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

[Ephedra]

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?  

[JackieCalifornia]

You're very welcome.  It sounds like you have an objective grasp of your situation and are figuring out ways to accommodate your personal approach/style to be effective with docs.  That's quite rational, I think.

Seeing an LLMD may be a wonderful gift to yourself -- as you say, an LLMD might better understand.  I agree.  They do understand the variations in symptoms and the effect of the infections on brain chemistry, emotions, affect, etc.

Keep us posted -- wishing you the best -- J.

[Ephedra]

Will do Jackie and cave!  With Lyme as well as all of the co and opportunistic possibilities, I will most likely nOt order my own meds as I normally would.  I've thought and researched long and hard, yet cannot definitively match my symptoms to any particular co infections but that doesn't mean they don't exist.  It's most likely a mess of multiple co infections as well as secondary abnormalities interfering with the various symptom expression.  Yes cave, I can take care of myself better than anyone!  Only I know how awful I feel better than anyone.  Don't get me wrong, help and guidance is always appreciated.  It’s just difficult to verbally explain as I have a LOT of symptoms.  Some of them change or vary in degree.  I have horrible social phobia, which significantly impairs my ability to get the main points across.  I don't schedule appointments unless I have to because I never know how I’ll be from one day to the next.  For reasons unknown, stimulants and supplements are more effective some days than others.  Therefore if I go to a walk in accepted Dr, it will be an occasional better day.  While my communication may be more effective, most of my other symptoms will be somewhat masked as well.  So in an effort to explain the current somewhat unevident issues and the severity, I have no problem telling the Dr what prescription medications I may be taking at my own discretion and why.  Although I try to leave out any mental type issues when visiting an MD.  

Having such a complex physical illness is complicated to an unimaginable degree by something like social phobia.  Effective communication is absolutely essential!  I'm assuming its Lyme related since it progressed right along with everything else, so maybe a LLMD might better understand.  I have everything in writing as she wanted, so it should be easier.  

You're right though Jackie, it's not a do-it- yourself project.  I realize that, I guess I just don't want to accept it.  I've went over Burrascano's treatment guidelines a few times.  It is interesting!  That’s actually where I get a lot of information.  
  
Thanks everyone :)  

[Ephedra]

Please keep us updated on what answer you may get from your doc in regards to your odds of getting well.  I realize everyone IS different.  I'm just curious as to what he might say. :)

[cave76]

You said:

"I can take care of myself better than anyone!"

Glad to hear that! Please keep us filled in with your progress.

[JackieCalifornia]

It's good that you're interested in how the treatment is structured and tailored to your particular infections and symptoms.  I need to feel in control (at some level, at least) of what's going on in situations like Lyme, because then I'm not feeling helpless.  

(Here in California, they tell people when there is an earthquake to get under a desk or table so you don't get hit by stuff falling off the walls or bookcases tipping over etc.  They also say to yell at the earthquake:  "Stop!  Stop this NOW!"  And just keep yelling at the earthquake until it finally obeys.  No, nobody really believes we can stop earthquakes by yelling at them, but the important part is to TAKE CONTROL of the situation and focus on the fact that the shaking will stop.  I found that same approach worked with Lyme:  I didn't yell at it, but by reading and thinking and figuring out what to do next, I didn't feel helpless.)

And even better, you are not helpless in the face of Lyme, because you can think and learn and understand all the tricks Lyme plays and then with your doc, put together a game plan to win the war.  You go!

I didn't use herbs, so can't recommend any.  My LLMD is an all-antibiotics, all-the-time kind of doc.

The reason I would not order up antibiotics on my own is that Lyme and its co-infections (of which there are quite a few) all require different meds, and taking the wrong ones can not only delay effective treatment, but can mess up the diagnostic picture for the doc.  It can sometimes take months for even a really good LLMD to figure out what hidden infections you have, because Lyme and its little friends play all sorts of tricks that make diagnosis complicated.  And thus treatment is also complicated.

Lyme is, sadly, not a do-it-yourself project.  It takes a knowledgeable and subtle doc to see into the tests at a level beyond what it says on the lab results.  I'm guessing this isn't going to make you feel in control, but that's what it takes to beat Lyme.  The best you can do now is read up everything you can, for example, Burrascano's treatment guidelines on the ILADS [dot] org website.  I think you'll actually enjoy it, because you sound like you are good at unraveling such things.

Hang on, keep us posted --

[Ephedra]

Some websites sell antibiotics for pets w/o a script.  Then of course there are overseas online pharmacies, no script required.  I've went this route quite a few times in the past without any problems.  I can take care of myself better than anyone!  I haven't came across a Dr that really cares.  Some of them are so worried about doing something wrong, that it significantly interferes with patient care.  I kinda understand why but not to that extent.  I haven't been to many Drs in my time but the ones I have seen are completely careless.  

Your right Jackie!  That's probably the main reason I haven't ordered them yet.  I'm getting ideas on what I may have as well as what medications would be best.  And no, I'm not getting ideas from public online forum members either.  It's complicated and so I've been holding myself back.  I've already started with the herbal approach.  I haven't noticed much of an effect, if any.  Besides Cats Claw, what would you recommend?  I take supplements too.  But all this stuff gets expensive.  Much more expensive than ordering my own meds.

Upon scheduling the appointment they mentioned calling if they got a cancellation but I'd imagine a lot of people are in line first.  I agree Jackie, a good doc is the most important thing and well worth a wait.  

Thanks mojogal!  I need to get my kids accurately tested somehow.  The Lab Corp western blot is easily ordered online but it's not really that cheap.  They're not nearly as sick as I am, so IDK if it would be easier to detect or not.    
        

[mojogal]

I had the lab corp western blot and got a false negative. After my LLMD took the IgeneX test, it came back positive.

[JackieCalifornia]

I understand.  Without a diagnosis, you wouldn't know what meds to order.

You might consider some herbal remedies, but be sure to tell the doc when you get there what you have been taking and for how long, because the herbs can confuse the diagnostic picture and perhaps affect the test results.

A good doc is the most important thing imo and experience.  Hang on!  You'll get there.  If the doc can put you on a cancellation list, that might get you there sooner.

[cave76]

"Ordering your own meds"?

If you mean from a foreign pharmacy, on line, that can be fraught with many dangers. Esp. the ones that advertise 'no prescription needed'.

If you have other ways to get your own antibiotics----(no rx) that can also prove problematic if you have a reaction to them.  Unless you have a close family member who is a doctor or maybe a nurse who is willing to get you the abx.

But if you have a  different safe, proven way------ then maybe. But who will oversee your treatment?

I certainly wouldn't depend on public online forum members; not me, not others.
Not that they can't be knowledgeable in many ways.

[Ephedra]

Unfortunately, there are no other LLMDs in my driving distance.  She seems like a good one but I seriously don't know if I can wait that long.  However I don't know where else to turn other than start ordering my own meds.  

[JackieCalifornia]

You are waiting 5 more months to see a Lyme doc?  Find another one!

As you have found, Lyme does not respond to all antibiotics, and a few weeks of random abx isn't a useful approach.

[cave76]

" I guess it probably varies from person to person."

You can say that in spades and with all caps but leave out the 'probably'. :)
Reading all our testimonials here is valuable---- I never get tired of that.

I used to ping pong back and forth between elation at finding a 'cure' and despair of finding out it wasn't (for me).

Then I 'settled down' and actually started learning about the disease while still enjoying the individual 'testimonials'.

The sad news is Lyme has become so politicized. That muddies the waters and a person has to learn just who McSweegan is. And Steere. And Sue O'Connell.  Plus how to get treatment for themselves.

[Ephedra]

Thanks everyone for continuing to share your experiences!  It helps a lot!

I think I need to lower my expectations.  I'd just read how some people are doing so great after treatment and I'd start getting excited. Then I'd start finding others that weren't so fortunate and continue to have lingering issues.  So yeah, I guess it probably varies from person to person.

I've always been so healthy.  I can't remember ever having the flu or flu like symptoms.  It's basically disabling fatigue, insomnia, bone and joint issues, tinnitus, chills, skin issues, breathlessness, orthostatic hypotension, some psychological components, brain fog, slowed processing, vision decline... ect.  I can't remember ever having a fever in my entire adult life.  My temp is much more likely to be low.  So I could be sick as a dog and be far from feverish. So to a Dr, I wouldn't really be sick then!  The main symptom in a majority of illness seems to be a fever.    

I've ran across Chagas in my research too and I suppose that's always a possibility.  I've seen those bugs that carry the disease, so I know there around here.  

I took Keflex 500 mg tid for a few weeks.  Then when I was finished with that one, I took Amoxicillin x 500 mg tid for about a month.  And now Bactrim DS bid.  I had no obvious herx with any of these antibiotics, maybe they're just not the ones I need.  I got the first two from the dentist.  I take a bunch of supplements and never experienced an obvious herx either.  

This is obviously one complicated disease!  Trying to figure out what co infections may be involved is aggravating.  There’s the Lyme and whatever co and opportunistic infections and then the secondary issues that’s going to cause symptoms too, all mixed together in one.  I feel like I'm being defeated.  I seriously need to get on with treatment!  I can't wait till October!  What shall I do?        

TBI??

Has anyone had the Lab Corp western blot or know anyone that has? Results?        

[cave76]

"Everyone is different"

Should I put that in capital letters? LOL

As counterpoint to the experience of Jackie and I'm sure many others---- I had/have every TBI known.

I was dx'd with Lyme, HGE, HME (now Human Granulocytic Anaplasmosis)  at first.

Bartonella wasn't even 'known' then and certainly no test for tick-borne Bart. But when I did get tested for it---- I was way off the high end of positive.,

Babesia was barely known then and thought to be danger only to people with no spleen. (The test for it was called WA1)  But I finally got a positive when Nick devised a test for B. duncani (which is supposed to be a West Coast variety but now is everywhere.)

I haven't been tested for RMSF but probably have it too. :(
I probably have Chagas also. More on that later in another thread.
And I probably have many many other TBI's --- those not looked for.

My personal history, as far as tick bites, is much murkier than Jackies. Living in an endemic county in CA and on a ranch with dogs, cats, horses etc and giving the dogs a long walk twice a day---- well just imagine.
I had at the very least 5 or 6 known tick bites every winter for  almost 10 years. I can only guess at how many nymphs bit me and dropped off unnoticed.

But, hey---- since the CDC told me that a bulls-eye rash was what to look for----- I never worried because I never got one. And I continued to be fit and healthy even though I wasn't a spring chicken. I can only imagine that my immune system was doing it's job ----- until it couldn't. :(

[JackieCalifornia]

Treatment was just under a year and a half, partly because I was 'lucky' to have only Lyme plus one other relatively easy-to-kill infection (babesia).  The more infections, the more complex the situation and the longer the treatment.  

The more co-infections there are, and if the co-infections are the more complex ones like bartonella, the more complicated the diagnosis and treatment.  Lyme is complex too, but once I was clear of babesia, all focus could be put on Lyme.  

The only rule of thumb is that there is no rule of thumb.  Everyone is different, the different strains of these various illnesses all act differently at some level, everyone's immune system is different, the interaction among the infections confuses the issue, the tests aren't that accurate sometimes, blah blah blah.  Many variables in motion.

Also, sometimes people find out they have one or more 'hidden' infections that couldn't be found until other infections were treated and out of the way.  That prolongs the total treatment time.

My doc only does antibiotics, and there is no post-infection maintenance schedule for that:  when the treatment is done, it's done.  I continue to take vitamins and supplements just on general principles, which I didn't do before I had Lyme.  

But everyone is different, that's for sure.

[sitka35]

Glad to hear you feel you are cured, Jackie!
How long were you in treatment for?
Do you take or do anything now for 'maintenance'?

[JackieCalifornia]

I think I was bitten twice --

-- the first time in summer 2004:  immediately after a trip back East (from Virginia to Massachusetts), wandering around a lot of grassy, woodsy places, I felt mildly lousy:  somewhat fatigued, some heartbeat irregularities, like I was coming down with something, but the feeling never went away.  Never saw a tick or a rash.

-- the second time in summer 2006:  another trip back East, similar grassy/woodsy wandering, but this time the symptoms were worse:  like having the flu, fatigued, headache, irritable.  Over the next few weeks, turned into severe headaches, overall muscle pain, confusion, deep fatigue, visual disturbances (I don't now remember what ... this is taken from my notes back then ... since I couldn't remember anything, I kept daily notes of how I felt so I could sum it up to tell the next doc), ringing ears, memory issues.  

In the fall of 2006, I ended up in the ER twice with heart irregularities, and began my odyssey over the next year through 20 docs, including an ID doc, 2 GPs, 3 endocrinologists, a gastroenterologist, and ear/nose/throat doc, an ophthalmologist, etc.  You name it, I saw it.  

One of those docs finally, in desperation, ran the basic Lyme test, which came back mildly positive, but the doc blew it off because I didn't 'look sick enough'.  I knew however that Lyme is nothing to mess with (my college roommate struggled with it for years), so I took the test result to an LLMD, and in April 2007, I was diagnosed with Lyme and babesia.

From likely first infection to diagnosis was about 3 years.

[cave76]

Thank you. Do you remember how long it was before you finally got treated?
I seem to remember that you've said you 'went through' many docs before dx but I can't remember the time line.

[JackieCalifornia]

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.

[Ricobord]

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.

[cave76]

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.

[Ricobord]

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.

[JackieCalifornia]

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 --

[Ephedra]

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.