"Lyme? At least it isn’t cancer"
Guest blogger Emily Reach White writes that one of the hardest things about Lyme disease is the reaction of other people.
by Emily Reach White
I probably won’t make a lot of friends with this post — but I hope I don’t make any enemies either. I hope that what I’m not saying is as clear as what I am saying.
I’m not saying that late-stage Lyme Disease is worse than Cancer. I’m not trying to make any comparison between the two diseases…as diseases. Both Cancer and Lyme disease are devastating. Both wreck families. Both make victims unable to eat, unable to stay awake, unable to sleep, unable to work. Both involve excessive, invasive treatments that kill healthy cells. I have lost friends and family members to both.
But there are some notable differences — and those differences are all in how other people respond to the illness. How other people perceive the sick person, and the sick person’s family.
If you have Cancer, or another sickness from the established disease Canon. The register of approved diseases. Diabetes or AIDS or Parkinson’s or Multiple Sclerosis or Cancer. If you have Cancer, people will listen.
If you have Cancer, your health insurance will probably cover your treatment, at least partially…whatever you want that treatment to be.
If you have Lyme disease, you will get letters from your health insurance company saying that they can’t cover any of your treatment because the IDSA Guidelines don’t recognize chronic or late-stage Lyme disease.
If you have Cancer, people will establish foundations, and run 5k’s, and pass acts in Congress and wear ribbons and buy bracelets and pink things to raise funds for research — to the tune of billions a year.
If you have Lyme disease, no one will raise funds for research, or even believe that you have a disease. But you’ll look around one Saturday and realize your 5-year-old daughter is missing…and you’ll find her down the street, peddling her artwork and her trinkets door-to-door. To raise money for the family.
If you have Lyme disease, you will go broke…while you’re going for broke.
If you have Cancer, and you’re a kid, the Make-A-Wish Foundation will arrange for you to meet your favorite celebrity or go to Disney World. And Hollywood will make movie, after movie, after movie about your story.
If you have Lyme disease, and you’re a kid, your gym teacher will tell you that you have to run the mile unless you can get a note from your doctor. Your teachers will fail you for missing too many days of school. And people will tell your parents that you’re just going through a phase. That you just want attention.
If your dad or your mom has Cancer, people will organize workshops and therapy groups for you. People will tell you that it’s OK to express your feelings.
If your dad has Lyme disease, people will tell you that he doesn’t love you. Let me repeat that and assure you that I do not exaggerate. If you’re a kid, and your dad has Lyme disease, well-meaning people will tell you that, if your daddy loved you more, he would get better.
If your husband has Cancer, ladies from your church will show up at your door with casseroles.
If your husband has Lyme disease, ladies from your church, people in your own family, will tell you to leave him. Will call you an enabler. And you’ll be too busy helping him crawl from his bed to the couch, or steadying him as he stands so that he can use the bathroom, or helping him finish his work so that your kids can eat to wonder what, exactly, you’re enabling him to do.
If people ask you: “Is your dad sick?” And you say: “He has Cancer.” Their eyes will well up. They’ll squeeze your hand and offer to bring you dinner, put you on their prayer list. They’ll say: “If there’s anything we can do…” And they’ll mean it.
If people ask you: “Is your dad sick?” And you say: “He has chronic Lyme disease.” They will look confused for a moment. They’ll say: “What?” And then they’ll shake their heads, smile, and say:
“Well…at least it isn’t Cancer.”
EMILY REACH WHITE is the co-founder of Paris MTN Scout, a film production company. She is the co-writer and co-director of GET BETTER (2012), which is loosely based on writing from her blog and her dad’s fight with late-stage Lyme disease. Her most recent film, CINEMA PURGATORIO(2014) is a showbiz comedy that follows the trials and tribulations of a married filmmaking team. She lives in Greenville, South Carolina, with her husband and writing partner, Chris White. Her father died in 2007, after many years of late-stage Lyme disease.
- August 5, 2014 at 9:14 am
I am so glad you have addressed this issue. My 15 year old daughter and I have both suffered immensely from multiple infections transmitted by a tick. She was told, “You can’t be sick. You are smiling.” She has been demeaned and made to feel like a pariah in school. We are not the complaining types, so we don’t get the sympathetic help we need. I actually know of a lady in a support group who has had both cancer and Lyme and she, herself, said dealing with Lyme is far worse! People just don’t get it….until they GET it (Lyme). We both spend our efforts in educating people about the ravages of this complex disease and how to prevent it. Thanks!
- August 5, 2014 at 8:21 pm
I am a 49 yr old Firefighter, I have late stage Lyme, I have special braces for my legs now because I can no longer walk without them. I am one of MANY firefighters in the area (OC and LA) that have been diagnosed with Lyme. I have been very very blessed that most of my treatments have been covered under Work Comp. But I am still not getting better. Its been 4 yrs, been off the job now for over a year. I want everyone to know that some jobs are covering Lyme now. (don’t give up!) I have had over a year of antibiotics and still getting assistance from work. I now am angry every time I see a Nike Commercial and hate that I can’t take care of myself. Shame on the people that don’t think Lyme is real, do you know how many times I wished I had CANCER instead??? At least then I would know where I stand. This is not a poor me statement, it’s a lets find the right help statement!!!!
- August 7, 2014 at 10:48 pm
We too have chosen to help spread the word and help educate others on the severity of Lyme and its co-infections by telling my son’s story. He went undiagnosed and misdiagnosed for over 5 years. We saw 15 different neurologists who said they had no idea what he had. Meanwhile these infections slowly took over his body leaving him totally disabled in a wheel chair. We want the help others so they will not have to go down the path we have had to travel. We are hopeful now however, that in seeing a top lyme doc, he will get better. Here are 2 links to TV features done on my son…
- August 5, 2014 at 10:42 am
Thanks for saying it.
- August 5, 2014 at 11:36 am
Well said. All the way through. I have thought much of this myself but you captured it very eloquently.
- August 5, 2014 at 11:44 am
Thank you Emily.
- August 5, 2014 at 2:41 pm
I remember wishing I had cancer just so someone would take notice and doctors would actually care
- August 5, 2014 at 2:58 pm
I can “somehow” relate. I as I have fallen victim to both. My Lyme was not diagnosed until it had spread throughout my entire body, including my brain, even though my “doctors” were aware of my many symptoms, but neglected to do a simple differential diagnosis!
I was diagnosed with breast cancer in 2013 & had a double mastectomy. I have to say if I’d been given a choice between BC & LD, I’d choose BREAST CANCER. Not to limit, repeat, NOT TO LIMIT any BC suffering, but at least it may have been diagnosed sooner. I am in KY where the medical community refuses to become educated about LD. There’s barely any fight left in my body-NOT because of BC but because the devastation the LD has done & continues to do to my mostly lifeless body.
- August 5, 2014 at 3:17 pm
You’re so brave! Thanks for telling it like it is (having had both, had hopefully).
- August 5, 2014 at 3:29 pm
How TRUE (most of the time anyway)!! I find that is beginning to change thanks to people going public about this scourge. I got bit on 04/04/04 and still fight it. Nettle urtication took away the Fibro and arthritis.
- August 5, 2014 at 4:34 pm
Emily, thank you so very much for expressing so eloquently what we all feel and hear all the time. So very sorry about your dad. I am 57 and have late stage now.
I went through all this years ago when i had CFS and was bedridden and on disability. So, to go through it AGAIN is just crazy hard. Crazy hard for a crazy illness. Choices between looking passable/good OR intentionally looking bad just to show those whom are closest to you how sick you are!!! And, then feeling bad ’cause you look like @#$%!!! I have called it diagnostic/disease purgatory.
When i had CFS, I started a support group with another CFSer. After her family totally rejected her and then her MD , she had enough and killed herself andcstated these very reasons in her suicide notes to me and her MD.
The only thing keeping me going is the memory of my lucky and brave dad who survived Auschwitz concentration camp.
So thank you again for your very relevant piece Emily. I am sure it will be read and appreciated by many.
- September 30, 2014 at 5:51 am
I know your story, I also live it with my wife who is also late stage.
- August 5, 2014 at 4:47 pm
I’m with yah, been through it all, going through treatment for the fourth time. Keep getting bit.
- August 5, 2014 at 6:01 pm
Thank you for taking the risks and writing this article. I have had Chronic Lyme disease for over a decade. It has absolutely destroyed the life I had – the life I worked SO HARD to build. It has completely disabled me, broken me, broken my spirit, ruined relationships, taken away my ability to follow my life calling, my carreer, my ability to support myself, my independence, my ability to do things that bring joy to my life… even my ability to do much that is spiritual – if you are in enough pain – you simply CAN’T function in any of these ways – you can’t interact – have relationships and on and on. And I have been told SO many times in so many ways -that if I really wanted to get better I would be better by now – if I just had a better attitude… and I have been refused help more times than I can count because I don’t have cancer. Even though I struggle with the same issues – I can’t keep up with house chores, I can’t prepare healthy foods (or sometimes any foods), I can’t drive or even take a bus. And if I said these exact words to someone they almost always attack me (even in a quiet voice with a smile) about how I am focusing on all the things I can’t do. If I had cancer – people would help me, not judge me. At least most people anyway – some judge no matter what you suffer from. I have been deeply hurt many times because of the disease I have – and I don’t just mean by the people who help those with cancer – I mean by all of the political toxins I have to deal with when I should be able to use everything I have to fight the disease in my body – not the social/political disease of our “health” system.
- August 5, 2014 at 6:07 pm
- August 5, 2014 at 6:49 pm
Unfortunately this is sad but so true. I am a mom of 3, all my kids are positive but we can’t afford to treat everyone so the sickest are being treated first. There are no casseroles, no fundraisers, no extra help and the best treatments are not covered by insurance. I still try to work but then I don’t rest enough to heal. It is a vicious cycle. Some days the pain and the financial stress is too much and I wish I would not wake up. Then I think of my kids and find a will to fight. If I could just be allowed to rest, get proper treatment and be allowed to heal, I could have a life again. But instead I fight to get out of bed everyday. I am not sure how much more fight I have in me.
- August 7, 2014 at 5:26 pm
My heart goes put to you. I know the exhaustion having had both illnesses (cancer and Lyme) and my daughter has tertiary Lyme for 15 yrs. she was bitten at age four. She’s on IV now, but it hasn’t reversed the encephalopathy in her brain. She’s 19 and suffered all her life. There are a myriad of painful symptoms like neuropathy, hair follicle pain on every part of her body and bonecrushing fatigue and insomnia. I can barely handle things myself and she is the only reason I go on. We are on self pay right now and I probably can only afford a few more weeks…the money is all going for her treatment which doesn’t seem to be working…she’s been on orals as well for bartonella and babesia and she has hashimoto’s. It’s frightening.
I wish you peace, strength and solace and will keep you and your family in my prayers. I wish I could give you a vacation so you could heal…it’s terrible what you are going through…they always say take care of the parent on airplanes so they can care for the children…same here. You need help and I hope and pray you get it soon.
- August 5, 2014 at 6:52 pm
Absolutely agree 100%. My B cancer was nothing compared to my daughter’s ordeal with chronic Lyme Disease. Well said.
- August 5, 2014 at 7:07 pm
I have found the same thing to be true, ofcourse. Our 24 years old daughter has been treated for 4 years now but has been sick , very sick for 11 years. While trying to figure out what was wrong with her, we actually said the words, we’d rather it be cancer then Lyme Disease.
Thankfully for us, our church family really did rally around us, we are so, so grateful!!
- August 5, 2014 at 7:50 pm
Touched by Lyme, I would say so. I went from a never tired or sick healthy & happy to help anyone with anything, to 5 desperate years of modern medicine Please fix me, but these last 2 years of hurting somewhere every second, & total, complete exhaustion; and without a job or insurance – You’re doggone right I’d trade this crap for cancer. At least I could keep my selfrespect and die in peace. I’ve always said one should live their life in a way to be remembered and spoke well of, but after my passing, you know folks are only going to talk about how lazy and worthless I am, being judged from the later times in my weakening health.
It’s great to here that Our government is finally starting to look at Lyme as a real disease and maybe fund some research that the next generations can benefit from.
Thanks Emily and April Dawn; You’ve hit the nail on the head.
- August 5, 2014 at 8:39 pm
Emily Reach White, you are absolutely correct in everything you said! It won’t always stay like this though. As diagnostics & treatment guidelines improve, we will see greater recognition of the facts about lyme disease & this will result in more positive responses from others. Presently “others” act indifferently or are hostile towards lyme disease patients because they are misinformed. There is coming a day when lyme disease patients will finally receive the proper diagnosis and treatment their illness requires.
- August 6, 2014 at 12:46 am
- August 6, 2014 at 12:45 am
When I informed my boss that my mystery illness was identified, Lyme disease, she said, “oh good, something curable”. I went on sick leave shortly after. 6 years later I still cannot work. 6 years later I still struggle without my 6 figure income. 6 years later no end in sight. I understand the sentiments well in this article.
However, each time a friend passes from cancer, I am still glad to be alive.
Keep up the hope and strength everyone!
- August 6, 2014 at 12:53 am
What a commentary on ‘appearances’ and ‘accepted illnesses’. Thank you so much. No one really has to explain BrCa, which I’ve gone through with its cutting, poisoning and burning (20 years ago). But Every Time I mention that I’ve been in one phase or another of Lyme D.(+ 3 co-infections) on and off since 1964, even through a pregnancy 50 years ago, I have to take the time to explain how it is, what it is, how to recognize it, what local doctors to go to, what websites (this one), etc., etc. – all of which I’m OK with doing because who else will? Feels all uphill, again and again. Then I’ll see some media mention of it (Drs. shows, ‘news’, a TV drama….) and, yet again, the writers have not done their homework, misrepresenting all sorts of things. Where I live (Northern CA) a whole lot of people have Lyme, either know it or don’t. At least we have some Lyme Literate Doctors here, and they have quite a caseload.
- August 6, 2014 at 2:08 am
That’s why at the L.a. Lymie group meeting the other day? I came up with an Idea? We need a celebrity spokesperson? I have decided Oprah? No one else can reach more people. Considering her global concern for the planet? She is the obvious choice? We have to get to her with the Animals effected by Lyme’s ? This is how we will catch her interest. I dream of a Lyme’s Gala in Santa Barbara, like the Red Ball, collecting millions of dollars like APLA did with Elizabeth Taylor? Why not Manifest this and make it a Reality? Awareness now
- August 6, 2014 at 8:30 am
I actually had a doctor tell me that I would be better off if I had cancer, MS, or Lupus because of the very reasons in the blog. He advised me to tell friends who asked what was wrong that I had a “form of MS or Lupus” because they would be more understanding. He told me that doctors would be quick to label me as a “pill chaser” or a hypochondriac .He was right. He was the only doctor who told me the truth.He also turned me away because my health insurance company refused to pay for treatment if it was classified as Lyme related.
- August 6, 2014 at 5:11 pm
This was an incredibly well wrote article, Thank you! I have been battling Lyme since 98 and I am a single parent trying to raise a 7 yr. old child on disability income. I have had my symptoms somewhat manageable over the past few years but due to an extremely stressful year last year my symptoms returned. My feet were so broke out so bad that I have been walking around barefoot for the past 4 months. Last month I stepped on a scorpion and realized I had to go back on antibiotics and that just makes us sicker until we get better or just quit treatment. Its time Lyme Disease is recognized for what it is and Not what insurance companies and doctors see it! Thanks for your article.
- August 7, 2014 at 9:35 am
Thank you for writing this article! You are saying what I tried to explained to a select group of people real carefully – but quickly had to learn that they did not get it!!! I hope this article will be read by many people and maybe a few realize that lyme is real.
My daughter was not making things up or just looking for excuses when she got sick and we desperately tried to get help. I guess some of our close friends eventually understood what was /is going on and what she had to deal with every day , her not be able to live a regular live style of a College student. Her being forced to leave school and stay home , taking just a few classes here and there , not be able to go out in public due to anxiety attacks ! Thankfully now after over5 years she is in remission – but living a complete different life than a regular young adult – always seeing to get that sleep in and watching the diet ….but yo all know how that is. I just thank the writer again for this great article …MY HEART ALSO OF COURSE GOES AOUT TO ALL MY FRIENDS AND PEOPLE THAT HAVE TO BATTLE CANCER – which is a deveasting decease to say the least.
- August 7, 2014 at 10:51 am
I am not a person who seeks sympathy but I have to say, this is what I am living right now. I am suffering immensely, in a lot of pain and dealing with very heavy issues. My father-in-law has a type of blood cancer, one my mother-in-law has even said his doctor said “If you get cancer, this is the one you want. Treatments work quite well and most patients have an excellent prognosis.” All he does every single day is play the woe is me game. NO ONE is ever suffering just as much or more than him. The mere mention that I don’t feel good sets him off to either proclaim “At least you don’t have cancer!” or tell me I need to stop being lazy and get a job. I am 28 years old and I have lost my entire twenties to this disease, had to shut down any aspirations I had and basically just become a full-time patient. The thing that really upsets me is that our symptoms are not all that different. When he complains of the side effects of chemo, every ear in the room tips in sympathy, when I even remotely disclose how serious the side effects of TBD treatment are, I am met with scoffs of disbelief and eye rolls, even though the side effects we are having are almost exactly the same! I’m just on antibiotics, not chemo! People don’t realize how horrible and dangerous TBD treatment can be. Just as he is literally “killing himself” to get better, so am I! So many are under the estimation that TBDs can’t kill you. I’m living proof they can. I have CLD, Babesiosis and Bartonella and have been treating Babs since 2012. I went off my Mepron last year for a month and become so anemic I needed 2 sets of blood via transfusion. I was told by the doctor that if I hadn’t come in within a few days of the time I did, I probably would have died in my sleep. Instead of comforting me when he came to visit, something he gets even when he’s having stomach upset, something we all get for varied reasons, I get told before he even says hello that “At least it’s nothing serious.” and “Oh, well I get anemia all the time, my levels are always really low and you don’t see me complaining!”, disregarding the fact that there are many types of anemia and that his is caused by chemo and mine was because I was essentially bleeding to death on the inside. He waits weeks before he is given blood and goes to Boston to get this done. Mine was done as an EMERGENCY and had to be done at that exact time! It angers me so much that as I am watching myself weaken and become more and more unable to do things, people like him decide that taunting us is okay, because we don’t have cancer! Well his doctor actually gave him a prognosis, 20-30 years at least, excluding that the man is a glutton and still drinks beer and eats junk food like it’s going out of style. This man has had two, yes two $300,000 stem cell transplants along with like at least a million dollars of treatment total paid for by insurance and is about as grateful for it as if he’d been given an bologna sandwich. He could care less! I have to worry about getting a few thousands dollars paid for and my husband, his own son, is currently getting sicker and sicker with Lyme and can’t get in to see a doctor because his insurance doesn’t cover ANY! All the while he calls us lazy, make fun of us and judges us from his crystal perch. He at least has answers. My doctor, when asked about prognosis, “Will I ever get better?” and “Will I have a normal life span?” were responded to with a “I can’t really answer that for you. We can hope that the treatments make a difference and you can regain some sense of what healthy means to you, but I cannot promise anything. This is a complex game we’re playing and nothing is predictable.”. But he is much worse off than me! As far as I know he’s not ever come close to death during his trial with cancer. However, I have and factor in the urge that overwhelms you sometimes to just give up and lay down your strength, after being broken down and tired of the fight, when he complains, I should just laugh, but unlike him I have compassion and understand how hard being sick is and no matter how horrible of a person he is I still give him respect even when I get none in return. People far to often allow their place as someone with an “accepted” disease to go to their head. Nearly everyone I’ve met with cancer doesn’t do this, but some do and it has nothing to do with cancer, it has to do with that person already being critical and judgmental, too far into themselves to empathize with anyone else. I wish none of us were sick, but at least have some compassion if you happen to be on the better side of the waiting room!
- August 8, 2014 at 6:03 pm
Thanks for a thought provoking post. I have been fairly lucky for a Lymie (20 years or so) as I have been able to work and have a quasi normal life.
For the past 9 years I have the support of my wife, which has helped me a lot. Now she has breast cancer and we are both struggling.
But the whole world seems to be going to h*ll in on a handcart, so I guess these are simply our struggles while everything else collapses.
- August 9, 2014 at 5:41 am
So true, every word. Like a bunch of the other commenters, I too have had to deal with both Lyme and BC. I have been in tx for Late Stage Lyme since 2008, along with both of my kids and my husband who is disabled by it. I was dx’d with BC in Jan. 2014. What a huge and crazy difference between the two experiences. The first time I knew I was heading into much calmer waters was the day I got my BC diagnosis. I was given the names of two surgeons, and was told to make appts with one or both, if I needed a second opinion. I said something about insurance not covering that, and the nurse I was speaking with looked at me like I had two heads. It was incomprehensible to her that insurance would be an issue, but in my Lyme experience, why wouldn’t it be?
I have had no problems getting any of my cancer tx covered. As soon as I hit my out of pocket max- it has been covered 100%. I had gone to an onc for a 2nd opinion- no problem there either.
Yet, my llmd who has wanted me on IV abx for a long time, could not get my ins co. to cover that. I finally tested CDC positive, had a cancer diagnosis, and they did not care at all. I am totally broke by that tx, but cancer- all covered, no questions asked.
I also was sort of active on a BC forum and the people there get angry at the Oct pink-washing. While I see their point of “prettifying” BC, I think that most Lymies would give their left kidney to get anywhere close to that level of awareness. I participated in this years Relay for Life as a Survivor and raised over $300 on my own. I could never be able to do that for Lyme although I tried.
Thank you for writing this article and thank you to all of the commenters sharing their stories.
- August 9, 2014 at 12:09 pm
Thank you so much for sharing this! I am a mother of four so I DO understand the impact that Lyme Disease has on the children, and it breaks my heart. It also impacts the spouse detrimentally, but is saddest, I think, for the kids. I have suffered with Lyme for over a decade, but was not diagnosed until a little over a year ago. I was misdiagnosed time and again after going to countless doctors, and in most instances, their prescription drugs to treat what they “thought” I had only made me get much worse… felt close to death at times. I was also misdiagnosed with fybromyalgia and CFS. Lyme Disease stole away the active lifestyle that I once knew and left me a shell of the person I once was. I not only had to suffer the physical symptoms of pain, weakness, even paralysis at times, along with a host of other symptoms, but I had to suffer the emotional pain of feeling useless as a human being and the emotional pain of the lack of support by family and friends, which I know other Lyme sufferers can relate to. I have also had cancer twice, and would take cancer over Lyme any day. This is NOT to belittle cancer by any means, but Lyme leaves you in a private hell that no one but those living with you have a clue about. And if it is continually missed by doctors and not diagnosed, as is the case most of the time, we are left to suffer for years as we get sicker and sicker and people misjudge and abandon you. When we ARE able to go out in public, we usually try to look our best and smile and pretend we are normal like everyone else, but on the inside, and behind closed doors, we are still suffering and going through our private hell. Hopefully blogs like yours will help folks understand and care and spread the word. Then maybe, just maybe, we will finally see the changes that are needed: Getting the treatment that we need… Insurance covering at least part of our treatment… The mainstream doctors and medical community being more knowledgeable about Lyme and accurately testing for Lyme (and treating)… AND getting the support we need from our friends, family, communities and medical establishment… so those of us with Lyme can get our lives back… And our families can get their loved ones back. This is my heartfelt prayer for all of us.
- August 13, 2014 at 1:35 pm
What a great article Emily. You are so right. It is a devastating chronic illness that affects the entire body, brain, heart, liver, joints, muscles, eyes, and all of the above.
Children face the dilemma also because Lyme waxes and wanes and you can look perfectly normal while it is ravaging your body. Looking normal does not mean you feel normal … in fact, you feel like death warmed over. One minute you feel OK and that night you feel dreadful. One minute you can make plans and the next you have to cancel. You cannot find your way home, loose taste and smells and hear voices in the next room and people think you are going crazy. Yes, crazy with infection in the brain. You go to see 15 different doctors and they say it is all in your head. You must be depressed or LAZY!!!! Bless you Emily, I know what you are going through. I will pray for you and your Dad.
- August 15, 2014 at 8:57 pm
Thanks for sharing your thoughts… our family completely understands.
Compassion and insurance coverage are two things most Lyme folks never experience. To be withering and ill 24/7 is bad enough without being neglected and abused, which is the often the case for Lymies.
- August 17, 2014 at 4:58 pm
I totally agree. I was 39 when I got my first tick bite. Didn’t know anything about ticks and never saw it, but had a lot of the symptoms. In 2001 I was finally diagnosed by looking for an LLMD who would listen, as I had a 2nd tick bite that I had to dig out of my leg small as a pencil point. (I have never had a bullseye rash). I am 62 now and have had a good LLMD since 2001, but I keep going from doc to doc for primary care because there is a “gray line” I am told about Lyme disease. Sometimes I wish it were cancer so I would know there was an end to this pain and suffering. I used to walk 15 miles a week with my dog and now I have hardly any balance and cannot get off my knees because they are so weak. My new doc wants to know why???? After x-rays were negative, which I found out by calling the doctor’s office myself. I also had a MRI of my lumbar spine, which has shown bulging discs, but he never told me. I called his office and told the secretary that I was going to my LLMD and needed all my results. I am sorry but primary care doctors suck big time. I have beat the headaches and stiff and painful neck pain, and insomnia, but I find it difficult to walk and my LLMD just sent me to Quest Labs, which showed I still have Lyme after all this time. The depression and anxiety can be so debilitating, but I have a great psychiatric nurse practitioner who helps me with SSRI’s and Xanax. I feel I have lost half my life. My children are now in their 30’s and it started when they were in high school. I am back on clarithromycin because it is summer and feel a little better. I get more sympathy from my dentist and dermatologist than my primary care. In fact I have only seen him twice and they are 10 minute visits. I don’t mind telling you that I live in Newburyport MA an hour from Boston where I saw numerous “Lyme” doctors, but only found one at Boston Medical Center. He is pretty much retired now on the Cape, but I do go down to see him and fax him. He is still good about lab testing and giving me antibiotics. I still have Herxing with certain antibiotics after all this time. Sorry this is so long, but you can bet if I had cancer doctors would have plenty of sympathy.
- October 16, 2014 at 7:54 pm
“the depression and anxiety can be so debilitating”
A lot of time that the hardest part for me and I have been holding out to visit a psychiatrist. I have tried Xanax before and I know it would help me relax and be positive so I can actually visit with friends and family. But something about visiting a psychiatrist is admitting that I have a mental problem when I know very well its the lyme thats causing such sever psychological problems.
- August 21, 2014 at 8:04 am
I have thought this exact same thing for a few years now..nobody cares and you are dismissed as a “hypochondriac” or with mental problems..I have been fighting this for nearly 10 years now and finally got a diagnoses from a very highly respected LLMD in Missouri earlier this year…I have hope I am going to beat this and regain some semblence of a normal life againand when I do I hope to help others escape from this living hell.
- August 26, 2014 at 7:04 am
I heard about children, who had cancer, leucaemia. Many doctors treated and the most of this children died under cancer treatment. But one little girl would be treated on Neuroborreliosis and got health. Sorry about my funny English, but this story was absent in this issue. You could read it in the new book “Borreliose-Jahrbuch 2015”, published in Germany at december 2014. ISBN 978-3-7357-7753-9
- August 25, 2014 at 4:57 pm
I had breast cancer 2 years ago while my son was suffering with chronic Lyme’s. I am better. He is not. My medical bills were mostly covered by our insurance. His about 30 percent covered. I went through chemo and am back doing the things I want to do. He went through chemo with antibiotics and dozens of supplements and treatments, he is up and down and his joints, especially his knees, continue to ache, although he tries to run and bike and do “normal” things. I am 53. He is 17.
- September 4, 2014 at 7:23 am
First off, I would like to send my heart out to all of you. I know what it is like to fight a debilitating disease, because I have survived many of them, the worst being cancer. I love the positivity I hear and I am sorry for the frustration that I hear in this thread. But I have to say one thing – as a survivor and after that a caregiver to people who have cancer, this is not a disease you wish you had. What ever the causes may be, and I am not close minded to your line of thinking by the way, but cancer is horrible. It hurts my heart to see people wish they had the disease that nearly took me out and took away so many people I love. I am not minimizing what you have all had to go through yourselves and with your loved ones, I am only saying that, a debilitating disease is a debilitating disease. We can’t say that one is worse than the other if we haven’t walked in the other’s shoes. I have a dear friend with lyme disease, and that is why I am on this thread. I have chosen to educate myself about it because of him. He works hard every day to combat it. And he is doing what he needs to do to get better. There is hope. I am not trying to say I had it worse than any of you, because it appears you have all worked much harder than I did but there have been others in my life who fought harder than anyone I have ever seen. The important thing is, no matter what, to raise awareness just as you are doing here. To go after things to raise money, to build foundations, and to educate the world. But we must do so carefully in order to gain the support of as many as we can. God bless you all and I will pray for each of you by name today.
- September 8, 2014 at 12:52 pm
You said exactly what I’ve been thinking. Someone told me about how sad they were to watch a video that showed a happy, healthy, vibrant 10 year old who then got cancer. She had trouble speaking, lost her friends, had trouble walking and standing. All I could think is this is my daughter, but she has LYME.
- September 13, 2014 at 12:15 pm
Thanks SO much for posting this article!
I was diagnosed with late stage chronic LYME disease in 2009 after being misdiagnosed with severe pelvic pain and a host of other symptoms since 2003 or 6 years. Of course, by this time LYME disease had already made such a devastating, significant impact on my body that even the most aggressive treatments could not even put a dent into the symptoms, unfortunately. Your article about your Dad’s battle with late stage Lyme resonates with my heart and I can say that you are totally ‘spot on’ with your observations. I find my symptoms are definitely aggravated by stress, lack of sleep, not enough exercise. However, I have many days which, for reasons no one but God knows, that should be not so severe, yet somehow, are as such that I find myself too weak physically and confined to extended bed-rest which can last as long as 12-14 hours at a stretch. Trying to juggle life with these scheduling challenges, coupled with the fact that if I am bed-ridden during the day, getting up at 9 pm or 12 pm, puts me working all night which takes me out of the loop of daytime activities, etc. It’s rough and I pray a lot for God’s grace to give me strength and can tell a noticeable difference, many times, after an extended time or prayer and meditation on the Bible’s promises from God. Thank you once again for posting your Dad’s story. It really touched my heart!
- September 25, 2014 at 2:23 pm
Thank you for writing this!! One of the most hurtful things about my Lyme fight has been when my best friend said, “At least it’s not cancer. You act like this is a priority 10 but it should be a 2. It’s not life and death.” Uh-hum. So, if the PICC line hanging out of my arm that delivers rocephin six times a week that makes me feel ill is a “2”–and I’m “overreacting” and “too self-conscious” to believe an IV hanging out of my arm will hinder my job search, then why is the same thing so dire when it’s treating cancer?!?! This has driven a serious wedge in our friendship, and in spite of knowing about my struggle for the past few years, she still cannot understand why that kind of comment offends me. I’m so sorry that you and the rest of the commenters are dealing with this, and I appreciate the chance to see that my perspective is shared by others in the same situation.
- September 30, 2014 at 6:11 am
Truer words were never spoken. Sadly, Lyme is more prevalent than breast cancer, and will probably overtake all cancers within the next 10 years or so. I’m afraid that people who ridiculed me will become sick of what they didn’t even believe existed. You are brave for speaking out. My own family makes so much fun that I am afraid to, and I am an educated, independent, normally outspoken woman.
- November 13, 2014 at 8:09 pm
Emily, You had me balling my eyes out when I read this. You know how many times I wish I had cancer (actually, I still have not been tested for cancer). I got Lyme when I was bitten by a tick at 7 years old. I am now 41 years old. I just got diagnosed with Acute and Chronic Lyme about 7 months ago (I kept telling the doctors I had it, but no one would believe me). They finally confirmed with a Western Blot done at IGeneX. Since then I have also been diagnosed with the Parasite Strongyloides, Tularemia, Borrelia hermsii, Salmonella, Rocky Mountain Spotted Fever and Brucella. I have blood tests sitting at my house right now (more parasite testing my doctor wants done) to be done, but I can not pay the lab to get them done right now. I lost my job of over 5 years from being sick. I have been fighting like crazy to get Disability, and basically I am being told that I am not that sick. I even recently went to an Infectious Disease doctor (and he is well respected where I live) and he told me that if I was sick as I am telling him, I would either be dead or in a hospital. He also told me that he really did not believe in Lyme (even though my blood tests came back positive for it—so positive that I had to be reported to CDC). You have really hit the head on the nail. Cancer is so much more recognized than Lyme Disease. I know SEVERAL people that have had cancer (breast cancer) that are ok. They had surgery, had insurance to pay for the surgery. My insurance will not pay for my Lyme treatment. I am fatigued every day beyond belief. At times I am in so much pain I just cry all day long. If I had cancer, I would be able to get more pain meds. But, I have JUST Lyme Disease. I am so anemic I have had to have Iron infusions. One time my Iron was so low, my doctor told me I could have died without the infusion. My immune system is very low. My doctor told me that the Lyme was winning and attacking my Killer Cells. Not only do I suffer, but my husband and kids suffer. My husband has to do pretty much everything. And I will tell you I am a VERY STRONG person. But, at times I almost give up. Before Lyme (or at least before it got bad enough) I graduated high school with a full scholarship (I also worked while I was in college). I graduated in the top ten percent of my class. I was going to college. By the time I was 21-22 I was going to college and I had a VERY GOOD paying full time job (I was making almost triple what the minimum wage was at that time). So, I was not a lazy person by any means. Lyme is the most devastating disease someone can have. It can take your life and your sanity away from you.
- November 22, 2014 at 9:37 am
Thanks Emily. People are so ignorant as to the implications of Lyme and the fact that it is such a serious illness which is severely neglected. Blessings x
- December 3, 2014 at 1:32 am
I spent 7 hours tonight with a family who just lost their Mom and wife to cancer yesterday. One of the sons is severely disabled by Lyme and has lost almost everything.
Never once did he say he would rather have cancer. He just watched his mom die a painful death and go through chemo and radiation without a break for two years.
Cancer kills. It also involves months to years of excruciating suffering. I’m watching two friends, both young moms, fight breast cancer right now. Both already had debilitating chronic illnesses. Neither one of them was happy to get Cancer.
There should never ever be a comparison. Cancer is terrifying. It steals parents from young children. Lyme is awful, but at least we are alive. There is always something to be grateful for.
- December 3, 2014 at 1:34 am
Oh … And of all my friends with Cancer; they have insurmountable medical bills and associated expenses and no one is raising a bunch of money, getting casseroles all the time, or having fundraisers thrown in their honor. Despite insurance one friend has $10,000 in medical bills and rising. There are GoFundMe fundraisers everywhere now and people are tired of them and are not giving. There is ZERO glory in having cancer.
- May 29, 2015 at 4:11 pm
Ive had both and I’m convinced they are connected. I believe my chronic Lyme and co/opportunistic -infections set up the perfect conditions for my breast cancer i.e. chronic inflammation and immune suppression. With breast cancer I felt absolutely fine and was treated like a queen, with lyme my very sick daughters and I are lepers/ hypochondriacs or worse, have Munchaushen’s/by proxy!! Ignorant doctors and uninformed public – we need to help them understand the devastating impact of Lyme and cos. before they too succumb. Its a global epidemic and no one is 100% safe.
- June 29, 2015 at 8:54 pm
What Truth IS IN YOUR STORY !!! You said it all !!! THANK YOU !!!!!
- June 29, 2015 at 9:09 pm
I’ve had both. Only about 4 years after the lyme went dormant I ended up with a cancerous tumor in my breast while still in my 20s. I can talk about the cancer with other people, but I never talk about Lyme. People didn’t understand Lyme and pretty much brushed it off. It’s kind of nice to be taken seriously now.
- June 30, 2015 at 9:21 am
just can’t beleave how many people do not know that this is bad Lyme is bad people.If you think that you can put coments on here with out knowing or realalize what it does!I dont wish this on any one ,but,wake up people !The people that have it and know about ,they are telling you the truith and for a reason .To help people understand .Check your kids ,your animals etc It is bad and liaten to these people !Please!
- June 30, 2015 at 9:17 pm
EXCELLENT! I totally relate. I post everything I can find about Lymes disease, and don’t feel well enough to get up and go outside on most days. I believe 97% of my friends and family do not believe me or take me seriously. It is just breaking my heart. It gets very lonely fighting this alone.
- July 1, 2015 at 5:22 am
Thank you for writing this article my daughter has chronic Lyme disease your article is spot on
- July 19, 2015 at 6:26 pm
THANK YOU SO MUCH for FINALLY bringing this up. I am 13 years old when every time I tell ANYONE that i have Lyme they act like its nothing meanwhile I am at home doing IVS and going through so much. It bothers me so much. I needed to read this.
- September 1, 2015 at 12:57 pm
I can’t thank you enough for addressing this issue. Every bit of it is true. If I had more strength today, I’d go on with my own stories and just how very real this is. Thanks for putting this out there. Only people in the immediate family seem to have any idea…
- November 15, 2015 at 9:38 pm
I am/was one of those uneducated judgmental people who has said/thought the exact thing you talk about. “At least it isn’t cancer” or made jokes about it or about someone having it, calling them lazy (in my head not out loud). I have an uncle who got it and I made remarks to my mother about how he’s just getting old and wants to stay home and play games on facebook. Also I jumped on the band wagon making jokes about Avril when she got it. Saying pretty little rock star just wants a break from rock-staring. Well now I have it, I have had it (misdiagnosed) for 5 years. I was diagnosed with possibly having a form of Cancer also hyperactive bone marrow, COPD, pollycithemia a few others like fibromyalgia and the last but not least MS. I had specialist scratching their heads because I did not have all of the typical symptoms, I did have some but they match so many other illnesses it was hard to put it all together. It wasn’t until I traced back and wrote out the entire list of symptoms that occurred over the 5 full years that it was clear to me and I ordered the IGenex tests. I was exhausted all the time, could not sleep could not stay awake, coughing up blood as well as many other nasty symptoms. Many not listed. I did not have the target rash. I was an avid outdoors man, worked out prior to getting it etc. But now after being on this side of things I really see it. I feel so bad for my response to how this disease is treated by others and even how the medical community see it. I got to the point that I had a hard time talking and forming sentences could not remember anything (short term and long) forgot names of friends and coworkers. And finally could not walk and would drop cups or glasses. I play guitar and could no longer do that. It turned my life upside down. Unable to work, play with my kids. It’s a very horrible thing to go through. I would like to take this moment to say sorry to anyone who has this insidious disease. Not enough effort is being make, at least in Manitoba Canada and I would like to start or help do something about it. I’d also like to say a big sorry to my uncle and Avril. Sorry guys.
- January 20, 2016 at 12:25 pm
What a great article! Thanks!
- February 23, 2016 at 12:47 am
My husband had Lyme for 30 years, maybe since he was little. We went through hell for all that time, and finally found a treatment that got rid of it. We had to go to Germany. They got rid of it in two weeks. If we had not found this place he would have died. It is called Infusio. They are in Frankfurt, Germany. They now have an office in Beverly Hills (Infusio of Beverly Hills). The treatments are alternative and easy on the system. We would not have spent the money unless we had known so many people, personally, who went there and followed their progress, and they did every well after the treatment. Lyme though can destroy bodily parts so they give patients stem cells to help rebuild the body. Lyme is an awful, horrible thing!!! It wrecks People’s live from all angles, and many of the treatments don’t work so well or take forever. Well, hope someone’s life is made better by this post.
- June 30, 2016 at 9:30 am
I totally sympathise with you and know exactly where your coming from … I have had this for 3 years…and I AM a Doctor…….. and even my specialists says that it is NOT recognised and so many people are walking around with symptoms that doctors cant understand because THEY NEVER think to ask the question about bites…. mine was in Mexico….. it attacked my central nervous system… killed of brain cells… left me with migraine and erratic heartbeat etc etc… on permanent medication and when I have RELAPSE ..(.believe me folks…. the weeks antibiotics they give you DOES NOT get rid of it…)… its awfull dizzy and sick and flu like and feeling un balanced and drunk and headaches etc etc….. SO MANY people are walking around with symptoms and are told its… M.S or M.E or C.F S …… push to get the test done… even that does not always show up a positive mine came back negative twice….. but I pushed and pushed and got my blood sent off to a specialist in tropical disease…. ITS the most awfull thin got get… I have friends in wheelchairs from it….. repellent does not stop all tick bites….my heart goes out to anyone who has it… I FOR ONE…. UNDERSTAND…WHAT YOUR SAYING …Christine Norgate
- July 22, 2016 at 10:53 pm
A well written article. Thank you for sharing your insight.
- August 7, 2016 at 7:40 am
May is use this as another example for stubborn family members. 4 people I know we ALL have the problem of our families denying, blaming or just ignoring us. I myself have brain damafpge from it and still try fighting. I told to leave husband because my parents found nursing home. Or yesterday was why can’t your Lyme Friends get the awareness Like Cancer patients. I hung up and had a huge Tourretts episode and blackout. So will you join in with us? Please get in touch on FB I started Complex Lyme Awareness. I’m Karen Reed💚💚💚
- September 7, 2016 at 11:20 pm
Wonderful and sad commentary here. I have often thought the same thing. I have had Lyme Disease for many years and watched a number of my children struggle with the same when young. Why one person struggles to get well and the other doesn’t is a maze of “bite site, genes, immune system capability and age, etc”. Our society likes a black and white diagnosis, likes things that can be categorized and numbered. Lyme is not one of those diseases…I could go on. I just wanted you to know you are right on with your observations; Lyme can dumb down one’s entire existence. Be aware of the dangers and damage Lyme can do, is doing everyday–and the horrific damage an unaware physician can do when he or she says “I don’t BELIEVE in Lyme”……xoxox Mary
- October 3, 2016 at 8:13 am
Amazing post! Finally someone had the minerals to say it!
- October 25, 2017 at 11:37 pm
Patients with Lyme disease: most therapies just focus on the symptoms and fight the spirochetes without involving the order of the system of your body.
None of you had been screened for disturbing foci, mercury-sensitivity, aluminum-sensitivity, a dental focus or may be a disturbing scar (tonsil), which influences the order of your system and the capability of the body to respond to therapy. This means, that you will have a different outcome, because the information, (energy,medications) , they are giving you, might not get there where it is needed.
The order of the system of a mercury-sensitive person (ApoE4), what most chronic Lyme patients are, is disturbed by chronic, daily exposure with traces of mercury by ingestion, inhalation and skin penetration. The infection with Borrelia can not be correctly counteracted and fought by the disturbed immune system, and the burden of the Borrelia infection and the unknowing new daily exposure of mercury weakens the body even further.
Medicine wants to add information antibiotics, supplements etc., find pathological, biochemical changes of the disorder , but the information is not carried to the place where it is needed, because the body is in a dysautonomic state, is out of order, and even more highly weakened by those invaders (they even have electron microscopic pictures of). It is like: You want to put tiles on a wall (treat Lyme) and someone is using a sledgehammer (mercury exposure) next door. It makes no sense in adding more and stronger glue (antibiotics, supplements); you have to stop the vibration of the sledgehammer first to be able to work in a field, which then is not disturbed.
The flair ups of the disease can only be explained by the incidence and level of new mercury exposure, because the level of borrelia is not changed from one hour to the next, like the symptoms change. All patients feel better with chelation, as long as the chelator doesn’t contain traces of mercury, and if the exposure is stopped or drastically reduced. For possible sources of mercury read my notes.
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