Acute tick bite and management

[Myer]

HI ,

Im new to the forum. Im looking for information on how to tell when you go from acute bite to knowing when Lyme is present. My dr has place me on 6 weeks of doxcycline post bite and now waiting 4 weeks before i can have Lyme testing done. I seem to have a slight tingling here and there on my arms/head/legs. Slight joint paints in my fingers and wrists and ankles and knees. Twitching muscles here and there on legs./arms/head.Fair no of bruising whilst on the doxcycline on my legs, wrist and even finger.Slight night sweat but had some prior to bite anyway but seem more regularly since bite. Maybe slight ache on soles or a cramp feet feeling?

People report pain when they have Lyme ; and aches on their soles when they have Bartonella. Are these aches immediately full intensity when people first get them or gradually increase in intensity until they become more noticeable and then painful with increase duration from the original tick bite?

Essentially how soon did people get symptoms out there and knew they had lyme if they didnt have the classic bullrash to signify it. How soon does something show up in the blood tests?

 

[IreneF]

I don't know where you're from but with the ticks we have in the US it takes 24 hours for a tick to transfer the Lyme bacterium. So if you went for a hike in the morning and found the tick in the afternoon you would not get Lyme.

Your doc is doing the right thing. If you have been exposed the antibiotics will kill the bacteria.

If your symptoms are minor, as you describe, then don't worry.

 

[brenda]

@Myer

Unfortunately there is a lot of misinformation on the internet about Lyme disease and the previous post displays this.

I advise you to do your own research regarding Lyme and the best place to start is a dedicated Lyme forum and this is not a Lyme forum so you will get plenty of misinformation here, especially with such a politically sensitive subject.

Testing is fraught with problems especially at the beginning when the immune system has not set up a defence against it. It is often the case that it will happen after taking a short course of antibiotics but I would not take that as gospel nor anything that the majority of people who do not have Lyme say.

A short course of doxy of less than 400 mgs a day might knock down the symptoms but unless it was taken extremely early on, is unlikely to do much apart from sending the bacteria into cyst form. They will appear later greatly increased in number.

Even so, a lot of it is guesswork and as the disease is so serious, no risks should be taken. People take antbx for years for it and are not cured by any means.

It needs a concentrated multi disciplined approach and taking anti microbial herbs for some time during and after treatment is sensible.

Don't mess with this as in the late stage which I have, the body is so autoimmune that very little helps as you cannot boost the immune system at that point and leaky gut is severe

 

[Helen]

@Myer

I fully agree with @brenda. As you have symptoms from the nerve systeme ( tingling and twitching muscles e.g.) I would take this seriously. Try to find an experienced and knowledgeable doctor that will treat you until you are cured.

Edit: @IreneF,
I´m sorry to say that what you tell are the common misunderstandings that make people, and even doctors, mistreat tickborne diseases.

- A tick may transmit infections when they bite. There is no "free limit".

- Antibiotics don´t always kill the bacterias. 10 % of the patients get a hard time trying to get well. It´s very important to be properly treated from the beginning.

- Myers´ symptoms aren´t "minor" as some of them are neurological.

 

[brenda]

@Myer
Which country are you in? If it is the UK then you may have to buy extra doxy yourself.

 

[Myer]

Hi .Thanks for all your replies. Im from Australia. I find it hard to find what management plan in Australia cause its so political sensitve there with medicals who still denies it. My lyme dr says 6 weeks should be good but i pretty anxious cause of all these symptoms and ive read dr Howoritz book where he seems to hit it pretty hard. In Australia its very hard to find a dr who willing to treat lyme and if they treating they are not taking new clients atm.

He says that im need to be off the antibiotics for at least 4 weeks before having blood test;so i really cant do anything at the moment except take my antioxidants Should i start taking herbs whilst waiting? Does herbs affect the blood test results and shifts the lyme to cyst form like doxcycline on its own.

 

[brenda]

This is the most famous herbal treatment:

http://buhnerhealinglyme.com/

The herbs will not affect the blood test. Are you on 400 mg doxy a day? (2x 200). I have heard very few who have been treated successfully with antbx.

You need to take control and throw everything you can at it. Most have to go it themselves even buying the extra antibx they need if they choose this way.. Educate yourself.

 

[Undisclosed]

Im new to the forum. Im looking for information on how to tell when you go from acute bite to knowing when Lyme is present. My dr has place me on 6 weeks of doxcycline post bite and now waiting 4 weeks before i can have Lyme testing done. I seem to have a slight tingling here and there on my arms/head/legs. Slight joint paints in my fingers and wrists and ankles and knees. Twitching muscles here and there on legs./arms/head.Fair no of bruising whilst on the doxcycline on my legs, wrist and even finger.Slight night sweat but had some prior to bite anyway but seem more regularly since bite. Maybe slight ache on soles or a cramp feet feeling?

People report pain when they have Lyme ; and aches on their soles when they have Bartonella. Are these aches immediately full intensity when people first get them or gradually increase in intensity until they become more noticeable and then painful with increase duration from the original tick bite?

Essentially how soon did people get symptoms out there and knew they had lyme if they didnt have the classic bullrash to signify it. How soon does something show up in the blood tests?

Welcome to Phoenix Rising @Myer

A six week course of doxy clears up a lyme infection in the majority of people. I wouldn't jump to any conclusions before the course of AB's is finished and you have received the results of you lyme test. The symptoms you are experiencing could well be side-effects to the doxy.

 

[Undisclosed]

@Myer

Unfortunately there is a lot of misinformation on the internet about Lyme disease and the previous post displays this.

@brenda if you are going to make claims that members are posting misinformation, then please support your claims with information that supports what you have said.

I advise you to do your own research regarding Lyme and the best place to start is a dedicated Lyme forum and this is not a Lyme forum so you will get plenty of misinformation here, especially with such a politically sensitive subject.

I believe myer is doing her own research. Are you saying that because Phoenix Rising is not dedicated to just Lyme then "plenty of" the information posted is 'misinformation' So I guess what you post related to Lyme could also be misinformation then? This forum as well as 'dedicated' Lyme forums can contain accurate information as well as misinformation and yes it's best to do one's homework by researching sites that contain well-researched accurate information.

Testing is fraught with problems especially at the beginning when the immune system has not set up a defence against it. It is often the case that it will happen after taking a short course of antibiotics but I would not take that as gospel nor anything that the majority of people who do not have Lyme say.

Lyme testing is fraught with problems. How about some supporting information relating to what you have said rather than just saying that people who don't have lyme don't know anything. I think many here are knowledgeable about lyme, ME/CFS, FM etc.

A short course of doxy of less than 400 mgs a day might knock down the symptoms but unless it was taken extremely early on, is unlikely to do much apart from sending the bacteria into cyst form. They will appear later greatly increased in number.

A course of doxy for 6 weeks after being infected usually knocks the infection out.

 

[brenda]

@Myer

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.

Many many folk with Lyme accepted the party line to their regret. Would you rather listen to people who have Lyme and have spent a great deal of time doing their own research and have shared their experiences on Lyme forums where the party line supporters are soon given short shift, or would you want to end up like them, with a severe often intractable disease by listening to the medical establishment that has vested interest in their policies. Your call.

 

[brenda]

"What is very clear is that B. burgdorferi has been isolated alive from both animals and humans despite administration of antibiotics that are deemed curative by IDSA and CDC. More alarmingly, this organism has also been isolated alive from humans after antibiotic therapies measured in many months to years, when the administered therapies are far in excess of what is declared curative by these same agencies."

http://www.huffingtonpost.com/dana-parish/yale-trained-doctor-refut_b_11291116.html

 

[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.

Please provide research results, scientific articles, epidemiological research results. medical statistics that indicate the 'hundreds of thousands of people with Lyme have discovered" that they were not cured by 4-6 weeks of antibiotic therapy. Published studies on antibiotics say differently.

I prefer to follow scientific research etc, which you refer to as 'conventional' medicine as opposed to 'unconventioanal' medicine? Rather than look at research, statistics that state that antibiotic therapy is effective for most cases of initial infections you refer to 'dark field microscopy which can’t even be offered as a legitimate diagnostic test or treatment given the miniscule amount of research that might support it. What huge force? The force of people promoting quack treatments, the force of people offering information that can't be scientifically supported, or the force of people who write stuff on the internet as fact but when asked don't provide any science to back up their statements.

Many many folk with Lyme accepted the party line to their regret. Would you rather listen to people who have Lyme and have spent a great deal of time doing their own research and have shared their experiences on Lyme forums where the party line supporters are soon given short shift, or would you want to end up like them, with a severe often intractable disease by listening to the medical establishment that has vested interest in their policies. Your call.

What party line? End up like who? The medical establishment? My call would be to look at actual research. I think the majority of members of Phoenix Rising actually will offer a more balanced view because they will weigh information from all sorts of sources rather than actively look for information that they agree with and ignore the rest -- it's called cognitive bias and really isn't a good way of getting at the truth.

 

[duncan]

Widely acknowledged estimates place the percent of Lyme patients uncured (ie. remain symptomatic) by IDSA-recommended treatment protocol at up to 20%. I have seen higher estimates; I have seen lower estimates as well.

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.

 

[Undisclosed]

Widely acknowledged estimates place the percent of Lyme patients uncured (ie. remain symptomatic) by IDSA-recommended treatment protocol at up to 20%. I have seen higher estimates; I have seen lower estimates as well.

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.

But where are the actual statistics that support this? Where does the 350,000 come from? Where does the 20 percent come from?

 

[duncan]

But where are the actual statistics that support this? Where does the 350,000 come from? Where does the 20 percent come from?

Sorry, bad brain day.

You can find the 10-20% number in the now dated 2006 IDSA Guidelines, but they come from old mainstream studies that date back to the 80's. They are cited regularly, including by Johns Hopkins in its recent persister-cell efforts.There have been counter numbers put forth by ILADS types that suggest higher percentages. There has in the last 12 months been a revisionist percent thrown out by an IDSA type that says only up to 5%. But the "up to 20%" is pretty much accepted, if only because it has been grandfathered in so to speak.

In 2013 or 2014, the US 30,000 annual infected number leapt 10-fold as a govt study incorporated insurance claims along with actual reported numbers, and the new estimate that is accepted by IDSA and ILADS alike was 300,000 at that time. I saw the 350,000 estimate for 2016, but can't recall where - if you like, you can run with the 300,000 number. I don't believe anyone disputes that estimate.

 

[Undisclosed]

I would prefer to see more recent figures re: the 20 percent and from more than one dated source.

If the numbers in the 300,000 range are correct then where is the data that gives how many of these cases have been treated with antibiotics and where is the data that shows that in 20 percent of the cases, AB treatment failed?

 

[duncan]

The up to 10-20% is based on many studies that, yes, date back to the 90's and even 80's, but have been addressed many times since then. IDSA supporters have referenced those numbers for many years. Most recent estimates likely come from ILADS members who actually challenge the 20% figure, arguing that it is higher. On the other hand, as I also mentioned, at least one notable IDSA person is arguing the 20% is too high, and that the likely number is no higher than 5%.

But the up-to-20% figure is the most widely accepted estimate to date, by both sides of the aisle. I am feeling too poorly to dig up sources, so no one has to take my word on this.

The 300,000 cases are 2T positive cases or presented with an EM, if memory serves me. There is absolutely no reason to suspect that any meaningful portion would not have been treated - we are talking about insurance records in part, after all.

@Kina, if the IDSA uses this 10-20% number, and the IDSA Guidelines are the most conservative, I think it is fair to use them. There is an argument that the recent 5% estimate may be a response to the outcry that arose after the official US estimates rose to 300,000 - it was easy for anyone to suggest that possibly 60,000 Lyme patients every year were being jettisoned from meaningful care after that number was released. And on the heels of that, the three major independent persister studies came out - Lewis and Zhang and Embers - that demonstrated that IDSA-receommended therapies could fail to eradicate persisters in vitro, potentially contradicting a long-standing argument about the virtually universal efficacy of meds like doxy and Rocephin.

I think it is important to emphasize that @Kina's point is valid - most people who get Lyme are cured with standard therapy.

 

[brenda]

The very sickest patients, who almost universally continue to decline under suchtreatment protocols, have found their way to
a group of clinicians and researchers whose studies and experience stand in powerful opposition to the findings and opinions at Yale. These doctors, including such experts as psychiatrist Brian Fallon of Columbia Presbyterian and Dr. Willy Burgdorfer, the National Institutes of Health scientist who discovered the Lyme spirochete, Borrelia burgdorferi, say that an audit of the peer-
reviewed literature reveals no evidence that infection cannot survive the standard 4 weeks of antibiotic treatment.

Instead, these clinicians and researchers contend, patients with continuing symptoms are usually ill because the Borrelia burgdorferi spirochete has never been eradicated from the body. Their views are best expressed by the International Lyme and Associated Diseases Society (ILADS,) a professional medical and research organization whose members include physicians with international reputations for treating chronic Lyme disease and related complications, including the co-infections. ILADS is based in Andover, Maine.

While double-blind studies of simple antibiotic protocols have been inconclusive, dozens of peer reviewed studies in microbiology and cell biology journalsnonetheless indicate that active, ongoing spirochetal infection is the cause of the persistent symptoms in chronic Lyme disease. In fact, notes ILADS, there has never in the history of this illness been one study that proves even in the simplest way that 30 daysof antibiotic treatment cures Lyme disease. However there is now an abundance of research from around the world showing that the Lyme disease spirochete can persevere.vii[7]


Much of it comes from scientists at institutions like Yale and Tufts. In 1990, for instance, Tom Schwan and a team
that included, among others, researchers from the Rocky Mountain Laboratory, National Institute of Allergy and Infectious
Diseases (NIAID,) part of NIH, found that “active cases of Lyme disease may show clinical relapse following an tibiotic therapy. The latency and relapse phenomena suggest that the Lyme disease spirochete is capable of survival in the host for prolonged periods of time,” the report said.

To determine this , they studied 63 patients with erythema migrans, the signature skin lesion of Lyme disease, removing the active edge of the rash for biopsy and examining growth in test tube cultures. “Sixteen biopsies yielded spirochetes after prolonged incubations of up to 10.5 months,” the team reported, “suggesting that Borrelia burgdorfe
ri may be very slow to divide in certain situations.”

Their conclusion: “Some patients with Lyme borreliosis may require more than the currently recommended two to three week course of antibiotic therapy to eradicate strains of the spirochete which grow slowly viii[8"

https://lymediseaseassociation.org/images/pdf/ConflictReport.pdf

 

[Valentijn]

@Kina, if the IDSA uses this 10-20% number, and the IDSA Guidelines are the most conservative, I think it is fair to use them.

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.

 

[duncan]

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.

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

I was refused both testing and treatment 20 years ago, even though I went to a clinic with embedded deer ticks. I was told to come back if and when I developed any symptoms. But two years ago my young niece had a single embedded tick, and she immediately was put on a course of amox (as opposed to doxy for adults).

Even the IDSA acknowledges that Lyme & Company are more difficult to treat in later stages. So yes, it is better to treat sooner than later. I don't think the treatment protocol used to be for 6 weeks - I think it was for four weeks.