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I had gradual onset, no fluey problems, no infections just alot of fatigue and

cognitive and muscle problems. I dont have a clue about why gradual onset

occurs.

tvpro36 <tvpro36@...> wrote: Is there anyone else on here who had gradual

onset? And/or any

thoughts on which theories make the most sense with gradual onset?

Thanks,

Trina ;)

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

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> Several bacterial taxa can live and replicate in hostile host cells

> like phagocytes but do not appear to be causes of chronic disease;

> legionellae for example. I would guess that these lack the capacity

> to refract programmed cell death, whether cell-autonomous or

> lymphocyte mediated. Other bacteria probably can refract this

> capacity. Chlamydiae can.

I just remembered, so can at least some rickettsiae.

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In a message dated 2/22/2006 11:06:33 AM Eastern Standard Time,

sllc53@... writes:

Joy, what are Dr Endlander's views as to where the neurotixin is

coming from? Does he think it is due to an infective agent in us or

what ?

Is the ciguatera epitope found in lyme patients?

Thanks in advance,

BW,

Sheila

The ciguera testing did not include Lyme's patients but it is an interesting

idea. Dr Hokama has been given a grant from NIH and Gail Kansky for another

research project . Maybe you should write to him in Hawaii

Enlander MD

Enlander , M.D., M.R.C.S., L.R.C.P. (Lon.)

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You might want to ask this question re MS on the low dose naltrexone list.

mjh

In a message dated 2/22/06 1:44:40 P.M. Eastern Standard Time,

jenbooks13@... writes:

Here is some info from lymenet today, once again in favor of bacterial

infection (rather than viral) in, in this case, borrelia and its

granules found in autopsies of M.S. patients, from the 1950's...nice

how they never followed up on this:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=041500

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I had the never-ending-flu at the beginning,but I did not have neurological

problems until about 10 years later and I worked perfectly productive till

that time though I was exhausted after the work or during weekends and spent

those times for recovery.If onset with infection means rapid onset than I am

in that group but I also see some people who go bed ridden right after

onset. That seems even more rapid than my case. So,I wish to learn more

about this.

Nil

Re: gradual onset

>I dont know if anyone has really characterized the symptomology of gradual

>onset. It seems though that the symptomology of rapid onset usually

>suggests an infection (aching muscles, fluey problems, etc.) that patients

>just dont seem to recover from. I suppose the same thing could be true in

>gradual depending on who you are. I dont think my symptoms are

>characteristic

> of gradual.

>

> Cort

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I originally thought I had sudden onset CFS as I became suddenly very ill

following an acute case of flu and progressively worsened over the years.

However since I have been diagnosed with Lyme it has occured to me that some of

the symptoms I experienced before the flu such as labyrinthitis and vertigo and

frequent infections were indications that the lyme infection was gradually

building up in my body. I believe that the flu was the insult that pushed me

over into becoming full-blown CFS/Lyme but that the infection that caused the

CFS was gradually worsening before the main illness set in

Re: gradual onset

>I dont know if anyone has really characterized the symptomology of gradual

>onset. It seems though that the symptomology of rapid onset usually

>suggests an infection (aching muscles, fluey problems, etc.) that patients

>just dont seem to recover from. I suppose the same thing could be true in

>gradual depending on who you are. I dont think my symptoms are

>characteristic

> of gradual.

>

> Cort

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

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Joy, what are Dr Endlander's views as to where the neurotixin is

coming from? Does he think it is due to an infective agent in us or

what ?

Is the ciguatera epitope found in lyme patients?

Thanks in advance,

BW,

Sheila

>

>

> In a message dated 2/21/2006 8:28:59 P.M. Pacific Standard Time,

> orchidwish@... writes:

>

> Yes, I did. I'm interested to see what the theories are. Cardiac

> seems one that might be likely. Also the ciguatera toxin which is

> evidently produced inside the body rather than taken in from

externally.

>

>

>

>

> Ever since the paper that Dr Hokama wrote with Dr Enlander, we are

bombarded

> with questions relating to the exotic Ciguera fish toxin. We

collected the

> specimens in New York, Dr Hokama tested them in Hawaii

> This toxin was used as an example of a neurotoxin, with part of the

toxin as

> an epitope. The patients sampled by Dr Enlander in New York did not

come in

> contact with the whole exotic fish toxin, but a toxin with neurotoxic

> properties similar to ciguera

>

> Joy

> Research assistant to Dr Enlander

> _www.enlander.com_ (http://www.enlander.com/)

>

>

>

>

>

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There was talk on a lyme list I was a member of once of clubbing together to pay

for a lyme patient to take the cigautera test but sadly it never materialised.

My hunch is that the ciguatoxin is caused by lyme or one of its co-infections as

so many CFSers are now being diagnosed lyme

Re: Re: gradual onset

In a message dated 2/22/2006 11:06:33 AM Eastern Standard Time,

sllc53@... writes:

Joy, what are Dr Endlander's views as to where the neurotixin is

coming from? Does he think it is due to an infective agent in us or

what ?

Is the ciguatera epitope found in lyme patients?

Thanks in advance,

BW,

Sheila

The ciguera testing did not include Lyme's patients but it is an interesting

idea. Dr Hokama has been given a grant from NIH and Gail Kansky for another

research project . Maybe you should write to him in Hawaii

Enlander MD

Enlander , M.D., M.R.C.S., L.R.C.P. (Lon.)

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DEnlander@... wrote:

> The ciguera testing did not include Lyme's patients but it is an

interesting idea. Dr Hokama has been given a grant from NIH and Gail

Kansky for another research project . Maybe you should write to him in

Hawaii

>

> Enlander MD

Dr Enlander, you might consider asking Gail Kansky about her

encounter with Stachybotrys.

I am aware that her desription of the experience sounds incidental to

CFS as she discounts it herself.

My experience says it is no coincidence.

-

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I wonder if its babesia simply because thats an apicoplast, i.e. an

organelle evolved from cyanobacteria,w hich are related to

dinoflagellates.

Here is some info from lymenet today, once again in favor of bacterial

infection (rather than viral) in, in this case, borrelia and its

granules found in autopsies of M.S. patients, from the 1950's...nice

how they never followed up on this:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=041500

> >

> >

> > In a message dated 2/21/2006 8:28:59 P.M. Pacific Standard Time,

> > orchidwish@ writes:

> >

> > Yes, I did. I'm interested to see what the theories are. Cardiac

> > seems one that might be likely. Also the ciguatera toxin which is

> > evidently produced inside the body rather than taken in from

> externally.

> >

> >

> >

> >

> > Ever since the paper that Dr Hokama wrote with Dr Enlander, we are

> bombarded

> > with questions relating to the exotic Ciguera fish toxin. We

> collected the

> > specimens in New York, Dr Hokama tested them in Hawaii

> > This toxin was used as an example of a neurotoxin, with part of the

> toxin as

> > an epitope. The patients sampled by Dr Enlander in New York did not

> come in

> > contact with the whole exotic fish toxin, but a toxin with

neurotoxic

> > properties similar to ciguera

> >

> > Joy

> > Research assistant to Dr Enlander

> > _www.enlander.com_ (http://www.enlander.com/)

> >

> >

> >

> >

> >

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What were the first symptoms that appeared and the order of other

symptoms as they appeared? This will probably give you a clue as to

the originating factors. For example: Did you first experience

symptoms of poor digestion such as heartburn or H.Pylori? Or did

those symptoms appear later (assume they did)?

All the best,

Jim

>

> Yes, I did. I'm interested to see what the theories are. Cardiac

> seems one that might be likely. Also the ciguatera toxin which is

> evidently produced inside the body rather than taken in from

externally.

>

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