Does the cocktail alter biopsies that much?

[Guest guest]

Dr. Whiteman has told us several times that if Asenath or Zipporrah

hadn't been on the Carnitor and COQ10 that their biopsies might have

revealed their specific form of Mitochondrial Disorder. But because they

both were on them for more than 3 months prior to the biopsies (both of

them!) we had unspecific results indicating that it " could be/probably is "

Mito. Dr. Whiteman told us yesterday that Asenath's biopsy showed an

INCREASED amount of mitochondria and believes her body was responding to

" something " by attempting to produce more of the mitochondria. I think I

have heard someone talk about this issue here before. Anyway, the girls'

symptoms, labs, and biopsy indicators show Mito is the problem, but due to

the lack of specifics we were unable to know which complex or specific type

we are dealing with. Has anyone else been told this and had this problem

and does the fresh biopsy hold the same problem? We HAD to begin Asenath

when we did or she surely would have died and Zipporrah had a stroke

affecting her entire left side just before we began her Carnitor and COQ10

so we don't regret beginning it, but it really makes me wonder what " could

have " shown up, you know?! Any comments on this topic welcome.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

[Guest guest]

Dr. Whiteman has told us several times that if Asenath or Zipporrah

hadn't been on the Carnitor and COQ10 that their biopsies might have

revealed their specific form of Mitochondrial Disorder. But because they

both were on them for more than 3 months prior to the biopsies (both of

them!) we had unspecific results indicating that it " could be/probably is "

Mito. Dr. Whiteman told us yesterday that Asenath's biopsy showed an

INCREASED amount of mitochondria and believes her body was responding to

" something " by attempting to produce more of the mitochondria. I think I

have heard someone talk about this issue here before. Anyway, the girls'

symptoms, labs, and biopsy indicators show Mito is the problem, but due to

the lack of specifics we were unable to know which complex or specific type

we are dealing with. Has anyone else been told this and had this problem

and does the fresh biopsy hold the same problem? We HAD to begin Asenath

when we did or she surely would have died and Zipporrah had a stroke

affecting her entire left side just before we began her Carnitor and COQ10

so we don't regret beginning it, but it really makes me wonder what " could

have " shown up, you know?! Any comments on this topic welcome.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

[Guest guest]

From what I have been told, by Dr. Cohen, the cocktail does not make any new mitochondria or does it "heal" mutated cells, the supplements only help the mitochondria function better. In essence the cocktail only seems to put a band-aid on the problem, and does not fix anything. I'm not sure if the cocktail does affect the biopsy or not, though.

Grace was on Carnitor for at least 6 months before the biopsy, and they still got alot of info from hers, still a non specific type though. I don't really want to think about it if the cocktail was helping pathologically, because her report was really bad. I do know the cocktail has helped her physically though, and that is what counts.

Best wishes

Find just what you're after with the new, more precise MSN Search - try it now!

[Guest guest]

From what I have been told, by Dr. Cohen, the cocktail does not make any new mitochondria or does it "heal" mutated cells, the supplements only help the mitochondria function better. In essence the cocktail only seems to put a band-aid on the problem, and does not fix anything. I'm not sure if the cocktail does affect the biopsy or not, though.

Grace was on Carnitor for at least 6 months before the biopsy, and they still got alot of info from hers, still a non specific type though. I don't really want to think about it if the cocktail was helping pathologically, because her report was really bad. I do know the cocktail has helped her physically though, and that is what counts.

Best wishes

Find just what you're after with the new, more precise MSN Search - try it now!

[Guest guest]

Hi Darla,

I know that Dr. Parikh has stated that he wants to wait until after a biopsy is done to start the cocktail, and since it is so mild in her we will wait. He has already sent the treatment protocol, but it is on hold for the biopsy. Collin had similar findings with his muscle biopsy, it was frozen instead of fresh, and revealed staining of the mitochondria that shouldn't have, and non-specific mitochondrial stuff, but we don't know which type. I don't remember if he was already taking CoQ10 or not. It seems like he was. I will have to look at records for that.

Take care, JoniDarla Klein wrote:

Dr. Whiteman has told us several times that if Asenath or Zipporrah hadn't been on the Carnitor and COQ10 that their biopsies might have revealed their specific form of Mitochondrial Disorder. But because they both were on them for more than 3 months prior to the biopsies (both of them!) we had unspecific results indicating that it "could be/probably is" Mito. Dr. Whiteman told us yesterday that Asenath's biopsy showed an INCREASED amount of mitochondria and believes her body was responding to "something" by attempting to produce more of the mitochondria. I think I have heard someone talk about this issue here before. Anyway, the girls' symptoms, labs, and biopsy indicators show Mito is the problem, but due to the lack of specifics we were unable to know which complex or specific type we

are dealing with. Has anyone else been told this and had this problem and does the fresh biopsy hold the same problem? We HAD to begin Asenath when we did or she surely would have died and Zipporrah had a stroke affecting her entire left side just before we began her Carnitor and COQ10 so we don't regret beginning it, but it really makes me wonder what "could have" shown up, you know?! Any comments on this topic welcome. :)See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see a photo look into what Mito looks likeDarla: mommy toAsenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting, bladder issues, wheelchair for distances, eye issues, autistic behaviors, gastric emptying issues...Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD, dysphasia, 100% G-tube fed, speech delays,

extreme fatigue, excessive phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency, ...Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), & Marquis (3), Joey & (12 months) (some with Mito symptoms) Please contact mito-owner with any problems or questions. __________________________________________________

[Guest guest]

Hi Darla,

I know that Dr. Parikh has stated that he wants to wait until after a biopsy is done to start the cocktail, and since it is so mild in her we will wait. He has already sent the treatment protocol, but it is on hold for the biopsy. Collin had similar findings with his muscle biopsy, it was frozen instead of fresh, and revealed staining of the mitochondria that shouldn't have, and non-specific mitochondrial stuff, but we don't know which type. I don't remember if he was already taking CoQ10 or not. It seems like he was. I will have to look at records for that.

Take care, JoniDarla Klein wrote:

Dr. Whiteman has told us several times that if Asenath or Zipporrah hadn't been on the Carnitor and COQ10 that their biopsies might have revealed their specific form of Mitochondrial Disorder. But because they both were on them for more than 3 months prior to the biopsies (both of them!) we had unspecific results indicating that it "could be/probably is" Mito. Dr. Whiteman told us yesterday that Asenath's biopsy showed an INCREASED amount of mitochondria and believes her body was responding to "something" by attempting to produce more of the mitochondria. I think I have heard someone talk about this issue here before. Anyway, the girls' symptoms, labs, and biopsy indicators show Mito is the problem, but due to the lack of specifics we were unable to know which complex or specific type we

are dealing with. Has anyone else been told this and had this problem and does the fresh biopsy hold the same problem? We HAD to begin Asenath when we did or she surely would have died and Zipporrah had a stroke affecting her entire left side just before we began her Carnitor and COQ10 so we don't regret beginning it, but it really makes me wonder what "could have" shown up, you know?! Any comments on this topic welcome. :)See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see a photo look into what Mito looks likeDarla: mommy toAsenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting, bladder issues, wheelchair for distances, eye issues, autistic behaviors, gastric emptying issues...Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD, dysphasia, 100% G-tube fed, speech delays,

extreme fatigue, excessive phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency, ...Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), & Marquis (3), Joey & (12 months) (some with Mito symptoms) Please contact mito-owner with any problems or questions. __________________________________________________

[Guest guest]

I think that you have medicine that you know will

treat the symptoms they have. We are in the same boat

with all the kids and my wife, not knowing the exact

problem. Where there are no 'ideal' specific

treatments for each type of mito, I don't fret over

not knowing.

Rod

--- Darla Klein wrote:

> Dr. Whiteman has told us several times that if

> Asenath or Zipporrah

> hadn't been on the Carnitor and COQ10 that their

> biopsies might have

> revealed their specific form of Mitochondrial

> Disorder. But because they

> both were on them for more than 3 months prior to

> the biopsies (both of

> them!) we had unspecific results indicating that it

> " could be/probably is "

> Mito. Dr. Whiteman told us yesterday that Asenath's

> biopsy showed an

> INCREASED amount of mitochondria and believes her

> body was responding to

> " something " by attempting to produce more of the

> mitochondria. I think I

> have heard someone talk about this issue here

> before. Anyway, the girls'

> symptoms, labs, and biopsy indicators show Mito is

> the problem, but due to

> the lack of specifics we were unable to know which

> complex or specific type

> we are dealing with. Has anyone else been told this

> and had this problem

> and does the fresh biopsy hold the same problem? We

> HAD to begin Asenath

> when we did or she surely would have died and

> Zipporrah had a stroke

> affecting her entire left side just before we began

> her Carnitor and COQ10

> so we don't regret beginning it, but it really makes

> me wonder what " could

> have " shown up, you know?! Any comments on this

> topic welcome.

>

> See www.caringbridge.org/ia/mitomomof9 and

> www.heartbeatsformito.org to see

> a photo look into what Mito looks like

> Darla: mommy to

> Asenath (4) Mito, CNS Vasculitis, strokes,

> migraines, seizures, G-tube,

> hypotonicity, disautonomy, SID, global delays,

> asthma, cyclic vomiting,

> bladder issues, wheelchair for distances, eye

> issues, autistic behaviors,

> gastric emptying issues...

> Zipporrah (14 months) Mito, strokes, neuro-motor

> planning dys., SID, GERD,

> dysphasia, 100% G-tube fed, speech delays, extreme

> fatigue, excessive

> phlegm, asthma, trach issues, aberrant subclavian

> artery, disautonomy,

> hypertonicity, migraines, possible seizures, dumping

> syndrome, iron

> deficiency, ...

> Luke (16), Leah (14), Rachael (13), Isaac (10),

> Tirzah (8), Kezia (4), &

> Marquis (3), Joey & (12 months) (some with

> Mito symptoms)

>

=====

************************************

" The kids are not mine, they are God's and I have them on loan.

There are some days I want to trade up, but my credit is really bad. "

-Donna Thorell

__________________________________________________

[Guest guest]

I think that you have medicine that you know will

treat the symptoms they have. We are in the same boat

with all the kids and my wife, not knowing the exact

problem. Where there are no 'ideal' specific

treatments for each type of mito, I don't fret over

not knowing.

Rod

--- Darla Klein wrote:

> Dr. Whiteman has told us several times that if

> Asenath or Zipporrah

> hadn't been on the Carnitor and COQ10 that their

> biopsies might have

> revealed their specific form of Mitochondrial

> Disorder. But because they

> both were on them for more than 3 months prior to

> the biopsies (both of

> them!) we had unspecific results indicating that it

> " could be/probably is "

> Mito. Dr. Whiteman told us yesterday that Asenath's

> biopsy showed an

> INCREASED amount of mitochondria and believes her

> body was responding to

> " something " by attempting to produce more of the

> mitochondria. I think I

> have heard someone talk about this issue here

> before. Anyway, the girls'

> symptoms, labs, and biopsy indicators show Mito is

> the problem, but due to

> the lack of specifics we were unable to know which

> complex or specific type

> we are dealing with. Has anyone else been told this

> and had this problem

> and does the fresh biopsy hold the same problem? We

> HAD to begin Asenath

> when we did or she surely would have died and

> Zipporrah had a stroke

> affecting her entire left side just before we began

> her Carnitor and COQ10

> so we don't regret beginning it, but it really makes

> me wonder what " could

> have " shown up, you know?! Any comments on this

> topic welcome.

>

> See www.caringbridge.org/ia/mitomomof9 and

> www.heartbeatsformito.org to see

> a photo look into what Mito looks like

> Darla: mommy to

> Asenath (4) Mito, CNS Vasculitis, strokes,

> migraines, seizures, G-tube,

> hypotonicity, disautonomy, SID, global delays,

> asthma, cyclic vomiting,

> bladder issues, wheelchair for distances, eye

> issues, autistic behaviors,

> gastric emptying issues...

> Zipporrah (14 months) Mito, strokes, neuro-motor

> planning dys., SID, GERD,

> dysphasia, 100% G-tube fed, speech delays, extreme

> fatigue, excessive

> phlegm, asthma, trach issues, aberrant subclavian

> artery, disautonomy,

> hypertonicity, migraines, possible seizures, dumping

> syndrome, iron

> deficiency, ...

> Luke (16), Leah (14), Rachael (13), Isaac (10),

> Tirzah (8), Kezia (4), &

> Marquis (3), Joey & (12 months) (some with

> Mito symptoms)

>

=====

************************************

" The kids are not mine, they are God's and I have them on loan.

There are some days I want to trade up, but my credit is really bad. "

-Donna Thorell

__________________________________________________