Question

[Guest guest]

Barb,

One of the pharmacists at the compounding pharmacy where I get my inhaled Tobramycin said sometimes the doctors will call the pharmacy and ask what medication they gave a certain patient the last time. I keep a record of what antibiotics and medications I have been on since March of 2000. The pharmacist said that this is a good idea. I keep three copies of the medications that I am presently taking in my purse. I put my name at the top and leave a blank to fill in the date that I see the doctor. I have three columns: one for the name of the medication and how often I need to take it, a column for the condition for which the medication has been prescribed and the third column with the name and telephone number of the prescribing doctor. With that and all the information that Medic Alert has given me, they are always surprised that I have all that information in my purse (BIG PURSE).

Thanks for your response,

Norma

[Guest guest]

Hi Becki,

I used Colymycin

for a while, but unfortunately, it didn’t help me. It’s also very expensive although

not as expensive as TOBI. Perhaps

the damage in my lung was too extensive or the pseudo was too powerful.

Barb

Re:

Question

Hi

Has anyone done Colymycin ? Its also an inhaled anti and can help

resistances....

People use it when they have very resistant gram negative bacteria like pseudo

and whatnot. It also for some reason can reverse some pan resistant

organisms....

Becki

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[Guest guest]

Norma,

I had a reaction to Bactrim during my

early bouts of pneumonia. I wound

up with extremely severe lower back pain.

It was to the point that I couldn’t sit or lie down—I could

only stand and pace the floor. The

next time I had pneumonia, I was given the same thing (silly me—I forgot

what had happened before) and it happened again. That time, I made them change the

medication. I was told that the

back pain was not a side affect of that medication and that I probably was not

allergic to it. I said that they

had better write in my chart that I am because I would NEVER take it again. They listened.

Barb

Re:

Question

Hi Bunny,

We need to be careful about medications. After that experience with my

brother, I made my children stay in the pediatrician's office for 30 minutes

after he gave them a shot for strep. Of course, now they do not use shots

so much--mostly oral or IV antibiotics. Last January when I had

pneumonia, they gave me Cefepime IV antibiotic. I had it a year before at

the same hospital for an exacerbation of bronchiectasis, but did not have a

reaction to it. In January I developed a rash on my back, so the

pulmonary doctor switched IV antibiotics.

I have a Medic Alert bracelet that shows my allergies and other dangerous

health conditions. There is a toll-free telephone number for emergency

personnel to call to get all my health, insurance, and family contact

numbers. With that and my cell phone, I feel safer.

Thanks for your concern and take care,

Love, Norma

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[Guest guest]

Norma...Can I hire you? .

[Guest guest]

,

What would you like to hire me for? I probably accidentally deleted the email that I sent to you. Please remind me what I said.

Thanks for the compliment,

Norma

[Guest guest]

Norma...I have been thinking that I really need a secretary to organize all the medical papers and records that I have accumulated over the years. Your efficient filing system qualifies you for the job.......umm...I think! Clair.

[Guest guest]

Clair,

Are you referring to what my present primary care doctor said when I saw him at my first visit, and I gave him all of my pulmonary doctor's records, my cardiologist's records and my former primary care doctor's records. He said, "Is this for me?" Then he said, "Do I need to copy it?" I said, "No, I copied it for you for your information." He then said, "I bet you have all this information filed at home." I said, " Have you been checking my filing cabinet at home." I have always been like this, and probably always will be. When my children were young, I had a hard time trying to get them to be as organized as I try to be. My organizational skills have been helpful in my secretarial jobs.

Thanks for the compliment.

Norma

[Guest guest]

I am very allergic to sulfa medications and to reglan, a common drug

used to alleviate nausea. I get massive hives for sulfas, and the

reglan, well...I found out the hard way once what anaphylaxis feels

like! At least i was in hospital, and hubby was with me, and as I

pointed out to him later, at least now I'll know how it feels if God

forbid it ever happens to me again!!

Karin

>I had a reaction to Bactrim during my early bouts of pneumonia. I

wound up with extremely severe lower back pain. It was to the point

that I couldn't sit or lie down-I could only stand and pace the

floor. The next time I had pneumonia, I was given the same thing

(silly me-I forgot what had happened before) and it happened again.

That time, I made them change the medication. I was told that the

back pain was not a side affect of that medication and that I

probably was not allergic to it. I said that they had better write

in my chart that I am because I would NEVER take it again. They

listened.

>

> Re: Question

>We need to be careful about medications. After that experience

with my brother, I made my children stay in the pediatrician's

office for 30 minutes after he gave them a shot for strep. Of

course, now they do not use shots so much--mostly oral or IV

antibiotics. Last January when I had pneumonia, they gave me

Cefepime IV antibiotic. I had it a year before at the same hospital

for an exacerbation of bronchiectasis, but did not have a reaction

to it. In January I developed a rash on my back, so the pulmonary

doctor switched IV antibiotics.

>

>I have a Medic Alert bracelet that shows my allergies and other

dangerous health conditions. There is a toll-free telephone number

for emergency personnel to call to get all my health, insurance, and

family contact numbers. With that and my cell phone, I feel safer.

[Guest guest]

Yes I was suppressing some giggles sometimes young drs amaze me.....and sometimes it makes you think that it wouldn't take a whole lot of knowledge to become one......lol

the stomach pain I was having seems to be some adhetions (I know that word is soooooooooo misspelled so please just try to sound it out) lol

that I have due to some scar tissue being removed from my ovaries about 8 years ago....I could probably go have it removed but I'm thinking that if I do then in about 8 more years I'll have more growing there due to the ones I'm having removed now......and so on and so on......so they keep removing tissue and then removing more scar tissue that builds from each surgery........seems like an awful lot of surgeries to keep having over and over.......I'd rather just bite the bullet and scream my head off with the pain for about a 1/2 hour whenever the pain hits......it helps relieve tension plus lets my kids know how annoying a bellowing scream can be when done over and over again.....(like they used to do when they were little) so guess I'll try that method for awhile and see how long I can get away with it....... Sondra

[Guest guest]

Block that email address until the problem is rectified. I did so I do not

have to have my mailbox full of this nonsense.

[Guest guest]

I think pressure in the head is quite a common one.

Many conventional doctors and neuros say that there is no pain with MS -

it shows how little they know.

O

Question

How many of you with multiple sclerosis feel like their memory has

changed or you have headaches like a pressure in their head, and when

you get moving around,it seems to subside.

el

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[Guest guest]

Hi ,

No headaches, no memory problem. Have problem where I think of the

right word and something different comes out of my mouth.

Lynn C.

> How many of you with multiple sclerosis feel like their memory has

> changed or you have headaches like a pressure in their head, and

when

> you get moving around,it seems to subside.

>

> el

[Guest guest]

dear Olivia,

I used to suffer terribly from pain, It was so badthat

the doctors prescribd makimum levels of Panadol,(Paracetamol), high

levels f codeine, & diclofenac -for arthritis

Luckily A book ca;led EAT RIGHT 4 YOUR TYPE by Dr

D'Adamo

came into my possession,and now that I have masterd the Right Diet

4 my BLOOD GROUP,

my pain is mostly , just a memory

best wishes

Elaine

( the idea is that ypur blood group reflects your ancestors diet,

so that departing from it, causes iill-health, spasms due to

'agglutination of the blood in the blood vesselsetc, it may take up

to 4 days to notice a difference,over 200 foods are available so it

is not retrictive.

>

>Reply-To: mscured

>To: <mscured >

>Subject: RE: Question

>Date: Tue, 17 Feb 2004 08:39:11 -0000

>

>I think pressure in the head is quite a common one.

>

>Many conventional doctors and neuros say that there is no pain with MS -

>it shows how little they know.

>

>O

> Question

>

>

>How many of you with multiple sclerosis feel like their memory has

>changed or you have headaches like a pressure in their head, and when

>you get moving around,it seems to subside.

>

> el

>

>

>

>

>

>

>---

>Outgoing mail is certified Virus Free.

>Checked by AVG anti-virus system (http://www.grisoft.com).

>Version: 6.0.581 / Virus Database: 368 - Release Date: 09/02/2004

>

>

>

>

[Guest guest]

Hi,According to the article I recently posted on inflammationhttp://www.clevelandclinic.org/health/health-info/docs/0200/0217.asp?index=4857What medications are used to treat inflammatory diseases? There are many medications available to decrease joint pain, swelling and inflammation and hopefully prevent or minimize the progression of the inflammatory disease. The

medications include: Non-steroidal anti-inflammatory drugs (NSAIDs – such as aspirin, ibuprofen or naproxen) Corticosteroids (such as prednisone) Anti-malarial medications (such as hydroxychloroquine) Other medications* including methotrexate, sulfasalazine, leflunomide, anti-TNF medications, cyclophosphamide and mycophenolate * Some of these medications are traditionally used to treat other conditions such as cancer, inflammatory bowel disease or organ transplants. However, when “chemotherapy” types of medications (such as methotrexate or cyclophosphamide) are used to treat inflammatory diseases, the doses are significantly lower and the risks of side effects tend to be considerably less than when prescribed in higher doses for cancer. When you are prescribed any medication, it is important to meet with your

physician regularly so he or she can detect the development of any side effects and monitor the efficacy of the medication. © Copyright 1995-2006 The Cleveland Clinic Foundation. All rights reserved**********However, if the EN is due to infection then that must be addressed to achieve a remission. Prednisone is not an antibiotic.Dr. Mercola has a lenghthy but interesting article on antibiotic therapy and rheumatic disease:http://www.mercola.com/2000/aug/27/rheumatoid_arthritis.htmI know this doesn't answer your question, but it might give you and your dr. ideas on what next to try. Obviously the prednisone is not working in your case.Let us know what you next try and your results. I hope you feel better soon!Love,idio. EN '68 You can help Erythema Nodosum Research. Just go to www.goodsearch.com and under the I'm Supporting section enter Erythema Nodosum Research Fund. Every time you use Goodsearch to search, a penny will be donated to EN Research. So sign up today, and be sure to tell your friends, family and co-workers. Let's

find a cure for Erythema Nodosum!

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Yahoo! Autos.

[Guest guest]

I have slight discoloration on my legs and arms. I just go ahead and wear what I want. I personally am not going to let EN run my life any more then what I have allowed so far.

Good luck!

Debbie en 5-7Create a Home Theater Like the Pros. Watch the video on AOL Home.

[Guest guest]

Hi Debbie,<<My doctor is recommending that I have a colonoscopy to check for IBD, but I don't have any other symptoms besides the EN. Do any of you have an opinion about whether I should get one or not?>>IBD includes ulcerative colitis and Crohn's Disease. CD can affect anywhere in the gut from mouth to anus, so a colonoscopy alone would not be enough to rule it out.We have a member whose young daughter was very short statured for her age and it turned out had CD. So sometimes the symptoms are not what you'd expect.Love,Please enter Erythema Nodosum.........Thanks!Donation Information

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

debbie and rebecca,

if i can add a couple of pennies to the discussion, for what it's

worth. i have cd and pg. what rebecca says is true, however there

are some additional points to keep in mind:

1. a colonoscopy will check (visually and biopsy) for uc, period.

2. rebecca is correct, unless your cd is in large bowel or the

terimal ileum and providing the doc can make the turn to see that

area with a colonoscopy (she couldn't with mine), that would be the

limit to finding cd. HOWEVER, most cd is found at the terminal ileum

area.

3. i would say, as a novice speaking mind you, that if the

colonscopy does not show anything, for the doc to perform a few other

simple tests, such as a sed rate (blood test) to see if there is

active inflammation. an upper edoscopy could be in order, but i

would discuss that down the line.

couple of important points about cd. cd can come on, like, BAM! or,

like in my case and in may people that are " older " , the symtoms come

on gradually. i took, what was really cd, for " other things " for a

number of years. once it reached a point of being very active and i

started getting pg and sore joints, we started to investiage ibd. so

what you " might " be used to and attributing to " other things " could

be something else entirely. probably with the investigation.

good luck,

jeff,

pg,

cd

>

> Hi Debbie,

> <<My doctor is recommending that I have a colonoscopy to

> check for IBD, but I don't have any other symptoms besides the EN.

Do

> any of you have an opinion about whether I should get one or not?>>

>

> IBD includes ulcerative colitis and Crohn's Disease. CD can affect

anywhere in the gut from mouth to anus, so a colonoscopy alone would

not be enough to rule it out.

>

> We have a member whose young daughter was very short statured for

her age and it turned out had CD. So sometimes the symptoms are not

what you'd expect.

>

> Love,

>

>

>

>

>

>

>

>

> Please enter

> Erythema Nodosum.........Thanks!

>

> Donation Information

>

>

>

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

> Be a better friend, newshound, and know-it-all with Yahoo! Mobile.

Try it now.

>

[Guest guest]

Hi ,From your description you have "malaise" which is a flu like symptom that goes along with EN. It is hard to describe malaise. It is not joint pain. It's an over-all feeling of just plain lousy. If anyone can give a better description, please do!I hope you and all our EN/PG members have a restful and pain free weekend!Shins up!Love,Please enter Erythema Nodosum.........Thanks!Donation Information

[Guest guest]

Hi and , my malaise is a general feelling of ill health. By the way, I'm down to 12 mgs. of Presnisone and I'm taking 2mgs of Prograf. Believe it or not, I have not had any nodules for two weeks. I wish my doctors could figure out the low white count issue. I'm still at 1.7. Not good. The amazing thing is I haven't been sick with a cold or flu. I'm keeping my fingers crossed that this Prograf continues to work. I'll be down to 10 mg. of Prednisone by the end of next week. Have a great weekend and stay well...Lou Re: QUESTION

Hi ,From your description you have "malaise" which is a flu like symptom that goes along with EN. It is hard to describe malaise. It is not joint pain. It's an over-all feeling of just plain lousy. If anyone can give a better description, please do!I hope you and all our EN/PG members have a restful and pain free weekend!Shins up!Love,Please enter Erythema Nodosum.........Thanks!Donation

Information

[Guest guest]

We have used Versed once and it worked beautifully! Jenn Mommy to Cole 

[Guest guest]

Grace has had Versed many times, with all of her MRI's, CT's, casting dates and her surgery. The ONLY time we have had a problem is when they gave it to her before pulling out her chest tube following her surgery. The problem then was that she was fighting the medication working. They had tried to pull the tube before she was given Versed so she was already upset and knew what they were trying to do. On top of it, they only waited like 5 minutes after giving it to her to try to do the procedure again. So she was never allowed time in which to slip into that nice relaxed state. She's never become sick from taking the meds and I don't chalk her being upset following the procedure to the meds, the only time she was upset was when I wasn't right there when she woke up and I think she was just scared. The times that they let me hold her for about 20 minutes after they give it to her,

she is pretty much asleep in my arms. If they come with the gurney too soon to take her to the holding room, she'll stay awake but is goofy.

So, I do think it is a child by child situation, not the medication itself. I personally feel that having her remember the "scary" parts of her medical journey and having to deal with it emotionally is far worse for her than the short lived affects of the medications. I too was told it causes an "amnesia" type effect. However, Grace does remember some things that she shouldn't about the OR. But she isn't upset about it, just talks about it, like them putting the mask on her.

Hope that helps.

Jane

From: Lynn Marsden <lynn_marsden@ yahoo.com>To: infantile_scoliosis @yahoogroups. comSent: Fri, February 5, 2010 11:06:00 AMSubject: [infantile_scoliosi s] Question

Hi everyone

Peyton is going in for his 5th cast on Monday and he is always extrememly fussy before going in. I mean actually screaming, whining etc. but as many of you may remember he is a cryer to begin with. Anyway my question is regarding pre anesthetic drugs. The nurses always try to talk my husband and I into giving Peyton these drugs before he is put to sleep to calm him down but I have heard awful things about them. I have heard that kids sometimes have convulsions afterwards and that they are almost always sick with actual vomitting. Is this true? Does anyone have any experience with this. The nurse also said that it has an amnesia affect and it helps the child to forget the seperation when he goes in the OR.

Lynn

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[Guest guest]



Joan and Lynn,

I agree it makes it much easier on them being taken away from the parent but it didnt make Marly any less calm when she got out. She was still hysterical afterwards for almost two hours. Every child is different. Lynn, what you can be sure of is that it will work to calm him when they are taking him away.

[infantile_scoliosi s] Question

Hi everyone

Peyton is going in for his 5th cast on Monday and he is always extrememly fussy before going in. I mean actually screaming, whining etc. but as many of you may remember he is a cryer to begin with. Anyway my question is regarding pre anesthetic drugs. The nurses always try to talk my husband and I into giving Peyton these drugs before he is put to sleep to calm him down but I have heard awful things about them. I have heard that kids sometimes have convulsions afterwards and that they are almost always sick with actual vomitting. Is this true? Does anyone have any experience with this. The nurse also said that it has an amnesia affect and it helps the child to forget the seperation when he goes in the OR.

Lynn

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[Guest guest]

Thanks everyone, I think I might try to persuade my husband to allow him to give it a try. Anything is better than a screaming toddler for the 2 hour wait time.

Lynn

Subject: Re: QuestionTo: infantile_scoliosis Received: Friday, February 5, 2010, 11:42 AM

 Joan and Lynn,

I agree it makes it much easier on them being taken away from the parent but it didnt make Marly any less calm when she got out. She was still hysterical afterwards for almost two hours. Every child is different. Lynn, what you can be sure of is that it will work to calm him when they are taking him away.

[infantile_scoliosi s] Question

Hi everyone

Peyton is going in for his 5th cast on Monday and he is always extrememly fussy before going in. I mean actually screaming, whining etc. but as many of you may remember he is a cryer to begin with. Anyway my question is regarding pre anesthetic drugs. The nurses always try to talk my husband and I into giving Peyton these drugs before he is put to sleep to calm him down but I have heard awful things about them. I have heard that kids sometimes have convulsions afterwards and that they are almost always sick with actual vomitting. Is this true? Does anyone have any experience with this. The nurse also said that it has an amnesia affect and it helps the child to forget the seperation when he goes in the OR.

Lynn

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