posted
Hi, I'm new here, and feeling alone in my community.
If anyone else has Lyme in southern Indiana or near Louisville, Kentucky, please PM me to say hello. It would be great to know I'm not the only one.
Well, great for me to make new friends who understand, I mean. Not great that anyone else is going through this.
I got bit on 5/25/2009 in Perry County, Indiana. I got a fever 10 days later. I wondered if it could be Lyme, but put it out of my mind because I didn't have a rash.
The fever and aches lasted a day and a half, and then I got my period, so I ascribed it to the worst PMS I'd ever had in my life and ignored it.
I started to have a stiff neck/shoulders and pain/stiffness in my right hip joint, and sometimes my whole right leg or shoulder, or sometimes my left. I never connected that with the tick bite at the time. I just thought I needed more exercise.
I started needing a nap every evening after work, before I had the energy to make dinner, and my neck hurt a LOT, but just thought I needed more sleep and was doing too much repetitive computer work.
I went on vacation for a couple of weeks, trudged around a bunch of tourist attractions with lots of walking and stairs, and couldn't understand why I was a complete wuss the whole time. My leg joints and muscles ached so much that I walked slower and slower as each day went on, and dreaded the next flight of stairs. I spent 2 days in bed when I got home. I thought I must be getting old. (I'm 42.)
Six weeks after the first fever episode, I got another one that again came on suddenly, went away in a day and a half, and corresponded with PMS, and gave me violent chills.
Then I knew something was wrong and went to my GP and asked if I had Lyme disease. She laughed and said I must have caught a virus, and to go home and take Advil. She said Lyme was extremely rare around here, and she was positive I didn't have it.
I never get colds in the summer, and any cold I get activates my asthma and gives me bronchitis, but this time I didn't have any respiratory symptoms, so I knew it was something different. I knew the second fever episode was the same as the first, returning again. I knew my symptoms started 10 days after the tick bite.
I started reading about Lyme then, and realized that everything that had happened to me, including several things I had ignored or not connected to each other, were completely explained by Lyme, and the timing exactly matched the tick bite. I went back through a journal and realized that I had noted several things that in hindsight must have been Lyme symptoms.
I am a perpetual optimist, and now I had an explanation that made sense, so I set out figuring out how to get myself better.
I read the same story over and over on support boards, of how so many of you went to doctors who ignored your symptoms and insisted you didn't have Lyme, and sent you on a merry wild goose chase of tests and drugs for illnesses you either did not have, or that were caused by Lyme & coinfections.
I was determined not to jump on that merry-go-round, and waste several years getting progressively worse.
I figured out that the tick that bit me was a nymph deer tick, which I had never seen before despite a lot of hiking and a previous visit to the same location where I got bitten.
I insisted on a Lyme test from Quest (insurance mandates I send tests there), which was negative. I convinced my GP to give me antibiotics, and she gave me Ceftin, 500mg 2x/day, for 3 weeks.
Then I read more about how that is insufficient treatment, so I went back and showed her some research, and convinced her to extend the abx to 3 months. By this time she still wasn't convinced that I had Lyme, but at least she had stopped laughing at me for suggesting it.
Then I began a frantic search for an LLMD. The closest one I could find to here was Dr. S. in Hermitage, PA, an 8+ hr. drive, and I had to wait several months for an appointment.
I had flares every few weeks and on and off symptoms while taking Ceftin, but by the end I was starting to feel noticeably better. I had read enough to know to take probiotics the whole time.
The second day after I stopped the Ceftin, all symptoms were back full force again. I read Buhner's book and took a few herbs during the month I had left to wait before my LLMD appt., because I didn't want to sit there doing nothing.
A month later I saw Dr. S., got officially diagnosed, and started doxy, with probiotics and various supplements.
The third day after starting doxy in early December, 2009, I had a definite herx--I felt worse than I had since the tick bite, and everything hurt so much I stayed in bed for 3 days. Then I went back to work but still felt bad for the rest of the week.
Since then my symptoms come and go, so I am not sure how to tell if the doxy is working, but based on that herx, I know it's doing SOMETHING. I am now waiting another month and a half for my next LLMD appt.
My family and friends are trying hard to be supportive, but they really don't understand how I feel physically or the worries I'm going through mentally.
I don't know anyone offline who has Lyme or knows anything about it. Those ticks are swarming out there in southern Indiana, so I can't believe I'm the first or only person they've ever bitten.
I joined this board because I can use some emotional support from people who get it, because I need to hear from people who are farther along than me toward getting well, and because I hope to connect with people with Lyme who live in my area, if there are any.
Thanks for all the information you've all given me while I was lurking. If it weren't for that, I wouldn't have gotten treatment so soon. I have no idea how long the road to recovery will be, but at least I'm on the right road in the right direction.
Everybody have a good day!
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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I live in south-central Indiana, but my tick was from Arkansas;, but I still wanted to respond to your email and let you know that I was told that Lyme disease was non-existent in Arkansas....even though the stupid MD had my CDC-positive result right in front of him! And I have met several folks with Lyme in that state. I have heard this story from folks on this site from many different states-a pat answer for MD's everywhere, I guess. Probably because they aren't testing folks for it so of course they are not treating for it and assume that means it isn't out there!
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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posted
I live in Cleveland but I visited the Cincinnati, Northern Kentucky, and especially the Lousiville area many times before I had the WORST meningitis (that was what they called induced by LYME) of my life. I had almost EXACTLY the same symptoms as you. I also believe I may have gotten lyme back in 1998 but was not treated and it cause optic neuritis for me then (I do not have MS). You can write me if you like I would like to talk. Hope you are feeling a bit better.
-------------------- I'll make the most of it, I'm an extraordinary machine Posts: 43 | From Cleveland | Registered: Dec 2009
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posted
Reading your post again I have had almost the EXACT same experience word for word.
Word for WORD. (minus the Optic Neuritis)
-------------------- I'll make the most of it, I'm an extraordinary machine Posts: 43 | From Cleveland | Registered: Dec 2009
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Light, I laughed because after PMing you, I come across your post that answers my questions to you.
Maybe you won't want/need to hear my story, since you are early into all this. Everyone reacts and heals differently in this illness that's for sure.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Thanks, Laurajeanne, I wrote you back, and I would like to talk.
Thanks, Pam, and I like to hear everyone's story, so I would be glad to hear from you.
At first even the best "success" stories scared the snot out of me, LOL. I really didn't want to have Lyme.
Now I know a lot more about the disease, and have come to terms with it a lot more, and I appreciate that I am not nearly as bad off as some people and way ahead on treatment compared to those who waited years.
So I can listen to anyone's story now. And my heart goes out to all of you who have been struggling with it worse and for longer than me. ((((hugs))))
I hope everybody is having a happy day and feeling as well as they can! And thanks for the replies. It sure does help to have someone to talk to about this.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
I'm in Clarksville IN. Perry county though.. boy I didn't think humans lived there... just deer and ticks. j/k
Posts: 499 | From Indiana | Registered: Oct 2007
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posted
Just wondering if there would be any interest in starting a lyme support group in this area. I would be willing to have it at my house in Louisville. Anyone??
Posts: 366 | From Louisville KY. | Registered: Nov 2003
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Pryorka, there weren't many people in Perry County when I was there, but there was at least one tick, haha.
Everybody have a good day!
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I thought of this so many times in the last 10 years. At times I really believed I was here to do just that.
But no sooner than I would be improving and finding strength to reach out, crap happens and I doubt that I need to do today.
I believe there very well could be a group of at least 10-20 in this area that would TRY to attend. Those of us that have been down this long road, know good today gone tomorrow.
Hey Miss Rene. I've been trying to figure out your screen name for sometime??? I still have your email in my box, just waiting for myself to say let's go drink some coffee. lol
Over the years I met so many (100s) in this area. So don't let anyone tell anyone that lyme & company doesn't exist in this area.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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I agree totally and I do hesitate a little to try and start a group. I guess if there is any interest, I'll give it a go. You are so right, just when you think you can do it something comes up. Lets see if I get any responses. Also, I'm still up for the coffee. We both need a good day at the same time.
Posts: 366 | From Louisville KY. | Registered: Nov 2003
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posted
UP
Posts: 366 | From Louisville KY. | Registered: Nov 2003
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map1131
Frequent Contributor (5K+ posts)
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posted
Hey, Ky & Southern Indiana people. Support group interest?
Rene, maybe with two of us trying to do it...one of us is bound to be having a good day? Well, I guess that could happen!
I don't think it needs to be in anyone's home? Too much work! We could set a date and make it during time of day that is travel friendly like mid-morning or mid-afternoon?
At a restaurant or coffee house. Someplace more centrally located to attending like exit off Interstate 65?
Rene, we'll both try bumping this up and see if there's any response.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Great ideas. So far I know of two folks interested that makes three of us so far. I think there are alot out there interested. Hope they contact one of us.
Posts: 366 | From Louisville KY. | Registered: Nov 2003
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posted
The restaurant or coffee shop sounds like a great plan. Restaurants have a better variety of offerings for people on a low carb diet (like I am, kinda...at least in theory, when I'm not cheating).
I went to a local coffee shop and asked them what they had that did not have sugar, caffeine, artifical sweeteners, flour, or dairy products, and they said, "Bottled water." That was the entire list, LOL. Eventually they made me some decaf tea by brewing the teabag twice and throwing the first cup away.
The point of a support group is, well, support, so nobody should have to do a lot of work and get extra tired just to make it happen. And it's better if it doesn't depend on a particular person having a good day that day, since goodness knows, none of us can plan that in advance.
Weekends are better for me because I am still blessed with the ability to work, which I do during the week.
@Pam, hundreds? Really? I haven't met any until now, but I know they have to be here.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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map1131
Frequent Contributor (5K+ posts)
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posted
Yes, hundreds since this started for me in 98-99. So many I can't even begin to remember all that I've come in contact with.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Bitten Thurs. Sept. 24 2009, Audubon Park Henderson, KY. Started treatment 6 days later. Did alot of research, got good info about Rx dosages and took it to local dr. Was on doxy dble dose for 3 weeks and the regular dose for 3 months. Feel somewhat improved but so tired and weak. Take daily walks with my 14 yr old lab, about half mile, takes 20-30min. Tried very easy yoga 2 months ago, couldn't do even 5 min. Tried today, lasted 15 min. Woohoo! How can I rebuild my strenghth? Feel like a hypochondriac because I'm not improving enough.
Posts: 4 | From Henderson, KY | Registered: Jan 2010
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posted
Glert, I'm sorry to hear of your frustration.
I feel for you, since you got good treatment within 6 days and are still frustrated at not being better.
I suspected Lyme a week after my bite last May, when I first had a fever, but it took me a couple of months to become convinced that's what I had. I started my first round of antibiotics 10 weeks after my tick bite, and felt lucky I had caught it so fast.
My symptoms were and are fairly mild compared to what many people on here describe. I mistakenly assumed that meant they would be easy to get rid of, but they are not.
I took a one-mile walk with some relatives a few weeks ago; first time I had tried it in months. We were walking on a paved, flat path. I was extremely slow, hobbling along with my aching hip joint, which amused and annoyed everyone because it was freezing and windy.
I made it to the destination, though, and nobody got frostbite, so we all had cause to celebrate.
I don't know how to get one's strength back--let me know when you find out. Yoga is great; just build it up gradually. I think that gentle weightlifting would help, if you take it very slow and don't push yourself or do it too often.
I've been told that aerobic exercise can make you worse by lowering your immune system for a day or so, and it will certainly make you tired, so I am not going to push myself to do a lot in that area until I feel better. But those who were athletes before being bitten say that it helps them to get back into their sport.
The main thing is, try a little at a time and see what you can do, and start from there. Rest a lot and don't overdo it, or you may crash energywise and undo previous progress.
If you start your own thread about this under "Medical," you will get more replies.
Good to see another Kentucky person, but I'm sorry you got bit and had to join this group.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
I knew that I had Lymes early because I scratched a "scab" off and it seemed a little hard, so I looked at it under a magnifying glass and my scab had legs and a mouth. I called health dept. the next day and they told me if I felt like I was getting the flu in 4-10 days, that I should go see a doctor even if I didn't have a rash. Five days later I could hardly hold up my head, fever and really bad chills, and I felt like I had been hit by a semi and backed over again. Also my best friend was an entomologist that went around southern Indiana giving talks about the dangers of ticks. Four months later, I can hardly wait to get home after work and put on my sweats, wrap up in a down blanket with a heating pad and wait till it's time to go to bed so I can wake up in the morning barely able to move because of pain and stiffness in back and hips. I have found that going to a massage therapist who can do a lymphatic massage to drain your lymph nodes really helps. But it's expensive. I intend to kick this, but the realization that it's going to take a lot longer than I thought is daunting.
Posts: 4 | From Henderson, KY | Registered: Jan 2010
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map1131
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posted
glert, sorry to hear you need to join lymenet. Would you do us all a big favor?
Please break up you writing into smaller paragraphs. Large blocks of reading are very hard to read.
You're right glert, patience is in order to feel like your old self. I've read posts on lymenet from many from Evansville area since '02.
There used to be a doctor there that treated patients too. Something happened years ago and he closed his practice, I think I'm remembering right.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Glert, maybe we got bit by the same tick, LOL. That sounds so much like my symptoms. (And I was out that way when I got bit.) I also thought my tick was a scab, until it started walking on my hand.
I am SO glad you got better advice than I did. I didn't think to call a health department, and I bet not all of them give the same advice that you got.
There also used to be a neurologist who treated Lyme in Louisville, but I found his name and contacted him this summer, and was told he doesn't treat Lyme any more.
My town has a really great massage therapist who is very inexpensive, lucky me. She does regular massage, though she told me she was thinking about learning the lymph drainage technique.
She did tell me it involved very light, long strokes on the surface of the skin, moving from the extremities toward the heart. Maybe those of us who can't afford it or can't find someone to do it could try it on ourselves and see if that helps.
I think ordinary massage is also supposed to have at least some positive effect on the lymph system.
Patience is my big challenge at the moment, but I'm working on it.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
Just now seeing all the replies. I would LOVE it if a support group could be started. Maybe some of us should meet for coffee as suggested, to explore the idea some more? I was dismayed to learn there was not a local group, when first diagnosed. Sure could have used it during my sickest and my yet-to-be-educated days!
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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Glad to hear you are interested. Map and I are trying to put something together. It is looking like some interested work, so we would need to meet either in the evening or on a weekend. Which would work better for you??
Posts: 366 | From Louisville KY. | Registered: Nov 2003
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pmerv
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Member # 1504
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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map1131
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posted
The lymenet support group info on KY & surrounding areas has been outdated info forever.
This health groups yahoo will never let me enter. Seems to be a bad site for me?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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map1131
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posted
Rene and I have set a date for our first lyme & company support group. It will be in Louiville Sat March 13th. 1-2 hrs Cracker Barrel restaurant. Hopefully winter will be gone by then! Please!!!!!!!!!!!
Anyone interested you can post here or PM Rene or myself.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
I am just now reading this. I think I can make it to the meeting! Where is Cracker Barrel, and what time are we talking?
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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map1131
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posted
Sick Tick, I'll PM you.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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map1131
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posted
Bringing back to the front page. We want the people in this area to see this thread.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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And my heart goes out to all of you who have been struggling with it worse and for longer than me. ((((hugs))))
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