Laurie, working with Mito Docs [was 5HTP warning]

[Guest guest]

Hi Laurie,

Well that was a very interesting post. :-) When I said that doctors

have responded to low normals like they are normal and ignored

symptoms and didn't help me, I was speaking of Primary care docs or

GI docs and an occassional nutritionist that I have seen in the

past. But I have already been to the two top mito specialists in the

Boston area and I was specifically referring to them when I described

their responses to any vitamin/mineral blood work or supplement issue

too. The head of the Metabolic Disorder clinic told me to take Vit

A, C, E, a multi vitamin and the Carnitine and Qgel and she had no

other recomendations for me. The second doc I saw who is

specifically the Mito specialist in that department reviewed what the

previous doctor had done for tests and had nothing more to suggest.

Right now I am still being evaluated and have not had a muscle biopsy

yet. I don't know if that will change anything or not. Still, I get

a sense that the health care that you have available to you is above

and beyond what I have. I also have seen that the doctor I am

seeing, although he is a Mito specialist, is working in a hospital

that out of all the hospitals in the Boston area is probably the one

with the least funds. They are understaffed. He has way too many

patients too. So to do what you are suggesting to try to work with a

doctor in this situation sort of sounds like inventing the wheel to

me. :-) I recently had an MRI done, and it took me three weeks and

four phone calls to get the results.

I have had some vitamin level blood work done, some have been normal

and some have been low normal and they don't make suggestions. I

have very low vitamin D levels and nothing was suggested. I had 1/2

of my amino acid tests come back low twice and they thought it was

diet related, not enough protein. I just had them repeat them after

2 months of high protein foods so we can see if they are actually

really low or diet related. I had to initiate that, they didn't.

Aside from those specific low levels, I am not sure if everything

that should be tested has been done. Maybe in your case, you have

lots of abnormal results show up that give you enough information to

know what to address. In my particular case, right now my test

results are not giving a clear picture despite severe symptoms.

I also keep a list of supplements on my computer and I chart all the

supplements I take and the food I eat. I chart my sleep and how much

water I drink and how many sets of stairs I have gone up and any

unusual activity etc, etc... I am inconsistent with it as it is

often times too much for me to keep up with, as typing is something

that I have to limit and be careful of. When something is off, I try

to figure out what might have caused it. When I take supplements I

watch for changes, often times I can tolerate them at one time and

not at another.

I have yet to find a doctor that will work with me in that much

detail, so I am on my own, doing the best I can. Every time I see a

new doctor I hope that he will work with me closer to make things

easier and more productive but so far I have been disappointed. I

began being ill in 1979, so I have been at this a long time. I am on

my own, not from lack of trying to find a doctor, a diagnosis or some

treatment. I hope that the current doctor I have will work out the

way you are suggesting.

I will think about what you have said and come up with some more

questions to ask you about how you have been able to get help from

your doctor and get back to you. I am done for today though.

thanks very much for you post, it was thought provoking.

:-)

Adam

> Adam

>

> Most doctors are at a loss of what other things to suggest unless

they have

> learned about mito, but they can run tests to determine

electrolyte balance

> and some of the vit. levels. Many of the other suggested

supplements made by

> mito docs are relative to other issues being addressed, such as

alpha lopoic

> acid for those with blood sugar issues. Doctors are familiar with

the over

> and under readings of blood testing to determine levels of many of

the

> vitamins. One warning - don't try to interpret the results

yourself. If you

> are supplementing (even with diet in some cases) your levels may

show as low

> or high. A doctor should know this information. That is why it is

important

> to talk with a doctor about the results. Maybe you could give the

doctor a

> list of suggested meds by Dr. Cohen and ask about them. He should

be able to

> suggest amounts or address taking or not taking depending on your

conditions

> and what knowledge he has about each one. Not every doctor has this

> information in his head, so you might need to give him the list and

give him

> time to read and talk with other docs before your next appointment.

I feel

> very strongly that we need our doctors to work with us every step

of the

> way. A nutritionist might also be of help in working with you in

> conjunction with a doctor. Supplements can be as harmful as helpful

for us.

> I keep a list of my meds, dosages and supplements and dosages in my

> computer. The supplements list why they were prescribed for each

one. This

> helps a different specialist to see how they fit into the scheme of

things,

> so they don't just tell you to stop them all. Taking all the stuff

we take

> sure can muddy the waters for the docs who are use to dealing with

one issue

> in a " normal " person.

>

> laurie

>

> > http://docs.yahoo.com/info/terms/> .

[Guest guest]

Adam

It took me 15 years for a diagnosis and I have been working with several

doctors since then. I see Dr. Cohen once a year and my MDA mito doc every 6

months. Whenever I see a new doctor I give them a copy of the " Think

Mitochondria " booklet from UMDF. I think they are $3.00 each. My primary

doctor is a geriatric doctor (I'm the baby in her practice), but many of the

problems I have had develop are the the same as the geriatric population.

(aging is due to mito death). She sends me to specialists if she can't

figure it out. It was a nephologist who did the blood and urine work-up that

answered the question of why several of my electrolytes were low. I now only

have to see him once a year and my primary doc keeps track of lab work. Each

doc I have gone to, including the MDA mito doc, have had to learn, but have

been willing. It does mean more visits to give them time to do reading. I

have had those willing to talk with Dr. Cohen before surgery. It did mean

insisting on an appointment with the head of anesthesiology way ahead of the

surgery. I actually live in an area that has had a horrible reputation in

the past for medical care, but we are all learning together. Most of my mito

type labs are normal. My amino acids are also low. An endocrinologist dealth

with my low Vit. D level.

I hope this helps some.

laurie

>

> Reply-To:

> Date: Sun, 13 Jun 2004 14:27:29 -0000

> To:

> Subject: Laurie, working with Mito Docs [was 5HTP warning]

>

> Hi Laurie,

>

> Well that was a very interesting post. :-) When I said that doctors

> have responded to low normals like they are normal and ignored

> symptoms and didn't help me, I was speaking of Primary care docs or

> GI docs and an occassional nutritionist that I have seen in the

> past. But I have already been to the two top mito specialists in the

> Boston area and I was specifically referring to them when I described

> their responses to any vitamin/mineral blood work or supplement issue

> too. The head of the Metabolic Disorder clinic told me to take Vit

> A, C, E, a multi vitamin and the Carnitine and Qgel and she had no

> other recomendations for me. The second doc I saw who is

> specifically the Mito specialist in that department reviewed what the

> previous doctor had done for tests and had nothing more to suggest.

>

> Right now I am still being evaluated and have not had a muscle biopsy

> yet. I don't know if that will change anything or not. Still, I get

> a sense that the health care that you have available to you is above

> and beyond what I have. I also have seen that the doctor I am

> seeing, although he is a Mito specialist, is working in a hospital

> that out of all the hospitals in the Boston area is probably the one

> with the least funds. They are understaffed. He has way too many

> patients too. So to do what you are suggesting to try to work with a

> doctor in this situation sort of sounds like inventing the wheel to

> me. :-) I recently had an MRI done, and it took me three weeks and

> four phone calls to get the results.

>

> I have had some vitamin level blood work done, some have been normal

> and some have been low normal and they don't make suggestions. I

> have very low vitamin D levels and nothing was suggested. I had 1/2

> of my amino acid tests come back low twice and they thought it was

> diet related, not enough protein. I just had them repeat them after

> 2 months of high protein foods so we can see if they are actually

> really low or diet related. I had to initiate that, they didn't.

>

> Aside from those specific low levels, I am not sure if everything

> that should be tested has been done. Maybe in your case, you have

> lots of abnormal results show up that give you enough information to

> know what to address. In my particular case, right now my test

> results are not giving a clear picture despite severe symptoms.

>

> I also keep a list of supplements on my computer and I chart all the

> supplements I take and the food I eat. I chart my sleep and how much

> water I drink and how many sets of stairs I have gone up and any

> unusual activity etc, etc... I am inconsistent with it as it is

> often times too much for me to keep up with, as typing is something

> that I have to limit and be careful of. When something is off, I try

> to figure out what might have caused it. When I take supplements I

> watch for changes, often times I can tolerate them at one time and

> not at another.

>

> I have yet to find a doctor that will work with me in that much

> detail, so I am on my own, doing the best I can. Every time I see a

> new doctor I hope that he will work with me closer to make things

> easier and more productive but so far I have been disappointed. I

> began being ill in 1979, so I have been at this a long time. I am on

> my own, not from lack of trying to find a doctor, a diagnosis or some

> treatment. I hope that the current doctor I have will work out the

> way you are suggesting.

>

> I will think about what you have said and come up with some more

> questions to ask you about how you have been able to get help from

> your doctor and get back to you. I am done for today though.

>

> thanks very much for you post, it was thought provoking.

> :-)

> Adam

>

>

>> Adam

>>

>> Most doctors are at a loss of what other things to suggest unless

> they have

>> learned about mito, but they can run tests to determine

> electrolyte balance

>> and some of the vit. levels. Many of the other suggested

> supplements made by

>> mito docs are relative to other issues being addressed, such as

> alpha lopoic

>> acid for those with blood sugar issues. Doctors are familiar with

> the over

>> and under readings of blood testing to determine levels of many of

> the

>> vitamins. One warning - don't try to interpret the results

> yourself. If you

>> are supplementing (even with diet in some cases) your levels may

> show as low

>> or high. A doctor should know this information. That is why it is

> important

>> to talk with a doctor about the results. Maybe you could give the

> doctor a

>> list of suggested meds by Dr. Cohen and ask about them. He should

> be able to

>> suggest amounts or address taking or not taking depending on your

> conditions

>> and what knowledge he has about each one. Not every doctor has this

>> information in his head, so you might need to give him the list and

> give him

>> time to read and talk with other docs before your next appointment.

> I feel

>> very strongly that we need our doctors to work with us every step

> of the

>> way. A nutritionist might also be of help in working with you in

>> conjunction with a doctor. Supplements can be as harmful as helpful

> for us.

>> I keep a list of my meds, dosages and supplements and dosages in my

>> computer. The supplements list why they were prescribed for each

> one. This

>> helps a different specialist to see how they fit into the scheme of

> things,

>> so they don't just tell you to stop them all. Taking all the stuff

> we take

>> sure can muddy the waters for the docs who are use to dealing with

> one issue

>> in a " normal " person.

>>

>> laurie

>>

>>> http://docs.yahoo.com/info/terms/> .

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

[Guest guest]

Adam,

Sounds familiar! There are no doctors in our area who have much

knowledge or experience in treating mito patients, so I can identify

with much of what you are saying.

Re supplements, in my experience the average PCP consistently

_underestimates_ both the potential benefits and potential harm that

can come from use of supplements in mito. If I ask the local docs

about trying a supplement (always accompanied by brief rationale and

documentation) they invaribly say, sure, go ahead, it can't hurt

anything! Hmmmm. On the other hand, if I report significant benefit

from a supplement, they are often skeptical that a " vitamin " could

produce much benefit, even when shown similar case histories. I do

try to educate gently and tactfully, but this is a long and arduous

process that can take many, many years. Some are more teachable than

others.

Recently, one of the specialists I have seen for 20 years said he

felt like I help myself more than he helps me. This is true (and he

was gracious to acknowledge it), but at least he is open to my

suggestions. Maybe this will be the best kind of doc you can find

for now, one who will listen and be open to suggestions. Meanwhile,

it sounds like you are doing a great job of tracking your progress

and helping yourself. This is essential. No one but you can really

observe first hand how you respond. Keep up the good work, and don't

give up on the docs. It is possible to develop a good working

partnership with a physician who does not know much about mito. It

just takes a lot of time and effort.

Take care,

Barbara

>

> I have yet to find a doctor that will work with me in that much

> detail, so I am on my own, doing the best I can. Every time I see

a

> new doctor I hope that he will work with me closer to make things

> easier and more productive but so far I have been disappointed. I

> began being ill in 1979, so I have been at this a long time. I am

on

> my own, not from lack of trying to find a doctor, a diagnosis or

some

> treatment. I hope that the current doctor I have will work out the

> way you are suggesting.

>

> Adam

[Guest guest]

Barbara and Adam

I sure can relate to working with a doctor to learn together. My MDA doc

knew our previous diagnosis were wrong, but didn't have any ideas.

and I mentioned mito and he did know enough about it to think it was a

possibility. In the past 6 years he has been learning and now sees primarily

mito patients in his private practice. I certainly do appreciate when a

doctor is open to learning and also admitting when they don't know

something. I really hate it when they pretend they know all about it and

they don't have a clue.

laurie

>

> Reply-To:

> Date: Sun, 13 Jun 2004 18:33:42 -0000

> To:

> Subject: Re: Laurie, working with Mito Docs [was 5HTP warning]

>

> Adam,

>

> Sounds familiar! There are no doctors in our area who have much

> knowledge or experience in treating mito patients, so I can identify

> with much of what you are saying.

>

> Re supplements, in my experience the average PCP consistently

> _underestimates_ both the potential benefits and potential harm that

> can come from use of supplements in mito. If I ask the local docs

> about trying a supplement (always accompanied by brief rationale and

> documentation) they invaribly say, sure, go ahead, it can't hurt

> anything! Hmmmm. On the other hand, if I report significant benefit

> from a supplement, they are often skeptical that a " vitamin " could

> produce much benefit, even when shown similar case histories. I do

> try to educate gently and tactfully, but this is a long and arduous

> process that can take many, many years. Some are more teachable than

> others.

>

> Recently, one of the specialists I have seen for 20 years said he

> felt like I help myself more than he helps me. This is true (and he

> was gracious to acknowledge it), but at least he is open to my

> suggestions. Maybe this will be the best kind of doc you can find

> for now, one who will listen and be open to suggestions. Meanwhile,

> it sounds like you are doing a great job of tracking your progress

> and helping yourself. This is essential. No one but you can really

> observe first hand how you respond. Keep up the good work, and don't

> give up on the docs. It is possible to develop a good working

> partnership with a physician who does not know much about mito. It

> just takes a lot of time and effort.

>

> Take care,

> Barbara

>

>

>

>>

>> I have yet to find a doctor that will work with me in that much

>> detail, so I am on my own, doing the best I can. Every time I see

> a

>> new doctor I hope that he will work with me closer to make things

>> easier and more productive but so far I have been disappointed. I

>> began being ill in 1979, so I have been at this a long time. I am

> on

>> my own, not from lack of trying to find a doctor, a diagnosis or

> some

>> treatment. I hope that the current doctor I have will work out the

>> way you are suggesting.

>>

>> Adam

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

[Guest guest]

I can also relate and had a wonderful experience last week with a Neuro

Opthamologist who seemed to know more than anyone I have talked to outside of Dr

Cohen. It was pretty surprising and goes to show you that the PCP or even the

regular Neuro (I see an MDA doctor here who admits he doesn't know anything

about Mito) don't have much to offer. Sometimes, an endocrinologist or a

genetic specialist can be your best source.

Adam - you are too close to Dr Korson not to take advantage of his expertise if

you haven't already.

Alice