This webpage displays the written comments received by the Tick-Borne Disease Working Group for the June 2019 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.
Anonymous 1
Alpha gal needs more studies. Air borne concerns are serious.
Anonymous 2
Requesting TBDWG quickly resolve some of the issues presented previously.
- Require consumer labeling of pharmaceuticals for mammalian ingredients.
- Task research to study “pathology” of TBD and Alzheimer's/dementia, neurodegenerative disease processes, and cancer, using and expanding direct detection methods.
Anonymous 3
To whom it may concern:
I have had symptoms to mammalian and mammalian by-products since the earliest I can remember 7 years of age. I am now 32 years old. I am consumption, contact, and airborne sensitive.
Symptoms to these exposures can range from hives, skin redness, rashes, restless legs, lower spine/back pains, joint issues, body numbness, chest tightness, blurry vision, increased heart rate, asthmatic breathing, foggy brain, speech issues, feeling faint, blacking out, throwing up, diarrhea, and more.
I have to maintain safe environments everywhere I go. Within our home, at work, grocery store, visiting community, community visiting us, driving down the road, eating out, grocery shopping, leisure activities, doctor office visits, etc.
An example of my most current issue I am facing with airborne exposure. (I can list many more issues we have if needed)
Legally: I am currently in a custody battle. The opposing side knows I do not have much support in keeping me safe with my allergy. One of their claims is that I am mentally unstable due to me thinking I am airborne sensitive to something. This has resulted in my son being returned head to toe in heavy exposure with my allergen - resulting me to have reactions, ER visits, and doctor visits. Contact exposure is happening as well, yet the exposure lingers for days and any time my child is around me the exposure triggers and causes symptoms. I have Commins as my allergist, yet as my lawyer has told me on all things they are accusing me of… he is only one doctor. The lawyer states I need more data and research to back with their claims.
What if this was a child in the middle of this? We have people in our community whose children have been the ones with AG being put in unsafe situations like a custody battle and visitation - all due to the lack of support from medical persons and research.
I only had a short time to email before midnight. I can provide many other issues we are currently struggling with in regards to Airborne Exposure if needed. Commins is doing wonderful things for our community, and research for Airborne would be a HUGE help for our community, keeping us safe, and helping us move forward with potential solutions.
Thanks.
Anonymous 4
Dear Sirs and Madams:
Funds are urgently needed for research on anaphylaxis from airborne exposure. As alpha gal affects more and more people, the effects of airborne exposure to mammalian antigens are life changing and life threatening.
This danger of airborne antigens also has a significant effect on economic impact as people with alpha gal who have fume reactions find it difficult or impossible to travel, run errands, and attend activities such as social and family functions, church or even leave their homes. It is a constant concern of mine and I know others who have suffered an instantaneous and extreme drop in blood pressure upon exposure to the point where they have passed out or collapsed.
I urge you to fund Dr. Scott Commins’ research to document airborne reactions from mammal products.
Thank you.
Sincerely,
Grandmother
My story. I am 48 woman. I have 1 son & a 7 year old grandson. I had a life.
I was bitten by a tick on December 22, 2018. I began hurting in my feet and back horribly. I went to doctor on January 2, 2019 & they ran bloodwork. Doctor said he was going to check for Rocky mountain spotted fever because he had a lady in month before that had it & almost died. Said she was in ICU for a week. My test came back positive for rocky mountain spotted fever. I then developed pneumonia & was coughing up blood clots.
Doctor started me on doxycycline, levofloxacin & rocephin. Dr also gave me a pain shot & Tramadol for the pain. Nothing helped. I am allergic to tylenol, morphine, demerol. Ibuprofen didn't help either. The pain was so bad in my feet that I could barely stand. I was on doxycycline from January 2nd until 1st week of March. Doctor said he thought the reason doxycycline made the pain feel better is because of anti inflammatory properties it has in it & to take advil or ibuprofen.
Two months after being off of doxycycline I had a garage sale and was covered in 2nd degree burns. I was covered & stayed in the shade. Doctor said he thought was because of doxycycline still in my system gave me a steroid shot & sent me on my way. Told me to stay out of sun. 5 days after that visit I broke out in another round of blisters. Days where my back and feet hurt so bad I am in bed most of the time. My grandson never wants to come see me anymore because I am too sick to do anything with him anymore. Daughter in law did a hashtag on Facebook about me having rocky mountain spotted fever saying #butdidyoudie. Other people make fun of me saying things "sorry things are so deadly all the time" "ugh you are just always sick". I begged & called & called & called asking my doctor to send me to a Rheumatologist because I hurt. It took 3 weeks and finally have an appointment for June 12th. I take Epsom salt baths, stay on a strict anti inflammatory diet, and nothing helps with this pain. I have been calling my doctor begging to get in to ask for more blood work to find out what is wrong with me. I have been told that any test they have done are normal and I am fine. Nurse VERY irritated ask me what helped with my pain. I said doxycycline. I am not asking for pain meds as I am allergic to most all of them. She said she would have the doctor call me in a prescription for doxycycline. He did call me in prescription without any blood work or talking me himself. I am sad & hopeless that they don't think necessary to run test until they find out what is wrong with me.
Last month my heart would start racing over 130 for no reason & stay that way for no reason. I went to ER because I thought I was having a heart attack. I was told I wasn't having a heart attack and to follow up with a heart doctor. I did. Ultrasound showed my heart to be okay and wore a heart monitor for 30 days. The heart monitor showed the episodes. Heart doctor said hopefully just a secondary infection to the rocky mountain spotted fever & nothing he could do just hope it goes away & I will be fine.
It is currently Friday on Memorial day weekend. Am waiting on my husband so he can drive me to emergency room so I can beg them to find out why I am in so much pain. My eyes are so dark at bridge of my nose & underneath that at times I look like I have been punched. I look like a sick person. I have broke out in a million red patches all over my body. No one knows why, I am fine they say. I no longer work. I no longer go out and live in the world. I don’t attend graduations. I don't go shopping. I don't travel. I get up in the morning & try my best to stay out of a bed. I make herbal tea. I have people say take lots of garlic. I will. Take lots of turmeric. I will. Drink lots of water. I do. No matter what I do or don't do nothing helps. I then try to take a bath or shower to help pain. I go sit in a chair or go out on porch, anything not to be in the bed. Sometimes I get lucky and make it until 3pm. That is most excellent day if I make it that long!!
My ears have rang so loud since I got rocky mountain spotted fever & still do. Dr looked at them said I had wax build up & cleaned them out and said I am fine. I am not fine. I can not make myself break out in blisters & purple dots. I have not punched myself to have these dark sunk in eyes. I don't bash my feet & back with a hammer to make them feel like I have been hit. I don't make my blood pressure stay low. My doctor has the records. I was doing good if I could keep my blood pressure steady at 80/50. Don't believe me? Pull my medical records. Look at the pictures. See for yourself. My husband [redacted]. He says he understands I have aches & pains BUT does me no good to keep talking about it. So I try not to. He is gone most of the time so I am alone most of the time by myself hurting & eating/drinking/bathing my days away to try & fight my way out of a bed. People don't call or come see me. They don't want to deal that I can't function because I am in pain anymore.
Something is very very wrong with me since that tick bite. I still have it in my freezer in a ziploc bag with the date on it. I pray that a doctor will show up in my life & care & will take that tick & find out what is wrong with me. Is it bartonella? Do I have other nasty bacteria from that tick? What is causing all of this? I don't live a life anymore. All I do is barely exist.
Please give funding & research in tick borne diseases/ illness. Maybe just maybe then a doctor will learn to care & treat.
Grandmother
Newcastle, Oklahoma
Teresa
I am a survivor of long term consequences of untreated Rocky Mountain Spotted Fever. The reason it was untreated is when I presented myself with a 104 fever to a hospital in Kentucky, in 2009. The attending physician did not recognize the symptoms. Did no blood work. Gave me 2 Tylenol, and sent me home. One week later, I went to the nurse practitioner, with 104 temp, who recognized it, and prescribed meds, but she thought we missed the window. We did. I now suffer daily. Internal organs swell, and my joints hurt awful. Difficulty breathing too. There needs to be more education for our physicians, and more funding to research a real cure. It’s probably too late for me. Children are dying, and the medicine still only gives a small chance for the young, sick, and elderly. Please consider new funding, for research, and education.
Thank you.
Lucy Barnes
TO: Tick Borne Disease Working Group
Elephants In The Room- A long-time employee of National Institutes of Health- the mouthpiece for a group of federal employees and IDSA members and their supporters- publicly stated sick Lyme patients, volunteer educators, non-profit support groups/organizations, labs, legislators and those who treat people with the chronic form of Lyme and tick borne diseases are:
QUOTE- "Disorganized, antagonistic, vindictive, back-biting, fratricidal groups, conspiracy nuts, and any number of certified mental patients acting as self-appointed Movement spokespersons.” [NIH] [redacted]
And They All Lived Together In A Little Crooked House- For decades, members of the Lyme community have been relentlessly targeted, stalked, mocked, slandered, harassed, discredited and even physically threatened by some of the people paid to oversee the science and research into Lyme and tick borne diseases. Some have been funded with taxpayers dollars while doing so.
QUOTE- "It’s been a busy week in LymeLand. There must have been some kind of nuthouse furlough recently because three Lymee wackjobs have just dumped a load of nonsense into the Internet, which in all fairness is basically what the 90% Internet is—a digital landfill for the mentally ill, the conspiracy-minded, the juvenile, and the criminal." [NIH]
These egregious statements and actions by a group of federal employees, Lyme grant recipients and others have gone unchecked for over 30 years and continue today.
QUOTE- "Below is a list of conference “faculty” for an upcoming meeting of the ILADS, a group of like-minded quacks preying on people who think they have a chronic, incurable bacteria infection otherwise know to the saner world as Lyme disease. If the roof of the conference room was to fall in, it would put an end to a large amount of quackery in the U.S., save many people from financial ruin, and lessen the workload of numerous state medical licensing boards." [NIH]
QUOTE- "... and these LLMDs and ILADS guys are charlatans and quacks, and are a general threat to the health and wealth of their patients. ... he’s just as delusional as the chronic Lyme activists.” [NIH] [redacted]
QUOTE- "Doctors (and quacks) are in control....right up to the point where they kill, injure or rob someone." [NIH] [redacted]
Senator Blumenthal, while serving as the CT Attorney General, was also targeted. On May 1, 2008, after conducting a lengthy investigation into the 2006 IDSA guideline authors, he reported he uncovered, in part, the following serious Lyme related problems:
QUOTE- "The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion.”
QUOTE- “My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.” [AG Blumenthal]
IDSA panelists were also called out by the AG for basically cheating, lying and chasing away those who don’t ride on the same Lyme train so to speak.
QUOTE- “The IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman [redacted], who held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSA's oversight committee... The IDSA's 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group's position on chronic Lyme disease to achieve "consensus"...” [AG Blumenthal]
QUOTE- “The IDSA portrayed another medical association's Lyme disease guidelines [American Academy of Neurology] as corroborating its own when it knew that the two panels shared several authors, including the chairmen of both groups, and were working on guidelines at the same time. In allowing its panelists to serve on both groups at the same time, IDSA violated its own conflicts of interest policy.” [AG Richard Blumenthal, CT] https://web.archive.org/web/20170319133146/http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284
In retaliation the federal employee attacked officials multiple times. Examples:
QUOTE- “No, I think Blum [Attorney General Richard Blumenthal, CT] has demonstrated that he’s just another crooked pol ... He’s a media-addicted clown who will temporarily pursue any cause for a few minutes of television time. He’s a bad politician and a bad lawyer.” [NIH]
QUOTE- "Congressman Chris Smith (R-NJ) must have a lousy staff. He’s hosting a forum on Lyme disease and other tick-borne infections for his constituents this week." [NIH]
To date, attempts to get someone to address this unacceptable situation has been thwarted by IDSA, CDC and their supporters. For example, IDSA members actively approach anyone they believe might have some clout and feed them biased, self-promoting information (personally and in writing) in an attempt to quash all opposing points of view and scientific conclusions. Example- every Lyme related bill has been fought using two known methods- hand feeding those who might jump on their wagon, and viciously attacking those who don’t.
QUOTE- “So, yes, I think the new Administration, the new congressional committee chairs, the new OSTP staff, science advisors such as former NIH Director Harold Varmus and incoming FDA Administrator Peggy Hamburg are very aware of the “serious conflicts and scientific misstatements” characteristic of Lyme activists and their quack physicians.” [NIH]
QUOTE- "She sounds a lot like the equally agitated, white, blue-collar, unemployed people who show up at tea party rallies to foam at the mouth.” [NIH] [redacted]
The biased, out-of-control federal grantors and benefactors over the years have been so anxious to crush any other points of view they’ve resorted to volunteering their services to government employees in order to do harm to others. [redacted] in Connecticut, for example, in a letter dated 9/14/93, offers advise on how to destroy a Lyme treating doctor’s reputation. Guilty of anything or not, these kinds of actions cost unsuspecting doctors tens of thousands, to millions of dollars in legal fees, with sanctions and the additional losses of their licenses. [redacted], as noted below, gladly shares his expertise- attacking doctors- with the CT Department of Health staff:
QUOTE- “Have one of your staff investigators pose as a patient, complete with vague symptoms and negative Lyme results but insisting she have Lyme Disease. I would be happy to rehearse that investigator.” … “Examine insurance records of some of the major carriers in the state to see if he is a consistent outlier in terms of duration of home intravenous therapy.” … “Examine records of patients treated over the past few years for Lyme Disease to see if they truly fulfill established criteria for Lyme Disease.” [redacted]
There are thousands of examples of public statements made by this group over the years against the Lyme community and its efforts, some supported by federal grants.
QUOTE- “What is it about white, middle-class, college-educated, middle- aged women that compels them to use a common infectious disease as the vehicle for their emotional and psychological problems? Why the endless lies and absurd street theater? Why are the spokespersons and leaders of the Lyme Movement mostly former mental patients, former felons, and belligerent, paranoid egomaniacs?” [NIH] [redacted]
QUOTE- "Maybe this person is a recent immigrant with an imperfect command of written English. Or maybe he/she is just a nut. Probably the latter." [NIH]
QUOTE- "Wow. Marylanders must be the dumbest people in the U.S. So who’s the audience for this pathetic propaganda?” [NIH]
QUOTE- "... do we cheer for the scum-bag personal injury lawyers or for the deluded patients? I had to go with the scum-bag lawyers— after all, it’s not the fault of the lawyers. They’re just acting out their nature like a shark or a mamba or some other dangerous predator.” [NIH]
This small, but vicious vocal group, includes federal employees who have served as their main mouth pieces. Even today they continue to publish these kinds of statements. [redacted] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2870558/
QUOTE- “As a result of such close interactions, many of us have become better acquainted not only with each other, but also with scientists who actually do the research that is funded by grants from the NIH and other government agencies. As Program Officer for NIAID’s Lyme Disease Basic Research Program, I managed the grants and therefore had personal contact and direct interactions with almost every well-known and accomplished scientist doing research on Lyme disease...” [redacted] https://www.aldf.com/pdf/Poughkepse_Journal_Letter_to_the_Editor.pdf
QUOTE- “About 2-3 years before I became Program Officer for the National Institute of Allergy and Infectious Diseases’s (NIAID) Lyme Disease Basic Research Program, the U.S. Congress mandated that NIH establish an NIH Lyme Disease Advisory Panel to facilitate the exchange of information and the development of co-operative interactions between those institutes of the NIH that support clinical studies and basic research on Lyme disease; representatives from the CDC and the FDA also were invited to serve on this panel….”… “Therefore, it should not be surprising to discover that the NIH, CDC, and FDA work closely together on Lyme disease…” [redacted]
While admitting they have been working closely together, he continues to discredit sick patients.
QUOTE- “To characterize such individuals [Lyme patients] as “loonies” might be too kind of a description.”[NIH] https://www.aldf.com/pdf/Poughkepse_Journal_Letter_to_the_Editor.pdf
[redacted]
Sincerely,
Lucy Barnes, Director
Lyme Disease Education and Support Groups of Maryland
The TBDWG rules prohibit having embedded links to supporting information not published on a govt. website. The information/quotes above can be confirmed by outside sites if needed, AND, by way of the federal Energy and Commerce Committee’s website, however, their link is currently broken. Please contact them for an updated link at: [email protected] 21st Century Cures: White Papers and Public Feedback 21st Century Cures: Patients (May 16, 2014) Respondents (Responses 29-32) https://archives-energycommerce.house.gov/cures-whitepapers
[redacted]
Kristina and Michael Bauer
This group has not met its Federal charter of 7 Federal and 7 non Federal appointees this year or last. This violates the Federal charter of this group. Transparency has not been met that was promised in the beginning and the public has lost faith in the TBDWG. Conflicts of interest have turned the efforts of this group into a global laughingstock. They are so deeply rooted across this group that the public takes this group as sham to push another Lyme vaccine. We need to remove everyone with conflicts of interest and then how many appointees would be left standing for the patients?
We have repeatedly called for a Congressional hearing on the mishandling of Lyme and will not stop until we get it. The office of Inspector General will not return calls or emails acknowledging our formal complaints. Advocacy groups are being ignored across the nation while Lyme is formally recognized by the WHO as human torture.
Insurance coverage for patients is a must and is something that IDSA has publicly said they are against from the initial report the TBDWG submitted to Congress. Their new guidelines for Lyme are terrible, yet they are still welcome to this table. This patient group will not stand by and let you elect those who have outwardly been against persistent infection.
[redacted] has missed 34 days of school this year due to extremely high strep and congenital Lyme suppressing his immune system. What has this group done to help patients already sick? We see funding going to the same co-opted individuals putting their pocketbook before dying and desperate patients. How do we move forward with the same co-opted and corrupted groups?
We need to end this controversy over persistence. This is 2019 and it has been proven over and over by researchers such as Lewis, Zhang (and Embers). There are 700 pier reviewed articles at ILADS.org speaking to persistent Lyme infection. This group needs to focus on persistent infection and put the controversy to rest. Anyone denying persistent infection needs to be banned from participating in this group.
AMA approved Continuing Medical Education credits (CME’s) are available in Lyme at ILADEF.org.
Kristina and Michael Bauer
Texas Lyme Alliance
Jennifer A. Burton
Once again I’d like to thank the Tick Borne Disease Working Group for allowing in-person and written comments from the public. In the past I have written and spoken to this group regarding Alpha Gal Syndrome (AGS) and the many GAPS that affect our daily lives, what we face and suggested changes to address some of those concerns.
I was diagnosed in April 2017 with Alpha-Gal Syndrome after 5 to 6 months of battling the common escalating symptoms of AGS—extreme fatigue, joint pain, rashes, vomiting, diarrhea, GI distress and bloating, angioedema, urticaria, and four anaphylactic episodes (two nearly fatal). On 2/12/18 I was given the opportunity to speak to this committee regarding serious GAPS in the medical, pharmaceutical, emergency services, and food industries not only for those of us with AGS, but for many afflicted by the 20+ various tick-borne illnesses. GAPS that include: Better education and resources for 1) the medical industry, 2) Physicians, 3) First Responders, Paramedics, and Emergency Room personnel, 4) Pharmacists and 5) Accurate and FULL disclosure of all mammalian ingredients on food labeling. I have also emailed written statements for the 5/15/18, 7/24/18 and 12/03/18 meetings. In those statements I wrote in more detail about the GAPS I’d spoken about in the 2/12/18 meeting. This time, I’d like to cite new research information and issues that concern me regarding AGS and all tick borne diseases and illnesses.
On May 3, 2019 an article: Collaborative-Tick Surveillance Works: An Academic and Government Partnership for Tick Surveillance in the Southeastern United States (Acari: Ixodidae) was released in the Journal of Medical Entomology1 stating, “UT (Univ of Tennessee) identified all submitted ticks to species and life stage, and screenedAmblyomma americanum (Lone Star tick)(L.) forEhrlichiabacteria using a nested-PCR assay. From the 198 returned vials, 1,180 ticks were submitted, including ;A. americanum (Lone Star tick)(90.51%; 202 larvae, 503 nymphs, and 363 adults),Dermacentor variabilis (American Dog tick) Say (7.12%; 1 nymph, 83 adults),Ixodes scapularis (Blacklegged (deer) tick) (Say) (1.61%; 19 adults), Amblyomma maculatum (Gulf Coast tick) Koch (0.59%; 1 nymph, 6 adults), and Amblyomma cajennense (Cayenne tick) (Fabricius) (0.17%; 1 nymph, 1 adult). (additions in red are my clarifications) Did you take notice that of the 1,180 ticks submitted the Lone Star tick represented 90.5%?
What do we know about the Lone Star tick besides it can cause Tick Paralysis, Alpha Gal Syndrome and carries Ehrlichiosis, Tularemia, STARI, Rickettsia(s) (RMSF), and Bartonella? Unlike other ticks that primarily quest on their own, the Lone Star is highly aggressive and extremely hardy. “Compared to blacklegged ticks, lone stars are much more aggressive. Blacklegged ticks behave in predictable ways — they hang out in leafy undergrowth, arms and legs outstretched in case a hapless animal or human passes by. According to Ellen Stromdahl, a researcher with the United States Army Public Health Center, blackleggeds are relatively small and weak.
Lone stars, on the other hand, hunt in packs and travel at surprising speeds, emerging from the leaf litter like a swarm of thirsty, galloping lentils.
“If you sit in the middle of the woods breathing out CO2, you’ll get a fan club of lone stars pretty quickly,” Hickling says.
On top of lone stars’ rapacious mentality, Old Dominion’s Gaff says that after conducting a series of experiments, the bugs “seem to be invincible.”
She’s tried freezing them — but they came crawling out of the freezer after seven days on ice. Next, she tried drowning them, figuring that sea-level rise on Virginia’s coast could end up doing humanity a favor by drowning out tick populations. Her team submerged lone stars in salt, fresh, and brackish water. Every single tick lasted for at least 30 days in each condition — the last lone star died after 74 days.
It only takes one bite from a lone star tick for an unsuspecting victim to develop a meat allergy that can last months, years, or even an entire lifetime.” 2
“To make matters worse, Holly Gaff, an expert on ticks and tick-borne diseases, has been studying the lone star tick and says that the ticks "seem to be invincible." 3
Needless to say, the Lone Star is a formidable foe. Along with it literally hunting in packs, surviving harsher winter temperatures and floods waters, new data suggests that Lone Stars can induce an AGS immune response without requiring a blood meal. The new research is quite disturbing. At the February 2019 annual AAAAI conference, Dr. Commins released, “These results suggest that more tick bites than we initially suspected could pose a risk for developing red meat allergy. Our original hypothesis was that humans developed the allergy after being exposed to alpha-gal through a tick that had fed on a deer, dog or other small mammal that has alpha-gal. This new data suggests that ticks can induce this immune response without requiring the blood meal, which likely means the risk of each bite potentially leading to the allergy is higher than we anticipated.”4 Now we know that when the female lays 3,000-5,000 eggs, the larvae will hatch already carrying Alpha Gal in their saliva and start the hunt. And, that’s not all, “Reactivity was 40 times higher when alpha-gal IgE sensitized cells were introduced to tick salivary gland extract from Lone Star Ticks compared to the baseline. Reactions were also found in Ixodes scapularis (Blacklegged (deer) tick) but not Amblyomma maculatum (the Gulf Coast tick).”4 Knowing the Blacklegged (deer) tick also carries Alpha Gal in its saliva could finally explain why so many have been diagnosed with Lyme Disease AND Alpha Gal. It also lends to the theory that since it is in the tick’s saliva, the tick doesn’t have to be attached for several hours, let alone several days to transfer AGS.;
I don’t know about you, but these new research findings and data are VERY concerning to me. One of the things those of us with Alpha Gal Syndrome have to be very careful of is additional tick bites, as they will increase our reactions. And for those of us who live in Lone Star ‘hot spots’, avoiding additional bites for any length of time is nearly impossible.; So, my questions to the TBDWG are – What, if anything, is being done and/or researched in respect to tick tracking and eradication? What, if anything, is being done and/or researched in respect to our military men and women and prevention of tick bites and tick borne diseases and illnesses and/or their treatment? Are / can these methods of eradication and/or treatments be made available commercially to be used in our homes and property??
Speaking of tick born disease diagnosis and treatments, most of us who have been bitten by any tick and end up with a large welt, rashes, fevers, fatigue, flu-like symptoms or even the classic ‘bullseye rash’ and seek medical attention are either discounted completely, told tick diseases are rare or are not given the proper dosage of the recommended protocol for a long enough period of time to stop further illness. My question – will funding be recommended to better educate our medical industry overall? This training is desperately needed for any and all tick borne diseases, not just Alpha Gal Syndrome. With so many new and developing tick borne diseases, educating our physicians, emergency teams, clinicians and first responders to recognize symptoms of tick borne illnesses, request proper testing, quick and proper diagnosis and treatments are paramount. And first and foremost, to listen to their patients.
We have information and research that proves vaccines, medications, even daily supplements that contain mammal products and by-products like gelatin cause reactions for those of us with AGS, yet doctors are pharmacists will tell us that, ‘No, you have to ingest red meat, mammal meat’ or ‘trace amounts won’t bother you’. Yet we see research that says otherwise and patient’s testimonies. This is another GAP in training our medical industry. Even trace amounts CAN cause severe and possibly fatal allergic reactions. Let’s start with Cetuximab, the cancer drug that triggered anaphylaxis and deaths resulting in the discovery of Alpha Gal Syndrome. 5 Then there has been research linking anaphylaxis to the Zoster (Shingles) and MMR Vaccines.6 Then came Shingrix , another Zoster vaccine, which, despite a few prominent Alpha Gal Syndrome allergists approving the recent Shingrix Zoster vaccine as safe for those of us with AGS, however we know it is grown in hamster ovaries. Recently one of our members posted (I have permission to share), “With the help of my Pharmacist on the phone with Shingrix manufacturer, it is verified that 38% of allergic reactions to Shingrix occured in those with Alpha Gal. Because if this, Shingrix recently began researching the allergy. No specific information on the design of the study.” She also posted, “we all react differently and at differing levels of severity. The Pharmacist advised against it (being a Pharmacist who has a responsibility not to fill if on an allergy list for a patient). Fortunately I have a PCP who will listen. He had prescribed and will no longer do so. the Ovary was the reason I asked the Pharmacist and we pursued it so diligently.” Another member replied (I also have permission to share), “I had the shot and reacted - mainly hives, itching hands/feet, swollen eyes , no throat closing. It took a few days to get over it.” When asked if she reported it to her doctor since those are listed as severe anaphylactic allergic reactions according to FARE, her reply was, “I reported it to my Doctor at the time. He said as far as he knew there was nothing in it that could cause a reaction from Alpha-gal. He knows and believes Alpha-gal exists and is proactive. Most likely it was not reported.”
NOTE: Quoted from the FDA.gov site paragraph 2 under section 11 Description “The gE antigen is obtained by culturing genetically engineered Chinese Hamster Ovary cells, which carry a truncated gE gene, in media containing amino acids, with no albumin, antibiotics, or animal-derived proteins. The gE protein is purified by several chromatographic steps, formulated with excipients, filled into vials, and lyophilized.” 7
What is alarming to me is besides pharmacies giving flu shots (many can cause anaphylaxis in AGS patients), many pharmacies also administer Shingles, MMR, Chickenpox, Pneumonia, Tdap, among others. Is the pharmacist asking, ‘have you been diagnosed with Alpha Gal Syndrome’? Does the patient know enough to inquire if it’s a safe vaccine if they have AGS.; If our doctors don’t know or think they will harm us, why would a pharmacist? I wonder just how many people have anaphylaxis after a vaccine and never report it, let alone report it to the doctor (like above) or pharmacist and it doesn’t get reported as a vaccine injury or allergy. How many have died?
This is what we constantly face – day in and day out – the question … ‘is it safe?’ – ‘Will I have a reaction and how bad will it be?’ – ‘Will I end up in the hospital - AGAIN?’ The point is, Alpha Gal Syndrome is not ‘just an allergy’ to ingesting mammal meat, which is what many doctors are still telling their patients. It is a tick borne illness, a Syndrome that causes us to be allergic to much, much more than just eating mammal meat … topical lotions, medications, supplements, vaccines, airborne ‘fumes’, etc. Many of us become recluses, afraid to be mocked, afraid of another tick bite, afraid to use products or eat anything because there may be hidden ingredients that contain mammal or cross-contamination. Heaven forbid we try to eat out at a restaurant. If most doctors don’t believe that ‘trace amounts’ of mammal in medications, vaccines, etc. will cause a reaction or harm us, why should anyone? But it can and it does! So again I ask, what, if anything, is being done to educate our medical and pharmaceutical professionals? Will funding be recommended or nationwide educational programs be recommended by this group to update information on just how life-threatening AGS is?
I am glad to see that some of the recommendations made in the group’s last report is being taken seriously and being disseminated. That more information is becoming available via internet searches. But there is still a LONG way to go. And not just with AGS, but with all other tick borne diseases as well. People don’t seem to understand, something has changed in the ‘tick world’; they carry more and more deadly pathogens than we’ve ever thought. Prevention education is paramount. It would be easy to create and support a Nationwide Tick Bite Prevention Educational program distributed via Mass Media. Remember Smokey the Bear and preventing Forest Fires? Or the drug use campaigns? Prevention is Key. Don’t get Bit – Don’t get Sick. A campaign to help people recognize tick borne illness symptoms and how soon they come on after being bitten.
The Mayo Clinic has a very informative page regarding Alpha Gal Syndrome.8 It gives an Overview and discusses Symptoms, When to see a doctor, Causes, Tick Bites, The cancer drug, Cetuximab, Risk factors, Complications, and Prevention. Now that we know both the Lone Star and the Blacklegged (deer) tick carry AGS in its saliva, minor updates will be needed as more research is done, discovered and data verified. As a patient, and for what it’s worth, in my opinion, it is one of the most reliable, best written and most informative material available via an internet search.
I only wish our government websites were as inclined to offer more accurate information. Especially for those people who are being diagnosed with AGS and seeking real answers. For example the CDC webpage on Alpha-gal Allergy. First, despite researchers and allergy professionals recognizing Alpha Gal as a Syndrome that causes allergic reactions, the CDC is still labeling it Alpha-gal Allergy. Two, not much information is provided and what is, is very basic and presented in a Q & A manner. Lastly and most disturbing, at least to me, is the almost blatant denial that AGS is caused by a tick bite. “Can you get an alpha-gal allergy from a tick bite? Scientists do not yet know. &Data from the United States and other countries suggest that alpha-gal allergy may be associated with tick bites. However, more research is needed to determine if tick bites can cause alpha-gal allergy.” 9 Considering all of the research that has been done over the past 10 years here and 20-30 years in Australia and is out there, especially now with the new research proving it’s in the saliva of both Lone Star and Blacklegged (deer) ticks, how can this type of statement be made? Not to mention, the Alpha-gal Allergy webpage is actually a sub-section subject under the header of ‘Ticks’! And the very next Q&A says, “What can you do to prevent alpha-gal allergy? Until additional research confirms this association with tick bites, take steps to prevent tick bites.” 9 I’m sorry, but to me this is almost dis-information. I had hoped for more complete information, not an almost deliberate denial that it is tick borne.
In closing, once again, I’d like to thank the Tick Borne Disease Working Group, all it’s committees and individuals for all of the work you are doing in advancing knowledge, research and information into what many of us believe is not only a tick epidemic, but an epidemic of tick borne diseases that not only affect our health and well-being, but can be devastating, debilitating and deadly.
1 Collaborative-Tick Surveillance Works: An Academic and Government Partnership for Tick Surveillance in the Southeastern United States (Acari: Ixodidae) https://academic.oup.com/jme/advancearticle/doi/10.1093/jme/tjz055/5480111?fbclid=IwAR2jpHdCHreFm_qEgA1WrHJLeJN4wxnfH32CPqlPq6vDgrPlCFa9hsCs_t0
2 Ticking Meatmares https://grist.org/article/lone-star-ticks-are-a-carnivores-nightmare-and-theyre-just-waking-up/
3 Warning: Lone Star Ticks Spreading Pork and Beef Allergies Across the U.S. https://pjmedia.com/lifestyle/warning-lone-star-ticks-spreading-pork-and-beef-allergies-across-the-nation/
4 Red Meat Allergy May Develop due to Tick Saliva, Not Blood Meal Status https://www.aaaai.org/about-aaaai/newsroom/news-releases/red-meats
5 Why are so many people getting a meat allergy? https://mosaicscience.com/story/mammalian-meat-allergy-alpha-gal-allergic-lone-star-tick-bite/
6 Anaphylaxis after Zoster Vaccine: Implicating Alpha-Gal Allergy as Possible Mechanism https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5420485/ and https://www.jacionline.org/article/S0091-6749(16)31455-5/fulltext
7 Highlights of Prescribing Information – Shingrix https://www.fda.gov/media/108597/download?fbclid=IwAR3RZ9YW7qeEDGnijq1WGgp2KdPbDwqILqacz6shn1ic3oMeTOm75ft-owM
8 Alpha-gal syndrome (Mayo Clinic) https://www.mayoclinic.org/diseases-conditions/alpha-gal-syndrome/symptoms-causes/syc-20428608
9 Ticks > Alpha Gal Allergy https://www.cdc.gov/ticks/alpha-gal/index.html
Jennifer A. Burton
Founder / Outreach Coordinator, Alpha Gal Encouragers – NW Arkansas
Beth Carrison
Dear Working Group -
Thank you for your time and attention to all tick-borne conditions.
I write today to request for funding be set aside for testing and research specifically related to Alpha-gal Syndrome (AGS). The affects of AGS are far and wide. Below are a few areas to consider spending time and resources on:
Mammalian Derived Ingredients - At what point, if any does it become undetectable? Studies to be conducted on ingredients found in foods, products, OTC and/or Rx pharmaceuticals, including medical and dental products used in procedures.
Airborne Exposures - How does airborne exposure affect some individuals, and why is it worse for some but not all AGS sensitized patients.
Gut Health - Does gut health play a part in susceptibility and/or recovery/remission/decreased sensitivity? Is there a bacteria strain that is more or less prevalent in those with AGS vs those who were bitten but have not become sensitized in their geographical area?
Bite to Reactivity - How does sensitization change over time? For example; from date of bite to lone year from the bite. Does diet, or environmental circumstances play a part in any of it? Think; Gut health, mold, other health conditions, occupation.
In addition to the above, there is an urgent need for a proper diagnostic code. Imagine gasping for air, praying you don't die from anaphylaxis? In that moment, you are often unable to articulate what Alpha-gal Syndrome is when you have airway restrictions, or are consumed with painful burning skin that itches and welts up all over your body. The medications or IV fluid or adhesives for the heart monitor, and tape to hold the IV needle and tube in your arm may add to your health crisis.
Having experiences this situation personally, it’s frustrating when your emergency care professionals question you and become agitated because you are citing things that sound utterly fabricated or as if it came from a unreliable webpage or social media false news. Currently, patients are left own their own explaining over and over and over to new staff. This is dangerous and unnecessary considering it's been a known health concern for far too long now.
Lastly, research needs to be conducted specifically with those diagnosed with Lyme Disease to determine what percentage now also test positive for Alpha-gal Syndrome too. See also above where I requested testing or study on bite to reaction timing. After the last serval months speaking about Alpha-gal Syndrome, I encountered dozens of people who recall only being bitten by the blacklegged tick which we now know was documented as having found AGS in it's saliva. More information at:
https://protect2.fireeye.com/url?k=b9b919a7-e5ed308c-b9b92898-0cc47a6d17cc-6b7dc350f60d9031&u=https://www.tbcunited.org/blog/alpha-gal-in-black-legged-tick-saliva.
Sincerely,
Beth Carrison, INHC
Tick-borne Conditions United (TBC United)
Annia Contreras
I am a 49 year old mother and wife with Alpha Gal. I reside in Tecumseh, Mo.
I am writing this in hopes of getting more attention to the syndrome Alpha Gal, also known as Galactose-alpha-1,3-galactose. I was diagnosed with this a year ago in April. Although some have heard of this syndrome most haven't. The majority of the medical field are some of those who haven't. Myself and other's diagnosed with this are very dependent on the medical field being educated and informed about this syndrome. Matter of fact, our lives depend on it! We react with a variety of symptoms depending on our tolerance to many different foods. Mammal and mammal by products being the main cause. This can include any kind of mammalian meats, dairy and many medications. Everywhere I go, I have to carry an array of tablets that can beat back an allergy attack, and an auto-injecting EpiPen that can jolt my system out of anaphylactic shock. We need to support the National Institute of Allergy and Infectious Diseases in educating people about Tick-Borne Diseases and put more funding toward research on this before it becomes an epidemic. More and more people are being diagnosed daily. Going to an ER is very dangerous to my life because staff are not educated on this and interact with me as if I am crazy. I walk in for one kind of treatment and leave with an allergic reaction several hours later which includes severe hives, swelling, low blood pressure, dizziness, headache, difficulty breathing and anaphylaxis. All due to medical staff not taking this seriously and providing me with products that have mammal in them even though I have stated I am allergic and have severe reactions.
The unrecognized dangers aren’t only sweaters and soaps and face creams. Medical products with an animal origin include the clotting drug heparin, derived from pork intestines and cow lung; pancreatic enzymes and thyroid supplements; medicines that include magnesium stearate as an inert filler; vaccines grown in certain cell lines; and other vaccines, and intravenous fluids, that contain gelatin.
Alpha-gal is a sugar; alpha-gal patients tolerate meat for years before their reactions begin; and alpha-gal reactions take hours to occur. Plus, the range of reactions is far beyond what’s normal: not only skin reactions ranging from severe to mild cases but anaphylaxis in the most serious case, but piercing stomach pain, abdominal cramps and diarrhea. So please help people like me with the continuing fight against Ticks and the diseases they cause.
I would like to thank and show appreciation to the Tick-Borne Disease Working Group for providing all that is needed in the fight against Tick Borne Illnesses. We need continued support and advocates.
Thank you for your time.
Annia Contreras
Nick Costa
I'm a former member of the chronic Lyme community who only got my health back by leaving the cult-like community despite all the threats and intimidation about how I would never get better if I didn't continue to pay "Lyme-literate" physicians (read: modern day snake oil salesmen). I got banned from numerous support groups just for sharing my story about how I recovered and got my life back after a multi-year struggle because my experience doesn't fit the chronic Lyme propaganda. I feel I need to make sure my voice is heard, and some things about their advocacy that pose a danger to public health (not just those who have Lyme) are brought to your attention.
I am deeply concerned, troubled, scared, you name it by the continued crazy claims by the "Chronic Lyme" community, and several irresponsible suggestions of this Working Group, especially in the face of antibiotic resistance which already kills tens of thousands of people more than Lyme every year. Narratives are how ideas sell, and you are harming people by letting an anti-science movement that has been deemed a danger to public health spread its narrative instead of making it crystal clear to the public where the science actually stands in this.
Does it not raise major red flags to you how irrational and unhinged these suffering "Chronic Lyme" community members are when they accuse infectious disease researchers of being like rapists? Why would anyone spend years in medical school with the intention of harming people? Does it not raise major red flags to you that most of the "chronic Lyme" community believes that AIDS, ALS, Alzheimer's, Parkinson's, MS, Syphilis and many more health conditions are *all* actually Lyme disease but all of our best scientists and microbiologists can't figure that out?
Are you aware that people are dying because they are told they have "chronic Lyme" when they actually have cancer that would have been treatable had they not been recruited into the chronic Lyme community? Are you aware that these people are out there in dedicated droves telling patients with degenerative diseases and their family members that they should stop taking their medication that is saving/prolonging their life and spend tens if not hundreds of thousands of dollars treating a nonexistent chronic Lyme infection instead? How would you feel if you found out your mom or dad was dying from ALS and instructed by these people to stop taking their medication because it's poisoning them, and were sent to a "Lyme-literate" doctor who then treated them for chronic Lyme until they passed away? I could go on for hours and hours about things just like this and worse that I've seen, these are just some of the things I see happening so often it's expected and normal to me at this point.
These are not extreme cases these are things I see happening to people every day. Parents falsely believe all of their children have congenital Lyme and these kids grow up spending their entire childhood being told they have chronic Lyme and being treated at great cost for a disease that they don't actually have. It's not uncommon to see women claim that 4-plus kids of theirs were all born with Lyme disease. These are not the type of people whose opinions should be taken into consideration when it comes to actual Lyme disease.
And why is it that almost all of the people pushing the "chronic Lyme" narrative are middle and upper-class, and in particular, white women. Why are other races and lower-class citizens seemingly immune from getting chronic Lyme? Shouldn't minorities be getting infected at the same rates as white people? What is the chronic Lyme cult's explanation for this disparity?
Why are you even entertaining this complete manufactroversy and ignoring the scientific evidence and giving a platform to a pseudoscientific cult-like community? You are allowing them to spread their narrative and falsely claim legitimacy when they have no credible scientific backing or evidence behind their claims. You need to change the narrative before they hurt countless more people.
I understand it is harsh to equate them to a cult, but having once believed all of their propaganda and having been part of the community myself that is the most accurate word to describe how these communities operate. To this day I am still threatened that I am delusional for thinking my health is better and I will regret believing I am better when it "comes out of remission" and I am more sick than ever. I'm constantly told that I am a paid shill for the CDC because it's impossible for people to get better without snake oil treatments like I did and other absurd reasons.
Please listen to actual experts and credible scientists and not the propaganda of sick and suffering people who are being exploited due to their desperation, nor the charlatans who exploit them (whether knowingly or unknowingly).
If you have any questions for me or would like to better understand what the chronic Lyme community is truly like I would be happy to tell or show you anything you want to know. They have caused me and countless others too much harm for me to stay silent, the least I can do is speak up, especially when most who want to are too scared to or have a life to live and don't want to be under constant attack just for speaking up.
Thank you for your time, and I beg you to side with science rather than continuing to give a pseudoscientific community and those who exploit them a platform to spread more misinformation and cause even more harm than they already have.
With the utmost sincerity,
Nick Costa
Abby Hartman
I was injured by chronic Lyme pseudoscience and beg you to read and share my story. Thank you for your time.
For nearly 11 years, I told people I had chronic Lyme disease. It wasn’t true. Then I told people I had Post Treatment Lyme Disease Syndrome, but that can’t be true anymore, either. The one thing I know for sure is that I was a victim of “chronic Lyme” treatment. This consisted of false diagnoses, long-term antibiotics, and other inappropriate drugs and supplements, all based on dangerous pseudoscience.
People who identify as having chronic Lyme usually become entrenched in a cult-like support group community both online and in real life. These Lyme groups are echo-chambers for pseudoscience. They convince followers that they must see self-appointed and often secret “Lyme-literate doctors” (LLMDs) who will treat them for chronic infection. These groups empower their marginalized members with validation, support, and the ability to even treat themselves by comparing notes when there is no access to a LLMD. Their multiple conspiracy theories mirror those of the anti-vaccine community in many ways, and both movements overlap. As it is with cults, it doesn’t matter who you are or how educated you are, anyone can get sucked in. However, this community is disproportionately female. I suspect one reason is that more women report not being taken seriously by doctors, and perhaps many women have little choice but to look to the fringes for help out of desperation. Once you’re marginalized, vulnerable, desperately ill, entrenched in online pseudoscience and conspiracy theory echo chambers, and wooed by the nicest quacks you’ll ever meet, you’re a Lyme Warrior. If you or someone you love is a Lyme Warrior, then please learn from my mistakes.
In 2006, I was 28 years old and had already been diagnosed with various intestinal infections, fibroids, ovarian cysts, dysmenorrhea, allergies, anxiety, and asthma. I lost several jobs from missing work too much due to illness. For years, I didn’t think anyone, including doctors, took my pain seriously. In hindsight, I realize many did and attributed it to physical symptoms that can accompany anxiety, but they rarely attempted to rule anything else out. Any doctor I saw about my pain would respond by saying I looked great. I perfected the art of dressing for doctor appointments. If I looked too put together, they would not take me seriously, and if I looked like a slob, then they would not take me seriously. They would always immediately tell me some people are more sensitive to the aches and pains of everyday life. I also got the feeling doctors thought I was fishing for pain medication, although I never asked for any because I was scared of them thinking this. Finally, in 2007, I underwent an exploratory laparoscopy after begging for one for years. My surgeon found and fixed several intestinal adhesions and diagnosed endometriosis.
Soon after this procedure, I started to have problems with joint pain and fatigue. I had previously lived on a ranch in Texas hill country, upstate New York, and Minnesota, and I had been bitten by numerous ticks in all those areas. I liked to walk in the woods and worked with animals professionally. Because of these things, I asked my doctor about Lyme disease. Since I never had a bullseye rash that I knew of, my MD didn’t think it was appropriate to test. I was eventually diagnosed with fibromyalgia. I tried a couple of different anxiety medications for this but nothing helped. My pain grew worse.
One day at work, my coworker recommended that I see her chiropractor, which I thought was total bunk. She was adamant, and I thought I’d see what it was about since I didn’t know what else to do. I figured it couldn’t hurt. I immediately felt uncomfortable there because he started doing applied kinesiology, and I honestly couldn’t stop nervously laughing because it seemed so ridiculous. He would place objects on my chest and test my arm strength to see if proximity to these objects made me weaker, which he thought would indicate organ dysfunction. This chiropractor told me I had Lyme disease, which caught my attention mostly because of my own suspicion. What’s weirder than the fact that he diagnosed this by placing a CD on my chest with some sort of frequency recording on it, was that he told me to watch out for other people with Lyme disease, because they’re “Victims with a capital V.” I asked him why that is, and he said they are caught up in conspiracy theories. It was all very odd, but I went back to my regular doctor and told her my chiropractor said I should be tested for Lyme, so she finally tested me.
My ELISA test was positive for Lyme, so my MD diagnosed me with Lyme disease and gave me a month of Doxycycline. I honestly can’t remember if she did a Western Blot, which could have ruled out a false positive (I’m on a hunt for these old records). After a month of treatment, there was a lot of improvement, but I was still sick. I was referred to an infectious disease doctor who did a Western Blot, which was negative after my treatment. He said I didn’t have Lyme anymore, and when I told him I still felt sick, he bluntly told me it was all in my head and that maybe I needed a little attention. This was over a decade ago, before I discovered that Post Treatment Lyme Disease Syndrome was a possibility. At the time, I didn’t know various other diseases have post treatment syndromes, too. My Lyme pain felt unique, and I knew it well. Questioning that felt like gaslighting.
My health spiraled downhill, and no one took my pain and new neurological symptoms seriously. I could barely walk or even talk some days. I had joint pain, neurological pain, slurred speech, paresis, cognitive problems, and even hallucinations. I couldn’t work. After I had a spinal tap during an ER visit that didn’t explain my symptoms (and a spinal fluid leak), I started to really look online for other stories like my own. I joined a bunch of online support groups where I became convinced I was still infected with Lyme. I traveled four hours to Dr. [redacted], MD, a LLMD in Wisconsin, who was recommended to me by these online groups through private messages. I was asked to keep his identity a secret, lest he be persecuted by medical oversight groups. [redacted]
Dr. [redacted] diagnosed me with chronic Lyme disease and Bartonella without doing any labwork. I was put on Soma (a muscle relaxer notorious for its addictive properties), various antibiotics that I pulsed for years, B12 injections, Meloxicam (an NSAID), probiotics, and Nystatin for yeast problems. He was worried about risks associated with long-term antibiotic use and thought pulsing them would help, which meant doing shorter treatment courses with small breaks between to “build up my gut” again with probiotics, as well as changing the antibiotic type frequently to reduce resistance and target the supposedly different manifestations of chronic Lyme (cyst form, biofilm, etc.). I immediately became extremely ill, but this was justified as being a Herxheimer reaction. Therefore, the sicker I got, the more I was told that meant treatment was working because “Lyme releases neurotoxins during die off.” I felt so sick that I wanted a second opinion.
I went to an endocrinologist and was diagnosed with Hashimoto’s thyroiditis and Vitamin D deficiency. After treatment for those issues, I was only slightly better. A neurologist worked me up but didn’t have any answers. I could not afford to keep going to specialists. [redacted] so I started to pick and choose. I chose Dr. [redacted] and more chronic Lyme treatment after some convincing from online groups, coupled with the rude dismissals of traditional doctors.
I continued chronic Lyme treatment but started to develop severe gastrointestinal issues. I decided to go to a gastroenterologist at the [redacted] Clinic in NE Minneapolis. He first did an endoscopy, and then I went back for a colonoscopy. During the colonoscopy, the sedation did not work. I begged him to stop the procedure because it was too painful. He told me I was in a confused twilight state and would not remember anything even though it seemed traumatic in the moment, and he continued. I screamed repeatedly for him to stop, and he called nurses into the room. He told them I was dramatic, and they held me down while he finished the procedure against my will. My husband was trying to get into the room because of the screaming, and he eventually was let in as they were finishing. They found some ulcers and an issue where my intestines spasmed violently, so I was put on a medication that was would inhibit my intestinal contractions. It didn’t seem to help, so I discontinued using it and never returned because of my horrible experience. I developed extreme symptoms of GERD and was treated for that and possible IBS through my new regular MD (my previous MD had moved). This Dr. [redacted] thought long term antibiotic use was causing the damage, and I said as much to Dr. [redacted]. I planned on stopping treatment, but Dr. [redacted] convinced me that that my GI issues were another symptom of chronic Lyme infection and kept me on antibiotics.
All of my symptoms (except for GI issues and my original shoulder pain) resolved with time. About two and a half years later, I thought of myself as cured and never looked back. I really believed the antibiotics worked and wrote glowing reviews of how Dr. [redacted] saved me. In reality, it was probably a placebo effect and a regression to the mean. I went to him when I was at my sickest and got better after years. Would I have gotten better anyway, perhaps even faster, without the side effects of treatment? [redacted]
I felt cured, and so I went on to have a healthy baby. I had a truly traumatic hospital birth based on how I was treated and not for any medical reason (that’s another story for another time). When I became pregnant with my second child, I started having panic attacks just thinking about hospital birth because of my first experience. I opted for a homebirth and found (yes, you guessed it) a Lyme-literate homebirth midwife. I filed for bankruptcy due to medical bills alone and had my court hearing while I was actively in labor with my second child. [redacted] I came down with postpartum anxiety that manifested as OCD (horrific, invasive thoughts and compulsive rituals that hadn’t troubled me since I was a child). I was scared to tell my doctor. I was scared my chart was flagged for being a crazy person, I was scared I WAS a crazy person, and I became sick again with that old shadow that felt like Lyme. By this time, I had yet another new MD because I had moved: Dr. [redacted], MD. She was treating me this whole time, attributing my symptoms to postpartum hormonal changes that affect joints and postpartum anxiety. I was also eventually diagnosed with carpal tunnel and hypothyroidism when I kept coming back to her with more issues.
I was convinced my Lyme-like symptoms were psychosomatic this time, given my mental health. I went to a psychologist who specializes in postpartum issues. I was treated for postpartum anxiety and OCD, but I was also told that I was not psychosomatic and looked truly ill with what was clearly neurological issues. I became so neurological that my clients at work would wonder if I was having a stroke and insist on ER visits. A different neurologist (my original one dropped me because of my bankruptcy) recommended more diagnostics that I ended up declining due to cost, but I did do an MRI. The MRI was normal, but I was given strict instructions to stop driving based on my neurological exams. My health declined again to the point of not being able to work anymore.
I went to [redacted], MD one day when I was so neurological that I was scared. I planned on returning to the neurologist, but there was a wait, and I couldn’t wait for advice. I kept having episodes where I would look down at my arm, and it looked like someone else’s arm. It looked like the arm of a strange man was where mine had once been. It got to point where I wanted the arm off of my body and fantasized about taking it off, so I knew I needed help right away. I had already gotten back into the chronic Lyme groups online, asking if this had happened to anyone else. Of course it had! I told all this to Dr. [redacted] while slurring my speech. I had my children with me, and she was concerned about my ability to care for them despite having help from a spouse, and she accused me of being drunk before examining me. She said she would notify a social worker but apologized later for it. After an argument, she recommended I see a different doctor who supposedly had more experience with “Lyme patients like me”. She referred me to an integrative medicine doctor, [redacted], MD, without explaining what that is. She dumped me onto a quack she thought I’d like (she was right), and I thought I had found the Holy Grail: a legit, mainstream doctor who believed in chronic Lyme and was even covered by insurance-- one who practiced at the chain of hospital-affiliated clinics near me. Dr. [redacted] was not accepting new patients, so she placed me with her PA, [redacted]. [redacted] diagnosed me as having a chronic Lyme infection despite another negative test. She told me to treat with long term antibiotics again. However, [redacted] was uncomfortable prescribing them, so she recommended I see any LLMD again for the antibiotics, but do everything else through her. She also diagnosed me with pyrroluria and treated with countless vitamin supplements, which I had no idea was more quackery. It was only months later that I found out pyrroluria is not a real disease.
My new LLMD was recommended to me by a Facebook Lyme support group, although [redacted] is technically a nurse practitioner and midwife instead of an MD. She serendipitously was a friend to my midwife and had previously reached out to me for my dog training services, but I had been on medical leave at the time. She diagnosed and began treating me for chronic Lyme and Bartonella, based on my clinical presentation. She told me the eczema I had seen a dermatologist for was a Bartonella rash. She started me on countless supplements and three antibiotics simultaneously. She suggested I do this for at least several months, probably much longer. I got better with what I now believe to be a placebo effect, right before I got much, much worse. I would projectile vomit after every meal. [redacted] previously diagnosed gluten sensitivity triggered by Lyme, despite my having had a negative Celiac test with Dr. [redacted]. [redacted] diagnosed Mast Cell Activation Syndrome, and [redacted] did labwork showing my histamine was extremely high. I had heart issues that I went to after hours urgent care for twice, and both times I ended up in the hospital for monitoring. [redacted] convinced me all these issues were from a chronic Lyme infection, but I wasn’t fully convinced. I was struggling with a cognitive dissonance that I couldn’t reconcile because of a facebook page I liked called “We Love GMOs and Vaccines”. They would occasionally post content about the cult of chronic Lyme pseudoscience. I was furious. They claimed to be science communicators and had gotten one thing so wrong. Or had they? Could I be wrong? I left my Lyme Warrior echo chamber and started following skeptics online instead, essentially “bubble hopping”.
[redacted] This was when I found myself Googling “is chronic Lyme disease real?” in earnest.
I stumbled on the only comprehensive resource I could find online, Lymescience.org, which links to legitimate science (worldwide consensus) and resources. I sat with this information for a while and spoke again with all of my doctors-- even Dr. [redacted] who essentially dropped me after accusing me of being drunk. I reached out to friends, family, and even veterinarian coworkers with extensive knowledge about Lyme in dogs. I was shocked to learn that some people close to me knew this was quackery and didn’t speak up before I did, even feigning support. This was more upsetting to me than if they had argued with me about my illness really being Lyme, which feels like gaslighting for sick people. [redacted] I spoke with others online who are victims of chronic Lyme treatment. I left my integrative medicine doctor and found a traditional MD. I was no longer a Lyme Warrior.
My new doctor has never heard of the cult of chronic Lyme and stared at me in shock when I told her my story. She thinks my mysterious illness is partly damage done, and she is properly appalled that people think chronic Lyme is a real thing. I trust her to tell me the truth, even if it’s not what I want to hear, and I trust she’ll do it compassionately. When you’ve lost everything to illness, you build up a network of support in which to survive it. People who leave the chronic Lyme cult are often still ill, but now they’re without support to boot. They are even attacked by other Lyme Warriors for speaking out. Honestly, if my speaking out means I might indirectly save even one child from harm, then it is worth it. Being able to eat gluten again isn’t so bad, either.
Abby Hartman
Minnesota
4/23/19 Addendum
Update: After new medication for mental illness, my neuropathy is almost gone. Mental illness is physical! It’s definitely not “all in your head.” I was radicalized when I was told it meant I was “needing attention.” Anyone who dismisses this by claiming I’ve let people just convince me I’m crazy is part of the problem
Marianne Harvey
After about six months of numerous tests (bloodwork, ultrasounds, CAT scans) trying to determine why I had so much abdominal & back pain, fatigue, muscle weakness, and random burning in my feet and kidneys...my primary care physician finally diagnosed me with RMSF on May 18, 2018. (I haven’t seen a tick on me in over 20 years.) My blood work also showed my EBV was reactivated and totally off the charts with an active infection.
I was given Minocyline for two weeks and when I wasn’t any better when testing again, I was given a month long script for Doxy (100mg daily). I was only given the Doxy because I demanded it because all of the research I had done suggested I should have been given that in the first place. I later realized I should have been given it twice a day...but by then I was so sick of the Doxy herxing and chose to reach out to another Dr for better help.
I called numerous Infectious Disease Drs in my area and none of them would see me. They explained that if I had taken the medication, then there was nothing else they could do for me.
I was rejected by the Mayo Clinic (Infectious Disease and Internal Medicine) and Emory University but my calls were returned by the Cleveland Clinic, but I was told it would be $5000 out of pocket and I’d have to hope my insurance reimbursed me as they would not file. Traveling and care would have been close to $7000 and I just didn’t have those resources.
I contacted the CDC because I had never heard from my local health department and felt like someone should have been trying to track my success/give guidance. When I spoke to the CDC, they referred me to their website and said that I should hear something from someone when my Dr reported me. That never happened.
I reached out to LLMD’s only to realize that they really weren’t specialist in RMSF and they all felt as if it was just a co/infection to Lyme and the Lyme must be treated first. I DO NOT HAVE LYME.
I finally found an ID in Jacksonville who said he’d see me. After I traveled three hours to see him, he began to tell me that since I had taken my meds, that I was absolutely the victim of three false positive reports as there was no way I was still sick. He told me that if I was ever really truly positive for RMSF, that I would have been dead by then. He suggested psychiatric care and medication to help me through my situation.
At that point, it was three months after my diagnosis and my memory, Brian fog, speech, vision, body aches/pains, burning sensations and fatigue was almost unbearable. I couldn’t find anyone to treat me that was affordable or near by and my Dr thought I was crazy.
Heartbroken and confused, and feeling as if I was deteriorating daily...and no one was there to help me...I found online support groups as well as started natural protocols of many supplements that I had read about online.
I focused on taking supplements that were for pain (Magnesium MALATE) brain/cognitive (Magnesium L Threonate) and Glutathione. I took high quality vitamin C, D3, K2 and Colostrum for improving my immune system. I took Monolaurin as an antiviral/bacterial/fungal and a fabulous pre/probiotic with vitamins/minerals/ and digestive enzymes. At one point, I was spending over $400 a month on supplements...and after a couple of weeks, I noticed a good amount of improvement and at the end of three months, I felt about 80% well. This was after a total of six months fighting this demon.
I was so much better for about three months, but attribute that to resting several times a day, not working and totally focusing on getting well with my supplements and added nutrition that focused on brain sharpness and energy. (Organic Beets, blueberries, strawberries, spinach, kale, avocados, salmon, etc...)
I’ve never felt so alone or disrespected as a patient. There was a total disregard for my care and if I had not taken things into my own hands, I believe I could have possibly died or suffered more seriously than I did.
Sadly, after a few months of thinking I was finally beating the demon known as RMSF, I am starting to experience some of the same symptoms again and fear the beast is raising its ugly head again.
The brain fog is back, speech issues have returned, unbelievable fatigue with insomnia has returned and my back, kidneys and feet are hurting/burning again. And the only Dr who will see me just wants to give me a sedative/antidepressant.
I find it a shame that there isn’t more known about this disease and how to care for us. I feel we RMSF sufferers are the wicked stepchild of Lyme and those patients get all of the attention and funding.
I’m praying that you will realize that there are thousands of us out there that are still suffering and that something must be done to help us. We deserve to be treated better than this and for our medical care to be covered under insurance as well as for chronic or relapsing RMSF to be diagnosed and accepted in the medical community.
Our quality of life has been taken from us while we have been alienated by our family...who has listened to the reports of uneducated professionals saying we never really were sick in the first place. It’s shameful at best.
Please use your position to give RMSF the attention it deserves.
Marianne Harvey
Guyton, Georgia
Lorraine Johnson
Will the interests of the Lyme community be effectively represented on the Tick Borne Diseases Working Group?
If patient interests are not sufficiently represented on the Tick Borne Diseases Working Group (Working Group), then its processes will lack credibility and may harm the Lyme disease patient community. The legislation establishing the Working Group was included at the request of the Lyme disease community. Our organization, LymeDisease.org is one of the oldest non-profits serving this community and is the largest communications network in Lyme Disease. We represent the interests of patients with chronic Lyme disease and mobilized over 14,000 patients to contact their legislatures to ensure that the Working Group was included as part of the 21st Century Cures Act.
The need to establish a Working Group was driven in the Lyme disease community by the fact that the interests of patients with chronic Lyme disease have been dismissed and trivialized and the patients and community have been subject to stigma, neglect, discrimination, a lack of research funding, and barriers to access the medical care that they need. (Johnson 2019) The phrase “nothing about us without us” conveys the urgent need for representation of patients with chronic Lyme disease as it does for other similarly disadvantage and marginalized groups.
The Working Group is subject to the Federal Advisory Committee Act constraints, which provide for nominations to the committee and for “consideration of a cross-section of those directly affected, interested, and qualified as appropriate to the nature and functions of the advisory committee”. (GSA 2011) In keeping with the legislative purpose of the Working Group, it is important that patients affected by chronic Lyme disease and their caregivers be meaningfully represented. The Working Group should not include patients who are merely tokens intended to create the appearance of representation, when the person is either not recognized by the community as having the skills, lived experience, or the ability to be outspoken, knowledgeable and articulate about the issues facing the community. It is also essential that those representing the interests of the chronic Lyme disease community have the time available to effectively serve and that the community regard them as being capable of providing effective representation.
Who can effectively represent the interests of patients with chronic Lyme disease?
We conducted a survey of over 1,800 patients with chronic Lyme disease to identify the qualifications that patients felt were essential for effective representation of the community on a government panel as well as those that patients would regard as merely token representation. The results of that survey are presented below:
To be a meaningful representative, patients chosen for a panel should: a) have or be a caregiver to a patient with chronic Lyme disease and b) should be an officer or director or someone vetted and approved by a recognized and trusted patient advocacy group (PAG) or someone approved by a PAG. The latter ensures that they are someone recognized in the community as representing the interests of those with chronic Lyme disease. PAGs are unlikely to give their stamp of approval to someone who lacks the knowledge and ability to hold their own among a group of researchers and to be outspoken about the interests of patients with chronic Lyme disease. Sometimes government panels select patients who are docile and easily managed. These patients cannot effectively represent the interests of patients with chronic Lyme disease.
People who are automatically considered tokens include those who are not a chronic Lyme patient or caregivers or those to whom the community objects. A patient who has only had acute Lyme disease also did not make the grade for most respondents.
LymeDisease.org nominated a number of potential representatives for the Working Group. Most of our nominations were not affiliated with our organization. However, they were members of the community that we felt would have been able to effectively represent the interests of patients with chronic Lyme disease.
Are a sufficient number of patient representatives on the Working Group included for representation to be effective?
It is also important that a sufficient number of patients representing chronic Lyme disease be selected to compensate for the inherent power imbalance between patients and researchers generally. Patients can have a hard time holding their own in a group of researchers. How outnumbered are the patients? Who is protecting their ability to have an influence? How many patient representatives will there be on this Working Group?
The last Working Group included three patient representatives on the seven public member slots. We believe this number is sufficient provided that those selected are acknowledged by the community as having the requisite knowledge of the disease and issues affecting those with chronic Lyme disease together with lived experience of chronic Lyme disease and the willingness and ability to be outspoken and articulate in representation of the community interests. This can be assured when patient representatives are nominated by non-profit advocacy organizations who are known and trusted by the community.
Do participants on the Working Group represent industry interests?
Another critical question to ensure proper constitution of the panels is whether people on the panel represent industry interests. For example, Dr. Robert Smith who sat on the previous TBDWG, has worked for the vaccine industry. Whose interests does he serve when he sits on the TBDWG? His own? Or those of an industry likely to fund his work? You might recall that when the last panel was announced, we objected to Dr. Gary Wormser because of his extensive financial conflicts of interest, especially related to Lyme disease diagnostic testing. The central question with conflicts of interests like these are whether “industry stakeholders” are essentially given a seat at the table, when the Working Group is not supposed to reflect industry interests.
Is the legislative purpose of this panel reflected in the new Working Group?
The TBDWG was included in the 21st Century Cures legislation at the request of patients with chronic Lyme disease. The purpose of the Working Group is to advance the interests of patients with chronic Lyme disease and to include their voices in the discussion of what research to prioritize. Although the group has the words “tick-borne disease” in its title, and many patients with chronic Lyme disease have co-infections from another tick-borne pathogen, the bill was passed to address the interests of patients with chronic Lyme disease. Hence, a meaningful question is whether the panel members’ primary focus of interest is in fact Lyme disease. If it is another tick-borne disease, while their information may be generally useful, it will not further the interest of the legislative intent regarding Lyme disease. The interests of researchers in other tick-borne diseases should not usurp or replace those of Lyme disease.
Lorraine Johnson
CEO, LymeDisease.org
References:
Johnson L. Stigma and Privacy in Lyme Disease [Preprint] 2019. Available from: https://figshare.com/articles/MyLymeData_Stigma_and_Privacy_in_Lyme_Disease_Data_A_project_of_LymeDisease_org_2_11_19_xlsx/7704167
U.S. General Services Administration, Federal Advisory Committee Membership Balance Plan: https://www.gsa.gov/cdnstatic/MembershipBalancePlanGuidance-November_2011.pdf
Annie Mae King
I am 35 and own and opere my own restaurant. I was diagnosed with Alpha-Gal this last August although I’m sure I’ve had it for at least a year prior to then. I now find myself unable to cook over the grill. I’m constantly dizzy when I do and on two occasions this last month (May) I have become unable to speak, motor skills stop and I’ve hit the floor. I am constantly battling with the feeling of vertigo, nauseas, and fatigue after an 8 to 10 at my business. From the doctors assumptions it’s due to fighting off fumes and particles I inhale all day long.
I want to make you aware of how serious this condition is for me personally. This is my story.
I want to help everyone see that Alpha Gal can be a life changing, debilitating allergy. It’s changed my life. It ruined my career in cooking and thriving in the only thing I’ve known since I could stand on a stool beside my Mom and peel eggs.
Now I have invested my life and savings into school and an establishment to just be told by doctors “I’m sorry we don’t know how to prevent this or to control this, I’m sorry but you need to get out of that business.”
Well it’s not just a job or business. It’s my life and this tiny tick bite has ruined it. The worst part though is that I’ve seen 7 – yes, 7 doctors. Not one has been able to give me hope to eating and tasting my recipes. Think about it...it’s not just about not being able to eat or cook. It’s about my passion in life is food. I can’t even say it’s my spaghetti or my meatloaf anymore. I can’t try it. I have to trust my employees to taste it. That takes the passion right out of cooking for me. Now I can’t even inhale it?? I get sick and lightheaded and passout??!
Please help me. Please help us.
With all respect,
Annie King
Bear Creek, NC
Dorothy Leland
I am writing on behalf of LymeDisease.org to raise serious concerns about the process of choosing members of the Tick-Borne Disease Working Group—as well as lack of transparency about the TBDWG in general.
As I write this on May 28, 2019, (the deadline for submitting comments), there still has been no official word of new members named to the TBDWG—one week before the June 4 meeting.
The only “news” about appointments was on May 15, when the Infectious Diseases Society of America (IDSA) announced that one of its members, Dr. Eugene Shapiro, had been named to the Working Group.
Why was the IDSA privy to information that was not made public? Or why did the IDSA feel sure enough to make this announcement to their community, if they truly had no inkling about whether they had secured a spot on the Working Group?
When we asked for clarification on this issue from TBDWG staff, they told us that in fact no decision about group membership had been made as of that time. There has been no further response from them.
Perhaps the Department of Health and Human Services never intended to name new members before the June 4 meeting? If so, why wasn’t that spelled out to the public? And if true, that seems odd.
Nominations for the next iteration of the Working Group were sought in late 2018. At that time, we were told that new members would be chosen by April 2019. That date came and went with no additional information.
Again, as this is written one week before the meeting, no formal agenda has been announced. Instead, the website says “The TBDWG members will focus on plans to develop the next report to the HHS Secretary and Congress on federal tick-borne activities and research, taking into consideration the 2018 report.” But at this point, it’s anybody’s guess as to who those members are.
This is not the way to build trust with the Lyme community.
When Lyme patients advocated to include the Working Group in the 21st Century Cures Act, the idea was to bring together disparate viewpoints to help solve the Lyme crisis in the US.
All of this points to a fundamental lack of transparency about process and outcomes. This is not only unsettling to the community, it erodes the very foundation of trust that the Working Group was established to create.
Dorothy Leland
LymeDisease.org
Davis, CA
Jennifer Leon
I have had Lyme disease since the age of 5 and was properly diagnosed in 2013. My story begins while living in Fredonia, Pennsylvania. I recall crying and being in pain as early as 4 years old. I would always have my mom rub my ankle, arms, etc., more than most young child would like. I always ached. I hurt. To this day, at the age of 48, I recall the exact place I was standing when my mother told me she was taking me in to see a doctor.
In 1975 I spent weeks in the hospital, not allowed to walk. They put a needle to my ankle to see if there was fluid in it - there wasn't. The amounts of blood they drew on a daily basis, only to come up with no answers. This was when I was five years old and I remember it vividly.
I was eventually diagnosed with Juvenile Rheumatoid Arthritis and was put on 8 aspirins per day. As I got older, I continued to be in pain, I sat out many activities because of my pain - mostly in my legs and hands, but, as I would explain to each doctor, my pain was all over - from head to toe. I eventually got off the aspirins and put on pretty much every NSAID out there, as none would work and the doctors would just switch from one to the other. As I began my career, and continued to be sent to RA specialists, one then sent me to a psychiatrist. This was when I went through years of antidepressants, anti-anxiety and other mind-altering medications. I kept telling doctors that I wasn't depressed, but, they insisted the pain was "all in my head". Several RA doctors even stated "You can have RA while your bloodwork really doesn't show the marks," but they continued to prescribe more RA meds.
Realizing the RA meds weren't working, I eventually stopped taking them as well as the psych meds. I just learned to manage my days of pain. My first career I was in banking-there were days I couldn't even use a teller machine as my pain was so excruciating.
I eventually got married and had my first child in Pittsburgh, PA. Still managing the pain and eventually moving to Yardley, PA and having my second child.
Fast forward to 2010 - me and my family moved from Pennsylvania to Colorado. With a course of unfortunate events, I eventually became bedridden. I was in so much pain. It was if a mac truck was on top of me while someone else was beating me. I went to see a doctor who was recommended to me as the doctor "everyone goes to when other doctors can't figure it out". This was in the spring of 2013. Once my doctor learned I grew up in Pennsylvania, he ordered the Igenex Lyme test. It came back positive. I've also tested positive for babesiosis and bartonella. This was when my proper treatment began.
The amount of pain I've lived with, the amount of misdiagnosis, and the amount of money to finally get properly diagnosed and treated is unacceptable in the United States. I imagine daily what life would have been like if doctors were educated about Lyme disease. What is amazing to me is that this happened in 1975- when we learned about Lyme disease. It's sad that today doctor's still lack the education and knowledge about this #1 vector borne disease.
As I've gone through treatment with an ILAD's, Lyme Literate DO, I've become stronger. While I have some ups and downs, I've found a way to manage my busy lifestyle with my family. I've missed way too many soccer events and other activities of my children over this and it hurts me tremendously. Why? Because we don't have the research, the funds, the support. I've drained our bank account for treatment.
I beg that the HHS recognizes more needs to be done. No one should have to have this life of pain. Sadly, I've never really lived without pain and it's a shame. I often wonder what life would have been like if I wasn't in pain.
Kind Regards,
Jennifer Leon
Lonnie Marcum
Dear Members of the Tick-Borne Disease Working Group:
I am a licensed Physical Therapist in California. Seven years ago, I had to quit work to take care of [redacted] with flu-like symptoms and never got better. Nearly a year later, she received a positive test for ehrlichia chaffeensis. That led us to discovery of other vector-borne infections, including Lyme disease and bartonella. At the time, I knew nothing about tick-borne infections, so when her doctor gave her a 21-day supply of Doxycycline, I thought she’d be better in 21 days.
I was wrong.
Years later, after tediously treating each of her infections and repairing her immune system, she gradually began to get her health back. And today I am happy to say she is about 80% better.
Since [redacted] illness began, I have found a new purpose—to find a cure for Lyme and co-infections. I am now a science writer for LymeDisease.org, one of the most trusted sources of information for patients with Lyme disease. There I devote my time to reading current research, interviewing scientists and sharing what I’ve learned through my blog ‘LymeSci.’
What I’ve learned is that there are a lot of misconceptions about Lyme disease. First, that it is easy to diagnose, and second that it is easy to treat. Nothing could be further from the truth, in my opinion.
While it may be true that many patients who receive early diagnosis and early treatment do get better, a huge percentage of patients DO NOT receive an early diagnosis. In fact, fewer than 12% of the 12,000 patients in LymeDisease.org's patient registry, “MyLymeData,” received a diagnosis within the first month after the tick bite. (Johnson 2019)
Delayed diagnosis is critical to understanding why so many patients are left with debilitating symptoms after standard treatment for Lyme. During the months to years that patients are suffering, the untreated infection spreads throughout the body, embedding itself deeply into connective tissues where standard antibiotics have a hard time reaching. (Embers 2012, Cabello 2017, Caskey 2015) One study demonstrated a delay in treatment by as little as 9-19 days is predictive of persistent Lyme symptoms. (Bouquet 2016)
Think of these untreated infections like a leaky roof. If you can stop the leak and mop up all the water the first day, the structure will probably be fine. But if you wait a week, a month, a year or more, the damage seeps into the roof, the walls, and the floor, causing mold and rot. If you catch it early enough you may only need to replace the drywall and paint. But if it goes deeper, the structure may need to be replaced.
This is exactly what happens with Lyme patients. Some are lucky to be treated early and recover completely. Unfortunately, the majority of patients, like my daughter, are initially misdiagnosed with another illness and go months or years before receiving a proper diagnosis. During this time the infection(s) spread to the organs, the brain, the bone marrow, and the heart. (Coughlin 2018, Novak 2019)
Unfortunately, there is no standardized treatment for this patient population. The last NIH-funded treatment trial for patients with persistent Lyme disease was over 10 years ago and it did not reveal a solution. (Fallon 2008, Goswami 2013) The latest study out of Johns Hopkins University found that a triple-drug combination was the only method successful in eradicating the infection in mice. (Feng 2019)
The other issue is ticks carry multiple pathogens that can infect people at the same time. (Moutailler 2016) In the MyLymeData survey of patients with chronic symptoms of Lyme disease, over 50% had multiple infections (also known as co-infections). The most common co-infections are Babesia, Bartonella, Ehrlichia, Mycoplasma, Rocky Mountain Spotted Fever, Anaplasma and Tuleremia—all pathogens that can be transmitted by ticks. (Johnson 2014)
The issue with many of these co-infections is they are not all treated with the same prescription medication as Lyme disease. For instance, a patient may receive a diagnosis of Lyme and start taking the appropriate antibiotic, but they may also have an undiagnosed babesia infection which requires an anti-parasitic medication. As a result, this patient may not get better until all the infections are treated properly. Unfortunately, there are no clinical trials on the most effective method to treat patients with multiple infections.
This brings me to my final point—delayed diagnosis of tick-borne diseases. In my opinion, there are two things contributing to the large number of missed diagnoses of Lyme and other tick-borne diseases. 1) Lack of physician awareness and education, and 2) Lack of accurate diagnostic tools. (Cook 2016)
For example, I know a patient who just last week went to her doctor with a distinctive bull’s-eye shaped rash. Her doctor refused to give antibiotics because her test for Lyme was negative. Even though the CDC clearly states, “Lyme disease is diagnosed based on: signs and symptoms, and a history of possible exposure to infected blacklegged ticks,” this physician refused to treat this woman during the critical early phase of infection. This is clearly an example of a lack of physician awareness and education.
The second issue here is that the standard test for Lyme is designed to detect anti-bodies that may take 4-6 weeks for the patient’s immune system to produce. (Borchers 2015) So, while I fault the physician for not knowing about the inaccuracy of the test in the early phase, I also fault the CDC for allowing a faulty test to remain on the market.
To summarize my recommendations:
- Improve physician education and awareness of Lyme and tick-borne diseases at all state and local levels. You might do this by requiring doctors to participate in at least one tick-borne disease continuing medical education (CME) course in order to renew their license.
- Reduce the number of missed diagnosis and misdiagnoses for Lyme and other tick-borne diseases by developing a precise test capable of detecting all pathogens in a single test.
- Improve treatment success rates for patients with late-stage Lyme disease. You may do this by designing clinical trials that use combination antibiotics proven successful in animal models. (Feng 2019)
Thank you for the opportunity to submit comments to the Tick-Borne Disease Working Group (TBDWG). I was an avid viewer of the first eight meetings of the TBDWG and am very happy with the final versions of the sub-committee reports and the Report to Congress. I find them to be some of the most comprehensive accumulations of information regarding tick-borne disease on record.
I look forward to following the second session of the TBDWG and hope that you are able to help implement some of the recommendations as proposed in the first TBDWG Report to Congress.
Lonnie Marcum, PT
California
References:
Aucott JN, Rebman, AW. Crowder, L.A.; Kortte, K.B. (2013) Post-treatment Lyme disease syndrome symptomatology and the impact on life functioning: Is there something here? Qual. Life Res. 2013, 22, 75–84
Bouquet J, et al (2016) Longitudinal Transcriptome Analysis Reveals a Sustained Differential Gene Expression Signature in Patients Treated for Acute Lyme Disease. Am Society Micro. DOI: 10.1128/mBio.00100-16
Borchers A, et al. (2015) Lyme disease: A rigorous review of diagnostic criteria and treatment. J Autoimmun. 2015 Feb;57:82-115. doi: 10.1016/j.jaut.2014.09.004
Cabello FC, Godfrey HP, Bugrysheva JV, Newman SA. (2017) Sleeper cells: the stringent response and persistence in the Borreliella (Borrelia) burgdorferi enzootic cycle. Environ Microbiol 19(10):3846-3862, 2017.
Caskey JR, Embers ME. (2015) Persister Development by Borrelia burgdorferi populations in vitro. Antimicrob Agents Chemother 59(10):6288-6295, 2015.
Centers for Disease Control and Prevention. (2013) Press Release: CDC provides estimate of Americans diagnosed with Lyme disease each year. https://www.cdc.gov/media/releases/2013/p0819-lyme-disease.html
Cook MJ, Puri BK (2016) Commercial test kits for detection of Lyme borreliosis: a meta-analysis of test accuracy. Int’l Journal of General Medicine. https://doi.org/10.2147/IJGM.S122313
Coughlin J, et al. (2018) Imaging glial activation in patients with post-treatment Lyme disease symptoms: a pilot study using [11C]DPA-713 PET. Journal of Neuroinflammation. 201815:346 https://doi.org/10.1186/s12974-018-1381-4
Embers ME, Barthold SW, Borda JT, Bowers L, Doyle L, Hodzic E, Jacobs MB, Hasenkampf NR, Martin DS, Narasimhan S, Phillippi-Falkenstein KM, Purcell JE, Ratterree MS, Philipp MT. (2012) Persistence of Borrelia burgdorferi in rhesus macaques following antibiotic treatment of disseminated infection. PLoS One 7(1):e29914, 2012.
Fallon BA,et al. (2008) A randomized, placebo-controlled trial of repeated iv antibiotic therapy for Lyme encephalopathy. Neurology 2008, 70, 992–1003.
Feng J, Auwaerter PG, Zhang Y. (2015) Drug combinations against Borrelia burgdorferi persisters in vitro: eradication achieved by using daptomycin, cefoperazone and doxycycline. PLoS One 10(3):e0117207, 2015a.
Feng, J, Li T, Yee R, Yuan Y, Bai C, Cai M, Shi W, Embers M, Brayton C, Saeki H, Gabrielson K, Zhang Y. (2019) Stationary Phase Persister/Biofilm Microcolony of Borrelia burgdorferi Causes More Severe Disease in a Mouse Model of Lyme Arthritis: Implications for Understanding Persistence, Post-Treatment Lyme Disease Syndrome (PTLDS), and Treatment Failure. Discov Med 27(148):125-138. http://www.discoverymedicine.com/Jie-Feng/2019/03/persister-biofilm-microcolony-borrelia-burgdorferi-causes-severe-lyme-arthritis-in-mouse-model/
Goswami ND, et al. (2013) The state of infectious diseases clinical trials: A systematic review of clinicaltrials.Gov. PLoS ONE 2013, 8, e77086.
Johnson L, et al (2014) Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey. PeerJ, 2014. 2, e322 DOI: 10.7717/peerj.322.
Johnson, Lorraine (2019): 2019 Chart Book — MyLymeData Registry. (Phase 1 April 27, 2017. Sample 3,903). figshare. Preprint. https://doi.org/10.6084/m9.figshare.7849244
Moutailler S, et al, (2016) Co-infection of Ticks: The Rule Rather Than the Exception.
PLoS Negl Trop Dis. 2016 Mar; 10(3): e0004539. doi: https://dx.doi.org/10.1371%252Fjournal.pntd.0004539"10.1371/journal.pntd.0004539
Novak P, Felsenstein D, Mao C, Octavien NR, Zubcevik N (2019) Association of small fiber neuropathy and post treatment Lyme disease syndrome. PLoS ONE 14(2): e0212222. https://doi.org/10.1371/journal.pone.0212222
Rosenberg R, Lindsey NP, et al. (2018) CDC: MMWR. Vital Signs: Trends in Reported Vectorborne Disease Cases — United States and Territories, 2004–2016. https://www.cdc.gov/mmwr/volumes/67/wr/mm6717e1.htm?s
Schwartz A., Hinckley A., Mead P. et al., (2017) Surveillance for Lyme disease, United States, 2008 – 2015. MMWR Surveill Summ. doi: 10.15585/mmwr.ss6622a1
Tick-Borne Disease Working Group 2018 Report to Congress. Available online: https://www.hhs.gov/sites/default/files/tbdwg-report-to-congress-2018.pdf
Tick-Borne Disease Working Group 2018 Sub-Committee Reports. Available online: https://www.hhs.gov/ash/advisory-committees/tickbornedisease/reports/index.html
Phyllis Mervine
Dr. Eugene Shapiro Should be Removed from the TBDWG
I am writing on behalf of LymeDisease.org to protest the appointment of Eugene Shapiro, MD, to the Tick-Borne Disease Working Group (TBDWG) and to request that he be replaced. We learned of the appointment from the website of the Infectious Diseases Society of America, although HHS has declined to confirm the announcement. [https://www.idsociety.org/idsa-newsletter/may-15-2019/idsa-member-appointed-to-tick-borne-disease-working-group/]
Disrespectful of patients
Dr. Shapiro has long been a spokesperson for the Infectious Diseases Society of America in matters pertaining to Lyme disease and has obvious differences of opinion with the vast majority of patients in our community. However, our objection to Dr. Shapiro goes beyond differences of opinion. What is different about Dr. Shapiro is that he finds it so easy to laugh at patients, belittle them, and minimize their concerns.
At a Grand Rounds at Lucille Packard Children's Hospital (Stanford Medical School) on September 24, 2004, he trivialized patients’ concern about Lyme disease (and incidentally misinformed his audience of doctors), saying, “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.”
He showed disrespect for patients, saying that the problem is worse because “some nut reports he has Lyme disease.” He portrayed parents as foolish and uneducated people who are easily duped by doctors and home infusion companies who are trying to cheat them. He suggested that if a parent insists his/her child has Lyme disease, the doctor should suspect “Munchausen by proxy,” which is a very rare problem that should be diagnosed by a psychiatrist.
In his comments in the Dec 2000 issue of Elle Magazine, he called Lyme disease a “magnet for hypochondriacs,” saying, “People would rather say, ‘I think I have Lyme disease’ than ‘I am getting old and tired.’” Numerous serious studies have shown that chronic Lyme patients suffer from severe health impairments, with one noting that “72.3% reported fair or poor health status, significantly exceeding the 16.3% of the general population reporting fair or poor health. This frequency also significantly exceeds that of other chronic diseases, with congestive heart failure (62%) (Burns et al., 1997) and fibromyalgia (59%) (Wolfe et al., 1997) being the closest in terms of fair or poor health.” (Johnson et al. 2014)
Dr. Shapiro would prefer to call it “Lyme Hysteria,” which he blamed on “patient-advocate groups and augmented by misinformation in the lay press and on the Internet.” His attitude makes him unfit for a position on the TBDWG.
Biased views
Dr. Shapiro dismisses out of hand the concept of “chronic Lyme disease,” casting aspersions on Lyme patients, their treating physicians, and any supporting research they point to. “Fake research,” he calls it. (Shapiro et al, 2017) He has testified in court against Lyme-treating doctors, seeking to get their medical licenses revoked. Clearly, he does not meet the FACA standard that advice provided should be “objective.”
Conflicts of interest
Dr Shapiro’s most recent conflict of interest disclosures may be found in his 2018 article. {Shapiro et al. 2018) He reports consulting for Valneva, a biotech company developing and commercializing vaccines; being a board member of the American Lyme Disease Foundation (ALDF); giving expert testimony for various law firms in malpractice suits related to Lyme disease; receiving personal fees from Nationwide Children’s Hospital and Geisinger Medical Center; and receiving royalties from Up-To-Date.
The selection of Dr. Shapiro, a consultant for the vaccine company currently developing the only Lyme disease vaccine, sends a strong signal of commercially motivated bias. The previous Lyme vaccine was withdrawn, officially for “poor sales,” but even by the developers acknowledged serious problems with it. Valneva’s product is a multivalent OspA vaccine. OspA proved to be the Achilles heel of the recalled vaccine, LYMErix. It goes without saying that a Lyme vaccine is not a panacea, as it does not address the multitude of other tick-borne co-infections: babesiosis, ehrlichiosis, anaplasmosis, etc. Dr. Shapiro has also received speaker’s fees from Merck and Sanofi-Aventis (pharmaceutical companies that develop vaccines). It would be a mistake to rush ahead toward a new vaccine without a deliberate and balanced debate. Dr. Shapiro may not be the right person for an objective discussion.
Dr. Shapiro lists the American Lyme Disease Foundation (ALDF) as one of his “conflicts of interest.” ALDF is an astroturf nonprofit pretending to represent patient interests, while it actually represents a special interest group, specifically, the Infectious Diseases Society of America (IDSA) and its researchers. Four of its board members (including Shapiro) sat on the IDSA Lyme guidelines panel. The ALDF’s chief “public service” is to refer patients to the IDSA Lyme disease treatment guidelines and other IDSA articles. The ALDF’s executive director, Philip Baker, PhD, a former Lyme Program Officer at NIH, is an IDSA apologist and promoter who is a frequent collaborator with Dr. Shapiro and other IDSA members on various papers.
Dr Shapiro also has financial ties to insurance companies, having served as an expert witness in court cases against doctors for treating Lyme disease outside of the IDSA guidelines. He has served as an expert witness in medical-malpractice cases related to Lyme disease; he has reviewed claims of disability related to Lyme disease for Metropolitan Life Insurance Company. He also receives royalties from “Up to Date,” a point-of-care software system used by doctors to look up information about various medical conditions and treatments. (Sort of an online version of the IDSA Lyme guidelines.)
Dr. Shapiro cannot sit on this panel without these conflicts of interest influencing his messages. He does not represent the interests of an independent, truth-seeking researcher, but rather the commercial interests of profit-making companies. As such, he has no place in this Working Group.
Biased guidelines
As a member of the IDSA Lyme guidelines revision panel, Dr. Shapiro was a defendant in the 2006 antitrust investigation of the IDSA by then-Attorney General Richard Blumenthal of Connecticut. The IDSA is a medical specialty society that represents the interests of its members, and the members who deal with Lyme disease are primarily researchers. AG Blumenthal called out the 2006 guidelines panel for “undercutting its credibility by allowing individuals with financial interests—in drug companies, Lyme disease diagnostic tests, patents, and consulting arrangements with insurance companies—to exclude divergent medical evidence and opinion.” The prestigious Institute of Medicine also criticized the panel for its flawed process. HHS should not make the same mistake.
The IDSA guidelines leave many patients chronically ill yet Dr. Shapiro is a strong supporter of them. Most patients do not trust the IDSA and do not want to be treated according to the IDSA guidelines. Yet the IDSA guidelines are influential and are used by state medical boards in disciplinary proceedings against nonconforming physicians and by insurers to deny essential care to patients. This has a chilling effect on the willingness of doctors to stray from the IDSA guidelines or even to accept people with chronic Lyme disease as patients.
Lack of trust
Dr. Shapiro repeats the IDSA dogma that there is no objective evidence that chronic Lyme disease exists and trivializes the effect of the illness on patients. He is likely to be a lightning rod for controversy and his continued presence on the Working Group will undermine all efforts to gain the public trust. Currently, he is a named defendant in Torrey v. IDSA et al, a federal lawsuit filed by a group of Lyme patients. It charges the guidelines authors and eight insurance companies with conspiring to deny medical care to Lyme disease patients.
To sum up, LymeDisease.org speaks for a large community of patients in requesting that you remove Dr. Shapiro from the Working Group. We urge you to replace him with someone less biased and with fewer financial conflicts of interest. We advance three nominees to replace his position: [redacted] and Dr. Sam Donta. We believe materials on these individuals has already been forwarded to you as part of the nomination process.
Our petition on Change.org to remove him from the TBDWG has garnered close to 17,000 signatures in fewer than 10 days. [https://www.change.org/p/tick-borne-disease-working-group-keep-eugene-shapiro-off-the-federal-tbdwg] If HHS expects patients to respect the serious work of the TBDWG they should not appoint Dr. Shapiro.
Phyllis Mervine
Founder and President of LymeDisease.org
Sources:
Asher T. Unprecedented Antitrust Investigation into the Lyme Disease Treatment Guidelines Development Process. Gonzaga Law Rev. 2011 Jan;46(1):117-145. Available from: https://www.law.gonzaga.edu/law-review/files/2011/01/Asher.pdf
Institute of Medicine, Committee on Lyme Disease and Other Tick-Borne Diseases: The State of the Science Board on Population Health and Public Health Practice. Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report. 2011. Available from: https://www.nap.edu/read/13134/chapter/1#ii
Johnson L, Stricker RB. Attorney General forces Infectious Diseases Society of America to redo Lyme guidelines due to flawed development process. J Med Ethics. 2009 May;35(5):283-8. Available from: http://www.ncbi.nlm.nih.gov/pubmed/19407031 http://jme.bmj.com/content/35/5/283.
Johnson L, Wilcox S, Mankoff J, Stricker. Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey. PeerJ. 2014; 2: e322. Published online 2014 Mar 27. doi: 10.7717/peerj.322. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3976119/
Nigrovic LE, Thompson KM. The Lyme vaccine: a cautionary tale. Epidemiol Infect. 2007 Jan; 135(1): 1–8. Published online 2006 Aug 8. doi: 10.1017/S0950268806007096 Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2870557/
Pfeiffer MB. Chronic Lyme disease: Is it real? Poughkeepsie Journal, 05/19/2013. Available from: http://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2016/06/24/archive-chronic-lyme-disease-real/86349798/
Shapiro ED, Baker PJ, Wormser GP. False and Misleading Information About Lyme Disease. Am J Med.2017 July;130(7):771–772. Available at: https://www.amjmed.com/article/S0002-9343(17)30138-9/fulltext
Shapiro ED, Gerber MA. Lyme disease: fact versus fiction. Pediatr Ann. 2002 Mar;31(3):170-7.
Shapiro ED, Wormser GP. Lyme Disease in 2018. What Is New (and What Is Not). JAMA. 2018;320(7):635-636. doi:10.1001/jama.2018.10974 Available at: https://jamanetwork.com/journals/jama/article-abstract/2696480
Wormser GP, Shapiro ED, Strle F. Studies that report unexpected positive blood cultures for Lyme borrelia—are they valid? Diagn Microbiol Infect Dis. 2017 Nov;89(3):178-81. Available at: http://www.ncbi.nlm.nih.gov/pubmed/28918069
J.M.
Please give more funding to tick illnesses. In July 2018, I contracted RMSF. (ROCKY MOUNTAIN SPOTTED FEVER). I didn't think I'd live. I went to my doctor 3x, hospital 2x. NO ONE had a clue. My daughter had to Google my symptoms and we requested a blood test. And it was awful.
Please! Please! Please! More money and education is needed. I still suffer one year later and the doctors have no clue what to do.
Thank you.
Crystal Norton
I have submitted my comments in the past anonymously, and am writing again since there has been no change in my reactions.
I have alpha-gal allergy syndrome, and it has changed my life. I once could go to any restaurant, and now only 3 or 4 in my county has anything I can eat. From those restaurants, maybe a few items on the menu. I can never try other foods. I can no longer have any dairy, along with the mammal meats, after receiving additional tick bites in 2017. Wendy's used to be a safe place to find foods when I needed a quick bite. They recently added "onion tanglers" and since they fry in the same oil I can no longer have any of the fried chicken, or fries, which were my go to items. I can also not have the grilled chicken because it has carrageenan. Carrageenan has the same molecular structure as alpha-gal and I will react to it as well.
I cannot visit family when they are cooking beef or pork or heating up dairy, such as oyster stew or grilled cheese sandwiches. My dog, also has to be on an alpha-gal diet so I won't react to him. My household follows an alpha-gal free diet as well, because it would cause major issues for me if I were to smell it. It is safe to say my children are tired of poultry.
I can control some of these aspects. I can manage. I bring my own drink everywhere because white sugar in sweet tea at restaurants has been filtered through bone char. Sodas aggravate my now sensitive system. What I cannot control are the smells.
This past weekend a few of my neighbors were grilling. I live in an apartment complex. I was walking my dog and although initially did not notice the grills I began coughing. I recognized that type of cough so I looked around. Yes, there were grills and smoke coming from the grills. Someone had just opened the grill lid and the smoke wafted my way. I began getting dizzy and had to run back inside. I know what happens if I am around the smoke too long or too closely. A year ago, my direct neighbor had his grill in the front of our apartment doors. I had to walk my dog and walked twice through that smoke in and out of my door. I went back inside and my head hurt. I became dizzy. Tired. My blood pressure dropped and I passed out. My dog sensed something was wrong and barked and growled at me until I woke up. It affected me so badly that I could not think straight to call for help, or to use an epi-pen. I was too weak to get up and stand. This lasted for a few hours. It affected my thought processes as well.
I experience airborne reactions often, and the reactions can be scary. Once, before leaving work, someone brought in still steaming deconstructed tacos, which of course included beef. We talked for a few minutes. Suddenly, I began to stammer my words. I also began to lose balance and stumble over my own feet. I became dizzy. I was nauseated and getting a headache. I had to leave to go home. On the way home I noticed additional signs-- slower thought processing, slower reaction times, panic to get to safety. Once home all of the symptoms continued. They lasted many hours. Then the extreme fatigue set in which usually indicates a blood pressure drop. Then, later that night, a migraine. The fatigue affected me for days. The migraines usually last one or two (but have been up to 3 days with no relief due to ingesting mammal or longer airborne exposures). This affects my home life. How can I take care of my children and dog when I am so out of it, so fatigued? I've been so weak I could barely manage to walk. How is this JUST an allergy? It affects everything.
I cannot control being in public and someone is wearing a strong perfume, or being at work or in public and there are air fresheners, plug-ins, candles, etc. Going grocery shopping and the bakery and deli are cooking. The open airport restaurants during my last flight were a nightmare. Then, the flight itself! How does a person with alpha-gal, who suffers from airborne reactions, stay safe in an airplane with many people who can bring their own foods on board? Or imagine if the flight serves warm food?
Christmas. I could not completely even enjoy Christmas dinner with my family. I DID bring my own food. I brought my own drink also. I only ate alpha-gal safe food. But the smell of the other food caused reactions for days.
Yesterday I was around McDonald's food and suffered from the most intense headache and fatigue ALL day. Even driving down the road and having to drive slow or stop near a Cook Out or Burger King will cause reactions. People think I am crazy. They don't believe this. This is REAL. Very real. Very scary. There is no treatment. The masks don't help. I am afraid of ending up in the hospital and no one knowing how to handle alpha-gal or what safe medications to use.
I volunteer at the animal adoption center. After being there for an hour the headache and fatigue reaction will come on hours later. It lasts quite awhile.
I have also found 4 Lone Star ticks in the last week. One just today on my leg. I was at work. I am afraid if had bitten me how it would affect my reactions. I have apparently had alpha-gal for years but with mild symptoms. The additional bites in 2017 ramped up my reactions to include dairy and airborne reactions only a week after the bites. We cannot avoid fumes and cannot avoid ticks in this area, and even tallow is in many fast food chicken restaurants' grease (which is dangerous because people with alpha-gal are just told to "avoid red meats" so that is ANOTHER danger) so we have even fewer food choices than people assume, and we are quickly...very, very quickly, losing this battle.
This is also NOT just an allergy.
Since alpha-gal: I am fatigued. I have lost a lot of hair. I have lost contact with friends and have been excluded from invites from friends and family. I am weak. I deal with constant worry because of alpha-gal. I have experienced depression from it.
During airborne reactions it actually changes my mental state and moods. I notice it happening, but cannot stop it. It is the body responding to the chaos that happens during histamine increases.
I have noticed changes in eyesight and eye health. I have to lock myself in my own home when my neighbors grill. My intestinal system can barely handle certain foods or drinks anymore. I fear the long-term effects of alpha-gal and also the effects the constant antihistamine will cause.
I also fear that many doctors and allergists don't think dairy can become an issue, not to mention airborne reactivity! From my experiences, many truly don't. This is a dangerous lack of information and research.
But again, either the ticks will win, or the airborne exposures will win, or the wrong food will win because this is a fight we are quickly losing. We need help.
Thank you.
Crystal Norton
Burlington, NC
Deborah Olsen
Tickborne Disease Working Group,
My letter will hopefully be short and to the point.
I have alpha gal. I have many of the same ailments as those with Lyme disease plus the bonus of anaphylaxis from eating food items that are not labeled properly or have been cross contaminated.
Eliminating mammal derived ingredients is an overwhelming experience, especially when you contact so many companies to check on ingredients on their food products. Why can’t there be a common sense bill presented to the House, Senate and then to congress proposing a Full Disclosure of all ingredients and origins where they were derived from on every label? Why shouldn’t every American have the right to know exactly what is in the food we are eating?
Epinephrine shortage!!! What’s being done about this??? We require Epinephrine to save our lives in case of an Alpha Gal flare up and there is still a shortage of this medication....WHY?? And when will this be resolved??
Research for Alpha Gal. I want to know why this is not happening. Why is the lone star tick not being researched just as much as the Black Legged Tick or DogTick?? Why are we somehow developing this allergy to meat via the Lone Star Tick?
Alpha Gal testing is Not included in any Tickborne Disease Testing Panels. I would like to see Alpha Gal being tested more after someone has been bitten. I would also like to see a lab where we could send in our ticks and have them tested for Alpha Gal. Currently there aren’t any.
Why are people who have been diagnosed with Alpha Gal being refused doxycycline treatment after the tick bite? Lone star ticks carry other pathogens. We need to be treated with Doxycycline on the onset of the tick bite.
These are just a few of my concerns. Again, thank you for all you do.
Deborah Olsen
Delaware
Jennifer Platt
To: U.S. Tick-Borne Disease Working Group
1. As summarized by author Kris Newby, “The myopic focus on only one of the tick diseases, Lyme disease, has led to treatment delays and fatalities in patients with serious mixed infections.” Especially in the southern United States, untold numbers of people continue to suffer from under-diagnosed, misdiagnosed and untreated “other” tick-borne conditions such as the rickettsias and ehrlichiosis. We strongly urge the TBDWG in its next report to Congress to place an increased emphasis on the myriad “other” conditions that do not yet receive the attention needed to reduce the morbidity and mortality impacts upon the American population.
2. We’d like to thank the CDC for adding a Q&A section on Alpha-gal “Allergy” to their website https://www.cdc.gov/ticks/alpha-gal/index.html. Several urgent important updates are needed to bring the page into alignment with current research and knowledge. First and foremost, the medically accepted terminology is now “Alpha-gal Syndrome” (AGS for short); almost every major journal publication since 2017 has used the term “Syndrome” versus “Allergy”. Please refer to other current information on AGS on the Mayo Clinic’s website at https://www.mayoclinic.org/diseases-conditions/alpha-gal-syndrome/symptoms-causes/syc-20428608.
Other examples include the extremely misleading and even appallingly inaccurate statement, “most cases of alpha-gal allergy appear to be in people >50 years of age” (note that no citation is provided for this claim). We strongly encourage the TBDWG to work with the CDC to ensure that the latest research findings are utilized and shared.
3. With regards to AGS, an urgent need exists to conduct research and document impacts on people who have anaphylaxis from airborne exposures to mammalian products. Far too many patients diagnosed with AGS are told by their healthcare providers that fume reactions “couldn’t possibly happen” and subsequently disregarded. We know AGS patients who experience significant repercussions in their daily work environments. We need the TBDWG to support funding to further document airborne-related repercussions of responses to alpha-gal.
4. Black-legged tick salivary glands found to contain alpha-gal in first of its kind study: implications for the future. In the United States the Lone star tick Amblyomma americanum has been associated with delayed anaphylaxis reaction to mammalian meat and products due to the presence of the carbohydrate galactose-α-1, 3-galactose (αlpha-gal). New research confirms the presence of alpha-gal in the Lone star tick’s saliva independent of feeding on a mammal. Research also reveals the presence of alpha-gal in the saliva and salivary glands of the black-legged tick Ixodes scapularis. While the black-legged tick (heavily concentrated in the northeastern US) is known primarily for transmitting the bacteria that cause Lyme disease, the discovery that it may also transmit alpha-gal has important implications for the diagnosis and treatment of patients with Lyme and other tick-borne diseases throughout the US.
In a recent study led by Shahim Karid at the University of Mississippi, researchers discovered that both the Lone star tick (Am. americanum) and the black-legged tick (Ix. scapularis) contained alpha-gal in their saliva and salivary glands. Two other tick species, the Gulf-Coast tick (Am. maculatum) and the American dog tick (Dermacentor variabilis) were found to not harbor the alpha-gal carbohydrate.
To determine the source of the alpha-gal (i.e. are the ticks transferring alpha-gal due to feeding on lower mammals such as deer) the authors used human blood to investigate the means of transmission. As stated, “The results support the argument that alpha-gal is being synthesized by the tick via a so far unknown mechanism.” Whatever the mechanism, some people bitten by a tick containing alpha-gal will develop “Alpha-gal Syndrome” (AGS), a sensitivity to mammalian-derived foods, products, and medications that contain alpha-gal.
Alpha-gal Syndrome often does not fall on the radar of healthcare professionals because it is relatively unknown, misunderstood, and considered by many to be “merely” an allergy (symptoms range from mild e.g. hives to severe e.g. anaphylaxis). However, what many people do not realize is that – similar to Lyme disease – some patients experience far reaching and life altering consequences. In fact, I often refers to AGS as “Lyme 2.0” because so many similarities exist between the two conditions.
Stories abound of incorrect diagnoses and lack of awareness about AGS. As such, an urgent need exists to educate health care providers and others about AGS and its implications. Further, the startling discovery that the black-legged tick also can carry alpha-gal significantly impacts how to diagnose and treat patients who present with the myriad symptoms that overlap with Lyme. In addition to the obvious avoidance of red meats, patients with AGS must be careful to avoid medications that include mammalian ingredients such as some gelcaps (which can be either vegetable or animal-derived). Lyme patients who unknowingly suffer from AGS and are being treated with medications could inadvertently experience painful consequences. The potential public health implications of incorrect diagnoses are startling, and much additional research is needed.
Thank you,
Jennifer Platt, DrPH
Co-Founder Tick-borne Conditions United
Pittsboro NC
E.S.
I suffer from Alpha-Gal and have for about a decade.
I think the CDC needs to get a hand on how prevalent ALL tick based diseases and Alpha-Gal are. I believe you should direct that the CDC make any and all medical issues originating from ticks be reported to them on a mandatory basis. This will at least start to identify what we are dealing with. This should be a relatively low cost start to a solution.
To assist Alpha-Gal suffers, I also believe that Congress needs to direct that something be done about product labeling. It is time to overhaul the Food Allergen Labeling and Consumer Protection Act (FALCPA). 100% of ingredients need to be identified on labels for ALL consumer products - food, health and beauty, and most importantly all drugs. Everything needs to be labeled and needs to be accurately labeled including sources for multi-source ingredients. This is important to Alpha-gal sufferers but also would benefit anyone with any allergies. In this day and age it is time to stop bit-piece solutions. Human beings can be allergic to anything and deserve the same protection as those with the (supposed) top 8 allergens.
E.S.
Virginia
