posted
I'm assuming if this is happening, even a mild form, I'll never get rid of this completely.
It seems like I read somewhere that sometimes people just have to take abx every several years or so. Is Flagyl and Zith not a good combo? It got rid of all symptoms the first time.
I'm trying to view this as something people have to treat daily, like high BP or thyroid problems.
It does annoy me though that EVERYTHING can somehow be attributed to Lyme. For example, if the MVP I was dx'ed with at 17 was caused by Lyme,
then there is NO TELLING when I got this and I'm basically screwed I'm 36 now...was treated at 28 the first time).
Are there ANY success stories from people who went undx'ed for a LONG time and are now fine?
Does it ALWAYS have to get worse? I want to know WHY 2 rounds of prednisone, another illness, maybe viral (the prednisone knocked it out immediately),
emotional and work stress, and a herniated disc brought out NO SYMPTOMS!!!!
Sorry.....I'm just really irritated and as much as I try not to read this board because it freaks me out, I can't help it.
Posts: 45 | From Crestview, Fl U.S | Registered: Feb 2004
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
So sorry you are struggling; please feel free to come and join us also on www.lymefriends.com. It is a great adjunct to lymenet and many of us hang out over there as more of a social networking site.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I can't give you a success story since I'm in my 3rd year of treatment after going for many decades with udiagnosed lyme disease. I am feeling better but have a long way to go.
Were you treated for co-infections previously?
I do want to mention that prednisone (a steroid) in contraindicated in lyme. Very BAD in fact. Look for steroids on page 4 of Dr. B's guidelines. I don't know if this is the newest version. http://www.lymediseaseassociation.org/drbguide200509.pdf
That said, so much depends on a persons genetics, lifestyle (level of stress, diet etc..), strain of infection, number of co-infections, length of time untreated, etc. etc...
Hope you feel better soon.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I don't know if I was tested for co-infections. can you not just have a Lyme relapse? From what I've read here about the co-infections, I don't fit the profile. I know steroids are bad but at the time, I thought the Lyme was gone. Would there have been bad effects pretty quickly? Or maybe the steroids are why I may be having a relapse.
Posts: 45 | From Crestview, Fl U.S | Registered: Feb 2004
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Hey Kimberly,
Sorry you're feeling so miserable.
What was the time frame from when you took the steroids to when you started feeling bad again?
How long did you treat the first go round?
What symptoms did you have the first time with Lyme? What symptoms have come back this time?
I know it's a lot of questions, just trying to figure some things out before I start give you any advice
Regardless of what your answers are, the most important thing is that you take this seriously and get back on abx fast - the faster you get back on them the faster your second remission will come, but I'm sure you already know that...
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
What was the time frame from when you took the steroids to when you started feeling bad again?
That's the thing; I DON'T feel bad....never did...even the first time around. BUT, I took the Prednisone in July and August of 2007. It was 2 courses of 6 or 7 days I think.
How long did you treat the first go round?
I was treated with Flagyl and Zithromax for 9 months. One I took M-W-F and the other I took daily. I also took Diflucan 1x weekly.
What symptoms did you have the first time with Lyme? What symptoms have come back this time?
Hmmmm....I had very mild vague pain in the inside of knees, muscle twitches, buzzing sensation in 2 fingers,
burning type sensations in thighs, a feeling of goose bumps but there weren't any,
I'm sure there were a few more but I can't remember because they were never bad. I only picked up on them being a hypochondriac and self diagnosing online.
None of this stuff was constant...it came and went. Symptoms now are the knee thing, I guess tennis elbow (mild)- was seen by a
chriopractor for this last year and it cleared up. I lift weights so I attributed it to that.
I have TMJ like pain in the left side of my face. So far, this has only happened a few times,
I had a feeling that would come and go and change location on my face that felt like a very mild sunburn; it went away in Feb.,
very infrequent muscle twitching, if I talk a lot, I sometimes get tongue tied,
Sometimes when I type, I might type the same word twice, I have a feeling in one of my little toes that's almost like everything I feel is through something...like something is covering my toe....not numb though, and some of the older symptoms.
I think that's it. I work out 6 days per week, work daily, sometimes including paperwork on weekends, I lift weights and do high intensity cardio (step, kickboxing, and I was doing spinning classes).
Posts: 45 | From Crestview, Fl U.S | Registered: Feb 2004
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Wow, well it sounds like you're a lucky Lymie if there is such a thing, LOL. Most people on here are very sick and multiply co-infected with other diseases.
I feel pretty confident in saying that you don't have co-infections, only Lyme which is a good thing.
What I can tell you is this - You still have Lyme and you need to take it very seriously. If it continues to go untreated you will most assuredly get much sicker.
I take it you were seeing a Lyme Literate doctor at the time you were first treating? If he's still practicing go back tihim ASAP and get back on abx - if he's not then go to the "Seeking a Doctor" section here and post for a doctor nearest you.
Other than that the only other thing you can do is take a deep breath and know that you're going to be just fine!
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
Why do you feel there aren't any co-infections? I've already called the dr and I'm waiting on a call back.
I REALLY hope I don't have to do IV abx. I want to remain active and from what I've read, that's really not possible if you're doing IV.
Also, I have no idea when the first bite occurred. I went 10 mos with symptoms until I found the LLMD and things never got worse. Could that be possible again, especially since I'm catching it within a month or so?
Through the years, I've had one or two little things come up here and there but nothing that stayed more than a day or so.
This is the first time I've had multiple things that have lasted. I know no one can predict the future, but I just want reassurance that this will go away, as I'm sure everyone here does.
posted
Sorry I didn't break up that last post....I keep forgetting about that. I'll fix that real quick. Thanks for the encouragement.
Didn't you tell me though that you still have a few little things going on?
Do you feel you're just in remission? I HATE that word because it makes me feel like we can be going on just wonderfully then BAM!!!!!
Posts: 45 | From Crestview, Fl U.S | Registered: Feb 2004
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
I doubt that you're co-infected because number one you would likely be much sicker and number two it's really unlikely you would have gone into remission by just taking Flagyl and Zith.
I agree with TuTu concerning IV - you should do fine on orals.
You're case is a fine example of why we tend to use the word remission - more often than not at some point people who have Lyme get "rid" of it and months or years later it comes sneaking back.
There have also been many studies done on animals that suggest that once infected with Lyme it can never be fully erdicated. It's scary stuff, for sure.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
So I guess it's like someone said earlier about the EBV virus.....it's always there, but we don't all have mono....or everyone who had chicken pox doesn't get shingles...even though the virus is there.
Posts: 45 | From Crestview, Fl U.S | Registered: Feb 2004
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