holds a tick in a test tube in a biology lab. Photo/Jay Yocis/UC Creative Services

__________________

**Comment**

While ticks do not typically climb trees or drop from them, THEY CAN.  It would be a huge mistake to omit this possibility. Legendary news anchor Mike Schneider, in this video states he received a bite from a tick that dropped down from a tree at a garden party on a deck.  I recently spoke with him at the ILADS convention and he stands by this belief:  https://madisonarealymesupportgroup.com/2017/07/13/tv-anchor-speaks-out-about-lyme-disease/

I know others who have said ticks have blown into their swimming pool from neighboring trees.  My neighbor, using his lawnmower on a tick infested area, blew them onto my house where they then got through the screen cracks and onto my basement wall.  (true story)

While it’s true ticks are susceptible to temperature and humidity, independent Canadian tick researcher, John Scott shows tick proliferation has nothing to do with climate change but rather migrating birds and photoperiod:  https://madisonarealymesupportgroup.com/2018/08/13/study-shows-lyme-not-propelled-by-climate-change/

Scott’s in-house tick studies have shown that black-legged ticks require 14 hours of daylight to molt. If ticks can’t molt, they can’t move on to their next life-cycle. Photoperiod is innate and can not be altered by the climate. He states:

“The hypothesis that I. scapularis ticks will expand further north in the Prairie Provinces because of climate change is not only unscientific, but deceiving.”

The study points out that both ticks and spirochetes are ecoadaptive survivors as demonstrated by the fact borrelial spirochetes have survived for thousands of years https://www.utoronto.ca/news/u-t-researchers-find-ancient-iceman-s-infection-helps-lyme-disease-bone-loss-discovery, https://madisonarealymesupportgroup.com/2018/02/12/the-persistent-spiral-the-ancient-history-of-lyme-disease-and-tick-borne-infections/, and so have infected ticks: http://www.sci-news.com/paleontology/blood-engorged-tick-dominican-amber-04757.html (This one infected with a Babesia species). This survival demonstrates adaptation to any potential climate shifts.

Another problem with the climate change models is they overlook the fact that deer ticks were established in northwestern Ontario, southern Manitoba and were already in central Canada prior to 1970. What they predict to happen in the future has already happened in Canada. Their oversight caused a skewed rate of tick expansion and a miscalculation of northward projected movement.

“For blacklegged ticks, climate change is an apocryphal issue.” – John Scott

On top of all of this, warmer winters are lethal to black legged ticks as there is less snow cover.  Ticks seek out leaf litter and snow cover in harsh weather.

More climate data will NOT help Lyme/MSIDS patients one iota.

 

 

Category:

research, Ticks

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Secretary Azar: Will You Continue to Turn a Blind Eye?

November 26, 2018

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/23665503?

Secretary Azar: Will you continue to turn a blind eye?

Carl Tuttle
Hudson, NH
NOV 25, 2018 —
Second email to Secretary Azar:

——- Original Message ———-
From: Carl Tuttle <runagain@comcast.net>
To: Alex.Azar@HHS.GOV
Cc: tickbornedisease@hhs.gov, csears@jhmi.edu, jaucott2@jhmi.edu
Date: November 24, 2018 at 9:14 AM
Subject: Re: Letter sent by IDSA president, Cynthia Sears, MD

Dear Secretary Azar,

I am spokesperson for the 70,000 individuals calling for a congressional investigation into the mishandling of Lyme disease here in the United States. All of these people signing the petition are given an opportunity to leave a comment so I am providing nine randomly selected comments below from the thousand page PDF which you can download from my personal Dropbox storage area: https://www.dropbox.com/s/78h1ubwkltm0w0e/petition_comments_November%202018.pdf?dl=0

Public outcry over the severity of Lyme disease has been ignored for decades while our health officials have been bamboozled by a handful of academics and the Infectious Diseases Society of America all named in a racketeering lawsuit. The U.S. Centers for Disease Control has aligned itself with these defendants involved in the brainwashing of our medical community and general public while focusing on the acute stage of disease after bulls-eye rash. Untreated/misdiagnosed Lyme is horribly, horribly disabling with no known short term treatment.

Not all IDSA members agree with the dogma/propaganda promoted by the society.  Dr. Sam Donta was a founding member of the IDSA and spent a career studying Lyme disease at BU School of Medicine. He was removed from the panel that revised the 2006 IDSA treatment guidelines because of his belief and experience with chronic Lyme disease.

As more and more citizens become disabled from this runaway plague it is only a matter of time before a full investigation is launched. These emails (whether you respond or not) will be submitted as evidence that public outcry was ignored over propaganda/dogma.

Here are nine randomly selected comments from horribly disabled Lyme patients across America.

Will you continue to turn a blind eye?

Comments:
1. My 16 year old daughter has late stage, neurological Lyme Disease. I have watch over the past several years as she has had to give up so much. She has stopped playing sports (basketball, soccer, and softball), dancing, eating many different foods, going to school, and even just spending time with friends. We have been to many different doctors with many different specialties looking for answers and have finally received a clinical diagnosis of Lyme Disease from two doctors who are working together to try to help her. The challenge now is to get her strong enough to endure the treatment that she is facing. We are told it may take years of treatment to get her to a reasonable quality of life. It is devastating to see my daughter struggle with all of this at a time when her friends are enjoy things like prom, graduations, and even just youth group activities while she sits at home suffering. This is a terrible disease!
Catherine Weakley, Virginia Beach, VA

2. My best friend’s life has been devastated by Lyme Disease for the last several years. If only her doctors had taken her concerns and symptoms seriously in the beginning and administered the proper tests, she may not have gone through so many years of pain. I accompanied her to these appointments and watched first hand as her symptoms were ignored and mis diagnosed over and over again. She has gone through years of suffering that could have been prevented had she been diagnosed at the start and given antibiotics. For the sake of her and the many others who are suffering needlessly I urge you to investigate this matter fully and support education, awareness, acceptance and action throughout the medical community.
Samantha Erin Barragar, Malibu, CA

3. I have been suffering from Neurological Lyme Disease since I was 15 years old. A year and a half ago, I had a serious flare up that has left me disabled with seizures, tremors, cognitive issues, immobility, and chronic pain. The severity of this disease should not be overlooked, and warrants significant research. The outdated and immoral IDSA guidelines must be investigated for the sake of all current and future persons infected with Lyme. Our voices deserve to be heard!
caren dandeo, Middletown, NJ

4. I’m positive for lyme and co infections and was getting better with treatment, then insurance stopped paying. I’m wheelchair bound now and cannot stand, move, or take care of myself. United HealthCare cited the CDC guidelines of 28 days of antibiotics of treatment. THAT’S NOT ENOUGH.
Doug Frenz, Hudson, OH

5. I’m only 20 years old and I’ve suffered from Lyme Disease for the past 6 years of my life. For the first few years of my disease I went undiagnosed; doctors would tell me I was crazy, and I continued to get sicker and sicker. My 15 year old sister is also really sick with Lyme and has been for years. It breaks my heart. There has to be something serious done about this epidemic, and fast.
Niki Mitchell, Binghamton, NY, NY

6. My 4 Lyme tests came back “negative” according to my PCP’s. I was “negative” for 8 years while I did indeed have Lyme. When I visited 2 LLMD’s they both verified that I had Lyme. Had it been caught 8 years prior it could have been cured. Instead, it spread to all parts of my body and brain. I in turn became a burden on the healthcare system and lost all of my assets. Accurate testing MUST be developed!
Serenaty S, New York, NY

7. I am disabled, in a wheelchair, and currently on IV medicine to try and kill off Lyme, Babesia, and Bartonella. I am in huge debt because insurance refuses to pay for anything – not doctor visits, not medicine, nothing. Too many are sick and dying. Enough.
wendy vogt, Redwood City, CA

8. My husband has been diagnosed with neurological lyme and the coinfections of bartonella and babesia. We spent years going form doctor to doctor trying to find out what he has. His illness reached the point where he is no longer able to work. Our insurance company will not approve the IV antibiotics he needs to get better due to the current CDC guidelines. The illness does not just affect the patient but the entire family. Lyme needs to be addressed.
Kathy Wilder Bichler, Fair Lawn, NJ

9. Spent over $100,000 dollars to get our son well in Oklahoma. 21 doctors would not recognize Lyme disease because of ignorance. We went out of state to find a LLMD. It is an awful disease and in so many ways. His Lyme test only had one band positive so according to the CDC is not proof of Lyme. Well wrong…he was pulled 5 ticks off himself and 3 days later severally I’ll for the next 2 1/2 years of being homebound. We where lucky we had a savings but I took our retirement money.
Diana Clock, Bixby, OK

Sincerely,

Carl Tuttle
Lyme Endemic Hudson, NH

Category:

Activism, Lyme

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