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» LymeNet Flash » Questions and Discussion » General Support » If you've had LD over 10 years...

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Author Topic: If you've had LD over 10 years...
ThatColorGreen
LymeNet Contributor
Member # 16016

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If you've had lyme over 10 years, undiagnosed, and later went under a LLMDs treatment, have you found yourself to at least be more cognitive?

I've been sick for nearly my whole life (about 7 or 8 years old). I can't even begin to think what it feels like to be able to think clearly, not be in pain, etc etc.

I guess I'm just looking for hope because I'm so afraid that I'll be stuck like this forever....


Thanks guys

Green
[group hug]

--------------------
...trying to be the coffee bean, not the egg.

Posts: 420 | From East Coast | Registered: Jun 2008  |  IP: Logged | Report this post to a Moderator
Need Lots of Help
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GreenBean...green trying to be the bean!!

I have been sick for 20 years. I have only recently been able to add the cognitive issues to my symptoms list. Like within the last year. The fatigue is my #1 problem.

Now, I know other folks with more nuero lyme have had improvements with cognitive issues with treatment. But, I have only been treating for a few months, so I have not had any improvement at all.

Hey, aren't you starting medical school soon?? We can't have our future LLMD having problems....

Shalome

Posts: 893 | From Florida | Registered: Dec 2008  |  IP: Logged | Report this post to a Moderator
Dekrator48
Frequent Contributor (5K+ posts)
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I had undiagnosed Lyme("fibromyalgia") for 21 years, but I just started treatment 5 weeks ago. I'll have to let you know when I'm further into treatment.

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
lymemommy
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Green,

My hubby has had the classic bart 'stretch marks' since his teen years. He was only diagnosed last year with lyme and bart (tested pos for both). He does not have cognitive symptoms, but does have temper flares/mood swings, particularly since we became parents.

I have had 'bad knees and ankles' aka growing pains, since childhood, chronic knee pain since 1995, I don't seem to sweat like a normal person (I get heat exhaustion instead), since my teen years,

as a young child (around 5) I was (according to my medical records) lethargic, with poor growth (I didn't grow from K thru 2nd grade), prescription vitamins were given at that time, which did wonders (this was back in the early 70's, before lyme was 'discovered'). I don't test pos. for lyme (cd57 of 27 though), but do test pos for 2 strains of bart and myco.

I also do not have cognitive symptoms.

We both grew up and have lived our lives in lyme endemic NJ. I guess you could say that we are both people who have had lyme for a long time, but have remained relatively healthy, with minimal symptoms.

If we hadn't 1. had kids
and
2. had a kid who became very sick with lyme,

We never would have known.

SO for my hubby and I at least, lyme has (probably) been around for over 20 years, but somehow or other, we both dodged the congitive issues bullet.

Hopefully this will improve quickly for you.
kp

Posts: 394 | From tinton falls nj | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
hurtingramma
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I went undiagnosed for years, and once I started treatment, the cognitive stuff did get better.

What helps the most for me is Plaquenil. The other abx don't seem to help with brain stuff.

I have been in treatment, off and on, for over 3 years now.

--------------------
"Few of us can do great things, but all of us can do small things with great love". Mother Theresa

http://www.facebook.com/profile.php?id=1629665573&ref=name

Posts: 938 | From Northeast Kingdom Vermont | Registered: Aug 2005  |  IP: Logged | Report this post to a Moderator
ping
Frequent Contributor (1K+ posts)
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Hi green - I went undiagnosed for 45 years (congenital Lyme), in treatment almost 7 years. Much better than when I started but will never be well enough to suit me. Can't urge people enough to get into treatment FAST! I can do things that some with LD can't; ride horses, deep-sea fish, etc., but still not all that I want. Worst part is the isolation. There's simply no way that someone who doesn't have Lyme will ever understand. Hang in there. I'm convinced there is life here.

ping
"We are more than containrs for Lyme"

--------------------
ping
"We are more than containers for Lyme"

Posts: 1302 | From Back in TX again | Registered: Mar 2005  |  IP: Logged | Report this post to a Moderator
Lymetoo
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I believe I contracted Lyme when I was about 8 yrs old. I'm now 58. I was not dxd until 8 yrs ago.

I think my cognition is better, but then I have age to figure in on this!

All I can tell you is that there is plenty of hope! I've been off meds for 4 1/2 yrs now.

--------------------
--Lymetutu--
Opinions, not medical advice!

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lymeinhell
Frequent Contributor (1K+ posts)
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I got sick at the end of 1994 and did not get treatment until early 2004. My cognition cleared when I treated yeast and detoxed - I suspect I was a walking fungal infection all my life. I was born with athletes foot!

Anyhoo, my cognition is super and I've also been off meds for 4 1/2 years now also. (Yay for Lymetoo!)

It's a long road, but it will get better once you treat the entire problem (which often is not just Lyme).

--------------------
Julie
_ _ ___ _ _
lymeinhell

Blessed are those who expect nothing, for they shall not be disappointed.

Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003  |  IP: Logged | Report this post to a Moderator
ThatColorGreen
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hey guys, thanks for all the responses.

its always nice to hear of improvement [Smile]

Need Lots of Help, I deferred my acceptance to next January (my LLMD thought it would be better to start next year. After starting treatment, I had to agree!!!)

I will keep my journey updated. i'm hoping to have my brain back before I start!!!

thanks again everyone. I appreciate the replies.

Be well.
~Green~

--------------------
...trying to be the coffee bean, not the egg.

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jt345
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From what we know I have had lyme @ babs since 1988,maybe longer,now that I lookback. For me the diease runs in cycles. From pain ,to mind problems,to heart problems. I just started treatment all over again,and I am starting too remember just how hard it can be.

These people here are a great help,stick around.
I wish You luck and health,and God Bless
jt345(appleseed)

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Lymetoo
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Hey, lymeinhell.. we share an anniversary! November??

--------------------
--Lymetutu--
Opinions, not medical advice!

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lpkayak
Honored Contributor (10K+ posts)
Member # 5230

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i was probably sick with lyme my whole life

i knew i had it in 84...but didn't get tx til 97

fatigue and ball of the foot pain were worst symptoms at first

after 3 yrs tx fatigue was gone and rarely comes back-only when starting new abx and herxin

i talught PE 10 yrs on herbs to maintain...then new head trauma made me relapse-have been disabled ever since-don't know how much is head injury or lyme...cog worse

but it is worth living...just different than i planned

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
   

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