Hey, thank you so much. Absolutely, I put all of my faith in The Lord for my healing. He is using this unfortunate illness in my life to bring good to others and to myself in the end I believe. Thank you!
amen brother. you have such wisdom. keep thinking and processing and discovering the intricacies of the path you are on. i am twice your age, been sick probably close to your years and take great heart in what you are saying. Be well, Hazel
Thank you for the familiar feelings and truth. I hope and pray that my family and friends take the time to watch and listen to you video, and that they will finally understand and show compassion. God bless you!
Beautifully done! I know how difficult it is to keep your head together while writing a blog or recording a video, and you nailed it. Thank you for being a great advocate!
I applaud you for your videos and for taking the words out of my mouth. This is definetly not a one size fits all disease. Those of us with the neuro version have been dealt an insidiously bad hand. I wish you well and speed on your way to recovering from this nightmare. Keep the videos coming when you are able or so compelled and thatnk you for making us feel a little less alone and crazy.
Great job with this video! I have an autoimmune disease too and am trying to spread awareness as well. Our illnesses don't get as much awareness as they should. thanks for spreading awareness for chronic illnesses!!
Thank you so much for this video. I don't have Lyme but I have an as yet undiagnosed mystery stomach/nervous system illness and this video just really sums up my emotional and physical state in 15 minutes. I'm going to show my friends and family this video because it really just sums up exactly how I feel every day. Thank you, thank you, thank you so much!
I don't have lyme but I do have an autoimmune disease and this was such a wonderful video to help explain what a chronically ill person goes through and how they feel, especially how people assume you're fine when you go out when really you feel terrible. I've had a hard time explaining this to people in my life but I sent some of them this and I think it'll help them understand a little better. Thank you so much and I hope you're doing well!
I suffer with Lyme, and have for many years. I always have a tough time explaining to people what it's like to live with a chronic illness, and whenever I try, I come away feeling I didn't really give them the whole picture. What makes it worse is that I've had Lyme for so long that - except for my family - no one that I currently know or interact with knew me before I started getting sick. You did a great job explaining things here, and I appreciate it. I plan on showing my friends this video
Your vid really touched me, everything you said was soooo true. You raised some good points about how others see a lyme patient, and how we see ourselves. It can be a scary and lonely disease sometimes, glad you have some family support. Thanks for sharing, your talk made me feel less alone. (( healing hugs))
thank you! I think people need to hear this. I am glad that I was able to put something together to help others. you're in my prayers and I hope that you get the financial resources you need for your treatments. god bless
Hello! Thank you for your kind comments :) nice to meet you from Romania! I have many friends in Europe and a good friend in Slovenia who is dealing with Lyme and other issues and there is so little knowledge by the doctors in that area about Lyme and co-infections. I hope you are fully healed now! god bless
This really touches me because it is exactly what i am going through. I would love to hear about treatments you have been doing or anything. I have Chronic Lyme and its touch daily but you have to stay positive. God Bless!
Yes! I agree. I know of Cutler's work and it is very good. I am currently focusing on Methylation support with Dr. Amy Yasko. Both Cutler and Yasko are on a similar wavelength. Getting methylation going and working on mutated SNP's can get the body to detox itself and move metals out leading to healing. Thanks for the reminder, I need to buy his book!! :)
Dude, you are such a freaking Genius! Your first video I watched was when I was finally diagnosed in August 2012, I shared it with my whole family because I felt that it so well described what I had lived with for 6 years being misdiagnosed. I had a horrible day today, just terrible! but tonight I went through some Old picture albums of when I was a kid (25 now) and I almost started crying b/c I was reminded of who I was before 6 years ago. Perfect video! Perfect Timing! Thanks man, all I got
So sorry to hear about the undetected lyme for so long. We can and will get better. You didn't make it 20 years to not get out of this! you're in my prayers, good luck my friend!
Great video LymeGuy1. You are so articulated about how Chronic Lyme changes who you are. I love that you explained how many roles that we have to take on. I have finally been making great progress this past summer and I'm still improving. Interesting thing I'm finding is that the people I have met while I have been sick have only known me as being sick and now that I'm improving they are telling me that they are shocked how different I am. Really interesting. Good luck with your treatment.
Thank you, from the bottom of my heart, for taking the words right out of my mouth. Every word you said is exactly how I feel about living with a chronic neuro muscular disease called CRPS. I could never have described things as well as you just did. I would love to know how you are doing now. I pray you have gotten much better and are out there living life, yet fear you have slipped further down this dark hole, which is chronic illness. Much love to you.
Thank you! Yes, i feel cheated in a way that my young years are being stolen away by an awful illness, but I have hope and faith that what will come after will be more rewarding than what I would have achieved on my own had I never fell ill. Hope you are doing well. god bless
I suffer from many chronic diseases so I feel your pain. I have to say thank you for making this my six year old has chronic Lyme disease as well as aspergers,ADHD. He is always sick. I posted you on my Facebook so maybe people will open up to this invisible disease its terrible. You made me cry tears for and I will always remember you throughout my life. When my son flares bad I will know he is not alone. I will pray daily for you as I do for him.
Bless you for this. I am a 59 year old woman who had a tick borne illness 17 years ago....did not test positive then and still does not consistently but had an acute illness and actually had the tick bite and classic rash...still fought to be diagnosed and treated. I now have fibromyalgia and Grave's Disease and I KNOW there is a link! ALso both of my now grown children had CFIDS in school years and we are all to familiar with the challenges of invisible illness. Best wishes to you and keep up the fight....I am sharing this w others!! (btw,,,my health has never recovered and I am chronically ill and KNOW of what you say... just going to the grocery can be the one goal of the day , on a good day,,,,then I crash as you say.) I am so sorry this happened to you at such a young age!!
thank you... as someone else commented, you absolutely hit the nail on the head with this video. i have been called ' a hypochondriac, malingering, lazy (after 17 years of working as an RN), attention seeking, crazy, somehow responsible for being ill, burden, unwilling to 'get better' even though no one considers me ill (?), a disappointment, etc etc etc... from not only multiple doctors, but 'especially' from family... firstly i really don't understand the whole 'you dont look sick' or 'invisible illness' comments coming from people i *live with* who have SEEN the inability to get out of bed, the occasional passing out, the way my heart races and goes into different arrhythmias (i have a small HR/BP monitor) when i am just sitting there, the vomiting, the curled up in a ball crying type of headaches, the constant 'IBS', the super high heart rates and blood pressures etc... because when all of that is going on, how can they say it is 'invisible', or that i dont look sick? even when multiple doctors from different specialties bring them in to try to explain it to my parents, they will just sit and nod their heads as if they are truly listening, then continue to behave as before, often times totally twisting the words of the Dr. to say what they wanted to have been said... i *seriously* can not even wrap my head around such denial, and ignorant behavior. i *know* that no one will be there to support me, which is bad enough, but they actually attack me over it. so, fine, dont care enough to be there, i am used to having to pull myself out of awful situations alone... but for damn sake, at least leave me alone about it and stop antagonizing me! okay, the message got a bit long, and out of emotional control... i apologize. but this really is the *truth* so many have to live...
lol oh god hunny I so know how you feel though, I've literally been writing a book, because it's all sending my mind reeling. the one time we seriously need help, all the thousands of times in life we've helped others...and those who are meant to love us question everything we are going through! much love to you x
It is so sad that we have to 'Look' sick in order for people to understand this. I'm so sorry you had this experience. I too have had to deal with this and I know how hard it can be. I wish you all the best in finding healing/cure for your condition. god bless you :)
this makes me so glad that I made this video. Truly, the best thing you can do for someone you really care about is to just be there for them no matter what. Most of all we want is someone who will listen and stick by us and not leave when the going gets tough. I applaud you for learning about this for this person!
Thank you so much for doing this video. I have shared this on my fb page and group. Be very proud of who you are. I have Fibromyalgia and I live in Ireland , people here have not even heard of fibro let alone a chronic illness. you say it all in this video. God bless you
@maddis1987 I'm sorry to hear about the person with lyme you are close to. On behalf of them, I commend you for taking the time to learn about this. Thank You! My best advice to you is to simply ask that person how they are doing as often as you see them. When they are feeling bad, sympathize with them. Sometimes we just want someone to tell us "you know... that stinks... I'm sorry... I can only imagine how you must feel." It's ok if you don't know what to do to help. Just being there is huge!
It's the old "you don't get Lyme til you get Lyme" deal. I have never wished illness on anyone in my life but out of desperation I sometime wish people could just spend 5 minutes inside my brain and feel the heaviness,anxiety,fatigue,deal with the blurriness and floaters,the migraine headaches and stiff necks,eye pain,depression,dark and disturbing nightmares,and on and on. I've tried it all and I am still sick, 7 years and counting. I am twice your age and my life is lived in fear. Cont.
While I don't have Lyme disease, or any other chronic physical illness, I can relate to the sentiments in this video. I am a long time sufferer of chronic clinical depression. I think that mental illnesses can be just as serious and some are just as misunderstood. Some people I see on a daily basis would never believe I am depressed, they just think I am tired or something. Some that I have told simply drift away over time as they don't want to be around me.
wow, thank you, i haven't even finished your video, thank you for the honesty!! (war a battle couldnt put it better) " at least in regards to the avocation of chronically ill people "
Thank you :) It was out of my own frustration with the lack of recognition that I made this video and I hope it helps others with invisible illnesses. I pray that you are healed! god bless :)
I have Lyme, too, and I really related to this video. I'm sixteen and it's hard when all of my friends are going out doing things and I end up getting left out. Not too many people understand just how truly awful Lyme is (as well as any other chronic disease). It's like people feel uncomfortable and don't know how to respond when you tell them. I hope more people see this video and can sympathize with what we are really going through.
YOU ARE SO SO SO RIGHT! I have a horrific nerve disease called r.s.d. or c.r.p.s. They stand for reflex sympathetic dystrophy or complex regional pain syndrome. Basically a simple nerve injury turned into this disease as my injured knee created a nueroma or a nerve with many many more nerves that branched out from it. Then they branched to my spine and havoc started. My good cells in my spine mutated and traveled to my brain causing me to live a nonfunctional life with no quality in it. The pain level IS THE HIGHEST THEN EVERY DISEASE OR DISORDER. It surpasses cancer by a 1/3 BUT THE DEVASTATING PART IS THAT THE WHOLE MEDICAL INDUSTRY, LAWYERS AND GOVERMENT DO NOT recognize the severe suffering we endure resulting in many suicides. I could talk about the horrific symptoms and situations I go through, however this text is for you. I know your heart, feelings, emotions and state of mind. I'm sorry you are a "victim" too. Know that I'm here if you want to email me. It's almost impossible to find a support system until you find a stranger that finally can relate to you. I'm that stranger. btw, I literally lost ALL MY FRIENDS in the 7 years I've been sick and it hurts deeply.
Thanks man! I too never knew I was bitten by a tick. I'm sorry to hear that you are going through this nightmare too...I suspect I had it for many years and it stayed dormant as I really got sick when I had a really stressful time in my life and then bam, it all hit me overnight. PM me if you want to connect on FB. praying for you buddy!
I'm sorry Emily. I know exactly how you feel. I experienced the loss of friends as well, but I have learned that the ones who stick around are the true friends, even if it's only one or two or even if it's a new friend you make because of Lyme. I hope and pray for your recovery. god bless :)
Mia, I'm sorry for taking so long getting back to the comments on my videos! I've been pretty sick and it's been hard to keep up. Thank you for your kind compliments. I had hoped this video would touch people. Please go ahead if you already haven't and share the video wherever you wish. I'd love to check out your blog! Wishing you the best and healing. god bless :)
Sorry I have been off the radar for a while! I'm hanging in there but it's been a bumpy ride since my last video update. I am going to be doing a video soon on my latest treatment; methylation support. I believe this is crucial for anyone with chronic illness to address. Thank you for your concern!
The last part of this video had me bawling. This video couldn't have been better put. Having a hard time finding the words I wanted to say, but basically rock on and you truly captured how I have been feeling lately.
I have Rheumatoid Arthritis so we have similar pain issues and that sucks the life out of us. I lost interest in things for so long that I forgot what I was jazzed about in life. I'm not always depressed but it has taken years to learn how to keep my chin up an not let on with friends because I did lose a lot of buddies through the years and I realized why. I love what you have to say and I respect you for doing this video.
This is very true for those of us with an "unknown" chronic illness. I have an autoimmune disease, Mixed Connective Tissue Disease (similar to Lupus). Thank you for making this video!
@22anamae makes me feel good to have posted this video reading your words. The struggle might be invisible, but it is there none the less. Don't feel alone, there's people all over dealing with these issues and you're not alone ! Best luck to you:)
Thanks! Sorry it's taken me so long to reply... I was diagnosed using the western blot through IgeneX labs in California. I would recommend that test as it seems to be the most accurate test available. I am pretty much on a paleo diet due to severe leaky-gut and food allergy issues. Would love to go on all raw, which I plan to once I get me gut situation squared away, I just don't have the enzymes to digest the raw foods right now. Best of luck to you!
Someone on the same path as me. Was a high raw\fruitarian, but leaky gut/food allergies/ic means i cant. Very frustrating, as i have learnt that natural hygeine/raw foodism is the only real chance we give our bodies to heal. Nb have you looked into water fasting, and also digestive enzymes to take with all your food? Will now look at your otber videos with great interest to see what you have explored the last three years. God bless.
hi I just found you. my son has Lyme's and was bitten with the tick bursting into his head a few years ago now, he's 12 now and your face reminds me of what this has done to him. I so feel for him struggling with cognitive issues and he's clearly struggling. my father has Lyme's too and rheumatoid arthritis, I also have severe rheumatoid arthritis and have recently developed rheumatoid lung interstitial lung disease. I feel so worried that I'm not able to get him all the help he needs because I'm dying with it. sorry to be morbid but I'm sure as a chronic illness sufferer you understand. much love hun i hope you are getting the help and support you need x
It is the same with FMS, ME/CFS, etc as it is with Lyme. I have a gamut of diagnosis, and no one who understands, except those who have them and those who go through this with me like my mom & husband. And, they too don't really understand. They often say you're just creating Drama, wanting Pity, sympathy, compassion, etc. It's not just Lyme patients who suffer what all you are saying, I do on a "daily basis". My cousin has Lyme, we have found that all invisible illnesses are treated this way.
I am one of those people who is able to get out and function but if it were up to me I would cloister myself away and sleep all day. I am currently (as always out of desperation) on day 13 of a raw milk diet that supposedly cured a woman with Lyme. So far no changes. Trouble is, and I know you can relate, that you can always tell when you are chasing yur tail. In other words, when another attempt at a cure is not going to work. I feel this is the case again but I will continue with the diet.
I have a chronic condition and you described my life so well. Lost friends because noone understands, docters dont take it seriously in the mean time i keep losing my jobs, cantdate because of it and am in so much discomfort and pain worried or my future...
Hi. I am living with an autoimmune disease called Hashimoto's. It's rare but it's a chronic illness that I live with for the rest of my life. No one seems to understand. Doctors don't take me seriously and offer very little treatment options and hope. Alternative medicine is not an option on my budget. I TOTALLY UNDERSTAND.
Damn man. You almost got me crying. Then again I almost always feel like crying because of this demonic illness. Everything you said applies to me as I am sure it applies to many. Like you my head is heavy, numb, full of cotton, underwater, etc. I've tried to tell people that it feels like when you have a fever and are delirious because of it. Or, that it feels like you are concussed 24/7/365. Of course we both know that NO description of this is apt. Cont.
You have to become your own best healthcare advocate. For all of you with lyme symptoms get tested through Igenix...they also have a financial assistance program for those that can't afford testing. It's expensive about $700. Never give up. Keep fighting.
There is a lot of debate if Lyme is 'curable' or if it simply goes into a state of remission. Like the chickenpox virus, you will forever have it in your body but it goes dormant. I know people who have regained 100% functionality or more after treating for Lyme and the other tick-born infections that come with it. There are so many components beyond Lyme that make the who illness very confusing and convoluted, but yes, people do get better and reagin health and I intend to as well :) Thanks :)
hello Will ! thank you for your inspiring video! Greetings from Romania, we also have Lyme here and each year the situation is worsening and it has been reached epidemic proportions. My advice is to go raw vegan and also to use coffee enemas (see Gerson Therapy). I'm dealing with lyme for nine months now and I'm feeling 80-85% better.
Hi Tianna, sorry I have been so behind on youtube... I will look you up on FB and add you and we can chat. Looking forward to hearing your story. god bless
This is something I have never thought of.... all the hats we wear! And people wonder why I'm busy! :) Thank you so much, and if you don't mind I would like to share on gmail ! Hope things are going better for you.
@rthecrook you're welcome. Glad I could make things easier for you. I'm doing ok, still making it through every day. Hoping to recovery completely as soon as possible. I have plans to do more advocacy work in the future. nice to meet you :)
My brother has Lyme and when I try to offer support, he attacks me and tells me I piss him off. I pissed him off before he ever got sick, because he's an abusive person. How can you offer support to someone who responds to every effort to have some kind of pleasant exchange, with abuse? Personalizing things that aren't personal, and turning them into a reason to go into the attack mode? He was like this before he got sick.
I hope you have found some answers since you last posted this. I am still on medical leave from college and it has been a long journey. PM me if you want and maybe we can talk about how things are going for you and I can fill you in on what I've been doing.
oh man I hope we can talk soon lyme is still on the board would love to share our stories and see what steps I should do regarding lymel...hopefully chat soon take care.....
That is so lovely that you trusted Jesus Christ to save you from your sins. The Bible says we are all sinners that the only way to Heaven is through Jesus Christ. I am so happy that you are saved and that you have put your trust in the Lord Jesus Christ. I hope you have a King James Bible because the other Bible versions are all false. Jesus can cure lyme disease! Amen!
Hey Kat, I feel so bad for taking this long to reply...I'm sorry to hear about you going through this as well. You know how difficult it truly is. PM me and we can hook up on FB and chat. I watch your videos on your channel and it's refreshing to see positivity! We need more of it! hope to hear from you :)
I am now under antibioticos tratamiento my Lymes are kill me i am unabeleblo to work like before the artheates pain an loss the memmory es terrible i am fron Ecuador i fill bad fore you because jou are too young
I'm so impressed with this video. I was riveted all the way through. I'm 42 and have fibromyalgia. You expressed so eloquently what chronic illness patients go through on many levels. All of the hats that we do indeed wear. I'm in the process of building a blog and would love to post your video on it with your permission. Let me know, please - here or at womaninterrupted@gmail.com Thanks so much for taking the time to create this video and share it with the world!
You did an amazing job on this video. The only thing that's missing is realizing that Jesus Christ can heal your body. But you have to believe that Jesus Christ died on the cross for your sins, was buried, and rose from the dead. He can forgive your sins. Call on him to save you. Then you can pray and ask him to heal your body..if it's in his will to do so. Tell Jesus right now that you believe he is GOD and that you trust his shed blood on the cross to save you from your sins. Get saved.
Hey, thank you so much. Absolutely, I put all of my faith in The Lord for my healing. He is using this unfortunate illness in my life to bring good to others and to myself in the end I believe. Thank you!
amen brother. you have such wisdom. keep thinking and processing and discovering the intricacies of the path you are on. i am twice your age, been sick probably close to your years and take great heart in what you are saying. Be well, Hazel
Thank you for the familiar feelings and truth. I hope and pray that my family and friends take the time to watch and listen to you video, and that they will finally understand and show compassion. God bless you!
Beautifully done! I know how difficult it is to keep your head together while writing a blog or recording a video, and you nailed it. Thank you for being a great advocate!
I applaud you for your videos and for taking the words out of my mouth. This is definetly not a one size fits all disease. Those of us with the neuro version have been dealt an insidiously bad hand. I wish you well and speed on your way to recovering from this nightmare. Keep the videos coming when you are able or so compelled and thatnk you for making us feel a little less alone and crazy.
Amen! Yes, thank you!!!
Thank you, you describe perfectly what's going on with us, our family and friends.
Great job with this video! I have an autoimmune disease too and am trying to spread awareness as well. Our illnesses don't get as much awareness as they should. thanks for spreading awareness for chronic illnesses!!
Thank you so much for this video. I don't have Lyme but I have an as yet undiagnosed mystery stomach/nervous system illness and this video just really sums up my emotional and physical state in 15 minutes. I'm going to show my friends and family this video because it really just sums up exactly how I feel every day. Thank you, thank you, thank you so much!
Thank you! I am sorry and sympathize with you. I pray that your healing comes. God bless!
I don't have lyme but I do have an autoimmune disease and this was such a wonderful video to help explain what a chronically ill person goes through and how they feel, especially how people assume you're fine when you go out when really you feel terrible. I've had a hard time explaining this to people in my life but I sent some of them this and I think it'll help them understand a little better. Thank you so much and I hope you're doing well!
I suffer with Lyme, and have for many years. I always have a tough time explaining to people what it's like to live with a chronic illness, and whenever I try, I come away feeling I didn't really give them the whole picture.
What makes it worse is that I've had Lyme for so long that - except for my family - no one that I currently know or interact with knew me before I started getting sick.
You did a great job explaining things here, and I appreciate it. I plan on showing my friends this video
Your vid really touched me, everything you said was soooo true. You raised some good points about how others see a lyme patient, and how we see ourselves. It can be a scary and lonely disease sometimes, glad you have some family support. Thanks for sharing, your talk made me feel less alone. (( healing hugs))
thank you! I think people need to hear this. I am glad that I was able to put something together to help others. you're in my prayers and I hope that you get the financial resources you need for your treatments. god bless
THANK YOU!
Hello! Thank you for your kind comments :) nice to meet you from Romania! I have many friends in Europe and a good friend in Slovenia who is dealing with Lyme and other issues and there is so little knowledge by the doctors in that area about Lyme and co-infections. I hope you are fully healed now! god bless
This really touches me because it is exactly what i am going through. I would love to hear about treatments you have been doing or anything. I have Chronic Lyme and its touch daily but you have to stay positive. God Bless!
As a fellow chronic/invisible illness sufferer, I thank you for telling it like it is.
Yes! I agree. I know of Cutler's work and it is very good. I am currently focusing on Methylation support with Dr. Amy Yasko. Both Cutler and Yasko are on a similar wavelength. Getting methylation going and working on mutated SNP's can get the body to detox itself and move metals out leading to healing. Thanks for the reminder, I need to buy his book!! :)
Dude, you are such a freaking Genius!
Your first video I watched was when I was finally diagnosed in August 2012, I shared it with my whole family because I felt that it so well described what I had lived with for 6 years being misdiagnosed.
I had a horrible day today, just terrible! but tonight I went through some Old picture albums of when I was a kid (25 now) and I almost started crying b/c I was reminded of who I was before 6 years ago. Perfect video! Perfect Timing!
Thanks man, all I got
MrLymeBrain how are you doing ?
Right there with you. I wish you all the best. Don't EVER give up!
Word. Every part of it. You made me want to cry, hearing someone else say that which is not known, and how alone we each are with it.
So sorry to hear about the undetected lyme for so long. We can and will get better. You didn't make it 20 years to not get out of this! you're in my prayers, good luck my friend!
Great video LymeGuy1. You are so articulated about how Chronic Lyme changes who you are. I love that you explained how many roles that we have to take on. I have finally been making great progress this past summer and I'm still improving. Interesting thing I'm finding is that the people I have met while I have been sick have only known me as being sick and now that I'm improving they are telling me that they are shocked how different I am. Really interesting. Good luck with your treatment.
Thank you :) I will!
Thank you, from the bottom of my heart, for taking the words right out of my mouth. Every word you said is exactly how I feel about living with a chronic neuro muscular disease called CRPS. I could never have described things as well as you just did. I would love to know how you are doing now. I pray you have gotten much better and are out there living life, yet fear you have slipped further down this dark hole, which is chronic illness. Much love to you.
Exactly! Thank you :)
Thank you! Yes, i feel cheated in a way that my young years are being stolen away by an awful illness, but I have hope and faith that what will come after will be more rewarding than what I would have achieved on my own had I never fell ill. Hope you are doing well. god bless
I tip my hat to you. Thank you for speaking for us all.
I suffer from many chronic diseases so I feel your pain. I have to say thank you for making this my six year old has chronic Lyme disease as well as aspergers,ADHD. He is always sick. I posted you on my Facebook so maybe people will open up to this invisible disease its terrible. You made me cry tears for and I will always remember you throughout my life. When my son flares bad I will know he is not alone. I will pray daily for you as I do for him.
you expressed my life, this touched my heart....every word you said, I understood. I cried thru most of it. thank you and keep fighting
Thank you :)
Bless you for this. I am a 59 year old woman who had a tick borne illness 17 years ago....did not test positive then and still does not consistently but had an acute illness and actually had the tick bite and classic rash...still fought to be diagnosed and treated. I now have fibromyalgia and Grave's Disease and I KNOW there is a link! ALso both of my now grown children had CFIDS in school years and we are all to familiar with the challenges of invisible illness. Best wishes to you and keep up the fight....I am sharing this w others!! (btw,,,my health has never recovered and I am chronically ill and KNOW of what you say... just going to the grocery can be the one goal of the day , on a good day,,,,then I crash as you say.) I am so sorry this happened to you at such a young age!!
You are wise beyond your years.
Good video.
thank you... as someone else commented, you absolutely hit the nail on the head with this video. i have been called ' a hypochondriac, malingering, lazy (after 17 years of working as an RN), attention seeking, crazy, somehow responsible for being ill, burden, unwilling to 'get better' even though no one considers me ill (?), a disappointment, etc etc etc... from not only multiple doctors, but 'especially' from family...
firstly i really don't understand the whole 'you dont look sick' or 'invisible illness' comments coming from people i *live with* who have SEEN the inability to get out of bed, the occasional passing out, the way my heart races and goes into different arrhythmias (i have a small HR/BP monitor) when i am just sitting there, the vomiting, the curled up in a ball crying type of headaches, the constant 'IBS', the super high heart rates and blood pressures etc... because when all of that is going on, how can they say it is 'invisible', or that i dont look sick?
even when multiple doctors from different specialties bring them in to try to explain it to my parents, they will just sit and nod their heads as if they are truly listening, then continue to behave as before, often times totally twisting the words of the Dr. to say what they wanted to have been said... i *seriously* can not even wrap my head around such denial, and ignorant behavior. i *know* that no one will be there to support me, which is bad enough, but they actually attack me over it. so, fine, dont care enough to be there, i am used to having to pull myself out of awful situations alone... but for damn sake, at least leave me alone about it and stop antagonizing me!
okay, the message got a bit long, and out of emotional control... i apologize. but this really is the *truth* so many have to live...
lol oh god hunny I so know how you feel though, I've literally been writing a book, because it's all sending my mind reeling. the one time we seriously need help, all the thousands of times in life we've helped others...and those who are meant to love us question everything we are going through! much love to you x
It is so sad that we have to 'Look' sick in order for people to understand this. I'm so sorry you had this experience. I too have had to deal with this and I know how hard it can be. I wish you all the best in finding healing/cure for your condition. god bless you :)
this makes me so glad that I made this video. Truly, the best thing you can do for someone you really care about is to just be there for them no matter what. Most of all we want is someone who will listen and stick by us and not leave when the going gets tough. I applaud you for learning about this for this person!
Thank you for making this! I have been diagnosed for 4 years and have felt alone.
Thank you so much for doing this video. I have shared this on my fb page and group. Be very proud of who you are. I have Fibromyalgia and I live in Ireland , people here have not even heard of fibro let alone a chronic illness. you say it all in this video. God bless you
@maddis1987 I'm sorry to hear about the person with lyme you are close to. On behalf of them, I commend you for taking the time to learn about this. Thank You! My best advice to you is to simply ask that person how they are doing as often as you see them. When they are feeling bad, sympathize with them. Sometimes we just want someone to tell us "you know... that stinks... I'm sorry... I can only imagine how you must feel." It's ok if you don't know what to do to help. Just being there is huge!
It's the old "you don't get Lyme til you get Lyme" deal. I have never wished illness on anyone in my life but out of desperation I sometime wish people could just spend 5 minutes inside my brain and feel the heaviness,anxiety,fatigue,deal with the blurriness and floaters,the migraine headaches and stiff necks,eye pain,depression,dark and disturbing nightmares,and on and on. I've tried it all and I am still sick, 7 years and counting. I am twice your age and my life is lived in fear. Cont.
so true, thanks for posting :)
Oh man, I totally get this. I totally do. Thank you so much for sharing- this is SO me!
While I don't have Lyme disease, or any other chronic physical illness, I can relate to the sentiments in this video. I am a long time sufferer of chronic clinical depression. I think that mental illnesses can be just as serious and some are just as misunderstood. Some people I see on a daily basis would never believe I am depressed, they just think I am tired or something. Some that I have told simply drift away over time as they don't want to be around me.
very well spoken. If I could afford treatment I would be getting well. blessings
wow, thank you, i haven't even finished your video, thank you for the honesty!! (war a battle couldnt put it better) " at least in regards to the avocation of chronically ill people "
You hit the nail on the head there man.
Thank you :) It was out of my own frustration with the lack of recognition that I made this video and I hope it helps others with invisible illnesses. I pray that you are healed! god bless :)
I have Lyme, too, and I really related to this video. I'm sixteen and it's hard when all of my friends are going out doing things and I end up getting left out. Not too many people understand just how truly awful Lyme is (as well as any other chronic disease). It's like people feel uncomfortable and don't know how to respond when you tell them. I hope more people see this video and can sympathize with what we are really going through.
Perfectly put together, well said. Top guy!
YOU ARE SO SO SO RIGHT! I have a horrific nerve disease called r.s.d. or c.r.p.s.
They stand for reflex sympathetic dystrophy or complex regional pain syndrome.
Basically a simple nerve injury turned into this disease as my injured knee created a nueroma or a nerve with many many more nerves that branched out from it. Then they branched to my spine and havoc started. My good cells in my spine mutated and traveled to my brain causing me to live a nonfunctional life with no quality in it. The pain level IS THE HIGHEST THEN EVERY DISEASE OR DISORDER. It surpasses cancer by a 1/3 BUT THE DEVASTATING PART IS THAT THE WHOLE MEDICAL INDUSTRY, LAWYERS AND GOVERMENT DO NOT recognize the severe suffering we endure resulting in many suicides.
I could talk about the horrific symptoms and situations I go through, however this text is for you. I know your heart, feelings, emotions and state of mind. I'm sorry you are a "victim" too. Know that I'm here if you want to email me. It's almost impossible to find a support system until you find a stranger that finally can relate to you. I'm that stranger. btw, I literally lost ALL MY FRIENDS in the 7 years I've been sick and it hurts deeply.
Love this video. Take care & be well.
you're welcome! god bless :)
Thanks man! I too never knew I was bitten by a tick. I'm sorry to hear that you are going through this nightmare too...I suspect I had it for many years and it stayed dormant as I really got sick when I had a really stressful time in my life and then bam, it all hit me overnight. PM me if you want to connect on FB. praying for you buddy!
Enjoyed your video and shared. Thanks from one lyme warrior to another.
I'm sorry Emily. I know exactly how you feel. I experienced the loss of friends as well, but I have learned that the ones who stick around are the true friends, even if it's only one or two or even if it's a new friend you make because of Lyme. I hope and pray for your recovery. god bless :)
Thank you. You spoke my mind, only with more patience that I could. Well done.
Mia, I'm sorry for taking so long getting back to the comments on my videos! I've been pretty sick and it's been hard to keep up. Thank you for your kind compliments. I had hoped this video would touch people. Please go ahead if you already haven't and share the video wherever you wish. I'd love to check out your blog! Wishing you the best and healing. god bless :)
Dude you´re awesome!!! Keep the fight on.
I'm a massive researcher too. I've had to be, but I've also lost so many people out of my life since living the sick role
Sorry I have been off the radar for a while! I'm hanging in there but it's been a bumpy ride since my last video update. I am going to be doing a video soon on my latest treatment; methylation support. I believe this is crucial for anyone with chronic illness to address. Thank you for your concern!
The last part of this video had me bawling. This video couldn't have been better put. Having a hard time finding the words I wanted to say, but basically rock on and you truly captured how I have been feeling lately.
I have Rheumatoid Arthritis so we have similar pain issues and that sucks the life out of us. I lost interest in things for so long that I forgot what I was jazzed about in life. I'm not always depressed but it has taken years to learn how to keep my chin up an not let on with friends because I did lose a lot of buddies through the years and I realized why. I love what you have to say and I respect you for doing this video.
This is very true for those of us with an "unknown" chronic illness. I have an autoimmune disease, Mixed Connective Tissue Disease (similar to Lupus). Thank you for making this video!
@22anamae makes me feel good to have posted this video reading your words. The struggle might be invisible, but it is there none the less. Don't feel alone, there's people all over dealing with these issues and you're not alone ! Best luck to you:)
Thanks! Sorry it's taken me so long to reply... I was diagnosed using the western blot through IgeneX labs in California. I would recommend that test as it seems to be the most accurate test available. I am pretty much on a paleo diet due to severe leaky-gut and food allergy issues. Would love to go on all raw, which I plan to once I get me gut situation squared away, I just don't have the enzymes to digest the raw foods right now. Best of luck to you!
Someone on the same path as me. Was a high raw\fruitarian, but leaky gut/food allergies/ic means i cant. Very frustrating, as i have learnt that natural hygeine/raw foodism is the only real chance we give our bodies to heal. Nb have you looked into water fasting, and also digestive enzymes to take with all your food? Will now look at your otber videos with great interest to see what you have explored the last three years. God bless.
Ok I agree son.
hi I just found you. my son has Lyme's and was bitten with the tick bursting into his head a few years ago now, he's 12 now and your face reminds me of what this has done to him. I so feel for him struggling with cognitive issues and he's clearly struggling. my father has Lyme's too and rheumatoid arthritis, I also have severe rheumatoid arthritis and have recently developed rheumatoid lung interstitial lung disease. I feel so worried that I'm not able to get him all the help he needs because I'm dying with it. sorry to be morbid but I'm sure as a chronic illness sufferer you understand. much love hun i hope you are getting the help and support you need x
It is the same with FMS, ME/CFS, etc as it is with Lyme. I have a gamut of diagnosis, and no one who understands, except those who have them and those who go through this with me like my mom & husband. And, they too don't really understand. They often say you're just creating Drama, wanting Pity, sympathy, compassion, etc. It's not just Lyme patients who suffer what all you are saying, I do on a "daily basis". My cousin has Lyme, we have found that all invisible illnesses are treated this way.
Very well said. This is going to be helpful in sharing with my friends and relatives. Do you have a blog or written transcript? This is so well put.
I am one of those people who is able to get out and function but if it were up to me I would cloister myself away and sleep all day. I am currently (as always out of desperation) on day 13 of a raw milk diet that supposedly cured a woman with Lyme. So far no changes. Trouble is, and I know you can relate, that you can always tell when you are chasing yur tail. In other words, when another attempt at a cure is not going to work. I feel this is the case again but I will continue with the diet.
I have a chronic condition and you described my life so well. Lost friends because noone understands, docters dont take it seriously in the mean time i keep losing my jobs, cantdate because of it and am in so much discomfort and pain worried or my future...
Hi. I am living with an autoimmune disease called Hashimoto's. It's rare but it's a chronic illness that I live with for the rest of my life. No one seems to understand. Doctors don't take me seriously and offer very little treatment options and hope. Alternative medicine is not an option on my budget. I TOTALLY UNDERSTAND.
Damn man. You almost got me crying. Then again I almost always feel like crying because of this demonic illness. Everything you said applies to me as I am sure it applies to many. Like you my head is heavy, numb, full of cotton, underwater, etc. I've tried to tell people that it feels like when you have a fever and are delirious because of it. Or, that it feels like you are concussed 24/7/365. Of course we both know that NO description of this is apt. Cont.
You have to become your own best healthcare advocate. For all of you with lyme symptoms get tested through Igenix...they also have a financial assistance program for those that can't afford testing. It's expensive about $700. Never give up. Keep fighting.
Maybe some of those nifty machines sent to Mars could stop being built and THAT money could go toward Lyme research... Hugs and love.
There is a lot of debate if Lyme is 'curable' or if it simply goes into a state of remission. Like the chickenpox virus, you will forever have it in your body but it goes dormant. I know people who have regained 100% functionality or more after treating for Lyme and the other tick-born infections that come with it. There are so many components beyond Lyme that make the who illness very confusing and convoluted, but yes, people do get better and reagin health and I intend to as well :) Thanks :)
hello Will !
thank you for your inspiring video!
Greetings from Romania, we also have Lyme here and each year the situation is worsening and it has been reached epidemic proportions.
My advice is to go raw vegan and also to use coffee enemas (see Gerson Therapy). I'm dealing with lyme for nine months now and I'm feeling 80-85% better.
Hi Tianna, sorry I have been so behind on youtube... I will look you up on FB and add you and we can chat. Looking forward to hearing your story. god bless
This is something I have never thought of.... all the hats we wear! And people wonder why I'm busy! :) Thank you so much, and if you don't mind I would like to share on gmail ! Hope things are going better for you.
Man hope this guy is okay, didn't see much activity on his channel.
@rthecrook you're welcome. Glad I could make things easier for you. I'm doing ok, still making it through every day. Hoping to recovery completely as soon as possible. I have plans to do more advocacy work in the future. nice to meet you :)
This is so true... how are you doing today?
My brother has Lyme and when I try to offer support, he attacks me and tells me I piss him off. I pissed him off before he ever got sick, because he's an abusive person. How can you offer support to someone who responds to every effort to have some kind of pleasant exchange, with abuse? Personalizing things that aren't personal, and turning them into a reason to go into the attack mode? He was like this before he got sick.
Have you tried the Marshall Protocol?
me to
YOU ARE LOOKING BETTER ..MY GRANDDAUGHTER IS ONE OF TRIPLET ..ALL GIRLS ..AND A BROTHER 17YR.OLD
I hope you have found some answers since you last posted this. I am still on medical leave from college and it has been a long journey. PM me if you want and maybe we can talk about how things are going for you and I can fill you in on what I've been doing.
oh man I hope we can talk soon lyme is still on the board would love to share our stories and see what steps I should do regarding lymel...hopefully chat soon take care.....
I'm going to die from this.
TonTon how have you been doing ?
I've had Epstein Barr Virus. You described me perfectly.
That is so lovely that you trusted Jesus Christ to save you from your sins. The Bible says we are all sinners that the only way to Heaven is through Jesus Christ. I am so happy that you are saved and that you have put your trust in the Lord Jesus Christ. I hope you have a King James Bible because the other Bible versions are all false. Jesus can cure lyme disease! Amen!
how can you test for lyme?
Hey Kat, I feel so bad for taking this long to reply...I'm sorry to hear about you going through this as well. You know how difficult it truly is. PM me and we can hook up on FB and chat. I watch your videos on your channel and it's refreshing to see positivity! We need more of it! hope to hear from you :)
Can chronic illness be depression as well??
SPOONIES! I have Crohn's Disease, BTW.
I am now under antibioticos tratamiento my Lymes are kill me i am unabeleblo to work like before the artheates pain an loss the memmory es terrible i am fron Ecuador i fill bad fore you because jou are too young
inesv20111 how are you doing ?
Please google christine miserandos spoon theory...it helped me.
I'm so impressed with this video. I was riveted all the way through. I'm 42 and have fibromyalgia. You expressed so eloquently what chronic illness patients go through on many levels. All of the hats that we do indeed wear. I'm in the process of building a blog and would love to post your video on it with your permission. Let me know, please - here or at womaninterrupted@gmail.com Thanks so much for taking the time to create this video and share it with the world!
You did an amazing job on this video.
The only thing that's missing is realizing that Jesus Christ can heal your body. But you have to believe that Jesus Christ died on the cross for your sins, was buried, and rose from the dead. He can forgive your sins. Call on him to save you. Then you can pray and ask him to heal your body..if it's in his will to do so.
Tell Jesus right now that you believe he is GOD and that you trust his shed blood on the cross to save you from your sins. Get saved.