Re: Re: OT: ISDA-proper treatment?

[Guest guest]

Sonya,

This is a great idea. Thanks for all your efforts. I do question the word

" proper " in the group's name because the " proper " treatment is so

individualized and even LLMDs disagree on which treatments are effective. I know

someone who attended a meeting sponsored by ILADS and heard even they were

disagreeing with each other! I strongly urge you to drop the word " proper " and

stick with IDSA DENIES TREATMENT FOR LYME DISEASE. It's a stronger statement

and very true. Otherwise the " experts " on all sides will have a field day with

what's considered " proper " or appropriate treatment. It's up to the patient's

physician to decide what is appropriate treatment--not the IDSA, whose

guidelines allow insurance companies to cut off or deny long term antibiotic

treatment calling it " experimental. "

I don't live near a major city so I can't attend a large rally.

Kim

[ ] Re: OT: ISDA

>

>

>

>

>>

>>

>> In the 80s when HIV/AIDS was identified solely with homosexual

>> activity, there was a lot of discrimination against gays in the

>> U.S., especially among evangelical Christians. Europeans have

>> been generally more tolerant of gays.

>

> I know the situation seems different; I think in EU there also was

> a lot of discrimination, but it was 'not done' do talk about that

> in public - especially in my country. I think in both regions the

> special position of gays played its part; if the first AIDS victims

> had been from another 'minority' group I doubt it would have

> attracted the same attention and money.

>

>

>> The question is how do we, the Lyme community, become more

>> visible? I think there's a lot of fear surrounding tick-borne

>> diseases, as well as a lot of ignorance about how devastating they

>> can be. And the brief news spots I've seen on TV don't really

>> address the key issues in depth.

>

> yes, that is a HUGE issue. I'm not sure if fear for creepy ticks is

> a major issue, I think it is mostly ignorance what it is about.

> Lymies are viewed pretty negatively by the general public. I have

> never heard such a thing regarding people who have chronic Q-fever

> or other chronic disease. Lymies are often portrayed by the media

> as 'people who are always tired'. In most EU countries many of them

> claim disability (in my country often for life - which is very

> strange IMHO; I think many of those claims are not legitimate). And

> the public sees the Lymies only when they feel well and not when

> they feel ill. Even my direct family has a hard time understanding

> that.

>

> We just had the first TV programme in Netherlands two weeks ago

> that had a fair presentation of some of the Lyme issues. They again

> had a patient who was 'very tired' and could not go to school for

> some months, but looked pretty normal on TV - not very convincing.

> But they also showed that in a private Lyme clinic in the south of

> Germany (far away by Dutch standards), about 10% of the patients

> were from the Netherlands. Everyone should wonder what is going on

> there.

> They also showed Dutch patients who went to the Czech republic and

> other Balkan countries for ABX treatments because those treatments

> are not possible in Netherlands (or very difficult to get). One

> patient explained that despite having to pay all the costs herself,

> and despite serious pain and other troubles during the treatment,

> she would do it again if the lyme resurfaces.

>

> We are trying to get more media coverage here this summer, when we

> present new material to our parliament. We are getting more

> coverage in the newspapers, and the old guard from the medical/

> microbiological community is now regularly writing to the

> newspapers about Lyme hysteria. They seem to be getting worried,

> which is a good sign. But the recent IDSA ruling that they won't

> change their Lyme guidelines is a serious bummer

>

>> The book Cure Unknown really covers every aspect of Lyme, but its

>> not exactly on the best-seller list.

>

> yes, one of the best Lyme books I have read.

>

>

>

>

>

[Guest guest]

Good point - " proper " is debatable, " treatment " is not. Agree - better to put

out a simple accurate message. - Robin

[ ] Re: OT: ISDA

>

>

>

>

>>

>>

>> In the 80s when HIV/AIDS was identified solely with homosexual

>> activity, there was a lot of discrimination against gays in the

>> U.S., especially among evangelical Christians. Europeans have

>> been generally more tolerant of gays.

>

> I know the situation seems different; I think in EU there also was

> a lot of discrimination, but it was 'not done' do talk about that

> in public - especially in my country. I think in both regions the

> special position of gays played its part; if the first AIDS victims

> had been from another 'minority' group I doubt it would have

> attracted the same attention and money.

>

>

>> The question is how do we, the Lyme community, become more

>> visible? I think there's a lot of fear surrounding tick-borne

>> diseases, as well as a lot of ignorance about how devastating they

>> can be. And the brief news spots I've seen on TV don't really

>> address the key issues in depth.

>

> yes, that is a HUGE issue. I'm not sure if fear for creepy ticks is

> a major issue, I think it is mostly ignorance what it is about.

> Lymies are viewed pretty negatively by the general public. I have

> never heard such a thing regarding people who have chronic Q-fever

> or other chronic disease. Lymies are often portrayed by the media

> as 'people who are always tired'. In most EU countries many of them

> claim disability (in my country often for life - which is very

> strange IMHO; I think many of those claims are not legitimate). And

> the public sees the Lymies only when they feel well and not when

> they feel ill. Even my direct family has a hard time understanding

> that.

>

> We just had the first TV programme in Netherlands two weeks ago

> that had a fair presentation of some of the Lyme issues. They again

> had a patient who was 'very tired' and could not go to school for

> some months, but looked pretty normal on TV - not very convincing.

> But they also showed that in a private Lyme clinic in the south of

> Germany (far away by Dutch standards), about 10% of the patients

> were from the Netherlands. Everyone should wonder what is going on

> there.

> They also showed Dutch patients who went to the Czech republic and

> other Balkan countries for ABX treatments because those treatments

> are not possible in Netherlands (or very difficult to get). One

> patient explained that despite having to pay all the costs herself,

> and despite serious pain and other troubles during the treatment,

> she would do it again if the lyme resurfaces.

>

> We are trying to get more media coverage here this summer, when we

> present new material to our parliament. We are getting more

> coverage in the newspapers, and the old guard from the medical/

> microbiological community is now regularly writing to the

> newspapers about Lyme hysteria. They seem to be getting worried,

> which is a good sign. But the recent IDSA ruling that they won't

> change their Lyme guidelines is a serious bummer

>

>> The book Cure Unknown really covers every aspect of Lyme, but its

>> not exactly on the best-seller list.

>

> yes, one of the best Lyme books I have read.

>

>

>

>

>

[Guest guest]

Kim,

It won't let me change the name (unless I just can't figure it out).

You don't need to be in a major city. This is going to be held nationwide in

YOUR TOWN, USA.

-Sonya

Sent from my BlackBerry® smartphone with SprintSpeed

[ ] Re: OT: ISDA

>

>

>

>

>>

>>

>> In the 80s when HIV/AIDS was identified solely with homosexual

>> activity, there was a lot of discrimination against gays in the

>> U.S., especially among evangelical Christians. Europeans have

>> been generally more tolerant of gays.

>

> I know the situation seems different; I think in EU there also was

> a lot of discrimination, but it was 'not done' do talk about that

> in public - especially in my country. I think in both regions the

> special position of gays played its part; if the first AIDS victims

> had been from another 'minority' group I doubt it would have

> attracted the same attention and money.

>

>

>> The question is how do we, the Lyme community, become more

>> visible? I think there's a lot of fear surrounding tick-borne

>> diseases, as well as a lot of ignorance about how devastating they

>> can be. And the brief news spots I've seen on TV don't really

>> address the key issues in depth.

>

> yes, that is a HUGE issue. I'm not sure if fear for creepy ticks is

> a major issue, I think it is mostly ignorance what it is about.

> Lymies are viewed pretty negatively by the general public. I have

> never heard such a thing regarding people who have chronic Q-fever

> or other chronic disease. Lymies are often portrayed by the media

> as 'people who are always tired'. In most EU countries many of them

> claim disability (in my country often for life - which is very

> strange IMHO; I think many of those claims are not legitimate). And

> the public sees the Lymies only when they feel well and not when

> they feel ill. Even my direct family has a hard time understanding

> that.

>

> We just had the first TV programme in Netherlands two weeks ago

> that had a fair presentation of some of the Lyme issues. They again

> had a patient who was 'very tired' and could not go to school for

> some months, but looked pretty normal on TV - not very convincing.

> But they also showed that in a private Lyme clinic in the south of

> Germany (far away by Dutch standards), about 10% of the patients

> were from the Netherlands. Everyone should wonder what is going on

> there.

> They also showed Dutch patients who went to the Czech republic and

> other Balkan countries for ABX treatments because those treatments

> are not possible in Netherlands (or very difficult to get). One

> patient explained that despite having to pay all the costs herself,

> and despite serious pain and other troubles during the treatment,

> she would do it again if the lyme resurfaces.

>

> We are trying to get more media coverage here this summer, when we

> present new material to our parliament. We are getting more

> coverage in the newspapers, and the old guard from the medical/

> microbiological community is now regularly writing to the

> newspapers about Lyme hysteria. They seem to be getting worried,

> which is a good sign. But the recent IDSA ruling that they won't

> change their Lyme guidelines is a serious bummer

>

>> The book Cure Unknown really covers every aspect of Lyme, but its

>> not exactly on the best-seller list.

>

> yes, one of the best Lyme books I have read.

>

>

>

>

>

[Guest guest]

Sonya,

I'm very low tech. When you say " it " do you mean something on the computer?

Kim

[ ] Re: OT: ISDA

>

>

>

>

>>

>>

>> In the 80s when HIV/AIDS was identified solely with homosexual

>> activity, there was a lot of discrimination against gays in the

>> U.S., especially among evangelical Christians. Europeans have

>> been generally more tolerant of gays.

>

> I know the situation seems different; I think in EU there also was

> a lot of discrimination, but it was 'not done' do talk about that

> in public - especially in my country. I think in both regions the

> special position of gays played its part; if the first AIDS victims

> had been from another 'minority' group I doubt it would have

> attracted the same attention and money.

>

>

>> The question is how do we, the Lyme community, become more

>> visible? I think there's a lot of fear surrounding tick-borne

>> diseases, as well as a lot of ignorance about how devastating they

>> can be. And the brief news spots I've seen on TV don't really

>> address the key issues in depth.

>

> yes, that is a HUGE issue. I'm not sure if fear for creepy ticks is

> a major issue, I think it is mostly ignorance what it is about.

> Lymies are viewed pretty negatively by the general public. I have

> never heard such a thing regarding people who have chronic Q-fever

> or other chronic disease. Lymies are often portrayed by the media

> as 'people who are always tired'. In most EU countries many of them

> claim disability (in my country often for life - which is very

> strange IMHO; I think many of those claims are not legitimate). And

> the public sees the Lymies only when they feel well and not when

> they feel ill. Even my direct family has a hard time understanding

> that.

>

> We just had the first TV programme in Netherlands two weeks ago

> that had a fair presentation of some of the Lyme issues. They again

> had a patient who was 'very tired' and could not go to school for

> some months, but looked pretty normal on TV - not very convincing.

> But they also showed that in a private Lyme clinic in the south of

> Germany (far away by Dutch standards), about 10% of the patients

> were from the Netherlands. Everyone should wonder what is going on

> there.

> They also showed Dutch patients who went to the Czech republic and

> other Balkan countries for ABX treatments because those treatments

> are not possible in Netherlands (or very difficult to get). One

> patient explained that despite having to pay all the costs herself,

> and despite serious pain and other troubles during the treatment,

> she would do it again if the lyme resurfaces.

>

> We are trying to get more media coverage here this summer, when we

> present new material to our parliament. We are getting more

> coverage in the newspapers, and the old guard from the medical/

> microbiological community is now regularly writing to the

> newspapers about Lyme hysteria. They seem to be getting worried,

> which is a good sign. But the recent IDSA ruling that they won't

> change their Lyme guidelines is a serious bummer

>

>> The book Cure Unknown really covers every aspect of Lyme, but its

>> not exactly on the best-seller list.

>

> yes, one of the best Lyme books I have read.

>

>

>

>

>

[Guest guest]

Sorry ,  This ended up in my Junk box.  sends too much to junk!

 

By " it " I meant Facebook.

Sincerely,

Sonya

http://sonyafightslyme.blogspot.com

> We are trying to organize a huge rally Nationwide (perhaps

> worldwide?) on one specific day (hopefully in May for Lyme

> Awareness Month). We need supporters outside The Today Show with

> signs, Good Morning America, outside Oprah's studio, in every major

> city in the country (where they have news crews).

>

> We need bodies. Lots and lots of people. Is there anyone on this

> forum willing to participate & gather up enough people to do so as

> well?

>

> Sonyafly@...

> -Sonya

> Sent from my BlackBerry® smartphone with SprintSpeed

>

> [ ] Re: OT: ISDA

>

>

>

>

>>

>>

>> In the 80s when HIV/AIDS was identified solely with homosexual

>> activity, there was a lot of discrimination against gays in the

>> U.S., especially among evangelical Christians. Europeans have

>> been generally more tolerant of gays.

>

> I know the situation seems different; I think in EU there also was

> a lot of discrimination, but it was 'not done' do talk about that

> in public - especially in my country. I think in both regions the

> special position of gays played its part; if the first AIDS victims

> had been from another 'minority' group I doubt it would have

> attracted the same attention and money.

>

>

>> The question is how do we, the Lyme community, become more

>> visible? I think there's a lot of fear surrounding tick-borne

>> diseases, as well as a lot of ignorance about how devastating they

>> can be. And the brief news spots I've seen on TV don't really

>> address the key issues in depth.

>

> yes, that is a HUGE issue. I'm not sure if fear for creepy ticks is

> a major issue, I think it is mostly ignorance what it is about.

> Lymies are viewed pretty negatively by the general public. I have

> never heard such a thing regarding people who have chronic Q-fever

> or other chronic disease. Lymies are often portrayed by the media

> as 'people who are always tired'. In most EU countries many of them

> claim disability (in my country often for life - which is very

> strange IMHO; I think many of those claims are not legitimate). And

> the public sees the Lymies only when they feel well and not when

> they feel ill. Even my direct family has a hard time understanding

> that.

>

> We just had the first TV programme in Netherlands two weeks ago

> that had a fair presentation of some of the Lyme issues. They again

> had a patient who was 'very tired' and could not go to school for

> some months, but looked pretty normal on TV - not very convincing.

> But they also showed that in a private Lyme clinic in the south of

> Germany (far away by Dutch standards), about 10% of the patients

> were from the Netherlands. Everyone should wonder what is going on

> there.

> They also showed Dutch patients who went to the Czech republic and

> other Balkan countries for ABX treatments because those treatments

> are not possible in Netherlands (or very difficult to get). One

> patient explained that despite having to pay all the costs herself,

> and despite serious pain and other troubles during the treatment,

> she would do it again if the lyme resurfaces.

>

> We are trying to get more media coverage here this summer, when we

> present new material to our parliament. We are getting more

> coverage in the newspapers, and the old guard from the medical/

> microbiological community is now regularly writing to the

> newspapers about Lyme hysteria. They seem to be getting worried,

> which is a good sign. But the recent IDSA ruling that they won't

> change their Lyme guidelines is a serious bummer

>

>> The book Cure Unknown really covers every aspect of Lyme, but its

>> not exactly on the best-seller list.

>

> yes, one of the best Lyme books I have read.

>

>

>

>

>