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Night Sweats - recent experience and resolution

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As everyone knows, I've been in remission for some 6 years. Given

that there is a genetic coagulation defect and an occult infection

(that appears to have been passed down 4 generations), remission is

the correct answer.

Stress of various types could allow the infection to become active

again etc. Since I understand the model, I also keep a sharp eye out

for early indicators, cognitively -- there are several computer

based " IQ/Brain games out " . We use a Nitendo DS2 (a small computer

game unit ~ $110 in the stores) that has " Brain Academy " and " Brain

Age " available. For a 50+ to score at a brain of 20 years of age, and

a B+ (A+ is possible) is a way of periodically check for the quiet

decrease of cognitive ability due to coagulation build up.

Interestingly, both the other CFIDS folks in the house that have been

on 4000 IU/Vitamin D per day, are also now at 20 years of age and an

A! Which is in major agreement with the general changes of cognitive

issues that I've seen.

However, recently I have been running a minor nasal infection (i.e. a

little bit of a stuffed or running noise, very minor) which has gone

on for a while. And then I found myself starting to wake up in the

morning with a bit of night sweat. Ok, I said, time for a vitamin A

pulse (150000 IU/A for 3-4 days), tumeric, olive leaf etc for a week

and knock the infection back. Did it, no herx, and also no change in

the night sweats. Hmmm... Reasoning thru things, since the sweats

always occured at the end of the night, it suggests that the body is

detecting the infections (actually, the chemical produced by the

infection) after the body has quieted down -- but both the body and

the supplements appear to not be able to reach it....

Ding, fibrin deposits! -- So I proceeded to take the usual set of

enzyemes to address that (which I must admit, I had not taken any for

some 6+ months):

* bromelain

* lumbrokinease

* serrapetase

* nattokinease

And the sweats stopped that night (and this was several days ago --

they have not returned).

That's all --- just an observation that some may find helpful.

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Hi Ken and all,

Thanks for posting this information, which I'm now saving. I haven't

experienced night sweats, but I routinely have nasal problems

(postnasal drip) and especially at night, which does wake me up...so

I want to keep these things in mind if there's any change. Right now

guiafenesin seems to do the trick for me.

By the way, just a few days ago I upped my D to 4000 IU/day (from

3200 IU). Since I was beginning to feel better than I've felt in

about 30 or 40 years, I'm kinda wondering...if I keep this up will I

have to run out and get myself a jumprope and maybe a set of

jacks...? :)

And, mjh and Rich, I am getting even more feeling in my feet still

and they're also getting warmer than last reported. (Peripheral

neuropathy for 15 years.)

And regarding the " sound sleep " problem, I might be mistaken, but I

think the SAM-e I started six weeks ago or so is helping me with

that. I'm now up to 800 mg per day (in two 400-mg installments

before 3 pm).

Thanks for the help with my attempts to recapture life (who, me?

zowie! :) ),

in Champaign IL

> Ding, fibrin deposits! -- So I proceeded to take the usual set of

> enzyemes to address that (which I must admit, I had not taken any

for

> some 6+ months):

> * bromelain

> * lumbrokinease

> * serrapetase

> * nattokinease

> And the sweats stopped that night (and this was several days ago --

> they have not returned).

>

> That's all --- just an observation that some may find helpful.

>

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kAREN

Yes, it is the SAM-e, along with the other things you take to support it,

that is helping improve your sleep. SAM-e will also help your liver and your

joints.

Just keep it up...... a renewed 'you' is on the horizon!!!

mjh

" The Basil Book "

_http://foxhillfarm.us/FireBasil/_ (http://foxhillfarm.us/FireBasil/)

And, mjh and Rich, I am getting even more feeling in my feet still

and they're also getting warmer than last reported. (Peripheral

neuropathy for 15 years.)

And regarding the " sound sleep " problem, I might be mistaken, but I

think the SAM-e I started six weeks ago or so is helping me with

that. I'm now up to 800 mg per day (in two 400-mg installments

before 3 pm).

Thanks for the help with my attempts to recapture life (who, me?

zowie! :) ),

in Champaign IL

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Hi mjh,

Well, I dunno about that " renewal " biz. ly, I'm kinda hoping if

I see " her " on the horizon, I don't recognize her and just run right

past her. :)

I sure wish I understood the labeling on this Source Naturals SAMe

400 mg, though. It says " SAMe (S-adenosyl-L-methionine) 400 mg from

800 mg of SAMe disulfate tosylate. "

Does that " from 800 mg of " make a difference? The Nature Made brand,

for instance, doesn't say that. They're both enteric coated, and I

really can't tell any difference in them (except the Nature Made is

cheaper), but maybe I'm too inexperienced in telling one brand from

another still.

Does someone understand this and can offer an explanation?

Thanks ahead of time again,

>

> kAREN

>

> Yes, it is the SAM-e, along with the other things you take to

support it,

> that is helping improve your sleep. SAM-e will also help your

liver and your

> joints.

>

> Just keep it up...... a renewed 'you' is on the horizon!!!

>

> mjh

> " The Basil Book "

> _http://foxhillfarm.us/FireBasil/_

(http://foxhillfarm.us/FireBasil/)

>

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Hi Ken,

I'm interested in the coagulation issue. I had blood tests done in

October 2005, and my thrombin-antithrombin TAT was 46.3 (<4). Does

this sound right for someone with hypercoagulation issues, or is it

not that important?

Thank you,

Chris

>

> As everyone knows, I've been in remission for some 6 years. Given

> that there is a genetic coagulation defect and an occult infection

> (that appears to have been passed down 4 generations), remission is

> the correct answer.

>

> Stress of various types could allow the infection to become active

> again etc. Since I understand the model, I also keep a sharp eye out

> for early indicators, cognitively -- there are several computer

> based " IQ/Brain games out " . We use a Nitendo DS2 (a small computer

> game unit ~ $110 in the stores) that has " Brain Academy " and " Brain

> Age " available. For a 50+ to score at a brain of 20 years of age, and

> a B+ (A+ is possible) is a way of periodically check for the quiet

> decrease of cognitive ability due to coagulation build up.

> Interestingly, both the other CFIDS folks in the house that have been

> on 4000 IU/Vitamin D per day, are also now at 20 years of age and an

> A! Which is in major agreement with the general changes of cognitive

> issues that I've seen.

>

> However, recently I have been running a minor nasal infection (i.e. a

> little bit of a stuffed or running noise, very minor) which has gone

> on for a while. And then I found myself starting to wake up in the

> morning with a bit of night sweat. Ok, I said, time for a vitamin A

> pulse (150000 IU/A for 3-4 days), tumeric, olive leaf etc for a week

> and knock the infection back. Did it, no herx, and also no change in

> the night sweats. Hmmm... Reasoning thru things, since the sweats

> always occured at the end of the night, it suggests that the body is

> detecting the infections (actually, the chemical produced by the

> infection) after the body has quieted down -- but both the body and

> the supplements appear to not be able to reach it....

>

> Ding, fibrin deposits! -- So I proceeded to take the usual set of

> enzyemes to address that (which I must admit, I had not taken any for

> some 6+ months):

> * bromelain

> * lumbrokinease

> * serrapetase

> * nattokinease

> And the sweats stopped that night (and this was several days ago --

> they have not returned).

>

> That's all --- just an observation that some may find helpful.

>

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Hi , mjh and Rich,

Apologies for being a bit dense re this thread – I’ve been having huge

trouble with my mail and I clearly haven’t been in at the beginning of

these posts.

I have mega trouble with temperature, including night sweats at times,

and a problem with my legs being freezing whilst the top half of me is

boiling. What you are all saying about SAM-e interests me, and may

perhaps have some bearing on these particular problems of mine. Has

anyone any experience and could comment on this?

SAM-e is one of the few things I haven’t yet tried.

Rosie

Yes, it is the SAM-e, along with the other things you take to support

it,

that is helping improve your sleep. SAM-e will also help your liver and

your

joints.

Just keep it up...... a renewed 'you' is on the horizon!!!

mjh

" The Basil Book "

_http://foxhillfarm. <http://foxhillfarm.us/FireBasil/_> us/FireBasil/_

(http://foxhillfarm. <http://foxhillfarm.us/FireBasil/> us/FireBasil/)

And, mjh and Rich, I am getting even more feeling in my feet still

and they're also getting warmer than last reported. (Peripheral

neuropathy for 15 years.)

And regarding the " sound sleep " problem, I might be mistaken, but I

think the SAM-e I started six weeks ago or so is helping me with

that. I'm now up to 800 mg per day (in two 400-mg installments

before 3 pm).

Thanks for the help with my attempts to recapture life (who, me?

zowie! :) ),

in Champaign IL

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Hi Rosie. I remember your earlier description of your awful half-and-

half temperature problems! Yikes. I'm not sure I can help, but I'll

try.

I was having temperature plunges, but they were all over, not half-

and-half. I'd get cold all over and have to just pack it in and

bundle up in bed. It's much better now, but I associate the relief

more with the vitamin D3 I started taking.

I don't know why anything works or how it works in ways it may work.

I ended up " hitting it lucky " with the things I started to take.

So...it's hard for me to separate out which does what for me.

I also do take a big quantity of B vitamins, though. I've had

bilateral peripheral neuropathy of the feet (including cold) for 15

years that was only getting worse. I am now getting feeling back in

the feet and also more warmth. (No sweat socks in July -- wow!)

The trouble is...I don't know if it's the B vitamins or everything I

take working all together. So, it's hard for me to give you a nice

clean rule about this. Maybe someone else can help better with

delineating all this for us?

I can't tell if the SAMe is helping me in this regard. I only

started SAMe about six weeks ago. The other stuff -- D3 and B

vitamins -- I started six or more months ago.

Maybe in some circuitous way this can help? I hope so...

>

>

> Hi , mjh and Rich,

>

> Apologies for being a bit dense re this thread – I've been having

huge

> trouble with my mail and I clearly haven't been in at the beginning

of

> these posts.

>

> I have mega trouble with temperature, including night sweats at

times,

> and a problem with my legs being freezing whilst the top half of me

is

> boiling. What you are all saying about SAM-e interests me, and may

> perhaps have some bearing on these particular problems of mine. Has

> anyone any experience and could comment on this?

>

> SAM-e is one of the few things I haven't yet tried.

>

> Rosie

>

>

>

>

>

>

>

>

>

> Yes, it is the SAM-e, along with the other things you take to

support

> it,

> that is helping improve your sleep. SAM-e will also help your liver

and

> your

> joints.

>

> Just keep it up...... a renewed 'you' is on the horizon!!!

>

> mjh

> " The Basil Book "

> _http://foxhillfarm. <http://foxhillfarm.us/FireBasil/_>

us/FireBasil/_

> (http://foxhillfarm. <http://foxhillfarm.us/FireBasil/>

us/FireBasil/)

>

> And, mjh and Rich, I am getting even more feeling in my feet still

> and they're also getting warmer than last reported. (Peripheral

> neuropathy for 15 years.)

>

> And regarding the " sound sleep " problem, I might be mistaken, but I

> think the SAM-e I started six weeks ago or so is helping me with

> that. I'm now up to 800 mg per day (in two 400-mg installments

> before 3 pm).

>

> Thanks for the help with my attempts to recapture life (who, me?

> zowie! :) ),

>

>

> in Champaign IL

>

>

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Do you also take adequate Magnesium and fish oil? What about MSM?

All the things you take work synergistically..... one, like SAM-e, may help

in certain ways, but the others help it work. It is really hard to isolate

just one thing in a protocol.

mjh

" The Basil Book "

_http://foxhillfarm.us/FireBasil/_ (http://foxhillfarm.us/FireBasil/)

I also do take a big quantity of B vitamins, though. I've had

bilateral peripheral neuropathy of the feet (including cold) for 15

years that was only getting worse. I am now getting feeling back in

the feet and also more warmth. (No sweat socks in July -- wow!)

The trouble is...I don't know if it's the B vitamins or everything I

take working all together. So, it's hard for me to give you a nice

clean rule about this. Maybe someone else can help better with

delineating all this for us?

I can't tell if the SAMe is helping me in this regard. I only

started SAMe about six weeks ago. The other stuff -- D3 and B

vitamins -- I started six or more months ago.

Maybe in some circuitous way this can help? I hope so...

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Hi ,

Yes this might help. I have alot of trouble tolerating supplements

and have tried D3 (which is a problem) but it may be I can find a

good/gentle B complex to add to my regime (such that it is). I will

google the SAM-e too and see if that gives me further clues.

Re your peripheral neuropathy.. can you tell me how it is expressed

in you? I'm wondering if the cold legs thing with me is something

akin to this, but without the pain. I find that heavy-weight/close

fitting jeans or trousres actually make my legs feel colder - so

there is definitely (it would seem to me) a nervous systme element to

what is going on.

Many thanks for your input,

Rosie.

> >

> >

> > Hi , mjh and Rich,

> >

> > Apologies for being a bit dense re this thread – I've been having

> huge

> > trouble with my mail and I clearly haven't been in at the

beginning

> of

> > these posts.

> >

> > I have mega trouble with temperature, including night sweats at

> times,

> > and a problem with my legs being freezing whilst the top half of

me

> is

> > boiling. What you are all saying about SAM-e interests me, and

may

> > perhaps have some bearing on these particular problems of mine.

Has

> > anyone any experience and could comment on this?

> >

> > SAM-e is one of the few things I haven't yet tried.

> >

> > Rosie

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > Yes, it is the SAM-e, along with the other things you take to

> support

> > it,

> > that is helping improve your sleep. SAM-e will also help your

liver

> and

> > your

> > joints.

> >

> > Just keep it up...... a renewed 'you' is on the horizon!!!

> >

> > mjh

> > " The Basil Book "

> > _http://foxhillfarm. <http://foxhillfarm.us/FireBasil/_>

> us/FireBasil/_

> > (http://foxhillfarm. <http://foxhillfarm.us/FireBasil/>

> us/FireBasil/)

> >

> > And, mjh and Rich, I am getting even more feeling in my feet

still

> > and they're also getting warmer than last reported. (Peripheral

> > neuropathy for 15 years.)

> >

> > And regarding the " sound sleep " problem, I might be mistaken, but

I

> > think the SAM-e I started six weeks ago or so is helping me with

> > that. I'm now up to 800 mg per day (in two 400-mg installments

> > before 3 pm).

> >

> > Thanks for the help with my attempts to recapture life (who, me?

> > zowie! :) ),

> >

> >

> > in Champaign IL

> >

> >

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> --- In , " Rosie " <rosiecox@...>

>> I have mega trouble with temperature, including night sweats at

> times,

>> and a problem with my legs being freezing whilst the top half of me

> is

>> boiling. What you are all saying about SAM-e interests me, and may

>> perhaps have some bearing on these particular problems of mine. Has

>> anyone any experience and could comment on this?

You don't say how old you are, Rosie, but if you're over 35 or so the

night sweats could be hormonal. It might be worthwhile to have an

endocrine panel run on your reproductive hormones, and look into

taking bioidentical hormones to replace. I know I only (and very

reliably) get night sweats when I don't get enough progesterone.

As for the foot-chills -- I get those, too. They're Reynaud's

syndrome, and indicative of an under-functioning adrenal. SAMe may

very well help with that.

Also: both sweats and chills can point to an underactive thyroid. The

thyroid controls body temp; if yours isn't working right (and it's

not working right in a majority of PWCs), you are likely to be cold

or hot at inappropriate times.

It sounds like you'd get a lot out of a visit or two with a good

endocrinologist.

Sara

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Hi Rosie. Was it the D3 that bothered you or the form it came in? I

had a lot of trouble taking zillions of cod liver oil capsules, but

the tablets (of D3, no vit A) with larger IU quantities are more

tolerable for me. I also didn't jump right in with a huge IU amount

to start with. Started very low (even when I was attempting with the

cod liver oil capsules) and worked up gradually to current 4000

IU/day (5 tablets of 800 IU; I think it also comes in 400 IU size

tablets).

Peripheral neuropathy manifested as creeping numbness originally

starting in both big toes, the left first, then gradually

encompassing the entire foot and going into the ankle and above.

Pain, pins and needles, numbness, cold. Occasional cramping that was

mysterious and made no sense to me. It felt like the insides of my

feet were experiencing what a person with cerebral palsy might.

I had ruptured one or more lumbar disks in early 1980, and every

doctor had always treated me as if my symptoms were from that

alone. " Give her painkillers and NSAIDs. " Because I believed them

all, I followed along with it and just got worse. The problems I was

having were only coincident with the ruptured disks, but were really

the result of vitamin and mineral deficiency. Score 1, for !

The first B I started with was a liquid B complex. Just the cheap-

cheap brand that's in Walmart -- Spring Valley. The first " squirt "

of that had such a dramatic effect on my facial relaxation, I kept it

up and " branched off " into the separate Bs as separate supplements

and sublingual B12 as well. Try to find the liquid B complex and

start with that, would be my advice for " tolerance. "

I hope this helps.

>

>

> Hi ,

>

> Yes this might help. I have alot of trouble tolerating supplements

> and have tried D3 (which is a problem) but it may be I can find a

> good/gentle B complex to add to my regime (such that it is). I

will

> google the SAM-e too and see if that gives me further clues.

>

> Re your peripheral neuropathy.. can you tell me how it is expressed

> in you? I'm wondering if the cold legs thing with me is something

> akin to this, but without the pain. I find that heavy-weight/close

> fitting jeans or trousres actually make my legs feel colder - so

> there is definitely (it would seem to me) a nervous systme element

to

> what is going on.

>

> Many thanks for your input,

>

> Rosie.

>

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Hi Sara,

Many thanks for the reply. I'm getting closer to 46 every day :-( but

have had all the endo checks done and have tried HRT twice (Mega bad

response) armour thyroid (despite normal TSH, T3 and T4 but couldn't

tolerate at all - gave me heart symptoms). Also have tried progesterone

cream - again felt much worse. I think peri-menopause might well be

exacerbating the underlying ME/cns problems, but do think it is likely

to be the 'pure' ME that is really at the bottom of it.

I'm interested in your mention that the SAM-e may help. As I mentioned,

it is one thing I haven't tried yet, so it's possible it may well help

if I can tolerate it. I am a patient of Dr Myhill here in the UK, and

see her on Monday week, so these are questions I can bring up with her

too.

I'm rather hoping my body will just get on with being properly

menopausal and then perhaps, in a few years, things might just ease up

all of their own volition (well at least I'm looking on the bright side

:-) ).

BW

Rosie

You don't say how old you are, Rosie, but if you're over 35 or so the

night sweats could be hormonal. It might be worthwhile to have an

endocrine panel run on your reproductive hormones, and look into

taking bioidentical hormones to replace. I know I only (and very

reliably) get night sweats when I don't get enough progesterone.

As for the foot-chills -- I get those, too. They're Reynaud's

syndrome, and indicative of an under-functioning adrenal. SAMe may

very well help with that.

Also: both sweats and chills can point to an underactive thyroid. The

thyroid controls body temp; if yours isn't working right (and it's

not working right in a majority of PWCs), you are likely to be cold

or hot at inappropriate times.

It sounds like you'd get a lot out of a visit or two with a good

endocrinologist.

Sara

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On Aug 26, 2006, at 5:35 AM, Rosie wrote:

>

> Hi Sara,

>

> Many thanks for the reply. I'm getting closer to 46 every day :-( but

> have had all the endo checks done and have tried HRT twice (Mega bad

> response) armour thyroid (despite normal TSH, T3 and T4 but couldn't

> tolerate at all - gave me heart symptoms). Also have tried

> progesterone

> cream - again felt much worse. I think peri-menopause might well be

> exacerbating the underlying ME/cns problems, but do think it is likely

> to be the 'pure' ME that is really at the bottom of it.

HRT is rapidly being left behind in the US, largely at the behest of

the National Institutes of Health, which decided a couple years ago

that the risks outweigh the benefits.

In the breach, and because of our Boomer value system, a lot of women

in their 40s and 50s now are using " natural " or " bioidentical " HRT.

This uses replacement hormones derived from plant extracts, which are

identical to those in our bodies (horse urine is far less so). It's

also compounded for us individually, after the doctor runs hormone

level tests to determine just how much we need. No one-size-fits-all

here.

Your bad reaction to progesterone cream suggests that you may be low

in estrogen. If it's been a while since you last had your estrogen

levels run -- say, more than a year -- it might be time to do them

again, and then discuss natural HRT with a doctor who understands it.

At 46, your levels are likely to start changing far more quickly than

they have in years past. And ME messes up the endocrine system, which

makes menopause hit us far harder than it does most women, which is

why so many of us find bioidentical HRT an incredible boon. FFC puts

it right at the top of their protocol for treating women in our age

group, because it can do so much so fast.

We also very typically have bad reactions to standard HRT, if that's

any consolation. You're not the first, by a long shot.

> I'm interested in your mention that the SAM-e may help. As I

> mentioned,

> it is one thing I haven't tried yet, so it's possible it may well help

> if I can tolerate it.

If you usually clear most prescription drugs easily, you'll probably

do OK with SAMe. It's those of us who have SNPs that interfere with

stuff like cortisone that can't handle it.

Appropos of not much, I also learned last night that St. 's Wort

(which I've been living on) inhibits the CYP3A4 liver enzyme -- the

one that is probably making it so hard for me to handle this stuff.

I'm doing a trial with DLPA this week, which requires 3A4 to

metabolize, so I took myself off SJW yesterday to " make room " for it.

It really seems to help. And it's not affecting my depression,

either, because DLPA also boosts serotonin slightly while really

pushing up norepinepherine and dopamine. So I'm feeling pretty good

anyway.

This stuff is soooo complicated....

Sara

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Hi ,

Unfortunately I have tried all sorts of D3 in different forms and from

different sources and at different strengths - but no joy. I can't

tolerate B12 singly either. But the B complex you talk of may be an

idea. I'm in the Uk so our nearest thing to Walmart is 'Asda' which was

taken over by the former company. I'll look and see if they do

something similar.

Your experience seems a bit different to mine in terms of the peripheral

neuropathy (not that I'm saying that that is my diagnosis). My legs

feel almost 'shocked' - that's the only way I can describe it. I do

think it is a nervous system thing however, and perhaps trying again to

go down the B complex route plus the SAM-e if I can tolerate it, might

help a bit.

Thanks for your input, much appreciated

Rosie

Hi Rosie. Was it the D3 that bothered you or the form it came in? I

had a lot of trouble taking zillions of cod liver oil capsules, but

the tablets (of D3, no vit A) with larger IU quantities are more

tolerable for me. I also didn't jump right in with a huge IU amount

to start with. Started very low (even when I was attempting with the

cod liver oil capsules) and worked up gradually to current 4000

IU/day (5 tablets of 800 IU; I think it also comes in 400 IU size

tablets).

Peripheral neuropathy manifested as creeping numbness originally

starting in both big toes, the left first, then gradually

encompassing the entire foot and going into the ankle and above.

Pain, pins and needles, numbness, cold. Occasional cramping that was

mysterious and made no sense to me. It felt like the insides of my

feet were experiencing what a person with cerebral palsy might.

I had ruptured one or more lumbar disks in early 1980, and every

doctor had always treated me as if my symptoms were from that

alone. " Give her painkillers and NSAIDs. " Because I believed them

all, I followed along with it and just got worse. The problems I was

having were only coincident with the ruptured disks, but were really

the result of vitamin and mineral deficiency. Score 1, for !

The first B I started with was a liquid B complex. Just the cheap-

cheap brand that's in Walmart -- Spring Valley. The first " squirt "

of that had such a dramatic effect on my facial relaxation, I kept it

up and " branched off " into the separate Bs as separate supplements

and sublingual B12 as well. Try to find the liquid B complex and

start with that, would be my advice for " tolerance. "

I hope this helps.

>

>

> Hi ,

>

> Yes this might help. I have alot of trouble tolerating supplements

> and have tried D3 (which is a problem) but it may be I can find a

> good/gentle B complex to add to my regime (such that it is). I

will

> google the SAM-e too and see if that gives me further clues.

>

> Re your peripheral neuropathy.. can you tell me how it is expressed

> in you? I'm wondering if the cold legs thing with me is something

> akin to this, but without the pain. I find that heavy-weight/close

> fitting jeans or trousres actually make my legs feel colder - so

> there is definitely (it would seem to me) a nervous systme element

to

> what is going on.

>

> Many thanks for your input,

>

> Rosie.

>

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