Babesiosis

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    Misunderstood

    Part 3 of 4 okie of the Year in my first Veterinary Distribution position and went on to be a top performer either first or second in the nation every year for 9 years. Finally, an infectious disease physician in Tampa diagnosed me with #LymeDisease and #Babesiosis in 2009. We got to treating as aggressively as possible WHILE I kept working, never imagining I would not get rid of it. I had no safety net, no husband, no opportunity to stop working to treat and not lose everything. I maxed out any contributions to my 401K and saved and saved, put money into retirement knowing Chronic (not regular Lyme) is progressive. Busting my tail with God’s help and blessing through constant pain and sickness, determined not to lose my livelihood, my independence, my future to the disease all the while infusing with antibiotics, having to go to Germany 2 weeks in a hostile, because 15 years ago treating #LymeDisease was illegal, (Lyme treatments were in their infancy in this country) and in the middle of #Stuttering , falling into things, seeing floaters, God gave me the faith to purchase my home, my sanctuary, smartly during the recession, while at a sales meeting in California. All the while I had to pretend I was OK, enduring burning and stabbing in my head that started in 2005, among so many other neurologic issues.

    Having held somewhat of a high profile position because of my dedication and constant activity in the Veterinary Industry, all my body craves and does best with is quiet, peace, no stimulation, and isolation when I need to recover. If I didn’t live through my intense headaches, pains in eyes, face, gums among other symptoms, I wouldn’t live at all but pushing through them every day leaves me exhausted and needing recovery time.

    Finally medical leave after medical leave I voluntarily left my company because I decided my faithful (& BEST) customers deserved a healthy person whose body didn’t keep sending them out of the field on medical leaves. Shockingly, I got denied my disability insurance. After being called a liar by the insurance company and that my Germany treatments where I was ACUTELY ill were falsely described as a vacation, I had to hire a lawyer to win disability for the year. I have files and files of proof and medical records from my serious medical conditions, but add the term #LymeDisease , and it is met with scrutiny because the differentiation between #LymeDisease and Chronic #LymeDisease is not recognized by enough of the world yet. I have dealt with a mountain of #neglect by the medical community and injustice by insurance companies. And all the while having to hide my illness. I would collapse in my car, throw up, be unable to walk out of the blue, stutter, and feel shocks of pain in my head, arm cramps, soreness in ribcage, all while speaking with veterinarians or doing presentations. I had to have surgeries to repair tendons and severely injured my back, neck and knees when I would flare and still do. This started in my TWENTIES, not as I aged. It’s not the same. My heart BREAKS for children afflicted with this nightmare. Against the doctors’ advice and reality, I went back to work and worked four more years in equine health, and equine nutrition. The topmost specialist in Washington DC, Dr. Jemsek, found me to be one of his worst patients and during treatments there I actually had my fourth and final interview for the Equine Nutrition position in the hotel before one of my clinical visits and told my doctor that God wouldn’t bring me this far just to see me fail. My ridiculous optimism served me well until it didn’t. It took me YEARS and YEARS to change my expectations due to the inability to get relief despite all the determination, faith, belief, effort, and WANTING so badly to feel anything resembling “healthy.” I am so glad I did go back to work even though it was not sustainable because I found my true talent, and gift in an area I could use all my veterinary and medical knowledge in as well…Equine Nutrition. During a business lunch with co-workers one day, I told them I push on and make the most of every day because of the hope that I could have a good day. They couldn’t conceive of 90% of days living in a torture chamber. It was so beyond their reality, they thought maybe I was kidding and laughed because I never complained. I don’t blame them. Every time I got established and my executive team and employers told me they didn’t care if I only worked two days a week through my illness, what I produced was great and they would keep me hired, the compan

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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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    Butterfly Kisses. 🦋🦋🦋 #ChronicIllness #ChronicLymeDisease #Babesiosis #LymeWarrior #LymeDisease #butterflykisses

    Living one moment at a time can make hard days easier. Keep an eye out for 🦋 butterfly kisses - a butterfly kiss is a moment you’re glad you got to have. 😊Anything, big or small. Good coffee. A surprise encounter. A belly laugh.

    The thing about butterfly kisses is this: the more you see, the more you see.

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    Once again, attempting to coordinate my medical care

    Hi, I finally took the plunge: this is my first post to the Mighty!

    Until a year ago, I had *finally* managed to find a team of drs. who communicated with one another and supported me in coordinating my complex medical care. (Like so many of you, I had been misdiagnosed for decades, but was so incredibly relieved and grateful for having come upon a team of drs. who understood my case and dxd me properly.)

    Then ... over the past year or so, I learned I have a multitude of additional and rare genetic and congenital health problems. (I've listed some of them below**, because I don't believe the specifics are relevant to my question.)

    While my new team of specialists know one another – they're among a literal handful of specialists who treat complex cases such as mine – they are located in different parts of the US, using different EMRs, following different protocols related to HIPAA-compliant access to my medical records, ranging from moderately accessible to almost completely inaccessible with respect to patient portal messaging, etc. etc.

    On some level I understand, given the ridiculously short amount of time allocated for each appointment by insurance companies, and, the ensuing post-appt. efforts made / required by many drs to, say, finalize documentation of the visit, prescribe Rxs, tests, procedures, etc. As a result I am filled with gratitude for those drs. who spend more than the 15 minute (or so) allocated appointment time adhered to by most drs.

    That said, due to the diversity – in geography, medical record practices (EMRS and patient portals), local/state prescription policies and lab test capacity / availability, etc., etc. – I have not been nearly as successful in coordinating my care of my new crackerjack team of drs.

    Does anyone have any advice for me?

    Thanks so much!
    ~~~~~~~~~~~~~~~~
    **In short: while I'd been diagnosed with hEDS, I learned I had all the accompanying septad dxs and then some; multiple primary immune deficiency diseases (PIDDs); autoinflammatory disease; periodic recurring fever (due to a pathogenic variant of a genetic mutation); mast cell disease; chronic bacterial and viral infections; autoimmune diseases; chronic Lyme, Babesiosis, etc. (I was infected for 1.5 years in 1988, and again for a few months only in 2017, before being dx'd ), autoimmune diseases, etc. etc.

    #ChronicPain #PrimaryImmunodeficiency #EhlersDanlosSyndrome #JointHypermobilitySyndrome #IIH
    #MastCellActivationDisorder #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #ChronicFatigue #DegenerativeDiscDisease #SjogrensSyndrome #ChronicLymeDisease #LymeDisease #Babesiosis

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    Anyone with babesia has a swelling gland like this? #Babesia #Babesiosis #LymeDisease

    Since the first time I got babesia, I had this huge swelling. It’s benign, not dangerous. It’s liquid, the color is like a milk. I had a biopsy for this but, it grows bigger. At first it is 4 cm, now it is 8 cm.

    Anyone experienced this?
    Thank you

    #Babesiosis

    Question

    Best test for #Babesiosis ?

    I was recently diagnosed with an active #Babesiosis infection - via a blood test thru my PCP. Would like to test again before I start some aggressive medical regimen. Any suggestions on the gold standard for #Babesiosis tests? I heard about a company in CA but can’t remember the name. Thank you!!

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    Challenging Health Updates

    Today I announced to the world that my health has declined to the point of needing a #Wheelchair

    I did it through a YouTube video because I feel too weak to deal with how everyone else is going to handle the news.

    I still feel weird about being an ill wellness expert so in one sense, I feel like the video is a little embarrassing yet it felt so necessary to share.

    Today marks day one on this new #healingjourney and I am honestly really excited to have this chair. I’m excited to feel safer and to hopefully be able to get out of the house a little bit more. I never realized that a wheelchair is a symbol of freedom 🤩

    #LivingWithPOTS #Dysautonomia #HypermobileTypeEDS #Babesiosis #coping #SpoonieProblems

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    Feeling Disappointed 😔

    I have had a rough week. Yesterday was my first day out of bed since late Friday afternoon. I am feeling a bit better but the POTS is really challenging for me to adapt to. I am getting a second opinion next Friday so I’m hopeful we will have some sort of plan to address this soon and I will learn more on how to manage it.

    I start every morning with EFT tapping to heal and follow it with the HeartMath meditation 🧘🏻‍♀️ The tapping really helps get my mindset in a better space and that went completely normal but this morning only 3 minutes into the meditation I became severely nauseous from tachycardia.

    I just didn’t expect this. I had no idea sitting in meditation could become something I may not be able to do anymore. I doubt anyone in my life will grasp this but I know the Mighty tribe will!

    I’ve been learning to live with my illnesses the past four years but adding POTS to the mix adds a whole new layer of challenges.

    #LivingWithPOTS #PosturalOrthostaticTachycardiaSyndrome #AutonomicDysfunction #Babesiosis #EhlersDanlosSyndrome #LymeDisease #Spoonie

    Question

    Does anyone get small red flat circles on there skin?


    #Babesiosis

    Question

    How many out there with babesia?

    Been working hard on diagnosis for 6 years. Always told I was crazy. No support from family.
    Herbalist and zyto say babesia; a little research has me thinking it’s even worse than lyme. Life has been miserable. I gave a toddler and I’m a single mom. Got to get better.
    Can’t find much about it. Anyone want to share real life stories, treatments, protocols, fair expectation; what works what doesn’t. Any insight. Please . Not sure how much more misery I can take. Everyone inch of my body is overtakem. Is there hope? Especially if I have to go it alone and I’ve lost everything trying to get help? #Babesiosis #Babesia #LymeDisease #lymes COINFECTIONS #Bartonella #herbalmedicine #zyto #alone #miserable #FlareUps