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4451049 tn?1387153437

Is it at all possible for chronic Lyme to be cured?

Some people claim that they are "cured" of chronic Lyme, while others claim that it just goes into remission and you cannot be cured from chronic Lyme.  I understand treatment can be lengthy and difficult but if treatment is done properly, CAN it be cured?  
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Avatar universal
I was diagnosed with Lyme and babesiosis at the same time.  My doc decided what to test for based on my symptom array.

Without having specific knowledge on this point, it's my impression that 'babs' is a pretty straightforward cure (tho maybe I was just lucky), but some other infections like bartonella can be more elusive.

I was treated for babesia first, then Lyme.
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Avatar universal
I didn't get the chance to ask my doc about my odds of getting well with no future relapses. I'm guessing he wouldn't have answered it anyway!  I'll have to save it for next time.

We did talk about biofilms. He says that given my reactions to Boluoke, it is more likely that I have a lot of fibrin in my blood rather than a lot of biofilms. Fibrin is used to make clots and thickens blood.  He recommended another related supplement for biofilms, so we'll see what that one does.

I was very breathy today, but at least my spleen doesn't seem enlarged anymore. That's definitely progress after 4-5 months of it.

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Avatar universal
Jackie---- you said:
" 5 years after treatment ended, I sure feel cured [knock wood!]."

That's great---- and may the cure last forever. Many times it does.

If I'm not being too nosy, can you tell the members here if you did or did not have any other tick-borne infections?

Rico (and others including doctors) seem to imply that having co infections make a cure or remission much harder to attain.



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Avatar universal
Everybody seems to agree in the medical world that when treated sufficiently, early stage Lyme is cured.

Iseems to me that late stage Lyme is cured in some and not in others.  In his chapter in "Insights into Lyme Disease Treatment," my doctor says that he sees greater success in patients without coinfections.  In person, he and his P.A. have told me there are some patients they have a very hard time getting to a point of being "well."  These are the patients sick with multiple infections for a long time, and usually with one or more other systemic things going on. I suspect immune deficiency or patient non-compliance with treatment are also contributing factors.

Antibiotics alone cannot cure any infection.  Antibiotics work WITH the immune system, and the whole paradigm of treating infectious disease is to use pharmaceuticals to get the number of bacteria down to a low enough level that the immune system can then finish off what little is left.  But this paradigm doesn't factor in biofilms.  Biofilms are just not well studied and not well understood.  Given what I have read about biofilms, there are probably a whole lot of people out there dealing with chronic infections that are undiagnosed and untreated.

The assumption that the immune system will finish the job just don't seem to apply to Lyme Disease. Lyme is downright hard to kill and is already very antibiotic resistant even without insufficient treatment. Some strains are more virulent than others, so perhaps someone with a less than perfect immune system, a nasty strain of late stage Lyme Disease, and a couple co-infections will never completely eliminate Lyme spirochetes from their body. They may need to take antibiotics on and off their whole lives to keep it at bay.

Mainstream medicine acknowledges this situation with some other infections. I read an article on Bartonella (and how it causes peliosis hepatis) by an ID doc at UCSF.  She was seeing it in HIV patients in the 90's and mentions that relapse of Bartonella was common, treatment needed to be 4 months or longer in some patients, and that some of these immune compromised HIV patients might even need lifelong therapy.  (Note: She did acknowledge in the article that some immune competent people also had long term Bartonella infections, but she didn't mention treatment duration for them.)

I've also heard of patients with metal implants with chronic infections originating from their implants (probably biofilms on a rod for a broken bone repair or artificial joints) who need to be on prophylactic antibiotics for life.  Or, they need to have the implants removed and the infection treated aggressively.  

And then there's the obvious cases of MRSA and some nearly completely drug resistant strains of TB that are just incurable in some people.  Medicine is very aware of the growing threat of incurable infections.  Unfortunately, the assumption is that they're all drug resistant strains that we've created through "overuse" of antibiotics.

And so I think the "cure" and "no cure" opinions are both correct.  I think that the rally cry needs to be that we want a CONSISTENT or RELIABLE cure for late stage Lyme Disease.  The irony of Pamela Weintraub's book is that towards the end, she has a chapter called 'How I cured my own Lyme Disease.'  She was having a hard time getting rid of her disease and she followed an unusual protocol that Dr. B said he used to get rid of his stubborn case, too.  In spite of her book tour, she's cured, or at least hasn't had a relapse in 6-7 years since publication.

I have set my own expectations for myself at odds of 50/50, given 6 years of illness before diagnosis, steroids, full blow neuroborreliosis, insufficient antibiotics early in the disease, and two coinfections.  I'm seeing my doc shortly. I'll ask for his opinion given my progress.  

Since my goal is wellness with no relapses, I intend to keep doing what my doc says.  There are just too many examples of patients who bailed out before the doc said, 'You're done." and ended up sick again.  I know relapses happen even after an exerienced doc says 'You're done," but my odds are better with his expertise than my own.  I don't mind too much if I have to take oral abx on and off for life.  If that's what it takes to stay well, that is a whole lot better than the alternative.
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Avatar universal
I agree with what you say above.

I suspect ... but have no proof ... that treatment failures are the result of one or more factors such as:  

-- hidden co-infections not diagnosed and therefore not treated;

-- inadequate length of treatment;

-- unrecognized re-infection after treatment (I never saw the first tick that got me, never had a rash, and so could again at some point be bitten in the same sneaky fashion, and again not know it);

-- medications used to which the (co)infections are not susceptible;

-- lingering damage to various bits of ourselves from the infection(s), even if the infection is gone, like the ache a leg broken while skiing -- now fully healed but still a bit messed up;

and who knows what other sneaky tricks the bugz can pull.  Lyme is still such a mystery in so many ways that it would probably be a surprise to find out more things that look like, or are, or could be a continued infection.  It's entirely possible I am not cured, but 5 years after treatment ended, I sure feel cured [knock wood!].

As a society, we have become accustomed to getting sick, getting treated, and being fully well again, but Lyme didn't sign on to those rules.

I fully believe that science will get this worked out, tho, and ILADS and its people will be right there at the forefront.  Hurrah!

If one doc doesn't do the trick, then after a reasonable length of time and no new tricks available in the doc's bag, going to another doc for a second opinion seems fair -- it's not cookbook medicine, after all.

Let us know how we can help with our grab-bag of opinions and ideas --
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4451049 tn?1387153437
Interesting and helpful responses as always in this community!  Thanks!  

I hope your right Jackie!  That's what I was sort of thinking and hoping but as you can see there are always different opinions.  I thought maybe if the right medications are administered for the proper length of time as well as dosage also properly addressing any coinfections involved, then maybe a cure is possible.  Any one of these things could go wrong with treatment, leaving some of the bacteria behind and the possibility of relapse.

I understand what you're saying too wonko.  It probably does have a lot to do with different personal factors.  Three years of treatment sounds like a long time to still have some issues.  Some people seem to think that all the current Lyme associated issues are reversible with treatment.  I have a hard time believing that everything will be reversed.  I suppose it just depends on the amount of physical damage that has already been done, if any.

It's is confusing!  Different websites = differences in opinion.  Forums = arguments.  We can't really rely on testing for answers.  So IDK.

blamom are you saying you relapsed?  If so how many times have you relapsed in 15 years?  Just curious.    

  

  
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