12-24 months and up support group

[[Li...]]

Accidental and GG,

 

So happy that you're doing well.  It's so wonderful to hear!

 

GG,  Thank you for the kind words

 

Helen and LadyDen,

 

I'm so sorry to hear your waving again but I'm sure it won't be long lived because you both always end up in a good window.

 

I'm still suffering so badly and hoping for a break.

 

Hugs! LiveLife

[[Ga...]]

UPDATE:  So much for a wonderful window!  Ended up going to urgent care a couple of hours ago and diagnosed with another stinking UTI!!!!  Here we go again with another antibiotic, and there goes my Mexican fiesta party for out of town family.  I have really enjoyed getting ready for the party, so am very disappointed that I am down and out once again.  I am going to meet with my urologist next week to try and figure out why I keep getting these UTI’s!

 

Anyway, I sure hope all of those in a wave feel better soon!!!!!

 

Hugs,

 

GG

[[de...]]

LadyDen:    Sorry you are not feeling great!  You will be back to feeling better soon!  Riding these waves can be tough, but coming out on the other side is very rewarding.  We all just need to hang on!  Better days ahead. 

 

Helen, GG, LiveLife, JordanJack, Accidental, et al.  Thinking of you!

 

Happy 4th to the Americans!  Thankful for our freedoms!

 

Lisa/Decatur

[[Be...]]

GG, hope you feel better soon and get over your UTI.

[[Ga...]]

Thanks, Becks!  You are so kind to think of me!!!!

 

Hugs,

 

GG

[[Be...]]

Drinks lots of cranberry juice.  That's what I used to do.

[[jo...]]

UPDATE:  So much for a wonderful window!  Ended up going to urgent care a couple of hours ago and diagnosed with another stinking UTI!!!!  Here we go again with another antibiotic, and there goes my Mexican fiesta party for out of town family.  I have really enjoyed getting ready for the party, so am very disappointed that I am down and out once again.  I am going to meet with my urologist next week to try and figure out why I keep getting these UTI’s!

 

Anyway, I sure hope all of those in a wave feel better soon!!!!!

 

Hugs,

 

GG

 

Hi GG,  (guys, you may want to skip reading the below since it’s girl stuff info)

 

I’m so very sorry about the UTI, and your lovely party you planned. You had been feeling so much better too, but you will bounce back and can perhaps have the party another time.

 

I had multiple UTIs months ago in the middle of this awful benzo withdrawal and endless rounds of antibiotics. It seems benzo withdrawal can bring on so many problems. The antibiotics never really helped because it can’t get to the biofilm where the ecoli live, so the ecoli keeps coming back causing the infection; the solution is to prevent the ecoli bacteria from manifesting. There are biofilm protector/reducer supplements, but I’m not sure how well they work.

 

I researched a lot and finally went to a Urologist. I now take powdered D-Mannose a few times a day.

Just put a scoop in a small cup of water, drink it, then wait 30 min, then drink another glass of water to flush. The D-Mannose prevents those UTI bacteria from attaching to the area so bacteria doesn’t have a chance to form.  I use this brand:

https://a.co/d/hFrojED

 

When you have an active uti, you can do the dmannose and then every few hours away from the d mannose, you can drink baking soda and lemon. This helps to balance the ph, and primes the area to receive the next dmannose dose. Keep doing it for a few days.  Then do the baking soda and lemon a few times a week to help the ph. Then get in the routine of taking dmannose daily.

 

Also, if you are menopausal and no longer have estrogen it is very easy to get utis because the estrogen in the area helps to prevent them. My urologist put me on low dose estradiol creme which I use 3 x a week. This was the answer for me and I have not had a UTI since. It is very safe and my urologist says any woman over 50 should use it because of the lack of estrogen in the lady parts and the issues that can arise. (Uti, atrophy, etc.) You can also check out the Menopause feed on Reddit as they have helpful advice about it too.

 

If you use Cranberry juice, it must me the non sugar pure juice, but actually the high quality cranberry supplements can work better for me. I don’t take the cranberry much anymore since the d-mannose helps, but you can do both.

 

Here is a helpful video with a urologist that explains more: There are other helpful videos on the channel as well. You can read the comments posted on the video to see other responses.

 

I know how absolutely terrible the Utis are and they are so very painful! I hope this information helps and that you are able to feel better soon. I’ve been surging bad for months and never gotten a window from the awful body and brain burning, so I pray we turn a corner soon.

I am sending you healing hugs. ❤️🤗

 

 

[[Li...]]

GG,

 

I'm so sorry to hear that. I sure hope it clears up quickly for you. Hugs! LiveLife

[[Ga...]]

JordanJack, thank you so very much for taking the time to provide me with the much needed and invaluable information!  I will definitely view the videos tomorrow!  I have an appointment with my urologist in a couple of weeks, but I will definitely try some of the D-Mannose powder….I have used the D-Mannose capsules before, and, in fact, I discussed the use of it at a prior appointment with my OBGYN and she was very interested.  There are more and more doctors, especially those that deal with female issues, that are becoming aware of the value in using more natural methods in treating UTI’s, yeast infections, pelvic pain, and vaginal atrophy, etc.

 

Should I use the D-Mannose now that I am on my second day of the Ceftin, which by the way is really helping with the UTI.  I have to take it twice a day for a minimum of seven days.  I am taking a good probiotic as I certainly don’t want to risk getting a yeast infection which can easily happen when using antibiotics!

 

I am so sorry you continue to have such painful symptoms, but you will gradually see symptoms fall away and open windows will give you more strength to deal with any remaining symptoms.

 

You are healing!

 

Hugs,

 

GG

 

 

[[La...]]

Morning hugs everyone! I hope your 4th was a good one. The fireworks was a bit much but my fiancé was right here with me. So sweet!

Thank you Helen for the get better wishes. You know I’m wishing the same for you and everyone. Sending big hugs.

 

GG I’m so sorry that you have another UtI. It’s unreal how you keep getting those. The only thing I can think of is there was some ladies that after they aged, the genital area dropped so it made it easier for bacteria to grow. Sorry if I’m being too straightforward but it makes sense if things are “ straight” that germs can collect and not get washed out as they normally could. Hope you get this resolved soon. Sending you big hugs!

 

Live, I am waiting on you to turn your corner. You are a strong, kind, sweet and supportive friend here. We all love you! You deserve a nice long window when you do turn that corner. And you will get there! Thank you for being a great support to others as you are suffering yourself. Big hugs!

 

Jordan I hope today will be a better one for you too. You amaze me how you continue to stay going forward. Your endurance is a testament of your strength. I know it’s not easy for you or anyone but you keep on pressing. That deserves a big applause 👏 so big hugs to you!

 

Lisa thank you dear! Yes these little rough patches are just that…patches that pop in to do fine tuning. I’m not letting them get me down. As of yesterday it started lifting again. So I’m already thinking about what I want to do today especially since the rain has taken a break. I’ll probably just do minor things because I’m not back to my normal yet. So …some gentle walking outside for sunlight and parking lot driving a bit. I hope you feel well enough to do something fun too. Big hugs!

 

Becks hello to you. I read on a post in the Village that you fell. I hope you are ok. Big hugs

 

To everyone else I’m sending my love and encouragement for you to own the day by waving hello to Benzo Bully with your middle finger! 😂 Have a great day!

 

Wrists locked 🤝

[[He...]]

Lady Den,

 

You made me laugh with waving the middle finger at the bully.  :D I'm waving mine! I hope you keep on improving and coming out of your 4th of July fireworks wave. Mine is also lifting.  I'm left with stuffy, loud ears, burning scalp and slight balance issues but the other stuff has fizzled out more or less.

 

GG! I'm glad the Ceftin is helping and hope you can get all this sorted out.  Jordan Jack was a whole encyclopedia of info that will hopefully help in some way.  I'm just sorry both of you have had to deal with this.  Sending hugs.

 

Becks, Decatur, LiveLife, J Ben, Fire, Hardy, Jb, Kanoba I send my greetings.  I hit my 25 month mark on July 1.  Marching forward still.

 

Helen

[[jo...]]

JordanJack, thank you so very much for taking the time to provide me with the much needed and invaluable information!  I will definitely view the videos tomorrow!  I have an appointment with my urologist in a couple of weeks, but I will definitely try some of the D-Mannose powder….I have used the D-Mannose capsules before, and, in fact, I discussed the use of it at a prior appointment with my OBGYN and she was very interested.  There are more and more doctors, especially those that deal with female issues, that are becoming aware of the value in using more natural methods in treating UTI’s, yeast infections, pelvic pain, and vaginal atrophy, etc.

 

Should I use the D-Mannose now that I am on my second day of the Ceftin, which by the way is really helping with the UTI.  I have to take it twice a day for a minimum of seven days.  I am taking a good probiotic as I certainly don’t want to risk getting a yeast infection which can easily happen when using antibiotics!

 

I am so sorry you continue to have such painful symptoms, but you will gradually see symptoms fall away and open windows will give you more strength to deal with any remaining symptoms.

 

You are healing!

 

Hugs,

 

GG

 

Hi GG,

So glad the antibiotics are helping. I hope this will be the last round you have to take.

It can be such a cycle, Uti, antibiotics, Uti, antibiotics, yeast infection from antibiotics, then another uti from those antibiotics, and on and on. I fought it for months last year and 4 utis. Just awful!

 

Yes, you can start using the d mannose powder now.

The powder works better than the pills because there is no pill to break down.

You may want to do it 3x a day to keep flushing the bacteria; then continue to use it daily.

I use a big whopping scoop full in a small amount of water in a coffee cup and warm it in the microwave 15 seconds, then drink it and let it sit in the bladder for 30 minutes then drink a glass of water to flush it.

 

If you use the baking soda and lemon juice, you can use a teaspoon of each. Be sure to use it an hour away from the d mannose as this will prime the area for the next dmannose dose.

It helps with balancing the ph. I only use the lemon/baking soda once daily. I use the dmannose first thing in the morning and then midday and evening. I’m very proactive about it now, after suffering those awful utis. 

 

Once you are past the uti, be sure to continue taking the dmannose daily. Also, the estradiol is a game changer as it supplies the needed estrogen down there in order to prevent utis. I don’t use the applicator, as it’s uncomfortable, I just squeeze out a 1/2 inch of the creme on to my finger and insert. You might need to use daily for the first two weeks, then reduce to 1/2 inch creme, 2-3 x per week. It is very safe, however for women who have had cancer, they wouid just need to discuss with their doctor because it is a hormone, but resources say that the estradiol is so low dose and is topical, so it’s safe. If you don’t have insurance for the prescription you can go to goodrx website and get the discount price.

 

Also, try to take a good probiotic for women. I use the garden of life brand (Amazon) and also use one from uquora, which is a website with uti prevention products. Either one is good and has the needed ingredients for uti prevention and other stuff for women’s health.

 

If you take long warm baths you may need to stop those as the warm water soak is a welcome mat for ecoli manifestations. I used to love my warm baths, but have stopped those, but you may be able to do so, I just don’t want to take a chance.

 

If you are peri menopausal or menopausal the estrogen is no longer available to us to help prevent utis, sadly. Many women have this issue with utis in menopausal years, along with atrophy, so I think you will definitely see improvement and prevention.  I wish I knew about it a long time ago. My urologist was a big help. She did a cystography on my bladder which was fine, then got me started on the estradiol and d mannose. She said to tell all your lady friends, so I’m happy to share with you.

 

Take good care! Thank you for your encouragement as well!

Big hugs!

❤️🤗

[[Ga...]]

Well thanks to a lessening of my uti symptoms the Mexican fiesta is back on the calendar for 6:00 p.m. today!  My husband and I have been running around like crazy getting everything arranged so we are now in pretty good shape!  A loud thunderstorm just pulled away, so, hopefully, we can still entertain outside.  If not, we will just pull back and punt!

 

LiveLife, I am always thinking of you and so hoping to hear some good news from you soon!  You have been supporting so many of us for so long, that there will be a cascade of love surrounding you when you share that your healing is finally happening.

 

Love and hugs to the rest of you!!!!

 

GG

 

 

[[He...]]

GG,

 

I'm so happy your fiesta is happening!  Enjoy yourself and rest tomorrow.

 

Hugs,

Helen

[[Be...]]

Thanks everyone for the well wishes.  I do appreciate it. 

[[Li...]]

LadyDen,

 

I'm so glad you had your fiance there supporting you. It's a wonderful thing! Thank you so much for all your kind works a window would be so greatly appreciated.

 

GG,

I'm happy to hear the antibiotic is working for you. Hopefully you'll be feeling better ASAP!

 

Helen,

Congratulations on 25 months. And it's good to hear that your wave has settled down and things are improving.

 

I'm still hanging on and trying to stay positive and hoping for a nice sparkling window. This really is brutal!

 

Hugs to all my beautiful bodies!  LiveLife

[[jo...]]

Lady Den,

Thank you so much for your encouraging words. I literally waved my middle finger as you suggested! This whole process deserves it. I hope you are feeling better coming out of the wave. I’m so happy that you have your sweet fiancé there to support you. You certainly deserve such happiness.

 

Helen,

Thank you for your kind heart and encouraging thoughts. I’m glad the wave has lifted somewhat for you. I’m so sorry that you are experiencing the burning scalp. I’m right there with you on that. It truly is so very painful so I hope it lifts for you soon, along with the other symptoms that are rearing their uninvited heads. Congratulations on your 25th month anniversary. I hope you have a nice window to open for you soon!

 

GG,

I’m so happy you were able to have your Mexican Fiesta. I sent another reply to your previous post reply with some more information on the UTI armour.  I hope you are feeling much better and have a wonderful time at your party.

 

Decatur, Accidental, Beck’s, FeelingFire, LiveLife, Hardy, Jorgen, JBen, Dehytq, Paschu, Macsha, et al.  Thinking of you too!

 

Ps. Does anyone have suggestions on how to deal with the awful mornings and chemical anxiety? Everyday it’s like being in shark infested waters. I didn’t have it in year one but it sure has made an appearance and my eviction notice to it doesn’t seem to be working.  I distract, pray, walk, swim, meditation doesn’t really help me.  I wouid stand on my head if I thought it might help. What an awful feeling it is.

 

Sending everyone Hugs!  😘💕

[[Ga...]]

Hi JordanJack.  I finally watched the video done by the urologist and she makes a great case for the Estradiol, but I am concerned as it contains a steroid!  I don’t do well at all with any form of steroid, as I have had to use a steroid cream for interstitial cystitis and I was knocked back into a bad wave.  I am seeing my urologist on July 21st and I will mention the Estradiol and see what she says.  I never had many UTI’s until Valium entered my life for one year, and screwed my entire central nervous system!  I have read of other female buddies who said they had all sorts of female issues which faded away once they had recovered!  They talked about frequent bladder and kidney issues, recurring UTI’s, pelvic pain, incontinence, etc.

 

Now, how is your head feeling lately….any improvement at all on the burning symptoms?

It continues to amaze me that benzos can do so much damage to almost every part of our bodies.  Criminal in my book.

 

The party was a grand success and I felt pretty darn good through the party, and was able to get up this morning and clean everything up so the house is back to normal.  I am trying to stay away from all the leftovers, including Chile con queso, salsa, tortilla chips, and sopaipilla, all which are not very good for a UTI!!!!!

 

I am 76 and was a very healthy 71 year old when all this started.  I just want to get on with my life and not have to worry about these UTI’s flaring up out of nowhere!  I am sure you feel the same.

 

Have a great day!

 

Hugs,

 

GG

[[jo...]]

Hi JordanJack.  I finally watched the video done by the urologist and she makes a great case for the Estradiol, but I am concerned as it contains a steroid!  I don’t do well at all with any form of steroid, as I have had to use a steroid cream for interstitial cystitis and I was knocked back into a bad wave.  I am seeing my urologist on July 21st and I will mention the Estradiol and see what she says.  I never had many UTI’s until Valium entered my life for one year, and screwed my entire central nervous system!  I have read of other female buddies who said they had all sorts of female issues which faded away once they had recovered!  They talked about frequent bladder and kidney issues, recurring UTI’s, pelvic pain, incontinence, etc.

 

Now, how is your head feeling lately….any improvement at all on the burning symptoms?

It continues to amaze me that benzos can do so much damage to almost every part of our bodies.  Criminal in my book.

 

The party was a grand success and I felt pretty darn good through the party, and was able to get up this morning and clean everything up so the house is back to normal.  I am trying to stay away from all the leftovers, including Chile con queso, salsa, tortilla chips, and sopaipilla, all which are not very good for a UTI!!!!!

 

I am 76 and was a very healthy 71 year old when all this started.  I just want to get on with my life and not have to worry about these UTI’s flaring up out of nowhere!  I am sure you feel the same.

 

Have a great day!

 

Hugs,

 

GG

 

Hi GG,

 

So happy your party was a success! So glad you were able to enjoy that much deserved fun!

 

In reference to the mention of steroid, it is my understanding that this is not like a steroid one would take such as for inflammation, steroid shot, etc.

 

We all have steroid hormones that are produced by the endocrine system.Steroid hormones include sex hormones and adrenal gland hormones. Testosterone, estrogens, and cortisol are examples of steroid hormones. Here is more information.

 

https://www.thoughtco.com/how-steroid-hormones-work-373393

 

Perhaps you can try the dmannose regime and see if that helps deter the utis, and then try the estradiol at a later time if needed. I know how awful they are so I hope you’re doing much better.

 

Yes, I still have the burning brain, neck, upper arm and lower legs. The head is the worst.

I sure hope it leaves soon! Thank you for your encouragement!

 

Hugs!! 💕🤗

 

 

[[Ac...]]

 

Ps. Does anyone have suggestions on how to deal with the awful mornings and chemical anxiety? Everyday it’s like being in shark infested waters. I didn’t have it in year one but it sure has made an appearance and my eviction notice to it doesn’t seem to be working.  I distract, pray, walk, swim, meditation doesn’t really help me.  I wouid stand on my head if I thought it might help. What an awful feeling it is.

 

Sending everyone Hugs!  😘💕

 

You're doing what you can- getting out, getting on with your day, staying active.  There's no magic to get rid of it, unfortunately, just to push through and try to ignore it if you can.  I always appreciated the afternoon/evening relief before it spiked back up in the early morning hours. 

[[De...]]

Hi everyone,  I'm at 21 months why don't I get a window my sx are so terrifying lately. I cznt focus my head dpdr no feelings,  is this normal.  I don't even like being alone my screen looks scary

[[jo...]]

 

Ps. Does anyone have suggestions on how to deal with the awful mornings and chemical anxiety? Everyday it’s like being in shark infested waters. I didn’t have it in year one but it sure has made an appearance and my eviction notice to it doesn’t seem to be working.  I distract, pray, walk, swim, meditation doesn’t really help me.  I wouid stand on my head if I thought it might help. What an awful feeling it is.

 

Sending everyone Hugs!  😘💕

 

You're doing what you can- getting out, getting on with your day, staying active.  There's no magic to get rid of it, unfortunately, just to push through and try to ignore it if you can.  I always appreciated the afternoon/evening relief before it spiked back up in the early morning hours.

 

Thanks so much Accidental. It truly is a beast! Yes. It really spikes in the morning when the burning nerve pain ramps up. Sometimes it stays all day on days where I am in a lot of pain from the burning, but like you said, I just try to push as best I can. I sure do wish it would go away. The chemical anxiety is far worse than the “normal” anxiety. I hope it leaves for us soon! Hugs!

[[jo...]]

Hi everyone,  I'm at 21 months why don't I get a window my sx are so terrifying lately. I cznt focus my head dpdr no feelings,  is this normal.  I don't even like being alone my screen looks scary

 

Hi Dehyyq2,

I’m so sorry you’re having a difficult time. I’m in month 18 and have never gotten a window from the burning brain and body nerve pain. I have other symptoms that terrify me as well, including awful chemical anxiety.  Are you able to get outside or listen to calm music, or distract in any way?

I’ve also read where others have the eyesight issues with tv or screens, but it goes away.

 

I don’t understand why some get windows and others aren’t as lucky. It sounds like everything you’re experiencing is typical Benzo withdrawal. It’s all so very unpleasant, painful and distressing, but we just have to keep hoping that we too will get a window or relief soon. All those symptoms you have will leave as you heal. This is absolutely brutal indeed!

 

Keep hanging in there and coming here for encouragement. I understand the fears completely especially since we are months out, but I pray we turn a corner soon.

Sending you big hugs!

[[De...]]

Thank you Jordan Jack,  I bet we get a window soon. I try to go out this sx is so scary I have to come back in. It's even hard distracting cause looking at the computer is hard. I appreciate your kind words so much I've been so scared. Sending you big hugs too!

[[La...]]

 

Ps. Does anyone have suggestions on how to deal with the awful mornings and chemical anxiety? Everyday it’s like being in shark infested waters. I didn’t have it in year one but it sure has made an appearance and my eviction notice to it doesn’t seem to be working.  I distract, pray, walk, swim, meditation doesn’t really help me.  I wouid stand on my head if I thought it might help. What an awful feeling it is.

 

Sending everyone Hugs!  😘💕

 

You're doing what you can- getting out, getting on with your day, staying active.  There's no magic to get rid of it, unfortunately, just to push through and try to ignore it if you can.  I always appreciated the afternoon/evening relief before it spiked back up in the early morning hours.

Yep I agree. There’s nothing much you can do except, stay calm/ relaxed. Meditation with soothing spa music helps to focus on something nice until it begins to lift. I hope it goes away for you soon.

I didn’t have morning dread for my first year either. Now, it’s very mild most mornings. I get up, open the blinds, look at the birds, get a decaf coffee and stick to calming things until it passes. About an hour for me…most of the time.