we are off to baltimore

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

Re: we are off to baltimore

Post by Jarla » Sat 28 Mar 2009 4:58

Oh thank you for your thoughts on all this.

I just read this now and I will try to write more later but I have to get to bed now, but I wanted to let you know I had read it!

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

Re: we are off to baltimore

Post by Jarla » Mon 30 Mar 2009 22:41

OK, more awake finally! It was a hectic weekend. We lost our electricity for most of Sunday with the big midwest storm.

I remember having mouth sores as a kid, but I have no idea if they were more frequent than normal. I'd get them on the corners of my lips and on the insides of my cheeks. I also had chicken pox inside my mouth. I still get mild sores every few weeks or so, I think. I tend not to be very aware of my symptoms, which is why I probably had Lyme for 15 years before I got diagnosed. Like, most people, if they have hard lymph nodes the size of small marbles in their groin, will start freaking out. I had them for years and years and never thought much of them.

I really think as well that fibro is connected to an infection like Lyme or something viral. But for some reason doctors who specialize in fibro don't usually want to consider that. A fibro specialist screamed at me that I did not have Lyme, but I did.

itsy
Posts: 786
Joined: Mon 29 Oct 2007 21:03

Re: we are off to baltimore

Post by itsy » Fri 3 Apr 2009 16:19

Hi Jarla...

I think we have chatted before on the enigma site. How the heck are you doing?

Anywhooo....

My daughter and I have EDS as well. Verified by a geneticist just this week. If it weren't for Fin getting the correct dx, I probably never would have (not to say I don't have Lyme as well...you bet I do) and certainly my kid would not have.

I actually have chicken pox scars in my lungs for adult pox.

I was lucky to have an LLMD who had lyme and now my daughter's diagnosing geneticist has EDS.

her joints, other than her hands and feet, and very mildly effected than goodness. So she is not a candidate to have arthritis from it till post 40 years old. Her early intervention orthodontics will help that (though she is mouth sore prone) pallet issue. And the Orthodontist promised he would learn about EDS to make sure he is doing everything correct.

Her biggest problem are the IBS symptoms, which are just going to be managed by her primary ped specialist.

What's funny...you say LYME and docs look at you like you are a nutbar. You say EDS and they pay attention immediately....lol. I don't know where one stops and the other starts. I do think though it left me at higher risk for the lyme arthritis and neuropathies and the dysautonomia. But I don't know that I will ever know the difference. I just always knew I was different from other lymies because somethings for me are waaaaay better than other people face and some things are waaaay worse. And I had weidnesses that no other lymies (other than fin) seemed to deal with. So I will be eternally grateful to her for this because now I do not have to sit and wonder what I passed onto my kid that clearly wasn't lyme, and she will be able to live her life with a real diagnosis so that people don't treat her like she is a nut.

Here are a few links to get you started.


Hypermobile (NIH funded paper)
http://www.ncbi.nlm.nih.gov/bookshelf/b ... &part=eds3

Classical

http://www.ncbi.nlm.nih.gov/bookshelf/b ... e&part=eds

Hypermobile and classical large study
http://www.ehlersdanlos.ca/prev.htm

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

Re: we are off to baltimore

Post by Fin24 » Fri 3 Apr 2009 18:32

can only pop in for a brief addition
try google SCHOLAR and use the phrase
heterozygous hereditary connective tissue disorders

many CT disorders arent even 'EDS' apparently

also switch the word " heterozygous" with "mixed" and re search again

lots come up that are all very informative and pertinent

since CT is all over the body and affects all functions it makes sense that there will be a lot of varieties of malfunction too

Itsy
its only by sharing info that we all can get further in our paths to better health so I consider the info I shared with you to be " part of the job" of being a human being !!

also here is a NEW wrinkle with overlapping sx of Lyme and CT crap:
parathyroid--as a result or even coinicdental to the Lyme
look at these articles for sx etc!!! all it takes is a double blood test ( Calcium and PTH--quest uses a green or yellow top plus lavender top tubes)

http://www.parathyroid.com

F

itsy
Posts: 786
Joined: Mon 29 Oct 2007 21:03

Re: we are off to baltimore

Post by itsy » Sat 4 Apr 2009 14:47

I have looked at parathyroid a while back when my teeth got involved and I was dealing with hypothyroidism. I think the endocrinologist checked that in maybe 2002 pre lyme dx.

But I do think its important to have it looked at.

I tried to email you this week, fin, did you get it?

I will do those other searches because I am interested...when I have time to search.

I have the flu right now and my already fuzzy brain is even fuzzier than usual.

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

Re: we are off to baltimore

Post by Fin24 » Sat 4 Apr 2009 19:59

behind on emails---due to the visual blindness episodes and vertigo as well ( they think I blew out my final third circular canal--CT related---and that blew my balance/equilibrium that I was self rehabbing)which alos means my last 20% left hearing all gone too now along with numb EAR and neck and cheek same side so its central nerves re Lyme in addition

the parathyorid has NOTHING to do with thyroid--even endocrin. make that error---and most dont even check it

it lies against and behind the thyroid--its a positional name only

its not even in the pituitary feedback loop
its kidney/calcium/PTH loop

try www.parathyorid.com

you need a PTH at same time as calcium to check it and then kidney fx tests to make sure the parathyroid isnt secondary to kidney junk

Ill get to some more emails soon
F

itsy
Posts: 786
Joined: Mon 29 Oct 2007 21:03

Re: we are off to baltimore

Post by itsy » Thu 9 Apr 2009 13:24

Fin24 wrote:behind on emails---due to the visual blindness episodes and vertigo as well ( they think I blew out my final third circular canal--CT related---and that blew my balance/equilibrium that I was self rehabbing)which alos means my last 20% left hearing all gone too now along with numb EAR and neck and cheek same side so its central nerves re Lyme in addition

the parathyorid has NOTHING to do with thyroid--even endocrin. make that error---and most dont even check it

it lies against and behind the thyroid--its a positional name only

its not even in the pituitary feedback loop
its kidney/calcium/PTH loop

try http://www.parathyorid.com

you need a PTH at same time as calcium to check it and then kidney fx tests to make sure the parathyroid isnt secondary to kidney junk

Ill get to some more emails soon
F

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

Re: we are off to baltimore

Post by Fin24 » Thu 9 Apr 2009 23:59

Hi Itsy dear
Im confused--why did you copy my post without comment??

did you forget to add something??

F

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