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 Posted by Need Lots of Help (Member # 18603) on :
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
Posted by Dekrator48 (Member # 18239) on :
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.
Posted by lymemommy (Member # 12495) on :
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
Posted by hurtingramma (Member # 7770) on :
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.
Posted by ping (Member # 6974) on :
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"
Posted by Lymetoo (Member # 743) on :
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.
Posted by lymeinhell (Member # 4622) on :
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).
Posted by ThatColorGreen (Member # 16016) on :
hey guys, thanks for all the responses.
its always nice to hear of improvement
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~
Posted by jt345 (Member # 19638) on :
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)
Posted by Lymetoo (Member # 743) on :
Hey, lymeinhell.. we share an anniversary! November??
Posted by lpkayak (Member # 5230) on :
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
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