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    For all my Lymies out there

    I’m currently working on my book “Predictably Unpredictable”- a book all about my lyme journey and then some.

    I’m searching for anyone who would want to share their story/testimony/transcript- whatever you’d like to call it, so I can include others stories in my book. [I am not using names in this book- as I respect doctors and patients privacy, so you will be given a name for my book]

    If you’re interested, I would LOVE to hear from you. Tell me your story, so I can tell the world. #stopthesilence #ChronicLymeDisease #Babesiosis #LymeWarrior #Bartonella #InvisibleIllness

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    Jan 6, 2023

    Today I’m feeling quite awful. My brain feels in the clouds, anxiety level ridiculous, left side weakness. My extremities don’t want to do what I tell them to do. There’s a misfire between my brain and my body. I’m just under 2 months of being ill for 5 years. 5 years. Our youngest daughter just turned 5. She doesn’t even know who I am. The real me. The not sick me. The fun me. The active me.

    I’m feeling so down, hopeless, sad, guilty. A burden.

    I’ve been able to stay somewhat positive- as much as one can with this disease- but 5 years? That’s a big chunk of time. Our oldest son has 5 years of the real me. Our middle child had 3 and our youngest had zero.

    It’s wild to me how an illness can- for me- in a matter for just 3 days take over your entire life. Your whole being. Your soul.

    I’m exhausted. I’m so sick of being sick. #ChronicLymeDisease #Babesiosis #Bartonella #LymeDisease #InvisibleIllness #LymeWarrior

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    Reminding myself how strong my body is

    I fought for a diagnosis for years! Bladder pain, pelvic pain, labrum tear in the hip, balance problems, speech issues, memory issues, skin manifestations, muscle and joint pain and stiffness, motor movement problems, depression, anxiety, vision problems, loss of libido, hypothyroidism, 1 cervical and 2 thoracic disc hernations, stage 2 spine degeneration... the list went and still goes on and on.

    While I was getting sicker and sicker and literally felt like I was dying, I looked completely “normal” to everyone else, except my boyfriend who basically watched my whither away. I became a shell of who I was. I was known as strong, fit, bad ass, a weight lifter, a runner. I was teaching group fitness classs, teaching personal training sessions, running an online fitness program, exercising 5+ days a week, hiking, camping, playing soccer...

    Then all of a sudden, I developed severe bladder issues that brought me to the ER repeatedly, ran through multiple urologists and pelvic floor therapists (2016). I was diagnosed with interstitial cystitis and pelvic floor dysfunction (2017). Not too long later, I tore the labrum in my right hip. Throughout that year (2018), we tried rehabbing my hip and pelvic floor, but any progress we made was halted by reoccurring lower back pain. I never experienced back pain in my life and now, I couldn’t get rid of it. By the end of 2018, in a matter of months, I could hardly walk without feeling like I would fall, my hands would tremor, the words coming out of my mouth would get mixed up and make no sense, my skin felt like ants were crawling all over me, I developed extreme neck tightness, lower back and hip pain, leg numbness / heaviness, dizziness, vision nearly blacking out then tunneling back in, constipation worsened, endless food intolerances. So much was happening at once and I had no clue why. I saw so many doctors and no one would give me a good answer / one I would accept.

    I joined a million Facebook groups, especially ones pertaining to #InterstitialCystitis . That’s when I read about stealth infections like mycoplasma, #Bartonella , and Lyme disease. I went to my primary care and begged him to run a Lyme disease test on me. It came back equivocal, which to the conventional / allopathic medicine world meant it was negative. I learned from these FB groups that when it comes to the Lyme disease tests (Elisa and western blot), they are extremely inaccurate and not reliable. There are a lot of false negatives. So, knowing this I found a Lyme literate practitioner and brought this test to her. In the Lyme disease world, equivocal is a positive result. But I also had all the clinical symptoms of a Lyme disease patient. So, finally 3 years later I was diagnosed with #LymeDisease . At first I was relieved to be validated, that I wasn’t “crazy” and I wasn’t “blowing things out of proportion”. But soon, I learned how controversial, expensive, and difficult this disease is.

    So now, almost 4 years after my #Diagnosis I am still treating, but in a very different way than when I first started. Lots of supplements, medications, sauna, diet change, etc. The treatments can be very overwhelming at times. I still mourn the person I used to be...

    But I HAVE to remind myself that I am strong. My body is strong, my mind is strong. And being of this disease- I AM LYME DISEASE STRONG. 💚

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    I Will Heal #LymeDisease #Bartonella #Babesiosis #ChronicLymeDisease

    Just came across this pic from 2012. I was discovering that healing was not just about my body. Wellness was not just about end of disease. I was (am) not just a body…. This perspective helped me in surprising ways. In retrospect, this maybe would have made a good book cover, maybe, tho I like my artwork on my memoir, Messages on the Mirror, Lovenotes and Lyme. www.donnazfalcone.com/messages-on-the-mirror.html

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    A Rarity...Science Who? #MentalHealth #RareDisease #Babesia #Bartonella #LymeDisease #PsychiatricIllness #MoldPoisoning #NewScience

    For as long as I can remember I haven’t felt good. Anxiety and Depression have always been words I’ve known, and have been overactive in my life. What was once thought of as regular mental illnesses have now been changed.

    Before it was illness from nature vs. nurture but now I see more than the average Joe. I went to a new psychiatrist 6 years ago because no one within a 50mile radius would take me on as a client, I was too much, too many severe psychiatric illnesses. I was finally referred to someone that would take me on. This was like nothing I had experienced in my over decade long search for treatment.
    I walked in and off the bat they wanted medical testing of my body, and let me tell you I was VERY caught off guard. I didn’t understand, why? Why do they want testing of my body when I came in for my brain? My brain is very resistant to medications.

    It started with a urine test, an organic acids test to be specific. They were looking at my intestinal tract and not my brain, but I found out that the two are heavily connected. They call it the gut brain axis and it didn’t stop there. The results were in and they were not good in the slightest.

    Next came all of these blood tests, they even sent my blood to Germany! I became positive for Babesia and Bartonella, two coexisting infections in the Lyme catagory. THATS NOT ALL FOLKS, they also found highly extensive markers for inflammation and MOLD. Moldy blood? Am I being Punk’d? I come to find out that my body has something wrong with it and they don’t know what it truly is, but whatever it is, it’s severely messing with my brain. My body is constantly having an allergic reaction and cannot properly get all of the toxins out of my blood. As of now, they do not know how to proceed without making my psychiatric illnesses 10 fold worse, but at least I have some answers as to why.

    Once you hear these things you start flipping back through your life to think of where this could have come from. I grew up in old homes in the Midwest and it was very common for our basements to flood or be perpetually damp. I mean these are houses built either a few years before 1900 or a decade or two later. My father is also an acute hoarder. It’s not like what you see on television but it’s very similar. Did you know mold can look like dust on old papers? Especially old papers that have been in a damp, most likely some asbestos filled basements? Pro tip: don’t blow the dust off because it is not dust, it is mold, and bad mold at that.

    Then I thought back to when I visited my sister whom I only found out about as a 19 year old, thanks dad. For the record I absolutely adore my sister. I have ALWAYS wanted a sister and the only thing I hold against him is not telling me sooner. Anyways, my sister had a cat that ran away for 3 weeks at 17 years of age. We knew the outlook wasn’t good but oddly enough Azreiel made his way back, but with fleas.
    Who knows what has caused what but damn science, you scary.

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    BARTONELLA

    My BARTONELLA infection has relapsed in my body. I can't handle light, noise, people etc. I can't deal with stepping out my doorstep. I'm trying to cradle myself until I can get my blood work orders in hand and get the results to my doctor. I'm so sad, I feel broken. My husband and family are so supportive, but I'm not ok and I can't get to my doctor fast enough. It's like a siren is going off inside my body and I can't turn it off. Has anyone taken Antibuse for Lyme or coinfections? Any distractions that work for you? #LymeDisease #Bartonella #coinfections

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    Just feeling horrible. #Undiagnosed

    I’ve been shaky and hyper reactive all day today, with horrible tightness in my chest area and throat. Now I haven’t slept all night and my chest area is in crushing tightness and pain. I feel like i can barely take a deep breath. It sucks.
    I also need an alternative test for Lyme/Bartonella besides Igenex because I don’t trust that company. I need a brand doctors trust and don’t give many false positives. I decided, after denying myself for a while, to test again.
    Thanks.

    Just had to vent for a bit.

    #Undiagnosed #Lupus #ChronicIllness #ChronicPain #MyalgicEncephalomyelitis #AutoimmuneDiseases #UndiagnosedIllness #LymeDisease #Bartonella #AutonomicDysfunction #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #ChronicHeadaches #Depression #Anxiety #MentalHealth #MedicalTrauma #Pain

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