Archive for the ‘Lyme’ Category

Tick-Borne Disease Working Group Meeting Sept 15 & 22. Submit Comments by Sept. 4

https://www.lymedisease.org/tbdwg-sept-4-deadline/

TBD Working Group meets Sept. 15 & 22; submit comments by Sept. 4

Tcvik-borne disease working group

The federal Tick-borne Disease Working Group will meet online on two non-consecutive days, September 15 and 22, from 9 a.m. to 2:30 pm, Eastern Time.

The TBDWG will review the draft 2020 Report to Congress, and review and approve graphics and images for the report.

Public comment may be provided verbally or in writing. Thirty minutes has been set aside for verbal comments on September 15.

Persons who wish to provide verbal or written comments should review directions at the Tick-Borne Disease Working Group website.

Written comments or requests to deliver verbal comments must be submitted by midnight, Eastern Time, Friday, Sept. 4.

 

Category:

Activism, Lyme

Can We Cure Lyme Disease….or What?

https://www.lymedisease.org/cure-for-lyme-disease-or-what/

By Dorothy Kupcha Leland
27 AUG 2020

TOUCHED BY LYME: Can we cure Lyme disease…or what?

is there a cure for Lyme disease

The following question from somebody named Tom showed up in my inbox today:

Do you know of a cure for Lyme disease or are we just throwing money at it year after year?

That was the whole message. I know nothing about Tom’s circumstances, but he asks a fair question and I’ll answer it as best I can.

If Tom’s experience is anything like that of 12,000+ Lyme patients enrolled in the MyLymeData project, he’s been sick for years. He probably had to go through four or more doctors before even being diagnosed with Lyme disease. And by that time, he’d probably run through whatever treatment options his insurance might have covered—and is now deep into “paying out-of-pocket” territory.

He likely continues to suffer from such symptoms as severe pain, crushing fatigue, sleep impairment and cognitive problems. (He could have a host of other symptoms as well.)

And from the frustration evident in his question, I assume that whatever treatment he has been paying for has not helped him.

Unfortunately, many people find themselves in the same boat. And there’s no magic-bullet answer.

Here’s my take on it

Lyme disease is a complex condition, with many confounding factors. Yet often, the medical establishment presents it like this: a perfectly healthy person gets bitten by a tick that miraculously carries only one infection—Lyme disease. Within a few days, the person develops a tell-tale rash and flu-like symptoms. The doctor prescribes a short course of antibiotics. Bingo! The person is restored to perfect health. Case closed.

And there are, in fact, some individuals who seem to fall into that “ideal” category. But there are tens of thousands of people every year who do not. And those people, whose symptoms may drag on for months, and years, and even decades, are kicked to the curb by the medical establishment. They are the ones crying into the abyss, “Is there a cure out there—somewhere?”

Some people with persistent Lyme eventually find their way to what we call “Lyme-literate” doctors. And, with longer treatment, many of those folks are restored to health. And yet, there are some—like Tom, I presume—who are still sick even after years of treatment.

Questions to explore

Tom, I feel for you. And I wish I had a magical elixir to offer. Instead, I have some questions for you to think about.

Have you been evaluated for co-infections? These are other nasty microbes the tick can transmit along with Lyme disease. Untreated co-infections can throw a wrench into the healing process.

Have you investigated the question of toxic mold exposure? It turns out mold can cause a heap of problems for people with Lyme disease.

Those are only two factors that can hinder your ability to recover from Lyme. I recommend the following books that can help you explore these and other areas.

Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease, by Dr. Richard Horowitz

TOXIC: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities, and Chronic Environmental Illness, by Dr. Neil Nathan

Have you joined any Lyme patient support groups? Hearing from others going through similar challenges can be immensely helpful. You can learn about doctors, treatments, detoxification methods, what supplements others have found helpful—and gain much-needed moral support.

Click here to join LymeDisease.org’s network of online support groups.

Emerging treatments

Disulfiram is an “old” drug that has recently been repurposed as a Lyme disease treatment. It reportedly helps some people a great deal—and others, not so much. It is not without risks, so if you’re considering it, I suggest you do your homework. The following article offers a good introduction: What is disulfiram and why is it sparking excitement in the Lyme community?

Many patients tell me that medical cannabisrelieves a lot of their Lyme symptoms—including pain and insomnia. Again, you need to do your homework. Cannabis comes in different forms and strengths, and you need to find the right combination for you. And, alas, it’s not legal in every state.

Tom, I hope this article gives you some ideas about new ways to pursue healing.

Furthermore, I encourage anyone who has been diagnosed with Lyme disease to enroll in MyLymeData—whether you are currently sick or well. This kind of information about Lyme disease has never before been collected on such a large scale. Your experiences can help pave the way for a cure—for Tom, and a whole lot of other people.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.

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**Comment**

Great post and great question – one I purposely did not investigate for a long time.  I just couldn’t handle the potential answer!  I had to bury my head in the sand and believe I was going to get better.

Besides the resources mentioned within the article, I highly, highly recommend Dr. Burrascano’s video where he not only gives the history of Lyme, but goes into detail on treatment nuances that helped not only him, as he was infected, but many of his patients as well.

The video is here:  https://madisonarealymesupportgroup.com/2018/12/28/the-history-of-lyme-disease-dr-burrascano/

I highlight the video here:  https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/

Please talk about these issues with your practitioner and the two of you need to hunt to ground all of your rabbit-holes that are thwarting your progress – and there can be many.  At the ILADS convention a few years ago, MCAS was all the rage as Lyme doctors were finding a large portion of their patients struggled with it.

Leland’s suggestion of finding a local support group is also helpful.  I’ve learned more from patients than I have from doctors as we share what we’ve learned, what’s helped, and what hasn’t.  Of course, these things vary from patient to patient and shouldn’t solely be used for decisions – but will help you whittle things down.  I often have a “show and tell” day where I ask everyone to throw what has worked into a box and bring it to group.  This way we can visually see and touch many different products and in some cases even try things before we have to spend money in purchases (like with Biomats, portable saunas, etc).  I really enjoy these meetings as there’s always so much to learn and products continually change.

 

Category:

Lyme, Treatment

Can Lyme Disease Cause Dementia?

https://danielcameronmd.com/can-lyme-disease-cause-dementia/

CAN LYME DISEASE CAUSE DEMENTIA?

can lyme disease cause dementia

There have been reports of Borrelia burgdorferi (Bb), the bacterial agent of Lyme disease, triggering primary dementia, such as Alzheimer’s disease. Researchers who examined the records of 1,594 patients with dementia found that 1.25% had a positive intrathecal anti-Borrelia antibody index (AI), specific for neuroborreliosis. They concluded,

“Pure Lyme dementia exists and has a good outcome after antibiotics.” 1

By

In a retrospective study, entitled “Secondary dementia due to Lyme neuroborreliosis,” Kristoferitsch and colleagues describe several case reports of patients diagnosed with dementia-like syndromes due to Lyme neuroborreliosis or Lyme disease.2

Rapid improvement with antibiotic treatment

The authors’ case report featuring a 76-year-old woman demonstrates how Lyme disease can cause dementia-like symptoms. The patient developed progressive cognitive decline, loss of weight, nausea, gait disturbance and tremor over a 12-month period. She was referred to a neurology clinic for evaluation.

Three months earlier, the woman had been diagnosed with tension headaches and a depressive disorder. Medications, however, did not improve her symptoms.

Further testing revealed bilateral white matter lesions and an old lacunar lesion located at the left striatum. Extensive neurocognitive testing found “a severe decline of attention, memory and executive functions corresponding to subcortical dementia,” the authors write.

“LNB [Lyme neuroborreliosis] was diagnosed when further CSF [cerebral spinal fluid] examinations disclosed a highly elevated Bb-specific-AI indicating local intrathecal Bb-specific antibody synthesis,” Kristoferitsch writes.

After a 3-week course of treatment with ceftriaxone, the woman “recovered rapidly,” the authors write.

“In a telephone call in February 2018 at the age of 82 years, the patient reported no gait problems or cognitive impairment and had just returned from a trip to Cuba,” the authors write.

Woman admitted to psychiatric ward with severe dementia

A 71-year-old woman with rapidly progressing dementia and short periods of altered consciousness was admitted to a psychiatric hospital. Six months earlier, she was having mild forgetfulness.

MRI results, which indicated slight mesiotemporal atrophy, along with neurocognitive testing supported an initial diagnosis of primary dementia.

“Later, the patient’s daughter reported a tick bite followed by a widespread rash,” the authors write. “Thus, LNB [Lyme neuroborreliosis] was suspected and confirmed by CSF investigations.”

After 2 weeks of antibiotic treatment with ceftriaxone, the woman’s symptoms subsided and her cognition improved.

READ MORE: 80-year-old man with Lyme encephalopathy instead of dementia

At her 5-year follow-up visit, the woman’s “cognition was stable” and memory tests indicated a score above the mean for females her age, “which strongly argued against any dementing process,” the authors write.

In reviewing the literature, Kristoferitsch et al. identified several signs and symptoms that may indicate that Lyme neuroborreliosis (or Lyme disease) is causing dementia in a patient.

Distinguishing features of Lyme-induced dementia

  • Most of the patients or family members did not recall previous tick bites, an EM rash or symptoms of Lyme disease. Therefore, when “EM or other characteristic symptoms of early LB 1–2 years before the onset of dementia may if untreated serve as an indicator for chronic LNB.”
  • Unlike most neurodegenerative dementias, dementia caused by Lyme disease appears to progress rapidly, the authors write.
  • “Weight loss is another symptom observed in LNB [Lyme neuroborreliosis],” the authors explain. “It is also compatible with the diagnosis of AD [Alzheimer’s disease] but when it occurs in chronic LNB, it can be more pronounced, reaching up to 20 kg/year.” Weight loss in patients with Alzheimer’s disease is less prominent, the authors explain.
  • Headache, nausea, malaise and vomiting are typically not symptoms of degenerative dementias, the authors explain. But, “might be associated with secondary dementia and thus also with chronic LNB [Lyme neuroborreliosis].”
  • Gait disturbances at the onset or early in the disease which was observed in all cases of this study, makes the diagnosis of a probable AD [Alzheimer’s disease] uncertain or unlikely.”

Additionally, “In most patients, improvement of symptoms was reported already within a few days of antibiotic treatment,” Kristoferitsch writes.

Early recognition and treatment is important

The authors stress the importance of recognizing Lyme-induced dementia-like syndromes.

“It is essential to be aware of this manifestation of Lyme neuroborreliosis, because early antibiotic treatment will prevent permanent sequelae that may occur throughout the further course of the untreated disease,” the authors conclude.

Related Articles:

Reversible causes of dementia and normal pressure hydrocephalus

POTS patients with brain fog have neurocognitive deficits

Tick-borne encephalitis can lead to chronic illness

References:
  1. Blanc F, Philippi N, Cretin B, et al. Lyme neuroborreliosis and dementia. J Alzheimers Dis. 2014;41(4):1087-1093. doi:10.3233/JAD-130446
  2. Kristoferitsch W, Aboulenein-Djamshidian F, Jecel J, et al. Secondary dementia due to Lyme neuroborreliosis. Wien Klin Wochenschr. 2018;130(15-16):468-478. doi:10.1007/s00508-018-1361-9

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**Comment**

The proof is in the pudding. These patients were given treatment and they immediately improved. This is noted again and again with chronic Lyme patients – yet according to mainstream medicine led by the CDC and IDSA, this is a figment of our imaginations – otherwise known as PTLDS, an acronym they give complicated cases so they don’t have to deal with persistent infection, and therefore lengthy treatment.

It also allows them to continue to attempt to peddle their lucrative vaccine they continue to pull out of the hat every couple of years.

For more:  https://madisonarealymesupportgroup.com/2020/05/16/lyme-disease-awareness-month-kris-kristofferson-was-misdiagnosed-with-alzheimers-memory-loss-was-due-to-ticks/

For more:  

 

 

Category:

Alzheimer's, Lyme, research, Treatment

Northern Michigan Health Department Reports ‘Significant Increase’ in Lyme Disease Cases

https://www.mlive.com/news/2020/07/michigan-health-department-reports-significant-increase-in-lyme-disease-cases

Northern Michigan health department reports ‘significant increase’ in Lyme disease cases

BENZIE COUNTY, MI – A Northern Michigan health department is reporting a “significant increase” in Lyme disease cases this summer.

The Benzie-Leelanau District Health Department has 12 reported cases of the disease since June 1. Lyme Disease is caused by bacterium transmitted to humans through the bite of infected blacklegged (deer) ticks.  (See link for article)

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**Comment**

Please know that cases are wildly underreported due to poor testing which misses over half of all cases.

And, this only includes Lyme which is only the tip of the spear.  Ticks carry far more than just Lyme and often transmit numerous things simultaneously.

 

Category:

Lyme

Successful Treatment for Lyme Arthritis After Knee Surgery

https://danielcameronmd.com/treatment-for-lyme-arthritis/

SUCCESSFUL TREATMENT FOR LYME ARTHRITIS AFTER KNEE SURGERY

bandaged knee for treatment for lyme arthritis

This published case report by Wright and colleagues features what the authors believe is the “first patient with late Borrelia burgdorferi sensu stricto arthritis-related prosthetic joint infection. They suggest “the case highlights how early, prompt diagnosis and adequate antimicrobial therapy may obviate the need for additional aggressive orthopedic surgical intervention.”

By

Doctors described a 67-year-old avid outdoorsman who received treatment for Lyme arthritis after having had knee surgery. Ten months earlier, the man had received a partial knee replacement for his left knee due to advanced single compartment degenerative arthritis.

Over a 3-month-period, the man developed progressive left knee pain and swelling.  He later presented with a moderate joint effusion but did not have an erythema migrans rash, warmth, instability, or significant pain with range of motion.

There was no history of a tick bite or trauma to the knee nor was there evidence of joint effusion, infection, or Baker’s cyst.

Aspiration of his knee revealed turbid purulent pleocytosis with 91.8% neutrophils, elevated C-reactive protein, and a positive Borrelia burgdorferi polymerase chain reaction (PCR).

Serologic tests were positive for an elevated erythrocyte sedimentation rate (ESR), C-reactive 0.7, and a positive B. burgdorferi antibody enzyme immunoassay (EIA) test and 10 of 10 immunoglobulin G (IgG) Western blot bands were reactive.

Lyme arthritis diagnosis

Based on the detection of B. burgdorferi sensu stricto DNA by PCR, clinicians diagnosed the man Lyme arthritis, a particular type of periprosthetic joint infection (PJI).

The diagnosis was based on criteria established by the Musculoskeletal Infection Society and the Infectious Disease Society of America (IDSA).

“Although there was no communicating sinus tract or direct result from traditional microbiological culture, our patient met these criterion for PJI based upon elevated synovial fluid leukocyte count (>3000 cell/µL), elevated synovial neutrophil count (>65%), purulence, and evidence of a microorganism with identification to the level of genus and species,” according to Wright and colleagues from the Division of Infectious Disease, Department of Medicine, Memorial Medical Center in York, Pennsylvania.

The authors summarized their concern over the seriousness of a PJI. “Periprosthetic joint infection is a devastating complication following joint arthroplasty that causes significant morbidity with an estimated cumulative incidence of 1% – 2% for both hips and knees,” the authors write.

IDSA treatment guidelines not applicable

Wright and colleagues concluded that the IDSA recommendations were not applicable to this patient. They cited two guidelines that would have limited the types of treatment to oral antibiotics and duration to no more than four weeks. These included:
  1. “Late Lyme arthritis can usually be treated successfully with antimicrobial agents administered orally (e.g., doxycycline, amoxicillin, or cefuroxime) for 28 days in adult patients without evidence of neurologic disease.”
  2. “Previous studies have also been published demonstrating the efficacy of once-daily ceftriaxone (2 gram dose) for 14 or 28 days in the treatment of late Lyme disease.”

Successful treatment with antibiotics

The 67-year-old man received treatment for Lyme arthritis which included antibiotics rather than undergoing surgical incision and drainage or excision arthroplasty. Twice daily, 100 mg of oral doxycycline was initiated empirically for a week until testing confirmed the diagnosis. The treatment was converted to a six-week course of daily intravenous 2 grams of ceftriaxone.

The antibiotic treatment for Lyme arthritis was successful.

“Clinically, the patient had cessation of his knee pain, resolution of joint effusion, normalization of synovial infection and inflammatory parameters, and negative end-of-therapy detection of B. burgdorferi DNA by PCR,” according to Wright.

However, the authors cautioned that their strategy of prolonged intravenous antibiotics might not be effective in other types of joint arthroplasties.

“Although this patient’s clinical outcome was achieved without the need for surgical incision and drainage or staged excision arthroplasty procedure, it is unclear whether this same strategy would produce similar results in patients with other types of joint arthroplasties,”

Are there any other cases of arthroplasties that might be prevented by antibiotic therapy? More than 82,660 patients underwent total knee arthroplasty (TKA) across the Medicare and United Health Care populations from 2009 to 2011 at a cost exceeding $10 billion per year. [2]

Authors’ Conclusion

“This case highlights how early prompt diagnosis and adequate antimicrobial therapy may obviate the need for additional aggressive orthopedic surgical intervention,” stressed Wright.

“This case also highlights the value of an aggressive need to further investigate and interpret unexpected findings in clinical practice.”

Related Articles:

5 cases of Lyme arthritis following an operation

Will steroid injections help children with Lyme arthritis of the knee?

Preventing unnecessary surgery for children with Lyme arthritis

References:
  1. Wright WF, Oliverio JA. First Case of Lyme Arthritis Involving a Prosthetic Knee Joint. Open Forum Infect Dis, 3(2), ofw096 (2016).
  2. Cohen JR, Bradley AT, Lieberman JR. Preoperative Interventions and Charges Before Total Knee Arthroplasty. J Arthroplasty, (2016).
  3. Fallon BA, Keilp JG, Corbera KM et al. A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology, 70(13), 992-1003 (2008).
  4. Cameron DJ. Consequences of treatment delay in Lyme disease. J Eval Clin Pract, 13(3), 470-472 (2007)

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**Comment**

I wish there were more doctors questioning and overriding the extremely limited CDC Lyme “Guidelines” as they are inadequate for nearly everyone – unless it’s an acute case.

Speaking of IV ceftriaxone, IDSA founder Dr. Waisbren successfully used high doses (6-8gms) in his patients, despite the smear campaign against it:  https://madisonarealymesupportgroup.com/2017/07/09/idsa-founder-used-potent-iv-antibiotics-for-chronic-lyme/

https://madisonarealymesupportgroup.com/2017/06/23/no-bias-in-mmwr-for-any-other-infectious-disease-requiring-iv-antibiotics-except-for-lyme/

For more:  https://madisonarealymesupportgroup.com/2019/04/11/latent-lyme-disease-resulting-in-chronic-arthritis-early-career-termination-in-a-u-s-army-officer/

https://madisonarealymesupportgroup.com/2020/02/08/a-joint-effort-the-interplay-between-the-innate-and-the-adaptive-immune-system-in-lyme-arthritis/

 

Category:

Lyme, research, Testing, Treatment