Archive for the ‘Treatment’ Category

Disulfiram-breakthrough drug for Lyme & Other Tick-borne Diseases?

https://www.lymedisease.org/disulfiram-kinderlehrer/

Disulfiram–breakthrough drug for Lyme and other tick-borne diseases?

By Daniel A. Kinderlehrer MD

I have been practicing medicine long enough to be very skeptical of “breakthroughs.” But disulfiram may be the real thing. Let’s keep our fingers crossed.

Anyone who reads the financial pages has heard of Steven Cohen, the multi-billionaire hedge fund manager and philanthropist. Cohen lives in Connecticut where his wife, Alexandra, became ill with Lyme disease.

The Cohens established the Cohen Lyme and Tick-borne Disease Initiative, a division within their philanthropic organization focused on supporting Lyme and tick-borne disease research. The Steven and Alexandra Cohen Foundation has committed over $60 million dollars to support more than 25 Lyme disease research projects.

In 2016, the Cohen Foundation sponsored the first annual “Lyme Disease in the Era of Precision Medicine Conference” at the Mount Sinai School of Medicine in New York.

Those of us who actually treat Lyme disease know there is nothing precise about it. Treating chronic infection with Borrelia burgdorferi, complicated by any number of co-infections, is often hit or miss. Nevertheless, we who practice where the rubber meets the road are grateful for whatever clues basic researchers provide that can help our patients.

At that conference, Kim Lewis, leader of Northeastern University’s Antimicrobial Discovery Center, presented data on the relative effectiveness of different antibiotics against Borrelia burgdorferi in his laboratory.[1] Lewis was testing different pharmaceuticals against Bb, and one of the drugs he tested was disulfiram, also known as Antabuse.

Disulfiram

What is disulfiram? Let’s take a step back. If you drink alcohol, your body converts it to acetaldehyde via the enzyme alcohol dehydrogenase. Acetaldehyde is then broken down to acetic acid via the enzyme acetaldehyde dehydrogenase:

Disulfiram inhibits the enzyme acetaldehyde dehydrogenase, leading to a buildup of acetaldehyde.

This is bad news if you drink alcohol, because acetaldehyde is responsible for the symptoms we know of as hangovers. This drug is prescribed to alcoholics as a deterrent to drinking alcohol, since having just one drink will result in a vicious headache.

It turns out disulfiram has known activity as an antimicrobial. Studies have demonstrated its action against gram-positive bacteria such as Staphylococcus and Streptococcusspecies[2] as well as Plasmodium falciparum, a.k.a. malaria.[3]

Number one against Bb

In 2016, Venkata Raveendra Pothineni and colleagues at Stanford reported on new drug candidates against Borrelia burgdorferi using a technique known as high-throughput screening.[4] They ranked disulfiram as number one in activity against Bb among their top 20 hits.

On the basis of Pothineni’s work, Lewis compared the activity of disulfiram against a few other well-known drugs used in the treatment of Lyme disease. In his talk at the Precision Medicine conference, Lewis showed a slide that looked like this:

This bar graph depicts the number of colonies remaining after treating Bb with the following four drugs: doxycycline, ceftriaxone, vancomycin, and disulfiram. It is clear that vancomycin is a powerful drug to treat Lyme disease. But disulfiram completely sterilized the culture—there were no persisters! The mechanism of action of disulfiram as an antimicrobial is still unclear.

The effectiveness of an antibiotic in the laboratory does not always translate to its effectiveness in people. Furthermore, there have been no animal or human studies researching the efficacy of disulfiram in the treatment of Lyme disease.

A willing patient

But a patient of Dr. Ken Liegner of Pawling, New York, saw the lecture by Dr. Kim Lewis on YouTube and asked to be treated with disulfiram. This patient had been infected in May 2008, and diagnosed with Lyme disease and babesiosis. He was treated aggressively with oral antibiotics as well as intravenous gamma globulin (IVIG), since his serum level of IgG antibodies was low.

After nine years of treatment, the patient had improved substantially. However, any attempt to decrease or discontinue his antibiotics resulted in a relapse of his multi-systemic symptoms within two weeks.

Dr. Liegner explained to the patient that there were no studies investigating disulfiram in the treatment of Lyme disease. But he agreed to treat the patient with appropriate monitoring of his lab tests. The patient began disulfiram 500mg daily and simultaneously discontinued his previous antibiotic regimen. After four months on this regimen, the patient declared, “I’m cured!” and stopped treatment.

Interestingly, the patient had had a psychiatric hospitalization during treatment, which he related to significant situational stress. Dr. Liegner was concerned because there have been rare reports of disulfiram causing psychiatric problems. The patient did not think it was the drug, and said, “Even if it was responsible, it was worth it! Don’t fail to offer it to people just because of that!” The patient has continued to be symptom-free over two years later.

Highly effective

Dr. Liegner has reported the results of treating his first three patients with disulfiram in a recent article published in the journal “Antibiotics.”[5]  I encourage readers to check it out. He now has over 30 patients on this treatment, and he is impressed with how highly effective it is for both Lyme disease and babesiosis.

Since disulfiram has been shown to kill Plamodium falciparum (malaria) in the laboratory, it is not surprising that it would also be effective against Babesia. Dr. Lewis is planning to do a study on mice infected with Bb. In addition, Dr. Brian Fallon at Columbia University has announced his intention to undertake a controlled trial using disulfiram in well-characterized patients with Lyme disease. (Click here for more information about the clinical trial.)

Bartonella too?

There is a possibility that disulfiram is also active against Bartonella. Anecdotally, I have two patients who appear to have had Bartonella Herxheimer reactions when they began disulfiram. Additionally, there is a Facebook group among people who are on this medication, and the experience of some members has led them to believe that disulfiram hits Bartonella[6].

Thus far, my clinical experience with disulfiram is not extensive, but I am clearly seeing benefits as well as Herxheimer reactions. Because of the Herxheimer reactions, it is best to start slowly. The medication comes in tablets that are 250 mg and 500 mg. Starting doses are usually 67.5mg or 125 mg every three days, with increasing doses every two weeks if well tolerated. The full dose for an average adult is 500 mg daily.

The exciting news is that Dr. Liegner has found that many patients can stop the medication after four to six months and continue to stay in remission. It is recommended to check liver tests periodically, but disulfiram has a relatively low risk profile and few drug interactions. It is also inexpensive.

I am still skeptical about breakthroughs, but there is reason to be optimistic that disulfiram may be a game changer. Let’s keep our fingers crossed.

Dr. Dan Kinderlehrer is an internal medicine physician with a private practice in Denver, Colorado, devoted to treating patients with tick-borne illness. He is the author of the forthcoming book, “Recovery From Lyme: The Integrative Medicine Guide to the Diagnosis and Treatment of Tick-Borne Illness.” It will be released next year.

References

[1] Lewis, K.K.S. Lyme Disease in the Era of Precision Medicine. Available online: https://www.youtube.com/watch?v=aUlKTnrGPgc (Accessed July 7, 2019)

[2] Long TE. Repurposing Thiram and Disulfiram as Antibacterial Agents for Multidrug-Resistant Staphylococcus aureus Infections. Antimicrob Agents Chemother. 2017;61(9):e00898-17.

[3] Scheibel LW, Adler A, Trager W. Tetraethylthiuram disulfide (Antabuse) inhibits the human malaria parasite Plasmodium falciparum. Proc Natl Acad Sci U S A. 1979;76(10):5303-7.

[4] 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;10:1307-22.

[5] Liegner KB. Disulfiram (Tetraethylthiuram Disulfide) in the Treatment of Lyme Disease and Babesiosis: Report of Experience in Three Cases. Antibiotics (Basel). 2019 May 30;8(2). pii: E72. doi: 10.3390/antibiotics8020072.

[6] https://www.facebook.com/groups/246058769631937

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

https://madisonarealymesupportgroup.com/2019/04/17/global-lyme-alliance-doing-kick-butt-research/

 

Category:

Babesia, Bartonella, Lyme, research, Treatment

Is it Bartonella?

Bartonella is Hard to Diagnose in Chronic Lyme Disease

In this article Dr. Marty Ross describes how to diagnose Bartonella in chronic Lyme disease. There are a lot of controversies in this area. These include:

  • whether Bartonella is transmitted by ticks,
  • poor testing, and
  • a wide range of symptoms that look like other illnesses.

See link for more:  https://www.treatlyme.net/guide/diagnose-bartonella

For more on Bartonella: 

https://madisonarealymesupportgroup.com/2018/05/07/fox-news-bartonella-is-the-new-lyme-disease/

https://madisonarealymesupportgroup.com/2019/05/09/bartonella-transmitted-to-children-at-birth-causing-chronic-infections/

https://madisonarealymesupportgroup.com/2019/04/24/human-bartonellosis-an-underappreciated-public-health-problem/

https://madisonarealymesupportgroup.com/2019/02/27/advanced-imaging-found-bartonella-around-pic-line/

https://madisonarealymesupportgroup.com/2018/05/24/help-support-the-study-of-bartonella/  Chip in and help Dr. Ericson with Bartonella research. Ericson has a vested interest in getting to the bottom of this tenacious pathogen – her son has chronic bartonellosis.

https://madisonarealymesupportgroup.com/2016/12/29/cardinal-state-bartonella/

https://madisonarealymesupportgroup.com/2019/02/06/uh-study-shows-hawaii-kids-more-vulnerable-to-bartonella/

https://madisonarealymesupportgroup.com/2019/03/24/cat-scratch-disease-caused-teens-schizophrenia-like-symptoms-report-says/

 

Category:

Bartonella, Testing, Ticks, Treatment

Lyme, Alzheimer’s, Enbrel – New Potential Treatment

http://lymemd.blogspot.com/2019/06/lyme-alzheimers-enbrel-new-potential.html

Thursday, June 6, 2019

By Dr. Jaller

Lyme, Alzheimer’s, Enbrel — New Potential Treatment

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I have learned that most people want a simple sound bite answer or conclusion. The edges of medicine always operate in the grey and nuanced.

It has long been dogma in Lyme circles that immune suppressing drugs, e.g. Enbrel are very dangerous and should not be used.  The same is true with prednisone.

I have patients who get the occasional injection by their rheumatologist; joint pain gets better and they are no worse for the wear.

The drug is used for psoriasis amongst other many other conditions. The drug has serious side effects: its use should not be taken lightly.

A study suppressed by Pfizer, brought to light by the Washington Post, was based on insurance company data considering outcomes of  hundreds of thousands of patients and found those taking Enbrel had a 64% decrease in the incidence of Alzheimer’s disease. 

Enbrel impairs the function of TNF alpha, a master cytokine responsible for trafficking immune cells.

Pfizer did not make the disclosure because: a generic version will be  available.  A shiny new, me-too drug promoted heavily by pharm reps costing obscene amounts of money will take its place. Doctors will be given shiny data, along with lunch, proving equivalency? with the old drug.

The myth that generics are poor (dangerous) and lack quality control may be resurrected.

Watch out for first year generic prices: cute trick. For the first year a single company is given a monopoly and only required to reduce the price by 20%.  “See, the generic is almost as cheap as the brand,” the rep will inform a doctor. This is a bad pro big-pharma rule passed by Congress decades ago I’m sure) by the way. Cheap is a relative term.

The pharmaceutical giant, Pizer has excuses, reasons why it withheld the data, for example, they  claimed the data is wrong because of biological plausibility: the molecule is too large to cross the blood brain barrier.

Really? I care if the molecule gets into the brain; maybe it’s an advantage.  The brain has its own immune system which needs to be tweaked lightly. Ask anyone who has had a brain Herxheimer reaction knows. The Cytokine storm which may make you crazy results from peripheral cytokine reactions/overproduction primarily.  And there is no data the molecule cannot get into the brain. Cytokines get in the brain.

Alzheimer’s is in part motivated by inflammation. Other major factors are: production of amyloid beta protein (AB) (plaques and tangles), genetic factors and multiple external factors.

It is thought that AB protein is a naturally occurring antibiotic which responds to inflammation. Discussed elsewhere. Lyme resides in the brain along with many  bacteria, viruses, protozoans. It is true that spirochetes have been reported to aid in the transportation of AB into the brain.  Infection (or colonization) may be omnipresent and therefore not the whole story — or the most critical piece.

The vast majority of my patients present with cognitive complaints. Many or most Lyme patients, at one time or another fit the criteria for a disorder call MCI, minimal cognitive impairment. The mainstream medical community considers this a pre-Alzheimer’s condition, often.

What’s a Lyme patient to do?

First off, if symptoms completely resolve with usual therapy do nothing.

If you are a patient who has had very aggressive therapy, e.g. months of IV antibiotics and cognitive symptoms persist, look up MCI and consider the following:

Get an AB PET. The tests measures metabolic activity in the brain and the presence of early AB protein deposition. IF the test is positive you are at very high risk for developing Alzheimer’s.

Prednisone and Enbrel have largely been seen as dangerous because patients are misdiagnosed and not also treated for Lyme. Enbrel is likely tolerably safe, in many cases, considering benefit to risk ratio.

A lot of money has been spent searching for an Alzheimer’s cure. To no avail. Nothing very promising in the literature.

I for one am very angry with Pfizer. I suppose it is typical behavior in the industry. We still need big pharma. Don’t throw out the baby with bathwater. Hold them accountable. But, do not  conclude big pharma is corrupt therefore all drugs developed through the system are fruit of a poisoned tree and are therefore inherently untrustworthy and dangerous — in addition to being immorally overpriced.

It’s a bad syllogism. Drug companies are a very necessary evil.

Getting back to Enbrel.  Is this a silver bullet?.  More comment, biostatistics and analysis are required as well as prospective RCT medical studies. Since the drug will be generic soon big pharma will not finance the research. Fortunately, Alzheimer’s, a burgeoning epidemic as our population ages, is well funded through private sources.

Ideal prospective studies, which will likely be done make observations moving forward starting with a baseline current population. The process is slow.

Retrospective, population studies, primarily manipulation of data already there will not take long. These studies are never as good as prospective studies but perhaps good enough.

If you want my  bottom line: don’t run out and get Enbrel– YET.

I am not endorsing the use of the drug for any medical condition, including Alzheimer’s. This site is for informational purposes only. Medical care can only be delivered by a certified medical practioner who properly evaluates your particular issues. Please don’t diagnose or treat yourself. 

http://www.drjaller.com Dr. Jaller’s practice is in Maryland
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Regarding immune suppressants, many LLMD’s use them IF the patient is also on antimicrobial therapy at the same time. This tandem usage will protect the patient from a worsening infection(s), be it Lyme or any of the coinfections or even a latent infection.
Talk with your doctor about all treatments.

Category:

Alzheimer's, Lyme, Psychological Aspects, Treatment

Are Lyme Disease & Anxiety Connected? Dr. Rawls

https://rawlsmd.com/health-articles/lyme-disease-anxiety-connected?

Are Lyme Disease and Anxiety Connected?

by Dr. Bill Rawls
Posted 6/21/19

Can Lyme disease cause anxiety? In this video, Dr. Bill Rawls explains how the stress of chronic illness impacts adrenaline levels and mood. Plus, he shares natural remedies for anxiety and lifestyle tips for short-circuiting an overactive flight-or-fight response. Read all about Dr. Rawls’ natural approach to overcoming Lyme disease here.

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Video Transcript

Question: Are Lyme disease and anxiety connected?

Hello, I’m Dr. Bill Rawls. A question: How is Lyme disease related to anxiety?

Most people are really struggling with anxiety and sleep disturbances who have chronic Lyme disease. And the reason is that Lyme disease — the stress of Lyme disease — makes you less resistant to any kind of stress. It lowers your reserves.

So your body is stressed, and whenever your body is stressed, you activate your sympathetic nervous system, your fight-or-flight nervous system. And that’s really designed to use intermittently when there’s a real emergency, like somebody breaking into your house at 3:00 in the morning. You want that surge of adrenalinethat wakes you up, gets you going, and helps you deal with that emergency.

But when your body is stressed, when the chronic illness is generating inflammation, and the microbes are disrupting everything in your body, your body becomes less stress-resistant, and it activates your fight-or-flight response chronically. If you’ve got adrenaline pushing through your system all the time, it makes your system very, very fragile.

Anything that would cause anxiety is very apt to generate that kind of response — you feel anxious, you feel revved up all the time. You’ve got that adrenaline surging through your system.

It affects your sleep, and then not getting sleep actually affects the immune disruption that would generate that. So the whole thing becomes this vicious cycle that’s never-ending.

Breaking that cycle: The first step is controlling those microbes, restoring normal immune system functions, but also bringing down your adrenaline levels, and I think that’s really, really important. When I was going through my recovery, something I became very conscious of is when my adrenaline levels were starting to raise.

I could feel the energy just building in the upper part of my body, and my body became tense. That anxiety response was very prevalent, especially as I went through the day of just dealing with stress factors. As you go through the day, it tends to make it worse. So you raise your adrenaline levels as you go through the day. That affects your cortisol, and it can really make you miserable.

Being aware of your adrenaline levels, being aware of tension is really important. When I was recovering from Lyme, I was really careful about any kind of input that was coming into my brain.

I didn’t listen to the radio. I was very careful about reading the newspaper or reading what was on the Internet. I tried to make my world small by not worrying about things in the outside world that maybe were significant, but were also things that I couldn’t really control.

You like to bring your world down to the things that you have control over, and you like to minimize that as much as you can. You’re looking to reduce factors that raise your adrenaline levels during the day.

Getting regular exercise of any kind, whether that’s just walking or doing qigong or yoga, can help diffuse that adrenaline surge that you have, that adrenaline buildup during the day. Just taking a meditation or what a lot of people call a power nap.

I used to call it touching sleep. I would take 15 to 30 minutes in the middle of the day at lunchtime and lie down, and I would try to relax myself to the point that I could just barely get to sleep, even if it was a minute or two.

If I reached that point, I know that I brought my adrenaline levels down to zero. And if you can do that once or twice during the day, that can short-circuit that adrenaline buildup and help you deal with that anxiety, that excessive overactive fight-or-flight response that’s driving this whole situation.

There are also plenty of calming herbs that can help. Ashwagandha, bacopa, passionflower — many of our calming and balancing herbs are very good for short-circuiting that sympathetic response.

So yes, Lyme disease is very, very much tied to anxiety. It does increase your propensity to become anxious, and decreases your stress resistance. The solution to that is reducing stress by using herbs to calm and normalize and balance your hormones, trying to move, trying to get exercise during the day.

Keep doing that and keep doing that and keep working at it until you become an expert at keeping those adrenaline levels down through the day.

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**Comment**

I never had anxiety, but my husband did. It would come and go like the wind – hitting him at the most unexpected times leaving him feeling completely helpless. Proper treatment completely ameliorated this symptom.

Here’s a story of patients misdiagnosed with anxiety when the culprit was Lyme:  https://madisonarealymesupportgroup.com/2018/10/03/lyme-patient-misdiagnosed-with-anxiety-depression/

 

 

 

Category:

Herbs, Lyme, Psychological Aspects, Treatment

IDSA Lyme Disease Treatment & Management ‘Business as Usual’ – Leaves Those with Persisting Symptoms to Suffer & Die

https://emedicine.medscape.com/article/330178-treatment#d1Updated July 1, 2019

 

 

  • Despite the knowledge that early treatment makes all the difference, they state prophylactic treatment should not be given for tick bites that are equivocal or low risk. 
Anyone out there know of a “low risk” tick bite?

How about this “non relevant” tick bite?”  https://madisonarealymesupportgroup.com/2018/07/24/diagnosed-with-cellulitis-child-had-lyme-docs-said-it-was-a-non-relevant-tick-bite/ (Outcome of the non relevant tick bite)

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ILADS does not give a specified treatment for persistent symptoms because every case is highly variable depending upon symptoms and other pathogen involvement, requiring finesse and extremely individualized treatment.  https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/

https://madisonarealymesupportgroup.com/2018/12/28/the-history-of-lyme-disease-dr-burrascano/ ILADS video of Dr. Burrascano on the history of Lyme as well as treatment nuances discovered over years utilizing microscopy.  Important take aways:

  • people require different dosages of drugs to get blood levels high enough to kill pathogens
  • patients should be symptom-free for 2-4 months before stopping treatment
  • if symptoms return, a cycling approach should be used
The IDSA appears to be trapped in a time-warp of their own making.

The polarization continues unabated. If you suspect you are infected, DO NOT see a mainstream doctor. 

You’ve been duly warned. Spread the word. We continue to be on our own.

 

Category:

Lyme, Treatment