Re: CFS or Lyme?

[Guest guest]

Any immune system cannot handle a good dose of Lyme.

Any immune system can handle very small doses of Lyme

(and does so without a person knowing it).

I have always had a very stong and quick to react

immune system. I was born that way. When sick with

Lyme, it is a wreck. Do not blame your immune system.

It is outmatched. Once the Lyme is irradicated, your

system will recover...fully. Don't believe anyone

trying to rationalize that it isn't " just Lyme " ...it

is Lyme. You can come down with all kinds of other

things while fighting Lyme JUST like Chemotherapy

patients, JUST like HIV patients...pretty normal

stuff. What amazes me, is that doctors cannot figure

these simple things out for themselves....they are the

PROFESSIONALS....right?

-Jeff L.

--- copeland.cole@... wrote:

> If you will notice the link you provided is an

> " abriged "

> vesion of the CFS definition. The full-length

> version

> does outline the NK cell deficiency, along with

> ratios

> of CD4 to CD8 along with others ( not going to look

> it

> up) that contribute to an accurate definition. My

> doctor uses those tests and I have always tested

> right

> along the CDC test lines.

>

> My NK cell count has risen at times along with

> better

> ratios of the CD4/CD8 and the others, but never

> close to

> what would be considered normal. This improved

> results

> were usually when I was on IV and the infection was

> knocked back and I was feeling better.

>

> Again, it makes sense to me (and my doctor) that my

> immune system would improve if the infection is

> lessened. However, as I stated before, the killing

> of

> the infections does not mean the immune system is

> going

> to kick back into gear. I do believe that if the

> infection is knocked back, your immune system has a

> *chance* to improve and recover ( as my test results

>

> would indicate. I don't think it will ever recover

> if I

> don't keep trying to kill the Lyme.

>

> You have your viewpoint and I have mine. I still

> say

> everything is not Lyme and one should always look at

>

> other possibilities and treat all symptoms

> regardless.

>

> >

> > > Well, I don't they are the same at all. Does

> everyone

> > > that has Lyme Disease have a dysfunctional

> immune

> > > system? I doubt it seriously. And that is one

> of the

> > > CDC criteria for CFS/CFIDS.

> >

> > No it is NOT one of the criteria for CFS. See:

> >

>

http://www.cdc.gov/ncidod/diseases/cfs/defined/defined2.htm.

>

> > Specifically these parts:

> >

>

> ------------------------------------------------

> Get the award winning ISP, AT & T WorldNet Service

> http://download.att.net/webtag

>

__________________________________________________

[Guest guest]

In a message dated 05.04.02 12:34:58 US Eastern Standard Time,

jeffl22@... writes:

> It is true for me as well that the more terrible I

> feel from meds, the more they are working against the

> Lyme. Again, I found that over a gram of Doxy a day

> rocks my stomach, rocks my skin, I loose weight fast

> (can't eat if I'm about ready to puke 24 hours a

> day)...and rocks Lyme. If you aren't feeling

> terrible, neither is the Lyme. For me, it BARELY

> worked...but it did.

Yup. For me it was absolutely a non-possible because I'm diabetic. I have to

eat on a schedule daily. If I don't eat at a certain time, if I have to fast

for whatever reason, I start to go into hypoglycaemic shock. Uh.. not good.

Since I physically did vomit about every hour on the hour, which actually

makes your sugar go lower... my doctors quickly decided that Doxy wasn't the

best choice for me.

Liisaveta.

----------------------------------

Lieber ein Ende mit Schrecken als ein Schrecken ohne Ende.

Better a torturous end than torture without end.

Ferdinand von Schill

So he wasn't Goethe.

At least people who don't speak German can almost say his name correctly.

[Guest guest]

Oh, I've done my share of puking and lost more weight

than I ever have in my whole life...not good, I'm

skinny already!

Speaking of skinny...I'm wondering if there aren't

specific body types more prone to Chronic

Lyme...anyone out there want to say? For example, I'm

6'3 " and 160 lbs...very thin and wired for sound. I

have a high motabolizm and don't like to sit still.

Please respond with your body type!..everyone.

I've found Zithromax to be very effective with far

less side effects. However, since my insurance

company won't pay for high doses (yea, they are evil

and have scewed my life over), I cannot afford it out

of pocket like I can Doxy. If you have the bucks, try

1,000 - 1,200 mgs of Zith a day. For me, it would

take 2,500mgs a day...big bucks! You will get diarea

and severe gut cramping when it is working well

against the Lyme...again, small price to pay.

-Jeff L.

--- ilseaurora@... wrote:

> In a message dated 05.04.02 12:34:58 US Eastern

> Standard Time,

> jeffl22@... writes:

>

>

> > It is true for me as well that the more terrible I

> > feel from meds, the more they are working against

> the

> > Lyme. Again, I found that over a gram of Doxy a

> day

> > rocks my stomach, rocks my skin, I loose weight

> fast

> > (can't eat if I'm about ready to puke 24 hours a

> > day)...and rocks Lyme. If you aren't feeling

> > terrible, neither is the Lyme. For me, it BARELY

> > worked...but it did.

>

> Yup. For me it was absolutely a non-possible because

> I'm diabetic. I have to

> eat on a schedule daily. If I don't eat at a certain

> time, if I have to fast

> for whatever reason, I start to go into

> hypoglycaemic shock. Uh.. not good.

> Since I physically did vomit about every hour on the

> hour, which actually

> makes your sugar go lower... my doctors quickly

> decided that Doxy wasn't the

> best choice for me.

>

> Liisaveta.

> ----------------------------------

> Lieber ein Ende mit Schrecken als ein Schrecken ohne

> Ende.

> Better a torturous end than torture without end.

> Ferdinand von Schill

>

> So he wasn't Goethe.

> At least people who don't speak German can almost

> say his name correctly.

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

__________________________________________________

[Guest guest]

See? The fact that you are hyperglycemic tells me all

I need to know about your body type...or I can guess

anyway? Are you overweight? Underweight, just right?

High metabolism? Low?

-Jeff L.

--- ilseaurora@... wrote:

> In a message dated 05.04.02 12:34:58 US Eastern

> Standard Time,

> jeffl22@... writes:

>

>

> > It is true for me as well that the more terrible I

> > feel from meds, the more they are working against

> the

> > Lyme. Again, I found that over a gram of Doxy a

> day

> > rocks my stomach, rocks my skin, I loose weight

> fast

> > (can't eat if I'm about ready to puke 24 hours a

> > day)...and rocks Lyme. If you aren't feeling

> > terrible, neither is the Lyme. For me, it BARELY

> > worked...but it did.

>

> Yup. For me it was absolutely a non-possible because

> I'm diabetic. I have to

> eat on a schedule daily. If I don't eat at a certain

> time, if I have to fast

> for whatever reason, I start to go into

> hypoglycaemic shock. Uh.. not good.

> Since I physically did vomit about every hour on the

> hour, which actually

> makes your sugar go lower... my doctors quickly

> decided that Doxy wasn't the

> best choice for me.

>

> Liisaveta.

> ----------------------------------

> Lieber ein Ende mit Schrecken als ein Schrecken ohne

> Ende.

> Better a torturous end than torture without end.

> Ferdinand von Schill

>

> So he wasn't Goethe.

> At least people who don't speak German can almost

> say his name correctly.

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

__________________________________________________

[Guest guest]

" Rodney & " wrote:

> You betcha!! What angered me was the fact that he is a leader in

the CFS

> community. How many people has he talked out of their Lyme

diagnosis? I

> tempered the tone by stating that I hope they had changed their

mind about

> the symptoms that Lyme can cause.

He claimed to lead a CFS support group: that doesn't make him a

leader in the CFS Community. Especially not in Seattle, where a LOT

of research is done on CFS, and UofW maintains a Chronic Fatigue

clinic.

CFS certainly is a real disorder in its own right, one as yet not as

well understood, though vast strides have been made in the last

several years. As some others have mentioned, one of the triggers

for some people may indeed be Lyme. But not in all: the etiology is

much more complex than that.

As for recovering from Lyme, it is important to remember that

treatment is one thing. Recovery is another. My six-to-12 months

(or whatever it takes) is, I hope, going to rid my body and brain of

the Lyme Organism. Then I get to find out how much function I will

be able to recover. It's possible that I may have permanent damage

to deal with. That, however is not the same thing as CFS, which

involves a disordering of the immune and endocrine systems.

As I mentioned in my original response to " Ed " , I personally do not

appear to have CFS, though I know several people whose CFS appears to

hve been triggered by Lyme (some are on this board). I have

responded remarkably well in a short time to treatment for Lyme, and

my immune system seems to a part of that response. That does not

suggest CFS, but only time will tell. The thing is-- many people

have CFS who have never had Lyme, but whose disease was triggered by

other factors.

My response was worded strongly, because I feel that not only did

Ed's message indicate that he is misinformed about Lyme, he is flat

out *uninformed* about the disease he claims to have. I find this

astonishing, given the fact that Seattle sponsors the annual CFS

research symposium, and there is no shortage of information about CFS

in the CFS community at large. I know because I was heavily involved

in that community for many years.

My apologies for any offense that brought. But it was, and remains,

important, to understand that neither CFS nor Lyme is a checklist of

half a dozen symptoms that are found in almost every chronic disorder

human beings are subject to. It takes an intelligent physician's

trained and informed evaluation to determine that. And there's the

rub: finding the physician with those qualities who also knows and

understands Lyme Disease. It took me 14 years.

Dayle Ann

[Guest guest]

I agree with the greatest majority of your post.

However, the portion I have listed below I question.

Being that Lyme Disease can cause the entire body to

malfunction due to the infection going untreated, it

stands to reason that CFS/CFIDS could result if

untreated long enough. I believe that is what happened

in my case. I have a dysfunctional immune system and

low body temp, which would also indicate some endocrine

dysfunction. I meet all the CFS/CFIDS criteria.

As you said, the *big* question is whether my immune

system and endocrine system recover when/if Lyme Disease

is eradicated from the body? Or, are we then in the

same boat as those with *just* CFS/CFIDS, with physical

problems that there are no cures or answers for yet?

My CFIDS physician tends to doubt my CFIDS will

disappear even if I eradicate Lyme Disease from my

body. I really don't know. However, I don't think my

immune system has *any* chance of recovery unless Lyme

Disease is killed off.

As I have stated before, I believe I have CFS/CFIDS

which was caused by a long-term Lyme Disease infection

that went untreated.

My six-to-12 months

> (or whatever it takes) is, I hope, going to rid my body and brain of

> the Lyme Organism. Then I get to find out how much function I will

> be able to recover. It's possible that I may have permanent damage

> to deal with. That, however is not the same thing as CFS, which

> involves a disordering of the immune and endocrine systems.

[Guest guest]

This is very possible. My Fibromyalgia and Epstien-Barr were both

triggered by my Lyme. And even if the Lyme does finally go away, the

Fibro won't. And I only went untreated for 3 or 4 months.

Liz

> I agree with the greatest majority of your post.

> However, the portion I have listed below I question.

>

> Being that Lyme Disease can cause the entire body to

> malfunction due to the infection going untreated, it

> stands to reason that CFS/CFIDS could result if

> untreated long enough. I believe that is what happened

> in my case. I have a dysfunctional immune system and

> low body temp, which would also indicate some endocrine

> dysfunction. I meet all the CFS/CFIDS criteria.

>

> As you said, the *big* question is whether my immune

> system and endocrine system recover when/if Lyme Disease

> is eradicated from the body? Or, are we then in the

> same boat as those with *just* CFS/CFIDS, with physical

> problems that there are no cures or answers for yet?

>

> My CFIDS physician tends to doubt my CFIDS will

> disappear even if I eradicate Lyme Disease from my

> body. I really don't know. However, I don't think my

> immune system has *any* chance of recovery unless Lyme

> Disease is killed off.

>

> As I have stated before, I believe I have CFS/CFIDS

> which was caused by a long-term Lyme Disease infection

> that went untreated.

> My six-to-12 months

> > (or whatever it takes) is, I hope, going to rid my body and brain

of

> > the Lyme Organism. Then I get to find out how much function I

will

> > be able to recover. It's possible that I may have permanent

damage

> > to deal with. That, however is not the same thing as CFS, which

> > involves a disordering of the immune and endocrine systems.

[Guest guest]

In a message dated 4/30/2002 1:45:26 PM Eastern Daylight Time,

winddancer44@... writes:

> My Fibromyalgia and Epstien-Barr were both

> triggered by my Lyme. And even if the Lyme does finally go away, the

> Fibro won't. And I only went untreated for 3 or 4 months.

>

> Liz

>

Dear Liz,

When not under treatment, I have very bad fibro.

It affects my skin, bones, and muscles, ... they hurt & burn like fire.

Yet, when I'm treated with strong IV ABX, the fibro is almost totally under

control, and I get my muscular strength back.

Without ABX, I cannot walk up 4 steps without severe pain.

On ABX I can climb several flights of steps slowly, but without any pain at

all.

All the Physical Therapy in the world will not " cure " my fibro, but the ABX

work wonders.

Like all of us, I'm praying for a permanent cure.

Hugs,

a

[Guest guest]

Hey just curious has anyone heard of a supplement called moducare. I heard it

was supposed to be great for fibro and other diseases becasue it lowers cortisol

levels. Any info would be much appreciated. thanks -Val

[Guest guest]

Val : I've tried it but maybe I didn't stay on long enough...I could have

bought a house with all the supplements I have spent money I don't have in

the last many years trying to rebuild this old body. Let us know if it helps

you.

Best wishes and sunshine on your path,

Donna

[Guest guest]

Dear Val,

Had to do some hunting on this one. The Sterols and sterolines are

actually Beta-Sitosterol and Beta-Sitosterol Glucoside. These are

common in vegetables, seeds and nuts. The main action they have is

inhibiting two inflammatory cytokines; Tumor Necrosis Factor and

Interleukin-6. These are two of the cytokines that have been

implicated in the autoimmune aspects of Lyme disease. But it is

tricky because you want to bring the immune system back to balance

and not stop them completely. We need them to fight infections.

Slowing them down does help a lot but just be careful. If you notice

anything unusual just stop immediately. I don't know how expensive it

is. If it costs too much then use Oil of Oregano or Ginger capsules.

They also modulate these cytokines plus interleukin-1 but are also

potent antimicrobials. The benefits with any of them aren't apparent

immediately, it is slow and gradual over at least 30 days time. You

still may not notice a difference until you stop and everything

starts crashing back within a week.

BETA-SITOSTEROL

> Hey just curious has anyone heard of a supplement called moducare.

I heard it was supposed to be great for fibro and other diseases

becasue it lowers cortisol levels. Any info would be much

appreciated. thanks -Val