Re: Greetings from new member

[Guest guest]

It's a miricle then! Who do you think you are kidding ..

-----Original Message-----From: infections [mailto:infections ]On Behalf Of living_pain_freeSent: 07 July 2006 21:48infections Subject: [infections] Greetings from new member

Greeting to all, My name is Sara and I am brand new here. I am so very glad to have found this community. I think the very worst part of this whole experience has been how alone I have felt as I struggled to find answers and solutions.When I was diagnosed with Fibromyalgia, it was like a double edged sword. It was such a relief to finally know WHAT was wrong and that I wasn't just a big whiner cry-baby... but then how to live with it without living a life of constant pain?I also have tendonitis and carpal tunnel in both wrists, sciatica, irritable bowel syndrome, and Chronic Fatigue Syndrome. I was just hurting so bad, I got depressed, so I would eat... and eat.... and eat. I got fatter and fatter, my symptoms kept getting worse, I got more depressed.So, I ate more and more and more. And got fatter and fatter and fatter. The sugar and carbs along with a course of antibiotics and I added systemic candidiasis to my list of problems. I was at the point that I just wanted to give up on life, because I couldbarely make it through the day. When I would finish my computer work for theday, I wasn't of much help to anyone as I was in soooo much pain, and had used every bit of energy I could muster up to get through my work day. I really felt worthless, and was unable to enjoy my free time... and forget about doing housework!At that point, I took a good, hard look at myself. I had always wanted something that would help me really live my life to the fullest and truly make a difference in my little corner of the universe. What was happening to me? My life was passing me by... I was on the verge of just giving up. Life just didn't feel worth living any more.So I decided that I could no longer depend solely on the medicalcommunity to help me. I had to become knowledgeable and take more control of my treatment and eventual recovery! Just the thought of it was empowering!!! :)So I started reading about alternative nutritional therapy and learned about antioxidants.To be very honest with you, initially I thought it was just a bunch of cr*p. But at that point I was such a mess, I figured I had nothing to lose. The product that I found was isotonic (liquid) and had a 90-95% absorption rate rather than the traditional 5-10% with traditional vitamin tablets.The first day that I took OPC, I felt no different and thought... oh well... here we go again BUT... within a week, I was able to get through a fullday of work without feeling like death! Within a month, I was able to do little things to help around the house. Within 3 months I could function like a normal person again!!!!!!!!Now don't get me wrong, I'm not running marathons, or out playing sports, but I can make it through a FULL day of work, housework and still have quality time. I have also just added Glucosatrin and isotonic B12 which really help with my fibro, tendonitis, rotator cuff, sciatica and Chronic Fatigue Syndrome. I stay on a low GI diet and drink Aloe Juice for help with my IBS.If that wasn't enough, my blood sugar and triglycerides are now normal and my blood pressure is down to my usual 110/70. The candida is gone and I've also dropped 20 lbs.. without even trying!I promised myself that if I was ever able to find something that would help me that I would tell everyone that I come in contact with - and give them a chance to live again. And when I think of all the money I spent on doctors, meds and treatment that kept me isolated in my little house of pain, I could just cry! Now I spend about $250 a month on my supplements and don't feel like Ineed to move a cot into my doctor's office.Keep asking questions, get knowledgeable, get to the root, stay persistent and the answers will come! Sorry this is so long, but I really want to help everyone I can learn about this condition and help themselves live a relatively pain-free and full life again.If anyone has any questions, please feel free to contact me at any time. I'd be more than happy to do anything I can to help :)Saraliving_pain_free

[Guest guest]

Jeez, what the heck is YOUR problem? If you found shared something that had helped you, wouldn't you be excited? I would be excited for you and wanting to know all about it... not giving you a hard time. If this is an example of this group, I don't think I'll be sticking around. Sara Jaep <Jaep@...> wrote: It's a miricle then! Who do you think you are kidding .. -----Original Message-----From: infections [mailto:infections ]On Behalf Of living_pain_freeSent: 07 July 2006 21:48infections Subject: [infections] Greetings from new member Greeting to all, My name is Sara and I am brand new here. I am so very glad to have found this community. I think the very worst part of this whole experience has been how alone I have felt as I struggled to find answers and solutions.When I was diagnosed with Fibromyalgia, it was like a double edged sword. It was such a relief to finally know WHAT was wrong and that I wasn't just a big whiner cry-baby... but then how to live with it without living a life of constant pain?I also have tendonitis and carpal tunnel in both wrists, sciatica, irritable bowel syndrome, and Chronic Fatigue Syndrome. I was just hurting so bad, I got depressed, so I would eat... and eat.... and eat. I got fatter and fatter, my symptoms kept getting worse, I got more depressed.So, I ate more and more and more. And got fatter and fatter and fatter. The sugar and carbs along with a course of antibiotics and I added

systemic candidiasis to my list of problems. I was at the point that I just wanted to give up on life, because I couldbarely make it through the day. When I would finish my computer work for theday, I wasn't of much help to anyone as I was in soooo much pain, and had used every bit of energy I could muster up to get through my work day. I really felt worthless, and was unable to enjoy my free time... and forget about doing housework!At that point, I took a good, hard look at myself. I had always wanted something that would help me really live my life to the fullest and truly make a difference in my little corner of the universe. What was happening to me? My life was passing me by... I was on the verge of just giving up. Life just didn't feel worth living any more.So I decided that I could no longer depend solely on the medicalcommunity to help me. I had to become knowledgeable and take more control of

my treatment and eventual recovery! Just the thought of it was empowering!!! :)So I started reading about alternative nutritional therapy and learned about antioxidants.To be very honest with you, initially I thought it was just a bunch of cr*p. But at that point I was such a mess, I figured I had nothing to lose. The product that I found was isotonic (liquid) and had a 90-95% absorption rate rather than the traditional 5-10% with traditional vitamin tablets.The first day that I took OPC, I felt no different and thought... oh well... here we go again BUT... within a week, I was able to get through a fullday of work without feeling like death! Within a month, I was able to do little things to help around the house. Within 3 months I could function like a normal person again!!!!!!!!Now don't get me wrong, I'm not running marathons, or out playing sports, but I can make it through a FULL day

of work, housework and still have quality time. I have also just added Glucosatrin and isotonic B12 which really help with my fibro, tendonitis, rotator cuff, sciatica and Chronic Fatigue Syndrome. I stay on a low GI diet and drink Aloe Juice for help with my IBS.If that wasn't enough, my blood sugar and triglycerides are now normal and my blood pressure is down to my usual 110/70. The candida is gone and I've also dropped 20 lbs.. without even trying!I promised myself that if I was ever able to find something that would help me that I would tell everyone that I come in contact with - and give them a chance to live again. And when I think of all the money I spent on doctors, meds and treatment that kept me isolated in my little house of pain, I could just cry! Now I spend about $250 a month on my supplements and don't feel like Ineed to move a cot into my doctor's office.Keep asking questions, get

knowledgeable, get to the root, stay persistent and the answers will come! Sorry this is so long, but I really want to help everyone I can learn about this condition and help themselves live a relatively pain-free and full life again.If anyone has any questions, please feel free to contact me at any time. I'd be more than happy to do anything I can to help :)Saraliving_pain_free

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Sara,

I don't know what 's problem is, but you should be aware that most

persons with CFS, Fibro, MCS, Lyme, etc., don't get well or even

substantially better by taking a few supplements, which unless I

misunderstand you completely, is the gist of your story. Sometimes

people who have gone far, far beyond what you have done to heal

yourself, only to continue to get worse, are tempted to wonder if

fortunate folk such as yourself live in an alternative universe or are

just playing pranks, or what.

Personally I am coming to the conclusion that one's clinical picture is

not always directly related to the ease with which that picture might be

improved, or how easily the right path might be found, or how

complicated or simple the solution ends up being. I suspect that some

can be profoundly ill based on nothing more than seemingly minor

imbalances in nutrition, and others have more complex puzzles to solve.

One might have a problem with toxins or infection that does not appear

by any objective measure to be a big deal, yet causes untold havoc.

My wife has a 30 year debility that has nearly taken her life, and the

solution so far has been difficult and complicated, and nutritional

intervention of every kind has been tried and discarded, and we're way

beyond that now. So I could only wish that taking some anti-oxidants

for a week could bring about measurable relief. Can you understand how

we might be sorely tempted to view your story with some chagrin, and

maybe even some skepticism?

So ... I would suggest that not jump to conclusions so readily, but

also that Sara might want to raise her awareness of how very lucky

indeed she is. And don't be tempted to assume that what worked for you

is the answer for everyone else. That assumption is human nature, but

usually incorrect.

Best,

--Bob

S B wrote:

> Jeez, what the heck is YOUR problem?

>

> If you found shared something that had helped you, wouldn't you be

> excited? I would be excited for you and wanting to know all about

> it... not giving you a hard time.

>

> If this is an example of this group, I don't think I'll be sticking

> around.

>

> Sara

>

> */ Jaep <Jaep@...>/* wrote:

>

>

>

> It's a miricle then! Who do you think you are kidding ..

>

>

>

>

> * [infections] Greetings from new member

>

> Greeting to all,

>

> My name is Sara and I am brand new here. I am so very glad to

> have

> found this community. I think the very worst part of this whole

> experience has been how alone I have felt as I struggled to find

> answers and solutions.

>

> When I was diagnosed with Fibromyalgia, it was like a double

> edged

> sword. It was such a relief to finally know WHAT was wrong and

> that

> I wasn't just a big whiner cry-baby... but then how to live

> with it

> without living a life of constant pain?

>

> I also have tendonitis and carpal tunnel in both wrists,

> sciatica,

> irritable bowel syndrome, and Chronic Fatigue Syndrome. I was

> just

> hurting so bad, I got depressed, so I would eat... and eat....

> and

> eat. I got fatter and fatter, my symptoms kept getting worse,

> I got

> more depressed.

> So, I ate more and more and more. And got fatter and fatter and

> fatter. The sugar and carbs along with a course of antibiotics

> and I

> added systemic candidiasis to my list of problems.

>

> I was at the point that I just wanted to give up on life,

> because I

> couldbarely make it through the day. When I would finish my

> computer

> work for theday, I wasn't of much help to anyone as I was in

> soooo

> much pain, and had used every bit of energy I could muster up

> to get

> through my work day. I really felt worthless, and was unable to

> enjoy my free time... and forget about doing housework!

>

> At that point, I took a good, hard look at myself. I had always

> wanted something that would help me really live my life to the

> fullest and truly make a difference in my little corner of the

> universe. What was happening to me? My life was passing me

> by... I

> was on the verge of just giving up. Life just didn't feel worth

> living any more.

>

> So I decided that I could no longer depend solely on the medical

> community to help me. I had to become knowledgeable and take more

> control of my treatment and eventual recovery! Just the

> thought of

> it was empowering!!!

>

> So I started reading about alternative nutritional therapy and

> learned about antioxidants.To be very honest with you,

> initially I

> thought it was just a bunch of cr*p. But at that point I was

> such a

> mess, I figured I had nothing to lose. The product that I

> found was

> isotonic (liquid) and had a 90-95% absorption rate rather than

> the

> traditional 5-10% with traditional vitamin tablets.

>

> The first day that I took OPC, I felt no different and

> thought... oh

> well... here we go again BUT... within a week, I was able

> to get

> through a fullday of work without feeling like death! Within a

> month, I was able to do little things to help around the house.

> Within 3 months I could function like a normal person

> again!!!!!!!!

>

> Now don't get me wrong, I'm not running marathons, or out playing

> sports, but I can make it through a FULL day of work,

> housework and

> still have quality time. I have also just added Glucosatrin and

> isotonic B12 which really help with my fibro, tendonitis, rotator

> cuff, sciatica and Chronic Fatigue Syndrome. I stay on a low

> GI diet

> and drink Aloe Juice for help with my IBS.

>

> If that wasn't enough, my blood sugar and triglycerides are now

> normal and my blood pressure is down to my usual 110/70. The

> candida

> is gone and I've also dropped 20 lbs.. without even trying!

>

> I promised myself that if I was ever able to find something that

> would help me that I would tell everyone that I come in contact

> with - and give them a chance to live again. And when I think

> of all

> the money I spent on doctors, meds and treatment that kept me

> isolated in my little house of pain, I could just cry! Now I

> spend

> about $250 a month on my supplements and don't feel like I

> need to move a cot into my doctor's office.

>

> Keep asking questions, get knowledgeable, get to the root, stay

> persistent and the answers will come! Sorry this is so long,

> but I

> really want to help everyone I can learn about this condition and

> help themselves live a relatively pain-free and full life again.

>

> If anyone has any questions, please feel free to contact me at

> any

> time. I'd be more than happy to do anything I can to help

>

> Sara

> living_pain_free@... <mailto:living_pain_free%40>

>

>

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

> Talk is cheap. Use Messenger to make PC-to-Phone calls. Great

> rates starting at 1¢/min.

>

<http://us.rd./mail_us/taglines/postman7/*http://us.rd./evt=39\

666/*http://messenger.>

>

<http://us.rd./mail_us/taglines/postman7/*http://us.rd./evt=39\

666/*http://messenger.>

>

[Guest guest]

Hi Sara, Your post sounded like some kind of ad, right down to the email address. If it wasn't, then please pardon the cynicism. Most of us have been burned by promises and are pretty wary of statements like yours, especially when they have the ring of testimonial marketing. Knowing what we know about our illnesses and how hard they are to treat successfully, it really would be a miracle if we could cure our infections with supplements. But your symptoms certainly sound like many of ours (even down to my own rotator cuff problems) so if you're not secretly trying to profit from people's misfortune and genuinely want to participate in the discussions here, you are more than welcome. And if you've achieved the success you say you have, then I rejoice right along with you. Did you ever diagnose your illness

further than the catchall "FMS"? Did you identify any specific infections? If so, do you believe you eradicated them, or are the antioxidants just relieving the inflammation caused by the infections? penny S B <satellitesab@...> wrote: Jeez, what the heck is YOUR problem? If you found shared something that had helped you, wouldn't you be excited? I would be excited for you and wanting to know all about it... not giving you a hard

time. If this is an example of this group, I don't think I'll be sticking around. Sara Jaep <Jaep@...> wrote: It's a miricle then! Who do you think you are kidding .. -----Original Message-----From: infections [mailto:infections ]On Behalf Of living_pain_freeSent: 07 July 2006 21:48infections Subject: [infections] Greetings from new member Greeting to all, My name is Sara and I am brand new here. I am so very glad to have found this community. I think the very worst part of this whole experience has been how alone I have felt as I struggled to find answers and solutions.When I was diagnosed with Fibromyalgia, it was like a double edged sword. It was such a relief to finally know WHAT was wrong and that I wasn't just a big whiner cry-baby... but then how to live with it without living a life of constant pain?I also have

tendonitis and carpal tunnel in both wrists, sciatica, irritable bowel syndrome, and Chronic Fatigue Syndrome. I was just hurting so bad, I got depressed, so I would eat... and eat.... and eat. I got fatter and fatter, my symptoms kept getting worse, I got more depressed.So, I ate more and more and more. And got fatter and fatter and fatter. The sugar and carbs along with a course of antibiotics and I added systemic candidiasis to my list of problems. I was at the point that I just wanted to give up on life, because I couldbarely make it through the day. When I would finish my computer work for theday, I wasn't of much help to anyone as I was in soooo much pain, and had used every bit of energy I could muster up to get through my work day. I really felt worthless, and was unable to enjoy my free time... and forget about doing housework!At that point, I took a good, hard look at myself. I had always wanted

something that would help me really live my life to the fullest and truly make a difference in my little corner of the universe. What was happening to me? My life was passing me by... I was on the verge of just giving up. Life just didn't feel worth living any more.So I decided that I could no longer depend solely on the medicalcommunity to help me. I had to become knowledgeable and take more control of my treatment and eventual recovery! Just the thought of it was empowering!!! :)So I started reading about alternative nutritional therapy and learned about antioxidants.To be very honest with you, initially I thought it was just a bunch of cr*p. But at that point I was such a mess, I figured I had nothing to lose. The product that I found was isotonic (liquid) and had a 90-95% absorption rate rather than the traditional 5-10% with traditional vitamin tablets.The first day that I took OPC, I

felt no different and thought... oh well... here we go again BUT... within a week, I was able to get through a fullday of work without feeling like death! Within a month, I was able to do little things to help around the house. Within 3 months I could function like a normal person again!!!!!!!!Now don't get me wrong, I'm not running marathons, or out playing sports, but I can make it through a FULL day of work, housework and still have quality time. I have also just added Glucosatrin and isotonic B12 which really help with my fibro, tendonitis, rotator cuff, sciatica and Chronic Fatigue Syndrome. I stay on a low GI diet and drink Aloe Juice for help with my IBS.If that wasn't enough, my blood sugar and triglycerides are now normal and my blood pressure is down to my usual 110/70. The candida is gone and I've also dropped 20 lbs.. without even trying!I promised myself that if I was ever able to find

something that would help me that I would tell everyone that I come in contact with - and give them a chance to live again. And when I think of all the money I spent on doctors, meds and treatment that kept me isolated in my little house of pain, I could just cry! Now I spend about $250 a month on my supplements and don't feel like Ineed to move a cot into my doctor's office.Keep asking questions, get knowledgeable, get to the root, stay persistent and the answers will come! Sorry this is so long, but I really want to help everyone I can learn about this condition and help themselves live a relatively pain-free and full life again.If anyone has any questions, please feel free to contact me at any time. I'd be more than happy to do anything I can to help :)Saraliving_pain_free Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Hey Bob, wish I'd read your post before posting my own answer. You said it very well. Can you tell us any more about your wife and what you've learned through this hellish process? thanks, pennyBob Grommes <bob@...> wrote: Sara,I don't know what 's problem is, but you should be aware that most persons with CFS, Fibro, MCS, Lyme, etc., don't get well or even substantially better by taking a few supplements, which

unless I misunderstand you completely, is the gist of your story. Sometimes people who have gone far, far beyond what you have done to heal yourself, only to continue to get worse, are tempted to wonder if fortunate folk such as yourself live in an alternative universe or are just playing pranks, or what.Personally I am coming to the conclusion that one's clinical picture is not always directly related to the ease with which that picture might be improved, or how easily the right path might be found, or how complicated or simple the solution ends up being. I suspect that some can be profoundly ill based on nothing more than seemingly minor imbalances in nutrition, and others have more complex puzzles to solve. One might have a problem with toxins or infection that does not appear by any objective measure to be a big deal, yet causes untold havoc.My wife has a 30 year debility that has nearly taken her life,

and the solution so far has been difficult and complicated, and nutritional intervention of every kind has been tried and discarded, and we're way beyond that now. So I could only wish that taking some anti-oxidants for a week could bring about measurable relief. Can you understand how we might be sorely tempted to view your story with some chagrin, and maybe even some skepticism?So ... I would suggest that not jump to conclusions so readily, but also that Sara might want to raise her awareness of how very lucky indeed she is. And don't be tempted to assume that what worked for you is the answer for everyone else. That assumption is human nature, but usually incorrect.Best,--BobS B wrote:> Jeez, what the heck is YOUR problem?> > If you found shared something that had helped you, wouldn't you be > excited? I would be excited for you and wanting to know all about >

it... not giving you a hard time.> > If this is an example of this group, I don't think I'll be sticking > around.> > Sara>> */ Jaep <JaepLineone (DOT) net>/* wrote:>> > > It's a miricle then! Who do you think you are kidding ..>> > > > * [infections] Greetings from new

member>> Greeting to all,>> My name is Sara and I am brand new here. I am so very glad to> have> found this community. I think the very worst part of this whole> experience has been how alone I have felt as I struggled to find> answers and solutions.>> When I was diagnosed with Fibromyalgia, it was like a double> edged> sword. It was such a relief to finally know WHAT was wrong and> that> I wasn't just a big whiner cry-baby... but then how to live> with it> without living a life of constant pain?>> I also have tendonitis and carpal tunnel in both wrists,> sciatica,> irritable bowel syndrome, and Chronic Fatigue Syndrome. I was> just> hurting so bad, I got depressed, so I would eat... and eat....> and> eat. I got fatter and fatter, my symptoms kept getting worse,> I got> more depressed.>

So, I ate more and more and more. And got fatter and fatter and> fatter. The sugar and carbs along with a course of antibiotics> and I> added systemic candidiasis to my list of problems.>> I was at the point that I just wanted to give up on life,> because I> couldbarely make it through the day. When I would finish my> computer> work for theday, I wasn't of much help to anyone as I was in> soooo> much pain, and had used every bit of energy I could muster up> to get> through my work day. I really felt worthless, and was unable to> enjoy my free time... and forget about doing housework!>> At that point, I took a good, hard look at myself. I had always> wanted something that would help me really live my life to the> fullest and truly make a difference in my little corner of the> universe. What was happening to me? My life was passing me>

by... I> was on the verge of just giving up. Life just didn't feel worth> living any more.>> So I decided that I could no longer depend solely on the medical> community to help me. I had to become knowledgeable and take more> control of my treatment and eventual recovery! Just the> thought of> it was empowering!!! >> So I started reading about alternative nutritional therapy and> learned about antioxidants.To be very honest with you,> initially I> thought it was just a bunch of cr*p. But at that point I was> such a> mess, I figured I had nothing to lose. The product that I> found was> isotonic (liquid) and had a 90-95% absorption rate rather than> the> traditional 5-10% with traditional vitamin tablets.>> The first day that I took OPC, I felt no different and> thought... oh> well... here we go again

BUT... within a week, I was able> to get> through a fullday of work without feeling like death! Within a> month, I was able to do little things to help around the house.> Within 3 months I could function like a normal person> again!!!!!!!!>> Now don't get me wrong, I'm not running marathons, or out playing> sports, but I can make it through a FULL day of work,> housework and> still have quality time. I have also just added Glucosatrin and> isotonic B12 which really help with my fibro, tendonitis, rotator> cuff, sciatica and Chronic Fatigue Syndrome. I stay on a low> GI diet> and drink Aloe Juice for help with my IBS.>> If that wasn't enough, my blood sugar and triglycerides are now> normal and my blood pressure is down to my usual 110/70. The> candida> is gone and I've also dropped 20 lbs.. without even trying!>> I promised

myself that if I was ever able to find something that> would help me that I would tell everyone that I come in contact> with - and give them a chance to live again. And when I think> of all> the money I spent on doctors, meds and treatment that kept me> isolated in my little house of pain, I could just cry! Now I> spend> about $250 a month on my supplements and don't feel like I> need to move a cot into my doctor's office.>> Keep asking questions, get knowledgeable, get to the root, stay> persistent and the answers will come! Sorry this is so long,> but I> really want to help everyone I can learn about this condition and> help themselves live a relatively pain-free and full life again.>> If anyone has any questions, please feel free to contact me at> any> time. I'd be more than happy to do anything I can to help >> Sara> living_pain_free <mailto:living_pain_free%40>>>> ----------------------------------------------------------> Talk is cheap. Use Messenger to make PC-to-Phone calls. Great > rates starting at 1¢/min. > <http://us.rd./mail_us/taglines/postman7/*http://us.rd./evt=39666/*http://messenger.> > <http://us.rd./mail_us/taglines/postman7/*http://us.rd./evt=39666/*http://messenger.>>

[Guest guest]

Hi Penny,

My wife has had CFS for 30 years, MCS for 6, and had a collapse of her

autonomic nervous system stability about 9 months ago. We have not

conclusively connected the dots as to what the mechanisms of these

symptoms are for her. I monitor this list looking for ideas on the

infection front, but her MCS is so exquisite now (she is to the point of

being labeled a " universal reactor " ) that she is highly reactive to most

abx and indeed, to many prescription drugs.

Her MD believes she probably has Lyme, even though she does not

conclusively test positive for it.

I wish I could tell you what we've learned. The only thing we know for

sure is a few things that may help a few percentage points although they

are all a bit off-topic for this list. Recently we've had some success

with integrative / holistic medicine, which is new territory for us.

Also, off-topic here.

I would like to ask the list, though, if anyone has experience with

Xifaxin. This is normally given for " traveler's diarrhea " but my wife's

MD proposes a course to clear up what he thinks is likely an infection

of the small intestine. She has had tests suggestive of such an

infestation, as well as poor bowel motility / poor peristaltic

activity. Xifaxin is of interest here because it is not well absorbed

into the system, it pretty much stays in the bowel until expelled.

Since my wife has a hard time detoxing many drugs, this is attractive.

She's been taking three different probiotics, trying to establish better

intestinal flora.

She also has a severe magnesium deficiency (she injects IM Mag Sulfate

as often as she can stand it) which we are told is consistent with bugs

consuming whatever Mag is in her gut.

Her doctor is not testing for specifically what is there, as he feels he

would prescribe the same, regardless. He wants to test AFTER, to gauge

whether there is still a problem after the Xifaxin is administered.

It's a 10 day course rather than the typical 3 day course.

Anyone have thoughts or experiences to share?

--Bob

Penny Houle wrote:

> Hey Bob, wish I'd read your post before posting my own answer. You

> said it very well.

>

> Can you tell us any more about your wife and what you've learned

> through this hellish process?

>

> thanks,

>

> penny

[Guest guest]

Boy, that's tough once the chemical sensitivities set in. I have seen people recover from MCS once they get other things under control, but like you say, it's not easy to discover the right path. I hope your doc's on the right track with the new drug. Also, just something to ponder. Tony, who is well now, took a counter intuitive approach to his negative reactions and hypersensitivities by increasing the dosage of his antibiotics. He found that this actually stopped the reaction rather than making it worse. His theory is that when one's infection is large, too small of a dose activates the organism's defenses and stirs them up, increasing the toxin output as well as stimulating the immune response, resulting in feeling really lousy. Naturally this theory of his is considered radical by many and I have no idea if there's any research to back it up. Plus some people would probably claim that he

was actually suppressing his immune system and thereby the normal immune response, BUT he IS well now after being extremely sick, and that's how he did it. So personally I think it's something that should be looked into more. And possibly tried by the brave among us. Regarding discussion topics, pretty much anything is okay for discussion here. It's just that most of us have tried and been disappointed by so many alternative modalities that we've developed pretty demanding standards when it comes to treatment. But I think most of us are still open to just about anything if there's any evidence that suggests it's worth exploring, even if it only relieves some symptoms. Personally, I've done everything from accupuncture to Hyperbaric Oxygen to H202 infusions to human growth hormone to i.v. antibiotics, and everything in between. I've benefitted in varying

degrees to many things, but in the end, the only thing that seems to really substantially help me is pretty serious antimicrobial intervention and an experimental anti-inflammatory. I'm still holding out hope for some breakthrough cure, but it's going to have to be something radically new since I've tried pretty much everything else so far. And it's going to have to prove to be better than the placebo standard, which seems to be pretty prevalent in our community as the best we can hope for. penny Bob Grommes <bob@...> wrote: Hi Penny,My wife has had CFS for 30 years, MCS for 6, and had a collapse of her autonomic nervous system stability about 9 months ago. We have not conclusively connected the dots as to what the mechanisms of these symptoms are for her. I monitor this list looking for ideas on the infection front, but her MCS is so exquisite now (she is to the point of being labeled a "universal reactor") that she is highly reactive to most abx and indeed, to many prescription drugs.Her MD believes she probably has Lyme, even though she does not conclusively test positive for it.I wish I could tell you what we've learned. The only thing we know for sure is a few things that may help a few percentage points although they are all a

bit off-topic for this list. Recently we've had some success with integrative / holistic medicine, which is new territory for us. Also, off-topic here.I would like to ask the list, though, if anyone has experience with Xifaxin. This is normally given for "traveler's diarrhea" but my wife's MD proposes a course to clear up what he thinks is likely an infection of the small intestine. She has had tests suggestive of such an infestation, as well as poor bowel motility / poor peristaltic activity. Xifaxin is of interest here because it is not well absorbed into the system, it pretty much stays in the bowel until expelled. Since my wife has a hard time detoxing many drugs, this is attractive.She's been taking three different probiotics, trying to establish better intestinal flora.She also has a severe magnesium deficiency (she injects IM Mag Sulfate as often as she can stand it) which we are told is consistent

with bugs consuming whatever Mag is in her gut.Her doctor is not testing for specifically what is there, as he feels he would prescribe the same, regardless. He wants to test AFTER, to gauge whether there is still a problem after the Xifaxin is administered. It's a 10 day course rather than the typical 3 day course.Anyone have thoughts or experiences to share?--BobPenny Houle wrote:> Hey Bob, wish I'd read your post before posting my own answer. You > said it very well.> > Can you tell us any more about your wife and what you've learned > through this hellish process?> > thanks,> > penny

[Guest guest]

lol

On 7 Jul 2006, at 23:41, Jaep wrote:

>  

>  

>  It's a miricle then!  Who do you think you are kidding ..

>

>

>  

>  

>  

>   [infections] Greetings from new member

>

>> Greeting to all,

>>

>> My name is Sara and I am brand new here. I am so very glad to have

>> found this community. I think the very worst part of this whole

>> experience has been how alone I have felt as I struggled to find

>> answers and solutions.

>>

>> When I was diagnosed with Fibromyalgia, it was like a double edged

>> sword. It was such a relief to finally know WHAT was wrong and that

>> I wasn't just a big whiner cry-baby... but then how to live with it

>> without living a life of constant pain?

>>

>> I also have tendonitis and carpal tunnel in both wrists, sciatica,

>> irritable bowel syndrome, and Chronic Fatigue Syndrome. I was just

>> hurting so bad, I got depressed, so I would eat... and eat.... and

>> eat. I got fatter and fatter, my symptoms kept getting worse, I got

>> more depressed.

>> So, I ate more and more and more. And got fatter and fatter and

>> fatter. The sugar and carbs along with a course of antibiotics and I

>> added systemic candidiasis to my list of problems.

>>

>> I was at the point that I just wanted to give up on life, because I

>> couldbarely make it through the day. When I would finish my computer

>> work for theday, I wasn't of much help to anyone as I was in soooo

>> much pain, and had used every bit of energy I could muster up to get

>> through my work day. I really felt worthless, and was unable to

>> enjoy my free time... and forget about doing housework!

>>

>> At that point, I took a good, hard look at myself. I had always

>> wanted something that would help me really live my life to the

>> fullest and truly make a difference in my little corner of the

>> universe. What was happening to me? My life was passing me by... I

>> was on the verge of just giving up. Life just didn't feel worth

>> living any more.

>>

>> So I decided that I could no longer depend solely on the medical

>> community to help me. I had to become knowledgeable and take more

>> control of my treatment and eventual recovery! Just the thought of

>> it was empowering!!!

>>

>> So I started reading about alternative nutritional therapy and

>> learned about antioxidants.To be very honest with you, initially I

>> thought it was just a bunch of cr*p. But at that point I was such a

>> mess, I figured I had nothing to lose. The product that I found was

>> isotonic (liquid) and had a 90-95% absorption rate rather than the

>> traditional 5-10% with traditional vitamin tablets.

>>

>> The first day that I took OPC, I felt no different and thought... oh

>> well... here we go again BUT... within a week, I was able to get

>> through a fullday of work without feeling like death! Within a

>> month, I was able to do little things to help around the house.

>> Within 3 months I could function like a normal person again!!!!!!!!

>>

>> Now don't get me wrong, I'm not running marathons, or out playing

>> sports, but I can make it through a FULL day of work, housework and

>> still have quality time. I have also just added Glucosatrin and

>> isotonic B12 which really help with my fibro, tendonitis, rotator

>> cuff, sciatica and Chronic Fatigue Syndrome. I stay on a low GI diet

>> and drink Aloe Juice for help with my IBS.

>>

>> If that wasn't enough, my blood sugar and triglycerides are now

>> normal and my blood pressure is down to my usual 110/70. The candida

>> is gone and I've also dropped 20 lbs.. without even trying!

>>

>> I promised myself that if I was ever able to find something that

>> would help me that I would tell everyone that I come in contact

>> with - and give them a chance to live again. And when I think of all

>> the money I spent on doctors, meds and treatment that kept me

>> isolated in my little house of pain, I could just cry! Now I spend

>> about $250 a month on my supplements and don't feel like I

>> need to move a cot into my doctor's office.

>>

>> Keep asking questions, get knowledgeable, get to the root, stay

>> persistent and the answers will come! Sorry this is so long, but I

>> really want to help everyone I can learn about this condition and

>> help themselves live a relatively pain-free and full life again.

>>

>> If anyone has any questions, please feel free to contact me at any

>> time. I'd be more than happy to do anything I can to help

>>

>> Sara

>> living_pain_free@...

>>

>

>

[Guest guest]

Welcome !

My head is spinning too, and I've been at this for several years with

my 5-1/2 year old. Now we're working on the 18 month old too, since

he is delayed in some of the same ways.

The DAN's love CLO for some reason. Our's has the baby on a 1/4 tsp

right now, but I asked if it was OK to add the Omega 3-6-9 because

the CLO didn't seem to be doing anything. I am starting to here a

few new words and sounds with the 3-6-9, but it too soon to give the

fish oil full credit. DMG did nothing for us, and we may try TMG

which is similar. However, the DAN just gave us a prescription for

the mB12 injections today, and he and the nurse have high hopes.

(Really, I mostly deal with the nurse, who is FANTASTIC.) The nurse

agreed that the oral mB12 doesn't do much, but it helps some kids in

a different way than the shots. I wouldn't worry about the missing

vitamin A unless you are following a vitamin A protocol of some kind

that requires it.

I've gotta run, because the baby is done napping and screaming his

head off, but let me say one more quick thing: I think auditory

processing is big part of most of these language delays, and there

are lots of easy ways to work on that home. Will try to post some

later, but look for posts by Janice. She's the expert on that one.

in NJ

>

> Hi everyone,

> I can't remember if I've introduced myself or not. I've spent

> countless hours reading thru your posts, as well as those on the

> dispraxia/apraxia group. I'm just slightly overwhelmed. ANy help

> from any of you would be greatly appreciated. Here's our scoop:

>

> *Blake is 6 and mildly dyspraxic (had speech for articulation, but

> was an early fluent talker.) ALso low tone.

> *Owen is 2 3/4 (does that make sense? 32.5 months old) and is also

> low tone, and we believe globally dyspraxic...and for sure we

believe

> verbally apraxic (although his speech path still isn't sure if it's

> that or auditory processing?)

>

> Here's what we're doing for Owen:

> *Speech 2 x per week, although Regional Center just approved for a

> 3rd hour

> *PT 2 x per week

> *OT 1 x per week

> *ABA anywhere from 4-6 hours per week (even though he's not on the

> spectrum. Regional Center convinced me it could still help. ????)

> *Nordic Naturals Omega 3-6-9 - 1 tsp every day of this oil.

> *GF/CF/Soy-free diet

>

> Questions:

> *Like I said, my mind is spinning trying to understand all the bio-

> med interventions...where to start...what to do next. I'm not sure

I

> like this DAN doctor we saw last spring. But I don't know what to

do

> next. She's the main name you see here in O.C. (California)

dealing

> with this stuff. It seems too overwhelming to manage on my own.

> *The DAN doctor recommended the next step to be MB-12 shots. Any

> thoughts?

> *Also, she wanted my son on CLO, not the Omega 3-6-9...so I did do

> the CLO but after a couple months of that switched to the Omega 3-6-

9

> oil (liquid) and he's been on that for about 8 months. Not being

on

> the CLO means he isn't getting the Vitamin A found in it, other

than

> what he gets in his diet and multi.

>

> Please help....any thoughts/feedback would be greatly appreciated.

> Owen is making slow and steady progress but isn't closing any of

the

> gaps documented in his evaluations over the past 1 1/2 years. But,

> then again, one of his specialists says that that standardized

> testing on dyspraxic kids isn't worth the paper it's printed on.

>

> Warmly,

> Pearson

>