Life with lyme disease- my neuroborreliosis story& advice
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- Опубликовано: 29 сен 2024
- I was diagnosed with Lyme disease in 2012, after getting sick nine months earlier and trying to see what was wrong with me. The road to diagnose was slippery, but I got treated with antibiotics right away after being diagnosed. However, the symptoms prevailed and I went for years feeling the symptoms with no doctor willing to retest or retreat me for lyme. After being sent to various doctors so see if I have something else causing the symptoms, I ended up in the hospital in 2020 only to find out I have neuroborreliosis. Why is diagnosing and treating lyme disease so difficult and why are people not getting the help they need? I am sharing my personal experience and views on this very complicated disease in hopes to help others who are struggling with the same problems. I am not a doctor and this video is not intended to give any medical advice, but rather to share my story and bring awareness of the lyme disease.
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• Life with lyme disease...
#lyme #neuroborreliosis
Little update from March 2024! I have found the solution to my chronic Lyme disease through the bee venom therapy! So many people in the bee venom therapy group have gotten totally rid of it after trying everything else that didn't work! We just use regular honey bees that the beekeepers use and sting ourselves 3 times a week. I am not gonna go into details but you find all the information you need for free in the "Healing Lyme with Bee Venom" group on Facebook. Join the group and go under files, and then find the Bee Venom Protocol pdf. If you have any questions you can search in the group, probably your question has been answered already there. Or if you don't find, you can always ask in the group as well. My experience has been super good with it so I really recommend reading through the materials and looking into it. Best part is that it is very cheap and you can do it on your own at your own home, so you are not dependent on doctors who don't believe/know how to help you anyways. Sorry to just throw it out there but just reading about people losing hope- bee venom has brought so many people back to health. I did it for 7 months last year and got totally rid of most symptoms and also the food allergies- I can eat gluten and dairy again without relapsing! I thoughts that some of the symptoms I had were unreversable and that I have to live with them for the rest of my life- long story short they are not and I made almost a full recovery! I am not a doctor and cannot give you medical advice but I can say for myself that bee venom therapy gave me my life back when all that doctors could suggest to me were to start taking antidepressants! I am still continuing the therapy and will make a video about it soon! Until that take care and I am sending you lots of love!
I'm really low right now. Thank you so much for trying to help everyone.
So great to hear ur doing better 😝
I think I’ll have to look into that too 🙋♂️
Best wishes from Germany 🇩🇪
I stepped on lawn jackets a couple times, for stung a few times. Hurt like heck, but I noticed my fibro pain decreased , so I did it again on purpose a month later, same result, so I'm waiting to do it again for chronic Lyme,,
I def believe this works.
Yesss I really believe it can! I noticed the same thing- I was a beekeeper and always felt better at summers! Now I know why!!!I really hope it works for you, cheers!!!@@candygarfield1479
I was just diagnosed / this is most sincere post I have seen yet. I do not know who to listen to. Many doctors think this doesn’t exist . Then- other doctors all have different treatments. Thank you again
Little update 4 months after the video- my doctors are thinking I might be suffering from neuroinflammation- a condition brought up by my immuune system being overreactive after years of fighting with lyme bacteria- and that overreaction causes inflammation in the brain. It makes sense to me as my symptoms come and go really fast, and I can usually track down what triggered them (usually eating anything gluten/dairy/white sugar, not sleeping properly, mental stress or doing too much physical work). I dont react to my symptoms mentally anymore (aka dont freak out or allow it to make me sad/frustrated/angry) and I have realized that if I am feeling the symptoms (extreme fatigue, dizziness, numbness of hands/fingers, brain fog), then instead of just resting and sleeping it off, I go to walk or move, to get my blood running, and that speeds up the recovey and helps me to feel better much quicker. I avoid things that cause inflammation and I am feeling quite well right now! Wishing you all the best, dont give up!!! There are many poeple who have overcome lyme and I am sure that it is treatable, you just gotta keep fighting for your health!!! I am right here with you& sending you lots of love!!!
Cat's claw and October Park together can help a lot also try Japanese knotweed you can do oregano oil and clove not sure about black walnut I have it but haven't tried it yet turmeric tablet can keep down the inflammation some great doctors to watch on RUclips Lyme specialist dr. Horowitz Lyme specialist dr. Marty Ross and doctor bill rawls
@@jessehall7810 Thank you so much! Taking cats claw and turmeric but havent tried Japanese knotweed, will try to find it as I have had few people tell me this already :)
So You are now what my best days are..😌. I also do as You do.. go for a walk and such.. But Im incredible out of energy right now so it can get worse when trying to get better..🥴. You bring hope in me.. has’nt been hope for like 5 years now. But I’m here yet.. so lets keep on forward. Thank You for sharing Your tough journey❣️
👋🏼😌🇸🇪
I'm glad you're feeling a little bit better but sometimes the inflammation can't be cleared because of myotoxins and biotoxins
You might want to look up binders there's cholesterol medication you might have to start slow maybe that will help you could also look up Richie shoemakers protocol because he talks about lyme biotoxins.
I was also wondering what herbs you took and rotated for Lyme disease I have a lot of neurological issues and I'm reacting to everything and have all kinds of inflammation in my brain and my nerves and no one's helping me. My symptoms started happening neurologically after the backs vax a year ago
Thank you. I'm right there with you...in all your pain, frustration, etc. I contracted Lyme in the 90s. Wasn't believed.... So sad...
I seriously feel like these people should have a lawsuit. I don’t understand how out modern doctors do not listen and would prefer to do high tech and costly exams rather than listen to the patient.
As someone who was chronically ill himself, I only can encourage googling your symptoms. You will come to things like lyme disease, anaplasmosis, barbesiosis, chlamydia, erlichiosis, aspergilliosis and mycotoxicosis, toxicoses with other microbes, fusobacteria, syphillis, heavy metals and psychological stress.
All those things can come with a diffuse set of symptoms most doctors have trouble with as first of all, there isn't much research on people like us with weird syptoms, and then again, diagnosing something like asergilliosis or chlamydia infection is extremely hard even if your doctor does suspect those causes. And then there are different types of toxicoses which aren't even recognized as diseases. And of course, all the syptoms and life limitations will stress you out which then can manifest in psychological and neurological symptoms. Please don't fall into depression. Try to keep seeing the beautiful things in life. Ans just like she already mentioned: find someone who can help you with the source/course of your problems.
Really appreciate you writing this thoughful comment!!! I think a lot of people (including me 10 years ago) believe in this myth that if you get sick, you go to doctor, and they will give you a pill and you will be fine! So many disease that we have such a limited understanding of and so many illnesses that are extremely hard to get rid of! So we must do anything that we can, even if that means doing our own research to help ourselves. Thank you for watching and leaving this comment here, and all the best to you!
Thank you for sharing your story, the grief, and the encouragement.
I also struggle with the recurring fatigue, charlie horses, dizziness, tremors, numbness - mostly upper body, fingers, arms, and shoulders. Significant muscle loss. Cognitive- disorientation, comprehension, memory loss.
I was diagnosed several years ago with lymes.
A few months back, I contracted covid and was retested for lymes. The doctor said that the covid activated the Lymes. I told him that the Lymes was active, therefore immunity being compromised left body vulnerable.
With the aid of vitamins, acceptance, prayer, rest, and moderation, I'm in pretty good shape for the shape I'm in. 🙂
Thank you for starting the conversation. Although the video was released a year ago, it helped me to open up.
Thank you!
God bless you Sandra!
Thank you so much for sharing your story Sandra! I am sorry to hear you have such severe symptoms and that lyme was activated again. It is hard to know it can get activated any time but I am glad you have found ways to help yourself! I loved how you brought out acceptance as part of the solution, I have also found that accepting that you have the disease instead of freaking out about a flareup is much better way to go and leads to solutions and not to self pity! I hope you will beat the lyme for good one day and get back to a healthy life! All the best to you and keep on fighting for your health!
@Viive-Kai Rebane
Very compassionate and kind of you, Viive-Kau Rabane!
Thanks for your words of encouragement.
Yes! Acceptance is key to all my problems today.
Stay well
Stay blessed
@@rdallas81
Thank you.
LORD bless you as well!
@@sandrapetrovich8894 Thank you sister!
I’m so lucky my Dr. comes up with things to try and I do my own research and things to try. My Dr. is open to having me try things and see what happens. If it works stay with it. Most of all my Dr. understands and is a God send.
I would like to add to stay out of hot tubs. I went in one 17 years ago and was completely paralyzed by evening. That’s when I went for Lyme test and they said I didn’t have it. Moved to another state with naturopaths and found out I’d had it for a very long time. I haven’t seen it it in my blood for a couple years and now after jaw surgery, my head got full of it again and jaw. Trying to use laser and castor oil now on jaw. I’ve had this over35 years . I am so tired.
Thank you young lady, it helps in coping with this horrible disease, hearing others stories, it is a life long struggle to feel like your not dying. It is a living nightmare
I am sorry to hear you have to live with it as well! Keep on fighting and one day you will find something that will make you feel normal again!!! I wish you all the best!!!!
Is this why the few people that were talking to me quit.
I don't expect any one to cure me, it helps to share this wicked feeling with someone. They are not immune from this.
You explained this all so well. I could not have explained it so clearly. You gave me new ways of communicating this experience to others. Thank you.
Glad it was helpful, thank you for watching and all the best to you on your journey!!! You got this!!!
Thank you for your story! I'm really struggling and you've definitely given many people some reassurance. I had my first lyme test, it was shown as nonreactive. I was bit a child and now I'm 30 years old so I'm trying to advocate for myself and my health. Only now has it become an issue that effects me day to day, swollen knees and eye infections. If it wasn't for morgellons I wouldn't of googled n found it was a co-infection from lyme disease
Much support and care to you from Canada!
Lyme has hit my family here in Nova Scotia and it is terrible. My daughter and her two sons have been attacked by little silent monster. My daughter had to take action and how she did this was by creating her own company Atlantick tick spray which has helped a lot of pet owners and there families. Having watched this video make one wonder how our doctors sometimes do not understand or take this disease serious. To this day I see children running around and rolling around on the grass and later one become sick and wonders why. Education is the key. Learn to respect this little creature that can change your life for ever.
I have chronic lymes! Neurological problems bad. Unable to drive. Have had any and every symptom. I’ve been doing colonics with Ozone! Taking cell core biosciences parasite detox. RUclips it!! All about balancing your gut! Eating fresh veggies and meat! NO sugar! Have to starve the parasites out! Liquid b-12 and probiotics! I’m praying for you!! I’m also a work in progress but I’m getting better!! Hope this information maybe able to help you!
With my decades of expertise, I am positive that I can help you get better. If you would like help for free, please send me an email. My email address is in the "About" section of my RUclips profile.
Your story sounds similar to what I have been going through since 2020. My Infectious Disease doctor will do the tests but waiting for him to say he is not going to order more because the neurologist I see said all you need is antibiotic so you should be fine.
I have completed 2 rounds of 30 days of antibiotics. I go back to the infectious disease next week. So we shall see what he says.
Thank you so much! ❤❤❤. I haven’t finished this video yet but what you just said about not remembering what it feels like to feel normal! I so much relate to that SOOOO MUCH!! I hope I get to experience it again !
I finally after almost 30 years of chronic fatigue and getting sick all the time which started when I was around 11 years old, and then more and more and more unexplained symptoms coming up over all these years…. Have been diagnosed. I suspected for five years it was Lyme disease, but even though I had positive antibodies on the crappy tests, I was told they were a false positives, even though I had gone in there specifically requesting Lyme testing! Finally, I decided to try functional medicine at the Cleveland Clinic and they found it along with a bunch of coinfections. But they can’t really treat it there because their hands are tied, both of the research hospitals in my state, Cleveland Clinic and Osu say they don’t diagnose or treat Lyme in their infectious disease depts!
And I’m finally starting treatment with a LLDR , but I think the treatment is probably a journey of years. But it’s just so frustrating how many people have made me feel crazy or lazy for such a long time! There was an entire year that I was completely bedridden, and every doctor I saw blew off everything has being in my head. One of them actually told me that the severe pitting edema I was getting was caused by “gravity”! 😂😂
I don’t know how some of these people can call themselves doctors! And it’s also the medical schools and the government agencies that keep doctors from really learning about this disease and how deep and difficult to treat it is. That part is completely unacceptable because they know! They still claim their standard testing is all that is needed even though there are so many new strains out now and the test is basically 50% accurate, and they claim that all you need is a short round of antibiotics, which is probably true if you just got bitten… but then the NIH has articles about it building biofilm that antibiotics can’t get to after it travels to different organs and sets up camp. So they freaking know!
I don’t know if it’s so politicized because there’s a lot of evidence that the military was messing around with testing diseases and ticks outside of Lyme Connecticut, or if it’s because they don’t want to admit it exists until there’s an actual vaccine. two strains were removed from the standard testing because they are patented for a vaccine that was quickly taken off the market because it had horrible effects on people. It’s just shady.
Thank you so much for your story ❤ it helps me really not to give up ❤❤
Thank you for sharing your story. I have been going through the same situation. It is obvious to me that you are a very strong young woman. I am sorry that you lost your dreams that you have worked so hard for over the years. This video has helped because you are so knowledgeable and explain it so well. I wish you could identify the Specialty of the Doctor that is helping you. It amazed me that you stated that the your system is fighting so hard to defeat the Lyme disease you are just worn out. That's what I feel too. For various reasons similar but different. I pray for you that you will find the answers that you need. Even though I am continuing to pursue the medical issues, I have recently gone back to my religious roots and it has begun to heal my soul. I listen to religious chanting and the beautiful healing music. If anything it lifts my spirits if nothing else, for now. Thank you for your sharing. Take care...
Thank you SO much for your insight. The "dead battery" is such a great analogy!
Thank you for watching and I am glad you found it useful! The dead battery idea has helped me a lot in a sense that I dont fool myself that it will just go away with resting, and I actually have to do something to "charge the battery"!
Thank you so much for your insight. The dead battery is such a great analogy !
Very nice job.
Thank you! Cheers!
Sending prayers and lots of love, thank you so much for sharing!
Carnivore help me soooo much, with my chronic lyme..😊, and Dipsacus sylvestris- this herb took my bacteria out, i mean every time i take this herb, i feel all the symptoms 10x worse, but then always come the relief..it is amazing herb, so i think it is not dangerous, to "heal" yourself, some doctors just don't know, and we only have one life..!And when they say it is in your head-yes there athe brain that doesnt work properly.
Have had many tick bites but no rash. First symptoms in 2012. Went to my doctor several times for fatigue. Did a selftest for Borrelia in 2018 and it was positive. I then got a proper test at the doctor which also was positive with IgM antibodies. They said I didn't have any infection and that the test results were unspecific. No follow up. I am worse now with infection in my body somewhere. The ESR levels are in the 50's with high WBC so something is going on. My brain has been fogged up since 2012 but the symptoms are much stronger this time. I am waiting for an appointment with a neurologist and hopefully they will do the spinal test. F*** this.
F*** this. Very well said. Sad to hear your story and how doctors just totally ignore the symptoms if the test doesnt show it 100%. I hope you had a better appointment with the neurologist and got the help you need!!! Dont let them keep ignoring your illness!!! Wishing you a quick healing and that the brain fog will stay in the past!!!
We won't let you die, babz. My brother can help you.
The problem with our cure for lyme is that it would kill or harm most people. Are you Alcoholic? We are currently adjusting treatments.
My brother was scheduled to die earlier this year, but he's a supergenius. I'm from a supergenius family. My sister speaks three languages fluently and was employed by the military. I graduated top in my class at genius school when I was a child.
Pulse Dose antibiotics. Polluted blood from dead spirochetes can kill you.
It's a balancing act.
Stop crying. We will save you from the graveyard!
Thank you for sharing 🙏.
Thanks for listening :)
There is a specific test to see the bacteria inside of your body. i have just posted a video ( DW programme that investigates about Lyme )
Could you be more specific about this text....TIA wishing you healing & strength
I use a 30kHz pulsed DC zapper (as used by Karen Allen - actress) powered by a 9v battery (7minutes on, 20 minutes off, three times in succession, once a day) to suppress Lyme.
Thank you! Good luck!
Thank you too! Cheers from Estonia!
Probably,if the antibiotics that are prescribed for Lyme treatment would contain clavulanic acid( like it is the case of amoxicillin+ clavulanic acud formula to treat other bacteria diseases,for instance) could help disolve biofilms of Lyme bacteria?
Have you read Dr Rawls book and you tube videos?
How about teasle tincture? Best of luck ❤
I’m listening while Brady went to everything that you went through and from 2008 to 2015 I mean I was I didn’t care if I died that’s how bad it was I’m gonna write all the symptoms that I had
All of this sounds very familiar,
Thats the sad part, thousands and thousands telling about their similar experiences but nothing in the treatment really changing... but also the good part, that you are not alone on this fight and we know how you feel! Wishing you all the best!
My brother wants to speak with you. How can he contact you?
im still dealing with long-covid and it feels like a very similar issue, ppl r getting weird long symptoms and dont know how to heal it, its a mystery
What symptoms did you have?
Ive been suffering since 2009. My right hand swells 4 times the normal size with immense pain i just want to die. Who is the dr who helped you? Ive spent all my life savings trying to get well.
Hi! So sorry to hear about your pain! Hang on there, I believe there is cure! What finally ended up working for me was bee venom therapy, I found a book about it, read it and joined the facebook group about it! You can join also so see what people are saying about it! So many people in the bee venom therapy group have gotten totally rid of lyme after trying everything else that didn't work! All you need is an EpiPen and regular honey bees that the beekeepers use and sting yourself 3 times a week! I am not gonna go into details but you find all the information you need in the "Healing Lyme with Bee Venom" group on Facebook! Join the group and go under files, and then find the Bee Venom Protocol pdf! If you have any questions you can search in the group, probably your question has been answered already there! Or if you don't find, you can always ask in the group as well! My experience has been super good with it so I really recommend reading through the materials and looking into it! Best part is that it is very cheap and you can do it on your own, so you are not dependent on doctors who don't even believe/know how to help you anyways! Best of luck to you and I hope you find the solution as well! Big hug from Estonia!
what are your symptoms
hey have u tried fasting to help immunity system?
Have u taken ANY vaccines prior to getting sick with lyme?
Just the regular ones they do when we are kids!
The only reason I know about you is that supergeniuses don't want you to die.
Thank you for your video!! My daughter has been struggling for several years and is being retested for Lyme using a more comprehensive test. We are going to try alternative magnet therapy with Dr Tony Smith in Idaho. If treatment works, I will try to remember to post.
Thank you for sharing Suzi! How is your daughter doing? All the best to you and your family!
would you rather know or not to know in end.. like just switch off.. well, that is finnish system.. no bs. like britts or americans..
I definitely would know, hard to beat an enemy if you dont know who it is! Getting the diagnose was a huge relief as I at least knew what I am battling against now.
@@ViiveKaiRebane Yes, that i did figured out
you stepped in what? :[) LoL'''''''''''
I have active lyme for years now. And treatment did not work, did it twice. What worked was deciding lyme does not define me, i define lyme. I work with my mental health and my body, eat well and fresh, have my vitamins balanced, sleep as lot i need. Gluten, milk, sugar and caffeine is mostly out of my diet. I have active lifestyle, move a lot outside. Do only the things that i love. I do sauna and winterswimming for positive stress. Using essential oils do support me both physically and mentally. Having massage once a month. Being balanced in my body and soul is the only way for me do have a control over diseases.
I host a party for lyme in my body the way it will be passive and can't dictate over me. Haven't had numbness for about 3-4 years for now. ☺️ It's a great success. 🥰
Thanks for sharing! I am happy you have been able to keep the lyme under control! Hopefully there will be a better and more effective cure soon, so that people dont have to figure it out on their own and keep it under control, but can easily get rid of it once and for all! Your methods seem healthy and would probably benefit everyone to have healthier lives :)
You're lucky you can do all those "active" things - a lot of lyme patients cannot - including me.
It’s because it’s a bio weapon.
@@spookshow6999 hello is there more to this bio weapon theory? I have a feeling it maybe real. I'm looking into it and have studied microbiology. Pls respond. I have undiagnosed Lyme disease like symptoms and am going to my family doctor tomorrow to beg him to get a test but he's very dismissive. I've been suffering the symptoms for a few years and realized recently, it may be Lyme disease. Thank you in advance
Orthopedic Dr. May
Listening to you has helped me so much. I feel I am not alone in my fight to beat this horrible disease.
Sending you love and healing prayers.
Warms my heart to hear this!!! You are not alone, thousands fighting the same battle!!! I hope you will find the solution that works for you!! All the best from Estonia!
I was trying to hold back my tears, until you got to the end. When you said, that people around you can't handle it and they didn't sign up for this. That is so true. You don't want those people to feel obligated to take care of you. some people just think I'm being lazy because I'm so tired. I just don't have the energy or the motivation to get up. it's very very lonely. Sometimes I just feel really really alone and I just want to go away, but I can't because I have a young child and I'm going through a custody battle. Not having an attorney, being so tired and having brain fog to try to do paperwork when I know what it is but I just can't put it together. it's just so much. I haven't been officially diagnosed yet. MY PROVIDER PUT IN MY CHART THAT I AM DELUSIONAL AND HAVE DEPRESSION AND ANXIETY. YOU ARE SO RIGHTBELIEVE ME NOW BECAUSE THEY LOOK AT MY CHART AND THEY SAY OH I AGREE WITH HIM WITHOUT EVEN TEXTING ME THAT IS WHAT'S MAKING ME CRAZY!!!. I don't know if it's Lyme disease or Morgellons disease. I don't know what is, but it is definitely something that has changed my life. Thank you for making this video I appreciate you ❤️
Hey Rene! Thank you for your comment! I am so sorry to read about your situation, it gets super complicated when you also have a young child. I know it is almost impossible for people who havent been in this situation to understand what you are going through - but I just want you to know that I believe that you are not lazy or delusional. Dont let them get into your head with those ideas because that is going to take you further from the right treatment that you need. Keep on going because there is light at the end of the tunnel, and I believe in you! Wishing you a fast recovery and all the best to you and your child!
I’ve gone thru the same from Dr.s & people I don’t have 1 friend they don’t care!!! Sad but true it’s a selfish world!! I have it & I pray for death! At 70 yrs. I’m DONE!!! Thanks for sharing ❤
Your not crazy the dr will not diagnose MD or lyme cause Financial reasons and insurance doesn't want to recognize Lyme cause how hard it is to heal cost too much so the Dr doesn't recognize or mis diagnose so your not crazy just dealing with corrupt medical industry's
Hi Rene,
I know exactly what you mean. For me, it's gotten so bad that I walked out of my job a few weeks ago because I couldn't deal with the job stress as it increased my pain levels. They begged me to come back and we worked stuff out (HR had no idea what I was going through and now they know). I also feel very lonely and often wish that I never wake up after falling asleep. I had a very caring girlfriend who I considered to be the love of my life, but I didn't have the energy to put enough effort into the relationship. I did disclose to her in the beginning that I had a chronic mystery illness (wasn't diagnosed with Lyme until halfway into the relationship with her), but she acted as if I was normal and that it was all in my head. She would say things like, "You can't let the illness control you." She decided that the illness was too much for her and said she wanted me to put her before my health. So things didn't work out. Anyway.....now I too feel very very lonely and am struggling one day at a time.
Selfish. I know what your saying. Not one person believes me. Stress only makes it worse. No wonder we are replying on you tube
Hi and thank you for putting this video together. This has been immensely helpful to me on my own battle with Lyme. I have been playing medical pinball for 20+ years. Same story where Drs simply wrote off all of my medical issues. Throughout this time I've had at lease 4-5 medical issues that range from mild to severe (alopecia, spinal swelling, and so on). Finally, I got diagnosed in 2018 and underwent treatment for the entire year. I thought it was cured but it returned since the underlying issue was not addressed; and I was seeing a Medical Dr whose specialty was in Lyme & infectious diseases. So now I am on a journey to find the right treatment for my condition.
I truly love that you mentioned your experience with Drs since it is such a common experience that few ever realize. I agree that Lyme disease is not something that you can simply walk into a Doctor's office and expect to get treated. The patient must take the driver's seat, so to speak, and fight like hell to get proper treatment. I've had to develop the following rules for myself when discussing Lyme disease with Doctors (regardless of specialty):
1. If a doctor gaslights the patient, then they either will not or simply cannot help you; just move on. e.g. When they say, "It's all in your head", or "you look very healthy".
2. If a doctor hears you and says they understand but they don't communicate a clear plan for diagnosis and treatment, then they are communicating that they have no knowledge of your condition and they have little to no interest in putting in effort to learn about it.
3. If a doctor is willing to investigate with you but want to proceed one symptom at a time but they don't articulate big picture plan, then they are empathetic and they also have no knowledge of your condition. Its likely that they can help your symptom (e.g. treating neck pain when you have entire spinal pain) but the patient must continue to seek help for Lyme Disease.
4. If a doctor can articulate an overall plan to address Lyme Disease then you have hit the jackpot! However, the patient must continue to monitor all symptoms that arise for the remainder of your life. When another inexplicable illness arises then you can either return to this Dr or find a new specialist and begin again from rule #1.
I know this sounds like a lot to do but in my case, had I followed this advice 20 years ago then I could have saved myself decades of grief and agony. This is a fair trade, in my opinion.
** Bonus tip for those persons suffering a mysterious illness **
Do yourself a huge favor and start a 'Patient Medical Journal' where you track your symptoms regularly. Enter that into the search box and you will find plenty of options. This is immensely helpful for you to share with Doctors. The more years of journalling the better for you.
Doing my best to spread the word and awareness. Lets all help each other however we can ✊ Jon
Thank you so much for sharing your story, my daughter is going through this, at the moment, she’s getting a lot of GPs saying she’s crazy!!!😢
So sorry to hear about your daughters experience, it is tough when people just cant see and believe what you are feeling, it is very easy to feel lost in that situation! But we see her and there are thousands and thousands of us with the same story! I wish you both all the best and I hope the future will bring the answers you are looking for!
I wrote a long comment and just somehow lost it... However, I understand that your life with a chronic disease is really hard sometimes - your positive attitude is a wonder!
I’m the girl this video was made to reach! I need a Lyme test! I have been sick for 4 years with fatigue and tremors and tingling/numbness. Quit my career. I have also have Bells Palsy like 5 times in my life. I’m 45 and I feel like maybe this is it! I grew up in the woods on many many acres of woodland area in WV, USA! Lots of ticks here! Is it possible I have had it my whole life?!!!!
Hugs! Yes. Global Lyme Alliance can help
Dr Harbour, Lexington VA
I'm suffering from this disease one state over from you--Pennsylvania. The sad part is that the medical industry is crumbling around the same time that Lyme surges. But I agree with the woman who made this video that it's about building the immune system. There will always be insect borne diseases and we need to strengthen our immune systems. My wish is that everyone suffering from Lyme heals from it.
After my refused to believe I had Lyme due to a negative test (western blot). I paid privately for a dualdur darkfield microscopy test and it’s confirmed I have Babesia/ bartonella/ and Lyme. I was diagnosed though the parasite clinic who’ve advised herbal treatments but the option of antibiotics is there but they don’t believe it will do much for me. Would you agree herbal is what I should be doing?
Targeting the biofilm seems to be the key to treating long-term infection. I am currently taking doxycycline with 1000 mg of vitamin C. Has anyone tried this combination? I am thinking of adding pineapple; "The bromelain in pineapple juice can help break down mucus and reduce congestion and inflammation." My thought is that anything that breaks down mucus should help with biofilms.
Thank you for doing your video. It has been very helpful.
Thank you for being here! Feel free to share any stories or experience you have had with lyme! Sending you lots of love!
Thank you!
Thank you!
I’m just starting this nightmare after having the Lyme Rash on my inner thigh…I’ve not been diagnosed with Lyme, yet I do have the rash…I’ve had the Lyme rash for 14 months…I’m making an appt to a Dermatologist on Monday for a biopsy 🤷🏼♀️…I have 95% of the symptoms…
My brain fog, inflammation, swollen knees, etc…Oh yes and over the years I have been bitten many times by a tick…
Oh my God I didn’t see that I could reach you directly from this but if you’re still in the United States my doctor treats it by phone and I promise you he will get you better than any other doctor because from what I’m listening to they keep lying to you you never can get rid of it but you can definitely get it in remission but even in remission you still need treatment and the pots syndrome and getting the Babesia treated with this one medication The name is courtem The. They are lying to you I promise you they are all lying they don’t know nothing if they’re telling you that stuff they’re just stupid
I feel bad for you it’s crazy that they lie to you
I work out hard when I can but not too hard but if I’m not taking that medication for the Babesia I lose my drive and believe me I’ve been through years of treatment and this guy never ever not give me medicine he gives me medicine every time every appointment he goes through everything with you
Yeah she can’t blame the doctors because they’re not doing their job if they’re not gonna do it then why see you did it taking your money and not doing anything just lying to you believe me I learn I don’t take nothing from any doctors leave they try to lie to me I don’t have these problems anymore but when I did I would put them in their places because nobody knows how you feel but you
You, Viive-Kai, are a true GEM! This is one of the best explanations I've ever seen on how to deal with Lyme, and many of the great tips you provided I've had to learn on my own this past month - Thank you! I intend on bookmarking this video and returning to it for reminders and inspiration. I also have late neuro-Lyme with Bartonella diagnosed one month ago. Even as a Registerd Nurse and health coach, I knew very little about Lyme, as it wasn't showing up in my state until recently. Wishing I would have seen your video first thing after diagnosis! I'm from the US and did have to pay for testing out of pocket for Lyme & co-infections (& Co). Since my test I've found information on newer testing and treatments out there, so I hope you don't mind my sharing it here. This is cutting edge technology and sobering news that may either provide help or give false hopes for those with Lyme & Co. Therefore, it is important for everyone to be 'in the know' so that individually we can make informed decisions regarding our future health. While the testing is exciting, the treatment may be a double-edged sword depending on your situation. It could be the best thing ever or the worst. The bottom line, again, is proceeding with caution and learning all you can so you can make an informed decision.
When it comes to testing, what you said @11:33 USED to be true. You said, "There is no test to see if you still have it because the test (how they see Lyme disease) is they are looking for antibodies. So they are not looking for the [disease] because they are so small that it might not be in the [blood] sample that they are taking . . . so what they are doing is looking for antibodies. Your body is starting to fight the Lyme [producing antibodies], so even if Lyme is gone, you still have the antibodies for years, so there is no way you can do the test to see if you [still] have it." Also @12:20 "Your body might be so messed up that you don't even produce antibodies . . . [making it] so difficult to see if you still have it."
Good news! Now there is a test that returns positive or negative results for Lyme borrelia - no guesswork - no false positives - no false negatives. Whether you've got early Lyme or late Lyme, it can detect it. This is because it doesn't test for antibodies. Instead, it looks for something else in the blood (remember, Lyme hides in the tissues and is rarely found in blood). This 'something' is called a Lyme bacteriophage (a.k.a. Phage), and there are labs in Europe and the US that test for it (look up RED laboratories on YT for tutorials by Dr. 'T'). These labs use a process called Phage diagnostics. The founder/discoverer of phage testing is a former director of the department of clinical trials from the Pasteur Institute in Europe, and this gives me confidence that they know what they are doing.
? In a nutshell, for every bacterium, there is also an accompanying virus/parasite called a bacteriophage that lives and multiplies inside of it. The labs check for this 'phage' during testing. When the bacteria becomes full of the multiplying phage virus, it explodes, releasing the phages into the bloodstream and freeing them to invade more host bacteria. Because each phage is specific to one bacteria, if the bacteria are absent, there will be no phages in the blood. Therefore (the way I understand it), on testing, if the borrelia phages are present, you have Lyme, if not you don't, period. This is because if the phages do not find a host, they die after a short time and are removed from the blood. Note: Lyme phages need to hijack the specific DNA inside the Lyme bacteria itself in order to replicate, limiting them to only being able to replicate inside that specific bacteria. This new technology is exciting stuff! But there is one caveat with Phage Therapy itself . . .
Before I mention the caveat, remember that we, as a human race, are still learning as we go. New ideas and applications take time to manifest to people in all reaches of our planet. So while one person may have access to these resources, others may not, unfortunately. And what sounds like a great idea today may end up backfiring tomorrow. So stay open minded, humble and on your guard about the information you ingest, including this comment posted here. Each of us with Lyme & Co (co-infections) are on our own journey to healing, as you've stated, and what I write may become outdated or obsolete in a very short time or it may not be applicable to everyone for whatever reason. Just because something may not be applicable to you or I doesn't mean it can't help someone else we may know. So I urge everyone to continue searching until you find answers and solutions that work for you.
: Phage therapy is making leaps and bounds but is still on the cusp of our full understanding. One method currently being tested to eliminate Lyme is with energy medicine (EM). Energy medicine is used every day already (think radiation, a type of energy used on tumors). This new method, referred to as induced native phage therapy (INPT), uses energy medicine to 'trigger' the phages into going rogue within the bacteria, multiplying greatly and exploding the cell, effectively killing it. Phages do this every day for all bacteria in our entire planet, but they intuitively know to limit the number of bacteria to kill, lest they kill all of the host and they themselves die. Once the Lyme phages go rogue, multiply like crazy and kill all of the bacteria in the body, the next thing to do is look at the blood for evidence of remaining phages a few days post treatment. No phages in blood = no Lyme. But . . .
: As I understand, it is felt by 'some' proponents of phage therapy EM that this treatment may be effective only for a certain group of people. They claim those treated by antibiotics may not receive benefit from this method (but this is not proven as of yet). Here's why. As you stated, when antibiotics are thrown at Lyme, it curls up and forms 'round bodies,' also known as persister cells coated with biofilm. When I was started on Doxycycline one month ago, I discovered a PubMed.gov report showing how 95% of the Lyme is killed, but at the same time persister cells doubled and doxy got rid of ZERO of the persisters in vitro (I send my doctor, whom I LOVE, a copy of this report, and his response was to refer me to an Infectious Disease doctor, which I now know will only throw more antibiotics at me when I go to see him - ugh! While I appreciate all the wonders antibiotics have done for so many people in our world, I know its limitations. As a Registered Nurse, I understand and have seen firsthand the serious possible downsides of long-term antibiotics use, such as C. difficile and antibiotic resistant bacteria). What are we to conclude by this report, then? For me, I can expect that, when the doxy is completed after being on it for several months - AND EFFECTIVELY KILLING MOST OF MY GOOD BIOME - I'll still have Lyme & Co persisters that will reactivate at a later time, meaning that no only will my own weakened biome now be open to other pathogens (think SIBO, or yeast overgrowth), my body may no longer be able to fight effectively, including the persisters that are antibiotic resistant! The cherry on top is that, as many others have experienced, I'm no longer employable. Nursing is a job that requires focused concentration and critical thinking skills (fog brain = not allowed) and is filled with constant stress, meaning I'd have Lyme flares nonstop. I can't coach at this time, either, as I cannot complete my thoughts coherently. No longer having the ability to make income is another stressor that can trigger flare-ups. This is why I am hoping that phage therapy can help. But can it?
: While it is not known for sure as of yet, the phage therapy energy medicine proponents feel that when antibiotics are given to someone to treat for Lyme, the 'round bodies/persisters' curl up - and some of them lose (or were never infected with) phages, leaving only the active Lyme with host phages to be effectively killed by the antibiotic. What's left are Lyme 'babies' that may have no phages, as these proponents theorize. And when they come back out 'to play' as adults, since none of them have phage parasites, the INPT will not be able to eliminate them. Here's another way to look at it. Some of us are on long-term antibiotics. Imagine someone that is on antibiotics, and they want to have phage therapy at the same time. Here's what might happen. If a persister with phage transforms back to its active phase, the phage therapy kills it - done. As this goes on, the only bacteria left are those persisters - now turned active - without phages and ALSO resistant to antibiotics! These 'phageless' bacteria can now multiply uninhibited, with neither the INPT nor antibiotics being able to work against them. Therefore, proponents of the INPT method appear to not favor the concomitant use of antibiotics and phage therapy and sound like they'd prefer someone who has not been on long-term antibiotics as well, with the idea that that those on long-term antibiotics may end up with multiple round bodies with no phages, so the negative end result would be the same. When the phages turn into active adults, the INTP will not work on them. It's complicated, to be sure, but we as a human race are problem solvers! Search - to learn more.
Phage therapy is an amazing thing, and if you research it, you will find corporations throwing billions into building phage factories all over the world even as I write this. My hope is that phage testing and treatment will open the door for everyone across the globe to be able to get testing, treatment and complete healing for antibiotic-resistant bacteria, such as this insidious dirty bucket of diseases called Lyme & Co. While this may seem overly ambitious to some, I hold on to a strong faith in a higher power and will continue to hope for a brighter future for us all.
Whoa okay this is a lot of information haha but very interesting as well! I have never heard of this phage therapy before but if this would work, it could change the game. But like you said, it would probably not work with people who have been on antibiotics, which I think is the majority of chronic lyme patients. Did you do the Lyme bacteriophage test to see if you have it? If it works then that would mean none of the doctors could look at us like crazies anymore... thank you so much for sharing all this information and I will look more into that! And I am sorry to hear how you cant do your work becuase of brain fog... Definitely know the feeling, how frustrating is it when you just cant think sharp. All the best to you and I hope you will get treated asap and can leave all this shit in the past and do the work that you love! Big hugs from Estonia!!
@@ViiveKaiRebane Thanks for the well wishes. I sent for the phage test one week ago. The testing takes 3 weeks to get results. I will post when it is returned. I am fairly certain about Lyme due to typical neurological symptoms and would be surprised if the test came back negative. So far, most everything has calmed down except for the 'ants' dancing on the back of my head; something referred to as typical of Bartonella (of which I tested positive for) in a book called Toxic. This is probably TMI, but I am also getting breast implants removed come June. Having them placed was a vain and regretful decision made years ago. I think I have Breast Implant Illness (BII) and know my body is inflamed from them. I actually thought I had Sjogren's syndrome for several years now and have just learned that of all the negative side effects for 2 types of breast implants, Sjogren's-like symptoms can be present for both of them and are found to disappear after removal. Some people believe the biofilms attach to the implants and thwart recovery efforts. For now, I'm on a no grain, dairy, sugar or processed food diet and am using herbals, NIR light therapy and added daily juicing of celery to treat the Lyme until after surgery. I have an LLMD consult in May and hope to come up with a workable treatment plan at that time.
@@jewelbug8713 OKay, interesting to know! Hope it works out for you, all the best!!! :)
Wauw thank you very much for the detailed information! It gives alot of hope!!!!
@@jewelbug8713 how did it go?
1) resistant biofilms--thank you
2) it's hard for others to watch you suffer every day, be gentle--thank you
I understand. I have my own chronic health problems, and sometimes you might need to see 3 or 5, or 10 doctors before you find one who has the right knowledge. And also try a ton of different pills, remedies and strategies over the years. But the ONE best choice you have is to keep trying and to make any progress possible.
You leave so much of yourself behind, but you make new goals and new dreams. Something different than what could have been, but possibly better :)
Thank you so much for sharing, so true!!! I have a new approach to try different remedies, as long as they cant hurt me might as well try, even if I dont believe in them :) Wishing you all the best!
You are a really good person. I have late stage Lyme and bartonella and have become a raging mad b-tch. I literally hate most doctors who worship the idsa/cdc here in the states and thank GOD for the ILADS specialists who are finally helping me slowly but surely.
I can say I 100% understand you :) I definitely had my moments when I was mad at the situation and the doctors as well. I am sure it is only a matter of time until the current medicine understands the depth of the problem and aknowledges the current treatment is not sufficient for many. Each of us is a proof of that. If these doctors were taught a certain way and have been doing same things for decades, it is not that easy to change things, but I can see the progress and in many countries, the doctors do offer new treatments or at least say it out that they dont know how to help us. Wishing you all the best& I hope your new treatment will keep working for you!
I’ve had Ly disease since 2008 I got bit but I didn’t know I got bit I just know that’s when I start having those symptoms and I didn’t find out until 2015 she was doctors just treating me like I was making stuff up about how I felt and I found a doctor that’s really help me a lot that’s all he does is treat Lyme disease and if it wasn’t for him I don’t think I would be here right now and I don’t only just have Lyme disease I have the Bartonella and The Babesia that’s what causes the chronic fatigue to brain fog you’re off-balance your joints hurt your knees hurt allergies allergies in my eyes headaches before I found the doctor I was laying in the bed for months and months like I’ll be there for 56 days and I wouldn’t eat and I was constantly losing weight if I didn’t feel good I didn’t eat right it’s been a struggle I know that and better as I got like I’m dealing with right now today in the past few days I’ve been dealing with not feeling good the past week is crazy because if it looks like it’s gonna rain or just not raining just cloudy out it makes me not feel good I don’t have energy it’s just terrible it does so much to the human body🥵😳😱
I’m super jealous of people just doing normal every day things. I don’t remember what it’s like to feel good. Such an awful disease. I’ve had a lot of symptoms over the years but the constant 24/7 testicle pain is absolute torture. And no one knows what that is like. Most days a bullet would be welcomed. Just gotta push through EVERY. SINGLE. DAY.
I became interested in Lyme disease after seeing your videos and tried to find more information. I learned that antibiotics do not necessarily help if you have got neuroborreliosis/chronic borreliosis... :( I also learned that the symptoms are much like those of fibromyalgia. Several of my friends have recently been diagnosed with fibromyalgia, and I have even started to wonder, if fibromyalgia is a sort of neuroborreliosis, just without borreliosis antibodies in your blood any more... It would be very interesting to see all Finnish fibromyalgia diagnoses on a map - we could compare it to the distribution map of mites!
If neuroborreliosis really is anything like fibromyalgia, I know your life must be really hard sometimes! Your positive attitude is a wonder!!! :o
Interesting ideas! I think you should compare the rates of fibromyalgia in Finland and Hawaii for example then, because there are no ticks in Hawaii that spread the lyme disease! Sorry to hear several of your friends have it, wishing them all the best! Luckily my disease is not severe enough to dramatically alter my life quality, even though there are some bad days, we usually get them under control rather quickly and I am optimistic that one day I will be lyme free! Appreciate your watching and thinking along! Cheers!
There are many diseases which have similar symptoms to each other. That makes it important to have lab test to show the cause. Example would be meningitis (aivokalvontulehdus) which can be caused by virus, bacteria, or fungi. My friend got it from a tick bite. She was in a long coma. Long-term complications prevented her return to the sport.
@@suokkos Very true, but it gets so hard when it is so hard to diagnose certain things. One way they diagnose lyme is that they see if it can be something else, so they eliminate other choices to make the decision whether you have lyme or not.
After 2.5 years of seeing 12 different specialists, it was actually a functional medicine doctor (not a traditional medicine doctor) who decided to have me tested for Lyme Disease. I have a daily vice grip headache that never goes away (fluctuates with intensity), chronic fatigue, joint/muscles aches, and brain fog. Sure enough, the test revealed I have high antibodies for 7 different variations of borrelia bacteria as well as also having high antibodies for bartonella. I'm on my 5th antibiotic now (4 different oral antibiotics did not work) and I have to now self-administer antibiotic injections. I lost the love of my life to this disease back in October after my health had reached rock bottom, she decided the illness was too much for her. I've recently decided to make life changes and create personal goals to distract me from the illness (it's all you can really do if you are in constant pain). This past week I feel that I have made progress with the disease (feel about 25% better) as I started combining herbs that kill borrelia and bartonella in addition to injecting antibiotics.
Thank you for sharing this video as it has mirrored my experience and the good and bad things that have happened with having this disease. It's good to know that there is a community out there for people like us and I appreciate that you took the time out of your day to make this video.
Many people cured it with a fecal transplant from a healthy Donors
Or fecal transplant pills
The problem with abtibiotics is they mess with gut microbiome which in turn messes with immune system.a viscous circle
Lyme symptoms since 47..I'm now 59....it did destroy my old life,but like the proverbial phoenix I'm rising.....in Australia doctors won't diagnose you with Lyme ,for fear of being deregistered,as it apparently doesn't exist in Australia ( yes in our global society,even) The few doctors who do treat Lyme are persecuted by the AMA ...so now I'm finally being treated by a Lyme specialist ( not Lupus,not auto immune,not Ehlors Danlos,not depression....that alone has helped my psyche...also please let the Specialists know im not crazy..I have a long road ahead of me and already feel I can breathe better and malaise is better..my diet is strict..no wheat dairy sugar ,only occasional drink of wine...my question for anybody out there is about my neuro symptoms ...what works best for you? So sick of dull headache ,dizziness slow speech and not thinking clearly.Praying for our community..stay strong.
Hey Simone! Thank you for sharing your story with us. I am bit shocked to hear that Australia doesnt even admit lyme exists, that is unbelievable. With people travelling all over the world, how can doctors deny the existence of it??? Wow! But I am glad you finally found someone who is willing to help. As for my brainfog episodes, I can tell that it helps me if I go and move- it gets the blood moving faster and the body always feels better after, even if moving is really the last thing I want to do while having the brainfog. I also feel much clear when I am taking Cats Claw tincture- it is suggested against lyme and really helps me to get my mind sharper! You can also just google how to get rid of brainfog, and try the simple tricks that people are suggesting! All the best to you and hoping you will make a full recovery!
@@ViiveKaiRebane it's not tick-- it's mosquitoes. It's bioweapon
I think it’s a bio weapon, that’s why they’re not doing enough.
Thank you so much for making this video. I have been sick, exhausted and in neurological pain for 8 years. I have been turned away from 12 doctors along the years due to every test being normal. I finally had a spinal tap on Thursday and am PRAYING for neurological lymes to show. I am 100% sure that this is what I have. I have been out of work now for 4 weeks due to my physical limits. This is so hard to no longer beable to meet your potential. It felt so good to relate to someone. Thank you.
There is a lot of studies made that when you go to Sauna at least 5 times in a week and lay there 15 minutes, your stress levels are dropping dramatically. If you have a chance, try to go into Sauna so many time its possible. It cured my high blood pressure, which stress caused.
Good to know, I didnt know that, thanks! :)
Or if you can get a kitten to lick your ears, that's the greatest therapy known to man' :|) honest''''''''''
@@nigonkouk1770 Haha kittens grow so fast, does one session do the job?
@@nigonkouk1770 yuck, they carry parasites.....& so allergic to them
Thank you so much Viive Kai, I am one of those people you said you knew you needed to make this video for!! I relate to EVERYTHING you explain...it was a Naturopath that discovered mine ...I'm sure I had it for awhile.....a teacher for years and had to quit because of all the symptoms and developed Neuropathy, and have been on herbal remedies to kill off the bacteria. I feel it's helping but I need to be more regular and consistent with taking the formulas. Just yesterday, I woke up to find my pinky numb....thinking oh no...here it comes again and now in my hand?? I cried....but I'm hopeful my herbals will continue to kill off the spirochetes and like you said eating clean, exercise comfortably, food sleep, and minimizing stress. I thank you so much for your insight and being open and vulnerable to share this with the world❤. Best of luck to everyone. The program I am taking is 'Dr. Rawl' please look up his story....doctor who cured himself and made a handful of formulas to help others fight it off for good too❤
This is the first time I have commented on a RUclips video in years. Thank you for sharing your story. My daughter was diagnosed with Lyme about 6 months ago. She is 17 and has not been able to go to school for almost a year. She cries her self to sleep saying I just want to be normal. She wants to go to college next year, but I am very worried it might not go quite as she hopes. She is completing a four week IV protocol and it is near an end and she does not seem to have improved much. I believe that she is very much in the same boat as you have been. Your strength, self acceptance and determination to live a good life are inspirational. Thanks again.
Thank you so much for this message and I am so sorry to hear what your daughter has to go through at such an early age! I definitely have gone through the same frustration of just wanting to be normal or get my old life back!! I kinda fell into this victim mentality (why me? I can never do this again! I would be this if I didnt have lyme etc) and I needed to grow as a person to overcome this and accept that I have it and that it is hard to treat. It gets much easier after this acceptance, because instead of wanting your old life back, you are focusing on finding solutions. Every time I get a flareup, I analyze why I got it, and what can I do to avoid it next time. But I do believe that the positive attitude makes a huge difference in this battle, gotta keep the head up and not freak out about the setbacks in symptoms or not feeling like you are improving. Flareups are gonna happen for most of us, but we dont have to react emotionally to them, rather take them as inevitable part of the journey that will happen, and it is okay because they too will pass. And I didnt feel any better either during the IV treatment, it is hard on the body as its killing the good stuff as well! So dont be discouraged by that! Not sure what her symptoms are, but lately my symptoms are same as those of neuro inflammation, so doing everything that lessens the neuroinflammation has been extremely helpful to me. Just something to think about. I am really wishing your daughter all the best and that she will beat it soon! And I am wishing you strenght as well to help her and be there for her when she needs you!
What’s her symptoms?
I'm so sorry for you. I think you should change your overall day life to stop stress
Just a question is there lyme desease in finland
Yes there is quite a lot of Lyme disease in Finland, as there are a lot of ticks in the nature! Thank you for the comment and all the best to you!
If I didn’t google my symptoms I would be lost!!!!!❤
Exactly!!!
@ViveKaiRebane. Thank you so much for this honest presentation. I have had a bite since 10 years, and been to so many doctors here in Denmark. I have also been to skin doctors, and so far not one person has tested me for lyme disease. The bite mark never goes, even after so many different external creams. However, now my entire body is falling apart since the last 8-10 years. I am pushing my doctor to test me for Lyme, and have an appointment in a few weeks. Let's see what happens.
Thanks again. Regards, Ian...
Lyme warrior since 2008. Responded to antibiotics but after 10 years hit the wall again. On an herbal protocol to try and avoid long term abx toxicity. Making some progress until I had a lymphatic release massage with severe detox reaction. Moral of the story: keep moving, or your lymph backs up and becomes a toxic soup.
Thank you for sharing and keep on fighting, you got this!!! I have realized I always feel better when I move more, even if I am really tired and moving is the last thing I want to do. Somehow gets the blood running and makes me feel better afterwards. Hoping you will find the answers you need, all the best to you!
sauna important for this reason..,,along with methylene blue
The constant dizziness and overwhelming feeling of getting ready to pass out with Lyme is absolute HELL.. but I am 47 years old you are younger with a promising career in sports it makes my heart ache for you and all the young people that have it
Thank you Maria and I hope you will get better soon!!! It is hard for all of us, no matter who we are but yes, I look at the same way children, who get their childhood stolen... hopefully one day we will know how to beat it for good without all this mess! Sending you lots of love!
How did they diagnose you with neurological Lyme Disease? I think you mentioned spinal fluid? What does that entail?
They take a cerebrospinal fluid sample with a needle- bit risky procedure actually so they dont want to do it unless they really have to. And then they look for antibodies and diagnose based of that! You can look up lumbar puncture, thats what the procedure is called.
Well, I guess I'm a new subscriber to your channel, because by chance I've watched a couple of your videos now and you are a very brave soul. It's probably not easy to open yourself up like this and talk openly of the challenges you live with. I'm glad you also talk about all the good things and your 'new' life in Finland. Look forward to what you choose to share with us. :)
It is so sweet of you to write me this message, really appreciate it so much!!! Thank you for the support and all the best to you!
Viive.....God Bless You and I offer You advice I myself have learned during my illness..offer Your sorrows and pain like I do daily up to Our Lord and our Lady Mother Mary because God has given You this cross to carry...I thank you for helping me and many others understand lyme disease...You are the poster woman for advising the world about possible cures ...You are precious in the eyes of God...😇mark
The Amen Clinic in the states may help you heal your brain.
A great video. I've been sick a year and have been treated for Lymes and Ehrlichiosis for 7 months. Antibiotic for 5 months and now on 7 different herbs. Good days and not as good. I've never done so much self care in my life. Chiropractic, acupuncture, massage (cranial), PEMF. I have a great Dr and it was the 8th Dr over the course of 6 months that diagnosed me. It really stinks but I'm gonna be better . Thank you for this video. Praying for everyone.
Hey Michelle, thank you for sharing! Hoping you a speedy recovery!!! Seems like you are on a strong treatment plan, I hope it is the right one for you and you will get your life back!! All the best to you :)
Michelle Ihry..how do you like PEMF & what maker did you use???? Ty
I did alot of PEMF at All Seasons Integretive Health in fargo. I do not remember the maker but can get you that info. It really made me feel better.
Pulse threatment of a chinese herb oshi root will help, pulsetreatment is with antibiotics, short higher dosis and pause yhen again a dose most 4 to 6 times will kill persisters produced by lyme bacteria.
I have been struggling for 30 years!!! I have had every symptom of Lyme, but I got diagnosed with everything but Lyme. I could go on forever. I found a dr that treats Lyme and took the antibiotic for 6 months and then again for three months. It helped while I took it. I did find someone just very recently who said she was CURED by a Dr in North Carolina I think by the dr using the person's own DNA. I need to talk to her again, but haven't seen her. Because I would gladly pay almost whatever necessary to finally feel well. I forget totally what feeling well feels like.
Any doctor who doesn’t acknowledge Lyme deserves to have their license revoked permanently. Unfit for medical practice.
Thank you for sharing your story....there are so many with the same. Our daughter is one of them. We remain hopeful for a cure for everyone. I am so sorry you are going through this. It is all insanely complicated! This steals your life, without taking it😥🙏❤
That is very well said Alicia: It steals your life without taking it. Exactly how I feel at times. Just days and days gone to waste. But it gives me strenght to know I am not alone in this and that others know how I feel. I wish you and your daughter all the best and I believe we can beat this!
I taken a ct scan test some lab test but its all negative and now i have a another test that they callNERVE CONDUCTION STUDIES AND ELECTROMYOGRAPHY nextweek
M'y daughter was finally diagnosed 3 years after she was bit. Doctors closed there door on her. Until we finally met a naturopath who was knowledgeable of Lyme Disease, did we start to treat it. After 3 years of treatment she was found to be cured of Lyme. She still lives with what Lyme did to her organs, cardiovascular and neurological problems, it never completely heals.
Where do all my comments disappear?
Sometimes comment go to be held for review but I dont see any there, so I am not sure!
Thanks for this video and putting yourself out here so vulnerably. I have had symptoms for many years. I have had ticks since I was a child. I was tested for Lymes a couple of years ago after a tick got in between my toes and left my foot blistered which I had never seen before. It came back negative. It's hard to know when I got lymes I've struggled my entire life trying to go and having the energy to go. Feeling like why am I this way am I just lazy? Even though I had some success and really did well in lots of areas now that I am 62 and older it is really hitting me. My doctor could not find the Lyme's Disease by the test I recently had the a s y r a test it shows that I have Lyme's disease in my brain and two other areas. I am now on the search for help. I loved your video and will continue to watch. Thank you for sharing all of this❤
I had it bad for like 5 months..i had heart rate problems and super high blood pressure....nerve pains, brain fog and memory loss... back pains and insomnia...depression...i was on antobiotics for months and it really did not work... i started taking an herbal extract tincture for lyme that worked and now i feel great...
Thank you! This makes so much sense. So basically, if you have symptoms then treat it by treating your immune system naturally so your immune system can heal us.
I have been diagnosed by symptoms and brain MRIs as having MS. I have not had a spinal tap but may when I see a new neurologist.
I have been on a ketogenic diet though for a few months worth mostly stricter carnivore. I have noticed in this last week that I am not having the burning I my limbs now like I did over the last 2-3 years.
Oh, now you are talking about biofilm, I have a probiotic with a strain specific for that. In fact in 2 doses back a couple years ago I had laryngitis for 12 weeks that no Dr could resolve and on a fluke (aka God) I took ProBio5 just for the sake of gut health and suddenly this film started slaughing off my throat and my voice was back!
I found out it was biofilm. Months later I found out that specific product dissolves biofilm!
🎉🎉🎉🎉
You are Amazing for telling your story! I think I have had lime for over 25 years and was never properly diagnosed with it until I went to a Amish Nutritionist who took a drop of my blood and studied it under a microscope and then came back and told me I had spierocheets in my blood! I have it in my brain now and in my muscles, eyes,ear, and I think in my organs I'm so scared from this disease because I have taken antibiotics after antibiotics and have other test done and no luck from any of the Doctors or from the labs that have came back! I just want to be normal again. It has robbed me alot of years and I'm also scares that my children may have been born with it in there bodies I 🙏🙏🙏🙏and hope not. If they tell me I dont have it I'm going to John Hopkins University and have them run test on me again! Thank You for your story it made me fill really good inside and inspired me to keep pushing forward THANK YOU🥰
Update from my recent post.
My problem with bee venom is that I like thousands of others are allergic to bees, wasps and hornets.
I do not know a lot about it but I do know the science behind Lyme Disease.
I will however, investigate the bee venome further!
I am wondering if I have Lyme disease. I have been dealing with fibromyalgia for 25 years now. I got super sick with the worst chronic fatigue where I fell asleep standing up all throughout the day. I have had a ulcer on my leg for 19 months now that’s not healing because my legs are so tight and swollen. I was misdiagnosed with scleroderma then EF. I have every symptom of Lupus except a positive ANA. I have severe chronic pain, fatigue, headaches, leg swelling and hardness and so many more crazy symptoms. I can go on and on.
I have no idea what is going on with my body but I can’t take it much longer. I have no quality of life and have lost so many friends. 😢
I’m so sorry for everything you have gone through.❤️
Thank you for this video.
Did you get LYME test now. No one wants to treat it. My only hope is You Tube. I am positive. Antibiotics were to late so good luck to me.
Blood vitamins can come back normal, but because person cant absorb it right, cells dont get the nutrition, so blood test all of time are not valid..i truly believe fixing the gut is so important, immune system is there, and alot of people have leaky gut, and then all the problem starts 😊
Hi - your story made me cry, particularly the bit about forgetting what it's like to be a healthy person. I had neuroborreliosis last year and spent months in hospital paralysed up to my belly button, I had no bullseye rash and after many incorrect diagnoses I was finally diagnosed correctly after a lumbar puncture. Frustratingly I had also googled my symptoms and had zeroed in on neuroborreliosis and asked 3 times for a Lyme test whilst in hospital which was discounted until MRI scans and loads of other tests were coming back negative. Anyway I was a also a very active runner and cyclist, coming up to 1 year on I am out of the wheelchair and all walking sticks are gone. I do however still have significant nerve damage in my left foot and calf, a bit of a limp and a lack of sensation. Touch wood no other symptoms and I think the disease is cured, just the damage to heal and I am hoping in another year I might be back to normal as I am recovering slowly each month. I hope you continue to improve and get back to normal too,
Hey Jawn- thank you so much for sharing your story! Sorry to hear how bad it got for you and that they wouldnt do this easy test for you- unbelievable how little doctors know about lyme! I think that is why it is important for us to tell our stories and keep raising the awareness! I can only imagine what a struggle it has been to get back to a somewhat normal life for you, especially if you are used to a very active lifestyle as an athlete! Wishing you all the best and hoping the nerve damage will not be pernament for you! Greetings from Estonia& thank you for well wishes!
@@ViiveKaiRebane Thanks. I was in Estonia once upon a time. Really liked it and especially after a few glasses of Vana Tallinn! Best wishes from Scotland x
@@darthjawn Hahaha this made me laugh :D Vana Tallinn would get the job done!! I went to Scotland few years back... my brothers took me to almost every whiskey distillery there was! Not really my drink but I loved the oysters we had!!! Isle of Skye was also so beautiful :)
Wondering how you are doing. Hopefully you have made a full recovery. I found your journey interesting not only for my own health issues also for a friend who's daughter has been left in a wheelchair with no "apparent cause"
The thing is I am so exhausted from fighting and being gaslit for decades I find it near impossible to put forth more effort....
@@justdawndb hi well I had 12 months of improvement but it really flatlined after that and I’m still left with fairly significant neuropathy in my foot, maybe 15% feeling. Anyway it’s not massively limiting me on anything just frustrating. In your own case push to see someone in tropical diseases and don’t give up, I’m sure it’s exhausting but awareness of this disease is improving all the time.
Just been diagnosed with borrelia bartonella and babesia, 7 years being told I'm fine .its not even on UK doctors radar! I can hardly walk now .. thanks for video
Sorry to hear that!! But it is good to finally know at least!!! Wishing you a speedy recovery and thank you for sharing!! Cheers, dont give up!! :)
These personal stories are very important for me to learn. Thank you for opening up your life to us 🙏
Glad to hear, no problem! :) Cheers!
Thank you for sharing your story...i had Lyme bullseye 🎯 end of September and full on symptoms...only given 21 days of Doxycycline for which the Dr. originally wanted to give only 14....im discouraged 😞
Hey, sorry to hear! Are you still struggling with the symptoms? Usually the 14 days works if the bite has been recent and longer chronic lyme happens if there is bigger delay between bite and the antibiotics, so they usually start with the 14 days. I know a lot of people who got rid of it with 14 days but they did get the treatment right away! If you are still struggling, I can share with you what finally helped me- bee venom therapy! So many people in the bee venom therapy group have gotten totally rid of it after trying everything else that didn't work! We just need regular honey bees that the beekeepers use and sting ourselves 3 times a week! I am not gonna go into details but you find all the information you need in the "Healing Lyme with Bee Venom" group on Facebook! Join the group and go under files, and then find the Bee Venom Protocol pdf! If you have any questions you can search in the group, probably your question has been answered already there! Or if you don't find, you can always ask in the group as well! My experience has been super good with it so I really recommend reading through the materials and looking into it! Best part is that it is very cheap and you can do it on your own, so you are not dependent on doctors who don't believe/know how to help you anyways! Sorry to just throw it out there but bee venom has brought so many people back to health and the best is that it is very cheap treatment that people can do at home! It helped me so I just want to share it with as many people as possible! I will make a video about it also in the spring!
Active spirochetes are visible in the blood, under microscope. So are some co-infections that might contribute to symptoms.
Have you tryed and heard that oregano oil kills lymes disease. That’s what I read. Wonder if it works and if it does is it only right after a bite or what ? I am sorry to hear this and wish you the best
I got that symptoms lastweek so ill go to the doctor to say about this desease because ive got bittem by lyme and now im suffering from numbness of my 2 feet and 2 arms and sometimes im feeling that theres something that running from under my belly ang sometimes from my spine to my neck plss somebody can advice me what to do what doctor can conduct me a lyme desease test
These drs that act like this very dismissive gaslighting are not independent researchers, are not experts and don't know about Lyme at all. These drs and specialists are followers and they follow the wrong advice and are told to be dismissive.
i heard you must do 28 days of antibiotics , and you might want to use rife fequency to heal yourself
I'm going trough this hell too. Had plenty of various neuro issues for past 8 years, started with Crohn's disease around 2017, then had positive borrelia test in 2021 but the doctor said it's common not an issue but just now in 2024 I've pointed exactly the tick that gave me this in 2019 and the spot is still hurting time to time. Every time I had a stressful times a new symptom showed up, it broke me physically and mentally but just now I've found out and will trying to address it. Also many people with Long haul Covid is showing Lyme disease history which most likely isn't just coincidence.
Carnivore diet helps many with Crohns. Check out Dr Ken Berry. The diet is hard but it can help many autoimmune conditions. Hope this helps.