introducing myself

[Guest guest]

Happy Diwali!

Let me take you to Nairobi (Kenya), where the problem of dreaded malaria is too much to control. This is just to share few of the things, which I myself observed in that country in 2002 as regards to malaria.

· In Kenya, all anti-malarial drugs are commonly accessible as OTC even at small ‘kiosks’ (In Kenya, small shops at roadsides are called as kiosks). These drugs are sometimes misused irrationally.

· Its pity to see several patients of resistant malaria. Several children and women may particularly be seen at OPDs of many government and private hospitals.

· Intense research by international scientists was going on at that time at KEMRI, which was one of the national prestigious institutes of medical research.

· Both MSF and WHO had ventured joint program for ACT (Artemisinin-based Combination Therapy).

Fortunately, the same situation is not seen here in India. Dr. Trupti Swain may throw more light on these parts particularly with reference to Orissa!

Syed Ziaur Rahman

Aligarh

Introducing myself

Dear Friends,

Wishing you all Happy and prosperous Diwali

It’s great pleasure to introduce myself to you.

I work at S.C.B Medical College, Cuttack, Orissa as

Assistant professor in Pharmacology, with 11 years

of teaching experience. I am trained in Clinical Pharmacology

both from K.E.M Hospital Mumbai & PGI Chandigarh.

Recently I concentrate myself on Rational Use of Medicine.

I am trained on Rational Use of Medicine by International

training course on RUD in community and

Teaching Rational Drug therapy ’a national level workshop

along with Dr Meera and Dr Gajjar.

Am I too lengthy?

A few lines about RUM Scenario in Orissa:

Govt. of Orissa has adopted the policy of RUD with

technical support from DSPRUD since 1997. We have a

central procurement of medicine for Govt. hospitals.

Dept. Of Pharmacology was the nodal centre for preparation

of Standard treatment guideline & rivision of Essential Drug List for our state.

Now I am working with a NGO with permission from Govt. of Orissa

I am your new moderator for the topic ‘Rational Use of Antimalarials’.

I am relatively new to your forum.

Hope all will cooperate.

Trupti Swain

__________________________________________________

[Guest guest]

Hi Simon,

Welcome! I hope this forum helps you to learn more and get better.

Although far from an expert myself, it seems that there might be some

underlying condition that is preventing you from responding to all

these treatments - food allergies, adrenal stress, candida, gut

dybiosis, IBS... It might be worth testing for some of these. Just a

thought.

[Guest guest]

Dear Simon

Welcome to the forum and I hope you get all the help and support you need to regain your normal health once again.

Reading through your message, there could be several things that are holding you up and why your treatment (whatever combination) is not making you well.

1) You have already realised the possibility that you could be suffering with low adrenal reserve. Do let us know the results of your 24 hour salivary test when you get them. You could have low cortisone in the morning and high at night when you should be going to sleep. It should be the other way round. It will also be interesting to see where your DHEA lie. I assume you previously got your morning cortisol tested at your hospital. This test is not thorough and patients are usually told everything is fine. To get a true reading, you should be tested at 4 specific times during the day, starting at 8.00a.m. and finishing at 12.00 midnight. No amount of thyroid hormone either T4 alone, synthetic T4/T3 combination or natural thyroid extract is going to do the trick for you if your adrenals are pooped and if it is found they are, then you will require supplementation to boost them.You can do the Adrenal Questionnaire which you will find in our FILES and see how you score.

2). You could be suffering with Candida Albicans (read everything you can in our website www.tpa-uk.org.uk or in the FILES on the forum website). You can do a home test to see if this might be a problem for you. Before you go to bed, take a glass tumbler and fill it with cold water (preferably boiled to get rid of impurities) and place it at the side of your bed. On waking, and before you get out of bed, drink anything or clean your teeth, work up as much spit as you can and spit it into the top of the water in the glass. After or while, if you have Candida, you will see tendrils falling from your spit towards the bottom of the glass and the water might actually go cloudy. You can also do the Candida Questionnaire which again, you will find in our FILES. If you test positive for Candida, there are various options you can take to get rid of this, mainly through diet, but there are tablets that will help too. Again, if you do have Candida Albicans, this too will stop you absorbing any thyroid hormone replacement and needs to be tackled. We will meet this hurdle if you test positive.

3) Ask your GP to test to see if you have low ferritin (stored iron). For a man, the reference interval is between 25 and 300 (for a woman it is between 20 and 200). Yours should really be at least 70 to 90. If it is very low, this too will stop your thyroid hormone supplement from being absorbed by your body and you will need to take some good elemental iron such as Ferrous Sulphate. Please remember though, if this is your problem and you have to take iron, take this as far away from your thyroid hormone as possible as one stops the other from working. If you take thyroxine in the morning, take your iron supplement at least 3 to 4 hours away.

I hope this is of some help to you. Please ask as many questions as you feel you need answers to and we will try to help where we can. I am not medically qualified and only give an opinion on what I have learned since opening this forum.

Sheila

Introducing myself

Greetings to all members!I've just joined and I'm still to have a proper trawl through themessage archive, but you asked for an introduction within 24 hours, soI'd better not delay any longer.I'm 37 and my health has been poor since my early 20s: chronicfatigue, high susceptibility to infections, body unable to healquickly, weight loss. Went undiagnosed for 10 years, diagnosedhypothyroid in 2004 (without medication my TSH is around 8 and my freeT4 around 11). I've been on several different treatment regimes underthe observation of different GPs and endocrinologists. I've triedT4/T3 combinations, armour (which didn't agree with me), and I'mcurrently on 200 micrograms T4 per day, having increased graduallyfrom 50, now supervised by Dr Skinner. I have to say I still feel justas tired, and see no difference in my immunity or healing capacity.The one plus so far is that I don't feel the cold as badly as I didtwo or three years ago in winter (actually I needed a hot-water bottlein bed for at least half the year back then!)I'm about to take a salivary adrenal stress profile test: although twomorning cortisol blood tests came back negative I do suspect adrenalfatigue, mainly because of my unusual energy patterns. I feelpositively awful in the mornings and best late at night, into the weehours. Other symptoms include recurring respiratory difficulties,frequent headaches and a craving for salty foods.I do hope I can learn something from the group's collective wisdom andwill try to contribute whre I can, whether on a personal or acampaigning level.Take care one and all,Simon.

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.17.0/1180 - Release Date: 10/12/2007 14:51

[Guest guest]

>

> Dear Simon

>

> Welcome to the forum and I hope you get all the help and support you

need to regain your normal health once again.

>

> Reading through your message, there could be several things that are

holding you up and why your treatment (whatever combination) is not

making you well.

>

> 1) You have already realised the possibility that you could be

suffering with low adrenal reserve. Do let us know the results of your

24 hour salivary test when you get them. You could have low cortisone

in the morning and high at night when you should be going to sleep. It

should be the other way round. It will also be interesting to see

where your DHEA lie. I assume you previously got your morning cortisol

tested at your hospital. This test is not thorough and patients are

usually told everything is fine. To get a true reading, you should be

tested at 4 specific times during the day, starting at 8.00a.m. and

finishing at 12.00 midnight. No amount of thyroid hormone either T4

alone, synthetic T4/T3 combination or natural thyroid extract is going

to do the trick for you if your adrenals are pooped and if it is found

they are, then you will require supplementation to boost them.You can

do the Adrenal Questionnaire which you will find in our FILES and see

how you score.

>

> 2). You could be suffering with Candida Albicans (read everything

you can in our website www.tpa-uk.org.uk or in the FILES on the forum

website). You can do a home test to see if this might be a problem

for you. Before you go to bed, take a glass tumbler and fill it with

cold water (preferably boiled to get rid of impurities) and place it

at the side of your bed. On waking, and before you get out of bed,

drink anything or clean your teeth, work up as much spit as you can

and spit it into the top of the water in the glass. After or while, if

you have Candida, you will see tendrils falling from your spit towards

the bottom of the glass and the water might actually go cloudy. You

can also do the Candida Questionnaire which again, you will find in

our FILES. If you test positive for Candida, there are various options

you can take to get rid of this, mainly through diet, but there are

tablets that will help too. Again, if you do have Candida Albicans,

this too will stop you absorbing any thyroid hormone replacement and

needs to be tackled. We will meet this hurdle if you test positive.

>

> 3) Ask your GP to test to see if you have low ferritin (stored

iron). For a man, the reference interval is between 25 and 300 (for a

woman it is between 20 and 200). Yours should really be at least 70 to

90. If it is very low, this too will stop your thyroid hormone

supplement from being absorbed by your body and you will need to take

some good elemental iron such as Ferrous Sulphate. Please remember

though, if this is your problem and you have to take iron, take this

as far away from your thyroid hormone as possible as one stops the

other from working. If you take thyroxine in the morning, take your

iron supplement at least 3 to 4 hours away.

>

> I hope this is of some help to you. Please ask as many questions as

you feel you need answers to and we will try to help where we can. I

am not medically qualified and only give an opinion on what I have

learned since opening this forum.

>

> Sheila

>

> Introducing myself

>

>

> Greetings to all members!

> I've just joined and I'm still to have a proper trawl through the

> message archive, but you asked for an introduction within 24 hours, so

> I'd better not delay any longer.

> I'm 37 and my health has been poor since my early 20s: chronic

> fatigue, high susceptibility to infections, body unable to heal

> quickly, weight loss. Went undiagnosed for 10 years, diagnosed

> hypothyroid in 2004 (without medication my TSH is around 8 and my free

> T4 around 11). I've been on several different treatment regimes under

> the observation of different GPs and endocrinologists. I've tried

> T4/T3 combinations, armour (which didn't agree with me), and I'm

> currently on 200 micrograms T4 per day, having increased gradually

> from 50, now supervised by Dr Skinner. I have to say I still feel just

> as tired, and see no difference in my immunity or healing capacity.

> The one plus so far is that I don't feel the cold as badly as I did

> two or three years ago in winter (actually I needed a hot-water bottle

> in bed for at least half the year back then!)

> I'm about to take a salivary adrenal stress profile test: although two

> morning cortisol blood tests came back negative I do suspect adrenal

> fatigue, mainly because of my unusual energy patterns. I feel

> positively awful in the mornings and best late at night, into the wee

> hours. Other symptoms include recurring respiratory difficulties,

> frequent headaches and a craving for salty foods.

> I do hope I can learn something from the group's collective wisdom and

> will try to contribute whre I can, whether on a personal or a

> campaigning level.

> Take care one and all,

> Simon.

>

>

>

>

>

>

>

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

>

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.503 / Virus Database: 269.17.0/1180 - Release Date:

10/12/2007 14:51

>

Many thanks for such detailed advice, Sheila (and thanks to too).

I've been taking my saliva samples today for an adrenal stress

profile, and I will let you know the results. The serum cortisol blood

tests were done at my GP's surgery, by the way (the last one was

455nmol/l).

I also tried the candida home test this morning - and, yes, there were

tendrils! I also score high on the candida questionnaire. Since my

diet contains absolutely no refined sugar whatsoever, and I'm not

aware of any food allergies (other than a loathing of sweet things) it

seems implausible that the fungus could survive, but nevertheless I

will now ask the lab to to do a secretary IgA test at the same time (I

assume that's the test Dr Peatfield is referring to when he writes

'salivary antibody test'?).

By the way, the link on this page of your website:

http://www.tpa-uk.org.uk/candida_albicans.php

to NPTech's site should read www.nptech.co.uk and not www.nptech.com.

Once again, thanks, I hope to report back soon!

Simon

[Guest guest]

Many thanks Simon, I have noted the mistake in the NPTech link and asked Lee to correct this. I have also asked NPTech for an updated list of the blood and salivary tests they do together with an updated price list as they do appear to have been increased since my September 2006 list.

Let us know the results of your tests when you have these.

BTW, for the sake of all our members who have opted to receive Daily Digests of all our messages, or those who read direct from the website, please can you delete the bulk of the previous messages and just leave a little of what you are responding to. This will save an enormous amount of frustration.

Sheila

I also tried the candida home test this morning - and, yes, there weretendrils! I also score high on the candida questionnaire. Since mydiet contains absolutely no refined sugar whatsoever, and I'm notaware of any food allergies (other than a loathing of sweet things) itseems implausible that the fungus could survive, but nevertheless Iwill now ask the lab to to do a secretary IgA test at the same time (Iassume that's the test Dr Peatfield is referring to when he writes'salivary antibody test'?).By the way, the link on this page of your website:http://www.tpa-uk.org.uk/candida_albicans.phpto NPTech's site should read www.nptech.co.uk and not www.nptech.com.Once again, thanks, I hope to report back soon!Simon

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.17.1/1181 - Release Date: 11/12/2007 17:05

[Guest guest]

Welcome, Ella. Feel free to write as much as you need to here. You

have hit the jackpot - you've found the place where everyone is going

through what you are going through and everyone understands!

Give the MTX a little more time - it took about 8 weeks for me before

I had any significant improvement, and it takes 12 or more for some

people. And don't despair; even if the MTX doesn't do it for you,

your great rheumy will move on to the next med in the arsenal and he

WILL find the right combo for you.

Call your rheumy and tell his nurse about the mouth sores. They will

likely tell you to double or triple your dose of folic acid. Folic

acid depletion is what is causing the sores. MTX interferes with

your body's utilization of folic acid so you have to take megadoses

in order for a little of it to get through and do you some good.

People take from 1-5 mg daily. Check with your rheumy, though. Call

his office - don't wait until your next appointment.

Please keep your chin up - you WILL get better!! Less than 2 years

ago I was bedridden, literally. I could not walk, could not dress

myself, could not shampoo my own hair, etc. I had to quit working

and go on disability. For me, this all happened very suddenly and

was quite a shock. It has taken some time, but I am doing much, much

better. I now have hope for the future again!

You are on the right track and I promise your life is not going to be

ruined!

best regards,

sherry z

[Guest guest]

I was on methotrexate for twenty years.....I have arthritis in my feet, hands,

knees. etc....it has kept me walking.....but served it's usefulness....I know

you don't feel well on it but it will give you a much better chance for

mobility....I am 46 and mine started as a young teenager.

anne

[Guest guest]

Hi Ella

I find that in the USA the Medics prescribe 1mg Folic Acid whilst in South

Africa the only strength available is 5mg which is taken daily. There is

generally less side effects such as mouth sores and loss of energy. I can

not say to much about loss of hair as I was almost bald by the age of 30 and

only stated with Psoriasis and PA a few years later. You may have to

increase the MTX. At present I take 22.5mg weekly plus Arava. My Psoriasis

is okay but still have pain in most of my joints but still able to work a 60

plus hours a week.

Regards

Graham

[Guest guest]

Hi everyone,

Thank you for the warm welcome. I had two rough days but have been

doing better the last couple of days.

I do have to say that my rheumy warned me that the first one or two

days after taking MTX could be rough. This is why he recommended that

I take my dose on a Friday night or Saturday night.

I don't know if I will ever get used to being tired but then again I

have a 4 year old so how much of it is chasing a preschooler and how

much is the PA

I called my doctors office. My mouth sores went down so he said to

wait until I get in there on the 16th before I increase the folic

acid. He said that he may move me to 2mg a day on that if they

reoccur in the next week. Said the same thing about giving MTX a

chance to really work.

I get concerned because of how rough it is on the liver and my mom

died of a liver diesase. It just scares. Thankfully he knows that and

we have talked at length about it and what the implications are for

changing meds, etc.

Thanks again and I look forward to getting to know everyone.

Ella

[Guest guest]

Ella, what liver disease did your mom have? Mine died of primary liver

cancer. I also worried about the effect of these meds on my liver

because of that history. MTX raised my liver enzymes several times so

eventually I had to go off it and on one of the biologicals.

regards,

sherry z

--- In , " Ella " <malone7384@...>

>> I get concerned because of how rough it is on the liver and my mom

> died of a liver disease.

[Guest guest]

Hello Ella,

What part of Oregon do you live? I lived in County south of Roseburg

for 50 + years, raised

my family there until I found I could no longer liver alone on disability. So I

sold my home and moved

to Ca to live with my daughter. We just went back to spend New Years with the

rest of our family. I came

home with a bad case of the flu (even with a flu shot) and we almost froze to

death up there. I haven't been

gone that long, I didn't think anyway. I have been on the MTX for almost 6

years now and I do ok. I believe

my fibro causes me more problems than the PA at this point.

As far as the friends are concerned, some ask how are you, but really don't want

to know. So I finally started

telling everyone who asks that I am either having a good day or a bad day. If

they utter something and move

on, so be it. If they are really interested, they stay and ask further

questions and then I tell. them. God only

knows why people don't think you can have pain without blood or some lesion or

deformity that can be seen.

If someone acts like they think I'm faking I just tell them to thank their lucky

stars. Then I think to myself, God

let that guy stub his toe so he'll know what my feet feel like most of the time.

LOL

God Bless,

Janet in Ca

[Guest guest]

Hi Skm,

It's not all bad. You can be treated and have a 99% normal life.

Whew! I feel like I'm on the RAH RAH wagon here today, but someone or

something has put out all kinds of bad mojo lately.

PA is a treatable disease. In many cases, folks, like ME live 99%

normal live with treatment. Yes, it can be frustrating finding a

treatment that works for you, and yes, some folks never find something

that brings them back as close to normal as I am, but it certainly

isn't all wheelchairs and walkers either.

Talk to your Rheumy about treatment. Methotrexate, Enbrel, Humira and

other drugs have helped many people get their lives back. You don't

need to give up.

Stay Well,

[Guest guest]

Hi and welcome to the group. we are here to try to keep abreast of this little

known form of Arthritis. For me it is a question of flare ups. There are good

days and so far a few bad days, but there is a constant amount of dull pain.I am

a male age 71 so I am a bit older so maybe your youth is on your side. Any way,

I wish you well. Pay attention to your Rheumy and you will be able to live a

good productive life. God Bless

Walt

[Guest guest]

Hi there,

I just saw this - sorry that I did not answer sooner.

My mom died of Primary biliary chirossis of the liver. It is a form of

chirossis (spelling) that you do not get from drinking. They don't

really know how you do get it.

They do think that it was triggered by two back to back Hepatitis bouts

that she had following surgery for carpal tunnel.

I just saw my Rheumy today and he did my 6 week blood work so

hopefully, everything will be okay.

Ella

--- In , " S. Zorzi "

<<Ella, what liver disease did your mom have? Mine died of primary

liver cancer. I also worried about the effect of these meds on my liver because

of that history. MTX raised my liver enzymes several times so eventually I had

to go off it and on one of the biologicals.>>

[Guest guest]

Hello there,

I live in the Portland area. We are thinking about moving in 17

months when our lease is up. It is just so hard to afford to live

here anymore. Especially as a single parent trying to raise a 4 year

old.

I have gotten to the point where I just tell people that I am fine.

Then if I am having a bad day, they can just deal with it.

I am thankful that I have a great boss. She can tell when I am not

feeling well and will tell me that it is okay to go home. Thankfully

she knows that I work my butt off so she cuts me some slack!

<<What part of Oregon do you live? I lived in County south

of Roseburg for 50 + years>>

[Guest guest]

It's that way with most everyone, I just slowed my life down and took the mtx on

my days off. b-12 helps and fish oil. But I didn't have any children living at

home. also I'm in the northwest and the weather here is damp which will cause

you to feel tired and sore. your rheumy is telling you straight. it takes time.

It will be gradual and there is no magic pill. But it will get better.....casey

[Guest guest]

Welcome Gretchen! Its nice to have you join us. I am here because

my son, age 10, has PsA. He has had p since he was about 3 and then

just last year he was dx with uveitis which brought us to a rheumy

and sure enough he had swollen joints. It seems like just when I

think things are going " smoothly " then something inevitably comes up

to change our course once again.

This group has been great for me just to know that there are others

going through this too.

and Grant/10/PsA/Uveitis

[Guest guest]

Hi Gretchen-

Your story is very much like mine. I suffered for a long time

without a diagnosis feeling like I must just be a whiner and very

lazy. Now that I am finally diagnosed and getting treatment my pain

and swelling are improving to some extent, but I still struggle

every day to feel any sense of energy or vitality.

My family and friends often feel rejected and excluded from my life

because it is rare that any event, no matter how fun or exciting,

really sounds better to me than going home a laying on my sofa until

it's time for bed!

Recently I read a lovely essay about what it is like to cope with

illness that I think makes sense to non-ill individuals. I sent

copies of it to my family to help them understand why I so rarely

have the energy for events. The following week, my sister called

while running her own errands to pick up things on my grocery list

for me. It was really nice.

The link to the .pdf is below

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

It's hard to stay upbeat in the face of such fatigue, but I believe I

will not feel this way forever, and every little improvement gives me

hope. I hope you find some support and some relief very soon!

Jill

[Guest guest]

Hi Gretchen

Welcome. I hope the group can be of use to you. By the way, nothing is certain

in this disease. It took them five years to diagnose mine and by then the joints

of my right hand were gone. Also, you said that you inherited this gene from

your father. According to my rhuemys, they tell me that this gene is inherited

only from your mothers side.

Good luck on your treatment. God Bless

Walt

[Guest guest]

It sounds like you have a supportive husband at least...

Cheer up ... You aren't alone ....

My husband is completely freaked out by the disease ...

It has caused a lot of greif in our marriage - but we are getting

through it ...

I was diagnosed by a rheumatologist at 18 years old ...

I woke up one day and my big toe looked like I had droppd a bowling

ball on it ...

I was so in the dark the past 10 years about how many people suffer

from this disease ... my mother has had psoriasis since 14 and she

developed the arthritis around age 30 ... other than her ...

I did not know anyone else that had it ...

For years I did a pretty good job of hiding the psoriasis ... but the

arthritis limited my ability to do things that normal 20-30 year old

do ...I felt like a 78 yr old woman ...

I took Viox until they took it off the market .. then Bextra ... then

Celebrex ... I was on Oruvail up until this Jan ...

My psoriasis had gotten so bad I could not stand it ... so I finally

made an appt with a derm (took me 7 mths to get into see her) and she

put me on Humira ...

It was a drastic change - I now have energy I have not had in yrs and

the pain is gone ... the psoriasis seems to be getting better too

How long have you been on Humira ?

[Guest guest]

I have been on Humira about a year now, I have maxed out my dosage

without complete relief, so now I am going to start Remicade, just

waiting on the insurance part of it. Although, I have Psoriasis and

PA. Humira does keep P in check, but doesn't give me enough relief

from PA.

[Guest guest]

Jetzsun,

I was exactly where you are one year ago today. Although I had scalp

psoriasis for several months, the arthritis set in quite suddenly and

severely. From the first day that my right knees " felt sore " to the day

that all my joints were excruciatingly painful and I couldn't even

walk/dress myself was a matter of about six weeks. But be patient, they

will find a treatment hopefully that will work for you. I literally was

immobile one week and three days later was able to get up and walk

(Enbrel was my miracle drug.) My condition is managed now, and after

reading your message, I could literally " feel the pain, " as I was there

one year ago today.

Hang in there, don't be afraid to ask all of us lots of questions.

[Guest guest]

Hi Simon and Hans

Welcome to the forum

and I hope you find it as friendly and useful in your quest to better

help like I have done so far.

take care

luv Dawnx

[Guest guest]

Hi Hans,

Welcome to the list- I hope you find the info you are looking for.

It is very common for thyroid problems to run in families- I'm third

generation with a nervous daughter!

Subject: Introducing myself

Sadly the family thyroid problems on my side (my wife has normal

function) seem to have been passed on to my younger daughter. She too

has a low temperature, though it varies greatly.

So that's my introduction.

Hans

Messages are not a substitute for professional medical advice. Always

consult with a suitably qualified practitioner before changing medication.

[Guest guest]

Thanks. It seems odd, though, that the thyroid problems run from over-

active to (perhaps) under-. The daughter in question is pregnant for

the 1st time, and I shall be scanning the messages to see what wisdom

there is on that topic.

Best wishes -- Hans

>

> Hi Hans,

> Welcome to the list- I hope you find the info you are looking

for.

> It is very common for thyroid problems to run in families- I'm third

> generation with a nervous daughter!

>

>