Archive for the ‘Lyme’ Category

Melissa’s Battle Against Lyme & Bartonella

https://www.globallymealliance.org/blog/melissas-battle-against-lyme-and-bartonella

Melissa Mclnerney is sharing her story in order to raise awareness for Lyme disease and Bartonella.

I was bitten by a tick while hiking to Robert Frost’s house in Bennington, Vermont. I found it stuck to my rib cage when I showered later that day. I returned home to Denver, Colorado and ten days later got sick with flu-like symptoms. My primary care doctor told me that since I did not have a bull’s eye rash, I could not have Lyme. He was following the CDC guidelines for diagnosing Lyme. I was unschooled in Lyme disease and I wanted to believe his words. Big mistake.

Finally, we were able to get all three of my infections under control. One, however, keeps coming back. That one is Bartonella.

Fast forward eighteen months. I am sitting in the waiting room of an LLMD in Albany, New York. There is an LLMD in Colorado, but the next available appointment was six months out. He has my test results in front of him. A Western blot test confirmed his suspicions that I had Bartonella. I also tested positive on two bands for borrelia. He made a clinical diagnosis for babesia. For the next three years, I was sick almost all of the time or herxing. Finally, we were able to get all three of my infections under control. One, however, keeps coming back. That one is Bartonella.

I had so many symptoms with Bartonella. The top symptoms were neurological: rage, depression, anxiety, depersonalization, and debilitating cognitive decline. These were the days when my daughter drove me to the grocery store (because I forgot how to drive a stick), made sure I got what was on my list, and carried my purse and paid (I left my purse at the store more than once). I couldn’t remember words. I had a system to make sure I was taking all of my medications; I moved them from one side of the sink to the other, one with a sticky note that said “am”, the other “pm.” I had piercing headaches and neck aches. My teeth hurt. My eyes played tricks on me and itched and burned. I had chronic sore throats and zings in my hands and feet. I was exhausted all the time. My liver ached. I had pain in my feet. Many mornings I hobbled into the bathroom wondering if this was going to be my life now.

Seven years later, I am mostly in remission, and my relapses are almost always Bartonella. It’s difficult to get any kind of consensus on why Bartonella is emerging as one of the co-infections that becomes chronic in some patients. When a flare-up begins, I don’t often recognize the sore throat, neck ache and brain fog. I’m amazed each time it happens. I obsessively read the symptoms and tick them off one by one. I start to find mistakes in my writing. Housework becomes more difficult. I cry for no reason and anxiously fret over my life. Nothing is as I intended it to be. I was in Vermont for an MFA in Creative Writing, a degree I hoped to parlay into teaching, or a job in writing and editing until I was able to retire in ten or fifteen years. That didn’t happen.

thumbnail_MelissaKatieWhat happened is I have had to rethink my life. I chose to simplify things by selling my big house and buying a smaller townhome with my daughter. I live with my ninety-three-year-old dad in Tucson most of the year in a retirement community. I have reduced bills, stress, and responsibilities to the bare minimum, so I can prepare for my future, whatever that may be. I need the time and space for relapses. I look for silver linings (and I do, every single day). I can spend precious time with my dad. We lean on each other. In turn, my daughter and I are extremely close. We also take care of each other, all three of us, in a way I had never imagined before Lyme. I contribute in the ways that I can, and continue to hope. In some ways, I am healthier than ever, the demands of Lyme forcing me to get enough sleep and exercise (I walk the dog every day, and swim and lift weights when I am well enough). I have found an anti-inflammatory diet (no gluten, dairy, sugar, caffeine, or alcohol) helpful. I have a therapist who has been invaluable by helping me stay flexible as I adapt to my circumstances.

When a relapse happens, I have to let go and simply hold on until it is over. It’s not the physical discomforts that make this difficult, but the mental ones. The neurological impact of Bartonella has been, and continues to be, the worst of all of the symptoms I have experienced. Whatever terms I choose to use (a preview of dementia, an inflamed brain, madness) none of them do justice to it. I cope by reading everything I can about Lyme. I find solace in knowing that I am not alone in my suffering. GLA is one of the sites I turn to. We need funds and support to help with every facet of Lyme, including debilitating co-infections like Bartonella.

***

GLA is currently fundraising for The Bartonella Discovery Program, a research project bringing together some of the top researchers world-wide who are experts on Bartonellosis. These researchers will learn more about the bacteria and which treatments are most likely to cure all patients. None of the work GLA has accomplished would be possible without your support.

GLA Contributor

Melissa Mclnerney

GLA Contributor

*Opinions expressed by contributors are their own. Melissa McInerney earned her MFA in fiction from Bennington College in 2015 and her BA from the University of Texas Austin in 1981. She has written a series of short stories about growing up in boomtown Houston and blogs about living with Lyme disease at http://lifeandlyme.net/blog/. Her work has appeared in Logophile, Blue Lake Review, Good Works Review, Jet Fuel Review and https://www.fiftiness.com/. She tolerated the south and its unrelenting heat for years. Now she thrives in Colorado with her grown daughter, three dogs, and a cat. She hikes, swims, avoids skiing, and is learning Spanish.

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For more:

Increase Your Chance of Getting Disability Benefits for Lyme Disease

https://www.lymedisease.org/lyme-disability-insurance-claims/

10 tips for Lyme disability insurance claims

by Jennifer Hess, Esq., Partner at Riemer Hess LLC

Obtaining disability insurance benefits for Lyme disease is no easy feat. Insurance companies unreasonably scrutinize Lyme disability claims – often denying claims by dismissing symptoms as “unsupported” or “exaggerated.”

This incredibly unfair practice is designed to increase insurer profits at the expense of people disabled by Lyme disease. The only way to increase your chances of approval is with careful preparation, strategic planning and sufficient evidence supporting your disability.

Below are our top 10 tips to help you obtain disability benefits for Lyme disease.

1. Secure the support and cooperation of your doctor

Before filing your disability claim, talk to your doctor to confirm that they not only believe you are disabled, but also that they will participate in the disability claim process. The process will require your doctor’s time and efforts to complete forms and respond to inquiries from the insurance company. If your doctor isn’t willing to cooperate in support of your claim, the insurance company will automatically assume that your claim is not legitimate

2. Ask your doctor to supplement the claim forms with a letter

Standard disability claim forms contain traps designed to help the insurance companies deny claims. For example, the claim form may only prompt your doctor about physical symptoms even though you might experience other disabling symptoms, such as cognitive difficulties. Unless your doctor supplements the form with more information, the insurance company will receive an incomplete picture of your condition.

Thankfully, your doctor is not limited to the forms provided by your insurance company. You can ask your doctor to supplement the forms with a detailed letter.

The letter should explain the nature, frequency, and duration of your Lyme disease symptoms, while also explaining how these symptoms impact your ability to work. Other pertinent information, such as lab results or abnormal clinical findings, can add further valuable support.

3. Undergo a functional capacity evaluation, neuropsychological evaluation, or cardiopulmonary exercise testing

Insurance companies always want to see objective proof of your disability, where possible. Testing that your doctor recommends for treatment purposes may be helpful to your disability claim.

However, there may be other tests available to substantiate your disability claim with the goal of measuring your symptoms’ impact on your physical functions rather than as treatment. These tests include the following:

Functional Capacity Evaluation If your Lyme disease causes physical symptoms such as stiffness or muscle weakness, consider undergoing a functional capacity evaluation (also known as an “FCE”). An FCE is a series of tests, practices, and clinical observations that objectively measure your physical ability to perform work-related activities. These activities include: sitting; standing; walking; lifting/carrying; pushing/pulling; performing gross or fine manipulations (for example, typing); and many other occupational functions.

Neuropsychological Evaluation If your Lyme disease causes cognitive symptoms such as brain fog, consider undergoing a neuropsychological evaluation. This is an in-depth assessment of how well your brain functions with respect to certain skills and abilities. It involves testing your performance in the areas of: reading; language; memory; attention/concentration; processing speed; learning; reasoning; problem solving; and more.

Cardiopulmonary Exercise Test If your Lyme disease causes significant physical fatigue and exertional intolerance, consider undergoing a cardiopulmonary exercise test (also known as a “CPET”). A CPET is a highly specialized stress test that objectively measures your ability to exercise and physically exert yourself.

Each of the above-noted tests may be used as acceptable proof of a Lyme disability. However, the insurance company will want to see that the testing included measures to ensure that you consistently put forth maximum efforts (known as “validity testing”), and that you passed all such measures. If you don’t satisfy validity measures, the insurance company will dismiss the results as unreliable and invalid.

4. Explain how your Lyme symptoms impact your ability to work

You will need to complete forms and talk to the insurance company representative about how your Lyme disease impacts your ability to work. This is your opportunity to tell your story. Do so by listing each of your symptoms and describing how each impacts your ability to perform the specific duties of your occupation. Where possible, provide everyday examples and be sure to describe any work activities that exacerbate your symptoms. Don’t forget to detail the non-exertional demands of your work, such as performing analytical thinking.

If your symptoms unpredictably fluctuate in nature or severity, be sure to detail that as well. The ability to maintain a normal work schedule on a consistent, reliable, and sustained basis is a requirement of any gainful employment. If your fluctuating symptoms prevent you from meeting that requirement, the insurance company should find that you are disabled.

5. Keep a Lyme symptom diary or journal

A symptom diary or journal can help demonstrate the nature, frequency, and duration of your Lyme disease symptoms. A contemporaneous, daily log of your symptoms is ideal.

For example, if you had joint pain on Tuesday, you should put that in your diary. If you could not get out of bed on Wednesday,you also should put that in your diary. The more specific your diary entries are, the better. Specificity helps the insurer view and evaluate your symptoms in context – making it easier to prove your Lyme disease disability claim.

Consider giving your doctor a copy of your Lyme disease symptom diary to put in your file. This will better enable your doctor to evaluate the full spectrum of your symptoms, rather than just the ones that you remember to report during your visit. This also can help your doctor keep better treatment notes that accurately reflect the totality of your symptoms.

6. Don’t forget to document any co-morbid conditions contributing to your disability

If you have any medical conditions other than Lyme disease contributing to your inability to work, be sure to document them. Co-morbid diagnoses can have a major impact on your disability, whether tick-related (for example, Babesiosis) or not (for example, rheumatoid arthritis). Gather documentation from the doctors that are treating any co-morbid conditions and be sure to explain the impact of such to your disability insurer

7. Gather and neatly organize your evidence with an index

The insurance company will not gather evidence of your disability on your behalf. That responsibility is on you. The more supportive evidence that you can proactively provide, the better.

Gather all medical evidence (for example, testing results, treatment notes, and statements from your doctors), occupational evidence (for example, a job description and a statement written by you detailing how you cannot perform the demands of your work), and anything else that might support your claim.

There is no limit on what you can submit, so feel free to get creative. You can submit photographs, witness statements from co-workers or friends, or even work performance evaluations.

Neatly organize, label, and index the evidence. This will help ensure that nothing goes unseen or unreviewed.

In addition to the testing detailed above, you’ll want to get the results of any serological testing. This is laboratory blood testing that typically involves two tiers to identify Lyme antibodies: (1) the “EIA” (enzyme immunoassay) or sometimes an “IFA” (indirect immunofluorescence assay); and (2) an immunoblot test, commonly referred to as the “Western Blot” test.

The Western Blot is arguably a more reliable indicator of Lyme, but it is not necessary to make a diagnosis. Although serological testing is not necessary to diagnosis Lyme disease, positive results will be helpful for your disability claim. Even if the results are not positive, the insurer will still want to see that you have had this testing done.

8. Satisfy the deadlines set forth in your disability insurance policy

Your long term disability insurance policy contains deadlines that you must satisfy. If you do not satisfy the deadlines, you will lose your opportunity to pursue your claim.

The two most important deadlines you must meet are “notice of claim” (the date by which you must notify the insurer that you intend to file a claim) and “proof of claim” (the date by which you must submit your supportive evidence).

These deadlines can be surprisingly short. For example, the deadline to file notice of claim could be as short as 7 days after the onset of your disability.

Always check your long term disability policy and be sure to keep proof of your submissions to demonstrate timeliness.

9. Receive consistent and frequent treatment while your disability claim is pending

You must continue to receive medical treatment for Lyme while your disability claim is pending. This is because most disability insurance policies require that you are under the continuous care of an appropriately qualified medical provider to be eligible for benefits.Consistent and frequent treatment is ideal, but you should always talk to your doctor about what frequency they deem appropriate.

Eventually, your insurer will want to see those updated treatment records to evaluate how you are doing.

10. Cooperate with the insurance company’s investigation within reason

Disability insurers have a right to investigate your claim, and they generally obligate you to cooperate with this process. As part of the investigation, your disability insurer might want to interview you or talk to your doctors.

Your disability insurer also might demand that you submit to a so-called “independent” medical examination by one of their doctors. The more supportive information that you can proactively throw at the insurer to support your claim, the less likely it is that the insurer will ask for more information during the investigation process. It is always best to proactively submit as much supportive evidence as possible.

Conclusion

The success of your Lyme disability insurance claim will boil down to careful, strategic planning and sufficient evidence. Without this, your chances of securing disability insurance benefits will substantially decrease. Always seek help from a disability insurance attorney who has relevant experience with Lyme disease.

Jennifer L. Hess is an attorney partner at Riemer Hess LLC in New York City, a law firm focusing on disability insurance claims. For more educational information about proving Lyme disability insurance claims, visit their FAQ Center page, “Is Lyme Disease a Disability?

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For more:

Unilateral Knee Swelling in a Child Due to Lyme Disease

https://danielcameronmd.com/knee-swelling-child-lyme-disease/

Unilateral knee swelling in a child due to Lyme disease

swollen-knee-lyme-disease

In their case report, “Pediatric unilateral knee swelling: a case report of a complicated differential diagnosis and often overlooked cause,” Guardado et al. describe a 3-year-old girl who presented to a hospital in Pennsylvania after two weeks of limping from a swollen right knee.¹

According to the authors, “The mother initially denied history of a tick bite, yet after focused questioning, the mother stated that the child had ticks on her approximately 9 months ago.

Unfortunately, the child was not taken to her clinician because she did not develop any skin rashes which could indicate Lyme disease.

The child demonstrated right knee effusion with signs of crepitus and decreased range of motion secondary to swelling, the authors explain. “In addition, she had an unsteady gait without joint tenderness, crepitus, or overlying skin pathology.”

A Western blot test for Lyme disease was positive.

“Lyme arthritis is a diagnosis that is often missed, even in children, who are the population with the highest incidence of Lyme disease,” the authors point out.

“When this diagnosis is missed, it can result in long-term morbidity, which is generally refractory to intravenous antibiotic therapy, oftentimes requiring synovectomy.”

The child had a complete resolution of symptoms following a 2-day treatment with IV Rocephin and 21 days of oral amoxicillin.

“This case demonstrates the importance of including Lyme arthritis as part of the differential diagnosis of joint swelling regardless of the recollection of a tick bite,” the authors suggest.

Furthermore, the case raises awareness of mono- or oligoarticular arthritis as one of the signs of Lyme disease.

Related Articles:

Why Does the CDC Refuse to Recognize the Disabling Stage of Lyme?

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/30673922?

Question for Dr. Dennis M. Dixon: Why does the CDC refuse to recognize the disabling stage of Lyme

Carl Tuttle

Hudson, NH, United States

Jun 19, 2022 — 

Latest email to the Federal Tick-Borne Disease Working Group. Why not ask Dr. Dennis Dixon to answer the question: “Why does the CDC refuse to recognize the disabling stage of Lyme disease?” 

Dennis.Dixon1@nih.hhs.gov

———- Original Message ———-

From: CARL TUTTLE <runagain@comcast.net>
To: “Dennis.Dixon1@nih.hhs.gov” <Dennis.Dixon1@nih.hhs.gov>
Cc: All Members of the TBDWG
Date: 06/18/2022 9:03 AM
Subject: Question for Dr. Dennis M. Dixon: Why does the CDC refuse to recognize the disabling stage of Lyme disease?

June 18, 2022

Dennis M. Dixon, Ph.D.
Chief, Bacteriology and Mycology Branch
National Institute of Allergy and Infectious Diseases (NIAID)
National Institutes of Health (NIH)
U.S. Department of Health and Human Services

Dear Dr. Dixon,

In 2020 I was appointed to a Lyme Disease Study Commission here in New Hampshire with a focus on serology. During that 12mo study, we heard testimony from numerous Lyme patients including Ashley Lynch who testified from her wheelchair. [1]

Fifth-grade teacher and Lyme patient Kelly Downing from Nashua NH was paralyzed from the neck down and interviewed by Katie Couric. [2]

-Dr. Neil Spector from Duke University required a heart transplant after his Lyme disease went undiagnosed for many years. [3]

-Julia Bruzzese who has been confined to a wheelchair since being diagnosed with Lyme disease said meeting Pope Francis as he arrived in New York was “the most precious moment of my life.” [4]

Nicole Bell lost her husband to undiagnosed Lyme disease as reported to Today.com on June 1st. [5]

This is just a short list of the horror patients experience all across America!

Question: Why does the CDC refuse to recognize the disabling stage of Lyme disease? [6]

Since you seem to believe that the Lyme science is settled, referring to the Klempner antibiotic trials, perhaps at the next meeting you could explain to the Working Group how Lyme disease disables its victim?

A response to this inquiry is requested.

Respectfully submitted,

Carl Tuttle
Hudson, NH

PS. The NH Lyme Study Commission concluded that serology to detect Lyme disease is unreliable in all stages of disease. 
http://www.gencourt.state.nh.us/statstudcomm/committees/1515/reports/RSA%20141-C%20Lyme%20Commission%20Study.pdf

References:

1. Ashley Lynch who testified from her wheelchair
https://rumble.com/vmyzi9-nh-commission-to-study-testing-for-lyme-and-other-tick-borne-diseases-08.23.html

2. Nashua Mom in the ‘Lyme Light’ on Katie Couric Show
http://patch.com/new-hampshire/nashua/nashua-mom-talks-chronic-lyme-on-katie-couric-show

3. Professor Neil Spector: Duke physician uses near-death experience to encourage patient self-advocacy
https://www.dukechronicle.com/article/2015/05/duke-physician-uses-near-death-experience-encourage-patient-self-advocacy

4. Wheelchair-Bound Girl Calls Blessing By Pope Francis ‘Most Precious Moment Of My Life’ 
http://newyork.cbslocal.com/2015/09/24/pope-francis-blesses-girl-in-wheelchair/

5. It started with a tick bite. How I lost my husband to undiagnosed Lyme disease
https://www.yahoo.com/now/started-tick-bite-lost-husband-140124817.html

6. 10 tips for Lyme disability insurance claims
https://www.lymedisease.org/lyme-disability-insurance-claims

__________________

For more on the corrupt CDC:

Efficacy of Short-Term High Dose Pulsed Dapsone Combination Therapy in the Treatment of Chronic Lyme Disease/Post-Treatment Lyme Disease Syndrome (PTLDS) & Associated Coinfections: A Report of 3 Cases & Literature Review

https://www.preprints.org/manuscript/202204.0296/v1?bbeml

Efficacy of Short-Term High Dose Pulsed Dapsone Combination Therapy in the Treatment of Chronic Lyme Disease/Post-Treatment Lyme Disease Syndrome (PTLDS) and Associated Co-infections: A Report of Three Cases and Literature Review

Abstract

Lyme disease and associated co-infections are increasing worldwide and approximately 20% of individuals develop chronic Lyme disease (CLD)/Post-Treatment Lyme Disease Syndrome (PTLDS) despite early antibiotics.
A 7–8-week protocol of double dose dapsone combination therapy (DDDCT) for CLD/PTLDS results in symptom remission in approximately 50% of patients for one year or longer, with published culture studies indicating higher doses of dapsone demonstrate efficacy against resistant biofilm forms of Borrelia burgdorferi. The purpose of this study was therefore to evaluate higher doses of dapsone in the treatment of resistant CLD/PTLDS and associated co-infections. Twenty-five patients with a history of Lyme and associated co-infections, most of whom had ongoing symptoms despite several courses of DDDCT, took one or more courses of high dose pulsed dapsone combination therapy (200 mg dapsone X 3-4 days and/or 200 mg BID x 4 days), depending on persistent symptoms.
The majority of patients noticed sustained improvement in 8 major Lyme symptoms, including:
  • fatigue
  • pain
  • headaches
  • neuropathy
  • insomnia
  • cognition
  • sweating

where dapsone dosage, not just treatment length, positively affected outcomes. High dose pulsed dapsone combination therapy may represent a novel therapeutic approach for the treatment of resistant CLD/PTLDS, and should be confirmed in randomized, controlled clinical trials.

___________________

For more:

Please remember that the often touted 20% of individuals who go on to suffer symptoms despite early treatment only include those who are diagnosed and treated early and omit a much larger subset of patients like myself, my husband, and nearly every patient I work with who are diagnosed and treated later.  For more on this, please see:  https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/

Important excerpt:

10-20% of Lyme disease patients who are promptly diagnosed and treated with an antibiotic within the first few weeks of infection, still end up with chronic disease. This is PTLDS.

30-40% of Lyme disease patients who have been infected for weeks to months before getting diagnosed, and THEN treated with an antibiotic, still end up with a chronic disease. This subgroup has no specific label but it has been referred to as “chronic Lyme disease,” or CLD.

60% of Lyme patients end up with chronic symptoms

And this, of course, doesn’t even take coinfections into consideration.