Musical about Lyme Disease being created by Wisconsin resident, Audra Cashman
Our next Lyme support meeting will be Friday, August 25, 2017 at 5:30-8:45pm at Pinney Library in Madison.
I would love to see and hear from all of you, plus, my daughter will be in attendance as she is writing a musical about Lyme Disease as well as composing the music, and needs your ideas. Please come and share as who knows – your story may make the stage!
See you soon!
Transfusion-transmitted babesiosis leading to severe hemolysis in two patients with sickle cell anemia
Karkoska K, Louie J, Appiah-Kubi AO, Wolfe L, Rubin L, Rajan S, Aygun B.
Pediatric Blood & Cancer, online first, 2017 Aug 2.
https://doi.org/10.1002/pbc.26734
Abstract
The intracellular parasites Babesia microti and Babesia duncani can be transmitted by blood transfusion and cause severe life-threatening hemolytic anemia in high-risk patients, including those with sickle cell disease.
The rarity of the diagnosis, as well as its similar clinical presentation to delayed hemolytic transfusion reaction, may lead to a delay in diagnosis, as well as inappropriate treatment with steroids or other immunosuppressive agents.
The morbidity caused by this disease in especially vulnerable populations justifies the need for a universal blood-screening program in endemic areas.
For more on Babesia: https://madisonarealymesupportgroup.com/2016/01/16/babesia-treatment/
https://madisonarealymesupportgroup.com/2016/11/19/seroprevalence-of-babesia-in-individuals-with-ld/
https://madisonarealymesupportgroup.com/2016/06/02/study-showing-results-testing-babesia-microti/
https://madisonarealymesupportgroup.com/2016/12/15/blood-screening-for-babesia/
Dr. Jay Davidson interviews functional medicine expert, Dr. Todd LePine. They walk through Lyme disease, parasites, the importance of mitochondria, nutrition, infrared technology, parasites, and much more!
Show Details:
1:12 – Dr. Todd LePine’s Background
5:50 – Top Testing Dr. LePine Uses for his Functional Medicine Approach
8:25 – Dr. LePine’s Preferred Lyme Disease Specific Testing
11:00 – Genetic Testing
14:40 – Mitochondria and Your Health
17:15 – Courtagen- Genetic Testing Related to Mitochondria
18:10 – Exercise and Nutrition Impacting Your Mitochondria
20:00 – PQQ Supplement for Mitochondria
20:40 – Mitochondria as Bacteria
21:30 – Evolution of Nutrition and Cycling Your Diet
25:30 – Intermittent Fasting
25:30 – Circadian Rhythm
28:55 – Lyme Disease aka “Tick-Bourne Illness”
32:45 – The Role of Antibiotics in Lyme
36:25 – Probiotics
38:30 – Parasites
40:10 – Treatments and Protocols for Lyme
42:15 – Chronic Lyme and Lack of Fevers
43:30 – Infrared Therapy
44:15 – Book Recommendation by Dr. LePine: Plague Time: The New Germ Theory of Disease
45:00 – Chronic Conditions and the Immune System
45:50 – Last Thoughts from Dr. Lepine on Lyme Disease: “The Great Mimicker”
48:30 – Visit Dr. LePine’s Website: http://www.drlepine.com or additional educational resources at: Genova Diagnostics — https://www.gdx.net/
http://danielcameronmd.com/growing-list-eye-problems-lyme-disease/
GROWING LIST OF EYE PROBLEMS IN LYME DISEASE
Ophthalmic manifestations of tick-borne diseases are increasing in the United States, according to a review published recently in Current Opinion in Ophthalmology. And, “although ocular involvement can be self-limited, delays in diagnosis may result in vision impairment and even blindness,” stated Sathiamoorthi from the Mayo Clinic. [1]
by Daniel J. Cameron, MD MPH
The authors described patients with tick-transmitted diseases presenting with the following ophthalmologic findings:
Follicular conjunctivitis
Periorbital edema and mild photophobia
Bell’s palsy, cranial nerve palsies and Horner syndrome
Argyll Robertson pupil
Keratitis
Optic neuritis, papilledema, papillitis and neuroretinitis
Myositis of extraocular muscles and dacryoadenitis
Episcleritis, anterior and posterior scleritis
Anterior, intermediate, posterior and panuveitis
Retinal vasculitis, cotton wool spots and choroiditis
Retinitis, macular edema and endophthalmitis
The authors point out that optic neuritis, which is often seen in multiple sclerosis, occurs in Lyme disease, as well. Furthermore, they remind readers that although it is rare, uveitis can also be found in Lyme disease (LD). “Findings include vitreitis, retinal vasculitis, cotton wool spots, choroiditis, macular edema and endophthalmitis,” stated Sathiamoorthi. “In several cases, spirochetes were detected in vitreous material.”
Uveitis is an inflammation of the uvea, which is made up of the iris, ciliary body and choroid. Anterior, intermediate and posterior uveitis as well as panuveitis has also been described. [2]
Uveitis can be found with a wide range of acute and chronic presentations. “Patients with anterior uveitis usually complain of pain, redness, blurred vision, and photophobia, watering,” according to Agrawal from the Medical Research Foundation, India. [3] “Most of the patients would have had repeated attacks and would have sought consultation with multiple ophthalmologists and would have used topical and/or systemic medications on and off.”
Ocular complications are infrequent but can be serious. “Complications such as macular edema, chorioretinitis and optic neuropathy may be vision-threatening and require treatment with corticosteroids as long as the recommended antimicrobial regimen has been instituted,” stated Sathiamoorthi.
The true incidence of ocular findings, however, remains unknown. According to Sathiamoorthi, one case of seronegative uveitis was discredited. “At least one of the earlier case reports of Lyme uveitis found spirochetes in vitreous material, yet serological testing was negative for Lyme antibodies.”
The authors conclude the “degree and frequency of ocular signs and symptoms varies widely between the different [tick-borne] diseases. …The opthamologist needs to be alert to the possibility of an infectious cause depending on the patient’s risk factors. The growing number of Lyme disease cases and other tick-borne diseases…should heighten clinical suspicion for tick-borne illness…”
References:
Sathiamoorthi, S. and W.M. Smith, The eye and tick-borne disease in the United States. Curr Opin Ophthalmol, 2016. 27(6): p. 530-537.
Sudharshan, S., S.K. Ganesh, and J. Biswas, Current approach in the diagnosis and management of posterior uveitis. Indian J Ophthalmol, 2010. 58(1): p. 29-43.
Agrawal, R.V., et al., Current approach in diagnosis and management of anterior uveitis. Indian J Ophthalmol, 2010. 58(1): p. 11-9.
Tick bite care, references for Urgent Care and PCPs.
ILADS Member Jane Marke, MD has the following message. To contact her directly, write to contact@ilads.org and your message will be forwarded on to her.
I’m getting lots of calls from friends and family all over the country who are having trouble getting treated for tick bites. If you have having a similar experience, you, too, might want to have something handy to send them about what to expect, and how to enlist the health providers they see in giving appropriate treatment. To that ends I’ve gathered what I think is helpful for people to bring to Urgent Care or their PCP with them if they find these providers resistant to treating them.
Thanks to MMI, Lucy Barnes and PubMed for content.
________________________________________________________________________________________
Basic email:
Dear________,
Here’s what I think is most important to know about tick bite treatment:
Tick Bite Care
What to do if you get a tick bite? There are some myths, but there’s good science busting them.
1. Tick attachment time is irrelevant. If a tick is sick enough, Lyme bugs are in their saliva, and they transmit the disease immediately. If the tick is less infected, they have to send bugs from their stomach to mouth, and that takes longer. But do you really want to count on how sick the tick is? Don’t let anybody tell you that because the tick wasn’t attached for 24-36 hours you’re ok.
2. One double-dose of doxycycline is not sufficient. The guidelines that are on the government guideline website, www.guidelines.gov advise 21 days. (That’s a federal government Institute of Medicine website and it’s high quality). No other Lyme guidelines exist. (CDC is not in charge of guidelines; the Institute of Medicine is.) The problem with the study of one single-dose of doxy is that it looked for the bull’s eye rash; it did not look to see if people got sick later. It reduced the rash incidence by 87%. That’s something; but not enough, and it tells us nothing about whether those without rash got sick later. There is no reason to not follow the government guidelines and to risk your health or that of your child because somebody only wants to give you one “double dose” of doxy. There are mice studies of this treatment, and they look abysmal.
3. If you missed the tick bite and have the bull’s eye rash you are lucky inasmuch as you have incontrovertible evidence of being infected with Lyme. You HAVE Lyme. You can still get “early Lyme” treatment, but it’s not the same as treatment for a tick bite. You can find recommendations for treatment on the http://www.guidelines.gov website. Here’s a direct link to the Lyme Guidelines: http://bit.ly/2tqnaGU. These are government endorsed guidelines, the best we have at this point in time.
4. Tick-testing is controversial. Don’t wait for the testing to get treated. Negative tick tests give you no useful information; we have no idea how reliable tick testing is vs human testing. But if a tick is positive for a co-infection, something other than Lyme, you might consider getting prophylactic treatment. That’s your call, made with your doctor, but it’s a real consideration. So if you send the tick for testing, make sure the lab tests for co-infections, as well as several species of Lyme.
Jane Marke, MD, ILADS member
New York, NY
**Comment**
If you find a doctor willing to become educated on TBI’s (tick borne illness) please give them this link: https://madisonarealymesupportgroup.com/2017/06/20/help-doctors-get-educated-on-lyme-and-tick-borne-illness/
Please read: https://madisonarealymesupportgroup.com/2017/07/12/start-treatment-if-tbis-are-suspected/
Even the CDC is stating to treat empirically (this is new as of July, 2017): https://madisonarealymesupportgroup.com/2017/07/01/good-morning-america-cdc-advises-multiple-lyme-tests-due-to-false-negative-results/ CDC spokesperson at end of video.
https://madisonarealymesupportgroup.com/2017/05/01/co-infection-of-ticks-the-rule-rather-than-the-exception/ If ticks are co-infected, patients can be too.
https://madisonarealymesupportgroup.com/2017/07/01/one-tick-bite-could-put-you-at-risk-for-at-least-6-different-diseases/ Ticks transmit a whole lot more than Lyme.
https://madisonarealymesupportgroup.com/2016/03/20/why-we-cant-get-better/
https://www.lymedisease.org/jessie-bedrinana/
by Jessie Bedrinana
My daughter was nine when symptoms started after a long summer of hiking and camping in Southern and Central California. She was previously an outdoorsy, active, happy child who loved school. Her symptoms started with fatigue, weakness and knee pain (after a brief flu-like illness) and then the pain migrated.
She complained of stomach aches, headaches, shooting/stinging pains around her body, periodic congestion and a dry cough. A few months in, she got strep and the symptoms worsened. She had a horrible reaction to amoxicillin (swollen, debilitating painful joints, red, itchy rash and hives, fatigue) that would not quit.
Her ANA levels were high with the original onset of symptoms, then soared up to 1:1280 at the height of her illness and beyond. We went to her pediatrician, two ERs and a rheumatologist, who was concerned enough to have her admitted to a children’s hospital.
At this point, neuropsychiatric symptoms had also begun. She was acting almost possessed, she had rage and emotional lability and was making different noises that she seemed unable to control.
Her eyes had red circles around them and they looked sunken into her head and she said that her head felt heavy (yet her pediatrician since birth was ready to send her right back to school).
This was the beginning of December and doctors asked questions like “did you recently go hiking?” “Was she bitten by an insect?” “Did you travel out of town?”
Looking back, these were the wrong questions, indicating a lack of knowledge and awareness of how Lyme behaves. Yet, based on that conversation, the doctors ruled out Lyme immediately. They never even tested her for it.
She stayed five nights in the hospital that time and nobody knew what was wrong. They sent us home after some of her physical symptoms improved with time and meds.
One doctor had brought up the diagnosis of PANDAS, but the team could not agree on that one so that was not pursued either. She was diagnosed with lupus and put on very strong immunosuppressants.
All of her physical and neuropsychiatric symptoms continued, plus dizziness and dermatographia (where even light scratching of the skin can cause deep red welts that last 30 minutes or longer). She also developed severe pain in her feet and legs, making it impossible to walk.
She had mood swings, low frustration tolerance, rage, separation anxiety and a fear of going to school. She was enrolled in our school district’s home study program.
By February, she was hospitalized again for seven nights, this time with a diagnosis of somatoform disorder. This is a psychological diagnosis which assumes that mental conflict is turned into physical pain. They blamed her history of physical illness and the misdiagnosis of lupus as being traumatic and causing a mental illness.
They told us to ignore her physical complaints and take her to a psychiatrist. My daughter sobbed and told me she was so worried that we would not believe her anymore because the doctors didn’t believe her.
One pediatrician tested her for Lyme disease again, but she had been on immunosuppressants for over two months and the ELISA was negative.
I asked every doctor whether or not the immunosuppressives would affect the results of that test and nobody gave me a straight answer. (Editor’s note: yes, immunosuppressives can affect the outcome of a Lyme antibody test.)
Eventually, on my own, I learned more about Lyme disease and PANS/PANDAS. I found a Lyme-literate medical doctor who is an expert in both diseases, and had my daughter tested for a great many things.
She was CDC positive for Lyme, and positive for active Babesia, Bartonella, Erlichia, and Mycoplasma. She was also positive for PANS/PANDAS on the Cunningham panel, which measures autoimmune antibodies associated with neuropsychiatric disorders. She finally started treatment for all this, more than a year after her problems had started.
After following a comprehensive treatment protocol for many months now, she is doing much better. She went back to school in January and completed the semester with all As and Bs. She is now 11 years old.
How can an adult look at a child like this and say she has a mental illness? I think I know the answer to that one – blame the parents!
Why did I, as her mother, have to research and fight to get her treatment? Why do we have to pay out of pocket for doctor visits, testing, and some treatments? Why do some of her doctors still question whether or not her diagnoses actually exist?
Her pediatrician and cardiologist have known her since birth and have known me that whole time. I only take my kids to the doctor for their regular checkups and in severe instances of illness or injury. I am a completely reasonable, rational person with a master’s degree from a reputable university, and I have practiced pediatric occupational therapy for 13 years.
I can only imagine what would’ve happened had we followed the doctors’ advice from the children’s hospital. I know there are lots of other children out there going through the same thing for even longer periods.
Do pediatricians seriously believe that all these school-aged children have mental illnesses? Our daughter was prescribed Zoloft after meeting the psychiatrist just once. I chose to keep looking. But I think that some parents have a blind faith in the medical community or they just don’t know what else to do.
Click here for a photo slideshow about Jessie’s daughter.
Jessie Bedrinana is a mother of two and a pediatric occupational therapist in California. She and her twin sister recently ran a marathon to raise money to help families pay for Lyme treatment. She also blogs about her experiences here.
**Comment**
Stories like these first break your heart then make you want to strangle some doctors. This poor girl, whom doctors had no trouble prescribing Zoloft after 1 visit, will not even consider a test for TBI’s (Tick borne infections), and heaven forbid – give her antibiotics! They would rather say it’s a mental disorder she MADE UP. I’ve said this before and I’ll say it again, you can’t make this stuff up!
Please take note of the plethora of symptoms and the tandem workings of PANDAS/PANS with TBI’s. A highly respected LLMD here in Wisconsin has found that 80% of his PANS kids also have Lyme/MSIDS (borrelia and other coinfections). Also, as heartbreaking as it is, force yourself to watch the beautiful slide show Jessie made. This visual information may help you or someone you love – just by educating yourself.
The take home: do your own research, ask questions, and don’t allow egotistical medical professionals to patronize you by telling you that you or your child are making it all up. Call them to the carpet. If they refuse to help, go elsewhere, to someone who will listen to you and believe you.
Refuse to let yourself or your child become another casualty in the Lyme Wars.
The following petition was started by Lyme advocate, Carl Tuttle. https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/20602886?j=89899&sfmc_sub=410444853&l=32_HTML&u=16167516&mid=7259882&jb=60&utm_medium=email&utm_source=89899&utm_campaign=petition_update&sfmc_tk=Ht7E61Sjt1EPcm3kmzT7WRd1OW4bD%2fNfk56Ikngp05VXecJHFWYj580czcFLdw8V
Please use the following letter by Tuttle and contact your Senator along with a brief story of how Lyme and other TBI’s affected you or a loved one. Find your Senator here: https://www.senate.gov/general/contact_information/senators_cfm.cfm
We are only going to make progress if we keep pushing.
*************************************************************************************
Senator _________________,
MOVE LYME DISEASE TO HIGHEST ALERT LEVEL
Untreated strep throat leads to rheumatic fever which can cause irreversible heart damage but rapid culture tests available in the primary care setting has virtually eliminated rheumatic fever and the life-threatening complications associated with that disease.
Misdiagnosed and untreated Lyme disease creates the same life-altering/life-threatening consequences but this has been hidden from the worldwide medical community and general population. Just ask Duke University Professor Neil Spector who required a heart transplant after his Lyme infection went four years untreated. Spector’s laboratory tests (serology) were repeatedly negative. Faulty/misleading antibody tests are the root cause of unimaginable pain and suffering.
Lyme disease is capable of producing sudden death with no warning signs; [1,2,3,] heart damage requiring transplant, [4] paralysis with seizures, [5] lymphoma [6] and persistent infection after antibiotic treatment [7, 8,9,10,11] along with congenital transmission [12] and ability to create wheelchair bound patients [13]. The last time we recognized a disease with this potential to cause serious harm, (Zika) the CDC wanted 1.8 billion for research. [14]
Quote from Senator Richard Blumenthal: “Today for me culminates more than a decade of work and probably a decade more, because I’ve seen firsthand the devastating, absolutely unacceptable damage done by Lyme disease to individual human beings, Connecticut children and residents whose lives have been changed forever as a result of Lyme disease”
Source: http://ctmirror.org/2011/07/18/blumenthal-takes-lyme-disease-fight-senate/
The truth about this devastating disease has been kept from the public for 43 years.
There are no Public Service Announcements informing the public that you could become horribly disabled or die from Lyme disease. WHY?
The one-size-fits-all IDSA treatment guideline does not scratch the surface for a Borrelia infection misdiagnosed and untreated for years or decades. This growing class of Lyme patient has been ignored by the CDC, IDSA and American Lyme Disease Foundation as the focus has been to discredit the sick and disabled along with the courageous clinicians attempting to help these patients. [15]
Lyme disease belongs in the same health threat category as AIDS and Zika and with over 300,000 cases annually Lyme is now six times the AIDS epidemic and twice as prevalent as breast cancer.
The Centers for Disease Control is 100% responsible for this runaway plague with unacceptable testing, inadequate treatment, lack of medical training and absolutely no disease control.
This is an epic forty year failure of the nation’s health protection agency responsible for the health and wellbeing of all Americans.
Lyme Disease: Call for a “Manhattan Project” to Combat the Epidemic. Raphael B. Stricker, Lorraine Johnson, Published: January 02, 2014DOI: 10.1371/journal.ppat.100379
http://www.plospathogens.org/article/info:doi/10.1371/journal.ppat.1003796
REFERENCES:
1. 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.”
2. CDC Case Study #1: Three Sudden Cardiac Deaths Associated with Lyme Carditis: http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6249a1.htm?s_cid=mm6249a1_w
3. CDC Case Study #2: A case report of a 17-year old male with fatal Lyme carditis
http://www.cardiovascularpathology.com/article/S1054-8807(15)00025-3/abstract?rss=yes
4. Professor Neil Spector: Duke physician uses near-death experience to encourage patient self-advocacy
http://www.dukechronicle.com/articles/2015/05/28/duke-physician-uses-near-death-experience-encourage-patient-self-advocacy#.VYlYnxtViko
Dr Neil Spector from Duke University required a heart transplant after his Lyme disease went undiagnosed for four years.
5. 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
Fifth-grade teacher Kelly Downing was paralyzed from the neck down and interviewed by Katie Couric.
6. Infection by Borrelia burgdorferi and cutaneous B-cell lymphoma (Cancer)
https://www.ncbi.nlm.nih.gov/pubmed/9331890
Specific DNA sequences of Borrelia burgdorferi were identified in cutaneous lesions from 9 patients (follicle center lymphoma: 3/20; immunocytoma: 3/4; marginal zone B-cell lymphoma: 2/20; diffuse large B-cell lymphoma: 1/6).
7. Application of Nanotrap technology for high sensitivity measurement of urinary outer surface protein A carboxyl-terminus domain in early stage Lyme borreliosis.
http://translational-medicine.biomedcentral.com/articles/10.1186/s12967-015-0701-z
41 of 100 patients under surveillance for persistent LB in an endemic area were positive for urinary OspA protein after antibiotic treatment.
8. Culture evidence of Lyme disease in antibiotic treated patients living in the Southeast.
http://danielcameronmd.com/culture-evidence-of-lyme-disease-in-antibiotic-treated-patients-living-in-the-southeast/
Rudenko and colleagues reported culture confirmation of chronic Lyme disease in 24 patients in North Carolina, Florida, and Georgia. All had undergone previous antibiotic treatment.
9. DNA sequencing diagnosis of off-season spirochetemia with low bacterial density in Borrelia burgdorferi and Borrelia miyamotoi infections.
https://www.ncbi.nlm.nih.gov/pubmed/24968274
Faulty/misleading antibody tests landed a sixteen year old male in a psychiatric ward when his lab results did not meet the CDC’s strict criteria for positive results. His Western blot had only four of the required five IgG bands. Subsequent DNA sequencing identified a spirochetemia in this patient’s blood so his psychiatric issues were a result of neurologic Lyme disease misdiagnosed by antiquated/misleading serology. This patient was previously treated with antibiotics.
10. Granulomatous hepatitis associated with chronic Borrelia burgdorferi infection: a case report
http://www.labome.org/research/Granulomatous-hepatitis-associated-with-chronic-Borrelia-burgdorferi-infection-a-case-report.html
The patient had active, systemic Borrelia burgdorferi infection and consequent Lyme hepatitis, despite antibiotic therapy.
11. Scotty Shelton and Persistent Infection in Saginaw MN
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/11685820 “Scotty’s brain (cerebral cortex) was positive for Borrelia burgdorferi and Borrelia myamotoi, his testicle is positive for Bb. We are now testing other tissues. Seven years of antibiotics and 3.5 years of natural treatments (along with antibiotics) and he was highly highly positive.”
12. Congenital Transmission of Lyme/TBD
https://www.dropbox.com/s/z10em0szgpm8bll/Congenital%20Transmission%20of%20Lyme%202015.doc?dl=0
13. 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/ NEW YORK (CBSNewYork) — A 12-year-old girl who has been confined to a wheelchair since being diagnosed with Lyme disease said meeting Pope Francis as he arrived in New York Thursday was “the most precious moment of my life.”
14. $1.8 billion to fight Zika: CDC moves to highest alert level
https://www.washingtonpost.com/news/post-politics/wp/2016/02/08/obama-to-ask-congress-for-1-8-billion-to-combat-zika-virus/
15. Antiscience and ethical concerns associated with advocacy of Lyme disease http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(11)70034-2/abstract
Dr Paul G Auwaerter, Johan S Bakken, MD, PhD, Prof Raymond J Dattwyler, MD, Prof J Stephen Dumler, MD, Prof John J Halperin, MD, Edward McSweegan, PhD, Prof Robert B Nadelman, MD, Susan O’Connell, MD, Prof Eugene D Shapiro, MD, Prof Sunil K Sood, MD, Prof Allen C Steere, MD, Prof Arthur Weinstein, MD, Prof Gary P Wormser, MD
These are the individuals who have colluded to deny Lyme as a life-altering/life-threatening infection by trivializing a disease capable of ruining lives.
Again, please move Lyme Disease and other tick borne illnesses to the highest alert level.
Sincerely,
Name, address, phone, and email
