Good description of Lymies?

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Traveler
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Date Joined May 2007
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   Posted 10/3/2009 9:24 AM (GMT -6)   
Hi All!
I have now read many times that:
Lyme Disease patients may be as ill as people with congestive heart failure AND
in as much pain as post-op patients.

Anyone else seeing this??

I know nothing of just how ill those with congestive heart failure are, but I imagine it's kind of bad. Fortunately, that is something I have not had to deal with, although I know many Lymies have heart issues.
- Traveler
"Conditions": Lyme Disease, STARI, RMSF, Hashimoto's Thyroiditis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


CajunGrl
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   Posted 10/3/2009 10:03 AM (GMT -6)   
I think some of us may be as sick as chemo patients.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Traveler
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   Posted 10/3/2009 10:15 AM (GMT -6)   
I know I feel that ill!
- Traveler
"Conditions": Lyme Disease, STARI, RMSF, Hashimoto's Thyroiditis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


CajunGrl
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Date Joined Mar 2009
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   Posted 10/3/2009 10:18 AM (GMT -6)   
I do too. Especially this week for some reason. My legs are giving me even more trouble and my entire body hurts. Blah! I feel like I have the flu x's 10!
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Traveler
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Total Posts : 35743
   Posted 10/3/2009 10:30 AM (GMT -6)   
I'm beginning to believe that the changing weather is to blame for now - the high & low pressure systems moving through HAS to put xtra stress on our bodies!

Although, we do have a new moon coming on the 18th - so at least my excuses are beginning to get a little variety now!!!
- Traveler
"Conditions": Lyme Disease, STARI, RMSF, Hashimoto's Thyroiditis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


CajunGrl
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   Posted 10/3/2009 10:51 AM (GMT -6)   
Girl, my brain feels like mush, lol. I haven't had bad brain fog in a while. I have no clue how I'm going to remember everything we had saved in the newbie section.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Traveler
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Date Joined May 2007
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   Posted 10/3/2009 11:09 AM (GMT -6)   
good thing there's a bunch of us!!! smilewinkgrin
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.
- Traveler
"Conditions": Lyme Disease, STARI, RMSF, Hashimoto's Thyroiditis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


CajunGrl
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Date Joined Mar 2009
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   Posted 10/3/2009 11:11 AM (GMT -6)   
I know, right? lol
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Nicky D
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Date Joined Jun 2009
Total Posts : 361
   Posted 10/3/2009 12:04 PM (GMT -6)   
Trav- one of the studies brought up in the IDSA hearing measured quality of life of lyme patients, and that was what was placed them with congestive heart failure and post-op patients. As for chemo- some of the drug combos people are on are just as toxic as chemo, unfortunately.

CG- I'm sure you'll have lots of help from all the other people who can remember what was in the newbie information. Not me though- my brain is mush as well today!

CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 10/3/2009 12:18 PM (GMT -6)   
lol Thanks Nicky.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


JELAINEP
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Date Joined Sep 2007
Total Posts : 2017
   Posted 10/3/2009 2:42 PM (GMT -6)   
This site continues to amaze me.... most of us were extremely high functioning, had really good jobs, loved family and life and time off... and a lot of us seemed to have traveled quite a bit. And then we get hit with Lyme disease and our highly productive and wonderful lives are ripped out from underneath us. And the IDSA doctors say that after 2-4 weeks of Doxycycline we are "cured" from LD and if we continue to be sick, then we must have an underlying psychological problem..... HUH??????

There is NO secondary gain from having Lyme disease. I have no idea what my life will look like if I ever get "cured" from LD.... I just know it won't look like the life I lost.... A great job making great $$$. recently married (18 months at the time I got sick), new car, new condo, traveling to Europe.... and then WHAMO, it's gone..... overnight, it's gone.

I would like my "new" life to include painting daily (I'm an artist wannabe, I even have my own studio... which I never use because I'm too sick), going back to school, keeping up a nice household, traveling with my husband again (so he doesn't have to go alone or with one of his grown daughters), having friends again, losing 40 pounds, AND becoming a Lyme Disease activist... showing up for rallys and demonstrating in front of the CDC, etc.!!!!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
10/01- Igenex and CDC LD positive
Rx's: Wellbutrin 300, Paxil 60, Xanax 5, Acidophilus, Invanz IV, possibly Gammaglobulin, Flagyl, HBOT  
 


Willowrose
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Date Joined Oct 2009
Total Posts : 699
   Posted 10/3/2009 5:58 PM (GMT -6)   
Jelainep,

Yeah. How perfectly you voiced the loss so many of us have experienced as a result of having Lyme disease. I used to be a teacher, a hiker, a gym rat and now I am a Lyme patient. At least for now that is my primary focus. I'm with you - ready to take a stand and if that means demonstrating in front of the CDC, bring it on.

Rose

Traveler
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Date Joined May 2007
Total Posts : 35743
   Posted 10/3/2009 9:03 PM (GMT -6)   
I've believed that in general, Jelaine is right. It's the active, life loving people that are being 'struck' with this. I was a horse trainer before my kids arrived - then was a single mom, home schooled them on a semi-sufficient farm. Now? I'm a Lymie. I still love to garden, but my gardens are pretty pathetic now. I have learned to do 'sit-down' things - but none of them are a passion, like life once was.
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.
- Traveler
"Conditions": Lyme Disease, STARI, RMSF, Hashimoto's Thyroiditis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).

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