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Hi ! Geoff here.

You wrote:

> Here's one of the problems, I didn't tell him I had started

> the program with Dr. Sentef again, though he was aware of

> it the first time. (snip) I'm sitting around thinking I should

> be keeping these guys on the same page

Haven't read anything from you in some time, nice to see your notes again

but sorry you're having troubles. Keeping your cooperating doctors on the

same page is quite important, you can't count on them to remember your

individual situation -- you have to bring it to their attention.

> Secondly Dr. E asked me if we had ever done prednisone

You might want to try the herbal compound Rheumax instead

(www.healingyou.org.)

Geoff

soli Deo gloria

www.HealingYou.org - Your nonprofit source for remedies and aids in fighting

these diseases, information on weaning from drugs, and nutritional kits for

repairing adrenal damage; 100% volunteer staffed.

(Courtesy of Captain Cook's www.800-800-cruise.com)

" He deprives of intelligence the chiefs of the earth's people... "

" ...loosen the bonds of wickedness, undo the bands of the yoke, let the

oppressed go free, satisfy the desire of the afflicted, and your light will

rise in darkness and satisfy your desire in scorched places, and you will be

called the restorer of the streets in which to dwell. "

J1224

I58612

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Hi ,

I know its hard but do email DR S about the Ivs and ask if its ok.

I think I would be down right furious with that doc. I know I would

not chance the reaction again but thats me.

Why not call him up and tell him you were really surprised he did not

listen to you and presribed the medication anyway. Tell him you are

too uncomfortable with this.He is the only act in town?

Hang in there and feel free to email me. Dr S is a blesing. He

really understands. Don't be keeping this all to yourself, share it

with him and get his opinion as well! I know I do that!

Love

Marge

> Hi Everyone,

> I'm . I hardly ever post, try to input

occassionally but mostly listen and absorb the wisdom here. I have RA

and have been on the protocol for 4 years now, and taking clindy iv's

about every 12 weeks. (5days900mg (DOT) ) I went back to Dr. Sentef a few

months ago and started back on flagyl and diflucan in addition to the

mino and clindy stuff.

> I have been going thru my " normal " cycle of getting down just

brfore I need the iv's and unfortunately had to postpone them for 2

weeks, so when I started them this week I was in pretty rough shape.

I've had a lot of pain, little sleep and saw my iv Dr. so we could

consult about my pain medicine. He switched me from hydrocodone and

ultram to pentazocine and told me I could double up on it til I got

better, presumably next week or so.

> Here's one of the problems, I didn't tell him I had started the

program with Dr. Sentef again, though he was aware of it the first

time. When I saw Dr. Sentef last year the first time I told him about

doing the clindy iv's with Dr. E and he said if they helped me he

didn't have a problem with that, but I didn't remind him about it

when I restarted the program 2 months ago. I'm sitting around

thinking I should be keeping these guys on the same page and

wondering if I'm endangering myself by not having done so already.

> Secondly Dr. E asked me if we had ever done prednisone and I

said no, that was one of the drugs I was trying to avoid if possible.

He slaps his head and says thats crazy, we could probably reduce your

pain and therefore your meds if you did this. Then I remembered that

last summer I had taken part of a round of a steroid, (couldn't

remember the name naturally) and had an allergic reaction-terrible

red rash, burned like fire- and told him so. He said he would be

surprised if it was prednisone, that usually didn't cause a rash and

told me he wanted me to try this and get some relief. I called the

pharmacy when I got home and they looked it up for me and said it was

a steroid in the same family and might cause the same reaction. I had

asked him couldn't I just tough it out with the pain meds and he said

no he wanted me to try it, he really thought I would be suprised how

much it helped and that the side effects for a short dose were really

almost nothing.

> I'm sorry this is so long, I just re-read it and feel kinda

stupid. My judgement seems have totally left me. I hardly ever get

down but at the moment I'm tired of being sick and my brain feels

like a mud puddle. If anyone can make sense of this I would

appreciate some input. Love you all- and thanks in advance for even

reading all this-

>

>

>

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  • 6 months later...

As a parent and researcher and a former pateint of Dr G.

My opionion is that if you aren't getting the results you expect under Dr G

you should consult Dr Mcandless and get her book. She is well respected and

as qualified, passionate etc. Dr G. Isnt the only game in town, can be too

restrictive and when these immune modulators come into existance, Dr G will

not be the only one that has them (Dr G has been saying that these are just

arounf the corner for over 5 years. This could take another 5 years). Dont

let his Zealotness stop you from exploring other option from equally

qualified physicians. Not to say you shouldn't be carefull as there are lot

of mis-informed physicians, but Dr M comes highly recommended. Read her

book. Again Dr G isnt God here. ( I personally got tired of paying phone

consultation time just to listen to him primarily rave against most every

thing and everyone out there). Don't feel guilty about exploring other

options or other physicans who, through your deligent research, you feel can

help. You dont need permission. you asked for my 2cents, hope this helps.

R

need advise

i am the parent of a 5 year old . we have used dr g for 1.5 years and

have seen some improvement. we have run the gamut of medications and

now are on zoloft,famvir, kutapressin, gamma globulin,probiotics.

I am well aware of dr g s stringent oppostion to mercury detox and

virtualy any other supplament , even including omega 3.

Recently we have been doing significant research and have looked into

a highly respected consulting physician, dr mcandless.

she is a dan doctor who i know dr g is into total disagreement with.

however she does look at the immune system and will also look at many

other areas that dr g doesnt ddem relevant.

i am questioning how we can wait years until dr g comes up with his

immune modulators. as a parent am i being fair to my child to not

consider other things that may help, even though dr g disagrees?

_________________________________________________

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the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

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<<<Recently we have been doing significant research and have looked into

a highly respected consulting physician, dr mcandless.

she is a dan doctor who i know dr g is into total disagreement with.

however she does look at the immune system and will also look at many

other areas that dr g doesnt ddem relevant.<<<

What does she look at that Dr. G doesn't think is relevant? I heard Dr.

McCandless speak last year, and she did discuss chelation at length, and she

talked about immune issues, but I don't recall her saying anything else that Dr.

G would disagree with.

Dr. Goldberg does support chelation IF the testing is done by a Children's

Hospital and only if their tests indicate that treatment is necessary.

Incidently, Dr. McCandless has recently revised her opinion (somewhat) about

chelation.

I found the following post from the list in my archives. It helps me sort

things out when I start asking myself the same questions you are asking right

now. The " chelation queen " referred to near the end of the text is actually Dr.

McCandless:

Studies have been posted here regarding how an

activated immune system can disable some of the

metabolic enzymes. The key to improving your child's

levels (aside from a Children's eval of poisoning) is

to get his immune system cooled down and not

constantly overactive (diet, allergy reduction,

treating illnesses aggressively), and as that happens

his body's ability to cleanse itself will improve. He

said once that starts happening, the body will cleanse

itself far more efficiently than anything else you

could do. So to treat high levels of toxins, you get

the body healthy and avoid allergy triggers and food

sensitivities. Antivirals and antifungals are helpful

too, but even without them your child should be able

to clean out. There may be more info in the files.

I've seen Dr G discuss this at length when he was at

chat every week, and he is adamant that chelation is

absolutely misguided, very unnecessary except in valid

extreme cases as determined by mainstream hospitals,

and very harmful. Even 'the chelation queen' that put

out the book widely discussing it has been quoted as

deciding to chelate less often due to the numerous

complications that arise - maybe someone else can

repost that.

Best,

Donna

From: Ray Palmer <palmerr@...>

Date: Thu Nov 6, 2003 10:05am

Subject: RE: need advise

As a parent and researcher and a former pateint of Dr G.

My opionion is that if you aren't getting the results you expect under Dr G

you should consult Dr Mcandless and get her book. She is well respected and

as qualified, passionate etc. Dr G. Isnt the only game in town, can be too

restrictive and when these immune modulators come into existance, Dr G will

not be the only one that has them (Dr G has been saying that these are just

arounf the corner for over 5 years. This could take another 5 years). Dont

let his Zealotness stop you from exploring other option from equally

qualified physicians. Not to say you shouldn't be carefull as there are lot

of mis-informed physicians, but Dr M comes highly recommended. Read her

book. Again Dr G isnt God here. ( I personally got tired of paying phone

consultation time just to listen to him primarily rave against most every

thing and everyone out there). Don't feel guilty about exploring other

options or other physicans who, through your deligent research, you feel can

help. You dont need permission. you asked for my 2cents, hope this helps.

R

need advise

i am the parent of a 5 year old . we have used dr g for 1.5 years and

have seen some improvement. we have run the gamut of medications and

now are on zoloft,famvir, kutapressin, gamma globulin,probiotics.

I am well aware of dr g s stringent oppostion to mercury detox and

virtualy any other supplament , even including omega 3.

Recently we have been doing significant research and have looked into

a highly respected consulting physician, dr mcandless.

she is a dan doctor who i know dr g is into total disagreement with.

however she does look at the immune system and will also look at many

other areas that dr g doesnt ddem relevant.

i am questioning how we can wait years until dr g comes up with his

immune modulators. as a parent am i being fair to my child to not

consider other things that may help, even though dr g disagrees?

_________________________________________________

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

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I think both protocols have value. I Have my son with a dan doctor and he is

doing wonderfully. I cannot imagine where we would be now without dan doctor.

Dr. Mcandless is highly respected and her book The Starving Brain is a great

resource. Good luck whatever you decide.

need advise

i am the parent of a 5 year old . we have used dr g for 1.5 years and

have seen some improvement. we have run the gamut of medications and

now are on zoloft,famvir, kutapressin, gamma globulin,probiotics.

I am well aware of dr g s stringent oppostion to mercury detox and

virtualy any other supplament , even including omega 3.

Recently we have been doing significant research and have looked into

a highly respected consulting physician, dr mcandless.

she is a dan doctor who i know dr g is into total disagreement with.

however she does look at the immune system and will also look at many

other areas that dr g doesnt ddem relevant.

i am questioning how we can wait years until dr g comes up with his

immune modulators. as a parent am i being fair to my child to not

consider other things that may help, even though dr g disagrees?

_________________________________________________

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

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Only you can know what is best for your child and it sounds like you are

thoroughly investigating all possibilities so you can make a wise decision as to

the next step to take.

I do have a great deal of respect for Dr. McCandless -- she is one of the

rare doctors who is truly in it to help the children, tirelessly searches for

answers and gives freely. She is actually one of the reasons we sought out Dr.

G's help with viral issues after she patiently offered her ideas to me via

e-mail about some rashes my son was having and some of his other symptoms.

In answer to what she explores/addresses that Dr. G does not, in addition to

toxic metals and chemicals load as previously mentioned, is bacterial

overgrowth, overall digestive function, nutritional status, non-RX immune

modulators,

gluten-free diet and seems to have put more of her viral emphasis on the

measles virus, though I think she does still address herpes and other viral

loads.

She also focuses very heavily on supplements with some RX meds and can tend

to go very heavy very quickly on supplements, which may not be so good with

kids with lots of allergies or highly reactive systems. Interestingly, she

recently had a neurospect done on her grandchild (who is autistic) through Dr.

Amen

and is exploring the use of neurospects now in her treatment.

She could look at other issues that may be making Dr. G's protocol less

effective for your child but she does also have the tendency to jump into many

different things and recommend a huge amount of supplements that could possibly

overwhelm some kids' systems so if you do chose her route, I'd suggest going

very very slowly with it. You might also want to read up on these other things

and try to talk to Dr. G about them as a possibility for your child. He may

bristle at many of them but if you can get him to clearly explain his thoughts,

it may help you make your decision.

Gaylen

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the original author, and is not necessarily endorsed by or the

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Ray~~

I'm interested in your opinions and how your child is doing sans Dr. G.

Please e me privately.

Rose

RE: need advise

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> Only you can know what is best for your child and it sounds like

you are

> thoroughly investigating all possibilities so you can make a wise

decision as to

> the next step to take.

>

> I do have a great deal of respect for Dr. McCandless -- she is one

of the

> rare doctors who is truly in it to help the children, tirelessly

searches for

> answers and gives freely. She is actually one of the reasons we

sought out Dr.

> G's help with viral issues after she patiently offered her ideas to

me via

> e-mail about some rashes my son was having and some of his other

symptoms.

>

> In answer to what she explores/addresses that Dr. G does not, in

addition to

> toxic metals and chemicals load as previously mentioned, is

bacterial

> overgrowth, overall digestive function, nutritional status, non-RX

immune modulators,

> gluten-free diet and seems to have put more of her viral emphasis

on the

> measles virus, though I think she does still address herpes and

other viral loads.

> She also focuses very heavily on supplements with some RX meds and

can tend

> to go very heavy very quickly on supplements, which may not be so

good with

> kids with lots of allergies or highly reactive systems.

Interestingly, she

> recently had a neurospect done on her grandchild (who is autistic)

through Dr. Amen

> and is exploring the use of neurospects now in her treatment.

>

> She could look at other issues that may be making Dr. G's protocol

less

> effective for your child but she does also have the tendency to

jump into many

> different things and recommend a huge amount of supplements that

could possibly

> overwhelm some kids' systems so if you do chose her route, I'd

suggest going

> very very slowly with it. You might also want to read up on these

other things

> and try to talk to Dr. G about them as a possibility for your

child. He may

> bristle at many of them but if you can get him to clearly explain

his thoughts,

> it may help you make your decision.

> Gaylen

> have you used dr mcandless? what makes you say that she pushes the

supplaments too fast?

>

> _________________________________________________

>

> Responsibility for the content of this message lies strictly with

> the original author, and is not necessarily endorsed by or the

> opinion of the Research Institute.

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In a message dated 11/7/03 3:23:01 PM Central Standard Time,

jeffb@... writes:

> > have you used dr mcandless? what makes you say that she pushes the

> supplaments too fast?

>

I have not worked with her directly. I know of several people who are seeing

a doctor who is being trained by and getting input from Dr. McCandless.

Watching their protocols and after hearing her speak at a recent medical

conference, quick influx of multiple supplements seemed to be a big part of her

treatments. I was surprised by the number of supplements she generically

recommended

that parents in the group immediately get their kids on. From the limited

interactions I've had with her though, I'd think she'd be willing to work with

the parents on doing it slowly and selectively rather than insisting that the

children immediately be put on all the supplements.

Gaylen

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Ray,

I am also interested in speaking with you if you find the time, offlist.

Thanks, Becky

RE: need advise

>

>

> Responsibility for the content of this message lies strictly with

> the original author, and is not necessarily endorsed by or the

> opinion of the Research Institute.

>

>

>

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Hi Ray,

Count me in too--I'm interested in some of the points you've made. Please

contact me off-list whenever you get the chance.

Heidi

RE: need advise

>

>

> Responsibility for the content of this message lies strictly with

> the original author, and is not necessarily endorsed by or the

> opinion of the Research Institute.

>

>

>

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  • 10 months later...

I have a 8 year old son who is non verbal with autism we have had

some behavioral issues with him his dr recommended a complete

behavioral evaluation done at Kennedy Krieger or somewhere like that

we live in Gaithersburg land I was hoping to find somewhere

closer & to get opinions from others who have dealt with Kennedy

Krieger lately. about 3 years ago we lived in baltimore &

attempted to get help from them & had a bad experience

thanks

Valarie

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  • 2 years later...
Guest guest

Without a full evaluation, it is hard to tell whether a child is behind

or not. I just had an evaluation by early intervention for my ten

month old because of his gross motor skills, and they said he's already

behind on communication. I didn't pick it up, even though I have

another child with speech issues. Call your region's Early

Intervention progam and request a full evaluation.

in NJ

>

> my cousin who is going to be 2 years old has not spoken yet should i

> be concerned

>

> he only babbles like baby talk do you think i should be concerned

> since his sister is four and talks and she started talking at 2-3

> years old and did not stop talking and he seemed kinda spacee out and

> does not pay no attention to anyone but mom but when she leaves a

> room he starts crying like a an infant

>

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Guest guest

That sounds like my daughter at that age (she is just over 3 years old

now). I'll tell you what I was told by a speech therapist then " Don't

worry but don't wait " . Find out if you have an early intervention

program in your state. In Michigan it is called Early On. This is

covered by the school districts as it falls under part C of IDEA and

they will do a free evaluation, if he qualifies then he can get some

free therapy, although what we were offered wasn't much it was

definitely a door to other services and we had a good idea of where

she was developmentally from the evaluation that they did.

Now she is three and still learning to talk. She has some words that

she can say spontaneously and she is repeating more. Most of the time

she relies on a picture book (like PECS) to communicate. She is

diagnosed with Apraxia and professionals are questioning Autism, but

she does not have that diagnosis. Hope this helps.

Pam

>

> my cousin who is going to be 2 years old has not spoken yet should i

> be concerned

>

> he only babbles like baby talk do you think i should be concerned

> since his sister is four and talks and she started talking at 2-3

> years old and did not stop talking and he seemed kinda spacee out and

> does not pay no attention to anyone but mom but when she leaves a

> room he starts crying like a an infant

>

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