what happened to me ( posted by , daughter of Finette who dictated this to her)

[Guest guest]

all reading this have my permission to re-post anywhere you think may help

others!!! and to pass along as well.

What happened to me 7-08: ( with love and thanks to my daughter for her

help in typing and editing this despite her time consuming activities in

anticipation of leaving for Uganda shortly) ALSO thanks to my many Lyme buddies

at www.lymeneteurope.org - especially “caveâ€aka “Dixie†who has very

graciously been posting on my behalf and then phoning me from across the country

just to read the responses to me!!

 

Ill try to explain each facet of what I now know about the interrelated

conditions I suffer from. ( Lyme, dysautonomias, EDS- Ehrlers Danlos Syndrome,

CHIARI. )And later, when improved, I will do my best to untangle the

biology/medicine and/or give you links for more info.

 

I had always been “ double jointedâ€. Flexible. Not exactly a circus freak

but flexible all the same. Not a single Dr remarked about it, ever. Now we know

its EDS- Ehlers-Danlos Syndrome—Joint hypermobility type and maybe vascular

too.Allow me to skip ahead for a bit—Ill return to this, believe me.

 

I always was labelled a “nervous†type A  person deemed “

hyperadrenergicâ€; meaning the simplest provocation would have my adrenals

pumping adrenaline and resulting in huge spurts of high heart rate (

tachycardia), labile hypertension and palpitations as well as nausea from an

assumed “nervous stomachâ€.=0

A

 

I was also classified as anxiety prone due to the medical establishments’ lack

of knowledge and of archaic views which ultimately put the cart before the

horse: they assumed I was nervous which raised my heart rate and caused me to

pump adrenaline which then led to a cascade of many other symptoms. Well, it

turns out that this is backwards—I have biochemical and genetic/familial

glitches in my system that even if perfectly calm and happy, even if dead

asleep, I can for no good reason start pumping adrenaline ( sometimes from DROPS

in blood pressure) which then CAUSES the high heart rate, zooming

pressure,shakes and anxiety due to release of the same brain chemicals that a

true anxiety attack will produce! This = dysautonomia.

 

Autonomic nervous system -http://www.nda.ox.ac.uk/wfsa/html/u05/u05_010.htm

a bit scientific so you can use wiki if you like too.

 

Come to find out years later what I have is “dysautonomiaâ€.  A malfunction

of the autonomic nerv system .I have several types ( all genetically predisposed

and trauma-triggered by the Lyme) meaning I have several glitches in the

feedback system that for most others runs smoothly. I specifically have POTS (

Postural orthostatic tachycardia syndrome) only recently ( last decade or so)

recognized by medical field and still very little known about it: causes and

treatments are all big fat guesses. The many possible causes can be: messages

from the ganglia ( nerve bundles outside the spine) don’t easil

y get to where they need to ( or are misinterpreted or even totally blocked) and

so the body cannot respond properly .OR central nervous system aka the brain

isn’t doing its job, or even that the person gets hypovolemic and less blood

to brain provokes an attack. Guesses as Ive said -with few studying it—as most

Drs still believe its all in our heads ( which it IS I guess—not in that way

though)—the main centers are Vanderbilt Univ Hospital in Tenn; Mayo in Minn (

both very hard to get into UNLESS they have an interest in your case) and a lone

Dr Grubb in Ohio Toledo Medical University ( my Dr). A few Drs around the

country claim to be specialists but their expertise varies more than self

acclaimed LLMDs!

 

 This feedback glitch means that if you are startled ( lets say someone thinks

it highly amusing to sneak up behind you and yell “booâ€)- you immediately

pump adrenaline and a host of other chemicals, your heart rate will zoom, and

all sorts of other sympathetic responses. So far like everyone else—normal.

Then the parasympathetic is supposed to kick in to counteract what is no longer

necessary as the “danger†(real or imagined) has passed. Well, with

dysautonomics this happens either never, too slowly or maybe even with too much

effort—overkill. And then you have a severe opposite effect and you bounce up

and down with heart rates arrhythmic and high/low blood pressure and waves of

nearly passing out ( some of us

often DO pass out). Apparently when I spent those 20-30 minutes standing “on

line†in the school yard feeling more weak and shaky and nauseated it wasn’t

“school phobia†or even “anxiety attacks†as they were wrongly

diagnosed; it was my dysautonomia.!

 

Also, I have OI- Orthostatic Intolerance—mostly due to the long term

disability of Lyme—so my body has great difficulty regulating itself when I

stand, sit, go from lying to sitting etc.Normally the body makes fairly quick

adjustments when there is a change in position. More has become known about this

in part due to NASA studies as astronauts return after space travel with a short

term version of dysautonomia!

 

So, then along comes a tick bite, 1989,during my 8th month of third

pregnancy—a time when the immune system is dampened so the fetus isn’t

attacked as “ alienâ€. AND for me then followed 9 months of misdiagnosis as

post partum depression ( starting in my 8th month of pregnancy?????) and

therefore the Lyme was NOT at all being treated and disseminated right into my

heart/nerve conduction as well as my brain and entire nervous system.and Lord

knows where else too.

 

SO I had a weak vulnerable nervous system ( especially the autonomic) AND the

EDS lurking and now a raging spirochete infection. The following years consisted

of allergy to meds ( especially penicillins) and the lack of knowledge re Lyme

which meant I was grossly UNDERtreated and da

mage was going on even while I was in ‘remissionsâ€.

 

Now back to the EDS as promised---the connective tissue is loose ( maybe breaks

down as in early ageing)and the joints and blood vessels are stretchy—so when

blood pools as it usually does in the legs and abdomen its not as easily

squeezed back to the heart—so dysautonomics tend to be those with EDS as

well..a LOT of cross over—the blood pools and brain and core blood volume

drops and we feel faint—then to compensate our bodies tries to increase heart

rates and blood pressures hence the symptoms of hypertension and tachycardia.OR

we get sudden severe low blood pressures--FUBAH

This is very complicated and so I ask anyone with cardio-nervous system symptoms

to please go to the national dysautonomia site www.ndrf.org to learn about this!

And finally 3 yrs ago my dysauto Dr dx me with EDS- I still am uninformed about

this disorder but here is a link: www.ednf.org and a group with these several

conditions plus CHIARI can be found here:

ACM_EDS_TSC/  or in health groups

look for “ ACM EDS TSC†which is Chiari, EDS and tethered cord they cheekily

call the “trifectaâ€

 

OK..so what else with me?? Well for the past 4-5 years Im thinking we now know

what/why I feel this crappy and all meds we try for the dysautonomia aren’t

working and every time the Lyme worsens all else does too and I keep thinking

there has GOT to be so

mething we are missing—and boy was I right!

 

About 3 months ago I was speaking with a fellow dysauto-Lymie and she mentions

“Chiariâ€..well I KNEW both Evan and I had this written on MRIs for years BUT

every time it was either “incidental†as in don’t worry about it OR the

neurologists said “ not an issueâ€..as in its not doing anything—like

reporting a 6th toe.  And often it wasn’t even reported—at all. Now I also

have to go back almost 10 years when a cardiovascular expert also did carotid

studies and spinal MRIs on me and “noticed†an “incidental†finding of

spinal dural ectasias and sacral spinal Tarlov cysts—again, for YEARS—all

Drs  said to ignore this!!! " meaningless blibs "

 

 

What IS Chiari??? Technically its when the cerebellar tonsils (lower rear of

brain) are lower than normal—severe cases are literally having brains too big

for your skull—BUT here’s the kicker—you can have a tiny Chiari and be

absolutely miserable with awful sx and major bad Chiari and feel fine—so its

subjective and variable. Almost ALL cases though, are sensitive to changes in

CSF ( spinal fluid) as it’s a closed system. And anything raising it like LYME

inflammation will of course worsen Chiairi stuff. For info about Chiari:

http://www.chiariinstitute.com/

and http://www.chiariconnectioninternational.com/support.php

 

Well I send all of Evan’s and my

records to The Chiari Institute and await their ok for consult—meanwhile

digging up that they are the world’s expert on this!! And that –get

this—there are a LOT of Chiari patients who are also EDS and dysautonomia

people—and poking around this is NO coincidence!! AND also found out that

while its similar to Lymeland in that over 90% of good neuro’s don’t

“believe†in Chiari causing anything but a funny MRI picture..its not

political due to NIH backing as well as prominent Drs!!!AND there are also cross

diagnoses and wrong dx between neuroLyme and Chiari!! And they see many with

BOTH Lyme and Chiari and are very Lyme friendly!!so info is being passed and

shared ,albeit slowly--NOT censored like the IDSA with Lyme!!

 

PLUS many with borderline Chiari are pushed over the edge as the Lyme may

inflame the brain and its coverings and raise the CSF all putting pressure on

the lower brain and pushing it into the foramen (hole at skull bottom)

compressing the parts of the brain controlling autonomic function!

 

OK so off Evan and I go 2-3 hr drive into Queens/LI ,NYC to the TCI and spend an

entire day in MRI tubes ( almost 2 hours straight for these-and me without ANY

anxiety meds—torture for me)plus

CAT scans and xrays. The CATs were awesome ( and weird)  in that I ended up

with detailed skull pics looking as if they were dug up by an anthropologist!!

 

And the next day the entire day at TCI with exams

and consults revealed the following for each of us:

 

- EVAN—he only has mild EDS thankfully—but he has bad dysautonomia (

probably inherited and Lyme triggered too) and he has very mild Chiari—his

cerebellar tonsils are only about 3mm below normal BUT his skull is slightly

smaller in the rear compartment area and his neuro Lyme inflammation adds to

this—and they saw on MRI CINE –looking at CSF motion- that he is barely

getting any CS fluid to move and its building on his brain causing the headaches

and brain fog etc. So first step for him is Diamox to decrease fluid AND more

aggressive Lyme tx—soon to be decided upon. IF his sx don’t abate enough

then he will indeed need surgery which is removal of parts of skull and

rebuilding it with mesh ( didn’t ask what  material) and/or shunt. we hope

the fluid decrease and the Lyme improving will give him time without needing

surgery-BUT he absolutely needs more aggressive Lyme tx NOW!!

 

Sigh and just when I thought hearing I too will need brain surgery was the WORST

I could hear—well I was WRONG ( an unfamiliar state for me LOL)

 

-ME- MY Chiair is way worse—Im at almost 7 mm and dropping fast. My CSF moves

better than Evan’s but pressure is higher with more severe sx. My vertigo and

balance loss and hearing loss etc ect is almost certainly due to the compression

of brainstem and nerves in area by my cerebellar tonsils BUT my brain has ampl

e room—skull big enough-matter of fact there is an abnormal fluid

filled SPACE between my cerebellum and my cerebrum..and the fluid is so bad my

pituitary is squashed—hence all the endocrine problems now have a reason but

NO CURE—this includes the reactive hypoglycemia..the up and down thyroid so

cant medicate..the screwed up hormones related to menopause—again cant fix due

to irregularity from pituitary...and often pancreatitis, adrenal hormone crap,

aldosterone crap...and on and nauseatingly on. ( at least now we can stop

looking for the endocrine tumor we all suspected)

 

Now WHY you ask cant I have a brain lift /skull reshape too??? Well, remember

that spinal dural ectasia Id been told to IGNORE??? Turns out the EDS connective

tissue breakdown is making the covering over the spine in my lower back bulge

and collect fluid creating a vacuum pulling fluid and my brains out thru my

skull...Now we both  have to do ONE more exam—to see if we also have

“tethered cord†meaning the bottom of the spinal cord is too attached by

fibers to the spine and pulling the brain down—but the MRI says 95% that its

NOT and Ive never been lucky so I figure that 5% aint in the cards for me. IF we

are tethered its spinal surgery to release it—far easier than skull case

reconstruction and far better than my death sentence prognosis—BUT 5%???

and the test for that 5%?? " urodynamics to rule out neurogenic bladder " -catheter

tubes and EMG measu

ring spinal cord to bladder responses--to quote Evan " how did a trip to a

NEUROlogist end with my having to have tubes up my urethra which is UROlogy?? "

only as a 19 yo male his words were a bit more colorful!!

 

Anyway for me it’s the damn bulges causing Chiari ( hydraulics the Drs said)

and the neurosurgeons wont touch them as theyd shred-or worse- again due to

breakdown of tissue/EDS.

There is ONE guy in entire US in Calif  experimenting, at Cedar Sinai I think,

and he injects the bulges to toughen them up and this prevents hopefully more

damage but there is NO cure or fix. and so far he is getting marginal results

and lots of risk too-SO My lower brain is being pulled apart and out my

skull.AND the sx cant be fixed. Eventually I may either choke to death or

suffocate in my sleep ( Ive had 2 episodes this past week alone where I awake

choking or after having dreamed I was drowning--and finally coughed myself

back)  –or a coughing or sneezing or yawning spell will do me in—even the

retching from the vertigo may do it--why?? Well the abdominal pressure ( even

pooping) in normal folks causes increases in CSF pressure to maintain blood to

the brain..in Chiari’s this isn’t good as you can imagine.More pressure more

brain sucking, more sx. Etc etc. OR the spinal bulges will rupture and if the

resulting spinal headaches don’t do me in the lack of covered spinal cord/CSF

fluid not contained will!

 

So I cant plane t

ravel ( pressurized cabins are ng for Chiari and dysauto most times –and for

me—absolutely out) and train may be out too—the Drs at TCI send their pts by

puddle jumper ( that’s 5-10 small crop-duster plane hops by prop engines not

going high enough for pressurization) or car/ambulette—coming from NJ to Calif

that would mean DAYS of hell for me—not sure if worth it—or if I can survive

it.let alone needing escorts by people with some medical knowledge able to get

me help en route.EMT, paramedic, nurse etc

 

Meanwhile the good thing out of all this is I found finally an EDS expert in

Baltimore—since Dr Grubb dx me with this 3 yrs ago Ive emailed dozens

researchers looking for Drs to NO avail--but TCI is connected and as I said sees

pts with overlaps--so after some more tests Ill go there and see what she

says..and if she even clears me to California.

 

 

Oh yeah..the EDS??? Also may affect vascular so from now on I have to be

frequently monitored for aneurisms and aortic ruptures...fun huh???

 

IF all these years theyd not have said the ectasias were “nothing†and to

ignore the Chiari maybe Id not be so far gone but to be fair few knew—even TCI

admitted as little as 3-5 yrs ago even they had no clue about the overlaps and

connections between all these medical issues.so NOTE TO ALL_- have all MRIs

reread for CHIARI and find a specialist if the tiniest chance of this...and have

spinal MRI

s as well and do an EDS checkpoint exam ( you can do this yourself by seeing how

flexible various joints are as per the website or

http://www.ehlersdanlos.ca/diageds.html

 

Final note—the spinal bulges for me are so bad theyve eroded into my spine in

several places and so a fall ( more likely now that I have sudden balance

losses) WILL break my back. Sigh ,quoteth the docs “ matter of when, not

ifâ€.

 

 

And so as a MOM, for me, priority is getting Evan to a more aggressive

LLMD,starting his tx with Diamox and Lyme tx, getting he and I those additional

tests for the Chiari crap and PRAYING something can be done for me...anything,

and having eventually checked--she has/had blue sclera and was a state

finalist in gymnastics--that darn flexibility again--Id like to be well enough

to have ALL gymnastic schools and clubs screen for EDS--theyre taking advantage

of our very flexible kids for medals and yet a good percentage may be at risk!!

All thos “gym-Moms†out there take NOTE—“ just very flexible†may well

be hallmarks of EDS.

 

 funny but now brain surgery doesn’t seem so scary since the

alternative—being UNABLE to have it—is far scarier! It IS still scary as a

parent to think Evan faces it tho’!!

IF you need more info Ill be unable for an unknown while to be of much

help...try emailing me at finrussak@... in case I get a few non spinning

minutes---or call me too

Cave has my phone number as does Mini—if you pass their scrutiny that is LOL-

you can find Cave from her posts on lymeneteurope and by the posts she has done

recently for me on Lyme aid parents and Buhner and NJ Lyme at .

 

And to everyone sending prayers and wishes: THANK you all!!! It’s a never

ending hell made easier by having you all by my side, I just hope when I get to

the end finally, its NOT because Im “gone†,but because Im better!!!

 

And I wish that my misadventures will be of some tiny benefit to others who go

after me along this path of trying to figure out why we aren’t getting well

“enough†and how to get there!!

 

Love to all

Finette