Archive for the ‘Lyme’ Category

Yet Another “Unique” EM Rash

https://danielcameronmd.com/unique-presentation-em-rash/

A UNIQUE PRESENTATION OF AN EM RASH

unique-EM-rash

The rash, indicative of Lyme disease, does not always present as a classic “bull’s-eye rash,” as this case report demonstrates. A broad spectrum of lesions has been reported in patients with Lyme disease (LD). In fact, one study found only 6% of the lesions in LD patients had the “classic bull’s-eye or ring-within-a-ring pattern.” [1]

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In the case report, “A Non-Classical Presentation of Erythema Migrans in a 51-Year-Old Woman With Early Manifestation of Lyme Neuroborreliosis (Bannwarth Syndrome),” Lorquet et al. describe a 51-year-old female who presented with general malaise, headache, neck stiffness, and an expanding rash consistent with Lyme neuroborreliosis.2

The woman reported having a worsening of her symptoms over a 4-day period and a rash which expanded on her upper back but she did not recall any tick bites.

“She stated that [the rash] started as a small area of redness, spreading rapidly,” the authors wrote.

Clinicians suspected she might have cellulitis and prescribed cephalexin and valacyclovir. But her symptoms did not improve.

“The “bull’s-eye” appearance of erythema migrans is not the only cutaneous manifestation of the acute stage of Lyme disease. There can be multiple variations of the rash, as demonstrated in the patient.”

According to the patient, “the rash had gotten larger and more pruritic [itchy] and that her headache had become more severe, also causing severe pain that radiated to the right side of her neck,” the authors wrote.

The erythema migrans (EM) rash covered two-thirds of her back and had a 5 cm crusted plaque in the center. There was a second circular rash that appeared, as well, behind the woman’s right ear.

READ: The many presentations of the Lyme disease rash

Clinicians treated her symptoms with intravenous ondansetron, ketorolac, pantoprazole, and saline. But also empirically treated for Lyme disease with doxycycline.

After Lyme disease testing was positive, the woman was diagnosed with Lyme Neuroborreliosis, also known as Bannwarth syndrome in Europe.

Bannwarth syndrome (BS) is a typical manifestation of early Lyme neuroborreliosis (LNB) in Europe. It is characterized by painful radiculopathy, neuropathy, varying degrees of motor weakness and facial nerve palsy, and cerebrospinal fluid (CSF) lymphocytic pleocytosis.3

“Several weeks later, the patient had made a full recovery and was back to her baseline level of functioning,” the authors wrote.

They point out, “The “bull’s-eye” appearance of erythema migrans is not the only cutaneous manifestation of the acute stage of Lyme disease. There can be multiple variations of the rash, as demonstrated in the patient.”

Related Articles:

Single dose of doxycycline for treatment of tick bite only prevents a Lyme disease rash

Erythema migrans rash doesn’t always have a bull’s-eye appearance

Lyme disease mimics cellulitis skin infection

References:
  1. Schotthoefer A M, Green C B, Dempsey G, et al. (October 25, 2022) The Spectrum of Erythema Migrans in Early Lyme Disease: Can We Improve Its Recognition? Cureus 14(10): e30673. doi:10.7759/cureus.30673
  2. Lorquet JR, Pell R, Adams J, Tak M, Ganti L. A Non-Classical Presentation of Erythema Migrans in a 51-Year-Old Woman With Early Manifestation of Lyme Neuroborreliosis (Bannwarth Syndrome). Cureus. 2023 Jun 4;15(6):e39931. doi: 10.7759/cureus.39931. PMID: 37416051; PMCID: PMC10319937.
  3. Shah A, O’Horo JC, Wilson JW, Granger D, Theel ES. An Unusual Cluster of Neuroinvasive Lyme Disease Cases Presenting With Bannwarth Syndrome in the Midwest United States. Open Forum Infect Dis. 2017 Dec 23;5(1):ofx276. doi: 10.1093/ofid/ofx276. PMID: 29383323; PMCID: PMC5777478.

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**Comment**

So many thoughts here.

  • The rash issue has caused frequent, unnecessary delays in diagnosis and treatment as doctors are not properly educated on actual science, but have been fed a CDC-narrative.  Most doctors are unaware that this rash is diagnostic for Lyme disease, and that misdiagnosis can have fatal consequences.
  • Aucott reports that 54% of Lyme disease patients who present without a rash are misdiagnosed.
  • The designation of Bannwarth Syndrome is also confusing and has caused massive misdirection.  The symptoms are nearly synonymous with most cases of Lyme & can cause severe burning, stabbing, biting, or tearing pain & responds poorly to analgesics:
    • radicular pain (100%)
    • sleep disturbances (75.3%)
    • headache (46.8%)
    • fatigue (44.2%)
    • malaise (39%)
    • paresthesia (32.5%)
    • peripheral nerve palsy (36.4%)
    • meningeal signs (19.5%)
    • paresis (7.8%)
  • This case study shows many of the problems that continue on unabated in Lymeland.

Category:

Lyme, research, Testing, Treatment

“The Quiet Epidemic” Coming to Philadelphia

https://www.cbsnews.com/philadelphia/news/lyme-disease-philadelphia-the-quiet-epidemic-sarena-snider/  News story here (Approx. 6 Min)

New documentary about Lyme disease, The Quiet Epidemic, is coming to Philadelphia

BY STEPHANIE STAHL, WILL KENWORTHY

 / CBS PHILADELPHIA

PHILADELPHIA (CBS) — There are more cases of Lyme disease in Pennsylvania than anyplace else in the country. Now there’s a new documentary about Lyme coming to Philadelphia.

An executive producer for the documentary grew up in the area and had her own struggles with Lyme disease.

“I always think about it, especially before going into the woods,” Sarena Snider said.

Snider loves being outside on the Main Line but is careful about ticks after she and several family members battled Lyme disease.

“It took me two years to really figure out what was going on,” she said.

(See link for article and news story)

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**Comment**

It must be noted that Snider states that getting a Lyme literate medical doctor is “really important.”

Now, why would this be?

Anyone with experience in Lymeland knows that due to the ongoing, unchanging polarization in the medical community most doctors are too afraid to diagnose and treat this for fear of being persecuted by bought-out state medical boards and professional groups who are part and parcel of the overt monopolization of medicine.

 It is true that an independent doctor could save your life.

These independent doctors are the only doctors who will take on the Lyme/MSIDS beast and many of them have paid dearly for doing so.

So far the corrupt IDSA (Infectious Diseases Society of America) has succeeded against lawsuits accusing the group of forcing doctors to abide by their antiquated and unscientific Lyme guidelines.

The IDSA, similarly to the FDA, has stood its ground by stating the guidelines are merely “medical opinions” not held as “facts.” Many doctors that have been attacked for going against these supposed “medical opinions” would disagree with this notion as they have been fired, had their licenses revoked, hospital privileges suspended and have been publicly degraded.

This time doctors sued the FDA for unlawfully interfering.

But here we have yet another patient expressing to others the need to get an independent, Lyme literate doctor to obtain true help. The reason for this is crystal clear:

Doctors are held hostage by the IDSA guidelines.
Period.

The Torrey case appears doomed already as the U.S. Circuit Judge Kyle Duncan indicated he is leaning towards affirming dismissal of the lawsuit.

“My concern here is there has to be a forum for debating scientific questions,” the Donald Trump appointee told Speer. “And this is a scientific question — how to treat this. We all know that. There has to be a forum for that. And we can’t have lawsuits against people who are debating the scientific question in a forum.”

The problem, of course, is that there is no forum for debating COVID or Lyme/MSIDS which is why doctors have had to break away from the IDSA juggernaut to form their own group called ILADS (International Lyme and Associated Diseases Society) who have created their own Lyme Guidelines.

Government sponsored talking heads denying life-saving treatment in lieu of a lucrative but ineffective and dangerous “vaccine” is the “new norm,” where doctors get kick-backs for pushing them.

Category:

Activism, Lyme, Treatment, vaccines

Do You Have to be a Millionaire to Heal From Lyme Disease?

https://www.lymedisease.org/does-it-take-millionaires-fortune/

Does it take a millionaire’s fortune to heal from Lyme disease?

Aug. 18, 2023

International supermodel Bella Hadid has an estimated net worth of $25 million.

Actress Riley Keough, granddaughter of Elvis Presley, has just been named sole custodian of Graceland mansion and the family shares of Elvis Presley Enterprises, reportedly worth $500 million.

In addition to being super-wealthy, these two glamorous women have something else in common. Both have recently spoken publicly about having Lyme disease—and the challenges they’ve faced in getting well again.

In a cover story in Vanity Fair magazine, Keough says she went to a clinic in Switzerland: “It’s a holistic treatment center and offers all kinds of things that you can’t really do in America yet, like cleaning your blood.”

At about the same time the Vanity Fair issue came out, Bella Hadid posted on Instagram about recently undergoing more than 100 days of intensive treatment for Lyme disease and co-infections, after “15 years of invisible illness.” Although no specifics of treatment are given, accompanying photos suggest that IVs were certainly part of her protocol.

For sick and suffering Lyme patients who are NOT multi-millionaires—typically forced to travel long distances to even find a practitioner who acknowledges their illness, and then must pay out of pocket because insurance companies won’t cover such treatments—these news stories can seem like a cruel joke.

“What do either of these women have to complain about?” is an oft-asked question on Facebook. “If I had money like that, all my problems would be solved.”

But as other commenters on Facebook frequently respond, even having boatloads of money doesn’t necessarily make the problem go away. Bella Hadid’s rich family and her Lyme-experienced mother Yolanda still couldn’t shield her from 15 years of suffering.

However, one thing that such celebrity news coverage certainly does is raise the profile of Lyme disease in the news media. As an example, LymeDisease.org has received a raft of media inquiries in the wake of the Bella/Riley revelations. Just this morning, I received a message from a news service in China, seeking comment on the situation.

Here are just a few examples of the widespread news coverage of Bella and Riley:

Yahoo News: Bella Hadid and Riley Keough undergo intensive treatments for Lyme disease. The average person can spend up to $10,000 a week treating the condition.

Today Show:  Bella Hadid opens up about journey with Lyme disease. What to know about the condition

Daily Express (UK):  Elvis Presley’s granddaughter Riley Keough opens up about ongoing battle with Lyme disease

TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide, and of the forthcoming title Finding Resilience: A Teen’s Journey Through Lyme Disease. Contact her at dleland@lymedisease.org.

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**Comment**

The older I get and the more I see and hear, the more I believe healing is truly as individual as the case itself and money can have little to do with it.  

That’s not to say treatment doesn’t cost money.

I added up that we spent about $15K per year per person when we were treating years ago.  I’m sure this price has gone up now.

But I also know people who grow their own herbs and make their own medicine for pennies that are doing marvelously.  This woman was “healed” of chronic Lyme through dry fasting (although like most other patients, she utilized many treatments). I believe one of the biggest keys is being invested in healing and making it a natural part of life. There’s a lot of these people in Wisconsin – people that refuse to give up.  People that love nature, are great examples of good stewards of the earth, and that have an attitude of fortitude.  Now, that’s not to say that they don’t succumb to periodic episodes of melancholy or even weariness but they know that’s not healthy for mind or body and determine to overcome it.

Even with the major trials of life these remarkable patients plod on – determined to be well.

I must say that just talking to these patients encourages me to also plod on.  You see, this mentality is contagious – infectious really, and is a weapon/treatment all its own that doesn’t get enough press or attention.

My ear is to the ground and I’ve followed these wealthy stars traversing the world for treatment.  None of them are completely well and they all suffer despite their wealth and opportunity.  What does this tell you?  All their money, seemingly, isn’t the key.  I’m not downplaying the importance of treatment, but treatment afforded through money is only one prong of this multi-pronged fork and it takes everything to overcome this beast.

My advice: be content with what you have.  Don’t covet what others have.  Learn from everyone – rich or poor and determine in your own mind that YOU ARE GOING TO GET WELL!  Accept nothing else.  One caveat: do not put pressure on yourself as pressure equals stress and stress is a killer.  Calmly do your research.  Calmly experiment to find what works.  Calmly talk to other patients and take notes. Calmly apply what you learn, be patient, and have the contagious attitude of fortitude.

That’s the advice from an aging grey hair who at one point just wanted to cash her chips in.
NEVER QUIT!

And never lose your sense of humor.

P.S. – While the exact clinic in Switzerland is not listed, I can tell you right now that “cleaning the blood” is not a cure-all as borrelia does not hang out in the blood, which is the root of most treatment and testing problems.  This is also why antibiotics are not a “cure all” in the sense that you can not do a couple months of abx and be “cured.” Borrelia loves the brain, synovial fluid, and immunopriviledged sites that are protected by the body. You can clean the blood until the cows come home and these turds are safely and patiently hiding out.

Treating Lyme/MSIDS requires patience!

If it’s this clinic, it uses the same approach as this German clinic that focuses on hyperthermia or active fever therapy. Read this patient’s experience who went there.  Please note that when I quizzed this German doctor’s experience with hyperthermia “curing” Lyme, he said patients need “tune ups” which is code for it isn’t curative.  I’m not belittling this treatment at all and know many have greatly benefitted from it but I’m a realist and don’t want patients believing that this treatment is the answer to their dreams.  It may be, but it also may not be – just like every other treatment under the sun.  

And lastly and most importantly, always keep in mind that Lyme is just the tip of the spear as patients are typically infected with far more than just Lyme and it all requires savvy, individualized treatment and no two cases look alike.

For more:

Category:

Activism, Hyperthermia, Lyme, Treatment

Lyme Disease Misdiagnosed As Psoriatic Arthritis

https://danielcameronmd.com/lyme-disease-misdiagnosed-psoriatic-arthritis/

LYME DISEASE MISDIAGNOSED AS PSORIATIC ARTHRITIS

lyme-disease-psoriatic-arthritis

In their article, “Rare case of Lyme borreliosis in a patient presenting with dactylitis and skin rash,” Steppat et al. describe a patient with Lyme borreliosis, who was initially misdiagnosed with Psoriatic arthritis (PsA), a chronic inflammatory disease that occurs when your immune system mistakenly attacks healthy joints and skin. [1]

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The man, in his 70’s, presented with dactylitis (severe swelling of the fingers or toes), onycholysis of the nails (nail separates from the skin) and scalp psoriasis, which lead to the diagnosis of psoriatic arthritis.

However, he did not respond to treatment with corticosteroids or disease-modifying antirheumatic drugs.

“A skin biopsy was performed showing histopathological changes compatible with Lyme borreliosis (LB) and serum contained IgG antibodies against Borrelia burgdorferi,” wrote Steppat and colleagues.

“To our knowledge, this is the first case of LB describing asymmetrical dactylitis in a hand.”

The man did not recall a tick bite but reported that his fingers first began to swell several weeks after gardening.

“It was concluded that the patient was not suffering from PsA but [Lyme borreliosis] with manifestations of dactylitis, arthritis and [acrodermatitis chronica atrophicans] ACA,” the authors wrote.

After 1 week of penicillin, the swelling of the patient’s fingers improved.

After 6 months, the arthritis, tenosynovitis (inflammation of the tendon sheath), soft tissue swelling and skin rash had completely resolved.

“… dactylitis is a common feature of [psoriatic arthritis]. However, dactylitis may also be seen as a clinical feature in several other diseases such as [Lyme borreliosis].”

Furthermore, the authors point out, that Lyme borreliosis can occur even when there is no history of a tick bite or erythema migrans rash.

When a patient is not responding to treatment for psoriatic arthritis, it is “crucial to re-evaluate the medical history, objective examinations and laboratory tests. In this case, the conclusive clue was hidden in the skin biopsy.”

Related Articles:

Lyme disease mimics cellulitis skin infection

Lyme arthritis symptoms in young child emerge years after tick bite

TMJ arthritis triggered by Lyme disease

References:
  1. Steppat A, Skaarup Andersen N, Andreasen CMRare case of Lyme borreliosis in a patient presenting with dactylitis and skin rashBMJ Case Reports CP 2023;16:e253182.

For more:

Category:

Lyme, research, Uncategorized

Need Help Paying for Lyme Testing & Treatment?

https://www.lymedisease.org/paying-for-lyme-testing-treatment/

Need help paying for Lyme testing and treatment?

By Dorothy Kupcha Leland

Sept. 28, 2023

The following organizations offer financial assistance for Lyme patients. They have differing application rules and deadlines, so it’s important to click through to their individual websites for details.

LivLyme Foundation

Financial assistance for Lyme treatment for children and young adults through age 21. United States only. Next application deadline is October 31. Apply here.

Lymelight Foundation

Treatment grants for children and young adults through age 25. United States only. Next application deadline is December 8. Apply here.

Lyme Treatment Foundation

No age limit. Citizens of the US, the UK (England, Ireland, Scotland, Wales), and Germany are eligible to apply. Applications will open in November.

LymeTAP (Lyme Test Access Program)

This program helps pay for initial Lyme-related lab tests. For eligibility requirements, click here. To download the application, click here.

LymeAid4Kids

This program can provide up to $1,000 toward diagnosis and/or treatment for Lyme & other tick-borne diseases, for patients through age 21. Apply here.

Partner in Lyme

This program provides grants of $1,000 in financial assistance to residents of Connecticut dealing with a Lyme+ diagnosis. Details here.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide, and of the forthcoming book Finding Resilience: A Teen’s Journey Through Lyme Disease. Contact her at dleland@lymedisease.org.

Category:

Activism, Lyme, Testing, Treatment