This webpage displays the written comments received by the Tick-Borne Disease Working Group for the April 2022 meeting. The opinions expressed in each comment displayed on this webpage belong solely to the author of the comment and do not necessarily reflect the opinions of the Department of Health and Human Services (HHS) or the Tick-Borne Disease Working Group. Any information provided in the comments displayed on this page has not been verified by HHS.
Anonymous 1
Fund the research for hyperbaric oxygen treatment for borreliosis. (no patent, no funding?)
Fund the "valley of death" diagnostics research and development that Dr Embers mentioned in the last meeting.
Fund research on nonpatentable natural treatments (no followup to John Hopkins research by Dr Zhang on carvacrol and other substances? or his bartonella research?)).
Fund the nematode research per Betty Gordon's comment regarding Dr Burgdorfers note of findings.
Lastly, re Dr Dixons comment last meeting that Lyme patients should try "wellness", lol, please note that Medicare does not even cover vitamin D tests. It cost me a fortune to find that out, as the lab charged me full market price. (is the standard of care for borreliosis, no hyper patentable drug/device, no coverage?)
Anonymous in Illinois
Our son had Lyme when he was 5 years old. He was given amoxicillin. Fast forward 17 years later. Out of the blue he started having troubles with anxiety, directions to places he used to know, personality changes, ocd, no concept of time, became isolated, stopped talking and eating and a dozen other symptoms. He went to the emergency room and was given a spinal tap and mri w/contrast. Labs and tests were normal. The episode lasted several months but slowly he started getting better. 4 years later, the same thing happened abruptly. We took him to the emergency room. The neurologists said he saw inflammation but once admitted another neurologist said she did not see inflammation. He had many tests and labs, all normal. This time it didn't go away slowly. He met with a neurologist, psychiatrist, hematologist, allergist, and others trying to figure out what was wrong. Covid hit and it was difficult and risky to take him. When covid lifted by now 2 years in, we took him to another doctor and described all his bouts of symptoms over the past 10 years. She tested him for Lyme, malnutrition and Aluminum. He was diagnosed with malnutrition, CDC Lyme and very high levels of aluminum in serum. She gave him antibiotics for a couple months. We took him to a kidney specialist to see why aluminum was so high. His kidneys are functioning normal. We took him to an infectious disease doctor who went over all his records. He said he has Lyme encephalitis all these years. He said since recent IGM testing turned IG, there is no active infection. Doctor said to treat the symptoms. He is seeing a psychiatrist and has an appointment coming up with a neurologist. Problem is he can't live independently and hasn't for many years. It took so many years and many doctors who didn't recognize the symptoms to even test. Only a single doctor out of a dozen recognized the symptoms and he tested positive. I have concerns if the original bite waxed and waned, but he was able to deal with it until perhaps another bite which made him exponentially worse. This illness has consumed our entire family for years and we are no closer to wellness because damage was done by taking so long to diagnose and treatment has a lot of holes and after many months, since diagnosed, brought little improvement. Our son and family are devastated and heartbroken. We never had aluminum in our house, products, medications so it must have come from water or vaccines, we just don't know. There are concerns with such high levels in combination with lyme, autoinflammation and autoimmunity in the brain. We are still weeks out from meeting with a neurologist and have concerns that little can be done. Every part of the process is slow while his brain is on fire. We have been completely helpless to find ways to ease any of it despite reaching out and doing everything right. He is suffering from malnutrition, but the part of his brain needed to eat right and take supplements is not working. We just learned of alpha gal syndrome and are waiting for results. There has to be more awareness, better testing and follow up testing to see if there is waxing and waning. We need treatments for aluminum and heavy metals that likely react to Lyme. Every day he goes without neuroplasticity rehab and fixing deficiencies through infusion because he won't take them orally, recovery seems further out of reach. When we research there are such discrepancies within those with empirical knowledge and also infectious disease and cdc guidelines. We need help and we needed it yesterday. Absence of evidence is not evidence of absence. If there are treatments out there, especially those that are cheap and little risk that may work, we need them now. Please make nutrition, herbal medications, hbot, neuroplasticity rehab and other viable treatments available and paid for by insurance. So much time has been lost and more still to come.
Anonymous 3
My name is [REDACTED] in the fall of 2012 I started having neurological issues that seemed to get worse and worse. I ended up in the hospital where they did a bunch of testing including lyme meningitis and scans. Testing came back all negative.
In February of 2013 I was admitted to New England Rehab because my balance was so bad and I had difficulty talking. My diagnosis for admitting was Conversion Disorder because they Drs couldn't figure out what was wrong so they decided it was all in my head.
Please keep in mind that Powassan was fairly new at this time and only one lab in the US was able to do the testing. As well as most people that were diagnosed were diagnosed after they passed.
I was inpatient Rehab for almost a most then discharged to out patient. I was not much better.
My family and I tried everything to help me get better and through lots of research led us to seek out a Lyme Literate Dr. I went through alot of testing as well as treatment plans.
In the summer of 2013 my daughter and I signed up for a Vector Bourne Study because we had both been bitten by ticks. We both had our blood drawn and sent out.
I recieved a call stating that I tested positive for the Powassan Virus (deer tick virus) however because I wasn't showing signs I wasn't considered CDC Positive. I was not deathly sick at the time of testing however had major neurological issues.
Between Rehab and the Vector Study I had to apply for SSI because I was unable to work and was granted SS on the first try.
The Dr. that met with me and did my SS evaluation made many comments that there was no way I was going to be denied and how sorry he was that I was as sick as I was.
2015 I started having more migraines, dizziness and balance issues again. I had moved from Maine to NC so I sought out a new Neurologist. Went through all the testing and Scans.
September 2015 I was diagnosed with a brain tumor in my 4th ventricle. I was immediately set up with a neurosurgeon.
At 38yrs old I was told to get all my papers in order that I need brain surgery as soon as possible because of the location.
Did I get a brain tumor from having the Powassan Virus? Are they some how related? I can not get a straight answer from anyone.
I've asked the CDC, my oncologist and neurologist no one can give me an answer.
My Oncology Neurologist took the diagnosis of Conversion Disorder off my charts that she has control over. She also states that I am her only patient that has had both Powassan and a brain tumor and survived. She tells me I'm a miracle.
I'm a complicated patient to take care of medical wise by all my Drs and specialists because they don't know if some of my issues are from Powassan, brain tumor.
There needs to be more research and testing done on the Powassan Virus.
Also anyone who is tested for Powassan and has a positive test regardless if they have symptoms at the time should be considered CDC Positive and recorded as so.
Us patients should be followed up on and closely monitored.
My name is [REDACTED], I was bite in 2012 by a tick in Arundel, Maine! My life will never be the same.
Andrea Jackson
Greely, CO
1. Federal Congressional Investigation: Patients have been calling for and still demand a federal congressional investigation into the corruption of Lyme Disease medicine. Close to 100,000 people have signed Carl Tuttle’s petition calling for such an investigation. Conflicts of interest in Lyme Disease medicine were identified 20 years ago by the Lyme Disease Association. Neither that document or the petition has gotten the federal government to investigate and stop the corruption of Lyme Disease medicine. Patients plead with the TBDWG and their federal representatives to call for a federal congressional investigation into the corruption of Lyme Disease medicine.
2. Transparency and FACA-required– searchable database: Patients have repeatedly inquired as to why the TBDWG has not (in 5 years now) provided the TBDWG FACA-required– searchable database. The TBDWG website itself documents they are required to provide this searchable database. Patients want the TBDWG to finally be transparent like they claim to be and to provide them with the database and all the documents and information it should contain.
3. Manipulation of the TBDWG (for the 3rd time): Patients are well aware and want Congress to be aware that the federal TBDWG members and the HHS Secretary and Assistant Secretary again put an anti-Lyme propagandist onto the TBDWG (and this time, also as a co-lead for the treatment subcommittee) to control the TBDWG vote and what information is put into the TBDWG 2022 Report to Congress. This year, the federal representatives and HHS leadership controls the vote and Lyme information by appointing Sunil Sood just as they appointed Wormser and then Shapiro in past years. 38,000 patients, who had advanced warning of his appointment that year asked that Shapiro not be appointed (we did not have advanced warning this year, even though we repeatedly asked who they would use to control and manipulate the TBDWG this year). Those 38,000 patients were ignored.
4. Federal PR about “Listening to patients” are lies: Patients want Congress to be notified that the TBDWB feds and HHS Secretary and Assistant Secretary ignored 38,000 patients asking they not appoint Shapiro to the TBDWG (to control the TBDWG vote) and followed that action up by then appointing Sood for the same purpose. The feds of the last TBDWG repeatedly claimed that professional Lyme Patient Registries were of no value. And so far, all the TBDWG groups have ignored patient and caregiver comments or whitewashed and disguised their meaning in flowery interpretations.
5. The CDC Lyme Disease Test results, and has resulted for 3 DECADES in 71% false negatives at best. Patients want it documented that Bay Area Lyme Disease Foundation found in 2020 that the CDC Lyme Disease test resulted in 71% false negatives (at best, it is expected that the number of false negatives from those who do not learn they have Lyme early after exposure and adequately treat the Lyme and Co-infections, the CDC Lyme test would result in a great many more false negatives.) The 2021 TBDWG ignored this study, which showed that federal representatives have been gaslighting Lyme patients for 30 years, given the CDC Lyme test does not work and ENSURES hundreds of thousands or more are unable to learn they have Lyme Disease and then they develop serious illness.
6. Patients want it documented that the CDC has ensured that no new accurate and valid Lyme Disease test will be validated and approved. If the 71%-false-negatives CDC test is used to validate new Lyme tests, the new tests will be said to have too many false positives because the CDC Lyme test fails to identify a great many cases. The CDC has also created a CDC Lyme Serum that is from only the cases that do not have very serious Lyme outcomes. If the CDC serum is used to validate (or “un-validate”) new tests, this too will make it appear the new tests have false positives when that is not the case. The validation of Lyme Disease tests using the CDC Lyme test or Lyme serum ensures no future accurate and valid Lyme test will ever be approved.
7. The manipulation of the TBDWG vote ensures the same absurd and false logic given by the TBDWG federal representatives will again be used to keep Lyme Disease medicine from evolving (and past deeds from being made apparent). The excuse that doctors would be confused if presented with accurate information about long-term Lyme Disease (illness and symptoms), is an absurd argument, but one, that the federal representatives and HHS leaders have ensured will again be used to make it so the CDC’s 30 YEARS of misinforming doctors will not be rectified. For 30 years, the CDC has told doctors not to test patients unless they had a bullseye rash and/or live in the Northeastern United States and if doctors did test patients, they must use the CDC’s 71% false negatives Lyme test. The CDC also told them that Lyme was rare, easy to cure, and no big deal. That the single CDC 5-antibody Lyme tests would result in false negatives was known in the late 80s and early 90s. Also known was that Lyme Disease results in very serious neurological, immune, and neuro-immune illness and disability. Patients want to inform Congress that the federal TBDWG representatives and HHS leaders use absurd logic such as ‘it will confuse doctors to tell them the truth’ and get away with it because they always appoint a “public” member to the TBDWG that is a well-known (and despised) anti-Long-Lyme protagonist that will stack the vote in favor of those who want to keep disclosure from occurring and Lyme medicine from progressing.
8. The advancement of Lyme medicine does not occur because key personnel in the federal agencies use their positions to keep it from advancing. These key personnel do things like appointing a well-known (and despised) anti-long-Lyme-r (and anti-actual science- (patients have repeatedly referenced hundreds of peer reviewed studies these key personnel continue to deny even exist)) to control the vote of the TBDWG and the information that the working group will put into the TBDWG report to Congress while then proclaiming they are working for the benefit of Lyme patients and medicine. The federal health agencies use tactics like the above and like their ensuring no accurate and valid Lyme test will ever be validated while claiming they are working for “the tipping point of Lyme.” A few federal representatives may be working for Lyme medicine to finally be allowed to progress, but those federal representatives that have been working to ensure it does not progress are the ones that control the federal stance on Lyme Disease. Patients are well aware that any PR about things such as 1.Lyme medicine is finally being allowed to progress or 2. the federal agencies are going to involve patients to improve Lyme medicine - are just PR tactics as all federal Lyme Disease medicine programs are being manipulated by federal representatives who have ensured for DECADES that Lyme medicine does not progress.
9. Patients invite the “feds” to Debate Our Scientists and Experts! Patients want the federal employees that the TBDWG federal representatives always cite as not believing that Lyme Disease results in long-term consequences or those representatives that continue to cite studies proven to be so flawed that their conclusions-reached are false, debate “our” credentialed scientists and experts.
Brenda Elliott
Bidwell, Ohio
I lived in Middle Tennessee from 1997 until 2019. I contracted Alpha Gal Syndrome, confirmed by blood test, over 8 years ago while there. Many Lone Star ticks on my property there.. A few anaphylaxis reactions and hospital stays. Moved to Ohio in 2019. Most doctors have no, or limited, knowledge of Alpha Gal. Restaurants have no clue. Eating out is a nightmare then after breaking out in a rash or diarrhea and vomiting, it is blown off as contact dermatitis and a "bug." I have no idea what the answer is and appreciate your time. I would LOVE seeing "AG Safe" labels on foods in stores. Our battle: buy turkey sausage to find it was put in pork casings. Added beef juice to foods for flavor. I went to a Oriental restaurant wanting rice and orange chicken. Found out they put pork juice in the rice for flavor.
Educate our society, doctors and restaurants that this is a real problem. Many people react differently and we are not taken seriously.
Thank you for your time. I prefer not to talk because I may not be available (illness/cancer in the family).
Thank you,
Brenda Elliott
Caroline
To the members of the Tick Borne Disease Working Group,
My name is Caroline and I am 25 years old. I grew up my entire life in Pennsylvania before moving to North Carolina after graduating from Temple University with a degree in Risk Management and Insurance in 2019. Most people who knew me in college had no idea I was struggling so much with my health, and that was no accident. By then I’d had years of experience pushing through symptoms and putting on a good face.
In 2005, I was 9 years old. I loved to play with the other girls who lived on my street, I was a good student, I loved to read. I was a captain every year on our “reading olympics” team because I read so much. I was normal, until I wasn’t.
My family just describes it as “the stomach flu” that I caught one day and it managed to flip my world upside down. Overnight, I suddenly was unable to keep any food down. I was terrified of getting sick, terrified of leaving my “safe” environment in case that happened. I suffered from horrifying, debilitating panic attacks. I had panic attacks at the thought of leaving the house, at talking to my friends, at some points even from leaving my bedroom. I was trapped in my own mind and terrified of everything, leaving me unable to leave the house for almost a year and missing out on school and all of my life activities.
My parents tried to help, but they didn’t know what to do with me. One doctor suggested a food allergy. They tried restricting my already limited diet. We kept accidentally exposing me to foods that had dairy hidden in it, just feeding my fears further. They would be so excited to find me something that I could eat and that I would be willing to, only to be crushed and remorseful later when I ended up deathly sick on the bathroom floor. I cannot imagine the pain and guilt they must have felt from just trying to help me. I kept losing more and more weight, almost being hospitalized as I turned to skin and bones.
Most of that time in my life is so traumatic, I have blocked it out. However, there are a few moments that will stick with me forever.
● Laying on the floor of our upstairs bathroom, the small blue tiles on the wall swimming around me, the overwhelming feeling that I was going to die suffocating me as my parents pounded on the door that I needed to go back downstairs to work with the tutor the school sent so I wouldn’t be labeled as truant and fail the 3rd grade.
-Passing out in a public bathroom and having to beg a random woman to go find my mom to come get me, and her having to climb under the stall door because I was too weak to stand up and open the latch.
-My dad physically dragging me into the elementary school, screaming at the top of my lungs and in a full blown panic attack.
-The white plastic trash bin I carried around with me everywhere for months because I would vomit up almost everything I ate.
The thing that I remember the most is all the whispering. The hushed tones, the sideways looks, the unsaid message that whatever I was doing, I needed to knock it off. I was doing something wrong and it was unacceptable. It didn’t matter that I was terrified. It didn’t matter that all the neurons in my body were firing at once and telling me I was going to die as soon as I ventured too far from my safe space. I needed to try harder to eat the foods they gave me, go back to school, stop causing so many issues with my anxiety.
I may have been a kid, but the message was beyond clear: no one was going to help me. No one believed me.
So what options do you have left? I can’t tell you what got “better” because I don’t think anything ever did. I learned that no one was going to listen or help me, and I adapted to my new normal.
As I grew up I did everything I could to hide from the people around me how I was feeling, because I never received a positive response. Gym teachers told me I was being dramatic when I would almost faint from a 5 minute warm up jog. My doctors told me joint pain that was so bad I couldn’t walk was normal growing pains. Every symptom I ever had, someone had an explanation for or looked at me like I was making an issue when I didn’t deserve to.
In high school, I couldn’t get certified in CPR because I wasn’t able to keep doing the compressions for the few minutes required without getting too lightheaded. I had to plan to be absent on days when we would do long runs like the mile or the pacers test in gym class. It was beyond humiliating. Trying to maintain the image of “normal” was exhausting, embarrassing, and defeating. I felt like something was wrong with me – why was everything so incredibly hard?
But every time I looked for help I was told I was asking for too much or it was in my head. I learned to stop asking.
I got into a cycle with my health where I would have to ignore issues until they became overwhelming then I would have to seek out care. Seeking out care was frequently so dehumanizing and exhausting that I would be given the runaround for a couple of months until I just gave up, and so on for years. Not only is seeing all of these specialists and completing these tests time consuming and expensive, it is physically and emotionally draining, especially when you are continually told nothing is wrong with you.
Medical Tests I have undergone: Multiple MRI’s, Facial and neck CT scans, Sleep study, Pulmonary function testing, Lab work (x1000), Tilt table test, 24 hour holter test, EKG, EEG, HIDA Scan, Gastric emptying test, Neuropsychiatric testing, Echocardiogram
Specialties I have seen: rheumatology, neurology, cardiology, psychiatry, allergy and immunology, dermatology, ENT, OB/GYN, neuro ophthalmology, orthopedic
I went undiagnosed until the age of 23. Despite years of unexplainable symptoms that frequently debilitated me and landed me in the ER more than once, it took 15 years for anyone to even order me a test. It took my symptoms progressing to the point that I could barely stand up without passing out and my memory loss being so severe that I would get to the end of the day and have no recollection of what happened for anyone to even bother ordering it, and still I was told I was faking.
Even once the test was ordered, the stringent criteria from the CDC requiring 5 bands on the Western Blot to be positive still left me in a gray area. The hospital called me weeks later to tell me my test was “not positive, but not exactly negative” with no guidance on what to do about that. I had to research and learn that researchers and lyme specialists believe that certain bands (23, 31, 34, 39 and 93) are more specific and that anyone with any of these bands who is exhibiting symptoms should be treated. Every single answer I have found about my health, I fought for and discovered on my own.
Alongside Borrelia burgdorferi (commonly known as lyme disease), I have also been diagnosed with associated tick borne infections of babesia, bartonella, and mycoplasma. It is extremely common for patients to be infected with multiple pathogens, yet the coinfections are rarely recognized within the medical community for how common and also how debilitating they are.
I struggle every day with more symptoms than I am able to name. Debilitating regional pain in my ankles, knees, and hips that leaves me unable to walk some days. Nausea to the point I lost 35 pounds in a year and dropped to 95 lbs, so underweight I stopped getting my period. I had to have my gallbladder removed because the disease had eaten at it and caused it to become so inflamed. Headaches, jaw pain, eye problems, mood instability, panic attacks, OCD like behavior, and PTSD from the way I have been treated within the medical system.
The disease has spread to my brain, causing severe memory loss, brain fog, failure to recall words, confusion, executive functioning issues, and disorientation. I used to be able to stand in front of a room of 500 students and ask the president of a fortune 500 company a question about what kind of innovations they are up to and be told that they were impressed with what I had to say. Now, it has taken me over a month just to pull my thoughts together and send you this document.
This list is not all inclusive.
The disease has progressed so far to a late neurological stage that I am now undergoing intense IV therapy in order to try to get better. This requires me to have a PICC line put into my chest and to do IV infusions every day at home for 9-12 months. This is not an easy treatment, and has plenty of risks associated with it. Not a dollar is covered by insurance.
I have spent hundreds of thousands of dollars on medical costs throughout the years. I am now unable to work and had to leave my first full time job out of college. I have to pay for a treatment that will cost well upwards of $70,000 and insurance will not cover any of it due to public health officials like the IDSA panel accepting bribes as consultants. I have had more than $15,000 in out of pocket medical costs in the last MONTH. My insurance was billed almost $65,000 this year for costs not directly related to my lyme treatment, and I am paralyzed by the knowledge that if my job fires me while on disability leave I will die from not being able to afford those costs. All other alternative treatments are just as costly and therefore inaccessible.
My dad, who is 65 years old and getting ready to retire, has now had to refinance his house so that his 25 year old daughter does not either have to go into bankruptcy from medical debt or suffer permanent brain damage from this disease continuing to go untreated. I lose sleep worrying and feeling guilt about the stress I am putting on him. I have lost countless friendships and relationships due to my symptoms.
As a patient who is sick and suffering, I want to ask the members of the TBDWG why this is allowed to happen. I want to know why hundreds of thousands of innocent people are left to suffer while others line their pockets. I don’t necessarily blame the majority of my doctors who never tested me, because they didn’t know any better. They were going off of the information given to them by the CDC and the Infectious Disease Society of America (IDSA).
Almost every panelist on the IDSA panel, the ones writing the guidelines for the treatment of lyme and associated diseases, has a documented conflict of interest.
Authors of the guidelines with documented conflicts of interest include but are NOT LIMITED TO*:
Gary Wormser, Robert B. Nadelman, Raymond J. Dattwyler, Eugene D. Shapiro, Allen C. Steere, Daniel W. Rahn.
These members all hold financial stake in some part of the disease – whether it be testing kits, vaccines, or consulting for insurance companies regarding treatment. This is a direct conflict of interest and does not put the public health and welfare into consideration. Panelists such as Dr. Shapiro are essentially being bribed by insurance companies who do not want to pay claims to write guidelines saying care is unnecessary. This is not only unethical, but criminal.
Enough is enough. 500,000+ people just in the United States are contracting lyme every year, and those numbers are just guesses due to the CDC’s inadequate testing. These numbers also don’t account for those who were never tested and have been living undiagnosed for years, like me. It is important to note that 25% of new lyme cases are children. 1442 children get lyme every week. 41% of children with lyme had suicidal thoughts and 11% made suicidal gestures. I was one of those children. This is not acceptable.
The Tick-Borne Disease Working Group should acknowledge to Congress how many lives have been absolutely ruined by this disease and by our governments failure to acknowledge the outright lies and misinformation perpetuated by the CDC and IDSA. Policies should be put in place to ensure that public officials cannot hold financial conflicts of interest in the disease they are writing guidelines for. No one should have to suffer the way people with tick borne illness do. Doctors should not have to risk their livelihoods and their licenses to treat people who are genuinely sick and even dying. This has gone on entirely too long.
Thank you for your consideration,
Caroline
Sources:
* Association, L. D. (Ed.). (2001). Conflicts of Interest in Lyme Disease: ...
https://lymediseaseassociation.org/. Retrieved April 15, 2022, from
https://lymediseaseassociation.org/wp-content/uploads/2001/04/ConflictReport.pdf
Christine Longette
Neptune NJ
On June 14th 2020 amid the pandemic, I went on a nature trail hike to spend some outdoor socially distanced time visiting with friends. We walked for 2 hours and then parted ways. Before getting in my car I grabbed my lint roller to do a quick tick check. I was mortified to find that each of about 20 sheets of lint tape were covered in lone star ticks. There had to be at least a thousand of them of assorted sizes from seed ticks on up to adult size on my clothing and body. I drove home unclothed and showered immediately only to find a few more that I missed that had bitten me.
I had no idea of the dangers of a Lone Star tick bite and did not seek medical care right away. A couple of weeks later I thought I had come down with covid because the symptoms were all the same. Covid didn't make sense because I was quarantined except for the hike with friends, and we stayed far away from each other. I was really sick and went to the emergency room where I was treated terribly, not tested for covid (or any other infections) due to shortages and sent home to ride it out.
I started researching what else could cause these symptoms came upon information about Rocky Mountain spotted fever and Lyme disease. Lone Star ticks don't carry Lyme and so I asked my doctor to test me for Rocky Mountain spotted fever. It was positive! I started doxycycline and mostly recovered. I still have blood vessel damage and discoloration on my legs and ankles.
I never received a phone call from the health department so I'm not even sure it was ever reported.
Had I been aware of the dangers of a Lone Star tick I would have immediately started antibiotic upon noticing the bites and not have suffered permanent damages to my body. I also would not have had to spend a night in the ER thinking I had covid due to the lack of knowledge of the hospital staff who never tested me for tick born illness.
A few months later I started breaking out in random hives and found I had also developed the alpha-gal allergy. Needless to say, my life is forever changed.
I recently heard a radio ad about the Heartland virus caused by the Lone Star tick with absolutely no mention of all of the other terrible things those same ticks transmit. They only told of a small fraction of the needed information. In my opinion, this is more dangerous than not advertising at all. Raising awareness of something that you have a very small chance of getting while ignoring the 50% chance of being bitten by a tick carrying RMSF may cause both patients and doctors to overlook RMSF's covid-like symptoms. Hopefully this ad at least raises awareness of ticks in general.
We desperately need more education to be placed in public places so people can learn more about the lone star tick and Rocky Mountain spotted fever. Even just a simple warning sign at the entrance of every wooded park area would probably save an incredible amount of suffering. Radio ad time that simply advises anyone bitten by a tick to see their doctor for testing and antibiotics would be amazing. And providing doctors and hospitals and medical staff with material outlining protocol for dealing with tick bite patients would save lives.
If I didn't Google my symptoms and just rode out my "virus" as the hospital advised me to, I would not be here today.
If I ignored my hives as "random" as the nurse practitioner at my doctor's office said they were, and if I did not insist on specific allergy testing for Alpha-gal allergy, I may have died in my sleep from delayed onset anaphylaxis after my next steak dinner.
Please help to get this information out to the public.
Thank you,
Christine Longette
Neptune NJ
C. Stout
Muskogee, OK
I was diagnosed with Alpha Gal Syndrome in July, 2021 after I had an anaphylaxis reaction where my face, mouth & throat swelled up and red spots broke out on the left side of my tongue. It was frightening and left me with a $1,500 Emergency Room bill that I’m paying off. The only tick bites I could remember were from 2 tiny seed ticks that were only attached for a few hours before I discovered and removed them. My allergist said that one of them could possibly have been a baby Lone Star tick.
Since my diagnosis, I’ve had 2 additional anaphylactic events due to cross contamination from restaurants. The bagel I had eaten had been toasted on a grill shared with sausage and/or bacon. Restaurants need to be made more aware of Alpha Gal Syndrome and food contamination.
Alpha Gal Syndrome is becoming increasingly more common. I had never heard of this syndrome before my diagnosis. There needs to be more education on this topic.
Please ask for more research funding to find a cure.
Thank you.
Frances Kerr
To whom it may concern.
I am writing to express my Great Dissatisfaction of both the Government and the medical profession as a whole, on the lack of knowledge about Alpha-Gal Syndrome. Plus the fact that very few organisations or government entities have any desire to actually research this growing problem.
It Totally changes your whole life - and in the majority of cases, the issues we have to deal with are life long.
At the moment many of us have to rely on a Facebook page to get any answers and too many of us have had members of the medical profession either telling us -
"its all in your mind" or "you are imagining it"
" i dont know what your issue is, work it out yourself"
"well your numbers say you are negative for AG, so just ignore it"
"go find another doctor"
and even laughing in our faces.
Alpha-/gal Syndrome is serious and can be life threatening. At the moment it is reckoned that over 3% of the population has this disease, and it doesn't matter if you are 2 years old or 99 years old.
This is quote from Tim Opelia, and it's a very simplified account of what many of us have to deal with :-
"Alpha gal disease is now medically known as Alpha gal Syndrome. Reactions to mammalian ( meat) derived products can include dairy( especially heavy fat dairy ) products, personal grooming items soaps, Shampoos, toothpastes, even lanolin strips on the razor blades. Also includes cleaning products, laundry detergent and dryer products.
In addition, mammalian ingredients can be found in the majority of medicines and vaccines including many childhood prevention vaccines.
Life threatening reactions to fumes produced by mammalian products do occur.
Note within a large subgroup of dog and cat households, this can become very challenging, given that both dogs & cats are mammals."
This is a problem that is beginning to appear in every state. The government needs to do something NOW.
Most people have an incredibly hard time adjusting to a completely different diet and it's not helped by the fact that some of us cannot eat vegan products due to the use of ingredients that include different "gums".
We need better labeling on all products, many of us spend hours on the phone checking the ingredients with companies.
We need better education in both the medical and educational systems.
Thank you for your time.
Frances Kerr
Grace and Charles Laster
This is concerning the upcoming Alpha Gal Syndrome conference to raise awareness of how AGS and tick borne disease severely effect the lives and health and healthcare and outcomes. It would take a book to describe the complex medical issues my husband has endured since he was bitten by what we first thought were Chiggers in Mammoth Cave National park in 2002. He has a terrible rash of bites that seemed to spread and took forever to heal. ( We now think he contracted Rocky Mountain Spotted Fever that became systematic ) He also developed a severe anaphylactic response to red meat even though he was told that wasnt possible but after 3 close calls eating meat and awakening to severe reactions he stopped eating meat and we kept liquid Benadryl on hand . Over the next years he endured a cascade of medical problems. Severe fatigue and arthritis, blood pressure dysregulation, myclonic movement disorders, central and obstructive sleep apnea, inflamed nasal turbinates and surgery , carpel tunnel and surgery, dermatitis, hives, chemical allergues, severe autoimmune iritis , the myclonus got so bad and uncontrolled it broke his neck and put a bone spur into his spinal column. He did not know that he probably had contracted RMSF when he was bitten by another tick and was going in for epilepsy testing. He was hooked up when he started coming down with an acute infection. It was horrible. After he diagnosed the myclonus we asked if could have a tick disease causing his problems but the doctor said no way he would have died..yet a week later they found long term antibodies and he was finally treated with antibiotics. He takes an enormous amount of medications to control his symptoms. But it wasnt until he landed in the hospital with a completely clogged heart ( AGS?) And needed surgery did we find out the implication and dangers and complications of surgery and medications. He was still really allergic. It was touch and go. Now he has a pancreas that's failing and the doctor has no option for him because he's allergic to Creon. There has been no cooperation from doctors to help him secure medications that are mammal free or compounded. We do all our own research and he's trying to survive until science catches up. But much more needs to be done to educate doctors and pharmacists and help people from getting killed trying to get care. Let alone all the other inflammatory conditions that seem to accompany AGS. Thank you for your work and consideration. If you would like more details please contact me . My husband has seen hundreds of doctors and AGS is jyst a pain to them with treatment now that it has come to light and he gets bounced and referred out to someone else who has to pick up his history from scratch. Dint get me started with allergists!! The worst. They should know so much better. Thank you. Grace and Charles Laster.
Ms. Fort
I was diagnosed with RMSF and STARI in April of 2021. It is amazing to me how little research has been done on tick borne diseases and how little the medical community knows about them, from General Practitioners to Infectious Disease specialists. It is a huge black hole. If my doctor followed the CDC guidelines I would be dead. Fortunately he had worked in the area long enough to have his own protocol, that saved my life.
Why is there so little research in this area? Ticks are spreading across the country so doctors need to know about these diseases. If treated early they have a better chance of recovery. There are so many stories of misdiagnosis, and people suffering. It seems that doctors consider RMSF as a last resort, yet it can be a deadly disease.
What will it take for more research and more education to occur?
Ms. Fort
IDSA
The Infectious Diseases Society of America (IDSA) is writing to provide input to the Tick-Borne Disease Working Group (TBDWG) ahead of its April 27, 2022, meeting to review and finalize the work of the Working Group’s subcommittees and develop recommendations for its 2022 report to Congress.
IDSA represents more than 12,000 infectious disease physicians, scientists, public health practitioners and other health care professionals specializing in infectious diseases. IDSA members focus on the investigation, diagnosis, epidemiology, prevention and treatment of infectious diseases. Our members care for patients of all ages with serious infections, including tick-borne diseases. We would be happy to serve as a resource for the Working Group.
IDSA appreciates the work of the Working Group and its subcommittees as presented during its last meeting. The inclusion of improving diagnostic and therapeutic approaches to tick-borne diseases in the findings of the subcommittees was welcome. Involving industry partners and incentivizing the development of therapeutics for tick-borne diseases with smaller patient populations is a critical component of tick-borne diseases treatment. Additionally, the focus on improving tick surveillance was also welcome and is crucial to include as an essential facet of tick-borne disease prevention. IDSA continues to strongly urge the Working Group to ground all its recommendations in the best available scientific evidence. Below, we highlight additional issues that we encourage the Working Group to address and include in its final report.
Evidence-Based Education and Research
IDSA was pleased to see a focus on utilizing the best available, peer-reviewed data at the Feb. 29 meeting of the TBDWG. If the working group opts to create or review existing tick-borne disease educational materials, IDSA continues to emphasize the importance of relying upon peer-reviewed evidence. Any educational materials and curricula for clinicians-in-training and continuing medical education should be based on well-designed experimental and clinical studies on Lyme disease and other tick-borne diseases reported in peer-reviewed journals. This focus on peer-reviewed research and data should be at the forefront of any potential review or development of educational materials.
Health Equity and Patient Access
Additionally, IDSA continues to urge the Working Group to prioritize health equity in the prevention, diagnosis, and treatment of tick-borne diseases in underrepresented racial and ethnic groups. Underrepresented groups are highly susceptible to worse outcomes from tick-borne diseases, often due to lack of clinician education in diagnosing dermatologic symptoms of tick-borne diseases on darker skin tones. We reiterate the need to direct support to initiatives that educate health care providers on comprehensive diagnosis of tick-borne diseases in a diverse variety of patient groups. We also reiterate that language supporting the expansion of access to medical professionals and infectious diseases physicians should be included to ensure underserved groups and rural populations have access to comprehensive, evidence-based treatment for tick-borne diseases.
IDSA thanks the Working Group and its subcommittees for their work and attention to tick-borne diseases. We look forward to helping the Working Group advance evidence-based policy that best serves patients and public health. [REDACTED].
Jan
Nashville, TN
Hello,
My name is Jan. I live in Nashville, TN.
I was hiking in a state park and got bitten by a lone star tick in May of 2021 in the mountains of Cashiers, North Carolina. My life has literally been a nightmare since being bitten by this tick. I was diagnosed with Alpha Gal Syndrome.
I am affected when I consume any mammal products or mammal by-products (anything with a hoof/beef, lamb, sheep, pig, porcupine, dairy, cheese, butter, etc.). I react with constant post nasal drip, excessive swallowing, shortness of breath, hives and my throat closes up. It is very, very scary and life threatening. I carry an Epipen.
I can eat anything with fins and feathers (chicken, turkey, seafood and emu), vegetables and fruit.
I am fortunate that I was diagnosed early (in October 2021).
Alpha Gal is something I have to think about and deal with daily. I cannot go to restaurants without having to talk with a manager and getting assurance my chicken or fish will not be cross contaminated with other mammal products. For example, if a steak is cooked, then they cook my chicken where the steak was, I can have bad reactions. Thus, going to a restaurant is not very enjoyable for fear of being served food that I cannot have (by mistake).
If I go to the dentist, there are several procedures that cannot be done. Please see the link. I cannot have any catgut stitches.
https://www.facebook.com/groups/alphagalsupport/permalink/1020758254961186/
If I go to the ER/hospital, many physicians, nurses, dieticians, anesthesiologists, hospital food service, allergists, gastroenterologists, family practice, NP's/PA's have no idea what Alpha Gal is nor how to treat someone with Alpha Gal.
If I go to a pharmacy, (and Alpha Gal allergy is on my file) most pharmacists/techs (including compounding pharmacists) don't know what Alpha Gal is nor how to make sure my medications are mammal free. Recently, my allergist prescribed Flonase brand (mammal free) and when I picked up the medication at Kroger pharmacy, they switched it to generic. The generic had mammal. I started having reactions and could not figure it out for weeks (of misery).
I had vitamin D3 compounded from a compounding pharmacist who knew I had Alpha Gal. Again, I had terrible reactions for weeks. I called the pharmacist and asked him the source of the vitamin D3. He said he did not know. He said, "Let me call the manufacturer." He called me back and said, "Well I learned something new. It's made from sheep."
I've had to switch all my hair products, make up, soaps to vegan.
The absolute worst and on-going challenge has been/are vitamins and medications. I have to call the manufacturers and/or find out the NDC #'s and call to see if these products contain mammal. Sadly, many times it depends on who you speak with and they may not be correct.
I've even had challenges with water! It depends on how the water is filtered. If they use bone char to filter, I will react.
My asks are:
1. Please make it mandatory for the entire medical profession to learn and understand what Alpha Gal is and how to treat people with it. It can be a matter of life or death.
2. Please make chefs, restaurant managers and owners learn and understand what Alpha Gal is and how to prepare food without cross contamination. It can be a matter of life or death.
3. Vitamin and supplement manufacturers should list if their ingredients are mammal or plant based on the label. This includes magnesium stearate, glycerin and stearic acid.
4. Water manufacturers should list if mammal is used to filter their water.
5. Personal products, such as soaps, shampoos, and makeup should list if mammal is in their products.
6. "Natural flavors" on food labels is very deceiving. This can include beef tallow, pork, etc. I really don't care what those natural flavors are. I only care if they contain mammal.
There is a lot more to it, however, this would be a great start.
Alpha Gal is extremely hard to live with every day. If a manufacturer is going to make a product for the public, it should be required by law to list if it is mammal or plant based.
Lastly, this allergy is as serious as people that are allergic to nuts. So when a label says it contains nuts, it should also say it contains mammal.
Thank you for your time and consideration. Please do everything in your power to make these changes.
Sincerely,
Jan
Elizabeth
New Harbor, Maine
My name is Elizabeth. I live in New Harbor, Maine and I am ten years old. I have two fish, one rabbit, seventeen chickens plus one rooster, and two horses.
My friend Oliver lives just down the road and, frankly, I am very worried about him. Oliver is my best friend. He has mood changes all the time. He has all of the symptoms of Lyme. He goes from happy to sad and angry very quickly. He’s my best friend and I don’t want him to be sick. He had a tick bite a couple years ago and the head is still in his leg. He lives in an area where there are lots of ticks. They built their own house in the woods. I think he has Lyme Disease.
The world has been lying to Oliver and his family.
They do not have the right doctors for Lyme Disease. I think when they get a tick bite they just don't worry about it. They aren't worried about Lyme Disease. In twenty years Lyme Disease could be much worse than it is now or even in five years.
I think Lyme Disease in our area could be worse and Oliver could have a more severe case because he doesn't have a good doctor. They just don't know how dangerous tick bites are.
There are definitely a lot of ticks out. Our horses, in the last few days, have gotten lots of ticks on them and the grass hasn't even grown up yet.
Ticks are definitely dangerous.
I've probably had 15 or 16 tick bites over these ten years. It doesn't take much to get a tick bite. All you have to do is go from your car to the house and just like that you get a tick bite.
I don't remember what it was like when I first started seeing Dr. [REDACTED]. I love her so much. She has helped us for many years. Thanks to her I'm so much better than I used to be and I wish there were more doctors like her. I've had Bartonella and Lyme, especially Lyme maybe ten times in the last few years.
I remember a time they had a scented candle at school and they didn't believe me when I said I had a headache from it. I was sick all of the time at school and they didn't believe me.
Now I homeschool and I have the best life living with my mom, our horses, our bunny Aurora, my two fish Goldy and Two Tail, and our chickens.
If you ever need to do bloodwork try going to [REDACTED] and requesting [REDACTED]. She’s the best and you’ll find her a very good friend. I’ve had to do a lot of blood work which I hate. [REDACTED] has a way of testing so that I don’t have to do blood work so many times.
I have a lot of congestion. The LBG (Light Beam Generator -an infrared light treatment) really helped me breath through my nose which I hadn't done for years. Which means I can't smell things when they are burning on the stove. I kinda had forgotten how to use my nose, not really, I just dont use it often. Right now I am taking Aqueous Zinc, ENT support drops, Bio-D emulsion (that’s vitamin D), aloe vera, smart silver, liposomal vitamin C, and probiotics. We now make our own tick spray with lemongrass, thyme, rosemary, geranium, which are all oils, witch hazel, a carrying oil and water. Dr. [REDACTED] told us how to make it. We can't use mints or eucalyptus or clove. We put the tick spray on the doorstep so we don't forget to put it on.
It would take much too long to list all of the foods I can't eat. But the main ones for Lyme are no gluten, no soy, no dairy, no sugar. just honey and maple syrup for me.
We need to work together; we can fight this if we try hard enough. People need to be more aware of the danger of ticks and their diseases. We need more doctors (practitioners) like [REDACTED]. She’s been helping us for many years and thanks to her, diseases like Bartenella and Lyme, we hope can be beaten forever-if there are more doctors like her!
EJBH
Manchester, GA
I have had Alpha-Gal Syndrome (AGS) mammalian allergy for ten years. My three main concerns are:
1. Hospital Emergency Rooms/Pharmacy/Anesthesiologists, Hospitalists, Nursing, Food Service I live in a rural central Georgia town of 4,000. We have a small hospital that has a M.D. staffed emergency room If it closes I will have to move.
Emergency Room Staff MUST be required to attend an in-service scripted by AGS experts with a one page summary readily available in emergency room and online. List of problem medications and stocked acceptable substitutes - this will require training of pharmacy staff and ordering protocols. Surgeons and Anesthesiologists must be included in case emergency surgery is needed. Also hospitalists and nursing staff must also be involved in retraining because supplies used in after-care such as bandages and hygiene products can cause reactions. In essence, all hospital staff must be aware of the basics of AGS and now where to go to get more information.
2. AGS recognized as a possible disability under programs receiving state or federal funding. I am 80 and also a polio survivor who uses a wheelchair and has little use of my right arm. My husband does so much to help me now but if he is unable to care for me I will need to go to assisted living or nursing home. We have been paying long term care insurance for twenty years to be prepared BUT now I will not be able to trust anyplace to keep my food safe all mammal by-products so anaphylactic shock would be a constant worry. I want AGS to be a reason to allow insurance and government funds to pay for care at home.
3. Labeling - It is so hard to tell on current food labels what contains mammal derived or has been prepossessed with mammal. A logo such as on vegan or kosher foods would be ideal but a statement at the bottom of the ingredients list stating "Product contains or was processed with mammal product" MUST be required.
Thank you for your consideration.
Karl Studenroth
My Background:
I am a U.S. Air Force veteran with an honorable discharge and multiple honors including the Air Force Achievement medal, Good Conduct medal and much more.
I served in AmeriCorps for two years in Florida State Parks. During that time, I lived in a 25 ft camper with limited services & utilities. I organized & established an annual event for disabled people in Big Lagoon SP, which has been held for 13 years now. I served the local community in many aspects such as projects & events for Boy/Girl Scouts, civic organizations, schools & universities.
I served as a public servant and Federal park ranger for the Army Corps of Engineers (USACE) for just over six years, at Lake Ouachita, AR. I excelled during this service and received numerous awards.
I established a non-profit organization in December, 2004 – the Northwest Florida Environmental Conservancy. Through this organization I have done extensive work to benefit the environment, schools, universities, Boy and Girl Scouts, civic organizations and more for 18+ years.
I have worked as a biologist and park ranger for many Federal and State agencies and private organizations. I worked for the Federal Government for over 14 years, including the Air Force. I worked during the Gulf oil spill cleanup efforts, in the aftermath of hurricanes and in many more ways for my Country, numerous States and Communities.
Summary of the Disease:
On 3 October, 2019 I became severely ill after contracting Rocky Mt. Spotted Fever (RMSF). I’ve proven I contracted the disease in the line of duty and it has been accepted by Worker’s Comp (OWCP) on 28 June, 2021.
Since becoming ill my life has been a nightmare in many ways. I nearly died twice in ER’s from complications of the disease. It took nearly two months to determine why I was ill, but by that time extensive damage had been done to my central nervous system. I had to figure out myself why I was ill and push for my health care provider to test me for tick diseases. I did this after three other park rangers in my office had contracted tick diseases in 2019. At least seven people where I worked contracted tick diseases over several years. I continue to suffer with multiple health problems, relapses and a variety of cognitive and physical disabilities for over 30 months now.
My original and continued symptoms include severe hearing loss; severe tinnitus; headaches (some severe); inflammation of the brain that has led to my heart and other areas of my body (during the first 14 months); extreme fatigue and exhaustion; trouble with concentration and short-term memory loss; trouble with coordination; rashes; unusual, tingling, sharp and sudden nerve impulses.
These symptoms and complications led to two trips to the ER. My first visit to the ER was four days after becoming ill due to severe symptoms. My second ER visit was 14 months after becoming ill and was due to the spread of inflammation from my head, through my chest to the area surrounding my heart. It felt like I was having a prolonged heart attack.
After 15-60 minutes of activity, I have to rest or nap because of fatigue. On average I sleep or am in bed 10-20 hours a day because of the multiple health problems I have. I often have to take naps that last 1-5 hours. In the mornings it takes me at least 60 minutes to become somewhat functional.
I have trouble climbing stairs now, with coordination, with walking and it’s sometimes difficult walking a straight line. I have to use a walking stick when trying to hike or walking long distances,
The biggest issue I deal with continuously is even when I recuperate to some extent, I keep getting moderate to severe relapses and the symptoms can be as severe as the original ones and it takes me weeks to months to slowly, partially recuperate to my new normal. It feels like I have some degree of a concussion all the time now.
Difficulties:
I’ve had to fight USACE every step of the way for 30+ months, even after it was determined that I contracted RMSF in the line of duty. The Union (AFGE) had to become involved on my behalf; and other Federal agencies became involved because of the many illegal, unethical and unprofessional actions by USACE. These agencies include OSHA, OSC (Office of Special Counsel), and MSPB (Merit System Protection Board).
OSHA became involved because of the health dangers and lies by USACE that they had a policy in place for tick safety (which they DID NOT have). OSC became involved after USACE terminated my Reasonable Accommodation (RA) and telework the day after OSHA tried to conduct a safety inspection of Lake Ouachita. OSC also became involved because of my status as a whistle blower and because it was clearly retaliation to cut my telework and RA.
I submitted 15 pages of information of illegal, unethical and unprofessional actions by USACE to President Biden, Senator Elizabeth Warren, the Union, OSC, OSHA, etc. President Biden and Senator Warren only briefly replied and provided me NO help. After serving my Country in so many ways and with what I’ve gone through this is very disappointing.
Being unable to work and suffering with disabilities, USACE illegally dismissed me on 10 April, 2021. Because of this and the multiple violations by USACE, my case was heard by a Federal judge with MSPB. I have recently settled some of the legal aspects of my case, but USACE still has not fulfilled parts of the agreement and it took nearly nine weeks to receive a relatively small payment – a payment and agreement designed to shut me up. The items in the agreement were things USACE should have voluntarily done to help me long before my termination.
I have struggled to find and get adequate and proper medical care. My original health care provider ([REDACTED]) released me because they said they could not help me. I feel that because the RMSF was not diagnosed in a timely manner, and that I did not receive proper medical care lead to the severity of my illness and long-term impact.
Because of the relapses I deal with, I have ongoing symptoms that are as severe as the original onset of the disease. I still have not been able to find proper health care to treat my relapses and ongoing medical issues.
Due to losing my job I had to seek health care through the VA which has mostly been inadequate, and they do not know how to treat the long-term problems of a tick disease. The VA itself is very dysfunctional and difficult to navigate. I have had to file complaints several times to get proper and timely care.
Even though I was approved for Worker’s Comp I fight to receive any benefits or reimbursements and am about to lose over $40,000 in lost pay and reimbursements. Even when I am due reimbursements or should receive lost pay or leave, OWCP finds a way every time to NOT pay me what I am legally and rightfully due – it is appalling! I continue to fight with USACE and OWCP over what I am due when I have proof of my lost wages and expenses.
As part of the legal agreement, and because of my disabilities now; USACE was supposed to help me with a variety of aspects including my Federal disability retirement, and OWCP. I was given partial help, but still had to pursue through MSPB and the Union, that USACE uphold all aspects of the legal agreement.
A small example of the legal battle I still have with USACE is in the recent retirement paperwork I received from two USACE sources (including my former supervisor) there were false and inappropriate statements and inaccurate information. Such items could negatively impact my disability application and are a reflection of the lack of character and integrity of the USACE chain of command I have dealt with. After performing in a very satisfactory manner over six years, and under the circumstances, especially with the legal agreement, these statements and incorrect information should not have been included in my disability retirement paperwork.
I also had to file for Social Security Disability in May of 2021, but this too is a long and complicated process.
The Union has also greatly failed me. Two Union representatives have both said the Union failed me. I was the only dues paying member willing to stand up to USACE at Lake Ouachita. The Union was also supposed to help me with paperwork and legal aspects, but I have had a continued battle to get them to do anything in a timely manner, in a professional way and to get help. Their lack of help and little to no response so many times, in many ways has harmed my overall case far more than the Union has helped me. I can’t begin to list the dozens of ways and times the Union failed me. If the Union would have represented me properly, I may not have lost my job and had this enormous battle while I suffer medically every day.
I also have NOT received a single monthly payment from OWCP, Social Security or my Federal retirement! I have lived off my savings now for 11+ months.
I was about to buy a new vehicle and land to retire on when I became ill. These are now on hold indefinitely while my savings disappears.
Conclusion:
I now suffer medically, cognitively, emotionally, personally and professionally every day for 30+ months! This is not what I wanted at the point I became ill or for my life. I had finally reached financial stability and was in the final years before a Federal, retirement, which have been lost. I only seek what I have lost and what this disease has cost me.
Having served my Country in so many ways, I more than deserve the rights and services I have tried to seek. I should not have to face so many continued difficulties, a corrupt Army Corps, other dysfunctional Federal agencies that seem afraid of USACE, red-tape and denial of my benefits and proper health care. If I recuperate enough, I would like to return to work as soon as possible.
Thank you for your time and reading my testimony. Sincerely, Karl Studenroth
I have supporting documentation and items if necessary to support my claims.
Kathy Jacobson, RN
The Broadwell Hill Forest Sanctuary & Off-grid Learning Center
Stewart, Athens County, Ohio
To Whom it Concerns:
I am an Independent Registered Nurse who provides collaborative community health education and advocacy services. I am also a forest manager whose livelihood depends upon work in the forest.
My experiences with tick borne disease and alpha gal syndrome have been a nightmare.
I was finally able to find a doctor familiar with alpha gal who ordered the correct test. It revealed a high positive Alpha Gal IgE test. And a recent tick panel revealed positive RMSF IgM so I am currently on a 30-day Doxycycline treatment regimen for an unknown rickettsia disease.
However, my doctor and pharmacist did not know that doxycycline might trigger alpha gal reactions. I had to do a lot of legwork to find out that most Doxycycline tablets or capsules contain mammal derived inactive ingredients. Then my treatment was delayed because I needed prior authorization from my insurance company to obtain the alpha gal safe liquid doxycycline suspension.
The nursing director from our local public health department called to follow-up on my positive RMSF lab test. She did not know about the current challenges in our area related to wood ticks, did not know about alpha gal, RMSF, rickettsia, chronic lyme and other tick borne illnesses.
So, my personal experiences with tick borne disease and the alpha gal syndrome have revealed the extreme knowledge deficits and a severe lack of preparedness in our local health care system.
I was encouraged to submit complaints about the lack of adequate care in this area (see below), but I would prefer:
- Emergency funding for research related to Alpha Gal Syndrome, Chronic Lyme, Rickettsial infections and the other tick-borne diseases
- Emergency Public health funding to issue notices with mandated continuing education for all health care providers, including specialized training to dentists, anesthesiologists, pharmacists, etc.
- Emergency FDA labeling actions to require all mammal derived products to be listed on medications and food products.
- Emergency Pharmacy funding to update computer systems to flag mammal allergies and all active and inactive ingredients in medications that contain mammal derived products
- Emergency Food Service programs that include continuing education and required mammal labeling for people with alpha gal syndrome in restaurants, schools, etc.
- Emergency Health Insurance programs to ensure coverage for alpha gal safe medications, treatments, and other special needs.
I have a well-developed understanding of our health care systems and community networks due to my experiences as a Medicaid home health case manager and my service as our local Athens City-County Public Health Preparedness Infrastructure Coordinator.
I have served as the Broadwell Hill Forest Stewardship Manager and the Athens’ Own Health and Safety Officer for 22 years now. We have always included Wood tick education with preventive strategies in our human resource protocols and prior to Covid, we always provided such information to the university students and others who joined us for tours and workshops.
I have continued my educational efforts via social media, but things have changed; we are now in an emergency situation with new wood tick species and diseases, including Alpha Gal Syndrome, moving into our area.
I am in communication with Dr. Resa Pesapane, Ohio State University Parasite and Ecology Lab. She oversees a tick research program. I collect the wood ticks that I discover on myself and my dogs and send them to her lab. I also try to stay abreast of her research and educational outreach programs.
The lab is jointly affiliated with other environmental and human health organizations and she is in contact with the Ohio Health Department and Agricultural Department. https://u.osu.edu/pesapane/
The Ohio Wildlife Management Association invited her to speak at their conference in January, 2022. Her presentation can be viewed at https://www.youtube.com/watch?v=3QiidQEiqQ0
As she speaks about in her presentation, in addition to our so-called Dog Ticks, we also have Deer Ticks, Lone Star Ticks and now the Asian Long horned tick and the Gulf Coast Tick are moving into our area. It appears that we are currently at the forefront of a wave that is going to bring an increase in tick borne disease diagnoses, e.g. Alpha Gal Syndrome, Lyme and the other co-infections. And it therefore appears that the public health predictions related to climate change leading to increased disease vectors, like wood ticks, and the subsequent increase in disease and were correct; now we also have the alpha gal syndrome and all the other chronic conditions that are causing a public health emergency.
Personal History:
Chronic: Overwhelming fatigue, malaise, severe GI symptoms (cramps, bloody stool, constipation/diarrhea), cognitive deficits (thinking, memory), emotional (depression, anxiety, panic), skin (maculopapular rash, photosensitivity, hives), myalgia and joint /tendon pain with odd edematous bulges, back/flank pain, visual decline, buzzing ears, neuropathies/parathesia.
Acute:
2018
April Deer Tick Bite: Bull’s Eye with doxycycline prophylactic treatment: 1-100 mg tab BID x 14 days
Daily Health Log initiated: diet, fluids, activity, BM, symptoms, vital signs
2019
Lone Star Tick Bite: Left Breast
January Osteopathic Medical Manipulation: Aggressive Thoracic Lymph Pump procedure in Left Breast area for chronic abdomincal/pelvic pain.
June Anaphylactic Reaction: Consumed Steak and Broccoli for dinner; woke up ~6 hrs later with nausea, diarrhea, itchy palms and soles of feet and then full blown hives all over my trunk. Emailed Dr. [REDACTED] who ordered an epipen and liquid Benadryl.
2020. COVID prevented me from pursuing health care
2021
February two days of severe allergic reactions, possible due to deli cross contamination with meat or avocado histamine: severe demographic hives on upper arms, then trunk, lips and cheeks tingly, severe headache, chest pain and GI reactions.
I also developed red rashes in response to tape and bandaids.
Covid delayed the pursuit of health care but I tried to arrange things to be able to act quickly after I had received my two covid vaccinations.
3/5/21 covid Pfizer #1
3/19/21 I emailed Dr. [REDACTED] with a request for referrals and blood tests to speed things up.
3/20/21 deer tick bite
3/30/21 covid Pfizer #2 and dog tick bite
4/5/21 Initiated an extreme elimination process to try to reduce symptoms and identify cause
4/13 21 Lone Star Tick Bite
5/8/21 severe abdominal pain with bloody stools and chronic symptoms continue
5/13/21 Unable to schedule visit with Dr. [REDACTED] because the office said I was no longer his patient due to how long it had been since my last visit; even though he had ordered epipen in June of 2019 and I had been in email communication with him about symptoms, blood tests and referrals.
I was referred me to a young intern who had poor communication skills and did not know anything about wood ticks and tick borne infections. She ordered the blood tests and made the referrals but I declined on-going care from her.
My blood tests included a significant Vit D deficiency, Elevated Total IgE 243 (0-100) and a negative Tick Panel test. But the new doctor, Dr. [REDACTED] were unable to successfully enter the correct codes for the Alpha Gal tests.
Even though I had provided them with Alpha Gal information, including the correct Mayo Clinic code. I made four trips to the lab and contacted Mayo Clinic to request that they call the [REDACTED] Laboratory to assist them.
5/21/21 Dr. [REDACTED] ended up writing to [REDACTED] saying “… her tick panels were negative and I do not see any purpose in pursuing this (alpha gal test) further…”
I wrote to Dr. [REDACTED] informing him that equating the tick panel tests with the alpha gal tests was a logically flawed approach because alpha gal is an allergy, not a tick-borne disease. He fired me and I had to try to find another doctor.
In the meantime, I followed-up on the referrals for Ob//gyn and GI to rule out all possible causes for my severe pelvic pain and GI symptoms.
6/2021 The Ob and the GI Nurse Practitioner and surgeon/anesthetist were also totally unaware of alpha gal syndrome. I told them about my allergy to tape and band aids but was worried about the ultrasound and exam gels and the medications involved with the upper/lower scopes. But they all went well without any reaction and did not reveal any other causative factors, e.g. cancer.
6/14/21 I saw Dr. [REDACTED], allergist, in Southern Ohio who said he is seeing more alpha gal cases there due to the influx of the Lone Star Tick into the area. He ordered the blood tests without difficulty and performed skin prick tests.
Results: Alpha Gal positive: Alpha Gall IgE 16.60 (<0.10) and beef IgE 6.41 (<0.35), lamb IgE 1.5 (<0.35), Pork IgE 4.53 (<0.35), Venison IgE <0.35 (,0.35)
Skin prick tests: no food allergies but severe environmental allergies: 4 types of mold, dust mites, pollens, ragweed, grasses and trees
I had never experienced severe environmental allergies in the past, but it is possible that my allergies manifest as severe GI symptoms vs upper respiratory.
I arranged care with another primary care doctor. He followed up on the Vit D deficiency and ordered Vitamin D tablets to minimize the risk of reaction to the gelatin capsules. I took a few doses and promptly experienced severe abdominal cramping, constipation, and bloody stools. It was like the medication ripped my intestines raw and through them into a spasm, slowing/stopping peristalsis. My intestines were traumatized, and it took 2-3 weeks to recover. I found out the tablets not only contain mammal derived inactive ingredients but also that all Vitamin D3, unless labeled Vegan, come from sheep lanolin. I purchased “vegan” supplements, including Vit D 3, but they are expensive, and insurance will not cover them.
He also ran additional tests (myoglobin, haptoglobin) to see why repeat urine tests were showing blood without RBCs. I experience chronic flank pain and my mother died from renal failure. Dr. [REDACTED] referred me to a Urologist who said all the urinalysis tests, even though from two different labs, were false positives. So, the issue was dropped with me still wondering if alpha gal or something is affecting my kidney filtration processes.
So, by the time I saw Dr. [REDACTED], the allergist again, my symptoms and reactivity had increased even though I was not consuming any red meat products. Dr. [REDACTED] admitted that he was only familiar with Alpha Gal as it affects most within the “bell curve”, i.e., red meat allergy. He did not feel capable of helping with the more unusual reactions to the inactive ingredients derived from mammals in medication, hidden mammal products in food, skin care products, etc.
He referred me to an immunologist at the [REDACTED] about two and a half hours from here. I was thankful for the opportunity to video conference with her.
9/29/21 OSU Immunology video call Dr. [REDACTED]; she ordered cetirizine tablets and recommended Pepcid AC every day to see if the regular administration of H1 and H2 antihistamines might help reduce my reactivity without having to go on an extreme elimination diet again. I thought she would know what was safe and what was not, so I took a dose of the cetirizine and promptly experienced severe abdominal cramps and bloody stools again. It took me another 2-3 weeks to recover from it. I am very hesitant to take any medications now.
2022 March I asked my doctor to order follow-up blood tests, including a tick panel and an urinalysis. I am still throwing blood in my urine without RBCs. And, as mentioned above the RMSF IgM came back positive so I am now on liquid doxycycline for 30 days. I have tracked down a safe probiotic, but the pharmacy tried to substitute with another brand. They can get the safe medication but now I have to go through the prior authorization process with my insurance again. It is all very depressing.
I do not eat any beef, lamb, pork, dairy. I do not eat any food or medicine that contains non-organic sugar due to bone char filtration, magnesium stearate, stearic acid, glycerin, gelatin, carrageenan, and I am also monitoring histamine levels, avoiding chemically contaminated foods. I do not use skin or dental products that might contain mammal derived ingredients. I must avoid cross-contamination, fumes, and even intimate relations with my partner if he has consumed mammal within the past week.
Thank you for your efforts and the opportunity to share my perspectives, and my experiences with you. This is indeed a public health emergency and I hope you can help us.
Please contact me if you have any questions and/or if I can be of any assistance.
Sincerely,
Kathy Jacobson, RN
Robin Wilcox
A Tick Bite Turned Has Made My Life Small
My normal was of life forever changed Memorial Day Weekend 2019. My husband and I love to hike and the weeds were tall. I knew ticks would be active, but knew I could find and remove them with no ill effects. After all, I have lived in the country all my life. Being outside in good weather was what we did. Climbing trees, running through the woods, rolling in the grass. I have had hundreds of tick bites in my life. But until that day, none caused any issues
After our hike, I found 2 tick bites that looked different. There were large red bullseye rashes around them. They itched terribly! After they were still present about 2 weeks after, I was tested for the usual tick borne diseases and they were negative.
About a month later, after having some high fat, high sugar premium ice cream at a local place, I started with throat clearing, then coughing on the way home. By the time we got home, I ran to get an Epi pen (prescribed to me by my allergist, because I had an anaphylaxis reaction to allergy testing). I injected and my husband called EMS. That was the first of many times I have had to use Epi and/or go to the ER.
I thought maybe this was due to strawberries on the ice cream, but I never reacted to them before. A few weeks later, I had a reaction to a smoked turkey sandwich from a local restaurant. So Epi and another ER visit.
This continued until I had a reaction just a couple of days I was going to a conference in New Mexico. Ice cream, smoked turkey, venison. I could not tie my reaction so those at that time. So I was terrified to eat any of the provided meals while at that conference. I avoided any dairy, chose vegan snacks, pretty much ate things that had not yet been a problem. As soon as I got back, I asked for allergy testing. Because of my symptoms, my allergist ordered a food allergy panel and Alpha Gal. Alpha Gal was positive as were several meat proteins.
My husband is an avid hunter. Venison made up a big part of our meat. I had to sometimes cook venison or beef for him, while I had poultry or fish. Some meals we ate the same. For a couple of years I cooked all meats with no issues.
At this point, although difficult, we managed. I bought non-dairy cheeses and milks for me, regular for him. That was a shock to my budget. Vegan foods are more expensive than non-vegan. But, if I was making something that both of us were going to eat, I had to make it AG safe. This went on for a couple of years.
Then, in an instant, my life got suddenly smaller and more difficult.
My husband was cooking venison for his supper, while I was going to have a vegan meal. After he was finished cooking it, he thought he was being thoughtful and put water in the hot pan, to make cleaning it easier. As soon as the water hit the pan, a plume of steam filled the kitchen. “What did you do?” is what came out of my mouth. And then the symptoms started.
My face started to itch and I started coughing. I literally ran downstairs and turned on a fan. The cough got worse and my husband came down. After a few minutes he said we needed go to the ER. I used Epi and we spent the next 4 hours at the ER. This was my first, but not last fume reaction. And the start of a life fearful of the very air I breathed.
From then on, I avoided driving with my windows down. I changed my shopping habits. Many places here have BBQ pits at grocery stores. If there was smoke coming from one of those, I had to find a different store to shop at. My preferred gas station is next to a BBQ joint. Unless the wind is out of the right direction, I don’t shop there anymore.
I watch which way the wind is blowing, because there seems to be a restaurant on every corner. There is a steak house across from my preferred grocery store. Again, if the wind is blowing the wrong way, I have go elsewhere.
I had avoided any meat fume reactions for almost a year. In July 2021 we went to wedding anniversary party that was outdoors. We knew there were going to be burgers and hot dogs grilling, but I came prepared to stay in the car if necessary. But they had a commercial grill with a commercial hood, outside. We thought I would be fine.
They started to cook and there were no issues. The smoke was going up and being blown away. Then someone thought it good to shut off the hood, they were finished cooking. When I heard the vent shut off, I looked around and all that smoke was flowing my way. And yes, it was off to the ER in Iowa, 5 hours from home. 4 hours later, we left for the week of vacation. I carry 6 Epi pens and emergency meds with me anytime I am not going to be within a few miles of a hospital. We were heading to Custer, SD.
A lot of anxiety and a week later, we were back home with no incidents. In a couple of weeks we took a trip to Arkansas to ride ATVs. No problems there, but we stopped in Branson on the way home. After going through Bass Pro, leaving a little early, because there was a smell in the story that was worrisome, we headed for a gas station. I got out to get a water. Getting back in the truck I could smell BBQ. A BBQ place was a block up and the wind was blowing it our way. As we left the gas station, I told my husband to not leave town. I looked up the nearest ER and that is where we ended up. 4 hours later we were on our way home. Neither the ER in Iowa nor the one in Branson knew much about Alpha Gal, so I had to tell them the protocol was the same for an anaphylactic reaction.
2 weeks later, we were test driving a new truck. We did not realize the back window as not closed all the way. We were stuck in traffic next to a Texas Road House. We had shut off the AC, but I had already had a nose full of smoke. We took the truck back. My husband left in his truck and me in my car. I thought I was fine, for about a mile. Before I could get home, I had to call my husband and tell him to meet me at the ER. I downed my emergency meds, drove to the ER and injected EPI before I walked in. I was coughing so much I was almost choking, but the ER staff seemed unconcerned (usually when you say you have used Epi, they get you back ASAP ) until my husband go there… and I got a bed. The ER nurses did not know how to administer an EPI pen. I learned the hard way when the nurse seemed like she was going to push the autoinjector into my thigh bone… I had to tell her to stop. 4 hours later, I got to go home.
I am very fearful whenever I smell just a wood fire. I am fearful when the neighbors cook out. I am afraid when our church men’s group is firing up the grill for a church BBQ.
My house is 4 miles northwest of the site of a new $200 million lunch meat factory, which is now in the building stage. Across the road from that is a Quaker Rice Cake plant. When the wind is from the Southeast, you can tell what flavor they are making. Vanilla and plain smell good. Strawberry not so much. Am I going to have to wear a gas mask whenever I go outside in a year? Can you understand how small my world, my life, has become? I wear heavy duty masks everywhere I go. In addition to AG, I also have life threatening allergies to fragrances. The masks help, but there is no guarantee these will prevent reactions.
2 tick bites in May of 2019 have made my life small and scary. My husband has to cook his meat outside on our grill. If the weather is bad, he has to wait for another day.
I cannot go to restaurants for fear of reactions. No fine dining restaurants cook only fish or chicken. Even chain restaurants cook bacon, or like Red Lobster, steaks. So my husband and I do not go out to dinner, lunch or even breakfast. I cannot go to his family gatherings, because that would mean they cannot cook their favored foods. Because of my fragrance allergy, I do not ask them over, because they would have to be fragrance free. They are fine with me cooking non AG meats, but the extra “don’ts” are too much.
If I go visit my adult children and grandchildren, they know what to not cook and they accommodate me. They also know the know fragrance rule, so they have to have advance notice I am coming.
The University I work for offers 100% free classes for retirees. I enrolled, signed up for classes. I went on campus to buy a new computer. Even outside, when all the students were changing classes, I could smell perfume and fumes from the numerous eateries on campus. I had to withdraw from college, because they did not want to give me an accommodation to do virtual learning. I plan to appeal that, but for now, I am going to have to wait until the spring semester to try again. It has been a life-long dream to get a degree in agriculture.
Nothing is spur of the moment. Everything has to be planned, accommodations have to be made, foods have to be packed, locations of ERs need to be found. BBQ grills that are not AG free cannot be used. Body and hair care products have to be vegan. Labels on all things are read 3 times. There is no hop in the car and have a weekend away. All of this takes a lot of pleasure out of life. And I still have to be alert to the dangers that most people see as normal life.
I once had a normal life. Now I live in fear that a breeze may be the thing that takes my life.
This is no way to live. 2 tick bites have made my life small, isolated and fearful.
Thank you,
Robin Wilcox
Summer Carroll
Tuscaloosa, AL
To whom it may concern,
My name is Summer Carroll, I am from Tuscaloosa, AL. I recently published a book called “Canary in a Bubble” that shares my journey with tick-borne disease and mast cell activation syndrome. Although a book maybe too much to send, I would love to summarize some of my story to share with you.
My body slowly but surely started rejecting foods one at a time, even the organic ones. My food would just come right back up, and more symptoms would accompany: horrible GI (gastrointestinal) pain and swelling, facial numbness, hives, dizziness and faintness, brain fog and confusion, heart palpations, facial and throat swelling, swelling in different organs, lethargy, weakness, joint and bone pains, the D word that no one likes to talk about, extreme tremors, sweating, nausea, and other symptoms I’m sure I’ve forgotten about. You could kind of relate it to the worst food poisoning you have ever experienced times ten and then just add in all the other symptoms that I mentioned on top of that, and you may have a clearer picture of how horrible these reactions were. My doctor had personally never seen anything like what I was going through. She prescribed a new medication for me to try and ordered more blood work. The new allergist came in, the blood work came back and showed that I tested positive for Alpha-gal syndrome. Months passed, I had cut out all items that could cause an Alpha-gal reaction, but I was still experiencing crazy symptoms, and my body started rejecting foods that had absolutely no mammalian byproducts in it. Additionally, my body became extremely reactive to chemicals, scents, cigarette smoke, and fumes from cooking. As my symptoms began to drastically progress, I was tested for Rocky Mountain Spotted Fever. To our surprise, it came back positive, I wondered how this could have possibly been missed. I mean, you would assume that if someone tested positive for one tick-borne illness the doctor would check for other tick-borne illnesses and coinfections, right?
The CDC informed my doctor’s office that I needed a referral to an infectious disease specialist to receive proper treatment, and they agreed. The infectious disease doctor entered the room and right off the bat had a smug look, but I ignored it, introduced myself and started telling him why I was there. After I finished talking, he looked at me and said, “I don’t care what the test results say, we do not have Rocky Mountain spotted fever or Lyme disease in Alabama.” Baffled by this, I told him that the CDC had sent me to him and said that I needed proper treatment for tick-borne illnesses, to which he replied while laughing, “I saw where the CDC requested you be seen, and the first thing I am going to do when I leave this room is call and give them a piece of my mind. We do not have Rocky Mountain spotted fever here, so they should have never sent you.” He then asked, “Have you lived in or visited any other states?” I replied, “Yes sir, Georgia, Tennessee, Pennsylvania, Oklahoma, West Virginia, Florida, Louisiana and a few other states I have visited,” and his reply was “Those states don’t have Rocky Mountain spotted fever either. At this point I was losing hope in the medical community. Doctors were just passing me back and forth, some showing compassion and really wanting to help but acknowledging that it was over their heads, while others just looked at me like I was crazy and then tried to prescribe a medication for anxiety which contained the same ingredients that they had just seen I was allergic too!
I fully believe that doctors should know what they are prescribing to their patients before giving it to them, don’t you? For example, if the doctor has enough sense to check your blood work for red dye allergies, then you would think that he should have the knowledge not to prescribe a pill that has red dye in it if you are allergic to it, correct? Because what happens if that patient just puts her trust in her doctor and takes the medication as prescribed and then has an allergic reaction to the medication because of the red dye? Whose fault would it have been—the professionals who spent years in school or the patient who is blindly putting her trust in her medical provider like she has been told to do? This happened to me several times with the medications being prescribed containing mammalian byproducts, leading to a reaction. I personally believe that Alpha-gal syndrome should be taken just as seriously as a shellfish or peanut allergy. There should be warning labels on all products just as there are for a peanut allergy, even if it’s something simple that says “this item may contain animal byproducts.” I for one can say without a shadow of a doubt that a label like this would save a lot of people from experiencing allergic reactions, because most of the time ingredient lists will say “natural flavors,” but in all actuality the natural flavor is really beef broth. Someone new to Alpha-gal syndrome would have no clue about this; they would just be looking for the word “beef,” not “natural flavorings.” This is a lesson I had to learn the hard way. I eventually started breaking every ingredient down because unfortunately animal byproducts can be listed under many different names. A label that would warn of animal byproducts would truly help children such as my son who may not comprehend what all ingredients to look out for, but they would understand to watch out for a warning label. I also strongly believe that all doctors should be aware and informed of the high risk of an allergic response to vaccines in children and adults with Alpha-gal syndrome, as most vaccines contain animal byproducts. To take it a little further, due to the increasing rates of Alpha-gal syndrome, I believe that we should incorporate the Alpha-Gal Panel testing into our children’s yearly schedule prior to receiving vaccinations. I’ve personally had firsthand experience with vaccine reactions because of this issue, and I can tell you it’s not pretty and it’s very scary to have to deal with it, especially when it could have been prevented had the doctors had the appropriate knowledge on the subject. And while we’re at it, let’s give some funding toward having vaccine safety studies done.
I began to lose the ability to move my joints, and extreme neuropathy started to set in—a never-ending, unimaginable burning as if my skin were melting off of my body that began in my feet, working its way up my legs. I lost my ability to walk. I could not even stretch my legs out straight anymore or wiggle my toes, and I was in such constant pain that I was only sleeping one hour a day in a 24hr period, and the only reason that I slept that hour is because my body would just black out, and then I would come back to. By this point every moment and every heartbeat was torture. The pain never ceased, by this point my weight was down to around eighty-five pounds. I had lost a large majority of my body’s muscle mass and had begun to look like someone you might have seen from pictures of the holocaust, and it became very obvious that I was losing this battle. We arrived at the nutritionist’s office he told me that he wanted to admit me into the hospital to receive nutrition through a PICC line. He explained that I was extremely malnourished and dehydrated due to the mast cell activation syndrome and Alpha-gal syndrome, limiting what foods and liquids I could safely eat. My doctor’s original plan was to have a PICC line placed in my arm, and he scheduled to have the PICC line nurse come in to go over the procedure before they scheduled it. But the unexpected happened—my IV site became swollen, red and very painful.. Several hours passed, and it started happening again, so they ordered an ultrasound, which showed another blood clot. The doctor’s plan turned from wanting to place a PICC line to wanting to place a Hickman port inside of my chest. The doctor also wanted the hematologist to come in to talk to me to see if we could find a safe blood thinner for me to take before the surgery because some blood thinners can be unsafe for Alpha-gal patients. The next day the surgeon came into the room to go over the procedure. My husband wanted to make sure the surgeon knew that I had MCAS and Alpha-gal syndrome. That way, they were aware of the risk of a reaction so they could be prepared. The surgeon then looked me in the eyes and said, “How much of this is even real?” In return my husband replied, “Excuse me?” The surgeon then proceeded to tell me that he felt this was just all in my head. My husband was quick to respond back that this was not in my head, that these were actual documented medical conditions. The doctor then said, “I have never heard of these illnesses, and I don’t believe those are even real conditions.” He then looked at his assistant and said, “Let’s go. They can find another surgeon to do her surgery. I am not wasting my time.” I was so hurt. How could he accuse me of making up not one but two medical diseases that were clearly documented? I had returned back home from the hospital for my own comfort as the doctor requested because there was nothing more the hospital could offer, and nothing was better. If anything, I was more hopeless than before. I just could not understand why none of the treatments were working. Why was my body rejecting everything?
I had read about patients with MCAS being treated with medical cannabis, but I had not tried this medical treatment option because it was illegal in my state. I had come to the point though that if I didn’t find a treatment, I wasn’t going to be here much longer, and the thought of not seeing my son grow up and not having the opportunity to grow older with my husband was more unbearable than the thought of being arrested for trying a scientifically proven mast cell stabilizer that could possibly save my life! The time had finally come for me to try the organic medical cannabis, It wasn’t but moments until I could feel this cool, calming sensation pass over my entire body. At this moment I was in awe because I could literally feel my body calming down, and it was beyond amazing. As we stepped up the amount of the medication to every hour, a large majority of the symptoms I was experiencing became more tolerable. Within moments the hives and skin flushing eased up. The horrible, sickening nausea eased up. The burning and inflammation in my GI tract began to ease up significantly. The uncontrollable tremors, muscle spasms and sweating eased up within moments, and the seizures I had been experiencing, which had totaled around forty at that moment in time, had come to a halt without having to take the seizure medication I was prescribed. This was a major miracle for me. No, it wasn’t a cure, and yes, I am still severely affected by mast cell activation syndrome, but this had calmed my system enough for me to find a couple more safe foods and vitamins of a very specific brand that my body could keep down, thus helping me battle the extreme malnutrition stage I was facing. Mast cells contain not one but both CB1 and CB2 receptors. Because of this, research shows us that cannabinoids (THC) will bind to these receptors suppressing mast cell degranulation.
I was so excited to learn that there was a push to legalize medical cannabis in my home state. I took the time to reach out with my story to the very ones trying to pass the bill along with the state representatives, hoping that they would add in my situation so it would be covered under the new bill, but I was very saddened when I realized after it passed the bill only applied to medical cannabis oils. In my case, the medical cannabis oils caused anaphylactic symptoms when I ingested them or used the vape oils, along with causing blisters to form on my lips and in my mouth. However, my body does tolerate smoking the organic medical cannabis flower itself, giving me the chance to get the MCAS under control enough to survive this horrible illness. How could the representatives and the governor possibly see the medical benefits of a medication that is scientifically proven to help control a condition that can be very life-threatening but tell you that you cannot receive this proven life-saving treatment legally because it is not in a processed oil form? That sounds silly, doesn’t it? How can you say to one person, “You can have your medical marijuana oil for depression and be safe without the risk of criminal charges” but tell the other person who has to have the unprocessed organic medical marijuana flower to actually survive a rare disease that they can’t? How can you not offer the same legal protection to both patients? The new bill that the governor just signed is called the “Compassion Act,” which is said to provide safe usage and accesses to medical marijuana oil for qualifying patients, but where is the compassion for my situation? Where is the compassion for others who are like me? Because I can promise you I am not the only one. Do we not also deserve the right to safely use and access medical marijuana in the form our bodies tolerate? Do our lives not matter? Alabama representatives told my husband that I was a “minority” and that “some people just have to suffer” I realize this is a said truth, life is unfair sometimes but that doesn’t mean that it must stay unfair. We do not want to have to use this medication. We did not choose these illnesses, but we will fight to choose to live, and we would love if you would stand with us to fight to make this life-saving medication legal in all its forms to all who truly need it. Would you please stand with us?
You may be shocked to know, but in the great state of Alabama, 90% of the medical community that I had spoken with had not even heard of mast cell activation syndrome before, and a large majority were very uneducated on tick-borne diseases. Many patients affected by tick-borne diseases or mast cell activation syndrome are often labeled as crazy, being told it’s “all in your head” and “antidepressants should help,” all because their doctors are uneducated on the matter. Many patients have even been admitted to psych wards against their will, and if you think this couldn’t possibly happen to you, think again. When this all started, I heard so many crazy things like “it’s anxiety,” so I asked, “Does anxiety make your face and throat swell?” The allergist said, “Well, no, it wouldn’t. Honestly I can’t give you an answer because it’s over my head.” And then we could even go back to the surgeon who refused to do my surgery because my conditions were “made up” in my head because he had never heard of them. I’ve been told often that I am too pretty to be sick or that I don’t look sick because I’m pretty. This is mind-blowing to me because I didn’t know that being pretty makes you invincible to illnesses. Sounds like a very silly statement, doesn’t it? So, when I talk about being a voice this is the exact reason why. Too many patients are being tossed aside because of the medical community not providing enough education on the subject, thus leading patients to experience hardships, harassment, and increased sickness due to lack of treatment. I now suffer from PTSD because of everything I went through at the hands of unknowledgeable doctors.
I was able to be seen by and am still under the care of a very knowledgeable and compassionate mast cell and tick-borne disease specialist. She found that I had a previous Lyme disease infection that was also cause by the tick bite! All I could picture was the infectious disease doctor at what was supposed to be the state’s best teaching hospital looking me in the eyes with an attitude and telling me the CDC should have never sent me to him because there is no such thing as Lyme disease or Rocky Mountain spotted fever in Alabama. I’m not sure how a medical institute can legally get away with turning patients away because they think that there is no such thing as tick-borne diseases in the state of Alabama, and believe me, I am far from the first person to have this problem. It turns out that a large majority of people have had the same experience with the infectious disease department of this teaching medical hospital, and it leads me to wonder how many patients are getting worse because of it as I did because they are told that Lyme disease and Rocky Mountain spotted fever are not in their state?
I have since founded Ticked Off Mast Cells which is a mast cell activation syndrome and tick-borne disease resource organization in hopes that others may find the information and medical resources that they need to get speedy diagnoses. That way, they do not have to wait years like I did before being properly diagnosed and treated. I also published a book called “Canary in a Bubble” that shares all the things that I have learned along the way. I also hope to bring awareness to the fact that medical cannabis is not a bad thing; in fact, without it I would not be here, and I think that my life as well as countless others’ lives are worth saving, don’t you? – Summer Carroll
