we are off to baltimore

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Fin24
Posts: 1699
Joined: Sat 8 Mar 2008 20:14

we are off to baltimore

Post by Fin24 » Wed 18 Mar 2009 22:50

ok 2 days and hopefully Evan and I will have the rest of the puzzle--unless this Dr finds yet another dx--this is how its been

we know about our tick crap but we get odd sx and then shlep to ohio and get dysautonomias confirmed--then he guesses chiari and EDS and so off to NYC to chiari specialist and yes we have that too but also EDS so NOW here we go to the EDS specialist

I HOPE she doesnt find yet another thing to dx and we can finally put it all together

then the only thing left is to evaluate risk vs benefits for me to somehow get from NJ to Cedars Sinai in LA calif by GROUND ( cant fly lest my brains slip into brainstem and the spinal canal under pressure and kill me) to see if the ONE yes ONE person experimenting on spinal dural ectasias in entire U.S. can stop my 3-4 outpockets of spinal covering collecting fluid ( ectasias) which then means the brain slippage may slow or stop .If he does do surgery and I live thru it ( so far he has 60% mortality and only 20% success rates in the survivors)--then That may make me again a candidate for skull removal surgery to lessen the chairi which MAY then lessen many of the overlapping sx we have with the tick crap... gasp take a breath

for evan this EDS consult means evaluating HIS risks for skull recon surgery because HIS chiari is worse than mine per skull shape and size,and he has no spinal pockets confounding things and his CSF flow is very very bad making his neuro sx worse than if he had "just" tick crap

see y'all in about 3 days IF neither or both of us dont end up hospitalized along the way!!!

Ill shout a hello out to cobwebby for all of you while we are in her neck of the woods!!!

Cobwebby
Posts: 1716
Joined: Mon 29 Oct 2007 0:55

Re: we are off to baltimore

Post by Cobwebby » Thu 19 Mar 2009 4:34

Shout real loud too-so I can hear you.
I'm working late Thursday- and Friday going to Elkridge MD for daughter's soccer game. :woohoo:

This is my last year to watch her play-she's a sweeper. No plans to play in college- sigh.

Anyway-back to you, Fin and family- you just might be back in Baltimore for Evan to be evaluated by another world renowned brain surgeon- Dr. Ben Carson at Hopkins.

Hope all goes smoothly for you. I know you won't have much time for site seeing. Where you're going is kind of generic ordinary big townish anyway. Nothing too exciting.

I'll be thinking of you.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

cave76
Posts: 3182
Joined: Sun 12 Aug 2007 2:27

Re: we are off to baltimore

Post by cave76 » Thu 19 Mar 2009 14:56

Talk to you soon, Fin, and good luck!

Cobby, is soft shelled crabs still THE thing in Baltimore? I lived in a hovel in Jessup, MD when my first husband was stationed at Meade. We were too poor to be able to afford eating out so I've never had them.

Cobwebby
Posts: 1716
Joined: Mon 29 Oct 2007 0:55

Re: we are off to baltimore

Post by Cobwebby » Thu 19 Mar 2009 16:09

Holy Crab!
Now you've done it, Cavey.

I'm going to have to plan my route to work to go by the Crab Shack so I can crunch into a tasty soft shell crab. Love them. I'm drooling for one now.

Crabs in any way shape or form are big in maryland. Most people too poor to buy them just wade out into the bay to catch em themselves.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

cave76
Posts: 3182
Joined: Sun 12 Aug 2007 2:27

Re: we are off to baltimore

Post by cave76 » Thu 19 Mar 2009 16:15

Cobby------ THAT'S SO CRUEL!!!!! :evil:

Cobwebby
Posts: 1716
Joined: Mon 29 Oct 2007 0:55

Re: we are off to baltimore

Post by Cobwebby » Thu 19 Mar 2009 16:24

I wish there were some way to eat jellyfish-they're the main deterrent to my sticking my big toe into the water as crab bait.

There is something rather sad about having crabs scuttling across the kithen floor trying to get away from the STEAMER, while toddlers are jumping about squealing in delight. Happens in just about every maryland household sooner or later. Sort of a right of passage.

Have a good one- talk to you later.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

cave76
Posts: 3182
Joined: Sun 12 Aug 2007 2:27

Re: we are off to baltimore

Post by cave76 » Thu 19 Mar 2009 17:26

----- crabs on the floor and toddlers. Funny, but not (grin)---- but kids are innocents. Usually.

We used to go catfishing in the delta (sorta near San Fran area). Catfish are considered by some to be non-edible. But they don't know what they're missing!!!! BEST tasting fish in the world.

They had a tremendous urge to live----- and after being out of the water for a LONG time and put in the sink to skin (not scale) they were still breathing. It almost made me not want to eat them. Almost.

Fin24
Posts: 1699
Joined: Sat 8 Mar 2008 20:14

Re: we are off to baltimore

Post by Fin24 » Sat 21 Mar 2009 17:58

I am baaaccck

cobs wrote
Anyway-back to you, Fin and family- you just might be back in Baltimore for Evan to be evaluated by another world renowned brain surgeon- Dr. Ben Carson at Hopkins.

you must be PSYCHIC--Altho the mame isnt right the referral is--sorta

we DO have to trek back to Hopkins--for me to see a neuro/dural ectasia specialist ( so much closer AND safer travel than to Cedar Sinai in LA) and for Evan to see an immuno who will maybe fight harder for the IVIG even the EDS dr says will help him!!

I told them that for ME to walk into Hopkins the lair of Paul Auwearter would take a LOT
that either they will arrest me for inciting a pro Lyme riot; OR my spirochetes will be so scared theyll run out of me any way they can

can you imagine THAT??? a slime of microscopic Lyme chetes with high pitched screams scooting out of me???

hey maybe thats what I need then after all ;)

the trip wasnt that awful--straight run if you ever care to come visit me, Cobs--95 the whole way
we left at a good time mid morn and made it in about 3 hrs--course the hubs WAS averaging 87 mph
leaving Balti Fri late afternoon ( after an entire day 10-5 at the hospital) we hit traFFIc on 695 AND again at the delaware/Md/Pa cross junction but by the time we were outside Phila it was bearable again on rte 95--homebound took only 3.75 hrs despite traffic

unsure how soon we will get to Hopkins--files need to be sent and reviewed first and then theres my kids UGH aug wedding and we have to decide about our yearly end of spring OHIO trek to the dysauto guy--thats 11 hrs I truly cannt bear and maybe by now he has trained someone, anyone, out east closer to us. I may email him to ask...again

the EDS dr thought that there were still only 3 true dysauto specialists: Vanderbitl , Mayo and our own Dr Grubb at Toledo--sigh

ok--off to catch up on my bouncing emails and rest up the next 2 days!!!
( again THANK you Cobs for the hotel recs and scouting--the Holiday Inn was more than adequate,residential safe area ( altho the serial killer on the loose on the news did shake me a bit), and it was but a few min to "town center" and maybe 10 min to the GBMC!!!
btw if youre ever in Towson--you GOTTA do the Burger and Co. in town!!! FANTASTIC char broiled made to order food and the fries are to DIE for!!!

F

ps unfortunately for us Evan wasnt in the mood for anything crabby, Paul and I are both severely allergic to shellfish and some seafood too so being in the heart of crab country was a waste--sorry

Jarla
Posts: 13
Joined: Fri 5 Dec 2008 21:02

Re: we are off to baltimore

Post by Jarla » Thu 26 Mar 2009 23:30

Fin,

I have you posted elsewhere about EDS and Lyme? This is something I'm rather curious about. I know they have a lot of overlapping symptoms.

Do you think people with EDS are more susceptible to Lyme maybe?

I don't have EDS, but I'm just curious... I guess because I wonder if there are any genetic factors that make some of us more vulnerable to the disease than others.

Fin24
Posts: 1699
Joined: Sat 8 Mar 2008 20:14

Re: we are off to baltimore

Post by Fin24 » Fri 27 Mar 2009 0:06

I try to post the eds related stuff at eds sites but they have me on moderation because no one is allowed to mention the Lyme connection--they feel that Lyme is overdiagnosed ( even the NURSE there) and that mentioning it detracts from keeping others safe

MY feeling is that you should rule it ALL out--Lyme, EDS, Chiari etc and that all can affect each other

and that info must be shared about all things medical that may affect you

here at LNE I may have dropped a few bits of info--not much becsause there isnt much to add of substance really

Dr Francomano is renown expert of EDS and even she says " we dont know" about EDS and other things like Lyme--but that in general having any pre-existing tendency or disorder or deficiency will make all infections, trauma, illness harder to deal with--thats sorta common sense--a healthy person having a heart attack should have it easier to recover than a person who has diabetes and high cholesterol with the same heart damage


the sx overlap comes from and is the same as the fibromyalgia overlap--the Lyme vs fibromyalgia arguments still arent solved--is there ANY finromyalgia that hasnt been from some infection even if viral?? and how many still are Lymies??
if youre inflamed from infection ( even the flu) you will have sx of joint and muscle and fibro pains ( even cartilage like rib ends and sternum)--would you have them without the infection?? maybe, like with CT disorders
would they be better or worse without the pre existing weakness of connective tissue--maybe, either way


what medicine now is: you end up with sx and its almost impossible to say the cause when you have several comorbidants ( coincidentally occuring conditions)--and more than impossible when those comorbs may also be directly causative

like the dysautonomias--many have them without any infection or other illness. Others have the tendency or weakness and an illness triggers it--did the illness CAUSE it--who knows--and still a third set can pinpiont a CAUSE of the dysautonomias--in the end it matter less because the lack of treatment and management means all 3 groups experience similar sx with no help for them

so in the end does it matter???maybe in years when theyre trying to see if any of the pathways can be slowed or stopped before final illness sets in...maybe

EDS is one of a whole range of Connective tissue disorders--and in EDS there are still other subsets.
The most common EDS seems to be joint hypermobility. Since inflammation of joints and tendons and cartilage is already likely, anything added, like from infection, will add to the pains

BUT I havent seen or learned about connections to immunity or having EDS or any other CT disorder making a person more vulnerable or likely to have a harder case of anything.( other than arthritis--which makes sense due to joint overuse)

same with Chiari--many are now found with this due to increased MRI's and looking for it ( its still ignored quite a lot)--there will therefore be those with chiari who catch Lyme and some who dont--will those with chiari and the headaches and neuro sx that are like Lyme be more likely to have a harder case?? probably NOT BUT it may feel like it is due to the additional sx added onto an already dreadful base of sx

and if you cooincidentally have chiari and then get Lyme it will add to an already unbearable set of sx and you may feel even worse than if you had either of the disorders alone.

IMHO its a matter of numbers--with so many cases of Lyme we are now seeing a "lot" of Lymies with diabetes, and Chiari, and EDS etc etc--but not anything much higher than expected in general populations

sometimes its even red car syndrome--when you buy a red car and suddenly ut seems as if EVERYONE has a red car!!

Having eds and other CT issues; having chiari, having anything else makes it harder to diagnose and much harder to gauge treatment failure vs success--how do we know my pains are now from EDS and not from Lyme anymore??
but I dont think there is a susceptibility

BUT here is something I found fascinating but I still cant after 15 yrs find the citations for it
Ive worked with a few Drs with patient education over the years and anecdotally there have been reports of a set of Lymies with history of MOUTH sores--not Herpes--canker, apthous sores--and THAT is one marker for CT issues

well, almost all with those frequent and childhood canker sores also have more chronic and harder to treat Lyme!!! I dont think anyone has connected if its due to immune system function being piggy backed with the same genetics, coincidence, or a true connection that a specific type of CT breakdown carries along with it other biochemical and immune system defects too.

OR it may simply be that with canker sores the normal spirochetes that live in our mouths ( not bad or good guys--theyre just there) enter the blood thru the sores and then our immune system learn to not attack them--they maybe get bored or are confused--theyre not bad guys but theyre in the wrong place and so the immune system learns to let them be

THEN we get a tick bite and new spiro's move in and our immune systems say " howdy neighbor" and dont mount an attack and then Lyme gets deeper and more damaging quicker

thats MY personal theory backed up by NOTHING other than gut feeling and science education
so it may simply be geographical , bad learning,and not some genetic weakness connection

did I even answer your question Jarla???

sorry if I didnt--ask again and Ill try harder

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