This is topic Lyme Cure or Remission in forum Medical Questions at LymeNet Flash.


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Posted by Connie Reese (Member # 15615) on :
 
I saw "Mystery Diagnosis" a few weeks ago..The LLMD said "If you have lyme and treatment it will never leave your system....But you can be in remission for a very long time or forever." This may not be verbatim, but that was the gist...Thoughts? Just trying to learn.. Connie. [Smile]
 
Posted by ByronSBell 2007 (Member # 11496) on :
 
I don't think you can fully eradicate the lyme bug but you can get it under control and the immune system can keep it under control

Most healthy people are walking around with parasites, mono, strep, rocky mountain spotted fever, co-infections, yeast, ect

These people are living normal everyday lives.
Same idea as getting immunizations
 
Posted by lymie_in_md (Member # 14197) on :
 
Byron, if you can get it you can beat it. Just my opinion as yoda said "there is no try, do or do not". [Wink]
 
Posted by adamm (Member # 11910) on :
 
According to what I've read, researchers have

never cured an experimental animal of disseminated Lyme,

but

I too am uncertain about the possibility of attaining a permanent
asymptomatic state. Any thoughts on this from the more knowledgeable?
 
Posted by migs (Member # 16496) on :
 
Well I know a patient that was 2 years undiagnosed Lyme and was finally treated with 4 years of oral antibiotics and has now been completely symptom free for over 2 years.

Dr. Murakami, who used to be Canada's only LLMD, cured many patients. He was very aggressive with treatment. He could not cure all but many left his care symptom free.

Dr. R in Seattle told me that he believes once you miss your diagnosis by one month or more, you're usually fighting with remission forever and not actually defeating it.

Differing opinions from two smart guys, so...

No doubt it can be cured. It's just not easy.

It can be cured. It just has to be fought properly.
 
Posted by sutherngrl (Member # 16270) on :
 
My LLMD uses the word cure. I have seen about seven of his patients that have been symptom free for 5 years or more. I am going for the cure! I don't think in terms of remmission.
 
Posted by gemofnj (Member # 15551) on :
 
mmm..

maybe the northeast USA doctors are just not as knowledgeable.

mine uses remission too. would rather have the CURE.
 
Posted by UnexpectedIlls (Member # 15144) on :
 
What is cure anyway?? I mean if you feel well with no symptoms is that CURE??

Maybe we don't even really know what cure is... How do we know that the people who go into "remission" for years on end are not "cured"?

When I first got sick almost 2 years ago.. I had NO clue what was wrong with me. ALL I wanted to do was look for the CURE right away and go back to living my life the way it was before this sudden horrible thing. I think differently now. A Cure would be very nice, but feeling better at this point would be a GREAT start.

Remission, Cure, I don't CARE as long as I feel well and can take care of myself and My children again... THAT would be nice.
 
Posted by sutherngrl (Member # 16270) on :
 
I agree, it doesn't matter what you want to call it, as long as you feel well again!

There is a LLMD in the south that uses the word remission. So it has nothing to do with geography. However the doc I see has researched LD for 30 years.
 
Posted by Connie Reese (Member # 15615) on :
 
Unexpected..I like the way you think~~Thank you. [kiss] Connie
 
Posted by Wimenin (Member # 15294) on :
 
I'm of the opinion that lyme is like chicken pox/shingles, EB, that once you have it, it will always be with you. It may go dormant and you never have problems again, or, it can come back out when your immune system is weak.

As for cure or remission:

My philosophy is simple...if you can live your life the way you want, without thinking, talking, treating, reacting to lyme, you're cured/in remission.

If you still have neuro, physical issues, and are taking meds/supplements, you're still dealing with it.
 
Posted by nurselily (Member # 17265) on :
 
I had lyme / babesia for about 7 years..was on all the abx/ mepron etc..for over 2 years. I combined this with alternative medicines, like reiki, and acupuncture.

after 2 years i stopped abx and have felt great now for about 3 years. When I'm extremely stressed I do notice some of my symptoms creeping up on me, so I know to take it easy and go and get acupunture to strengthen my immune system again. This was similiar with my son who was born with it..after 3 years undiagnosed , finally got treatment for about 1 year with Dr. J. in Ct....he has been off abx with the help of alternative medicine also, and is completely symptom free.

I work full time and THEN some..feel great most of the time. I really believe that you need to combine treatment protocols though, and not just abx..I think it was the combo of abx and reiki and acupunture that got me better...it all strengthened my immune system again.

Hope this helps
Lisa
 
Posted by clairenotes (Member # 10392) on :
 
The word 'remission' for me is just way too self-limiting. Even if we don't have the best, most efficient way of clearing these infections yet, it seems only a matter of time. Too many people are getting ill from all walks of life, which will mean more and more interesting and valuable collaborations, etc. The way we look at the word 'cure' might be slightly altered... simultaneously with the way we look at what it means to be or stay healthy.

Claire
 
Posted by Rianna (Member # 11038) on :
 
I was told you go in to Remission and you often fall out of remission 3 times and then you are cured - Obviusly you have to treat every time.

I am just waiting for the 1st remmision [Roll Eyes]

Rianna
 
Posted by adamm (Member # 11910) on :
 
Yeah, I do remember Weintraub speculating about that in her book.
Trouble is that there is just no research being done on things like these.
 
Posted by steven (Member # 13101) on :
 
ive been 99% free of symptoms and off abx for a year! but then relapsed and did not got back to this state yet (3 years since then).
 
Posted by micul (Member # 6314) on :
 
I believe that it is possible to get rid of it completely, including all co-infections. It is clear that the bugs can be taken down with abx to very low levels, which brings back a state of well being to a lot of infected people.

It only stands to reason that it can be completely erradicated with continued Tx, if it is done properly. The biofilms have to be broken down so that every pathogen can be exposed and eliminated. This will never be possible if supplements of magnesium, and other biofilm building blocks are continually replenished.What good does it do to jackhammer away the dried concrete when you keep pouring new cement along side of it?
 
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