Re: Dr. Grim's first ever patient with a tick.

[Guest guest]

More then likey ticks can carry other unknown illnesses.

>

> Just learned how to remove ticks correctly.

>

> So reviewed this CDC site which I would take as state of the art.

>

>

> http://www.niaid.nih.gov/topics/lymedisease/understanding/pages/chronic.aspx

>

> Lyme Disease

>

> " Chronic Lyme Disease "

>

> What is " chronic Lyme disease " ?

>

> Lyme disease is an infection caused by the bacterium Borrelia

> burgdorferi. In the majority of cases, it is successfully treated with

> oral antibiotics.

>

>

> The term " chronic Lyme disease " (CLD) is very confusing, as it has

> been used to describe people with different illnesses. While the term

> is sometimes used to describe illness in patients with Lyme disease,

> in many occasions it has been used to describe symptoms in individuals

> who have no evidence of a current or past infection with B.

> burgdorferi. (Infect Dis Clin N Am 2008; 22:341-60). In other cases,

> " CLD " is used in patients who have non-specific symptoms (like fatigue

> and pain) after treatment for Lyme disease, but who have no evidence

> of active infection with B. burgdorferi. Physicians sometimes describe

> these patients as having post-Lyme disease syndrome (PLDS).

>

> Because of the confusion in how the term CLD is employed, experts in

> this field do not support its use (New Eng. J. Med. 2008; 357:1422-30).

>

>

> How is Lyme disease treated?

>

> For early Lyme disease, a short course of oral antibiotics such as

> doxycycline or amoxicillin is curative in the majority of the cases.

> In more complicated cases, Lyme disease can usually be successfully

> treated with three to four weeks of antibiotic therapy.

>

>

> In patients who have non-specific symptoms after being treated for

> Lyme disease, and no evidence of active infection (patients with

> PLDS), studies have shown that more antibiotic therapy is not helpful

> and can be dangerous.

>

>

> Has NIAID looked at the potential benefits of long-term antibiotic

> therapy on PLDS?

>

> Yes. In an effort to address the confusion regarding appropriate

> therapy, NIAID has funded three placebo-controlled clinical trials on

> the efficacy of prolonged antibiotic therapy for the treatment of

> PLDS. The published results were subjected to rigorous statistical,

> editorial and scientific peer review.

>

> These trials were designed to ensure that several key parameters were

> addressed:

>

> The susceptibility of Borrelia burgdorferi to the antibiotics used

> The ability of the antibiotics used to both cross the blood-brain

> barrier and access the central nervous system and to persist at

> effective levels throughout the course of therapy

> The ability of the antibiotics used to kill bacteria living both

> outside and inside mammalian cells

> The safety and welfare of patients enrolled in the trials

> The first clinical trial, which included two multicenter studies,

> provided no evidence that extended antibiotic treatment is beneficial

> (New Eng. J. Med. 345:85-92, 2001). In those studies, physicians

> examined long-term antibiotic therapy in patients with a well-

> documented history of previous Lyme disease, but who reported

> persistent pain, fatigue, impaired cognitive function, or unexplained

> numbness. Those symptoms are common among individuals reporting PLDS.

> Patients were treated with 30 days of an intravenous (IV) antibiotic

> followed by 60 days of an oral antibiotic.

>

> These studies reinforced the evidence that patients reporting PLDS

> symptoms have a severe impairment in overall physical health and

> quality of life. However, results showed no benefit from prolonged

> antibiotic therapy when compared with placebo in treating those

> symptoms.

>

> In another study, published in 2003, researchers examined the effect

> of 28 days of IV antibiotic compared with placebo in 55 patients

> reporting persistent, severe fatigue at least 6 months following

> treatment for laboratory-diagnosed Lyme disease. Patients were

> assessed for improvements in self-reported fatigue and cognitive

> function. (Neurology 60:1923-30, 2003).

>

> In that study, individuals receiving antibiotics did report a greater

> improvement in fatigue than those on placebo. However, no benefit to

> cognitive function was observed. In addition, six of the study

> individuals had serious adverse events associated with IV antibiotic

> use, four requiring hospitalization. Overall, the study authors

> therefore concluded that additional antibiotic therapy for PLDS was

> not supported by the evidence.

>

> More recently, a study supported by the National Institute of

> Neurological Disorders and Stroke, again showed that long term

> antibiotic use for Lyme disease is not an effective strategy for

> cognitive improvement (Neurology 2008; 70(13):992-1003). Researchers

> compared clinical improvement following 10 weeks of IV ceftriaxone vs.

> IV placebo. The patients were treated for Lyme disease and presented

> with objective memory impairment tests. In a complicated statistical

> model, the ceftriaxone group showed a slightly greater improvement at

> 12 weeks, but at 24 weeks, both the ceftriaxone and the placebo groups

> had improved similarly from baseline. In addition, adverse affects

> attributed to IV ceftriaxone occurred in 26 percent of patients. The

> authors conclude that because of the limited duration of the cognitive

> improvement and the risks involved, 10 weeks of IV ceftriaxone was not

> an effective strategy for cognitive improvement in these patients and

> more durable and safer treatment strategies are still needed.

>

>

> If long-term antibiotic therapy is not effective why do some

> individuals report improved symptoms following such treatment?

>

> Carefully designed, placebo-controlled studies have failed to

> demonstrate that prolonged antibiotic therapy is beneficial. Although

> isolated success stories are always good to hear, such reports alone

> are not sufficient grounds to support a therapeutic approach.

>

> A positive response to prolonged antibiotic therapy may be due to the

> placebo effect, which was reported as high as 40 percent in the

> studies described above.

>

>

> I thought antibiotics were safe. If so, what is the harm in

> prescribing them?

>

> All medications may have side effects, including antibiotics. Because

> few antibiotics are highly specific, they not only destroy " bad "

> bacteria but also kill many of the beneficial bacteria that inhabit

> the body. These good bacteria play a critical role in maintaining

> general health and preventing disease-causing organisms from

> establishing a foothold. Serious, potentially fatal antibiotic-

> associated infections remain a major concern in hospitals, and thus

> antibiotic use is monitored carefully. Intravenous antibiotics, such

> as those sometimes promoted for treating symptoms attributed to CLD,

> require lines and catheters that present an avenue for dangerous

> secondary infections to take hold.

>

> Patients also risk negative and sometimes serious reactions to the

> antibiotics themselves. In the first studies described above, 25

> percent of the patients in the treatment group experienced study-

> related adverse events (New Engl. J. Med. 345:85-92; 2001). In the

> clinical trial looking at cognitive function (Neurology 60:1923-30,

> 2003), six patients experienced serious adverse events, four of whom

> required hospitalization. In the most recent trial for cognitive

> improvement (Neurology 70(13):992-1003, 2008) 26 percent of patients

> given IV therapy experienced adverse events compared with seven

> percent for the IV placebo group.

>

> In addition to personal safety concerns, unnecessary antibiotic use

> contributes to the serious, growing problem of antimicrobial

> resistance. Overuse of antibiotics has led to many bacteria developing

> resistance to the very drugs doctors once used to combat them.

>

[Guest guest]

Wisconsin has one of the highest

rates of Lyme, just under the northeast.

This is lots of research but none

of those studies tested long term treatment. It is as though the research was

designed to fulfill the premise that chronic Lyme isn’t treatable or

doesn’t exist. Show me one to

five years of treatment. Of the two

people I met here, one has been on antibiotics for two years and the other six

years. Each time they go off, they

get sick again. My niece took 3.5

years to go from invalid to graduate school.

The NIH information is the same

as the IDSA information. The problem

is, by following that information, people are not getting diagnosed and are not

getting treatment to get well. Even

CDC admits that its screening protocol understates Lyme by a factor of 10 –

12, and cautions that the ELISA test should never be used for diagnosis.

Here’s some more:

http://www.ncbi.nlm.nih.gov/pubmed/20228716

http://www.ncbi.nlm.nih.gov/pubmed/17578772

NONE of the literature

addresses those, like me, who never received ANY treatment.

I’m attaching an

interesting story about a doc who was diagnosed with ALS. He spent four years on antibiotics. I heard him speak a couple of months ago

and am thinking of switching to the clinic he founded. He appeared quite well but said he’s

only about 90% of where he was before he got sick.

Here is a Canadian clip (like 60

Minutes?) that features my current doctor (in Part I):

http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20091113/w5_lyme_091114/20091114?s_name=W5

The founder of CanLyme (in Part II of the story) says the problem is

ignorance and arrogance. It

presents interesting commentary on the lack of infected ticks in Canada vs, the

infestations a few miles across the border in the U.S. It is a good portrayal of what we should

expect from socialized medicine.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Clarence Grim

Just learned how to remove ticks correctly.

So

reviewed this CDC site which I would take as state of the art.

http://www.niaid.nih.gov/topics/lymedisease/understanding/pages/chronic.aspx

Lyme Disease

" Chronic Lyme Disease "

What is " chronic Lyme disease " ?

Lyme disease is an infection caused

by the bacterium Borrelia burgdorferi. In the majority of cases, it is

successfully treated with oral antibiotics.

The term “chronic Lyme

disease” (CLD) is very confusing, as it has been used to describe people

with different illnesses. While the term is sometimes used to describe illness

in patients with Lyme disease, in many occasions it has been used to describe

symptoms in individuals who have no evidence of a current or past infection

with B. burgdorferi. (Infect Dis Clin N Am 2008;

22:341-60). In other cases, “CLD” is used in patients who have

non-specific symptoms (like fatigue and pain) after treatment for Lyme disease,

but who have no evidence of active infection with B. burgdorferi.

Physicians sometimes describe these patients as having post-Lyme disease

syndrome (PLDS).

Because of the confusion in how the

term CLD is employed, experts in this field do not support its use (New

Eng. J. Med. 2008; 357:1422-30).

How is Lyme disease treated?

For early Lyme disease, a short

course of oral antibiotics such as doxycycline or amoxicillin is curative in

the majority of the cases. In more complicated cases, Lyme disease can usually

be successfully treated with three to four weeks of antibiotic therapy.

In patients who have non-specific symptoms

after being treated for Lyme disease, and no evidence of active infection

(patients with PLDS), studies have shown that more antibiotic therapy is not

helpful and can be dangerous.

Has NIAID looked at the potential benefits of long-term

antibiotic therapy on PLDS?

Yes.

In an effort to address the confusion regarding appropriate therapy, NIAID has

funded three placebo-controlled clinical trials on the efficacy of prolonged

antibiotic therapy for the treatment of PLDS. The published results were subjected

to rigorous statistical, editorial and scientific peer review.

These trials were designed to

ensure that several key parameters were addressed:

The susceptibility of Borrelia burgdorferi

to the antibiotics used

The ability of the

antibiotics used to both cross the blood-brain barrier and access the

central nervous system and to persist at effective levels throughout the

course of therapy

The ability of the

antibiotics used to kill bacteria living both outside and inside mammalian

cells

The safety and welfare

of patients enrolled in the trials

The first clinical trial, which

included two multicenter studies, provided no evidence that extended antibiotic

treatment is beneficial (New Eng. J. Med. 345:85-92, 2001). In those

studies, physicians examined long-term antibiotic therapy in patients with a

well-documented history of previous Lyme disease, but who reported persistent

pain, fatigue, impaired cognitive function, or unexplained numbness. Those

symptoms are common among individuals reporting PLDS. Patients were treated

with 30 days of an intravenous (IV) antibiotic followed by 60 days of an oral

antibiotic.

These studies reinforced the

evidence that patients reporting PLDS symptoms have a severe impairment in

overall physical health and quality of life. However, results showed no benefit

from prolonged antibiotic therapy when compared with placebo in treating those

symptoms.

In another study, published in

2003, researchers examined the effect of 28 days of IV antibiotic compared with

placebo in 55 patients reporting persistent, severe fatigue at least 6 months

following treatment for laboratory-diagnosed Lyme disease. Patients were

assessed for improvements in self-reported fatigue and cognitive function. (Neurology

60:1923-30, 2003).

In that study, individuals

receiving antibiotics did report a greater improvement in fatigue than those on

placebo. However, no benefit to cognitive function was observed. In addition,

six of the study individuals had serious adverse events associated with IV antibiotic

use, four requiring hospitalization. Overall, the study authors therefore

concluded that additional antibiotic therapy for PLDS was not supported by the

evidence.

More recently, a study supported by

the National Institute of Neurological Disorders and Stroke, again showed that

long term antibiotic use for Lyme disease is not an effective strategy for

cognitive improvement (Neurology 2008; 70(13):992-1003). Researchers

compared clinical improvement following 10 weeks of IV ceftriaxone

vs. IV placebo. The patients were treated for Lyme disease and presented with

objective memory impairment tests. In a complicated statistical model, the ceftriaxone group showed a slightly greater improvement at

12 weeks, but at 24 weeks, both the ceftriaxone and

the placebo groups had improved similarly from baseline. In addition, adverse

affects attributed to IV ceftriaxone occurred in 26

percent of patients. The authors conclude that because of the limited duration

of the cognitive improvement and the risks involved, 10 weeks of IV ceftriaxone was not an effective strategy for cognitive

improvement in these patients and more durable and safer treatment strategies

are still needed.

If long-term antibiotic therapy is not effective why do some

individuals report improved symptoms following such treatment?

Carefully designed,

placebo-controlled studies have failed to demonstrate that prolonged antibiotic

therapy is beneficial. Although isolated success stories are always good to

hear, such reports alone are not sufficient grounds to support a therapeutic

approach.

A positive response to prolonged

antibiotic therapy may be due to the placebo effect, which was reported as high

as 40 percent in the studies described above.

I thought antibiotics were safe. If so, what is the harm in

prescribing them?

All

medications may have side effects, including antibiotics. Because few

antibiotics are highly specific, they not only destroy " bad " bacteria

but also kill many of the beneficial bacteria that inhabit the body. These good

bacteria play a critical role in maintaining general health and preventing

disease-causing organisms from establishing a foothold. Serious, potentially

fatal antibiotic-associated infections remain a major concern in hospitals, and

thus antibiotic use is monitored carefully. Intravenous antibiotics, such as

those sometimes promoted for treating symptoms attributed to CLD, require lines

and catheters that present an avenue for dangerous secondary infections to take

hold.

Patients also risk negative and sometimes

serious reactions to the antibiotics themselves. In the first studies described

above, 25 percent of the patients in the treatment group experienced

study-related adverse events (New Engl. J. Med. 345:85-92; 2001). In

the clinical trial looking at cognitive function (Neurology

60:1923-30, 2003), six patients experienced serious adverse events, four of

whom required hospitalization. In the most recent trial for cognitive

improvement (Neurology 70(13):992-1003, 2008) 26 percent of patients

given IV therapy experienced adverse events compared with seven percent for the

IV placebo group.

In addition to personal safety

concerns, unnecessary antibiotic use contributes to the serious, growing

problem of antimicrobial resistance. Overuse of antibiotics has led to many

bacteria developing resistance to the very drugs doctors once used to combat

them.

[Guest guest]

I would think that a rheumatologist would be someone that might help with

Lyme's.

>

> They do. I've tested positive for Bartonella.

>

> Val

>

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of Francis Bill

> SUSPECTED PA

>

>

> More then likey ticks can carry other unknown illnesses.

>

[Guest guest]

Look up Still's disease. This is treated by a rheumatologist. Sx seem very much

like lyme.

> >

> > They do. I've tested positive for Bartonella.

>

[Guest guest]

There does seen to some that say lyme could be affect the autoimmune system.

Since a rheumatologist treats the autoimmune system one might think they might

treat lyme. It could be once antibiotic is tried and only has limited success

other treatments might work.

> >

> > They are generally not considered Lyme-literate. I don't understand why

> > anyone would fool around with a doctor who has no clue how to treat.

> >

> > From: hyperaldosteronism

> <mailto:hyperaldosteronism%40yahoogroups.com>

> > [mailto:hyperaldosteronism

> <mailto:hyperaldosteronism%40yahoogroups.com> ] On Behalf Of Francis Bill

> > SUSPECTED PA

>

> > I would think that a rheumatologist would be someone that might help with

>

[Guest guest]

This site seems to have a lot of information about lyme

http://www.arthritis.org/

You do have to do a search in there search box.

> >

> > If the Lyme spirochetes have entered the brain and nerves, you

> need a

> > neurologist. Why not just see a Lyme-literate MD in the first

> place?

> > That's all they deal with.

>

>

>

[Guest guest]

Francis, I just got home and had a chance to look up Still's disease. It is

like Lyme, Lyme was first discovered when a group of mothers in Lyme, CT

started complaining that far too many children there were developming cases of

juvenile arthritis. Indeed, it was Lyme arthritis, and was treatable with

antibiotics.

Val

> Look up Still's disease. This is treated by a rheumatologist. Sx seem very

much like lyme.

[Guest guest]

Part of the problem is we don't know who is right and who is wrong. Most Dr.

will only work with good science. As Dr Grim says who has financial interest in

lyme. Some on both sides would have financial interest.

> > >

> > > If the Lyme spirochetes have entered the brain and nerves, you

> > need a

> > > neurologist. Why not just see a Lyme-literate MD in the first

> > place?

> > > That's all they deal with.

> >

> >

> >

[Guest guest]

Here is a study from Columbia. From this it would seem that repeated IV

antibiotic isn't recommended.

Featured ResearchAuthors: Fallon BA, Keilp JG, Corbera KM, Petkova E, Britton

CB, Dwyer E, Slavov I, Cheng J, Dobkin J, D, Sackeim HA.

Title: A Randomized, Placebo-Controlled Trial of Repeated IV Antibiotic Therapy

for Lyme Encephalopathy.

Journal: Neurology. 2008; 70 (13); 992-1003; epub 10-07

The study, titled " A Randomized, Placebo-Controlled Trial of Repeated IV

Antibiotic Therapy for Lyme Encephalopathy, " was published in the journal

Neurology in March 2008. The study was led by Principal Investigator

Fallon, M.D., M.P.H., Director of the recently established Lyme and Tick-borne

Diseases Research Center at Columbia University Medical Center

(http://www.cumc.columbia.edu/news/press_releases/fallon_lyme_center.html). The

research was conducted jointly at the Columbia University Medical Center and New

York State Psychiatric Institute and was funded by the National Institute of

Neurological Disorders and Stroke (NINDS).

Dr. Fallon and his research team identified patients with cognitive problems

that developed after being diagnosed with Lyme disease and which persisted or

relapsed despite prior treatment, in order to determine whether patients who

have already received the " standard " course of antibiotic treatment (three weeks

of IV antibiotic therapy), would benefit from an additional 10 weeks of

antibiotic therapy. They also set out to determine whether patients relapse when

taken off antibiotics or whether the alleviation of symptoms is sustained or

enhanced with time.

Study participants (57 subjects: 37 patients with a history of Lyme disease and

20 healthy volunteers) were divided into three subject groups: patients with a

history of treated Lyme disease who were randomized to IV treatment with an

antibiotic called ceftriaxone for 10 weeks; patients with a history of treated

Lyme disease who were randomized to IV placebo for 10 weeks; and, healthy

controls who were tested at the same time points as the patients to help to

control for the practice effect on neuropsychological testing. All patients had

to meet criteria for memory impairment at the start of the study and they were

also required to have documented clinical and serological evidence of a history

of Lyme disease.

Findings from this study, the first placebo-controlled study of chronic

cognitive impairment after treated Lyme disease (also known as persistent Lyme

encephalopathy), demonstrate that patients at the start of the study reported

moderate cognitive impairment, physical dysfunction comparable to patients with

congestive heart failure, and fatigue comparable to patients with multiple

sclerosis. In the study, repeated intravenous (IV) antibiotic therapy was shown

to have moderate short-term benefit in treating cognitive dysfunction compared

to the two control groups together (healthy volunteers and Lyme patients given

IV placebo), but this improvement was not sustained after the antibiotic was

discontinued (p=.04). The specific drug vs placebo comparison at the primary

end point of week 12 fell at the margin of significance (p=.053), raising the

risk slightly that this result may have occurred by chance. Specific

improvement in memory – the primary domain of interest in the cognitive battery

– was not noted at either the primary end-point of week 12 or at the end point

to assess longer-term sustained response (week 24).

On secondary clinical outcome planned analyses, the study investigators also

found that, among those with greater impairment at the start of the study,

significantly greater benefit was noted at week 12 in fatigue, pain, and

physical functioning among those given IV antibiotic compared to those given IV

placebo. Among these IV antibiotic treated patients with greater initial pain

and physical dysfunction, the significantly greater improvement over placebo was

sustained to the six month end-point (the period when patients were off

antibiotics).

In a post-hoc analysis, which reanalyzed the data to determine what the results

would look like if enrollment had been the same as in the Krupp study of

post-treatment Lyme fatigue (Neurology, 2003), the Columbia results were

comparable. The StonyBrook study reported that 64% of ceftriaxone-treated

patients showed clinically meaningful improvement in fatigue compared to 18.5%

of placebo-treated patients. The Columbia study similarly found that 66.7% of

the ceftriaxone group vs 25% of the placebo group showed a significant

improvement in fatigue (p<.05).

The investigators reported that about 19% of patients did experience potentially

serious side effects associated with IV antibiotic therapy, such as thrombi,

systemic infections, allergic reactions, and/or gall bladder disease.

Given the significant risk and the lack of sustained benefit, Dr. Fallon and his

co-authors recommended against the use of a course of 10 weeks of IV ceftriaxone

followed by 14 weeks of no antibiotics as a treatment strategy for a sustained

improvement in cognition. The acute and sustained antibiotic-associated

improvement in pain and physical functioning among subgroups of patients with

greater severity of symptoms was notable as these are among the most disabling

symptoms experienced by patients; however, because these were secondary and not

primary outcome measures, conclusions regarding the benefit of repeated IV

therapy for this set of symptoms must await further investigation.

This NIH-funded study was published in Neurology on-line in October 2007 and in

the journal itself in March 2008.

> > > >

> > > > If the Lyme spirochetes have entered the brain and nerves, you

> > > need a

> > > > neurologist. Why not just see a Lyme-literate MD in the first

> > > place?

> > > > That's all they deal with.

> > >

> > >

> > >