Lost in the Land of the Undiagnosed

 

Sometimes I feel lost. Lost behind the world of the diagnosed.

There are no fundraisers for me. No walks, no T-shirts, bracelets or ribbons. I am the lost within the lost. Aren’t we all in some respect? Trapped by our bodies and lost to the world. A Spoonie KNOWS what it feels like to cry in that hidden crook, lie about how we feel, and watch the world leave us behind. The feelings of loss lead us to a path into the lost.

  But what of those that have no name? We have no answer for friends who care enough to really hear the answer to,” How are you doing?” We come across as liars. More so with each month, year, or decade that float by leaving nothing but a wake of pain in its path. We loose more and more friends. Those that were steadfast for 10 long years finally throw in the towel. We are convinced that these are the reason, which at least is what we think.

Okay, enough with the “our”, this is painfully with a self involved touch, about me. Perhaps I am alone in feeling this way.

  I find kinship here in the boards. I know I am not alone in my suffering. And for that I will forever be grateful. But I admit the green monster that creeps in my shadow. He’s envious of the organized fundraisers and wishes he could have a name. He is Envy. And he makes an ugly person of me. On the days he sticks his head out, I am nasty. I may be snappy or rude, but I am ALWAYS jealous and angry about being jealous instead of supportive. Even writing it makes me feel like I’ve an ugly heart.

  How come I can not find it in me to just be glad to have the sisterhood? The one’s offering an ear or hug or spoon. And like schizoid-typo, I am both. I wish I could walk for Lupus and MS; while in kind, I long for recognition for MY mystery. It is just as real, but how does one address the invisible? How can I get to healing myself when I’ve no idea what’s wrong.

  It’s autoimmune they say. Those are neurological symptoms they say. But you are an enigma is the written diagnosis for me. Hurrah! I’ve not only felt lost behind those with a name, but I’ve lost my friends. I’ve lost some family. And most disturbingly, I’ve lost doctors who lost patience in my frustrating condition. *sigh* All loss, and lost.

   Why on earth should I be jealous of a named chronic condition? Why do I crave it so? Perhaps I will never know. It just is. But my fellow Spoonies…I will always have love for you and hope to never feel lost in our connections!

Alas, I will continue to creep among the diagnosed. Hopeful for their comfort and financial gain to work that sucker to a cure! All while envious of their Names in the tabloid! These are ugly diseases, but as I’ve learned in here, always existing in beautiful carriers.

Written by Sonja McDaniel (sacredjinx on our butyoudontlooksick.com message boards)

I’m a 37 year old female undiagnosed for 12 and a half years. I live in the SF Bay Area surrounded by my wonderful husband, my mom and all of our rescued critters. I’m living proof that you can’t judge a book by it’s cover! Punk looking, art making’, book reading freak!

©2024butyoudontlooksick.com
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  • Grace

    My husband was sick for 40 years the ten MD’s seemed clueless so he gave up It was an naturopathic doctor that suggested a test He had SIBO hydrogen and methane small intestinal bacterial overgrowth he went on antibiotics nothing Then he took three weeks of Elemental formula no food just powder to starve the bacteria guess what he was CURED !

  • Sunnyskiesahead

    First off, thank God for this site . Everyone that is ill with mystery illness keep the hope and faith. I saw tons of MD’s and several told me they did not have the time to look deeper because their job did not give them the time needed . So they told me to see Alternative medicine doctor/ naturopathic the doctor that broke my case was MD/ND and Chinese medicine doctor super cool doctor For what at it is worth when I was sick I saw 80 doctors.Then I went into several IV rooms for ozone IV’S I met people with chronic illnesses that had seen 100 doctors, 200 or 300 doctors some people went outside the country searching for answers. Many of these people were not diagnosed by their MD’s because the doctor failed to do the correct test and or the testing method was at fault or i not got at diagnostics . Find a real live diagnostic expert . 88% if initial diagnosis is incorrect according to MAYO that means most people are misdiagnosed the first time ! YIKES! If you suspect Lyme you must see a Lyme literate doctor that will use the right lab tons of people had late stage Lyme in these IV rooms because the MD depended on the hospital lab and that was the wrong lab for many of the people In the IV rooms I saw quite a few dentist that were sick and with mystery illness it was typically heavy metal poisoning, and yet others and hidden dental issues leaking virulent strains in the body making them sick and never mattered if they had MRI, panoramic scans it failed to show that the jaw bone had hole in it, because enough bone had not rotted away yet for it to be captured on a scan,. A dental can do a Vitality test surprise! Which has helped some people located and identify a dead tooth 70% of mystery illness are dental related according to chronic illness expert Klinghardt so that is yet another reason why and MD might fail to diagnosis you it is not his field . I had mold poisoning it took me three years to get completely well it to two years to get a diagnosis I was checked for Lyme ten times and I thank God that was not what I had .But mold poisoning looks like like Lyme . Why is that a ER doc is clueless about mold mycotoxin poisoning it can be fatal it is serious! Also if your sick get full blood work up insist on an vitamins check for everything and micronutrient check , My very expensive genius doctor told me that some people need more that the standard amount of B12 to feel well . Get the 23 and me test it helps. Do a food elimination diet 100% more accurate than a scratch test, keep a diary note everything.you eat, touch smell or even where you go. Also know that Electromagnetic sensitivity is real and it can make you sick . My friend was sick for years finally seen and Naturopathic doctor who figured it out it is real!y if you do research where those special glasses to keep the blue light blocked this effect your body in way you cannot imagine I could write volumes on what I learned.. When you see many MD’s that are not trained to be Dr House then you must become your own doctor .. People that have been ill for a long time and if they are research types they are wealth of knowledge and are a great resource because together we can helps one another , for support , information and all the way to wellness, complete healing and back to happy healthy life.

  • Zeynep

    Hi Charlie, i hope you are well. I too am undiagnosed. My problems started with mild nasuea for months. After that, fatigue, lightheadedness, night sweats, fever, weight loss started. I had so many tests, Ct scans, pet scan. Nothing showed up. Your comments took my attention because my ebv and cmv titers are very high. I have low WBC but just on the border. Do you have a diagnosis now?

  • Tina

    I feel the same. It hurts to feel the loss and the most hurt is losing yourself. I know why I deal for the name of the mystery and it’s for recognition that I am not crazy. Maybe a possible solution to one day feeling better. I wish you many blessings. One day to findthenane and the start healing.

  • Bec

    Have they looked into pseudotumor cerebri, also known as idopathetic intracranial hypertension?

  • Sominex83

    I’m wondering if most of these people don’t have EDS of some sort. Hypermobile joints are in some ways a good thing as they are a huge outward warning sign.

  • wings

    Oh how well I know how some of your are feeling. I too am having trouble getting people to believe I do have things going on with me, but the ones that are bothering me most are doctors. There are degenerative discs in my neck & lumbar spine, both have a neural foraminal narrowing where the nerve is either irritated or impinged.
    I get a sunburn sensation in my legs, sometimes pins/needles. The muscles in the top of my shoulders become sore & tight. I’m told that surgery on the spine is very risky, which I understand, but I fail to understand how/why what’s going on is allowed to run amok in my body. I get a light-headed sensation at times, or a headache at the back of my head. Very soon after breakfast I have nausea. The headache & nausea can last anywhere from an hr or so, to several hours, then suddenly disappear. Out of a week, I feel ill for 4 of those days. I have burning sensations in areas of my body,
    & the burning feels as though it’s on the inside, at least I can’t feel it on my outer skin.
    Sometimes my stomach will burn (on the inside), yes I get GERD but it’s controlled, or so I think. I also get a burning feeling in my upper chest, just behind the breastbone, or a feeling that something’s there & it’s swelling. This too can last for an hr or several hours then disappear. Sometimes I can feel it starting, but I can’t stop it.
    Some mornings when I get up, I’m ok, then within a minute or so, I feel as though there’s a very light buzzing sensation in my torso, arms & legs. This is the best way to describe it. Scary..yes..but that’s the way it is. I’ve had a CT scan on my head because of pulsatile tinnitus. The result?..You guessed it..normal. My bloodwork always comes back fine..all tests have been fine, therefore my doctor blames things on what’s going on in my spine. Again he stresses that surgery is too risky.
    I have a Mental Health advocate who helps me quite a bit, but I only see her once a month. My friends are a good support system, but one works all day & I don’t want to burden her with my problems. Another friend is a space cadet when it comes to health issues, so she just sits there with a spacy look on her face, & offers nothing. I get to the point where I want to simply take a handful of bp pills..
    yes end it all..because I’m at the point where coping is more & more difficult for me.
    I don’t know how to get to the bottom of my problems, & fail to understand just ‘why’ doctors can’t find what’s wrong with me. Is is truly what’s going on in the spine, or is that just an excuse…I don’t know.

  • Wendy Jone

    This made me almost cry… Sonja, I’m part of your sisterhood.

    When it all first started, I kept pushing, thinking sooner
    or later it would be solved. And now I’m stuck–I’ve proven I’m “fine”.

    Oh God. What I’d give for an actual diagnosis besides Somatic
    Disorder (from Dr. HeadUpHerHiney), and a real treatment plan. While in the best shape of my life, after doing headstands one night in 2006 as part of my yoga routine and feeling a sharp pain in my neck, I woke the next morning with an intense headache and a balance problem that feels a little like being on a floating
    dock, and cognitive impairment. Nearly eleven years of tests and $$$$$. Some
    docs say the MRI shows issues; others deny there’s anything of note.
    Chiropractors do their best, but it’s 24/7 pain… A 24/7 headache for over a decade.

    I don’t miss much work despite high stress there, and I work hard at
    trying to still have fun (yes, really). I feel like I’m getting close to
    breaking. But…what good would breaking do, except confirm Dr.
    HeadUpHerHiney’s belief that I’m “delusional” and “exaggerating” and
    that my pain is “vague and minor”? (She put those words, along with the SD “diagnosis”, in a report and mailed it to me, after telling me in person that my problem was “stress”.)

  • MalGal

    In 2009, I had a large ovarian tumor removed. It was cancerous, but it was a rare form that didn’t spread. I had major surgery that involved cutting the abdominal area from just underneath the breast bone to all the way down past my belly button. As expected, it took a while to recover after the surgery. I had nausea for a week, and then I felt fine. Since I still had one ovary left, my husband and I planned for a baby. I got pregnant in the later part of 2010. We have a little girl. Sometimes I look at her sweet face and try not to cry because she’s so precious to me. During the pregnancy, I had extreme nausea the entire time (constant). I expected that after my child was born, I would “get my body back” (meaning, my nausea would go away). Well, it never did. I could barely function. I ended up being bedridden when my child was six months old, so my mother took care of her for a while. I had suffered a vertigo attack that left me vomiting half the night. I was in the hospital but then sent home. The nausea continued, as did the dizziness. Eventually, I found out I had iron-deficiency anemia (I found this out by demanding a test, as the doctor did not suggest it, and he even discouraged it). He was surprised when the test came back stating I had very low iron. I took iron pills, while helped with the headaches (yes, I had those, too), and eventually the dizziness improved (although it never completely went away). I also had an upper endoscopy, and it showed that I had wearing away of my esophagus. Medicine didn’t help, so I eventually opted to have reflux surgery (Nissen fundoplicaton). I noticed only slight improvement. The nausea is almost constant to this day. I have tried pills, diet, you name it. I can never seem to get rid of this nausea. It’s affected my quality of life for the past six years. I could deal with this for a limited period of time, but if I am to live for 50 years more (I’m 38 now), I cannot imagine it. I cannot fathom spending the rest of my life in constant suffering. Lately, I’ve been suicidal about it. I cry daily and think about ending my life. If only I could get rid of the nausea, my life would be great! I have a family and work I love (I work at home)! But, I miss out on so much
    because of my sickness. I can’t go anywhere (constant nausea is debilitating, plus the car ride makes it worse). I can’t fully enjoy anything. The only thing that gives me “relief” is when I am asleep and dreaming and don’t fully
    “remember” yet how horribly I feel. I don’t know what else to do. I have seen so many doctors. All they do is give me a new medicine to try, which does not help. I do take an anti-anxiety drug (amitriptyline) before bed. That helps my
    anxiety some, but it does nothing for the nausea. I keep having thoughts about dying, going to heaven, and finally being free of my nausea. It makes me cry every time I think about it. I don’t want to leave my family, but I also don’t
    want a life full of constant suffering. I know that life isn’t supposed to be 100% great all the time, and I don’t expect that. But this is just too much! I cry so much every day that sometimes I can’t even breathe. I have a gun and think about using it to end the suffering. I see people on TV and outside that feel well and are happy and smiling. I wish that could be me. With constant nausea, it can’t be. Please, if there’s anyone out there who is dealing with chronic digestive issues (like nausea) or other issues and would like to become online friends, let me know. I would love to have an online pen-pal to chat with. Contact me at [email protected].

  • παιδί του Θεού

    Sounds like maybe fibro?? Have you had that mentioned to you?

  • παιδί του Θεού

    Doctors irritate me to the core. Our bill is so high I reckon over $1000 from countless efforts at the same doctors trying to get a diagnosis and help. While the time (my GP) he smirks and smiles at us and tells me it is just anxiety..and you see on his Facebook his trips to restaurants and other ventures, while I lay in bed crying in pain nearly every day. I have tried other doctors there at the same practice…even worse than him lucky to get blood pressure done. Would like to go elsewhere but it is impossible for me to even just “shop around” you need to enrol at a new practice with forms of I.d .

  • παιδί του Θεού

    America is lucky they can get scans so easily. To get a CT in my country or well..for me personally is impossible. In ER they don’t do CT scans. Maybe it is my age and risks but X-rays are the routine not CT’s. I am trying to get a CT but they won’t do it despite my severe chest pain. It is so severe I am in pain mostly all day and can’t function. I was diagnosed with a hiatus hernia several months ago but the level of pain I am under and other symptoms is more suggestive of a PE or other illnesses. They just laugh at me think I’m a hypochondriac I think. Maybe it is just my age and risks but at my doctors surgery I am unable to even get cough medicine. I say I am in severe pain they smile and say “oh well, just eat better, lose weight” and hey won’t take out my hernia because it is “too small’ and my doctor just smirks like he likes that I am in pain. Think they are quite heartless people these doctors. I am meant to suffer. Spent hundreds upon hundreds past year and a half going to doctors. Nothing helps. Took me over a year to even get the endoscopy which discovered my hernia to start with my doctor just said ridiculous stuff like “oh it is just anxiety” “just eat better” and then got paid $44 and sent me out the door. Kept saying the same stuff until February this year from March last year till I got he endoscopy in May or June,

  • Esther Joan

    Have you heard about MCAS? A lot of ppl suffer from it, but it goes largely undiagnosed because docs are not learned about it and because it’s such a stealthy illness whose main symptom is “unpredicatbility” as far as how it may act out in the body. (sometimes acts like allergy, but testing says you have no allergy, can feel like athsma, or panic attacks, or hives or GI issues, brain fog etc..) A book called “Never Bet Against Occam” by Dr Afrin was the best book I’ve bought. I take it with me to doc apts so I can help educate them about my “undiagnosed” condition.

  • Esther Joan

    Have you hear of a condition called MCAS? I bought a book called “Never Bet Against Occam” by Dr Afrin. Very interesting about hidden illness. I take this book with me to doc appointments now, to help educate them. (I’m ill with undiagnosed illness..)

  • Jordan Herrera

    Thinking about you

  • Anna Elizabeth

    I understand, I’m giving up a job I worked super hard to get because I’ve been so sick lately but no diagnosis– as far as others are concerned, ‘nothing’ is wrong with me. I feel for you. Try joining the facebook group “Chronic Illness Support: For Fabulous Spoonie Warriors!”

  • Anna Elizabeth

    I’ve been undiagnosed my entire life… I was finally doing better earlier this year due to a change in diet, and I thought “Finally, I can have a life, and be normal…” …but then major amounts of stress has led to a flare-up so bad, I decided to quit my brand new full-time job, and live with my parents while I get my life back on track. I feel like a total failure. Sometimes I wonder if it’s worth it to continue to go to ‘experts’ who don’t understand what this is like.

  • Jordan Herrera

    Im now in this world. Suicide seems like a very good choice at this point. I need to wait till my parents die and I couldnt bear to do that to them, but this is driving me….. scratch that its drove me insane.

    FYI

    Not a refreshing sleep – WORSE PART
    pains (lymph nodes)
    Shooting pains
    aches
    burning muscles
    skin issues
    slightly blurry vision
    headaches
    waves of muscle twitching
    Shaking hands
    Congnative imparement.
    Night sweats
    muscle weakness – i remember caryying 6-8 shopping bag from the car to save trips now i really struugle with one hevery bag. cant lift it above my head.

    Shortyl after fever ended I had a HEP C jab, not sure if that made any dif

    When this first started. I have a fever for three days and was super ichy. then the pains started

    I got a small (2cm diamiter) sore by my knee, disapear very quickly.

    To me its a cleaver virus this has yet to be discover. DONT SAY THAT TO A DOCTOR THEY KNOW BEST 😛

    So angry with the lack of support for ANYONE in the NHS.

    Like the rest of you, i take comfort in knowing there are other pple out there in a similar position.

    Sorry for the speelling, was hard enoguh to focus my brain to right this in the first place

  • Jerry

    They will mock us until they get sick. Then they will beg us for forgiveness!

  • EE Z

    Your crutches are making it worse? How so? On the shoulders? Have you looked into Ehlers-Danlos Syndrome? That often has hip manifestations.

  • EE Z

    Hi,

    I’m not the person you replied to but I just wanted to say keep reaching out to others online and don’t give up on yourself. If people don’t believe you that is about them, not you. Keep seeking help for yourself. <3

  • EE Z

    Sores in the mouth?

  • EE Z

    >My sick symptoms began literally from one day to the next sitting at my
    computer at work 3 years ago. I remember feeling really sleepy and not
    being able to focus. From there it went downhill. I literally couldn’t
    remember my own address or age or birthday at one point. My job started
    suffering, I couldn’t get up out of bed. Mornings are the worst after
    waking up. I would wake up in the middle of the night for absolutely no
    reason and stay up for hours. If I dared try to fall asleep, I would
    wake up to terrible hypnic jerks. My eyes are inflamed and swollen and
    extremely sensitive to light. Severe lower back pains will creep up on
    occasions to the point I can’t cough without debilitating pain shooting
    up my spine. My muscles and bones hurt oh so bad!!!!

    Have you been evaluated by a neurologist?? I’m wondering if you have MS or something like that.

  • Bri

    Um lets say someone had their gallbladder removed, why would it matter? I have a friend who has been experiencing this for around 2-3 years and i’ve been looking around and i’ve seen nothing, doctors cant find whats wrong with him. You comment caught my eye because he said something about his being removed…. I really need to know whats wrong with him. If i can figure out anything and it’ll help it’d be great.

  • Luis Valdivia

    I Have been feeling some unexplained symptoms, the major one is feeling extremely fatigued and brain fog, to the point that i need to sleep 14 hours and I’m struggling to keep a job, the other symptoms are ramdon back pain, stomach pain light headaches,
    this has been going on for over two years . I been to the ER 6 times and had about 5 specialist , had bloodwork over and over , had cat scans of almost everything , the worse part is that my primary doctor gave up and told me I was depressed. I went back to work but the symptoms are stil the same, i have found a way to deal with the
    fatigue by napping and resting often but I’m not sure if its worth feeling like this , I have young kids that I love and feel like im cheating them by my lack of energy. The last symptom has been throat pain and phlegm for two months. I went to the er and they did an xray of lungs nothing there. I’m gonna see a ENT soon but after so many visits and no answers I feel like I will dye before I get a diognosis.

  • Casandra

    wow i have very similar symptoms to you. I felt like im losing my mind cause no one really believes me. What have youo done so far in terms of testing? Perhaps we can keep in touch and compare notes and see how we can try and help one another. This is my first time reaching out to someone through the internet regarding my health. But I think you would understand me more than anyone else. Also, they too been telling me its anxiety. And I know it’s NOt. It’s so frustrating and scary. Thank you for posting and sharing. Hope to hear from you soon!

  • Michele

    I couldn’t even get a scan, which resulted in misdiagnosis, and then spinal cord injury.

  • Michele

    I was misdiagnosed for 32 years by dozens of doctors. I was told the usual things doctors like to tell patients. I was fat, obese, making it up, just lazy, a dug seeker, crazy, mostly verbally abused and judged. I told every doctor I had spine injections as a teen a paralysis with quad at 30, told them I thought it was my spine. I was told repeatedly, with no test ran, I was too young to have a spine issue. One day I just could not get up from a lying down position because I got dizzy and passed out within minutes. I was already on disability because a do for diagnosed me with fibromyalgia doing a reflex test. I complained to her I did not have fibromyalgia,because I knew way back when I was diagnosed that was a bullshit diagnosis by a lazy doctor to la,y to run a real test. That misdiagnosis followed me from doctor to doctor. I took lots of pills and ended up with a hiatal hernia because the pills are my stomach. Once I was basically bed ridden I was sent to a neurologist. Right away had a spine surgery because I had suffered a very rare occurrence, a non trauma spinal collapse and spinal cord injury. It’s very rare because usually a doctor listens to symptoms and runs appropriate tests. I had 3 spine surgeries in 4 months, almost died, due to a plethora of bad doctors. Now I am seriously disabled with a spinal cord injury, thanks dotors! I was finally properly diagnosed with a serious congenital spinal issue. My current spine team absolutely appalled, my spine surgeon said I am one of the worst cases of medical neglect he has ever seen. My spine doctor calls me a walking miracle because I should be a quad or dead by now. No wonder medical mistakes the 3rd leading cause of death, I was almost a victim myself. I complained to medical licensing board and. Claims “unsubstantiated” which doest surprise me. Health “care” is a joke in this country.

  • JHL

    I know how you feel. I got terribly ill at age 22 and now at 36 they still don’t understand it. Lots of experimental treatments with no success. Family, friends and career vanished out of my life. I too know the feeling of seeing my youth disappear into the abyss of an unexplained illness. It is a long and painful road for us, my friend. For what its worth, you are not alone. Look into the Undiagnosed Disease Program affiliated with NIH. I am. For those of us who have been ill for a decade or more and still somehow survived, this may be our best chance. No matter what, I wish you peace. May we all someday be vindicated!

  • Angela McCrary Price

    Unfortunately I’ve dealt with my fair share of medical problems. I’m convinced now that doctors really have no idea what they’re doing and the patient needs to learn how to advocate for themselves. If they can’t scan you or drawl your blood and find it, chances are you’re pretty screwed. And if they do find it my hat goes off to the radiologist and or lab technician that was on my case. I’m having troubles getting a doctor to step out of their own way even when clearly they have no direction. What most of them fail to remember is the patient is the first and number 1 diagnostic tool. They should always listen and direct based off of that. And although they do have years of medical training and experience, I have 36 years of experience with this body. Hope everybody finds an answer to their healing. God speed my prayers are with all of you.

  • Angela McCrary Price

    Just wondering if you have had your gallbladder removed??

  • Angela McCrary Price

    I’m not sure of the rules on this particular site but if you are able, contact me via Facebook under the same name. Maybe we can research and get some support from one another. Don’t give up on fighting. This didn’t happen from nothing. Something is causing it and it needs to be found.

  • Angela McCrary Price

    So sorry to hear of your pain and troubles. I have had similar symptoms and every test done imaginable. Now I just feel like a lab rat with pain growing in its intensity. I keep searching for answers and if I’m able to come up with anything I’ll certainly reach out to you. Hope this finds you doing well.

  • Annie
  • Lyss Renee

    I know this may be over-said a lot these days but have you tried not eating gluten for a few days or up to a week or so and seeing how you feel? I was in the same kinda position. Since 2010 I began having pains in my legs and throughout my body to the point that it was hard or impossible to walk. I got a back brace and I was about to get my crutches 3 years later when I tried naproxen. (which worked for a month and then I had a horrible reaction to it) Then I got a virus and went back to my pain and finally officially decided to do my experiment of not eating gluten in 2015 and I did not need a wheel chair like I thought I would! Thankfully I can walk again, but I am having trouble at times for some reason.

    I do hope that you figure out what’s going on with you. 🙁

  • Charlie

    one more thing, in my own experience, extreme fatigue, cognitive impairment but being unable sleep and feeling unrested even after a night of sleep, suggest viral activation, cmv or ebv or others; food related especially carb sensitivity suggests candida or other fungal species. i believe they often occur together when the mucosal immune system if the gintract is disrupted.

  • Charlie

    to conitinue (and these are my theories NOT edtablised science), the tremendous proliferation if Cd4 cells in peyers patches in the gi tract sounds like a good thing, but it isn’t. the ratio of cd4 (t helper) to cd8 ( immune effector, cytotoxic) in the gi tract cells is extremely important in battling both latent viruses such as ebv and cmv, as well as preventing the proliferation of pathogenic organisms, ie yeast, on the mucosal wall. these organisms cannot typically invade the wall but they can spin off enormous metabolic waste products and make you very sick. lastly, the chronic immune activation from fighting this proliferation, but being unabe to eradicate it, does stress your adrenals and cause all the problems of “adrenal fatigue”, an illness i alwsys thought was imaginery, until i had it myself. you should probably see a naturopath ( i’m an md myself) but the naturopaths honestly know more about this stuff and are more open minded), might consider stool testing for yeast, and maybe have anti ebv and anti cmv antibodies done, which in my case showed huge elevations in anti cmv and ebv igm but normal igg. A note, none of this should be taken as “medical advice” just observations based on my issues and theories which also started with h pylori.

  • Charlie

    This sounds somewhat similar to how my situstion started. H Pylori is known to be pathogenic and can kill cells of the duodenum. All of these cells can regenerate, except the terminally diffetented immume cells, of the GALT. Studies of HIV patients (who also ecperience GALT destruction) show that these cells do not regenerate, unlike peripheral immune cells which can regenerate well. What’s worse, is that the M cells lining the proximal small bowel are essentially not visualized well on biopsies. I am a physician myself, (also undiagnosed), and i’ve come to nelieve that in some cases destruction of m cells innthe duodenumen can cause a feedback loop where there can be a massive proliferation of cd4 cells throughout the gi tract, in intrepithelial lymphocytes and peyers patches.

  • Kamomile

    i feel so hopeless right now. i have been having strange troubling symptoms for months now and my dr is convinced i just have anxiety and should see a psych. granted i feel i could benefit from therapy but i seriously doubt all my symptoms are all in my head. oh how i wish they were! i would be so happy if this really were just anxiety or even just an odd form of depression because at least those dont directly kill you. im so scared i have ms, or some form of cancer but i dont even know! also it really doesnt help that the symptoms come and go, there are at least 3 different types of symptoms (difficulty breathing, migrating pain, episodes of severe flu like symptoms) and those come and go, some may happen at the same time as one other symptom or by itself. also i have these episodes where i feel extremely fatigued like i have the flu, my head feels foggy and i feel faint, nauseous and weak, and it gradually over the course of minutes will make me feel like im gonna pass out any second even if im lying down. it gets worse if i close my eyes and often causes me to feel like my head is spinning. i made the mistake of telling my dr that i have had panic attacks and now she just thinks this is panic. i KNOW what a panic attack is like, this is NOT panic. my dr insists there is nothing wrong with me just cause she ran a few tests and they came back negative. im so afraid they are wrong or missed something, or maybe they just havent tested for the right thing yet. its scary and tiresome not knowing what is going on, and not knowing day by day if this is going to get worse or not.

    its gotten to the point where i am actually HOPING its fibromyalgia, yeah it can be severe and debilitating but its treatable and lots of people live fairly decent lives. at least it doesnt kill you…..does it? idk but honestly if i must have something i just dont want it to be something serious that i could die from,

  • Danish Dynamite

    I figured I’ll join this “confession section” as well. My invisible illness started about 3 years ago. It began like a regular food poisoning. Out of nowhere (no symptoms before that fatal day) I started having incredible fatigue, debilitating stomach/gut, pain, constant diarrhea. I figured it would stop in a few days but it never went away. Other symptoms came with time, dry mouth, dandruff, almost every food intolerance imaginable, fainting, weight loss, strength loss (I am a former almost champion weightlifter), headaches, distorted vision, Gerd, chest pain, loss of appetite, partial loss of smell and taste. I may have omitted some but you get the point. I tried everything, been to 20+ doctors, had so many procedures I can barely count (colonoscopies, endoscopies, every blood test imaginable, allergy tests, sibo, fructose and other intolerances etc) and all negative. I have a “slight” gut dysbiosis so I was pumped full of probiotics many times with no change (slightly less diarrhea, but everything else the same). Other than that, I’ve been labeled as NOT SICK. Which is kinda funny, cause I spent most my days lying in bed with excruciating pain, nausea and a soul-crushing depression. I went from a promising career in strength sports to a man barely able to get up from his bed, desperately trying to pass the next semester in college studying shit he got no talent nor penchant for. I have lost everything and everyone. With my hopes and dreams crushed I can only look forward to more years of boredom, pain, depression and struggle to survive another day for no reason whatsoever. And somehow what bothers me the most now, is that I haven’t the faintest idea what sort of a malicious malady is torturing my body and mind. At this point I just hope for a swift, painless and unexpected death.

  • Ame

    Those are my EXACT symptoms. I had Cushings from an adrenal tumor over 10 years ago. And before you think: “Gee, well, it’s obvious why you are sick!” I recovered from this debilitating illness a long time ago and I felt great for a long while. I recovered my energy, I was working out and all tests conclusively agreed my system was back to normal. My sick symptoms began literally from one day to the next sitting at my computer at work 3 years ago. I remember feeling really sleepy and not being able to focus. From there it went downhill. I literally couldn’t remember my own address or age or birthday at one point. My job started suffering, I couldn’t get up out of bed. Mornings are the worst after waking up. I would wake up in the middle of the night for absolutely no reason and stay up for hours. If I dared try to fall asleep, I would wake up to terrible hypnic jerks. My eyes are inflamed and swollen and extremely sensitive to light. Severe lower back pains will creep up on occasions to the point I can’t cough without debilitating pain shooting up my spine. My muscles and bones hurt oh so bad!!!! It’s probably my number one complaint. No amount of calcium/Vit D or protein supplementing has helped me!!! The inflammatory pain creeps up my face and mandible making me dizzy at times. It made no sense because after my Cushings was cured, I had none of that pain. I have chronic bowel inflammation. Everything causes me gasses, bloating, diarrhea: gluten or no gluten. I have chronic acid reflux. The only time some of my digestive symptoms subside including a bit of the fatigue is when I stop eating for a couple of days. Flush my system out. When I eat again, I’m back to my symptoms. I have been tested for a number of diseases of the bowels. I have been given a battery on hormonal tests by my endo for Addison’s disease, thyroid, everything is normal. I’ve done cortisol stim tests, 24hr urine collection. My gastroenterologist found H Pylori in my stomach. Very common. Eradicated it, symptoms still persist. After an upper endoscopy and some pathology samples, she says I’m normal.

    I’m only 31yrs old and I’ve given up. I’m just ready to die.

  • Chloe Smith

    Hi, I am a 13 year old girl and I have a problem with my hip but doctor’s don’t have a clue what it is. I have had an MRI, several x-rays, 2 ultrasounds and numerous blood tests yet everything has come back normal. I have only had this problem for 10 months but I feel as if it is taking over my life and it is gradually getting worse. I have been given Tramadol, codeine, dihydracodeine, naproxen and all the general pain- killers, but nothing works. It’s a horrible feeling knowing you have this problem yet people don’t believe you as it is not visible. I am currently on crutches with physio and am awaiting a steriod injection but people at school still say I am faking and I do it for attention. But I don’t and I would do anything to do any physical related activity yet they still don’t believe me. I don’t know what is wrong with me and it is getting worse, to the point where nothing helps anymore. My crutches are making it worse and I don’t know what to do. Should I request a wheelchair? What should I do, I feel as if my entire life is falling apart??

  • CK

    When I was 22 my symptoms came on like a tsunami. I had over 52 problems going on from losing to hair, no insomnia, to join pain, to rashes, to mania and depression, to extreme weight loss and fatigue to major hormonal dis-regulation and more. I had been to the doctors and all my tests came back normal, they just offered me antibiotics and anti depressants. From there I took this madness into my own hands and changed my diet and lifestyle 180 degrees. I cut out gluten and dairy first and my monthly cycle returned and I could sleep through the night again than I eventually cut out all grains, beans, refined/processed foods and soy and ended up on the Autoimmune Paleo Protocol. While it’s a restricted diet, my life no longer feels restricted. I feel joy, genuine joy which I hadn’t in years. I feel empowered by my body’s ability to heal itself and put out the flames of inflammation that had been burning for a long time. Don’t give up hope, hope is all we have and from there we have the ability to change what is in our power and transform out lives for the better. If you google Autoimmune Paleo there are tons of resources online. Best of luck to you, friend.

  • Lisa Mathena
  • Diggity

    Lyme test and only have it performed by Igenex Lab in CA. Lyme causes lesions on the brain. Dont let a Dr tell you any lab can test lyme accurately.

  • TK

    Oh my goodness, If I have one more doctor tell me there’s nothing wrong with me and that I am the epitome of health I am gonna lose it! I am experiencing all the same symptoms you guys are…numbness and tingling in arms, hands and legs, fatigue, difficulty sleeping, painful bones and joints, difficulty walking, skin sensitivity, feeling cold, heat sensitivity, migraines and headaches, stomach issues, chest tightness with sharp stabbing pains, dizziness, feeling foggy headed. I mean, come on! MRI shows spots on my brain but that say not MS. Ultrasound, blood work, and XRAY’s…all normal? Really? I’ve dealt with this since 2009 when the (L) side of my ntire body went completely numb! Oh, but I am “normal”. WHATEVER!

  • M

    One simple answer: Read “The Medical Medium: Secrets to Chronic and Mystery Illness and How To Finally Heal” by Anthony William. He changed my life

  • First, get a full panel thyroid test. Then, think parasitic infestation, if no family history of an illness or an injury.

  • See my previous post. It sounds ( possibly ) like a parasitic infection. Maybe picked up while out riding ? If so, the negative health implications from it will probably go on and on, until you treat it ( successfully ). It requires that you have some idea of what it could be. Compile a list of symptoms and begin searching, using them as the title. If something catches your attention, go the the NCBI site and look it up. Then likely, a CBC blood test to test for it’s antibodies will be in order. There is no one test to “search for everything”. You must have some clue as to when it began ( for exposure) , and most importantly what the symptoms are. He could have possibly caused a hernia inside his body, as well. You must go through the process of discerning every symptom and noticing if there has been a progression of them. Then, do your homework. A 10 minute office visit is usually only good for the physicians bank account. Best of luck.

  • I want to tell you guys that most un-diagnosed, or misdiagnosed health issues are the effects of parasites. I do not know all of your symptoms, but try looking up the parasites and check them against your symptoms. Such as Toxoplasmosis, Lyme disease, etc…..This one (Toxoplasmosis) currently infects 1/3 to 1/2 of the global population ( Yes, in the U.S. too. The medical industry loves to write prescriptions for all of it’s individual symptoms, and never look to find the cause.. It is almost always misdiagnosed.) NCBI is a great website. It has most ailments there. Stuff you just won’t find at other places. Search-

    Latent Toxoplasmosis and Human. Then, search these.

    1. NCBI, Effects of Toxoplasma gondii Infection on the Brain. 2.

    NCBI- Toxoplasma gondii, the Immune System, and Suicidal Behavior 3.

    NCBI-Toxoplasmosis A Global Threat 4.

    NCBI-Are There any Relationships between Latent Toxoplasma gondii Infection, Testosterone Elevation, and Risk of Autism Spectrum Disorder? 5.

    The effect of toxoplasmosis on the level of some sex hormones in males blood NCBI-donors in Baghdad. It is a start.

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