Re: to a-- a thought on your relapses

[Guest guest]

Hi Jill,

I have been treated for babesia with Mepron and Zithromax. I shouldn't be

using my case as an example at this point. I have no idea if I even relapse

anymore. In fact I don't go off Zithromax anymore, because I just don't want

to find out.

I have severe tendon problems due to the quinolones I was given. It may well

be that all my current health issues are related to this. I don't really get

my original symptoms of cfs anymore and haven't for some time.

Eleven years ago the first year I was really sick with a throat that looked

like an AIDS patient I was given amoxicillin. It was quite effective to

clear up the throat but, of course, nothing else.

Again, my whole point in asking questions is not because I am looking for a

solution for me. I think we have to give clear and logical and USABLE

information to the 2,000 people on this list.

a

a, have you ever treated for babesia? Don't worry if you have a

positive test (I got a positive Fish test from Igenex, but negative

blood smears, negative antibodies etc) it's very hard to test

accurately for.

What about adding a course of malarone? I'm just thinking this because

zithromax is somewhat suppressive to babesia, as well as to lyme.

It might be afecting both for you.

You could add mepron to the zithromax, of course, but from what I've

seen, many people do relapse as they build resistant babesia.

Malarone has two drugs in it, one of them atovoquone (mepron) and

there is something else.

Have you ever considered this? If you don't treat a coinfection like

babesia you are likely to relapse off abx.

Also have you ever tried bicillin shots? They're probably the most

highly effective for chronic lyme. But biccilin won't touch babesia.

Just because you tolerate abx well and like them...but there is some

reason you relapse off them.

[Guest guest]

>

>

> a, have you ever treated for babesia? Don't worry if you have a

> positive test (I got a positive Fish test from Igenex, but negative

> blood smears, negative antibodies etc) it's very hard to test

> accurately for.

>

> HI All,

I am still confused if I have Babesia or not.Here are my Igenex

related tests.They were all taken on the same day 1 1/2 years ago.

Nick and Steve MD said it was Negative, but the Santa

Lab and my Lyme Doc said I was positive for Babesia.

PLease comment

B Microti IgM <120 titer

B Microti IgG <120 titer

Babesia WA-1 PCR Negative

Babesia FISH(RNA) Negative

***Babesia WA-1 Antibody REACTIVE AT 1:64 (considered reactive at

1:64 or greater)Santa Lab- County of Sonoma Dept of Health

services.***

Thank you,

Sue T

[Guest guest]

You mean all your postings are for other people? You are content to

stay on zithromax the rest of your life?

Okay.

I think this list is amazingly informative and the detailed

information is necessary. A complex multifactorial disease does not

have simple elegant answers esp. considering biochemical individuality.

I'm watching Jill ' DVD presentation now.

She was one of the pioneers in this arena.

>

> Hi Jill,

>

> I have been treated for babesia with Mepron and Zithromax. I

shouldn't be

> using my case as an example at this point. I have no idea if I even

relapse

> anymore. In fact I don't go off Zithromax anymore, because I just

don't want

> to find out.

>

>

>

> I have severe tendon problems due to the quinolones I was given. It

may well

> be that all my current health issues are related to this. I don't

really get

> my original symptoms of cfs anymore and haven't for some time.

>

>

>

> Eleven years ago the first year I was really sick with a throat that

looked

> like an AIDS patient I was given amoxicillin. It was quite effective to

> clear up the throat but, of course, nothing else.

>

>

>

> Again, my whole point in asking questions is not because I am

looking for a

> solution for me. I think we have to give clear and logical and USABLE

> information to the 2,000 people on this list.

>

>

>

> a

>

>

>

> a, have you ever treated for babesia? Don't worry if you have a

> positive test (I got a positive Fish test from Igenex, but negative

> blood smears, negative antibodies etc) it's very hard to test

> accurately for.

>

> What about adding a course of malarone? I'm just thinking this because

> zithromax is somewhat suppressive to babesia, as well as to lyme.

>

> It might be afecting both for you.

>

> You could add mepron to the zithromax, of course, but from what I've

> seen, many people do relapse as they build resistant babesia.

>

> Malarone has two drugs in it, one of them atovoquone (mepron) and

> there is something else.

>

> Have you ever considered this? If you don't treat a coinfection like

> babesia you are likely to relapse off abx.

>

> Also have you ever tried bicillin shots? They're probably the most

> highly effective for chronic lyme. But biccilin won't touch babesia.

>

> Just because you tolerate abx well and like them...but there is some

> reason you relapse off them.

>

>

>

>

[Guest guest]

>

>

> I am still confused if I have Babesia or not.Here are my Igenex

> related tests.They were all taken on the same day 1 1/2 years ago.

> Nick and Steve MD said it was Negative, but the Santa

> Lab and my Lyme Doc said I was positive for Babesia.

>

>

> ***Babesia WA-1 Antibody REACTIVE AT 1:64 (considered reactive at

> 1:64 or greater)Santa Lab- County of Sonoma Dept of Health

> services.***

>

> Thank you,

> Sue T

>

Sue, the Igenex tests are negative. The WA-1 test is done at Sonoma

County lab, and that is what is positive. You most likely have the

west coast version of Babesia, WA-1. Dr. Ray Stricker considers the

cut-off titers for WA-1 to be too high, so if you get a positive, then

you are pretty sure it is positive.

[Guest guest]

Jill wrote:

>

> You mean all your postings are for other people? You are content to

> stay on zithromax the rest of your life?

> Okay.

> I think this list is amazingly informative and the detailed

> information is necessary. A complex multifactorial disease does not

> have simple elegant answers esp. considering biochemical

individuality.

> I'm watching Jill ' DVD presentation now.

> She was one of the pioneers in this arena.

a replies:

Yes and no. I expect to have to remain on Zithromax or something,

maybe garlic, the rest of my life. I really don't think mycoplasma or

borrelia is curable at this time, nor do I anticipate the cure in my

lifetime.

I assume those who try Yasko's treatments will stay on them or some

of them the rest of their lives.

But you are missing my point, probably I am not making it well. It's

not really that I want a sixth grade simplistic summary because I am

too ignorant to understand more than that. Rather it is the way I

think. It's my process for learning and filtering out what is not

worth learning from what is.

If you play chess you know you must always be aiming to get the king.

You figure out a longterm strategy of moves to do that. What I want

on Yasko is the links - the reasons why I should take the time to

fill in the spaces with research - research that doesn't even exist

right now.

So we have to do a bit of research ourselves. We have to see what

genetic profiles we have. Then we have to see if Yasko's treatments,

in fact, seemed to help us in the past - in hindsight. We have to do

this for now because it's all we have to work with now.

Genetic research in medicine is fascinating. But it is pie in the sky

just now.

So it is not that I don't want to get completely well, it is because

I DO want to get completely well and NOW. I ask the questions. I want

answers - well, really I want smart speculation. I know there aren't

answers yet, and Rich does too.

Again let me pose my question - draw me a chart -

basic genetic types = specific symptoms = specific treatments

How would Yasko fill out this chart at this time? I don't think this

is too much to ask. Shoemaker does this. Now he will honestly tell

you, " You need MSH but you can't get it. " or " You need Questran but

the minute you are reexposed to mold you will get sick again. " That

is an honest answer. That is what I want to hear from Yasko or some

of you who have studied her.

Am I willing to study her? Not really.Not yet. You have not convinced

me yet. I've been studying this stuff and writing summaries, as have

you, for 8 years. Yes, I will stay on my Zithromax if that is the

best I can do, and that ain't too bad compared to most on this list.

a Carnes

[Guest guest]

In short summary, the connections are there, if you believe, as I do,

that folks with Parkinson's, MS, CFS, chronic lyme etc, have the same

kind of vulnerability the autistic kids do.

Yasko is not the only one in this camp, she just has the cutting-edge

SNP research.

Jill was a pioneer here.

And I have a ton of other DVD's to listen to.

I'm just not sure why you're asking others to do work to convince you

of something you don't particularly need, and you don't particularly

cotton to at this time.

We research what we need, or what interests us.

> >

> > You mean all your postings are for other people? You are content to

> > stay on zithromax the rest of your life?

> > Okay.

> > I think this list is amazingly informative and the detailed

> > information is necessary. A complex multifactorial disease does not

> > have simple elegant answers esp. considering biochemical

> individuality.

> > I'm watching Jill ' DVD presentation now.

> > She was one of the pioneers in this arena.

>

> a replies:

>

> Yes and no. I expect to have to remain on Zithromax or something,

> maybe garlic, the rest of my life. I really don't think mycoplasma or

> borrelia is curable at this time, nor do I anticipate the cure in my

> lifetime.

>

> I assume those who try Yasko's treatments will stay on them or some

> of them the rest of their lives.

>

> But you are missing my point, probably I am not making it well. It's

> not really that I want a sixth grade simplistic summary because I am

> too ignorant to understand more than that. Rather it is the way I

> think. It's my process for learning and filtering out what is not

> worth learning from what is.

>

> If you play chess you know you must always be aiming to get the king.

> You figure out a longterm strategy of moves to do that. What I want

> on Yasko is the links - the reasons why I should take the time to

> fill in the spaces with research - research that doesn't even exist

> right now.

>

> So we have to do a bit of research ourselves. We have to see what

> genetic profiles we have. Then we have to see if Yasko's treatments,

> in fact, seemed to help us in the past - in hindsight. We have to do

> this for now because it's all we have to work with now.

>

> Genetic research in medicine is fascinating. But it is pie in the sky

> just now.

>

> So it is not that I don't want to get completely well, it is because

> I DO want to get completely well and NOW. I ask the questions. I want

> answers - well, really I want smart speculation. I know there aren't

> answers yet, and Rich does too.

>

> Again let me pose my question - draw me a chart -

> basic genetic types = specific symptoms = specific treatments

>

> How would Yasko fill out this chart at this time? I don't think this

> is too much to ask. Shoemaker does this. Now he will honestly tell

> you, " You need MSH but you can't get it. " or " You need Questran but

> the minute you are reexposed to mold you will get sick again. " That

> is an honest answer. That is what I want to hear from Yasko or some

> of you who have studied her.

>

> Am I willing to study her? Not really.Not yet. You have not convinced

> me yet. I've been studying this stuff and writing summaries, as have

> you, for 8 years. Yes, I will stay on my Zithromax if that is the

> best I can do, and that ain't too bad compared to most on this list.

>

> a Carnes

>

[Guest guest]

>

> Hi ,

>

> How are you? Hope you are continuing to improve, too.

Yes, thankfully, I am continuing to improve. I've been on Bicillin

injections for a few months now, and that seems to be holding me quite

well. I am slowly regaining strength. For me, treating Bartonella

seems to have been a major hurdle. I know a hates it, but taking

Cipro for several months was very helpful for me, along with a pror

stint of Rifampin.

I'm looking into some of the Yasko work, as I know I have some genetic

issues. I'm not sure I will do her testing, as I am doing well on my

current protocols, which makes me think I might not have the worst

SNPs. However, I wouldn't mind building my body's ability to detox

better. Having Shoemaker's HLA types, and MCS, tells me I'm not as

good at that as my body needs to be. I do seem to be able to do well

on whey, methycobalamine, SAMe, liposomal glutathione, and other

supplements, as well as cholestyramine, so maybe I will only need the

more basic support to the detox pathways, rather than the more complex

treatments that some need.

So, I'm watching all you pioneers, trying to learn what might work for

me by trying out her info in as educated manor as I can, and reveling

in the improvement that I am seeing with what I am already doing.

>

> Yes . . . your explanation is how I understood it by Wayne. He

said there was no doubt because the titers were so high on the WA-1.

> It was strange that Igenex(Steve and Nick) said it was negative

even though Steve ordered the test and analyzed it. Nick even looked

at all my tests with me there face to face with him at the Lyme

conference a couple of years ago. He said I did not show I had Babesia

that the other tests canceled the antibody WA-1 test.

Hmmm, that is strange. don't know what is happening there.

>

> My only hope at this point is the Yasko route . . hoping my body

can start fighting these bugs more by itself w/o antimicrobial because

of my liver issues.

I've been delighted at how well you are doing. Especially as you are

in fact blazing the way for others who just can't get better.

Gordon is really paying attention to what is happening for you, and

looking at other patients with new eyes. If it makes even a small

difference for some of these people, it will be incredibly valuable.

Plus, I will be happy to finally have someone who gets well without

the conventional antimicrobials. I would love to have another route

that I can wholeheartedly recommend!

>

> I appreciate you opinion and value it highly. You are the expert

when it comes to Tick illnesses and fighting them with antimicrobial, etc.

>

>

Thanks, Sue! It's good that we are all able to share the knowledge

that we have, each in a different, but important area.

[Guest guest]

I don't know if the disease groups you mention have the same genetic

vulnerability. What I do believe is that all of the diseases you mention

come from a few infections that alter the immune system so that it cannot

destroy the infection or control it. It is the nature of pathogens to

survive. To do this they must conquer or be conquered.

My position is based on the Roadback foundation and ILADS doctors position.

It is not original to me.

And we have to ask again if Urnovitz' gene shuffling theories come into

play. What if what Yasko thinks is our genetic makeup is really our RNA

trying desperately to fix things? I am sure even she admits this whole mess

is vastly complex.

Forget about my motives. The 2,000 folks on this list would love to have

more to go on re Yasko. We will look forward to your studies.

Thanks,

a

Posted by: " jill1313 "

<mailto:jenbooks13@...?Subject=%20Re%3A%20to%20a--%20a%20thought

%20on%20your%20relapses> jenbooks13@...

<jill1313> jill1313

Sat Jul 29, 2006 10:18 pm (PST)

In short summary, the connections are there, if you believe, as I do,

that folks with Parkinson's, MS, CFS, chronic lyme etc, have the same

kind of vulnerability the autistic kids do.

Yasko is not the only one in this camp, she just has the cutting-edge

SNP research.

Jill was a pioneer here.

And I have a ton of other DVD's to listen to.

I'm just not sure why you're asking others to do work to convince you

of something you don't particularly need, and you don't particularly

cotton to at this time.

We research what we need, or what interests us.

[Guest guest]

You know I very much agree that infections are key, along with metal

poisoning.

Most of the time, however, the goal of infections is to coexist so

they can happily reproduce over great chunks of time.

They do not really, too often, use the ability to conquer as a

longterm strategy because they die out sooner. The more virulent a

pathogen, the less likely its long term survival. So cooperative

symbiosis is the usual goal.

But for some of us we're in the stage of the pathogen evolving to

that...our genetic polymorphisms may make us less likely to symbiosis

for some pathogens...

In any case, I'm finishing up the Jill DVD at the moment.

>

> I don't know if the disease groups you mention have the same genetic

> vulnerability. What I do believe is that all of the diseases you mention

> come from a few infections that alter the immune system so that it

cannot

> destroy the infection or control it. It is the nature of pathogens to

> survive. To do this they must conquer or be conquered.

>

>

>

> My position is based on the Roadback foundation and ILADS doctors

position.

> It is not original to me.

>

>

>

> And we have to ask again if Urnovitz' gene shuffling theories come into

> play. What if what Yasko thinks is our genetic makeup is really our RNA

> trying desperately to fix things? I am sure even she admits this

whole mess

> is vastly complex.

>

>

>

> Forget about my motives. The 2,000 folks on this list would love to have

> more to go on re Yasko. We will look forward to your studies.

>

>

>

> Thanks,

>

> a

>

>

>

> Posted by: " jill1313 "

> <mailto:jenbooks13@...?Subject=%20Re%3A%20to%20a--%20a%20thought

> %20on%20your%20relapses> jenbooks13@...

> <jill1313> jill1313

>

> Sat Jul 29, 2006 10:18 pm (PST)

>

> In short summary, the connections are there, if you believe, as I do,

> that folks with Parkinson's, MS, CFS, chronic lyme etc, have the same

> kind of vulnerability the autistic kids do.

>

> Yasko is not the only one in this camp, she just has the cutting-edge

> SNP research.

>

> Jill was a pioneer here.

> And I have a ton of other DVD's to listen to.

>

> I'm just not sure why you're asking others to do work to convince you

> of something you don't particularly need, and you don't particularly

> cotton to at this time.

>

> We research what we need, or what interests us.

>

>

>

>

>

>