A life on pause: when Lyme steals everything
From guest blogger Jenny Buttaccio:
It’s nighttime. Lying in bed wide-eyed and frustrated as the clock ticks, you pray for just a few hours of precious sleep. Insomnia plagues you. Your usual sleep medications have no effect on you tonight. It’s as if you just swallowed some candy instead of a sleeping pill. Tears stream down your cheeks. You bury your face into your pillow and weep softly so as not to wake anyone else. Is this really happening again? As the night bleeds into yet another day, time becomes irrelevant as there is never any period of rest. The sleep deprivation is a cruel form of torture for you with no end in sight any time soon.
If you could nap during the day, the constant sleeplessness might be easier to tolerate. Lyme disease wiped out your ability to nap years ago and no one has any solutions for you. Some people want riches or fame, but you, you just want a brain that functions normally. To have a brain that sleeps, isn’t foggy, jumbled or forgetful, is your greatest wish.
A streak of bright, orange light bursts through the curtains. Damn it! It’s morning now. Utterly depleted, you continue with your idle rest in bed as you wait for the alarm to go off alerting you to take your medications.
Almost every medication prescribed to you requires you to take it on an empty stomach. These are instructions you find particularly challenging to follow. Sometimes, you wait more than two hours before eating breakfast just to squeeze in your morning handful of pills.
Invariably, some medication or supplement gets missed. You panic as you rework your entire medication schedule for the day. There is no room for error anywhere. Hopefully, tomorrow you will get back on track. Treatment for chronic or late-stage Lyme disease is regimented and intense. You persist through these demanding protocols in the hopes of having a normal life again.
With the multitude of symptoms you experience daily, you’ve become too ill to work. Career advancement is not a realistic option for you anymore. No landing your dream job. No starting your own business. The longer you struggle with Lyme disease, the further away the reality seems that you will ever go back to what you once were.
Lyme disease can be disabling although some medical and political establishments will tell you it’s not even real. Oh, how you would love if this disease were fake, a figment conjured up by your wild imagination. That somehow seems treatable and much less expensive.
But it’s not an elaborate fabrication or something you’ve concocted for attention. You’re not lazy, unmotivated or a head case. You are not choosing sickness so you can lie in bed all day. This illness is real and it comes with a hefty price tag.
If you have Lyme disease, you will spend all of your money – every last cent – trying to get well. You will invest tens-of-thousands, if not, hundreds-of-thousands, of dollars on trying to save your life. If you’ve had this illness long enough, you’ve maxed out your credit cards, probably drained your savings, pensions, IRAs or 401k’s. Evidence of a life before Lyme quickly vanishes.
Physicians most literate in treating Lyme disease are not covered by your insurance. To get well, you will likely need a multifaceted approach to treatment, including regular testing, prescription medications, supplements, and herbal medications. The effort to repair the damage that chronic Lyme disease has caused is costly, burdensome and at an enormous out-of-pocket expense to you and your family.
Yet, you continually find the strength to persevere. You hold on to hope with fists clenched so tight your knuckles change color. Your hope is in a better quality of life. Your hope is in a future filled with joy and less suffering.
During your battle with Lyme disease, you have not been able to attend weddings, baby showers, family holidays, or outings with friends. You have had to say “no” more than you say “yes.” By now, you feel the pain of isolation. You wish people understood your illness better or, at the very least, that you had some special superpower that allowed you to articulate the torment raging on inside your body.
You will continue to battle this illness with everything you’ve got, but there’s very little energy left (if any) beyond dragging yourself through each day. You need continued help and support no matter how long this journey takes, but you find most relationships cannot endure this level of hardship over the long haul. Your heart badly hurts as you sense relationships beginning to slip away.
Sadly, most aspects of your life are on hold indefinitely due to this illness. Recovery is long. Thoughts about dating, getting married or planning for a family fall to the wayside. You feel this illness stealing some of life’s most precious opportunities from you as you wait for the moment when you might one day be well again. The future seems so uncertain.
Like so many other chronic Lyme patients, you constantly feel the slow, suffocating effects of a life on pause.
Photo courtesy of lymeroad.com.
- May 22, 2015 at 2:24 pm
Oh, you just wrote my story – except the ending is better. It took me four years of treatment but I got my life back. If you are still fighting…keep going. I finished treatment over 3 years ago now…walked 1,000 miles that following year and 2,000 the next. Then finished my master’s degree just a few months ago.
I hope this is encouraging to you and to others to never, ever give up.
- May 22, 2015 at 4:23 pm
Treatments you found effective? I’ve been fighting it six years…
- May 22, 2015 at 9:31 pm
Iʻm with you, Alex–have tried SO MANY things and have still barely reached subsisting, with more suffering than not.
- May 24, 2015 at 11:38 pm
Will try my best to give you the short and abbreviated version. Couldn’t get better until co-infections, Babesiosis and Ehrlichiosis were identified. Extremely expensive, but worth testing for them. Began a major treatment plan after a relapse of what was thought to be in my head and “no such a thing as chronic Lyme”. Eventually a Lyme literate expert got me on track. This included a PICC line for 8 months with 2 different prescriptions 2x/day, as well as several oral antibiotics and supplements. Diet and nutrition were a big part of the healing. Pain was off the chart. Massage therapy, meditation, pilates/yoga and other pain reducing strategies were beneficial. However, I also found out I had melanoma during all of this!!! My body and mind were fighting so hard to recover fully…But I did recover! I used to be an elementary education teacher and was able to go back to my job. I eventually followed my dreams and went after that “dream job”! I am currently an assistant professor in teaching literacy methods courses. Hard to believe I came so far and am so fortunate.
- May 25, 2015 at 9:59 am
Well cassie i was a special ed elementary teacher fell got sick with lyne out of work a mess have a masters but would love to hear more how you landed your job into college because i still have a dream of getting well and transitionibg since i was hurt so badly at work
- May 25, 2015 at 1:28 pm
Send pm Lauren.
- May 24, 2015 at 9:43 pm
Same here. Unemployed since 2009. Just turned 30. Got sick towards the end of college. What a cruel joke, especially for those of us younger patients who have barely had a chAnce to really get our lives going after college.
- March 23, 2017 at 9:00 am
I so hear you! I was 17 years old when I got sick. My senior year of highschool was a nightmare. I was so sick and horrible panic, anxiety, couldn’t swallow food, air hunger so bad at night I was terrified to fall asleep because I thought I would stop breathing and die. My doctor thought I had leukemia at first due to WBC. My friends all went off to college which had been my dream and I had to stay home (with a CFS diagnosis back then in 1998). 12 years later finally properly diagnosed by Dr. Steven Harris in CA. Remission for 4 years in the past 20. Am almost 40 years old now and cannot believe this is my life.
- May 24, 2015 at 9:46 pm
@Erika… would you mind sharing with us your top 3 treatments which h you found to be game-changers for you? Please?
- May 22, 2015 at 4:21 pm
Yeah, that pretty much nailed it…ugh
- May 22, 2015 at 9:37 pm
Why isnʻt there a way to email this to someone? I have a friend with MS (supposedly) and Lyme who would benefit from it, since she is close to giving up and needs info sources.
- May 24, 2015 at 11:14 am
I wish this is what my colleagues at work and friends and neighbors could know without shoving it down their throats.
“oh, you look better” was never meant to hurt but it does
Suddenly dropping off the social calendar and losing all those spontaneous things you used to do
The abject terror that, I too, will be bankrupted and no better off 1 year, 2 years three years from now, and no better.
Those who read these articles blogs and comments already know this
- May 24, 2015 at 6:28 pm
I had CFS, diagnosed with Lyme disease, antibiotics for 18+ months, other meds – you know the deal. I’m fairly stable, but still quite ill. Hopefully some new drug will pop on the market (I’ve seen 2 in early development) and will clear everything up for good. Keep smiling everybody if only on the inside, and I wish you all the very best.
- May 24, 2015 at 11:16 pm
I sobbed when reading this as it was like you were telling my story. I have grieved as you have grieved. I have held on with clenched fists. I have spent thousands of dollars trying to regain my health. I have cried the silent and not so silent tears. And, I know all too well of the extreme sleep deprivation you describe.
People have said to me~ you’re so strong. Even to this day that word bothers me. I have a tremendous will to live but I can honestly say that at one point I was ok to let go. Thank you for your post.
- May 25, 2015 at 8:48 am
You got it exactly – every day is a myriad of dehabilitating symptoms that you cannot predict….and once in awhile I will have a “good” day, which is all the more bittersweet as it emphasizes what I am missing. No one really understands that if I make plans on a Friday night, I am cashed out for the rest of the weekend…. I used to ski a lot, but now just the drive to the mountains exhausts me and I have nothing left for the hill. My family, I have to believe, truly doesn’t understand as I “look fine.” I am incredibly blessed to have a very loving and caring husband, who sees my fatigue just by looking in my eyes, and orders me to rest; it is painful to watch him tirelessly do the household chores that I should be doing, and there is no assuaging the daily guilt.
I was misdiagnosed for 30years, which now explains my miscarriages, and worst of all, that my little boy has Lyme also – and my OB-GYN didn’t even know that Lyme passed in utero.
Lyme has devastated my entire family, and is so misunderstood by those who don’t have it, and myriads of doctors keep looking the other way. The #1 reason people die from this disease is that they take their own lives – this has got to stop, and the medical community has to wake up.
- May 25, 2015 at 1:26 pm
I totally get that! Also, you made a great point about how many people take their own lives because it is so awful to live in the nighrmare. No one really understands it (unless they have had it). It hurts when people don’t believe you can be that sick. Especially when you look okay and are having a good day up and about. Hang in there and keep fighting. So sorry for your losses. Devastating for sure.
- May 27, 2015 at 12:15 am
By Marcie Nichols — May 4, 2015 5:26pm
With him there are no boundries, nothing is left sacred.
Physical torment, mental torment, life steeling torment, he touches it all.
Leave no stone unturned he says,
As he steels my energy, my life, leaving behind the pain.
Sitting in the sunshine and hearing the birds, I am trying to recover some of what he stole.
But I am stuck here, on this bench.
Getting to this bench was hard enough and that alone brings the tears.
My flowers need me, the yards need caudled and tended to and I long to have my fingers in the dirt.
Not today, not yesterday, nor the day before.
He stole my smile, stole my brain, eeking out every drip of energy…
the Thief took my strength, with no apology, no remorse.
- May 27, 2015 at 12:01 pm
Thanks for sharing, you nailed it…. lonely lives stuck in an unbelievable quagmire of disease and misery and mystery and lack of knowledge and misunderstanding and rejection and dispassion and incompetence and mistrust. Too many losses – more than ever aware many have deeper pain and trials daily too. Sinking feelings, languishing, scraping for anything to help, desperately trying everything we can to hang on, to hope. Waiting…. wishing everyday, every minute, we could just hit that pause button and get on with our precious life! Yet hope is everywhere if we’re willing to stretch to that positive level. Look and see. Mine is spiritual – supported in grandchildren’s eyes and smiles and sweet voices, a silly little black curly haired puppy scampering around, vibrant colors erupting amid greening grass, fragrant warm breezes, beautiful sunrises on the beach, awesome starry filled nights…….. all validating the promise of a perfect future not far off!
- May 28, 2015 at 10:21 am
I’ve experienced all this for over 30 years. It’s a serious struggle. About 8 months ago I began Bee Venom Therapy. It’s working very, very well.
This is a group dedicated to discussions on Bee Venom Therapy or Apitherapy. Many use it to treat Lyme Disease & it’s Co-infections. https://www.facebook.com/groups/1492038901037893/
Love & Venom, Don Downs!! Love his work.
Bee Venom Therapy or BVT has been used for 6,000 years to treat many conditions. It’s well documented and there are many first hand accounts to be found.
BVT has many, many benefits. For a Lyme patient it offers this: kills parasites, bacteria, & viruses. This is near 1,200 infectious agents.
Here is one cool kicker, BVT pokes holes in BioFilms! A membrane-busting protein called phospholipase A. Yep, way cool. These holes are gateways for antibiotics, herbs or your own immune system to access the bugs. Happy dance for that bonus.
Additionally, pain relief & hormone balancing are certainly part of the benefits. The venom kills bugs while calming damaged nerves as well.
First bee stings trigger the production of histamine, a chemical that drives allergic reactions. But as the patient is further stung, a class of T-cell that would normally boost the immune response against the venom instead senses the histamine and morphs into regulatory T-cells, calming the immune response.
Bee Venom School for Lymies!
- June 3, 2015 at 5:35 am
I don’t have Lyme Disease, but I can’t even imagine the pain and suffer you guys must go through.
I wanted to share a story of someone I was introduced to that have Lyme. She was referred to me since I have a biophotonic scanner that can measure your immune system by measuring the molecules of the carotenoids, our largest family of antioxidants. WHen I met her, she was very weak, walked slow, was in lots of pain due to the co-infections, and could barely make it from the car to the coffee shop we met at.
I scanned her and she surprisingly scored fairly well which she told me she followed a strict vegetarian diet. And my scanner confirmed and reflected that! But here is what many healthcare professionals don’t know. You have to saturated, or max out, your body’s potential to absorb antioxidants to be able to totally remove all of your infections. And the best part, you don’t need antibiotics and strong prescription drugs to do so. All you need is a plant protein diet and even more important, supplements that works. You will be surprised how many doctors we scan that has no, or very little knowledge of the antioxidant/ free radical relationship. (and they usually scan poorly too)
We are so overwhelmed by TV ads promoting the convenient one-a-day supplements and “gummi bear” supplements which is pretty much a marketing fraud. There are a few factors that is important to know:
-Supplements have to be taken twice a day….no exceptions! This is important since vitamin C and the B Complexes are water soluble and are only available on a cellular level for 8-10 hours before our body flushes them out. Then we are unprotected until out next dose. The enemy, free radicals, never take a day off and will attack your system continuously and try to “overtake” an antioxidant cell and convert it to a free radical.
– Never take supplements on an empty stomach….no exceptions! When us humans are fasting, like when we wake up in the morning before breakfast (breaking the fast…see why the name!), our empty stomach will adjust the acids in our belly about every 15 minutes or so by flushing out the belly juices. You can’t feel this flush, but it is a natural reaction so we don’t end up with continuous acid reflux…kind of nice! If you take your supplements on an empty stomach, your supplements could be flushed straight through your belly and digestive system before the nutrients are properly absorbed. When you eat, or break the fast, your belly sends signals to your brain to stop the flushing for several hours so the food in your belly can be absorbed. Another neat function our body does for us. This is why you need to take supplements during, or just following a meal, so they stay in your belly as long as possible so the nutrients can be properly absorbed and can enter the bloodstream and reach the cells.
– And thirdly, you have to take pharmaceutical graded supplements that works….no exceptions! Only very few companies offer this, and never, ever buy supplements over the counter…..never. And never trust a single vitamin like only taking Vitamin C or D or B complexes etc. You have to make sure your supplements cover the antioxidant network, Vitamin C, Vitamin E, Glutathione, Alpha Lipoic Acid, CoQ10, and Selenium. But don’t buy them individually, they have to be taken in a certain synergy to be able to increase your antioxidant levels. Also, pharmaceutical graded supplements will guarantee that every single capsule has the same amount of active ingredients and there are now “fillers”. You might have seen the DA in New York taking GNC, Target, Walgreen and others to court for using houseplants as fillers and not even having any of the product in the capsules.
So lets get back to the patient I met. After the scan, I signed her up to purchase and try out our most potent supplements for a minimum of two months. After two months we do a follow-up scan, and if her antioxidant levels haven’t increased, or if she doesn’t feel better, she will get her purchase refunded 100%. so it is either a free trial, or she will feel better. Well, after two months when we met for our follow-up scan, she had a different bounce in her steps and and she told me she just finished a 4 mile walk!!!! She had no more pains and she felt like she was young again. Her rescan was much higher, so we had closed the so called “free radical gap”, saturating her body with antioxidants and removing all of her nasty and painful co-infections.
We have also seen the same results with fibromyalgia, MS, chronic pain syndrome, and arthritis…the issue is usually the infections which we can certainly remove. Our scanner is a true lie-detector (that is what Dr. Oz called it when he had the scanner on his show) of your immune system, and our pharmaceutical graded supplements meet all the requirements to work effectively.
I hope and pray that you will find what you need to get better, LD is a terrible disease and it seems like doctor’s are struggling to help!
- June 5, 2015 at 1:28 am
This so closely described my life during the first several years of my Chronic Lyme disease – except I never had that much money to put into treatment, as I was only 30 when diagnosed – really just starting my career after graduate school – lots of student loan debts and no family to help me pay for anything. If the story were continued now, after a decade of having Chronic Lyme Disease, it would be much darker, and bleak, and hope something very rare and hard to come by or believe in.
- June 8, 2015 at 11:34 pm
Yes, know your story all too well. The insomnia is pure torture. Too tired to live but too tired to sleep.
During the first 10 of my 20+ years with CFS/Lyme/Babesia/Bartonella/etc. I’d often go 3 days straight without sleeping a wink; then if I was extremely lucky, I’d sleep 10-15 hour straight. I averaged 1-2 hours of sleep per day.
Jobs lost, homes lost, friends lost, fortunes lost, dreams lost, years of lives lost. The cost of Lyme Disease (not even counting the treatment cost) is simply unfathomable.
We don’t have the energy to care about the Lyme politics and the controversy. We just WANT OUR LIFE BACK! Why is that too much to ask? On PAUSE too long (even if we can never REWIND the lost lives) we just want to hit the PLAY button again sometime SOON!
- July 5, 2015 at 10:05 am
hi cassie its a hard case to cover we went to malia in crete didnt like it at all the last day we noticed a few tiny red spots also felt like flu the worst was hallucinations we both put it down to the 92farehieght anyway we dragged ourselves home went to bed and awoke to a crazy rash allover from legs to arms nowhere else we went to our a and e and where sent home 5 nights in a row our doctor then gave us letters to be addmitited and still refused they said mosquitos NO WAY!! so the 10th day we went back a south african doc seen us the rash and said lyme but they couldnt test in our nhs system so £1,200 per test each by porton down came back possitive 336 drips iv later nearly a body shut down as liver was 2386 it should be 40- in a healthy person more tests and found glandular fever now where on doxycyline for life i think as the only attempt of cure is over 25,000 pound/dollars in usa we dont have that sort of money i wish all our goverments would take notice as this is not a one in a 100 people anymore its worldwide epedemic and us sufferes know how the night trmours the crazy jerks the cramps the fatigue the bad horrible things we say and yet dont mean as its frustration family sort of get used to you being tired etc but its depression inside knowing that great bed time is in 9 hrs time and knowing the nights sleep ahead is another day weve also cut out salt sweeteners and have raw ginger garlic on salads etc but as for your comment the pills are ready on a morning now swallow with a whole glass of water on an empty stomach to feel sick that you dont want to eat
- July 15, 2015 at 5:08 pm
Having survived Lyme disease for 9 years now l can only say….. this is a disease for the individual who wishes to experiance t all when I comes to serious health issues. It has robbed me of my health, stamina, future and finances.
Love to all who suffer along with me.
- July 15, 2015 at 8:54 pm
I was diagnosed about 6 years ago but have been sick about 15 years. I have tried everything – including the antibiotic cocktails, nothing has worked. I am still disabled and living in hell. I have been on tons of different drugs but stopped most of them because they hurt and didn’t help. I am barely surviving, not living. I often think I want to die, but I would never do that to those I love most. So I am trapped in this hell. I can’t even have my own wedding, as I am to sick and in too much pain to even try to plan it. I had to quit my job over 10 years ago, used up all my savings and now have only disability to survive on. This won’t pay for any treatments I need. I am almost completely alone. My family is abusive and toxic an Mormon, so to them I am always living in sin, one way or another.. I at least have my life partner/fiancé but we both have chronic illnesses.
- July 19, 2015 at 7:53 am
Been there and am still there. As you get older it is worse . You have already spend most of your retirement on IV that did not work. A year with a pic line . I now have every joint in my body causing pain. Back surgery , knee replacements. Pain meds. multiple other drugs . i am over the medicare limit ,in the so called donut hole.
So I hate insurance companies,having worked for one for a year did not make me like them any better.
- July 19, 2015 at 1:52 pm
Jenny you are such a great writer….telling all of our story so eloquently and thoughtfully.
- July 20, 2015 at 6:19 am
Check out LDI ~ Dr Vincent in Alaska came up with this protocol –very impressive- i start my first dose Sept 3rd. God bless you all!!
- January 31, 2016 at 7:43 am
Jenny, . You are an amazing writer. You reminded me of where I was, and not to take for granted how well I feel now. I tried many things and finally colloidal silver and rifing with DP100 got me symptom free from lyme, ehrlichiosis, babesia, bartonella and mycoplasma 7 years ago. Hang in there. It is possible.
- February 1, 2016 at 1:41 am
It is so heartbreaking to read all these stories. I’m a lymie and I can relate to a lot of the points, but I have been so lucky to have a supportive family and to have found treatments that work and are not expensive. God help us and heal us all.
- May 5, 2016 at 5:17 pm
What worked for you?
- May 6, 2016 at 1:05 am
I’ve used a rife machine mostly, with some antibiotics (teasel, colloidal silver) and salt/C in between.
- February 2, 2016 at 10:13 am
Thanks for sharing! Been going thru the exact same problems for 8 years now turning 50 in July…. It’s just me had to move in with my mom life has just been put on hold… keep holding on telling myself it will get better an it will one day if I can keep holding on. I say it is what it is God has a reason this is the way it is but I am ready to see the sign of why.
- March 26, 2016 at 10:38 pm
Imagine seeing that light peeking through the curtains, and instead of the alarm waking you up to take your pills, it’s your 3 young children. Another day of flu-like torture, while trying to care for little ones. That’s my day. And sleepless nights. And the another day….
- March 29, 2016 at 7:08 am
I had Lyme in 2003 and was sick for 1 year before a wonderful DR. new how to help me , i get infusion ( Gammaglobulin) every 4 weeks now and are still getting it now 2016. I feel like a new lady , but need to have infusion for the rest of my life and that is ok i feel good. hope this can help someone. Go and se a ONC / Doctor.
- March 23, 2017 at 2:09 pm
I completely relate to this. I became severely sick and completely disabled about about age 32. I am now 47. i have lost 15 years of my life and it looks like nothing is going to change or get better. I had graduated from Graduate school. I was working full time doing what i had wanted to do since I was a kid in high-school, I was working hard to create a good life, and then almost everything was taken from me. People like to point out that – well at least you still have this or can do that – but in a way it is worse – it is just enough to keep me holding on, keep me trying, even though I am in agony EVERY single day of my life. Yes, my life is on hold, but it is also on hold while experiencing a wide variety of pain and sickness, and never ending grief and loss. People keep talking about grieving and moving on – but I am always losing more – every single day – and I don’t even know how to truly heal when I am in too much pain to think.
- April 1, 2017 at 3:37 am
It is so sad to hear your story, April. :'( I’ve had Lyme since I was a kid (I’m 35 now) and it stole a good chunk out of my 20s, as well as pieces elsewhere. I want you to know there is hope. I have been doing treatments for the last few years and have gotten significantly better. I use a rife machine. I always try to tell other people suffering with Lyme about it, because sometimes I think people believe there is no way to ever get better, but there is. Don’t give up! Check out Bryan Rosner’s work and see if it’s something you’d want to try. I hope you do. 🙂
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