This webpage displays the written comments received by the Tick-Borne Disease Working Group for the July 2022 meeting. The opinions expressed in each comment displayed on this webpage belong solely to the author of the comment and do not necessarily reflect the opinions of the Department of Health and Human Services (HHS) or the Tick-Borne Disease Working Group. Any information provided in the comments displayed on this page has not been verified by HHS.
Amy Immell
Tulsa, Oklahoma
I have Alpha Gal Syndrome, which I'll just refer to as AGS. I have lost over 10 years of my life to being dismissed on symptoms, lost multiple jobs due to unexplained health problems, been treated like I'm a hypochondriac, and passed along until I now live in poverty and have no health care except what I can get from a free clinic.
It started with a sudden out of the blue increase in my migraine attacks. It was followed by DAILY nausea, vomiting, and/or diarrhea. I've gained weight, had test after test done to figure out joint pain and bouts of my body forgetting to body, occasional rashes, erratic heart rates, heart burn, dizziness, out of control mood swings, bizarre reactions to medications, and more. The list is vast. The last things to actually happen were anaphylaxis. But when that decided to join the party, it came like a wrecking ball. In 2021 I suddenly got to spend a lot of time in the ER, and the hospital said if a doctor couldn't figure it out, they would have to stop treating me.
This year after I complained that I was being dismissed, and forced the doctor into checking my thyroid because it was swelling up and choking me, they tested for AGS. Who knew you could have a reaction by your internal organs swelling? My doctor won't give me my numbers, but said I tested "very positive" and said that I just needed to give up red meat and dairy for 6 months. It is July, and I just had a reaction to grabbing the wrong ibuprofen. I don't think next month I'll suddenly be able to eat a steak and gorge on cheese.
I had to go online and find help from other AGS patients. The resources given by most doctors I've seen is at best incomplete, at worst extremely wrong. I even see other AGS patients think that unless your in anaphylaxis, your not reacting. So even then, I have to be cautious with what others are telling me.
When was the last time you had to rely on other patients to get information about diabetes or other illnesses that require a huge overhaul in diets. When was the last time diabetes was referred to as an "allergy to sugar" and patients just told not to eat Snickers for 6 months?
I write this in hopes that someone takes the initiative to care about the patients and people who have AGS, and honestly other tick born illnesses. I hope that someone pushes for comprehensive medical information for doctors to "at a glance" find and test for. With the updated test codes for the labs. I hope that someone pushes for required ER protocol to pop up if someone says they have AGS and a list of approved, mammal free, medications ER's can use on patients. I hope that someone cares enough to stop referring to this as an Allergy, since it behaves and acts like an autoimmune disorder. I hope that tick prevention kits become something that is automatically given to patients and their families to prevent further bites if possible, and making issues worse.
I also write in hopes that we can just get "mammal" listed as an allergen warning, or just in general dietary info. And with fish and poultry. As much as I don't care what secrets they put in their natural seasonings, I'm learning it's code for beef broth. Or pig fat sprayed to adhere coatings to. Or the downloaded list of alternative names for mammal by products. Or have to use an app in tandem to calling manufacturer's to find out if certain things were filtered through mammal, like sugar. Or if the vitamins used in juice were sourced from mammals.
Thank you so much for your time.
April Lelain Archote
Southwest Missouri
My name is April Lelain Archote and I was diagnosed with Alpha Gal Syndrome in July 2019 after several years of symptoms that progressively worsened. Since then, I have been diagnosed with Papillary Thyroid Cancer, Clear Cell Renal Cell Carcinoma and now a Neuroendocrine Tumor in the head of my pancreas.
I have undergone 2 partial nephrectomies and a partial thyroidectomy since December of 2020. The treatment options for me have all been surgical due to me having Alpha Gal Syndrome. Now I am in the fight of my life, desperately trying to avoid having to do a Whipple Procedure where they can not give me pancreatic enzymes and insulin if my pancreas doesn't bounce back because there are NO safe options. I've taken to social media begging for ANYONE, a researcher, a cancer doctor to help me find the right people to help me find someone who can prolong my life because I have a daughter that I want to still be a Momma to and I was recommended to write to you and the Tick-Borne Disease Working Group. I have called the NIH and National Cancer Institute, asking for help. I have emailed the company Revivicor who has the current FDA approval for production of Alpha Gal safe pigs to be used for medical purposes. They did say I could sign a release form to potentially receive free Alpha Gal safe pork though. There are no clinical trials for someone like me. I have volunteered, but there are no trials for people to join. My quality of life consists of trying to stay hydrated and eating what very few safe foods for me that I can. AGS set off Mast Cell for me and even with histamine blockers and enough antihistamines to try to control it, it isn't enough. Most of my medications have hidden mammal in them because I, nor my Pharmacy, can find safe alternatives. Nor can I afford as a disabled single mother the cost of compounding my medications. I am quickly running out of time this side of Heaven unless your Committee can make things move in research and development for people like me. I may not live long enough to see the day there are safe pancreatic enzymes and insulin, but I'm doing my part to ask for change and advancement.When I am hospitalized, my parents have to bring me in ice coolers of safe foods I can eat cold because the hospitals can not or do not accommodate for my dietary restrictions. I am anaphylactic to fumes of cooking mammal. I've had pork and beef brought into my hospital rooms that caused anaphylaxis. I can't go into grocery stores if they have a deli, I have to avoid certain areas of town if they have a lot of restaurants, especially BBQ places. I've lived in a bubble for over 3 years and it took years before that because I, nor my doctors, knew what AGS was.
There isn't just one thing I can ask for in under 3 minutes or 4 pages. There are many. Help change the food label laws to include all mammalian products and by-products, make a database of safe medications that patients, doctors and pharmacists can access. Make it a priority to advance the research on the genetically modified pigs to make safe enzymes and insulin, because people in the AGS community need help NOW. And go in and reeducate every last doctor in the USA coast to coast of what Alpha Gal Syndrome is and what to look for and how to properly test for it. Say Mammalian Allergy, not Meat Allergy because we CAN eat meats like chicken and fish and many newly diagnosed people and healthcare providers who are not properly educates think we all have to be vegan.
In closing, I'm asking for compassion. Give Emergency Use Status to any company that is trying to make mammalian free medications like insulin and enzymes, there are so many of us waiting and willing to sign up as volunteers.
Thank you for time and consideration.
Betty Gordon
Ames, Iowa
It's taken me 7 years of HELL to get this far!!
Jack's 3rd brain autopsy is being done in New York City's Columbia University, tick-borne disease research center by Dr. Andrew Dwork, Professor of Clinical Pathology and Cell Biology in Psychiatry.
He got Jack's brain thru California's Lyme Disease BIO BANK supported by the Bay Area Lyme Foundation and working directly with NDRI, NATIONAL DISEASE RESEARCH INTERCHANGE, PENN.
He has spent 5-6 months researching Jack's brain from late 2021 until now.
He recently asked for Jack's clinical/medical records to WRITE UP HIS CASE STUDY TO BE PUBLISHED IN NEAR FUTURE!! whoopie ;)
I read thru 800-900 pages scanning almost 300 pages for him to use based on Jack's 2 other brain autopsy results found below!
Now it's wait and see.
When Andrew is done, Jack's brain tissue will be sent to bartonella expert:
Monica Embers, PhD, Tulane National Primate Research, Associate Professor of Microbiology and Immunology, Director of Vector-Borne Disease Research, New Orleans, Louisiana.
My husband, JACK GORDON, died Nov. 13, 2014, suddenly after being diagnosed 2 nights earlier with advanced LUNG/LIVER CANCER! What a shock!
I donated Jack's body to Des Moines, Iowa osteopathic medical college for medical study purposes for their students.
What I really wanted was a BRAIN AUTOPSY. I was told "NO, WE DON'T DO THAT"!
HOWEVER, I was NOT told...we remove the brains, preserve them correctly, and use them for study purposes for our students.
Had they told me this, I would have pursued getting a brain autopsy done from a LYME literate pathologist promptly.
Almost 1 year later, Dr. Alan MacDonald did Jack's 1st BRAIN AUTOPSY finding the below and making WORLD-WIDE HISTORY having these 2 diseases never found together before!!
LEWY body dementia causing his visual and violent hallucinations like actor/comedian Robin Williams had!
neuroborreliosis / chronic lyme disease!
plus a cluster of 24 filarial nematode parasitic worms having LYME disease inside of them!
Alan promised me that he would write this up as a case study to be PUBLISHED in a medical journal with me as "1st co-author over us 3 medical folks involved".
Alan's frontal temporal dementia acted up preventing him from doing as he promised.
So I had a 2nd brain autopsy done by Marna Ericson, PhD, Director of Research, Hormel Institute, University of Minnesota.
Marna found these results:
lyme disease also plus
bartonella / cat scratch disease, 2 species:
Bartonella henselae (B. henselae) from cat bites or scratches, and Bartonella quintana (B. quintana) transmitted by the human body louse.
Marna didn't write up Jack's case study to publish either!
fyi, Jack was NEVER diagnosed in 35 years with any of the above diseases found in 2 brain autopsies shown above!
After my positive western blot igm/igg done by Igenex lab, California, I had Jack's blood sent there too. He had many positives but lacked 1 band of having 4 positive bands to meet CDC/IDSA strict guidelines.
I'm 53 years chronic lyme/bartonella misdiagnosed for 35 yrs. by 40-50 drs!!
Unacceptable for both Jack and me.
Betty Gordon, Ames, Iowa
Center for Lyme Action
On behalf of Center for Lyme Action, I respectfully submit the attached recommendation for an additional Priority for your report to Congress.
While the federal government funding for addressing Lyme and tickborne diseases is growing, there is no agency that is centrally focused on this problematic health issue affecting Americans in every state. Consequently, we see a significant need for a structural change in the federal government and recommend the establishment of a National Tickborne Disease Institute. This institute would function much in the same way as the National Cancer Institute.
A Tick-borne Disease Working Group Priority - July 2022
Submitted by Center for Lyme Action
PRIORITY SUMMARY
Establish the National Tickborne Disease Institute to improve research and accelerate innovation for Lyme and tickborne diseases to benefit the health of all Americans.
PRIORITY DESCRIPTION
The present state of our understanding of Lyme and tickborne diseases is a consequence of the lack of broad advances across the full scope of biomedical sciences. In order to effectively address Lyme and tickborne diseases, it is essential to use all of the biomedical resources of the National Institutes of Health (NIH) and advance the national effort against these debilitating and sometimes deadly illnesses.
NATIONAL TICKBORNE DISEASE INSTITUTE (NTDI)
The National Tickborne Disease Institute will develop and execute a strategic plan to combat Lyme and tickborne diseases. The NIH Strategic Plan for Tickborne Disease Research was published on October 9, 2019 and serves as a promising direction for implementation.
The director of the National Tickborne Disease Institute is appointed by the President and advised by the National Tickborne Disease Advisory Board. The Director oversees the National Lyme and Tickborne Disease Centers of Academic Excellence with advice from the National Tickborne Disease Advisory Board. Authorized levels of funding are up to $500,000,000 by the third fiscal year after formation of the NTDI.
NATIONAL TICKBORNE DISEASE CENTERS OF ACADEMIC EXCELLENCE (NTDC)
The National Tickborne Disease Centers of Academic Excellence is a university and private institution research program established among at least 20 state-of-the-art research centers nationwide. Recognized for their scientific leadership in laboratory and clinical research, these centers will have a streamlined focus on developing new and better approaches to preventing, diagnosing, and treating Lyme and tickborne diseases. Authorized levels of funding for the NTDC begin at $200,000,000 and are $300,000,000 by the third fiscal year after formation.
NATIONAL TICKBORNE DISEASE ADVISORY BOARD
The National Tickborne Disease Advisory Board approves a professional judgment budget each fiscal year and approves all research grants. The board consists of 15 members, with six members appointed by the President, four members appointed by Congress, and five ex-officio members. Three of the six members appointed by the President and two of the four members appointed by Congress shall be representatives from the general public. The Secretary, the Director of the Office of Science and Technology, the Director of the National Institutes of Health, the Chief Medical Officer of the Veterans' Administration and a medical officer designated by the Secretary of Defense shall be ex officio members of the board. The director may call a meeting to obtain the advice of the advisory board on research priorities.
With the lack of research and reliable diagnostics, chronic underfunding, and lack of attention within the U.S. Government, it is necessary to establish a solid foundation from which innovation and medical advances for Lyme and tickborne diseases can evolve and thrive. Therefore, this Tick-borne Disease Working Group recommends amending the Public Health Service Act to improve the national effort against Lyme and tickborne diseases within the National Institutes of Health by establishing the National Tickborne Disease Institute.
Carl Tuttle
Hudson, NH
Member of NH Gov Chris Sununu's Lyme Disease Study Commission
http://www.gencourt.state.nh.us/statstudcomm/committees/default.aspx?id=1515
To the Tick-Borne Disease Working Group,
I would like to call attention to a recent paper published in the open access journal BMJ Global Health “More than 14% of the world’s population likely has (had) tick-borne Lyme disease” 1 indicated by the presence of antibodies in the blood, revealing a pooled data analysis of the available evidence.
As of July 2022, current world population is 7.9 billion and 14% of that number would equal 1.1 billion Lyme infections.
The CDC claims that a conservative 10% of those treated for EARLY Lyme disease do not recover ending up with Post-treatment Lyme Disease Syndrome. Other studies identified in Dr. John Aucotts’s 2020 paper has that number as high as 36 to 50% 2 and yet no one is keeping track of the number of individuals left disabled by the disease; those who went years before diagnosis missing the narrow window of opportunity for successful short-term treatment.
If we use say 20% as a multiplier, 220 million may have been left in a debilitated state and the only thing we have in the pipeline after thirty years is a vaccine fast-tracked by the FDA in 2017.
It would appear that all the eggs have been put into one basket for the sake of a vaccine leaving the sick and disabled to fend for themselves. Sicken in place while we wait for a vaccine; sound familiar? A chronic relapsing seronegative disease doesn’t fit the vaccine model. Is that why we have avoided these patients and why the CDC refuses to recognize the disabling stage of Lyme disease? If we studied the horribly disabled, chronic infection would be uncovered. Post mortem studies have already proven that we have been dealing with an antibiotic resistant/tolerant superbug.
The false narrative that Lyme disease is hard to catch and easily treated with 2-4weeks of antibiotics was created by those who had a vested interest in profiting from a vaccine. The CDC has propagated that false narrative for decades and to this day refuses to recognize the disabling stage of Lyme disease. Wake up America!
Carl Tuttle
Hudson NH
References:
1 More than 14% of world’s population likely has (had) tick-borne Lyme disease
https://www.bmj.com/company/newsroom/more-than-14-of-worlds-population-likely-has-had-tick-borne-lyme-disease
2 Post-treatment Lyme Disease as a Model for Persistent Symptoms in Lyme Disease
Alison W. Rebman and John N. Aucott Feb 2020
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7052487/
Diane Mckinney
I would like to briefly share my experience with finding helpful care when I was diagnosed with Alpha-gal. My name is Diane McKinney. I am 71 years old, in mostly good health, active, and just retired in June. At the end of October, 2021, I started coughing and had a strange and sudden onset of an allergic reaction. I realized within a few minutes that I was experiencing anaphylaxis.
I had no idea why. We called 911, and I tried to explain to the paramedics that I couldn’t project my voice, because my throat was swelling. Nor could I talk, because my tongue was swollen. They used an epi pen and gave me oxygen. Hives began to cover my body. No one at the hospital was able to explain my reaction. I was given other antihistamines, and kept overnight. Upon release, it was suggested I see my primary care physician. I also set up an appointment with an allergist. No doctor that I tried to see was in a hurry to make an appointment with me. When I saw my primary doctor, he had no idea why I would have had the anaphylaxis. I was desperate to prevent it from happening again. But until I saw the allergist, I had never heard of Alpha-gal. The allergist listened carefully to my time line of that day. The important clue was that the reaction happened two hours after I ate dinner.
When he called me two days before Thanksgiving to tell me that the blood test resulted in the diagnosis of Alpha-gal. He told me to avoid all mammals and all mammalian by products, as well as dairy products. But he had no written information, and I absorbed only a little about what he told me. It is difficult to find the words that convey my feelings of confusion and panic at this point. I read that fruit and vegetables were OK, so for the next couple of weeks, all I could manage to eat were Clementine Oranges.
More people are diagnosed each day. It’s important to support a newly diagnosed patient with a strategy of what can be eaten as well as what can’t. Finding the Alpha-gal support group pages saved me from the fear. I realized that in time, I would not feel so overwhelmed. But if I hadn’t found those pages on Facebook, I don’t know how well I would have coped, or how I would have survived.
We need ingredients clearly marked on food packages. We need to be able to go out of town and find a place that prepares and serves Alpha-gal safe food.
We need the community, paramedics, hospital personnel, and medical doctors to be informed.
I wasn’t surprised to learn that many people had several anaphylactic shock experiences before getting a correct diagnosis.
Please help up get information out to people. Please figure out a way to support a newly diagnosed patient. It could be a matter of life and death!
Thank you for your time,
Diane Mckinney
Jenn Barrett
Dear Tick-Borne Disease Working Group,
What are we doing to help patients who are currently suffering today? There is a huge focus on better testing and prevention, which is great, but what about the people who are already sick? What is the working group doing to help chronically ill patients today? Why isn’t the government funding large scale patient trials on potential treatments? Why aren’t we looking for a cure? Why isn’t treatment affordable? I have spent years suffering from Lyme and other TBDs. As if the symptoms are not bad enough, I faced enormous challenges getting a diagnosis, coordinating care, and paying mostly out of pocket for my treatment, all while I was extremely ill. No one should have to go through what I went through, and yet many thousands of people do.
How can the TBDWG and Congress help patients immediately? Mandate insurance coverage. Treatment should not be available only to those who can afford it. The government has mandated insurance coverage for other illnesses in the past, we need your help now. For specifics, please read my article: It’s About Lyme: Why Congress Must Enact Medical Insurance Coverage Laws for Lyme Disease Patients Now (https://digitalcommons.law.seattleu.edu/sulr_supra/20/).
Please feel free to reach out with any questions, and let me know if I can assist you in any way.
Sincerely,
Jenn Barrett, JD, MBA
Mr. J Meek
Savannah, Georgia
I was diagnosed with Lyme disease then a late additional diagnosis of Babesia in 2016, following a camping trip near my home in Somerset County, New Jersey (note: I now live in Georgia)
Subsequent to this diagnosis was complications including meningitis (unconfirmed), carditis, severe brain fog and Hemolytic anemia.
Some months after recovering, I began to experience chronic inflammation which still persists.
Although I have sought input from multiple healthcare professionals, my inflammation and Brain fog symptoms continue without any effective solutions offered to me.
At a time where our community is dealing with Long haul COVID whose symptoms appear identical to what I experience, it is critical that the journey of those either experiencing Lyme disease or with persistent post Lyme disease conditions are heard.
There is a favorable opportunity to incorporate research and education into diagnosis and treatment of these conditions especially to facilitate more effective and urgent treatment of patients and avoid the humiliating interactions with a healthcare system both unprepared for the acute and/or chronic phases of these diseases and who have a sense that Lyme disease is not a serious condition and those with persistent symptoms are hypochondriacs.
To illustrate how far we need to come in this area, I was one of the 65% of Lyme patients with no ‘target’ inflammation, yet the lack of this was an explanation from HCP’s why they doubted I had Lyme disease.
Given the most recent studies into the mortality of undiagnosed tick borne conditions, and the false diagnosis of conditions including Dementia, ADHD and Fibromyalgia, it is critical that we improve the approach to tick borne diseases in both acute and chronic phases of the disease.
Thank you for the opportunity to contribute to this critically important conversation.
Regards
Mr. J Meek
Julie Osman
Missouri
To the Tickborne Disease Working Group:
Hello. As a 5 year diagnosed Alpha Gal Syndrome individual, and as a healthcare provider, I would like to give some of my perspectives and related experiences. I am a registered nurse with over 30 years of experience, with most being in the OR. I am currently the director of a surgery department at a small critical access hospital. I had no history of food allergies prior to this diagnosis, with the only other allergy being a hive reaction to Penicillin as a child.
I consider myself to be an honest and straight forward person. I have always felt like I have had decent relationships with the doctors and other licensed providers that I have worked and seen professionally. This made it very hard for me to take when an allergist totally denied my reports of how I was feeling or stating I was reacting to different situations. I was told in no way could I be having issues with itching or coughing, tongue swelling, light headedness, or other in the presence of beef cooking. I was told that if I was having paresthesia-type sensations when walking through certain stores with open food or other smells, it had to be from diabetes, although i had never had such numbness or tingling any other time. When I asked about the histamine bucket theory, it was shot down also as not existing. I was told that I didn't really need to come back. The only treatment for this was to "avoid". I really left dejected and feeling like I had not ever been treated like this before. This allergist was very quick to pinpoint the cause of my issues, but offered no guidance to help me manage it. This was very early on in my path. I did make it to UNC to Dr Commins and he was able to at least explain more things and assure me I was on the right path.
Lots of great information is shared on the FB groups about how to get safe meds, have surgical and dental procedures, and get emergency care safely. One would think that with my medical background and ability to be assertive that it would be easy for me to communicate to my medical professionals when I am trying to receive care. Not so much. Being able to see both sides, I truly believe there is a fine line between not appearing to be too crazy and staying safe. I've watched too many patients come in and start telling them everything they can't have. The practitioners are usually agreeable, but that may be by eliminating that option all together. I don't want to rule out for those caring for me some of the medications or treatments that may or may not cause issues with Ag, but could be life saving for me. Hemostatic agents, anticoagulation, and pain control are good examples.
I have had a few procedures with sedation and two surgical procedures with anesthesia since diagnosis. I have found that the computerized medical record's allergy database does not contain Alpha Gal. In ours, you have to list everything separately, or as best you can. I listed Beef containing products, byproducts, Pork containing products, byproducts, Gelatin, and have to list as foods also. At one of my offices, they continue to list it as an Alpha glucosidase (enzyme) allergy. Even though I write out a specific correction and discuss it with them each time. I have heard of several folks having that discrepancy made. Updates should be made to these databases. Even if listed, however, I am not sure if there are any that can scan for the mammal byproducts or sources of byproducts used in meds.
When I go for procedure, I find the first people I talk to are receptive, usually nurses. They talk to me about who they know with the allergy if anyone and are usually attentive to what they are giving me. Then you get to talk to anesthesia, who I do find hard to get the memo across to (this is obviously different facilities than I work in). I can write Alpha Gal down at the top of my allergy list and they will scan over it every time and be like "so you're allergic to pcn." I always have to force a conversation, but they think it's only a food allergy and no food here...Also when we discuss actual meds, it's more asking me if I can have it rather than them looking the med up and letting me know or just finding out and using an alternative on their own. "Can you have Propofol?" How many lay persons can answer that question?
Just before having sedation, the nurse did a time out and read my allergies. The MD, radiologist, responds with "why doesn't she just eat bison?" Duh. Very reassuring just prior to going to sleep. I had a second procedure in the same facility a week later. Different doc but same sedation nurse. Went through all the discussing, marking, time out, listed Gelatin as a specific allergy...I found out that they had inserted Gelfoam (gelatin hemostat) into the cuts to stop the bleeding. Did it kill me? No, but it could not have helped the already inflamed liver. My liver enzymes remained high for a year. Does that mean I would say never use Gelfoam? Hopefully, there would be another hemostat available, but I would want to leave a little discretion open to my provider if I had a hemorrhage.
I had a surgical procedure and thought I needed to up my assertiveness and be my advocate to have a safer procedure. So I discussed this with my colorectal surgeon at each visit prior to my procedure. I emailed his office staff a reminder of items that could be mammal containing including the Gelfoam, and gut sutures since I thought they could be used for this procedure. Staff assured me she had given this to doc and all would be good. On the surgery day, he was running hours late, on a holiday weekend, and we rushed on in the room. My incision failed to heal. ? wonder why...I had to go back for a second procedure and doc assured me several times "no gut sutures". And he called after and told my husband "no sutures'.
Another time I stayed overnight at my facility. I'd been on clear liquids so had safe lemon ice, etc. The dietary director came to visit me to ask me what she could possibly serve me. Luckily I got to tell her I was going home! I am lucky to work with nurses that all take this seriously and try to be accommodating in the break room and with safe snacks. This was considered a "rare" condition but we have an ER doc and a couple others at our small facility of 200 staff. I am starting to hear of more at least "knowing" someone that has this allergy. We need to do a lot more to get the word out to providers. I have been excited to see an article in our professional journal (AORN) and a CME for all providers.
Kari Cook
Charlotte, North Carolina
I would like to describe my frustrating experience in 2021 when I became ill following a tick bite. Interestingly, I was keeping a log about how I felt physically at that time because of an experimental diet I was doing, so I have a lot of details to share.
June 19, 2021 I went to a local nature preserve for birdwatching. When I came home, I found an attached tick on my ribcage. This is quite common where I live and I removed it, showered, and went on with my day.
The next two days I wrote in my log that my weight was up 5 lbs and I felt swollen all over, that I had a bounding pulse when lying down, and some vertigo when lying down. I attributed all of this to a likely migraine. We were having what I call 'migraine weather' that week - hot, humid, threat of storms each day. I also noted that my skin felt sore.
June 26-27, 2021 I noted that I had bad headaches, a stiff neck, and cold sweats. By the evening of June 27 I had shock-like nerve pain over the left side of my head and body and a temperature of 99.5. I figured I had finally caught COVID.
June 28, 2021 I had a fever of 102 with shaking chills at times and shocking nerve pain all over my body. By now I was having a difficult time sleeping as I would have periods of overheating followed by the chills. The nerve pain was by far the worst symptom at this point waking me from sleep and making talking, eating, and drinking excruciating. It was random, unpredictable ice pick pain in my head, throat, ears, legs, arms, and so on.
June 29, 2021 I called my PCP to see if I could get a same-day visit. On the basis of the fever, they refused to see me without a negative COVID test. I was able to get a rapid test at Walgreens (negative) and went for the appointment. Though I had no respiratory symptoms at all, my doctor tested me for strep, COVID, and RSV (all negative). I was not certain the tick bite was relevant but I told him about it including the date (10 days prior). He looked at the bite site which had nothing but a tiny red mark and said it was nothing at all. That there would be a bullseye rash if it were something. He refused to test me for any tick-related illnesses, told me I had an 'unknown virus' and sent me home. Feeling frustrated, and considering the negative tests for other things, I began looking things up online about tick-borne illnesses and wondered if I had Rocky Mountain spotted fever, as that seemed most common for my area.
July 1, 2021 no change to the fever or nerve pain but now I had a pale rash, resembling small bruises, all over my trunk and arms. I had lost all appetite and had not eaten any food for about 4 days. I also could barely move my thumbs.
July 2, 2021 I went to urgent care as the thumb pain had progressed over both hands. I could not turn a door knob, my hands were so painful. The rash had spread and my feet were now affected by what seemed like sudden arthritis. One knuckle on my left hand was swollen and red. The rash had spread to my hands. Urgent care doctor mentioned my mental health noting that I seemed 'agitated' (I cried during the visit) and she did not want to test for tick-borne illnesses either. She did not understand I was agitated due to the pain, fever, lack of sleep, lack of food, and lack of care or treatment. Since I had insurance, she finally agreed to test for RMSF and Lyme though she seemed to think that was silly. I was again tested for COVID, influenza, and a couple other things (all negative). She said I would have to wait til test results came back for any treatment, and those would be delayed due to the 4th of July holiday.
July 3 - 6, 2021 All symptoms remained firmly in place - high fever, shooting nerve pains, lack of appetite. The new arthritis worsened and began to spread into my large joints (elbows, knees). I developed a new rash over my arms and legs that looked like razor burn. On July 6, 2021, my test results came in as positive for RMSF. The urgent care called in 10 days of doxycycline to be taken twice daily. By the end of the first day, my fever was gone. The other symptoms subsided more slowly but by July 12, 2021, all acute symptoms were gone.
I decided not to return to my longtime PCP who ignored all of this, and saw a new doctor on July 16, 2021 for follow-up. She informed me the wrong test was done at urgent care for RMSF, though she believed that's what I'd had based on my symptoms. She ordered some new tests which were specific to RMSF which were positive and which she said confirmed diagnosis.
I would note that I looked up CDC guidelines for tick-borne illnesses and read about a rather high death rate if RMSF is not treated timely. I waited 17 days for treatment though I sought help promptly once the fever began and was able to provide all the details one could want about a tick bite, onset of symptoms, and everything else. The guidelines I found say to prescribe doxycycline if there's any good reason to suspect a tick-borne illness even before it is lab-confirmed. This was not followed at two different doctor's offices in a state with one of the highest rates of RMSF. For months after this, I experienced extreme fatigue, new swelling in my extremities, and other issues. When I finally got COVID in January 2022, though my case was quite mild overall, some of the flat pink rash spots emerged again while I had a fever.
After this experience, I no longer hold physicians in high regard and I don't trust them. I have sought out alternative doctors for any health issues since this happened, though not for any lingering symptoms since the infection since I do not think I will be believed. I have opted to try to treat myself using diet changes and exercise to try to rebuild my health from any damage this may have caused to me.
I wanted to share this because I find it quite shocking that no tests were done (or were only done reluctantly and with my insistence) and no antibiotics prescribed when I literally had a history of a tick bite plus symptoms. I would understand it better if I had no memory of finding an attached tick or had only vague symptoms. It seems like tick bites are not taken seriously whatsoever.
Anonymous
Oak Grove, Oregon
I was bitten by tick at Silver Falls State Park in Silverton, Oregon in 1989. I reacted to the bite within hours. My leg developed a bulls-eye rash and I had flu-like symptoms for about a week. However, I was not diagnosed with tick borne diseases until 2018 when I tested positive for Borrelia burgdorferi F7, Osp B, Osp C, Borrelia miyamotoi, Borrelia recurrentis, Babesia divergens and Bartonella henselae. The bulk of my symptoms are related to the Bartonella henselae infection. These symptoms include severe food sensitivities, debilitating short-term memory issues, fits of unexplained rage, constant pain in the soles of my feet, back pain and many others. The wide range of impairing symptoms combined with inadequate screening tests and the unsupportive medical community, make tick borne diseases far worse than they need to be. Caught early and treated aggressively, these diseases are controllable. There is no need for so many people to suffer.
You will no doubt hear from many people more qualified than me regarding the inadequacy of the current testing/screening system. All I know is it should not take 30 years to be diagnosed with these diseases. I am excited about the progress being made, but we need more. Much of the difficulty I personally faced was the unwillingness of the medical community to test for tick borne infections. I was told everything from "We don't have tick borne disease in Oregon" to "You don't want to know if you have that, it's not curable."
In Oregon, I know of no MDs who treat tick borne illnesses. I realize this is outside the scope of your committee but it is related. This delays early screening by weeks, months and years. Additionally, it forces vulnerable patients into a system of alternative care givers who are at best knowledgeable and well-trained. However, at worse, they are providing inadequate, unhelpful, and untested treatments at no small expense to a population of people who are desperate for help. This situation needs to change. You can have the best testing and treatments on the planet, but if the medical community is not trained and supportive, it will be all for naught.
Thank you for your attention to my concerns,
Anonymous
To whom it may concern:
Ehrlichiosis infuriates me. Last summer, my eight year old daughter nearly died from it.
The tick that bit her DID NOT attach. I keep reading “check your kids’ scalps and entire body for tick heads”, “use tea tree mint to deter ticks”, “avoid heavily wooded areas”.
We did ALL these things. We check her scalp and body every night in the spring/summer. I use tea tree shampoo, conditioner, body wash, and a leave in spray. There were NEVER any signs of a tick.
We are from Indiana (where she got bit) but it wasn’t until our first day on summer vacation at the beach in 2021 when Nora wasn’t feeling well that she climbed into my lap to snuggle and I felt a bump on her head. Upon inspecting it, I called for family to take a second look. We agreed it could very well be a tick bite so I took her to urgent care. I stressed how strongly I felt that it was a tick bite. The provider dismissed it as an infected hair follicle and sent us home with antibiotics.
Five days later, Nora started feeling worse and developed a fever and flu like symptoms. I treated it at our vacation rental and when the fever was still present two days later I took her back to urgent care. I suggested that it was related to a tick bite and asked if we should test her. The provider said no and sent us home with a z-pack.
We ended up in the ER for our first time the very next night. They gave her fluids, tested her blood and scanned her appendix. They told us it looked like something viral and to go home, stop the z-pack, and treat just the fever and get lots of rest and fluids.
She seemed like she was getting better but three days later took a turn for the worse. She also developed a severe rash all over her body. We went to the ER in Daytona again and they called for the transport team at Arnold Palmer Hospital for Children in Orlando. She was in respiratory failure and septic shock. She also had strep but tested negative for Lyme. They would have transported via helicopter but the weather was bad, so they raced down I-4 with lights and sirens. I had to sit in the cab with the driver while Nora was in the back with medics. I didn’t know if she was alive or dead for 45 minutes. My husband Nick had to drive alone back to the condo to pack us, get our son Logan situated to stay with our family who was vacationing with us, and met us in Orlando as quickly as he could.
In Orlando, the symptoms lined up with Toxic Shock Syndrome and/or MIS-C. Since she was negative for Lyme, we assumed these scenarios were more likely than a tick bite but we kept it in the front of our minds. After nearly three days on antibiotics that should have treated TSS or MIS-C, the doctors from Infectious Disease and Hematology took over. They began treating her immediately for tick borne illness.
A few days later we had a positive result for Ehrlichiosis as well as secondary HLH. HLH on its own is terrifying but when it’s brought on secondary to another infection it typically clears up with the treatment used on the primary infection. In Nora’s case, the HLH caused a massive drop in white blood count and caused significant and problematic inflammation. It surrounded her brain causing encephalitis and delirium with hallucinations. Her lungs were filled with fluid to the point she struggled to breathe. She was in excruciating pain and the decision was made to intubate so her body could rest and begin healing.
She spent a week on the ventilator while her inflammation and rash cleared, and the fluid drained from her lungs. Once she was extubated and awakened, she was still delirious and had very vivid nightmares and hallucinations. She didn’t even recognize me at first due to the tricks her mind was playing on her. Her body was withdrawing from the fentanyl used for sedation. As she slowly weaned from the medication, she became more and more like herself and began to make improvements. In the end, she was hospitalized 21 days with 14 in the ICU. We were away from home, family, friends, and our son.
ALL OF THIS over a tick. It bit her, infected her, and fell off. We had no physical evidence she had been bit. By the time school started, my daughter had spent 6 of her 10 summer weeks sick. She had to re-learn to do basic things like eating, dressing, and walking, and she missed out on so much. We thank God that the infection didn’t affect her brain. It could have been much, much worse. I can barely think of it without being physically ill, but she almost died.
It’s important that people know this. Ehrlichiosis is becoming more common. It’s less common to become as sick as she did because of the HLH. Tick borne illnesses are easily treated with doxycycline and the medication does not have major side effects. Healthcare professionals (and the general public) need to be better informed and educated about tick borne disease. I wish I had known more.
I will never stop advocating for my daughter and I will push even harder in the future. I will do everything in my power to keep Nora safe from ever again having an experience like this. I hope that sharing Nora’s story helps prevent anyone else, especially another child, from enduring what she did last summer.
We will be forever grateful to the staff at Arnold Palmer Hospital for Children for saving our daughter’s life.
Please reach out if you have questions. If I can help advocate for more information and knowledge, please let me know.
Thank you
Lonnie Marcum, PT, Health and Science Writer for LymeDisease.org, Member TBDWG Tick Ecology Subcommittee
How prevalent is Bartonella in patients with Lyme disease?
At a meeting of the federal Tick-Borne Disease Working Group on March 1, Ben Beard, PhD of the CDC made a highly significant statement that passed without remark at the time.
Dr. Beard’s statement was in reply to a comment by Monica Embers PhD, also a member of the working group. Embers noted several slides from Beard’s group, The Clinical Presentation and Pathogenisis Subcommittee, included neuropsychiatric illness and neuropathic manifestations of lyme.
Dr. Embers mentioned “we’re seeing a lot more neurophsychiatric disease associated with Bartonella. I’m wondering your thought process and your recommendation for Bartonellosis?”Dr. Beard said, it is time to consider Bartonella as a co-infection of Lyme disease, regardless of whether it is tick-borne or not because it is a very common illness and so frequently associated with Lyme disease.
In MyLymeData, LymeDisease.org's patient-led research project, 60% of patients with chronic symptoms of Lyme disease report co-infections. A previously published LymeDisease.org survey of over 3,000 patients found that over 50% had co-infections, with 30% of patients reporting two or more. Bartonella (28%) was the second most commonly reported co-infection associated with chronic Lyme disease. (Johnson, L., et al., 2014)
An earlier Canadian study found similar rates of co-infection. In this study Bartonella (36%) was the most common laboratory confirmed co-infection in patients with Lyme disease. (Sperling J, et al., 2012)
Bartonella does not respond to standard treatment for Lyme disease, and it is notoriously difficult to detect through standard tests. Bartonella is a disease that is not notified to or tracked by the CDC in the U.S., nor is it included in standard surveillance testing for ticks.
Which leads me to the elephant in the room—How prevalent is Bartonellosis in patients with chronic symptoms of Lyme disease?
What is Bartonellosis?
Bartonellosis is caused by one of many species of the bacterium Bartonella. It is harbored in wild and domestic animals, and can be transmitted to humans through a number of different pathways including fleas, flies, lice, animal bites, animal scratches, ticks, bedbugs, and possibly through maternal fetal transmission. (Maggi RG, et al., 2015; Reis C, et al., 2011)
First identified in 1990, Bartonella henselae bacteria is the most common cause of Bartonellosis in humans. Bartonella henselae infection, also called cat scratch disease, is frequently caused by flea bites or the scratch of an infected cat. The primary reservoirs for B. henselae across the world are domestic and stray cats, and the primary vector is the cat flea (ctenophalides felis). (Breitschwerdt, E.B., 2017)
Prior to 1990, there were only two diseases known to be caused by Bartonella bacteria: Bartonella bacilliformis, the cause of ‘Carrions disease’ identified in 1919; and Bartonella quintana, the cause of ‘Trench Fever’ first recognized as a disease during WW1, but not molecularly identified as the cause until 1961. (Breitschwerdt, E.B., 2017)
We now know that these bacteria have been infecting humans for thousands of years. Researchers discovered Bartonella quintana in a 4,000-year-old human tooth in France. (Drancourt M., et al., 2005)
Today, at least 40 different species of Bartonella have been identified.About half of them are known to cause symptoms in humans or animals.
Bartonella is a stealth pathogen
At a recent conference, Dr. Ed Breitschwerdt, DVM, a leading expert in the field, explained how Bartonella can invade and “literally affect every system in the body.” This includes the: cutaneous, muscular, skeletal, endocrine, cardiovascular and nervous systems.
He reviewed several recent studies implicating Bartonella infection in the brain in relation to several neuropsychiatric and autoimmune manifestations.
Dr. Breitschwerdt said these bacteria are extremely difficult to find in humans because they are slow growing and can hide within cells.
Breitschwerdt explained how Bartonella, which are intracellular bacteria, have the ability to:
Invade red blood cells, wall themselves off, and hide from the immune system (immune evasion)
Migrate into the nervous system via macrophages (Trojan horse)
Penetrate the blood brain barrier via endothelial cells and pericytes
Persist within the brain via microglial cells.
Considering the number of different species and different methods of contracting Bartonella, Dr. Breitschwerdt ponders, “Is Bartonellosis a modern-day hidden epidemic?” (Breitschwerdt E.B., 2014)
Symptoms of Bartonellosis
The symptoms of bartonellosis can range from mild to life-threatening, depending on the Bartonella species and the health of those infected. Furthermore, a growing body of evidence links Bartonella to neuropsychological symptoms.
The most commonly reported neurological symptoms include sleep disorders, mental confusion, memory loss, brain fog, irritability, rage, anxiety, panic attacks, depression, migraines, tremors, hallucinations, psychosis and postural orthostatic tachycardia (POTS).
Additional symptoms common to bartonellosis are swollen lymph nodes (especially around the head, neck and arm pits), bone pain (especially shins), pain in the soles of the feet, low grade fever in the morning, night sweats, tender nodules along the extremities, gastrointestinal pain, and skin markings (striae) that resemble stretch marks.
How a stealth pathogen may prolong your chronic illness.
In individuals with strong immune systems, Bartonella infection is often mild or asymptomatic. However, in those with an impaired immune system, Bartonella can wreak havoc on the body.
In fact, Bartonella henselae was discovered in the 1990s during the AIDS epidemic. Because the HIV virus causes an acquired immune deficiency, these patients were extremely susceptible to new infections and reactivation of latent infections. In this patient population, Bartonella caused a distinctive skin lesion called bacillary angiomatosis (BA), and a type of liver disease called peliosis hepatis. (Breitschwerdt, E.B., 2017)
Advanced, disseminated disease is more likely to occur in immunocompromised patients or those taking immunosuppressive drugs. Without proper treatment, the infection can spread systemically throughout the body. The result is sometimes fatal.
When the co-infection becomes the main infection
Data from multiple animal studies shows that Borrelia burgdorferi suppresses the immune system. (Buffen K, et al., 2016; Tracy KE, Baumgarth N., 2017)
This makes me wonder. How many people with chronic Lyme disease had a latent Bartonella infection that was re-activated when their immune system became impaired?
I believe this was the case with my daughter. We live on a farm with lots of animals, including cats. Veterinarians, cat owners, and people who live or work on farms are at increased risk for Bartonella.
It wasn’t until my child became deathly ill after contracting Ehrlichia chaffeensis that her Bartonella symptoms began. The symptoms that stood out were the constant migraine/headache, memory loss, bone pain, painful soles of feet, relapsing fever, insomnia, nighttime hallucinations that made everything look like Whoville, POTS, skin marks (striae) that resembled stretch marks, swollen lymph nodes, and an immune system so impaired it led to a temporary misdiagnosis of HIV— a horrific experience for all of us!
Diagnosis & Treatment
Because Bartonella may hide inside of cells and only emerge periodically, you may need to test multiple times to find a confirmatory diagnosis. And in patients who are immunocompromised, the test may not turn positive until after treatment has begun.
Research led by Ricardo Maggi, Ed Breitschwerdt and colleagues has led to the development of a new digital PCR that is much more sensitive to Bartonella. Even still, Dr. Maggi recommends running multiple types of tests (IFA serology, PCR, culture, and microscopy).
According to Dr. Joseph Burrascano, one should consider bartonellosis when symptoms persist after treatment for Lyme disease. Especially when the neurological symptoms are out of proportion to the common symptoms of disseminated Lyme disease.
Just as with Lyme disease, the longer Bartonella goes untreated, the more difficult it is to treat. Furthermore, the standard treatment for Lyme (doxycycline) is ineffective against Bart. As Dr. Breitschwerdt famously said, “You cannot float humans or horses in enough doxycycline to kill this bacteria.”
According to the CDC: “A number of antibiotics are effective against Bartonella infections, including azithromycin, penicillins, tetracyclines, cephalosporins, aminoglycosides, and macrolides. More than one antibiotic is often used. Consult with an expert in infectious diseases regarding treatment options.”
Dr. Burrascano says, treating Bartonella-like organisms “can be difficult, as drug resistance can rapidly develop to macrolides and fluoroquinolones when used as a single agent and solo courses of tetracyclines are ineffective.”
Moving forward
In 2021, a new Bartonella Research Consortium was formed with a $4.8 million grant from The Steven & Alexandra Cohen Foundation. The consortium includes Ed Breitschwerdt and Ricardo Maggi of North Carolina State University, Monica Embers of Tulane University, and Timothy Haystead of Duke University, who is continuing the work of the late Dr. Neal Spector.
The team is actively working towards creating a targeted treatment for bartonellosis and quickly getting the drug to the marketplace for use in both animals and humans.
It’s time medicine moves beyond the one-pathogen-one-disease model. Let’s face it, ticks are full of toxic soup. Because each pathogen interacts with the host in unique ways, extensive research is needed to understand all factors surrounding co-infections and Lyme disease. (Moutailler S, et al., 2016)
Understanding the complex nature of these pathogens, how they impact the immune system, and how other bacterial and viral factors shape illness, will be key in improving public health. (Cheslock, M. A., & Embers, M. E., 2019)
It’s time for the CDC, NIH, HHS, the Tick-Borne Disease Working Group and other researchers to start looking deeper into the prevalence of Bartonella infections--not just in patients with Lyme disease but in all patients with poorly-defined chronic illnesses.
Resources:
More information about testing/diagnosis of Bartonellosis see:
Galaxy: From Cat Scratch Disease to Bartonellosis
IGeneX: Bartonella for clinicians
Lyme Resource Center: Bartonella in Chronic Infection, Dr. Maggi
Free Bartonella CME Course:
Invisible International: Neurological manifestations of Bartonella
References:
Centers for Disease Control and Prevention (CDC) Bartonella Infection
Recap of the TBDWG Meeting Feb 20 - March 1, 2022:
Day 1 https://www.lymedisease.org/tbdwg-feb28-live-tweets/,
Day 2 https://www.lymedisease.org/2nd-day-summary-tbdwg/
Breitschwerdt E.B., (2014) Bartonellosis: One Health Perspectives for an Emerging Infectious Disease, ILAR Journal, 55 (1) 2014, 46–58. https://doi.org/10.1093/ilar/ilu015
Breitschwerdt, E.B. (2017) Bartonellosis, one health and all creatures great and small. Vet. Dermatol. 2017, 28, 96-e21. doi: 10.1111/vde.12413.
Buffen K, Oosting M, Li Y, Kanneganti TD, Netea MG, Joosten LA. (2016) Autophagy suppresses host adaptive immune responses toward Borrelia burgdorferi. J Leukoc Biol. 100(3):589-98. doi: 10.1189/jlb.4A0715-331R.
Cheslock, M. A., & Embers, M. E. (2019). Human Bartonellosis: An Underappreciated Public Health Problem?. Tropical medicine and infectious disease, 4(2): 69. https://doi.org/10.3390/tropicalmed4020069
Coutte L, Botkin DJ, Gao L, Norris SJ. (2009) Detailed analysis of sequence changes occurring during vlsE antigenic variation in the mouse model of Borrelia burgdorferi infection. PLoS Pathog. 5(2):e1000293. doi: 10.1371/journal.ppat.1000293.
Drancourt M., Tran-Hung, L., Courtin J., de Lumley H., Raoult D., (2005) Bartonella quintana in a 4000-Year-Old Human Tooth, The Journal of Infectious Diseases, 191(4): 607–611. https://doi.org/10.1086/427041
Johnson, L., Wilcox, S., Mankoff, J. and Stricker, RB. (2014) Severity of Chronic Lyme Disease Compared to Other Chronic Conditions: A Quality of Life Survey. PeerJ, DOI 10.7717/peerj.322. (Open access.)
Maggi RG, Balakrishnan N, Bradley JM, Breitschwerdt EB. (2015) Infection with Bartonella henselae in a Danish family. J Clin Microbiol. 53(5):1556-61. doi: 10.1128/JCM.02974-14.
Moutailler S, Valiente Moro C, Vaumourin E, Michelet L, Tran FH, Devillers E, Cosson JF, Gasqui P, Van VT, Mavingui P, Vourc'h G, Vayssier-Taussat M. (2016) Co-infection of Ticks: The Rule Rather Than the Exception. PLoS Negl Trop Dis. 17;10(3):e0004539. doi: 10.1371/journal.pntd.0004539.
Reis C, Cote M, Le Rhun D, Lecuelle B, Levin ML, Vayssier-Taussat M, Bonnet SI. (2011) Vector competence of the tick Ixodes ricinus for transmission of Bartonella birtlesii. PLoS Negl Trop Dis. doi: 10.1371/journal.pntd.0001186
Sperling J, Middelveen M, Klein D, Sperling F. (2012) Evolving perspectives on lyme borreliosis in Canada. Open Neurol J. 6:94-103. doi: 10.2174/1874205X01206010094.
Tracy KE, Baumgarth N. (2017) Borrelia burgdorferi Manipulates Innate and Adaptive Immunity to Establish Persistence in Rodent Reservoir Hosts. Front Immunol. 20(8):116. doi: 10.3389/fimmu.2017.00116.
Lori Miller
Burlington, North Carolina
My name is Lori Miller. I live in North Carolina. I am writing to BEG you to educate medical professionals about Alpha Gal Syndrome.
I was diagnosed five years ago after an anaphylactic reaction that sent me to the hospital with swelling lips and throat. The doctors there helped me but did not know what had caused it. They sent me to an allergist who tested for Alpha Gal Syndrome. This professional was so uneducated on the disease that he told me to just avoid red meat. I had to research and learn all on my own. I had to find other people with the disease to lead and educate me on how to best live with this disease. No medical professional, even Scott Commins, ever told me it would be best to avoid ALL mammalian products not just meat.
I have had to advocate for myself, pay out of pocket to see professionals that can treat me outside of the western medicine box. I have to pay extra for food and medicine that will prevent reactions. I have had to try to educate medical professionals on the depth and breadth of this disease.
Epi Pens are too expensive.
Recently, I was scheduled for a routine colonoscopy. The professionals did not help me facilitate conversations about safe preps and meds with those who would be doing my procedure. They refused to let me speak to anyone until the day of the procedure. I ended up canceling that important procedure because of the uneducated medical professionals that don't know about nor understand Alpha Gal Syndrome. I am hoping the next GI doctor I see knows.
Most of us patients are having to look up information to share with our medical providers. This absolutely should not be. What would we do in an emergency when we were not cognizant enough to self advocate.
Food labels need to be marked with correct information and labeled with each and every ingredient and its origin. We could DIE for mislabeled foods.
We need a voice. We need to be heard. We need all medical professionals to be trained about Alpha Gal Syndrome.
Please help us! Please alot funds and policy that will enable us to have the care we need by trained professionals including pharmacists.
Please help us get ALL foods labeled properly.
Please educate the public so we can eat and not fear for our lives.
Thank you so much!
Lorrie Yeschick
Grand Rapids, Minnesota
I’ve been dealing with chronic Lyme for years. There are some serious issues in getting diagnosed in this country. The standard western blot test often comes back negative - mine did. I did a test with Vibrant Labs with a multiple test panel and 2 of the 3 showed multiple Lyme and related infections. Once the standard western test was negative.
There is no doubt I have Lyme - after being treated (multiple times) there is always improvement. When I first sought my practitioner, I could barely walk up stairs without assistance I was so crippled up. Our medical facilities need to expand what tests they use and integration with Lyme specialists. There are people that spend an extraordinary amount of time keeping up with advances in Lyme treatment world wide. The average medical practitioner does not do this and Lyme diagnoses becomes a guessing game and/or elimination game.
There are also a lot of off label medicines being successfully used to treat Lyme. The problem is many are compound drugs that insurance refuses to cover. My Naltrexone and Methlyene Blue are two examples. I am fortunate enough that I am able to pay out of pocket for them, but it’s really not right to exclude drugs that are helpful. Long term it will save money by improving patient help, rather than disallow coverage and see patients get increasingly worse.
Long term or chronic Lyme often leads to additional medical issues - fibromyalgia, SIBO, etc. compounding the patient issues and making misdiagnoses more common, and patients suffering longer term and sometime indefinitely. We simply need to do better.
Monica White
President/Co-founder
Colorado Tick-Borne Disease Awareness Association
Salida, Colorado
Dear TBDWG members,
I have submitted comments to the TBDWG members regularly throughout this process on behalf of myself, my family, and my community. I participated as a subcommittee member for the TBDWG for both the 2018 and 2020 reports to Congress. Formerly a fully functioning professional wildlife biologist working for the US Forest Service, the work I performed for the subcommittees took me months to recover from after each effort. I have again relapsed with multiple tick-borne infections after a period of no treatment. And again, with positive lab results in hand, I was met with dismissal from mainstream medicine.
Relapse means that persistence of disease is a real and present danger for patients that suffer from Lyme and other tick-borne diseases….patients that don’t get early and accurate diagnosis and adequate treatment; patients that fail the currently promoted treatment of the single antibiotic therapy, doxycycline; patients that have co-infections that get overlooked; and patients that for other unknown reasons, do not respond to available therapies. As I have stated before, “Patient’s needs must be the priority of the working group for this final phase of the panel!”
I am president & cofounder of Colorado Tick-Borne Disease Awareness Association. I am also a patient with chronic Lyme/other tick-borne coinfections and conditions. I live with chronic Lyme disease and multiple co-infections that were not diagnosed early. I am functional only with repeated courses of combined antibiotic/antimicrobial therapies and great support to my immune system. I relapse in the absence of treatment.
I have been caretaker for children who acquired Lyme and co-infections congenitally, both who have suffered multiple relapses of disease; and a husband that remains in remission from chronic Lyme disease and co-infection after his first extended treatment course. We have all responded differently to different therapies. The resources available for patients have been and continue to be inadequate for decades, and for too many patients care is inaccessible.
Patients and advocates should not have to fight as hard as we have for as long as we have for government funded research to begin to get to the resources patients desperately need…reliable direct diagnostics and curative treatments!
Individuals, families, our children have been losing EVERYTHING for DECADES due to the lack of attention to the seriousness and the debilitation that Lyme and the multiple co-infections is having on people that are infected. This suffering has been met with ignorance, denial, ego, and lack of humanity for too long.
No one should suffer the way I have suffered…the way my children have suffered… and the way that the patients I share a voice for have suffered.
There is no excuse for patients having to spend years seeking proper diagnosis and treatment, while suffering crippling physical health, mental health, and financial burdens, loss of careers, and relationship stresses beyond what many families can endure. Growing numbers of children are newly infected each year. Maternal-fetal transmission of many TBDs is a fact, but research is lacking on how to best diagnose and treat before irreparable damage has occurred.
I again thank each of you for the work and time on the TBDWG panel and your subcommittee members. I know firsthand the efforts that are being made by so many of you. Now is the time for action. I implore you to prioritize the need for reliable direct tick-borne disease testing, clinical trials for curative treatments, physician education, and effective prevention tools that are critical to the patient population, especially the chronic disease population.
And finally, I urge this panel to address these well identified gaps in the science and carefully consider directions and recommendations to Congress that provide the greatest impacts to the chronic TBD patient population. This must be the priority as this TBDWG finalizes the report.
Please review my story. See the face that goes with the story. Mine is one of just countless sufferers. https://www.lymedisease.org/monica-white-tbdwg-comments/
Renee Riley
Springfield, Missouri
To: TBDWG
Re: Alpha Gal Syndrome Statement
I am successfully controlling my Alpha Gal reactions by complete elimination of mammal products from my food, personal care, and home. I am unable to use our city water and use distilled water for cooking. I eat a very limited diet. I use allergy meds daily and have avoided an anaphylactic reaction for several months.
So, I am successful. How is that success working out?
I have not been to a restaurant for over 4 years
I am very limited in my travels, only going to select locations to avoid exposure
I cannot hold a baby because baby care products are so full of mammal
Salt based pools seem to be ok, but the sun can cause a reaction
Local rivers and streams are off limits because of the potential for nearby cattle
I have to stay in the house if neighbors are cooking in their yards
I warn all students in my classroom that no food is allowed, and their hair care or other personal items may cause me to react – don’t take it personal!
I have to use an air purifier, personal air purifier, and N95 mask to survive my in person class
I cannot tolerate the perfumes used by most hotels
It is a stressful, scary time every time I get my normal prescriptions filled
My husband has to do all of our shopping
Why am I so cautious?
Nearly two weeks of ongoing reactions from eating safe food in a restaurant where others were eating mammal. These reactions are probably anaphylactic, but I am more afraid of medical care than trying to suffer through it on the bathroom floor.
Requiring an emergency inhaler (for the asthmatic response) two hours after visiting my sister. There was a cow.
Vomiting as I walked, trying to see the Grand Canyon (2019). The mule deer won and my husband took me back to the hotel. I lost consciousness for a few hours (we had to ask for late checkout), then slowly recovered in the car as we traveled to Las Vegas. Vegas is awesome – no mammals there!
Vomiting on the girl with the crazy perfume who would not get out of my way. She dropped my class.
Nearly losing consciousness at work because of the experiments in the science department(2018). The co-worker that rescued me took me home, even though security was demanding an ambulance. I convinced her they would kill me in an ambulance, so they let her take me home. She drove my car and a student followed to take her back to campus.
Crawling from my car to the house because I was so dizzy. Don’t go to pet stores.
These are just a few of the items that affect the “long-haul” Alpha Gal Syndrome sufferer.
Please continue to support research into Alpha Gal Syndrome and search for a cure.
Dorothy Leland
President, LymeDisease.org
The following is from my blog. TOUCHED BY LYME, on the website of LymeDisease.org. I posted it on March 4, 2022, after the last Working Group meeting.
TOUCHED BY LYME: Highs and lows at TBD Working Group meetings
The federal Tick-Borne Disease Working Group’s recent online meetings gave reasons for Lyme advocates to be both optimistic and pessimistic about the panel’s activities in the year ahead.
First, some optimism
(1.) The nine advocates who gave public comment did an excellent job. Particularly forceful was former fighter pilot Nicole Malachowski. She had to retire from the Air Force due to long unrecognized and ineffectively treated tick-borne disease.
(2.) Almost all the subcommittee reports provided thoughtful, cogent insight into their subject areas. And in most instances, panelists responded by respectfully asking intelligent questions.
(3.) One intriguing presentation summarized more than 1300 written comments delivered to the panel since it started in 2017. Messages were analyzed for content, put into categories (such as patient experience, ethics, resources), and further classified by theme (such as patient feeling disregarded, diagnostic criteria, misdiagnosis by geography, mental health). It was an effective way to showcase the opinions and concerns of varied members of the Lyme community. Bravo to HHS staffer Lauren Overman and the subcommittee for a job well done.
Now, some pessimism
The subcommittee charged with exploring the hot-button question of how best to treat Lyme disease is definitely wedded to the IDSA Lyme guidelines’ view of the question (ie, no long-term antibiotics for Lyme disease, ever.)
The stance isn’t surprising, given the two panelists who co-chair the subcommittee and chose its members: The IDSA’s Dr. Sunil Sood, a co-author of those problematic guidelines, and Dennis Dixon, of the National Institutes of Health. The NIH has long endorsed the IDSA’s view of chronic Lyme.
(If you need reminding, the IDSA guidelines make it almost impossible for many people with Lyme to get properly diagnosed or effectively treated. Especially if you’ve been sick for a long time. And even more so if you live outside of the handful of states recognized as Lyme-endemic by the CDC.)
Sood and Dixon’s presentation to the Working Group appeared to start from the premise that long-term antibiotics will never help Lyme patients get well—period. As Sood put it: “It’s been proven in multiple trials that prolonged antimicrobials do not provide the benefit we need in these patients.”
At the first opportunity, panelist Dr. Elizabeth Maloney politely but firmly took issue with that statement. She knew precisely which studies they were talking about and disputed how they characterized the findings.
In fact, she pointed out, a significant number of participants showed sustained improvement in terms of fatigue—no small matter for Lyme patients. She also noted that these studies had small sample sizes, making it hard to generalize their findings to the wider population of Lyme patients.
Sood’s remarks also deftly ignored the experience of many Lyme patients and their treating doctors, where long-term antibiotics have indeed been helpful. (See: Are antibiotics useful for treating chronic Lyme disease patients? MyLymeData study provides some answers. https:// www. lymedisease.org/antibiotics-for-lyme-disease )
Back to optimism
On the second day of meetings, Dr. Maloney and Captain Rebecca Bunnell presented their report for the Access to Care and Education subcommittee.
They focused their discussion on a single priority: “To ensure health equity for patients with tick-borne diseases so that they may reach their full health potential unburdened by structural and societal constraints.”
Dr. Maloney then walked us through what “health equity” would mean for Lyme patients and how that might be accomplished. In summary, she stated:
Health disparities fall on the marginalized and powerless. Although health inequities are typically associated with race, ethnicity, and sexual orientation, they also rise in the context of marginalized or stigmatized healthcare conditions—such as mental illness, HIV/AIDS, substance abuse, and Lyme disease. For that reason, achieving health equity is a matter of fairness and justice.
Melissa Wright
Racial disparities in diagnosing and treating Lyme disease
by Melissa Wright, MBA, Director of Patient Engagement & Outreach for LymeDisease.org
Racial disparities in healthcare. Health inequity. Social determinants of health. Socioeconomic status. Systemic discrimination. Representation. Equity and inclusion.
To some, these may seem like buzz words, perhaps repeated a lot in recent years. But for people of color, these terms signify that they may not be able to obtain essential medical care.
Although I don’t have Lyme disease myself, as a Black American female, I know firsthand about the barriers faced by people of color while seeking appropriate healthcare. We must advocate for ourselves in a space that often does not welcome people who look like us.
These problems become compounded when the disease itself is marginalized, like Lyme disease. Navigating the diagnostic maze and finding care may be beyond the grasp of underrepresented populations.
Racism and health- In February 2022, the journal Health Affairs dedicated an entire issue to the topic of racism and health. As described in the article Systemic and Structural Racism: Definitions, Examples, Health Damages, and Approaches to Dismantling:
“Racism is not always conscious, explicit, or readily visible—often it is systemic and structural. Systemic and structural forms of racism are pervasively and deeply embedded in systems, laws, written or unwritten policies, and entrenched practices and beliefs that produce, condone, and perpetuate widespread unfair treatment and oppression of people of color, with adverse health consequences.” (Braverman et al 2022).
The COVID-19 pandemic has amplified the gross health inequities experienced by people of color in the United States. Alarmingly, through most of the pandemic, infection rates and deaths of people of color have been much higher than those of their white counterparts.
Such healthcare disparities are not new, but COVID-19 has made them more visible. Such inequalities exist for many marginalized conditions, including Lyme disease.
For example, how are people of color represented in Lyme disease CDC surveillance statistics? A starting point might be to compare reported surveillance cases of Lyme disease by race with census population statistics.
At the outset, I should point out that it is not easy to find or digest surveillance data about the incidence of Lyme disease in people of color.
Distinctions between “race” and “ethnicity”- Race and ethnicity are considered two separate and distinct concepts by the federal system. In the case of Lyme disease, race and ethnicity are contained in unrelated CDC reports that may not be easily combined.
In a USA Today article about the federal census, reporter Rick Rouan explains it like this: “Ethnicity is strictly related to Hispanic, Latino or Spanish origin… But an individual who is Hispanic, Latino or Spanish can belong to any of the government’s categories for race as well. Race is broken into five broad categories [American Indian or Alaska native, Asian, Black or African American, Native Hawaiian or other Pacific Islander, and White] based on a person’s ‘origins.’”
Historically, there are many cultural and political reasons for race and ethnicity being treated differently in government statistics, Rouan continues. For example, being counted in national statistics is important, but that identification might increase the risk of deportation or have other political consequences for some populations.
Because of this, the census asks one question about race (which does not include Hispanic or Latino as possible answers) and another for ethnicity.
In the 2010 census, many Hispanics identified on the first question as white or other, while only 17% answered the question in the census regarding ethnicity.
CDC’s separate reports on race and ethnicity- In contrast, the CDC collects Lyme data on race and ethnicity in separate reports, making it difficult to see at a glance how each affects disease incidence. Still, we know that healthcare inequities often arise based on skin color.
The table below reflects the data provided in one report on race: white, black, Asian, and other. I have inserted the Hispanic/Latino information that was provided in another report. In both instances, the proportion of people of color included in surveillance reports is minuscule compared to the Lyme case numbers for white/Caucasian categories (Schwartz et al 2017).
*Pulled from 2016 CDC report on ethnicity (Nelson et al 2016). The CDC surveillance case numbers in the table exceed 100% because we have added the 3.7% from the Nelson report. This 3.7% is likely included in other race categories (e.g., white or other).
While combining information from two reports gives us a better picture of the problem, the Hispanic percentage is not precise because that category may be double counted in the white population.
False impression of low Lyme risk- You will notice that only 10% of the CDC confirmed and probable Lyme cases reported are from a minority population, despite non-whites making up over 40% of the U.S. population. The surveillance data gives the false impression that people of color are at lower risk of contracting Lyme disease than other populations.
Because the census question excluded Hispanic/Latino as an option, and because many Hispanics choose to identify as White/Caucasian, exact proportions of this population are hard to determine.
According to a 2016 CDC study, 39.7% of Lyme cases reported to the CDC between 2000-2013 included information about ethnicity. Of those, 3.7% identified as Hispanic (Nelson et al 2016). This disparity is striking because, as the CDC points out in the same study, Hispanics are at greater risk of contracting Lyme disease due to occupational exposure.
The study, based on the CDC’s national surveillance process, gives the following explanation for that: “Outdoor workers in [Lyme]-endemic areas have increased odds of occupational exposure to ticks. In the United States, Hispanics comprise 43.6% of grounds maintenance workers… potentially placing this population at greater risk for [Lyme disease] from occupational exposure” (Nelson et al 2016).
Unfortunately, this high risk of exposure of Hispanics is not reflected in the CDC surveillance numbers. The CDC identifies many reasons the surveillance numbers may underreport the true incidence among Hispanics, including “Inadequate healthcare access, language barriers, and lack of [Lyme disease] awareness could cause both underdiagnosis and delays in diagnosis in the Hispanic population” (Nelson et al 2016).
Systemic failure leading to racial disparities in healthcare- This is an example of systemic failure, which could also include the following:
- Lack of awareness among minority populations about their risk of Lyme disease.
- Patients’ inability or reluctance to obtain medical care
- Doctors may not know that some people of color have a higher risk profile for tick-borne illness.
- Doctors may not know how to identify Lyme rashes on dark skin.
- Doctors may not submit Lyme disease surveillance reports to the CDC.
- Delayed diagnosis or failure to diagnose.
Similar systemic failures occur in the surveillance reporting for the Black population, representing 12.4% of the general US population but only 1.6% of reported Lyme surveillance cases.
Lyme rashes look different on dark skin:
The problem is further compounded by the fact that the erythema migrans (EM) rash frequently seen in Lyme disease is more difficult to identify on dark skin. LaShyra Nolen, a Harvard medical student, notes in the New England Journal of Medicine, “… Black people are less likely to receive early diagnosis of Lyme disease because many medical students aren’t taught to recognize the characteristic ‘bull’s-eye rash’ on dark skin. This can lead to delayed treatment and medical complications from late detection of the disease which affects Black people disproportionately.” These same considerations should apply to any person with pigmented skin.
Unless images of EM rashes on dark skin are specifically included in training materials and medical textbooks, health care providers will continue to overlook this early sign of Lyme disease in non-white people.
In an interview with CNN, Ni-Ka Ford, the diversity committee chair for the Association of Medical Illustrators, said, “For decades, peer-reviewed academic publications have used photographs and images that inadequately portray the diversity in demographics of patients affected by particular diseases… these inequities in medical reporting can have lasting downstream effects on the accessibility and provision of healthcare.”
It’s not all about Lyme rashes- But merely filling medical training manuals with pictures of Lyme rashes on dark skin won’t solve the problem. The overarching issues are more nuanced.
What hasn’t been discussed is how people of color are impacted by limited access to medical care, socioeconomic status, systemic discrimination in healthcare, and even the general lack of public awareness of Lyme disease and its symptoms.
Physicians and the community rely on CDC statistics to alert them to the risk of contracting the disease. Underrepresenting the true incidence of Lyme disease in these populations is a disservice to everybody.
The CDC must alert black and brown communities to their risk of contracting Lyme disease. Targeted messages addressing these communities could make them more likely to take preventative measures and seek medical care if they suspect they might have tick-borne illness.
A good example of targeted messaging is an initiative entitled Survivorship Today, launched by the pharmaceutical company Bristol Myers Squibb.
Aimed at increasing awareness in at-risk communities, the program shares stories of people of color with cancer. Short video public service announcements with real patients of all racial/ethnic backgrounds discuss their experiences to let people of color know that cancer can knock on anyone’s door—including theirs.
A similar campaign is critically needed to make people of color aware of their risk of contracting Lyme disease.
References
“Lyme Disease Charts and Figures: Most Recent Year.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 29 Apr. 2021, https://www.cdc.gov/lyme/datasurveillance/charts-figures-recent.html.
Schwartz AM, Hinckley AF, Mead PS, Hook SA, Kugeler KJ. Surveillance for Lyme Disease – United States, 2008-2015. MMWR Surveill Summ 2017; 66 (No. SS-22):1-12. DOI: http://dx.doi.org/10.15585/mmwr.ss6622a1
Demby, Gene. (2014, June 16). On the Census, Who Checks ‘Hispanic,’ Who Checks ‘White,’ And Why. Retrieved April 8, 2022, from https://www.npr.org/sections/codeswitch/2014/06/16/321819185/on-the-census-who-checks-hispanic-who-checks-white-and-why?ft=3&f=321819185?ft=3&f=321819185
Quarshie, M., & Slack, D. (2021, August 13). Census: US sees unprecedented multiracial growth, decline in the white population for first time in history. Retrieved January 18, 2022, from https://www.usatoday.com/story/news/politics/2021/08/12/how-2020-census-change-how-we-look-america-what-expect/5493043001/
Jones, N., Marks, R., Ramirez, R., Rios-Vargas, M. (2021, August 12). 2020 Census Illuminates Racial and Ethnic Composition of the Country. Retrieved May 11, 2022, from https://www.census.gov/library/stories/2021/08/improved-race-ethnicity-measures-reveal-united-states-population-much-more-multiracial.html
Kaur, Harmeet. (2021, December 9). A viral image of a Black fetus is highlighting the need for diversity in medical illustration. CNN. Retrieved from https://amp.cnn.com/cnn/2021/12/09/health/black-fetus-medical-illustration-diversity-wellness-cec/index.html
Nelson, C. A., Starr, J. A., Kugeler, K. J., & Mead, P. S. (2016). Lyme Disease in Hispanics, United States, 2000-2013. Emerging infectious diseases, 22(3), 522–525. https://doi.org/10.3201/eid2203.151273
Nolen, LaShyra. (2020, June 25). How Medical Education is Missing the Bull’s-eye. Retrieved from https://www.nejm.org/doi/full/10.1056/NEJMp1915891
Nolen, LaShyra. (2022, February 28). Medical Racism is Very Real, and It’s Time to End It. Retrieved from https://www.teenvogue.com/story/medical-racism-is-very-real-and-its-time-to-end-it
Racism & Health. (February 2022). Health Affairs. Retrieved from https://www.healthaffairs.org/toc/hlthaff/41/2
Braverman P., Arkin E., Proctor D., Kauh T., and Holm N. (February 2022). Systemic And Structural Racism: Definitions, Examples, Health Damages, And Approaches to Dismantling https://doi.org/10.1377/hlthaff.2021.01394
Racial and Ethnic Diversity in the United States: 2010 Census and 2020 Census. (2021, August 12). United States Census Bureau. Retrieved from https://www.census.gov/library/visualizations/interactive/racial-and-ethnic-diversity-in-the-united-states-2010-and-2020-census.html
Rouan, R. (2021 August 13). New Census numbers paint picture of race and ethnicity in U.S. But how are those defined? Retrieved June 6, 2022 from https://www.usatoday.com/story/news/politics/2021/08/12/how-census-defines-race-and-ethnicity/5559216001/
