posted
A friend of mine heard mostly bad news about chronic Lyme and wouldn't consider testing even though I thought he had Lyme for 15 years. So here are the hard questions:
Anyone knows the healing rate of chronic Lyme? Chronic Lyme here is 5 years or more. And Healed here is 80%+ back to old self.
Those who are healed - Are you still on abx from time to time? How long does it take to get healed on average? And what's key to recovery - abx? alternative methods? etc.?
Thanks!
Luv
Posts: 43 | From New York City | Registered: Feb 2006
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
2 1/2 - 3 years was what most of the doctors at Hope to Heal Lyme said. See the notes on my site under Protocols. 1/3 do well early. 1/3 are chronic but get better and 1/3 need ongoing, open-ended treatment. Be well.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
That makes no sense- I won't even try to get treatment because I might not get better anyway? What kind of logic is that?
I have had symptoms for 5 years. I finally found a LLMD in December and started treatment for Lyme and Babs.
I am already 50% better, on some days I am 80% better. I will admit that so far once a month I feel as bad as I ever did (although my arthritis left and hasn't come back). I have always felt way worse once a month and that hasn't stopped. Things have shifted around.
On the whole I am functioning so much better. People do get better! I was really sick, I was considering going on disability. I was taking 4 percocets, 4 vicodens and fentyl lozenges for pain and on about 8 other scrips for all kinds of things. I am now on 1/2 a vicodin every few days for pain and 1 other scrip besides the Lyme meds.
There is hope. Where would we be in life if we never tried?
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
80% on bad days.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
I believe I was bit in 1999, maybe a year or two earlier and started good, treatment in May of 2003.
I'm about 99% better. I took diflucan for several months, beginning last October, I still had mild symptoms. They seem to be gone now.
We have been pulsing since January, but did a couple of weeks of ketek(me), biaxin(my son) right after my grandmother died because we both felt run down and my son's acne had flared.
For sure, without faith, hope and a fighting spirit you won't get better. Lucy you sound like you are on the way to overcome this. I fully expect to have to do "touch-ups", but maybe not. Pulsing either abx or diflucan long term seems to be a good maintainence plan.
posted
I am doing so much better - the crazy thing is my Kaiser insurance quack (that I must see to monitor my liver) says that my obvious improvements on abx doesn't mean I have or had Lyme Disease.
He still doesn't think I have Lyme, he still wants me to go see another Neuro, get another MRI, see a rheumo...
I will be cured before they find there behinds thanks to my naturopath putting me in touch with Dr. H
Please encourage your friend to take his health in his own hands and do something! It is amazing to feel good again. I don't feel really good every day but I have good days it it is wonderful!
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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posted
What makes no sense? That not everyone gets totally better? Were you refering to: "1/3 do well early. 1/3 are chronic but get better and 1/3 need ongoing, open-ended treatment"? The tick diseases are nasty. But I, for one, think that the main problem is that doctors don't take it seriously and have somehow been generally mis-informed about lyme. "Lyme Literate doctors are the ones who are supposed to really know about these illnesses, but there are probably some docs who are classified as such, who don't know everything they should...
The key is, to link up with a doc you feel good about, but always be on the lookout; always be learning- you must, in a sense, be part of your medical team, too. Sites like this are helpful, but, again, you have to have lots of salt on hand, and make the most out of everything we ordinary medically ignorant (except for our experiences, which in some cases are, uh, considerable...) lymies can share!
I was in treatment for lyme, ehrlichia, and babesia, for 2 and a half years. I'm one of the lucky ones, but I didn't get better with the first try! And I had my share of crises, which the wonderful folks who were on this board at that time helped me through again and again (my indebtedness to them is why you are hearing from me- lets all continue that tradition as much as our successive adventures in life allow!)
It IS true that you might not get better anyway! But, if you DO get on treatment (for the right diseases!, the following will be true):
1) Even before you are cured, you'll feel alot better than you WOULD have been feeling without the treatment, even considering a few treatment related issues! (you've already seen this!)
2) There's a chance you WILL be totally cured, at least, in the sense that you'll be off meds without having to worry about a relapse. (I still do have some left over issues. But they are not getting worse; in fact, they are improving...)
3) Meanwhile, these diseases do teach you things about life that you would not have learned otherwise. This is a fact. To appreciate this takes something which all of us have, but which is not always accessible to us. Since I'm still in the process (still alive, that is) I can't say much more than that!
So hang in there, and always optimize your chances of getting better. Get everything you can out of what people say here or anywhere else you can find. Everything there is to say applies to all of us, but to widely varying degrees. And give back everything you can; this is in itself a "treatment" that boosts your life energy and helps you fight the diseases!
Best wishes in your battle with these nasty diseases! I hope you NAIL them soon and recover to an extent you never thought possible! Please take to heart everything (even what I say here, perhaps...) and take optimal care of yourself!
DaveS (PS- from what you say, sounds like you're making progress very quickly indeed!)
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
It sounds like depression to me
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
posted
In my opinion, we are all still learning about Lyme disease. Even our LLMD's are still learning about Bb.
I don't like the message that only the 1/3 who catch it early will do well. Telling me that I'm now chronically ill and will never be completely well again is simply unacceptable. Maybe I just haven't been ill long enough yet to accept it.
I think it's possible that a "cure" is still out there and we just haven't found it yet. When I read about how some are responding to the Diflucan protocol, it excites me to see that some seem to have truly been cured...and by a drug which wouldn't have been initally even considered for treating Bb because it's primary use is for fungal infections. Maybe it won't work for everyone, but who knows? It does show that the possibilities are still turning up.
In the meantime, I will do whatever it takes, combining conventional medicine with alternative therapy to beat this thing.
Patti
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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bettyg
Unregistered
posted
Breakng up Dave's post for us neuro lymies to read. Dave, please hit enter key often and double space please for us neuro lymies. Thanks
quote:Originally posted by HaplyCarlessdave:
What makes no sense? That not everyone gets totally better?
Were you refering to: "1/3 do well early. 1/3 are chronic but get better and 1/3 need ongoing, open-ended treatment"?
The tick diseases are nasty. But I, for one, think that the main problem is that doctors don't take it seriously and have somehow been generally mis-informed about lyme.
"Lyme Literate doctors are the ones who are supposed to really know about these illnesses, but there are probably some docs who are classified as such, who don't know everything they should...
The key is, to link up with a doc you feel good about, but always be on the lookout; always be learning- you must, in a sense, be part of your medical team, too.
Sites like this are helpful, but, again, you have to have lots of salt on hand, and make the most out of everything we ordinary medically ignorant (except for our experiences, which in some cases are, uh, considerable...) lymies can share!
I was in treatment for lyme, ehrlichia, and babesia, for 2 and a half years. I'm one of the lucky ones, but I didn't get better with the first try!
And I had my share of crises, which the wonderful folks who were on this board at that time helped me through again and again (my indebtedness to them is why you are hearing from me- lets all continue that tradition as much as our successive adventures in life allow!)
It IS true that you might not get better anyway! But, if you DO get on treatment (for the right diseases!, the following will be true):
1) Even before you are cured, you'll feel alot better than you WOULD have been feeling without the treatment, even considering a few treatment related issues! (you've already seen this!)
2) There's a chance you WILL be totally cured, at least, in the sense that you'll be off meds without having to worry about a relapse. (I still do have some left over issues. But they are not getting worse; in fact, they are improving...)
3) Meanwhile, these diseases do teach you things about life that you would not have learned otherwise. This is a fact.
To appreciate this takes something which all of us have, but which is not always accessible to us. Since I'm still in the process (still alive, that is) I can't say much more than that!
So hang in there, and always optimize your chances of getting better. Get everything you can out of what people say here or anywhere else you can find. Everything there is to say applies to all of us, but to widely varying degrees.
And give back everything you can; this is in itself a "treatment" that boosts your life energy and helps you fight the diseases!
Best wishes in your battle with these nasty diseases! I hope you NAIL them soon and recover to an extent you never thought possible! Please take to heart everything (even what I say here, perhaps...) and take optimal care of yourself!
DaveS (PS- from what you say, sounds like you're making progress very quickly indeed!)
posted
Thanks for the support! I hope my friend will change his mind.
He is not depressed. He has been diagnosed with Chronic Fatigue for 15 years, and tried all kinds of expensive doctors and treatment. He's scared of large dose long-term abx undermining progress, however little achieved over the past decade. He thinks his body is too sensitive for medications. I do see his fear in that there are plenty of side-effects from abx.
Forgive my ignorance, Mel mentioned Diflucan and pulsing...are we talking about diflucan in ADDITION to constant abx cocktails or Diflucan ALONE for several months that worked wonders? What's pulsing?
Regards.
Luv
Posts: 43 | From New York City | Registered: Feb 2006
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posted
Dave- I wasn't saying it doesn't make sense that not everyone gets better. I was saying that it doesn't make sense to not go see a LLMD because there is a chance he believes not everyone gets better.
I am keeping the faith that I will get better. A positive attitude and a healthy lifestyle can only help and I can control those thing.
Luv- I sure hope your friend does go to see a LLMD. I have been down the Fibro/MS?/we just don't know road. The last neuro I saw said that he didn't know what I had but he was sure it was progressive so just go home, wait to get worse, come back and eventually one of their tests would show what it was.
Thank goodness I didn't take his advice. Thank goodness for my LLMD.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Chronic Lyme OR late Chronic Lyme + co-infections (of known or unknown type).
I makes a very B I G difference.
Posts: 1184 | From north america | Registered: Feb 2003
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