Archive for the ‘Treatment’ Category

Podcast: When a Family Has Lyme

https://www.lymedisease.org/podcast-when-multiple-members-of-your-family-have-lyme-disease/

PODCAST: When multiple members of your family have Lyme disease

By Fred Diamond

10/16/23

It’s hard enough managing your own or just your child’s persistent Lyme symptoms, but what do you do when multiple people in your family have Lyme and other tick-borne illnesses? What kind of support do you need and where do you get it?

On this week’s Love, Hope, Lyme Podcast, I talk with Jessica Snajder, founder of Partner in Lyme, a non-profit that distributes funds to families in Connecticut for medical care. She discusses how her family coped when she was diagnosed with Lyme three years after they started caring for her teenage daughter.

“I founded Partner in Lyme based on the experience my oldest daughter had with her diagnosis, the complications of treating Lyme, and the financial aspects of treating Lyme and I felt that something good had to come out of our family’s experience,” she said. “I have also become a patient. I was diagnosed with Lyme and have been in treatment myself. It has evolved from my daughter’s care to a nonprofit and then to a family experience.”

“Partner in Lyme was really born out of that desire to make something good come out of a really bad situation. We give financial support to Lyme survivors in Connecticut to spend on anything that falls under the wellness umbrella that helps them heal in their body, spirit, and soul.”

I asked her if everyone in Connecticut understands the disease, since it was named for a city in the state.

She said that it is not the case.

“Residents of Connecticut still are operating under such misconceptions about what Lyme disease is and what it is not. Not enough doctors are screening proactively at yearly checkups. Pediatricians are not looking for signs. There’s a lot of missed opportunity to catch people early on in treatment and it’s very hard to find a doctor to work with and afford.”

What Do Those Who Love a Persistent Lyme Survivor Need to Know?

Jessica said Lyme survivors might need emotional, physical, and financial support.

“No matter who that person is, they need emotional support. Chronic Lyme is isolating, it’s physically debilitating, and it impacts who you are. There’s a grief process that the person with Lyme goes through.  You’re going to mourn the things that you can no longer participate in, and how your life has changed through no desire of your own.”

She also said that sometimes physical support takes precedence and can be different from person to person.

“Everyone in my family has had different physical issues. One of us has had more neurological issues, which has resulted in them not being able to drive. Someone else has mobility issues and that has led at times to wheelchair use or spending days on the couch until a flare passes,” she said.

“For myself, it was a little bit of both plus memory issues. My family thought I was multitasking or maybe on my phone when they were speaking to me. They would get frustrated with me when I wouldn’t respond, but once they realized that this wasn’t me not paying attention, this is my mind being affected by a bacteria, then it was easier to say, ‘all right, I’ll repeat that for you,’ or, ‘I won’t get aggravated if I think that you’re just not listening to me.’

Not surprisingly, financial support is often needed.

“Unless you are a wealthy individual, it’s almost impossible to do all the things that you would like to do and that your doctor may advise you to do,” she suggested.

She said that people don’t understand you just cannot go to your primary care physician for chronic Lyme. She estimated that the average patient spends about $50,000 out of pocket a year, if they can. Since most people cannot afford that, they’re not getting the treatment that they need, which means they need even more emotional support and even more physical support, because their bodies are not getting what they need to heal.

Complications When She Got Lyme Disease

Jessica said she was diagnosed with Lyme three years after her daughter was diagnosed.

“My oldest daughter was diagnosed in 2018, after seeing 10 doctors and struggling for about a year and a half to figure out what was wrong with her. That affected her senior year of high school into college. There was a lot of support that had to be given just to get her to finish school. I was driving her to college, waiting for her to finish her classes, and then driving her home.”

Jessica said being a caregiver was deeply entrenched in her day-to-day life and helped her process her own diagnosis. “I had the benefit of understanding this disease deeply. I was one of those classic long COVID cases but because I knew enough about Lyme, I knew it was not normal that my joints were hurting too.”

“My biggest takeaway was just the heartbreak for wanting things to go back the way they were and knowing that they can’t easily, and they may never go back. It’s reframing your life. As a 50-year-old woman, it’s easier for me to do that than as a 20-year-old young person,” she observed. “My heart just broke a bit more for her when I realized how significantly this takes a toll on your mental health. Looking for joy, trying to experience joy in a different way.”

Her Suggestion for Caregivers

When I asked her for advice for people who want to support Lyme survivors, Jessica said to avoid generalizing.

“When you share that you have Lyme, inevitably someone will say to you, “Oh, so-and-so had Lyme and they did X, Y and Z and they’re better. It’s no big deal. Well, yes, it’s a big deal. There are lot of misconceptions about how to treat Lyme and how not to treat Lyme. When you share these anecdotal stories of someone’s friend of a friend of a friend, it’s not received well.”

She advised not to minimize it and to try to think of it as if this person in your life was diagnosed with cancer. “Just cut off cancer and put in Lyme because the similarities between those two diseases are very strong and the quality of life for someone with Lyme consistently rates lower than someone who has been diagnosed with cancer.”

The biggest thing is to empathize with them. To not take anything that happens personally.

“If you are willing to set yourself aside and be selfless in your expression of how you love that person, whether you’re loving them as a friend or as a spouse, it’s humbling to set yourself aside and give that person what they need. It is a lesson in what love really is. Being compassionate, being kind, being selfless, seeking someone else’s well-being above your own.”

Learn more about Partner in Lyme here.

Click here to listen to all episodes of the Love, Hope, Lyme Podcast or on YouTube.

Fred Diamond is based in Fairfax, VA and can be contacted via Facebook. His popular book, “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know” is available on Amazon. The e-version of the book is always free to Lyme survivors. Send Fred a private message on Facebook for your copy.

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**Comment**

We spent about 15K per person about 10 years ago; however, our LLMD doesn’t test much as he just doesn’t feel they are accurate – plus they cost a lot of money. We stuck primarily with low cost antibiotics and when they were expensive we ordered from a Canadian pharmacy which gets most of these drugs from India making them much cheaper.  You have to plan a month in advance to do this successfully.  That said, we had to supplement with many things and supplements are rarely cheap.

The last I checked, an herbal treatment program runs about $300 a month per person unless you get the ground herb in bulk and make your own.

For more:

Category:

Lyme, Treatment

Woman With Lyme, Babesia, & Bartonella Turns to Carnivore Diet & Improves

https://www.dailymail.co.uk/femail/article-12446991/woman-plant-based-diet-killing-lyme-disease-carnivore

EXCLUSIVE – Woman, 38, whose undiagnosed Lyme disease left her ‘MINUTES from death’ reveals how plant-based diet nearly DESTROYED her body – before she turned to strict carnivore regimen that completely cured her symptoms

  •  Angela Lerro, 38, from Los Angeles, stopped eating most meat and fish in 2013
  • She began fainting up to 20 times a day and suffering from anaphylaxis
  • Angela learned her diet was killing her after being diagnosed with Lyme disease

By CAROL DRIVER FOR DAILYMAIL.COM

PUBLISHED:

A woman who was advised to follow a plant-based diet after being diagnosed with breast cancer and having a mastectomy has opened up about how shunning meat almost killed her while she was suffering from undiagnosed Lyme disease. 

Angela Lerro, 38, from Los Angeles, stopped eating most meat and fish and lived mainly on vegetables and colorful salad dishes for three years after undergoing surgery in 2013.

But instead of feeling better, she began fainting up to 20 times a day, breaking out in hives and rashes, and suffering from heightened anxiety and anaphylaxis. She became so bloated, she looked pregnant.

The reiki master was told it was post-cancer ailments, but her symptoms were actually caused by undiagnosed Lyme disease, which she’d been unknowingly battling for over 30 years. (See link for article)

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**Comment**

This is quite the journey this poor woman has lived.  I pray something within will help someone out there who has barked up every tree but still hasn’t found any answers – or should I say THE answer?

As always, this is not medical advice.  Make sure you are working with an experienced Lyme literate doctor.   But, as is often the case with Lyme/MSIDS, we simply have to experiment.

Angela went on the “Lion Diet” otherwise known as the “ultimate elimination diet,” to reduce inflammation.  Angela believes that ruminant fat, meat, and organs contain the most bioavailable nutrients the body can absorb and use.  She states borrelia feed off gluten, grains, and sugar and when they are consumed they create inflammation.  When she ditched her low-histamine paleo diet for bison, veal, lamb, and venison many of her symptoms disappeared within three months.  She no longer fainted and her mobility improved.

She also had undiagnosed Babesia and Bartonella.

Angela helps others.  Go here for her info: https://www.instagram.com/meatbasedmedium/

I too have improved dramatically with diet; however, diet really didn’t appear to be a problem until later – after I had treatment for 5 years.  Now, could a dietary switch have helped?  Possibly, but as you know – it’s nearly impossible at times to distinguish what is doing what.  It wasn’t until I developed a very painful Baker’s Cyst and what appeared to be “arthritis” that I got serious about diet.  I’m happy to report that I’ve experienced great improvement by ditching gluten, most dairy (except hard cheeses and whipping cream), and trying valiantly to eliminate sugar.  That last one is the tough one for me.  🙂

or more:

Category:

Babesia, Bartonella, diet and nutrition, Inflammation, Lyme, Treatment

Interstitial Cystitis & Bladder Symptoms in Lyme & Bartonella

https://www.treatlyme.net/guide/interstitial-cystitis-lyme  (Article and video Here)

Updated: 10/13/23

Interstitial Cystitis and Bladder Symptoms

By Dr. Marty Ross

Some patients with Lyme disease and bartonella infection have symptoms similar to those seen in a bladder infection. These symptoms include

  • urge to urinate,
  • bladder pain and pain on urination,
  • bladder cramping, and
  • increased frequency of urination.

When these symptoms occur, a bladder infection should be ruled out by a healthcare provider. When it is ruled out, these symptoms are often the result of a condition called Interstitial Cystitis. Depending on a person’s age and other risk factors, a urologist may need to evaluate the bladder with a fiberoptic scope to assure that cancer is not present and to confirm a diagnosis of Interstitial Cystitis.

In this article I review the ways to support Interstitial Cystitis with natural medicines in a Lyme disease treatment.  (See link for article and video)

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For more:

Category:

Bartonella, diet and nutrition, Lyme, Supplements, Treatment

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]

By 

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

WHO Ignores its Own Rules & Refuses to Share Finalized IHR Amendments With the Public 4 Months Before the Vote

https://merylnass.substack.com/p/the-who-will-ignore-its-own-rules

The WHO will ignore its own rules and refuse to share the finalized IHR Amendments with the public and member states 4 months before the vote in May 2024: CHD-TV

WHO’s principal legal officer, Steven Solomon, created a legal weasel fig leaf to justify this illegal maneuver, which has been approved–but how? by whom? and is there any recourse for the people?

MERYL NASS
Oct. 10, 2023

The WHO’s press release states what happened in very general terms, so only the already-initiated will understand it. Article 55 of the WHO Constitution requires that amendments to WHO documents be offered to the member states and public 4 months in advance of a vote. The Saudi co-chair said to the public that his Working Group on the IHR amendments may not complete their work by January needed to meet the timeline to be voted on in May 2024. In a choreographed move, he asked Principal Legal Officer Steven Solomon what to do about this. Solomon had already crafted a plan. His plan was to create a specious excuse to ignore the existing rules.

Nobody voted on ignoring them. Nobody said this was okay. It just became a done deal. And here is the WHO press release, saying very little, explaining nothing, just issuing a vague statement that the rules will be ignored and no amendments will be available till (probably) after the vote or consensus process takes place in May.

And here is the show where James Corbett, James Roguski and I discuss what is happening before our eyes, and tell you who really runs the WHO—its private donors.

(See link for more)

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**Comment**

Similarly to the FDA, CDC, HHS, NIH, NIAID, AMA, medical journals – etc. always attempting to monopolize medicine, the WHO and other global organizations run by the unelected are in lock-step to destroy freedom as we know it and particularly medical freedom.

If you are unfamiliar with IHR (International Health Regulations), and the Pandemic Treaty, which would make the unelected WHO tyrannical ruler of the world, go here:

For more on the monopolization of medicine:

Category:

Activism, Treatment, vaccines, Viruses