Re: Outdoors/ Interesting subject

[Guest guest]

Hi

I always thought that my own total lack of tolerance of sunlight was

partly to do with my general intolerance to bright light-as related

to the sensitivity of my eyes- although come to think of it,

sunglasses dont make it any more tolerable.

And I alway thought that my intolerance to heat had got something to

do with the malfunction of the hypothalamus too, I always have had

very poor body temperature control ever since I have had this illness.

I too used to be a very outdoorsy hillwalking horseriding kind of

person, now I avoid the heat and the sunshine like some kind of

vampire lol.

I usually get seriously overheated at least three times a day even in

midwinter; my hair gets soaking wet with perspiration;

I have had electric fans fitted in every room in my house and I live

in a very moderate weather area, Britain is not very famous for its

searing heat and blazing sunshine eh?

I usually get hypothermia several times a week too, I get frozen to

the bone and nothing seems to warm me up; I have to drink hot liquids

and use layers of blankets and hot wheatbags to raise my body

temperature back to normal, no matter if it is 80 degrees in the room.

These symptoms are very normal and ordinary for me, my GP says there

is nothing she can do to help so I just live with it, what choice do

I have?

I also have problems with chronic insomnia, and I was led to

understand that the Hypothalamus centre in the brain is responsible

for our body thermostat, our sleep cycle and our appetite. I am sure

there are other symptoms too that are symptoms of malfunction of the

hypothalamus that I have as well, that I cant remember right now

because of my brain fog?

I have never been tested for candida because I am British; and UK

doctors dont take Candida overgrowth any more seriously than they do

Lyme.

Do you ladies suspect that this symptom might be an indication of a

likelihood of candida overgrowth then?

I think this is really interesting...

funny the things we dont think to mention

- then it turns out that quite a few of us are getting similar

symptoms?

best wishes

-- In , " Dawn Munn " <dawnmunn@...>

wrote:

>

> Hmm, I was just diagnosed with systemic candida....

>

> -Dawn On May 16, 2006, at 8:36 PM, Dawn Munn wrote:> > > Hi Kathy

and Sara,> >> > Okay, so maybe I am coming in from way out in left

field on this > > one, but.... Sara, isn't it true that you also

have chlamydia > > pneumoniae (I think I remember you mentioning it

before) and Kathy, > > you suspect you do. I know that I do. Is

there any possible > > connection to that and this weird sun thing?>

> I don't know if I have chlamydia yet. I do, however, have an

ongoing > candida circus that's usually controlled but never

conquered.> > Sara

>

>

>

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us

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>

[Guest guest]

Hi ,

Your mention of sunglasses brought this topic to my attention. I've

always been sensitive to bright light ( " sunlight " ?), I guess. And I

long ago dumped my sunglasses as not being helpful at all. I always

squint my eyes when I'm outside, even if it's a cloudy, overcast

day. I guess, I never thought about this all that much, though,

because I've been like this for as long as I can remember.

I am sun and heat sensitive too, now, and react to summer sun during

the " high hours " of the day, say 10 am to 4 pm. This started in the

70s, and I thought subsequently that it was connected to prolonged

use of amitriptyline. But I haven't taken that since the late 90s,

now, and I'm even more sensitive to the high sun (so I guess there's

no amitriptyline connection). I get flu symptoms for up to 2 or 3

days and if I'm in direct sunlight for more than 15-20 minutes or so,

I start breaking out into little pustules of pus (but only on my left

arm and hand...go figure!).

I don't seem to have the overheating when inside problem as you do,

though. But I do frequently have bad chilling. One day last week, I

noted that the outside temperature here, where I am in Illinois, was

74F, and I was frozen to the bone, in utter total pain, and resorted

to bundling up like an Eskimo and going to bed (weeping like a

pathetic infant and having only the kitties to commiserate with me).

I thoroughly relate to your statement about living like a vmapire!

Me too! (I wonder if the kids drawn to Goth now while they're young

will be the people who end up with CFS or ME when they get older!)

Since I'm an American with no health insurance, I haven't been tested

for much of anything, including candida. I assume I have a systemic

fungal infection, though, largely because of a couple of fungal

toenails and fingernails (which I also attribute to bad treatment by

my GP in not diagnosing my hypothyroidism for months and months, in

about 1989-1990). I'm trying to treat the systemic fungal infection

by limiting diet and using essential oil of oregano several times per

day.

All in all, I am fumbling in the dark here, but I've also been drawn

to understanding the hypothalamus lately. Oh...I also have

disjointed sleep patterns and insomnia, too, and I try to combat and

regulate by using melatonin.

Hang in there, !

in Champaign IL

>

> Hi

>

> I always thought that my own total lack of tolerance of sunlight

was

> partly to do with my general intolerance to bright light-as related

> to the sensitivity of my eyes- although come to think of it,

> sunglasses dont make it any more tolerable.

>

> And I alway thought that my intolerance to heat had got something

to

> do with the malfunction of the hypothalamus too, I always have had

> very poor body temperature control ever since I have had this

illness.

>

> I too used to be a very outdoorsy hillwalking horseriding kind of

> person, now I avoid the heat and the sunshine like some kind of

> vampire lol.

>

> I usually get seriously overheated at least three times a day even

in

> midwinter; my hair gets soaking wet with perspiration;

> I have had electric fans fitted in every room in my house and I

live

> in a very moderate weather area, Britain is not very famous for its

> searing heat and blazing sunshine eh?

>

> I usually get hypothermia several times a week too, I get frozen

to

> the bone and nothing seems to warm me up; I have to drink hot

liquids

> and use layers of blankets and hot wheatbags to raise my body

> temperature back to normal, no matter if it is 80 degrees in the

room.

>

> These symptoms are very normal and ordinary for me, my GP says

there

> is nothing she can do to help so I just live with it, what choice

do

> I have?

>

> I also have problems with chronic insomnia, and I was led to

> understand that the Hypothalamus centre in the brain is responsible

> for our body thermostat, our sleep cycle and our appetite. I am

sure

> there are other symptoms too that are symptoms of malfunction of

the

> hypothalamus that I have as well, that I cant remember right now

> because of my brain fog?

>

> I have never been tested for candida because I am British; and UK

> doctors dont take Candida overgrowth any more seriously than they

do

> Lyme.

>

> Do you ladies suspect that this symptom might be an indication of a

> likelihood of candida overgrowth then?

>

> I think this is really interesting...

> funny the things we dont think to mention

> - then it turns out that quite a few of us are getting similar

> symptoms?

>

> best wishes

>

[Guest guest]

On May 17, 2006, at 4:14 AM, wrote:

> I always thought that my own total lack of tolerance of sunlight was

> partly to do with my general intolerance to bright light-as related

> to the sensitivity of my eyes- although come to think of it,

> sunglasses dont make it any more tolerable.

: Have you tried a hypothalamus booster, like ProBoost?

I'm still recovering from my gardening Monday -- full-out crashed

yesterday, today quite some better. Since you raised this, I think

I'll try doubling up on ProBoost today and see if it helps. I've been

a little casual about taking my daily dose the last couple weeks;

perhaps that contributed.

> Do you ladies suspect that this symptom might be an indication of a

> likelihood of candida overgrowth then?

Another interesting hypothesis. Usually bread yeasts like warm,

*dark* places; not sure why extra sunshine would make them overgrow.

But I'm supposed to pick up more diflucan today anyway, and will take

a double shot when I get it. I've been sort of yeasty the past 3-4

weeks, but I think that was due to an unusually wheat-rich diet and

final exam stress.

Sara

[Guest guest]

-Hi ,

thanks for your suggestions, I think Proboost will be great if it

helps the hypothalamus to work better.

Do you know what it does, how it helps to regulate the hypothalamus?

wow I would love it if I could get my body temperature under control;

sometimes it actually gets me down more than the pain!

I hope you start to feel a bit better soon- I used to love gardening

myself but I darent try in my condition I would probably be laid up

for a fortnight!

I really dont know anything about candida, , I only asked

because it was a vague impression I had got from reading the other

posts.

do you get diflucan on prescription from your doctor?

my best wishes

yvonne

- In , Mercuria <mercuria@...> wrote:

>

>

> On May 17, 2006, at 4:14 AM, wrote:

>

> > I always thought that my own total lack of tolerance of sunlight

was

> > partly to do with my general intolerance to bright light-as

related

> > to the sensitivity of my eyes- although come to think of it,

> > sunglasses dont make it any more tolerable.

>

> : Have you tried a hypothalamus booster, like ProBoost?

>

> I'm still recovering from my gardening Monday -- full-out crashed

> yesterday, today quite some better. Since you raised this, I think

> I'll try doubling up on ProBoost today and see if it helps. I've

been

> a little casual about taking my daily dose the last couple weeks;

> perhaps that contributed.

>

> > Do you ladies suspect that this symptom might be an indication of

a

> > likelihood of candida overgrowth then?

>

> Another interesting hypothesis. Usually bread yeasts like warm,

> *dark* places; not sure why extra sunshine would make them

overgrow.

> But I'm supposed to pick up more diflucan today anyway, and will

take

> a double shot when I get it. I've been sort of yeasty the past 3-4

> weeks, but I think that was due to an unusually wheat-rich diet

and

> final exam stress.

>

>

> Sara

>

[Guest guest]

On May 17, 2006, at 11:44 AM, wrote:

> Do you know what it does, how it helps to regulate the hypothalamus?

It's actual thymic protein, which helps either support the gland or

give you what it's not making, one or the other. It was originally

developed for AIDS patients and other immune-compromised patients

whose thymuses were just gone.

You can get it off the Web without a prescription.

> I hope you start to feel a bit better soon- I used to love gardening

> myself but I darent try in my condition I would probably be laid up

> for a fortnight!

I've been pushing glutathione, and am considerably better today. Not

well, not close -- but I'm not sleeping the day away, and may

actually leave the house later.

>

> I really dont know anything about candida, , I only asked

> because it was a vague impression I had got from reading the other

> posts.

> do you get diflucan on prescription from your doctor?

Yes. He gives me 30 pills a year -- 10 pills, 3 refills -- so I don't

have to bug him constantly and always have some on hand. I generally

take two or three, spaced 48 hours apart at bedtime (in case they

make me a little sleepy), and it knocks the candida pretty good for

3-4 months, unless I accidentally eat something especially yeasty.

Sara

>

[Guest guest]

Hi Sara,

Correct me if I am wrong, but I think the yeast is more dependent on a warm,

*moist* environment, than on a warm, *dark*, one. I believe that in nature,

often, the dark places tend to be warm, hence the connection. So, in my

opinion, if going out in the heat might make things inside your warm, moist, and

dark (not saying you are dark, just that inside your body is:~)) even

toastier.... Again, totally a hypothesis. I will be very interested in hearing

if your problem eases up with the Diflucan. I have had trouble with heat and

sunlight most of my life, so I am not sure if this is true for me. But I guess

I have no idea how long I have had this systemic candida.

-Dawn

Another interesting hypothesis. Usually bread yeasts like warm, > *dark*

places; not sure why extra sunshine would make them overgrow. > But I'm

supposed to pick up more diflucan today anyway, and will take > a double shot

when I get it. I've been sort of yeasty the past 3-4 > weeks, but I think that

was due to an unusually wheat-rich diet and > final exam stress.> > > Sara

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[Guest guest]

Hi ,

Excuse me for saying this, but have you considered getting a new GP? What you

are describing is NOT normal and you shouldn't have to live with it. That must

be just awful. I wonder about your thyroid too. I know that I had mine checked

soo many times and was always told it was normal, despite having symptoms of

hypothyroidism. Finally, a few months ago, the doctor at the FFC actually

diagnosed me. I am extremely sensitive to medicines and have not even been able

to get up to the daily dose (which I was supposed to double after 10 days, and

this is bioidentical), so I actually have to take it only every other day. I

notice that on the day that I take it, I have a lot less trouble regulating

temperature. My husband has even noticed it and commented (you know, the not

needing the windows open when everyone else is cold, or being piled under

blankets, dressed in sweats, when everyone else is in shorts?) Again, you may

be dealing with a problem that is not often treated in the UK. If that is the

case, I sure am sorry to hear that. Maybe you might be able to consider a trip

to the US? I know that the FFC offers an out of town package which only

requires you to be physically present for your first apt. I don't know if there

may be other facilities like that the would be an option. Or if maybe

financially that is an impossibility. Just thought I'd let you know that it is

an option. But either way, maybe you need a GP who is a little more

compassionate.

Take care,

DawnHi> > I always thought that my own total lack of tolerance of sunlight was >

partly to do with my general intolerance to bright light-as related > to the

sensitivity of my eyes- although come to think of it, > sunglasses dont make it

any more tolerable.> > And I alway thought that my intolerance to heat had got

something to > do with the malfunction of the hypothalamus too, I always have

had > very poor body temperature control ever since I have had this illness.> >

I too used to be a very outdoorsy hillwalking horseriding kind of > person, now

I avoid the heat and the sunshine like some kind of > vampire lol.> > I usually

get seriously overheated at least three times a day even in > midwinter; my hair

gets soaking wet with perspiration;> I have had electric fans fitted in every

room in my house and I live > in a very moderate weather area, Britain is not

very famous for its > searing heat and blazing sunshine eh?> > I usually get

hypothermia several times a week too, I get frozen to > the bone and nothing

seems to warm me up; I have to drink hot liquids > and use layers of blankets

and hot wheatbags to raise my body > temperature back to normal, no matter if it

is 80 degrees in the room.> > These symptoms are very normal and ordinary for

me, my GP says there > is nothing she can do to help so I just live with it,

what choice do > I have?> > I also have problems with chronic insomnia, and I

was led to > understand that the Hypothalamus centre in the brain is responsible

> for our body thermostat, our sleep cycle and our appetite. I am sure > there

are other symptoms too that are symptoms of malfunction of the > hypothalamus

that I have as well, that I cant remember right now > because of my brain fog?>

> I have never been tested for candida because I am British; and UK > doctors

dont take Candida overgrowth any more seriously than they do > Lyme.> > Do you

ladies suspect that this symptom might be an indication of a > likelihood of

candida overgrowth then?> > I think this is really interesting...> funny the

things we dont think to mention> - then it turns out that quite a few of us are

getting similar > symptoms?> > best wishes>

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[Guest guest]

Hi Dawn,

You are very kind, and I dont mind at all.

Unfortunately, generally, things here in the UK are a little bit

behind the times, I am afraid.

I agree, I know my GP definitely has her faults, but as far as UK

GP's go, she is fairly well informed and appears to be open to

discussion.

This is not normally the case over here, our doctors usually prefer

patients who dont know anything about our illnesses and dont ask

awkward questions; and they can be extremely rude if you 'step out of

line'.

I have spent four years educating her and I say 'better the devil you

know'.

You would not believe the views of the other doctors in my group

practice-I could not even bring myself to talk to any of them, let

alone put my health in their hands!

Just like the majority of UK doctors; they fondly adhere to our Prof

Simon Wesseleys view 'it is only psychosomatic'. That guy has a lot

of negative influence everywhere, but in the UK, he more or less

rules the roost.

I have had a number of problems with my GP and overcome some of

them, she has visited the CFS/ME centre in Yarmouth herself now, and

met the specialist there, this is the same guy who I see.

She still doesnt understand CFS/ME very well at all; one of the

major frustrations is that no matter how often I tell her I am NOT

TIRED; she cannot take it in, I try and drum it into her but then the

next time I talk to her she has forgotten and she tells me that I am

tired again!

but at least she is not as bad as the others, and she is holding

out 'on my side' against all of her colleagues who do not share her

view that CFS/ME is an organic physical illness..

So you can see where I am going now, and you will not be surprised to

hear that if UK doctors do not 'believe in' CFS/ME as physical, then

they do not believe in Lyme disease any more than they believe in

fairies at the bottom of your garden.

I know this must be hard to credit, but they all seem to think we

dont get many Lyme cases in the UK, just the odd one or two a year!

Also our British National Health service will only allow you to see

a GP if you are in their geographical area, I mean literally, living

just down the street, although they can refer you to specialists in

other areas.

I could see a private doctor if I had money or medical insurance, but

when I was well enough to work I was also naive enought to think that

the NHS- which is compulsory medical insurance- was there to take

care of me.

Now I know that is not its function, I am so skint after being ill

for ten years that I have no choice but to keep trying to persuade

these NHS doctors to help me because that is all that I can get.

They are only there to pay lip service and cover the governments

butt.

I have a telephone consultation coming up with my NHS CFS/ME

specialist in a few weeks time

( my nearest specialist is 80 miles away and the journey to his

surgery is too much for me);

and I fully intend to ask him outright

for tests for Lyme disease/borreliosis- it is right at the top of my

list,

just before my request for tests for candida overgrowth and PROPER

tests for mercury toxicity;

and I will ask for him to prescribe Melatonin, Gabapentin, SAMe, and

5HPT for my symptoms rather than the opiates and narcotics I have

been given before.

I suspect that these may be fairly reasonable requests elsewhere,

(but I know I could well be wrong about that, because obviously I am

housebound in the Uk and I cant tell how things are done in other

countries just from sitting here);

but here in the UK these are extremely radical requests, and I risk

being labelled as a troublemaker.

I dont think anyone normally dares to talk to their NHS doctor about

any of these things, and I would not be surprised if my specialist

swears at me, but he has a fairly good reputation and so I am going

to ask anyway.

I think he will probably refuse, but every person that asks for

better treatemtn will be one more chip in his armour, I hope.

I feel a bit like Oliver Twist, saying- 'can I have some more

please?'

I dont want to encourage them to go on pretending that their present

offers -of CBT and advice on pacing techniques as their sole

available'treatments'- are nearly good enough responses to this kind

of illness, do you know what I mean?

So I am going to cross right over the line and speak the unspoken,

and ask my specialist outright to address what very few doctors in

the UK will even entertain- if you like I will let you know how I get

on!

I expect that he will simply refuse to discuss any of it.

I risk upsetting him enormously, but I am going to ask anyway, so

wish me luck please?

best wishes

>

> Hi ,

>

> Excuse me for saying this, but have you considered getting a new

GP? What you are describing is NOT normal and you shouldn't have to

live with it. That must be just awful. I wonder about your thyroid

too. I know that I had mine checked soo many times and was always

told it was normal, despite having symptoms of hypothyroidism.

Finally, a few months ago, the doctor at the FFC actually diagnosed

me. I am extremely sensitive to medicines and have not even been

able to get up to the daily dose (which I was supposed to double

after 10 days, and this is bioidentical), so I actually have to take

it only every other day. I notice that on the day that I take it, I

have a lot less trouble regulating temperature. My husband has even

noticed it and commented (you know, the not needing the windows open

when everyone else is cold, or being piled under blankets, dressed in

sweats, when everyone else is in shorts?) Again, you may be dealing

with a problem that is not often treated in the UK. If that is the

case, I sure am sorry to hear that. Maybe you might be able to

consider a trip to the US? I know that the FFC offers an out of town

package which only requires you to be physically present for your

first apt. I don't know if there may be other facilities like that

the would be an option. Or if maybe financially that is an

impossibility. Just thought I'd let you know that it is an option.

But either way, maybe you need a GP who is a little more

compassionate.

>

> Take care,

> DawnHi> > I always thought that my own total lack of tolerance of

sunlight was > partly to do with my general intolerance to bright

light-as related > to the sensitivity of my eyes- although come to

think of it, > sunglasses dont make it any more tolerable.> > And I

alway thought that my intolerance to heat had got something to > do

with the malfunction of the hypothalamus too, I always have had >

very poor body temperature control ever since I have had this

illness.> > I too used to be a very outdoorsy hillwalking horseriding

kind of > person, now I avoid the heat and the sunshine like some

kind of > vampire lol.> > I usually get seriously overheated at least

three times a day even in > midwinter; my hair gets soaking wet with

perspiration;> I have had electric fans fitted in every room in my

house and I live > in a very moderate weather area, Britain is not

very famous for its > searing heat and blazing sunshine eh?> > I

usually get hypothermia several times a week too, I get frozen to >

the bone and nothing seems to warm me up; I have to drink hot liquids

> and use layers of blankets and hot wheatbags to raise my body >

temperature back to normal, no matter if it is 80 degrees in the

room.> > These symptoms are very normal and ordinary for me, my GP

says there > is nothing she can do to help so I just live with it,

what choice do > I have?> > I also have problems with chronic

insomnia, and I was led to > understand that the Hypothalamus centre

in the brain is responsible > for our body thermostat, our sleep

cycle and our appetite. I am sure > there are other symptoms too that

are symptoms of malfunction of the > hypothalamus that I have as

well, that I cant remember right now > because of my brain fog?> > I

have never been tested for candida because I am British; and UK >

doctors dont take Candida overgrowth any more seriously than they do

> Lyme.> > Do you ladies suspect that this symptom might be an

indication of a > likelihood of candida overgrowth then?> > I think

this is really interesting...> funny the things we dont think to

mention> - then it turns out that quite a few of us are getting

similar > symptoms?> > best wishes>

>

>

>

> Search on the go: Try Windows Live Search for Mobile beta

> http://www1.imagine-msn.com/minisites/mobile/Default.aspx?locale=en-

us

>

>

[Guest guest]

Hi ,

Yes, please do let me know how your phone call goes. That must be so

frustrating for you. Are you aware that some of the supplements you are

requesting (I know for sure, melatonin and gaba) are available in the US in our

local drug stores and grocery stores? And very cheap at that? I think I bought

my bottle of 120 tablets of melatonin for $3.50. I don't know what your customs

laws are, or if it is illegal for you to purchase it online, but if it is not, I

would suggest maybe you try that if you get slack from your specialist. I

understand what you mean about your GP now, and why you can't switch, but that

is unfortunate. I am beginning to realize just how blessed I am to have a

husband with a good job who is able to provide for me and my healthcare. I

think it is something I had previously taken for granted, but not anymore! And

also how blessed I am to have been born here in the US!

You made the comment about being labeled a troublemaker. I have often been

called a difficult patient because I am well informed and I expect my doctor's

to explain things to me and if they don't make sense, I won't do it. In fact, I

had a doctor drop me once because I requested a copy of my records. At the

time, it really hurt my feelings, now, I suspect she felt she had someting to

hide. I will admit there have been time times though that I have actually been

a difficult patient, like when I had my son. 28 hours of labor, then an

emergency c-section (and you know we don't do surgery well), then they come in

the next morning wanting to take my foley out (catheter-used to drain urine, so

you don't have to get out of bed every 10 minutes to pee). I told them no.

They didn't know what to do, they said I had to. I told them if they took it

out, I would stop drinking and that they better not touch me until they talked

to my doctor. She came in and told me the risks of leaving it in. I told her I

understood, but if she took it out, I would stop drinking. They left it in!

So, I will admit, at times, I have actually been a " difficult " patient. But,

usually, it is just because we are informed that we get that label, and that is

unfortunate.

I feel so frustrated for you! I sure do hope that your specialist listens to

you and is willing to help. And please do let me know how it goes.

Take care,

Dawn

> Hi Dawn,> > You are very kind, and I dont mind at all.> Unfortunately,

generally, things here in the UK are a little bit > behind the times, I am

afraid.> I agree, I know my GP definitely has her faults, but as far as UK >

GP's go, she is fairly well informed and appears to be open to > discussion.>

This is not normally the case over here, our doctors usually prefer > patients

who dont know anything about our illnesses and dont ask > awkward questions; and

they can be extremely rude if you 'step out of > line'.> I have spent four years

educating her and I say 'better the devil you > know'. > You would not believe

the views of the other doctors in my group > practice-I could not even bring

myself to talk to any of them, let > alone put my health in their hands!> Just

like the majority of UK doctors; they fondly adhere to our Prof > Simon

Wesseleys view 'it is only psychosomatic'. That guy has a lot > of negative

influence everywhere, but in the UK, he more or less > rules the roost.> > I

have had a number of problems with my GP and overcome some of > them, she has

visited the CFS/ME centre in Yarmouth herself now, and > met the specialist

there, this is the same guy who I see.> She still doesnt understand CFS/ME

very well at all; one of the > major frustrations is that no matter how often I

tell her I am NOT > TIRED; she cannot take it in, I try and drum it into her but

then the > next time I talk to her she has forgotten and she tells me that I am

> tired again!> but at least she is not as bad as the others, and she is holding

> out 'on my side' against all of her colleagues who do not share her > view

that CFS/ME is an organic physical illness..> > So you can see where I am going

now, and you will not be surprised to > hear that if UK doctors do not 'believe

in' CFS/ME as physical, then > they do not believe in Lyme disease any more than

they believe in > fairies at the bottom of your garden.> I know this must be

hard to credit, but they all seem to think we > dont get many Lyme cases in the

UK, just the odd one or two a year!> > Also our British National Health service

will only allow you to see > a GP if you are in their geographical area, I mean

literally, living > just down the street, although they can refer you to

specialists in > other areas.> > I could see a private doctor if I had money or

medical insurance, but > when I was well enough to work I was also naive enought

to think that > the NHS- which is compulsory medical insurance- was there to

take > care of me.> > Now I know that is not its function, I am so skint after

being ill > for ten years that I have no choice but to keep trying to persuade >

these NHS doctors to help me because that is all that I can get.> They are only

there to pay lip service and cover the governments > butt.> > I have a telephone

consultation coming up with my NHS CFS/ME > specialist in a few weeks time > (

my nearest specialist is 80 miles away and the journey to his > surgery is too

much for me);> and I fully intend to ask him outright > for tests for Lyme

disease/borreliosis- it is right at the top of my > list, > just before my

request for tests for candida overgrowth and PROPER > tests for mercury

toxicity;> and I will ask for him to prescribe Melatonin, Gabapentin, SAMe, and

> 5HPT for my symptoms rather than the opiates and narcotics I have > been given

before.> > I suspect that these may be fairly reasonable requests elsewhere, >

(but I know I could well be wrong about that, because obviously I am >

housebound in the Uk and I cant tell how things are done in other > countries

just from sitting here);> but here in the UK these are extremely radical

requests, and I risk > being labelled as a troublemaker.> > I dont think anyone

normally dares to talk to their NHS doctor about > any of these things, and I

would not be surprised if my specialist > swears at me, but he has a fairly good

reputation and so I am going > to ask anyway. > I think he will probably refuse,

but every person that asks for > better treatemtn will be one more chip in his

armour, I hope.> > I feel a bit like Oliver Twist, saying- 'can I have some

more > please?' > > I dont want to encourage them to go on pretending that

their present > offers -of CBT and advice on pacing techniques as their sole >

available'treatments'- are nearly good enough responses to this kind > of

illness, do you know what I mean?> > So I am going to cross right over the line

and speak the unspoken, > and ask my specialist outright to address what very

few doctors in > the UK will even entertain- if you like I will let you know how

I get > on!> > I expect that he will simply refuse to discuss any of it. > I

risk upsetting him enormously, but I am going to ask anyway, so > wish me luck

please?> > best wishes>

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[Guest guest]

Hi ,

I'm in the UK too, and on the same page as you re being grateful, (ok

only slightly!!) that although my GP isn't the brightest spark at least

she's willing to do some of the tests that are available here.

I could be wrong but I thought the only NHS test for Lyme was a standard

Western Blot?? Did you know your GP can arrange this? it gives lots of

false negatives as it relies on an active immune response which could be

compromised if you've been infected for years etc. If you test positive

it's clear cut, if you test negative, want to persue it and have £60

spare, email me and i have the details of a Doc who can ID borrelia via

a blood slide done at home.

> >

> > Hi ,

> >

> > Excuse me for saying this, but have you considered getting a new

> GP? What you are describing is NOT normal and you shouldn't have to

> live with it. That must be just awful. I wonder about your thyroid

> too. I know that I had mine checked soo many times and was always

> told it was normal, despite having symptoms of hypothyroidism.

> Finally, a few months ago, the doctor at the FFC actually diagnosed

> me. I am extremely sensitive to medicines and have not even been

> able to get up to the daily dose (which I was supposed to double

> after 10 days, and this is bioidentical), so I actually have to take

> it only every other day. I notice that on the day that I take it, I

> have a lot less trouble regulating temperature. My husband has even

> noticed it and commented (you know, the not needing the windows open

> when everyone else is cold, or being piled under blankets, dressed in

> sweats, when everyone else is in shorts?) Again, you may be dealing

> with a problem that is not often treated in the UK. If that is the

> case, I sure am sorry to hear that. Maybe you might be able to

> consider a trip to the US? I know that the FFC offers an out of town

> package which only requires you to be physically present for your

> first apt. I don't know if there may be other facilities like that

> the would be an option. Or if maybe financially that is an

> impossibility. Just thought I'd let you know that it is an option.

> But either way, maybe you need a GP who is a little more

> compassionate.

> >

> > Take care,

> > DawnHi> > I always thought that my own total lack of tolerance of

> sunlight was > partly to do with my general intolerance to bright

> light-as related > to the sensitivity of my eyes- although come to

> think of it, > sunglasses dont make it any more tolerable.> > And I

> alway thought that my intolerance to heat had got something to > do

> with the malfunction of the hypothalamus too, I always have had >

> very poor body temperature control ever since I have had this

> illness.> > I too used to be a very outdoorsy hillwalking horseriding

> kind of > person, now I avoid the heat and the sunshine like some

> kind of > vampire lol.> > I usually get seriously overheated at least

> three times a day even in > midwinter; my hair gets soaking wet with

> perspiration;> I have had electric fans fitted in every room in my

> house and I live > in a very moderate weather area, Britain is not

> very famous for its > searing heat and blazing sunshine eh?> > I

> usually get hypothermia several times a week too, I get frozen to >

> the bone and nothing seems to warm me up; I have to drink hot liquids

> > and use layers of blankets and hot wheatbags to raise my body >

> temperature back to normal, no matter if it is 80 degrees in the

> room.> > These symptoms are very normal and ordinary for me, my GP

> says there > is nothing she can do to help so I just live with it,

> what choice do > I have?> > I also have problems with chronic

> insomnia, and I was led to > understand that the Hypothalamus centre

> in the brain is responsible > for our body thermostat, our sleep

> cycle and our appetite. I am sure > there are other symptoms too that

> are symptoms of malfunction of the > hypothalamus that I have as

> well, that I cant remember right now > because of my brain fog?> > I

> have never been tested for candida because I am British; and UK >

> doctors dont take Candida overgrowth any more seriously than they do

> > Lyme.> > Do you ladies suspect that this symptom might be an

> indication of a > likelihood of candida overgrowth then?> > I think

> this is really interesting...> funny the things we dont think to

> mention> - then it turns out that quite a few of us are getting

> similar > symptoms?> > best wishes>

> >

> >

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