Re: Lyme

[Guest guest]

Im forwarding this note I got back from someone who has been treated

for Lyme. Thought you ALL would be interested!

Kathy H

On 5-Jan-05, at 7:29 PM, Larry Dahl wrote:

> A lot of experienced Lyme MD think that MS is a symptom of Lyme, in

> Europe

> MS is considered Lyme, and antibiotics are administered.

> My Lyme symptoms started with night seats, and tingling in the fingers

> and

> face.

>

> My legs often felt hollow, sore joints, and sometimes my spleen ached.

>

> I also got red rashes on my stomach, and a funny mottled rash on my

> hands

>

> Can you see an MD Dr. E murakami in Hope BC, call him, make an

> appointment,

> an travel there.

>

> He is at the murakami medical clinic in Hope.

>

> Dr. M will have more info for you than I do.

>

>

>

> Lyme

>

>

>> Hi Larry,

>>

>> First off I have been diagnosed with MS 3 1/2 years now and many of

>> the

>> classic symptoms. Am close to using a wheelchair and for now walk

>> with

>> two canes or a walker. My question is, is it possible to have MS &

>> Lyme disease and how does one go about ruling out Lyme?

>>

>> Many of the symptoms are so similar but what caught my attention was

>> the night sweats. I used to change my pjs every night before the

>> major MS symptoms hit and have had aches and pains threw out my body

>> and joints and almost every other symptom I read on this site. While

>> an MRI did confirm lesions, I have heard that Lyme disease can look

>> similar on an MRI. Because I was in my late 30's when the night

>> sweats

>> started, of course peri-menopause was suspected and HRT given. Used

>> to

>> also get terrible rashes out of the blue for which I was given allergy

>> shots. Stopped the HRT and allergy shots when MS was found.

>>

>> While it would be easy to say " just MS " and accept this dreadful

>> disease alone, I cant help wondering if there is more going on here.

>> As a family we would camp in the Banff and Jasper area in late '80's

>> early 90's. How easy is this Western Blot blood test to get and is

>> there anywhere in Edmonton or Alberta this can be done to rule things

>> out?

>>

>> Thanks for any info you can offer.

>>

>> Sincerely

>>

>> Kathy Huget

>>

>> Edmonton, Alberta

>

[Guest guest]

I'm fairly new to the list. I'm considering having the test for lyme and co-infections. But it's expensive. My holistic MD will give me the kit for the test, and I send it to Igenex lab. But she's not sure I have lyme. I'm not sure she's current enough in her thinking...she might be. So, I'm asking for opinions of this group. Here's the basic history:

I'm from Ohio; have lived in Massachusetts for 20 years.

No tick bite that I know of.

I had mono at age 20; I'm now 47.

Since the mono, I've had big health problems, never felt the same since.

Severe fatigue, anxiety, depression, light sensitivity. Over the years, it got worse, I developed IBS, MCS, chronic sinusitis, stamina has gotten worse.

Per test with holistic M.D. I don't have chronic EBV or inflammation (something that shows up in a blood test that shows if you have lots of inflammation...)

Diagnosed with sleep apnea about 7 years ago; treated with cpap.

Am not able to work outside the home anymore.

Diagnosed with adrenal fatigue this past year; taking Cortef (cortisol).

Does this sound like lyme?--yes, no, maybe?

Thanks for any insight.

Ann

[Guest guest]

If you look at Sam Donta's study " Tetracycline therapy for chronic

lyme disease " - he enrolled patients in the study based only on

symptoms, and used antibacterials (but not combo antibacterials).

He also did the lyme blood tests, and as I recall, the tests did not

predict which of the patients responded to the antibacterial

treatment best. I forget whether very many of them were positive. And

it should be borne in mind that IGeneX testing may be superior to

whatever lab he used.

Still, personally, without really studying the issue seriously, I

havent gained the impression that lyme tests are all that useful for

predicting whether its worth trying antibacterials.

I am assuming your mono dx cant have been wrong, tho I dont really

know how such a dx is made. Under that assumption I would think it

possible that the mono opened the window for something else. But -

since you never recovered after mono, I hope the EBV test you got is

one you can rely on. I've personally never heard anything about them

not being reliable. I assume it was an antibody test? Anyway, no

point in not keeping chronic EBV in mind anyway.

I'd be interested in what the inflammation test was. My understanding

is that no such test is very definitive at all. Personally I wouldnt

conclude that you lack inflammation unless you see some data

suggesting that this test is sufficiently sensitive.

I would say your illness sounds alot like that of alot of people who

have done well on long-term antibacterials to some degree - some

others (perhaps slightly fewer?) having not done well. As far as I

know theres nothing much further you can do to try to substantially

evaluate whether antibacterials can help you. If you want to try

them, make sure you look into and understand the risks to your

satisfaction. Seeing an ILADS doctor may be the easiest way to get on

strong antibacterial therapy.

>

> I'm fairly new to the list. I'm considering having the test for

lyme and

> co-infections. But it's expensive. My holistic MD will give me the

kit for

> the test, and I send it to Igenex lab. But she's not sure I have

lyme. I'm

> not sure she's current enough in her thinking...she might be. So,

I'm asking

> for opinions of this group. Here's the basic history:

>

> a.. I'm from Ohio; have lived in Massachusetts for 20 years.

> b.. No tick bite that I know of.

> c.. I had mono at age 20; I'm now 47.

> d.. Since the mono, I've had big health problems, never felt the

same

> since.

> e.. Severe fatigue, anxiety, depression, light sensitivity. Over

the

> years, it got worse, I developed IBS, MCS, chronic sinusitis,

stamina has

> gotten worse.

> f.. Per test with holistic M.D. I don't have chronic EBV or

inflammation

> (something that shows up in a blood test that shows if you have

lots of

> inflammation...)

> g.. Diagnosed with sleep apnea about 7 years ago; treated with

cpap.

> h.. Am not able to work outside the home anymore.

> i.. Diagnosed with adrenal fatigue this past year; taking Cortef

> (cortisol).

> Does this sound like lyme?--yes, no, maybe?

>

> Thanks for any insight.

> Ann

>

[Guest guest]

Ann:

I agree with everythign said.

There's alot of symptom overlap between Lyme and all the syndromes

we talk about on these lists so it's extremely hard to separate out

what's due to what.

If we entertain the idea you have chronic Lyme (and you might),

if you've had it for years, you may not have any antibodies against

it. For this reason, alot of people follow Burrascano's

recommendation that you do an antibiotic " probe " before the test in

hopes that some Lyme bacteria is damaged, and it's DNA forced into

the blood. It's usally 3 weeks on a tetracycline, wait five weeks,

then do a PCR test and western blot.

The big shame is that tests for Lyme look for antibodies - and when

none are found, the Doc said " no Lyme " when in fact it might be a

false negative.

If it were me, I'd treat for Lyme for a while, then test for it

later. That's what I did - and I tested positive for Lyme by PCR on

my first test (but negative on both IgG and IgM western blots), and

it's suspected I'd had Lyme mis dx'd as other things for 25 + years.

Good luck.

Barb

> >

> > I'm fairly new to the list. I'm considering having the test for

> lyme and

> > co-infections. But it's expensive. My holistic MD will give me

the

> kit for

> > the test, and I send it to Igenex lab. But she's not sure I have

> lyme. I'm

> > not sure she's current enough in her thinking...she might be. So,

> I'm asking

> > for opinions of this group. Here's the basic history:

> >

> > a.. I'm from Ohio; have lived in Massachusetts for 20 years.

> > b.. No tick bite that I know of.

> > c.. I had mono at age 20; I'm now 47.

> > d.. Since the mono, I've had big health problems, never felt

the

> same

> > since.

> > e.. Severe fatigue, anxiety, depression, light sensitivity.

Over

> the

> > years, it got worse, I developed IBS, MCS, chronic sinusitis,

> stamina has

> > gotten worse.

> > f.. Per test with holistic M.D. I don't have chronic EBV or

> inflammation

> > (something that shows up in a blood test that shows if you have

> lots of

> > inflammation...)

> > g.. Diagnosed with sleep apnea about 7 years ago; treated with

> cpap.

> > h.. Am not able to work outside the home anymore.

> > i.. Diagnosed with adrenal fatigue this past year; taking Cortef

> > (cortisol).

> > Does this sound like lyme?--yes, no, maybe?

> >

> > Thanks for any insight.

> > Ann

> >

>

[Guest guest]

Plus once you have chronic lyme it downregulates your immune system

adn other infections piggyback.

> > >

> > > I'm fairly new to the list. I'm considering having the test for

> > lyme and

> > > co-infections. But it's expensive. My holistic MD will give me

> the

> > kit for

> > > the test, and I send it to Igenex lab. But she's not sure I

have

> > lyme. I'm

> > > not sure she's current enough in her thinking...she might be.

So,

> > I'm asking

> > > for opinions of this group. Here's the basic history:

> > >

> > > a.. I'm from Ohio; have lived in Massachusetts for 20 years.

> > > b.. No tick bite that I know of.

> > > c.. I had mono at age 20; I'm now 47.

> > > d.. Since the mono, I've had big health problems, never felt

> the

> > same

> > > since.

> > > e.. Severe fatigue, anxiety, depression, light sensitivity.

> Over

> > the

> > > years, it got worse, I developed IBS, MCS, chronic sinusitis,

> > stamina has

> > > gotten worse.

> > > f.. Per test with holistic M.D. I don't have chronic EBV or

> > inflammation

> > > (something that shows up in a blood test that shows if you have

> > lots of

> > > inflammation...)

> > > g.. Diagnosed with sleep apnea about 7 years ago; treated

with

> > cpap.

> > > h.. Am not able to work outside the home anymore.

> > > i.. Diagnosed with adrenal fatigue this past year; taking

Cortef

> > > (cortisol).

> > > Does this sound like lyme?--yes, no, maybe?

> > >

> > > Thanks for any insight.

> > > Ann

> > >

> >

>

[Guest guest]

On Friday, November 4, 2005, at 12:47 AM, wrote:

> I am assuming your mono dx cant have been wrong, tho I dont really

> know how such a dx is made. Under that assumption I would think it

> possible that the mono opened the window for something else.

I'm not sure about this. When I was 17 or 18, I had " mono " also. Only I

had some test that did NOT confirm mono. It was just assumed. For all

I know, that was the beginning of my Lyme disease, which did not

manifest itself strongly enough to identify until I was 39, and still

went unidentified because of ignorance all around, until I was 46. But

I have no records of what testing was done, so only a clue that it

might not really have been mono I had. My Mom just remembers that the

doc told her they weren't really sure.

I presumably contracted Lyme in MA at some point from an unknown tick

bite, although I was at school in New Hampshire when this bout of

" mono " occurred.

- Kate

[Guest guest]

Kate, very interesting!

A recent test showed that I had mono in the past. So, I know I did. I realize I could also have Lyme though.

I'm sorry you went so long without a dx. That's the sad story of so many of us.

How are you now?

Ann

-----Original Message-----From: infections [mailto:infections ]On Behalf Of KateSent: Friday, November 04, 2005 11:54 AMinfections Subject: Re: [infections] Re: lymeOn Friday, November 4, 2005, at 12:47 AM, wrote:

I am assuming your mono dx cant have been wrong, tho I dont reallyknow how such a dx is made. Under that assumption I would think itpossible that the mono opened the window for something else.I'm not sure about this. When I was 17 or 18, I had "mono" also. Only I had some test that did NOT confirm mono. It was just assumed. For all I know, that was the beginning of my Lyme disease, which did not manifest itself strongly enough to identify until I was 39, and still went unidentified because of ignorance all around, until I was 46. But I have no records of what testing was done, so only a clue that it might not really have been mono I had. My Mom just remembers that the doc told her they weren't really sure.I presumably contracted Lyme in MA at some point from an unknown tick bite, although I was at school in New Hampshire when this bout of "mono" occurred.- Kate

[Guest guest]

On Friday, November 4, 2005, at 12:58 PM, Ann Greenberger wrote:

> A recent test showed that I had mono in the past. So, I know I did. I

> realize I could also have Lyme though.

Sheesh, I can't even get any doctors here interested in looking at

doing tests like that. I guess they think the expense isn't justified

because it won't make any difference.

>  I'm sorry you went so long without a dx. That's the sad story of so

> many of us.

> How are you now?

I had become fairly disabled in recent years and the pain was getting

unbearable. That's when I figured out for myself what the problem was

and got myself an IGeneX test. It was either that or go jump in the

ocean and not come out. I am not yet really well, but I am back out in

the real world teaching part-time at a university. I think abx

treatment is making a big difference, although progress has been slow.

Part of my problem is that I have found no helpful doctors within a

thousand miles of Halifax, Nova Scotia, so I have been having a hard

time obtaining adequate treatment and figuring out the right thing to

do. We do pay for my son to see a doc in CT but so far I have

stubbornly refused to go into more debt to get my own out-of-country

Lyme specialist. I have been pursuing every other local or Canadian

option I can think of, but I may just have to give in and pay the bucks

because I don't want to relapse for a stupid reason like not being able

to obtain what abx I need. Drugs are cheaper in Canada, so it's a big

help to have a Canadian doctor prescribe them, but there are only a

couple who treat Lyme at all in Canada. The main one who does has been

investigated by his board recently. I think it's going to turn out

okay, but he hasn't been able to help Lyme patients much while this is

going on. It looks like some people in the government may actually be

listening now, although at the provincial level nothing is happening

yet.

I would definitely go for some Lyme testing etc. if I were you. Or

maybe look into Cpn or other possible culprits. I am so angry that docs

don't even consider looking for infections. It took me so long to get

clued in. I even had one doc who was well aware that CFS/FMS patients

often have micoplasma etc., but he doesn't bother to test his patients

since he doesn't think it means anything or that you can do anything

about it. I just wish he had even SAID something about infectious

possibilities. He's the one who eventually signed for my IGeneX Lyme

test but only because I came up with the idea and pressured him into

it. When it came back positive, he didn't want to deal with it. I

wasted a year of talking to him once a month before I figured out what

testing I needed. Duh, that doesn't help the medical system with costs

either, does it!?

- Kate

[Guest guest]

> He also did the lyme blood tests, and as I recall, the tests did not

> predict which of the patients responded to the antibacterial

> treatment best. I forget whether very many of them were positive.

And

> it should be borne in mind that IGeneX testing may be superior to

> whatever lab he used.

Actually come to think of it I think Fawcett has some data to the

contrary, in children. I dont really know who he is tho. I know he has

published with LH Sigal, who is a liability to medicine IMO. Donta I

know.

[Guest guest]

I don't know whether it's lyme, but it sure sounds exactly like a

chronic infection, inflammation scenario.

My daughter was incredibly fit and healthy until she got mono in

junior high school.

It was all downhil from there. Daily migraines, fatigue, light

sensitivity, general malaise. She eventually improved enough to test

out of high school and go to community college part time, but a big

turn around came with Minocycline.

A couple months on that and she was a new person. Lost her pallor,

had energy again. She got her AA in dance, while taking over running

a local dance studio. She's leaving next month for Europe and will

come back to finish a degree in International Studies and pursue

more dance opportunities. She stopped the mino for some months and

has recently begun taking it again as she started noticing some

slight symptoms returning.

I think a therapeutic probe with an antibiotic would be a good way

to go regardless of the testing (which is controversial anyway). If

you feel better (as I did) then you know you're onto something, and

then might consider further testing. Just remember that depending on

your specific bugs, your response to an abx may be different from

mine. I don't take one unless it makes me feel better. I'm not big

on the never-ending herx scenario. And that can mean some

experimentation. Many people do great on minocycline, for example,

but some of us (myself included) react very adversely to it.

You should also look into pub med research on cimetidine (tagament).

Dr. Goldstein, a well known CFS researcher, now retired, is beside

himself because he said repeatedly that he could cure mono patients

in 3 days with cimetidine (wish I'd known!). The medical research

supports his assertion. And Stratton/Wheldon employ something like

Cimetidine in their anti-bacterial protocol, so you may want to

consider adding this to your regimen. I'm not sure how it will apply

to a dormant mono virus, but it's a very benign otc drug and

couldn't hurt and Stratton seems to think it helps.

I'd get your doc to look at some of the protocols for chronic

infection, whether lyme, chlamydia (Stratton/Wheldon) and ask for a

therapuetic probe with the most broad spectrum abx you can get.

Penicillin is making a big comeback. I've been on numerous abx, and

my bugs tested resistant to many before I even started antibiotic

therapy, but Penicillin VK's been working great for me, for the

longest period of time, since I became really ill.

penny

> >

> > I'm fairly new to the list. I'm considering having the test for

> lyme and

> > co-infections. But it's expensive. My holistic MD will give me

the

> kit for

> > the test, and I send it to Igenex lab. But she's not sure I have

> lyme. I'm

> > not sure she's current enough in her thinking...she might be.

So,

> I'm asking

> > for opinions of this group. Here's the basic history:

> >

> > a.. I'm from Ohio; have lived in Massachusetts for 20 years.

> > b.. No tick bite that I know of.

> > c.. I had mono at age 20; I'm now 47.

> > d.. Since the mono, I've had big health problems, never felt

the

> same

> > since.

> > e.. Severe fatigue, anxiety, depression, light sensitivity.

Over

> the

> > years, it got worse, I developed IBS, MCS, chronic sinusitis,

> stamina has

> > gotten worse.

> > f.. Per test with holistic M.D. I don't have chronic EBV or

> inflammation

> > (something that shows up in a blood test that shows if you have

> lots of

> > inflammation...)

> > g.. Diagnosed with sleep apnea about 7 years ago; treated with

> cpap.

> > h.. Am not able to work outside the home anymore.

> > i.. Diagnosed with adrenal fatigue this past year; taking

Cortef

> > (cortisol).

> > Does this sound like lyme?--yes, no, maybe?

> >

> > Thanks for any insight.

> > Ann

> >

>

[Guest guest]

Another network marketing product. Excellent and way overpriced. Lifeforce (I

believe was the original company) started selling KLBGA back in the 70's.

Phenomenal superfood. They ran into purity issues due to the collection in both

the canals in the basin as well as microbial contamination from agricultural run

off. They reformed as Cell Tech after they got the microbial issues handled in

order to separate from the past. Cell Tech did fine for years until the low

water periods in the late nineties I think (Remember the salmon die off and

battle between the ranchers and the fisheries industry dealing with the Klamath

river in Ca.?). At the same time they ran into high concentrations of

contamination from chemicals from agricultural run off. They then reformed as

Stem Tech to again put the past behind. They have solved the purity issues by

making an extract of KLBGA, and being able to filter out the unwanted

contaminants. The cell enhancing effects of KLBGA have been known to some

extent for quite some time.

Guess what though? All algaes possess this and other very desirable

qualities. Spirulina, dunnelia, chlorella, etc. In fact, chlorella contains a

substance known as Chlorella Growth Factor (CGF) (real expensive too in extract

form. Sun Chlorella has one in liquid form flavored with plum and honey that

tastes to die for. Buy some and then invite me over, I could never afford it on

my own.). Since algaes are extremely fast reproducing cell structures they make

biochemicals that stimulate cell growth. Any, even in whole form will provide

this function. Idea of difference in cost; Chlorella should run you about $40

per pound (only buy cracked cell wall), check out the Stem Tech product.. Bon

apatite, you cannot find healthier super foods than the algaes. -D

----- Original Message -----

From: mkathryn59<mailto:mkathryn59@...>

gallstones <mailto:gallstones >

Sent: Friday, August 17, 2007 8:50 AM

Subject: Lyme

Hi Margherita,

I understand that Lyme is a very hard/impossible disease to get rid of.

I have a product called STEM ENHANCE that I believe will help you. I am

giving you a book link to read about it and see what you think.

http://www.morestemcells.biz/imagesRTE/D131346/PrimordialFoodV0105V1-new\

pdf<http://www.morestemcells.biz/imagesRTE/D131346/PrimordialFoodV0105V1-new/.pd\

f>

<http://www.morestemcells.biz/imagesRTE/D131346/PrimordialFoodV0105V1-ne\

w.pdf<http://www.morestemcells.biz/imagesRTE/D131346/PrimordialFoodV0105V1-new.p\

df>>

Here is a couple of paragraphs from the book.

Here is what the book says about it.

1. Stimulates the migration of natural killer cells, a type of

lymphocyte involved in eliminating cancerous and virally infected cells.

2. Contains a substance known as " the molecule of joy, " which enhances

mental focus and mental energy, elevates mood, and alleviates

depression.

3. Is an exceptional source of Omega-3 fatty acids, carotenoids and

chlorophyll II

4. Enhances the release of stem cells from the bone marrow and therefore

stands as an unequaled natural product for regeneration.

5. Contains a unique and potent anti-inflammatory compound

Historically, medicine has been the story of opposition between

conflicting views regarding health and disease. The sad truth is that

the path medicine has taken has been determined primarily by events and

circumstances rather than the rigorous evolution of knowledge. It has

been deeply influenced by both politics and humanness.

One such event that drastically shaped today's medicine was the

acceptance of Pasteur's work over Bernard's -- one of the pioneers in

the theory that the whole body, or terrain, is the determinant factor in

health.

Bernard held that if the terrain is well maintained by proper nutrition

and strong immunity, disease will not develop. On the other hand,

Pasteur who provided evidence of a ubiquitous bacterial world, suggested

that the root cause of all disease is the introduction of bacteria into

the body, regardless of the terrain. " End of quote.

Also here is my web site for you to look at and listen to the short

video.

www.kbrunken.stemtechbiz.com

<http://www.kbrunken.stemtechbiz.com/<http://www.kbrunken.stemtechbiz.com/>>

Let me know what you think of this and if you are interested in signing

up for it I will be glad to help you.

Regards,

[Guest guest]

, thanks for the link. I took a quick look at it and will read it in

more detail later. Yes, Lyme is very difficult to treat if you didn't get

antibiotics right away, which I didn't. There's a lot of controversy about this

illness.

Re your product, I notice that algae is one of the components. Green products

generally trigger a flare-up of IC for me. However, I will take a closer look

at the info you sent. Thanks for thinking of me.

All the best,

Margh

[Guest guest]

Dear All

Looks like Cheney and may have to move over as scapegoats (or sacrificial lambs).

The whitewash in Feder's paper starts in the first paragraph

" Lyme disease, the most common tick-borne infection in the northern hemisphere, is a serious public health problem. In North America, it is caused exclusively by Borrelia burgdorferi sensu stricto (hereafter referred to as B. burgdorferi), whereas in Europe it is caused by B. afzelii, B. garinii, B. burgdorferi, and occasionally by other species of borrelia.1"

http://content.nejm.org/cgi/content/full/357/14/1422.

This ignores a great deal of contrary evidence encapsulated by

"The B. burgdorferi sensu lato complex is composed of the following species: B. turdae, B. tanukii, B. bissettii, B. valaisiana, B. lusitaniae, B. bissettii, B. andersonii, B. japonica, B. garinii, and B. afzelii. Of these, B. burgdorferi, B. garinii, and B. afzelii are the dominant species associated with infection in humans." from http://www.thefreelibrary.com/_/print/PrintArticle.aspx?id=63807723 (March 2000)

It is clear that there is sufficient dispute over several , as yet un-named Borrelia species known to cause infection to make Feder's claim appear to be s wildly sweeping statement.

As my sainted mother would say "None so blind as those that will not see"

R

[infections] Lyme

I know you guys don't really follow the polrtical scene in Lyme- but here's a Dr.s rebuttal to a recent article about Lyme... and this Doc is REALLY putting his lisence on the line going against the big guys- There's been investigations of several Drs. who prescribe long term abx for Lyme.Barbhttp://www.jemsekspecialty.com/files/NEJM-Response.pdfResponding to a New England Journal of MedicineCritical Appraisal of "Chronic Lyme Disease"Read The Full NEJM Article OnlineThis is an opinion piece by Dr. ph Jemsek, in consulting collaboration with other experiencedcolleagues. It is not intended to reflect an exhaustive critique of the many shortcomings of the "Feder"paper, but rather an attempt to highlight the most glaring incongruities and perplexing logic flows contained within what is considered a shameful and politically-motivated article. The purpose of this critique is to place disparaging opinion about persistent disease associated with Lyme Borreliosis on full exhibit.The subject of "Chronic Lyme Disease" was once again presented in a prominent journal setting in a recently published "review" in the October 4 NEJM article by Feder et al. As seen in several previously published reviews, opinions, and guidelines, the tenor of the publication is dismissive to physicians who feel that Borrelia burgdorferi, the causative agent of Lyme disease, may be responsible for persistent illness which requires long-term antibiotics and a myriad of other treatment considerations and measures. It seems to patronize the opinions of these physicians, opinions which are backed by hundredsof scientific publications and galvanized by countless clinical encounters with desperate andmarginalized patients.Published "reviews" on Lyme disease, similar to the Feder article, seldom offer any new or credible insight into clinical or scientific issues, and therefore their purpose and timing must be questioned. This article clearly echoes the stilted logic and highly suspect content promoted by the portion of the 2006 IDSA Guidelines which dealt with this subject matter and whose authors may come under anti-trustinvestigation. The repetitive arguments promoted by a select group of researchers and/or self-proclaimed "ad hoc" committee members –"the Lyme Cabal", as we will refer to them, includes the high-ranking members of the CDC's Vector Borne Branch, and Mead, and do nothing to further our understanding of what is making our population chronically ill.In the absence of new ideas and with a history of rejecting meaningful dialogue with those who maydisagree with them, Feder and associates appear to simply reshuffle authors and rearrange their template of imperial arguments for this most recent article. Again they employ the same indecipherable, distorted, and circular logic which they have displayed in the past, and appear to play favorites with their facts.Many of the authors cited are known to have ties to patented business ventures dealing with, amongother things, future testing and vaccine development in Borreliosis-related ventures. We have serious concerns about propriety and integrity issues for both the Lyme Cabal constituents and for the NEJM, which has a heretofore irreproachable standard of excellence in publishing medical science. We also express serious concerns about the health of our population in terms of the continuing scientific "ambiguity" surrounding this disease complex, which we term Lyme Borreliosis Complex (LBC).The review begins by indicating an important fact – that Lyme disease is a serious public health problem which is "complex", but the tone of the article immediately thereafter becomes and remains, dismissive. LBC is trivialized through consistent application of journalistic phrasing techniques designed to give the reader a sense that the authors are annoyed that there is a fuss about this issue, and that their views have not been accepted without reservation.Examples of these methods of literary intimidation and the abusive misuse of factual material are scattered throughout the text and are briefly portrayed as follows:a) This "serious public health threat" which is "complex" will "usually respond well toconventional antibiotic therapy." The committee fails to provide evidence of what response ismeasured and by what methods. They further state that a "minority of patients" have symptoms which remain after"resolution…after antibiotic treatment." Again, this assumes that all patients are diagnosedand treated, which is simply not fact, and again this statement defaults to the committee'sinflexible criteria for diagnosis and treatment.c) The committee further considers symptomatic illness as "usually mild and self-limiting", anddefines these patients as having "post-Lyme disease syndrome", an arbitrary term adopted bythe Feder camp years ago and thoroughly associated with ill-defined, non-organic illnessthrough repetitive indoctrination with this brand of pseudo-scientific jargon on theunsuspecting medical community. "Mild and self-limited" is counter to the characterizationof numerous other reports, and contradicts the authors' opening remarks of a "serious andcomplex" illness. The terms "mild and self-limited" are subjective, and craftily inserted toprejudice the biased opinions which follow.d) After the initial paragraph, the word "complex" is no longer mentioned, as if the authors feel readers will forget the reference as it is plowed under by subsequent disparaging remarks.e) The committee stated that their review is "not the objective manifestations of late Lymedisease but rather the imprecisely defined condition referred to as `chronic Lyme disease.'"i. `Objectivity is in the eye of the beholder. The more skilled and experienced the observer becomes, the better the tools available with which to measure; the better theunderstanding of the elements which comprise the universe of the subject matter athand, the more "objective" the manifestations of the illness complex will become.ii. The committee is derelict in not being more forthright about issues of objectivity; ifobjective measures are wanting, why not make efforts to improve them? The practice ofmedicine is suffering mightily as our practitioners increasingly rely upon guidelines and "cookbook" medicine, and not on what the patient communicates. We physicians arebecoming more robotic, and why is that so? The physician must constantly listen to,and learn from the patient, especially when "testing" fails both provider and patient.iii. The committee stumbles over the precise definition of an illness they initially state is"complex" and proceeds to wantonly blur the debate further by talking about, "not theobjective manifestations of Lyme disease", but rather "chronic Lyme disease". This isclassic double–speak on their part.f) The committee targets a "small number of practitioners", not a subtle reference, theterminology of which is assuredly designed to reduce the number and significance of thosewith opposing viewpoints. The committee appears to mock physicians who "suggest" thatpersistent B. burgdorferi may require long-term antibiotic treatment, or that it may be"incurable". They do so in such manner that suggests a whimsical allusion to futility, andimplies in parallel analogy that patients who embrace this view are equally futile in theirthinking.g) Declarative and unsubstantiated statements dominate the "review" as in "the opinion of thecommittee is that Lyme disease includes a broad array of illnesses or symptom complexes forwhich there is no reproducible or convincing scientific evidence of any relationship to B.burgdorferi infection". First, note that this is an opinion but, in the setting of the Lyme Cabalpublishing in the NEJM, this opinion equates to dictum and also, in our collective opinion,equates to an abuse of power by those who hold power in this setting. The lack of "evidence"reference, which glides so easily on the NEJM page, is easily countered by well-documentedliterature references indicating that the world at large is held hostage to unreliable and stifledtesting which severely limits the ability of the practitioner to provide laboratory data insupport of this aforementioned "complex illness".h) In the very near future, we predict that many of the Lyme Cabal will find it hard to explainthe more than 200 patents they hold for better testing, vaccine development, and otherbusiness interests in the expanding universe of Borreliosis-related disease. Further, it mayprove exceedingly difficult for the Cabal to explain why their involvement with these patentshave been largely undisclosed, when the science at hand could have benefited the untoldthousands whose lives have been unalterably changed by this chronic illness.i) Late in the publication, the committee uses the political and inflammatory term "ChronicLyme Disease" as the heading of a new section, instead of their preferred term, "late Lymedisease". We ask the obvious question of why the choice to begin a section with somethingthe committee says does not exist.j) The committee further makes vague and imperial comments about those diagnosed and treated for Lyme disease, as somehow being "substantively" different than those with other "recognized" infectious diseases. We are disturbed that a NEJM editorially-approved article would accede to a reference which equates to "intellectual cement" in academic medicine.At what point did the US academic universe decide that they had a handle on the mysteries ofmedicine? Over 90% of the most prominent chronic illnesses, e.g. MS, RA, Crohn's, etc.,have no know cause. This is hardly a position from which to exude scientific arrogance.Diagnoses are, and always will be, integrally associated with varying clinical criteria, testinterpretations, and physician judgment. Testing was designed to serve the will of theclinician and now it seems that the tail wags the dog. Generational change in medicinehistorically shows that 50% of what we hold as fact today will change, but which 50%?k) A disclaimer by an organization is an attempt by the rule makers to absolve all recriminationsin perpetuity. To wit, as our authors and their alter egos at the IDSA suggest, (and as someof the committee's authors who took part in the 2006 Lyme Guidelines stated): "It isimportant to realize that guidelines cannot always account for individual variations amongpatients. They are not intended to supplant physician judgment with respect to particularpatients or special clinical situations". Why then would these committee members attempt tominimize the role of physician judgment in the diagnosis of any illness, especially a diseasewith the devastating impact of persistent Lyme disease? Clearly the committee is deemphasizingclinical judgment and experience because they don't fully appreciate the rootsof their discipline – the patient. This is a highly disturbing and dangerous thought for theprofession of medicine and for the population which it serves.l) The committee criticizes the "lines of reasoning" to support a diagnosis of Lyme disease in those who do not show antibodies against B. burgdorferi in serum, particularly given the "thewell-known immunogenicity of lipoproteins". They claim these "theories" of antibody negativity with LBC are not well-supported by scientific data. They fail to acknowledge thatthe testing reagents used in traditional labs are limited to only one strain (B31) in a disease inwhich multiple Borrelia burgdorferi strains may play a role. They ignore the welldocumentedaltered life forms of Borrelia species, (e.g. CWD forms, cysts, and blebs), none of which manifest lipoproteins. They fail to acknowledge the intracellular habitat of both helical and cyst forms, and the disturbing ability of the B31 spirochete to penetrate a series ofneuronal and glial cell lines, as described in the 2006 Livengood CDC paper published in thesummer of 2006. They fail to hypothesize or consider the notion that patients with LBC mayhave highly dysfunctional innate and adoptive immunologic effects.As if not satisfied with yet another highly creative and biased interpretation of the data, the authors then turn to criticize "specialty labs" as not "FDA approved". The FDA, which bythe way acknowledges that current testing is unreliable, has nothing to do with credentialinglabs unless a product is marketed, a convenient oversight by the authors. This "shoot themessenger" approach ignores the highly suspect and arbitrary manipulation of data andpolicy which took place at the 1994 Dearborn meeting and left the world without Osp A andB bands as qualifying criteria for diagnosis. This is a particularly mystifying situation sincethe ill-fated and ill-conceived LYMErix vaccine promoted by several of the Lyme Cabal wasbased on the Osp A, or kda band 31, lipoprotein antigen.Most significantly, the authors fail to mention that much of the research done by several ofthe authors of their own committee, (when closely examined), supports the opposite view ofwhat they express. Perhaps they should go back and re-study their own, earlier research. Asstated previously, many in the Lyme Cabal are involved in various side-interests whichinclude, but are not limited to, the patenting of diagnostic tests and/or components thereof,which we have referred herein. Therefore, we and others are concerned that these individualsmight have a vested interest in dismissing any diagnostic or treatment modalities contrary totheir "recommendations". m) The committee uses "shock value" terminology to describe a minority group who treat Lymedisease – a handful of practitioners utilizing "unconventional" or "dangerous" methods to treat Lyme, as if they are the collective majority. The mainstream of providers does not fittheir characterization, so these inferences are wholly unsubstantiated, unwarranted andmalicious. To this end, the committee has a history of promoting the term "medicalquackery" at every opportunity because its use resonates loudly as an alarm to the public.The authors know that libelous remarks directed against specific physicians or groups arevery difficult to prosecute and that their public indignation makes for good journalistic copywithout fear of reprisal. n) Further, the committee states that "no other spirochetal illness including…tertiary syphilis ismanaged in an analogous fashion." Syphilis, caused by treponema pallidum, has a formidable and sinister history for causing human illness in past centuries, and in recent times has experienced a renaissance associated with the HIV/AIDS pandemic. Unlike Borrelia burgdorferi, treponema pallidum has only one host, the human, whereas Borrelia burgdorferi has many hosts. For the record, we use a "tongue in cheek" byword whenreferring to treponema pallidum, which we refer to as "Lyme's DUMB Cousin." We use thisdroll term based on comparative genomic profiling among spirochetal and other bacterialspecies, which makes Borrelia burgdorferi the clear winner in the microbial geneticlottery.o) The authors compare the duration of treatment for Lyme disease to that of tuberculosis,another predominantly intracellular infection. We are amused at the implications by theauthors that tuberculosis is treated successfully for a relatively limited period of 6 months,compared to LBC which "may go on for years". However, in the not so distant past,tuberculosis used to require 18 months or more of antibiotics. When better drugs becameavailable and pulsed antimicrobial programs were employed, therapy was made moreefficient and shorter in duration. Of interest, pulsed therapy is precisely the treatmentmethodology employed by the Jemsek Specialty Clinic and other Lyme-literate physicians intreating "chronic Lyme disease". Furthermore, as experience is gained, treatment programsusing combination antimicrobials, as is the case for tuberculosis and HIV/AIDS among manyother complex infections, is also allowing for more efficient therapy of shorter duration inLBC.p) In terms of persistence, dozens of articles support this notion, including some of the authors'earlier works. From a purely observational basis, if Borrelia burgdorferi is so easily dealt with in the infectious state, why does it proliferatively persist in hard-shelled ticks, various small and large mammals, and humans (not the end host). Why is it revered by microbiologists as the most uniquely and lavishly genetically-endowed bacterium on the planet, and why is it being so heavily patented by Universities, researchers and others, including the majority of the members of the committee who performed the NEJM review?q) Approaching the stratosphere of arrogance, the committee goes on to summarize Lymedisease into 4 convenient categories, like shoeboxes lined up in a row for shoeless andilliterate providers, without vote or consensus via any authorized committee or organizationwhich would consummately arrive at these "categories"; and yet these were blithelypublished by the NEJM. So, because they must be addressed, we will do so.i. They do not accurately encompass the majority of Lyme disease patients.ii. They choose to ignore patients who present to their physicians with clear erythemamigrans rashes and other clinical symptoms of Lyme disease, but who are told they "donot have Lyme", because the physicians do not recognize its clinical manifestations, orare relying on surveillance criteria definitions, and inaccurate laboratory testing.iii. These individuals are then not treated, and go on to develop Lyme disease in a chronicform.iv. They also do not address patients who are misdiagnosed with other illnesses such asMS, ALS, RA and CFS.v. The committee assumes at all points that patients are treated appropriately for theirillness, and yet in fact, most patients receive little or no treatment, which is why theyremain chronic.vi. In patients with positive serology and no objective symptoms, the Bb-associated illnessmay be subclinical, as research proves that Bb remains dormant within the body forextended periods of time, from months to years after infection. Some of the committeemembers' own research clearly states this.vii. Category 4 disease, as newly crafted and defined by the Lyme Cabal, has had anembarrassingly small number of treatment trials upon which to draw these conclusions.Further, in eschewing the study and expansion of the scientific and clinical horizons forthe innumerable issues which remain to be addressed in this illness complex, theauthors make it clear that they are content to remain entrenched in their existing dogmaperhaps until it is "time to announce the Lyme epidemic" and bring out the new testsand vaccines. The most prominent of the studies mentioned above was performed by Dr. Mark Klempner, a committee member who also happens to be on the editorialboard of the New England Journal of Medicine. If the NEJM is an objective medical journal, we ask why this fact was not made prominently apparent for its readership.r) The committee is disdainful about antibiotic therapy causing "considerable harm" to patients,but fails to mention that all medical treatments have inherent risks. This allowance by theeditor of the NEJM is in and of itself, unpardonable. Further, the authors fail to present a balanced representation of the patient populations in question. They fail for example, tomention that untreated and dismissed chronic Lyme patients commit suicide at alarming ratesdue to the hopelessness and agony associated with this illness.s) The committee members claim those running clinical studies have had "difficulty" securingpatients who meet the criteria of their obviously biased studies – such as the elimination of500 people who were excluded because they lacked a "substantiated history of Lymedisease." Substantiated by what account? Most Lyme patients have no substantiated historyof Lyme disease because doctors are missing the diagnosis and failing to treat thesepatients…more circular logic. Again, the committee is myopic in arriving at its conclusionsabout the scarcity of patients, either those "well-documented" or who develop "clinicallysignificant problems" after "conventional treatment." We would like to provide the benefitof the doubt to the Lyme Cabal and pray that their glossing over and misinterpreting/ignoringor trivializing consistent and debilitating patient issues are not intentional.t) There are untold thousands of individuals in our country and around the world who liveunfulfilled and tortuous lives due to the political situation surrounding LBC and consequentaccess to quality care issues. A symptom of the rudimentary state in which we find ourselvesis made evident by the authors suggesting that eligibility criteria for controlled trials requiresymptoms be "severe enough to interfere with the patient's ability to function". This line ofreasoning is simply astounding in its unsophistication and insensitivity. The committee's statements about controlled trials and documented disease history is admirable and would be more so if the medical community was fully engaged in an environment in which, as in HIV research, the best minds were involved and funded in the pursuit of the study of this illnesscomplex. Patients know what has made them better and it is highly insulting to patients whoare denied care or who had irreversible adverse health consequences to themselves or theirloved ones because of suspect motivations by those who now hold power…….almostcertainly the patient's interest is not the primary concern in this story.IN SUMMARYOpen attempts to intimidate the Connecticut Attorney General, physicians, and patients are notlending credibility to those who are perpetrating this behavior. Nevertheless, the politicization of an illness for which many people are tragically suffering, and who are afforded very little credence by the scientific community when evidence shows their illness is real, and who are subjected to increasingly narrow treatment options, may indeed be approaching not only anti-trust violations, but scientific fraud on a grand scale.The public confusion comes not just from the myriad of symptoms or the restrictive definition of the illness itself, but also from physicians and patients who are well aware of the illness within their own bodies, and who are confounded by the unwillingness of the scientific community to embrace a medical illness of such major significance. Rather, many perceive an increasing plaintive and obvious disregard for the welfare of thousands of patients by a small number of individuals entrenched in power and trapped within their logic loops, whether these loops are genuinely believed, or contrived. Inaction issomehow justified on the basis of a lack of double-blind, randomized studies. Regrettably, there also appears to be a barrier to publication of dissenting views by the editors and reviewers of established journals. The public, including some physicians, do know how to read, after all, and patents and a pattern of interpretative reversal in research opinions speak volumes about the truth of LBC. So does successful resolution of symptoms through open-ended, long-term antibiotic treatment of Lyme disease.In this complex illness, therapy is most often successful, i.e. life restoring, when it is patterned on an increasingly sophisticated understanding of the many interwoven issues involved in the illness, and in the successful integration of therapies which address the immunosuppressive, multi-systemic, polymicrobial disease complex which is LBC. Most of us deeply involved in patient care don't care who takes credit for change, and realize that traditional powers must engage for this to happen. We encourage this at every opportunity. Physicians and patients are earnestly waiting for the truth to be revealed, and we hope that this truth will arise from the medical community in a proactive and vigorously engaged manner. LBC is just part of what is driving an epidemic of unwellness and chronic illness in this country. The paradigm of medicine and chronic illness must change over time………toomany of us are sick and getting sicker.[1] Feder HM Jr, BJB, O'Connell S, Shapiro ED, Steere AC, Wormser GP, and the Ad HocInternational Lyme Disease Group*. NEJM. 2007 Oct 4;357(14):1422-1430. A review article[2] Wormser GP, Dattwyler RJ, Shapiro ED, Halperin JJ, Steere AC, Klempner MS, Krause PJ, BakkenJS, Strle F, Stanek G, Bockenstedt L, Fish D, Dumler JS, Nadelman RB. "The Clinical Assessment,Treatment, and Prevention of Lyme Disease, Human Granulocytic Anaplasmosis, and Babesiosis:Clinical Practice Guidelines by the Infectious Diseases Society of America." Clinical InfectiousDiseases 2006;43:1089-1134. --------------------------------------------------------------------