Re: I didn't stop supplements!

[Guest guest]

I didn't stop supplements (other than the day of the test, because

some supplements can thin the blood) and got an abnormal result

(complete lack of Complex I activity in the test they ran and some

FOD issues, in addition to other abnormal features). I saw Shoffner

and thought he was very knowledgeable, he spent a decent amount of

time talking about differential diagnoses (not just saying " mito or

nothing " ).

I was actually almost symptomless when I had my fresh muscle biopsy,

as I was pregnant and my symptoms virtually disappear during

pregnancy.

I would suggest being careful about stopping the supplements,

especially since you have such a busy itinerary. IMHO if the doctor

says not to stop them, go with his decision if possible. But I'm not

a medical doctor, just my opinions...

Take care,

RH

> Thanks for the post Ann Marie and the prayers...it means so much to

me!

> I have just spent the last two hours going over the old posts

> here...and I see where people who did not stop their supplements

got a

> normal result from the biopsy. I called Shofner's office and had

them

> ask him earlier if I should stop the supplements, but he said no.

>

> I have been really peaceful about this...as I tried to get into

> Shofner three years ago when they first suspected this but could

not

> do it. Then at the same time I have Jack (my 12 year old) on bed

rest

> for epididimitis for three weeks, (that would not respond to

> antibiotics); 10 days later he gets viral menigitis and is in the

> hospital...I get a call from Shofner's office saying they have an

> appointment for me! My cardiologist had sent him all my records

and

> asked for help. So, I was being peaceful that this was really in

> God's timing. My neuro believes I have clinical evidence of both

mito

> and multiple sclerosis...my cardiologist think the restrictive

> cardiomyopathy is due to the mito...so they will continue to take

care

> of me and warned me that the biopsy may be negative.

>

> Jack is not coming on this visit. My husband is coming...I need to

be

> able to ask hard questions about my childrens health and future and

I

> don't want to think about Jack listening to my worries.

>

> Now, there is not much I can do except stop the supplements now.

But

> I leave on Tuesday so I don't know if it will make much

difference.

>

> I am so glad to hear that you met and liked Shofner. I had heard

that

> he was very good and had a good way of talking to the patient.

>

> This has been such a long journey. I really hope that we can get

some

> answers that will help the whole family.

>

> Thanks for the input...I'm so glad there are others up late as well!

>

> Vivian

[Guest guest]

RH...

Thanks for the input...well at least I am having symptoms anyway,

I just pray that they find what they need to, inorder to help the

whole family.

Vivian

> > Thanks for the post Ann Marie and the prayers...it means so much

to

> me!

> > I have just spent the last two hours going over the old posts

> > here...and I see where people who did not stop their supplements

> got a

> > normal result from the biopsy. I called Shofner's office and

had

> them

> > ask him earlier if I should stop the supplements, but he said

no.

> >

> > I have been really peaceful about this...as I tried to get into

> > Shofner three years ago when they first suspected this but could

> not

> > do it. Then at the same time I have Jack (my 12 year old) on

bed

> rest

> > for epididimitis for three weeks, (that would not respond to

> > antibiotics); 10 days later he gets viral menigitis and is in

the

> > hospital...I get a call from Shofner's office saying they have

an

> > appointment for me! My cardiologist had sent him all my records

> and

> > asked for help. So, I was being peaceful that this was really

in

> > God's timing. My neuro believes I have clinical evidence of

both

> mito

> > and multiple sclerosis...my cardiologist think the restrictive

> > cardiomyopathy is due to the mito...so they will continue to

take

> care

> > of me and warned me that the biopsy may be negative.

> >

> > Jack is not coming on this visit. My husband is coming...I need

to

> be

> > able to ask hard questions about my childrens health and future

and

> I

> > don't want to think about Jack listening to my worries.

> >

> > Now, there is not much I can do except stop the supplements

now.

> But

> > I leave on Tuesday so I don't know if it will make much

> difference.

> >

> > I am so glad to hear that you met and liked Shofner. I had

heard

> that

> > he was very good and had a good way of talking to the patient.

> >

> > This has been such a long journey. I really hope that we can

get

> some

> > answers that will help the whole family.

> >

> > Thanks for the input...I'm so glad there are others up late as

well!

> >

> > Vivian

[Guest guest]

Good luck Vivian. I just got a call from Shoffner's office this past

week. Hope to get an appoinment in the near future. I already have a

mito dx by muscle biopsy, but I want him to do the genetics profile.

With regard to stopping the supplements, I would imagine they

shouldn't effect the biopsy whatsoever...simply, old mitochondrial

damage would still be present and although supplements MAY be able to

reduce damage, they wouldn't be able to completely make up for any

deficiencies. For example, if you had low carnitine, it would not be

likely that you could take enough of it to keep up with the loss. You

might be able to reduce symptoms through supplementation, but not cure

yourself. Hopefully, that makes sense. The two medications I can

think of in particular that have the potential to give false-positive

results are Prednisone and Plaquenil. I'm sure there are others, but

those come to mind. Prednisone (anti-inflammatory) and Plaquenil

(anti-malarial...used to treat auto-immune disease). Best wishes for

the trip !

bug

[Guest guest]

Bug,

Thanks for the input. Your explanation makes good sense. I am very

hopeful for the visit.

Vivian

> Good luck Vivian. I just got a call from Shoffner's office this

past

> week. Hope to get an appoinment in the near future. I already

have a

> mito dx by muscle biopsy, but I want him to do the genetics

profile.

> With regard to stopping the supplements, I would imagine they

> shouldn't effect the biopsy whatsoever...simply, old mitochondrial

> damage would still be present and although supplements MAY be able

to

> reduce damage, they wouldn't be able to completely make up for any

> deficiencies. For example, if you had low carnitine, it would not

be

> likely that you could take enough of it to keep up with the loss.

You

> might be able to reduce symptoms through supplementation, but not

cure

> yourself. Hopefully, that makes sense. The two medications I can

> think of in particular that have the potential to give false-

positive

> results are Prednisone and Plaquenil. I'm sure there are others,

but

> those come to mind. Prednisone (anti-inflammatory) and Plaquenil

> (anti-malarial...used to treat auto-immune disease). Best wishes

for

> the trip !

>

> bug