Re: New Here

[Guest guest]

Welcome!! We're glad you found us too.

This group has been a fantastic source of information and encouragement for

me as I'm sure it will be for you too. The people on here are the greatest.

Where are you from? There is probably a PSCer near you on this list.

God's blessings,

Barby

married 20 years, mom of 5 sons- KS

UC - dx in 1965 (11yo), ostomy 1972, BCIR (continent ostomy)1994

PSC- dx in 1999

[Guest guest]

In a message dated 07/09/2000 1:53:41 PM Central Daylight Time,

hooch@... writes:

<< Did you feel that sense of

relief too when you found this group? >>

Yes, I sure did! I found the group in March right before I went through

the liver transplant evaluation. I have learned so much. My liver

information file has grown tremendously.

Now if I am having a bad day I vent on the group (others have done this too

). My husband listens but just can't understand and most others don't

have a clue. Since my main sympton is fatigue most people just can't

understand or say it must be because of having 5 children etc. It is not

just fatigue-it is FATIGUE. lol

Have you read some of the archinves and found an answer to your diet

question. We have discussed that in the past. I haven't changed my diet

except to cut down on fat a little so I didn't answer your question.

Stay cool.

Barby

married 20 years, mom of 5 sons- KS

UC - dx in 1965 (11yo), ostomy 1972, BCIR (continent ostomy)1994

PSC- dx in 1999

[Guest guest]

Thanks for the welcome Barby.

I'm in Charlotte, NC. I see there is someone named Dayna that lives

here in Charlotte too. I just sent her an email. Hoping she will

respond.

It just feels so great finding others. Did you feel that sense of

relief too when you found this group? I have been searching so long.

Cheryl

[Guest guest]

Welcome Cheryl,

I'm the wife of a PSCer who also has Ulcerative Colitis. They

thought he had Crohn's for several years but they diagnosis was

definitely UC when he had a subtotal colectomy a couple of years

ago. I know it's a great relief for us to have this group. My

husband doesn't use a computer but he communicates through me! I met

2 PSC people from this group in person and everyone is so supportive

and wonderful. Feel free to ask anything. We're here for you,

Grace and Ed Reynolds

Ed-PSC, dx'93, listed '98

[Guest guest]

Welcome Cheryl.

My wife is 42 and has (had?) PSC and UC. She got a liver transplant

last October and is doing well. We have a teenage daughter.

had PSC for about 12 years before her transplant. The rate of

progression of PSC varies a lot from person to person. 's liver

function tests like ALT actually were highest about 5 to 8 years before

transplant.

Sounds like you are getting good treatment, some doctors don't really know

what to do about this disease since it is relatively rare.

Hope all goes well for you.

Roy T.

----- Original Message -----

> I'm so glad I found this site. I no longer feel so 'alone'. I have

> had PSC for 9 years, together with Crohn's. Actigal was working for

> me until this past year. I just started on Ursodiol and had an MRCP

> and liver biopsy done this past month. I get more bloodwork done

> next week and see the doc again on the 20th. The only thing I know

> now is that there were no major strictures found and no cirrhosis.

> Last lab results had ALT levels at 579, the highest so far, so hoping

>

>

> Cheryl

>

[Guest guest]

Cheryl,

Just sent you a personal e-mail. I am from Raleigh.

Marsha

[Guest guest]

Sorry for the last email...should have read further. That is so cool.

Maybe we could get together sometime. I have never met another person with

PSC. There is also a gal here in Charlotte I'm hoping to meet. Sounds like

you have been thru a lot. Very frustrating, but so much nicer with support

from others who understand and can relate. I'm glad you recovered okay from

January's nasty bout. I still try to figure out how this disease is

progressing and where I might be 5 years from now with it. I guess I'm

starting to come around to the point that things will take a turn for the

worse soon since I've had elevated LFT for 9 years. I was hoping my diet,

meds, supplements, and exercise would hold me, but am learning there's just

no stopping it. Thankfully, I haven't had anything other than the fatigue,

and that's a hit or miss thing...good days and bad. I am learning so much

here.

It's so good to talk to you. I hope to do more of it.

God bless!

Cheryl

Re: Re: New here

> Cheryl,

> Just sent you a personal e-mail. I am from Raleigh.

> Marsha

>

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>

[Guest guest]

Oops. Thought I sent that personal from email and didn't know it

came here...LOL. Welcome to my little world...hehehhe. =)

Cheryl

[Guest guest]

Welcome Kyla! i just joined this group a week or so ago and am

already finding lots of help and advice. I am from Cleveland Ohio,

what part are you from? Hope youre having a comfortable night, as

much as possible,

" Kyla " wrote:

>

> hi all,

> i'm kyla, 29, from ohio. i joined because i am in constant pain and

> one of my doctors seems to think i have fibro. more later, my

hands hurt.

> kyla

[Guest guest]

i'm near mansfield, about an hour and half south of

you. we'll be at the cavs game in march!! lol my son

plays upwards basketball and the team gets to go, make

foul shots on the court and things like that. it

should be fun.

its mostly my shoulders, arms and hands that hurt,

along with CONSTANT pain in my lower back. i'd love to

have just one day when my back doesn't hurt. some days

my legs hurt to, so bad its painful to stand.

my

podiatrist, of all dr.'s, has decided its fibro and

wants me to talk to my family physician when i go back

on the 8th. he knows that dr. personally and said

trust me, he won't think you're crazy lol.

he also

said he'd write a letter expressing his concerns for

me. its not so much the dr. i don't want to talk to,

its the nurse. she just doesn't have a very good

bedside manner.

kyla

[Guest guest]

I had a nurse like that at my rheumotologist. I simply did not like her. She

was rude and when she took my blood pressure my arm hurt really bad and she came

up with a blood pressure of 190 over something and my pressure is usually very

low. The next day I had to go in to my primary for blood work and my arm where

the cuff was was black and blue. That doc's office head nurse called the

rheumo's head nurse and complained. That nurse lost her job. I felt bad

however they told me they had many complaints about her and the other nurses in

the office were glad to see her go! Me too! Gwen

its the nurse. she just doesn't have a very good

bedside manner.

kyla

[Guest guest]

Hi Kyla,

Welcome. I'm 28. I have Fibro, too.

Uabi

--- Kyla wrote:

> hi all,

> i'm kyla, 29, from ohio.

>

>

>

__________________________________________________

[Guest guest]

Hi Kyla,

I've just recently joined the group and I'm sure you'll find the

members as supportive as I have.

I have Fibro along with a few other things, there are many here that

have Fibro also, I'm sure you'll find comfort and help here.

Wishing you the best,

[Guest guest]

Just keep reading and forgive yourself -- and know that there are many of us

here who had the same feeling after giving this stuff to our kids. Please read

the older posts -- use search with several keywords to target info. For example

you might want to search == joint ache. My son had joint aches for quite awhile

and it has gone away. Add keyword oxalate and you'll find info regarding the

'why'. Don't forget the files section too,

>

> I am not sure where to start. I hope I can type through my tears, as this

information is just overwhelming. My son is 7 and has been on Miralax since he

was 3. I would always ask the Dr., are you sure long term use is okay. I never

felt it was right. Fortunately, my son does not need Miralax now on a daily

basis but I feel so stupid now for not putting all these symptoms together. He

urinates infrequently. He has tics and OCD symptoms. He even went through a

" tic " phase of licking his fingers. He complains of joint and bone pain, which

prompted this research. Is there anyway to prove this is from the Miralax?

Will these symptoms disappear now that he no longer takes Miralax?

>

[Guest guest]

Hang in there...............they do improve with time and water............lots of love

To: miralax Sent: Mon, January 3, 2011 9:05:37 PMSubject: New Here

I am not sure where to start. I hope I can type through my tears, as this information is just overwhelming. My son is 7 and has been on Miralax since he was 3. I would always ask the Dr., are you sure long term use is okay. I never felt it was right. Fortunately, my son does not need Miralax now on a daily basis but I feel so stupid now for not putting all these symptoms together. He urinates infrequently. He has tics and OCD symptoms. He even went through a "tic" phase of licking his fingers. He complains of joint and bone pain, which prompted this research. Is there anyway to prove this is from the Miralax? Will these symptoms disappear now that he no longer takes Miralax?

[Guest guest]

Hi Tammy,

I saw an EAV practitioner for almost 3 years about 15 years ago. Like your practitioner, she did a lot of diagnosis and sold me lots of homeopathics. I kept seeing her because no one else had anything to offer--I'd been through all the doctors with no success. But I finally gave up on her because after 3 years and loads of money, I was no better at all. Maybe EAV works, maybe homeopathics work--but they didn't work for me in the hands of that practitioner. And it was very expensive. If I'd known then what I know now, I'd have spent that money on rife equipment.

Peggy

From: Lyme_and_Rife [mailto:Lyme_and_Rife ] On Behalf Of tammyco5@...Sent: Thursday, January 27, 2011 9:31 AMTo: Lyme_and_Rife Subject: New Here

Hello,

I was diagnosed with Lyme Disease a few days ago via Electro-dermal screening. (EAV.) This was my main problem that came up along with kidney and brain chemical issues. I was shocked to hear Lyme to say the least and I'm now questioning the accuracy of this method. I am a skeptic that there can be any hope of getting healthy since I have felt so bad for years now. I thought I had Fibromyalgia caused from Candida, toxins, and or emotional trauma. I didn't have very much money to spend on products so the practioner sent me home with 2 homeopathic remedies. One is Lym and the other is Cerbromax which is for my brain. I go back in a month and by then I will have my tax money. She said to give it 3 months before I start seeing improvement. I can be patient but I want to know if you all think this method is accurate and this treatment is good? I am also on vitamins and know I need to improve my diet but I'm working on this. ;-)

I hurt all over like I'm bruised all over my body. I can't work or do much of anything. Let's just say I'm totally miserable as I'm sure many of you are here too. Also, I have had horrible sinus problems for years. My nose is very clogged and I had sinus surgery 5 years ago but it only helped for about 6 months. Could this be from Lyme?

Thanks in advance for your help!

Tammy

[Guest guest]

Hi Peggy,

Thanks for sharing this. I will keep this in mind. I actually had a Rife device and lost it within a few months after buying it. I think my husband accidentally threw it away as I had put it in a brown bag. There went $250 down the drain! hah

Tammy

Hi Tammy,

I saw an EAV practitioner for almost 3 years about 15 years ago. Like your practitioner, she did a lot of diagnosis and sold me lots of homeopathics. I kept seeing her because no one else had anything to offer--I'd been through all the doctors with no success. But I finally gave up on her because after 3 years and loads of money, I was no better at all. Maybe EAV works, maybe homeopathics work--but they didn't work for me in the hands of that practitioner. And it was very expensive. If I'd known then what I know now, I'd have spent that money on rife equipment.

Peggy

[Guest guest]

Hi Tammy,

You might be talking about something like Dr. 's zapper. I had one of those. My experiences with those cheap machines is that you get about as much benefit from throwing it away as from using it. They're way too weak to do much against anything as bad as Lyme. Once again, just my experience. Mine did nothing except irritate my skin.

Peggy

From: Lyme_and_Rife [mailto:Lyme_and_Rife ] On Behalf Of tammyco5@...Sent: Thursday, January 27, 2011 1:57 PMTo: Lyme_and_Rife Subject: Re: New Here

Hi Peggy,

Thanks for sharing this. I will keep this in mind. I actually had a Rife device and lost it within a few months after buying it. I think my husband accidentally threw it away as I had put it in a brown bag. There went $250 down the drain! hah

Tammy

[Guest guest]

Yes, that's what it was called....a zapper. I thought the Rife was the same thing but I guess I need to do my reading on this group. It's hard to sit at the computer for very long. Peggy, when were you diagnosed with Lyme? I was just wondering if it showed when you had your EAV done.

Tammy

Hi Tammy,

You might be talking about something like Dr. 's zapper. I had one of those. My experiences with those cheap machines is that you get about as much benefit from throwing it away as from using it. They're way too weak to do much against anything as bad as Lyme. Once again, just my experience. Mine did nothing except irritate my skin.

Peggy

[Guest guest]

No, the zapper is not even close to being a Rife machine. It's really, really puny. You can learn a lot about the relevant machines from the info Jim will send you (or already has), without having to do a ton of research first. Then you can read about the machines on his list, if you want to learn more.

I was diagnosed with Lyme in January, 2000. I'd been sick since January, 1984, but no one had looked at Lyme as a possibility before 2000. I was with the EAV practitioner from 1996-1998 and no, she didn't find Lyme. I was shocked when I was diagnosed--my numbers were off the charts. I emailed the EAV person to tell her about the diagnosis and to mention my surprise that I'd seen her for 3 years without her detecting it. Her response was that all the work she had done had cleared my system enough so that a doctor could uncover the Lyme. Which left the question why she had never uncovered it herself. But she refused to take any responsibility for that.

Peggy

From: Lyme_and_Rife [mailto:Lyme_and_Rife ] On Behalf Of tammyco5@...Sent: Thursday, January 27, 2011 3:00 PMTo: Lyme_and_Rife Subject: Re: New Here

Yes, that's what it was called....a zapper. I thought the Rife was the same thing but I guess I need to do my reading on this group. It's hard to sit at the computer for very long. Peggy, when were you diagnosed with Lyme? I was just wondering if it showed when you had your EAV done.

Tammy

Hi Tammy,

You might be talking about something like Dr. 's zapper. I had one of those. My experiences with those cheap machines is that you get about as much benefit from throwing it away as from using it. They're way too weak to do much against anything as bad as Lyme. Once again, just my experience. Mine did nothing except irritate my skin.

Peggy

[Guest guest]

Zapper di dnot do anyhting to me

the coil does

Marie

To: Lyme_and_Rife Sent: Thu, January 27, 2011 3:33:18 PMSubject: RE: New Here

No, the zapper is not even close to being a Rife machine. It's really, really puny. You can learn a lot about the relevant machines from the info Jim will send you (or already has), without having to do a ton of research first. Then you can read about the machines on his list, if you want to learn more.

I was diagnosed with Lyme in January, 2000. I'd been sick since January, 1984, but no one had looked at Lyme as a possibility before 2000. I was with the EAV practitioner from 1996-1998 and no, she didn't find Lyme. I was shocked when I was diagnosed--my numbers were off the charts. I emailed the EAV person to tell her about the diagnosis and to mention my surprise that I'd seen her for 3 years without her detecting it. Her response was that all the work she had done had cleared my system enough so that a doctor could uncover the Lyme. Which left the question why she had never uncovered it herself. But she refused to take any responsibility for that.

Peggy

From: Lyme_and_Rife [mailto:Lyme_and_Rife ] On Behalf Of tammyco5@...Sent: Thursday, January 27, 2011 3:00 PMTo: Lyme_and_Rife Subject: Re: New Here

Yes, that's what it was called....a zapper. I thought the Rife was the same thing but I guess I need to do my reading on this group. It's hard to sit at the computer for very long. Peggy, when were you diagnosed with Lyme? I was just wondering if it showed when you had your EAV done.

Tammy

Hi Tammy,

You might be talking about something like Dr. 's zapper. I had one of those. My experiences with those cheap machines is that you get about as much benefit from throwing it away as from using it. They're way too weak to do much against anything as bad as Lyme. Once again, just my experience. Mine did nothing except irritate my skin.

Peggy

[Guest guest]

Dear Tammy ,

When dct K told me I had lyme from my husband. I disbelived him even thought he healed me temporarly but completly with ozone in one week no more trace of any crawling fatigue.

5 years later here are the first paralysis exactly like my husband this time I understood wha twas going on it took an othe ryear for th etest to get back positive.

Homeopathic never worked for me so I am not the right person to ask this I dought anybody used only it .

A liver flush may help your pain and every symptoms for a mignatur eprice as it is olive oil epson salt grape fruit juice and lemon it works very well dispite of it s simplicity some time better than a colonic . SO price wise it is the first thing to try as well as for it s power. you will find eassaly the recepy seraching on this ofrum at liver cleanse and liver flush. Soem Doctor just detox , do not kill th ebacterias to me it is a non sens but I say it to enphasis the importance of detox.

here is by order of efficaicity the treaments that worked for me with the price

1)Coil machine 1500$ once for ever

2)Silver 1 to 2 bottle a day silver generator + ppm meter around 300$ once for ever

or bu tI cannot assu reit yet the radiac tha tdo the same thing but we are only 3 to have

tryed it : Olivier who is healing with only that it is remarquable , an othe rwho did not put

his experience yet and me but it was so strong on me tha tI had to stopp as th eherx was too

much . beside I had at the same time a natural treatment that gave me also a herx so things

are not clear enought to give a clear opinion about this radiac . If it is wha tit looked to me it

may be sufficiant unfortunatly I cannot say as I was taking something new at the sametime

and it mixed the conclusion I would have taken otherwise. I had a delayed very strong herx

the 5 and 6 day and ollivier had exactly the same delayed herx so it may be it bu tI am not

sure not anought people have tryed it to say it works each time like for the coil

Ozone generator 2500$ once for ever + 10$ every 2 months of oxygene ( healed

my companion kidneys that were lost in 9 month he escaped from dialysis) there are non medical grade as cheap as 85$ for ozonated water

LDN 38 euros per 6 month treatment

Silver 1 to 2 bottle a day silver generator + ppm meter around 300$ once for ever

gerovital 1 box of 5 vial 17 euros per month plus seringe plus needle for mor eeffectiveness you may take it by pills for facility

armor thyroid not too expensive need to check you T3 T4 TSH to check if you have hypothyroidy

MMS is of great help even thought it is not sufficiant it cost peanuts 15$ a bottle for 3 month kills most pathogenes including viruses di dnot work fo rmy paralysis but owrked for other things for me .

Detox is a must

welchol to absorb toxines very expensive like 180 dollars 2 month bu tther eare other extremely cheape I cannot take becaus eof intestine paralysis like charcoal , clay etc that may fit you .

I have to get colonic 2 per weeks 75$ each

you may use a colema once for good 220 box if you do not have intestine paralysis it will

do a very good job

Hoping this will help you

with my most encouraging thought Marie

To: Lyme_and_Rife Sent: Thu, January 27, 2011 9:30:56 AMSubject: New Here

Hello,

I was diagnosed with Lyme Disease a few days ago via Electro-dermal screening. (EAV.) This was my main problem that came up along with kidney and brain chemical issues. I was shocked to hear Lyme to say the least and I'm now questioning the accuracy of this metho Td. I am a skeptic that there can be any hope of getting healthy since I have felt so bad for years now. I thought I had Fibromyalgia caused from Candida, toxins, and or emotional trauma. I didn't have very much money to spend on products so the practioner sent me home with 2 homeopathic remedies. One is Lym and the other is Cerbromax which is for my brain. I go back in a month and by then I will have my tax money. She said to give it 3 months before I start seeing improvement. I can be patient but I want to know if you all think this method is accurate and this treatment is good? I am also on vitamins and know I need to improve my diet but I'm working on this. ;-)

I hurt all over like I'm bruised all over my body. I can't work or do much of anything. Let's just say I'm totally miserable as I'm sure many of you are here too. Also, I have had horrible sinus problems for years. My nose is very clogged and I had sinus surgery 5 years ago but it only helped for about 6 months. Could this be from Lyme?

Thanks in advance for your help!

Tammy

[Guest guest]

Hello,

I am also new to this group and could use advice for our 13 year-old daughter.

I feel very ignorant and guilty because she has suffered from constipation her

entire life and I have naively followed our pediatrician's instructions and just

treated her symptoms with products like Citrucel and Miralax the last few yrs.

She has probably never had a healthy gut - she was hospitalized at 3 wks old for

an umbilical cord infection and given massive antibiotics via IV. Looking back

she probably never really got a good start with " healthy bacteria. " Then cycles

of UTI's, more antibiotics, more constipation - it hasn't been pretty. She is

on the ASD spectrum and takes meds for that.

Very recently I got advice and have been seeing a clinical nutritionist who put

her on probiotics, enzymes, Omega-3, as well as some homeopathic remedies and as

much good fiber as we can get down her. We weaned her off the Miralax but she

has become extremely constipated again. Being a teenager it is not easy getting

her to change her diet but we are plugging away. The most recent attempt to get

her bowels moving has been an elimination diet - we have done no gluten, no

dairy, and no corn now for 3 weeks. I wish I could say I have seen a difference

- but no improvement. She is going days without a BM. We are also doing

magnesium tablets in the evening, Natural Calm in orange juice and two doses of

vitamin C powder in drinks per day. I don't know what more we can do, would

really welcome more suggestions. After her system has seen such trauma, do we

need to be patient about seeing improvement, or should we be seeing results by

now? - Thank you!

Alene

> >

> > My dd is 4 years old and has been constipated since birth. She had

> > trouble passing her meconium just hours after birth and required

> > rectal stim with a thermometer to go. She struggled until she was 9

> > months old and we were sent to a Ped. GI.

> >

> > She was immediately checked for Hirschsprung's disease by means of

> > barium enema, when it came back normal we were sent home with

> > instructions to use MOM or Mineral Oil and come back as needed.

> >

> > She continued to struggle with bowel movements and was eventually

> > given a rectal manometry and suction biopsy to double check

> > Hirschsprung's disease. When those came back normal- her Ped. GI

> > ordered a lumbo sacral spinal MRI to check for hidden spina bifida,

> > a.k.a. " occulta spina bifida " or tethered corn issues. Her MRI was

> > normal.

> >

> > She has since had a Sitz Marker Test, which is a test for mobility of

> > the colon, and she swallowed 24 tiny rubber bands (I mixed them in

> > yogurt) and then went in 3 days later for an xray. The bands show up

> > on xray and they can see how many are left and where they are in the

> > colon. Her's were almost all gone (she had had some bowel movements on

> > MOM during this test) and the few that were left were near the bottom.

> >

> > The GI's are pretty clueless and are leaning towards a Pelvic Floor

> > issue, but I'm leary. Of course they recommended Miralax to which I

> > regret using for almost a year during all of this.

> >

> > I have since stopped the Miralax and I'm trying to help her go with

> > 1tsp. Kids Calm, 1 tsp. Benefiber and FruitEze (which I have to sneak

> > fruiteze in smoothies or she won't take it so the fruiteze is not

> > everyday)

> >

> > How much Mag Citrate can a 38 lb. 4 year old have? Her GI recommended

> > against it, and would rather me do MOM but the MOM just gives her

> > diarrhea and I'd like her to experience normal stools.

> >

> > Am I giving enough of Kids Calm & Benefiber? So far, she's STILL

> > constipated! Can I safely give her a bigger dose?

> >

> > Does her story sound familiar? I'm constantly feeling like she has an

> > underlying issue the doctors aren't finding and we feel so helpless.

> >

> > Thanks,

> > Tricia

> >

>