Archive for the ‘Lyme’ Category

Treatment Varies For Bell’s Palsy in Children With Lyme Disease

https://danielcameronmd.com/treatment-varies-for-bells-palsy-in-children-with-lyme-disease/

TREATMENT VARIES FOR BELL’S PALSY IN CHILDREN WITH LYME DISEASE

Treatment varies for Bell’s palsy in children with Lyme disease

“The UK county of Hampshire is a high incidence area of Lyme disease,” according to a recent article in the International Journal of Pediatric Otorhinolaryngology. ¹ Hampshire is a county in southern England. The study aimed to investigate the extent of idiopathic Bell’s palsy in children, the degree of variation in treatment, and “whether Lyme disease was being considered as a cause and being investigated and treated appropriately.”

By

The retrospective review included 93 children with idiopathic Bell’s palsy to the University Hospital Southampton NHS Foundation Trust from 2010 to 2017. Idiopathic facial nerve palsy, formerly called Bell’s palsy, is seen in early Lyme disease.

Very few children in the study with Bell’s palsy reported a tick bite or rash. In fact, only 14% had a tick bite, while 5% had a rash. Lyme disease testing was performed on 76 of the 93 children. Of these, 22 (29%) were positive for Lyme.

Neuroimaging was performed on approximately 20% of the children. The most common findings were consistent with inflammation or infection of the facial nerve.

Surprisingly, despite increased awareness of Lyme disease in the Hampshire region, nearly 1 in 5 children in the study were not tested for the tick-borne disease.

Additionally, the authors point out, “even in the absence of other signs or symptoms of Lyme disease, an FNP could be the sole presenting sign.”

Bell’s palsy treatments

“We found significant variation in medical management, with some children appearing to receive no treatment,” the authors write.

• Only 73.1% were treated with an antibiotic.

• The number of treatment days varied from 1 to 28, with a median of 14 days.

• 44% of the children were treated with the oral steroid, prednisolone.

• Over 17% were prescribed an antiviral medication.

• Nearly 20% received neuroimaging. The most common findings were consistent with inflammation or infection of the facial nerve.

The study was not designed to determine the outcome for these children. The study raises several unanswered questions: Could steroid use in these children affect the outcome? Could little or no treatment affect their outcome? Would any of these children develop long-term complications?

Study Conclusions

  • “Lyme disease is a significant cause of FNP in this endemic area of the UK, and there was a large degree of variability in management prior to national guideline publication.”
  • “In areas endemic with Lyme disease, Lyme disease should be considered as the likely cause of facial nerve palsy in children until proven otherwise.”
  • “All children presenting with [facial nerve palsy] FNP to health care providers in these areas should have Lyme serology tested and empirical treatment for Lyme initiated pending the results of tests.”
  • “Areas with endemic Lyme disease should consider introducing local guidelines supporting routine investigation and management for FNP, including empiric treatment for Lyme disease in accordance with NICE guidelines to improve care and reduce variability.”

(NICE refers to the UK National Institute for Health and Care Excellent, which developed guidelines for clinicians on the investigation and management of Lyme disease.)

Editor’s note: The number of cases of facial nerve palsy could be higher as the numbers reflect only Bell’s palsy in children, who were evaluated at their hospital. Yet, many doctors treat Bell’s palsy in their office.

Related Articles:

Steroids harmful to patients with Bell’s palsy caused by Lyme disease

Case report: 46-year-old Canadian man with Bell’s palsy

Clinical judgement leads to successful lyme disease treatment in young child

References:
  1. Munro APS, Dorey RB, Owens DR, Steed DJ, Petridou C, Herdman T, Jones CE, Patel SV, Pryde K, Faust SN. High frequency of paediatric facial nerve palsy due to Lyme disease in a geographically endemic region. Int J Pediatr Otorhinolaryngol. 2020 Jan 25;132:109905.

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**Comment**

This right here is why I’m losing hair.  Seriously.

  1. Lyme disease should be considered in ANYONE presenting with facial palsy as it is a hallmark symptom of early Lyme (although many don’t get it – just like the EM rash)
  2. They state only 14% had a tick bite.  Please know that’s what they found.  I’m sure there were many others that weren’t found.  Nymphal tick bites are painless and impossible to see.
  3. Only one in five were even tested!  The fact only 29% were positive isn’t surprising.  Lyme serology testing is abysmally poor missing anywhere from 50-86% of all cases:  https://madisonarealymesupportgroup.com/2018/01/16/2-tier-lyme-testing-missed-85-7-of-patients-milford-hospital/  We need to stop relying upon testing for diagnosis of Lyme disease.  It should always be clinically diagnosed which means doctors/nurses need to be educated to know what to look for.  It’s high time this “wait and see” paradigm changes as the longer it takes for diagnosis and treatment the worse the outcome.
  4. It’s also high time we throw CDC 2-tiered testing into the trash bin.  There are smaller CLIA-certified labs with far more sensitive testing.  We also need a direct test and we needed it 40 years ago.  This reliance upon faulty testing for diagnosis and entrance criteria into research studies must end.
  5. Treatment was all over the map with some not getting ANY treatment. This is unacceptable.  
  6. They used steroids – a big “no, no” in those with Lyme – unless they are using antimicrobials concurrently and are being carefully watched.  Catabolic steroids depress the immune system which will make infections worse.  Since mainstream medicine vilifies trained ILADS doctors who know this fact, their egos prohibit them from learning from others with training and experience.  It’s a sad state of affairs.  Please note Dr. Cameron’s related link in the “related article” section at the end.
  7. Some doctors were more willing to give steroids and anti-virals than antibiotics.  This is a prime example of doctors fearing retribution since our ‘authorities’ have made it abundantly clear they will come after doctors for utilizing extended antibiotics for Lyme.  While they won’t come after doctors for handing out steroids and anti-virals – both of which can have serious side-effects, they single out antibiotics.  The question you must ask yourself is why?  (Perhaps they don’t want people to recover?)
  8. I feel badly for these kids.  More than likely they are still suffering.  It blows my mind, after just reading Polly Murray’s “The Widening Circle,” that doctors are still not treating Lyme disease (a bacterial infection) with antibiotics and the respect it deserves.  They would rather sit back and study these poor kids like lab rats.  When early treatment (a few weeks or a month) would often completely resolve these cases, they continue with outdated propaganda that will assuredly maim and kill many. 
  9. In Murray’s book, it was clear that doctors chose not to treat many of these poor people.  It was also clear that those who were treated with antibiotics always improved.  Why is this fact not accepted?  Again, logic does not matter in the topsy-turvy world of Lyme/MSIDS.

For more:

https://madisonarealymesupportgroup.com/category/lyme-disease-treatment/

Category:

Lyme, research

Are Infections Seeding Some Cases of Alzheimer’s Disease?

https://www.nature.com/articles/d41586-020-03084-9

Are infections seeding some cases of Alzheimer’s disease?

A fringe theory links microbes in the brain with the onset of dementia. Now, researchers are taking it seriously.
Alison Abbott

Some scientists think that microbes such as the herpes simplex virus 1 (shown here on an epithelial cell) could trigger some cases of Alzheimer’s disease. Credit: SPL

Two years ago, immunologist and medical-publishing entrepreneur Leslie Norins offered to award US$1 million of his own money to any scientist who could prove that Alzheimer’s disease was caused by a germ.

The theory that an infection might cause this form of dementia has been rumbling for decades on the fringes of neuroscience research. The majority of Alzheimer’s researchers, backed by a huge volume of evidence, think instead that the key culprits are sticky molecules in the brain called amyloids, which clump into plaques and cause inflammation, killing neurons. (See link for article)

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**Comment**

Important quote:

Several microbes have been proposed as triggers of Alzheimer’s, including three human herpes viruses and three bacteria: Chlamydia pneumoniae, a cause of lung infections; Borrelia burgdorferi, the agent of Lyme disease; and, most recently, Porphyromonas gingivalis, which leads to gum disease. In theory, any infectious agent that can invade the brain could have this trigger role (there’s no good evidence, however, that SARS-CoV-2, the virus behind COVID-19, has this ability).

It’s also sad that Alzheimer’s research has been pigeon-holed for so long:  https://madisonarealymesupportgroup.com/2020/01/05/the-maddening-saga-of-how-an-alzheimers-cabal-thwarted-progress-toward-a-cure-for-decades/,  https://madisonarealymesupportgroup.com/2020/01/14/what-causes-alzheimers-not-toxic-amyloid-new-study-suggests/

This article contains Norrins’ paper in the comment section. The article above states there are 40 studies in the cue vying for the 1 million cash prize in March, when the challenge results will be announced:  https://madisonarealymesupportgroup.com/2019/12/23/a-turning-point-in-alzheimers-disease-microbes-matter/

https://madisonarealymesupportgroup.com/2019/12/23/a-turning-point-in-alzheimers-disease-microbes-matter/

Category:

Alzheimer's, Lyme, research, Viruses

Miss California USA Allyshia Gupta Reveals She’s Had Lyme Disease For 24 Years: ‘I Was Fearful’

https://people.com/human-interest/miss-california-usa-allyshia-gupta-reveals-lyme-disease-diagnosis/

Miss California USA Allyshia Gupta Reveals She’s Had Lyme Disease for 24 Years: ‘I Was Fearful’

“I think I’ve done myself and Lyme disease a disservice by not owning fully what I’m going through,” Allyshia Gupta says of coming forward with her diagnosis

By Joelle Goldstein

November 04, 2020 02:40 PM
Allyshia Gupta
Allyshia Gupta
| CREDIT: GRANT FOTO

Allyshia Gupta is embracing the truth about her health and revealing she has Lyme disease, more than 20 years after being diagnosed.

Gupta, who was crowned Miss California USA in January, tells PEOPLE that she first learned she had Lyme when she was 2-years-old, but never shared her story publicly for fear of “being seen as less than.” (See link for article)

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**Comment**

What a secret to hide, but not unwarranted.  Letting your employer know you are infected can be a double edged sword:  https://madisonarealymesupportgroup.com/2017/10/11/why-you-may-not-want-to-tell-your-employer-you-have-lymemsids/

In Gupta’s case I’m sure it was like letting a 10 lb weight off her back, which she had carried a long time.

Important quote: 

They brushed off her symptoms, insisting that she was depressed from her brother’s passing and should take anti-depressants, but Gupta knew there was more to it.

This is a great lesson that as a patient, you know yourself better than anyone.  Don’t allow a person with a couple of letters behind their name downplay your symptoms. They very well could be something more than grief or depression.  Listen to your body and hold your ground.  If one doctor refuses to listen, go to someone else.  NEVER QUIT.

It’s quite common to suffer symptoms when periods of stress occur.  You often have to accept a “measured” life with careful parameters.

Category:

Activism, Lyme

‘The Proof is in the Pudding” My Letter to the TBDWG

tickbornedisease@hhs.gov

They say, The proof is in the pudding.

My husband and I, and thousands of others have regained our health due to extended antibiotic treatment.

My name is Alicia Cashman and I run the Madison Lyme Support Group in Wisconsin.

Our dog became infected first, then my husband, then me. While our dog was put on a month’s worth of antibiotics (which is more than the CDC recommends for people) my husband and I languished, undiagnosed and untreated for years. Formerly an avid runner, my husband was reduced to playing Candy Crush on the couch in his robe. He wouldn’t admit there was a problem until he fell down the stairs. Meanwhile, I ignored my gynecological symptoms until they metastasized systemically, as he appeared far worse.  

Trying to find answers to our spiraling health, I explained our multiple migrating & relapsing symptoms to my kids’ coach, who said,

“This sounds like a page out of my book. I was just diagnosed with Lyme disease.”

This new information sent me on a quest that has never ended.

In my experience, this is how people finally get answers to their perplexing health deterioration: from other experienced patients. Due to the ignorance of mainstream medicine which follows antiquated and biased science which relies heavily on abysmal testing that misses over 70% of cases, and in this case 86%, where patients rarely test positive, and if they do manage to ‘win the lotto’ with a positive, they are told it’s a false positive.  A local woman called me yesterday with this exact scenario testing positive THREE times, but was told it was a false positive and was sent packing.

It’s a damned if you do, damned if you don’t situation where patients continue to lose.

The ugly history behind testing is something from a science fiction novel, only it’s very real.  There’s been a concerted effort to suppress direct diagnostic tests, and questions go unheeded.  There’s currently a $58.1 million lawsuit against the CDC for using its regulatory power to block application of a highly reliable direct DNA test and for channeling public funds to promote their own patented tests.

We are forced to seek help where we can find it due to this unscientific dogma which borders on the absurd.

Even though the history of tick-borne illness dates back to the 1800’s, working knowledge remains infantile, and having just read Polly Murray’s work, The Widening Circle, very little has changed in over 40 years. The issue of persistent infection continues on unabated, yet continues to be experienced by patients worldwide.

Due to our lives and health dissolving in front of our very eyes, we in Lyme-land learn quickly if we want to get our health back we need to go outside mainstream medicine which continues in this endless juggernaut due to the severe conflicts of interest of our public ‘authorities’, whom have rigged the diagnostic test for their own patent purposes and continue to control a narrative keeping people from proper diagnosis and treatment – which includes what is being taught in medical schools.

These are simple verifiable facts.  

We also suffer due to mainstream medicine’s simplistic germ theory that doesn’t match our symptom picture at all; mainly that we are typically infected with far more than just borrelia, the causative agent of Lyme disease.  Garg et al. not only show the polymicrobial (multiple pathogens) nature of the disease(s) but the fact borrelia is pleomorphic (shape-shifts); facts the chronic Lyme deniers continue to ignore.

These two issues are at the crux of understanding of Lyme/MSIDS – or multi systemic infectious disease syndrome. 

Further, mythology abounds:

  • We are are told nearly 80% get the “classic” bullseye rash, when it is highly variable and not “classic” at all.  This is problematic not only from a diagnostic stand point but because having the EM rash is often entrance criteria into research studies. By utilizing this criteria, as well as only accepting positive 2-tiered serology, studies are omitting a huge subset of patients – probably the sickest ones.
  • We are told that only 10-20% go onto develop symptoms after treatment, when it’s more like 40-60% when you count those that were diagnosed and treated late (nearly everyone I deal with).
  • We are continually told things are “rare,” only to have information quietly updated later.
  • We are continually told Lyme/MSIDS can’t be in certain locations only to be told later it exists after denying thousands treatment.
  • Southern patients have been fighting for decades to be properly diagnosed and treated but have been ruled by Andrew Speilman’s Iron Curtain.
  • Researchers continue to use the popular “climate change” moniker in their work, eating up precious research dollars, when independent research has proven tick proliferation to be caused by migrating birds and photo-period.  Ticks laugh at the weather. Rather than answering the very real question of the bioweaponization of ticks being dropped from airplanes, public ‘authorities’ continue a slight of hand by pushing the climate agenda.
  • We continue to be told Lyme/MSIDS can’t be spread sexually when research and experience indicates it can be. We were told it didn’t occur congenitally, yet much research and experience shows otherwise.

Wisconsin has a long history of tick-borne illness with many experienced doctors. Dr. Waisbren, an IDSA founder and Wisconsin physician, disagreed with his colleagues and successfully used high dose IV antibiotics for those with chronic Lyme disease.

“I have to come to the conclusion that there is an epidemic of chronic Lyme disease occurring in the United States that warrants more attention than it is getting from the government and the academic medical establishment. It is hard for me to believe that 51 cases of what I call the chronic Lyme disease syndrome represent a figment of my imagination….I suggest that those who doubt that the Lyme disease syndrome exists and that it can be treated turn to the over 200 peer-reviewed references included in summary articles written by two giants in the Lyme disease field: Dr. B.A. Fallon and Dr. Steven Phillips.”  Dr. Waisbren

If Waisbren thought chronic Lyme disease was an epidemic in 2011, what would he think now?

And what about those peer reviewed references showing chronic infection? Why are they continually ignored?  Here’s over 700.

And some newer ones.

The reason chronic Lyme/MSIDS is the crucial issue to be addressed is because there are thousands upon thousands that continue with severe symptoms after the outdated and unscientific CDC mono-therapy.

Biased, poorly done research on this issue states that further treatment doesn’t help yet my husband, myself, and countless others prove that axiom to be completely wrong.

Thankfully, ILADS trained doctors despite being persecuted, listen to patients, defy the accepted narrative, and are willing to treat longer and with numerous antimicrobials to address the often present coinfections. After-all, relapses have occurred in nearly every single antibiotic study ever done.

Treatment for this complex illness takes a savvy nuanced approach. My husband and I are living proof that a judicious use of antibiotics is not only effective but safe if done correctly.  Antibiotics are only part of a multi-pronged approach in treating this beast.  I suggest you listen to the thousands of ILADS trained doctors and other professionals rather than vilifying them.

I often shutter when I consider what would have happened had we remained under a doctor adhering the CDC guidelines which mainstream medicine follows as a literal mandate. We very well might be dead as we both had heart involvement.

Research for Lyme/MSIDS has only progressed by being independently done.

Lastly, I would like to include some quotes:

“The presence of live spirochetes in a genital lesion strongly suggests that sexual transmission of Lyme disease occurs,” said Middelveen. “We need to do more research to determine the risk of sexual transmission of this syphilis-like organism.”  Marianne Middelveen, PhD

“I AM CONVINCED THAT LYME DISEASE IS TRANSMITTABLE FROM PERSON TO PERSON.”  Lida Mattman PhD

“We never had in the last five years a single MS patient, a single ALS patient, a single parkinson’s patient, who did not test positive for Borrelia burgdorferi.  Not a single one.  Dr. Dietrich Klinghardt

“The CDC is responsible for the current Lyme disease crisis where patients cannot obtain a timely diagnosis through accurate early detection.” Lyme patient and advocate Carl Tuttle

“The people who test positive are ironically the ones who really aren’t sick other than a bad knee (Lyme arthritis). This is how after the Dearborne conference, where the case definition was fraudulently changed to a very narrow set of criteria that lyme came to be associated with arthritis, namely an arthritic knee, when in reality that is the very least of the symptoms most lyme patients encounter.

I liken the two tiered testing for lyme to giving a blind person a vision test then telling them they can see – it’s madness!”  Malia McClean

The ongoing and prolific conflicts of interest impede our public ‘authorities’ from making wise public health decisions.  The fact that only ONE patient representative is on the TBDWG succinctly proves my point.

Prove me wrong.

Category:

Activism, Lyme

URGENT: Submit Comments to TBDWG on Chronic Lyme TODAY By 11:59 p.m. ET

GLA_1C_Logo_CMYK

According to HHS staff, the Tick-Borne Disease Working Group (TBDWG) is scheduled to discuss and vote on a chronic designation for the 2020 report to the HHS Secretary and Congress at the upcoming meeting on November 17, 2020.

 It is critical that we, as advocates in support of a chronic designation, provide written comments to the TBDWG as it prepares to vote on this critical matter. Your written comments will not only provide scientific evidence of the chronic impact of Lyme disease, but also allow for you to share your personal story.  

Make Your Voice Count

 It is important that your comments reflect the need for a chronic designation by the TBDWG. Listed below are a few key talking points that can be included in your written comments that advocate for a vote in favor of the designation:

  • People are sick. And, they deserve better. The stigma, doctor ignorance and public shaming that surrounds this disease needs to be rectified.
  • A chronic-Lyme designation would ensure that countless Americans are provided proper diagnosis and treatment of this disease. 
  • We are seeking access to accurate testing, insurance coverage for this disease, employers recognizing that this is real. 
  • We ask the TBDWG recognize and recommend a chronic designation of Lyme disease. 

Comments can be submitted via this link or by directly sending to tickbornedisease@hhs.gov. It is important that your comments reflect the need for a chronic designation by the TBDWG. 

Guidelines to submit either a written or public comment as required by the  HHS below:

1. To submit a written public comment:

  • Submit an email to tickbornedisease@hhs.gov
  • Use the email subject line: Written Public Comment – November 17
  • Deadline: All written comments must be received by 11:59 p.m., ET, Friday, November 6
  • Provide your preferred identification: Tell us how you prefer to be identified with your comment. We cannot post your comment without this information. You may choose one or more of the following options:
    • Use your name
    • Be listed as anonymous
    • Include your city and/or state
    • Provide comments on behalf of an organization (please include the organization’s full name)

2. Writing your public comment:

  • Format: Comments must be in the body of your email or in an attached Word document.
  • Page Limit: Comments must not exceed four (4) pages in Calibri or Times New Roman, 11 point font (text that exceeds four pages will be deleted).
  • Graphics: Do not include graphics, images, text boxes, or tables. If included, they will not be retained.
  • Links: Hyperlinks will only be added for “.gov” sites (local, state, or federal). For all other reference sites, please insert the full URL (e.g., http://learn.genetics.utah.edu/content/epigenetics).
  • Attachments: Do not include any attachments. We are also unable to include attachments as supporting documentation to written comments.

Next steps: Your written comment will be posted to the HHS TBDWG website  before the meeting. If you have any questions or concerns about submitting your comment, contact tickbornedisease@hhs.gov. 

Global Lyme Alliance thanks you in advance for your willingness to submit a written comment to the TBDWG in support of this important initiative. 

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For more:

https://madisonarealymesupportgroup.com/2020/09/25/why-should-we-care-about-lyme-disease-a-colorful-tale-of-government-conflicts-of-interest-probable-bioweaponization-and-pathogen-complexity/

https://madisonarealymesupportgroup.com/2020/09/21/patients-speak-up-at-tbdwg-meeting-you-must-address-persistent-infection-and-chronic-lyme-disease-doctors-are-clueless/

 

 

Category:

Activism, Lyme