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» LymeNet Flash » Questions and Discussion » Medical Questions » Calling Long Term Lymies

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Author Topic: Calling Long Term Lymies
Rambler
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I need to hear something, anything positive about treatment from some people who have had lyme for 25yrs+.

I have been struggling for so many years and now that I have a diagnosis and am in treatment I am worse that ever.

I'm close to 1yr and I'm currently on Rifampin which has tossed all of my mental health stability to the wind. I don't know which end is up- only that the end feels near...

Pain, madness, suffering, misery!!!!

How will I live through this? What the hell can a person really do?

Here is something I have to be greatful for: I just got the plumbing installed on my outdoor bathtub and can now soak in super hot water. Calgon, take me away....

--------------------
Be Well

Posts: 103 | From Out West | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
lightfoot
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Dear Rambler,

Hi! Hang in there. It's a long road for those of us who have been chronic for years AND it does turn around.

I was dx in 99 and was overjoyed to finally learn what was going on. [Smile] It sounds like you can relate. Then the treatment throws you into a spin.

It took several months of IV Rocephin before I really saw the benefits. Although I didn't have horrible herxes on Rocephin, I did with other meds and orals. I learned that a herx can last more than a few days for sure!

Keep doing everything you can and stay in constant contact with your LLMD.

Your outdoor tub sounds wonderful!! What a great refuge!

Good luck and keep us tuned.

--------------------
Healing Smiles.....lightfoot [Smile] [Smile] [Smile]

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painted turtle
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Rambler,

I am a long termer but detest the "Lymie" thing. I do not refer to myself as a lymie.

Got Lyme 30 years before diagnosed.

The last three years before diagnosed was excruciating.

Diagnosed in 2005. The treatment was horrific.

It took two years of treatment to reach any sort of consistent progress.

Now it is 4 years later and I still live with great fatigue, pain, digestive issues, migraines and trigeminal neuralgia and some other things but the good news is, I got my mind back after losing it along with all my memory that last year before being diagnosed.

Good luck.

--------------------
www.lymefire.blogspot.com

Posts: 855 | From United States of Mind | Registered: Aug 2005  |  IP: Logged | Report this post to a Moderator
Keebler
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-

You said: " . . .soak in super hot water . . ."

Oh, please make that WARM water. super hot water can exasperated some symptoms and, for some, trigger a relapse or energy drain that can last for days.

See how you do first with warm water. Ahhhh.

--

As for feeling worse on treatment, that is usually to be expected.

Did your doctor also tell you about certain supplements that can help that - and diet intsructions, too?

What is your current dose of magnesium? Of fish oil?

And what liver and adrenal support are you doing?

-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Rambler
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Thanks.

Thanks for letting me know I'm not alone. There are so many people talking about lyme and how it has affected their lives. It crushes me to know how many people are suffering.

What I need though, is some serious perspective. I need to talk to other people who can relate to what life is like in a vessle that has been tainted by lyme and co for 35 years.

I am a crispy critter. I'm so tired and I know I have such a battle on my hands.

I hear you, Painted Turtle. I don't like it either. It just sorta worked for a subject line. I don't put bumper stickers on my car...

I can relate to every aspect of what you describe about how life is for you-

The first time you responded to one of my posts, I thought, this person is on the same page. You provided a link to your blog. Your wacky poetry made more sense to me than anything I'd read in along time! The creative inspiration that my mind stumbles upon in this madness can be downright amusing. Thank goodness for that!

Keebler- I don't tollerate heat, so I shouldn't get myself into too much trouble. If anything, I'll go up slow. I know a guy who beat his lyme with hot water baths.

I just know it feels good and right. I have a wonderful waterful isolation chamber, now. My god, what a gift.

I see my doc tommorrow. I feel near my end, really. I want to get through the 4 months of rifampin and then take a break. I just don't know if I can hang that long. We'll see. I'm not gonna jump off a bridge, but I swear like I could just fall over dead at any moment. I am so tired.

I did a long round of IV rocephin, which gave me some of my cognitive abilities back. I can read again and I'm just now beginning to see what I'm up agaisnt. I am really scared, I guess. Jeeze.

I do need to bump up my self care. I wonder about adrenal fatigue and will look into that.

More rest, good food, and good vibes.

Anybody else have major mental health scares with rifampin? HOLY MACKERAL!!!

So, thank you for piping up.

--------------------
Be Well

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nenet
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I have had Lyme symptoms since I can remember - likely since birth 36 years ago, and then reinfected several times. The symptoms multiplied and worsened in my late teens, through 20s. Then in my 30s it made me housebound and bedbound.

I was first Diagnosed with Lyme in late December, 2007 (wow, I had 1997 here before - just now caught that typo), and didn't begin real treatment until late May 2008 (had to switch from Diagnosing LLMD to new LLMD for a better fit).

I am coming up on a year of low-dose antibiotic therapy, first with Mino, then Ceftin. I can't handle the Herxing from larger doses yet, but I am still experiencing a HErx each time I increase my dose, so I am relieved to know my Lyme has not developed resistance yet.

I am slowly regaining my cognitive abilities, my old personality (from before being really sick), and some of my energy (though in small pieces, a day this month, a few hours another month). Also, some of my swelling in my joints has gone down. I also have far fewer seizures and spasms now, and milder heart problems and fewer air hunger events than before.

The biggest thing I have to remind myself is that improvement will continue to come in fits and starts, in little ways that others might not even notice. It takes some serious attention to be able to notice when soemthing has improved, because I generally lapse back into the symptom again right after. For me, this is still a signpost, because the improvement was something I haven't had in years, so it stands out easily.

I try to write down symptoms and things each day to keep better track of my overall improvements, as I need to look at it more as several months at a time, but I am still too scattered and it hurts my brain to try to list so many things. I have probably 70-80 or more symptoms on a given day. No WAY do I want to focus on THAT. But for many this helps them stick with it and remain hopeful, because they can track their progress.

Anyway...sorry, there I go with another super long post, haha - I just want to say I am under NO illusions that my reaching remission will be fast or easy for me. I expect remission to take several years, and then if it ends up being faster, I will be pleasantly surprised (HUGE understatement!).

This is NOT to say I don't break down sometimes, and get seriously impatient and full of rage and depressed and overwhelmed, because I do, all those things and more. I just feel that way for a while, and then go back to learning about Lyme and posting here to help others when I can.

I like finding things to distract and amuse me when I am bedbound, or pass the time until I can be more interactive. I like to meditate and other similar things, and learn about as much as I can. Pretty much what I do these days. Sometimes I manage to make art, but phew! that's like a marathon.

[ 05-14-2009, 04:51 PM: Message edited by: nenet ]

--------------------
Dr. C's Western Blot Explanation

Lymenet Success Stories

ILADS Treatment Guidelines

Medical & Scientific Literature on Lyme

"Long-Term Antibiotic Therapy Improves Persistent Symptoms Associated with Lyme Disease"

Posts: 1176 | From KY | Registered: Sep 2007  |  IP: Logged | Report this post to a Moderator
lymeinhell
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We're all allowed a pity party now and then - just don't make it a permanent part of your life.
And Rifampin really gets into your head, so expect lots of goofy head stuff for a bit. I do recall suddenly realizing I was dreaming again while on it, and I started reliving the last 15 yrs in reverse in my dreams...

It plain stinks, you feel like crap, and sometimes instead of fighting, your body just wants flight....

So am hoping it will help you know that people DO get better. I am one of them.

You CAN do this, and you have us to vent on. Sometimes it helps more than you realize..

It's been determined that I got Lyme in 1995. And got rebit in 2004 and picked up Bartonella.

I spent many months on Rifampin along with a cyst buster. And although it really was a kick in the head at first, I gradually got my life back. I've been off antibiotics more than 4 1/2 yrs now.

But I just want to add - I also had to change my life if I wanted a better one back. Antibiotics was not the magic cure all. It kicked the Bart infection, and knocked back the Lyme so my body could start to work on it's own.

IMHO it's a necessary part of treatment, but there's so much more to it.

My story is under Success Stories on page 2 - someone was kind enough to dig up my old posts from the old board, so search for my username on this page http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/15820

Wishing you better times.

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

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

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painted turtle
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Wow Rambler, I can't believe you remember me! Honestly, I still have memory issues and brain glitches but it is all much better than it was.

I actually took all my poetry down for awhile and depersonalized my blogs for some reason, for now. I may get it back out there, especially given the feedback. I kind of wasn't sure anyone was reading it! But....did you call me whacky?? [lol]

I know right where you are. It is amazing how long it can feel like the end is near, really. It's terrible and seems like part of the herx, part of the treatment. I couldn't tolerate babesia treatment much at all and just decided to hope for a spontaneous recovery rather than induce near death with the mepron, etc. But I did do antibiotics as long as I could tolerate.

Searching other avenues now...

Hope your appointment goes well.

--------------------
www.lymefire.blogspot.com

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bettyg
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rambler,

i';ve had chronic lyme for 39 yrs; 34.5 yrs. MISDIAGNOSED by 40-50 drs.

we just ourselves lyme patients; many others resent lymie too especially in newspaper articles; so if you chose to edit, just click on pencil, 3rd box to right of your 1ST POST to open up subject/text areas [Smile]

not treating for lyme; just all other things wrong w/me. never on rocephin, etc.

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sixgoofykids
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I have had Lyme for 35 years. I'm doing great now. Hang in there! It's tough and bart treatment will throw you for a loop, but it's worth it.

--------------------
sixgoofykids.blogspot.com

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valzunk
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I'm 5 weeks into treatment but have had to take a break to treat a bad yeast infection from soaking in my whirlpool a lot. At least I think that is what happened. It really hurt.

LLMD had me on nystatin but now added diflucan to the mix and will switch my abx once done with that course.

I, too, am feeling worse since starting treatment and know there will be more bad times to come. Having a hard time hanging in there.

I am so tired and hurt like mad. The tub was helping me but now am afraid to use it because of the yeast. Maybe that wasn't the problem. I used Epsom salts but they were not plain-had eucalyptis (sp) and spearmint in them. Thought that would be fun.

Maybe the plain ones would have been OK. Maybe just plain water???

I am really hoping that my treatment gets me functioning at a higher level but am only able to tolerate low doses of ceftin at this point and still get a lot of fatigue and hurting.

--------------------
vz

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Lymetoo
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There's a whole link of success stories in General Support .. up at the top.

I've had Lyme for 50 yrs and doing well. Was not dxd and treated until Aug 2000.

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

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efsd25
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Only 22 years with lyme, hopefully you'll let me post here:-). Don't giveup, even though chronic Lyme cannot be cured, it can be beaten! My wife, my son and I have lyme, we all work and have productive lives. My son see's Dr. J in New Haven, my wife sees Dr H in SF and I see Dr. R in Seattle. It has made a huge difference in our lives. At one point my son could not even jog around a track a single time. Now he is very active, in fact, a 3 years ago we climbed Kilimanjaro!

Every year we new advances are made. First it was just antibiotics, then supplements, now we are going after the biofilms with enzymes! I'm really excited how, after all these years, reseach is ramping up.

Keep nailing those bugs, detox, and exercise as you are able to. You'll get better!!!

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jt345
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Hi

1989 was my year I think,it could of been longer ,but it really dosn't matter.

I had a LLMD,and the thing that made alot of sense for me was . He always said the turle wins this race. It has taken Us a longtime to get sick to the point We are at ,and in all honesty it will take some time too get well.


Hang in there with the treatment and try not too get reinfected(that will set You back.(at least it did Me)

The people here are great and I don't think there is a person here that has not gone through something alittle different. So we have a very diverse group here,and tons of info.

I do hope You will feel better soon.
appleseed

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Rambler
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Thank You Again, Everyone.

I am so appreciative that you are all here. I'm sorry to sound like I want to talk to old timers exclusively- We're all in the same boat, some of us have just been here longer...

But just for me, I needed to hear from some folks who have seen this territory before, you know? It scares the crap outa me, but I gotta know others have lived through this.

Yes, Painted Turtle, I did use the word whacky. That is a complement in the highest order!
I swear, you speak'a my language.
I'm a writer, too.

I think it would be fun to have some humor on this page. I've got a few lyme stories that even make me laugh. I'll have to share.

I want to talk more about what folks are doing for the long haul. More later. Thankyou.

--------------------
Be Well

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Lymetoo
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Long haul?? Rifing!!

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

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bettyg
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rambler,

go to SUPPORT to post your humor [Smile]

lymetoo started a post their on humor; i've added it to it daily/weekly with the good stuff i'm mailed....

believe i added last night or the night before; look for it over there.

MEDICAL is strictly for MEDICAL QUSTIONS....thanks.

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lpkayak
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rambler-i got wacky on rifampin - i had to ramp up real slow and it was good to have a supportive close friend near me. the rifampin really helped me tho. i ended up on it about 4 months.

my lyme got bad in 84 but wasn't dx til 96. txed til 2001-high dose orals. able to work teaching to get my own kids thru college then physical trauma got the lyme going again and i am txing again and disabled.

i would like to talk to you if you want-its very hard for me to type now-but you don't have a pm box?

write me at [email protected]

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

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Keebler
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-

I don't call myself a "Lymie" but I a person who has been living with lyme/TBD for a long time. Some things are better, some not. I've never been able to get "official treatment" but I do the best I can.


You have to know that there is more to learn and that the book on your life is still a work in progress.


Be sure to read through the SUCCESS STORIES to see how others have gotten better:


http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/15820

SUCCESS STORIES

-

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CD57
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It gets better. I think your perspective if off since you're on Rifampin. Wowza! That one knocked my socks off about six weeks in....a crying, miserable, shaking, heart-pounding mess! Oh and sleepless too.

I've probably had it awhile too, although unsymptomatic for many yeers. I am slowly clawing my way back out/up and have some days where i don't even feel like I'm sick!

Just keep going.

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