Back To The Beginning - Summer 2015

JUNE 2015

THE BITE

As I mulled how and when I would have been bitten by a tick, I recalled removing something squishy from my lower back – as I had sat… outside? At the picnic table?  Couldn’t quite remember, but I knew I had just tossed it aside – didn’t even want to look at it -  which I wouldn’t have done inside the house.  This was roughly the same time after returning from a week of camping on the Cape at the end of June.  No one was there to look at my backside while camping with my two kids and one of their friends.  I had taken quicker showers at the campground; and, come to find out since then,  I don’t always dry my ‘sway back’ well after a shower.  It often remains untouched by a towel, which might have alerted me earlier to a tick that was taking up residence there - had I been a more diligent in my drying.  I’ve also come to learn that ticks can come off easily once their engorged with blood.  Oy.  I hadn’t thought twice about that squishy thing on my back, thinking ticks have to be adhered – stuck to and/or lodged within the human skin with their nasty little saw-like teeth.

The ‘bulls-eye’ on the small of my back doesn't show well in the picture I took.  It was hard to do over my shoulder into the mirror.  But I remember it for what it was: one of the many red blotches that were ALL OVER my body that first two weeks of symptoms, and the one that was more purple and discolored at the edges – like oil does in water, and which had morphed to the shape of the bend in the swayed small of my back: slightly longer and oblong.  Not round.  Some of the red blotches were harder to see, due to a suntan, and there was a large red circle on my left deltoid (shoulder muscle), amongst others.  I took pictures of many of them.

Adding a note here 1/31/18, since I see that this is the most viewed post so far - and realizing that it's not on this post that I was diagnosed with a 'classic case of Lyme Disease' when I visited the Urgent Care Clinic shortly after the symptoms started - and that the 'good news' was that it was '100% curable'.  Yeah, right.  Please see the first post, 'Bit By A Tick', for more on that...I was also diagnosed via a blood test (the second of two, the first being an incorrect PCR test which wouldn't be able to test for Lyme) in September of that year.

JULY & AUGUST 2015

WHAT'S WRONG?

The Doxy I was prescribed at the Urgent Care Clinic kept the Lyme at bay, and certainly helped for the first two weeks, more or less.  I started to feel better.   And then I started to feel worse. 

Since I wasn’t feeling better, I was prescribed a third week of Doxy at the office of my primary care – though not through her; and, with my continued health complaints to an on-call doctor visit at the office of my primary physician, a fourth week was reluctantly prescribed. I didn’t finish that fourth week, because I felt so awful and was very concerned about why I would still be feeling so badly.

In a general state of disorientation, I started to type in a second ‘journal’ – making entries on a laptop:

Thursday, August 6^th, I phoned my primary doctor’s office at CM – concerned that my neck was so stiff and head hurt so much.  Why wasn’t I better?  I’d been taking Doxycycline for over three weeks.  What was wrong?   Rather than have me come in to the office, I was advised to go to the Emergency Room, them thinking it might be Lyme Meningitis.  My husband came home 20 minutes early from work – agitated at doing so – to take me to the ER at Good Sam. 

The ER Dr. gave me a saline solution for the ‘headache’.  Oy. I wasn’t dehydrated - love to drink water.  That bill cost $1,300.  He also did a PCR test.  I found out later that the PCR is not the correct test to identify Lyme.  Lyme antibodies need to be identified, and they won’t be present during the initial illness.  I was seen at the hospital ER as a woman with a headache. Not helpful at all.  Not accurate.

It was much, much later that I learned about the “Herxheimer” effect:  A toxin is a by-product of the antibiotics killing off the Lyme spirochetes.  The production of this toxin can make a person feel very poorly, before feeling better.  Case studies in the award-winning documentary, “Under Our Skin” discuss this reaction, in the course of treatment.   Most cases in the video document the treatment of people who had gone undiagnosed or misdiagnosed for long periods of time, and who were in much, much worse condition - as a result of the Lyme moving from the initial location of a person’s blood stream, and into the person’s central nervous system.  “Lyme likes viscosity”, J later told me. Viscosity refers to thickness and stickiness. J had lived with undiagnosed Lyme for many years, but doesn’t like to talk about it, because people will think she’s crazy.

I also learned about the shape of the spirochetes, which is like a corkscrew  - as is the Syphillus spirochete - which can make their way into tissue and then be more difficult to eradicate.  Another question for Lyme Disease researchers: Are there other similarities between Lyme and Syphillus?  If so, how does that affect transmission of the disease?

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From Written Journal Entries, 2015 - here similar to how they were originally:

7/23/15 – 1:30 p.m.

feel best when I wake up

so obviously need rest

worked in Brockton (ARC) today –

in Plymouth yesterday  -

to NH for 4 days tomorrow with Shirls and Don – breathe the mountain air.

A few days or so before the Lyme symptoms started,

Lying in bed felt a pulsing in my left hip area – internally – was a little strange – like an electrical current cause not a pinpointed muscle spasm – continued at least 20 x

when I just chose to ignore it – lasted @1 ½ secs each – with @ a 1½ secs between each – near lower back Lyme bite?            My chi?

7/30

Finished last of added 3^rd week of Doxy 100 mg. 

2 x/day

          From JW (Nurse Practitioner)

Based on continued light-headedness, visual hypersensitivity, and late day fatigue – headaches still

Felt better after the 1st day (of the third week)   

Fatigued yesterday – mowed lawn

hiked in Franconia Notch

Sat, Sun, Mon w/ Shirls, + Don + Families –

into the Pemi when arrived

Lonesome Lake 1^st day

another good hike somewhere next day

Discovery Trail + Basin last day

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Journal entries continued - ten for the month of August in 2015, as I tried to sort out the persistent symptoms, and efforts to fix what was wrong. It was a constant battle of adding insult to injury.  And, because the illness was rooted in my nervous system, I didn’t look much different. So, there was a lack of support - even in my own household, long story short.

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8/3/15

Eye exam @ Mass Eye + Ear with Dr. O –

He said I have healthy eyes :)

                (given the floaters + ocular migraines

                                                + Lyme)

8/6/15 Th. 

after stopping meds – still not feeling right – from the neck up – light headed waves – achy frontal lobe – kind of like an ongoing low grade brain freeze – tight jaw – vocal chords not coming together – not clear phonation – the ‘paralysis’ (Bels Palsy) people get w/ Lyme?

a cyst(?) erupted base of my head right side – couple days after stopping 3 weeks of antibiotics – somewhat sorish throat (swollen glands?) – hypersensitive eyes (to light – dilation for eye exam probably didn’t help – sunny week)

occasional sweats still – fatigue sets in daily

8/13/15

Thought this might become a journal@ Lyme…but maybe hopefully not.  Went to ID Dr. J at B&W in Boston yesterday.  She’s also looking at my thyroid – seemed surprised that it…. Not considered by my Doc (B – who I haven’t seen since last Dec – always a substitute – she’s cut her hours.)

Dr. J thinks maybe a second virus – West Nile – EEE – not always killers as people think

The Doxy was given at the right time + in the right dose – so the Lyme was hit – But told there is a recovery ‘syndrome’ for Lyme that follows… hmmm…

Back to B&W for visit w/ 2 neurologists tomorrow –

Ellen P taking me w/ her three kids again.  Such a doll!  - Maybe to the beach on Monday.

See notes I typed in case couldn’t talk well enough

-------------------------------

Feels like an ongoing low grade migraine – w/ the nausea

          light hypersensitivity

                   faint

                             head pressure

                                                         vision wiggy

What friend and RN, Lisa G, suggested as a possible manifestation of the Lyme:

- or Thyroid interaction prob

- or mono history   “   “

- or a virus like West Nile

                                                Or EEE

- or the Lyme recovery syndrome

- or a neuro problem – see tomorrow (the Rt. Side occasional explosions at bedtme?!)

8/13 - 5:30 p.m.

White knuckled driving to Providence bad enough w/ the “migraine” – but also SO MUCH TRAFFIC + so many poor drivers – O! M! G!

Sunny, clear day - @ 80

ions energizing people or something

Tried to pass an 18 wheeler trash holding truck that was dumping stuff along the way – he’s weaving from lane to lane – flying – etc….. even the truck drivers were bad.

Much better on the way back.

Still have the migraine –

Visited Simpson Spring in am - + again w/Graham in pm –

an oasis of health and antiquity in Easton...

Oldest US Bottling Co 

restored areas of the factory

Still make sodas + bottle water

have vendors w/ health related foods, etc.

met Chris + Jim – said "no CVS" in am when we talked

then Dan, Matt, Max + Renee in pm – Renee with long term immune problems related to Lyme

8/15/15

To neurologists at Brigham + Womens yesterday – Ellen P drove again w/ Benjamin, Beth + Olivia in tow.

Dr. B, a B&W neuro intern, examined me

Then spoke w/ Dr. L + they both then came in –

Dr. L not concerned @ my lightheadedness

+ dizziness – more so the headache + my need to wear sunglasses inside

Couldn’t remember Bill Clinton’s 1^st name (?! OMG!) or 1^st of 3 items (Apple, Typewriter, Newspaper) when asked to recall later

A  T  N was what I did to try and remember

Having to go very slowly to process request to hold up 2 fingers – then point at Dr. after point to the door

Some other things similar to time w/ ID Dr Wed. – eg pushing limbs in various directions away from force - + following finger w/ eyes

Long story short – Being treated for a Static migraine – been 3 weeks + that’s after 5 weeks of Lyme

(2 weeks sick – 3 weeks treated + recovering) – so Prednisone pack for a week that tapers off

Hope this is it –

     Only test not back yet that matters is West Nile Virus – others negative e.g. Babesiosis.

otherwise could still be meningitis? – maybe steroids can address that too – (had them for acute asthma - Should be ok – after Doxy now, tho).

said they could do spinal tap yesterday – but that comes with a severe headache could result (up to weeks long) – have to be supine + fully hydrated to heal from it – 2 days

And need to go to DC next week for Clara’s 1^st year @ AU

Supposed to call them next week at B+W to touch base before leaving

8/19/15 

Paloma is 18 today :)

Music Therapy Programs.

Came home very dizzy yesterday from Plymouth yesterday – had 9:00 (Eaton 1:1), 10:00 (Alden Group) + 11:00 (Adults group)

Almost fainted – sat in dark room a bit – hard to find @ Plymouth RHCC

Not going in today – precarious driving this way…

Had student summer 'camp' + rescheduled Seniors from last week – can’t do it.

Withdrew from all church committees/events early this morning – returning to work is my priority – (so no tone chimes :(, choir, Peace vigil, music committee or prison’s Reading Fathers L )

It is what it is...

Went to Horseneck Beach Mon – Rob called last minute from work – said he’d drive – otherwise Clara was going to – She was very upset that I’m choosing what to do + what to pay for…healthwise.

I said, while we were swimming, that I didn’t want to put the ‘ixnay’ on everything for the summer.

Had told her earlier that I’m used to plugging along – from commitment to commitment – how I was raised + expected to be – a workaholic –

I said she could intervene and tell me to relax (she said before that I should relax)

So yesterday she told me to take a nap

I rested – then we played cards in bed.  She was winning for a while - then I got a good hand…. J

3 hours later

Assessed where my head is at by driving to grocery store next town over – oy – thought I was a little better (guess I am more or less) but definitely have the visual wigginess still going + swooshing head things – especially in the bright flippin’ sun!

8/22/15, 5:05 pm

 Been riding to DC since 9:15 am – Rob driving – very            sunny – head hurts a little -  took last prednisone

Hoping I have an improved head by our return Wednesday – after dropping Clara to 1^st year @ AU – staying w/ Jim + Susan 3 nights.

8/25/15 – Tues, am.

In Springfield, VA – heading out by 9 –

1^st day w/out coffee in …. 10 yrs? when stopped 

nursing Graham.

Had a couple sips of Rob’s coffee yesterday – within minutes (less?) felt it go to my frontal lobe – swooshing my head. 

Head felt best it’s been for a short time last night – in car – raining – no bright lights

Sunny again today

ground ice packs (Jim made, then me) felt good on my head at night – meninges swollen?

8/26/15

 Did I write this already?

Stopping coffee – since my head hurts anyway – etc –

yesterday 1^st day off it

coffee literally makes my head swoosh within minutes

now

Still have coke + tea

Glad I know what an ocular migraine is like – so that these symptoms make sense – vision wiggy…head achy – it’s just the lengthy duration now  -

The eye exam post-Lyme didn’t help – need better glasses + also sunglasses to help with this – but the dilation did a number on me…It’s like I haven’t recovered from that.

8/30/15

Told R., from now on, after 6 chores in a day, I’m done. (Then I still made lunch for them…oy)

But the 2 dozen chores/day while he watches TV for his ‘down time’ are done.

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What follows are chronological symptoms written in preparation for my first visit to an Infectious Disease (ID) doctor. It was important to write things down and retype it, since I couldn’t talk very well.  I’d lose my train of thought, not recall everything I’d experienced when asked, twist my syllables, and then feel even worse – depleted and need to close my eyes and/or lie down because of the stress of it all.  I can understand why people with Lyme have seizures – get physiologically and neurologically overwhelmed and the body gets ‘zapped’.

This initial visit to an ID Dr. was a problem, because Dr. K-P turned out to be a Dr. of Internal Medicine.  The Business Office of CM called to apologize, as it was the Primary Care office there that had referred me to Dr. K-P – where I was barely able to stand up as the woman behind the counter chatted on the phone, was rude when I expressed a need to see someone, and couldn’t have cared less what my situation was. I wasn’t sure I could drive anywhere from there – even home, a few miles South.  Every sentence I had to speak drained me further.  But people can be so oblivious.

I did get home - but really shouldn't have been driving; and I guess that this is what ‘Type A’ personalities do.  Not thrilled with being a Type A. It just is what it is.

This chronology of symptoms was also brought to a visit with an ID Dr (JJ) at B&W Hospital a few days later. A friend works there in a separate department, and was able to help set up an appointment - thank God - based on my FaceBook post:  “Dr’s referral to the ER with concerns about Lyme Meningitis. At Good Sam now… Please send out good health prayers my way….  Good, Good, Good! Good Vibrations!”.  Thank God for friends.

I’d made an appointment with a second ID Dr nearby Good Samaritan, LL; but it wasn’t until the end of September - and I wasn’t sure if I’d make it until then.  Seriously, what the heck was going on?!

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Monday August 10, 2015

For appt. with Infection Disease Dr. K-P, 312 Bedford St.; Whitman, MA 

(turned out he was Internal Medicine - why referred by Dr. at Compass Medical?? )

New (3rd) Appt. with Compass Tues.

Newest symptoms - last 36 hours - nausea; last 12 hours - aches through knees/give out

Persisting symptoms:

frontal pressure headache

dizziness/head swirls

light-headedness/faint

stiff jaw

throat feels puffy

hypersensitivity to light

wiggly vision

lack of mental clarity (almost ran a red this morning, light, shortly after had sat too long at a

  four-way stop when no one around and then ‘came to’)

mix up beginnings of words

occasional feelings of body fatigue

occasional sweat break out

Symptoms that began very end of June and persisted two weeks:

headache that wouldn’t quit

stiff jaw/hard to bite food from a utensil - one day early on

ocular migraine at start of second week

piercing pain upper right abdomen only one day in first week

alternating night sweats and uncontrollable shivers

Feelings of bodily fatigue

Achy Joints

Right knee started giving out

At visit to Urgent Care at Compass Medical in EB July 9 

rash broke out that day -

  covered on body - red blotches on arms, legs, torso front and back, more than one

  possible ‘bullseye’ - large circle with small lighter center

RX: Prescribed two weeks of 100 mg. Doxycycline 2 x day. - July 9th

Dr. B’s office (JW) prescribed a third week of same when symptoms persisted - primarily above the neck. (Doxi July 9-30th).  (JW now “unavailable” this week.)

*After off of Doxy for the following week, 

symptoms persisted/worsened - primarily above the neck still

*Dr. B’s office advised the ER Thursday, Aug.6th - concerned with Lyme Meningitis.

Aug. 6th Good Samaritan ER Dr. S tested liver function, CT-Scan and blood for platelets, white blood cells... all normal - IV saline for the headache (dehydration was not the problem - RN said my veins were great)

Follow up Aug. 7th at Compass Medical /Dr. P- another prescription of Doxy, which has gotten me through the weekend as I waited for this Monday appointment with Dr. K-P made by Compass Medical on Friday

Waiting 4-5 days (from last Friday) for other tick borne diseases tested at Good Sam. ER Aug. 6th...                   Ehrlichiosis?                  Babesiosis?               Others

Call with CD receptionist today had many ‘pending’ blood tests in the file from Good Sam ER

Learned from someone who had similar persisting symptoms that a combination of Doxy, Zithromax and Atovaquone got rid of the persisting protozoa....

  

Why didn’t any doctor prescribe that for me? – ever?

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Thanks for reading.

Please feel free to share or forward.

Until next time... 

Peace and good health to you and yours.

--Lisa