Re: To El - Re: Lyme disease info and anti-TNF meds

[Guest guest]

Dear Maz,

The last para did the trick for me (I bolded it below). I never heard about

the Lyme's cyst. I'll be contacting my Dr. about them. I tested positive

for Lyme's. I took Minocin and then Diflucan and a little Biaxin. My body

seemed to like Diflucan but not Biaxin. Many thanks.

Happy New Year to all. El

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of momazmat@...

Sent: Wednesday, December 31, 2008 2:57 PM

rheumatic

Subject: rheumatic To El - Re: Lyme disease info and anti-TNF meds

>>>Can anyone translate the below into something

short/sweet/understandable/the

bottom line? I have no idea what anti-TNF therapy is and my brain is not

working well enough today to comprehend the below. <<<

Hi El,

My layman's interpretation of the Columbia Lyme research article is that TNF

Blockers (ie. the biologics like Enbrel, Humira and Remicade), while

blocking

tumor-necrosis factor in the rheumatic, thereby suppressing the immune

system,

enables the dormant cystic form of borrelioisis to re-emerge into

spirochetal

form and active disease.

In effect, the borrelia spirochete has many pleomorphic forms and the

spirochete has the ability to burrow into every tissue within the body,

often

reverting to a dormant firn in this antibiotic resistant state (hence why

anyone with

Lyme needs to also take cyst-busting medication simulataneously - mino or

another tetracycline alone won't hack it).

When the immune system is suppressed by a biologic, however, the opposite

happens...the dormant cysts rebirth into their spirochetal form in patients

who

were previously tested and thought to be Lyme-free. In other words, if you

have

do indeed have Lyme and test negative, it only means you are seronegative

for

Lyme and not that one doesn't have it. It's just that it is hiding in the

tissues from the immune system and therefore there will not be enough

antibody to

test in the blood serum.

What I'm inferring from this article is that anyone who tests negative for

Lyme before taking a biologic would be well-advised to get re-tested for

Lyme

after commencing a TNF-blocker, as it is more likely that tests will return

positive.

In the most basic terms....immune-suppression of Lyme is ill advised,

because

this only allows borreliosis free reign to do its dirty work. It's also very

important for anyone with Lyme to also take cyst-busting medication (e.g.

flagyl, plaquenil or zith) to also attack the dormant form of Lyme which

occurs as

a result of antibiotic therapy (spirochetes driven into their cystic forms

by

antibiotic therapy). It is the cystic form of borrelia which causes

persistence and waxing and waning symptoms, in addition to possible

tickborne

coinfections which may need separate medications (e.g. babesia may need

antiprotozoals). Most Lyme patients are coinfected and if these aren't

treated, this can also

create persistence.

Happy New Year to all on rheumatic.org!

Peace, Maz

[Guest guest]

This is a terrific explanation of how co-infections work and why some

antibiotics do not work.  Thank you, This is going into my file for future

reference.  Thank you very much again and have a happy, happy New Year. Dolores

& Mike

From: ehgooding <ehgooding@...>

Subject: RE: rheumatic To El - Re: Lyme disease info and anti-TNF meds

rheumatic

Date: Wednesday, December 31, 2008, 3:05 PM

Dear Maz,

The last para did the trick for me (I bolded it below). I never heard about

the Lyme's cyst. I'll be contacting my Dr. about them. I tested positive

for Lyme's. I took Minocin and then Diflucan and a little Biaxin. My body

seemed to like Diflucan but not Biaxin. Many thanks.

Happy New Year to all. El

_____

From: rheumatic@grou ps.com [mailto:rheumatic@grou ps.com] On Behalf

Of momazmatcs (DOT) com

Sent: Wednesday, December 31, 2008 2:57 PM

rheumatic@grou ps.com

Subject: rheumatic To El - Re: Lyme disease info and anti-TNF meds

>>>Can anyone translate the below into something

short/sweet/ understandable/ the

bottom line? I have no idea what anti-TNF therapy is and my brain is not

working well enough today to comprehend the below. <<<

Hi El,

My layman's interpretation of the Columbia Lyme research article is that TNF

Blockers (ie. the biologics like Enbrel, Humira and Remicade), while

blocking

tumor-necrosis factor in the rheumatic, thereby suppressing the immune

system,

enables the dormant cystic form of borrelioisis to re-emerge into

spirochetal

form and active disease.

In effect, the borrelia spirochete has many pleomorphic forms and the

spirochete has the ability to burrow into every tissue within the body,

often

reverting to a dormant firn in this antibiotic resistant state (hence why

anyone with

Lyme needs to also take cyst-busting medication simulataneously - mino or

another tetracycline alone won't hack it).

When the immune system is suppressed by a biologic, however, the opposite

happens...the dormant cysts rebirth into their spirochetal form in patients

who

were previously tested and thought to be Lyme-free. In other words, if you

have

do indeed have Lyme and test negative, it only means you are seronegative

for

Lyme and not that one doesn't have it. It's just that it is hiding in the

tissues from the immune system and therefore there will not be enough

antibody to

test in the blood serum.

What I'm inferring from this article is that anyone who tests negative for

Lyme before taking a biologic would be well-advised to get re-tested for

Lyme

after commencing a TNF-blocker, as it is more likely that tests will return

positive.

In the most basic terms....immune- suppression of Lyme is ill advised,

because

this only allows borreliosis free reign to do its dirty work. It's also very

important for anyone with Lyme to also take cyst-busting medication (e.g.

flagyl, plaquenil or zith) to also attack the dormant form of Lyme which

occurs as

a result of antibiotic therapy (spirochetes driven into their cystic forms

by

antibiotic therapy). It is the cystic form of borrelia which causes

persistence and waxing and waning symptoms, in addition to possible

tickborne

coinfections which may need separate medications (e.g. babesia may need

antiprotozoals) . Most Lyme patients are coinfected and if these aren't

treated, this can also

create persistence.

Happy New Year to all on rheumatic.org!

Peace, Maz

[Guest guest]

This is a terrific explanation of how co-infections work and why some

antibiotics do not work.  Thank you, This is going into my file for future

reference.  Thank you very much again and have a happy, happy New Year.

From: ehgooding <ehgooding@...>

Subject: RE: rheumatic To El - Re: Lyme disease info and anti-TNF meds

rheumatic

Date: Wednesday, December 31, 2008, 3:05 PM

Dear Maz,

The last para did the trick for me (I bolded it below). I never heard about

the Lyme's cyst. I'll be contacting my Dr. about them. I tested positive

for Lyme's. I took Minocin and then Diflucan and a little Biaxin. My body

seemed to like Diflucan but not Biaxin. Many thanks.

Happy New Year to all. El

_____

From: rheumatic@grou ps.com [mailto:rheumatic@grou ps.com] On Behalf

Of momazmatcs (DOT) com

Sent: Wednesday, December 31, 2008 2:57 PM

rheumatic@grou ps.com

Subject: rheumatic To El - Re: Lyme disease info and anti-TNF meds

>>>Can anyone translate the below into something

short/sweet/ understandable/ the

bottom line? I have no idea what anti-TNF therapy is and my brain is not

working well enough today to comprehend the below. <<<

Hi El,

My layman's interpretation of the Columbia Lyme research article is that TNF

Blockers (ie. the biologics like Enbrel, Humira and Remicade), while

blocking

tumor-necrosis factor in the rheumatic, thereby suppressing the immune

system,

enables the dormant cystic form of borrelioisis to re-emerge into

spirochetal

form and active disease.

In effect, the borrelia spirochete has many pleomorphic forms and the

spirochete has the ability to burrow into every tissue within the body,

often

reverting to a dormant firn in this antibiotic resistant state (hence why

anyone with

Lyme needs to also take cyst-busting medication simulataneously - mino or

another tetracycline alone won't hack it).

When the immune system is suppressed by a biologic, however, the opposite

happens...the dormant cysts rebirth into their spirochetal form in patients

who

were previously tested and thought to be Lyme-free. In other words, if you

have

do indeed have Lyme and test negative, it only means you are seronegative

for

Lyme and not that one doesn't have it. It's just that it is hiding in the

tissues from the immune system and therefore there will not be enough

antibody to

test in the blood serum.

What I'm inferring from this article is that anyone who tests negative for

Lyme before taking a biologic would be well-advised to get re-tested for

Lyme

after commencing a TNF-blocker, as it is more likely that tests will return

positive.

In the most basic terms....immune- suppression of Lyme is ill advised,

because

this only allows borreliosis free reign to do its dirty work. It's also very

important for anyone with Lyme to also take cyst-busting medication (e.g.

flagyl, plaquenil or zith) to also attack the dormant form of Lyme which

occurs as

a result of antibiotic therapy (spirochetes driven into their cystic forms

by

antibiotic therapy). It is the cystic form of borrelia which causes

persistence and waxing and waning symptoms, in addition to possible

tickborne

coinfections which may need separate medications (e.g. babesia may need

antiprotozoals) . Most Lyme patients are coinfected and if these aren't

treated, this can also

create persistence.

Happy New Year to all on rheumatic.org!

Peace, Maz

[Guest guest]

Hi El,

>>>I never heard about the Lyme's cyst. I'll be contacting my Dr. about them.

I tested positive for Lyme's. I took Minocin and then Diflucan and a little

Biaxin. My body

seemed to like Diflucan but not Biaxin. <<<

Thought you might like to have this study, which is very new (Sept 08),

demonstrating the persistence of Lyme in its cystic form:

" Persisting atypical and cystic forms of Borrelia burgdorferi and local

inflammation in Lyme neuroborreliosis " -

http://www.jneuroinflammation.com/content/5/1/40

Also, the Lyme Disease Association has videos of past Lyme conferences where

researchers have spoken on the topic. If you go to this link and scroll down,

you'll find a couple of videos describing the cystic form of borrelia. Some of

these researchers are deadly boring to listen to, but your average doc...even

most AP docs will not have much knowledge about Lyme treatment...it's really

the territory of a Lyme Literate physician (LLMD):

http://lymediseaseassociation.org/VideoView.html

A classic example of someone not getting fully well on AP due to cystic Lyme

coinfections was a lady I spoke with about a month ago for the first time in

MA. She had been on AP for RA since the early/mid 90s, also having regular IVs

in Iowa with the wonderful Dr S. She did well, but never quite got well and

relapsed badly after a bout with breast cancer a few years ago and couldn't get

back her previous level of wellness of AP. She went to a Lyme Literate

physician in NYC and he diagnosed babesia, a coinfection of Lyme and hit her up

with

heavy doses of Mepron (750mg), Mino (300 mg), Plaquenil and Zith (500mg) to go

after both the babesia and cystic form of Lyme. In the meantime, she got the

full panel of tests done at IGeneX labs which came back negative on every band

for borreliosis, but highly positive for babesia. It's clear she had been

bitten by a tick in the early 90s (her doc told her it was a spider bite!) and

that this is what triggered her RA a couple months later...and that the AP had

managed to somewhat control the borreliosis...but that the borrelia had

reverted to cystic form. When she became so unwell with breast cancer and

treatments,

the cystic form sprang back to life and the longstanding, untreated babesia

was having a field day. I spoke to her again a couple weeks into her heavy Lyme

protocol, expecting that she would be herxing like mad. She reported she

hadn't been feeling this good in years...no joint pain and the costochondritis

had

cleared up. The worst of it was very bad fatigue late in the day (after a

full day of work!).

El, hope the above study helps when you speak with your physician.

Hi Dolores! Hope you had a wonderful holiday and that you are well!

Peace, Maz

[Guest guest]

Hi Maz,

This is great info. My Dr.'s daughter had an extremely bad case of Lyme's;

almost died, so he is very interested in any info I bring him. I'll

definitely share this. Many thanks, El

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of momazmat@...

Sent: Thursday, January 01, 2009 2:55 PM

rheumatic

Subject: rheumatic Re: To El - Re: Lyme disease info and anti-TNF meds

Hi El,

>>>I never heard about the Lyme's cyst. I'll be contacting my Dr. about

them.

I tested positive for Lyme's. I took Minocin and then Diflucan and a little

Biaxin. My body

seemed to like Diflucan but not Biaxin. <<<

Thought you might like to have this study, which is very new (Sept 08),

demonstrating the persistence of Lyme in its cystic form:

" Persisting atypical and cystic forms of Borrelia burgdorferi and local

inflammation in Lyme neuroborreliosis " -

http://www.jneuroin <http://www.jneuroinflammation.com/content/5/1/40>

flammation.com/content/5/1/40

Also, the Lyme Disease Association has videos of past Lyme conferences where

researchers have spoken on the topic. If you go to this link and scroll

down,

you'll find a couple of videos describing the cystic form of borrelia. Some

of

these researchers are deadly boring to listen to, but your average

doc...even

most AP docs will not have much knowledge about Lyme treatment...it's really

the territory of a Lyme Literate physician (LLMD):

http://lymediseasea <http://lymediseaseassociation.org/VideoView.html>

ssociation.org/VideoView.html

A classic example of someone not getting fully well on AP due to cystic Lyme

coinfections was a lady I spoke with about a month ago for the first time in

MA. She had been on AP for RA since the early/mid 90s, also having regular

IVs

in Iowa with the wonderful Dr S. She did well, but never quite got well and

relapsed badly after a bout with breast cancer a few years ago and couldn't

get

back her previous level of wellness of AP. She went to a Lyme Literate

physician in NYC and he diagnosed babesia, a coinfection of Lyme and hit her

up with

heavy doses of Mepron (750mg), Mino (300 mg), Plaquenil and Zith (500mg) to

go

after both the babesia and cystic form of Lyme. In the meantime, she got the

full panel of tests done at IGeneX labs which came back negative on every

band

for borreliosis, but highly positive for babesia. It's clear she had been

bitten by a tick in the early 90s (her doc told her it was a spider bite!)

and

that this is what triggered her RA a couple months later...and that the AP

had

managed to somewhat control the borreliosis...but that the borrelia had

reverted to cystic form. When she became so unwell with breast cancer and

treatments,

the cystic form sprang back to life and the longstanding, untreated babesia

was having a field day. I spoke to her again a couple weeks into her heavy

Lyme

protocol, expecting that she would be herxing like mad. She reported she

hadn't been feeling this good in years...no joint pain and the

costochondritis had

cleared up. The worst of it was very bad fatigue late in the day (after a

full day of work!).

El, hope the above study helps when you speak with your physician.

Hi Dolores! Hope you had a wonderful holiday and that you are well!

Peace, Maz

[Guest guest]

Hi Maz, Hope you had a wonderful holiday season starting from Thanksgiving till

now.  Seems to me this is the year we have to get real serious about helping

everyone to better health including ourselves.  I am learning so much about

Lyme's disease because of these wonderful posts.  Never paid much attention to

it because I have S/D, but I am now seeing how this is all connected.  My New

Year's is to finish the book, and start a support group here in Pensacola.  Plus

to keep on studying and talking with my Infectious Disease Doc.  Keep up the

good work, we never cease to keep on learning and thank you for these eye

openers.  Keep posting.  The best to you all, Dolores & Mike

From: ehgooding <ehgooding@...>

Subject: RE: rheumatic Re: To El - Re: Lyme disease info and anti-TNF meds

rheumatic

Date: Thursday, January 1, 2009, 4:20 PM

Hi Maz,

This is great info. My Dr.'s daughter had an extremely bad case of Lyme's;

almost died, so he is very interested in any info I bring him. I'll

definitely share this. Many thanks, El

_____

From: rheumatic@grou ps.com [mailto:rheumatic@grou ps.com] On Behalf

Of momazmatcs (DOT) com

Sent: Thursday, January 01, 2009 2:55 PM

rheumatic@grou ps.com

Subject: rheumatic Re: To El - Re: Lyme disease info and anti-TNF meds

Hi El,

>>>I never heard about the Lyme's cyst. I'll be contacting my Dr. about

them.

I tested positive for Lyme's. I took Minocin and then Diflucan and a little

Biaxin. My body

seemed to like Diflucan but not Biaxin. <<<

Thought you might like to have this study, which is very new (Sept 08),

demonstrating the persistence of Lyme in its cystic form:

" Persisting atypical and cystic forms of Borrelia burgdorferi and local

inflammation in Lyme neuroborreliosis " -

http://www.jneuroin <http://www.jneuroin flammation. com/content/ 5/1/40>

flammation.com/ content/5/ 1/40

Also, the Lyme Disease Association has videos of past Lyme conferences where

researchers have spoken on the topic. If you go to this link and scroll

down,

you'll find a couple of videos describing the cystic form of borrelia. Some

of

these researchers are deadly boring to listen to, but your average

doc...even

most AP docs will not have much knowledge about Lyme treatment... it's really

the territory of a Lyme Literate physician (LLMD):

http://lymediseasea <http://lymediseasea ssociation. org/VideoView. html>

ssociation.org/ VideoView. html

A classic example of someone not getting fully well on AP due to cystic Lyme

coinfections was a lady I spoke with about a month ago for the first time in

MA. She had been on AP for RA since the early/mid 90s, also having regular

IVs

in Iowa with the wonderful Dr S. She did well, but never quite got well and

relapsed badly after a bout with breast cancer a few years ago and couldn't

get

back her previous level of wellness of AP. She went to a Lyme Literate

physician in NYC and he diagnosed babesia, a coinfection of Lyme and hit her

up with

heavy doses of Mepron (750mg), Mino (300 mg), Plaquenil and Zith (500mg) to

go

after both the babesia and cystic form of Lyme. In the meantime, she got the

full panel of tests done at IGeneX labs which came back negative on every

band

for borreliosis, but highly positive for babesia. It's clear she had been

bitten by a tick in the early 90s (her doc told her it was a spider bite!)

and

that this is what triggered her RA a couple months later...and that the AP

had

managed to somewhat control the borreliosis. ..but that the borrelia had

reverted to cystic form. When she became so unwell with breast cancer and

treatments,

the cystic form sprang back to life and the longstanding, untreated babesia

was having a field day. I spoke to her again a couple weeks into her heavy

Lyme

protocol, expecting that she would be herxing like mad. She reported she

hadn't been feeling this good in years...no joint pain and the

costochondritis had

cleared up. The worst of it was very bad fatigue late in the day (after a

full day of work!).

El, hope the above study helps when you speak with your physician.

Hi Dolores! Hope you had a wonderful holiday and that you are well!

Peace, Maz