Topic: please sign in if you started treatment before 1998
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i hope someone responds
i really feel a need to connect with others who have been fighting this like me for 10 yrs or more
i'm 59. i know my brain is affected-and i act a little alzeimer-like. but i am still reasonably aware of reality. still fighting. and still hoping for a better tomorrow.
i have found in other parts of my life i don't "get" younger people's humor and parts of their speech. it happens with all my kids (ages 25-40)
it happens on tv shows and movies...
and it has been happening here for a year or more...
i just don't understand SOME of the new language, treatments, docs etc
AND I DON'T REALLY WANT TO! i am limited on how much info i can take in and deal with. i want to be able to pick and choose---and not waste time and energy wading thru tons of info to get to what is important.
so-i am not telling the newer, younger people to go away. i am just saying-could the older people check in here? i know you are here-some of you anyway. but maybe you feel like me and don't post anymore. i'd just like an easy to get to place to talk with those i understand.
i miss you. i feel like this is a totally different site than it used to be.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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bettyg
Unregistered
posted
finally got my CORRECT diagnosis 35 yrs. late, 4.5 yrs. ago, so i don't qualify for your question.
i do know that 10 yrs. plus would be folks like:
TINCUP, and the rest of names have escaped me! if i knew them! uffda... so up we go searching for more members like you kayak!
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Hi Ipkayak,
I finally got dx in 1999 after collapsing in 1983. I noticed you mentioned a while ago in another post that your hands were swollen.
3yrs ago my hands were very swollen and red, I had cuts all over my hands.
They are almost back to normal after treatment. The cuts were from parasites coming thru.
As I cleared out the infection that was/is sitting in the small intestine(bells palsy of the gut)the swelling in my hands is almost gone.
I also had very bad neuro Lyme. What current treatment are you on? Sorry you are having a hard time,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
I have been battling this since about 1997 and was finally dx'd in 1999. They did treat me for about 3 months and then they said that I was "cured" despite all of my lingering symptoms.
I have never been the same since and have relapsed this past year. You are not alone!
-------------------- Lisa Duffy Western MA Posts: 14 | From Springfield, MA | Registered: Jun 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yo ho Kayak..
I think I qualify for the 10 year club.
A thought...
A number of the "golden" (heaven forbid I say OLD) Lyme patients are involved in projects and activism, so although they are around, they don't post as often. I miss seeing them here too.
You said.. "i have found in other parts of my life i don't "get" younger people's humor and parts of their speech. it happens with all my kids (ages 25-40)."
I had to laugh. I was in the local burger joint the other day and there were 5-6 youngin's working there.. and I was the only customer at the time.
One standing next to me said something like "yo de mix in this can gives a jolt. It's awesome."
Others responded as if that were "normal" speech and I had NO clue what they were talking about.
I just smiled and acted as if I were right in there too.
And for the life of me I can't figure out what is so funny about Seinfeld and also some of the newer comedians that are real popular.
??
As for here on the board... I do see younger and new folks here more often and don't always "get" what they are saying. And they don't "get" me. For example.... I've just had to explain a post I wrote several times and they had to try to figure out what I was saying.
So dear one.. it isn't just you.
BTW- Have you looked into having occupational or speech therapy?
It helps a lot with basic skills we have lost after years of infection. It is't designed to help understand the younger generation.. or to get you a job... but it may help settle (for lack of a better word) your mind and activities.
I'll be off line for a while but when I return please contact me if you need anything.
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
ohhhh! some answers. i'm not alone!
tincup-see ya when you get back. your post had pigwit and i laughing.
and everyone else...thanks for answering!
my story is posted on here all over the place-but a quickie is:
probably had many tick bites my whole life-we used to camp at montalk-the end of long island, and i was born in a city in nj but grew up in ct and soiuthern nh and maine.
i had undx learning disabilities-chronic sinus and low blood sugar as child.
also early joint pain-beginning at 16.
in 83-84 i started having a specific pain under my right shoulder blade-near the spine. it was so bad, when i got home from work as a gym teacher (60 mile commute) i could not sit down to dinner with my young family like i wanted to because of the pain. i had to sit in a recliner to get away form the pain.
everything else in my life was finally working out-i had a good job, horses in my barn, two toddlers and two older kids, and a husband with a job. we were in hudson valley of ny-just west of lyme ct. i routinely scraped hundreds of engorged ticks off horses and didn't thnk anything of it. evryone was doing the same. vets were not alarmed. just another bug-like deer flys and mosquitoes and fleas to deal with.
pain spread to hands and balls of feet. i started going to docs. first said RA-but a year later when test did not turn pos changed it to fibromyalgia. i knew it was lyme because this little old lady-GW-would go around to shopping centers and outdoor stores with her table and info on lyme-she kept saying the docs don't know about it but it is real.
i went to westchester med and yale. both told me i did not have lyme.
my 3 yr old son-very active-one day said he couldn't walk cuz his feet hurt. i found a dead mouse under his bed and figured a tick had gotten off the mouse and bit him...he tested pos and was tx for 3 mos until he tested neg again. his sister tested neg but got 2 weeks abx anyway cuz she slept in same room. (i was still nursing her...so she was getting it from me anyway)
time went on. i lived in pain. tried to be a good mom-good wife-work hard-took care of mom with "early abnormal onset dementia"
it was hard-a nd my searching for answers to the pain ended up in a separation leading to divorce. then i had a car accident(94)-got rear-ended by a truck and i was in small car. got bad whiplash. bad vertigo. couldn't talk right. kids had to go live with him. i was out of work a total of 18 months. everyone thought it was "all in my head"--which it was...but they thought i couldn't be so sick from that kind of accident...i'm sure the ketes were having a field day.
then a year later-95-my 10 yr old daughter-straight A student who didn't like gym cuz "it hurt" started refusing to get up for school. school said it was behavior prob. i knew how much she loved school so decided to take her to the "wierd" doc in town because non of the othr docs thought she was sick...just spoiled. she tested very pos on igenex luat. had a year of tx and a yr of detox and has gone on to finish college and isin grad school(not totally symptom free-but surviving and in denial of lyme-thats a whole other topic)
as soon as she started tx i got the luat and tested very pos for lyme, babs and erlich
this llmd is still tx and very busy and involved with ilads and othe stuff-autism, cardiac, adhd etc.
my first yr of tx was a waste-i was a difficult case-to sort out lyme and brain injury from car accident etc. he was new at tx lyme and made some mistakes in dosage etc-also went over board in alt stuff and i just couldn't do it all
in 98 i went to the conference at bard college near red hook ny. after that ilads started. i stayed for the whole thing and chose one of the llmds to b tx me. (dr L)
he was more abx oriented and kept really good records-more organized. got me 80% better in 2 yrs-then i continued to improve for a yr of detox
i maintained a number of years on paud'arc and other herbs. not 100% but was riding-competing again and much better.
in 2005 i was hurt at work-work was hard anyway-difficult kids. but i was hit and got another whiplash injury. it put me way back. i became disabled and took and early retirement.
i did a lot of tx for things NOT lyme and did not get back to lyme tx until the last 6 months. it was too complicatee when getting knees replaced and probably 10 other surgeries-
now i am on rifampin and cortef...and a bunch of supps.
and for two years i am living with a lymie i met on here. my kids are all independent-doing ok.
my ex had his hip replaced in his 30's and is living with his new wife who got parkinsons early. no comment. he has been in denial the whole time-it makes it hard to get the kids to stop steroids for sore throats and take their lyme seriously.
my life is ok. i don't ever expect to be cured. but i do want to ride more-even if it is just trail rides. and get back in my kayak. i haven't been able to do it alone since my knees were replaced.
making a new life with a lymie is interesting. at least he doesn't get upset when i hurt and can't find words and lose everything etc. we do understand our problems related to lyme. but it isn't easy...sometimes we both have bad days together...sometimes its really hard. but having someone know it is NOT all in your head is really, really helpful.
I'm another over-ten year patient. I was originally diagnosed in '97, or possibly '96, so long ago it's hard to remember without digging through records. My diagnosis came after an acute onset approximately a couple years prior. And, looking back, there were a boat-load of years before that with weird sub-clinical symptoms that came and went, symptoms to which I paid little mind. My diagnosing LLMD thought I've had this in me since I was a kid, but since I was, at the time, in very good physical shape -- long gone now! -- my immune system managed to hold it off.
I started treatment in '97 and slowly most of the acute symptoms cleared, or shuffled around then cleared, but unfortunately they were replaced with chronic symptoms which are equally sucky. Overall, I would have to say that while abx helped initially, in the long run they left me in terrible shape.
So I guess I qualify as a ten-year person, though I have little in common with the old-timers who've managed to maintain some kind of life with continuous use of abx.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
anyone else????? gees i feel the need to talk to some ppl with experience...
blame my grouchy, cynical posts these days on rifampin.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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