Re: response to treatment

[Guest guest]

Thank you very much for your comments. It would be nice to know if all these

scientists in the U.S. Europe and elsewhere were working collaboratively--or at

least sharing their research with each other. This is a worldwide (well,

Northern Hemisphere) epidemic. After reading Cure Unknown by Pamela Weintraub, I

felt discouraged because she exposes the emnity and competition among different

research groups. There's a lot of ego, prestige and grant money at stake--which

she brilliantly explores as a science journalist whose entire family became

infected and seriously ill. Not to mention the financial ties causing conflict

of interests of the majority of panel members of the IDSA who set the guidelines

for treatment. Is this a problem in Europe as well? The Canadian National

Health Service (or whatever they call it) hasn't even officially recognized that

Lyme & Co exists in Canada and is spreading. I have a friend who lives most of

the year in Nova Scotia. I warned her that there have been documented cases

there. She was well aware of that--she runs a rustic resort in the forest. She

commenedt as of last week there was no snow on the ground--highly unusual.

Kim

[ ] response to treatment

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> I've heard that when someone doesn't respond to antibiotics for Lyme it may

be due to untreated co-infections. These co-infections can be tricky to

diagnose (tests not accurate).

yes, that is a possible cause; statistically people with Borrelia plus

coinfections respond less well to treatment (less improvement, more relapse

etc.), especially with coinfections that are immune suppressive like Babesia.

The same goes for people who have multiple Bb strains, something that is not

detected with the normal Lyme tests.

But there are probably other factors and this is one of the major issues that

needs to be resolved. One suggestion (from Stoney Brook / Ben Luft) is that

Borrelia strains may be very different regarding how aggressive, persistent or

resistant to antibiotics they are. In that case the outcome will mostly depend

on the strain that you got and not on the treatment (and that would be bad news

for those of us who have been struggling to get treatment results for a long

time ...).

> It seems like no two people respond the same way with these tick-borne

infections.

yes, I'm sure there is huge individual variation and we don't know why. Is it

because of their genetics, because of the Bb strain, because of coinfections

(probably many are not monitored yet, the tick is a real pathogen zoo), because

of specific environmental factors?

> I've heard of people who were asymptomatic for years, then suddenly had a host

of health problems which turned out to be Lyme related.

A German MD in an area with lots of LD cases is doing a longtime study into

Lyme. He is expected to publish his results soon, however up to now nothing in

the official scientific literature. The finding in Germany is that about 90% of

people who are infected with Borrelia are asymptomatic for some time, often

years; only 10% develop obvious LD symptoms pretty soon after infection. But his

impression is that ALL of the infected patients will develop Lyme disease within

about 8 years.

This would be an interesting twist to the 'false-positives' stories of the

hardliners. It also fits in with the 'two-step' hypothesis for Lyme, that Bb

infection is not the only requirement for getting LD. There has to be another

factor involved.

[Guest guest]

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>

> Thank you very much for your comments. It would be nice to know if all these

scientists in the U.S. Europe and elsewhere were working collaboratively--or at

least sharing their research with each other. This is a worldwide (well,

Northern Hemisphere) epidemic. After reading Cure Unknown by Pamela Weintraub, I

felt discouraged because she exposes the emnity and competition among different

research groups. There's a lot of ego, prestige and grant money at stake--which

she brilliantly explores as a science journalist whose entire family became

infected and seriously ill. Not to mention the financial ties causing conflict

of interests of the majority of panel members of the IDSA who set the guidelines

for treatment.

yes, this is a big part of the problem. I think the same problem exists in all

developed temperate regions. Cure Unknown is an excellent book, there are just a

few minor issues where a disagree (e.g. pointing at deer as a major cause the

problem; I think that is really unjustified, especially if you look outside the

US).

Science usually cleans up its act, but it can take a very long time (one

generation), and we don't have that time available with this rapidly escalating

epidemic.

> Is this a problem in Europe as well?

in Europe, and especially in anglosaxon countries like UK and Netherlands,

mainstream medicine looks to the US (= IDSA) for guidance. Some parts of Europe

like Germany and some former Eastern Block countries are a bit better (more

independent thinking), but even there the same issues apply to some extent. The

mainstream view is dominated by IDSA and the Big Pharma fellows.

In EU we also have widespread denial by the authorities and most of the medical

community. Treatment options are even worse here, we have no such thing as ILADS

docs or herbal medicine (except Germany that has a tradition of 'alternative'

medicine).