Archive for the ‘Lyme’ Category

The Need For An Alternative to Current Antibody-Based Lyme Disease Diagnostic Tests

https://globallymealliance.org/the-need-for-an-alternative-to-current-antibody-based-lyme-disease-diagnostic-tests/

by Timothy J. Sellati, Ph.D., Chief Scientific Officer, Global Lyme Alliance

An early and accurate test result is critical to effectively treat most diseases. Especially Lyme disease. The earlier one is diagnosed and treated, the better the odds are for recovery. Unfortunately, current Lyme disease diagnostics are highly inaccurate for early diagnosis, having a direct negative impact on patients’ health.

The most common means of laboratory diagnosis of Lyme disease is an indirect test that detects the immune response (antibodies) triggered by the presence of Borrelia burgdorferi, the causative agent of Lyme disease. The current standard two-tiered test (STTT) relies on a first-tier enzyme immunoassay (EIS), that is relatively sensitive but not extremely specific. If positive or equivocal the EIA is followed by a second-tier Western immunoblot assay, that shows improved specificity. Shortcomings associated with the STTT include missing as much as 60% of early Lyme cases due to no or low antibodies levels during the first few weeks of infection.  Moreover, the second-tier assay is technically difficult and time-consuming to perform and the results are prone to subjective interpretation resulting in both false negative and false positive results.  Beyond the tests’ limitations, detection of antibodies as a basis for diagnosis is confounded by the fact some patients may not produce antibodies against B. burgdorferi, while others will start and then stop producing them, and still others will continue to produce antibodies long after treatment and treatment/cure and resolution of symptoms.

As part of our mission to conquer Lyme disease, in 2017 Global Lyme Alliance was responsible for a report that publicly addressed the limitations of current two-tiered tests while simultaneously seeing the real potential of newer technologies to overcome many of the limitations. This finding supports GLA’s ongoing work with top researchers to develop a more accurate diagnostic test that will better serve patients and the community.

Also in 2017, GLA partnered with Ionica Sciences, a startup diagnostics company based at Cornell University’s McGovern Center life sciences incubator in Ithaca, New York, to accelerate the development of a highly sensitive direct Lyme disease diagnostic test. Called IonLymeTM, this novel testing strategy recognizes a specific bacterial protein [Outer surface protein A (OspA)] shed in minute quantities by B. burgdorferi into the bloodstream during early infection rather than waiting weeks for antibodies to be produced. OspA is thought to only be in the blood during active infection. So, IonLyme not only detects early Lyme disease much better than current solutions, it also allows testing for reinfection, and can help to determine if a person is cured of active Lyme disease.

While still in the validation phase of development Ionica Sciences has made a significant advance by demonstrating excellent diagnostic accuracy with IonLymeTM using biobanked blood samples. Currently, the assay generates statistically significant results with >90% clinical sensitivity and >95% clinical specificity. Thus, while other companies have made important strides in developing modified two-tiered tests (MTTTs), that rely on two EIAs rather than an EIA and Western immunoblot, which show increased sensitivity in diagnosing early Lyme disease, their approach is still limited by their focus on measuring antibody responses.

GLA is a strong believer that the more minds that work toward a goal, the better. Partnerships like we have with Ionica will speed the delivery of the tools and resources that will help patients, from diagnostics to treatment. If you are interested in supporting Ionica’s current endeavor and want to participate in their current fundraising campaign, click here.

Related posts:
Progress in New Ionica Sciences Lyme Disease Diagnostic Test Funded by Global Lyme Alliance
The Advantage of Public-Private Partnerships to Accelerate Progress for Patients
Global Lyme Alliance Partners with Ionica Sciences to Develop New Lyme Disease Diagnostic Test

________________________

**Comment**

Testing has been problematic from the beginning, leaving thousands upon thousands undiagnosed or misdiagnosed.

Please notice a few things:  they state here that OspA is “thought” to only be in the blood stream during active infection.  So, this is an unknown that I’m sure mainstream medicine will point out.  Secondly, I’m not aware of what stage patients are included in the biobanked blood samples.

In other words, while this is a test for acute infection (early), what stage of patients’ blood are they using for validation?

And lastly, while we desperately need accurate tests so people can get diagnosed promptly and then receive prompt treatment, this will NOT include any coinfections present and of course completely leaves out the huge subset of patients that are chronically experiencing symptoms – which also needs testing to prove their condition so they too can receive appropriate treatment.

I remain hopefully skeptical.

Category:

Lyme, research, Testing, Uncategorized

Natural SIBO Solutions For Lyme Patients

https://rawlsmd.com/health-articles/natural-sibo-solutions-for-lyme-patients-how-to-overcome-this-painful-gut-problem?

Natural SIBO Solutions for Lyme Patients | RawlsMD

Natural SIBO Solutions for Lyme Patients: How to Overcome This Painful Gut Problem

by Jenny Lelwica Buttaccio
Posted 8/21/20

Does your belly feel bloated more often than not? Is abdominal pain disrupting your life to the point where you have to curb your activities, change up the foods you eat, or trade button-up pants for stretchy ones with a comfy, elastic waistband?

If you answered “yes” to these questions, you’re not alone. However, that doesn’t mean constant bloating and an irritated digestive tract are normal, even for those of us living with chronic Lyme disease or another chronic illness. Instead, these persistent gut symptoms are a sign you may be impacted by a distressing gut problem known as small intestinal bowel overgrowth (SIBO).

To manage and heal from this condition, it’s important to have a better understanding of the factors that foster SIBO, the inner working of your digestive tract, and how the balance of microbes in your body can be tipped from having mostly microorganisms that typically aid in digestion to favoring those that cause an onslaught of symptoms. Here’s what you need to know to restore a healthy gut and get your life back again.

SIBO, Defined

Your gut or gastrointestinal (GI) tract — which consists of the mouth, esophagus, stomach, pancreas, liver, gallbladder, small intestine, colon, and rectum — is home to trillions of microbes known as the microbiome, most of which are bacteria. Bacterial microflora can be beneficial to you because they aid in such functions as digesting food, enhancing immunity, and managing inflammation.

When good bacteria reside in the right locations of your GI tract, you’ll likely have a relatively easy digestive process that you may not even have to think twice about. But if you have an overgrowth of bacteria specifically in the small intestine, conditions are hospitable for the development of SIBO and subsequent disrupted digestion.

Intestinal bacteria, Gut flora

The small intestine is the place where your digestive juices break down the food you consume. From there, nutrients and minerals are absorbed through your gut walls into your bloodstream and delivered to your body’s tissues.

Typically, the small intestine contains very few bacteria because your stomach acid and the speed with which substances move through the small intestine make it an unwelcome environment for most microbes to survive. But there are some exceptions.

“People who have gut dysfunction like SIBO usually have poor gut motility,” says Dr. Bill Rawls, Medical Director of RawlsMD and Vital Plan. “That means that food is slow to make its way through the digestive tract, so it sits in the small intestine where it ferments, produces gas, and irritates the gut.” In short, the inability of food to move swiftly through the GI tract, combined with low concentrations of stomach acids, creates a hotbed for myriad bacteria to flourish.

Unfortunately, in a world filled with gut disruptors like high-carbohydrate foods and acid-reducing stomach medications like Tums or Pepcid, SIBO may be more common than many people realize. However, all roads lead back to the health of your immune system: “If your immune system is disrupted, you’re going to have less ability to keep the microbes in the small intestine or elsewhere in the gut in check,” says Dr. Rawls.

Let’s take a look at some of the symptoms, causes, and natural solutions to improve and alleviate SIBO and support your immune system.

Symptoms of SIBO

The symptoms of SIBO tend to be similar to those experienced with irritable bowel syndrome (IBS). In fact, bacterial overgrowth in the small intestine may be the cause of IBS in some individuals. However, not everyone who has IBS has SIBO and vice versa, suggests a review in the journal Gut and Liver. Estimates vary widely, with anywhere between 4% and 78% of people with IBS also having SIBO.

woman curled up in bed, holding stomach, stomach pain

The biggest symptoms that are attributed to SIBO are gas, bloating, and abdominal pain. The reason? “When bacteria in the small intestine ferments, there’s really nowhere for that air or gas to go, so it becomes trapped, causing intense pressure in your belly,” says Dr. Rawls. “It takes a long time for that gas to get out. Meanwhile, it causes cramping and discomfort.”

The list of top symptoms that might occur as a result of SIBO include:

  • Gas
  • Bloating
  • Abdominal pain
  • Diarrhea
  • Constipation
  • Feeling full
  • Decreased appetite
  • Nausea
  • Fatigue

In more severe cases, SIBO could result in involuntarily weight loss, anemia, or malnutrition.

Causes of SIBO

The three main contributors to SIBO are gastrointestinal dysfunction, low stomach acid production, and poor gut motility, says Dr. Rawls.

“Gastric dysfunction starts in the stomach, and if you don’t have good acid production, you’ll have poor digestion and an ample supply of undigested food to fuel the bacteria in your small intestine,” says Dr. Rawls. Structural issues, like those caused by intestinal scar tissue or diverticulosis (when small, bulging pouches form in the lining of the digestive tract), certainly contribute to gut dysfunction, as do autoimmune diseases such as Crohn’s disease, celiac, and multiple sclerosis.

Slow motility — originating from factors like vitamin deficiencies, medication side effects, and inflammation — along with eating high-carbohydrate and processed foods are chief offenders as well, says Dr. Rawls. Essentially, motility problems hinder digestion, while processed foods feed the bacterial overgrowth.

woman analyzing pills and instructions while laying in bed

Also, if you’ve taken antibiotics for Lyme disease, you may be wondering how likely they are to cause SIBO. Yes, antibiotics disrupt your microbiome’s flora, says Dr. Rawls, but it’s not the only driving agent. Other things that perpetuate gut dysfunction include chronic stress, poor sleep, immune dysfunction, as well as the compromised gut flora and highly-processed dietary considerations already mentioned. In short, it’s often difficult to pinpoint an exact cause for SIBO because there are a multitude of factors that affect gut health.

How to Test for SIBO

An evaluation for SIBO may involve breath or fluid testing. However, testing runs the risk of not being very reliable.

“I’ve found evaluating the symptoms to be most useful,” says Dr. Rawls. “If your belly is taut like a drum, and you have all kinds of cramping, you probably have SIBO.” However, if you’re not able to get a proper diagnosis, or if treatment isn’t producing positive outcomes, testing might be a logical step.

Typical SIBO tests include:

  • Breath test: This test is non-invasive and measures the amount of gas — such as hydrogen or methane — that you exhale after consuming a sugar-water solution. An increase in hydrogen or methane could be indicative of SIBO, though the test lacks some specificity for bacterial overgrowth.
  • Small intestinal aspirate: A sample of fluid is obtained from your small intestine by inserting a tube down your throat and maneuvering it through the upper portion of your digestive tract. Then, the fluid sample is cultured in a lab to watch for the growth of bacteria. There’s a chance this test could yield false positive results in some people, but it is indicated as the gold standard for SIBO testing. However, because of the invasive and expensive nature of it, the breath test is quickly becoming a popular alternative.
Natural Ways to Improve SIBO

There are a variety of natural tools to manage SIBO while also — and most importantly — working to address the underlying causes. It’s crucial to do these two things simultaneously, because the problem will likely come back if you choose an intervention that focuses solely on symptom management.

That’s why the primary conventional treatment for SIBO — antibiotics — really isn’t a great solution. Yes, antibiotics might help decrease the number of bacteria in your small intestine, but they don’t address the underlying reasons for bacteria being there in the first place. And once you stop taking the antibiotics, bacteria will make their way back to the small intestine and continue stirring up painful symptoms if you haven’t dealt with root causes.

While you can’t eradicate every threat to your digestive system, you can work to implement strategies that foster the health of your microbiome and immune system, curtail fuel sources to harmful bacteria, and decrease gut irritation. Luckily, with the right combination of diet, lifestyle modifications, and some herbal therapies, you can combat the discomfort associated with SIBO and restore your overall gut health.

1. Take Gut-Supporting Herbs and Foods.

“When trying to recover from SIBO, it’s important to enhance gut motility and digestion,” says Dr. Rawls. Notably, herbal therapy is well suited for this task, because plants have a variety of built-in antimicrobial, antioxidant, and detoxifyingqualities that support the health of your microbiome by shifting the balance in favor of beneficial microorganisms. Additionally, herbs help to normalize immune function, keeping gut microbes in check and managing unpleasant symptoms.

picture split in grid. berberine, dandelion, bitters, ashwagandha, apple cider vinegar

Dr. Rawls’ preferences for herbal therapy for the gut are as follows:

  • Berberine: As an excellent antimicrobial herb, berberine helps knock back pathogens throughout the small intestine and the digestive tract. Found in the stems, bark, roots, and rhizomes of a range of herbs, berberine helps to soothe irritated intestines and normalize bowel movements.
  • Bitters: Bitter herbs stimulate the production of saliva, enzymes, and bile we need for motility and gut function. Bitters that promote digestion include burdock, dandelion, fennel, and ginger. Fresh bitter herbs can make an excellent addition to salads and cooked dishes. However, the herbs are typically available in combination in many digestive support supplements as well.
  • Ashwagandha: This adaptogenic herb has antimicrobial, anti-inflammatory, and immunomodulating properties. Ashwagandha has been used as a medicinal herb in traditional Indian and African medicine for thousands of years. One of the reasons for its appeal is that it’s a multi-use herb that reinforces your resistance to stress, allowing you to cope with stressful circumstances and get a better night’s sleep — two areas of concern that are essential to address healing from SIBO.
  • Hydrochloric Acid (HCL): The less stomach acid you produce, the more trouble you’ll have digesting your food. A supplement containing HCL can be a cost-effective way to augment normal gastric activity and break down your food.
  • Apple Cider Vinegar (ACV): Taken at mealtime, ACV increases the stomach’s acidity for better digestion. ACV contains acetic acid, an antimicrobial agent that may be effective at quelling pathogenic microbes in the gut and reducing inflammation. However, the taste of ACV can be a bit shocking. To make it more palatable, Dr. Rawls recommends consuming 2 tablespoons of ACV in 6 ounces of water with a drizzle of honey.
2. Cook Your Food.

When SIBO (or chronic Lyme!) symptoms flare and you’re uncomfortable or in pain, toiling away in the kitchen over a hot stove might seem like the last activity on your mind. But eating cooked food gives your body a head start on digesting meals, allowing your gut more time to heal and repair.

To make cooking a less stressful part of your day, be sure to stock up on healthy staples (think: quality proteins, vegetables and greens, and healthy fats), have a go-to meal handy for your most challenging days, and prepare in bulk whenever possible. All it takes is a few simple tricks to make cooking a more pleasant experience for you.

3. Reduce Your Eating Window.

Digesting food places significant energy demands on your body. If your eating schedule is such that you’re grazing or snacking throughout the day, you’re not giving your irritated digestive tract a break and might be aggravating SIBO.

antique clock on white plate, beside for and knife

“Reducing your eating window and trying to eat less often prevents your small intestine from being inundated with more bacteria, and it allows time for it to empty, take a break, and starve the bacteria of the nutrients they need to flourish,” says Dr. Rawls.

To give your gut ample time to rest, Dr. Rawls recommends a 12- to 16-hour window without consuming food, a method similar to intermittent fasting or mini-fasting. For example, eating all of your meals between 10 am and 6 pm would allow you to have a window of 16 hours where your body can work on digesting the contents of the day and empty the small intestine. A schedule of 7 am to 7 pm would give your body 12 hours to complete the act.

However, a rigid schedule isn’t going to work for everyone, and if you’re really ill, you may not tolerate altering your eating times until you’re further along in your healing. “If you can keep your window at 12 to 16 hours, that would be great. But you have to find what works best for you,” suggest Dr. Rawls. “You have to enjoy life.”

4. Make Time for Sleep.

Sleep is a vital step to improving gut motility, normalizing immune function, and recovering from SIBO. The digestive process takes 6 to 8 hours to move food from the stomach through your small intestine. Therefore, the later you eat, the more your body will divert resources to the process of digestion late into the night, and all that activity can keep you awake.

But it’s also a catch-22: “If you have bad sleep, your body won’t be able to do what it needs to do, including facilitating the digestive process,” says Dr. Rawls.

woman asleep in bed, dark room

So how do you improve your sleep? In addition to reducing your eating window, the following sleep hacks can help:

  • Stick to a sleep schedule, so your body learns the rhythms of day and night.
  • Avoid using electronic devices after 9 pm to cut down on your exposure to stimulating blue light that can interrupt your ability to produce melatonin.
  • Tone down your nervous system and prepare for sleep by doing a calming activity such as gentle yoga, a warm bath, or breathing exercises.
  • Maintain a cool temperature in your bedroom — 67° to 72° is usually conducive to sleep for most people.
  • Wear a sleep mask to block out excess light that can keep you awake at night.

Though SIBO resides in the small intestine, it takes a whole-body approach to care for your gut. “Healing depends on getting things moving again, enhancing digestion, and restoring healthy immune function,” says Dr. Rawls. Support your gut and overall health with soothing herbs, cooking your food, reducing your eating window, and getting enough sleep to jumpstart your recovery.

Dr. Rawls is a physician who overcame Lyme disease through natural herbal therapy. You can learn more about Lyme disease in Dr. Rawls’ new best selling book, Unlocking Lyme.
You can also learn about Dr. Rawls’ personal journey in overcoming Lyme disease and fibromyalgia in his popular blog post, My Chronic Lyme Journey.

REFERENCES
1. Dukowicz AC, Lacy BE, Levine GM. Small intestinal bacterial overgrowth: a comprehensive review. Gastroenterol Hepatol (N Y). 2007;3(2):112-122.
2. Ghoshal UC, Shukla R, Ghoshal U. Small Intestinal Bacterial Overgrowth and Irritable Bowel Syndrome: A Bridge between Functional Organic Dichotomy. Gut Liver. 2017;11(2):196-208. doi: 10.5009/gnl16126
3. Rubio-Tapia A, Barton SH, Rosenblatt JE, Murray JA. Prevalence of small intestine bacterial overgrowth diagnosed by quantitative culture of intestinal aspirate in celiac disease. J Clin Gastroenterol. 2009;43(2):157-161. doi: 10.1097/MCG.0b013e3181557e67
4. Small intestine aspirate and culture. MedlinePlus website. https://medlineplus.gov/ency/article/003731.htm#:~:text=A%20sample%20of%20fluid%20from,of%20bacteria%20or%20other%20organisms.

 

Category:

Gut Health, Lyme, Uncategorized

62% Adult Taiga Ticks Found With Borrelia spp. in Finland

https://pubmed.ncbi.nlm.nih.gov/32727555/

. 2020 Jul 29;13(1):384.

doi: 10.1186/s13071-020-04259-z.

Questing abundance of adult taiga ticks Ixodes persulcatus and their Borrelia prevalence at the north-western part of their distribution

Veli-Matti Pakanen 1 2, Jani J Sormunen 3, Ella Sippola 4, Donald Blomqvist 5, Eva R Kallio 6

Abstract

Background: Because ixodid ticks are vectors of zoonotic pathogens, including Borrelia, information of their abundance, seasonal variation in questing behaviour and pathogen prevalence is important for human health. As ticks are invading new areas northwards, information from these new areas are needed. Taiga tick (Ixodes persulcatus) populations have been recently found at Bothnian Bay, Finland. We assessed seasonal variation in questing abundance of ticks and their pathogen prevalence in coastal deciduous forests near the city of Oulu (latitudes 64-65°) in 2019.

Methods: We sampled ticks from May until September by cloth dragging 100 meters once a month at eight study sites. We calculated a density index (individuals/100 m2) to assess seasonal variation. Samples were screened for Borrelia burgdorferi (sensu lato) (including B. afzelii, B. garinii, B. burgdorferi (sensu stricto) and B. valaisana), Borrelia miyamotoi, Anaplasma phagocytophilum, Rickettsia spp., Neoehrlichia mikurensis, Francisella tularensis and Bartonella spp., Babesia spp. and for the tick-borne encephalitis virus.

Results: All except one nymph were identified as I. persulcatus. The number of questing adults showed a strong peak in May (median: 6.5 adults/100 m2), which is among the highest values reported in northern Europe, and potentially indicates a large population size. After May, the number of questing adults declined steadily with few adults still sampled in August. Nymphs were present from May until September.

  • We found a striking prevalence of Borrelia spp. in adults (62%) and nymphs (40%)
  • B. garinii (51%) and B. afzelii (63%) being the most common species
  • 26% of infected adults were coinfected with at least two Borrelia genospecies, mainly B. garinii and B. afzelii, which are associated with different host species

Conclusions: The coastal forest environments at Bothnian Bay seem to provide favourable environments for I. persulcatus and the spread of Borrelia. High tick abundance, a low diversity of the host community and similar host use among larvae and nymphs likely explain the high Borrelia prevalence and coinfection rate. Research on the infestation of the hosts that quantifies the temporal dynamics of immature life stages would reveal important aspects of pathogen circulation in these tick populations.

__________________

**Comment**

Yes, humans are hosts for Taiga ticks.

There is a misnomer in this article:  “As ticks are invading new areas northwards....”  This false narrative tries to make tick movement and disease proliferation a climate issue, when it’s not.

This makes it sound as if ticks are ONLY invading new areas to the North.  They are also invading new areas in the South (and everywhere else for that matter) and all of this despite the weather.  

For More:  https://madisonarealymesupportgroup.com/2019/06/17/ontario-public-health-officials-called-out-on-shoddy-biased-research-utilizing-an-erroneous-climate-change-model-to-program-a-futuristic-tick-problem/

https://madisonarealymesupportgroup.com/2018/11/07/ticks-on-the-move-due-to-migrating-birds-and-photoperiod-not-climate-change/

Category:

Lyme, research, Ticks

Department of Health: Lyme Disease, COVID-19 Share Symptoms

https://www.dailyitem.com/news/local_news/department-of-health-lyme-disease-covid-19-share-symptoms/

Department of Health: Lyme disease, COVID-19 share symptoms

By Justin Strawser jstrawser@dailyitem.com

Department of Health: Lyme disease, COVID-19 share symptoms
Robert Inglis/The Daily Item Ronald Keister of Laurelton recently contracted Lyme disease from a tick bite.
Ronald Keister late last month started feeling muscle and joint aches and developed a low-grade fever, making him wonder if he somehow contracted COVID-19.
The Laurelton resident, worried that his wife who has health problems was in danger, called his doctor to ask if he should be tested for the novel coronavirus. He was told to wait two days to see if the fever would go up; in the meantime, he and his wife noticed a big red welt on his shoulder. Keister had Lyme disease.
“We have woods out back, and I’m out there all the time,” said Keister. “I’ve had ticks before, and had no problems. I never saw the tick on this one.”

The state Department of Health last month put out a media release reminding Pennsylvanians to take proper steps to prevent tick bites and recognize the symptoms of Lyme disease, as some symptoms of Lyme disease are similar to those of COVID-19. Ticks can carry Lyme disease, among other dangerous diseases, that can be severe if not treated properly. (See link for article) 

___________________

For more:  https://madisonarealymesupportgroup.com/2020/05/30/a-tale-of-two-pandemics-lyme-covid-19-dr-bransfield/

https://madisonarealymesupportgroup.com/2020/07/11/the-disease-thats-mistaken-for-covid-19/

https://madisonarealymesupportgroup.com/2020/07/02/lyme-disease-symptoms-could-be-mistaken-for-covid-19-with-serious-consequences/

https://madisonarealymesupportgroup.com/2020/08/15/overlooked-lyme-disease-symptoms-sometimes-confused-for-covid-19/

https://madisonarealymesupportgroup.com/2020/08/03/is-it-coronavirus-or-lyme-disease-similar-symptoms-could-create-confusion/?

https://madisonarealymesupportgroup.com/2020/06/09/upstate-residents-seeing-a-tick-bite-illness-that-resembles-coronavirus/

https://madisonarealymesupportgroup.com/2020/08/01/as-symptoms-mirror-coronavirus-granville-family-warns-of-ticks-lyme-disease-threat/

https://madisonarealymesupportgroup.com/2020/07/17/tick-disease-with-coronavirus-like-symptoms-is-on-a-rise-in-michigan/?

Category:

Lyme, Viruses

The Lyme Voices You Didn’t Hear at TBDWG Meeting

https://globallymealliance.org/the-lyme-voices-you-didnt-hear-at-tbdwg-meeting/

The Tick-borne Disease Working Group (TBDWG) issued a public request to hear from patients willing to share their stories for its July 8, 2020 meeting. It’s an important part of these meetings, where the public and the TBDWG members can hear directly from patients, to better understand the dire need for answers and results.

Four of Global Lyme Alliance’s Educational Ambassadors submitted their public comments for this meeting. We’d like to highlight their stories and share them with you now. Below are the unedited submissions from Lyme patients Fawna Bough, Rhonda Howdyshell, Jen Kenley, and Robin Reich.

FAWNA BOUGH

My name is Fawna Bough and I have struggled with tickborne diseases (Lyme, Babesia, Bartonella, Ehrlichiosis) for at least 14 years. I struggled for years to get a diagnosis which finally came in 2015. Since then I have been battling these tickborne diseases–most of which the costs have been solely my burden to bear as my insurance refuses to pay for most of the treatments, and my doctor appointments, related to my illness.  I have spent 10s of 1000s of dollars fighting this disease. The financial burden has changed most every plan I had for my life and retirement. I had to retire early from a job that I loved, realized that most of my family and friends thought I was a hypochondriac as I watched them distance themselves from me, and I continue to fight these diseases on a daily basis.

This disease brought me to my knees and almost took my life. I have heart and neurological involvement, have been bedridden, have permanent muscle damage, the list goes on and on… and I still struggle with mobility from time to time. These diseases have disrupted my immune system so much that I have now progressed into other issues i.e. POTS, Reynauds, etc. I will also share that these diseases have sadly changed me from the inside out. My personality morphed into a person that I literally did not recognize and I’m still trying to get myself back.  The neurological suffering of patients like myself is simply indescribable.

I am grateful that the Tick-Borne Disease Working Group is allowing TBD victims to voice their comments as this disease changes the trajectory of your life in every way possible. The barriers that are currently in place that discard us as patients need to be removed quickly and permanently.  There have been a variety of treatments that have been prescribed to me to help me heal; however, because of my diagnosis of TBD, my insurance will not approve those treatments due to their claim that chronic TBD does not exist and/or because the treatments that I prefer lean more toward holistic healing vs. traditional Western medicine. The treatment decisions for any disease should fall solely on the patient. There should be equality toward coverage of both holistic and traditional medicine.

I have suffered long enough, as has my fellow Lyme Warriors.  There are thousands of children that are getting TBD and not being diagnosed and these kids are being set up for a lifetime of suffering.  We have NO RELIABLE TESTING.  We have NO CURE.  Please help us gain equality in treatments.  Please help us.

Thank you for your time and consideration.

Fawna Bough
GLA Education Ambassador, Illinois

RHONDA HOWDYSHELL

Just last week another doctor shared with me that it wasn’t possible to have advanced or undiagnosed Lyme Disease. Find that contrary to my own experience. I was only 8 years old growing up in Northern Virginia when my family thought sending me to camp in the Shenandoah Valley for 6 weeks would be a wonderful adventure! It was horseback riding, pond swimming, hiking, and outdoor showers and privies were all part of my summer adventure! Then one day a counselor was helping to brush and braid my hair when they found an engorged and embedded tick in my hair. It was a big deal and the nurse had to remove it, using a match to burn and make it come off. When I came down with a disseminated rash a while later—they quarantined me with measles. It was determined later it wasn’t measles. My later childhood was marked by allergy issues that had me on antibiotics often. Later I developed a strange blood disorder where I would bruise and bleed upon the slightest bump.

I moved to the Shenandoah Valley in 1979. Ticks were commonplace. Most symptoms Drs and I wrote off to getting older. including thyroid disorder, skin mottling, confirmed arthritis (suspected RA) in my hands and feet, and joint deterioration in my hip that required a replacement to walk.

I retired at 62 early, as the cumulative deterioration was making work very difficult. The next spring I found a tick attached to my chest. I had no bulls-eye, it was only on 8-10 hours. The subsequent flu, neck pain, and facial paralysis didn’t give me a clue. but a migrans rash that appeared on my calf sent me to the doctor and they diagnosed Lyme based on symptoms (note no blood test was administered! Which means the health dept/CDC didn’t have to count the case as confirmed Lyme). The speaking difficulty (not being able to remember words) and cognitive disfunction got more severe. (Like writing this account would have been impossible.). They gave me 14 days of doxycycline. Cured… NO, so I tried to accept my new normal of no energy, cognitive lapses, and arthritis throughout my body as my lot in life.

Then a friend suggested an LLMD doctor and I went to one near me. The blood tests were done and I tested “wildly positive” for Lyme. Treatment of 28 days of Doxy began and I felt some better. Then a course of two antibiotics followed. The treatment was harsh and I was sick (Herxing) daily on it. But still, I felt 60% better and I was grateful. Then I showed the LLMD the massive bruises on my legs and arms (had this since childhood) and a sore that wasn’t healing. Diagnosis? Secondary Lyme infection .. and this time the doctor tried a new trial – the WEIGMAN protocol. I remember it was just before Christmas and I decided to wait until after the holiday and I was tired of being sick every day from the meds. The protocol was cheap and effective, It gave me back my life.! It was a pulsed Mindi / Tindi antibiotic that has proven studies that show a complete kill of spirochetes over others that foster the formation of round cysts. (you know the ones that hatch out after the antibiotic cure and then multiply so you stay sick). It included boosting the immune system before starting it, to allow your body to fight along with the meds.

So my advice is:

  1. Change the CDC recommended 14-28 day doxycycline treatment to Weigman Protocol.
  2. Recognize that Lyme disease not addressed or under-treated will resurface when your body allows the remaining spirochetes to multiply.
  3. Encourage doctors to think “advanced” Lyme disease when seeing a patient with disseminated migrans rash, joint pain, thyroid disorders, MS, Parkinson like symptoms, and temperature of 97.
  4. Order health departments to count all cases of diagnosed Lyme even without a blood test (you see the test is so unreliable docs aren’t bothering to do it) – so we have no idea the number of cases. Keep in mind over a million dogs are diagnosed every year in the US.

Rhonda Howdyshell
GLA Education Ambassador, Virginia

JEN KENLEY

As a patient with Lyme disease, and an Ambassador for the Global Lyme Alliance, it is difficult to put into tangible words what I want to convey to your team. The Lyme community just lost one of our greatest advocates this past week (as of June 24th), Dr. Neil Spector. Following your last meeting, I know that I speak for many Lyme patients when I say that we are deflated, crushed, and incensed by things that were said.  Most pointedly at the disregard for two million lives (“Post Treatment Lyme Disease” patients) in refusing to update the CDC’s treatment guidelines. The CDC’s guidelines have and continue to fail the Lyme community shamefully.  I know this personally, I have done the CDC’s advises Doxycycline regimen and am left with almost no immune system (after years of “PTLD”), terrible arthritis, ongoing night sweats, heart abnormalities and debilitating brain fog and loss of memory.  I am 33 years old, crying over my 5-year-old son at night because there is nothing else that can be done for me because of the “guidelines” in place. In September we had to sell our house to pay medical debts, because again, thanks to the CDC’s guidelines my continued treatment is not covered by insurance.  There have been NUMEROUS studies indicating that Lyme disease can hide in the joints and that people are affected for years despite these Doxycycline doses (Please see Tulane and John Hopkins studies). Many suggest a three-antibiotic cocktail and others, like Dr. Sapi (New Haven) propose enzymes and drugs to break down biofilms in remaining bacteria to enhance antibiotics.  To be completely candid, myself and a lot of others in the Tick / Vector-Borne Disease community have lost faith in the ability of this group to make empathetic, fact-based decisions following this past meeting. With Lyme now in all 50 states and enough PTLD patients to fill the city of Chicago, we can no longer be ignored.  We are pleading with every one of you to revisit and amend the CDC guidelines. For those unwilling to bend, please put aside your conflicts of interest and stand on the side of history that fights for humanity.

My life (and my 5 year old’s) is (are) in your hands.

Jen Kenley
GLA Education Ambassador, Tennessee

ROBIN REICH

I need HELP in the Orlando Florida area… Will a doctor please message me if willing and able to assist me with this Babesia created with Lyme Disease. I have had it too long now…..and I am frightened. I want to live a wholesome life as best I can and I can not find a doctor who is legally able to treat me past the 21 days IV antibiotic treatment. Unless I PAY CASH. Also, is an Infectious Disease doctor LEGALLY ABLE to take care of patients for this (Babesia/Lyme) yet past the 21 day IV antibiotics? If so, who? I am having a very difficult time trying to find a doctor who will treat me past 21-day treatment and is able to use my health insurance coverage of any kind. I am going on 5 years with the exact symptoms of Babesia after having been treated for Lyme Disease with an integrative and natural medicine doctor who was guided by Dr. Richard Horotwiz’s books out of NY. The book entails details and treatments of my disease(s) to the T. I have gone to ANOTHER 2 local infectious doctors here in Orlando, Florida who say they DO NOT treat Lyme Disease. This is SURREAL at this day and age … I don’t have $$$ thousands of dollars to treat myself at [redacted] doctors … Sadly, I can buy a gun but I can not use my $384.00 a month Health Insurance to treat my disease when there ARE treatment options available out there, but only for cash … or am I severely missing something here?

Also, I’m on the backstretch of this thing or things/diseases Lyme or and Babesia…And I am already in debt from treating basic Lyme … 2 years unable to work (I only made six figures). And yes I have the credit cards I am paying off for that paid for treatment and or living without being able to work … I am a strong person and I insist on working again … I am working … willing to work … never took charity … have health insurance and yet … there ARE solutions out there … documented … but I need large amounts of cash to use them.

Maybe I will try this angle … Who has about $5,000 to $20,000 to give me to travel and treat my disease because of the Health MR. OZ’s of our world do not believe Insurance should pay for treatments found for my illness???? Please message me … I will keep all receipts to assure you that that is where the money will go … And I am an organ donor so science can study this mess … But … GOD BLESS AMERICA there are options out there but I have to be wealthy in order to use them!!

I am going on 10 years since my positive Western Blot diagnosis of Lyme Disease… and I do realize Babesia is a co-infection… However, I am currently treating myself -no doctor supervision. Because I choose to pay my mortgage … and possibly die in my own house without legal professional treatment versus moving into a tent because I had to pay CASH for the treatment … I am not sure if the “Samsara Herbs TICK Immune Support” will treat Babesia or only Lyme Disease … I started to lightly herx after 2 days so it’s doing something. Herx symptoms include morning headaches, eye inflammation/blurry, sweating, anxiety, neuropathy on the entire left side and is now agitated with tingling hot/cold increases. Or…. are these Herbs bringing the Lyme symptoms back that went into hiding versus KILLING these miniature beasts??

Who or where do I go for help? My mind has become boggled or continues to stay fogged with all the internet info and NO SOLID covered health insurance doctors who can legally treat me.

Robin Reich
GLA Education Ambassador, Florida

_____________________

**Comment**

I share our story here, which serves as a perfect example of how two infected people achieved their health back with extended, varied, and many antimicrobials.

But patient experience, doctor experience and worldwide, Peer-Reviewed Evidence of Persistence of Lyme:MSIDS copy just doesn’t matter to The Cabal, just as the truth about COVID and mounting reports on the experimental, fast-tracked, dangerous COVID injections causing serious harm and death doesn’t matter to them.

These ‘authorities’ are riddled with conflicts of interest and should not direct public health.

 

Category:

Activism, Lyme