Re: Selective immunoglobulin M deficiency

[Guest guest]

Hey Robyn-

Congratulations. Seriously. Meaning in having a

diagnosis now that will help you get rid of chronic

infection. The plus side of getting that diagnosis is

that your doctors will be more likely to treat chronic

infections more aggressively, and therefore take a

load of stress off your immune systems. After some

time of reducing those triggers, you should see

improvement in your fibromyalgia too.

For fibromyalgia, the diet is also in order for

you - at least low allergy low carb low sugar. SSRIs

really help, as does clonazepam and some other meds.

I remember Dr Goldberg stating that low IgM (I don't

think he necessarily meant low enough to be considered

an IgM deficiency but I could be wrong) could be an

indicator of chronic low grade viral infection

(hearing here too?)... you could ask your doc

about this possibility and even see if he would

consider something like Valtrex or Famvir for a year

or so to see if it affects levels ... if there has

been any research. I don't know ... perhaps you could

find it in some reading. I think it had to do w/low

IgM being secondary to other illness.

HTH_

--- Robyn <rngcoggs@...> wrote:

> Is anyone familiar with this?

>

> I received this diagnosis (along with fibromyalgia)

> today from my

> rheumatologist, whom I went to see for a recurring

> strep and sinus

> infections.

>

> Right now, we're going to monitor it for a couple of

> months. He wants

> me to have a flu and pneumonia shot immediately and

> I'm supposed to

> call in right away if I have any symptoms of

> infection. We'll

> reevaulate in April to see if IVIG is warranted.

>

> I could find very little information on the net.

>

> TIA,

>

> Robyn

>

>

________________________________________________________________________________\

____

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know-it-all with Mobile. Try it now.

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[Guest guest]

Thanks, . Actually, I have EBV as well and have been taking famicylovir

for three months now, so it looks as if I'm on track. I'll ask about the SSRIs.

He has me on trazodone, which is a modified antidepressant. I've been taking it

for a couple of weeks and have seen a return in symptoms which were helped by

Elavil. I can't take Elavil now due to heart palpitations.

Anyway, it really makes you wonder about what's going on with our kids . . . I

meet more moms who have fibromyalgia, CFS, etc.

Thanks for the input. I'll follow up with him about the meds you mentioned,

especially if I'm not seeing improvements in my anxiety. Elavil was helping, but

trazodone wasn't. He increased the dosage, so we'll see if anything changes.

All the best,

Robyn

<thecolemans4@...> wrote:

Hey Robyn-

Congratulations. Seriously. Meaning in having a

diagnosis now that will help you get rid of chronic

infection. The plus side of getting that diagnosis is

that your doctors will be more likely to treat chronic

infections more aggressively, and therefore take a

load of stress off your immune systems. After some

time of reducing those triggers, you should see

improvement in your fibromyalgia too.

For fibromyalgia, the diet is also in order for

you - at least low allergy low carb low sugar. SSRIs

really help, as does clonazepam and some other meds.

I remember Dr Goldberg stating that low IgM (I don't

think he necessarily meant low enough to be considered

an IgM deficiency but I could be wrong) could be an

indicator of chronic low grade viral infection

(hearing here too?)... you could ask your doc

about this possibility and even see if he would

consider something like Valtrex or Famvir for a year

or so to see if it affects levels ... if there has

been any research. I don't know ... perhaps you could

find it in some reading. I think it had to do w/low

IgM being secondary to other illness.

HTH_

--- Robyn <rngcoggs@...> wrote:

> Is anyone familiar with this?

>

> I received this diagnosis (along with fibromyalgia)

> today from my

> rheumatologist, whom I went to see for a recurring

> strep and sinus

> infections.

>

> Right now, we're going to monitor it for a couple of

> months. He wants

> me to have a flu and pneumonia shot immediately and

> I'm supposed to

> call in right away if I have any symptoms of

> infection. We'll

> reevaulate in April to see if IVIG is warranted.

>

> I could find very little information on the net.

>

> TIA,

>

> Robyn

>

>

__________________________________________________________

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Good luck with it. You've read Dr G's papers

comparing CFS to autism haven't you?

The only thing that truly helped my anxiety (granted I

haven't tried them all this time around) was xanax -

but that can only be used up to like 18 months. I'm

on a super low dose but miss one day and I don't

function so well. It's time to change and it's been

suggested to try neurontin along w/an SSRI, so that's

my next try. Soon. When I get around to it. I

don't want to take it forever - and when I've been

well and over the PANDAS attack, I have no need for an

anti-anxiety med.

I've heard neurontin (spelling unsure) is working for

a lot of fibromyalgia and CFS patients, so I'm

curious.

Hope you get good relief soon! Sounds like you have a

good doc willing to try things ... that seems unheard

of to me.

TTYL-

--- Robyn & Greg Coggins <rngcoggs@...>

wrote:

> Thanks, . Actually, I have EBV as well and

> have been taking famicylovir for three months now,

> so it looks as if I'm on track. I'll ask about the

> SSRIs. He has me on trazodone, which is a modified

> antidepressant. I've been taking it for a couple of

> weeks and have seen a return in symptoms which were

> helped by Elavil. I can't take Elavil now due to

> heart palpitations.

>

> Anyway, it really makes you wonder about what's

> going on with our kids . . . I meet more moms who

> have fibromyalgia, CFS, etc.

>

> Thanks for the input. I'll follow up with him

> about the meds you mentioned, especially if I'm not

> seeing improvements in my anxiety. Elavil was

> helping, but trazodone wasn't. He increased the

> dosage, so we'll see if anything changes.

>

> All the best,

>

> Robyn

>

> <thecolemans4@...> wrote:

> Hey Robyn-

>

> Congratulations. Seriously. Meaning in having a

> diagnosis now that will help you get rid of chronic

> infection. The plus side of getting that diagnosis

> is

> that your doctors will be more likely to treat

> chronic

> infections more aggressively, and therefore take a

> load of stress off your immune systems. After some

> time of reducing those triggers, you should see

> improvement in your fibromyalgia too.

>

> For fibromyalgia, the diet is also in order for

> you - at least low allergy low carb low sugar. SSRIs

> really help, as does clonazepam and some other meds.

>

> I remember Dr Goldberg stating that low IgM (I don't

> think he necessarily meant low enough to be

> considered

> an IgM deficiency but I could be wrong) could be an

> indicator of chronic low grade viral infection

> (hearing here too?)... you could ask your doc

> about this possibility and even see if he would

> consider something like Valtrex or Famvir for a year

> or so to see if it affects levels ... if there has

> been any research. I don't know ... perhaps you

> could

> find it in some reading. I think it had to do w/low

> IgM being secondary to other illness.

>

> HTH_

>

>

> --- Robyn <rngcoggs@...> wrote:

>

> > Is anyone familiar with this?

> >

> > I received this diagnosis (along with

> fibromyalgia)

> > today from my

> > rheumatologist, whom I went to see for a recurring

> > strep and sinus

> > infections.

> >

> > Right now, we're going to monitor it for a couple

> of

> > months. He wants

> > me to have a flu and pneumonia shot immediately

> and

> > I'm supposed to

> > call in right away if I have any symptoms of

> > infection. We'll

> > reevaulate in April to see if IVIG is warranted.

> >

> > I could find very little information on the net.

> >

> > TIA,

> >

> > Robyn

> >

> >

>

>

__________________________________________________________

> Be a better friend, newshound, and

> know-it-all with Mobile. Try it now.

>

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

I actually bought his DVD and am watching it. He seems so ahead of his time.

When people hear " fibromyalgia " and " CFS, " I think there is a collective

" rolling of the eyes " because they view it as a psychiatric disorder. I have to

admit, I've wondered about it on occasion as well, until I listened to Dr. G. I

was explaining to my husband last night that most people have no idea of how

debilitating the constant achiness and fatigue can be and then when you do get

an opportunity to rest, you can't sleep. I miss being able to do things with my

kids like jump on the trampoline or go to the park. By the time, 2pm rolls

around, I'm done.

Thanks for all your insight and help. Noah sees Dr. G on Wednesday; we are

very anxious to review his tests results.

All the best,

Robyn

<thecolemans4@...> wrote:

Good luck with it. You've read Dr G's papers

comparing CFS to autism haven't you?

The only thing that truly helped my anxiety (granted I

haven't tried them all this time around) was xanax -

but that can only be used up to like 18 months. I'm

on a super low dose but miss one day and I don't

function so well. It's time to change and it's been

suggested to try neurontin along w/an SSRI, so that's

my next try. Soon. When I get around to it. I

don't want to take it forever - and when I've been

well and over the PANDAS attack, I have no need for an

anti-anxiety med.

I've heard neurontin (spelling unsure) is working for

a lot of fibromyalgia and CFS patients, so I'm

curious.

Hope you get good relief soon! Sounds like you have a

good doc willing to try things ... that seems unheard

of to me.

TTYL-

--- Robyn & Greg Coggins <rngcoggs@...>

wrote:

> Thanks, . Actually, I have EBV as well and

> have been taking famicylovir for three months now,

> so it looks as if I'm on track. I'll ask about the

> SSRIs. He has me on trazodone, which is a modified

> antidepressant. I've been taking it for a couple of

> weeks and have seen a return in symptoms which were

> helped by Elavil. I can't take Elavil now due to

> heart palpitations.

>

> Anyway, it really makes you wonder about what's

> going on with our kids . . . I meet more moms who

> have fibromyalgia, CFS, etc.

>

> Thanks for the input. I'll follow up with him

> about the meds you mentioned, especially if I'm not

> seeing improvements in my anxiety. Elavil was

> helping, but trazodone wasn't. He increased the

> dosage, so we'll see if anything changes.

>

> All the best,

>

> Robyn

>

> <thecolemans4@...> wrote:

> Hey Robyn-

>

> Congratulations. Seriously. Meaning in having a

> diagnosis now that will help you get rid of chronic

> infection. The plus side of getting that diagnosis

> is

> that your doctors will be more likely to treat

> chronic

> infections more aggressively, and therefore take a

> load of stress off your immune systems. After some

> time of reducing those triggers, you should see

> improvement in your fibromyalgia too.

>

> For fibromyalgia, the diet is also in order for

> you - at least low allergy low carb low sugar. SSRIs

> really help, as does clonazepam and some other meds.

>

> I remember Dr Goldberg stating that low IgM (I don't

> think he necessarily meant low enough to be

> considered

> an IgM deficiency but I could be wrong) could be an

> indicator of chronic low grade viral infection

> (hearing here too?)... you could ask your doc

> about this possibility and even see if he would

> consider something like Valtrex or Famvir for a year

> or so to see if it affects levels ... if there has

> been any research. I don't know ... perhaps you

> could

> find it in some reading. I think it had to do w/low

> IgM being secondary to other illness.

>

> HTH_

>

>

> --- Robyn <rngcoggs@...> wrote:

>

> > Is anyone familiar with this?

> >

> > I received this diagnosis (along with

> fibromyalgia)

> > today from my

> > rheumatologist, whom I went to see for a recurring

> > strep and sinus

> > infections.

> >

> > Right now, we're going to monitor it for a couple

> of

> > months. He wants

> > me to have a flu and pneumonia shot immediately

> and

> > I'm supposed to

> > call in right away if I have any symptoms of

> > infection. We'll

> > reevaulate in April to see if IVIG is warranted.

> >

> > I could find very little information on the net.

> >

> > TIA,

> >

> > Robyn

> >

> >

>

>

__________________________________________________________

> Be a better friend, newshound, and

> know-it-all with Mobile. Try it now.

>

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________________

Never miss a thing. Make your home page.

http://www./r/hs