A teenager’s story: Born with Lyme disease, finally on road to recovery
By Elizabeth Hancock
My Lyme disease story begins before I was even born. It starts with a nymphal tick, no bigger than the tip of a Sharpie, that infected my mother and changed the course of my family’s life.
A few years later my mom, still undiagnosed, had my brother, Tommy, and then two years later, she had me. From birth on, my brother and I were continually sick.
My mom persistently worked with the gastroenterologist, allergist, ENT, ophthalmologist, dermatologist, occupational therapist, physical therapist, speech therapist, and pediatrician to help us.
When I was a baby, my depleted immune system triggered several autoimmune disorders. I looked malnourished with a bloated stomach. By the time I was two, I was diagnosed with celiac disease.
A year later, still unaware of my Lyme disease, I was re-infected by a tick. Following the bite, my eyes crossed and I experienced headaches, back pain, night sweats, and even a small seizure. By the time I was four years old, we all had developed late-stage Lyme.
I used bifocals, my brother experienced multiple emergency visits for central nervous system issues, and my mom’s symptoms worsened considerably. She felt as though she was detached from the world physically and mentally. She experienced horrific tremors and pain from head to toe, and made many emergency room visits for shortness of breath. She couldn’t lift her head, get out of bed, or raise her children.
What pains me most is that this lifelong suffering could have been avoided had doctors listened to her and diagnosed us earlier. Even though we lived in a Lyme-endemic area on the east coast, finding a doctor that was knowledgeable and willing to treat us was like looking for a needle in a hay stack.
For years, although my mom consulted many orthopedic, rheumatology, infectious disease, and primary doctors with her classic Lyme symptoms, they always diagnosed her with something else.
Top specialists in New York City for neurology and rheumatology failed to recognize what was really wrong with her. My mom even specifically requested to be tested for Lyme multiple times, and the few doctors that agreed ran inappropriate tests that provided inaccurate results.
She had MRIs, CAT scans, spinal tap, bone density, nerve conduction tests, and many other labs and procedures, in an effort to determine what was the cause of all of her health problems. Unsure of the root cause, doctors began treating her as if she had ALS, MS, or fibromyalgia, with very strong narcotics.
My mom kept searching for answers and finally found a rheumatologist who was highly regarded in the Lyme community. Her appointment with this doctor lasted several hours and was a very in-depth exploration of her issues. They evaluated all of her records and completed the appropriate labs and brain scans for tick-borne diseases. She was positive for Lyme, Babesia, Bartonella and Ehrlichia.
Having been diagnosed so late, my mom was completely debilitated and had severe brain inflammation. Soon after her diagnosis, my brother and I were appropriately tested and found positive for Lyme, Babesia and Bartonella.
Finally, after a ten-year journey, we were all diagnosed and put on a rigorous treatment plan that included weekly visits and three years of PICC lines.
Fortunately, we had wonderful family support like our cousins, Brenda and Carol, who dropped everything to come live with us. My grandparents helped us with our homework, bathed us, and drove us to school and appointments. My dad supported the family, took care of my mom and did everything he could to ensure that my brother and I had a normal childhood despite the obvious tribulations.
I am lucky to have this kind of family support (especially my mom’s persistence), and I know without them I would not be on a positive road to recovery.
Elizabeth Hancock is entering her senior year in high school in Columbus, Ohio. She hopes to continue her education in college and work in Washington D.C. someday.
The story of recovery is inspirational. It was mentioned that the mother has severe brain inflammation and horrible tremors. I wonder if the tremors were related to the brain inflammation. If so, is there any information available on what the treatment was?
Damage to certain neurons may be recoverable utilizing hyperbaric oxygen. Given that Lyme is Manganese dependent it is possible there is a lot of Manganese sequestered in her brain which is toxic in high levels, so it might be a good idea for a trail of Mesalamine, which will protect the neurons from the manganese should it be there. Now this is assuming he has no more active Lyme infection driving this.
Thanks Dr. Stroller….If I understand correctly, the presence of the bacteria results in higher than normal levels of manganese which can be toxic and possibly causing the brain fog and tremors. Does the Mesalanine temporarily block the effects of manganese until the bacteria can be removed from the brain? Are there herbal supplements which may have similar effect on manganese. My wife after several courses of antibiotics got C-Diff from the treatment. Her LLMD started her on cats claw and silver. She read a book by Stephen Buhner. She followed his protocol to the tee and in about 6-months was symptom free. She thought she was done with tremors and her life returned to normal for about a year. The tremors and lack of energy returned last Sept. She started the Buhner protocol again but has not been able to get her life back yet. Really not sure how she got better the first time. I have read the incurable me and the discussion on hyperbaric oxygen and Alinia. She has not tried hyperbaric oxygen but did try the Alinia; it did not seem to help. Still looking for answers.
Would love to see the research on which Dr. Strollers comments are based.
I too was born with Lyme disease. My family and my doctors all dismissed it. I was diagnosed with so many other things until finally at 55 yrs. I got the right diagnosis. About six years of treatment and I felt better. My children and siblings deny that I have Lyme. They have no idea what I went through my whole life. It affected my heart and my brain. And I believe my mothers am MI what’s the Lyme related. People always that my mother and I were strange. No we were just Lymeies.
Fortunately I have great doctors who worked with me for many years. Their faith and believe in me and pulled me through.
I’m sorry for all those who are born with Lyme disease because it so misunderstood !!!!?
I personally know this sweet family and reading Elizabeth’s portrayal of what they all went through just breaks my heart. They are so strong in spirit and saying the mom is persistent is an understatement! She advocated for her family and advocates for all families dealing with this horrible disease! God bless you guys!
My wife has suffering with the neurological symptoms of lyme. Her symptoms are so similiar to the mother in this story. My wife has tried many many different supplements in an effort to diminish the horrific tremors she has everyday. What got my attention, in this story, was the inflammation of the mom’s brain and she also suffered from the tremors. One of the comments posted by Paul is too much manganese in the brain can be toxic. I am not sure if inflammation of the brain or too much manganese will result in tremors? Before my wife was diagnosed with lyme, the neurologist could not find anything wrong with her so they referred her to a psychiatrist who tried all the anti-depressant drugs out there. All of them made her tremors worse. In the story, the mom found a rheumatologist who seem to help. Was the mom able to get any relief from the tremors after seeing the rheumatologist? My wife’s LLMD has not been able to help.
Please feel free to contact me directly marjiehancock@yahoo.com
I’m so thankful our daughter has decided to advocate and raise awareness for lyme disease. This story only touches on the true path, like so many others with later stage know to well. I can not tell you how many times doctors said it was something else, or ran inappropriate tests. A few doctors did say, we think you have lyme disease please get tested. Then they’d stop returning our calls or meet with us to explore it further. We had almost every symptom between the 3 of us in the guidelines, so many neuro issues, weakened immune system. I’m so thankful to have finally found true doctors that fought, researched and helped us on our road to recovery. The first few years of treatment we had to also see so many other lyme aware doctors for each part of our body that had been affected (Neuro opth , cardio, immunology, so many areas, I really reached out to those that spoke at conferences and traveled all over to make sure we were doing the right things and have baselines as we healed). It truly takes a combination of antiobitics, supplements, changes in life style, testing to really make sure the supplements are specific to your own body and not disrupting one of your strains. It took me 13 months until I could walk slowly one mile on my treadmill, initially I lost ability to use my arms (even hold my purse or write a check, so many things one takes for granted).
We are all doing so much better now, just making sure to stay on top of it. Thankful for friends that stood by us as we healed (not many truly understand the complexity of later stage) and family that was there for us every step.
If we can help one person not go down our path, that is the reason we tell our story. Thankfully we’ve had multiple people tap into us (and my parents) for suggestions. We welcome helping out anybody since we know to well what can happen.
It is wonderful that you are willing to share your experiences to help other get back on their feet when dealing with this disease. I am wondering if you would share any insights as to what you feel may have been the turning point to your recovery. My wife first started having symptoms back in February 2014. It took a year of seeing all kinds of specialist of which most were unable to help my wife until by accident we came across a LLMD referred to us by a friend. We still did not have any clue my wife was dealing with lyme. Even the CDC doctor at Baylor University was certain my wife did not have lyme before seeing the LLMD. in Jan 2015, my wife was diagnosed with lyme by the LLMD. It was a relief knowing what was making my wife sick with deabiliting tremors and cognitive brain fog. We live in a major metropolitin area in Texas with a state of the art medical facility so you would think we could find the best of the best to help with this disease. Not so; neurologist from Baylor concluded that their was nothing wrong with my wife’s brain but today she still cannot get through the day without tremors all day. There are treatment facilities in various locations around the country but none in Texas that I know of. My wife has been through the best of antibiotics and herbal supplements by the LLMD but still this doctor has not been able to recommend a treatment plan that would bring her some relief from the horrible tremors. People do recover from the symptoms of lyme and return to normality of life but it is so hard to find established protocols for recovery. As prevalent as this disease is, I am finding very little understanding among the doctors in the medical community about Lyme. Most of only heard about lyme but know nothing about how to help people with the disease. Thank you for sharing because collectively we will overcome this dreadful disease.
Since you are in Texas, I recommend you contact the following Texas-based advocacy and support groups for resources in your area:
https://www.txlda.com/
https://www.facebook.com/groups/260106244032955/?ref=br_rs
https://www.facebook.com/groups/NTXLyme/
–DKL
richard,
twice now i’ve lost a long note i typed you about tremors when i attempted to COPY them so if i lost it, i’d have a backup!!! grrr.
i’ll attempt to give MOST of what i’ve typed twice but don’t have energy to recreate everything!!
NEVER GET ON MED AMANDITINE, parkinson’s med; it causes HALLUCINATIONS and more!!!
it is addictive; jack couldn’t get OFF it; side effects were WORSE than the hallucinations, etc.
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late husband had tremors, diagnosed with essential tremors…. symptoms increased, diagnosed 5 yrs. later with PARKINSON’S DISEASE … this lasted total of 10 yrs.
later in disease he was having VISUAL/VIOLENT HALLUCINATIONS like robin williams had.
this is LEWY BODY DEMENTIA with the hallucinations symptoms.
i kept telling jack’s neurologist of visual / violent hallucinations but still he did NOT diagnosed him with lewy body dementia!!
this is disappointing as he is pres. of iowa mds and/or over neurologists in iowa!!!
read another detailed note i left about jack’s brain autopsy results please!!
after finding out jack’s autopsy showed both LYME & LEWY body dementia, i then approached our local large MINI MAYO, clinic typing the BOARD OF DIRECTORS a note about jack’s autopsy results.
dr. tom grier, minn. pathologist, has put together 3-1 hr. programs on:
o basics of lyme disease;
o lyme and MS;
o lyme on the brain.
i suggested they get him to do 3-1 hr. SKYPE training sEssions for GROUND ROUNDS to train all their drs. the symptoms of lyme vs. ms, etc.
jack’s neurologist again was PRES. OF CLINIC BOARD and didn’t have the decency to reply to my polite request!
clinic has web site and CONTACT US, so i used that to again contact them explaining they never got back to me about tom grier’s skype training. AGAIN NO REPLY!!! sucks royally.
i’ll continue being the squeaky wheel and perhaps approach iowa medical board about this situation.
betty gordon, iowa lyme activist
widow of lyme & lewy body dementia patient whose brain autopsy showed these results as well as found a FILARIAL NEMATODE PARASITIC WORM in the brain. worm had lyme disease also!
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Betty, how did u get an autopsy done?. Did u request it and request brain tissue be tested for lyme? Just want to know. Im 44, but want to write requesting autopsy in my will god forbid something happens. My 80 yr old dad has/had lyme..now in denial and maybe start of dementia. My husband and kids have it too. I just want to prove to the crappy doctors that lyme can be chronic even if i have to donate my body for research. Tnx johanna
johanna, happy to share all my info with you & others reading this!!
i contacted dr. alan macdonald, flor. pathologist retired, to see if it was TOO LATE to get a brain autopsy done after i donated jack’s body to des moines, iowa osteopathic college for study by 7 areas of medical students.
IF they preserved the brain right, YES, you can.
fyi, DM college removes ALL BRAINS of body donators, preserves them, and students study them too!!
alan, had me complete paperwork that jack’s entire brain be RELEASED from dm univ. college and sent to paula pierce, owner of a small lab in norman, okla, has does ALL DURAY RESEARCH FOUNDATION initial work.
she cuts slices of the brain and then sent them to alan in florida. so SHE was the 1st one to discover jack’s worldwide making news!!
dr. tom grier, minn. microbiologist, is now EXECUTIVE DIRECTOR of PAUL DURAY RF.
he has a form he can send to you to be completed. email tom at:
donatebrain@gmail.com
NO BRAINS ARE TO BE SENT DIRECTLY TO PAULA PIERCE!!! everything has to go thru tom grier and the proper paperwork to be completed.
they’ve had brains sent; NO NAMES, ETC!!!
2 of us behind the scenes supporters of duray research worked on this form to get it updated so it could be used nationwide & for other countries!!
so email tom explaining your wishes to have him send you this form ok.
there is a cost to have the work done on the SUPPLIES NEEDED around $2,000+ per brain.
it was more for jack since they made major discoveries & did much more testings after that where they found the filarial nematode parasitic worm in this brain!
they DONATE THEIR LABOR FREE!!!
tom also has it that if the family does NOT comply with the brain donator’s wishes, they still have to pay the fee to have it done!!
so you need to make sure your DESIGNATED FAMILY REPS will comply with YOUR wishes!!
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funeral home directors CAN remove the brains i was told, fyi only.
also, when i was donating jack’s body, it was on the day he was dying! i’d started this many months earlier; someone didn’t follow thru and i forgot to keep on them!
duray does brain autopsies for:
lyme disease, ms, parkinson’s disease, lewy body dementia since alan macdonald’s grandpa died from that, and glioblastoma which VP BIDEN’S son died from and john mccain was just diagnosed with.
alan was given the slides from his grandpa but until jack’s results were done, he has finally had them looked at since it was a 1 time thing only to process these 1 of a kind from decades done years ago!!!
this was more than you asked for, but when i get going, i’m on a roll and it just keeps flowing out of me!! LOL
betty gordon, iowa widow of lyme/lewy body dementia/parkinson’s/cancer of lung/liver patient
Thanks Betty…NO, not too much info. While I feel medical science will never move fast or far enough to find a ‘ cure ‘ in my life time…any hope of factual testing and treatments that help can only come because of people like you and your husband. So, Thanks !
Dixie Reimold,
to be completely honest when jack’s mind was still working fairly well, i mentioned about having an autopsy done on him; brain wasn’t mentioned.
“betty, i don’t want to be cut up!”
but due to his STRANGE behavior as his various diseases progressed, i had a personal NEED TO KNOW what was going on with his brain.
he’d wake up at night yelling/screaming that people were trying to KILL him. he was NOT in any wars!
all night long his behaviors changed from laughing to himself for an hour or more;
giving instructions as a highway paint crew supr. to crew painting the state highways;
cussing folks out;
talking to 2 imaginery foreign boys who couldn’t speak english for 2 weeks, and i typed up these comments as they were occurring.
i read his comments to him the next day; don’t ever do that again; i did not!!
so i did not honor his wishes on this and so glad i did since his brain made WW history having lyme & lewy body dementia.
if you want to know more or see his brain slides which look like planets, colorful, go here to this link where the ENTIRE screen are the results of jack’s findings.
the last link is the story i wrote of jack’s/my combined 83.5 yrs. of chronic lyme and our symptoms.
https://durayresearch.wordpress.com/our-work/lewy-body-dementia-a-global-theory-of-neurodegenerative-disease/
betty gordon
format would not let me reply to your post so i posted where i could post my reply comments 😉
We have known this family for many years, as my son has been dear friends with Tommy since elementary school. Marjie, is not only an amazing advocate for her family but for others with Lyme. Having known them since the elementary years, I had no idea Marjie was diagnosed so late and because so, was so debilitated. Like with so many diseases, if symptoms are diagnosed early and if patients are listened to intently, recovery would be quicker and healthcare costs would probably be less. Elizabeth, you did a beautiful job in sharing your family’s experience.
For Lyme disease to be transferred in utero or by sexual contact, the bacillus would have to thrive in a human host. It would have to reproduce to be viable beyond its lifespan. As far as I know, its life cycle requires a tick for development and transmission.
Clarification on this point would be helpful.
Gestational Lyme has been thoroughly documented. See: https://www.lymedisease.org/wp-content/uploads/2014/08/Image22-Gestational-Lyme-Bibliography.pdf
Sexual transmission is strongly suspected by some doctors and patients. More research is needed. See: https://www.lymedisease.org/lyme-sexual-transmission-2/
–DKL
Babesia too. Mycoplasma.
Thank you Elizabeth!
To this wonderful family,
Thank you for sharing your story. Although you suffered much it’s so amazing to hear you had enough people willing to sacrifice and love you all through it and a persistent Mama.
I also have Lyme and am suffering greatly and few understand even when they try but it’s deepening my faith and trust in God. I have a ways to go as I’ve just started treatment but on I go encouraged by all the stories until I get to the other side.
I have tremors, seizures, body aches all the time, my brain freezes up a lot(don’t know how else to describe it), and unable to do simple things as my hands and body are weak. My neck is real stiff. At my worst I could barely walk and my legs were beginning to go numb and were cold to touch. I’m completely exhausted all the time. This has changed me and I’m so thankful for all the little things now.
All sounds very similar. Your right not many understand, thankful fur my parents who ALWAYS stood by me ( us). Your symptoms sound so similar. Trust in god, and advocate for yourself. Good luck.
This is my story almost to a tee and my son, who is 19, has suffered chronic fatigue and GI issues since birth. After begging for a Lyme test, they ran it and the first test was positive but the second one is negative so my doctor won’t treat me. I had an MRI which shows T2 focci on my temporal and frontal lobe but the neurologist says that is normal, even though I suffer from serious focusing issues, eye issues weird headaches and memory issues. Just spent the night in Cardiac ICU because I have chest pain but all test came back normal except low platelets and low BUN and CR, oh and a slow HR. I am so frustrated! I have been dealing with this for years and have had lymph nodes removed 3 times ?What lab did you use that gave you the positive test? I live in NC and know I have been bitten by ticks over the years. I also spent all my summers living in MA
Sounds very similar. Please email me at marjiehancock@yahoo.com
The only lab I know that can detect Lyme the most effective is called IGenex in Palo Alto, CA. Your doctor can order the kit and draw the blood to send off to them. I am waiting for mine to come back. Unfortunately it takes about 4 weeks, but it is worth it.
Desperately trying to get referral to LLMD in Texas, but getting nowhere. Can anyone help?
dorcas and EVERYONE,
please go to this 24/7 site having our llmds/nds/etc. who are OUT there: speaking at conferences, having websites, and quoted in newspapers/articles:
https://sites.google.com/site/lymedoctors/texas
we have names for MAJORITY of states; those NOT wanting to be public nor having a web site are NOT included in this.
*****************************************************************
LUCY BARNES/TINCUP contacted each person on this list; many more llmds have ASKED TO be included in this.
i shared all my names with her when NO. 1 KIDS dr. charles ray jones was off work for his own surgeries.
betty gordon, iowa activist
48.5 yrs. chronic lyme
35 yrs. misdiagnose by 40-50 drs.
between my late husband/me, weve had chronic lyme 83.5 yrs!
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my husband’s brain autopsy showed he too had LYME & LEWY body dementia causing violent/visual hallucinations like robin williams had.
he’s to be written up in an unknown scientific medical journal with ME AS 1ST CO-AUTHOR over 3 medical folks involved:
o dr. alan macdonald, pathologist, florida, who discovered this doing the work, and now retired FT but didn’t get his part done before he was having his own health issues;
o paula pierce, owner of excalibur labs in norman, okla. who did the inital work on jack’s brain cutting slices, etc. and was 1st to discover jack’s worldwide discovery of these 2 diseases NEVER found before !!
o dr. tom grier, minn. microbiologist, who was to write this up.
i’m now working with marna ericson, univ. of minn. dermitology dept. where she’s checking jack’s brain for bartonella, etc. to hopefully PUBLISH jack’s findings in future as she did her own son’s vector-borne diseases!!
i will have my blood tested in future from GALAXY LAB, who specializes in bart!!
elizabeth, thank you for sharing your story as a child born to an infected mother, and to your mom as well for her comments above.
god bless you both and better quality of life to each of you and to EACH of readers here!
betty gordon
Hi. I am from Puerto Rico. I was diagnosed on April 2017 by a functional Dr in Hartford based on Horrowitz questionary and Igenex test. Theres no Dr in this Island who knows or even believe I have lyme disease. I have contacted Ilads but I would really appreciate if you can tell one of these special Dr.that really help you to recover. I am willing to flight and have a place to stay in New York. Thanks.
maurasi, please go to lymedoc.org … none for puerto rico but new york state is loaded with names for you. best wishes 😉
betty gordon, iowa
Thanks for your reply and info. I will look through this site. Have found two via Ilads but costs are too high and healthinsurance does not cover in USA. Symptoms are so similar to why some described. I think I got bite 20 yaers ago during a summer in Itaca, NY and I do think my son could have it too.
Please let me know of a doctor in south Africa that has knowledge of this disease i am on very strong pain killers and they keep saying it is fybromaialga and neuropathy
try ILADS HQ, barbara, executive director, lymedocs@aol.com asking her if she has anyone in your country.
otherwise, many in germany and some in adjacent countries! best wishes to you.
betty gordon, iowa activist
Thank You All for sharing…I, like all of you, tested negative for Lymes as I continued to go downhill, going from an independent healthy woman to moving bed-to-chair, with a completely opposite personality. During a 4 day testing stint ( fall of 2015 ) in a Boston Hospital, where it was proven once again how very healthy I was, ( now looked upon as an ‘ old woman looking for attention’. A young woman Dr. while looking thru my chart, made the idle statement…” I think you have Chronic Lymes” but didn’t actually write it up as, of course I tested negative. As I became more and more dependent and repeated testing ( over a year ) of every bodily function gave no reason for treatment of anything…I started reading everything I could get on Chronic Lymes…my Medical Dr. does not believe it exists. Hah! However, here is western PA. we do have a Lyme expert.( Dr. Joseph Joseph in Hermitage, PA. ) I did his extensive blood work and found I do test positive for several Lymes. He is about a 6 month wait for appointments and while waiting, I found ( yes, on FaceBook ) Dr. Bill Rawls ( in N. Carolina ) a victim of Lymes and misdiagnosed, who fought back, researched and put together an Herbal Therapy and Life Style Program that is AMAZING ! THE VITAL PLAN. COM.
Many of us can not tolerate heavy antibiotic therapy, Herbal Therapy repairs all body functions including your Immune System so vital to recovery. Please read what is finally ! coming out…so many folks so terribly misdiagnosed for centuries.
While this story is interesting,especially due to the possibility of in-utero infection , I was disappointed at the vague conclusion. Those of us with lyme or suspected chronic Lyme disease need more facts. We have read many anecdotal stories. I strongly believe that lymedisease.org’s main focus should be on lobbying for more research along with the needed funding!
Thank you for this story. I am forwarding on to a few friends with Lyme disease.
How were you able to afford treatments? How much does it cost to be treated for Lyme for months/years? It seems there is no information anywhere on this topic. I am feeling very hopeless.
I believe my children were born with Lyme as they were born and after my Lyme infection and i still have chronic Lyme. They have many strange health issues no one can explain. My youngest is the one i am most worried about , is there a reason one child would be sicker than another ?