Archive for the ‘Lyme’ Category

Overcoming Lyme Disease GI Issues

https://globallymealliance.org/overcoming-lyme-disease-gi-issues-with-kate-farms/

by Christina Kovacs

PATIENTS WHO HAVE LATE DISSEMINATED (POST-TREATMENT, CHRONIC, OR NEUROLOGICAL) LYME ARE USUALLY TOLD TO REDUCE FOODS THAT CAUSE INFLAMMATION OR SENSITIVITY. THIS MEANS ELIMINATING GLUTEN, SOY, AND DAIRY.

Lyme Disease is known as ‘The Great Imitator’ because it has the unique ability to create a range of body-wide symptoms—muscular, neurological and endocrine among them—which can appear to indicate other diseases. This is why Lyme is so difficult to diagnose.

My Lyme disease symptoms first showed up as GI issues that hit me hard. I went from a thriving full-time college student to someone who spent half of her nights on the bathroom floor in a ball of pain. My stomach pains would continue to plague me for years as more mysterious aches and pains piled one on top of the other.

Before finding Kate Farms, my medical journey had many low points. In the fall of 2010, my weight plummeted to 85 pounds. I was too nauseous, too exhausted, and in too much pain to eat much of anything. I spent the next several months force-feeding myself enough to stay out of the danger zone, but the talk of hospitalization constantly followed me around.

Force-feeding was a short-term solution as my weight dropped again, this time to 88 pounds, in the spring of 2012. At this point, I was bed-bound and too weak to start treatment for my now diagnosed neurological Lyme disease. From that point on I would yo-yo between being in a scary low weight zone to just barely managing to pull myself into the low 90-pound range in order to survive. This continued for years. I began to fear the worst.

In late 2016, I was dealt another blow when my GI issues ramped up ten-fold. I had never felt pain like that in my life. Lyme disease is known to cause such dysfunction of the immune system that it often leads to secondary autoimmune illnesses. In my case, I was diagnosed with Crohn’s disease and I had to live on a liquid diet. The trouble, though, was that I had so many food allergies and sensitivities that regular store-bought meal replacement shakes were not suitable for my needs.

I tried to make shakes at home from scratch, but they couldn’t supply the calories nor the nutrition that was needed to survive. This was the make-or-break moment when I knew that I wouldn’t make it unless I found a long-term solution, so I tirelessly searched the Internet for help. Finally, after four months of living on air, essentially, I found Kate Farms shakes, and they changed my life.

Kate Farms formulas are plant-based, so they’re made without common allergens. Moreover, they are organic, nutritionally complete, and easily digestible. The Peptide 1.5 sole-source nutrition formula gave me 500 calories per 325 milliliters, and it saved me. I lived solely on Kate Farms shakes for months while I pulled myself out of the depths of that initial Crohn’s flare. For the first time in more than seven years, I was able to hit a weight over 100 pounds and maintain it. Not only did these shakes give me the calories I desperately needed, but also renewed my energy as my body drank up the nutrition it had been lacking for so long.

Since 2017 Kate Farms has been a part of my daily life. During times when GI issues flare-up, I live solely on the shakes, but even when I can eat solid food, I still drink at least one Kate Farms shake a day because they taste great and are great for my health. I wish I knew about Kate Farms sooner and I hope that my story can lead others, just like me, in the right direction.

For a limited time, Kate Farms, in partnership with Global Lyme Alliance (GLA), is offering a special promotion. To receive a discount of 20% off your first order of any Kate Farms products, use coupon code KATEFARMS20. For every order, Kate Farms will donate 10% of sales to GLA. This offer expires on 9/16/20.

About Kate Farms:

Kate Farms was founded in 2011 when a little girl named Kate Laver was failing to thrive because she couldn’t tolerate any of the available tube feeding formulas. Her determined parents had the transformative idea to develop a better formula using the highest-quality, organic, plant-based ingredients without the synthetic ingredients and common allergens—including soy, dairy, and corn—found in traditional formulas. Today Kate is a thriving teenager and her parents and healthcare professionals are driving a movement that says tolerance is no longer the acceptable measure of effectiveness in medical nutrition.

Covered by Medicare, Medicaid, more than 2,000 private insurance plans and a growing number of WIC plans, Kate Farms is made of easily digestible pea protein, prebiotics from organic agave inulin, and a clinically effective phytonutrient blend that delivers antioxidants. Kate Farms flows easily through a feeding tube but can also be taken orally because of its great taste. Kate Farms is on formulary with many of leading children’s and adult hospital systems across the country.

*In order to advance our mission, GLA occasionally partners with brands to develop mutually-beneficial fundraising campaigns, co-branded merchandise and partnerships/sponsorships that bring the Lyme community together for the purpose of having a greater impact in the fight against Lyme disease. If you are interested in becoming a brand partner or sponsor, please email: marketing@gla.org

Opinions expressed by contributors are their own.

Christina Kovacs is an advocate and writer who runs the blog Lady of Lyme. You can find her @Ladyoflyme on Instagram, Twitter & Facebook.

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**Comment**

GI issues can be horrific – as presented here.  Interestingly, Bartonella is often a culprit and specific treatment will help or eliminate it altogether.  Often people blame the antibiotics/antimicrobials for GI issues when it’s the pathogen causing the problem.  The challenge is keeping the treatment down – which is sometimes where IV antibiotics can be helpful.  Unfortunately, ‘authorities’ have come down hard on this treatment stating it is risky, but like any other treatment/drug, risk vs benefit must be weighed.  For a great read on this:  https://madisonarealymesupportgroup.com/2017/06/23/no-bias-in-mmwr-for-any-other-infectious-disease-requiring-iv-antibiotics-except-for-lyme/

Category:

diet and nutrition, Lyme

How the CDC Uses Their Own ‘Guidelines’ To Rig the System

By Alicia Cashman, MS, Lyme patient and advocate

July 30, 2020

Recently I read an astute article by the Children’s Defense Fund which brought up many important points about COVID and children attending school in the fall. The following statement was given and should set off alarm bells with Lyme/MSIDS patients and for those of you familiar with the Lyme debacle due to its familiarity:

These new and unnecessary guidelines were instituted by the CDC in private, and without open discussion among qualified professionals that are free from conflicts of interest.  https://childrenshealthdefense.org/news/if-covid-fatalities-were-90-2-lower-how-would-you-feel-about-schools-reopening/

If I say the words, “CDC Lyme Guidelines,” every single Lyme/MSIDS patient will wince. 

That’s because these politically self-serving mandates, not guidelines, have been used for over 40 years keeping patients from diagnosis and proper treatment. And these mandates are still being used against patients.

The same CDC which is creating new COVID guidelines behind closed-doors did the same thing for Lyme disease.

In this historical piece, Pam Weintraub outlines the chronology of all the behind closed door shenanigans:  https://madisonarealymesupportgroup.com/2020/02/10/the-bitter-feud-over-lymerix/

Unlike the of loose parameters to be labeled COVID, Lyme disease has very strict CDC standards that hardly any patients meet.

The article points out a travesty that occurred at a Dearborn, Michigan conference that changed testing criteria by eliminating two borrelia proteins specific to Lyme disease which essentially resulted in many of the sickest patients no longer meeting the CDC’s already strict and arbitrary standard. The reason for this was these proteins interfered with the lucrative Lyme vaccine they were working on.

Important quote:

“The CDC said the standard was not to be used for diagnosis,” said Nick Harris, president of IgeneX, a California reference laboratory that tests for vector-borne diseases, “but they did not seem to realize how difficult they were making that choice for local physicians, who look to CDC definitions for guidance and take test results at face value – positive or negative – without reading between the lines. Without OspA or OspB to serve as markers, many of the sickest patients no longer met any diagnostic standard,” Harris says. “By excluding these patients from diagnosis, we excluded them from treatment as well.”

Other correlations between the handling of the two diseases is the hurried push for a vaccine and conflicts of interest.

Regarding the Lyme vaccine, researchers were pressured to quickly complete clinical trials so the vaccine could become approved.  Many were damaged by this vaccine:  https://madisonarealymesupportgroup.com/2018/01/28/the-secret-x-files-the-untold-history-of-the-lymerix-vaccine/

It seems history is repeating itself with a pushed COVID vaccine:  https://madisonarealymesupportgroup.com/2020/05/14/dod-hhs-award-138-million-for-project-jumpstart-rapid-usa-for-prefilled-covid-19-vaccine-syringes/  What is the likelihood there will be vaccine damage due to an experimental DNA vaccine never used before in humans which is known to induce chronic inflammation, gene mutations, DNA replication issues, autoimmune responses and activation of cancer-causing genes that is skipping important animal safety studies?

The handwriting is on the wall for anyone looking.

Regarding conflicts of interest, we learn from Weintraub that nine voting consultants on the Dearborn panel hired by the CDC had multiple patents and authorship in studies used to create the Lyme disease case definition: ConflictReport

Interestingly, we see this same thing with COVID:  https://principia-scientific.org/a-tale-of-2-drugs-deep-state-chose-money-power-over-lives/

For a painful refresher of the CDC Lyme Disease treatment guidelines:  https://www.cdc.gov/lyme/treatment/index.html  (Hint: it’s a measly 21 day course of the mono-therapy of doxycycline, despite the fact nearly every antibiotic study done to date shows relapses after treatment)

Standing in opposition to the CDC mandates is ILADS, a group of physicians who read and understand worldwide research which clearly shows prolonged illness and infection in many patients:  https://madisonarealymesupportgroup.com/2019/08/05/controversies-challenges-in-treating-lyme-other-tick-borne-diseases/

Similarly to doctors standing up to the CDC’s narrative on COVID-19 who are being maligned and censored, doctors who oppose the CDC narrative on tick-borne illness are also censored, maligned, and discredited:  

COVID:  

Compare and contrast this censorship with the treatment of those who treat Lyme/MSIDS:

Lyme:  

For more:  https://madisonarealymesupportgroup.com/2020/04/26/cdc-playbook-learning-from-lyme/

 

 

 

 

Category:

Activism, Lyme, Treatment, Viruses

Study Shows Lyme, Helicobacter Pylori, and Cytomegalovirus Are Risk Factors for All-Cause Mortality in the Elderly

https://pubmed.ncbi.nlm.nih.gov/32648237/

. 2020 Jul 9.

doi: 10.1007/s11357-020-00216-x. Online ahead of print.

Seropositivity for pathogens associated with chronic infections is a risk factor for all-cause mortality in the elderly: findings from the Memory and Morbidity in Augsburg Elderly (MEMO) Study

Marius Zeeb123, Tobias Kerrinnes3, Luka Cicin-Sain4567, Carlos A Guzman4, Wolfram Puppe578, Thomas F Schulz578, Annette Peters19, Klaus Berger10, Stefanie Castell3, André Karch11

Abstract

Immunostimulation by chronic infection has been linked to an increased risk for different non-communicable diseases, which in turn are leading causes of death in high- and middle-income countries. Thus, we investigated if a positive serostatus for pathogens responsible for common chronic infections is individually or synergistically related to reduced overall survival in community dwelling elderly. We used data of 365 individuals from the German MEMO (Memory and Morbidity in Augsburg Elderly) cohort study with a median age of 73 years at baseline and a median follow-up of 14 years. We examined the effect of a positive serostatus at baseline for the following selected pathogens associated with chronic infections on all-cause mortality with multivariable parametric survival models:

  • Helicobacter pylori
  • Borrelia burgdorferi sensu lato
  • Toxoplasma gondii
  • cytomegalovirus
  • Epstein-Barr virus
  • herpes simplex virus 1/2, and human herpesvirus 6

We found a reduced survival time in individuals with a positive serostatus for the following pathogens after adjusting for potential confounders:

  • Helicobacter pylori (accelerated failure time (AFT) – 15.92, 95% CI – 29.96; – 1.88)
  • cytomegalovirus (AFT – 22.81, 95% CI – 36.41; – 9.22)
  • Borrelia burgdorferi sensu lato (AFT – 25.25, 95% CI – 43.40; – 7.10)
The number of infectious agents an individual was seropositive for had a linear effect on all-cause mortality (AFT per additional infection – 12.42 95% CI – 18.55; – 6.30).

Our results suggest an effect of seropositivity for Helicobacter pylori, cytomegalovirus, and Borrelia burgdorferi sensu lato on all-cause mortality in older community dwelling individuals. Further research with larger cohorts and additional biomarkers is required, to assess mediators and molecular pathways of this effect.

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**Comment**

Recently I posted this article and that Cytomegalovirus, EBV, and Herpes Virus 6 has been found in those with ME/CFS:  https://madisonarealymesupportgroup.com/2020/07/23/cytomegalovirus-ebv-and-human-herpesvirus-6-infections-in-patients-with-me-cfs/

Some have been misdiagnosed with EBV but had Lyme:  https://madisonarealymesupportgroup.com/2017/04/11/diagnosed-with-ebv-had-lyme/

Dr. Waisbren, an IDSA founder and Wisconsin Doctor found that his Lyme patients often had high EBV titers:  https://madisonarealymesupportgroup.com/2017/07/09/idsa-founder-used-potent-iv-antibiotics-for-chronic-lyme/

Another important finding: The more pathogens a patient tested positive for, the higher the mortality, demonstrating that coinfected patients are sicker.

 

 

 

 

Category:

Lyme, research, Viruses

She Tested Negative For Lyme Disease. So What Was Wrong?

https://www.nytimes.com/2020/07/15/magazine/borrelia-miyamotoi-diagnosis.

Credit…Photo illustration by Ina Jang

By Lisa Sanders, M.D.

The 50-year-old physician dropped into the leather chair in her psychiatrist’s Manhattan office. Her new normal, she announced to Dr. Deborah Cabaniss, was constant fatigue.

Cabaniss noted that although her patient looked put together as usual, she could see the exhaustion in her eyes.

“You don’t look like yourself,” the therapist agreed.

The patient had seen Cabaniss for more than a decade. She valued the sessions as a chance to talk about the stresses of balancing a medical practice with the demands of family, but since a few months earlier, all the patient could talk about was how awful she felt. (See link for article)

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**Comment**

And so it goes……patient after patient after patient.

This one had intermitted fevers, ached all over, and had diarrhea.  All tests for Lyme were negative.

Telling quote:

She slept but never felt rested.

Thankfully her psychiatrist knew of Dr. Fallon of Columbia University who specializes in tick-borne illness.

And this is how most patients get help – because somebody knows somebody who knows somebody.  Should it be this hard to get medical care?

A concerning passage in the article states that a tick has to be attached for 2-3 days before Lyme can be transmitted.  This is a bunch of hooey.  Lyme has been transmitted within hours and minimum transmission time has NEVER been determined:  https://madisonarealymesupportgroup.com/2017/04/14/transmission-time-for-lymemsids-infection/

Medical professionals are not up on the latest research on ticks and this study shows that ticks often partial feed, drop off, and then reattach.  This means the Lyme spirochete can be in the salivary glands which will make transmission much quicker.  https://madisonarealymesupportgroup.com/2020/07/05/interrupted-blood-feeding-in-ticks-causes-and-consequences/

This patient ended up having B. miyamotoi, which lives in the mouth of the tick which means it can infect you almost immediately.

Another passage in the article states that joint pain caused by Lyme is usually limited to one side.  

I would be careful about such generalizations.

I kept track of my symptoms and my husband’s symptoms for over 5 years and joint pain moved around like the wind.  There are times I questioned by own sanity – it’s so bizarre & highly variable.  I do highly recommend you track your symptoms daily & write them down.  Then, try and notice trends.  I always wrote up an executive monthly summary for our doctor.  It helps them treat you accordingly.

Another concerning passage: Babesia causes anemia.  Dr. Horowitz states that Babesia is one of the most tenacious coinfections he treats and it often presents subclinically – which means it causes untold grief but doesn’t present with exact clinical standards.

Another very concerning passage: the recommended treatment is two weeks of an antibiotic called doxycycline.

Again, these generalities have been killing people.  Each case is extremely complex and individual.  Research has repeatedly shown treatment failures in nearly every antibiotic study done:  https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/  There are many reasons for this:

  1. patients aren’t treated long enough
  2. patients aren’t treated with high enough dosages
  3. patients aren’t treated for the numerous coinfections they have
  4. patients aren’t using a “cycling” approach

Lastly, this article brings up a very important point: there are many strains of borrelia that testing isn’t picking up – besides the fact antibody testing is the wrong test for this:  https://madisonarealymesupportgroup.com/2018/09/12/lyme-testing-problems-solutions/

https://madisonarealymesupportgroup.com/2020/05/27/letter-to-cdc-dr-beard-why-isnt-direct-detection-of-lyme-disease-a-priority/

https://madisonarealymesupportgroup.com/2017/12/13/suppression-of-microscopy-for-lyme-diagnostics-professor-laane/

https://madisonarealymesupportgroup.com/2018/10/13/direct-test-for-ld-carl-tuttle-chews-up-cdc-spits-them-out/

https://madisonarealymesupportgroup.com/2018/08/15/milford-pathologist-fires-broadside-at-cdc-motion-to-discuss/

 

 

 

 

 

Category:

Activism, Lyme

An Open Letter About My Health: Elena Delle Donne

https://www.theplayerstribune.com/en-us/articles/elena-delle-donne-wnba-season-lyme-disease

Elena Delle Donne

WASHINGTON MYSTICS
JUL 15 2020

I take 64 pills a day.

Sixty-four pills: That’s 25 before breakfast, another 20 after breakfast, another 10 before dinner, and another 9 before bed.

I take 64 pills a day, and I feel like it’s slowly killing me. Or if it’s not killing me, directly, then I at least know one thing for sure: It’s really bad for me. Longterm, taking that much medicine on that regular of a regimen is just straight-up bad for you. It’s literally an elaborate trick that you play on yourself — a lie that you tell your body so it keeps thinking everything is fine.

It’s a never-ending, exhausting, miserable cycle.

But I do it anyway.

I do it anyway because I have Lyme disease.  (See link for article)

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**Comment**

Elena states what I hear so often –

“I want to help.”

Admirable sentiment for sure.

But, speaking from experience, tread carefully.

Lyme/MSIDS (multi systemic infectious disease syndrome – a far better moniker than Lyme because we are typically infected with numerous pathogens) is not only hard on the body – it’s very hard on the mind.  Patients can’t handle stress.  

Since this is a hotly contested and politically incorrect disease which has caused a complete polarization within the medical community, even family and friends can oppose you and make you miserable..  It can be a very isolating journey where you question your own sanity.

So here’s what I tell these patients who want to help:  get better first.  Or – at least able to handle a bit of stress.

That’s not to say we can’t all educate those in our sphere of influence – but if you face a lot of resistance in your efforts, know when to “call it a day.”  Stress from ignorant people can actually make your symptoms flare and make you feel very despondent. Lyme/MSIDS can also give you rage, anxiety, fear, and a whole host of psychological symptoms that in your right mind you could handle but due to an infection in the brain leave you feeling powerless in controlling your emotions.  

For more on this:  https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/  Mainstream medicine is woefully ignorant of the mental/psychological effects of Lyme/MSIDS but it’s very real.

Recently, I posted a man’s admission that this complex illness nearly did him in:  https://madisonarealymesupportgroup.com/2020/07/17/lyme-disease-made-man-consider-suicide/

He’s not alone.  Make sure you get help if you find yourself feeling despondent.

And now we learn Elena is facing another battle.  She’s been vocal about Lyme and now they will make an example out of her:  https://madisonarealymesupportgroup.com/2020/07/23/its-ridiculous-the-wnba-is-forcing-elena-delle-donne-to-choose-between-her-health-and-her-paycheck/

Category:

Activism, Lyme