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Mark, Welcome to this group. I hope you'll gain a lot of useful information from the posting. I also describe the spasm pain like a heart attack .(which I have never had).I hope you have con't success---Nell, Michigan

>From: "surreyuk2003 "

>Reply-achalasia

>achalasia

>Subject: New Member

>Date: Mon, 20 Jan 2003 17:29:31 -0000

>

>Just discovered this website even though I have suffered from

>achalasia for about 3 years now.

>Just had my first balloon dilation last Thursday. Luckily they did

>not

>rupture anything and indeed, despite some internal bruising (which is

>starting to diminish), my swallowing has improved substantially. The

>down side though is I have had a lot more severe spasm pains (if

>that's what the pains are - nobody really seems to know do they?).

>Anyway, from reading some of the chat on this site I have a few

>observations/comments:

>1. The two consultants I have seen - both professing to have some

>knowledge of achalasia - seem to think that the spasm pain is rare.

>Yet everyone on this site seems to get them!! I have been almost

>embarrassed to describe the pain like having a heart attack - because

>this seems melodramatic and I haven't had a heart attack. However,

>most of you can probably relate to just how excruitiatingly painful

>the attacks are.

>2. I have been put on a number of pills to try to suppress the

>attacks - and the nif spray. The pills have been useless and I only

>tried the nif spray twice and concluded that the headache and very

>minor relief (if at all) wasn't worth it. I have tended to relieve

>the pain by drinking lots of water. I get most of the pains through

>the night (so perhaps reflux related?) and sometimes have to drink 5

>or 6 glasses of water to get rid of it - and then spend the rest of

>the night getting up to the loo!! However, I read with real interest

>that some of you eat dry biscuits to relieve the pain and I've tried

>that over the last few days and it works really well - plus it's

>easier to carry a couple of biscuits than a bottle of water.

>3. The last treatment I had was last September and that was the botox

>injection - I've only had it once. I was told it would take a week to

>kick in fully and then last for 6 to 9 months. However, it kicked in

>immediately such that the next day my swallowing was fantastic - but

>the downside was it only lasted about 10 days. It's a bit worrying to

>read that some of you think that the botox and balloon treatments can

>impair the chances of a successful full operation.

>4. I think I will eventually need the full operation - as somebody

>said, all the other treatments just seem to be putting off the

>inevitable. I live in the UK and it seems that we take the view that

>the laparoscopic approach to this is still in its infancy so there is

>no real choice here other than the 'open up the chest' approach - I

>suspect we are just lagging behind the US.

>5. One advantage to achalasia - I have lost 14lbs in the last year or

>so! People keep saying how trim I look - little do they know that I

>just can't physically get the food down - plus to be fair I am

>avoiding fizzy drinks / fried food / etc. I also find it actually

>exhausting eating in the sense that I eventually just get too tired

>trying to carry on forcing the food down.

>

>As I say, I had the balloon dilation 4 days ago and so far so good -

>but following my expoerience with botox I am not 'counting my

>chickens'!

>

>Mark ( Surrey, UK)

>

The new MSN 8 is here: Try it free* for 2 months

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Hi Mark, Welcome to the group. I am pretty new here myself but am so glad I found it. I am happy your dilation is giving you good results! They can work for decades, I understand, although I am one of the ones who has opted for myotomy (coming up Feb 5).

A lot of info has been posted before but sometimes it is easier to access by repeating it here. For nighttime problems I just kept backing up the time of last eating or drinking anything before I went to bed and when I got to four hours before bed I had fewer symptoms. Also elevate head of bed. Also I had relief from eliminating artificial additives, especially colors, flavors and preservatives, from my diet. Also I take Protonix, which is like Prilosec, Prevacid or Nexium.

Glad you found the group.

Kathy

New Member

Just discovered this website even though I have suffered from achalasia for about 3 years now.Just had my first balloon dilation last Thursday. Luckily they did not rupture anything and indeed, despite some internal bruising (which is starting to diminish), my swallowing has improved substantially. The down side though is I have had a lot more severe spasm pains (if that's what the pains are - nobody really seems to know do they?).Anyway, from reading some of the chat on this site I have a few observations/comments:1. The two consultants I have seen - both professing to have some knowledge of achalasia - seem to think that the spasm pain is rare. Yet everyone on this site seems to get them!! I have been almost embarrassed to describe the pain like having a heart attack - because this seems melodramatic and I haven't had a heart attack. However, most of you can probably relate to just how excruitiatingly painful the attacks are.2. I have been put on a number of pills to try to suppress the attacks - and the nif spray. The pills have been useless and I only tried the nif spray twice and concluded that the headache and very minor relief (if at all) wasn't worth it. I have tended to relieve the pain by drinking lots of water. I get most of the pains through the night (so perhaps reflux related?) and sometimes have to drink 5 or 6 glasses of water to get rid of it - and then spend the rest of the night getting up to the loo!! However, I read with real interest that some of you eat dry biscuits to relieve the pain and I've tried that over the last few days and it works really well - plus it's easier to carry a couple of biscuits than a bottle of water.3. The last treatment I had was last September and that was the botox injection - I've only had it once. I was told it would take a week to kick in fully and then last for 6 to 9 months. However, it kicked in immediately such that the next day my swallowing was fantastic - but the downside was it only lasted about 10 days. It's a bit worrying to read that some of you think that the botox and balloon treatments can impair the chances of a successful full operation.4. I think I will eventually need the full operation - as somebody said, all the other treatments just seem to be putting off the inevitable. I live in the UK and it seems that we take the view that the laparoscopic approach to this is still in its infancy so there is no real choice here other than the 'open up the chest' approach - I suspect we are just lagging behind the US.5. One advantage to achalasia - I have lost 14lbs in the last year or so! People keep saying how trim I look - little do they know that I just can't physically get the food down - plus to be fair I am avoiding fizzy drinks / fried food / etc. I also find it actually exhausting eating in the sense that I eventually just get too tired trying to carry on forcing the food down.As I say, I had the balloon dilation 4 days ago and so far so good - but following my expoerience with botox I am not 'counting my chickens'!Mark ( Surrey, UK)

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Dear Mark

Welcome to the group. I also had my dilation done last week and I am

suffering from more acid attacks. Taking proton suppressers pills. it

helps.

I have shared my dilation experience and problems after the dilation.

Pls. refer to my messages No. 7053 and 7116.

All the best

Wing in Kuala Lumpur Malaysia.

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Hi Mark,

I'm pleased to hear your swallowing has improved somewhat but also

sorry to hear about the more severe spasms.

> 1. The two consultants I have seen - both professing to have some

> knowledge of achalasia - seem to think that the spasm pain is rare.

> Yet everyone on this site seems to get them!! I have been almost

> embarrassed to describe the pain like having a heart attack -

The consultant radiologist my daughter was sent to last year for her

barium swallow said that dysphagia (swallowing problems) can cause

heart attack-like pains. He himself had experienced it at a wedding,

when a piece of sandwich had lodged itself above the entry to the

stomach and caused him an enormous amount of pain.

He diagnosed her achalasia on the first swallow of the 'banana

lemonade' as Stephi called it. Good job she enjoyed it - she's back

there in a few weeks.

> 2. I have been put on a number of pills to try to suppress the

> attacks - and the nif spray. The pills have been useless and I only

> tried the nif spray twice and concluded that the headache and very

> minor relief (if at all) wasn't worth it.

I'm interested to hear of people's experience with medication. Since

Stephi tends to get only one or two speasms a month and they last

only around a minute, we have decided to do pain management through

breathing rather than go the drug route. By the time we had found

the meds, she would almost certainly be over her spasm, and I think

it's better someone be there with her.

I certainly don't fancy the idea of her suffering a headache for

longer than the spasm lasts!

> It's a bit worrying to

> read that some of you think that the botox and balloon treatments

can

> impair the chances of a successful full operation.

There is research which suggests this - I saw it mentioned in an

article at:

http://www-east.elsevier.com/ajg/issues/9412/ajg1639fla.htm

Their reference no 54, points to a study by Gordon and Eager.

> I live in the UK and it seems that we take the view that

> the laparoscopic approach to this is still in its infancy so there

is

> no real choice here other than the 'open up the chest' approach

We are also in the UK. Someone has already mentioned Mr Haddad but

he is a paediatric surgeon based at Chelsea and Westminster hospital

in London tel 020 8746 8000. I don't know whether he would be

prepared to do this surgery on an adult.

Mr Haddad has now performed 11 lap Hellers. His first 6 were done

over a period of 4 years; his last 5 have been since July 31.

Our consultant here in Nottingham suggested that I point adults in

this group in the direction of Mr Ian Beckingham, who is based at

Nottingham's Queen's Medical Centre tel 0115 924 9924. You don't

need a referral to pick up the phone and speak to Mr Beckingham's

secretary - you can ask if he does perform the surgery and then go

about getting a referral to him, if appropriate.

Good luck with finding a solution.

--

Sue

Mum to Stephi, 6yo

Nottingham UK

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--Myoplex lite is the best, I believe. Where are you from?

Jen

- In , " episcojew

<episcojew@y...> " <episcojew@y...> wrote:

> Hi everyone! My name is Liz, and I just joined the group. I am

24,

> and a SAHM to my 1 year old son. I just found out a few days ago

> about the BFL program, and I am almost done with the book.

>

> I would like to ask ya'll a question. What products do you find

wor

> the best (myoplex, myoplex light, results for women, etc), and

where

> is the cheapest place to buy them from? My hubby and I just

bought a

> house, and we are on a VERY fixed income. I would like to do the

> program right, but I don;t have alot of extra money to spend on

the

> supplements and shakes. Any suggestions?

>

> I appreciate the help in advance!

>

> Liz

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Hi Jen! Thanks for the info and the welcome! I am in FL. I lived

in Texas fo a few year after I got married, but came back to my home

state just this summer. Where are you located?

Liz

> > Hi everyone! My name is Liz, and I just joined the group. I am

> 24,

> > and a SAHM to my 1 year old son. I just found out a few days ago

> > about the BFL program, and I am almost done with the book.

> >

> > I would like to ask ya'll a question. What products do you find

> wor

> > the best (myoplex, myoplex light, results for women, etc), and

> where

> > is the cheapest place to buy them from? My hubby and I just

> bought a

> > house, and we are on a VERY fixed income. I would like to do the

> > program right, but I don;t have alot of extra money to spend on

> the

> > supplements and shakes. Any suggestions?

> >

> > I appreciate the help in advance!

> >

> > Liz

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---

Good old Mass. I was in Texas once for bootcamp! I also have a son

he just turned 2 in October! My gram and uncle are living in Florida

now. I visited them last year. God I wish I was in FL right about

now its like 10 degrees.

JEn

In , " episcojew

<episcojew@y...> " <episcojew@y...> wrote:

> Hi Jen! Thanks for the info and the welcome! I am in FL. I

lived

> in Texas fo a few year after I got married, but came back to my

home

> state just this summer. Where are you located?

>

> Liz

>

>

>

> > > Hi everyone! My name is Liz, and I just joined the group. I

am

> > 24,

> > > and a SAHM to my 1 year old son. I just found out a few days

ago

> > > about the BFL program, and I am almost done with the book.

> > >

> > > I would like to ask ya'll a question. What products do you

find

> > wor

> > > the best (myoplex, myoplex light, results for women, etc), and

> > where

> > > is the cheapest place to buy them from? My hubby and I just

> > bought a

> > > house, and we are on a VERY fixed income. I would like to do

the

> > > program right, but I don;t have alot of extra money to spend

on

> > the

> > > supplements and shakes. Any suggestions?

> > >

> > > I appreciate the help in advance!

> > >

> > > Liz

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Hey, I live in Texas, Fort Worth.....grew up in

Illinois, Wisconsin, so I'm considered a Yankee down

here, even though my Grandparents are from Ireland and

the other side are Native Americans...go figure.

C

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LOL! I lived in Austin and in the Dallas metroplex. I've always

been a southerner. I did develop a slight " southern drawl " while I

was there, though. :)

> Hey, I live in Texas, Fort Worth.....grew up in

> Illinois, Wisconsin, so I'm considered a Yankee down

> here, even though my Grandparents are from Ireland and

> the other side are Native Americans...go figure.

> C

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Hey Liz-

Welcome to the group!!!! I use the Myoplex Lite, but I have heard that the reg

myoplex is the same if you split a packet. I found the cheapest place is

www.vitaglo.com plus they ship free! :) Plus you don't HAVE to use

shakes/supps unless you're entering the challenge, then you have to take at

least ONE... good luck!!!!:)

~kimmah

New Member

Hi everyone! My name is Liz, and I just joined the group. I am 24,

and a SAHM to my 1 year old son. I just found out a few days ago

about the BFL program, and I am almost done with the book.

I would like to ask ya'll a question. What products do you find wor

the best (myoplex, myoplex light, results for women, etc), and where

is the cheapest place to buy them from? My hubby and I just bought a

house, and we are on a VERY fixed income. I would like to do the

program right, but I don;t have alot of extra money to spend on the

supplements and shakes. Any suggestions?

I appreciate the help in advance!

Liz

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Hi, Lyn. Welcome! Are you nursing? It sounds like you are chosing

to selectively immunize? What are your reasons for giving any shots

of Hep B. If you are nursing, there is little chance your baby will

have problems with the bacteria that the Hib vaccine is for. Hep B

vaccines typically have a lot of mercury. Did you make sure that

your DTaP was thimerasol free? Sorry for the 20 questions. I have a

son with autism-and he got the Hep B at birth as well. He then went

on to get all his vaccines as any 'good' (ha ha) compliant parent

would do. My second son is partially vaccinated. My third, a girl,

is not vaccinated at all.

> Hi, I am new here and hope to skim the archives for some info. My

> name is Lyn and I am mommy to a nine year old daughter dx'ed with

> autism, a healthy but very active three year old daughter and a

> healthy 3 month old son. I had my oldest vaccinated as was

> recomended in 1993, including the hep b at birth. My 3 year old

> waited until 2 months for her first hep b and we held off on the

mmr

> until she was 2 and she had her titers checked. My son had dtap

and

> hib/hep b combo at 2 months. Now as his next appt nears I am

trying

> to determine which shots , if any, I want. I really hate this ride

> we are on because I truly am torn... the way I see it, either way..

> if he gets sick.. I will be guilty, shots or no shots... remind me

> why I pay a doctor again.. LOL! I have no evidence that my oldest

> was damaged by vaccines and truly believe that autism is caused by

a

> combination of things, not just vaccines. But since we already

have

> autism in the family I know full well it can happen again. So

that's

> my story... I look forward to reading your posts!

>

> Lyn

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Hi ... yes, i am exclusively nursing my little one and i have no

excuse except stupidity for giving the hep b... i really like our ped

and she is fine with me selectively vaccinating so i totally trusted

her opinion at our last check when she suggested giving the dtap..

thimerasol free, of course, and the hib/hep b combo.. also thimerasol

free. she wanted us to come back at 3 months for prevnar and polio

but we didn't and since then i have decided against prevnar

altogether. how old are your kids? thanks for the info..i have a

lot of research to do!

lyn

> Hi, Lyn. Welcome! Are you nursing? It sounds like you are

chosing

> to selectively immunize? What are your reasons for giving any

shots

> of Hep B. If you are nursing, there is little chance your baby

will

> have problems with the bacteria that the Hib vaccine is for. Hep B

> vaccines typically have a lot of mercury. Did you make sure that

> your DTaP was thimerasol free? Sorry for the 20 questions. I have

a

> son with autism-and he got the Hep B at birth as well. He then

went

> on to get all his vaccines as any 'good' (ha ha) compliant parent

> would do. My second son is partially vaccinated. My third, a

girl,

> is not vaccinated at all.

>

>

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Dear Lyn,

I am the parent of a child who was diagnosed with autism. I am convinced that

these children suffer from post vaccination syndrome.

I would be very cautious about vaccinating your other children since Dr. Walsh

from the Pfeiffer Treatment Center has shown that an inborn error in metal-

metabolism may be the fundamental cause of autism. Dr. Walsh has found that

about 99% of the autistic patients tested exhibited metallothionein(MT)

dysfuntion or an MT defect. If your daughter has this defect, your other

children may too. And there is other heavy metals in vaccines as well as Hg

(mercury). Note--Vaccines containing thimerosal were never recalled. They are

slowly being used up. All flu shots contain thimerosal. Check your inserst if

you vaccinate. Go here to read Dr. Walsh's abstract on MT dysfunction.

http://www.hriptc.org/metal_autism.html

Also, I attended a conference in Pittsburgh, PA on the Biomedical aspects of

autism and other related disorders this month January 18, 03. And Dr. Anju I.

Usman from the Pfeiffer Treatment Center presented their work on autism and MT

dysfunction. Their research is eye opening and sure explains why so many

metabolic pathways go astray in our kids. At the conference I feel Dr. Usman

sumed it up nicely with this information on two of her slides:

Aftermath of Heavy Metal Toxicity

__________________________

* Disordered Metal Metabolism--Low zinc, High Cu, Low essential minerals

* Oxidative Stress--High levels of ROS, Low antioxidant levels

* Dysfunctional Liver Detoxification--Depletion of cofactors, Sulfation

defects, Undermethylation

* Decreased Energy Production(ATP)--Krebs cycle abnormalities, increased

intracellular calcium

* Peroixdation of Cell Membranes--Leaky gut, Renal wasting

---food allergies, autoimmunity, opiod peptides. loss of sulfate, Mg, Zn

* Immune, Endocrine, Neurologic Abnormalities

The Biochemical Aftermath of Autism

______________________________

* Toxic Metal Overload

* Copper Overload

* Zinc Depletion

* Low Sulfate, Low Methyl, Low Glutathione

* Neurotransmitter Imbalance

* Dysbiosis (parasites, fungi, atypical bacteria, virusis, anaerobes)

* Elevated urinary peptides and food sensitivities

* Abnormal immune markers

This certainly described my son and has answered so many unanswered questions

when it came to some of his laboratory test.

Especially the High Cu, Low Zn thing. When he was four(2002) we had an

Elemental Analysis done on his blood. Copper (Cu) was off the charts--very high

and his Zinc (Zn) was low. Doc. or I didn't know what to make of it at the

time, but finally I now know.

One other note, if you chose not to vaccinate, there are homeopathic ways to

build up immunity to prevent disease. There are also remedies to cure illness.

You do need to become informed about alternative treatment(s) and /or have a

homeopathic doctor.

Generally unhealthy diseased tissue is what sets our bodies up for infection.

And in my opinion vaccinations damage our bodies, upset our immune systems and

may cause diseases later in life that we wouldn't associate as being vaccine

induced.

And, vaccination does not guarentee immunity.

Lynda

---- Original Message -----

From: Lyn <monee101@...>

Vaccinations

Sent: Monday, January 27, 2003 5:09 PM

Subject: new member

Hi, I am new here and hope to skim the archives for some info. My

name is Lyn and I am mommy to a nine year old daughter dx'ed with

autism, a healthy but very active three year old daughter and a

healthy 3 month old son. I had my oldest vaccinated as was

recomended in 1993, including the hep b at birth. My 3 year old

waited until 2 months for her first hep b and we held off on the mmr

until she was 2 and she had her titers checked. My son had dtap and

hib/hep b combo at 2 months. Now as his next appt nears I am trying

to determine which shots , if any, I want. I really hate this ride

we are on because I truly am torn... the way I see it, either way..

if he gets sick.. I will be guilty, shots or no shots... remind me

why I pay a doctor again.. LOL! I have no evidence that my oldest

was damaged by vaccines and truly believe that autism is caused by a

combination of things, not just vaccines. But since we already have

autism in the family I know full well it can happen again. So that's

my story... I look forward to reading your posts!

Lyn

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WELL, IF, I was going to go the selective vaccination route, I would

not get Prevnar if I was nursing and my child was not in daycare.

And since Polio is not prevalalent, I would skip that one as well,

something a child can get later in life if internation travel is

called for. Hopefully, your ped will be flexible with this???

Excellent it is thimerosal free, but there are concerns at Aluminum

as an adjuvant as well. And then there is the whole - vaccination

interfering with immune system stuff - which I obviously agree with

at this point - after a long time of struggling with it, I might add.

Ethan is 4.75

is 3.25

Jeanne is 9 mos

> Hi ... yes, i am exclusively nursing my little one and i have

no

> excuse except stupidity for giving the hep b... i really like our

ped

> and she is fine with me selectively vaccinating so i totally

trusted

> her opinion at our last check when she suggested giving the dtap..

> thimerasol free, of course, and the hib/hep b combo.. also

thimerasol

> free. she wanted us to come back at 3 months for prevnar and polio

> but we didn't and since then i have decided against prevnar

> altogether. how old are your kids? thanks for the info..i have a

> lot of research to do!

>

> lyn

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Welcome Simone. It is great to hear that you " caught " your weight

gain before it got out of hand. Do you have any before and after

pictures of your 60 lb weight loss? I'm sure they would be hugely

inspiring to all of us here. Post often because i'm sure we can

learn a lot from someone who has had your success!!

Lynda

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Simone,

My glass (of water)- actually it is a two gallon jug- I lift to you for your

courage and determination. Getting and keeping our bodies healthy is as tough as

keeping a sharp mind, studying soul and a clean spirit. It just seems easier to

get down about the body as it is so visible. I wish you the best and a

challenge full of faith -Faith is believing in things unseen- If you ever need

an ear, or shoulder, about the stress of kids and puppy and hubby and

CHOCOLATE.....I may be your gal, although my shoulders tend to be my weakest

body part, they are good for crying on (and wiping snot) and I've got pretty

good hearing as well! Good luck!

C

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Hi .

Welcome to the group. It can be hard to get the group's attention

sometimes. We seem to be a little stressed right now, if you haven't

gotten much response to your introduction.

There has been a lot of discussion of Coagulase Negative Staph lately

which we are currently hoping provides some physical explanation of

our illness. I don't know if this is the same germ that you are

pursuing. For more information see posts #50911 (if this is too much

to read skip down to: The theory), 51201 and 53165. I wish I could

give you a good concise explanation but I can't.

A lot of jargon is used so the newsgroup may be confusing at first,

but if you follow the group and ask questions people will help you.

It does take some persistence sometimes though. Again, welcome and

good luck in your search for better health!

Tom

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> Hi

> My name is , I'm 34 and have had CFIDS(ME) for 6 years. I live

in London with my Fiance . > I am shortly to have a PCR test for

l-form gram negative staphyloccocus. I have not found very much

information regarding this on the web so I would be very grateful if

anyone could tell me anything about this bacteria, its implications

for CFIDS and treatment for this infection

>

, I missed your coming on as a new member and I apologize and

welcome. tom said most of it. when you say you are having a PCR test

for the l-form negative staph, where is the suspected staph? In your

nasal cavities? I ask this b/c some one had it in her jaw! I stumbled

on something that helps me feel better and for a year, did not know

why, but I think I do now. I take a cold medicine that has

dextromethorphan hydrobromide in it and it dries me up. I suspect now

that it is stopping the CNS toxins from dripping down into the gut

where it wreaks havoc.

Welcome aboard and we are an experimental list so most here have

tried a lot, some that worked.

Bob

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Hi

Welcome to the group(better late than never).

Would you think me really nosey if I asked where you are having your

test done?

I am suffering from a bad sinus infection at the moment and the usual

brain fag that goes with it so if I have already asked you this

please excuse me.

Regards

Dave x

> Hi

>

>

> My name is , I'm 34 and have had CFIDS(ME) for 6 years. I live

in London with my Fiance . I became unwell following a bout of

influenza 6 years ago and was at first only moderately affected,

however, since struggling without a diagnosis for 3 years and then

loosing my job and my house and having to move in with unsuportive

parents for two years, I have become severely affected and spent most

of the last two years bedbound. Thankfully I am now in rented

accomodation and since having low dose hydrocortisone treatment and

treatment for subclinical hypothyroidism I have improved somewhat. I

am still housebound but rarely have to spend any of the day in bed.

>

>

> The main area where the hydorcortisone has helped has been in

making me more resistant to colds. I have been plagued by them for a

couple of years now and since I have chronic sinusitis they usually

cause an acute flare which makes me particularly unwell. For anyone

with ME who has recurrent acute sinusitis following colds I would

recommend treatment for adrenal fatigue - it does mostly help keep

colds at bay

>

>

> I am shortly to have a PCR test for l-form gram negative

staphyloccocus. I have not found very much information regarding

this on the web so I would be very grateful if anyone could tell me

anything about this bacteria, its implications for CFIDS and

treatment for this infection

>

>

> I look forward to talking with list members and sharing experiences

>

>

> Best Wishes

>

>

>

>

>

>

>

>

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Welcome, welcome, welcome. There are lots of great

girls here that can give you support and

encouragement. Congratulations on making it this far

and good luck on the next nine and a half weeks!

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Hi Dave

Hi

Welcome to the group(better late than never).

Would you think me really nosey if I asked where you are having your

test done?

No not at all Dave. A Dr in Bolton (UK) is organising the test for me.

Apparently he's been liasing with a university (?) in the UK to get the test

developed. I've not done the test yet cos its not ready for a couple of weeks

yet. I'm afraid thats all I know cos I've only spoken to Dr once and was

a bit brain fogged that day. When I have more details I can let you know. Are

you in the UK??

Best Wishes

I am suffering from a bad sinus infection at the moment and the usual

brain fag that goes with it so if I have already asked you this

please excuse me.

Regards

Dave x

> Hi

>

>

> My name is , I'm 34 and have had CFIDS(ME) for 6 years. I live

in London with my Fiance . I became unwell following a bout of

influenza 6 years ago and was at first only moderately affected,

however, since struggling without a diagnosis for 3 years and then

loosing my job and my house and having to move in with unsuportive

parents for two years, I have become severely affected and spent most

of the last two years bedbound. Thankfully I am now in rented

accomodation and since having low dose hydrocortisone treatment and

treatment for subclinical hypothyroidism I have improved somewhat. I

am still housebound but rarely have to spend any of the day in bed.

>

>

> The main area where the hydorcortisone has helped has been in

making me more resistant to colds. I have been plagued by them for a

couple of years now and since I have chronic sinusitis they usually

cause an acute flare which makes me particularly unwell. For anyone

with ME who has recurrent acute sinusitis following colds I would

recommend treatment for adrenal fatigue - it does mostly help keep

colds at bay

>

>

> I am shortly to have a PCR test for l-form gram negative

staphyloccocus. I have not found very much information regarding

this on the web so I would be very grateful if anyone could tell me

anything about this bacteria, its implications for CFIDS and

treatment for this infection

>

>

> I look forward to talking with list members and sharing experiences

>

>

> Best Wishes

>

>

>

>

>

>

>

>

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Hi

thanks for replying

Yes I am in the UK (warrington) not too far from Bolton.

I also consult Dr as does at least one other member of the

group. I am also waiting to hear when the test will be available.

They also told me about two weeks.

There is a Dr Hyams in London dealing with CFS have you tried him

for testing?

Regards

Dave x

>

> Hi Dave

>

>

> Hi

> Welcome to the group(better late than never).

> Would you think me really nosey if I asked where you are having

your

> test done?

> No not at all Dave. A Dr in Bolton (UK) is organising the

test for me. Apparently he's been liasing with a university (?) in

the UK to get the test developed. I've not done the test yet cos its

not ready for a couple of weeks yet. I'm afraid thats all I know cos

I've only spoken to Dr once and was a bit brain fogged that

day. When I have more details I can let you]

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  • 2 weeks later...

Hello . From my experience on this list, most people are

curious as to what you attribute your 'keeping pretty well now

compared with how you used to be'. Is it nutrition, drugs, whatever?

Thanks and welcome to the list.

Mike C.

> hello everyone..

> im new to this site, i have had m.e. for 14yrs 8

of

> which went undiagnosed..although i keep pretty well now comapred

> with how i used to, i would love to hear from anyone with this

> horrible illness..

>

> pagan.x

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Riaan,

Welcome to the list.

Best Wishes

Ian

New Member

I joined the group today (17 Feb 2003).

I am an Offshore Medic having worked for Diamond Offshore and Pride

Foramer

up the West Coast of Africa and South Africa since 1995.

I am a registered Paramedic with the SA Health Professions Council

(ANT0002100).

Before coming offshore I worked six years on the road and spent another

five

as Senior Training Officer and Deputy Chief of a Metro.

My days off are spent scuba diving, hiking and mountain biking (or just

lazing around).

My door (email) is always open to any questions, discussions and

assistance.

Kind Regards,

Riaan Norval

Telephone: +27 83 6939389

Fax Number:+27 21 8524714

PO Box 5738

HELDERBERG

7135

SOUTH AFRICA

_________________________________________________________________

Find love with a simple SMS - LoveSMS

http://www.msn.co.za/mobile/lovesms/

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