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Shelley

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Hi Lori, I don't remember! I think it was about a dollar a packet. I

really don't remember. Does that sound right? Try emailing me at

jane_doe_press@... and see if that works. I will mail you out the

immunocal. Glad to help. Do you want just a few packets to see how you

tolerate it? What ever you want.

> ,

> I cannot send you mail privately, keeps coming back!! Anyhow how much did

> you pay for the Immunocal? FISHL@...

> thank you

> Lori

>

>

>

>

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

>

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  • 6 months later...

,

I have only had two colds during the past six years. I got one cold during

a brief remission of my illness. Are you taking heparin in addition to the

TF or just the TF? Steve B.

Re: Re: do people with cfs get the flu/

> , I got a cold after not having one for 5 years of CFS after going on

> Transfer Factor.

>

> > Rich,

> > Thanks for asking that question. This makes sense. Your note prompted

me

> > to go back and reread the transcript of Carol's visit with CHeney when

> they

> > discussed the immune system.

> > I'm one of those that NEVER EVER gets a cold. I could go out in -100

> > degrees and nothing.

> >

> >

>

>

>

>

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

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Thanks Steve, I'll keep track of what he suggests at our next meet.

>

> I am amazed that you have a doctor who will put you on heparin but won't

do an ISAC test. I predict your doctor will get sued for malpractice one

day. There is probably a 50% to 60% probability you have ISAC but I would

find a doctor who will order the ISAC for you to make sure. Heparin is not

without risks. If you do not suffer from ISAC and are on heparin and get in

a car accident or something you could suffer from internal bleeding and die.

The only thing I can think of is that your doc is going to let you try micro

doses of the heparin which will be inadequate if you have ISAC and

reasonably safe if you don't. Steve B.

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  • 1 year later...
Guest guest

Thanks for the information, . I am considering a second med to

control the seizures that phenobarb doesn't. I think I'll run it by my doc!

Sandi

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Guest guest

Hello 's Mom,

Well, basically Trileptal is the newest anticonvulsant on the market. I

couldn't take the others, I could not tolerate 6 other meds, so he tried me

on this; I am thrilled. But it is IMPERATIVE that the med be titrated over

at least 6 weeks so avoid side effects; I was started on 1/2 tablet every

day for a week then 1 tablet for a week and so on until I reached my

therapeutic level. With my prescription coverage I pay 39.00/month and I

take 1200 mg/ day divided in two 600 mg doses. Without insurance it would

cost me about 250.00/ month. I have never been seizure free for more than a

month; with this medication, I haven't had a seizure in over 6 months- doing

the happy dance.

If you have any other questions I would be HAPPY to help. I have

struggled with epilepsy for over 15 years and finally have control.

In Him,

> Hi ,

> I'm 's Mom, and I have seizures. I hope you don't mind me asking,

but

> basically I want to know everything about the Trileptal. I now have some

> decent health insurance, and I can afford more expensive meds. I am

willing

> to try something besides phenobarb--the docs aren't too happy about that

> idea. How much/often do you take? I'm amazed that you are taking

something

> with NO side effects for you. Is it expensive? Any info you can give me

> would be greatly appreciated.

> Thank you,

> Sandi

>

>

>

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Wow, that is amazing! I am so glad that you found a medication

that works for you! Awesome! I love hearing stuff like that, gives you a

pinch of hope that a new medication will help our kids!! :o)

Diane Mom to Kody

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  • 2 weeks later...
Guest guest

Thank you for the gentle reminder and for making me feel important. So much

energy has been focused on that I've forgotten about myself. You

are right though three strikes plus one more, I am in school right now so I

am trying to focus a little bit on studying.

In Him,

> Hi ,

> I am so happy to hear of your news. It must be much less scary for

> now. I just wanted to remind you that you're working with three strikes

> against your seizures right now: Stress, lack of sleep and (I'm guessing)

> not eating as well as you should be. So, take care of yourself also! I

have

> had gran mals when Bri was a baby and in the hospital. So, the second

time,

> I was much more careful. As a member of your e-mail family, I would like

to

> kindly remind you that you count, too :) We're still praying.

> Sandi, 's Mom

>

>

>

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  • 7 years later...

Hi, ,

 

      I can sympathize over your worries because I was very worried about my

myotomy

and had some sleepless nights over it, for months before I did it.  But I've got

to say

that the advice I received from this group was the deciding factor.  Keep the

faith,

ask a lot of questions here, read the older posts and articles.  We all have

this weird

thing called Achalasia and not being able to swallow is a really crummy bummer,

to put it mildly.  When I felt food and liquid go down into my stomach after

surgery,

I couldn't believe the difference.  Amazing!  My Hellers was in Jan. 2006.

     Hang in there.

 

        Deborah, still at the beach

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