Just wondering if I am the only one being treated for so much longer or are we all on abx long term(meaning longer than 2 years)

I have been on Abx 4 1/2 years with improvement but still need to be treated. I can't imagine 1-2 years to clear out the lyme infection I had...

What about you guys?

daniella

[This message has been edited by daniella (edited 08 May 2005).]
 

and i had lyme, bart and babs for about 17 years..

Lisa
 

So if I continue on at the current rate...I hope to be off the abx by the end of the year. I think it's been helpful that while I didn't have a diagnosis we've been working on my immune system for a couple years previous to this.

We already treated and cleared up a mycloplasmas infection. Checked for heavy metals, checked and fixed all my vit deficiancies, And also we know about the cyst state of bb and checked for co-infectons (b. microti). So maybe that helps a lot.

Of course that's all theoretical.
I'm adding in cat's claw. It sounds like that's helped people. And I'm trying tinadozole...though intial experiements aren't much better than the flagyl experiment which totally hindered my progress and prevented me from eating.

So the cyst busting could be an issue that makes it take longer for me.

What I do know is that if this requires treatment longer than a year, I won't have money to treat it, so either way I won't be on abx for more than a year.

I edited this as requested, though I'm late stage too, and this layout acutally makes it harder to read for me...as the grouping is rather important to my head.

If this were a bigger FONT it would be great though !(changing it in the browser just munges up the layout and causes different problems)

[This message has been edited by burnbitter (edited 09 May 2005).]
 

The first 3-4 months i did not think i would make it, i felt so horrible.

Now i am having better days and sleeping a little better. I ahve noticed lots of improvement but have also back slid quite a bit at times.

I sure hope is does not take years and years...when I am depressed over this (which i get when i herx) I feel like i can't do it one more day...

This is a marathon...good question how long it takes...sometimes it feels like its a life sentence...just when i think i'm on top of it....WHAM...it hits me down again.

It gets really tiring...I guess that is normal in treatment.
 

By the way, you may want to be cautious about what you hear different "experts" say. It's possible they say different things in different situations. Like for example, the person you just mentioned told me it would take me years and years to get better. Now that I'm doing co-infection + Lyme treatment with somebody else, the recovery is going swiftly.

I can't promise you it will be completed in a year, but at this pace (with Lyme + babs + bart treatment) I would expect to be on light maintenance abx within four months. In two weeks, I return to a regular job for the for first time since I got sick in August 2000.
 

I feel fantastic.
 

I was treated for babs and Lyme. I plan to knock out any remaining critters with Rife.

I'm doing that so I can STAY off abx and continue to feel great.

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oops!
Lymetutu
 

I was told my treatment would be 8-12 months based on 4-6 months of treatment for each year of being sick. I self treated last year which I believe helped.

I've only been on orals so far and am not sure about effectiveness with all of my CNS involvement.
 

I was on Doxi for 30 days, then the doc took me off and put me on the wobenzym, cats claw and transfer factor protocol.

I am concerned about the short course of abx, but the doctor wants to "treat to my symptoms" which, I have to say, have been pretty mild. Still, I'm taking it one day at a time and will not hesitate to rattle the docs cage for another prescription, or even find another doc if I feel I need to.
 

Husband has done it for over 2 years... 10 months for me... kids started at Christmas--no end in sight...

L
 

Now, what I'm about to say may cause some to want to scream, jump off a bridge, or just attack me verbally.

Please don't.

What I heard while sitting in my LLMD's waiting room - questioning another patient about the length of her treatmemt is that my doc said to HER that it would take about 1 year of treatment for every year she had been infected.

NOW, when I asked HIM personally - he would not tell me. He just said something like it would be awhile. I assume he didn't want to scare the crap out of me.

I, personally, tend to be an overachiever, so I intend to get well before my 20+ time period is over.

Again - DON'T PANIC. Maybe he just told that to that particular patient OR maybe that patient is CRAZY?

...or maybe the CRAZY one is ME and you should NEVER listen to anything I type???

OR maybe he was wrong? (I know that's a hard one to believe - that a doc could ever be wrong...

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DR. Wiseass - not a real doc - just a real wise ass.
www.twistoflyme.blogspot.com
 

I really think it depends on how long you have been sick. If you have been sick for a year, it may only take a year or so to get better.

If you have been sick and undiagnosed for 10,20,30+ years it will take a very long time to kill all of the little buggers and get well.

I have been sick my whole life, my whole family(my mother, 2 sisters, nephew, myself, & my twin sons) have Lyme + co-infections.

I have been on abx for 5 months, and seeing some improvement in some areas. But its a up & down battle.

I will be on abx for however long it takes to get well. I am expecting 5 years or more.

Good luck & good health,
Lisi
 

I have not been tested or treated for co-infections to date. I plan to soon.

Burnbitter, please EDIT your long post to paragraphs of 6-8 lines only and double space between them. We late-stage lymies can not comprehend that much...thanks for your consideration.

Also, you can edit ANY TIME on TEXT, but NOT TOPIC LINE...so be specific there for more replies! thanks...

Bettyg, Iowa
 

So I guess it will still be a while for me..I don't mind staying on the abx actually I prefer it because I keep improving..

Been on abx for 10 months.

Have had symptoms consistent with LD for 25 years.

Have gotten better in the last 4 weeks. Don't know what it means though and what's causing it. I'm doing other treatments besides abx.

I don't buy the "linear" assumption that the time-to-heal is proportional to the time-you-have-been-ill.

I think that many of us have been chronically ill for many many years, without knowing it, and that there are several things wrong with us and that we're not just infected with Lyme and gang.

And understanding that the road to healing is not just to take some abx is not easily learned.

Most of us are happy when we finally find an LLMD. But the fact is that most LLMDs just give you abx but don't address the "bigger" system issues suchs as eating habits, living habits, metal poisining, the use of natural antibiotics and herbs, and so on.

Thus, those of us who are lucky enough to have a hollistic LLMD (I don't, btw) will heal faster than those of us who have to learn the hard way, which is probably most of us.

And the longer you have been sick, the longer you have probably also had your particular habits and exposures, which are therefore more difficult to get rid of, especially if we don't see the right doctor to begin with.

But I can imagine, that if we went to see the right doctor to begin with, he could cure us all in a time that is NOT significantly dependent on how long we have been sick.

Just my 2c, and I'm not an MD.

Michael
 

didnt THINK about lyme for 10 years! no sympoms!

Re-Diagnosed with Neuro lyme 2001 (re-infected or not...we will never know)
2 months IV, about 6 months orals

no lyme symptoms for 4 years! (although other symptoms due to ABX use)

relapse and re-diagnosis 2005
This time IGENEX diagnosed all three other co-infections.

LLMD says that is why I am relapsing, must treat co-infections this time and THEN lyme.
That is the shortest possible way of telling you the longest story of my LIFE! hahaa
hope it helps! Trails
 

So far I have been on abx for 4 years and I am getting better. It has been tough..I think the first year I herxed constantly..and probably into the second, everything seems blurry to me.

It has only really been in the last year, since being treated for Babesia that I have actually wanted to go out and do things.

Like my sister said above (Lisi...hey lisi!!! ) I will be on abx for however long it takes me to get well. I have been sick a very long time.

Good luck to you and God bless,
Beverly

[This message has been edited by Beverly (edited 09 May 2005).]
 

quote:

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Originally posted by DR. Wiseass:

... that my doc said to HER that it would take about 1 year of treatment for every year she had been infected.

---

I hope that's wrong. I don't plan on living a lot longer than than another 20+ years.
Also I am quite finished with the chronic agony. Please make it stop now. sigh.

 

So, I'll be 100 yrs old when I'm cured! Couldn't be true! Someone else said it was 2 yrs for each yr of infection. Then I'd be 146. Not bad!

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oops!
Lymetutu
 

Noone has mentioned the fact that people with certain genetic types are more likely to have "intractable" chronic Lyme, in other words, will take much longer and may not ever totally recover.

This is mentioned in many papers on Lyme, including "The Pursuit of Sensible Answers" by Liegner, which is especially easy to read. I and my two daughters have the HLA-DR 4 genetic type, which is one of the types most susceptible to hard-to-treat Lyme.

What this means, essentially, is there is a tendency to have autoimmune activity with our Lyme, and, sure enough, we all have positive ANA's and other positive labs, skin biopsies etc. (the kind that lead rheumatologists to say we have lupus).

There was a recent article in the Journal of Microbiology that compared Lyme and strep. In certain genetically susceptible individuals, strep can cause autoimmune damage to the heart (rheumatic fever), and those people need to be on preventative antibiotics for the rest of their lives. A similar picture was found in mice w/Lyme.

This is all very complicated, but I am trying to make the point that recovery time isn't just simply related to any one factor, such as length of illness, but is complex and still very much a mystery on the frontiers of medicine. We need more research!!

I personally have become used to the idea that I have a chronic and possibly permanent illness and try to live my life well anyway, the best I can. I have a lot more grief and frustration, however, over the also chronic illness of my teenage daughter.

[This message has been edited by Lyddie (edited 10 May 2005).]
 

You make a really good point. It sheds some light on this great mystery.

And he thinks I have Bart and Babs...

He thinks I've had Lyme since 2000 but I think it's more like early 90's. I've had symptoms on and off since I can remember.

I just don't have the time, energy or money (you know how expensive that first visit is) right now to seek out and try another new LLMD.

[This message has been edited by JillF (edited 11 May 2005).]
 

quote:

---

Originally posted by JillF:
My LLMD here in MD wants to take me off all ABX after only 4.5 months of treatment.

And he thinks I have Bart and Babs...

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Surely you can find an LLMD who is more sensible? He's gotta be kidding.

Not all LLMD's are expensive.

As for someone's question about breaks....I only took one in more than 4 yrs. It was 5 wks long.

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oops!
Lymetutu
 

Like...Ceftin, Doxy, Placqunil(sp?), Biaxin, Minocycline, Omnicef, Flagyl, Augmentin....think that's it...

Up coming ABX's are: Leviquin & who knows what other fun awaits????

Although I am not planning on going off any time soon, some times I wonder if I am getting anywhere (however, just in a bad spot the past few months- maybe it will improve????).

However, Rife might be in my future...

-Sarah

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