TOUCHED BY LYME: One woman’s story of healing from chronic Lyme
Guest blogger Erika Arens writes about her eight-year journey with tick-borne illness.
I am very fortunate. Five years of treatment for chronic Lyme has left me with mild and occasional pain in my hands and feet, intermittent muscle aches and sometimes a muscle twitch or two. Sleep is more elusive than it used to be, but I’m also at an age where sleep proves a bit more elusive for many of us.
If you’d have seen me three or four years ago, moaning in agony, relentless pain and dealing with panic attacks, memory loss, insomnia, major depression, crushing headaches, constant abdominal distress, dysgraphia…the list goes on, as most of you know all too well.
I contracted Lyme in Rhode Island in 2006. It took me over a year and a half to get properly diagnosed, despite a classic rash, and to begin treatment. Because I reside in Colorado, where Lyme is not prevalent, I had to travel to Pennsylvania and California for my initial treatment – although I eventually found an excellent LLMD here in my own state.
When I look back on those six and half years of pure hell and five years of massive antibiotics – sometimes up to four different ones at a time – as well as IVs, supplements, dietary restrictions, meditation, and various other therapies, I wonder why my treatment regimen was effective but why others aren’t so lucky.
Much of it was a persistent quest for answers and for a return to health. You see, I didn’t blindly follow any doctor’s advice. I sought answers from multiple LLMDs as well as other health professionals. If one recommended another treatment, I discussed it with my own doctor to work it in to my treatment plan.
I also questioned what she prescribed and why. I asked questions. I read every book I could get my hands on about healing Lyme and bolstering the immune system. I looked things up on the internet. And I formed a relationship with my doctor that allowed me to have a say in my own recovery. If I hadn’t, I’d still be very, very sick.
As it turned out, either the Lyme disease or the treatment I undertook triggered celiac disease. Many my symptoms were a result of gluten poisoning my system. Instead of blindly trusting my Lyme doctor when she told me, “Lyme distresses the gut,” as more and more drugs poured into my system, I questioned everything and educated myself along the way.
Eventually, I saw a gastroenterologist and sought other answers for my relentless gastrointestinal problems and extensive weight loss. I also regularly saw my general practitioner and kept her informed of my situation. Both were instrumental in getting the proper diagnosis of celiac disease and treatment for this co-morbid condition that hampered my recovery and contributed to my symptoms.
Support of different kinds
During my Lyme treatment, I saw a variety of supportive health professionals, including a naturopath. She assisted me with nutritional support and supplements to bolster my immune system, restore my energy, and protect the delicate micro floral balance in my gut from the harsh antibiotics.
There were also chiropractors, massage therapists, and even employees at Whole Foods who were well-educated in nutritional support and probiotics.
In addition, I read books about how the brain is instrumental in healing the body – the belief that I could and would be well once again. I meditated. I exercised as much as I could. For a year and a half I forced myself to walk a quarter mile a few times a week which resulted in days of excruciating muscle pain.
Today, I am able to walk five miles a day and have begun to work in some jogging. I swim several times a week, too. When the weather permits, I’ll take my dusty bike down from the ceiling in the garage, clean it off, and start riding again.
Last year, I accomplished a personal goal of walking 1,000 miles. There wasn’t a single day that I didn’t think of all the Lyme patients out there still suffering. When I started this journey, I could only walk a tenth of a mile.
No stone unturned
My point is this…leave no stone unturned in your pursuit of wellness and don’t assume it’s all Lyme. Your body might be a mess from Lyme attacking your system but you need to support it fully.
Gentle movement and exercise is crucial. Proper nutrition and supplementation are vital. Keep an open mind. Search for support. Seek out answers. And, do this with a sense of balance and scrutiny. If something sounds too good to be true, it probably is – and if it sounds too wacky, it probably is that, too.
Healing from Lyme is an arduous journey but one that you needn’t take alone. Find a support group. Many hold meetings, if you are able to attend and others provide online support. Read as much as you can about your disease, treatment options, alternatives and supportive therapies and decide what’s right for you.
Finally, don’t be afraid to seek a second opinion. There are different approaches to treating chronic Lyme. Find one that works for you and that you believe in. Look past the immediate with trust and hope for a healthier tomorrow. Question everything and stretch beyond yourself to reach your goals.
You’re stronger than you imagine. Leave no stone unturned in your quest to be well. And that journey of 1,000 miles? Well, you know the rest…so keep putting one foot in front of the other.
Erika Arens lives in Boulder, Colorado with her husband and two teenage children and is currently pursuing a dual master’s degree in Project Management and Healthcare Administration at Colorado State University. You can contact her at email@example.com .
- April 23, 2014 at 7:40 am
Congratulations, Erika, on your recovery. Your article is a timely one and I appreciate the reminder to think outside the Lyme box and also consider other contributing causes.
- July 13, 2014 at 4:47 pm
AMEN I am not sure when I got bitten by a tick. I experienced no bulls eye rash. What I did experience, seemingly from out of the blue, was bone-deep achiness and endless fatigue and anxiety.
As a single parent, marathoner and hard driving, middle-aged sales rep for a major global pharmaceutical company, I told myself this was normal. After all, my work had me in and out of doctors’ waiting rooms all day long — of course I would be prone to picking up whatever the patients were bringing in. Plus, wasn’t this what all “women of a certain age” go through?
One fall day in 1989, driving to a sales call, I literally fell asleep at the wheel. I awoke after colliding with a tow truck. While the truck driver was fine, I suffered a back injury and my body ached worse than ever.
The accident really scared me and served as a virtual “wake up” call to get help. Surrounded by doctors at my job, I had easy access to a wealth of professional advice and diagnoses. And everybody pretty much said the same thing: It was all stress and anxiety.
Thus began a cycle that always began with a deep pressure behind my eyeballs. I’d visit my doctor, who would diagnose a sinus infection – never mind that my nasal passages were absolutely clear. Within a few days on antibiotics, the pressure would lift and I would feel better. But soon the symptoms would reappear, and the cycle would begin again.
And that’s the way it was day after day. It was like that tow truck kept hitting me again and again. I popped antibiotics and antidepressants like candy. They were my lifeline, lifting the pain and anxiety and weariness just enough to keep me going.
In 2005, attracted to Colorado’s sunshine and clean air, I moved my family to Denver. After a short hiatus, I took a new job. I was still calling on doctors, but this time they were integrative and holistic, using many different kinds of nontraditional therapies. It was here that I learned about neurotransmitter testing.
As a pharmaceutical rep, I already knew that neurotransmitters are brain chemicals that act as messengers in the body, and that they are required for proper brain and body functions. From these new integrative physicians, I learned that since physical and psychological challenges can cause variations in neurotransmitter levels, it’s helpful to measure them.
Holding out little hope, I agreed to neurotransmitter testing. My results came back high for inflammation, glutamate and GABA. As a result, my doctor urged that I start an anti-inflammatory diet, which I expected…but I never expected she’d also recommend additional testing for Lyme. After all, that’s something campers in Wisconsin get, right? I spend most of my time in my car in Colorado!
Needless to say, I was skeptical. But I was also sick and tired of being sick and tired. So I agreed to what my doctor called a “one-two punch”: traditional Western Blot testing, which detects Lyme antibodies, plus a new test called iSpot Lyme, which measures Lyme antigen-specific T cells. By testing for both antibodies and T cells, she told me, there would be a better chance of finding where Lyme might hide. (Full disclosure: iSpot Lyme was developed by a lab affiliated with my employer.)
My results: I was definitely positive for Lyme, with my iSpot Lyme test showing over five times the limit for a positive diagnosis. Under my doctor’s care, I immediately began aggressive, targeted treatment. I have been through many courses of Antibiotics, and other medications and herbs to address the inflammation, biofilms, candida parasites and co-infections. I have recently been adding frequency treatments.
Recently, I was retested. Although the Lyme bacteria are still present, they are now at much lower levels. Better yet, the deep achiness and fatigue have subsided and I am nearly off my medications. I am beginning to get my life back.I am learning to support my immune system and pray I can find full remission of this dreadful disease.
Where did a city girl from Denver get Lyme? It’s hard to say, but as I trace back my symptoms, I recall they started shortly after a business trip to Tennessee. After three weeks of sales training, I unwound with a leisurely bike ride through a cool, deep forest. Who knew that what should have been a relaxing end to a long business trip would be the beginning of a quarter-century search for the source of my pain?
Through this journey, I have become a passionate advocate for Lyme disease testing. It’s a common misconception that if you don’t live in New England or the Upper Midwest, you can’t get Lyme. Today, everyone is so mobile that even if you are fortunate enough to live in a place with few ticks, you probably still visit places that do. And all it takes is a single bite from a critter smaller than a poppy seed.
Lyme mimics symptoms of other diseases, so it’s hard to pin down. Like me, if you don’t get the famous bulls eye rash, most doctors won’t diagnose it. And, like me, if you’re diagnosed incorrectly, it can lead to years of suffering.
The best way to be sure is to get tested. It can give you peace of mind knowing whether you are positive or not …wherever you call home.
- February 1, 2017 at 5:38 pm
Hi linda, i just read your comments ..i also live in colorado, south denver area,lone tree. I wondered how you are doing and was thinking of starting a support group…love to talk if you’re able and willing:)
- April 23, 2014 at 2:02 pm
So happy to hear you had good results with the LLMD, other doctors, and alternative medicine. May I ask where you live in Colorado, and who is your LLMD? Thank you!
- April 23, 2014 at 5:16 pm
Although I know your story first hand, reading it brought tears to my eyes. I remember how incredibly ill you were; I remember so vividly both of us wondering if healing was really possible and look at you now! You are an amazing woman and living proof that no matter how ill one is, healing is indeed possible.
- April 23, 2014 at 7:00 pm
Your perseverance is a lesson for the Lyme community and for all of us to engage in our health care, question everything–even when it’s coming from a medical professional, educate ourselves, seek to care for ourselves (through lifestyle, nutrition, attitude, healthy relationships), and ADVOCATE for ourselves and those we love. Oh, and have a sense of humor–you are rich with that! You are an inspiration. With love, Your Sis!
- April 24, 2014 at 8:42 am
Thank you so much for writing your experience….I have been sick for 3 years but only last year diagnosed………have been on antibiotics and have developed thrush also…difficulty walking due to my knees and constantly tired, etc. etc.
Thank you so much for writing so that I can see there is hope (because some days I seriously doubt it) Thank you
- April 30, 2014 at 5:45 am
I’ve had Lyme related insomnia and fatigue since childhood and in the past 3 weeks am having success with Rife and ozone.
Best to all
- May 14, 2014 at 11:45 am
I have heard that rife machines really work. How do you find a rife practitioner?
- May 4, 2014 at 12:34 pm
Lovely tribute to a journey so many of us share. I am on my second relapse and agree with you wholeheartedly. My advice to newly diagnosed Lymies out there is similar- the worst thing you can do is nothing! Your life IS worth fighting for. There is no one cure. It takes a lot of approaches, immune support, dietary supplementation/restriction and a myriad of antibiotics. Most of all it takes belief in yourself that you can win this battle. Your life may never get back to what it once was. Lyme changes our futures. But, new dreams can be hatched as new inner strength is kindled. Feed the will, and you will find the way.
- May 5, 2014 at 9:02 am
WOW. I feel like I just read my story… gut issues, muscles, joints, and still deal with horrible neuropathy in my hands, legs, feet, and toes… In the last 2 months, I starting exercising at the local gym, have been walking just about everyday. The walking is an important part of recovering! In the beginning, I would awake about 7 a.m. but was back in bed around noon every day. Now I awake about 7 a.m. and to bed between 9 – 11 p.m. Erika is right. Never stop researching, talk to every health professional you can from every aspect of the medical community. I’m lucky, I have a sister who is a Dr of Oriental Medicine-acupuncture, massage, homeopathic… She helped me a lot. You can not give up. When a Doctor says, “…you’re just looking for drugs”, tell him if you wanted drugs you’d head to the street corner. Then stand up and tell him/her they’re fired and move on to the next one. There are very compassionate Doctors that will treat you, network, network, network. The internet is your best research tool. Erika is right, if you WANT to be well you will BE well. Welcome to a new norm!
- May 13, 2014 at 1:16 pm
My daughter Jennifer is today dying of end-stage Lyme after a 25-year struggle that has become pure hell. She lived for over 10 years in Boulder, where she was denied disability assistance, despite her total debilitation. No treatment has ever helped her…she has neurological Lyme + 5 co-infections. She spent thousands of $$$ on “medical professionals” (including in Boulder) who knew nothing and did nothing for her. For many years her Elisa test results were false-négatives, so for years she was told “it’s all in your head.”
Now suicidal, Jennifer did agree to try one last thing: cannabis oïl extact treatment…not in Colorado (where it is outrageously expensive and we are today virtually bankrupt from the years of worthless treatments that did nothing to help her). She has gone to Eugene, Oregon…where the state of oregon’s medical cannabis program actually provides her with the highest quality oïl free of charge.
- December 17, 2016 at 3:45 pm
Im 25 i got lyme when i was 6 id be kinda interesred in talking to her real sorry to here that
- May 14, 2014 at 2:43 am
Sorry, but the lyme spirochètes and co-infections don’t give a damn about how much we “want” to regain our Heath. My daughter led an entirely non-toxic life, did all the research, spent décades in determined self-help and “wanting” to get well. But lyme bacteria are the most intelligent organisms that exist, far more intelligent than cancer cells. The only way to defeat them is to work in accordance with our God-given endo-cannabinoid system and by ingesting cannabis plant oïl.
- June 21, 2014 at 3:47 am
I was diagnosed with lyme/bartonella in 2002, thank God the tests came back positive, as ill as I was. I say that because I was 62 years old, and many Drs will attribute felling fatigued as age-related! I took care of my self all the time
physically, mentally and spiritually. I was treated with antibiotics and alternatives by a wonderful Naturopath, who is now retired, but was replaced by another wonderful man. Eventually I recovered from Lyme. What I mean by that is the brain fog subsided, the pain subsided in back, legs, hips, etc. Heart palpitations stopped, etc. However, when I was 70 years old, I caught mono and it wasn’t from kissing! I imagine my immune system continues to be depleted, and that is why this happened. I have been under a lot of stress the past two years, and if I wouldn’t of read these comments which you wonderful men and women have posted, I had no idea one could have a lyme relapse without getting bit again! I have had many losses, etc the past two years and this year I got flu, sinus infection, mono relapse, and then lyme relapse. I have the brain fog again, only this time I have this horrendous chirping of crickets which feels like its in my brain, has anyone with lyme or a relapse heard of this. It is getting better, because I am being treated by my Naturopath again. The exhaustion is back, the lyme fog, not much pain this time and those never ending crickets in my brain and ears. Yesterday when I had a hearing test, the results came back I was stone cold deaf, and I hear very well!!!! I am scheduled for an MRI. Thank you for taking the time to read all of this. As we all know, “it takes one to know what we can all relate to. I have a wonderful Naturopath if anyone would like his name. I live in NH, he is in MA.
- September 19, 2015 at 10:26 am
Hi I have Lyme may I have your naturalpaths phone number thankyou
- June 21, 2014 at 2:36 pm
Thank you for your post Erika. I am 5 years into my fight (after 20+ years of infection manifesting as chronic pain, I had a bad neurological collapse in 2009 I have only partially come out of), and it is always helpful to hear from another traveler on the road who can see out ahead for the rest of us. I agree that, for as long as you can stand it, you have to be an active agent in the process. I am trying to both maintain an unwavering dedication to finding the right combination of treatments to get me substantially well, and to accept my present state enough to cope.
- June 25, 2014 at 7:57 am
Is there a way you could prudently let me know the name of your LLMD in CO. My son’s in Denver and tested positive on both the titre and western blot to lyme 4 months ago.
- September 29, 2014 at 10:27 am
Erika, My daughter lives in Boulder and I am here visiting this week because of her illness. Is there any way you could contact me and share the name of the specialist you found here in Colorado. Your consideration of this request is greatly appreciated.
- December 24, 2014 at 5:32 am
HAs anyone had experience with the Zhang protocol of traditional Chinese herbs. My 13 y.o. daughter has been on them (handfuls) for a couple of months with no apparent change. Thanks.
- March 25, 2015 at 4:29 am
Hi, I live in Rhode Island and have been treated for neuro lyme for three years. What would you say helped you the most.
- September 9, 2015 at 1:09 pm
A positive attitude
- December 26, 2015 at 9:26 pm
Erika, I live on the Utah/Colorado border would you e-mail me your LLMD’s name, I have been battling Lyme’s for 5 years and yes like you if you would of seen me 2 years ago, I have gotten better but it’s one step forward two steps back. I have been traveling back East when possible to see a LLMD that could help me. I would love to have a specialist a lot closer to home where I could see on a regular basis. My email is: firstname.lastname@example.org
- March 10, 2016 at 8:41 am
Erika, Thanks for posting these comments. I have been through my 3 yr. battle and have been thru the ringer with all the treatments and medical stuff. I finally came up with a protocol that works pretty well for me. I take Interfase Plus by Klaire Labs, and they seem to break up the biofilm enough so the lymies don’t congregate to one spot in the system. I have done many different protocols thru the years and some were very expensive and didn’t help. I have yet to try the cannabis oil but ill give that a shot next. I did a scotch/pot protocol that worked okay for a while, but the wife hated it!!!..lol…
I have been thru many battles in my life but I liken my Lyme infection to a Major War that seems to have no end.
I look forward to getting my life back. It is a shame that this disease was created as a biological warfare mechanism by our fellow man.
Our species is psychotic..I bet the Red Cross is totally unaware that about 90% of all the blood they have on hand is infected with Lyme, as well as other stuff.
- September 24, 2016 at 1:12 am
Hard for me to believe anyone got diagnosed by an MD. Took me 47 years to narrow it down to the fact of Lyme after seeing dozens of MDs. None of them would acknowledge any of the symptoms. As soon as “chronic sinusitis” left my lips they were angling for bipolar or worse. It destroyed my career, lost my home and everything else – and THEN it turns out my wife caught it also during the 50s or 60s in NE Montana, for sure deer ticks are not the only ticks that carry it. You know it, all three children were congenital Lyme. All of these people have been thoroughly and irretrievably destroyed thanks to the deliberate negligence of the medical industry and government. My older two children have disappeared and may be dead as far as I know. I’ve been lucky, or tried harder, and have been on top of it since 1985. For me, a variety of vitamins (B vitamins mostly) and herbs did the trick long before I found out about Lyme in early 2016, just a few months ago. In the meantime, I’ve written a book about the experience that should help a lot of people. I’m doubting there is any complete cure. http://foosresearch.com
- November 1, 2016 at 12:12 pm
- January 26, 2017 at 12:52 pm
I think this is a very healthy and well-balanced approach to lyme. I totally agree with all your comments. I had it about 5 years ago and took lots of antibiotics but also loads of herbs (sarsaparilla, garlic, cats claw, loads of green juices and cilantro) and healthy food, exercise and keeping positive, resting as much as possible and really looking after myself, little by little I got much better. My doctor told me I will always have the bacteria in my system but I now lead a very normal life and think people should not always be so negative about this disease.
- May 7, 2017 at 8:24 pm
I must say as a retired Healer , this is the first that comes close to I went through and did to heal myself. You are real, honest and pull no punches as a cure not trying to sell a thing. You are an Inspiration to ones with Lyme. I put it in remission,like You did. As a Professional Healer, I’d like to meet one day. This Post needs to go nationwide, I Thank You, I did much in the same way. Al- known as Justus. I try to help people today, never charged a dime, I’m fine today, like you are . So many ripoffs and so much confusion with Lyme. Be proud of Yourself.
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