Acute tick bite and management

[Valentijn]

The protocol until recently used to be withhold treatment until symptomatic, preferably, as you know, presenting with the bull's-eye rash. So no treatment prophylactically. Symptoms would have been present to some extent in a majority of cases.

It's different now. Now most can be treated right away

So the persistence figures from 2006 probably aren't applicable to someone who is getting treated very soon after exposure. Hence, irrelevant to @Myer's situation.

 

[duncan]

Well, I would be reluctant to claim they are irrelevant. People can present with symptoms very soon after being bitten, @Valentijn. Everyone is different. So some of those "up-to-20 %" would have received treatment very quickly, I am thinking. But just because someone has symptoms doesn't necessarily mean the infection has leapt to late stage - the bull's eye rash is early stage, for instance. If memory serves me, the EM appears on average eight days after the bite, but it can be as soon as within a day or as late as 30 days or more (or never appear at all).

The fact that @Myer received treatment very soon is a very good thing. Hey, most studies support the notion that the majority of even late stage sufferers see symptom resolution with sufficient treatment.

 

[Undisclosed]

What Kina is expressing is the conventional medical view and hundreds of thousands of people with Lyme have discovered that, no they were not cured by four or six weeks of doxy, no, their continuing symptoms really were active infection, proven by dark field microscopy. As you can see there is a huge force against what people with Lyme are experiencing, with doctors who support them often anonnomously because of the backlash they get for ignoring the party line.

After quite a bit of research, the 'hundreds of thousands of people with lyme' are not cured by four to six weeks of doxycycline treatment appears to be unsubstantiated and an example of misinformation that can be found on the internet related to Lyme disease. Stating that this has been proven by 'dark field microscopy' is also misinformation. As I mentioned before, dark field microscopy is fraught with issues:

One study which had healthy controls

With some delay, the results of this ‘counter-study’ have finally been published (2). These results show that the microscopy method is unsatisfactory for Lyme diagnostics: the researchers found ‘Borrelia spirochetes’ and ‘Babesia’ in most of the subjects, but more in healthy subjects than in chronic Lyme patients. This presumes that they do not perceive Borrelias, but dead structures or at most other (harmless) micro-organisms. No attempt was made to discover what the visible structures under the microscope actually were.

http://www.tekenbeetziekten.nl/casting-a-shadow-over-dark-field-microscopy/

Assuming that this long-standing 20% figure is in the ball park, then 20% of 350,000 Lyme cases annually, in the US alone, can clearly climb into the hundreds of thousands territory quickly.

I think @duncan that it wouldn't be correct to say that 20% of the 350,000 annual Lyme case are not getting cured by AB's. I can't find any evidence to support this 20 percent. What I did find was that people are more likely to have lingering symptoms after treatment if they do not get treatment promptly.

So for those with 'Early Localized Lyme Disease' - the lyme hasn't spread throughout the body and the 10 - 20 percent failure rated doesn't apply here. Some report symptoms after the course of AB's are finished which disappear with time. Of course, there are cases where the symptoms don't go away. It's not 100 perccnt.

For those with 'Disseminated Lyme Disease' -- the bacteria have begun to spread throughout the body and the 10 - 20 percent doesn't seem to apply here from what I have read. Again antibiotics seem to work for the majority of cases.

For those with 'Late Disseminated Lyme Disease' when the the bacteria have spread throughout the body, it appears that 10-20 percent still have symptoms after treatment.

That makes sense to me because left untreated to the late stage, one can get long-term arthritis, heart issues, nerve damage, paralysis, vision problems and the damage may linger even after AB's. The body has been damaged and antibiotics are not going to repair this damage.

When I am actually trying to do here is to point out to @Myer that the earlier one is treated the better the outcome.

But is that for people treated for 6 weeks immediately after being bitten? Or is it for people who were not treated until after symptoms developed?

The problem with persistent Lyme develops when the bacteria disseminates into tissues where it's easier to hide out from antibiotics. There's almost no chance of that happening if treatment starts very soon after exposure.

This seems to be the case.

 

[duncan]

When I am actually trying to do here is to point out to @Myer that the earlier one is treated the better the outcome

Yes, emphatically.

I think @duncan that it wouldn't be correct to say that 20% of the 350,000 annual Lyme case are not getting cured by AB's. I can't find any evidence to support this 20 percent. What I did find was that people are more likely to have lingering symptoms after treatment if they do not get treatment promptly.

I think I qualified that with an " ie remains symptomatic" or something to that extent. This is a central issue in the Lyme wars, since there is no way to prove someone has been cured. The best metric according to most patients and many clinicians is one based on symptoms. But the whole symptom thing may have been thrown from its logical orbit back in 1983 when a study split Lyme patient symptoms into major and minor categories - and it's never been the same since in terms of accrediting patient reports.

The up to 20% applies to all cases, if Im not mistaken, and you're right @Kina, in that it represents persistent symptoms. The remaining issue is whether those symptoms are due to persistent infection on one side of the spectrum - or the aches and pains of everyday life on the other. As the symptoms of Lyme frequently resemble those of ME/CFS, can you imagine pwME being told by one of the most powerful medical agencies in the world that their symptoms are nothing more than the aches and pains of everyday life?

 

[duncan]

After quite a bit of research, the 'hundreds of thousands of people with lyme' are not cured by four to six weeks of doxycycline treatment appears to be unsubstantiated and an example of misinformation that can be found on the internet related to Lyme disease

Technically, @brenda may be correct if she is gauging worldwide, even if one embraces the lower 5% estimate. One needs to remember that for those who remain symptomatic after conventional Lyme treatment, the notion that the disease has been eradicated can be as unsubstantiated in many cases as that they are still infected.

 

[Undisclosed]

The up to 20% applies to all cases, if Im not mistaken, and you're right @Kina, in that it represents persistent symptoms. The remaining issue is whether those symptoms are due to persistent infection on one side of the spectrum - or the aches and pains of everyday life on the other. As the symptoms of Lyme frequently resemble those of ME/CFS, can you imagine pwME being told by one of the most powerful medical agencies in the world that their symptoms are nothing more than the aches and pains of everyday life?

I read quite a few studies and looked at information presented by different Governments, Lyme groups etc and I can't find one single instance where it states that 20 percent applies to all cases or that 20 percent of those treated with AB's suffer from 'persistent' symptoms and I am not referring to 'aches and pains' of life here. It's very difficult to find answers when people keep repeating things on websites but fail to provide any links to statistics.

Technically, @brenda may be correct if she is gauging worldwide, even if one embraces the lower 5% estimate. One needs to remember that for those who remain symptomatic after conventional Lyme treatment, the notion that the disease has been eradicated can be as unsubstantiated in many cases as that they are still infected.

What brenda said was:

hundreds of thousands of people with Lyme have discovered that, no they were not cured by four or six weeks of doxy, no, their continuing symptoms really were active infection, proven by dark field microscopy.

This is absolutely misinformation -- a grandiose statement that has nothing to back it up.

 

[duncan]

I read quite a few studies and looked at information presented by different Governments, Lyme groups etc and I can't find one single instance where it states that 20 percent applies to all cases or that 20 percent of those treated with AB's suffer from 'persistent' symptoms and I am not referring to 'aches and pains' of life here.

Aach. Simply go to the IDSA Guidelines if you don't want to take my word for it. Better yet, go to the most recent Zhang (from Johns Hopkins) press release on his Lyme persister research - if I recall correctly, he cites that number in that release, and that release came within the last few months. One earlier by him was dated Feb 10 2016, and was entitled "Eradication of Biofilm-like Microcolony Structures by Bb...etc." Sorry, can't recall how to link, but you should be able to find it based on that profile. He specifies "10-20%" of Lyme patients. Aucott, also of Johns Hopkins, I think references the up-to-20% estimate quite liberally. It is widely referenced and used, for goodness sake. Johns Hopkins is an historical bastion of IDSA dogma. Also, the "aches and pains" reference comes directly from those IDSA Lyme Guidelines, and it is infamous in Lyme circles. You cannot be expected to know this after a cursory few hours of research, naturally.

What brenda said was:

This is absolutely misinformation -- a grandiose statement that has nothing to back it up.

Dark field microscopy aside, it is not. It is simple arithmetic.

 

[duncan]

@Kina, here are just two quotes from the IDSA Lyme Guidelines. They highlight the range of estimates for the prevalence of persistent symptoms after treatment.

1)"Overall, "minor" signs and symptoms after treatment occurred in about 45% of patients." Remember I had alluded earlier to the controversial splitting of symptoms into 'major' and 'minor'?
2) "...10% of subjects were considered to have treatment failure on the basis of continuing symptoms..."

These are just two references to persistent symptoms following treatment in the IDSA Lyme Guidelines. There are others. And there are many, many studies that report on persistent symptoms after treatment, and they range all over the place. When I tell you that the range typically referenced is 10% to 20%, I say so after years of reading pertinent Lyme studies or informed conversations almost daily.

 

[IreneF]

Persistent symptoms don't necessarily indicate persistent spirochetes. It can take a long time to recover from an infection, even after you are cured; you could have suffered permanent damage from the infection (mentioned above); you can have an auto-immune response; or you can have something like a post-viral syndrome.

 

[justy]

@duncan - hi!
I'm not well enough, after failed Lyme treatment (again) has left me more sikc than before, but just wanted to ask what dose of Doxy are you on?

I see people in the UK treated immediately with Doxy and have no further symtpoms. On the other hand if the dose isn't high enough and or you also have co infections Like Bart, then another drug may be helpful.

You are lucky to have caught it early, hopefully the dose is high enough and with luck could make a full recovery. If you still have symtpoms after the doxy is finished then I would be looking for a lyme literate Dr that can help - not easy in Oz, but there si one I think?

 

[duncan]

Hi @justy ! I'm no longer on doxy. They caught it way too late in me. ETA: Er, it occurred to me after I wrote this that your question my not be directed at me - if so, nevermind.

Either way, I agree with you that @Myer is going about it the right way in regards to getting treated right away.

 

[justy]

Hi @justy ! I'm no longer on doxy. They caught it way too late in me. ETA: Er, it occurred to me after I wrote this that your question my not be directed at me - if so, nevermind.

Either way, I agree with you that @Myer is going about it the right way in regards to getting treated right away.

Doh! sorry I am not with it at all at the moment...yes the question re Doxy was for the poster, not you. About twenty years too late in me also.

 

[Myer]

Thanks guys. quite a lot to process. Sounds like i need to bury my head in research for awhile to research more on the the topic. Will start with exploring more of the main approaches. i think they are Howoritz, buhner, zhang, cowen therapy from what ive come across.

My dosage for the 6 weeks was 100mg twice a day.