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The Michigan Lyme Disease Association will be have ing a Lyme Symposium in

September and this Doctor needs to attend. Can't tell all the details yet

but I will when I can. It will be held in Midland. Hope we can get many to

attend from this state . We may inlist you for your help as we get

closer. Take Care

Bev MI

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--- B56G@... wrote:

> From: B56G@...

>

> The Michigan Lyme Disease Association will be have

> ing a Lyme Symposium in

> September and this Doctor needs to attend. Can't

> tell all the details yet

> but I will when I can. It will be held in Midland.

> Hope we can get many to

> attend from this state . We may inlist you for

> your help as we get

> closer. Take Care

>

> Bev MI

>

> Bev-

I will mention it to him and Im sure he would be interseted in

attending. He really does seem to want to know as much about it as he

can. The other thing that really impresses me about him is that his

philosophy is " I want to provide the best treatment I know how and

learn how to improve on what I dont " He is a very pt oriented doc.

Any thing I can do to help you please let me know.

L

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Hi L,

I'm so glad to hear about your wonderful LLMD. I'm sure he'll get you

through this. I think it would be wise for him to treat your daughter

w/abx just to be on the safe side. My daughter wouldn't have had to have

been treated (whew!) for so many years if her original pediatrician gave

her abx after her tick bite. Let us know what happens. Take care, Joan

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--- Starkman <Namkrats3@...> wrote:

> Hi L,

>

> I'm so glad to hear about your wonderful LLMD. I'm

> sure he'll get you

> through this. I think it would be wise for him to

> treat your daughter

> w/abx just to be on the safe side. My daughter

> wouldn't have had to have

> been treated (whew!) for so many years if her

> original pediatrician gave

> her abx after her tick bite. Let us know what

> happens. Take care, Joan

>

> Joan-

He really is great. I think the reason he is waiting to treat her is

because she has never had a rash and her symptoms began in Jan when it

was so cold. Plus he wants to see what all of her other labs show. Did

the full panel. So there may be something else going on. He did say tho

that if there were any doubts he would error on the cautious side and

give her a months worth and then do the LUAT to see what it showed. We

should ahve all of the labs except the Lyme ones back in a week so he

will call her in something if need be. I am going to trust his

judgement on this because I really do think if he thought there was any

possibility he would not hesitate to treat her.

I will keep you posted.

L

>

> Get your free @ address at

> http://mail.

>

>

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Hi L.,

Thanks for bragging about us to your doctor, your treatment protocol

sounds pretty good to me, I just wish the doctor would not rely on Lyme

tests for your daughter and go ahead with the abx treatment to see if she

responds. I do recall though when I was around 7 or 8 having excruciating

leg pains, my mother told me they were growing pains, and I guess she was

right. Don't worry about remembering all your doctor said to share with us,

the important thing is that you get the meds and testing straight, and I am

so glad the nurse wrote it down for you.

Hugs,

Marta

-

>From: lc lott <lclott@...>

>

>Hi all-

>Heres the update on my appt yesterday. I am stopping the Rocephin on

>Thurs and the doing the LUAT on Sat,

>Mon and WED. Then having another set of cultures done on Thurs. Then

>its back on the Rocephin for another 3 weeks. Also having an Echo and a

>SPECT scan to determine how much is going on in my heart and brain. We

>are also waiting on the sensitivity report to decide the next path to

>take as far as combo orals when Im done with the Rocephin. He was glad

>to see some improvement in the other areas but we are both still

>concerened about the cardiac and Neuro involvement. More neuro than

>anything. Spect scan should show how much and how bad I guess. I was

>doing the typical blank stare while he was talking thing and had to

>keep having him repeat it because it didnt sink in the first 5 times he

>said something. Had his nurse write down all the LUAT and Culture stuff

>for me so I would be able to do it right.

>He also checked my daughter over and did a full blodd workup including

>a ELISA and WB (for the ins co.) to see if there is anything out of

>whack with her. Based on his exam he really doesnt feel it is Lyme but

>if nothing else on her labs comes back abnormal may treat her with oral

>abx and then do a LUAT to see if she sheds anything. His though on the

>knee pain and her headaches is that she is growing so fast and her

>hormones are all messed up so it could be her age. He is also a Sports

>Medicine doc and said the big clue for him was the indentation above

>her knees shows that she is just growing so fast. Does that make

>sense? Like I said I was foggy while we were talking so may have missed

>a few key points. We were there for 2 1/2 hrs between the 2 of us and

>he did a really complete exam on her so I feel very comfortable with

>his opinion.

>We also got into quite a discussion about the whole micro side of Lyme

>and wish I could remember what he said because I know it was really

>interesting and for the moment quite informative. He told me he reads

>everyhting he can to try to understand the whole disease process and

>his feeling is that there are so many different opinions on how to

>treat it that he has a hard time keeping up and understanding it

>himself.(Think he was seeing the blank look and trying to make me feel

>better)LOL.

>So, guess that is the plan at least as much as I remember.

>Thanks for all the support and encouragement. I even told him how

>wonderful this group is and that this is where I get most of my

>education.

> L

>

>

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Hi ,

My son had the same thing. He grew 5 " in one month. Happened in Sept, on

year, so all the school clothes i bought in late Aug, were too short!

Anyway it caused severe pain and osteomylitis. Hope all is ok with her.

Connie, MI

OK YOU GUYS, I TRY AND DRINK BOTTLED WATER

HEARD THAT'S NOT TOO GOOD EITHER, CAN'T WIN

LOL LOL LOL

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--- J & M McCoy <mlmccoy@...> wrote:

> From: " J & M McCoy " <mlmccoy@...>

>

> Hi L.,

> Thanks for bragging about us to your doctor, your

> treatment protocol

> sounds pretty good to me, I just wish the doctor

> would not rely on Lyme

> tests for your daughter and go ahead with the abx

> treatment to see if she

> responds. I do recall though when I was around 7 or

> 8 having excruciating

> leg pains, my mother told me they were growing

> pains, and I guess she was

> right. Don't worry about remembering all your

> doctor said to share with us,

> the important thing is that you get the meds and

> testing straight, and I am

> so glad the nurse wrote it down for you.

>

> Hugs,

> Marta

> -

> Marta-

Only giving credit where credit is due. As far as treating Ang I really

think he is looking for something else but wont hesitate to treat her

if she shows any possibility. I really trust his judgement and think he

is waiting to see if any of her other labs are funky. I tried to talk

to the Neurologist about the possibility of it being her age and

hormones and he of course blew me off because it was my suggestion and

not his. This doc isnt like that at all. He may try to put her on the

pill to see if that helps her head. As far as my treatment plan he said

he follows Dr. B and someone else and cant remember who now. And his

nurse is a saint. She spent from 11:00 yesterday until 5:00 to schedule

this spect scan and echo for me. No where in this stupid state has even

heard of them. We were both about pulling our hair out. The place he

usually sends pts for the spect is about 3 1/2 hrs away and we were

trying to find somewhere closer. Finally found a place. What a

nightmare! So I am having an MRI on the 29th of June and then the Spect

and the echo on the 1st of July.

Now I am dreading this whole thing. I hate MRIs and they insist on

sedating me for it and I hate that feeling even more. Nothing like a

little more fog to make my day. GRRRRRRRRR

L

>

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>From: lc lott <lclott@...>

>> Marta-

> As far as my treatment plan he said

>he follows Dr. B and someone else and cant remember who now. And his

>nurse is a saint. She spent from 11:00 yesterday until 5:00 to schedule

>this spect scan and echo for me. No where in this stupid state has even

>heard of them. We were both about pulling our hair out. The place he

>usually sends pts for the spect is about 3 1/2 hrs away and we were

>trying to find somewhere closer. Finally found a place. What a

>nightmare! So I am having an MRI on the 29th of June and then the Spect

>and the echo on the 1st of July.

>Now I am dreading this whole thing. I hate MRIs and they insist on

>sedating me for it and I hate that feeling even more. Nothing like a

>little more fog to make my day. GRRRRRRRRR

> L

The stress of going to a doctor or test or a new place can trigger off a

flareup of Lyme for me. So I have to really limit my outings.

I goofed yesterday and had an appointment scheduled for my most tired time

of the day. Today I am paying for it. So far I slept 12 hours, elevated

temp, rib soreness, calf cramping [even with Magnesium] and very tired.

Getting ready to climb back into bed. But this time with my colored

pencils at hand. I need to do something creative today.

Kiana Rossi

mailto:bornfree@...

~ ~~ ~~~ ~~~~ ~~~~~ ~~~~~~ ~~~~~~~

" An idea forms into a collocation of colors and design.

My art is a documentary of my complex inner world, expressing

thoughts and feelings through colored pencils and collage. "

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--- Cslyme@... wrote:

> From: Cslyme@...

>

> Hi ,

> Let me know where they found the Spect Scan. so we

> can keep a file for others.

> Thanks,

> Connie, MI

>

> Connie-

I am having mine done at Blodgett in Grand Rapids. I guess Dr. V sends

people to Southfield also but dont know the name of the hospital. I

know that in Lansing noone has even heard of it and one of the

hospitals is the Neuro center. Thought that was interesting.

L

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--- Cslyme@... wrote:

> From: Cslyme@...

>

> Hi ,

> My son had the same thing. He grew 5 " in one month.

> Happened in Sept, on

> year, so all the school clothes i bought in late

> Aug, were too short!

> Anyway it caused severe pain and osteomylitis. Hope

> all is ok with her.

> Connie, MI

>

> OK YOU GUYS, I TRY AND DRINK BOTTLED WATER

> HEARD THAT'S NOT TOO GOOD EITHER, CAN'T WIN

> LOL LOL LOL

>

> Connie-

I really hope that that is the problem. Between that and the hormone

thing I hope she regulates everything soon. I had a big problem with

leg pain when I was little. Can remember my Dad rubbing my legs for

hours because they hurt so bad and I would just lay there and cry. Only

way anyone could get some sleep was for him to rub my legs until they

quit. The funny thing is my Mom took me to the doctor and he took my

tonsils out. Never figured out what that was all about but it was the

time when everyone had a tonsilectomy so guess that was the standard

treatment for everything. LOL

L

P.S.

Ive been a good girl and have been drinking alot of water. LOL

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--- LymeDizzez@... wrote:

> From: LymeDizzez@...

>

> In a message dated 6/10/99 7:52:33 AM Eastern

> Daylight Time, lclott@...

> writes:

>

> << P.S.

> Ive been a good girl and have been drinking alot of

> water. LOL >>

>

> Why the water? What connection does it have? How

> much water?

>

> , New Bedford, MA.

> <A HREF= " http://members.tripod.com/LymeDizzez/ " >Lyme

> Disease and Me</A>

> ICQ # 26791014

>

> -

Water helps flush your system and hopefully helps get rid of the dead

sphiros as well. Plus the dehydration that alot of us have. The heat

here has been terrible for the lasr few days so between 90 degree temps

outside and the fever I have had since starting the Rocephin I get

dehydrated quickly. I am trying to drink at least 6 glasses a day and

for the last 2 days have probably had alot more than that and am still

VERY thirsty. Also drinks like pop and all the sweet stuff is bad for

yeast problems. So far I havent had a yeast problem but want to avoid

it if I can so have forced myself to drink water instead of pop.

L

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--- Cslyme@... wrote:

> From: Cslyme@...

>

> Hi ,

> Jeez, they need to get their #$@# together, Dr. B.

> has been useing the Spect

> Scans for a couple of years now.

> Be Well,

> Connie

>

> Connie-

I was amazed at the fact that Sparrow Hospital which is the

neuro/trauma center in the area had no idea what a spect scan was. This

is no little small town hospital we are talking about. Then when the

nurse tried to explain it the lady on the phone said how does a bone

scan tell you what is happening in the brain. Thats when the nurse said

thanks anyway and called elsewhere. I really do think MI is about 10

yrs behind the real world.

L

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In a message dated 6/11/99 1:10:37 AM Eastern Daylight Time,

byrd@... writes:

<< So drink, drink, drink and hope your feeling better

soon!

Smiles

PS Send name or number for more information the support group in Fall River

>>

OK. That makes a heck of a lot of sense. The Fall River Lyme Disease Support

Group is handled by Maureen (508) 730-1133. She was a bundle of great

information and the first thing she recommended is to stay away from both

Tufts University and Yale University.

, New Bedford, MA.

<A HREF= " http://members.tripod.com/LymeDizzez/ " >Lyme Disease and Me</A>

ICQ # 26791014

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>

> Why the water? What connection does it have? How much water?

>

> , New Bedford, MA.

,

You need to drink alot (6-8 glasses) of water a day to flush your kidneys.

Taking excessive amounts of antibiotics can build up in your kidneys and

cause problems there. Different medications either metabolize in your

kidneys or your liver but your kidneys flush all the toxins out of your

body and if you are not drinking enough water then they (kidneys) build up

and become toxic. So then you get dehydrated and end up with a bladder

infection ect... ect... So drink, drink, drink and hope your feeling better

soon!

Smiles

PS Send name or number for more information the support group in Fall River

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  • 9 years later...
Guest guest

Heya Carolyn, I totally understand your frustration.....

I had to approach my neuro several times about it. Printed him tons of

information, but he kept on blowin' it off. Finally I told him... " Look, I've

been on Copaxone for a year....and now I'm worse off. This drug (LDN) has

already been approved for SAFETY at a dose TEN TIMES higher than I want to take

it at. I understand that you feel that all the supporting evidence is

anecdotal, but, you and I BOTH know that taking it isn't going to hurt me. If

you won't prescribe it for me.....you're FIRED....I'll find someone else who

will.! "

He finally conceded and wrote me a 3-month Rx. I have let him continue to

believe that I'm still taking Copaxone, but, even though I'm still buying my

month supply each month, I haven't taken a shot in 6 weeks. I feel better now

on LDN (after only two months) than I EVER did on Copaxone.

LDN isn't a miracle drug. I still have fatigue and balance issues that never

seem to completely go away....but I have a markedly easier time walking than I

have in two years....and for me...that's HUGE!

I will say though, that I had a backup plan when I confronted my neuro. If he

would have told me " no " , I had already talked to my Primary Care Dr. who is a DO

and he already told me he had no problem what so ever prescribing something off

label if its safe and has a chance to help me. So...have a back up plan before

you go all fire and brimstone on your neuro.

I'm wishing you the best of luck and the best of health.

- Ken C.

>

> I just got back from the doctor and handed him all of the printed out

information about LDN. He bristled right away and seemed very resistant, but

promised to look at it. I am not hopeful, he seems to be entrenched in

stubborness. Well I did my part. I think I am just going to have to buy it on

line and mix it myself, I really don't like doing that but if I have to, oh

well.

> He gave me the same song and dance " not FDA approved for that use " " off label

prescribing " " blah blah blah " .

> I was like, hey how much worse can this be that the horse crap your peddaling

now, IV Lidocane infusions and immune supressant and poison, heavy duty opiates,

how can 1.5mg starter dose of a 50 mg FDA approved drug possibly be anymore

harmful?

> grrrr....

> But at least we have options, thank God. I just really wanted him to be on

board in the whole process. Maybe he really will read the research I provided

him with but I am not going to hold my breath...

>

> Carolyn Sunday

>

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Thanks Ken,

isn't the doctor patient relationship rediculous? I pay him therefore he is in

fact my employee. Yet doctors act as though the dichotomy is reversed! And I

should dock his pay for every minute that he is late for my appointment.

Anyway thank you for the encouragement, I did send duplicate copies of LDN

literature to my primary care physician who is also a DO, and I have yet to

discuss it with him. It just would be really nice to have ONE of my doctors on

board with my health care (stressing the word MY)!

Carolyn

> >

> > I just got back from the doctor and handed him all of the printed out

information about LDN. He bristled right away and seemed very resistant, but

promised to look at it. I am not hopeful, he seems to be entrenched in

stubborness. Well I did my part. I think I am just going to have to buy it on

line and mix it myself, I really don't like doing that but if I have to, oh

well.

> > He gave me the same song and dance " not FDA approved for that use " " off

label prescribing " " blah blah blah " .

> > I was like, hey how much worse can this be that the horse crap your

peddaling now, IV Lidocane infusions and immune supressant and poison, heavy

duty opiates, how can 1.5mg starter dose of a 50 mg FDA approved drug possibly

be anymore harmful?

> > grrrr....

> > But at least we have options, thank God. I just really wanted him to be on

board in the whole process. Maybe he really will read the research I provided

him with but I am not going to hold my breath...

> >

> > Carolyn Sunday

> >

>

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From: sundaycarolyn <csunday@...>Subject: [low dose naltrexone] Re: dr appt updatelow dose naltrexone Date: Tuesday, April 7, 2009, 9:40 PM

Thanks Ken,isn't the doctor patient relationship rediculous? I pay him therefore he is in fact my employee. Yet doctors act as though the dichotomy is reversed! And I should dock his pay for every minute that he is late for my appointment.Anyway thank you for the encouragement, I did send duplicate copies of LDN literature to my primary care physician who is also a DO, and I have yet to discuss it with him. It just would be really nice to have ONE of my doctors on board with my health care (stressing the word MY)!Carolyn> >> > I just got back from the doctor and handed him all of the printed out information about LDN. He bristled right away and seemed very resistant, but promised to look at it. I am not hopeful, he seems to be entrenched in stubborness. Well I did my part. I think I am just going to have to buy it on line and mix it myself, I

really don't like doing that but if I have to, oh well.> > He gave me the same song and dance "not FDA approved for that use" "off label prescribing" "blah blah blah". > > I was like, hey how much worse can this be that the horse crap your peddaling now, IV Lidocane infusions and immune supressant and poison, heavy duty opiates, how can 1.5mg starter dose of a 50 mg FDA approved drug possibly be anymore harmful?> > grrrr....> > But at least we have options, thank God. I just really wanted him to be on board in the whole process. Maybe he really will read the research I provided him with but I am not going to hold my breath...> > > > Carolyn Sunday> >>

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I do dock my doctor when they are late if they dock me if I am late.

Jeanette

sundaycarolyn wrote:

> Thanks Ken,

> isn't the doctor patient relationship rediculous? I pay him therefore he is in

fact my employee. Yet doctors act as though the dichotomy is reversed! And I

should dock his pay for every minute that he is late for my appointment.

> Anyway thank you for the encouragement, I did send duplicate copies of LDN

literature to my primary care physician who is also a DO, and I have yet to

discuss it with him. It just would be really nice to have ONE of my doctors on

board with my health care (stressing the word MY)!

> Carolyn

>

>

>

>

>>

>>> I just got back from the doctor and handed him all of the printed out

information about LDN. He bristled right away and seemed very resistant, but

promised to look at it. I am not hopeful, he seems to be entrenched in

stubborness. Well I did my part. I think I am just going to have to buy it on

line and mix it myself, I really don't like doing that but if I have to, oh

well.

>>> He gave me the same song and dance " not FDA approved for that use " " off

label prescribing " " blah blah blah " .

>>> I was like, hey how much worse can this be that the horse crap your

peddaling now, IV Lidocane infusions and immune supressant and poison, heavy

duty opiates, how can 1.5mg starter dose of a 50 mg FDA approved drug possibly

be anymore harmful?

>>> grrrr....

>>> But at least we have options, thank God. I just really wanted him to be on

board in the whole process. Maybe he really will read the research I provided

him with but I am not going to hold my breath...

>>>

>>> Carolyn Sunday

>>>

>>>

>

>

>

>

> ------------------------------------

>

>

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Hi Carolyn,I think Ken in his response gave you some good advice as far as how to approachyour doctor.I think also if you develop a 'posture/demeanor' that clearly says that you're NOT asking his permission but rather seeking his (and other doctor's) opinion...and after reviewing all the opinions that you'll be selecting a doctor to be your "PARTNER"...that you want someone to help you manage YOUR health issues and therapy... etc. In other words...he needs to know that he's [sort of] being interviewed....and that YOU are the one driving...YOU are the one who will make the decisions. Best wishes,Jann

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Well done for trying Carolyn. I had the

same experience last week.

Perhaps we should get a t-shirt made I

ANNOYED MY DOCTOR WITH LDN INFO!

Maybe one day they will open up.

Nuala

From:

low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of sundaycarolyn

Sent: 07 April 2009 21:40

To:

low dose naltrexone

Subject: [low dose naltrexone] dr

appt update

I just got back from the doctor and handed him all of

the printed out information about LDN. He bristled right away and seemed very

resistant, but promised to look at it. I am not hopeful, he seems to be

entrenched in stubborness. Well I did my part. I think I am just going to have

to buy it on line and mix it myself, I really don't like doing that but if I

have to, oh well.

He gave me the same song and dance " not FDA approved for that use "

" off label prescribing " " blah blah blah " .

I was like, hey how much worse can this be that the horse crap your peddaling

now, IV Lidocane infusions and immune supressant and poison, heavy duty

opiates, how can 1.5mg starter dose of a 50 mg FDA approved drug possibly be

anymore harmful?

grrrr....

But at least we have options, thank God. I just really wanted him to be on

board in the whole process. Maybe he really will read the research I provided

him with but I am not going to hold my breath...

Carolyn Sunday

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