Archive for the ‘Lyme’ Category

“Bitten” Makes Many “Best of 2019” Book Lists

https://www.lymedisease.org/touched-by-lyme-bitten-makes-many-best-of-2019-book-lists/

08 JAN 2020

“Bitten” Makes Many “Best of 2019” Book Lists

By Dorothy Kupcha Leland

Jenna Luche Thayer – Australian Lyme, A Global View

 Approx. 1 hour 20 min.

Jenna Luche Thayer – Australian Lyme, A Global View

Jenna clearly outlines the multi-layered complexities of the blocks causing difficulty in progressing best practise diagnosis and medical care with Lyme globally. Note: Jenna would also like to add that a Disulfiram protocol has been one of the very hopeful developments for both her and her husband. Jenna really benefited from this generic drug and her husband who was about to go on disability, is now in normal to high function including hiking and kayaking. There is hope for new treatments like this and more.
**Correction**: ‘a number of monkeys died from Ebola in the lab in my (then) home town of Reston VA; but no humans died’
____________________
**Comment**
Jenna is truly a force to be reckoned with and the Lyme community is blessed to have her expertise in government corruption.  In this video she explains the complicated saga behind why Lyme patients are not getting coverage for treatment.  In brief it has to do with codes doctors use so patients obtain insurance coverage.  Without these codes, patients will not get coverage.
I’m so thankful she and her husband are doing so well on Disulfiram.  I would like to point out another side; however, so you as patient weigh the risk vs the benefit:

 

NH House Bill 490 & Serology for Lyme Disease

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/

NH House Bill 490 and Serology for Lyme Disease

JAN 11, 2020 — 

Most of us involved in this scandal are familiar with the faulty/misleading testing algorithm for Lyme disease as it is the root cause of unimaginable pain and suffering. Delayed diagnosis and treatment leads to serious health consequences.

Feel free to share the letter below and attachments to the uneducated public who are in denial that this couldn’t possible happen to them.

——— Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: tickbornedisease@hhs.gov
Cc: (82 Undisclosed recipients)
Date: January 11, 2020 at 11:54 AM
Subject: NH House Bill 490 and Serology for Lyme Disease

To: The Tick-Borne Disease Working Group,

Please see the letter below addressed to the New Hampshire Medical Society regarding House Bill 490.

In order to cut down on email size I have provided Dropbox storage links for the attachments listed in this message.

Carl Tuttle

Lyme Endemic Hudson, NH


Letter to the New Hampshire Medical Society:

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: james.potter@nhms.org
Cc: (28 Undisclosed recipients)
Date: January 10, 2020 at 11:19 AM
Subject: NH House Bill 490 and Serology for Lyme Disease

Jan 10, 2019

New Hampshire Medical Society
7 North State Street
Concord, NH 03301-4018
ATTN: James G. Potter, CAE, Executive Vice President

Dear Mr. Potter,

I have reviewed the amended version of HB490 calling for a commission to study the role of clinical diagnosis and the limitations of serological diagnostic tests and I have to tell you that all Tuttle family members did not meet the CDC’s criteria for positive test results on the only FDA approved testing algorithm for Lyme disease (2 out of 3 IgM bands and 5 out of 10 IgGbands) and yet all of us were horribly ill.

It is not necessary to meet these strict criteria as it was originally developed for surveillance/reporting purposes only but there is no disclaimer on the test to inform the physician that a negative test result does not necessarily mean that the patient does not have Lyme disease.

The confusion over this has caused untold pain and suffering as delayed diagnosis will lead to dire health consequences. The uneducated PCP will see “Negative” on the lab report and inform the patient that he or she does not have Lyme disease.

Had we not met Dr. Sam Donta of BU School of Medicine (Currently a member of the Tick-Borne Disease Working group) who spent a career studying Lyme disease, none of us would have been treated.

This is a serious problem!

For your review, I have attached a copy of my 2009 letter addressed to Salim E. Kabawat, M.D. Medical Director of Quest Diagnostics outlining the problems with current serology. Nothing has changed.

In addition, I am attaching a copy of my wife’s Western blot showing only one single positive test band and no disclaimer.

I mean no disrespect Mr. Potter but what we have here in New Hampshire (and across the country) is a plague of ignorance and House Bill 490 is looking to address this.

Included with this correspondence is a copy of a 2009 tick study here in New Hampshire conducted by UMass Amherst and you will see in the town of Litchfield, 77% of the ticks tested are carrying tick borne disease. You or a loved one is a single tick bite away from experiencing this travesty.

Respectfully submitted,

Carl Tuttle
Lyme Endemic Hudson, NH

Attachments:

1. 2009 letter addressed to Salim E. Kabawat, M.D. Medical Director of Quest Diagnostics

https://www.dropbox.com/s/rot8mvqxd1ol9e2/June%2017%20Quest%20Diagnostics%20Letter.doc?dl=0

2. Sample Western blot

https://www.dropbox.com/s/ppus0unm0j2oiff/Western%20Blot.pdf?dl=0

3. UMass Amherst Tick Study

https://www.dropbox.com/s/kvxnp7tffoy4yas/NH%20Tick%20StudyText%20added.doc?dl=0

Cc: Tick-Borne Disease Working Group, Washington DC

___________________
**Comment**
This letter points out an important issue that demands attention: current testing misses over half of all cases, yet doctors blithely and blindly continue to tell patients they don’t have Lyme disease when they test negative:  https://madisonarealymesupportgroup.com/2018/10/12/direct-diagnostic-tests-for-lyme-the-closest-thing-to-an-apology-you-are-ever-going-to-get/
Key quote:  “These serologic tests cannot distinguish active infection, past infection, or reinfection.”
The truth is, YOU CAN BE INFECTED and still test negatively.
In fact, one of the most experienced Lyme doctors in Wisconsin told me some of the sickest patients NEVER test positive.
Lyme/MSIDS is and always has been a clinical diagnoses.  This is why Dr. Horowitz’s MSIDS questionnaire is a far better indicator of infection than current serology:  https://madisonarealymesupportgroup.files.wordpress.com/2016/01/symptomlist.pdf
If you suspect infection, print and fill this out.  It is also scientifically validated:  https://madisonarealymesupportgroup.com/2017/09/05/empirical-validation-of-the-horowitz-questionnaire-for-suspected-lyme-disease/
Understanding symptomology is a must with tick-borne illness and the quicker medical professionals wake up to this fact, the better.

Lyme Advocates Push For Funding & Accountability & Congress Agrees

https://www.lymedisease.org/fries-congress-lyme-summary/

Lyme advocates push for funding and accountability–and Congress agrees

Heavy Metal Detoxification Could Aid in Treatment of Chronic Lyme Disease

https://www.bca-clinic.de/en/heavy-metal-detoxification-could-aid-in-treatment-of-chronic-lyme-disease/

Heavy Metal Detoxification Could Aid In Treatment of Chronic Lyme Disease

Sufferers of chronic Lyme disease often have a defective immune response when taking the antibiotics needed to help cure them of the disease. This lowered immune system response can be caused by the Lyme disease itself, or by other internal problems such as heavy metal toxicity. The role of heavy metal detoxification in the treatment of chronic Lyme disease has been a point of study for many experts. Some have posited that heavy metal toxicity and Lyme disease go hand-in-hand, and that heavy metal detoxification could help in the long-term treatment of the chronic illness.

Lyme disease is a tick-borne illness that can cause the infected person to experience a wide array of symptoms such as numbness in the limbs, memory loss, dissipated cognitive function, flu-like symptoms and chronic headaches. Antibiotics are generally used to treat both short and long-term Lyme disease, but due to the attack on the body, sufferers also have weakened immune systems that can lead to antibiotics having less efficacy.

Although more research needs to be done on certain stressors and their correlation with antibiotic resistance in Lyme disease patients, promise has been shown in heavy metal detoxification therapy.

Heavy metal toxicity and Lyme disease

Heavy metal toxicity is the build-up of certain heavy metals in the body that can cause a range of problems such as chronic fatigue, depression and other mental health issues, digestive issues and altered cognitive function. It’s also worse in people who have the MTHFR (Methylene tetrahydrofolate reductase) gene mutation, as this mutation leads to problems with the body’s natural methylation process. The methylation process helps keep things functioning at an optimal level by removing certain stressors such as bacteria, pollutants and heavy metals.

When heavy metal toxicity is present in a person suffering from Lyme disease and the MTHFR gene, the treatment of Lyme disease becomes that much more difficult. To help the body process antibiotics, heavy metal detoxification could play a vital role in helping to smooth things along.

The first and simplest way is through diet. What a person eats has a lot to do with how the body functions, and when certain toxins are present in large amounts, as with the case of heavy metal toxicity, the body does not function at the optimal level. Adding foods rich in vitamins and minerals will encourage heavy metal detoxification throughout the body. Good foods to eat are organic fruits and vegetables such as wild blueberries, tomatoes and lemons; cilantro and garlic; and green tea. To avoid increasing ingestion of heavy metals, it’s good to avoid certain foods such as fish, alcohol and brown rice (because of its high levels of arsenic).

Image by Geralt on Pixabay: The human body needs to run at its most optimal for antibiotics to work properly.

Chelation therapy for Lyme patients

Another process used to help rid the body of its overload of heavy metals is chelation therapy. Chelation is a type of chemical process used by doctors for patients whose heavy metal toxicity is too severe to be tackled by diet alone. The process involves the medication ethylenediaminetetraacetic acid (EDTA). EDTA is given intravenously for direct contact with the bloodstream. 

When the drug enters the bloodstream, it finds the minerals in the body that attribute to the overall heavy metal detoxification and attaches to them. Once the EDTA has attached itself to the heavy metals it sought out throughout the body, it then begins the process of detox. The compound created by EDTA’s attachment to the minerals is then passed through the body, eventually leaving through the urination process. This is especially important for sufferers of Lyme disease because it contributes to the body’s overall absorption and use of the antibiotics needed for treatment.

Hyperthermia therapy for Lyme patients

As understanding of alternative treatments for Lyme disease is low, patients recovering from the disease are often solely reliant on the strength and efficacy of the antibiotic course they take. That is why their body needs to be running at its best for the antibiotics to work as they should. Hyperthermia is a process used to help lower antibiotic resistance, thus making the treatment more effective for Lyme patients.

Hyperthermia is the process of heating the body internally until a fever breaks. When a fever is present, white cells in the body work overtime to help combat infection. This actually helps antibiotics attack and kill the Lyme bacteria, because the cells designed to fight the disease and elicit an immune response react much faster than if the body was at its regular temperature.

How to treat chronic Lyme disease

Antibiotics are the most efficient treatment of chronic Lyme disease, but there are a variety of ways to help treat both acute and severe cases in conjunction with medication. Supplements aid in the body’s natural processes so that when a Lyme disease patient takes the antibiotics they need to fight the disease, the body is ready to fight. Things such as Vitamin B6, zinc, magnesium and 5MTHF all aid in the proper function of the body. These supplements can affect the way people with the MTHFR gene combat Lyme disease because those vitamins and minerals can duplicate the processes of a normal MTHFR gene. In sufferers of Lyme disease, this encourages the body to complete its natural methylation process with close to full efficacy.

Image by Daily Nouri on Unsplash: Supplements aid in the proper function of the body’s systems.  

Another way to help the antibiotics do their job is through the use of infrared saunas while doing an antibiotic course. The infrared sauna helps to sweat out heavy metals and other toxins trapped in the body. The heat also helps quicken the metabolic rate, which can aid in quick digestion (and passing) of certain things that aren’t necessary in optimal health. Some studies even go so far as to suggest that sweating can cause the body to get rid of more toxins than the passing of toxins through urine, but both are effective ways of ridding the body of harmful chemicals that can decrease the efficacy of antibiotics used in the treatment of Lyme disease.

*This article is based around the expertise of BCA’s new doctor, Dr. Hollenhorst, who specialises in pain management and heavy metal detoxification. If you have any questions regarding how heavy metal detoxification and chelation therapy could help patients with Lyme disease, please email us at info@bca-academy.com*

Featured image by Vegan Liftz on Unsplash 

Broad Range of Presentations For Lyme Carditis Cases

https://danielcameronmd.com/broad-range-of-presentations-for-lyme-carditis-cases/

BROAD RANGE OF PRESENTATIONS FOR LYME CARDITIS CASES

In their article “Risk factors for Lyme Carditis: A case-control study,” published in Preventive Cardiology, researchers from Stony Brook University Hospital described a wide range of Lyme carditis cases seen between 2010 – 2016.¹ Out of 247 patients admitted for Lyme disease, 18 met the inclusion criteria for Lyme carditis.

“[Lyme carditis] is caused by direct invasion of myocardial tissue by spirochetes and an immunological host response causing lymphocyte inflammation,” writes Marcos.¹

Furthermore, “B. burgdorferi has a predisposition to cause inflammation of the atrioventricular (AV) node resulting in variable conduction abnormalities.”

The 18 patients with possible Lyme carditis were predominantly Caucasian males with a mean age of 44.5 years (range was 24-79).

All of the patients met the CDC surveillance case definition for Lyme disease. One patient had an erythema migrans (EM) rash with negative blood tests.

The remaining 17 individuals had 2-3 IgM specific bands for Lyme disease. Of these, 5 presented with an EM rash and 11 had 5 or more IgG bands, explains Marcos.

“The most common symptoms at presentation were chest tightness, dizziness, and dyspnea on exertion and symptoms had been present for 4-30 days,” writes Marcos.

The 18 patients exhibited a wide range of abnormal EKG findings:

4 – AV block (2nd and 1st degree AV block)
6 – Right bundle branch conduction abnormalities
2 – New onset of atrial fibrillation
3 – T wave inversion
1 – Sinus bradycardia with ST elevation
2 – Prolonged QT interval

The authors were not able to address the outcome as the study was retrospective.

Marcos and colleagues were able to find a growing number of Lyme carditis cases in the literature. The most common presentation involved atrioventricular conduction abnormalities. Others included: right bundle branch block (RBBB), left bundle branch block (LBBB), widening of the QRS complex, AV dissociation, atrial fibrillation, ventricular dysfunction, fulminant myocarditis, and cardiac arrest.

“The spectrum of ECG abnormalities in [Lyme disease] may be broader than that previously suspected,” the authors conclude. “Clinicians should be aware of these ECG abnormalities that may be a sign of [Lyme carditis] in hyperendemic areas.”

References:
  1. Marcos LA, Castle PM, Smith K, Khoo T, Morley EJ, Bloom M, Fries BC. Risk factors for Lyme carditis: A case-control study. Eur J Prev Cardiol. 2019 Sep 19:2047487319876046.

___________________

For more:  https://madisonarealymesupportgroup.com/2019/11/29/increasing-burden-of-lyme-carditis-in-united-states-childrens-hospitals/

https://madisonarealymesupportgroup.com/2019/02/21/diagnosis-treatment-of-lyme-carditis/

https://madisonarealymesupportgroup.com/2019/11/04/suspect-lyme-carditis-start-empiric-antibiotics-case-report-suggest-and-lyme-carditis-is-not-rare/

https://madisonarealymesupportgroup.com/2018/07/09/with-unexpected-death-autopsies-should-look-for-lyme-carditis/

Excerpt:  “Lyme expert Dr. Daniel Cameron has done a nice job of summarizing five cases in a blog. http://danielcameronmd.com/autopsy-study-reviews-cases-due-to-sudden-cardiac-death-from-lyme-disease/
Cardiac Tropism of Borrelia burgdorferi: An Autopsy Study of Sudden Cardiac Death Associated with Lyme Carditis. (March 2016)
http://ajp.amjpathol.org/article/S0002-9440(16)00099-7/abstract
Excerpt:

Fatal Lyme carditis caused by the spirochete Borrelia burgdorferi rarely is identified. Here, we describe the pathologic, immunohistochemical, and molecular findings of five case patients.”

https://madisonarealymesupportgroup.com/2019/05/15/lyme-carditis-presenting-as-atrial-fibrillation/

https://madisonarealymesupportgroup.com/2018/02/22/new-lyme-cme-course-available-lyme-carditis-more-than-blocked-beats/

https://madisonarealymesupportgroup.com/2019/06/04/how-vector-borne-diseases-impact-heart-health/

 

 

Can Treating Mast Cells Help Neurological Lyme?

https://www.lymedisease.org/mast-cells-neurological-lyme/

07 JAN 2020

“With all things being equal, the simplest explanation tends to be the right one.” ― William of Ockham

For a review that explains the book a bit:  https://arogayoga.com/never-bet-occam-book-review/

In essence, Lyme/MSIDS messes up the immune system and causes wide-spread inflammation. Due to this, many suffer with sensitivities, from food to their environment.  The body over reacts to these things as if it’s being attacked, causing a wide variety of symptoms, making life miserable.

For more on MCAS:  https://madisonarealymesupportgroup.com/2018/12/29/mcas-triggers-symptoms-how-to-cope/

https://madisonarealymesupportgroup.com/2018/12/29/mcas-lyme-msids-2018-ilads-convention/

https://madisonarealymesupportgroup.com/2019/08/20/mast-cell-activation-syndrome-an-alert-to-psychiatrists/

https://madisonarealymesupportgroup.com/2019/05/08/9-proven-treatments-for-mast-cell-activation-syndrome-plus-a-surprising-new-comer/

https://madisonarealymesupportgroup.com/2018/03/13/mcas-lyme-msids/

https://madisonarealymesupportgroup.com/2018/03/26/the-agony-of-mcas/

https://madisonarealymesupportgroup.com/2017/03/23/rebecca-keith-on-mcas-parasites-lymemsids/