https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/25034986?

School nurse documents nineteen case studies; misdiagnosis is rampant!

SEP 5, 2019 — 

My Son Got Lyme Disease. He’s Totally Fine.
Horror stories about lingering Lyme disease proliferate, but the illness is easily treated.
https://www.nytimes.com/2019/06/27/well/live/lyme-disease-children-treatment-diagnosis.html

 

Sept 5, 2019

Yale School of Public Health
60 College St.  Suite 212
New Haven, CT 06510-3201
Attn: Sten H. Vermund, MD, PhD, Dean and Anna M.R. Lauder Professor of Public Health; Professor of Pediatrics, Yale School of Medicine

Dear Dr. Vermund,

I would like to call attention to the above listed New York Times article where Dr. Eugene Shapiro exploits a case of early Lyme disease that responded to antibiotic treatment giving the reader the impression that Lyme is a simple nuisance disease and patients who are severely disabled are somehow delusional.

Focusing on the acute stage of disease after early treatment has misguided an entire medical community as these results are then assumed to apply to the entire patient population (as depicted in the attached caricature).  https://www.dropbox.com/s/dljlsmjbvk2trur/lyme%20toon.JPG?dl=0

The fact of the matter is Lyme disease can become a life altering infection if not treated immediately.

I am including below nineteen case studies forwarded to me by a school nurse from a Lyme endemic region here in the United States. As you read these accounts it becomes crystal clear that patient experience is nothing like the case Dr. Shapiro presents and it is far more common to be misdiagnosed by a medical community misguided by Dr. Shapiro and his co-defendants named in the Texas lawsuit; Lisa Torrey vs IDSA.

Might I remind you Dr. Vermund that Shapiro represents your institution so how he presents his viewpoint/bias is under your watch. Will you continue to turn a blind eye to this behavior?

Case studies forwarded to me by a school nurse who took the time to document this travesty:

Case #1 Male age 7

Second grader develops a sudden onset of severe ear pain with an audible clicking sound which can be heard by placing your ear up to the child’s ear. Child went on to develop a chronic cough, anxiety and weakness in his legs. After multiple doctor visits, the child was eventually diagnosed with Palatal Myoclonus, Asthma and Anxiety.  His pain in his ears and the clicking in his ears became unbearable, by the time he reached 5th grade he was place on homebound instruction for several years. He went through multiple ear surgeries with no relief.

Supporting evidence

This child tested Positive for Lyme and Babesia  through Igenix.  Looking back in his medical records, child had a tick embedded in his head for approximately two days at the age of five.  He was seen by the pediatrician with no further treatment deemed necessary. He was seen a few weeks later by the same pediatrician for a rash but it was dismissed. He then developed a chronic cough; (Babesia) Mom even suspected Lyme and requested a Lyme test. Mom thought it was ruled out, looking back at his medical records, the physician ordered the Elisa which was negative. This child was robbed of his childhood.

Follow-up

Child is now 14 and pain free after successful treatment for Lyme and Babesia by a LLMD. Mother has since written three books about her son’s journey and how she discovered her entire family is also infected with tick borne infections.  Sadly, this child suffered horribly for most of his childhood before being properly diagnosed and treated. No child should have endured this unnecessary suffering. Book title “Connecting the Dots” by Sherri Jonas shares this child’s tragic journey.

Case #2 Male age 6

First grader, four days after a tick bite in the month of May, complained of leg pain and fatigue. He became emotional and lost interest in playing with his friends. Chose to pass on hockey or soccer which was unlike him. He cried a lot and was clingy. The complaints of muscle pain continued. Then he fell asleep on the bus twice coming home from school. The school nurse called to say he was suddenly distant and withdrawn with low energy and even fell asleep in class.  His spring sports had ended so there was no reason for his sudden onset of fatigue. School nurse called again due to his inability to engage in class and his sudden sullen mood. He began failing unexplainably and had unexplained falls.

Supporting evidence

Tick Bite with symptoms: Clinically symptomatic for Lyme. Mother who is a teacher had recently attended Pat Smith’s Lyme presentation.  She immediately recognized what was happening and made an appt with her pediatrician. Mom provided a list of symptoms since the tick bite and a letter from the school. The pediatrician checked him thoroughly. Parent requested antibiotics based on clinical symptoms. Pediatrician refused and proceeded to order the basic Elisa and other blood work for mono etc. The mother tried to educate the pediatrician on the inaccuracies of testing as well as testing too soon (It had only been a week since the bite). She was ignored. Two days later, the office called to say all tests were negative and offered no follow-up.  Parent contacted a LLMD and was seen the next day. Child was immediately started on a course of antibiotics due to clinical symptoms occurring within days of removing an engorged tick.

Follow-up

Child was successfully treated by a Lyme Literate physician. After 8 weeks of antibiotics, the child’s health returned to baseline.

Case #3 Female age 8

Third grader develops sudden onset of migrating joint pain and bluish discoloration of her hands. School nurse contacts the family and educates on the possibility of Lyme disease. Child was seen by their pediatrician. A note came to school the next day stating the child is not contagious and should not be sent home with her cold, swollen blue hands, only needed to have hands warmed. No blood work was ordered. The school nurse calls the pediatrician expressing concern; pediatrician contacts the family and refers the child to a rheumatologist.  Weeks later, the child sees the Rheumatologist who ordered the Elisa which of course was negative.

Supporting evidence

Clinically symptomatic for Lyme disease/Poor clinical evaluation. Lives in a Lyme endemic area, was seen several times at urgent care and at the pediatricians for ankle pain, leg pain, wrist pain, back pain and headaches over the past year. Palliative care was offered each time.  Low vitamin d levels, past hx of epstein barr. Rheumatologist actually wrote a note for school stating that this child did not have Lyme (based on an Elisa) but has “Raynaud-like  phenomena”. Rheumatologist continued to say, the migrating joint pain was related to the child’s flat feet and ordered Physical Therapy.

Follow-up

This young girl has been set up for possible chronic Lyme disease. Referred for physical therapy for flat feet causing her joint pains.  And the family was told to follow-up in the winter or if develops ulcers on the fingers.

Case #4 Male age 5

Colleague’s five year old son was suffering with chronic knee pain and developed a limp for over a year. He was seen by several physicians and was diagnosed with “growing pains”

Supporting evidence

Seen by a LLMD, tested positive for Lyme and Bartonella                          Lives in a Lyme endemic area, plays soccer, developed chronic knee joint pain with swelling and fatigue.  Walked with a limp at times.

Follow-up

Child was seen and treated successfully by a LLMD and his health returned to baseline.

Case #5 Male age 5

In obtaining a medical history from his mom, I nearly cried as I knew immediately this little guy was a victim. At the age of 2, child developed: a sudden onset of high intermittent fevers, (parents told they were benign fevers) ; racing heart;  severe night sweats; severe cyclic headaches; sensitivity to lights; recurrent vomiting, constipation, feet pain, muscle weakness, sudden loss of speech at age 2,  difficulty concentrating, irritability, aggression, insomnia, allergies, swollen lymph nodes, cries easily.  He had two abnormal Mri of his brain and spine (both showed t2 flairs in the white matter) yet this poor child was diagnosed  with bipolar, OCD and AUTISM!. Tick-borne infections were never even suspected even with given the above symptoms that do not correlate with typical autism.  His treatment consisted of monitoring abnormal lab values and supportive care for autism.

Supporting evidence

Lives in a endemic area, history of spider and tick bites. Seen by a LLMD. Tested positive for Lyme disease, Bartonella Henselae, Bartonella Quintana and Babesia and AUTOIMMUNE ENCEPHALITIS. Mother was clinically symptomatic for Lyme and bartonella throughout pregnancy, recently tested positive for Lyme and bartonella. He has had several abnormal MRI of the brain/spine with evidence of t2 flair in the white matter which can be caused by infection yet it was never considered. His MRI’s are now normal post antibiotic therapy. He had several abnormal blood values including low vitamin d, low thyroid, low iron.

Follow-up

Child was seen by a llmd and began treatment. It was very hard to watch this little guy respond to the antibiotics, immediately herxed, severe fatigue, vomited, multiple bartonella rashes, child was crawling out of his skin. Medications had to be titrated very slowly. Within a month, this nonverbal child said the word “mama”. It’s on video.  After 6 months, the child began communicating using a computerized talker, he told us when he had headaches.  He became potty trained. His fatigue and vomiting resolved. His fevers resolved. His night sweats disappeared. His MRI’s were now normal after antibiotics.  (This is no coincidence). A mainstream Neurologist recognized that this child most likely had post infectious autoimmune encephalitis and she was able to get IVIG covered by Insurance.  At this point the child was making amazing gains, the IVIG literally turned this family’s life around only for Insurance to deny further infusions and cause a setback in his progression.  Was this child ever Autistic or was this medically induced Autism?

Case #6 Female age 6

Child was in first grade, I was the school nurse. She developed sudden severe foot pain, severe stomach aches, severe headaches, eye sensitivity. Sinus congestion, frequent sore throats. Suffered for years. Parents were told, it had to be stress related and questioned the family for possible contributing factors. This was one of the most loving, supportive families I knew. Met with mom 10 years later to find out her baby girl now had insulin dependent diabetes and debilitating headaches.

Supporting evidence

Seen by LLMD. Tested positive for Lyme disease. Lives in a lyme endemic area. Sudden onset of symptoms with no underlying cause. Seen by multiple doctors throughout her childhood and Lyme disease was never suspected.

Follow-up

Successfully treated by a LLMD and is pain-free.  What’s sad is if her infection had been recognized and treated early, she may not have developed Autoimmune Juvenile Diabetes.  Today she is attending college and is on the Cheerleading team.  Remains symptom free.

Case #7 Female age 20

College student with a 4.0 has was taken by ambulance to the ER for sudden onset of panic and cutting in the month of May.  Diagnosed with sudden onset of bipolar disorder!  Later develops racing heart, balance issues, migrating joint pain and incontinence.  She tells doctors “the woods are my beach” yet was never tested for tick borne infections.

Supporting evidence

Multiple Tick bites, lives in an endemic area. Tested positive for Lyme and Bartonella. Past history of asthma like symptoms and migrating joint pain.

Follow-up

Failed by medicine, parents took her to an INFECTIOUS Disease physician who told them “Lyme can not cause her symptoms”. All antibiotics were stopped. She has since been admitted in and out of at least 10 psychiatric hospitals over the last two years loaded up on psychiatric drugs and discharged. Today, she now suffers from seizures!

Case #8 Female age 9

Third grader develops asthma-like symptoms. Later develops a racing heart with heart beats as high as 230 beats per minute. Parent educated on Lyme disease and possible effects on the heart.

Supporting evidence

Lives in a Lyme endemic area, sudden onset.  Pediatrician ignores Lyme testing, removes the child from recess and gym until seen by cardiology. Child was cleared to resume full activity with no cause to her sudden episodes of tachycardia and air hunger.

Follow-up

Another child possibly set up for chronic Lyme. She continues to have episodes of racing heart rate and shortness of breath.

Case #9 Male age 15

Parent reports a tick bite and developed a sandpapery rash a few days later.  Seen by pediatrician and requested a clinical diagnosis of Lyme disease. Pediatrician ignored the history of the reported tick bite and instead stated the rash resemble strep. Parent expressed concern that he never  had strep nor does his throat hurt.  The pediatrician continued to culture for strep and gave prescribed ten days of amoxicillin and advised stopping the antibiotic if the culture is negative.   Child was seen the next day by a llmd and suddenly realized his years of intermittent ankle and knee pain were not growing pains. His years of feeling dizziness upon rising was not benign cardiogenic syncope. His diagnosis of Asthma was air hunger.  Parent listened as her son told the LLMD he suffered from drenching night sweats and so much more. Things teenagers think are normal.

Supporting evidence

Symptoms began after moving to a lyme endemic area on 5.5 acres. History of tick bites. Tested positive for lyme, bartonella and babesia.

Follow-up

Successfully treated with multiple antibiotics and currently in remission and attending Virginia Tech.

Case #10 Female age 20

Several years of chronic pain, insomnia, asthma like symptoms, shooting pains up her arms and chest heaviness. Night sweats, stomach issues and Severe sudden nosebleeds, racing heart rate and difficulty focusing.

Supporting evidence

Lyme endemic area. Tested positive for Lyme and Babesia.

Follow-up

Treated successfully by a LLMD

Case #11 Male age 14

Colleague’s nephew developed a sudden onset of cutting, mood swings, outbursts was diagnosed with Bipolar disorder and admitted to a psych ward for 30 days and place on multiple antipsychotics.

Supporting evidence

Sudden onset, soccer player, lives in an endemic area.  History of tick bites. Tested positive for Lyme and Bartonella.

Follow-up

Treated by LLMD Psychiatrist and LLMD. Patient is back to baseline and off antipsychotics.

Case #12 Male age 8

Third grader diagnosed with Autism has a long history of migrating joint pain, hears voices, night terrors, severe headaches, ringing in the ears and night sweats.

Supporting evidence

Lyme endemic area. Autism is a clinical diagnosis, he was never tested for tick borne infections until recently. He was positive for band 23 IGM.

Follow-up

Seen by a Neurologist who advised the family he was negative for Lyme disease. Again, was this child ever Autistic or is this medically induced Autism?

Case #13 Male age 8

Second grader diagnosed with Autism. Unable to communicate. Suffers from severe stomach pains, constipation. Hx of low vitamin d, inflamed lymph nodes, crying spells.

Supporting evidence

Parent educated on Lyme symptoms, he was positive for IGG band 31, 41 58, and IGM 31 on Igenix.

Follow-up

Seen by Infectious disease and told he did not have Lyme and that Igenix is not a reliable lab. Case closed.  Again, was this child Autistic or was this medically induced Autism?

Case #14 Male age 24

Seen by several physicians for brain fog, severe fatigue, night sweats and severe headaches.

Supporting evidence

Tested Positive for Lyme and Bartonella. Lives in a highly Lyme endemic area. Constantly in the woods, multiple exposure to tick bites.

Follow-up

Began treatment with a LLMD but cannot financially afford. Has since tried an INFECTIOUS disease doctor and was told he was a very difficult case but he guaranteed him he did not have Lyme disease. He was referred to neurology and his health continues to spiral out of control.  Today, he is unable to work and suffers daily.

Case #15 Male age 6

Sudden onset of Grand Mal Seizures. Sixteen within 2 weeks. Seen by a top children’s hospital. Parent inquired about Lyme testing and neurologist told them Lyme does not cause seizures.

Supporting evidence

Lives in a endemic area. PMH of nocturnal seizures at age 3, speech delays, developmental delays. Age 6, c/o painful legs sensations

Follow-up

Child was never tested for Tick Borne infections. On three seizure meds and still having seizures.

Case #16 Male age 5

Sudden onset of migrating joint pain, ankles, hips, knees and fingers. Sudden onset of anxiety, began to pull his hair out. Developed hives and wheezing episodes. Mom reports he had a bite and rash several weeks prior but thought nothing of it. Seen in the ER. Diagnosed with Asthma and virus. Started on steroids :(. Followed up with Pediatrician, parent requested a western blot, the Elisa was ordered and was negative. Child’s symptoms increased, developed knee swelling.

Supporting evidence

Lives in an endemic area. History of a bite. Sudden onset of s/s. Positive Igenex IGM Lyme specific Bands

Follow-up

Child was treated with 21 days of antibiotics. He no longer has wheezing episodes, joint pain has resolved. Hives and anxiety resolved. Hoping this child remains asymptomatic as he had symptoms for over a month and was initially placed on immunosuppressants.

Case #17 Female age 6

Child was Diagnosed as Autistic at age 2. After obtaining her PMH which includes a sudden neurological decline around the age of two.  Child pulls out her hair, has episodes of reflux, she is nonverbal. Can be a danger to herself, very impulsive. Teachers agree, child does not present as typical autism.  Parents educated on Lyme disease.

Supporting evidence

Lives in an endemic area. Was meeting developmental milestones up to age 2 with a sudden decline noted. Child tested CDC positive IGM AND IGG through CDC approved labs. Is this child really Autistic? Should the diagnosis be Infectious Encephalopathy?

Follow-up

Child saw a LLMD and was started on antibiotics. Child became very ill with antibiotic treatment. She became aggressive, ate her own feces, was eating bugs, very irritable. After one month, parents could not handle the neuropsychiatric symptoms, they went for a second opinion to a pediatric INFECTIOUS disease doctor who advised parents to stop the antibiotics and stated 3 weeks of antibiotics was enough to cure Lyme. Child is now left to basically be tortured by her own infectious brain.

Case #18 Male age 20

UPENN student with sudden onset of severe anxiety. Seen by Primary who ordered Zoloft and blamed on college stress. Parent is a nurse, requested a western blot. Physician stated ” I will order the test but highly doubt he has Lyme”.

Supporting evidence

Lives in an endemic area. CDC Positive for Lyme through approved CDC lab and positive for  Bartonella through Galaxy Diagnostics. .  PMH of fatigue, air hunger, mild anxiety, chest pains. Symptoms began in HS, he stated he just thought he was overthinking things.

Follow-up

Improving under treatment with a LLMD

Case #19 Female age 14

Ninth grader with onset of mood swings, Diagnosed bipolar

Supporting evidence

Endemic area with sudden onset. Positive for Lyme and Bartonella

Follow-up

Improving under treatment with a LLMD

__________________________

Respectfully submitted,

Carl Tuttle

Lyme Endemic Hudson, NH

“When “evidence based medicine” has been spun to fit bias agendas and the patient voice has been intentionally ignored who investigates the dishonest science?”

Cc: New York Times Editorial Office

Cynthia L. Sears, MD, FIDSA, President, IDSA

Tick-Borne Disease Working Group

Daniel Dutko, lead attorney Lisa Torrey vs IDSA lawsuit

Court document: 
https://www.dropbox.com/s/18uyrli878ug51m/LymeDisease%20RICO%20Lawsuit.pdf?dl=0

________________

For more on Dr. Shapiro:   https://madisonarealymesupportgroup.com/2019/06/11/dr-eugene-shapiro-medically-unexplained-symptoms/

https://madisonarealymesupportgroup.com/2019/05/20/petition-remove-eugene-shapiro-from-federal-tbd-working-group/Here are a few statements the Shapiro has made on the record:

·       “There is no such thing as chronic Lyme disease.”

·       “90% of Lyme cases are cured with doxycycline for a few weeks.”

·       “Neurologic Lyme in children doesn’t exist.”

·       “This isn’t AIDS that we’re talking about or preventing, folks. It’s not a big deal if you get Lyme disease. It’s easy to treat and cure.”