Archive for the ‘Treatment’ Category

Lee’s Rebuttal to CDC Article in MMWR

Sin Hang Lee also commented about the CDC article in the MMWR which gives 5 anecdotal cases of Chronic Lyme patients who didn’t benefit from IV treatment.
Serious Bacterial Infections Acquired During Treatment of Patients Given a Diagnosis of Chronic Lyme Disease – United States.

Marzec NS.MMWR Morb Mortal Wkly Rep. 2017

 

Sin Hang Lee, director of Milford Molecular Diagnostics Laboratory stated this:

Marzec and colleagues presented five “chronic Lyme disease” patients who did not benefit from additional antibiotic treatment when the diagnoses of “chronic Lyme disease” were made on the basis of clinical symptoms and signs (www.cdc.gov/lyme/diagnosistesting/) or by unvalidated tests. The authors have not presented evidence to show that chronic Lyme disease patients with borrelial spirochetemia proven by culture or by gene sequencing do not benefit from additional antibiotic treatment. In medicine, certain chronic infections, such as subacute bacterial endocarditis, may require intravenous or prolonged antibiotic treatment [1] in spite of its potential side effects.

The CDC should give the practitioners a case definition of Lyme disease, as for Ebola and Zika.

Conflicts of Interest: Sin Hang Lee, MD is the director of Milford Molecular Diagnostics Laboratory specialized in developing DNA sequencing-based diagnostic tests.

References 1. Hoen B. Epidemiology and antibiotic treatment of infective endocarditis: an update. Heart 2006 ;92 :1694-700. Review.

Category:

Activism, Lyme, research, Treatment

Stricker, Johnson Rebuttal to Article in MMWR

https://www.ncbi.nlm.nih.gov/pubmed/28617768

Lorraine Johnson, Raphael B. Stricker, MD.

Lymedisease.org, PO Box 1352, Chico, CA 95927; ILADS, PO Box 341461, Bethesda, MD 20827

The article by Marzec et al. published in MMWR purports to show the dangers of treatment in patients diagnosed with chronic Lyme disease  https://www.cdc.gov/mmwr/volumes/66/wr/mm6623a3.htm?s_cid=mm6623a3_e  (1). Recent reports from the Centers for Disease Control and Prevention (CDC) indicate that more than 300,000 new cases of Lyme disease are diagnosed each year in the USA (2). The MMWR article from the CDC describes five anecdotal cases of treatment complications in these patients while ignoring the significant morbidity related to denial of treatment for chronic Lyme disease (2,3). The resultant biased report raises scientific and ethical issues about the CDC’s role in promoting the best care for patients with tickborne diseases.

The MMWR piece resulted from anecdotal reports gathered by Dr. Christina Nelson of the CDC. The article notes that the information was gathered because “clinicians and state health departments periodically contact CDC concerning patients who have acquired serious bacterial infections during treatments for chronic Lyme disease.” However, an ethics complaint filed against Dr. Nelson by the Lyme disease patient advocacy group LymeDisease.org suggests that these adverse event reports were in fact specifically solicited by Dr. Nelson via emails distributed in 2014 (4). Dr. Nelson asked clinicians from the Infectious Diseases Society of America (IDSA) to provide anecdotal evidence of harm to patients from intravenous antibiotic therapy related to Lyme disease, and she apparently offered coauthorship of her article as an incentive to describe these adverse events. She did not ask for consequences of failing to treat these patients, nor did she solicit commentary from practitioners who treat chronic Lyme disease according to the guidelines of the International Lyme and Associated Diseases Society (ILADS).

The risk of any medical treatment is extremely context-sensitive. A crucial question is whether the risks of treatment are warranted given the potential benefits, the availability of other treatment options, the severity of the patient’s presentation, and the risk tolerance of the individual patient. By asking for an assessment of treatment risks only, Dr. Nelson is framing the issue in a manner that excludes the other half of the equation in a risk/benefit assessment. She is also ignoring an issue that is critical to patients who suffer a profoundly diminished quality of life due to their illness, namely the risk of not treating (5,6). Moreover, by failing to mention that these adverse event reports were rare and specifically solicited, she implies that these rare occurrences are a common concern. In reality, studies of the risks and benefits associated with intravenous antibiotic treatment for Lyme disease indicate that the risks of adverse events are no greater than the risks of intravenous therapy in other unrelated diseases (7,8).

By asking the question only of those on one side of the controversy, Dr. Nelson is further demonstrating favoritism and a lack of impartiality on the part of the CDC. Accordingly, Dr. Nelson’s solicitation of anecdotal adverse events for case studies of Lyme disease is a highly inappropriate partisan act of favoritism toward the IDSA viewpoint at the expense of critical stakeholders – Lyme disease patients and their treating physicians – and an attack on the ILADS viewpoints.

References

1. Marzec NS, Nelson C, Waldron PR, et al. Serious bacterial infections acquired during treatment of patients given a diagnosis of chronic Lyme disease – United States. MMWR Morb Mortal Wkly Rep. 2017 Jun 16;66(23):607-609.

2. Stricker RB, Johnson L. Lyme disease: Call for a ‘‘Manhattan Project’’ to combat the epidemic. PLoS Pathog. 2014;10(1): e1003796.

3. Stricker RB, Fesler MC. Chronic Lyme disease: A working case definition. Chronic Dis Int. 2017; 4(1): 1025.

4. Leland DK. TOUCHED BY LYME: CDC ignores ethics, attacks “chronic Lyme”. Available at https://www.lymedisease.org/touchedbylyme-cdc-ignores-ethics/. Accessed June 16, 2017.

5. Johnson L, Aylward A, Stricker RB. Healthcare access and burden of care for patients with Lyme disease: a large United States survey. Health Policy. 2011;102: 64–71.

6. Johnson L, Wilcox S, Mankoff J, Stricker RB. Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey. Peer J. 2014;2:e322.

7. Stricker RB, Green CL, Savely VR, Chamallas SN, Johnson L. Safety of intravenous antibiotic therapy in patients referred for treatment of neurologic Lyme disease. Minerva Med. 2010;101:1–7.

8. Stricker RB, Delong AK, Green CL, et al. Benefit of intravenous antibiotic therapy in patients referred for treatment of neurologic Lyme disease. Int J Gen Med. 2011; 4: 639–646.

 

Category:

Activism, Treatment

Who Controls the Fake Lyme Disease News?

Due to a recent report in Morbidity and Mortality Weekly Report (MMWR) Lyme patients will have a more difficult time getting IV therapy, which the CDC has dubbed “unproven.”  The report cites 5 examples…..  https://www.cdc.gov/mmwr/volumes/66/wr/mm6623a3.htm?s_cid=mm6623a3_e ,

The Washington Post also just printed this:  https://www.washingtonpost.com/news/to-your-health/wp/2017/06/15/dangerous-unproven-treatments-for-chronic-lyme-disease-cause-are-on-the-rise/?utm_term=.de7c108522d6#comments

Let’s just say, it ain’t pretty.

The CDC came out with this video of a guy who started going blind and had a tumor.  We were never told if he went on the IV antibiotics after a Lyme diagnosis, but he mentioned being told he needed it.  The verbiage under the Youtube video claims he did long-term antibiotics. It also pushes the “FDA-cleared, fully validated tests,” that we all know are abysmal and miss over half of all cases.  Same crap different day.

http://

https://madisonarealymesupportgroup.com/2017/04/12/comparing-lyme-testing-with-hiv-testing/

https://madisonarealymesupportgroup.com/2016/12/07/igenex-presentation/

IGeneX and other small labs that specialize in virology and bacteriology are vilified by the CDC/IDSA and most main stream doctors.  It is a CLIA certified lab, unlike the main labs that give the standard two-tier Lyme Test that is abysmal.  Don’t fool yourself.  This is about money and power.

If you find a doctor willing to be trained properly, please give them this link:  https://madisonarealymesupportgroup.com/2017/06/20/help-doctors-get-educated-on-lyme-and-tick-borne-illness/

*******

Pat Smith, President of Lyme Disease Association, has written this rebuttal:

Who Controls Fake Lyme Disease News?

14 June 2017

From the Desk of Pat Smith, LDA
The time has come when the public is entitled to know who in government or elsewhere is controlling the treatment of Lyme disease. 43 years into the disease, patients who can range from just infected to seriously debilitated with long-standing disease, are all thrown the same tired old bone, 3 weeks of doxycycline.

Scientists who are able to publish the science behind longer-term treatment have their science ignored.  The public is not told about persister cells being discovered which appear to be able to survive initial antibiotic treatment; they are not told about biofilm formation; they do not know about the Lyme bacteria hiding in different types of tissues. They are not told about the animal studies which show survival of the spirochete after treatment.

Government-funded NIH research has featured the same old studies with nothing new to offer sick patients, apparently due to the “experts” refusing to sit on peer review on studies with patients with long-tern symptoms–they do not believe in chronic Lyme.  New technology is ignored.

Advocates are blamed for incorrect information being posted on the net, for spreading junk science, for misunderstanding the science, for vaccine failure, for misleading patients, for promoting chronic Lyme, etc. etc.

Patients are categorized as hysterical, needing psychiatric care, having symptoms after treatment no different than those of the normal population– bottom line, not physically sick. These Lyme denialists offer them a pat on the head and show them the door, all the while chanting the “no chronic Lyme” mantra, clueless as ever as to what might be wrong with these patients or how to cure them.

Treating physicians are excoriated for caring about patients, spending hours of time with them to make a clinical diagnosis of Lyme disease and oftentimes, co-infections. They are forced to test with antiquated technology using restrictive band definitions, tests which should have been scrapped years ago, band restrictions that never should have been imposed. Meanwhile, they look over their shoulder to check out whether the “Lyme police” are coming after them and their medical licenses, in part due to the Draconian Infectious Diseases Society (IDSA) guidelines imposed upon them and their suffering patients: 3 weeks of doxy, nothing else, perhaps a psychiatrist, or what often happens to these patients, a “goodbye, live with it.”

CDC has only endorsed and posted the IDSA guidelines on their website, despite the fact those guidelines are stale and have long ago been removed from the National Guidelines Clearing House, set up under the auspices of the US Department of Health & Human Services.  The Lyme Guidelines from the International Lyme & Associate Diseases Society, ILADS, doctors who truly have an understanding of the disease and work in the trenches to provide real medical help versus false erudition, are posted on the National Guidelines Clearing House, which indicates they meet the Institute of Medicine Standards for Guidelines.

Why does CDC refuse to put up ILADS Guidelines? They feel IDSA guidelines are the best guidelines, nothing concrete to support that assertion, since the ILADS guidelines are supported by IOM standards.  Shouldn’t physicians be able to evaluate guidelines supported by IOM standards and accepted by the Guidelines Clearinghouse in relationship to stale guidelines not posted by HHS on its own National Guidelines Clearinghouse?

Too many people are getting sick, too many people are developing chronic disease, so now CDC has published in MMWR, an article titled “Serious Bacterial Infections Acquired During Treatment of Patients Given a Diagnosis of Chronic Lyme Disease — United States”Natalie S. Marzec, MD; Christina Nelson, MD; Paul Ravi Waldron, MD; et al.
Sharing horror stories a few patients experienced with IV treatments for Lyme, the CDC has shut down all long term treatments with antibiotics and with immunoglobulin. The CDC informed the Lyme Disease Association this morning that CDC felt this article was for the good of the patients, who don’t understand the dangers of IV treatments.

For the good of the patients, we need to know who ultimately controls Lyme. Why are “they” refusing to allow cutting edge testing, refusing to provide resources to improve poorly performing tests equivalent to underperforming tests with a Federal imprimatur, or refusing to allow broader band inclusion in existent testing?

Why won’t they permit long-term antibiotic treatment for humans when 70+ % of antibiotics in the US are used to fatten animals and are known to be causing antibiotic resistance; why stress the dangers of IV treatment for Lyme when other diseases such as cancer and HIV use IV and have not been singled out to warn patients of dangers; why do they refuse sick patients treatment that is based on physician judgement grounded in their assessment of the best science?

Why don’t they encourage further clinical trials to supplement flawed, underpowered trials; why do they acquiesce to dangerous policy pronouncements to assume–totally indifferent to patient health costs/benefits–that tests are false positive? Why don’t they fund research looking at chronic symptoms yet they do ignore the good science supporting post-treatment persistent infection.

43 years into the disease, with almost 400,000 cases in 2015 using CDC’s own 90% not reported calculations, we have no accurate test, no cure, and more questions than answers. To shape good public health policy for the good of patients, in place of fake news, let’s have real answers really soon.

Click here: Pat Smith in NJ.com article on CDC limiting Lyme treatment

 

 

 

 

 

Category:

Activism, Lyme, Testing, Treatment

LDN Reduced Pro-Inflammatory Cytokines in FM After Eight Weeks

https://www.ncbi.nlm.nih.gov/m/pubmed/28536359/

Reduced Pro-Inflammatory Cytokines after Eight Weeks of Low-Dose Naltrexone for Fibromyalgia.

Parkitny L, et al. Biomedicines. 2017.

Authors

Parkitny L1, Younger J2.

Biomedicines. 2017 Apr 18;5(2). pii: E16. doi: 10.3390/biomedicines5020016.

Abstract

Fibromyalgia (FM) is a complex, multi-symptom condition that predominantly affects women. The majority of those affected are unlikely to gain significant symptomatic control from the few treatments that are approved for FM. In this 10-week, single-blind, crossover trial we tested the immune effects of eight weeks of oral administration of low-dose naltrexone (LDN). We enrolled eight women with an average age of 46 years, symptom severity of 62 out of 100, and symptom duration of 14 years. We found that LDN was associated with reduced plasma concentrations of interleukin (IL)-1β, IL-1Ra, IL-2, IL-4, IL-5, IL-6, IL-10, IL-12p40, IL-12p70, IL-15, IL-17A, IL-27, interferon (IFN)-α, transforming growth factor (TGF)-α, TGF-β, tumor necrosis factor (TNF)-α, and granulocyte-colony stimulating factor (G-CSF). We also found a 15% reduction of FM-associated pain and an 18% reduction in overall symptoms. The findings of this pilot trial suggest that LDN treatment in fibromyalgia is associated with a reduction of several key pro-inflammatory cytokines and symptoms. The potential role of LDN as an atypical anti-inflammatory medication should be explored further.

**This is important for everyone, but particularly Lyme/MSIDS patients who are either misdiagnosed with FM or have symptoms of it due to a pathogen infection.  Either way, it reduces cytokines and every chronically infected person could benefit from that.
I’m a big proponent and believer in LDN. It was certainly a game-changer for me.  For more information:  https://madisonarealymesupportgroup.com/2016/12/18/ldn/

 

Category:

Lyme, research, Treatment

Membrane Lipid Replacement for Lyme/MSIDS

http://www.sciencedirect.com/science/article/pii/S0005273617301293

Available online 18 April 2017  Garth L. Nicolsona, , , E-mail author,Michael E. Ash

Abstract

Membrane Lipid Replacement is the use of functional, oral supplements containing mixtures of cell membrane glycerolphospholipids, plus fructooligosaccharides (for protection against oxidative, bile acid and enzymatic damage) and antioxidants, in order to safely replace damaged, oxidized, membrane phospholipids and restore membrane, organelle, cellular and organ function. Defects in cellular and intracellular membranes are characteristic of all chronic medical conditions, including cancer, and normal processes, such as aging. Once the replacement glycerolphospholipids have been ingested, dispersed, complexed and transported, while being protected by fructooligosaccharides and several natural mechanisms, they can be inserted into cell membranes, lipoproteins, lipid globules, lipid droplets, liposomes and other carriers. They are conveyed by the lymphatics and blood circulation to cellular sites where they are endocytosed or incorporated into or transported by cell membranes. Inside cells the glycerolphospholipids can be transferred to various intracellular membranes by lipid globules, liposomes, membrane-membrane contact or by lipid carrier transfer. Eventually they arrive at their membrane destinations due to ‘bulk flow’ principles, and there they can stimulate the natural removal and replacement of damaged membrane lipids while undergoing further enzymatic alterations. Clinical trials have shown the benefits of Membrane Lipid Replacement in restoring mitochondrial function and reducing fatigue in aged subjects and chronically ill patients. Recently Membrane Lipid Replacement has been used to reduce pain and other symptoms as well as removing hydrophobic chemical contaminants, suggesting that there are additional new uses for this safe, natural medicine supplement. This article is part of a Special Issue entitled: Membrane Lipid Therapy: Drugs Targeting Biomembranes edited by Pablo Escríba-Ruíz.

The article also noted that while glycerolphospholipid absorption in the upper intestines was over 90%, after a large meal, and transported into the blood within 6 hours, dietary MLR polyunsaturated phospholipids are oxidized and degraded during storage, ingestion, digestion, and absorption and need to be protected from acid degradation in the gut and bile salts and hydrolysis from the pancreas and gut microflora in the small intestines.  The researchers found an answer to this problem by complexing MLR phospholipids with specific fructooligosaccharides (Inulins), which protect from oxidation and high temps, acidity, and phospholipases and bile salts.

Plants such as legumes or cabbage are good sources for MLR supplementation but in order to get a daily dose of 1.8 g of membrane phospholipids you’d have to have an intake of 15 kg of beans!

The most convenient, efficient, safe and cost effective method of membrane phospholipid administration in humans has been the use of daily oral lecithin supplements [1]; [2]; [3] ;  [6]. Most oral lecithin supplements are rather crude soy, egg yolk or marine preparations that lack oxidation, bile and phosphatase protection. In addition, most of these oral supplements have not been carefully analyzed for phospholipid composition, and in particular for lipid degradation products. However, there are oral MLR phospholipid supplements, such as NTFactor® and NTFactor Lipids®, that fulfill the requirements for efficacy, oxidation and degradation protection, safety and convenience [1]; [2] ;  [3]. The NTFactor® lipid supplements, and their use in clinical studies, will be discussed in more detail in 8, 9, 10 ;  11. NTFactor®, which also contains probiotic bacteria, growth media and other ingredients, and NTFactor Lipids®, without these additives, come in several oral forms, but almost all contain from 1–2 g of phospholipids per dose [1]; [2] ;  [3]. The recommended optimal daily oral dose of NTFactor Lipids® for most clinical conditions has been estimated at 2–4 g per day, and more recently at least 4 g per day, whereas its anti-aging use has been proposed at 2 g per day [2]. Some updates in these recommendations will be discussed in Section 12.

A table in the article shows uses for MLR supplements such as fatigue, infections, autoimmune, and chemical detox and revised dose levels.  These are issues nearly every Lyme/MSIDS patient has.  The dosages for these issues are upwards of 4g/day, showing the intensive mitochrondrial damage these issues cause in the body.

Due to intense detoxification efforts by the liver, many Lyme/MSIDS patients have high liver titers.  The good news is that patients with advanced liver cirrhosis were given oral MLR phospholipids and after just 3 months had normal blood results for liver function.  They are also safe to use during pregnancy and have in fact been used in high risk pregnancies with success.

**The authors are part-time consultants to Nutritional Therapeutics, Inc. and Allergy Research Group, Inc.

 

 

Category:

diet and nutrition, Lyme, Mycoplasma, research, Treatment