Lyme & company to date

I have been sick with Lyme disease, at least two co-infections—Bartonella and Babesiosis—and likely mycoplasma since AT LEAST the summer of 2007, though it took a long time to figure that out.  Known tick bite in August of 2007 – with records from Pri Med to back it up.  I honestly suspect my initial infection may have been summer of 1987 b/c  “Summer flu” doesn’t just happen, and Lyme can lay dormant in a patient’s body for years.  I had a “summer flu” that wasn’t strep in the summer of 1987…..and within 5 months was DXed with hypothyroidism – it was “sluggish” and symptoms improved then.   For a while…. I guess we’ll never know for sure.

Back to 2007

At first my symptoms were manageable…and blamed on other thing…., but in January 2011 my health began steadily declining.   My doctor recently told his phone nurse I was “deathly sick.”

In 2007 I began having symptoms but didn’t know what was wrong. I saw more than 20 doctors over a 7-year-period before finally obtaining a correct diagnosis from my current doctor in May of this year. Labs throughout consistently indicate “lymphocystosis” and other elevated levels of  White Blood Cells and some issues with Red Blood Cells too.

During that time I suffered from (and still suffer from) emotional/mental issues, TIAs, back pain, migrating joint pain, fascia misalignment, vision issues, memory loss and agonizing fatigue and dizziness, plus I developed three leaking heart valves and what looks like RA but isn’t, according to X-rays and blood work alike. For years I managed ADHD, depression and anxiety, but suddenly it became uncontrollable. I also suffer from heat intolerance, irritable bladder, and cognitive and memory problems. I experience massive mood swings that would make you think I’m bipolar, but I’m not (just ADHD). Scratches and cuts heal as if I was diabetic, but I’m not. I also battle constant bronchitis, sinus infections and stomach issues.

During the last four years, some of these 20 days gave me numerous misdiagnoses including:

  • Bi-polar disorder, “muscular issues,” arthritis, fatigue and mono (mono WAS reactivated).
  • I’ve been tested for blood cancers and received a diagnosis of “reactive lymphocytosis,” which was blamed on a mono flare.
  • One neurologist told me that my illness is “in my head,”
  • A former PCP and my first cardiologist both ignored labs indicating infection, instead dismissing my debilitating fatigue and blaming my heart valve leaks on medication.

I knew that something wasn’t right, so I kept pushing for answers.

March 2014 I found a new PCP, functional medicine.  Labs indicated the same issues as well as a genetic mutation called MTHFR mutation – which affects how my body processes folate and vitamins (it doesn’t).  Same gene also contributes to numerous health conditions including but not limited to miscarriages (4) – cervical dysplasia & cervical cancer – it goes on. ( )….Doc’s office told me to take labs with me to pending appointment with new cardiologist on 4/1/14.  So I did.

New cardiologist agreed I was sick (I was just HAPPY he didn’t call me a hypochondriac) and diagnosed infective endocarditis but was unable to get an infectious disease doctor to see me (“Asshats” is a nice term for them).

Researching (on good days) led to fact that Bartonella and Lyme can cause endocarditis. The more research I did, the more it sounded like these were the diseases that had been plaguing me for years, but I couldn’t figure out how I would’ve contracted them. It was an ex-boyfriend who reminded me of a tick bite I’d had in 2007, and review of insurance records pinpointed the date.

Recent research shows that ticks carry hundreds of transmittable pathogens, which explains why so many of us are sick with multiple tick-borne co-infections. I call it “Lyme & company.”

I took my research about Lyme & company to my new PCP and said, “I think I have Lyme disease.” Luckily, he ROCKS and listens to his patients. He reviewed the information I’d brought and agreed that it sounded like my issue.

Due to the inadequate tests for tick-borne disease, he has since run every test possible to rule other conditions in or out, in order to confirm the diagnosis of late-stage Lyme (aka chronic Lyme). The average time from infection with Lyme disease to diagnosis of Lyme disease is five years. It took at least seven years for me to obtain a diagnosis.

My CD 57 (Natural Killer aka NK cells) is “under 20”.  Plus my B cells and T cells were low too. Generally accepted CD 57 NK #’s among the Lyme community are that

  •  < 20 indicates advanced or highly active Lyme disease.
  • 20-60 are indicative of active Lyme disease
  • > 60 start to suggest that the Lyme infection is less active.
  • > 200 is “normal”.

It is the opinion of some doctors that treatment is necessary until the CD57 test score is 150 or above.  The lower the result, the more likely a relapse if treatment is terminated.

According to Lyme specialists

An indirect test is the CD57 test. “CD-57” is a specific group of natural killer cells that are particularly damaged by the Lyme spirochetes. Therefore, if your numbers drop to a certain level, it is an indirect indicator that you may have Lyme disease, because the only known infection to suppress CD57 is that of Borrelia burgdorferi.

Normally, your CD57 value should be over 100. If it’s lower than that, you’re infected with Borrelia. If it’s below 60, you probably have both Borrelia and Mycoplasma, and, most likely, some other co-infections.

(More on the CD 57 here: )

Because of my heart involvement, my insurance company has assured me there will be no issues covering my long-term antibiotics. I am lucky in that regard, unlike scores of other Lyme patients who are forced to pay out of pocket for their treatments or go without. If someone has acne or heart issues—even if induced by tick-borne illness—long-term antibiotic use isn’t a problem, but if you have the bacterial infection known as Lyme disease without these particular issues, the CDC and IDSA throw fits over long-term antibiotic use.

I am well aware of the issues surrounding “super bugs” because one contributed to my mother’s death in 2011, but Lyme slowly reproduces—same as numerous other slow-growing bacterial infections—so short-term courses of antibiotics don’t work unless the disease is in its very early stages. I either take long-term courses of antibiotics or risk dying from congestive heart failure caused by severe aortic regurgitation (AR).  The AR can’t be treated surgically until the infections are cleared. I’ll take my chances with the ABX.

Currently on over $300 worth of supplements to build my immune system and my adrenal system, fix my detox pathways (MTHFR mutation), and “gut health”.  It’s probably closer to $400 worth. Just learned we have to up my methyl folate b/c of Lyme.  (And no – insurance doesn’t cover the supplements but I am going to try).

Gluten-free and sugar-free are a necessity b/c (A) the “bugs” love sugar and (B) the possibility of yeast infections getting into the blood-stream.  I am pending a PICC line insertion and IV ABX.  And lots of DETOXIFICATION to prevent liver failure from high-dose ABX.

But it beats sitting here slowly dying.

Before “Lyme & company” flared full-force in 2011:

I was a successful Grant Writer/Grant Manager for state of AL with excellent evaluations until 2011.  Employment history & job details publicly available on LinkedIn, if you wish to see the complexity of job details that I formerly excelled at.  I literally could pull grant $ out of a hat – because I thought outside the box.  There is an IQ of 147 somewhere in my brain.  Or what’s left it – we don’t know yet.

As far as my personal life…..well i am a totally different person now.  But before….

  • Actively gardened & maintained 5 acre & home from 1998-2010, which I subsequently lost to foreclosure after the huge pay cut from the medical retirement.
  • Love animals & kids.  Pets always & active involvement with kid’ activities until 2011 (niece/nephew, friends’ kids, etc.)
  • Social butterfly until 2011
  • 2010 – Began “Hot Yoga” (Vinyasa) – loved it & was in best health of my life; continued through retirement, after which I could no longer afford it.  I still do some poses to stretch out when able.  I actually think it helped me “detox” from the MTHFR genetic issue (DX in b/c Hot Yoga = dripping sweat.

Now – I am waiting on SSD b/c it was denied.  Most of my family & a lot of my former friends think I am crazy b/c of the flares.  Disowned by some – their loss.  Hell I feel crazy many days. I get lost going places – even with a GPS  – places i have been numerous times before.     And there is no way to estimate the length of treatment necessary or how much permanent damage to my brain and my body.  Other than the heart – we know I’ll need an aortic valve replacement.

  • You don’t HAVE to have the Bull-eye’s rash. 
  • It’s not JUST Lyme (Borelliosis) that you have to worry about.
  • You don’t KNOW you get a bite from a baby – they are as small as sesame seeds.

 And if you DO get a tick-bite:

  • Save it and get the tick tested
  • Get on Doxycycline IMMEDIATELY.
  • Tests are unreliable – even the CDC admits it. 
  • New strains are in the US – but not tested for   

 The typical treatment recommended by CDC idiots is 2 weeks of Doxy – but this article show that it wasn’t enough.    6-8 weeks would be my suggestion

To semi-quote Mandy from the sequel (Emergence) to Under Our Skin (… listen to your body. YOU know when something is wrong. Don’t listen to idiot doctors calling you a hypochondriac (like the neurologist I mentioned). Get copies of your labs so you see what they see.

And ignore people, well meaning or not, who say “that’s part of aging” blah blah. I had a PHOTOGRAPHIC memory. People I worked with compared it to my father’s LMAO. And basically, if I had driven somewhere once, I knew how to get there again (except inside Atlanta lol). Yet I let a “well-meaning” (sarcasm intended) relative convince me that it was normal for me to keep getting lost.. part of aging blah blah

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