When family members don’t believe you have Lyme
A father regrets that he failed to believe his daughter really had Lyme disease. His message to others who have family members with Lyme: “Lyme disease is real, the pain is real, the problem with logical thought is real, the lack of energy is real.”
From a man who calls himself “Lymedad.”
“Dear Family of a Lyme disease patient,
I am writing this letter to all parents and family members who are witnessing their children, wife, son, father, aunt, uncle, cousin, etc. struggle with Lyme disease.
I am one of you.
For more than six years my daughter has suffered through this ugly, dark disease.
She has experienced horrible migraines, severe joint & muscle pain, nausea, vomiting, extreme fatigue and loss of her ability to speak or think logically (these are just a few of her symptoms).
She has become unable to work. She has been forced to move back into our home at the age of 23 (she is now 29). She has virtually lost her 20s, one of the most productive and exciting times of her life.
We have taken her to every known medical specialist in southern California as well as three different general practitioners.
She has been diagnosed, at differing times, as having Chronic Fatigue Syndrome, Chronic Pain Syndrome, Fibromyalgia, Lupus, Psychosis, and MS (please notice that all of these are either syndromes or descriptions of symptoms; none of them are diseases).
For the first four years of her struggle, I was not a good parent, even though I thought I was.
No outward signs of illness
My daughter didn’t have any outward sign of her illness. She looked “normal.” After many, many blood tests, MRIs, CAT Scans, x-rays, psychological tests; everything came back “normal.”
I was, and still am, one of the world’s biggest cynics and skeptics (I’m originally from Missouri – so “Show-Me.”)
Surely if you are as sick as you say you are, there must be something that will show up in your blood tests or on x-rays.
You can’t possibly be this ill and not have something tangible to show for your symptoms.
You’re either just faking it or you’re lazy or it’s psychosomatic or you’re trying avoid the real world.
Get off your lazy butt and get some exercise or get a real job or face up to life like the rest of us.
That’s the way I approached her illness. It’s time you took control of your illness and will yourself well.
I was so far off-base. It took an outstanding Lyme Literate Medical Doctor to show me the error in my approach with my daughter and to show me the reality of this disease.
Suffering from ignorance
My daughter and I have both suffered because of my ignorance. (I’m not saying all of you are ignorant, I’m saying I was ignorant. To be ignorant simply means to be uninformed not stupid). I am still working to rebuild the closeness we had before Lyme.
Lyme disease is real, the pain is real, the problem with logical thought is real, the lack of energy is real, etc., etc., etc.
If your child or family member has been diagnosed with Lyme disease, they are just as sick, if not more, than someone who has a more “traditional” illness, like lupus or multiple sclerosis or cancer.
I’ve done all the study, I’ve been with my daughter at all of the appointments, I’ve watched the misery she’s been through.
Hey they just can’t help the way this disease treats them. It’s not their fault.
Family support is essential
We as family members need to be there to support them. They don’t need our pity. They don’t need our skepticism. They don’t need our criticism.
They need our understanding.
If you as family members will take the time to study this disease, you’ll see that it is real. The little buggers who have invaded their bodies are real and they are making our loved ones sick.
Please spend the time you currently spend trying to figure out why your loved one acts the way they do really studying the disease. There are volumes being written on the internet as well as new books being published everyday on this disease.
We can’t possibly understand the way they feel, not unless we have the same bacteria in our bodies.
My daughter has a long way to go before she’s back to where she was six years ago. She has a lot of work and pain to endure before she can get there.
She certainly doesn’t need someone who claims to love her causing her any more pain than she has already.
Let them know
Families, from one who has been in your shoes, please let them know you love them.
Let them know you’re there to help them.
Let them know that there’s no way you can possibly understand their pain, but that you will try to understand their illness.
I think one of the most important things I’ve come to learn is that my daughter’s disease may be God’s way to teach me a lesson.
I’m not saying God gave my daughter Lyme disease, but He may be using this disease to teach me how to love, how to be patient and how to be more understanding.
I wish you all good health and I hope that none of you will ever have to experience what our Lyme disease loved ones are experiencing.
In 2007,“Lymedad” posted this message on a Lymenet discussion board. In 2009, I tracked him down and he gave me permission to post it in my blog. Since then, it’s made the rounds on the Internet and has been re-posted on many blogs and many websites. I’m reposting it now, because his words of wisdom continue to ring true.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, Vice-president of LymeDisease.org and Director of Communications. Contact her at dleland@lymedisease.org. On Twitter, she’s @dorothyleland.
That was so heartfelt, accurate, and honest. I’m glad this woman has a father that gets it now. More need to read this. Love it.
Please stop comparing Lyme’s Disease with MS- and probably Lupus too although I don’t know much about that. Multiple Sclerosis is most definitely a DISEASE. It’s not a “syndrome” or a symptom of a syndrome. My husband had a progressive form of MS and passed away 4 1/2 years after his diagnosis. Most MS is slower in the progression but his wasn’t. Many of us are caregiving spouses and family of those with progressive MS (whether it’s PPMS or SPMS) and our spouses are bedridden needing total care. I take nothing away from the seriousness of what Lyme’s can do to a person but please understand that there is a whole world more to MS than most understand.
MS is often misdiagnosed as Lyme disease. You can’t tell people to stop comparing it to other diseases when you have zero idea what lyme disease is. Lyme can paralyze people, making them bed ridden, and it can kill due to serious co infections that co exist, especially in the elderly.
I meant lyme disease is often misdiagnosed as MS*
Obviously this isn’t always the case, but it happens a lot, because there is no real testing for MS. Ignorant doctors lead to ignorant diagnosing.
So my point is, it mimics MS and many other diseases, so yes it can be very much compared to it.
Yes Jay you are correct. Lyme is often a misdiagnosed Lyme issue. I suspect as much as 70% in MS diagnosed sufferers under 45 years old. I have seen through the years as a lyme advocate and sufferer. The MRI done to measure the brain scans for MS measure the white blotches in the brain. Lyme also creates these lesions and mainstream Non lyme literate Doctors do not know this or refuse to acknowledge this. I don’t know this persons health issues and can not predict his diagnosis because I am not a doctor or as I call them sometimes. Gods in white coats. But we must keep in mind the nick name for lyme is the great imitator.
Beth Friedlin,
I am so very sorry for your husband’s suffering and for your loss. You are right. MS is horrible and devastates lives. I lost a friend to MS, and another friend currently suffers with it. I have Lyme. I guess we compare, because that’s how humans figure things out. But while getting out the word about how bad Lyme is, we shouldn’t negate MS. Thank you for reminding us. My thoughts and prayers are with you.
First let me say I am sorry about your husband. It sounds like it was a painful and horrific time in your life. I don’t see any where in this article where the author compares MS with lyme disease. The only thing said was the daughter received diagnosis ranging from x to z. Unfortunately, some people with lyme disease are mis-diagnosed as having MS because one of the predominant symptoms of MS is lesions on the brain and lyme can cause the same type of lesions. There is a lot of people with tick borne illness that are bed written with unfathomable symptoms. They are both horrible afflictions.
I don’t believe this gentleman was saying MS was a syndrome. He said it was an illness and just wanted people to understand that Lyme is as serious an illness. In fact, many people who actually have Lyme disease are misdiagnosed as having MS (because of the similar symptoms) and are not getting the proper treatment because they are misdiagnosed.
Beth,
I’m sorry you lost your husband.
Please understand that politics and profits are powerful. What the IDSA and CDC claims–are lies that are profitable.
That’s why we fight to counter the IDSA and CDC. A whole lot of folks with MS have Lyme disease and when they get great care from an LLMD and when they can afford it, from a holistic doctor, they stop the MS process. It takes a long time. It’s not what the IDSA and CDC say that it is. Nor most all of the press.
I had progressive MS, also known as aggressive MS, also known as malignant MS. Two-and-a-half years of excellent Lyme care from an LLMD, plus babesia treatment, and we had stopped the MS process and I was 90% better, overall. That was years ago.
A lot of citizens of Lymeland have been saying this for years and years. It’s true!
Very accurate Diane. Thanks
You may think us Lymies don’t suffer as much as those with MS, but you are sadly mistaken. Not taking anything away from MS patients, but Lyme has me bedridden, in crippling pain, fatigue, gastro issues, etc. I’m only 35, but I’ve suffered my entire life because of one tick bite at she 11. My daughter is having to suffer because I’m unable to take her places, have fun with her, help her with homework, or even shop with her. The only friend I have now has to come over and watch movies with me, or just sit and talk with a cup of hot tea, because I can’t physically “do” anything with her. She goes off to college next year. I’m literally wasting away.
My husband is in end stage liver disease from a hereditary liver disease, and is waiting on a liver transplant. Being as sick as he is, IM SICKER THAN HE IS. And that’s sad! From ONE LITTLE TICK! And can I get treated or medications to help me?? NO, I can’t. Because Lyme patients have to pay out of pocket for our treatments. And with Chronic Lyme, you can’t work, so I can’t afford treatment. Just wanted to share with you the REALNESS of this disease that no one seems to understand. Including you.
Thank you for posting this. I have alot of family members who are ignorant and uninformed on Lyme Disease. I would send them all the links and websites for them to understand how sick I was and that I wasn’t faking it, because on the outside I dont look sick. But, I have come to accept the fact that after 22+ yrs of being sick, I dont need to do that anymore. So, I put that effort in being an activist when I’m able to and to educate those that want to know. I have missed alot in my life, but I have also learned alot of lessons and I hang onto those precious moments and memories. Again, thank you!
You go girl.
Very accurate! MS, Lupus, Fibro, CFS, ALS, and so many others is Lyme Disease.
Don’t forget 70% Alzheimers sufferers could also be actual Lyme sufferers. Ask Dr. McDonald at Columbia U. or the movie UNDER OUR SKIN.
I think you missed the point of his entire post. The point was he felt the same way as you that MS (along with all those other “diseases” he mentions) is separate from Lyme disease when in fact, the MS was a result of an infection, in this case Lyme bacteria. Yes, MS is real, but the cause of MS is becoming more and more prevalent in those people also having Lyme and improving with Lyme treatment. Also the fact you call it “Lyme’s” makes it apparent you have no idea about Lyme disease and should do some research to educate yourself. There are hundreds, if not thousands of people getting treated for Lyme disease that were also bedridden and with MS symptoms but have improved with the right Lyme treatment. With that said I am sorry for your loss.
I think this Dad’s sentiments are ones that all of us who have had, or supported those with chronic health problems can understand, and probably on some level felt. I think the one mistake made was when he wrote about how (is his words) Chronic Fatigue Syndrome, Chronic Pain Syndrome, Fibromyalgia, Lupus, Psychosis, and MS are not diseases and it felt like he was saying that therefore they weren’t as real as Lyme disease. I know I jumped to outrage at that moment after my own experience of chronic fatigue syndrome and having an incredibly hard road to recovery. CFS may not be a “disease” but it’s also not something that can be cured by the mentality “get out of bed and back to real life”. However I think that those of us that jumped to outrage at his words have to realize that at the least his words were just missed used and not meant as a put down to those who have or have loved ones with those conditions but just as a discription of his personal experience. And at most they are words expressing his ignorance about those conditions, which let’s be honest unless you’ve lived through them you can’t really ever understand how hard it is for everyone involved. So I think just like we’ve learnt through our experiences with these chronic health conditions to be understanding and compassionate of those who aren’t at the same place in life that we are, can’t we apply this knowledge and wisdom to all situations and people and grant forgiveness for his slip up?
To me he did not seem to be saying in any way that CFS and other syndromes are not real. He seemed to be saying that they are not underlying causes, in and of themselves. They are real syndromes… real collections of symptoms. Symptoms which are often caused by Lyme disease. (I have CFS and Fibromyalgia. I know that they are real syndromes/illnesses. And the underlying cause of my FM and CFS, in my case and many others, is Lyme.)
It is a comfort to know there are people out there who finally stand up and get educated, and sadly, it is after much ignorance (ignoring the afflicted person) and not even trying to understand the person’s disease because “the tests were all normal”. So many times there are NO tests. Being handed a CFS and Fibromyalgia diagnosis after being sure it was Lyme, and then having a second “test” show I did not have it…well, I also have lost way over a decade of my life because tests are often not accurate. Is there really a good test for Lupus? (sometimes a strange butterfly marking on the face or high inflammatory markers…but other diseases cause inflammation too, for MS? (lesions other diseases also cause), for Depression?…um, no markers but a doc can label people with mental or psychiatric illness in 10 minutes flat. (Yes, one doc tried to tell me that depression CAN happen clinically overnight with no stressors (aside of a physical illness). Alzheimers often has no neuro “markers”. Parkinson’s? ALS? Medicine is often only a best guess, and often they get it wrong a HANDful of times before a sure diagnosis. Some will die before they get it right and never will know. For a disease like Lyme, with an evasive and stealthy bacterium and an army of tag-along pathogens, a high % is missed. I applaud this father who stepped up to find answers and started LISTENING. I’m awaiting some of my family to do the same. People get used to you being that “sickie” and just go on with their lives. The difference they can make in just being there, talking, helping with appointments, reading and finding info and new medical advice, etc…can be the difference between hope and hopeless.
Wow! What a great letter. It takes courage to admit you were wrong. We all learn so much by our mistakes. Hopefully this letter will reach more…
I, too, have sadly felt that family members are not believing I have Lyme disease. I can actually even look “pretty” and be sick with Lyme. It especially hurts me that I have appealed to my insurance three times and been turned down because I can’t seem to educate them on what Lyme disease is and what is needed to fight it. The insurance doesn’t seem to respect or acknowledge that I have a right to be as healthy as anyone else can be with treatment. Couple that with doubting family members and you will find true heartbreak. I have been sick with Lyme for 7 years now. I hate that I still have to prove I have Lyme to anyone; it only adds to my suffering. I find that you can’t educate people who won’t listen to you. Help me get the word out to everyone whenever possible! There are so many uneducated non-believers! TEACH!!!
For all the above readers, I totally understand. I’ve had three lyme infections stacked over a period of 19 years, and had no idea what was wrong with me. Neither did anyone else. All the AMA trained robot/doctors were a sick joke. I finally found a lyme specialist, and have been on antibiotics for nearly a year. It sucks when 20 years of your life just disappeared. Friends and family wrote me off as nuts, so that was a great solution…
Be very aware that some lyme persons become highly sensitive to electromagnetic fields from cell towers, wi-fi networks, wireless home phones, and smart meters. The symptoms are very similar to MS or Parkinson disease in some cases. For an excellent presentations of how lyme disease can be exacerbated by RF frequencies, see Dr. Dietrich Klinghardt’s YouTube videos regarding lyme and EMF. It could save your life…
Hopefully word and stories like this will spread quickly. It’s hard enough being an adult and dealing with this, I can’t imagine being this age and or younger.
Dave, I was 17 when I got really sick with Lyme. It took my 20’s. My friends went off to college and I stayed home, sick. I never got the rites of passage, and cannot relate when people talk about college parties or taking road trips with friends. The first 4 years of my 30’s (after finally being diagnosed) were amazing! Never knew what it was to feel so good. Am in a bit of relapse now, but am hopeful I can get back to where I was a year ago.
I hope this woman gets better and is able to experience true health and feeling like a whole, joyful person.
I have been ill for ten years it’s a very scary journey,my family relations are on the Brink,friends are going,loneliness the list goes on,this is NOT self pity,to be understood is huge and it takes one to know one.fellowship Is VIP as is in AA (12 steps)etc,
WHEN THERE IS A CURE FOR LYME DISEASE. THERE WILL BE A CURE FOR MANY AUTO IMMUNE AFLICTIONS AND DISEASES. Lyme misdiagnoses come from all of the body’s possible ailments. This is why it is called “The Great Imitator.” And the Non Lyme Literate community is not quick too look at this. I cover a lot of this stuff at my advocate blog at throughchallenge.com.
I’m having trouble with the Captcha codes. I have Lyme Disease. My eyesight is going fast. Shame on you.
I have a horror story also about Lyme and Doctors and family and friends not believing me. When I’m not so tired and in so much pain I’ll share my story. Every day I try to make Lyme pie out of my disease. But, some days I give up and quit all my meds and Insulin because I don’t have the energy or willpower to live. I’m afraid I’ve become the crazy lady to everyone. Everyone except my doctor who is now treating me. She feels my pain! I have Fibromylalgia, Morgellons and Lyme which I read is all kin to each other. I’m also a Diabetic with a A1C of 10.5. I also have other health issues. My family and my husbands family have all deserted me. I have no support with the exception of a couple good friends. I have to take care of myself my husband and three dogs. I’m 67 years old. It’s been hard. I’ll probably die being the crazy lady. Shame on you family members and friends. Also the Doctors and the Dentist I was using. I’ll write about experiences later. This crazy lady needs some rest. Thank you Ruthie
Ruth, I am so sorry that you are in the situation you are in. There is an undeniable stigma against Lyme Disease, Chronic Fatigue Syndrome, and Fibromyalgia that is really causing a lot more suffering than necessary. The attitude is that just because these chronic illnesses are almost universally not fatal you are just expected to live with it or “go get some antibiotics or get up and exercise or drink some 5 Hour Energy.” Sticking with Lyme here, what people (and most non-Lyme literate doctors) may not be aware of is that Lyme bacteria are able to disguise themselves when the antibiotics go into effect so they are undetectable by the antibiotics. This is where stalemate occurs, where the bacteria go into hiding to escape detection, and as a result most of the individual’s symptoms (brain fog and inflammation, joint and muscles aches, internal muscle spasms, neck tightness) disappear. As soon as you go off the antibiotics, well you know what happens. All the symptoms come back because the bacteria have no reason to stay in hiding anymore as there is no immediate threat to their survival (the antibiotics). They have two favorite places to hide: the joints, and in and around the brain and cerebrospinal fluid. Aka you will need a lumbar puncture or brain scan at the very least to have a shot at a true diagnosis. Fortunately there are options for people who have little support. There is some really great info on youtube if you know how to navigate and pick and choose who knows their stuff. Aka do not listen to the happy go lucky teenager who said that antibiotics totally cured her and she did not have to do anything else to get well. Listen to the people who battled it chronically for years and tried and failed multiple times before they reversed it. My prayers go out to you today ma’am. May God be with until you are well.
You don’t get it til you GET IT!!!! what an awful dark disease to have to go through this alone…I am struggling with Lyme & Co-infections so I know it’s very real…so glad you found out about her illness before it was too late. God bless you!
I stand by my son 100% but let me tell its hard… my son is now on herion and has been in jail a few times…. No one believes me that he does this b/c of lymes… they said I sticking up for my son… im I? Im I in denial? I revived my son therefore I don’t think im in denial…. If authority would just help me to help my son they would see what im talking about…. its not my son fault… I cry every day…. Im just trying to keep him alive and out of jail until November 11 that’s when we go to Washington DC… on November 12 we go to court d/t when my son OD there was herion in the house… dumbass me didn’t toss it out… I was tooo busy reviving my son…. so they put a warrant out for his arrest and arrested him at his work…. he had no drugs on him but when they looked in my truck they found herion…. so he has a double wammy….. this has been an on going thing with authority….. Im so sad!
I worked with a nutritionist and chiropractor. He contracted Lymes disease from a tick while hunting. His symptoms were very severe. Once he was diagnosed, he started himself on a vitamin regiment he was able to create with his knowledge of what God has put in this good earth. He took no antibiotics or medicine prescribed by Drs. He is well and healthy and working. Dr. David Beisiegel if you need help to complete recovery.
I just reblogged this. I’ve been there. I’ve been told to get off the couch and quit feeling sorry for myself. Accused of being an alcoholic (yeah – as i got sicker, booze not tolerated at all) and a drug abuser (hair test anytime). Heart valve issues from the infection(s) were blamed on Adderall. I’ve been called crazy by 99% of the people i know – and feel it a lot of the time – but i still have Lyme. And I have Lyme rage.
And it sucks, for all of us. Not just for me, but for ALL of us. whether we can afford treatment or not, whether we look healthy or we look sick. It sucks.
and it sucks worse when our own friends and/or family members turn their backs and pretend it isn’t real. And while I have forgiven – its not something so easily forgotten.
Especially when you are invited for Christmas but told not to discuss it at all – and not to get mad at anyone – to “control your flares”.
Anyone who says that doesn’t get it. just sayin. only way to control my flares is to medicate and sleep through them (NATURAL medications by the way – WHEN they work)
The beauty of life, is the new discovery we discovered about ourselves and share what you learned with humanity. Thank you for sharing about love, fear, and of our ignorance of the unknown. Thank you for your courage …..
It’s heartbreaking to hear these stories. I’m glad the Dad realized his daughter was really sick and needed his support.
I’ve had Lyme disease and related co-infections for almost 4 years now. I’ve been fortunate in that my family never doubted the depths of my illness and have loved and supported my care and healing throughout this harrowing battle.
In the beginning I heard the unfortunate, “You can’t get Lyme disease in Missouri” mumbo jumbo by numerous doctors. Nothing could be further from the truth! I truly cannot imagine how much more difficult it would be if my family did not believe I was sick.
But we all have to start somewhere I suppose. Honestly, I knew very little about Lyme disease myself before getting bit by 2 tiny ticks that turned my world upside down.
Through advocacy and education we can help people understand what a serious disease Lyme is and help our fellow brothers and sisters who are going through it every day.
I have fibromyalgia and other problems. I have. Been. Called. A fake and been told. My. Illness. That. I had. For four years. Is not. Real
My. Family. Don’t surport me. At. All.
The only. People. That. Believe. Me. Are. My. Boyfriend in. U.S.A. My friend who has the same thing. Wrong And. Doctors. That treat me
I. Hate. My life I hate. This. Illness I have loads. Of. Thoughts thinking. Maybe. It’s. Better. If. I weren’t. Here.
??????. Other people. Who. Don’t. Have. This illness . Have no business to jurde
Cos. they. Could. Be. ILL. And. It could. Turn on. Them.
Fibromygia. Suffer.
Hi Johannah and everyone else. First of all, I understand your thoughts of thinking “maybe it’s better if I weren’t here”. I’ve been there many times. For me, as I expect it is for you and others is, we don’t want to die or commit suicide we just want the PAIN to stop!!! The pain of; ISOLATION , being misunderstood, fear of unknown heath issues, continuous doctor appointments, having the fear of falling all the time, pretending to be happy and healthy, being broke, losing the ability to work, being called nuts, having your house in disarray, losing your ability to drive, loss/fear of losing your children and/or significant other, losing the ability to care for your beloved pets, being confused all the time, missing your GRANDCHILDREN’S EVERYTHING, not being able to think straight, losing your words, losing the ability to handle your basic needs, not DANCEING anymore, not being able to travel,not cooking a home cooked meaL, being depressed and the constant accusations like, you don’t look sick, your to young, it’s all in your head, my friend had Lyme and took medicine and feels great, your just stressed out, there’s no such thing as chronic lyme, Fibromyalgia ect., it’s the medication your on, you just need to exercise more and YOU NEED TO LOSE WEIGHT!!! The “pain of” list could go on and on. On top of my 15 or so other autoimmune diseases (most after lyme infection) has ruined my life!!! It has robbed me of the simple pleasures of life, my grandchildren and a piece of my heart and soul. Remember, you are truly worththy of being here with the rest of us! It’s the lyme that needs to go!!!! So please get yourself into a good support group for people dealing with Lyme. Unless someone has/ or had Lyme they will never, ever truly understand the horrific effects of Lyme Disease. JOHANNAH please keep me posted as I care!!!!!
A friend,
Patty
I SO needed to read this today!! I live with Chronic Lyme, so I know the Hell that your daughter has endured firsthand! I commend you for owning up to your mistake and for turning around, believing and helping your daughter! I wish her and you all the blessings in the world!!
Thanks so much for writing this article!
God’s Blessings be with you and your daughter. (Thanks for sticking by her)!
I don’t have Lyme’s .
I have ROCKY MOUNTAIN SPOTTED FEVER. (Tick Bite)
I will keep you in my prayers.
AMEN,
Diana