DMV64: reinstate Saphris?

[DMV64]

 Hello friends. I am up in the middle of the night again with burning bladder symptoms. I am now on the third round of antibiotics. Supposedly this one, a sulfa drug, showed up on the sensitivity test as being able to kill the two different bacteria‘s that I have. I thought it was working but then tonight it got bad again. I just called the on-call doctor. Probably I will go in there tomorrow. I asked her if they could be fungal or viral. SHe told me that fungal would have shown up on the test, and she hadn’t heard much about viral. I don’t understand what’s happening to me. I feel a little bit afraid. Please excuse dictation errors I’m lying in bed with a heating pad on

[Glosmom]

Hi DMV64,   I am so sorry you are going through all this with your bladder.  I wanted to stop by and just share what happened with my 23 year old daughter as she was tapering off of risperidone (also an antipsychotic). I am unsure by your signature where you are in the tapering process of Saphris, so I apologize up front if I am off base and you are no longer on an antipsychotic.  

 

As we tapered Glo (she is mentally handicapped so through most of her tapering she was unable to speak so we had to go by the objective behavior we witnessed....she is now talking since she has been at zero for 4 months now...fyi) we noticed large increase in symptoms related to her bladder and urinary function once we dropped from .1 mg to .06 mg.  

 

Maybe it is possible your urinary issues are due to the low dose of antipsychotic your are still taking? Anyway, just wanted to offer this up for consideration and again, I apologize for commenting if you are no longer taking Saphris or Geodon.  Glo is doing much better, by the way, with her urinary issues once she jumped to zero.  I wish you much peace and healing. Glosmom

 

I posted this during that time on another Forum here at SA

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Posted February 4

I would like to offer up the below research article in light of the fact I am very certain when Glo was decreased in dose of her risperidone from 1.0 mg to .06 mg, changes occurred relating to smooth muscles (autonomic nervous system (ANS)).   Gloria has had fairly regular periods for the last 9 months (23 to 25 day cycle) when we dropped to .06 her period was late and she did not start until day 33. Additionally, she had difficulty knowing she had to urinate or have a bowel movement.  I had to take her to the bathroom several times in an attempt to get her to urinate, even though she had slept all night or it had been many hours since she had la

st gone.  Gloria knows when she has to use the restroom and can and does get herself there.  This is the first time i have ever witnessed this phenomenon in her.  I imagine it is due to the fact that her lower dose is 'hitting different receptors' in her brain.

 

Below they state larger doses of risperidone decrease activity of ANS......but they don't know for sure as the subjects were on multiple meds.  In Gloria's case, the ANS was impacted by a much lower dose.  Scary thing is smooth muscle (ANS) also regulates the heart activity.....dear goodness....these drugs are poison.

 

 

 

[DMV64]

Thank you so much for all this information and sharing the story. Yes I am getting on a very low dose of the Saphris.But I still have Geodon to start the next taper and that is also in the same family so I’m not sure if this pertains to me or not but either way it’s stinks

[Rabe]

Hi DMV>>>I dont understand why they didnt do a culture right away?  Ot did they and you just got the results and the AB you were on did not cover the bacteria?  In ay case, so glad you are now on track!  Take good care of yourself.  

I am also with you on wanting to be normal....personally I think you are a most special and lovely normal.  Love and hugs!💜

[DMV64]

Hi everyone
@JanCarol @manymoretodays @Shep @Carmie @Rosetta @RabeI am very sad to report that the Sulfa drug, which should work, does not seem to be working. I am eating AZO like candy to stay out of pain as best as possible. I have an appointment Monday with the Urologists at Lankeneau. But what is the next step? The bug is resistant to everything but Sulfa (not working) and Levaquin which is a flox. IV antibiotics and a hospital adnission are next step.I don't know how long I have to stay in the hospital for that? I am afraid. Is it one dose or a number of doses for how many days?
What do I do? Maybe I should try the Levaquin, I don't know. Very upset.Need help.
Darlene

[DMV64]

5 hours ago, Rabe said:

culture

They did. It took three days to grow. But still the "right" antibiotic not working. Could it be titration?

[DMV64]

 It looks like I’m going to have to take Levaquin I’m really scared. I know I’ve taken it before a long time ago but it’s the last drug that might possibly work before a hospital stay

[Rosetta]

DMV, I have no idea what you should do, but I'm here to lend support.  I could say the obvious - try to stay calm, etc, but I know that's really hard.  All my love, Rosetta

[DMV64]

Thanks. It looks like I’m going to have to try the Levaquin at least to try to keep me out of the hospital if I have a really bad reaction to it I’m going to stop at

[DMV64]

I just noticed on the Levaquin Insert it says take two hours before or two hours after because all these things might affect it: zinc magnesium calcium and iron and I take all of those so now I’m thinking that maybe that’s why a sulfa drug is not working

[manymoretodays]

Gawk DMV!  So sorry this has gone on so long.

 

What do you mean the Sulfa is not working?  How long have you been on it?  Perhaps it just needs a bit more time.

 

And oh my......Levaquin!  If it was me, or if I were you, I sure would not go down that slippery slope.

Cipro, Levaquin, Axithromycin(Z-pack), and other antibiotics

I don't know that if you did have an adverse reaction, that it would immediately reverse itself on cessation of the offending agent.  Why risk it?

 

Why the hospital?  Are you getting fluids in?  Are you up and around?

 

I wonder, I do, if all those previous ABX for your lung or chest infection were a precursor to this.  Very difficult infection to treat now.  Bacteria are smart, seriously.  They often become ABX resistant ,when ABX are overused.  Did you ever culture for anything, with your winter infections?  Or did blood work at that time point to a bacterial infection?

 

Love, peace, healing, and growth,

mmt

 

@Glosmom  Wow, and thank you for sharing that information.

"I would like to offer up the below research article in light of the fact I am very certain when Glo was decreased in dose of her risperidone from 1.0 mg to .06 mg, changes occurred relating to smooth muscles (autonomic nervous system (ANS)).   Gloria has had fairly regular periods for the last 9 months (23 to 25 day cycle) when we dropped to .06 her period was late and she did not start until day 33. Additionally, she had difficulty knowing she had to urinate or have a bowel movement.  I had to take her to the bathroom several times in an attempt to get her to urinate, even though she had slept all night or it had been many hours since she had la

st gone.  Gloria knows when she has to use the restroom and can and does get herself there.  This is the first time i have ever witnessed this phenomenon in her.  I imagine it is due to the fact that her lower dose is 'hitting different receptors' in her brain.

 

Below they state larger doses of risperidone decrease activity of ANS......but they don't know for sure as the subjects were on multiple meds.  In Gloria's case, the ANS was impacted by a much lower dose.  Scary thing is smooth muscle (ANS) also regulates the heart activity.....dear goodness....these drugs are poison."

Do you have the research article that you mentioned?  How's Glo doing?

 

 

 

Edited June 26, 2019 by manymoretodays
further question

[DMV64]

Hi. Yes they did a urine culture that they grew out for three days. I happened to have one common bug E. coli and one that I can’t remember the name of it is rare. The one that is rare only response to sulfur and the flaxen’s. I’m not really looking forward to taking another round of antibiotics but the sulfur drugs are not working I’ve been on them for three days and they should be working right now. So I don’t really know what else to do. I am in a lot of pain

 

[manymoretodays]

Oh my.  Perhaps the sulfa drugs would work better IV??  I don't know DMV.

 

Do you have the option of home health care coming in to do the IV?  If it comes to that, it might make it less stressful, and less possibility of another infection(hospital exposure and all that). 

I am so hoping that you get some relief before it comes to that, the IV, although if needed........find out what your options are........can you do it outside of the hospital or go back and forth to get your infusions on an OP(outpatient) basis? 

Hoping the the Sulfa will kick on in.

 

Sending healing hugs and relief.  Just take it easy today.  Real easy.  Let your body do what it needs to do.

 

L, P, H, and G,

mmt

 

 

[DMV64]

Thank you. If I have to do the IV antibiotics I’m going to have to go inpatient. I don’t know how many days they do it I guess it depends on if you’re getting better. I’ve read up on all of the floxins and I know how bad they are but they’re kind of my last resort. The sulfa drugs just don’t seem to be working. I don’t know why. The culture came back with these two particular  bacteria supposed to be sensitive to it. But I feel exactly the same in pain then I did three days ago and I know that’s not right

[DMV64]

When I had all that respiratory stuff they did not do any cultures. They did some blood work I think. It’s hard to remember. Right now I will look into home health care. And I think even though it’s terrible I’m going to have to try the Levaquin. All I can say is I’ve been on the Z pack before and I have a not had a problem but I know that doesn’t mean I won’t this time

[Shep]

Sorry for the duplication if you already have this information, but this is a very good article regarding the dangers of Levaquin: 

 

Hidden Dangers of the Fluoroquinolone Antibiotic in the Benzodiazepine Dependent Population

 

Please make sure there are no other treatments available before taking Levaquin or any other fluoroquinolone antibiotic. These types of drugs affects the same receptors as benzos, so some people end up being "floxed" by combining these drugs. 

 

That article is well researched and something you could show your doctor, should you have no other choice. As mentioned in that article, you may need to increase your Klonopin to compensate. 

 

Quote

In rare cases where it has been determined that failing to administer a fluoroquinolone could result in death, benzodiazepine-dependent individuals should have their benzodiazepine dosages increased for the entire duration of fluoroquinolone therapy and until the drug is completely cleared from their system.

 

Edited July 17, 2019 by Shep
fixed link

[manymoretodays]

They will probably want to check your kidney function too at some point.  BUN and creatinine blood/lab work.

 

What can you do for the pain?  Is it down low?  Are there any yoga positions or postures that hit corresponding chakra's?  Or just a plain old heating pad?

 

Oh goodie, and Shep's come on by.

 

I will plant you a small something today.  In my garden.  For healing and comfort.

 

I am all porcelain crowned now and oddly, after my dentist appointment, there were nice free sugary waffles from one of those waffle trucks.  Yes, I indulged!

 

Rooting for you DMV, more hugs,

L, P, H, and G,

mmt

 

[DMV64]

Thanks for rooting for me. Yes they already ordered a kidney and bladder ultrasound a repeat urine and a chlamydia test. Which is unlikely but could a cause. 

 The symptoms are very painful burning burning when I go to the bathroom and then for a long time afterwards unless I take the azo. That will help me with the burning symptoms. Also general pelvic pain. 

They are concerned about a kidney infection. I just wonder if there’s anyway to make this go away without IV antibiotics or the  levaquin. 

I am so scared now to try it. But it is my last pill resort. Before the hospital. 

[Glosmom]

Hi @manymoretodays ! Here is the link to the article. I posted it originally over in another Forum  and it is  "Why Taper? SERT transporter occupancy studies show importance of gradual change in plasma concentration..."

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3534356/

[Carmie]

Hi DMV, 

 

I’m sorry you’re having such bad bladder pain. Many years ago I used to get UTI’s and I managed to kill them with the liquid olive leaf extract. I took a tablespoon of it every couple of hours until I killed it. I don’t know if it would work for you, or if it would affect your withdrawals, but I’ve done the same thing to kill an ear infection while going through withdrawals and it worked. It’s antibacterial, antifungal and antiviral. 

 

You may get side effects from it in large doses though because you’ll get die off from all the things it’s killing. You could get diarrhoea etc. 

 

I hope you find something that works for you, sending hugs🤗

Edited June 27, 2019 by Carmie
Typo

[JanCarol]

Hi D - just stopping by - I'm glad to see that MMT and Shep have weighed in on your dilemma.

I'm with Shep and MMT - personally, I would go into hospital before I would take the Levaquin.  The damage that people get from being "floxed" appears to be more permanent than that of psych drugs.  You've got the articles and then knowledge (Thanks @Shep and @manymoretodays I feel better - if I was the only voice saying:  "s-c-a-r-y" I would feel very vulnerable in making any suggestion to D here!).  Here's another one:  https://imcwc.com/html5-blank/floxed-by-fluoroquinolone-toxicity/  and this one:  https://www.nature.com/articles/d41586-018-03267-5  

It is scary - we are vulnerable when we suggest - that this may be more dangerous than that.  There are advantages and disadvantages to both.  Hospital is expensive (I am in a place where hospital would be paid for, you may not be).  Home health care is a brilliant alternative solution.  But Levaquin is a scary drug.

Olive leaf extract is a good thing to add - as is colloidal silver (in moderation!).  

REST is the most important thing for fighting infections.  It may be time for you to stop, and spend all your energy fighting this infection.

Trying to keep a "normal life" while fighting the infection just may not be possible.  S-L-O-W down.  If you have slowed down, then slow down even more.

Bed rest, chicken noodle soup, vitamin C, cranberry juice, water, bone broth, more water, and rest. 

Let's beat this thing.  Let us know what you decide.  We can't decide for you.

 

[DMV64]

I wonder where I can get this all of leaf extract is a little liquid? It looks like I’m going to be going to the hospital I don’t know if it’s today or tomorrow but I don’t want to take that Levaquin maybe they can give me a dose of something in the ER or I might have to go inpatient

[DMV64]

 I would like to try the olive leaf extract I don’t know where to get it though but I don’t know how much to give myself . Can somebody tell me how often to dose rhis and for how long

[DMV64]

3 hours ago, Carmie said:

killed

How long did that take

[manymoretodays]

Hi DMV64,

https://www.lifeextension.com/magazine/2012/3/Olive-Leaf-Safely-Modulates-Blood-Pressure/Page-01

menu to products is across the top and I don't see a single ingredient Olive Leaf Extract oil offered

Olive Leaf Extract?

Please add to this one, in symptoms and self care, if you do use, and learn more about it

 

I used a bit of colloidal silver myself for an URI, with good results.  However, I was given some by a friend.  No idea where I will get more, when that day comes, that I might need it.  I have a hefty supply still.

 

I think a general search might yield you plenty:  google:  Olive leave oil extract

And to find on site collections of information or discussions:  survivingantidepressants.org followed by the topic of interest/inquiry

 

And again, I reinforce JC's comment once again: 

2 hours ago, JanCarol said:

Olive leaf extract is a good thing to add - as is colloidal silver (in moderation!).

Moderation!  That's key.  Of course you can pay heed to checking interactions as well.

I was on to most additions of new stuff, when I was already off most of my meds/drugs or drug free.

Keep records too!

 

Any results back from your recent urine tests?  Pre-weekend, that would be nice.

Any improvement yet?

L, P, H, and G,

mmt

[DMV64]

I got the olive leaf extract and I got the colloidal silver. I’m not exactly sure how often to use them but I’ll consider the moderation. They took a second urine culture today and it probably won’t be back until Monday. I totally forgot that I had a class I have to teach tomorrow and an outdoor class on Tuesday plus this person is due to have the baby so I don’t know I need to take a nap

[DMV64]

Yay! I went to the ER and go NON FLOX IV antibiotics and a prescription to follow and I feel better already. I also got a bunch of other tictures recommended to me: Elderberry, licorice, tumeric, golden seal, eyebright, lemon balm and nettle.

Anyway I hope I am on my way!

I also got this other thing called Something Silver. Not Collidial. Um I forget. Will tell you when I get it!

[Carmie]

16 hours ago, DMV64 said:

How long did that take

 

Hi DMV, 

 

It just took a couple of days to kill both the UTI’s and ear infections with the olive leaf. I took quite a bit of it though. Hope something works for you, Sending hugs🤗

[DMV64]

Still have pain hoping it will just take time

[DMV64]

14 hours ago, Carmie said:

quite a bit of it though

How much is quite a bit?

[Carmie]

1 hour ago, DMV64 said:

How much is quite a bit?

 

Hi DMV, 

 

Sorry you’re struggling so much with the pain. It’s an awful burning pain, isn’t it? I haven’t had any UTI’s for many years now. 

As I mentioned above, I took one tablespoon or so every couple of hours. It worked, but it can make you feel ill too because you get die off from killing all sorts of bacteria, fungus and viruses in your body. It was worth it for me though, as I was glad when the pain went. 

 

Sending hugs🤗

[DMV64]

Oh yes you did say that! I bought the tincture so I’m putting it in water so I’m not sure how that translates to a teaspoon. But I’m doing one full dropper

[Carmie]

3 minutes ago, DMV64 said:

Oh yes you did say that! I bought the tincture so I’m putting it in water so I’m not sure how that translates to a teaspoon. But I’m doing one full dropper

 

I don’t really know anything about the tincture DMV,

 

I’ve only used bottles of the olive leaf extract liquid. I usually get a 500ml bottle. I took a tablespoon of it throughout the day. I’ve killed lots of infections with it in the past. When I had ear infections I even put some of it in my ear with a dropper. 

 

Hope the pain goes soon.💚

[JanCarol]

Of all of the suggestions here - I've noticed that nobody has picked up on this one, which I think is the most sensible and logical suggestion.  So I'm going to say it again:
 

On 6/27/2019 at 11:33 PM, JanCarol said:

REST is the most important thing for fighting infections.  It may be time for you to stop, and spend all your energy fighting this infection.

Trying to keep a "normal life" while fighting the infection just may not be possible.  S-L-O-W down.  If you have slowed down, then slow down even more.

Bed rest, chicken noodle soup, vitamin C, cranberry juice, water, bone broth, more water, and rest. 

 

I know it doesn't sound "strong enough" - and maybe it isn't.  But if you don't do this, the olive leaf oil won't have a chance.

I hope you get relief soon!

[DMV64]

I will try. Unfortunately today is my future daughter in laws bridal shower in nyc. I am going to try to rest in the car.  

[DMV64]

Oh yeah and of course my client went into labor middle of the night. I can’t go. My back was supposed to go but she can’t get there til later.