Archive for the ‘Lyme’ Category

Emerging Tick-Borne Diseases & Blood Safety: Summary of a Public Workshop

https://pubmed.ncbi.nlm.nih.gov/32208532/

. 2020 Mar 24.

doi: 10.1111/trf.15752. Online ahead of print.

Emerging Tick-Borne Diseases and Blood Safety: Summary of a Public Workshop

Krishna V K Mohan 1, David A Leiby 1
Affiliations expand

Abstract

Tick-borne agents of disease continue to emerge and subsequently expand their geographic distribution. The threat to blood safety by tick-borne agents is ever increasing and requires constant surveillance concomitant with implementation of appropriate intervention methods. In April 2017, the Food and Drug Administration organized a public workshop on emerging tick-borne pathogens (excluding Babesia microti and Lyme disease) designed to provide updates on the current understanding of emerging tick-borne diseases, thereby allowing for extended discussions to determine if decisions regarding mitigation strategies need to be made proactively. Subject matter experts and other stakeholders participated in this workshop to discuss issues of biology, epidemiology, and clinical burden of tick-borne agents, risk of transfusion-transmission, surveillance, and considerations for decision making in implementing safety interventions. Herein, we summarize the scientific presentations, panel discussions, and considerations going forward.

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**Comment**

I only had access to the abstract, but Dr. Cameron writes more fully on the workshop here:  https://danielcameronmd.com/babesia-infection-transmitted-blood-supply/

Interestingly, according to the abstract, they excluded Babesia and Lyme, which are arguably two of the largest problems. It was pointed out that 200 cases of Babesia were transmitted through blood transfusions at the time of the workshop and that Anaplasma is next with increasing clinical cases.

Evidently there have been no reported cases of Lyme transmitted through the blood supply.

 

Other tick-borne pathogens have been transmitted through donated blood, but these occurrences are rare. (Or rarely reported)

  • 11 cases: A. phagocytophilum, responsible for Anaplasmosis (transmitted by the Ixodes ticks)
  • 2 cases: Tick-borne encephalitis virus complex (TBEV, Powassan virus, DTV), (transmitted by the Ixodes ticks)
  • 1 case: Colorado tick-fever virus (transmitted by Rocky Mountain wood ticks)
  • 1 case: Rickettsia rickettsii, the agent of Rocky Mountain Spotted Fever (transmitted by the Lone Star tick)
  • 1 case: Ehrlichia ewingii (transmitted by the Lone Star tick)

In addition, “two emerging [tick-borne agents] − B. miyamotoi and Powassan virus were discussed − for B. miyamotoi,cases have steadily increased since 2014.”

For more:  https://madisonarealymesupportgroup.com/2019/07/28/tick-borne-infection-risk-in-blood-transfusion/

https://madisonarealymesupportgroup.com/2018/10/11/transfusion-transmitted-babesiosis-one-states-experience/

https://madisonarealymesupportgroup.com/2017/08/08/transfusion-transmitted-babesiosis-in-nonendemic-areas/

https://madisonarealymesupportgroup.com/2019/05/26/fda-recommends-testing-for-tick-borne-illness-in-donated-blood-a-big-duh/

https://madisonarealymesupportgroup.com/2016/06/02/study-showing-results-testing-babesia-microti/

 

Category:

Anaplasmosis, Babesia, Ehrlichiosis, Lyme, research, Rickettsia, Rocky Mountain Spotted Fever, Testing, Transmission, Viruses

Disulfiram for Lyme Disease: Profiles of Two Patients Reporting Good Outcomes

https://www.lymedisease.org/shea-disulfiram-lyme-disease/

June 3, 2020

Disulfiram for Lyme disease: profiles of two patients reporting good outcomes

Jennifer Shea

by Jennifer Shea

In 2016, I had a flu-like illness with a sudden onset of neck and back pain. I suspected Lyme disease, so my physician ordered the two-tiered test. It was negative.

Thus began a two-year quest to find the cause of my unrelenting neck pain and a growing list of other symptoms. By 2018, I could barely function.

Fortunately, I found an excellent Lyme-literate practitioner, who diagnosed me with Lyme and babesiosis. Over the next two years, with antibiotics, herbal supplements, and other treatments, my health improved greatly. But I continued to relapse.

Recently my practitioner suggested disulfiram. It’s an old drug that has recently been re-purposed to treat Lyme disease. I needed to know more about it before committing. So, I started reading up on It.

I discovered that in 2016, Stanford researchers screened a lot of drugs currently approved for other uses, to see if any were effective against Borrelia burgdorferi (Bb), the bacteria that causes Lyme disease.

Disulfiram emerged as a highly active compound against Bb grown in lab culture plates. This suggested the drug might effectively treat Lyme in humans.

In 2019, Dr. Kenneth Liegner published a paper reporting on patients with Lyme and babesiosis who were successfully treated with disulfiram. Since then, an increasing number of practitioners have prescribed it for this purpose.

I also learned that disulfiram can cause toxic side effects. I joined several Facebook groups for Lyme patients using disulfiram. I scoured their posts to learn from their experiences–both positive and negative. What I learned there helped me decide to take the plunge and try disulfiram for myself.

Here are two stories of successful outcomes from members of the Facebook groups. Their names have been changed for privacy.

Susan

Susan, 59, recalls many tick bites and isn’t sure which one infected her. However, she began to notice symptoms while attending prep school on Long Island, NY, in 1976. At that time, she was also diagnosed with endocarditis, an infection of the inner lining of the heart chambers and valves.

Over the next few decades, she had surgeries to address abdominal pain and endured many unexplained symptoms. In 2006, her health rapidly declined even more. Her symptoms included flu-like illness, brain fog, widespread pain, and fatigue that at times left her bedridden and wheelchair-bound. She consulted a Lyme-literate physician (LLMD), tested positive for Lyme, and was diagnosed with babesiosis and Bartonella based on her symptoms.

Susan was treated with herbs as well as oral, injectable, and IV antibiotics. Gradually, her health came back to about 80% of her pre-Lyme status. But she would relapse whenever she stopped taking antibiotics.

She started taking disulfiram in 2019 at a dose of 125 mg, gradually increasing to a target dose of 250 mg, based on her weight of 150 lbs. She maintained her target dose for three months then increased to 375 mg for the final two weeks. She finished taking the drug in mid-April 2020, having been on it for five and one-half months in total.

Susan’s symptoms got significantly worse after the first dose. Pain in areas of her body previously affected by Lyme and co-infections intensified. She also experienced insomnia, mood swings, and skin lesions while on the drug.

“It was like a roller coaster with bad days right up to the end,” she said. She hallucinated at one point after discontinuing disulfiram.

However, now that she has completed the course of disulfiram, Susan feels that she’s back to about 95% of her pre-Lyme status. Her brain fog has cleared, her energy and stamina are normal, and her pain and other symptoms are greatly improved. She has some lingering abdominal, eye, and ear pain, but her activities are no longer restricted. She can exercise strenuously and works full-time without fatigue.

Laura

Laura, 54, was bitten by a tick in Rhode Island in 2016. She noticed a bull’s-eye rash shortly afterward. She tested positive for Lyme through LabCorp and was prescribed 21 days of doxycycline, which resolved her symptoms.

In 2017, she relapsed and consulted with a LLMD who also diagnosed her with babesiosis. She was treated with various oral antibiotics for Lyme and with Mepron (atovaquone) for babesiosis. The babesiosis symptoms resolved, but she experienced Lyme relapses every 5-6 months after discontinuing antibiotics.

Upon hearing about disulfiram, she brought information to her general practitioner who agreed to prescribe the drug. Laura had been sick for four years at this point. Her chief symptoms were brain fog, headaches, insomnia, muscle aches, and mood changes.

Laura took disulfiram in regular tablet form beginning at a dose of 250 mg with a target dose of 500 mg based upon her weight of 200 lbs. She felt better immediately, so she rapidly increased to 500 mg on the fifth day but dropped to 250 mg after 45 days as she felt the lower dose was equally effective and she had been without symptoms for the previous 20 days.

She took disulfiram for 66 days total. In addition, she took taurine, ornithine, dihydromyricetin, Alka Seltzer Gold®, sumatriptan and glutathione. She didn’t alter her diet other than avoiding alcohol and fermented foods. (Patients on disulfiram are advised to avoid vinegar, fermented foods, and anything with alcohol.)

Laura had adverse reactions to eating salsa, pickled peppers, and salad dressing–all of which contained vinegar. At times, especially at a dose of 500 mg, she experienced intense headaches, fatigue, dizziness and muscle aches which disappeared at day 60.

When exerting herself, she noticed an odor similar to onions that some report with use of the drug. Laura found it best to take disulfiram at night, to sleep through any resulting symptoms.

At the conclusion of treatment in October 2019, Laura was symptom-free and remains so at the time of this writing. She can now do many activities that she previously could not, including yoga, gardening, sports, and full-time work.

Both Facebook group members state that, although the course of treatment was difficult, it was life-changing. They started at doses higher than those reported by many in the disulfiram for Lyme Facebook groups. Those with less efficient detoxification pathways are more likely to experience toxic side effects, so caution is warranted.

As for my story? I’ve just started taking disulfiram, so it remains to be written. But it’s encouraging to know that disulfiram may hold promise for the treatment of some patients with Lyme and babesiosis.

Note: This information is not intended nor implied to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment or discontinuing an existing treatment. Talk with your healthcare provider about any questions you may have regarding a medical condition.

Jennifer Shea lives in Longmeadow, Massachusetts.

References

  1. Pothineni VR, Wagh D, Babar MM, et al. Identification of new drug candidates against borrelia burgdorferi using high-throughput screening.Drug Des Devel Ther. 2016;10:1307-1322. doi:10.2147/DDDT.S101486
  2. Pothineni VR, Wagh D, Babar MM, et al. Screening of nci-dtp library to identify new drug candidates for borrelia burgdorferi.J Antibiot. 2017;70(3):308-312. doi:10.1038/ja.2016.131
  3. Liegner KB. Disulfiram (tetraethylthiuram disulfide) in the treatment of Lyme disease and babesiosis: Report of experience in three cases. Antibiotics. 2019;8(2):72. doi:10.3390/antibiotics8020072
  4. Kinderlehrer DK. Many patients find disulfiram a “game-changing” Lyme treatment. LymeDisease.org. https://www.lymedisease.org/disulfiram-kinderlehrer-2/. Published November 20, 2019. Accessed May 21, 2020.

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For more:  https://madisonarealymesupportgroup.com/2020/05/26/potential-patient-reported-toxicities-with-disulfiram-treatment-in-late-disseminated-lyme-disease/

https://madisonarealymesupportgroup.com/2019/11/19/if-disulfiram-is-the-cure-for-lyme-disease-should-it-be-prescribed-to-all-lyme-disease-patients/

https://madisonarealymesupportgroup.com/2019/06/03/disulfiram-in-the-treatment-of-lyme-babesiosis-3-case-reports/

https://madisonarealymesupportgroup.com/2019/07/14/disulfiram-breakthrough-drug-for-lyme-other-tick-borne-diseases/

https://madisonarealymesupportgroup.com/2019/07/26/is-disulfiram-the-magic-bullet-for-chronic-lyme-disease/

https://madisonarealymesupportgroup.com/2019/10/15/disulfiram-psychosis-update/

https://madisonarealymesupportgroup.com/2019/10/27/disulfiram-psychosis-update-2/

https://madisonarealymesupportgroup.com/2019/09/18/dr-liegner-interview-on-disulfiram/

 

Category:

Lyme, Treatment

Treating Psychiatric Lyme Symptoms With Disulfiram

https://www.lymedisease.org/disulfiram-psychiatric-bransfield/

TOUCHED BY LYME: Treating psychiatric Lyme symptoms with disulfiram

Dr. Robert Bransfield, Psychiatric Lyme disease

Kristina Bauer, a Lyme advocate, patient and mother of four children with congenital Lyme disease, is the founder of the Texas Lyme Alliance.

After she became interested in the use of disulfiram for treating Lyme disease, she started a Facebook support group called Disulfiram Experience for Lyme and a website called Disulfiram for Lyme.

The website features several video interviews with doctors and researchers about treating Lyme with disulfiram. In her latest one, she interviews psychiatrist Robert Bransfield MD, a leading expert on how Lyme disease affects the brain–and how he has found that disulfiram can help.

(Disulfiram, also known as Antabuse, was used for decades to help treat alcoholism. It has recently been repurposed to treat Lyme disease. Read more about the drug here.)

Dr. Bransfield is an expert on Lyme-related suicide. While no formal statistics are kept on what contributes to the 45,000 suicides per year in the United States, he estimates that some 1200 are likely attributable to depression and other brain manifestations that can result from chronic Lyme disease.

For over 30 years, he has treated Lyme patients who have psychiatric symptoms. Since 2018, he has put more than 60 of them on disulfiram, with good results.

Watch the interview here:

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.

Related Posts:

  1. A patient interviews Dr. Kinderlehrer about disulfiram for Lyme disease
  2. TOUCHED BY LYME: Ignoring psychiatric Lyme disease at our peril
  3. What is disulfiram and why is it sparking excitement in Lyme community?
  4. Disulfiram–breakthrough drug for Lyme and other tick-borne diseases?

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**Comment**

I’m so thankful many patients are improving on disulfiram.  Make sure you discuss side-effects with your doctor; however, as some like myself went into psychosis:  https://madisonarealymesupportgroup.com/2019/10/15/disulfiram-psychosis-update/  Being at risk doesn’t mean necessarily that it isn’t for you.  There are  numerous steps you can take to mitigate this side-effect.

Also, reports are coming in that patients can experience depression after stopping disulfiram treatment. Please discuss this as well with your doctor and consider titrating slowly off it just as you titrated up to a full dose.

Category:

Lyme, Psychological Aspects, Treatment

Bitten By Tick in 2007 – Still Dealing With Symptoms

https://www.health.com/condition/lyme-disease/tick-bite-chronic-lyme-disease-symptoms

This Woman Was Bitten by a Tick in 2007—and She’s Still Dealing With Chronic Lyme Disease Symptoms

‘If I overdo it, Lyme rears its beastly, ugly head.’

By Stephanie Buice as told to Dana Hudepohl

May 28, 2020

There are days I feel as though my body is constricted by a thousand weighted blankets, and I can’t even lift my foggy head off the pillow, let alone carry on a coherent conversation with my husband or daughters. Days my muscles burn like they’re on fire, my bones cry out as if they are being crushed in a crematorium, and I am left bawling on the floor in the fetal position. On days like that, my husband scoops me up and puts me in an Epsom salt bath. Some days, when I’m in a flare, I feel like I am dying inside. It is a battle I will be fighting for the rest of my life.

Now I know I have what some clinicians and researchers are calling chronic Lyme disease, a tickborne infection that took a decade of my life to properly diagnose.  (See link for article)

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**Comment**

Important quote:

Ultimately, she diagnosed Epstein Barr and leaky gut, which she treated through diet, lifestyle changes, and supplements. A conventional Lyme test came back negative. She said that we could go ahead and treat for Lyme since it could be a false negative, but I wasn’t ready to take that step without a definitive diagnosis.

This right here is the problem….

First, I’m impressed the doctor was willing to treat her despite the negative test. Perhaps word is finally making it around; however, the patient’s refusal to treat due to wanting a definitive diagnosis is pretty common.  They just don’t get it.

It’s up to us to educate the public on how devastating tick-borne illness is because it’s the only way procrastination to get treatment is going to change.  This isn’t like other diseases where you go in get a definitive test and then start treatment.  This is like catching a greased pig in an oil factory.  

This “wait and see” approach is ruining peoples’ lives and must end.  If you are bitten by a tick, treat immediately – before any tests can even be taken and get back.  Trust me when I say it’s a lot easier to support the brief negative impact of antibiotics than it is to treat something that can disable you and cause you pain of a magnitude you’ve never experienced before.

For more:  https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/

 

Category:

Lyme, Ticks, Uncategorized

Reducing the Burden of Lyme Disease

https://lymediseaseassociation.org/wp-content/uploads/2020/05/MFP-Spring-Lyme-Disease-Article.pdf  (Full article here)

Elizabeth L. Maloney, MD Publishes on Reducing the Burden of Lyme Disease

Elizabeth L. Maloney, MD, President, Partnership for Tick-Borne Diseases Education Family Medicine Physician, Wyoming, MN
Elizabeth L. Maloney, MD, President, Partnership for Tick-Borne Diseases Education Family Medicine Physician, Wyoming, MN

Elizabeth L. Maloney, MD, President of the Partnership for Tick-Borne Diseases Education and Family Medicine Physician in Wyoming, MN published a paper titled “Reducing the Burden of Lyme Disease” in Minnesota Family Physician. It includes discussion of tick bite management, early treatment, and shared decision-making.

In the article, Dr. Maloney highlights the expensive cost of Lyme disease, stating that, “Nationwide, the annual direct medical costs could reach 1.3 billion dollars” and calls attention to the disadvantages in research the illness has suffered, as well as clinical trial evidence that is “generally scant and/or of low quality”.

The author advises that, “Blacklegged tick bites acquired in Minnesota carry a significant risk of Lyme disease,” and offers guidance for making decisions regarding antibiotic prophylaxis of asymptomatic bites.

Maloney stresses the importance of early treatment and writes,

“Early Lyme disease, when promptly diagnosed and appropriately treated with antibiotics, is curable.” Above all, she states, “the risks and benefits of all options should be discussed with patients in the setting of shared decision-making in order to arrive at a therapeutic plan that fits both the clinical circumstances and the patient’s goals and values.”

(See top link for full article)

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**Comment**

Early treatment is imperative; however, doctors still take a “wait and see” approach after patients get bitten by a tick. This approach is maiming thousands of people and needs to change. ILADS recommends 20 days of doxycycline for an acute tick bite, but it’s important to keep track of any symptoms as many coinfections will not be covered under that particular mono-therapy.  Also, remember that testing is wrong half the time.

For a great resource:

https://madisonarealymesupportgroup.com/2020/04/21/help-i-got-bit-by-a-tick-what-do-i-do/  (Put this somewhere safe so you can access it if you need to)

This is what appropriate Lyme disease treatment looks like:  https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/

Category:

Lyme, Testing, Ticks, Treatment