Babesiosis

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

Medication shortage
#Babesiosis #Bartonella #Medication #PosturalOrthostaticTachycardiaSyndrome #ADHD #CPTSD ##lifelyme #mycoplasma

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

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

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!
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**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 #sjogrens #ChronicLymeDisease #LymeDisease #Babesiosis