OT April Chit Chat

[stillstANNding]

Virginia, I think macrodantin and augmentin treat different bugs. You'll want the one that works.

As to the thyroid, I'd have a third to see where it lands. Otherwise it's perplexing, I agree.

ANN

[agate]

ANN is so right about the antibiotics. I've been told time and time again that I can't just have my antibiotic of choice. It has to be the antibiotic that is specific for the type of bug. Sometimes a doctor has been willing to prescribe a broad-spectrum antibiotic to tide me over until the culture results came in but if that antibiotic turned out to be not aimed at that particular bug, I'd have to switch to another antibiotic when the type of bug was known (E. coli or whatever).

[agate]

A question for people here: We all are concerned about Sally. I've sent a couple of PMs but had no reply. I can't call her at her phone number because she prefers not to be called but I have an e-mail address for her daughter. Should I send an e-mail to the daughter? I don't know the daughter at all but have seen her Facebook page and recall that Sally has often mentioned her.

[Howie]

I think that would be fine. Tell her you're from Sally's MS forum, and wanted to check on her and see how she is doing. I remember it seemed to be getting harder and harder for her to type, and she might just get offline for good.

[stillstANNding]

Sally wrote this on 2/22/2017:

It's me Sally to let you all know that l won't be here anymore. Don't send the Calvary. I'm ok just can't handle the net anymore. Don't worry I'm fine. Love you and prayers for you every day.

I'd take her at her word. Send a card if you like.
ANN

[agate]

ANN, thank you for remembering this. I'd completely forgotten that she said this. I agree that we should respect her wishes.

[Jeanie Z]

:) I sent Sally an Easter card with my phone number and said I would post for her if she would call me. She has not called. Sending Julia an email would not be sending the Calvary, it would just say we were hoping to hear how Sally is. Jeanie :)

[agate]

She may not be well enough to do the calling.

On another larger message board there was a post recently by someone who stated that one thing she liked about that board is that she can come and go whenever she wants and be gone for long stretches of time without anyone ever noticing. There are people who prefer not to be asked about. Maybe they don't want to feel pressured into doing more than they feel up to doing.

I can understand that. Asking about someone isn't really pressuring but it might be perceived as pressure.

I'm not sure what she means about sending out the Cavalry. She may indeed mean that she doesn't want her daughter contacted. Her daughter has MS and may be having difficulties of her own, and Sally may have good reasons for not wanting her to have the added responsibility of replying to us.

We have no right to any information about Sally, really. She's been kind enough to be present here and be supportive to others here for many years.


We don't really know much about one another's personal situations, and a call to anyone is an intrusion on that person's life.

Since we aren't personal friends or relatives of Sally's, maybe we shouldn't inquire at this point. If the daughter had asked us to feel free to contact her, it would be different but so far as I know she hasn't said that.

I sent her an Easter card too and have sent a couple of PMs but no reply.

With message boards, it's really hard to figure out what's appropriate and what isn't.

[Howie]

I heard that guy Howie is having a hard time keeping his cats from just running wild through his house. The one named Sam seems to be the bad seed of the group. Do you think we could call Sam and see if Howie is okay?

[agate]

If Sam is such bad news, what makes you think that Sam would be believable?

I vote for not calling Sam. Sadly, her rep here is a bit tarnished.

[Howie]

Only registered and activated users can see links., Click Here To Register...

Look at this price. If there is ever found a cure for MS with a one time injection, you can bet it would carry a similar price tag, or higher.

[Frog42]

And they've withdrawn it from the market, tsk tsk. How man people could manage to raise that much no matter how much they wanted to try it?

[Virginia]

I would be willing to call the Nursing Home that Sally is in and not ask to talk to her or really give out any information, but just ask if they could tell me if she is still there and how she is doing. I would only do this if everyone agreed that I should. I have the name of the Nursing Home and the address. I have also been mailing cards all along. So anyone have any suggestions about this?

About the antibiotic - I know that different ones are given for different things, but my other Doctors had been giving me Augmentin for UTIs because it did not set all my symptoms off as much. It has always worked. I have not taken an antibiotic in several years. This new Doctor would not give it today. She is extremely hard to get along with and goes right by the book. She does not treat the whole person. She just does what is in the medical text books. I picked up the other antibiotic today, but have not started it.

About the Thyroid - Agate the two different labs do go by slightly different scales, however I am still out of limits at one lab and well within limits at the other lab. I would like a different opinion, a more independent one, but have no place to get one.

Howie, I agree with Agate - Sam has kind of lost her credibility around here. We really can't trust her too much. Her reputation has just kind of gone to pot.

[Howie]

A little serious talk about something I have never had, a UTI. It has to be tough because every treatment for MS does so by restricting the immune system, and make it stop attacking myelin. But the reduction in immune response means it also reduces the immune response that would stop a UTI before it starts.

A classic case of damned if you do, and damned if you don't. You have to do something about the MS, but the treatment leaves your immune system reduced in it's response to infections that normally wouldn't get a chance to take root because of the body's natural response to any infection.

I understand it well, and I'm just glad I don't ever have to deal with that because my immune system is 110% and I take no DMT. It's that 10% I have to worry about.

[agate]

The disordered immune system may not be the only reason people with MS are apt to get UTIs. Many of us retain urine because our bladders aren't working right, and that pooled residual urine can be a breeding ground for bacteria. At least that's how it was explained to me once.

Virginia, you could try calling the nursing home about Sally but my guess is that they won't give out any information because of HIPAA regulations. I vote for you to try though.

I tried calling her at the phone number that is her phone there quite a while ago but she really doesn't want people calling her. It's too upsetting, or at least that's my impression from the way that very brief conversation went.

I sent her an Easter card and other cards too. It's great that people are thinking of her, and it just might impress the nursing home staff. Cards and letters pouring in from well-wishers might help the staff to realize that Sally is SOMEBODY, and they ought to be on their best behavior when taking care of her.

Howie, about that expensive drug--it's for a disease that's not just rare but very very rare. I have to wonder why they even developed the drug since most people couldn't come up with that kind of money. At least the few people who have the disease won't feel neglected now but that doesn't really help them that much, seems to me.