I don’t know who I am anymore!
With 125,000 new cases in recent summers in the United States, and 8,000 in the U.K. Deb Brown’s case and a list of celebrities it isn’t a rarity globally. Images!
Anonymous Statements:
I can’t finish any of my sentences because of Lyme. I hear it all the time from coworkers. It sucks!!! When we know what we want to say but it won’t all come out. Lyme Disease, not only, has its own symptoms, but it can cause damage and other disease in your body which leads to non-stop life long issues. Nobody understands what we deal with!!!!! My boss thinks it’s a joke he doesn’t get that we are in pain, people just cant see it. Nothing good comes from GETTIN it ..people don’t realize the after affects… Lyme Disease causes long time problems.
I hate the depression, Crushing fatigue, the brain fog: Losing my brain (memory, speech, words) and everything else. I despise How it changed my life for the worst and that I will leave a young child behind and Same here, my baby boy is 4 yrs old. I’m afraid I have passed it to him. He was born hypotonic. The feeling of guilt is horrible. He is the best thing that has happened in my life, he is fragile and precious and wonderful. I would like to see him grow Healthy. Feeling like I’ve aged twenty years in the past five! I hate the fear of the Unknown. I hate the exhaustion it causes: Not being able to participate with friend and family because of exhaustion and pain. Not being able to participate with friend and family because of that exhaustion and painful loss of life. I hate that tick stole my brain and emotions.
That’s it’s changed my life and I’m afraid/fearful of dying and leaving my children behind. I hate The havoc it has wreaked on my family & friends. I hate No one ever says “hey how are you feeling today” Everything hurts, there’s always pain. I wish I had my old energy back. I hate How its changed me as a person I am not the same person. After 2 years really understand that it never goes way, its inside of us and it can shows up any time it wants too
I hate Never ending exhaustion. That there is no cure. And we keep taking tons of antibiotics and supplements and all these other expensive therapies thinking maybe it’ll help. When it doesn’t. Ruined my ability to be a musician, an athlete, and to live life as I chose. Never understood people who were boring or lazy. Now i’m both. It took myself from me.
That it completely stole me from my teenage children who are now adults! I couldn’t do things with them like I wanted to and my youngest son was in band and I couldn’t sit in the bleachers long enough to watch him play! I think about that now and it just crushes me! He moved out in 2013 and I’ve only seen him probably four times since then. Not that he’s mad at me but he just grew up alone and is used to being alone and that just breaks my heart! The hate the pain and isolation it brings.. lack of empathy by medical community.
I hate How much it robbed of my life and The $$$$$ and time it costs to search for the right help. That even after getting considerably better you can always relapse or relapse prior to getting well. Absolutely everything! It ruined my whole life! And still is … the pain is excruciating and the neurological stuff is debilitating…. I wish I can be a healthy 21 year old. My youth is over. The pain and unconcern from others since it’s an invisible disease.Nobody can just tell me how to fix it..so I can get on with life. I hate the solitude.
The insomnia 
The complete exhaustion. Always It took my youth before I could even live it. I HATE How even when the doctors know you have it…. they still think your faking things… and expect you to just roll over and relax when bills still need to be paid and life has to go on! It’s Kind of a catch 22 and it stole almost everything in my life that I care about…it’s the incapacitation and disability, not being able to do things.
Not knowing what NOT having it feels like. Not knowing what weird unexplainable symptom will happen next 
It destroyed my life!
It destroyed my life! I hate the ups and downs, dysautonomia and that people don’t get it…until they get it. I hate unpredictability: That people DO NOT understand that just because on most days I don’t look sick doesn’t mean I am magically cured. I hate the other peoples excuses for leaving and giving up and saying its not their illness.. it has stolen my whole life.
I hate the Cluster Headaches were the worst part for me and lasted on and off for years. 
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I hate the Wondering.. Wondering what life without it is like.. Wondering if it will kill me. Wondering if I can get over this flare. Wondering if I will be treated different for my imaginary illness. Wondering where my kids are gonna be, if I can take care of them.. Wondering who will take care of me when I’m too sick to take care of myself.
I hate Being sick and tired of being sick and tired…. and the pain!
Oh! And the fact nobody gets it! Or thinks I’m faking being sick!
I hate The whole damned thing! The extreme migraines with total aphasia, the tinnitus, the dizziness, the blindness, the memory loss, the excruciating spinal pains, the lying, duplicitous doctors, the thieving insurance companies, the pharmaceutical companies their meds that are $6 everywhere else on the planet, except here where they’re $1100, on and on! Just the WHOLE DAMNED THING!!! 
I hate That I have to fight to have the strength to earn a living, and that treatment is so expensive or hard to find. I Hate That I have to fight so hard to get treatment while being sick. 
What it does is steals a big part of you and humbles you! I HATE The controversy over it all. I feel like I have no one to talk to you about it because when I try to explain it to normal people they just can’t comprehend how someone could feel so horrible and have such strange symptoms. Explaining my difficulty thinking clearly, speaking sometimes or learning new information is the most annoying.
I ask all my friends to watch Under Our Skin. Under Our Skin-2 It’s a pretty accurate!
I Fear that if i go before my child, there will be no one who believes her or understands what she’s up against or is willing to try to find a way to help her and that’s my biggest feat of them all. What I hate most about Lyme is that you don’t know what you are doing right. I hate the Lack of support on all levels (insurance, medical, friends..family)
I hate Being rejected by those I turned to for support and that’s so sad xx
I hate The moodiness, I push everyone away and pull them back just to push them away again. I never want to see my friends, because I am terrified I am going to hurt them beyond repair. It is so horrible to feel this way. I hate Having to fake every day, trying to not be a bore, complete isolation as no one understands Fighting the medical profession who use all their energy on trying to convince you and don’t have adequate testing. That you don’t have it rather than trying to treat you. Also Complete change of personality, the extreme fatigue and the way it ravages the entire body and mind!! I hate it won’t go away 
I hate Not knowing for sure if I’m going to get better or not. I just want a solid answer so I can plan accordingly. I hate those closest me: Friends and family thinking I’m faking it, and not trying to research themselves or even just ask me to explain… so that they can understand. I hate EVERYTHING!!!!! The horrendous 24/7 pain would be top, however, for me the former is an even worse torment to bear. Pain & sheer disbelief from others, combine to make coping (while trying to heal) a very hard journey indeed. Not remembering to keep this attitude if i can And post exertion malaise 
I hate The fatigue, brain fog, pain, years of my life wasted in bed, my son of 13 growing up without me, never seeing the real me. I hate how it steals from people. It took away me…. and when I had a good few days it felt like coming out of a coffin… into which I would tumble back, but I had a day or two here or there of how I used to feel – appreciated!
I Hate Not knowing what symptom will get you next.
When it’s going to happen and regardless of if Lyme is written on your medical records the first thing you notice is at the top of the list is hypochondriacal disorder. I am diagnosed as “delusional” apparently I’m fixated on Lyme disease!!!! No kidding!!
I hate the improper medical care from main stream doctors!! I want my insurance to cover my bills. I hate the PAIN-so bad I prayed to die.
I’ve lived with it long enough to learn it is non helpful to focus on the negatives, hard as that may be. But still good to vent once in a while I feel. mostly if those close to you can’t relate, then venting to fellow tick disease people helps me to know I am not alone or forgotten. I hate That it exists bacause in today’s world people are numb and don’t notice much sadly!!! I hate That in my head I’m still me, and want to tackle adventures. But reality is.. I don’t have the stamina, or mental acuity I once had, so my realistic avenues are different today than in the past. We want to but…….I can’t be the person that I was and I don’t like the person I am!!!!!
I hate Not knowing whether to continue treatment or stop after 14 months…. symptoms for me were always mild but positive Igenex test showed me I have/had lyme…. I Hate the Debilitating symptoms to the point of despair, being seen as pretending to be sick when I am really pretending to be normal, being dismissed by doctors, being an outcast, missing my life… I Hate It not being recognized and treated for the illness that it is.
I hate The lack of understanding globally, and for me? It would have a life changing affect on every aspect of our life and our economy if it was.
I hate That it has no limits. Just when you have worked out how to get rid of or ease the pain, it moves onto another part of your body to cause more pain and suffering. I hate the Constant pain that has taken away my life! I hate Being online in the morning on Saturday ( and every day) looking for any advise ( mostly from fellow sufferers) and
no real help from doctors. Tried all, including LLMDs, many of who just exploit our situation for financial gain.
I hate People’s lack of empathy or understanding of this awful disease. Those of us afflicted with it constantly put up with people “helping Us”., sending us newspaper articles etc. I mean really? I have the intelligence and desperation to research my disease on my own, since the medical community turns away from it. Although it Seems that people around you do have some sympathy if they send you articles, how can you ask for more if even doctors dismiss chronic Lyme. The problem is that there is NO REAL SCIENTIFIC RESEARCH funded by the government!
I hate When people quit being your friend/family because you are sick. Isolation makes everything worse. I hate Being so sick and Doctors not knowing enough about it to test and get treatment. Your family thinking your a joke bc Drs. can’t figure it out so it MUST be all in your head. I hate my family gave up on me .They think I’m crazy. I hate that there are so many things to hate about it. I hate That people don’t give af don’t care about your pain, the fatigue and the fact that most people don’t understand!! Oh and you have to beg doctors to see and treat you!!!!
I hate how a flare up comes out of nowhere and lasts for an indeterminate amount of time. can’t tell you how many times that’s screwed up my schedule. I hate the Lack of lasting effective treatment and educated doctors willing to research the coinfections that are destroying us. I hate my wife complains about being exhausted the most. I really wish there was more I could do to help her .. but hate the lack of understanding by everybody?
Lyme Rage is about Life frustration of not knowing. It’s like riding a roller coaster that’s all messed up the fast up and down. I just know the anger it’s in me. I called it tiger with a tooth ache (tame to wild instantly). The only time I’m enraged… is when, I listening to a DR. Tell me I need to exercise. I move my entire body all day until I just can’t anymore, then I feel like I have no strength and lots Of pain, from no rest from too much exercise. Yes, depression and anxiety.
For me Lyme rage is that I would just snap over something I normally wouldn’t snap over. It was the worst in the evening when I was more tired. I wonder…is it plausible that Lyme rage is inflammation/histamine/immune related? I have alpha-gal and when I have had airborne or food exposure…. histamine levels are increased…this can cause reactions otherwise and toward the end of coming out of a reaction like that I have a “rage” (more like extreme irritability I have absolutely no control over even if I tried). Then it suddenly goes away.
My daughter has Lyme and if she has had dairy she also has this extreme irritability…would an antihistamine possibly help to alleviate these symptoms some?
It’s horrible. It’s like every single emotion, especially anger hitting you in full force.
I flipped the heck out today while trying to pay bills online, then again getting my kids maps together for the first day of school. Thank God my husband wasn’t home. He probably would’ve also had me committed. It can happen out of nowhere, and stress, anxiety, sadness and anger make it 100x worse for me some times. I’m normally very calm, cool and collected. Today I was a raging psycho that was acting like my meds wore off.
it’s a scary feeling not to be able to control it. I don’t get like that often, but today I was so hot headed that I’m surprised that my fire alarms didn’t go off. A lot of my issues I think are the fact that I don’t show much emotion to anything other than love. I don’t normally cry, grieve, take time for myself and I do everything for everyone putting myself last. It’ll be a year in October since my dad died a very slow and painful death., and I think that I she’d a few years and called it a day. I’m a very emotionally numb person to certain things, and that’s not healthy for anyone. Especially not for people like us. Then hear and there everything that we feel comes out at once.
I cry a lot lol but I do put everyone before myself and then sometimes I just lose it. I hate taking my random anger outbursts out on those I love. It’s frustrating and I warn people it can happen around me, that simple arguments can turn into world war, yet they still like to push those buttons and I cannot always control myself and walk away, it is a real struggle and hopefully they will write about this and help us not be incarcerated for losing it when something triggers us.. I am uncontrollably angry anything and everything makes me mad I cry I scream and yell. I try to control it but I can’t.
Anything can trigger it also, dirty dishes and laundry actually I could go on and on, not enough time to get things done, my kids talking back (no I try to keep my fits away from them but they’ve seen a few). Lyme rage is when you get really upset about trivial things and make a total ass of yourself…and feel guilty as hell afterward. Once I started taking Empower Q96 and lithium orotate…the rages ceased. Didn’t know this was a thing.
I’m 40, almost 41, and started going through perimenopause at 39. I assumed my crazy moods and rage was due to that and trying to get my hormones sorted through HRT.
Yes it’s a thing …Yes it is !!!
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How To Find A Lyme Literate Doctor (LLMD) In Your Area
1. The International Lyme and Associated Diseases Society (ILADS) is a great way to get a Lyme-literate Doctor referral, and is probably the best place to start. Go to their website www.ilads.org , email them at contact@ilads.org or call them at 301-263-1080 (they are on EST). ILADS is the “gatekeeper” for most Lyme docs in the United States. They may also be able to point you in the direction of an LLMD in another part of the world if you reside outside of the Unites States.
2. Lymenet.org has a Lyme disease forum where they have a “Seeking a Physician” section. Here, members of the forum will give you the contact information for LLMDs in your area from www.lymenet.org. When you go to Lymenet.org’s homepage, click on “Flash Discussion,” and then click on “Seeking a Doctor.” You will be asked to enter your city, state, and contact information, and a Lymenet.org forum member will contact you with a physician referral.
3. The Lyme Disease Association has a Doctor Referral Service: Go to www.lymediseaseassociation.org and click on “Doctor Referral.” You just need to give them your contact information and they will give you a doctor referral.
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There are also other herbal protocols for Lyme disease that I’ve since learned Google: Dr. Lee Cowden, Dr. Byron White, Dr. Dietrich Klinghardt, Dr. Richard Horowitz and Stephen Buhner (which is the protocol that Dr. Rawls based his program on). Also Read: Dr. Buhners book Healing Lyme.
These are all protocols you can do on your own, with a doctor, naturopath or herbalist. The key thing is to find someone who knows the protocol you choose. https://store.
Herbs which I have successfully introduced into my personalised protocol for symptom management include: curcumin, teasel root, poke root, motherwort, elecampane, and pasque flower. Coinfections Lyme disease typically occurs in the presence of a range of coinfections, both viral and bacterial, the most prominent of which include: babesia, anaplasma, ehrlichia, bartonella and mycoplasma. https://
My Lyme Disease Story is full of frustration, perseverance, and hope! I was sick for 10 years with chronic lyme disease. In this video, I talk about my diagnosis, medical journey and advice for those going through the same thing! 