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» LymeNet Flash » Questions and Discussion » Medical Questions » Is Lyme forever?

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Author Topic: Is Lyme forever?
bv
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I am confused. I am new to this site & have been reading statements from other members about being on abx for years & being disabled. Is disseminated lyme incurable? My Doc believes I will be cured. Is that false info?
Posts: 213 | From ohio | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
5dana8
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It depends on how long you had lyme, if you hit the lyme & the co's with the right treatment & for long enough.

I wouldn't so much use the word cured so much as remission. Because at present there is no test to know if you killed every last spirokete.

cured/remission can feel the same [Smile]

Make sure to talk over everything with your LLMD

[ 03. August 2006, 04:11 PM: Message edited by: 5dana8 ]

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5dana8

Posts: 4432 | From some where over the rainbow | Registered: Sep 2005  |  IP: Logged | Report this post to a Moderator
Lymetoo
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I may not be "cured" but I'm feeling really well after years of illness and years of treatment. Can't beat that!!

Success Stories
http://flash.lymenet.org/ubb/Forum1/HTML/022173.html

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--Lymetutu--
Opinions, not medical advice!

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ssmillik
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I've been treated with abx for two years, and I didn't even have my Lyme as bad as most of the people on this site. I feel I will always have the propensity to get Lyme symptoms again if I don't take care of myself. Sometimes when I get really run down, I'll start getting aches. Sometimes I need to restart abx, sometimes I can work through it and be okay.
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treepatrol
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I was infected for quite a while before treatment.

Like 14 years its been in me a long time and I suppose its going to take as long to get rid of it.
Because it has permeated every bone,muscle,organ in me and because of the abilities of Bb to cyst up,blep,incorperate my protiens,dna,its going to take a while even if they come up with something that kills it in all its forms.

Also I must say I have only been on abx orals no Iv's yet.
This is the start of my 5th year treatment.There are people who have beat it but they dont post anymore reasons?apparently not enough compasion? who knows personaly if and when I beat it I will make it a priority to post at least once a month to tell people you can win I promise.


Lord willing we will beat it.

--------------------
Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

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Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
Virginia of Yore
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Some researchers feel the spirochete is going to be with you for life (in one or more forms), like a virus once in you, and you just have to learn what to do to keep it in check, keeping your immune system strong, taking abx as needed, etc.

Some strains of lyme (over 100 in USA) are easily "cured" because they are not very virulent strains to begin with, and don't cause many symptoms. Other strains are more persistent and pathological, attacking more critical body systems. Add into the mix the possibility that someone has been tampering with their genes for biological warfare purposes (see book LAB 257), and one could really have a troublesome strain.

Anyone who tells you lyme is "easily cured" is probably a "duck", a non-LLMD who doesn't know as much as he thinks he knows. Go find another doctor who knows more about how tricky lyme can be to both diagnose and treat.

[ 11. August 2006, 10:18 AM: Message edited by: Virginia of Yore ]

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FoggyLikeLA
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I have had LD now for 11 years, since i was 15. I am lucky to have a doctor who is so up to date and researches actively.

I have been researching these boards long before I went to him however. From my expierience talking to him and comparing these boards I have come up with the finally conclusion. You must find a doctor that will treat not only the infection but all the other things that the infection has done to your body, i.e. CFS, thyroid and hormones...etc.

If the doctor doesn't know what to look for then you might go on with symtoms. My doc was telling me how ineffective abx can be if you don't address things like fibrin and building up your body before giving abx.

From observing the posts here i can see he's pretty much on point. It seems many doctors just pump u up with abx, give you some supplements and not fully address your whole body. THis is due to a lack of good LLMD's, it sucks, this will change in the future. But it is my belief that many people whom it takes many years to get any response aren't addressing all there issues.

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nomoremuscles
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That depends on how long forever is.
Posts: 844 | From Eastern USA | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
daniella
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how long have you had it? What are your coinfections? What were/are your treatments? How long treated? All of that determines when and if you get somewhat better.

I don't really get your question...once you are infected do you have it for life? Or do you mean Will you be ill for life?...Can you clarify bv? tHanks...


Daniella

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~Things may happen in my life time to change who I am but I refuse to let them reduce me...~

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bv
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quote:
Originally posted by daniella:
how long have you had it? What are your coinfections? What were/are your treatments? How long treated? All of that determines when and if you get somewhat better.

I don't really get your question...once you are infected do you have it for life? Or do you mean Will you be ill for life?...Can you clarify bv? tHanks...

I meant can LD be cured versus will I have to live like this for the rest of my life. I believe I have had LD for 3 years. Was diagnosed in March, 06, but now that I understand more about the symptoms of LD, I can see that I have had it since 2004. Started taking 200 mg doxy 2x a day & 500 mg flagyl 2x a day plus acidopholous & cats claw & cq10 in March, 06. . Doc switched me off flagyl to Alinia in june because flagyl seemed to make neurologic symptoms worse. The abx combo i am on and the related herx/symptoms makes it hard for me to live a "normal" life. Not sure I know the difference between Herx versus symptoms of LD. Any insight/info you can give will be appreciated.
Daniella


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daniella
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bv...we all seem to improve. Some keep the improvement others seem to lose ground..I think it is a fine mix of the right abx for you and listening closely to your body...

You will get worse before you get better. I hope your llmd told you that. You can get pretty sick when things are getting killed off from the antibiotics...

keep at it..you will know if it the antibiotics working if you stop them for 3 days and feel significantly better than it is a herx and not you getting worse...

please keep your head up you will win the battle..

--------------------
~Things may happen in my life time to change who I am but I refuse to let them reduce me...~

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Mo
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NO.
Posts: 8337 | From the other shore | Registered: Jul 2002  |  IP: Logged | Report this post to a Moderator
bv
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quote:
Originally posted by Mo:
NO.

Thanks Mo.
Posts: 213 | From ohio | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
bv
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quote:
Originally posted by daniella:
bv...we all seem to improve. Some keep the improvement others seem to lose ground..I think it is a fine mix of the right abx for you and listening closely to your body...

You will get worse before you get better. I hope your llmd told you that. You can get pretty sick when things are getting killed off from the antibiotics...

keep at it..you will know if it the antibiotics working if you stop them for 3 days and feel significantly better than it is a herx and not you getting worse...

please keep your head up you will win the battle..

Thanks, Daniella.
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minimonkey
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I agree with Foggy on this one --

Long term infection with lyme/coinfections causes so many different types of dysfunction in the body -- it is more than just a matter of killing off bacteria...I'm a firm believer that we have to restore balance to the multiple systems (hormones, endocrine dysfunction, etc.), correct nutritional deficiencies (caused by the diseases) and also sometimes incorporate other means of healing, too -- I'm seeing a chiropractor/massage therapist team to help break down the fascial (connective tissue) scarring and also the structural damage from having muscle spasms for years and years.

Will I ever be 100%? I don't know -- but I know that I continue to get better and better, and that is just great!

--------------------
"Looks like freedom but it feels like death..
It's something in between, I guess"

Leonard Cohen, from the song "Closing Time"

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ChrisBtheLymie
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Your question is quite difficult. You can be symptom-free but you will probably always carry the bacteria.
Antibiotics are no magic cure, you need to do loads of things. If you still have fatigue you should looking into Mitochrondrial dysfunction which most Lymies have - I am treating this with loads of supplements and have noticed some nice improvements. I have just started ABX so I have a long road ahead of me, but I am very positive that I will be symptom free - I do know that in order to be symptom-free I will probably need more than ABX. IE) Supplements, excercise, ABX, treating any possible coinfections or other problems.
You can/will get there with the right treatment.

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lkpod
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I haven't been here in months but I wanted to share this with you all.

I was dx'ed October 18th 2004 after 17 years of symptoms and misdiagnosis. I feel better than I have ever felt before in my life (as I was 4 when we are assuming I was bitten).

I was on IV and orals for 8 months and then just orals for another 10 months. I have been off all abx for 2 months now. While I am struggling to get rid of yeast, I'm feeling really good on most days.

I even just got engaged. So while I think that I may continue to need abx intermitantly for the forseeable future, I can deffinitely live like this.

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Lymetoo
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lkpod...Cool story!! Congratulations on regaining your health and on the engagement! [Smile]

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

Posts: 95974 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
   

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