OT Lyme again

[Guest guest]

I've heard mixed things about Columbia. Go to Lymenet.org and do a search. While you are there, you can find a LLMD in your area, which is probably the best starting place. Good luck.

In a message dated 12/8/2008 10:10:06 A.M. Eastern Standard Time, jodah235@... writes:

Anyone get evaluated here?I am being considered for evaluation with my current symptoms that areexacerbated on LDN? Maybe this is the reason why I have never gottenbetter and just got worse over the years?http://www.columbia-lyme.org/Jodi Make your life easier with all your friends, email, and favorite sites in one place. Try it now.

[Guest guest]

Anyone get evaluated here?

I am being considered for evaluation with my current symptoms that are

exacerbated on LDN? Maybe this is the reason why I have never gotten

better and just got worse over the years?

http://www.columbia-lyme.org/

Jodi

[Guest guest]

Columbia may be good for documentation, but for treatment, I tend to doubt it. If ABX mess you up, then what about low-dose therapy, or pulse therapy, like The Road Back, or what they do at Cpnhelp.org ? Maybe these would help. ???

You may need to do milder alternatives if herxing causes unbearable immune responses. Oddly, I was in that position too, where any therapy caused more damage than help, due to crazy immune response, until I got settled in on LDN. Now I can tolerate moderate herxing much better.

I wish I had better ideas for you, but you sound like a pretty smart person, who has done tons of research already. You may need to concentrate on detox, IV glutathione and so forth, for a time until you can tolerate the antimicrobials. I would stay away from that bismouth therapy, however, as you probebly know, since it is pretty dangerous.

I wish you the best. if I can be of any help, feel free to write. Good luck.

In a message dated 12/8/2008 2:05:58 P.M. Eastern Standard Time, jodah235@... writes:

I have seen two LLMD's and talked to another on the phone.One has referred me to Columbia, the other to an alternative clinicand the other just wants to do IV antibiotics.I get severely ill from antibiotics- which had lead to hospitalizations.Perhaps this is due to the fact that I would Herx from the ABX?!?! butno one at the time even thought about various Lyme issues- I have-never- been tested in all of these years.. The first time I wastested was a little while before I started LDN as I have bad joint aches.I do not feel I can afford to get so incredibly ill from antibiotictherapy- not to mention what it does to my gut.I don't even know what we are dealing with- LLMD's don't even know. Some docs think it might be bad fibro. Although Fibro would not getthis bad on LDN.I truly feel that with long term Lyme there is no one size fits all. Recently, I learned I can be dealing with "post Lyme disease" Ihaven't even started researching about this.I would like to know the extent of the damage and then find some wayto treat this alternatively as I think for me the key is regaining andmaintaining immune health- as with that I will be able to fight offmany things...I have done alternative treatments in Canada where it's sort of likeBlood oxidative therapy- with various injectables this is the firstthing I did (with laser therapy from the Hyper Photon machine) to evermake me feel better. I believe the feeling never lasted as I need todo this type of treatment long term- today I know it was working onthe Lyme and Co issues.. I felt the cloud lift, the brain fog getbetter and my body felt so much looser.Jodi>> I've heard mixed things about Columbia. Go to Lymenet.org and do asearch. > While you are there, you can find a LLMD in your area, which is probably the > best starting place. Good luck. Make your life easier with all your friends, email, and favorite sites in one place. Try it now.

[Guest guest]

I have seen two LLMD's and talked to another on the phone.

One has referred me to Columbia, the other to an alternative clinic

and the other just wants to do IV antibiotics.

I get severely ill from antibiotics- which had lead to hospitalizations.

Perhaps this is due to the fact that I would Herx from the ABX?!?! but

no one at the time even thought about various Lyme issues- I have

-never- been tested in all of these years.. The first time I was

tested was a little while before I started LDN as I have bad joint aches.

I do not feel I can afford to get so incredibly ill from antibiotic

therapy- not to mention what it does to my gut.

I don't even know what we are dealing with- LLMD's don't even know.

Some docs think it might be bad fibro. Although Fibro would not get

this bad on LDN.

I truly feel that with long term Lyme there is no one size fits all.

Recently, I learned I can be dealing with " post Lyme disease " I

haven't even started researching about this.

I would like to know the extent of the damage and then find some way

to treat this alternatively as I think for me the key is regaining and

maintaining immune health- as with that I will be able to fight off

many things...

I have done alternative treatments in Canada where it's sort of like

Blood oxidative therapy- with various injectables this is the first

thing I did (with laser therapy from the Hyper Photon machine) to ever

make me feel better. I believe the feeling never lasted as I need to

do this type of treatment long term- today I know it was working on

the Lyme and Co issues.. I felt the cloud lift, the brain fog get

better and my body felt so much looser.

Jodi

>

> I've heard mixed things about Columbia. Go to Lymenet.org and do a

search.

> While you are there, you can find a LLMD in your area, which is

probably the

> best starting place. Good luck.

[Guest guest]

>

> I have seen two LLMD's and talked to another on the phone.

> One has referred me to Columbia, the other to an alternative clinic

> and the other just wants to do IV antibiotics.

>

> I get severely ill from antibiotics- which had lead to

hospitalizations.

>

> Perhaps this is due to the fact that I would Herx from the ABX?!?!

but

> no one at the time even thought about various Lyme issues- I have

> -never- been tested in all of these years.. The first time I was

> tested was a little while before I started LDN as I have bad joint

aches.

>

> I do not feel I can afford to get so incredibly ill from antibiotic

> therapy- not to mention what it does to my gut.

>

> I don't even know what we are dealing with- LLMD's don't even know.

> Some docs think it might be bad fibro. Although Fibro would not get

> this bad on LDN.

>

> I truly feel that with long term Lyme there is no one size fits

all.

> Recently, I learned I can be dealing with " post Lyme disease " I

> haven't even started researching about this.

>

> I would like to know the extent of the damage and then find some way

> to treat this alternatively as I think for me the key is regaining

and

> maintaining immune health- as with that I will be able to fight off

> many things...

>

> I have done alternative treatments in Canada where it's sort of like

> Blood oxidative therapy- with various injectables this is the first

> thing I did (with laser therapy from the Hyper Photon machine) to

ever

> make me feel better. I believe the feeling never lasted as I need

to

> do this type of treatment long term- today I know it was working on

> the Lyme and Co issues.. I felt the cloud lift, the brain fog get

> better and my body felt so much looser.

>

> Jodi

====================

For an alternative clinical trialed treatment for lyme see below,

it's listed on my LDN forum.

's LDN site

Allimax completes clinical trial for treating Lyme

http://tinyurl.com/5oxgwa

below is the real link that is too long to print fully in hypertext

so I made a tiny URL above.

's LDN site, Allimax completes clinical trial for treating Lyme

http://ldn.proboards3.com/index.cgi?

board=links & action=display & thread=795

[Guest guest]

Lyme is a very complex and dangerous disease! Lyme can lead to

extreme rapid disability and even death.

Exercise great caution while pursuing treatments. Be especially

cautious of taking complex medical advice from non-licensed people

that habitually call their disease " Lymes " .

Antibiotics aren't so bad if we have a fatal infection. Find a

competent Lyme Literate Medical Doctor (LLMD) to guide your treatment.

A competent qualified LLMD should be able to guide you on a

successful Lyme treatment.

> >

> > I've heard mixed things about Columbia. Go to Lymenet.org and do a

> search.

> > While you are there, you can find a LLMD in your area, which is

> probably the

> > best starting place. Good luck.

>

[Guest guest]

Hi :

How did you hear about this stuff?

Do you know anyone who has taken it and been successful?

Been successful with eradicating Lyme?

Thank you for all of your help and constant guidance- I really

appreciate it.

Jodi

====================

>

> For an alternative clinical trialed treatment for lyme see below,

> it's listed on my LDN forum.

>

> 's LDN site

> Allimax completes clinical trial for treating Lyme

> http://tinyurl.com/5oxgwa

>

> below is the real link that is too long to print fully in hypertext

> so I made a tiny URL above.

>

> 's LDN site, Allimax completes clinical trial for treating Lyme

> http://ldn.proboards3.com/index.cgi?

> board=links & action=display & thread=795

>

[Guest guest]

Jodi,

The other day you wrote you went up to 4.5 and the Lyme

symptoms got worse again.

Have you thought about going back and staying at 3

for a while while your gut heals, so that the Lyme symptoms

don't hit you as badly as they are now? Since even the 3

seemed to be effective for you.

Just a thought.

Mara

[Guest guest]

Someone on this forum posted about it(clinical trial) and I've been

watching the results of all their other trials with it also. This

trial was completed I believe last year. Don't know of anyone on it

for lyme. I'm on it for candida yeast and other health benefits

=========

>

> Hi :

>

> How did you hear about this stuff?

> Do you know anyone who has taken it and been successful?

> Been successful with eradicating Lyme?

>

> Thank you for all of your help and constant guidance- I really

> appreciate it.

>

> Jodi

>

>

> ====================

> >

> > For an alternative clinical trialed treatment for lyme see below,

> > it's listed on my LDN forum.

> >

> > 's LDN site

> > Allimax completes clinical trial for treating Lyme

> > http://tinyurl.com/5oxgwa

> >

> > below is the real link that is too long to print fully in

hypertext

> > so I made a tiny URL above.

> >

> > 's LDN site, Allimax completes clinical trial for treating

Lyme

> > http://ldn.proboards3.com/index.cgi?

> > board=links & action=display & thread=795

> >

>

[Guest guest]

Yeah.. brought this to my attention earlier today.

I will talk to my docs and see how it goes.

Part of me feels if I am going to go through this I might as well get

it over with anyway..

Part of me feels there is this dangling carrot in front of me..

Jodi

>

> Jodi,

>

> The other day you wrote you went up to 4.5 and the Lyme

> symptoms got worse again.

>

> Have you thought about going back and staying at 3

> for a while while your gut heals, so that the Lyme symptoms

> don't hit you as badly as they are now? Since even the 3

> seemed to be effective for you.

>

> Just a thought.

>

> Mara

>

[Guest guest]

,

I have bad yeast issues.

Do you find this to be helping you?

If you don't mind my asking what other health benefits do you get from it?

Jodi

>

>

> Someone on this forum posted about it(clinical trial) and I've been

> watching the results of all their other trials with it also. This

> trial was completed I believe last year. Don't know of anyone on it

> for lyme. I'm on it for candida yeast and other health benefits

[Guest guest]

>

> ,

>

> I have bad yeast issues.

> Do you find this to be helping you?

> If you don't mind my asking what other health benefits do you get

from it?

>

> Jodi

==============

Allimax has been developed to combat Antibiotic

resistant infections such as MRSA.

Allimax is a broad spectrum natural antibiotic that

combats bacterial, viral, parasitic, and fungal infections.

Physician's strength Allicin, Allisure, MRSA, Antibiotic resistant

bacteria

British scientists have developed a proprietary process through which

the naturally occurring allicin in garlic is extracted, stabilized

and concentrated. The end result is the extremely potent and

effective product. Allimax, stabilized allicin is the result of a

patented process which produces purified, living-source, completely

stable allicin-for the first time in history. Allicin is not garlic -

but the fully potent, active factor in concentrated form, never

before available. It has broad spectrum, anti-infective properties

coupled with strong, immune boosting and immunomodulating capacity.

This makes stabilized allicin a highly significant antimicrobial

clinical agent, especially in today's world of widespread infections

and with the creation of new forms of multi drug resistant super bugs

that have emerged due to the overuse of traditional antibiotics.

At last, genuine stabilized allicin provides controlled, gentle, yet

exquisitely through biofilm degradation and destruction, critical to

overcoming many chronic illnesses, often recalcitrant to many other

means. Many doctors have seen miracles for chronic acne, sinusitis,

intestinal dysbiosis, prostate bacterial infections, MRSA, H-Pylori,

Parasites, Flukes, Pseudomonas, and severe biofilm congestion in many

other organs and glands.

New stunning worldwide research in the past decade has linked the

majority of chronic degenerative diseases, once believed to be due to

poor lifestyle choices, genetics or other factors, instead to hidden

infections, previously undiagnosed until the recent advent of more

sophisticated techniques (such as PCR- polymerase chain technology).

For example, kidney stones have now been linked to nanobacterial

infection. Over 80% of heart disease has been linked to infection by

Chlamydia pneumoniae.

==

I've only been on it a few days but do notice some positives today

just in my energy level, it's up some. It is an antifungal of which

candida yeast is(fungal). But, nothing will work well and stick if

we do not eliminate from our diets...all yeasty products, dairy and

sugar(fuels candida). I fell off the wagon and now my yeast is

building again. If i keep on and the yeast gets bad my LDN will most

likely not perform well.

[Guest guest]

Thank you ..

I will really look into this.

Jodi

> I've only been on it a few days but do notice some positives today

> just in my energy level, it's up some. It is an antifungal of which

> candida yeast is(fungal). But, nothing will work well and stick if

> we do not eliminate from our diets...all yeasty products, dairy and

> sugar(fuels candida). I fell off the wagon and now my yeast is

> building again. If i keep on and the yeast gets bad my LDN will most

> likely not perform well.

>

[Guest guest]

HI Jodi

Can you tell me how long you’ve been taking LDN for

Lyme please and whether you feel it’s working?

I’ve just chanced upon this use for it whilst

researching it for use for my sister, who has cancer.

I have chronic Lyme, and like you, struggle big time with

antibiotics. I have improved greatly with occasional Ivermectin and

Azithromycin, but mainly Samento for the last 2 years, (after being told I had

ME for 8 years by NHS), after diagnosis privately.

However, I have reached a plateau and am worried that I’ll

never regain my health fully.

I would love to try LDN but would like to hear more about

its use in this way first!

BTW, I took very high doses of garlic for many years for

horrendous candida symptoms. It helped the candida but not the Lyme..........

BW

Emma

[Guest guest]

Hi Emma,

I take LDN for Crohn's/Colitis. It is really helping my bowel issues.

A little while before starting LDN I was tested for Lyme and

Co-infections. The Co-Infections are positive and the Lyme is suspect.

After reading various data out there and talking to some people I

learned that often times the chronically ill have the antibodies that

would show up in co-infections as a positive. So, I was skeptical

about the whole thing... Than, I started LDN and as my GI has been

improving -significantly- the " Lyme and Co " symptoms have become very

weird. Things I never really experienced in my life to such an

intense extent. I have had bouts of debilitating Arthritis (in

different locations) but it would go away after Vioxx and a shot of

Toradol I also have various multiple chemical sensitivities. But

this- the body aches and stiffness and cognitive issues were never

that bad. When I first got sick when I was younger it started out as

horrible body aches and stiffness, headaches etc- and I had to stop

going to school.

I started LDN and it is helping The Gastro situation but it's

challenging in other ways. So, I am unsure of how to answer your

question in the sense that I don't even know if I am a Lymie- With

that said perhaps LDN being the issues to the surface might make it

easier to treat?

Jodi

Crohn's/Colitis

[Guest guest]

The same happened to me. LDN produced an intense exacerbation of Lyme

symptoms and several new ones began. It was the main reason I was

diagnosed with Lyme, otherwise I might have gone through life just

vaguely ill, thinking I had chronic fatigue and ADD.

The thing that is important to understand about Lyme is that the

bacteria themselves can be really low key for long periods of time.

They are parasites that need a living host, and it isn't in their

interest to attract attention from the immune system or to kill you.

They invade the tissues that are difficult for the immune system to

reach, joints, the brain, around the heart. They are munching on

collagen and causing things to deteriorate in other ways, but they do

not usually multiply in massive numbers. If you are young and

otherwise healthy, you may be able to replace collagen in your joints

at the same rate as they eat it. You might have no joint swelling or

aching at all, for years. In the brain, you can go your entire life

with the Lyme spirochetes up there and not feel their impact until you

are diagnosed with Alzheimer's.

When you have Lyme and you take LDN, its like equipping your immune

system with infrared nightvision bincoulars. It becomes aware of

infection that it previously ignored and attacks aggressively. The

majority of Lyme symptoms are a result of inflammation produced by

your immune system's attack on the bacteria. So it is no surprise

that Lyme symptoms flare on LDN.

If you have small numbers of the spirochetes present, and your immune

system has not been seriously damaged or affected by Lyme (this can be

quantified with CD-57 Natural Killer cell counts and white blood

count), you might be able to beat them down with LDN alone. Maybe

your symptoms will flare for a period of time as war ensues, and then

as the spirochetes dwindle in number, the immune response diminishes

and you feel better than ever. You'd want to stay on LDN indefinitely

because Lyme is virtually impossible to fully eradicate from the body.

By the way, for alot of you that have " MS " and are put into remission

with LDN, this particular Lyme scenario is a likely explanation

(something like 66% of " MS " patients test positive for Lyme, with the

poor insensitive testing currently available)

If you have large numbers of spirochetes present, and your immune

system has been affected (my CD57=36, WBC=3.5), LDN may produce an

intolerably severe flare as it did with my mother and I (both of us

have Lyme, undiagnosed for 20+ years). Because some of my Lyme

symptoms are heart related, including palpitations, MVP, chest pain,

the flare LDN produced with regard to those symptoms felt downright

life-threatening. I thought for sure I was having a heart attack a

couple times, with pressure in my chest, pain radiating to shoulder

and jaw, and other classic heart attack symptoms.

I want desperately to take LDN because I am so impressed with its

ability to boost the immune system in a powerful way. However, I have

resigned myself to bringing the numbers of bacteria down to a

reasonable level first with antibiotics, before I attempt to introduce

LDN again. I'm taking things like tetracycline, biaxin, ceftin, and

my symptoms are definitely improving (including MS-like symptoms of

muscle stiffness and weakness). When I feel I have made some more

progress I will CAUTIOUSLY try LDN again at a low dose and try to

endure it and ramp it up slowly. I think it will be key in

maintaining any remission or progress that the antibiotics provide.

So Jodi, in summary I think you should consider getting effective

antibiotic treatment for Lyme by an LLMD.

-

> Than, I started LDN and as my GI has been

> improving -significantly- the " Lyme and Co " symptoms have become very

> weird. Things I never really experienced in my life to such an

> intense extent. I have had bouts of debilitating Arthritis (in

> different locations) but it would go away after Vioxx and a shot of

> Toradol I also have various multiple chemical sensitivities. But

> this- the body aches and stiffness and cognitive issues were never

> that bad. When I first got sick when I was younger it started out as

> horrible body aches and stiffness, headaches etc- and I had to stop

> going to school.

>

> I started LDN and it is helping The Gastro situation but it's

> challenging in other ways. So, I am unsure of how to answer your

> question in the sense that I don't even know if I am a Lymie- With

> that said perhaps LDN being the issues to the surface might make it

> easier to treat?

>

> Jodi

> Crohn's/Colitis

>

[Guest guest]

" By the way, for alot of you that have " MS " and are put into remission

with LDN, this particular Lyme scenario is a likely explanation

(something like 66% of " MS " patients test positive for Lyme, with the

poor insensitive testing currently available) "

, Could you please tell us where you get this 66% figure from?

Thanks.

Art

--

>

> The same happened to me. LDN produced an intense exacerbation of

Lyme

> symptoms and several new ones began. It was the main reason I was

> diagnosed with Lyme, otherwise I might have gone through life just

> vaguely ill, thinking I had chronic fatigue and ADD.

>

> The thing that is important to understand about Lyme is that the

> bacteria themselves can be really low key for long periods of time.

> They are parasites that need a living host, and it isn't in their

> interest to attract attention from the immune system or to kill you.

> They invade the tissues that are difficult for the immune system to

> reach, joints, the brain, around the heart. They are munching on

> collagen and causing things to deteriorate in other ways, but they

do

> not usually multiply in massive numbers. If you are young and

> otherwise healthy, you may be able to replace collagen in your

joints

> at the same rate as they eat it. You might have no joint swelling

or

> aching at all, for years. In the brain, you can go your entire life

> with the Lyme spirochetes up there and not feel their impact until

you

> are diagnosed with Alzheimer's.

>

> When you have Lyme and you take LDN, its like equipping your immune

> system with infrared nightvision bincoulars. It becomes aware of

> infection that it previously ignored and attacks aggressively. The

> majority of Lyme symptoms are a result of inflammation produced by

> your immune system's attack on the bacteria. So it is no surprise

> that Lyme symptoms flare on LDN.

>

> If you have small numbers of the spirochetes present, and your

immune

> system has not been seriously damaged or affected by Lyme (this can

be

> quantified with CD-57 Natural Killer cell counts and white blood

> count), you might be able to beat them down with LDN alone. Maybe

> your symptoms will flare for a period of time as war ensues, and

then

> as the spirochetes dwindle in number, the immune response diminishes

> and you feel better than ever. You'd want to stay on LDN

indefinitely

> because Lyme is virtually impossible to fully eradicate from the

body.

> By the way, for alot of you that have " MS " and are put into

remission

> with LDN, this particular Lyme scenario is a likely explanation

> (something like 66% of " MS " patients test positive for Lyme, with

the

> poor insensitive testing currently available)

>

> If you have large numbers of spirochetes present, and your immune

> system has been affected (my CD57=36, WBC=3.5), LDN may produce an

> intolerably severe flare as it did with my mother and I (both of us

> have Lyme, undiagnosed for 20+ years). Because some of my Lyme

> symptoms are heart related, including palpitations, MVP, chest pain,

> the flare LDN produced with regard to those symptoms felt downright

> life-threatening. I thought for sure I was having a heart attack a

> couple times, with pressure in my chest, pain radiating to shoulder

> and jaw, and other classic heart attack symptoms.

>

> I want desperately to take LDN because I am so impressed with its

> ability to boost the immune system in a powerful way. However, I

have

> resigned myself to bringing the numbers of bacteria down to a

> reasonable level first with antibiotics, before I attempt to

introduce

> LDN again. I'm taking things like tetracycline, biaxin, ceftin, and

> my symptoms are definitely improving (including MS-like symptoms of

> muscle stiffness and weakness). When I feel I have made some more

> progress I will CAUTIOUSLY try LDN again at a low dose and try to

> endure it and ramp it up slowly. I think it will be key in

> maintaining any remission or progress that the antibiotics provide.

>

> So Jodi, in summary I think you should consider getting effective

> antibiotic treatment for Lyme by an LLMD.

>

> -

[Guest guest]

Nice review on Lyme.

I was diagnosed twice with MS. Each diagnosis had MRIs and many blood

tests. Took Rebif and then Copaxone, each which made me worse. I then

took LDN for a year. I was still losing strength, felt the LDN was

doing nothing for whatever sickness I had and quit the LDN. Even if

it did nothing, it was better than my time on Rebif. Then did

intravenous EAP. My right hand quit working in Aug 07.

then I studied at the library and felt my disease might be Lyme

disease. In March I was clinically diagnosed with Lyme by a Lyme

Literate Medical Doctor (LLMD) and started antibiotics.

My IgeneX and Fry Laboratories Lyme tests are not conclusive. NONE of

the Lyme tests are accurate. I question the source of the 66% number

of MS patients testing positive for Lyme. If the tests were accurate,

many more of us would be diagnosed with Lyme.

>

> " By the way, for alot of you that have " MS " and are put into remission

> with LDN, this particular Lyme scenario is a likely explanation

> (something like 66% of " MS " patients test positive for Lyme, with the

> poor insensitive testing currently available) "

>

> , Could you please tell us where you get this 66% figure from?

>

> Thanks.

>

> Art

> --

>

>

>

[Guest guest]

The 66% figure was actually my doctor's estimate. The only published

and peer-reviewed statistic I could find quickly comes from this 2005

study, where 26.2% of MS patients had Lyme antibodies in their spinal

fluid.

Acta Neurol Scand. 2005 Aug;112(2):97-102.Click here to read Links

Relevance of immunological variables in neuroborreliosis and

multiple sclerosis.

Bednárová J, Stourac P, Adam P.

Department of Clinical Microbiology, Faculty Hospital, Masaryk

University, Brno, Czech Republic.

OBJECTIVES: The aims were to investigate the frequency of

intrathecal synthesis of specific antibodies against measles (M),

rubella ® and varicella zoster (Z) viruses (MRZ reaction) as a

diagnostic marker between multiple sclerosis (MS) and neuroborreliosis

(NB) groups and to postulate the most typical cerebrospinal fluid

(CSF) variables profile of these entities. METHODS: Three cohorts of

patients were investigated: MS (n = 42), NB (n = 27) and other

neurological diseases (OND) (n = 15). Measles, rubella, varicella

zoster and borrelia-specific IgG antibodies were measured by ELISA,

Q(alb) (CSF/serum albumin ratio) as a marker of blood-CSF barrier

function and specific antibody indices (AI) were calculated according

to relevant formulae. IgG oligoclonal bands (OB) were detected by

isoelectric focusing and immunoenzymatic staining. RESULTS:

Eighty-eight percent of MS patients had positive MRZ reaction and

26.2% had positive anti-borrelia AI. Eighty-nine percent of NB

patients had positive anti-borrelia AI and two patients had

individually anti-measles and rubella positive AI. MS-CSF variables

profile included the presence of IgG OB in 81%, elevated Q(alb) in 31%

and normal cell count in 66.7%. Of NB patients IgG OB were positive in

74%, elevated Q(alb) in 81.5% and normal cell count in 7.4%.

CONCLUSION: MRZ reaction was proved as statistically significant

marker in differential diagnosis between MS and NB. Typical CSF

variables profile of these two entities is highly supportive,

especially when MRZ is included.

> >

> > The same happened to me. LDN produced an intense exacerbation of

> Lyme

> > symptoms and several new ones began. It was the main reason I was

> > diagnosed with Lyme, otherwise I might have gone through life just

> > vaguely ill, thinking I had chronic fatigue and ADD.

> >

> > The thing that is important to understand about Lyme is that the

> > bacteria themselves can be really low key for long periods of time.

> > They are parasites that need a living host, and it isn't in their

> > interest to attract attention from the immune system or to kill you.

> > They invade the tissues that are difficult for the immune system to

> > reach, joints, the brain, around the heart. They are munching on

> > collagen and causing things to deteriorate in other ways, but they

> do

> > not usually multiply in massive numbers. If you are young and

> > otherwise healthy, you may be able to replace collagen in your

> joints

> > at the same rate as they eat it. You might have no joint swelling

> or

> > aching at all, for years. In the brain, you can go your entire life

> > with the Lyme spirochetes up there and not feel their impact until

> you

> > are diagnosed with Alzheimer's.

> >

> > When you have Lyme and you take LDN, its like equipping your immune

> > system with infrared nightvision bincoulars. It becomes aware of

> > infection that it previously ignored and attacks aggressively. The

> > majority of Lyme symptoms are a result of inflammation produced by

> > your immune system's attack on the bacteria. So it is no surprise

> > that Lyme symptoms flare on LDN.

> >

> > If you have small numbers of the spirochetes present, and your

> immune

> > system has not been seriously damaged or affected by Lyme (this can

> be

> > quantified with CD-57 Natural Killer cell counts and white blood

> > count), you might be able to beat them down with LDN alone. Maybe

> > your symptoms will flare for a period of time as war ensues, and

> then

> > as the spirochetes dwindle in number, the immune response diminishes

> > and you feel better than ever. You'd want to stay on LDN

> indefinitely

> > because Lyme is virtually impossible to fully eradicate from the

> body.

> > By the way, for alot of you that have " MS " and are put into

> remission

> > with LDN, this particular Lyme scenario is a likely explanation

> > (something like 66% of " MS " patients test positive for Lyme, with

> the

> > poor insensitive testing currently available)

> >

> > If you have large numbers of spirochetes present, and your immune

> > system has been affected (my CD57=36, WBC=3.5), LDN may produce an

> > intolerably severe flare as it did with my mother and I (both of us

> > have Lyme, undiagnosed for 20+ years). Because some of my Lyme

> > symptoms are heart related, including palpitations, MVP, chest pain,

> > the flare LDN produced with regard to those symptoms felt downright

> > life-threatening. I thought for sure I was having a heart attack a

> > couple times, with pressure in my chest, pain radiating to shoulder

> > and jaw, and other classic heart attack symptoms.

> >

> > I want desperately to take LDN because I am so impressed with its

> > ability to boost the immune system in a powerful way. However, I

> have

> > resigned myself to bringing the numbers of bacteria down to a

> > reasonable level first with antibiotics, before I attempt to

> introduce

> > LDN again. I'm taking things like tetracycline, biaxin, ceftin, and

> > my symptoms are definitely improving (including MS-like symptoms of

> > muscle stiffness and weakness). When I feel I have made some more

> > progress I will CAUTIOUSLY try LDN again at a low dose and try to

> > endure it and ramp it up slowly. I think it will be key in

> > maintaining any remission or progress that the antibiotics provide.

> >

> > So Jodi, in summary I think you should consider getting effective

> > antibiotic treatment for Lyme by an LLMD.

> >

> > -

>

[Guest guest]

-When my private GP. tested and found Lyme Disease in my blood,

He then went on to test all his patients in his CFS clinic,he found

86% were positive for Lyme,that is now 3yrs ago.

Cy...

-- In low dose naltrexone , " shawnbald " <funkodyssey@...>

wrote:

>

> The 66% figure was actually my doctor's estimate. The only published

> and peer-reviewed statistic I could find quickly comes from this 2005

> study, where 26.2% of MS patients had Lyme antibodies in their spinal

> fluid.

>

>

> Acta Neurol Scand. 2005 Aug;112(2):97-102.Click here to read Links

> Relevance of immunological variables in neuroborreliosis and

> multiple sclerosis.

> Bednárová J, Stourac P, Adam P.

>

> Department of Clinical Microbiology, Faculty Hospital, Masaryk

> University, Brno, Czech Republic.

>

> OBJECTIVES: The aims were to investigate the frequency of

> intrathecal synthesis of specific antibodies against measles (M),

> rubella ® and varicella zoster (Z) viruses (MRZ reaction) as a

> diagnostic marker between multiple sclerosis (MS) and neuroborreliosis

> (NB) groups and to postulate the most typical cerebrospinal fluid

> (CSF) variables profile of these entities. METHODS: Three cohorts of

> patients were investigated: MS (n = 42), NB (n = 27) and other

> neurological diseases (OND) (n = 15). Measles, rubella, varicella

> zoster and borrelia-specific IgG antibodies were measured by ELISA,

> Q(alb) (CSF/serum albumin ratio) as a marker of blood-CSF barrier

> function and specific antibody indices (AI) were calculated according

> to relevant formulae. IgG oligoclonal bands (OB) were detected by

> isoelectric focusing and immunoenzymatic staining. RESULTS:

> Eighty-eight percent of MS patients had positive MRZ reaction and

> 26.2% had positive anti-borrelia AI. Eighty-nine percent of NB

> patients had positive anti-borrelia AI and two patients had

> individually anti-measles and rubella positive AI. MS-CSF variables

> profile included the presence of IgG OB in 81%, elevated Q(alb) in 31%

> and normal cell count in 66.7%. Of NB patients IgG OB were positive in

> 74%, elevated Q(alb) in 81.5% and normal cell count in 7.4%.

> CONCLUSION: MRZ reaction was proved as statistically significant

> marker in differential diagnosis between MS and NB. Typical CSF

> variables profile of these two entities is highly supportive,

> especially when MRZ is included.

>

>

>

>

> > >

> > > The same happened to me. LDN produced an intense exacerbation of

> > Lyme

> > > symptoms and several new ones began. It was the main reason I was

> > > diagnosed with Lyme, otherwise I might have gone through life just

> > > vaguely ill, thinking I had chronic fatigue and ADD.

> > >

> > > The thing that is important to understand about Lyme is that the

> > > bacteria themselves can be really low key for long periods of time.

> > > They are parasites that need a living host, and it isn't in their

> > > interest to attract attention from the immune system or to kill you.

> > > They invade the tissues that are difficult for the immune system to

> > > reach, joints, the brain, around the heart. They are munching on

> > > collagen and causing things to deteriorate in other ways, but they

> > do

> > > not usually multiply in massive numbers. If you are young and

> > > otherwise healthy, you may be able to replace collagen in your

> > joints

> > > at the same rate as they eat it. You might have no joint swelling

> > or

> > > aching at all, for years. In the brain, you can go your entire life

> > > with the Lyme spirochetes up there and not feel their impact until

> > you

> > > are diagnosed with Alzheimer's.

> > >

> > > When you have Lyme and you take LDN, its like equipping your immune

> > > system with infrared nightvision bincoulars. It becomes aware of

> > > infection that it previously ignored and attacks aggressively. The

> > > majority of Lyme symptoms are a result of inflammation produced by

> > > your immune system's attack on the bacteria. So it is no surprise

> > > that Lyme symptoms flare on LDN.

> > >

> > > If you have small numbers of the spirochetes present, and your

> > immune

> > > system has not been seriously damaged or affected by Lyme (this can

> > be

> > > quantified with CD-57 Natural Killer cell counts and white blood

> > > count), you might be able to beat them down with LDN alone. Maybe

> > > your symptoms will flare for a period of time as war ensues, and

> > then

> > > as the spirochetes dwindle in number, the immune response diminishes

> > > and you feel better than ever. You'd want to stay on LDN

> > indefinitely

> > > because Lyme is virtually impossible to fully eradicate from the

> > body.

> > > By the way, for alot of you that have " MS " and are put into

> > remission

> > > with LDN, this particular Lyme scenario is a likely explanation

> > > (something like 66% of " MS " patients test positive for Lyme, with

> > the

> > > poor insensitive testing currently available)

> > >

> > > If you have large numbers of spirochetes present, and your immune

> > > system has been affected (my CD57=36, WBC=3.5), LDN may produce an

> > > intolerably severe flare as it did with my mother and I (both of us

> > > have Lyme, undiagnosed for 20+ years). Because some of my Lyme

> > > symptoms are heart related, including palpitations, MVP, chest pain,

> > > the flare LDN produced with regard to those symptoms felt downright

> > > life-threatening. I thought for sure I was having a heart attack a

> > > couple times, with pressure in my chest, pain radiating to shoulder

> > > and jaw, and other classic heart attack symptoms.

> > >

> > > I want desperately to take LDN because I am so impressed with its

> > > ability to boost the immune system in a powerful way. However, I

> > have

> > > resigned myself to bringing the numbers of bacteria down to a

> > > reasonable level first with antibiotics, before I attempt to

> > introduce

> > > LDN again. I'm taking things like tetracycline, biaxin, ceftin, and

> > > my symptoms are definitely improving (including MS-like symptoms of

> > > muscle stiffness and weakness). When I feel I have made some more

> > > progress I will CAUTIOUSLY try LDN again at a low dose and try to

> > > endure it and ramp it up slowly. I think it will be key in

> > > maintaining any remission or progress that the antibiotics provide.

> > >

> > > So Jodi, in summary I think you should consider getting effective

> > > antibiotic treatment for Lyme by an LLMD.

> > >

> > > -

> >

>

[Guest guest]

How are you doing now that you've started the antibiotic therapy?

In March I was clinically diagnosed with Lyme by a Lyme

> Literate Medical Doctor (LLMD) and started antibiotics.

>

[Guest guest]

In response to 's message 73692:

By March 2008 my health and strength had really gotten quite poor. My

right leg just is a prop to let me stand upright. My washer and dryer

are in the basement :-( I have to climb the steps one at a time. My

right hand had completely quit working and sometimes on it's own would

curl up into a fist.

In Dec 07 I selected / hired my LLMD. My first appt was March 08. My

first batch of antibiotics was 100mg doxycycline twice per day.

Initially I had obvious improvements in strength. These improvements

were climbing the steps like a normal person does and getting into my

car like a normal person.

Then,.......I appreciated what a herxheimer reaction was. I felt like

I'd been run over by a Mack truck! I telephoned the LLMD who said

this was confirmation of the Lyme / multiple coinfection diagnosis.

That was good news,....I think.

Finally at about month eight (8) I starting feeling like there was a

light at the end of the tunnel. While really sick I had fallen off

the toilet while trying to stand up. To get around the house I " walk "

with two canes. Outside of the house I use an electric scooter.

The past couple of weeks (months 7.5 and 8) I've been walking short

distances through the house without any canes. The next 3 months will

be 5 different antibiotics interspersed throughout the day.

These days when I read the MS boards it's hard NOT to see Lyme

disease. I joined these boards as an MS patient, have had the MRIs

with contrast, blood tests, have taken the sub-q drugs,etc. I don't

want to be a " reformed smoker " type. Now I just write about my story

of MS to Lyme. If someone chooses to explore that path, I'll provide

a map and compass. To hire a LLMD, find Lyme organizations and

TELEPHONE them. These people have been to the Lyme physicians.

Lyme Symptoms, with a Lyme quiz, upper left hand corner:

www.CanLyme.com

Lyme video, collection of newscasts, about 20min all together:

(snazzy link set up from fellow LDNer. It's a great one click

shopping tool TNX)

http://vimeo.com/2354218

Lyme disease documentary, " Under Our Skin " trailer:

http://www.youtube.com/watch?v=sxWgS0XLVqw &

>

> How are you doing now that you've started the antibiotic therapy?

>

>

> In March I was clinically diagnosed with Lyme by a Lyme

> > Literate Medical Doctor (LLMD) and started antibiotics.

> >

>

[Guest guest]

From the first paragraph at:

http://www.columbia-lyme.org/patients/ld_spinal_fluid.html

" If the CSF is being examined as part of the differential diagnosis

with multiple sclerosis, the neurologist is also likely to order

other tests, such as an assay for oligoclonal bands. Unfortunately,

patients may have neurologic Lyme disease but test negative on the

Lyme index. "

From http://www.ilads.org/files/burrascano_0905.pdf

" Even in meningitis, antibodies are detected in the CSF in less than

13% of patients with late disease! "

I'm just throwing these out there because I have heard that something

like only 25% of people with Lyme will test + for it in the CSF. But

from reading this article:

http://www.neurology.org/cgi/content/abstract/42/1/32

it sounds like if you run PCR on the spinal fluid (vs. antibody test,

IgG/IgM), your chances of testing + are greater, if you've got Lyme.

Sue

> -- In low dose naltrexone , " shawnbald " <funkodyssey@>

> wrote:

> >

> > The 66% figure was actually my doctor's estimate. The only

published

> > and peer-reviewed statistic I could find quickly comes from this

2005

> > study, where 26.2% of MS patients had Lyme antibodies in their

spinal

> > fluid.

> >

> >

> > Acta Neurol Scand. 2005 Aug;112(2):97-102.Click here to read Links

> > Relevance of immunological variables in neuroborreliosis and

> > multiple sclerosis.

> > Bednárová J, Stourac P, Adam P.

> >

> > Department of Clinical Microbiology, Faculty Hospital, Masaryk

> > University, Brno, Czech Republic.

> >

> > OBJECTIVES: The aims were to investigate the frequency of

> > intrathecal synthesis of specific antibodies against measles (M),

> > rubella ® and varicella zoster (Z) viruses (MRZ reaction) as a

> > diagnostic marker between multiple sclerosis (MS) and

neuroborreliosis

> > (NB) groups and to postulate the most typical cerebrospinal fluid

> > (CSF) variables profile of these entities. METHODS: Three cohorts

of

> > patients were investigated: MS (n = 42), NB (n = 27) and other

> > neurological diseases (OND) (n = 15). Measles, rubella, varicella

> > zoster and borrelia-specific IgG antibodies were measured by

ELISA,

> > Q(alb) (CSF/serum albumin ratio) as a marker of blood-CSF barrier

> > function and specific antibody indices (AI) were calculated

according

> > to relevant formulae. IgG oligoclonal bands (OB) were detected by

> > isoelectric focusing and immunoenzymatic staining. RESULTS:

> > Eighty-eight percent of MS patients had positive MRZ reaction and

> > 26.2% had positive anti-borrelia AI. Eighty-nine percent of NB

> > patients had positive anti-borrelia AI and two patients had

> > individually anti-measles and rubella positive AI. MS-CSF

variables

> > profile included the presence of IgG OB in 81%, elevated Q(alb)

in 31%

> > and normal cell count in 66.7%. Of NB patients IgG OB were

positive in

> > 74%, elevated Q(alb) in 81.5% and normal cell count in 7.4%.

> > CONCLUSION: MRZ reaction was proved as statistically significant

> > marker in differential diagnosis between MS and NB. Typical CSF

> > variables profile of these two entities is highly supportive,

> > especially when MRZ is included.